Fashionably Later

A day to forget

2011-05-29T12:02:00.000-07:00

I’m having a hard time. There’s no way around it. I keep trying to turn the corner but I just can’t seem to do it.

Sometimes it’s the big things, the obvious stuff that would keep anyone up at night…like, will the cancer come back, will I live a natural lifespan? That’s understandable…I can deal with all that long term, I think. But it’s actually the little things that hold me back from moving on…I’m finding the subtle stuff worse. All those countless reminders, the myriad ways that the aftermath of cancer infuses every nuance of my life. That’s what is eating away at me. And not just me.

Daniel has a number of mosquito bites on his leg and he is very upset by them. At first I thought it was the idea of a creature biting him that was the trouble, but he seems more worried about the appearance of the red bumps. I’ve had to assure him numerous times that they will go away, he won’t be marked forever.

This morning I think I finally figured out why it has been so disturbing for him. He asked me if the boo-boo on my reconstructed breast would ever go away. The scar from the skin necrosis is significant, and what’s left of my nipple & areola is markedly different than my unaffected breast. I told him that no, it would not go away, but that was okay. I explained again to him that the boo-boo didn’t hurt, it was a scar from when Mama had cancer. Did he remember that, I asked? No. He burst into tears that my boo-boo was there forever -- and that’s when I knew…he was afraid his mosquito bumps would be too. I reassured him over and over again that his bites were not the same as Mama’s scar. He seemed to feel better but was still quite sad that my boo-boo was permanent. I told him that I was okay with mine, that I even was happy to have the scar because it was from the doctors taking out cancer, and if they didn’t do that I would have gotten very sick and not been here to take care of him and watch him grow up.

It’s hard to believe he doesn’t remember the summer of my mastectomy in 2009, but then again, why would he, he was only 2 at the time. He barely remembers me being sick from chemo in 2010 either. However he does fondly recollect my hair and every once in a while he’ll say how much he misses it. It’s longer now, finally down over my ears…but still not long enough to play with the way he used to.

Daniel doesn’t remember nursing, either, and that breaks my heart to pieces, I will truly never get over having to wean him and the painful process that was. He’s heard us talk about nursing, tho, and I’d like to think on some subconscious level it’s still there in his little soul, all those tender moments, that precious experience. After seeing a baby nurse on TV last night he asked me if I could ever give him milk again from my “ta-ta” (what we used to call it). I hesitated for a minute and by the time I was ready to answer him he’d moved on to another subject. I’m glad. I don’t know if I could have held it together even after all this time.

The trifecta came just a few moments ago. I decided to clean out a drawer of a long dresser by our front door. The first thing I pulled out was a receipt. It was from an upscale maternity boutique, one that I visited only once. I needed nursing bras. Michael had found a silly little baseball cap and bought it for Daniel. It was listed on the receipt by what it said across the front…“Boob Man” -- $15.00 .

My kid had mosquito bites, I cleaned out a drawer and WHAM, here I sit trying not to drown my keyboard in fresh tears. Forgive me, I know Memorial Day is something different, but right now for me remembering is overrated. Just once I’d like to forget.

Joy To The World

2011-04-02T18:08:00.000-07:00

I'm not sure what to blog about so I’m just going to share what I’ve been thinking lately...it's about joy, I've been thinking alot about joy.

Do you have enough joy in your life?

What do you do that brings you joy?

Right now there are days where for the life of me I can’t think of a single thing that would actually bring me joy – not anything realistic anyway. I mean, winning the lottery would be totally amazing, so would a free trip somewhere exotic. Finishing my novel would surely bring me veritable fits of joy – and maybe someday I’ll get there but for now I’m not even close, so that leaves me pretty much back to square one.

No question, being a mom often does bring me great joy (among other things, lol.) My kids can completely delight me on a regular basis just by being themselves. I'd say delight is right on par with joy. Fulfillment, too, is at least a close relation to joy. Probably my most fulfilling moments in all of my life have been as a mother.

In the last couple of years or so my other moments of fulfillment have mainly come from writing, in one form or another (the slow progress of my novel not withstanding). I do sometimes find the actual practice of writing itself joyful-ish, to a certain degree. But truth be told it’s also equal parts maddening and agonizing depending on the hour. Apparently I’m in excellent company: I recently read that when Virginia Woolf was asked about her love of writing she retorted that she loved having written.

Still, I do get a thrill writing something profound or witty…I've even had the rare experience of writing something that took my own breath away. However, touching another person in any way with my writing is probably the most profound joy outside of motherhood that I’ve ever known. Those moments can be rather few and far between…occurring just often enough to keep me going, but not nearly often enough to keep me "joyed up" for very long.

The last time I remember actually being joyful for reasons beyond motherhood or writing was…well, I don’t remember but it was no doubt probably before cancer. And I’m also guessing it was fleeting. I think I was regularly happy…happy blogging here, about getting my novel underway, about finding more time for poetry…happy in my marriage, with my children (always) and even getting there about myself. Frequently my life achieved a satisfying rhythm that often brought me a certain amount of contentment…but it’s hard to remember now when looking back thru the lens of cancer if I felt much joy before my diagnosis.

But then again, what is joy anyway? How do you describe it? Is it like pornography, indefinable but you know it when you see it?

Would I still know it if I saw it?

For now joy remains elusive. Happiness is not a frequent visitor either. It was two years ago yesterday since finding the damned lumps and I still feel like I’m in the thick of it. Cancer duties linger…there are scans, appointments, maintenance. Michael now has his own set of appointments, scans and research…he’s the one in a holding pattern now. In between I try to reassemble my life. But I feel like components are missing. Pieces of me were taken away with the scalpel that contained more than flesh, tissue and cancerous tumors. I think they contained some of my capacity for joy.

But I'm still looking for it because you never know. You just never do. It could be anywhere.

And then...

2011-03-23T17:25:00.000-07:00

…six months went by.

How often have you come across a blog that was abandoned and desperately wondered what happened? As someone who frequented cancer related blogs, when ever I would read one that stopped abruptly I would naturally fear the worst.

But the worst has not happened to me. Cancer-wise? So far, basically, so good.

My husband’s health, on the other hand, went south and fast. He has had some serious autoimmune issues. More doctors, research, procedures. And this has thrown me for a loop, perhaps even more so than my own cancer. Like the kind of loop that leaves you upside down and makes you question the very essence of…everything.

In the last six months I've felt at times that there was no goodness left for me in life. I have felt that there was nothing I could say, or write, that wouldn’t ring hollow because I was hollow. And I feared I was emptied beyond refilling.

I kept trying to find that new normal everyone always talked about during surgery and treatment, the one that I thought would inevitably come once it was finally all over. Except that it’s not really over, and in many ways it never will be. Still, I tried to blend that ideal of a new normal with the memory of the old version to create something new for the rest of my life. But I have just been so lost I couldn’t do it. I guess that’s really it – I’ve been profoundly lost. Hopelessly off course beyond finding my way.

So, this is me looking for something familiar, trying to find my way again. Trying, however tentatively, to move forward.

To all those who so lovingly supported me before, if any of you still pass by this way, I’ve missed you, I’ve thought about you and I’m sorry for temporarily abandoning this blog. I never abandoned you, though, not in my heart.

hair raising

2010-09-25T14:13:00.000-07:00

I have a love/hate relationship with my wig. Okay, maybe that statement is a bit strong. Let’s just say it reminds me of having a haircut that you’re not completely sure of…you know, it’s not the worst style you’ve ever had but you’re not all that crazy about it either.

There are a few things I like about the wig. For one thing it doesn’t seem to look like a wig, or at least that’s what everyone says whenever I reveal the truth. People seem to be genuinely shocked that it’s not my real hair. And a wig is very easy to maintain – just put it on, straighten it out and go. It’s also more comfortable than I thought it would be and always feels secure…no sense of it slipping or blowing off.

What I don’t like about the wig is the shape, or cut if you will…there’s something a bit off about it. Maybe too full on top? Too thin on the bottom? Not sure. It’s not the worst style I’ve ever worn, but if my hairdresser had done it, next time I’d tell him to leave it fuller on the bottom and not so poufy on top.

Gosh, I miss my hairdresser.

Which brings me to my own hair…at first it took a long time to even start coming back in…like a scary long time. And then when I finally began to see faint evidence of growth it was only on the sides and the back. As each week passed I became more and more alarmed. I mean, I looked like a balding man, as if I had a receding hairline. Of course it didn’t help that little Daniel kept saying I looked “just like Daddy”…(I will SO remember that, Kid!)

My concern was not just paranoia. Unfortunately there is a small risk of permanent hair loss with one of the chemo drugs I took, Taxotere. (Let it be known tho that while the other common choice, Taxol, doesn’t have the same risk regarding hair loss, it may instead have a slightly higher rate of causing neuropathy.)

Anyway…just as I was about to totally freak out, thankfully the front and middle finally began to lightly fill in.

However, my hair is a completely different color! It is very dark, sort of an ashy brown. From what I’ve heard it often grows back darker on those with lighter hued locks. After about a year or so the dark color starts to fade out and the original color usually returns, although sometimes that doesn’t happen. A number of women will also end up with very different hair texture after chemo…again, sometimes it eventually returns to its original state, sometimes not. Typically those formerly with straight hair will have curlier hair after, not as often the other way around. Since my hair was naturally somewhere in between, sort of wavy, who knows how this will all turn out? It’s hard to tell anything much when it’s barely an inch long.

For now I’m attempting to just go with it, to varying degrees of success depending on my mental state at any given moment. I’m trying to be patient and just take it as it comes – not like I really have much choice in the matter anyway. On the bright side I may use this as an opportunity to try hair colors and styles I never would have dreamed of experimenting with before. So in the end I guess you could say this is sort of a once in a lifetime opportunity…at least all things considered it had certainly better be once in a lifetime!

Photo finish

2010-09-17T09:49:00.001-07:00

Last November I blogged about what my mom wore to chemotherapy when she had breast cancer a couple years ago. I decided that when I went for my own treatment, rather than dress strictly for comfort alone, I would also try to put together and wear outfits that made me feel good about the way I looked, sort of as an act of empowerment. I also planned to take pix throughout.

But I didn’t take pictures.

Mind you, I actually did manage to dress pretty cute for every single infusion. In fact, chemo-day was practically the only time I donned real clothes, the only time I wore my wig or tried to put on any make-up. Most of the rest of the time I spent in baggy sweats, bald, no make-up, laying around and trying not to completely cave in.

On chemo-days, though, I made the monumental effort to look better, and it did make me feel stronger. But whenever I would catch a glimpse of myself in the mirror I was downright unrecognizable, though to someone who didn’t already know me, well, they might never have guessed I was in the midst of cancer treatment. Dear Michael used to lovingly joke I had better start looking worse otherwise people wouldn’t believe I was sick.

But all the same, I never felt like posting a picture.

I had wanted to take photographs during treatment as a sort of visual record of the experience, something tangible to illustrate the evolution I’d inevitably be going thru. See, when I was obese I never had any pictures taken. For almost ten years of my life there’s scarcely any evidence of me existing. I’m not there in the holiday photos…barely any wedding pix, certainly no candid vacation albums. So many memories are just in my head without anything to show or share. I virtually edited myself right out of my own life. And once I lost the weight I realized what a shame that was, such a waste…how sad. I vowed I would never do that again.

But when reality hit and the chemo side-effects took their inevitable toll the thought of seeing all that laid out in living color, let alone plastered in the blogosphere, became much too painful -- I completely changed my mind. In light of what was going on it just didn’t seem important. Frankly, I wasn’t sure I wanted to memorialize any of that in pictures for posterity.

After treatment ended and the summer months wore on I still didn't want any photos, for here or anywhere else. Understandable, I’d been thru a lot…but…would I ever? I secretly mourned the possibility that I might not. That would feel like yet another loss to cancer amongst so many others.

But then, very slowly, I started to feel a little better, and subsequently my appearance in the mirror reflected that back to me. Amazingly even as the whole pulmonary nodule episode unfolded and wracked me with fear to my core…despite even that, bit by bit I started to vaguely recognize myself.

Day by day I look more and more like me – and I’ve decided whether it looks like the same me as before is totally beside the point at the moment. What really matters is I am alive…I’m living my life and getting well again.

And then, she went shopping...

2010-09-13T09:59:00.000-07:00

Hey, a girl still has to get dressed, right? Besides, retail therapy is practically a required prescription under certain circumstances. To say I’m entitled is putting it a bit mildly.

It’s not like I haven’t shopped since my cancer diagnosis of course…in fact I even had to buy a few essential things right in the midst of chemo because I gained 22 lbs and nothing fit. But that’s definitely not the same thing as wanting to shop for the sheer enjoyment of it.

Actually, even without weight fluctuations everything has fit differently since the surgery last summer. One year later and my body is still a little new to me, I'm still experimenting, finding out what works and what doesn't.

On the downside my reconstructed breast is about a full cup size larger than its mate, which now requires extra padding. However, on the much brighter side, I no longer have quite my former girth ‘round the middle which makes a big impact in how clothes look on me. As some may recall, thanks to a 130 lb weight loss and two c-section babies, I had been living with (and de-emphasizing) quite the substantial pannus. That's all gone now, somewhat miraculously put to good use via my reconstruction.

(Okay, I'll just say it again, really, who knew that could ever have come in handy for anything???)

Meanwhile I’ve slowly managed to lose about 15 of those 22 chemo pounds so far and while most of my old clothes do now fit me once again, somehow they aren’t all as flattering on this new shape.

Anyway, all this is leading up to the fact that I hit the mall and hit it hard, lol. Got myself a couple pencil skirts, tried to find new jeans (unsuccessfully) and found several simple but versatile tops – plus a really nice Jones New York basic black dress at Lord & Taylor on sale for only $48!

Most importantly – it was fun!

Admittedly I was apprehensive at first….afraid my focus would be on all the body issues created by cancer & reconstruction. But you know what? With each piece I tried on for every new concern there was an old one that didn’t seem quite so prominent anymore. Point being that no matter what body you are in, no matter what’s happened to it, you can learn to work with it and enhance all the remaining positives. And believe you me, if I’ve learned one thing in my life it is that there are always positives.

Life, and apparently shopping, goes on :)

Now what???

2010-09-10T10:00:00.000-07:00

Today is my 47th birthday. We’re not doing anything particularly special, oh, they’ll be cake and a nice meal, some presents from Michael & the kids. But I didn’t want a big tadoo, just a regular birthday like I’ve always had.

That might sound strange, I mean, shouldn’t I be dancing in the streets since pretty much dodging the mother of all bullets, what with no lung metastasis?

Incidentally, I spoke to my oncologist last night (she calls me at home pretty often, isn’t that nice?)…anyway, the final report came in from the “lung biopsy that wasn’t”. According to the CT scan all the pulmonary nodules seem to have essentially resolved themselves with the exception of one – there’s no evidence of any of the rest. Hard to believe, isn’t it? The lone hold out got 1cm larger than it was from a prior scan, but that could be explained by how CT imaging is sort of sliced. Imagine an orange, if you sliced it towards the end it would appear smaller in circumference than if you sliced it in the middle. So this last nodule might even have gotten smaller and it just didn’t appear that way.

The plan is to re-scan in a few months. I asked her if it was okay to wait until after the winter holidays and she gave me a resounding yes. She said we can be VERY confident it’s not a fast growing metastasis, and pretty darn confident it’s not any kind of metastasis at all…nor is it likely to be a new primary cancer either. All things considered, I’m moving on and not worrying about this anymore.

So why am I not celebrating my ass off?

I’ve been thinking about this a lot. Perhaps there are phases you inevitably pass thru when you have cancer, and I've sort of suffered from arrested development, if you will. The way I presently see it there's four phases:

1. The discovery and diagnosis stage, when you are finding out what you have and how to treat it, if it’s spread and what your prognosis might be. It’s a crash course in your own particular cancer situation and frought with the kind of decisions that no earthly person should ever have to make.

2. Then there’s the treatment phase itself…surgery, chemo, radiation, hormonal and other ongoing therapies. For some of us, all or part of the treatment may continue for many years, but chances are the intensive remedies like surgery and chemo will be relatively short-lived, in the grand scheme of things.

3. After all of that comes the healing stage where you go thru a physical recovery from your treatment. You may need to adjust to a drastically changed body, severe side effects from medications will gradually diminish, wounds will heal. Permanent damage will be assessed and you will learn to manage various conditions and any ongoing medications.

4. Finally you enter what is hopefully the last phase of your voyage – continuing on with your life in the wake of having had cancer. Some of us have to do that part while knowingly living with cancer, some of us get to do it “cancer-free” – hopefully for a long, long time. This is when you begin to work on recovering from the emotional wounds, maybe the most difficult recuperation process of them all.

For the average woman with breast cancer it takes about 9 or 10 months from discovery to reach that 4th phase. Clearly with all the obstacles thrown in my path my journey has been quite a bit longer. It’s been nearly 18mos now since discovering the lumps in my breast. So even tho technically my last treatment was at the end of April, I’ve been stuck, left in a holding pattern while waiting to find out whether or not the cancer had already spread. Now that pause button has been released and it’s time to fully move into the fourth phase.

Physically I’m left with the aforementioned pulmonary nodule, major scars, vast areas of numbness, mild lymphedema, only a little hair and some extra pounds (tho less since I’ve lost a bit). Menopause has been tolerable so far, but I am experiencing some body aches and crankiness from my estrogen deficit. Fatigue is lifting, but still there.

Emotionally? I don’t even know where to start, thus the title of this post and why I’m not exactly partying. I think it is all hitting me full force now…OMG, I had cancer?!?! I have radically changed. I will never be the same. There’s nothing left to distract me from facing this head on anymore….nothing to learn, no treatment decisions, no physical pain, no wounds left to heal, save for the giant gaping one in my psyche.

So it seems I am now, finally, a breast cancer survivor. On October 1st, the first day of breast cancer awareness month, it will be 18 months exactly since I sat down to nurse my toddler son, and with my breast in hand found the lump that would destroy my life as I knew it, leaving me standing where I am now….pretty beat up, sort of stunned, more than a little lost, and very, very much alive.

Biopsy update!

2010-09-01T07:41:00.001-07:00

Hee-hee, they couldn't do the biopsy -- that one big nodule was SMALLER, alot smaller....no lung biopsy for me!!!!!!!!!!!!!!!!!!!!

:D

I think there's still some pulmonary nodules sprinkled around in there (I was pretty out of it yesterday, used my Ativan quite liberally) and I'm sure there will be some scan comparison, yada yada (why yes, I did just "yada-yada" CAT scans) but at this point it looks like the next course of action will be to just wait a while and scan again.

However, ringing in my ears over and over is what the pulmonologist said, "Cancer doesn't shrink all by itself" -- meaning as of right now this is VERY doubtfully cancer!!!!!!!!

:D

Don your party hats girls (and boys) -- let's have a virtual partay. I'll bring the wine and chocolate ;)

You know, I really do wish I could have a real party and invite all you lovely bloggy friends....seeing all your well wishes made me smile, made me cry, and made me feel so much less alone. Thank you, from the bottom of my heart (or should I say from the bottom of my as of now cancer-free lungs!!!!!)

I've got an appointment but wanted to post this ASAP.

Have a wonderful day....I know I will :)

MIA, lung biopsy tomorrow

2010-08-30T19:12:00.000-07:00

Apparently I'm collecting biopsies -- hey, it'll be all the rage, just you wait and see. I've had two since my last post, ones I don't even think I mentioned were a possibility -- a simple skin biopsy for a recently suspicious mole on my foot and a biopsy of my reconstructed breast. I discovered some lumps in the breast and had them ultrasounded months ago, but they lit up on one of my many scans so off for a biopsy I went.

Thankfully both of these were benign.

Let's hope that good news wagon keeps on rolling because tomorrow is the BIG ONE, the lung biopsy. It will be done with a needle, and guided by some sort of imaging (more radiation!) -- but there is almost a 50/50 chance of lung collapse which really freaks me out. I'm told it is often not a big deal, that only rarely is a chest tube needed (2%)...but just the idea of it all has me scared out of my wits.

So scared, in fact, that I've been deep, deep in denial about the whole thing. I haven't even given it much of a thought until tonight at the eleventh hour, if you will. I also haven't written a word, poetic, fiction or blog-wise, in ages. Writer's block is a sure sign I'm in pure animal survival mode, off hiding someplace and licking my metaphoric and soon-to-be all too real wounds. I'm not sure silence is good for me so despite the fact that I want to pull the covers up tighter over my head I came here. I need to shed some light into the dark places.

And to that end, this is what I'm hoping: I'm hoping that when I arrive at the hospital tomorrow and they set up all the machines and start scanning me to find that one large nodule that the radiologist thinks he can "get" that it is magically gone. After that they'll keep scanning and all the little nodules will have disappeared, must have been some sort of mysterious inflamation due to the pneumonia I may or may not have had. Nothing to biopsy, sorry to waste your time, you can go home now.

The pulmonary guy I saw at Sloan Kettering last week thinks that is what this is, just some residual inflamation. My oncologist keeps saying this can't be metastasis, it just can't be, as if she is practically willing it not to be. My 47th birthday is in less than two weeks. I really need to have something to celebrate this year.

Keep your fingers crossed for me, 'kay? Oh, and as usual, to all my dear friends new & old, call me bitch for luck ;)

Going nuts...

2010-08-07T14:09:00.000-07:00

I wish there was upbeat or even definitive news to share, but there’s not.

I wish I could say I am doing well in the interim, but I’m not.

The doctors, in their infinite wisdom, have now decided that I should wait for at least a few more weeks before scheduling the lung biopsy. This is likely because A) they’re hoping the pulmonary nodules will have shrunk and/or disappeared, or B) they will have grown, thus making an accurate biopsy easier. Let’s go with option A, shall we? Either way, while the waiting is nerve wracking I’m not complaining…the idea of having my lungs poked with a needle isn’t something I’m chomping at the bit to experience. I can wait.

On the other hand, emotionally I feel like I’m falling slowly into a pit. I don’t sleep well, even with pharmaceutical aid, and I cry at the drop of a hat. Some days are almost normal, shockingly so, actually. But then there are days when I just can’t seem to control my emotions for even a minute.

What’s probably not helping is that I’ve now got two injections for ovarian ablation under my belt….(literally, that’s where they give you the shot, in your lower abdomen)…and I’ve been taking Arimidex, the estrogen blocking drug I’ll be on for at least the next five years. While I was in “chemopause” before, I suspect that this new hormonal deficit has pushed me a bit over the edge. No estrogen, no mood control at the moment.

To top it all off lymphedema has acted up in earnest…I now have visible swelling in my lower arm. I am not handling that well...it just freaks me out. But I keep doing my home care, even tho it’s not having any effect. I can’t do simple activities in the way I’m accustomed to and it is making me feel suddenly very old, as if piece by piece life as I once knew it has been chipped away.

The one year anniversary of my mastectomy was July 27th. I remember last year as I laid there on the operating table waiting to go under the anesthesia I tried to stay focused on the future, almost as if willing myself to be fast forwarded to a time beyond what I was about to endure. I comforted myself with the promise that by the same time next year it would all be behind me…that in whatever shape I was left physically at least the cancer journey would be over.

Not so. Maybe that was a foolish idea anyway.

You know, I probably could have written the shortest entry in my entire blogging history by just saying this: things totally suck.

I’m sorry for the long absence, and now the totally depressing post, but that’s pretty much what’s going on in a nutshell. A really crappy little nutshell.

Holding pattern

2010-07-15T09:35:00.000-07:00

In the ten days since my last post I've seen and/or talked to several doctors. Bloodwork, scans and reports are being passed around between radiologists, oncologists and pulmonologists (that's alot of "gists" isn't it?)....and some decision will be made this week or next as to when I'll have the lung biopsy. I do know that they will try to do a guided needle aspiration type thing and sample the largest of my pulmonary nodules, but it is only 9mm, so if that doesn't work they have to go in a little more invasively, doing a procedure called VATS (video-assisted thorascopic surgery). Let's hope that is not necessary.

Meanwhile I am all over the map emotionally. I have good moments when I can actually put this aside and function almost normally, even laugh a little or enjoy myself somewhat. Then in the blink of an eye I can just as easily plummet down to the depths of despair.

It's just so hard to believe that this could be happening. Even more so because it has certainly been one thing after another for quite a while now, to an almost ridiculous point. For the last year, each time I went thru something difficult, like waiting for the diagnosis or trying to choose what type of surgery to have...facing the skin necrosis...enduring chemo...each time I would try and focus on a spot in the future when it would be over. But I have yet to get to that place, as my readers well know, because something else always seems to happen. When I'm done with one disaster I barely have a moment to take a breath before I'm trying to get thru another calamity, one day at a time.

I'd like to say that I've learned from this not to put life on hold, to live in the moment. And to some degree I suppose I have gotten a bit better at that. But these relentless issues each feel so acute that it's hard not to become all-consumed by them.

So here I am, nearing the one year anniversary of my mastectomy (7/27) and I don't feel in the least like I've been able to put any of this behind me, even a little. In fact, I think these unending medical issues have dramatically had the opposite effect, I've barely even scratched the surface of dealing emotionally with the fundamentals -- like that I have cancer in the first place, or that I "lost" a breast.

(You know, I am not all that fond of saying I lost my breast -- for one thing it sounds like I misplaced it and the thing could eventually turn up...and for another, I did have reconstruction and tho that didn't turn out as planned there's still a reasonable facsimile of a breast on my chest, albeit much the worse for wear.)

Anyway...

I'm holding on as best I can and some days, heck, some minutes, it's harder than others. Today as I read the numerous well-wishes on the comments of my last post I felt lighter, a little stronger. That's a HUGE blessing. To all of you who made that happen, my deepest gratitude. You've made so much of this saga more tolerable, no small feat, I assure you. Thank you.

Dodging bullets

2010-07-05T16:22:00.000-07:00

I’ve read the last CT report myself now. It's not good. The original nodules “decreased in size and/or conspicuity compared to the last CT”. I take that to mean they might have decreased in size, or they may just be inconspicuous at the moment – like they could still be there exactly the same and are just not obvious this time around. But either way, the next part is what’s more important: “Bilateral pulmonary nodules, the majority of which were not present on the prior examination of 5/19/10, suspicious for (parenchymal) metastases.”

That word is on a report with my name on it -- metastases.

These new nodules came up quick…in less than 5 weeks. They have all appeared shortly after chemo, so despite all that poison pumped into my body they managed to develop.

I think I’m screwed.

From the day I first found the lumps there was a little part of me that thought I wasn’t going to live to be that ripe old age I once believed was a given. Yeah sure, everyone talks about how breast cancer is so treatable, that’s it’s practically a chronic disease. But that’s just media hype…it’s what people want to believe. And the idea certainly was that chemo would hopefully take care of any possibility for distant spread. Of course the truth they don’t want you to understand is that chemo only helps in about 30% of cases.

I guess it looks like I’m probably in that other 70%.

Once you have cancer you don’t take too much about life for granted. But still, I thought I’d have more disease-free time, you know? My fondest, most deepest wish was that I’d get to be around long enough so that Megan and Daniel would be grown up and on their own. But in my own mind, based on nothing scientific, I felt like it was a reasonable expectation to have 10 years. Okay, bare minimum was to have at least 5 solid years...by then Daniel would be Megan’s age now and I think she understands what she needs to in order to get thru what comes next…as much as any child can. But this is all happening way sooner than I thought…my Danny is still a baby to me now…not even 4 yet. It’s too soon for things to start going bad. I realized yesterday that I’ve been dealing with this for half his little life, he doesn’t remember a cancer-free mom. I wanted him to have more of a life with me being well. Every time I look at him, at both of them, my heart shatters and I cry. They’ve seen too many tears. Meggie keeps saying she thinks it will be okay. That it wouldn’t be fair if it wasn’t. How do I explain to a barely 9 year old child that life isn’t always fair, in fact, it can be incredibly, cruelly unfair?

If this is a metastasis then it is also fast growing and it sure didn’t seem to be effected by chemo. All that poison and these things popped up anyway. So while there are women who still manage to live for a “decent” amount of time with metastatic breast cancer, if you ask me, these fast growing suckers don’t bode well for me being one of them.

I had the PET scan Friday. The tech was a nice woman, we chatted about this and that beforehand, we had a few things in common. After the scan I swear her demeanor changed, but like she was trying to make sure it didn’t seem that way. Just like the mammogram tech’s manner changed last year, and the subsequent ultrasound tech…and then finally the radiologist doing the biopsy. They all knew but couldn’t say. I think the woman yesterday knew too.

But then again, maybe I’m crazy. I want to be crazy.

I can’t tell you how hard this is. I keep searching for some hope, I keep trying to figure out a way that this is not happening. Maybe this is not happening. I don’t want this to be happening. I find myself begging, please, don’t let this be happening.

I would like to keep hoping but I’m afraid to set myself up for being emotionally annihilated. And in my quiet moments of pure thought, like the center of a storm, the way this looks now is if by some miracle it turns out not to be lung metastasis I will have dodged the biggest bullet of a lifetime.

It's not looking so good

2010-07-01T09:11:00.000-07:00

There is news, not definitive news but not good news. Here’s what I know:

The 2nd pulmonary doc received the written CT report yesterday but not the film disc itself – he won’t get that until today or tomorrow. The report says the original nodules may have decreased in size, but that there are now many new ones. He wants to review the films himself but he did suggest it looks like I might need a lung biopsy.

Saw my oncologist today – a woman who is usually the type that thinks nothing is wrong, quick to blow things off. She’s not blowing this off. She wants me to have a guided needle biopsy. The problem is there are so many nodules now and they are very small. However one of the new ones is 9mm and the radiologist she spoke to thinks he can get a sample. There are risks…like collapsed lungs and maybe permanent damage of some sort. I don't know about all that yet.

Oncologist also wants a PET scan, not so much to look at the nodules further but to see if there is anything in my bones, liver or brain. Bottom line is if the cancer already spread to those places there’s no point in doing a lung biopsy too. Save me from an invasive test since I’m going to die anyway.

What’s the treatment for lung metastasis? Oncologist says nothing more than I’m doing now…ovarian ablation and estrogen blocking drugs. Since the cancer would have spread while I was on chemotherapy there’s not much point in doing more. I wonder if that’s true or if there are other drugs…clinical trials, experimental things.

There is still a slight chance this is nothing more than an inflammatory response of some sort to something, but no one wants to wait and see anymore.

This doesn’t look good right now. I have a really bad feeling.

Yet I also keep thinking it can’t be happening. I can’t really be dying. Not so soon. Women with breast cancer that metastasizes to the lung don’t typically make it past five years. And who’s to say what kind of quality of life one has during that time. What if this is really it, the beginning of the end? How do I do this??? How do I leave my babies??? HOW?

Gotta stop for now, sorry. Will post when I can.

Towering Inferno

2010-06-29T13:52:00.000-07:00

When I was in my early twenties the apartment building I was living in caught on fire in the middle of the night. I was able to get out unscathed, but had some scary moments during my escape. Waking up suddenly from a sound sleep only to see flames licking at your windows and thick columns of black smoke coming up thru the heating registers in the floor is a frightening experience, to say the least. I remember that everything seemed to move in slow motion and all the while I kept thinking, “This can’t be happening” – tho clearly it was. Even afterwards as I stood outside in the street and watched the firefighters try to control the 4-alarm blaze I kept having this feeling of reality being suspended; as if what I was witnessing wasn’t real.

Last year after I found the lumps in my breast it took several weeks to get a diagnosis. During most of that time I vacillated between thinking it would be nothing and fearing the worst. But even when I thought the news might be bad there was a significant part of my brain that reacted just like it did watching those flames burn my home…feeling like it couldn’t be real. It just couldn’t be.

But it was.

Now I’m waiting to find out if the pulmonary nodules in my lungs have grown…if the breast cancer has indeed spread. Perhaps as testament to either the power of hope or denial, I swing like a pendulum, back and forth, as to which way the outcome will go. On one level it’s hard to imagine more bad news coming my way…I mean really, enough is enough already, right? And yet on another level it’s hard to ignore the reality. Once your innocence is shattered it’s not as easy to maintain blind faith. I now know all too well that worst-case scenarios do happen. Buildings burn down. People get sick and sometimes cancer wins.

So I’m left wondering, am I merely standing here in a haze of disbelief watching the flames prepare to devour what’s left of my life, or do I get to escape the blaze again and regain some smidgen of a fundamental sense that there is goodness left for me in this world.

Oh, and let us not forget the third option…that while the nodules might not be a fast growing metastasis, they do end up still being there, same as before…their presence meaning I have yet more waiting to do before finally knowing with some degree of certainty if they are malignant or not…sort of like living in my own little corner of Purgatory rather than immediately being thrown into the definitive inferno much further south.

Meanwhile, this is me, still waiting…till next time.

Call waiting

2010-06-25T04:38:00.000-07:00

(This does have a happy ending)

When I went in for a retest after a bad pap smear my doctor recommended I have a vaginal ultrasound and some blood work since having breast cancer puts me at higher risk for various reproductive cancers. The u/s tech said that unofficially everything looked fine and I was relieved.

I was told to make an appointment to get all the official results from the doctor in person, but if everything was fine I’d get a call before that instead, in which case I was supposed to cancel the unneeded appointment. So I made what I call the “in case of bad news appointment” but promptly put it out of my head. The second pap smear had come back clear and since the tech said the vag u/s looked good (and since I’ve got lung nodules to worry about) the whole thing slipped my mind.

Until yesterday.

Yesterday I got a call to confirm my “in case of bad news appointment”. My stomach dropped and I thought I was going to faint. I asked the woman who phoned if the doctor was there, I needed to speak to him. But he wasn’t in. So I asked for another doctor – any doctor. By this time I was crying. I told her I am a breast cancer patient and I know what needing this appointment really meant, that the news was bad. I begged her to please find me someone to talk to and get the results from by phone. She tried, I could hear the compassion in her voice – but there was no one there that was authorized to give, and I quote, “those kind of results” by phone.

I was supposed to go in today, but I had that CT scan for lung metastasis scheduled. The gynecologist and imaging place are too far from each other to go to both in the same day. Instead I was going to have to receive a call from the gynecologist on my cell, or wait the weekend for Monday. Neither choice was good, but I chose to get a cell phone call. Waiting an entire weekend was NOT an option.

After hanging up I sat in this house alone with my kids for the next ten minutes just weeping uncontrolably. After crying to Michael and freaking him out at work I called my mother, by that time, hysterical. She was outraged at how this was being handled. I felt that way too but was too upset to focus on that part of it. Mom asked me if she could call the doctor's office and try again to get the results. At almost 47 years of age I did the only thing I was capable of doing at that moment – I decided to go ahead and sic my 70-something mother on them. Apparently she raised holy Hell because within minutes the entire situation was resolved.

It was a mistake.

W.T.F?????

My ultrasound was completely normal. Completely. Normal. So was the blood work. It was, in a sense, a scheduling error. I was supposed to receive the “it’s nothing call” but mistakenly didn’t. So they were just calling to confirm the office appointment by default. The office manager phoned me to apologize. While I could have given her a piece of my mind instead I gave her a piece of my heart…I tearfully, VERY tearfully told her what I had just gone thru, that my young children had to see their mother become unglued yet again for nothing, my entire family was to be frightened yet again, for absolutely nothing. I said I don’t ever want this to happen to another woman. She promised me the system would be addressed.

What I went thru was excruciating, but in reality it lasted less than an hour. However in that hour I sure had time enough to consider many of the worst case scenarios...and now that I’ve had breast cancer, trust me, I have a bird’s eye view of what those kind of scenarios really look like, up nice and close.

I said this had a happy ending and it does, truly, for the most part. While at the moment I'm still reeling I am also hugely grateful beyond measure that this turned out to be a big fat nothing. The word relief doesn't begin to cover it. But sadly, happy endings aren’t quite what they used to be either. I'm still waiting for results next week about my lung scan. It seems forever more my happy endings will be diminished by the reality of just how temporary happiness can be, how easily it can disappear. All it takes sometime is a phone call.

What's new

2010-06-19T13:55:00.000-07:00

Lung nodules -- back to square one…

We got a second opinion from another pulmonologist and he says something different than the first doctor – but of course. I need another CT scan to rule out a fast growing metastasis…which he thinks it will do, but still, I’m back to waiting and worrying again. Not that I wasn’t already doing that since I was in a holding pattern till September’s CT to see if the nodules grew anyway. But now I will have a scan sooner and hold my breath to see if they grew fast – which would be really, really bad. On the other hand, they could also have disappeared (she said w/fingers crossed) – which would be really, really good. Hopefully I can get the CT & answer next week. This second pulmonary guy is a cancer survivor himself so he won’t keep me waiting for results, at least on his part.

More medical stuff…

I’ve been having trouble with my eye…something called recurrent erosion. I had a corneal laceration about a dozen years ago that acts up sometimes – and it chose now to do so. My body has really bad timing lately. Understatement.

About that house we were buying…

It all fell thru, and truth be told we’re kinda relieved right now. It’s a long story (um, what isn’t in my life) and it came right down to the wire in a nail biting finale. But the bottom line is we’re way better off. For now we stay put.

However someone is moving…

My mother sold her house and is moving in a week! She’s renting an apartment until she finds the right condo. This has added some chaos as you can imagine. I am glad tho, as even her little house with it’s little yard was beginning to be a bit much for her to care for. Also, she’s going to try and find a place closer to us…it’s about a 40min drive to her town now.

Thus ends the updating…

Beyond that there’s not much to tell. Okay, that’s not really true…there’s always more to tell and I’m usually up for the job of telling it and then some. Lately tho I just feel sort of on hold and more than a little preoccupied. But I wanted to put up an entry since it's been a while and so I’ve filled it with all the newsy bits and probably little substance. It will have to do for now, better than nothing.

So, till next time, this is me hanging in there…waiting….

It's not bad news...

2010-06-01T15:23:00.000-07:00

Just got back from seeing the pulmonary doctor, and while it's not perfectly wonderful news, it is totally not bad news either.

Definitely NOT bad.

According to him based on the CT scan there is nothing about my pulmonary nodules at the moment that appear specifically cancerous. The plan is to wait and watch them. Sometimes pulmonary nodules are immediately suspicious and have clear cancerous characteristics such as irregular edges. In those instances they require biopsy or surgery for confirmation right away. But some nodules, like mine, don’t possess any obvious criteria that indicates cancer. Plus mine are small enough that doing a needle biopsy is challenging and no one wants to start slicing into my lungs if the little buggers are a big fat nothing. So instead they monitor them to see if they change, if they grow. These nodules could be completely benign, could have been there for years without me knowing it. But unfortunately a pulmonary nodule that doesn’t start off looking suspicious can also still end up being cancerous eventually.

So if these nodules stay the same size they are considered stable and not likely to be any kind of threat. If they grow…well, that would be bad. I will have a CT scan in 4 months. Assuming they haven’t grown then my understanding is the CT scans continue every 3 or 4 months for two years. After that if there is still no change they cut back the scans to once or twice a year. For how long I don’t know. Oh, and the doctor said if it weren’t for my breast cancer history we’d only do the scans every year right from the start – even tho I am a former smoker. So they are watching me more carefully which somehow makes me feel both better and worse, you know? Like I’m comforted to know they are on top of this but nervous they think that’s necessary.

Over all the doctor was very positive…said he really doesn’t think this will turn out to be cancer. However, when asked, he said he can’t say for sure it isn’t. But he did repeatedly stress that in his opinion it won’t go that way. I want to hear that from another doctor so I will be getting a second opinion, just to be thorough and to ease my mind a bit further.

Like I said – it’s totally not bad news. It’s almost good news. Short of finding out the little buggers had disappeared, it’s probably the best news I could hope for. I guess I should be happy, but I think I’m still sort of processing this…it hasn’t sunk in yet. I’ve been so upset, so terrified that I think my body hasn’t fully come down from high alert, if that makes sense. And despite the positive outlook of the doctor it's hard not to see this as one more thing hanging over my head.

I need a vacation.

Last but by far not least -- I’m going to post personally on the comments thread from my previous blog entry but wanted to say a big gigantic thank you here till I get a chance to do that. People talk about how strong I am – and if there’s any truth to that I can honestly say a huge source of that strength has been this blog and the astonishing people who come here and lend me their compassion, support and love. It’s hard to describe how a disparate group of essentially strangers can make such an amazing impact on one life…but you each have, you’ll never know how much. Everyone who has ever offered me their kindness has made a difference, has touched my heart when I needed it most. You are all important to me and have carried me along when I thought I couldn’t go on. Thank you…thank you…thank you.

Here I go again

2010-05-28T10:08:00.000-07:00

I don’t want to post this. I don’t want to be this person, the one for which every thing seems to go wrong. But apparently I am.

A recent CT scan shows there are two nodules on my lungs. I don’t know much else right now because I went into shock when the oncologist told me last night. I vaguely remember asking about lung metastasis and her saying that this would need to be watched for the next couple years.

Years???

It almost sounds like I didn’t/don’t have pneumonia. I saw a pulmonary guy when I was first diagnosed with the pneumonia, and he’s the one that ordered the second CT which I understood was to rule out lung damage from chemo. I wasn’t all that concerned…I mean, it seemed more like a sickness kind of thing, I ran a bit of a fever and just a few days after the antibiotics were finished I felt better. Not all better, but significantly improved.

Now from the sound of what my oncologist said this might have nothing to do with that…or maybe it wasn’t pneumonia in the first place…or…I don’t know – I’m totally confused.

Thanks to Google I know some key questions to ask when I see the pulmonary guy again on Tuesday. I also now know that it’s very possible to have no definitive answers with pulmonary (lung) nodules as my oncologist seemed to be saying…that these may be in fact a wait and see, watch if they grow or change kind of thing.

I’m not sure I can take some kind of “wait and see” crap.

I’m not sure how to make it till Tuesday.

I’m not sure how much more of anything I can take.

I wish I could leave that last “cancer-free” blog entry up here. I wish I could still be the woman who posted that. But I’m not. Right now I don’t even feel like the woman who started this blog…I’m certainly not the woman I thought I’d be at this stage of my life.

I don’t know who I am. I just know I have two nodules on my lungs. And that I want to scream and smash something.

A totally cancer-free post

2010-05-19T18:39:00.000-07:00

TEN THINGS ABOUT ME:

I am both a neat freak and a slob –like I’ll complain that Michael didn’t put the tea back exactly where it belongs when the entire kitchen looks like a bomb hit it.

I have no hesitation about public speaking whatsoever. I’ll address a crowd of just about any size in a heartbeat.

I love cemeteries -- I espcially like to find a quiet spot where I can just sort of gaze out over all the headstones and the grounds…for some reason a cemetery view always seems to inspire me to write poetry.

One of my favorite songs to sing is Amazing Grace – yet I’m not Christian. Oh, and if I hear it played on the bagpipes I become a sniveling puddle.

My favorite place to be in the world is Cape Cod, Massachusetts…particularly Wellfleet or Provincetown. Spending time traversing those windswept dunes or strolling the quaint cobblestone streets fills me with a sense of belonging and peace.

If I had to choose one last meal it would probably be a burger, fries & chocolate shake (the vegan versions, of course).

Summer is my least favorite season – I absolutely hate the heat. Autumn is my favorite time of year.

Parting with books is very hard for me… I’m trying to be less sentimental and have managed to give away a few, but books are like old friends -- even the ones that I’ve outgrown are hard to part with because of the memories.

I’ve only left the country twice – both times to Canada. As a kid I spent two weeks in Ontario and then after graduation I spend three months working as a nanny for a wealthy family in their Quebec summer home.

I actually like cloudy, gray days almost more than sunny ones. There’s something about the way other colors pop against a silvery gray sky that speaks to me aesthetically.

Thanks so much to lovely Lesa at Always Summer who gave me the two awards below, I’m honored – and I also can't tell you how good it was to do a fun post having NOTHING to do whatsoever with breast cancer -- gosh I really needed that!

Now I’d like to pass the awards on to the following fantastic blogs:

Already Pretty
The Small Fabric of My Live
Utah Savage
Ephemera
The Blue Kimono
Tessa Scoffs
La Belette Rouge
notSupermum
The Writing Instinct
Shallow Coffee
Brenda's Blog From Paraguay
Udarata Kella
Inside Out Style
Goodbye to Boobs
Stumble Into Style

Beautiful Blogger Award rules: - Thank the person(s) who nominated you and give a link to their blog. Copy the award and paste it to your blog. Pass this award on to 15 fantastic bloggers you have discovered.

Rules for Sugardoll award: Thank and link the person who gave you the award. Pass this award onto fabulous bloggers of your choice. Contact said blogs and let them know they've won. Re-post and state 10 things about yourself.

Luckily, I have pneumonia

2010-05-07T18:05:00.000-07:00

I guess chemo wanted to have one more parting shot at me. I've probably been battling this for a few weeks now but the doctor kept saying my symptoms (shortness of breath, slight chest pain) were side effects from the chemo. I should have insisted on getting things checked, but I wanted to believe her.

However a couple days ago I started to run a fever on and off and I realized that can't be good. The nurse practitioner thought ruling out a pulmonary embolism would be a good idea due to my genetic history and the CAT scan showed I have pneumonia instead. I should have listened to my gut and been more proactive.

I'm on antibiotics and resting...feeling pretty miserable. But compared to the last time I had pneumonia 9 years ago, this is a picnic. Although the end result last time was hard to beat :)

One thing after another on this journey, huh? It's almost hard to fathom. Yet recently there have been a few women I know of in the breast cancer community that have received more troubling news of varying degrees. So when I went back to the doctor's office after learning the CAT scan showed no blood clot and the doctor greeted me with, "As you know there's no clot, but we did see a little something on your lung," I totally froze and immediately thought the worst --as in lung metastasis. When he then said the word pneumonia I wanted to kiss him...or kick him, either way, I was relieved.

So I'll take pneumonia. I'll take SVT's and necrosis...I'll take all the lousy side effects chemo has plagued me with. I'll even take lymphedema (reluctantly). Yeah, I know, it doesn't work that way, a lesser evil today doesn't mean I get a pass on a greater one around the corner. But right now I'm actually feeling pretty lucky to have pneumonia. How often can one say that?

And then, there are miracles...

2010-04-27T09:45:00.001-07:00

Today is the one year anniversary of my stage II-b cancer diagnosis. The day after tomorrow I will go in for my very last chemo infusion.

Despite that auspicious ending I am still immersed in the treatment phase, with another segment to begin in about 5 weeks -- when they will begin chemically shutting down my ovaries every month and start giving me an estrogen suppressing drug, Armidex, a process replete with its own set of side effects. Assuming I tolerate it well, I will take that drug for many, many years to come.

Not to be a party-pooper, but it's hard to feel like celebrating and I have felt of late either chaotic or despondent....with occasional breaks of anger and numbness. But then this morning I came across this:

http://www.nytimes.com/2010/04/27/health/27case.html

It's a wonderful piece in The New York Times by a woman who has not just survived, but thrived for 17 years with Stage IV breast cancer. She posts yearly at the BreastCancer.Org message board on the anniversary of her diagnosis to let her other Stage IV sisters know that she is still here.

It goes to show you, as she said, you just don't know.

A pink bucket load of crap

2010-04-20T10:30:00.000-07:00

I haven’t gotten up on my soapbox too often about breast cancer matters. It’s not that I don’t have a few choice things to say, it’s just that I’ve been a little consumed by my own personal journey at the moment. I figure there’s time for me to mouth off later ;)

But this recent development just got me so pissed I have to write about it.

The new ad campaign from Kentucky Fried Chicken (KFC), called “Buckets For The Cure” is such a glaring example of pink washing that at first I thought it was an SNL comedy skit. When I realized it was real, and that KFC has partnered with Susan G. Komen, a well-known name in breast cancer research, I was completely incensed and aghast. The fact that this also coincides with KFC's introduction of the "Double Down" -- a brand new deep-fried chicken, bacon & cheese concoction that reaches unparalleled heights in fat-laden debauchery, well, that just adds insult to injury.

To say there is a plethora of research out there linking obesity to breast cancer would be an understatement. Not to mention anyone with half a brain knows that consuming fast food on any kind of regular basis is a health hazard that contributes to the growing obesity problem. The absurdity that Komen would pair with KFC like this is simply outrageous.

Clearly money for research is paramount. No doubt I have personally benefited from breast cancer research since even just a mere five years ago a woman with my exact type of cancer mightn’t have had the same prognosis I have now. I’m a realist, I get it. But this is ridiculous – it’s going too far.

Here’s the truth – breast cancer isn’t one disease, it’s many. And there will be no real cures until the causes are found. We keep finding ways to beat the cancer once it’s there, and we keep finding ways to detect it earlier, but what we really NEED to do is find out why the rates are increasing so rapidly (early detection just doesn’t account for it).

Obesity is directly linked to breast cancer and the bitter pink irony is that Komen has supporting research showing that. Heck, I wouldn’t look a gift horse in the mouth, I’d probably take money from just about anyone if I thought it would mean my daughter might not get this despicable disease. But to be part of this money-making ad campaign, to in any way encourage more consumption of products that can be clearly linked to increasing breast cancer rates not only defeats the purpose, it is just downright stupid, irresponsible and utterly disrespectful of every single woman whose life has been touched by this disease – which is pretty much all of us since one in eight women will get breast cancer in their lifetime.

Shame on KFC. Shame on Susan G. Komen.

Do me a favor, kick the bucket and kick it hard. Don’t be a party to this shameful marketing campaign. That would be a better way to honor those of us battling this disease.

Thanks.

Out of the mouths of babes

2010-04-17T13:14:00.000-07:00

The day before yesterday Daniel hugged me tight and said he wished I would never die. Then he looked at me intently and asked me if I was going to die soon and stop talking, because, “…when you die you stop talking forever ever.” I told him that this was true, when you die you do stop talking. I asked him where he heard about dying and the answer wasn’t clear. Though we’ve had many conversations about cancer I don’t talk about my death to him as I think it would be confusing and beyond his age, not to mention totally unnecessary at this time. I’m all for openness with children, very much so in fact. But a 3yo doesn’t need to hear that this disease is capable of killing me, not that he could even grasp what that meant anyway.

He wasn’t upset in the least when we had this little exchange and as much as it could have been a bit poignant for me it was so out of the blue that I didn't have a chance to be taken aback. I suspect that although his description of death was pretty apt I don’t think his concept of “forever ever” is quite the same as an adults.

Now Megan is a completely different story -- she has a significant understanding of this saga, but she’s 8 ½ and obviously needs to. She knows that some women die of breast cancer and some survive, and that Mama is going to try and do everything she can to have a very long life. But I also wouldn't want to mislead her into thinking that once I'm done with treatment I'm cured and this can't ever come back -- so I have told her that this might be what I die from…eventually -- or it might be something else. Either way, it certainly won't be today and not for the near foreseeable future.

Meggie saw pictures of reconstructed breasts before my mastectomy in preparation. She watched with fascination as my visiting nurse change my bandages for months as I dealt with skin necrosis. She has seen me suffer physical pain, seen me cry, seen me deal with anxiety, and no doubt been aware of me sometimes feeling like I wanted to give up on my worst days. But more importantly she has also watched me get up, get dressed, put on my wig and go for treatment anyway. We have talked about everything along the way and any discussions have been at her comfort level. I must say, regarding my cancer journey she is incredibly astute beyond her years. I firmly believe that keeping children in the dark is a mistake – they need to know, in an age appropriate manner, what is going on. The unknown, the hidden, the secrets are what make children afraid. We grown-ups fool ourselves into thinking that we’ve managed to protect or shield our kids and we rarely do. As my grandmother used to say, “Little pitchers have big ears.”

Before I had Daniel there was a time when I dealt with some deep depression and acute anxiety in front of my daughter, it was impossible to hide it from her. Even in the midst of my emotional crisis her father and I managed to talk to her and explain to the best of our ability how I was feeling and what it was all about. She also saw me get through that only a little the worse for wear in the end. And I think it taught her something important. Sometimes when faced with certain challenges people fall apart – and that’s okay. Ultimately they heal, they move on. It’s a lesson I wish I’d known at a young age. I was always afraid that I would break, that each crisis or tragedy would be “the one”…the thing that destroyed me. Sometimes, very often lately, I admit I’m still afraid of that. But I try to remind myself that falling apart doesn’t negate strength and life rarely breaks anyone. We fumble through it and keep going.

And my Meg comforts me sometimes by reminding me of that past episode…wise little creature that she is. She says, “Remember how bad you thought that was, and yet it was okay, you learned to deal with it and things got better. Cancer is just like that, Mama, you’ll see. I know it.”

As for Daniel, I told him that I wasn’t going to die for a long, long time. He said, “Good. Can you fill my juice cup, pease?” And so I did. Because there are always juice cups to be filled. There are always little things that need doing and I’m their mother so I do them…not their mother with cancer…just their mother. And that is always a huge part of what gets me through.

A year ago today...

2010-04-01T05:50:00.000-07:00

...on April 1st, 2009 while touching my breast as I was about to nurse my son I felt a bean-sized lump. I tried not to worry, thought maybe it was something breastfeeding related, but knew I needed to get it checked right away. My primary care doc is less than a mile from my house so I decided to just show up first thing and get a script for a mammogram. As I sat at my dining room table the next morning waiting for her office to open I continued to absentmindedly feel my breast. It was then I found the other two lumps. I looked at my husband with sudden clarity and said, “I’m screwed.” It took 26 more days to get the diagnosis of invasive ductal carcinoma.

Since that day last year I have had a mastectomy and reconstruction, discovered the cancer spread ever so slightly to my lymph nodes and have gone through the wound healing process from Hell thanks to skin necrosis. I experienced an SVT after port placement, had almost a dozen chemo infusions and now have been diagnosed with lymphedema. To say this last year sucked more than any other year of my life would be the understatement of all time.

But I’m still here. My kids still have their mother.

That doesn't mean I am positive or grateful or even contemplative. That doesn't mean I haven't cried my eyes out a dozen times just this week alone. It just means that I know I have to hang on, there isn't any other alternative.

So today I will go to the infusion room at the hospital for treatment and joke around with the nurses and all my chemo comrades. We’ll hang out in our vinyl recliners while poison drips into our veins and we’ll laugh…because we always do.

Yup, today I will laugh, and for at least right now, that will have to be enough.

Farewell to Thistle Dew

2010-03-28T10:07:00.000-07:00

So, amidst my various health issues there's been an additional saga going on regarding the house we're buying . One thing after another has delayed the purchase. But as of today we are looking at a closing date of around mid to late May (barring anymore unforeseen glitches). All this means we will have to pack up 16 years of our life here at the cottage in a matter of about six weeks. It seems an almost impossible task.

This is actually the longest I have lived anywhere. From the time I first left my parents home at 17 until I came here at the age of thirty I moved over ten times. Of course, I wasn't moving in and out of houses, just apartments or back home with the folks...and I didn't have two kids to pack up back then either so I traveled a little lighter. But clearly I'm a little rusty at the whole moving thing now after all these years of staying put. Guess you could say this stone has gotten quite mossy for lack of rolling ;)

The process of packing inevitably inspires a few trips down memory lane as you dig around the dark corners of basements, attics and closets. You can’t help but start thinking about your past, good bad or indifferent. That will be an about face for me of late since everything has been so hyper-focused either on the immediate present of illness or the uncertain future of questionable longevity. Perhaps as nerve-wracking as this moving ordeal will be it might also serve as a good thing -- a welcome change of perspective as I look backward for a little bit. It will be a chance to sort thru some of the junk, both literally and figuratively speaking.

I remember when my mother sold the home I was raised in. While I loved the gracious old house itself and I do have some fond memories growing up there, there were also quite a few recollections I would have gladly not packed up and taken with me. But even with all that, I still found myself feeling very emotional as I stood in what was my old childhood bedroom, the last one to leave the house on the closing day. I whispered goodbye aloud because it felt like the house needed to hear it as much as I needed to say it. For a long while whenever I drove by the street I couldn't look, couldn't bear to see the evidence of someone else living in my home.

My late grandmother kept the house she raised my father and his sister in till the day she died. That house was her life and her love for the place and determination to stay there are actually what killed her in the end. Well into her 80’s and not very surefooted due to knee problems, she fell down the stairs and died of her injuries a few days later. It was a shocking end and seemed so preventable. In fact all of us had tried to get her to give up the home, to move into some sort of assisted living arrangement or even just a single floor condo or flat. But she had packed the house from cellar to rooftop with trinkets and treasures…almost to the point of being a hoarder. And then there were her cats…if you were a stray within a 50 mile radius you knew to go to Hazel’s house – at one time she had nearly a dozen cats. She just couldn’t imagine limiting the population of either felines or material objects to fit into a smaller space.

After she died, some in my family were filled with regret and remorse for not having tried to force her into leaving, myself included. But in retrospect I think her life ended as she would have wanted. The prospect of uprooting her self and her belongings might have proven worse and hastened her death more than the fall. She died in her beloved home. That is where she wanted to be after living a long and full life. That is how she wanted to die. I understand that more than ever now.

I’ve never felt quite that way about any place I’ve lived, you know, loved it so much that I would make such a significant sacrifice. But I can imagine feeling that way very easily…I’ve always been a born romantic when it comes to houses.

The house we live in now is a wonderful little place, but it never quite felt permanent…it was supposed to be a starter house though we ended up staying way longer than we originally intended. In fact we actually tried to move once before, years ago. We had a buyer at the ready but when we began hunting for a new house it quickly became apparent that even by spending more money we wouldn’t be able to find anything that we liked all that much better in our price range at the time.

After we’d returned home from what ended up being the last day out with the realtor, my husband stood in the driveway, looked at the house and said what I thought was, “Thistle dew.” It took me a few minutes to realize he’d actually said, “This’ll do,” as in this house would do instead of moving. From that day forward our little home was named Thistle Dew Cottage. It fit. All these years we’ve thought it wasn’t grand or very special, but it was fine, it was quite nice. It would do.

And now it is finally time to say farewell. Some of the very happiest times of my life have been spent in this house...both my children were born while we lived here and Michael and I started our married life together shortly before we moved in. We've surely faced our share of challenges and weathered storms here too, especially this last year. This house has contained it all, it's part of the very fabric of our memories, the background for the most important moments of our lives, good and bad. And even though we are moving up, going somewhere bigger and better it will be very hard to say goodbye. Thistle Dew Cottage turned out to be special after all, just by virtue of being our home, the place where our lives happened around us. Within these walls a family was created. I will miss this place and hold it in my heart forever.

Onward

2010-03-18T16:56:00.000-07:00

I’ve been, you guessed it, researching (don’t I always) and finding out as much as I can about lymphedema. Knowledge is power. Feeling empowered takes back control to some degree and that is comforting, at least to me. Plus it ensures that one has the best chance of getting the right treatment.

So, what is lymphedema in a really brief nutshell? My limited understanding is that it’s caused by an obstruction of the lymphatic system, in my case due to removal of 2 lymph nodes as part of my breast cancer surgery. The lymphatic system moves fluid around the body that the circulatory system doesn’t. Unlike the circulatory system that has it’s own pump (the heart), the lymphatic system is more delicate and vulnerable. So lymphedema is not an excess of fluid but rather an obstacle blocking the flow, so to speak, and resulting in chronic swelling. Up to 20% of all women treated for breast cancer develop lymphedema and their risk for doing so is lifelong. There is no cure, only varying degrees of successful management of the swelling and symptoms.

At the moment my arm shows no “back up” of fluid (determined via a meter called an ImpediMed L-Dex™) which is good news, and any swelling there is so slight as to be questionable. However my trunk, specifically my reconstructed breast, my adjacent side and part of my back are all slightly swollen. Now, they have actually been swollen since the surgery and truth be told I’m not sure the area is any more swollen than it was before. Unfortunately the meter can’t be used for truncal lymphedema so there’s no measurement of fluid. But I am having new sensations there such as pain and fullness that had a sudden onset – that combined with the onset of significant pain & sensations in my arm, as well as the fact that my breast and side are still swollen long past post-op and it all equals the diagnosis of lymphedema.

The management of this consists of multi pronged approach.

First of all there is something called MLD (manual lymphatic drainage) a process whereby a specially trained physical therapist (PT) employs a massage like technique by gently sort of stretching or moving the skin in specific directions to help redirect the lymph fluid towards unaffected nodes in other areas of my body (like my opposite armpit, the groin, etc.) It’s a slow process and my sessions take over an hour. It is not unpleasant, but it’s also nothing like a regular massage – that would be too rough and could damage the lymph vessels which mostly sit sort of under the skin. I will be learning to do a version of self-MLD and will need to do it anywhere from 3X/week to daily…forever.

Besides MLD, compression devices are necessary to keep the swelling down and help encourage lymph flow by sort of passively pumping the skin as you move. These range from cumbersome and elaborate wrapping procedures using foam and bandages to simple elastic-like full length sleeves for the arm and gauntlets or gloves for the hand. For truncal lymphedema the range of compression devices can be anything from special compression bras, binders or vests to lighter compression garments akin to shapewear (think Spanx or Flexees)

Because I am at risk for fluid build-up and arm swelling due to my symptoms and the existing swelling in my trunk, it is recommended that I wear a compression sleeve and gauntlet for a few weeks and then reassess. From now on I will always have to wear it to exercise, fly on a plane or a few other selected high risk circumstances depending on the degree of swelling or lack thereof.

To be honest, after I was fitted for my sleeve/gauntlet I cried all the way home. It is uncomfortable and ugly and I hate it. It looks sort of like an ace bandage and it goes from the top of my arm all the way down to my knuckles. It is my fondest hope that I don’t have to wear it all the time forever. Some women do.

I am also going to be fitted for a compression bra and am presently experimenting with finding the right compression camisoles for hanging around in. The camisoles aren’t too bad so far but the bras don’t look promising. My PT will need to assess whether or not the camis are enough compression or if I need to wear the bra.

I am trying to keep an open (and calm) mind.

The third prong of the treatment is exercise, particularly specific movements that help sort of pump the lymphatic fluid in an alternative direction towards other nodal locations as well as increase muscle strength and range of motion. So far they have been easy enough and I don’t mind doing them, though they need to be done several times a day and it's time consuming.

At this point I have not seen any difference in the swelling, but my discomfort and pain has decreased somewhat so that’s something.

The PT sessions are only twice a week now because I just can’t go any more often what with chemo. It’s at the same hospital I had hyperbaric treatments at…a 40min drive each way. Add the 75 minute session and once again an aspect of cancer treatment has become a part time job.

I am very tired.

My body image is already a wreck between the badly scarred and misshaped reconstructed breast, not to mention the weight gain from chemo (steroids are part of the cocktail) and being totally bald…the thought that either I will possibly swell to a level of disfigurement or have to wear VERY uncomfortable and unattractive garments forever just plain breaks my heart. But since I was proactive and aware and caught this early there is still some chance that with therapy I will be able to achieve a level of control whereby I need only wear lighter compression camisoles and don the sleeve just for special activities or flare-ups of swelling…especially if I am super diligent in all my self-care and risk prevention.

There is a small degree of hope yet worth hanging on to here and trust me, I’m grabbing it with both hands and holding on for dear life.

Thanks for reading…till next time…

hitting the wall

2010-03-11T13:19:00.000-08:00

I have lymphedema, specifically stage 1 truncal lymphedema. I’ve been evaluated and had some physical therapy sessions with many more to come. There is no cure for lymphedema, only management of the swelling – sometimes the swelling can be reversible if caught early, but the lymphedema itself is a chronic condition that is potentially disfiguring and will require lifelong managing.

And that sucks.

Every day I cry. Every day. My depression is presently at a level similar to when I was first diagnosed with breast cancer…similar to the dark days I experienced right after my mastectomy. There are some portions of this journey I have managed to take in stride but this is not one of them at the moment.

Once my initial shock at being diagnosed with breast cancer wore off my innate desire, my goal if you will, was to do everything I could to get thru all the various components of treatment as unscathed as possible and come out on some sort of “other side” – to go back to a semblance of my former, normal life.

With the onset of lymphedema, on top of some of the other obstacles I’ve already faced, I’m realizing now that is not going to happen exactly as I hoped, it just can’t.

Cancer changes everything.

I’m not saying there won’t be a new normal. I will get past this eventually. Adaptation is the greatest gift we humans possess bar none. In fact as a woman without religion I’m often asked what it is I do have faith in and that’s it in a nutshell – our utterly miraculous ability to adapt, to transcend.

But I’m not there yet.

I was very touched by the amazing support I got from my last entry, knowing that so many of you understand where I’m coming from whether you have walked this exact road or not. There is a universal component to suffering; we’ve all had our challenges and had to work to overcome them. I thank you from the bottom of my heart for your compassion. Keep it coming, I need all that I can get.

Till next time, thanks for reading…

I'm having a hard time

2010-03-02T12:14:00.000-08:00

There appears to be no light at the end of the tunnel because there is no end to the damn tunnel itself. I am having symptoms of lymphedema and will be seeing the physical therapist on Wednesday. This is devastating to me. I can’t seem to catch a break.

I’ve postponed posting about this because when things are at their worst it’s sometimes hard for me to blog or even to socialize in person. In a strange way I feel like I’m letting people down by being so negative, so defeatist. But perhaps that’s not being fair to both myself and those who care about me, which is why I’m throwing this out there.

So, there you have it – I am neither strong nor positive at the moment. I feel panicked and scared and depressed beyond belief. I don’t want anything else to deal with, I feel like lymphedema is just too much for me on top of all I have endured.

I try to remind myself that there are those in the breast cancer community that have fared far worse than I, women that would envy my situation in general. I’ve read heartbreaking blogs during my journey written by women that, like me, were hopeful they would do their time in treatment and then move on…women who sadly aren’t here anymore. I’m still here. My kids still have their mother. I still have a chance to live. That is what I try to hold on to and most of the time I can. But right now I am having a really hard time.

Thanks for reading…till next time.

So far, so good -- I think

2010-02-17T10:13:00.001-08:00

Thought I'd give an update...

The Taxotere, as promised, doesn't seem to make me very nauseous, thankfully (YAY!). I felt a bit queasy on the first and second day, but admittedly some of that may have been nerves.

Speaking of nerves, so far I have had faint symptoms of some slightly numb toes on one foot and the side of my hand felt a little tingly. I say these symptoms are faint because at this point I can't be sure if they are my imagination or what. Truth be told it's possible I am being hyper vigilant.

Part of the reason things might be going better than expected is because at the last minute my oncologist switched me to a different infusion schedule. Rather than going every three weeks I am having weekly infusions...this means the drug enters my system in smaller doses at one time. It is supposed to be equally as effective and the same amount of Taxotere is administered over all, but in smaller quantities there has been some evidence of less side effects, such as the neuropathy I fear.

I am also going to be taking some supplements that have been shown to help combat neuropathy, such as increased B vitamins, Melatonin and the amino acid L-Glutamine (all w/doc's approval).

These frozen mitts are something I'm considering, too -- they look like boxing gloves that you freeze and wear on your hands during the infusion (or they have booties for you feet, as well). They have been shown to prevent fingernail loss, something else Taxotere causes, and the thinking is they may also protect the periphery nerves which are most vulnerable to damage from taxanes. However they are darned expensive considering you have to buy at least 2 pairs and there is concern that if used improperly they may actually hasten nail toxicity (and possibly nerve damage) by causing something called a vasodilation reflex -- in a sense if the gloves lose their coldness too soon it can cause an opposite reaction and open up the blood flow more, creating better circulation which is the complete opposite of what you want...so I'm not sure about using them. Additionally, the lymphedema therapist I saw suggested that prolonged exposure to cold can be a trigger for lymphedema, so I'm left wondering which would be worse, neuropathy or lymphedema...and which would be more likely? Don't know.

But otherwise, all in all as of now I am doing okay, which is great news for a change :D Tomorrow I go for my second infusion of 12 total. My last infusion is April 15th...not normally a day one celebrates, lol, but believe you me, it will be a freakin' huge happy day for moi!

That's it for now...until next time, thanks for reading!

Chemo, phase II -- wish me luck

2010-02-10T16:27:00.001-08:00

Tomorrow I begin phase two of chemotherapy, taking the drug Taxotere. I've just finished Adriamycin and Cytoxan which are supposed to be the worst part...however some women report that the taxanes (Taxotere, Taxol and Abraxane) are actually harder to deal with. Who knows?

I am probably more afraid of this regimen than the former because of the possibility of permanent neuropathy -- particularly in my hands. I fancy myself a writer, after all, and I need my fingers to to be agile enough for typing on a keyboard. The thought that after all of this I can't return to a normal life doing what I love....well, that hardly seems fair to say the least. But then again, none of this is fair.

Forgive the pity party, but it seems each leg of this breast cancer journey has had some huge hurdle, some unexpected turn of events. Major skin necrosis after reconstruction, an SVT after port placement and the worst nausea I've ever experienced after my first round of chemo -- despite all the assurances that the anti-nausea drugs work wonders. So is it any wonder I'm expecting the worst case scenario? As my oncologist says, I've been pretty beat up lately.

So...I am filled with dread, I don't mind telling you. But I'm forging ahead despite it. Okay, not exactly forging...more like limping ahead weakly.

Wish me luck (and you can call me Bitch, too, if you wanna)

A tale of five pregnancies

2010-01-31T14:06:00.000-08:00

As I struggle thru chemo I find myself reliving other episodes of survival in my life, particularly ones that required emotional endurance. In the forefront of my mind lately is one of the most difficult chapters of my life -- the saga of my struggle to become a mother.

We went thru years of infertility before finally having our two beautiful children. I started trying to get pregnant when I was 33, and after spending a frustrating year with no luck we began the search for medical answers. That process was to take us four more years.

Eventually it was discovered there were multiple yet simple reasons for our inability to conceive, and a couple months after a hysteroscopic procedure I miraculously got pregnant the "old fashioned way" as they say. It had taken three years by that time, only to sort of happen suddenly by accident. We were elated.

But sadly it was not to be.

From the start the doctor could tell there was a problem and he predicted I might miscarry. Then about a week before Christmas there was definitively no heartbeat. We were devastated. I suffered thru the holidays waiting for "it" to happen, but New Year's came and went and no miscarriage. I had some minor anatomical issues that made a D&C more difficult than typical and the fear was that my womb would be irreparably damaged if the doctor was too, shall we say, zealous. But a D&C was carefully performed...and unfortunately didn't work. I was still technically pregnant. The doctor thought maybe just the dilation of my cervix from the surgery would induce the miscarriage so we waited some more. And then some more. Finally as a last resort a dose of a chemotherapy drug was administered (ironic, isn't it?) Apparently this is a common practice for safely ending topical or tubal pregnancies that surgery can't be done for, so they hoped it would work on me.

Within a few days, along with being horrifically sick from the chemo, I experienced what to me was a very violent miscarriage. I'll spare you the details.

But here's the unbelievable part: it still didn't completely work. My hormones continued to be at pregnancy levels even tho the baby had been, without a doubt, no longer alive for quite some time. My body just wouldn't let go. So to add to my intense emotional torture it took months of intermittent bleeding, months of going for weekly blood tests before my hormone levels dropped back to normal...months of technically being pregnant with a baby that was long dead.

Torture doesn't even begin to cover it. To this day I cannot adequately describe the anguish I went thru, nor do I want to. There are just no words. I also try not to wonder now what that prolonged hormonal cocktail did to my body in terms of cancer -- I can't go there, I just can't.

After that it took us quite a while to even think of trying again. But eventually we got up our courage and stamina. We were duely rewarded...using IUI on the first try we conceived our precious Megan. While her birth was fraught with more drama, in the end I can say unequivocally it was SO worth every excruciating moment. Every single one of them. We are hugely blessed.

Because of everything that had happened we figured that was it. Why tempt fate? We had a healthy baby girl and we were a family. Megan would be an only child.

Then about 4+ years ago, Michael's union got locked out while they were negotiating a new contract. He was out of work a few months. He was home alot. We had more time together and, well, you know :) Suddenly, out of the blue at age 42 I found myself pregnant again! Once again, it was the "old fashioned way".

But once again, it was not to be.

As a high risk pregnancy each week we'd go for the ultrasound and hope for growth, hope to see the heartbeat. After just a few weeks it stopped. You can imagine our fear -- I could't envision going thru that awful ordeal again. Thankfully, this time the D&C accomplished what needed to be done. I was spared some of the suffering...some of it.

But that baby, however briefly it lived in my womb, made almost as much an impact on my life as if it had been born. Because if it hadn't been for that baby, for that unexpected pregnancy, I never would have thought about trying again. It made me think about having another child, opened my heart to the idea. I contemplated whether or not I could go thru all that I might have to in order to bring another precious child into our family and decided that I wanted to go for it, that I longed for another baby. If it hadn't been for losing that child I never would have tried to get pregnant with Daniel. That baby paved the way for the family that surrounds me today.

There was to be one more miscarriage in the process before Daniel was successfully conceived...but it too was medically uneventful, not even requiring a D& C. I can't explain now why a second miscarriage didn't daunt me more, why I kept going despite it. I remember looking at Meggie and thinking about how wonderful she was, how it would all be worth it in the end. Obviously I'm glad it didn't deter me every time I look at my beautiful boy now.

These three unborn children will always be a part of me and I love them, wouldn't trade their brief existence in my life if I could. They shaped the way their live siblings came into this world. (And might I add here that I happen to be pro-choice and am not trying to romanticize the biological realities -- clearly these pregnancies would have resulted in much wanted children.)

Finally, my last pregnancy....with Daniel it took two tries of IUI -- but then there he was, that precious little blip on the ultrasound screen week after week after wonderful week. I had some problems, all unrelated to eachother...minor ones in the first trimester and then the discovery of a potential major health issue later -- plus a few hairy moments at his birth when the cord was wrapped round his little neck 4 times! But all along tragedy was averted and Daniel is the beaming light of our lives...his father, sister and I adore him and feel like he was always here. We can't imagine our family without him.

When people ask me how many children I have I say two, of course. But each and every time I think of the others...the ones that in some sense heralded their brother and sister's arrival, the ones that taught me the meaning of healing and endurance, that showed me what I was really made out of -- strong stuff that bends and twists but doesn't break easily.

Big things happening...

2010-01-26T09:58:00.000-08:00

It’s a sad reality that by the time I start to feel human again it’s just a couple days till the next round of chemo and I find myself cramming as much “normal” into those few days as possible – time with my kids just being regular old Mama, time with Michael where he doesn’t have to take care of me, and time just to enjoy not feeling nauseous.

Thursday is round 4 and the last of this drug regimen. I begin four more rounds of a different drug a couple weeks after that. That will take 3 months. It’s daunting…very daunting.

But for a few moments I’m going to try not to think about all that and just write about something else, something not remotely chemo related. Something rather pleasant, actually :)

BIG THINGS have been going on and I haven’t had a moment to blog about them. Remember this house?

Well, we’re buying it!!! And we’ve sold our house – in fact we had a bit of a bidding war and even got a smidge more than our asking price, can you believe it? Good thing too, since the new house is in need of serious work. The present owner will likely have to replace at least part of the septic system, the hot water heater, cracked chimney flue and a few other things…we need to eventually replace all the kitchen appliances, all the flooring save for 2 rooms (living & dining rooms which are hardwood and just need sanding) plus pretty much redo 3 bathrooms. Oh, and paint…. lots and lots of paint.

The place is obviously a handyman special, but honestly that’s why we can afford it. Aside from all the updating it is a lovely and gracious home with 4 bedrooms, 2.5 baths, a huge kitchen plus a family room, living room and formal dining room. Oh, and a spacious, welcoming foyer, back mudroom and laundry on the 1st floor. It’s also on a great cul-de-sac…the location is truly stellar -- there are protected woodlands that go on for miles behind the house. Plus,check out this view from the back deck:

Well, that’s my news and about all I can manage right now, but I just HAD to share some happy stuff (for a change) with my beloved readers. Thank you for your continued support and best wishes, they are precious to me and my family, believe me.

Be well and wish me luck!!!!

Worth a thousand words...

2010-01-13T19:22:00.000-08:00

Round 3 tomorrow.

I'm still here.

To all the dear people that have commented -- your thoughts and prayers have meant more to me than mere words can say, my appreciation runs deep and I will never forget all your kindness. Know too that my children and husband have had their spirits lifted by the loving thoughts left here as well, and for that especially each and every one of you will forever be etched upon my heart in gratitude.

Thank you doesn't even begin to cover it, but I hope it will do.

Blessings to all...

Kayleigh

brief update

2010-01-01T12:19:00.000-08:00

Michael here. Kayleigh had round 2 of chemo today, she decided to give it another try. It's been a bit better, but she's still in pretty rough shape.

She has wanted me to update her blog for a while but I haven't had the chance, I'm sorry. She most of all wanted me to say thank you to all the people who have sent her love and best wishes. I've read her some of the comments from the last post and it really seemed to lift her spirits alot. All of you have been a great support for her so I thank you from the bottom of my heart too.

She'll be back to blogging when she can, probably won't be long if I know my wife :)

Hope everyone has a happy new year.

Michael

I had my first chemo!

2009-12-18T19:22:00.000-08:00

Finally.

And I swear there's a large part of me that thinks it may be my last.

It sucked. Really, really, really bad. Like I'd rather die of cancer bad. That is until I look at my kids. I've often used the expression that I would "cut off my right arm for my children". Trust me, doing chemo is the real life equivalent. But I don't know if I'm up for this. Even for them.

During the infusion their was a problem (but of course, nothing is simple) and I had to go across to the hospital to have a "port study" -- they thought perhaps my port was leaking. This would be very bad because the drug they were giving me can do alot of damage if it escapes the veins. But the port study showed no leaks so back to the infusion center I went.

I was told that typically nausea doesn't start for about 48-72 hours so we'd planned for Michael to go back to work and that way he would be home during the potentially worst part of it.

What's that they say about all the best laid plans?

When I got home I felt tired but otherwise fine...almost sent my mother home, but SOOOO glad I didn't. The vomiting began about 2 hours after I got home and continued, every ten minutes, for the next eight hours straight. We called the doctor for more anti-nausea meds...they were prescribed & given -- nothing. It finally got to a point where I was told that I would just have to ride it out and come back in the morning for IV fluids. Michael came home early and slept on the floor next to the sofa where I spent most of the night. My mother stayed in with the kids.

Today I have progressed slowly from all out retching to nauseous to queasy. I'm just so damned relieved to not be throwing up anymore I can't even begin to tell you. I went back to the infusion center and also got another injection, this one is to keep my white blood cell count up because I am doing dose dense chemo.

The bottom line is, across the board the general statistics are chemo only helps about 30% of people with breast cancer, even with all the individualized analysis of tumors, hormone receptor status and other various assessments...it still comes down to only helping about 30%. It also can cause irreversible damage in various ways, from congestive heart failure, neuropathy, even minimal brain damage.

I'm gambling with my life either way.

While I sat, sofa-bound, puking in a bowl and not caring whether I lived or died, I swore to everyone around me I would NEVER do this again. That's it, I'm done. I'm already a vegan health nut I'll just kick it up a few more notches, maybe even fly to Mexico and go to one of those alternative cancer treatment centers/spas...meanwhile let them rip out my ovaries and I'll start popping those estrogen blockers asap. The doctors at the NJ Cancer Institute as well as several others all said that in the end the most important thing I can do to keep the cancer at bay is to cut off it's estrogen supply...I'm lucky to be so highly hormone positive. Luck being relative.

Today, as I sit finally able to type without getting nauseous and I look at the pitifully concerned expression my husband wears on his face each time I catch him watching me...as my kids interrupt their all important playing to come over and give Mama a hug...right now I think that I will try another round...see if there is ANYTHING they can do to tweak my meds. Because I guess even with how awful this was (and I can't do it justice without being totally gross, trust me)...despite it all I'm too afraid NOT to do chemo.

Fear sits on both sides of me right now. It's not a good place to be.

I just don't know

2009-12-16T17:36:00.000-08:00

I don’t know when I will be starting chemo. I see the doctor tomorrow.

I don’t know who to trust anymore when it comes to all these freak medical issues. I am tired of this, tired, tired, tired. I don’t know why it seems my body is falling apart piece by piece, right along with my life.

I don’t know what to write, what to blog about. I just don’t know what else to say. But I had to say something.

So this is all I have.

I'm still here.

Heart problem postponed chemo

2009-12-04T09:05:00.001-08:00

This is freaking unbelievable...I mean, really, if there's a Murphy's Law just for breast cancer patients then clearly it is working overtime on me.

Went to have the port installed yesterday morning -- surgically all went well. Felt fine afterwards, no nausea, no real pain. The surgical center is about 1/2 hour away from hosptical where oncologist is. We got to the oncology office and ran into the chemo nurse, Eileen, in the hall. I like her very much, she is funny, smart and sweet. We stood there joking around for a few moments and then I went into the waiting room to hang out until they were ready for me. I was in good spirits. But suddenly my heart started racing. At first I thought maybe it was nerves coming on, tho I truly didn't feel anxious emotionally at all. But within a minute or two I realized this was not anxiety, something was very wrong. I told Michael to get someone and then all hell broke loose.

The nurses and doctors all looked worried (never a good sign) and they called the EMT's. Mind you, the hospital is across the parking lot and these people are medical professionals. To make a VERY, VERY long story short my heart rate reached 215 (normal is 60-100). I thought it would pound right through my ribs and out my chest like that scene in Alien. But emotionally I was calm...you know, other than being worried about what was happening. It was very strange. Eventually they were able to bring it down with some magical injection to just above 100 where it has stayed (hopefully) since then. I spent the rest of the day in the ER having tons of tests. I am now at home waiting for a cardiology consult and more tests. No chemo until they figure out what this is.

Chemo delayed AGAIN.

My feeling right now is that somehow this port has done something...it is placed in a vein in my chest, clearly this is what caused the onset of the symptoms. But no one knows anything. They are all scratching their heads.

I have a previous condition, Mitral Valve Prolapse -- but have had no symptoms in about 8 years. I used to smoke 2 packs a day and weight 300 lbs, no big surprise I had heart flutters back then. But this was more than flutters. I think this port placement aggravated something, triggered some sort of reaction. But no one seems sure if this is what it is.

Either way, I'm not anxious, not scared, I'm just getting totally fed up. The greatest risk of cancer recurrence is in the first five years. Getting treatment clearly reduces that risk. I NEED TREATMENT!!! It has been over 8 months since I found the stupid lumps.

Yet here I sit, waiting. Again.

Wigging out

2009-12-02T14:05:00.001-08:00

Tomorrow morning I go into surgery to have a port installed, and then off to have my very first chemotherapy infusion.

A port is a quarter sized disc that is surgically implanted just under the skin. A thin catheter tube connects it directly to a vein so meds can be given thru a needle inserted into the port rather than an IV in the arm. It is an outpatient surgery and supposed to be simple and safe. I'm frankly not thrilled about having it done the same day as chemo, but that's just how it worked out. I'm also not crazy about having yet another scar on my body thanks to cancer. Although compared to what my mastectomy left me with, this is nothing.

Switching gears...

On the house front, the first house I posted about is no longer an option. We actually made an offer but had immediate regrets and major doubts due to the road situation as I blogged about. However before we could withdraw the bid the owners accepted one from another couple anyway. It was not meant to be and I'm relieved. The second house, however, is still a possibility but let me tell you, it needs ALOT of work on the interior. We are considering it but would have to make a low offer so it might not work out.

Either way, all this house stuff has actually been very positive for me right now, despite the frenzy and confusion it has produced. For one thing it has given me lots of other stuff to focus on instead of chemo. Since we also put our house on the market we did a major cleaning from top to bottom and now I have a nice organized home to recuperate in to boot.

Today as my last preparatory act before chemo I went and got my wig. I chose the same shop my mother used in a posh upper-middle class town near where I grew up about an hour from here. I expected the shop to be nothing short of aristocratic and was quite surprised when it was completely the opposite. You went into the back door of a nondescript building and thru a dark hallway reminisent of what I would imagine a 1920's Speakeasy to be like. I half expected to have to give a secret password to be allowed in! It just never occured to me that many women would wish to keep this secret, that it was somehow shameful or embarrassing to wear a wig. The woman who ran the place told me that if I wanted to be discreet I didn't even have to use the full name of her shop on my check because it contained the word wig. It all made me feel sort of dark and gloomy.

The wig I chose is a close match color-wise, but the cut is completely different than I ever wear my real hair. This was per the owner's advice, the idea being it is less traumatic to use a wig of a different style because you won't compare it to your own natural hair. Makes sense, I guess. I'm not sure I like it, but then again it's hard for me to be objective right now.

I am dreading tomorrow. I keep trying not to freak...reminding myself that the chemo nurse assured me I would probably feel just fine tomorrow, nothing will happen right away. But the idea that I am pumping poison into my veins, chemicals strong enough to make my hair fall out...well, it's just damn scary. I mean, you want it strong, you want it to kill stray cancer cells for goodness sake. But I feel like this has already been such a long road, I'm weary and tired of this and want to move on, want it to be over. Yet I am realizing now it is just the beginning. Very soon, when my hair falls out, I will finally look like a cancer patient. It's real. I have cancer. Someday I will be a cancer survivor (if the fates allow) and will carry scars and battle stories with me into the future.

Not to sound Pollyanna, but hopefully sharing my experiences will in some small infinitesimal way help someone else who is facing a tough road, whatever it may be. Throughout my saga I've met so many women that have walked this path and each has generously shared their tales with me, to comfort, to inform, to help show the way. I thank them, and all of you, dear readers...all of you who are traveling right along with me. I can't imagine going this next leg alone.

Out of the mouths of babes...

2009-11-28T14:47:00.001-08:00

There's been all kinds of stuff going on in my life...chemo scheduled to start December 3rd, of course...less than a week now -- and then there's THE HOUSE. We took a quick look around and found a second house that we love (photos below). They are both very different, both have pros and cons. I could elaborate specifically but that's not really the point of this post

We have been agonizing over choosing which home to bid on. It's all complicatecd by my illness, naturally, so one might think I should forget the whole thing and wait until after chemo. Yet to let both houses go could be a serious mistake, they are singular properties and for us it turns out this is actually a pretty great time to buy, financially speaking.

I was talking to Megan (8yo) about all this...going back and forth, bemoaning my concerns, listing the positives and negatives. I've been driving myself crazy, truth be told. Last night in a fit of confusion at one point I lamented, "Good grief, Meggie, this is just the hardest decision I've ever had to make!"...to which she said, without missing a beat: "But Mama, I thought you said choosing between lumpectomy and mastectomy was the hardest choice you ever had to make?"

Indeed, I did. Indeed, it was.

Here I am going nuts over which home to buy. Heck...this is nothing. Aside from the fact that I'm blessed as all get out to even have such options available to me, let's face it -- any choices I ever have to make after the one I made this past summer pales by comparison...it is SO not worth freaking out about. This is just life. And the point is it goes on no matter where I live.

Damn smart kid I got there.

PS: Okay, I know that house looks positively massive, and it is a larger home...but it also needs major updating, which is why it's even remotely in our price range.

It's finally time

2009-11-21T09:29:00.000-08:00

I knew this day was coming, but on so many levels I have been able to ignore the inevitability.

MY WOUND HAS FINALLY HEALED.

If you saw pictures of my gaping flesh at its worst and compared them to today, you would be amazed. The human body is extraordinary. Mind you, I am still disfigured, but so much less so than I could have imagined. And there is more healing to do...scars will fade, indentations will fill out. One would hope in terms of my mastectomy reconstruction that the worst is over.

But this wound closing also means I can start chemo now. The week after Thanksgiving I will begin poisoning my body in order to make sure no stray cancer cells that may or may not be lurking can ever survive to set up housekeeping -- or at least that's the hope, anyway. Today I am a completely healthy woman with a full head of, yes, I'll say it -- pretty darned nice hair. Within about two weeks time that will all change dramatically. I do not know, nor can anyone predict, how physically devastating chemotherapy will be for me.

During the last few weeks there's been a flurry of doctor appointments to various oncologists that I haven't blogged about. There's been some choices to make between two different drug regimens, along with dosages and actual locations for treatment.

I will receive my treatment at the local hospital, the doctor there is as good if not better than any of the rest, trained at Sloan Kettering, etc -- plus it's only about 15 minutes from home (either home, btw).

I have reluctantly chosen the potentially stronger of two different drug regimens, meaning it will take longer and could possibly make me sicker, cause more side effects -- but it has a better proven track record. However there is one drug of the three that I may use the newer version of in hopes that it will leave me with a lessened risk of permanent side effects -- particularly my greatest fear, which is neuropathy.

It has also been suggested that I take the first phase of drugs in shorter rounds, as in every 2 weeks. Although that leaves my body less time to recover between rounds it might have a higher success rate. This is called "dose dense". I haven't decided that one yet. I think I might try it -- I can change my mind at any point and slow down the time between rounds if my understanding is correct. There is a slight chance of heart problems with one of the drugs and I need to know if dose density increases it. Although because I am young it is believed to be a very, very low risk.

The particular chemo regimen I've chosen will take anywhere between 4-6 months, depending on dose density and my individual tolerance. The other regimen would have taken only 3-4 months. In the scheme of life that's not a huge difference in time but in the midst of suffering...well, you get the idea. This was a tough choice.

I swing back and forth between calm, purpose driven multi-tasking and literally laying in bed with the covers pulled up over my head and hiding from even the simplest of requirements. I find my mind tracing mental pathways back to other times I have endured...from the emotionally devastating to the physically dangerous. While former evidence of my apparent ability to overcome adversity gives me comfort, it also terrifies me. Is there a limit? Where is the line between what strengthens or diminishes us?

What will this all look like on the other side, will I even recognize myself? Having come thru some major traumas before I know that I might not. I also know that change wrought by ordeal is a double edged sword that can transform our lives for the better or for the worse. It takes sheer strength of perspective to determine which it will be.

That is what I wish for, what I need now: an unending source of industrial strength perspective.

What would you do?

2009-11-16T09:34:00.000-08:00

As if I haven't already had to make enough agonizing decisions of late, now I can't decide what to do about the house we are considering purchasing. Once again I find myself in a quandry. I'll say this, tho, it has definitely taken my mind off my impending chemo, lol!

Here's the deal: Love, love, love the house. Did I mention that I love it? It is almost perfect. While it is at the tippy top of our price range it is quite doable. Thankfully the house doesn't need any work to move in. Even my furniture will all fit just right. All I will need to purchase is a new computer desk for me to write at, with an incredible view to gaze upon while I ponder, I might add.

So, what's the problem, you may be asking?

The house is on a VERY busy street. It's a county road, just two lanes...but the speed limit is 50mph. It's also in the middle of a straight run of secluded woods, meaning some folks tend to go faster than recommended. The house itself is only shy of 25 feet from the road's edge. That feels pretty close.

Of course first and foremost I'm worried about the kids. I also know that between the fact that we are the epitome of over protective parents and that children do grow up and learn not to run out into busy roads, Daniel & Megan would no doubt always be safe. But there is that idea of a slim chance, that awful reality that if they somehow pulled away or got careless at just the wrong moment and went a couple dozen feet away from our front door they could be....well, I don't even want to say it.

And talk about life imitating art! In my novel, for those that don't know, the family lost a son about the age of my own because he was sadly struck by a car when he managed to get out of the house unbeknownst to the parents. Now, these parents were wrapped up in their own issues and were careless...I'd like to think that would never happen to us. I'd have child safety locks on my child safety locks I'm that nuts about keeping my kids protected. But still, it gave me an uneasy feeling to think that here I am writing about a child being tragically killed by a car and I decide to put my own children more in harms way than they are now.

Now, let me say there is a sturdy little picket fence across most of the front of the property which we could continue to essentially completely block access. Also, with the addition of a simple gravel driveway the door which the family could come & go from, seen here between the well and the tree, is much further from the street than the official front door...like probably at least 50 feet...and that area of the yard is blocked by not one but two fences (thanks to it being behind the garden). And further -- most of the entire 2.5 acres of land is behind the house and fences...like practically 2 acres of it. There's plenty of room to play and explore (with supervision) far, far away from any danger. You can see the back yard is quite expansive in this picture.

I should also add that Michael is very artistic and handy...he has wonderful carpentry skills and is a folk-artist in his own right. This property being on a main drag would open up the opportunity of him selling some of his work, we could even spruce up the little old barn and open it as a sort of impromptu rustic shop/gallery now and then. In fact, we once considered buying commercial property to have a little shop so this is not a new idea. What with the garden and perrenials and herbs, we could also do up a little farm stand right there by the road side -- there's even a small parking lot already there.

In terms of noise, when things are quiet inside (rare in a house w/kids, lol) you do hear the cars go by, but not as loudly as you might think. I believe that this old house has rather thick walls because the sounds from outdoors are kind of muffled. The nice thing too is that the main living room is at the back of the house so it the most quiet. Even with a screen door open I was surprised at how buffered the noise was -- but it can always be heard, no denying it. Where I live now is pretty quiet. It's also not a busy street...because of a blind curve I don't let my kids play or walk by themselves, but hours can go by without a car. I'm a bit sensitive to noises so this is all a concern.

I am back and forth about this. We bought our small home 15 years ago and intended it to be either a starter house or something we expanded. Yet in all these years we have looked at many houses, never finding one we wanted to make an offer on, good houses here are hard to come by. The house in question is move in ready, larger than my home now. It clearly oozes charm. But my present house is kinda cute too and could be easily expanded, maybe even for less money...and while we have a smaller amount of land (1/2 acre) we also back up to protected woods, just like the other house.

What would you do? How do you feel about busy streets? Would that preclude you from buying what otherwise could be your dream home?

Should I stay or should I go?

I'm in love

2009-11-09T12:43:00.000-08:00

I don't know about you, but I have a mental list of homes that I have always loved. Some are no doubt out of our league financially speaking, but several could be within reach if they should ever come up for sale. I've lived here in this town for 15 years and only once has one of these dozen or so houses been on the market. Unfortunately it was a smidge over the top of our range and had a bidding war already going on. We also were surprised at just how small it was on the inside. It lacked a few necessities we have in our present home. So we let it go.

Right before I was diagnosed another of my favorite houses came up for sale. We called and it was out of our budget. It turns out that it has almost three acres of land and is larger than it looks from the road. The home is an historic 1880's colonial complete with cottage gardens and authentic well out front. I always thought it looked like the kind of house a writer would live in...romantic that I am. Not that a writer couldn't also live in an industrial loft...or a rustic cabin...or some other such place. I know a novel can be written anywhere...but ambience doesn't hurt either -- I'm easily inspired by my surroundings.

Anyway, Sunday Michael and I were out & about and drove past the place...it is surprisingly still on the market and they were having an open house. I say surprisingly because even in this economy I thought it would already have been sold. Turns out not only is it still up for sale, but they have dropped the price considerably...as in we could theoretically afford it now.

Yes, I am crazy. Yes, I know this is not the time to even think about this for soooo many reasons they are beyond counting. This is absolutely not practical on several levels. But I am still going to think about it. I may even do it!

A person with cancer wouldn't do this. And that is precisely why I want to do it. I can't explain it any better than that.

We went inside and fell in love. Wide plank oak floors, a sun room, a view of the gorgeous back yard, a small dilapidated barn...

Okay, it is on a very busy county road and the front of the house is quite close to the street...you hear the sound of cars whooshing by while you are in the kitchen. But the kitchen has the cutest window over the sink and more cabinets than I have now.

Yes, it's old and not as easy maintenance as our home now...but it has been very well cared for...there's also a rolling hill in the back yard that the kids could sled down come winter. It's surrounded by protected woods. It has a fenced in garden just screaming for herbs and vegetables. And I just know that in one of those upstairs rooms I could finish my novel.

Speaking of which -- tho I haven't posted some of the excerpts, there are several that prominently feature the homes that my characters live in. Homes are like characters in and of themselves. This house is a place I could see myself in. Don't get me wrong, I like my present house well enough, but I have never loved it. Yet I always thought I would live in a home that I was crazy about...that I truly adored.

I would totally love this house. I already do.

So, we'll see...if it doesn't happen I will chalk it up as not meant to be. But here are some pix in the meantime:

Like mother, like daughter

2009-11-05T04:29:00.000-08:00

My mother and I are vastly different. We often don’t see things the same way and have opposite approaches to most everything in life, from motherhood to style. Still, I will say that when it comes to fashion I do take a few cues from Mom -- in my own way. I also have been known to ask her advice on what to wear to particular occasions when I find myself in doubt. So when I was wondering recently what one typically wears to chemo infusions she was the first person I asked. I specifically wanted to know what she wore to her treatments two years ago.

Mind you, my mother was the original fashionista in her day…so I planned to take what she said with a grain of salt. Mom puts make-up on to go to the mailbox…she wouldn’t dream of ever appearing out of the house in sweats and is a woman who was once known to go months without ever wearing the same garment, let alone the same outfit. Rain or shine, sickness or health, old or young my mother has always been put together appearance-wise. During her cancer treatment I never once saw her without full make-up and styled wig -- plus dressed cute…even if it was just for a visit with her grandchildren.

But I never went to infusions with her. Back then Daniel was a baby and her chemo day was a day Michael worked. So her answer to my inquiry about chemo clothes surprised me: She wore the exact same thing for each and every single treatment. Right down to her shoes. When I asked if it was because others were uber casually dressed she surprised me again and said no. Mom noticed what everyone else wore, of course. She said sometimes women came from work and were dressed rather nicely…and yes, some women came in the equivalent of sweats & t-shirts…but still others came in some version of jeans and a blouse. She never noticed anyone wearing the same thing twice, and apparently she usually saw the same people treatment after treatment. However for some reason my mother chose to practically wear a uniform for the only time in her entire life. It hangs now in her basement. She’ll never wear any piece of it again and says she’d like to burn it…but it’s still there, collecting dust hanging from a pipe in the ceiling. It was as if she didn't want cancer to touch any of her real clothes...a way of holding the awful reality at bay, perhaps. Clothing as a defense mechanism, if you will.

As I have been getting ready for my own treatment I once again cleaned out my closet…just like I did at the beginning of summer before my impending mastectomy and reconstruction surgery. At first I figured that once again I would only need comfortable, practical clothes – lamenting the fact that many of my winter things won’t get much use this year. Since I will be avoiding crowds and other unnecessary exposure to germs at the height of cold & flu season, I won’t be venturing out to do my holiday shopping or go to large festive gatherings.

But I decided not to take my cues from my mother’s wardrobe choices this time after all. Instead I am planning chemo outfits that yes, are comfy, but are also pieces that make me feel good about the way I look. My favorite cardigan, the soft new black sweater I bought, my most sparkly pins and the best fitting jeans I own…these are the things I will try to wear to chemo. And if I am able, I will snap a picture before leaving for each treatment since it is likely to be some of the only outings I will go on.

Because even though that’s not how my mom did it, I learned the value of putting my best foot forward from her…learned that appearances matter. Of course I know they matter not so much in terms of the impression you make on others…but more importantly, because of the way it effects how you feel about yourself on the inside.

Thus, I’ll wear some cute clothes for chemo and try to look at least a little nice. Guess I am my mother’s daughter after all – but totally in my own way, of course.

Hold that menopause

2009-11-03T09:32:00.000-08:00

I mentioned in a previous post one of the oncologists I saw suggested starting ovarian ablation & estrogen blocking drugs now, rather than after chemo, since my chemotherapy has been soooooo delayed by this darn wound.

Well, scratch that.

For one thing, it would really only cease one, maybe two menstrual cycles at this point -- not really worth it. Additionally, chemo will effectively put me into rapid menopause anyway, often known as "chemopause" by those who've experienced it.

So the other oncologist (a woman) thought, why torture me more now for such a small benefit? Had anyone known the skin necrosis would delay things this long, yeah, sure, it might have been a great idea. But since no one did predict this holdup, that shipped has pretty much sailed.

So we're hitting the pause button, however briefly, on menopause.

It's kind of weird knowing that right now as I type this I am PMSing for probably the last time. The last of my eggs has been released, the last time I'll bleed is approaching. While I wouldn't say I loved getting my period I did love what it represented...the cycle of life, the particular gifts of being a woman. Even if one never conceives children it is always there, a symbol of potentiality, of promise. Menstruation is a connection to Mother Earth, to the lunar cycles, to the wild side of our own natures. Monthly bleeding connects all women...as does the natural cessation of that bleeding.

But there is nothing natural about what will happen to me now, and that makes me sad. I wasn't looking forward to menopause...admittedly, since I knew HRT was out of the question due to my blood clotting issues I was even a little fearful of "the change" -- I watched my mother pretty much go deeply insane for a while at the onset of her menopause. Still, I had hoped that maybe I would be spared that...maybe somehow with some herbal supplements and such I would manage to muddle thru it with some modicum of grace.

But that was supposed to be about 10 years from now. It was supposed to be a gradual process. I was supposed to even have the option of giving birth to another child, perhaps -- or at least the illusion of that option.

I will miss getting my period...both biologically and psychologically. I will also miss it spiritually, strange as that may sound. I will miss knowing every month that my body was making a fresh start, a cyclical reminder to me that all things are possible.

101 Dalmatians or I'm seeing spots before my eyes!

2009-10-27T12:48:00.000-07:00

How about a post that doesn’t mention the “C” word, not even once?

And further still…how about a blog entry that just talks about simple mom stuff for a change…you know, the ordinary happenings of domestic bliss? These little seemingly mundane moments actually always end up being amongst the most delightful memories I have, so I thought I’d share this little slice of life.

Halloween happenings…

Megan will be a Dalmatian for Halloween (thus the post title). Megan is utterly crazy for Dalmatians…yet she really doesn’t care for the Disney movie. I think perhaps the villainous Cruella de Vil is a bit too much for her.

Daniel wanted to be a firefighter so this worked out kinda cute…but as any good mom knows there’s every possibility that Danny will want to be a Dalmatian too, and at the last minute of course. So Mama is making two doggie costumes just in case :) This involves white sweatpants and hooded sweatshirts and painting lots & lots of little black spots and dots all over them. I bought some cat ears & tails and will adapt them so as to look less feline. Voila – Dalmatians!

Michael and I usually dress up a bit to go with the kids trick or treating…much to Mike’s chagrin for he’s not a center-of-attention-kinda-guy ;) This year we are going as firefighters ourselves…we bought plastic fire hats and are putting yellow masking tape stripes on jackets we already had. That and some boots and well, there ya go – instant fire fighters.

Food fight…NOT

Some may wonder what vegans like us do about Halloween. It’s really not that difficult. Lots of candy is surprisingly vegan…stuff like most lollypops, Twizzlers, Good ‘n’ Plenty, some dark chocolate, taffy, pretzels, Oreo cookies, etc. That stuff Meggie keeps. The other stuff we trade her for treats we’ve already bought. She’s quite happy to do it – we’ve told her she is old enough at 8yo to make her own decisions about occasions like this and she still wants the vegan option. If she ever changes her mind, that’s okay too.

Daniel won’t be eating candy. Daniel doesn’t eat hardly anything. He will eat yogurt (soy) oatmeal, carrots, applesauce and prunes – all of it still the babyfood version. He won’t chew anything. Really, give the kid a cookie even and he’ll lick it or sniff it but he won’t bite it, lol. As strange (and frustrating) as that sounds I’m not really too worried. Perhaps not ironically Megan was the EXACT same way. But by the time she hit 3 ½ or 4 she began expanding her repertoire in leaps and bounds. This too shall pass for our Daniel. Patience...I’ve never heard of a kid going off to college who still eats babyfood prunes, lol.

Okay, that’s enough of a painting break for Mama – I’ve got lots & lots more spots & dots to address. Hope this little slice of life was at least somewhat entertaining. It sure was a nice break from “you know what” for me too ;)

To all those that celebrate I hope you have a howling good Halloween!!!!

A worthless cure

2009-10-21T17:35:00.000-07:00

Before my breast cancer diagnosis, if I were reading this blog…a simple little style blog by some SAHM… and I saw this saga begin to unfold I’d be thinking, “Holy shit, that poor woman!” and I might also be quietly wondering if something like this could happen to me...subconsciously hoping to find some difference, something unique about this unfortunate woman with breast cancer that separated us and meant I was not in danger.

But there is nothing particularly different about me.

And if you are a woman reading this you are in danger.

One in eight women will get breast cancer sometime in their lives. That’s the worst math ever, if you ask me. It shouldn’t be ignored. It should make each and every one of us incredulous, angry and proactive. But it usually doesn’t. I totally understand that. I wasn’t proactive or incredulous or angry either.

But I am now. And I don’t want to be alone.

Yes there is better awareness today, earlier detection methods… new drugs, new tests, new treatments. Breast cancer is fast becoming considered almost a manageable disease by some standards, tho not by mine, not by a long shot. Instead I find myself wondering more and more…what about prevention? I mean, if I were you reading this blog that is what I would want to know more about. Is there anything I can do to try and prevent getting this awful disease in the first place?

Turns out there are things you can do. Granted, they are not a guarantee, but doing nothing clearly shouldn’t be an option either. I’m learning as much as I can about prevention because the same things that prevent breast cancer from occurring in the first place will also help keep it at bay once you’ve had it…because I want to prevent my children from ever having to face what I am facing now.

So, to do my little tiny part during "Breast Cancer Awareness Month" I’ll be blogging about what I feel are preventative measures we all MUST be aware of to protect ourselves, our friends, our mothers, our sisters and most importantly – our collective daughters, from this hideous disease. Whatever you think your personal risk level is…remember, over all it is 1 out of every 8 -- a pretty crappy statistic.

Let’s start with this: Know your family history.

Now, let me emphasize that more cases of breast cancer occur in women with ABSOLUTELY NO FAMILY HISTORY. That being said, having a familial pattern does greatly increase your risks. Oh, and don’t think if your mother and her family line are cancer free you are off the hook. Men also carry the presently known inherited genetic mutations that greatly increase the risk of breast cancer. These mutations occur in tumor suppressor genes that we all have and are commonly referred to as the BRCA 1&2 genes. The fact that mutations in these genes can be passed down from our fathers is something I didn’t know before I got cancer. Moreover, it’s not just breast cancer in your family tree that raises your risk…if there is colon, ovarian or prostate cancers amongst your relatives all can indicate the genetic link for an elevated risk of breast cancer occurrence too.

(CLICK HERE for more info if you think you may be a carrier of the BRCA genetic mutations...and for a GREAT blog read from a brave woman who does carry the mutated gene, check out Goodbye to Boobs --brilliant, witty and informative)

However, you should understand -- it’s not just about your family tree when we talk about genes.

Not to get too sciencey here (is that a word?) but ALL BREAST CANCERS ARE GENETIC– they are just not all hereditary. What’s the difference? Genetic diseases and disorders involve mutations of the DNA in cells, you know, the stuff that is sort of a blueprint for how to build more cells…something we do constantly. There are basically two kinds of cells, ones involved in reproduction…call them sex cells, and ones that aren’t, called somatic cells. The DNA in sex cells determine how you get hereditary factors, like everything from your eye color to a BRCA gene mutation for breast cancer as I mentioned before. But the other kind of cells, the somatic cells, carry DNA mutations as well…copying errors during normal cell division that cause tumor growth.

But why does that happen, what causes these cells to go astray, as it were? If we knew that definitively we’d probably actually be close to a cure. There’s likely not one single answer here…but essentially the DNA is damaged in some way not related to hereditary factors...in other words the faulty DNA is not something one is born with. It is damaged by other influences that occur throughout our lives – and there’ll be more on how that might happen in a future post.

Without a doubt there are many other genetic links to breast cancer as yet undiscovered (or under reported) -- inherited or otherwise. If you’ve read any of this blog you’ll remember that my mother was diagnosed with breast cancer just two years ago. I had the genetic testing for BRCA 1&2 gene mutations and was found to be negative, as was my mom. Do we share an undiscovered hereditary genetic link or was it communal environmental exposures…or both? So far there isn’t a clear answer…for my mother, for me -- and a lot of other women, too.

And that's where the problem lies, IMO.

Nearly all the focus seems to be on new drug treatments for women who already have breast cancer. As much as that is important to me in particular, it isn’t at the top of my priority list. I want to know how to keep my daughter…and my son for that matter, from getting this. With what I’ve learned so far I’m making a decent start…nutritionally, environmentally, etc. I intend to share that info here in other installments. But in the meantime I hope I’ve got some of you started on thinking outside the box during this month of pink ads for breast cancer awareness…hope I’ve got you thinking about awareness from another perspective. I really hope that maybe if a few more people shift focus to prevention we can stop this disease in its tracks and diminish the need for medical technology after the fact.

An ounce of prevention really is worth a whole lot more than a pound of cure. It makes the cure worthless. That’s what I want. I want the cure for breast cancer to be worthless because it’s no longer necessary.

(stay tuned as next time I’ll talk about knowing your body and understanding how fat effects your risk)

10 things I will do after cancer treatment

2009-10-18T18:34:00.000-07:00

1. Go with my family to Cape Cod to show Daniel the ocean. We were supposed to go this summer, but that got waylaid. I've been going to the Cape since I was 4 years old and it is my most favorite place on earth...the energy there is unique and I feel more myself on those windswept shores than anywhere else. We were blessed to share that magical place with Meggie and have precious memories...now I can't wait to share it with both my babies.

2. Take up belly dancing. Hey, I've got a flatter tummy now, might as well flaunt it, lol! It's something I always wanted to do but was too self conscious before. I think it's damn sexy and no doubt I'll need a little boost in that area after this is all over with (be forewarned Michael!)

3. Go back to my 1000 words each day. I miss the ritual of sitting down at the keyboard every night at the end of the day and working on my novel. That wonderful flow, the dance of rearranging words, that connection to my characters...I need to know what happens next (and I think notSupermum will positively explode if she doesn't find out what happens to Nola!)

4. Get in touch with old friends that I've been thinking about...my teenage best friend, the beloved headmaster from highschool, the woman Mike and I worked for when we first met, maybe my old band-mates...and several others who have crossed my mind since I was diagnosed. It's really the people in our lives that matter, not what we did or didn't do.

5. Catch up on correspondence, most especially thank-you notes/emails -- there have been so many acts of kindness that have touched me, both in the blogosphere and "real" life, that I feel the need to recognize the generosity of spirit from each individual that has shared with me and my family. Every kind word and deed has meant so much that it's impossible to convey my gratitude, but I'd like each person to know how they have impacted my life during one of the most challenging times I've ever experienced. It truly amazes me how important these connections have become...how much it can really contribute to my sense of well being. I have been blessed indeed.

6. Get organized once and for all...I want to let go of things, of the material objects that weigh us down. As reformed pack rats we made great strides since Meggie was born, truly it has changed our lives so much for the better to weed out and discard the possessions that we don't need. But there's lots more to be done and I feel compelled now to be even lighter in our footprint upon the earth.

7. Somehow share my experience with breast cancer in a way that helps other women. I don't know if it's volunteering, activism, writing or what, but if I can use my experience in any way to help other women...and especially to help them avoid this disease, then I will feel like some good could come out of this mess.

8. I look forward to once again waking up in the morning and sitting at the dining room table, sipping tea, gazing out at my little corner of the world thru the lace curtains while jotting down simple musings or snippets of poetry in my trusty composition notebook. I miss that gentle morning routine...a few stolen moments before the children get up and the day belongs once again to mothering and chores. Instead, for that brief bit of time, the day is mine and mine alone and it nourishes something in me that is starved of late.

9. I want to make more memorable moments for my children...they can be small things, simply being together, engaged in the present...but I want there to be more opportunities for making memories. I am under no illusions, my life could be considerably shorter than I'd planned -- but then again, that could be true for every single person reading this. I just happen to know the odds are not as favorable for me as they once were. Be that as it may, I am here now and my kids have me today, tomorrow and the next. One of the things I want to keep from this experience is the realization that life is fragile and memories are eternal...it's what we really give our children, what they carry forward with them. Our words, our actions, create permanent grooves in the life they carve for themselves.

10. Most of all I want to laugh, to have fun, to be silly with utter abandon...to be unleashed, free. I wish I spent more of my energy enjoying life like that before. I can still imagine a happy future sometimes...catch a glimpse of what that might look like. Other times, too many times lately, that vision is illusive, blurry...barely discernible in the haze of my present situation. Cancer is such an immediate and demanding focal point, so all consuming and encompassing by necessity that I can lose sight of anything remotely resembling unfettered happiness. But I want to let go of cancer as much as I can and move on. It might take work, it will no doubt take patience. I have no idea what irrevocable changes I may be left with in the wake of treatment. I have no idea how successful treatment will or won't be. But somehow I have to tap a source of joy for myself again. The nine other things on this list are my path back to that. I just have to forge ahead, step by step, day by day, little by little as best I can.

What lies beneath

2009-10-11T08:45:00.001-07:00

On the left you see me and my wound VAC ready for a Sunday outing. Looks like a purse, albeit fairly unstylish, lol.

But sans blouse & vest you can see some of what goes on with the tubing (yes, I really DID pose on my deck in just a sports bra -- crazy or brave, take your pick!) The tube comes out of the top of my bra from my right breast and then I hook it thru my belt loops to help control it since I carry the VAC on my opposite shoulder.

(You can also get a glimpse of the results from my tummy tuck.)

I can tell you that this VAC is a miracle healing apparatus, the wound looks much better than it did -- surprisingly so. I never would have thought it could heal to this extent.

I felt compelled to share this because when I describe the machine to most people it sounds scary or barbaric...a sterile sponge taped over a wound with a tube attached to a machine that constantly sucks on it is not exactly appealing to say the least. But in reality it's not so bad, as you can clearly see.

Michael and I had a lovely lunch and did some shopping...oh, and I was fully dressed during all of it, I swear ;)

A tip for dressing the post mastectomy body

2009-10-09T06:00:00.000-07:00

(Actually, if you have any issues with your bustline this entry could be of interest)

This may seem a frivolous subject at first glance – really, who cares what one wears while they are recovering from breast cancer? Clearly comfort is the word of the day immediately after surgery…soft, baggy clothes are essential, especially items with buttons, snaps or zippers to make limited arm motion easier and avoid having to put anything on over your head.

But what about after that?

Life goes on. There’s your job, errands, and typically many miscellaneous doctor visits. As I well know now, battling cancer is not a short-term process…a lot of life gets lived during the various phases of treatment and recovery. Depending on your individual situation you may need anything from an entire professional wardrobe to just something decent to run to the store or pick up the kids at school.

Speaking personally, now that my midsection swelling has gone down I can almost fit back into my jeans again – but the top half of me is a completely different story. I have to hide bandages or tubes at the moment, but even without that issue I still couldn’t wear my old bras and probably won’t be able to for some time. I always wore good supportive bras and really notice the difference without them. And because like a lot of women I was always trying to camouflage my tummy, most of my clothes also seem to accentuate my chest with empire waists or v-necks. That look TOTALLY doesn’t work right now on many levels and I’m betting it probably isn’t flattering or comfortable for most women post-mastectomy, for a while at least.

So what I’ve found that does seem to work great are various button-down style shirts and blouses…and I suspect that they would be effective for many women of all shapes and sizes in similar circumstances. First and foremost the blouse has to fit properly – no gaping or pulling at the button area; frankly that would only make matters worse. To detract from any asymmetry issues try a darker hue or an all over pattern. Shape-wise, a princess seam that tapers in slightly at the waist will flatter or create an hourglass figure and make you feel more feminine – something that is often much needed emotionally after surgery. Pockets on the chest can either work for or against you, depending on what type of reconstruction you had (if any) and what size you are. I’ve found that some flap pockets actually make my breasts look a little higher up and less droopy, others, not so much.

The length really depends...try to hit at mid hip for regular jeans or pants but you could go longer with so called skinny jeans. And if you have the waist for it, try belting -- just be advised, if you belt too high up and close to under the bust you defeat the entire purpose of trying to find another area of focus. A shirt tail type of hem, which is curved, works great for some, but if you are concerned about your hips a straighter hemline might work well. And there are lucky women who are brave enough to tuck their shirts in -- experiment and see what looks best.

If you are not too curvy, stripes can be great to elongate the body. No matter what your figure type the vertical line of the buttons down the front emphasizes the center of the torso and shifts the eye away from the breasts. Since v-necks are flattering for most women you still get that effect too, but if the shirt also has a collar that further draws the attention back up to the face rather than below the neck. For those of us wearing camisoles or sports bras these shirts are additionally nice because we can let the cami peek out from the blouse to add another dimension of color or texture with layers.

A button-down blouse or shirt is a classic so even after your body recovers any pieces you invest in will continue to get good use. They fit every style sensibility and work with practically anything, from casual jeans to more dressy or professional looks. They also come in a myriad of fabrics and sleeve lengths to work any time of the year.

In the end, feeling like you look good can matter alot more than you think at a time like this. It can contribute to your state of emotional well being thus helping to speed your recovery, especially when you feel less like a sick person and more vital and healthy. Any boost of confidence in your appearance can help restore control over at least one aspect of life. The first time after surgery that I was able to look even a little like my old self gave me a sense that there would be an end to this…a return to, if not my exact old life, then at least some semblance of a new normal.

I’m not saying that anyone should ever feel the need to hide or otherwise compensate for their figure – whether due to surgery or anything else for that matter. But I know that a lot of women feel losing their personal sense of style, or not looking like themselves when they gaze in the mirror, is yet another in the long line of cancer’s many assaults upon our lives. But with a little simple rethinking you can still just grab a blouse, throw on a pair jeans and move forward through treatment, and more importantly, beyond it.

New plan: menopause!

2009-10-05T15:36:00.000-07:00

Sooooo, here's the new plan: ovarian ablation now -- as in shutting down my ovaries ASAP.

My wound, while doing very well and visibly healing even to my untrained eye, is still taking a while to fully close. Estimates are at least another month before I can even think of starting chemo.

That's just too long.

Oncologist I saw today says why not start the hormone suppression now so at least any potential cancerous cells floating around my body are starved of estrogen (ER) & progesterone (PR) while I wait to start nuking myself with chemotherapy. For those keeping track my tumors were strongly ER/PR positive (a good thing) so depriving my body of these hormones is necessary anyway, it's just usually done after chemo.

Normally a pre-menopausal woman like me would take a drug called Tamoxifen for about 5 years. But Tamoxifen causes blood clots and with my known genetic mutations it is NOT advisable. So instead they need to essentially turn me into a post-menopausal woman so I can then take the drug typically used for that stage of life. It's an aromatase inhibitor (basically an estrogen blocker) usually the drug Arimidex.

My ovarian function will be chemically stopped via injection, usually either Lupron or Zoladex -- they are what's known as GnRH agonists...they cause the pituitary gland to cease production of certain hormones and that in turn prevents ovulation. The bottom line is no more periods, no more ovulation, no more fertility.

As someone who struggled with infertility and yet was blessed to have two kids...one of which was only three short years ago, this is all disconcerting to say the least. We are lucky to have the two beautiful healthy kids we do considering all we went thru. But I suspect if I were younger I would try and have more children. Truthfully we never completely ruled it out despite my age now. According to my perinatologist I have the womb of a 30 year old (if only I had the body to match, lol!)

But by as early as next week all the choices will be gone. Boom. The end. I mean, I could freeze eggs or create embryos...but when would I have the chance to use them? The earliest would be age 52. I know women do that and I think more power to them. However for my life that would be a bit later than I think is advisable...not to mention that the hormonal changes during pregnancy would spell trouble for my chance of cancer recurrence anyway. This is it. No more babies.

I always expected menopause could be difficult on many fronts...not the least of which is the emotional issues for me regarding loss of my hard-won fertilty. But I also figured it would happen somewhat slowly...you know, sort of sneak up on me a little before I had a chance to really let it fully sink in. The natural progression of intermittant periods and various symptoms would gradually increase until I knew I was smack dab in the midst of it. I'd have time to adjust, to get used to the idea if not the physicality of change.

But this is so sudden, so quick, so...drastic. And I have to admit I'm really scared of the side effects...there's no HRT for me, no bioidenticals. We're talking cold tofurkey (remember, vegan here). Or maybe that should be steaming tofurkey considering the hot flashes I will no doubt be experiencing shortly ;)

All weak atempts at humor aside...I really do know I have to do this. In fact this is the one thing all along I have been sure of. My surgery choices were up in the air...chemo or no...axillary dissection or not, but hormone suppression was a given based on my biopsy report from way back in April. It's probably the MOST important part of preventing my death from this disease, second only to removing the actual tumors themselves.

So brace yourselves along with me, dear readers...within the next week or two I take the menopausal plunge. Hold onto your seats and get the fans and ice chips ready!

Blue ribbons

2009-09-29T03:46:00.000-07:00

It's gotten to the point where I dread when people ask me how I am. I'm really not sure how to answer that. On one hand I am doing well, all things considered -- I'm in no significant pain, a little achey still from the surgery but not even worth speaking of. Cancer-wise nothing has changed yet...still healing from the wretched wound, still waiting to do chemo.

I'm in a holding pattern, pretty much.

Meanwhile I am extremely fatigued. Not sure if it's due to the slight anemia I have from blood loss or just the pace I've been running at...traveling for hyperbaric treatments and doctor appointments, keeping up with the kids -- I have moments where I feel bone tired...like so tired I can't move. I wish I could crawl into bed and sleep for a week.

I have to admit that some of my exhaustion might be depression oriented. I realized the other day it's now been six months since finding the lumps. Six months of living, eating, sleeping and breathing cancer. It's hard to think of anything else, and believe me I try. Distraction for any length of time is nearly an impossible feat. My own body won't let me forget, it feels foreign to me now every time I move...and then there are little things like TV commercials for bras, or PSA's for the impending breast cancer awareness month...a pink ribbon magnet on the car in front of me while I'm running errands -- heck, just making plans for the week and trying to keep schedules straight comes back to something having to do with my breast cancer. There's pretty much no escape.

Even little Daniel turning three soon has its reminders. I think about my pregnancy and his birth every time I go for hyperbaric treatments because they are at the hospital where he was born.

The team of doctors we used for my pregnancy were across the street and each time we would go for a prenatal visit I would look at the hospital and happily think, that's where I'll finally get to meet him, my miracle baby number two, my son. The place was obviously under some sort of construction then and I wondered if it would have an effect on my stay. But it was a seperate building, a new center in fact. It was a breast cancer center.

Now I think about his birth and realize the cancer was there growing inside me while he was, like some evil parasite laying in wait to pounce on my health and try and destroy my family. As I nursed my baby son with love and hope for the future, cancer was lurking in the same breast that flowed with mother's milk.

They finished construction of the breast cancer center near the end of my pregnancy. Multiple pink ribbons were tied 'round all the trees in front of the hospital in celebration of the grand opening. I remember Meggie saying once it was too bad they weren't blue since I was having a boy.

Too bad indeed.

Of towers & tumors

2009-09-11T18:07:00.000-07:00

Yesterday was my 46th birthday. It was the first birthday since being diagnosed with cancer. I spent my day at the hospital, first seeing the plastic surgeon for a regular visit and then the oncologist's office for bloodwork. These places have become routine, part of the eb & flow of my life now. I barely gave it a second thought. But in reflection, that's kind of sad, isn't it?

I imagine that every birthday from here on in will take on new meaning. I will be celebrating not just the day I was born, but my survivorship, another notch on my belt as the years (hopefully) roll by. Now all my birthdays will have an extra reason to celebrate tacked on to them. Perhaps it sounds ungrateful of me, but I found myself thinking that I really liked my birthdays the way they were...just a day to mark the usual passage of time… still believing I had plenty of it.

I never minded getting older, I proudly tell people my age and have no hang-ups about it. But now whenever I think of my age I can't help but calculate in my head...if I survive X amount of years, how old will I be then? It feels different. So I tried to treat yesterday like it was just any other day. The plan was to do a little celebration today when I had more time and Michael was home. Mostly for the kids' sake, as to be truthful my heart wasn’t really in it.

Today started with a wound review session from my favorite visiting nurse…and then after that I had to run to hyperbaric therapy. That whole process took six hours. Six hours devoted to cancer today. Probably about the same amount as yesterday, actually.

I was feeling pretty down about it all until I sat in the waiting room at hyperbaric medicine and looked up at the TV. They were reading the names of the World Trade Center victims. Of course, I know that 9/11 follows my birthday, living in the NYC area it has especially not escaped my notice. But I guess this year I got all caught up in cancer and sort of let the memory pass without acknowledging it.

On that fateful day 8 years ago I was home alone, still very sick from my emergency c-section and all the complications. In fact it was the first time I had been alone since Megan was born about 5 weeks earlier. My mother was planning to come later in the morning so it was only supposed to be for a few hours…just a few hours between when Michael left for work in Manhattan and my mother would come.

Ironically, September 11th had been Megan’s original due date. I remember joking with the doctor and asking if we could change it to my birthday the day before. What a wonderful gift -- a baby on my birthday after so many long years of trying.

But life had other plans and instead I almost died delivering her 5 weeks prematurely. Life often has other plans.

And on that day…that horrible, tragic day 8 years ago, I awoke from an early morning nap on the sofa to the sound of the phone ringing. I looked at the TV, left on while Meggie and I dozed, and sleepily answered the phone to hear my mother’s panicked voice. She was saying something about being able to talk to Michael for a few moments right after “it” happened…that at least he was okay as of that conversation…to try not to worry. All the while I am trying to make sense out of what my mother is saying, I am also looking at news coverage of a towering inferno on the television. And then the caption underneath finally became clear…what I am looking at is the World Trade Center. But there was only one tower. One. One where there was supposed to be two…where there had always been two towers for all these years now there was only one. How could that be? I asked my mother why there was only one tower. She didn’t answer. I said it louder…finally I shouted, “Where is the other tower???” She said quietly, “It collapsed…it’s gone.”

Just then the second tower fell. I clutched Megan and felt dread run through my body. It all made sense. Somehow, inexplicably, I had lived through her birth because the Universe or God or Whatever, was going to take Michael instead. Manhattan was under attack in some bizarro world and today I would become a sickly widow with a new baby that her Daddy wouldn’t get to see grow up.

All that day I sat with the phone in my hand. All that day I watched the TV with a sick heart like every other person with a loved one in NYC…like every other person in our country…in the world. But as we all know my husband came home. As we all know so many, many did not. Too many mothers & fathers & sisters & brothers & children…people loved and adored, needed and wanted by their friends and families…too many didn’t come home.

Thankfully Michael was in no great danger that day, tho I didn’t know that until midnight, until he managed little by little all day to make his way thru the chaos of NYC and walk across the George Washington Bridge…finally able to meet my mother who drove him all the way from Fort Lee to our front porch where I hugged him so hard I think I hurt him. We spent the next few days shell shocked and realizing how fragile life is…how lucky we were.

And again today as I listened to the all too familiar names of the dead being read aloud and I saw the towns they were from…the town where I grew up, the town I married in, the towns my babies were born in, the town I now live…again today I realized that I am still lucky. Today I am here. I now have two children, both healthy and happy. My husband came home from work again. I lived another year and a day.

Today I will make that be more than enough in their honor.

First post-op photo!

2009-09-03T05:08:00.000-07:00

Thought it was time to show my face...and the rest of me too ;)

It's been around 40 days since my surgery. Other than my necrotic wound issue I am feeling quite good physically...I can move around fairly well now. My abdominal area is no longer what I'd describe as painful, simply a sort of stretched, bloated ache at worst. Trust me, I'm a total wimp when it comes to pain so I'm not being blase' about it in the least. The new breast is pretty much comfortably numb, tho there's surface feeling here and there. Thankfully it doesnt hurt either, tho certain arm movements can cause a bit of tenderness where they removed my two lymph nodes.

Since my midsection is quite swollen yet I went out and bought new jeans in a larger size -- plus size 14 to be exact. Pre-surgery I was typically a regular size 12-14 but even my loosest jeans still feel too snug on my middle. The fuller cut of a plus size is better on my tummy, but they tend to droop a bit and require discreet antics to yank them back up into place, lol. Small price to pay in order to FINALLY wear real pants, tho. And I actually like the coloring & leg cut too...they are from The Avenue and are their Easy Going Boyfriend Jean. It's been a while since I shopped at The Avenue but I noticed alot more clothes I liked than the last time I was there.

The plain brown camisole is from Target as is the cardigan worn before here. The polka dots sort of detract from all the bandaging and a print camouflages the ever-so-lovely position of my "girls" sans bra. I can't wait till I can wear a bra again! So many of my tops look absolutely atrocious without one. Last year I went for a professional bra fitting and I swear a proper bra can take 10 years & 10 pounds off any woman -- and I can totally tell the difference without my favorite Wacoals keeping things in their proper place.

Oh, and the necklace is from The Avenue too (couldn't resist as I was checking out).

Gee, wow, how normal is THIS??? Another post about clothes complete with pictures even. Huh, guess it's like riding a bicycle :)

Musings on my present style

2009-09-01T04:37:00.000-07:00

So, let's talk clothes & stuff...remember when I used to do that?

Fashion, I have always maintained, should evolve with a person's journey -- simply put: it should fit the lifestyle and flatter the figure. Frankly that's a tall order of late.

My lifestyle today, beyond being home with the kids, consists mostly of going to hyperbaric therapy several days a week. Along with no jewelery I am not allowed to wear make-up, hair products, nail polish, or any lotions whatsoever in the chamber. It might sound vain, but this face has not gone beyond my own property line without at least some version of tinted moisturizer & mascara on it since I was about 14. Not to mention my hair needs. But I dutifully follow orders lest I catch on fire or something.

I will say, it saves a great deal of time getting ready.

Since I'm still convalescing the only other place I go is to see doctors -- ah yes, more of those. I have a standing appointment with my plastic surgeon and am scouting out oncologists, but of course. While most of my socializing is now done in paper gowns, I do try to look presentable coming and going.

As far as flattering my figure goes, that's an even greater challenge. For one thing, my body is still unfamiliar to me. My entire midsection, while partially reduced, contnues to be very swollen and I have an incision from hip to hip. In fact I'm quite puffy all over still. So I am pretty much limited to sweat pants of some sort. I managed to find some yoga pants that are cut loose & sort of flattering.

My other issue is I can't wear a bra -- not even a sports bra. While my new boob is pretty ravaged wound-wise it nearly matches the original in size & sag, which is to say I really NEED to wear a bra in public. I am also quite lopsided, tho not anatomically speaking, thankfully. It is due to the amount of bandaging and antibiotic cream I have to wear on the reconstructed breast to protect the wound as it heals. It's a sight to behold, let me tell you -- like making half a bra every dressing change, the entire breast is slathered in Silvadene and meticulously swathed in sterile gauze. This makes it look alot plumper than it really is. I also need a bit of help keeping the bandage in place beyond just the tape...something soft and form fitting yet not constricted in the least.

Camisoles to the rescue! I live in them....something I wouldn't have done before the tummy tuck portion of the surgery I have to admit. When I realized how essential they were going to be I bought a ton from...yes, where else, Target ;) Dark colors work best as I have, shall we say, seepage issues (TMI, I know). For going out I have been wearing either printed blouses or dark colored but lightweight cardigans over my new assortment of camis. The dark shades & prints hide my asymmetry & sag while additionally camouflaging pesky seepage probs (sorry TMI again).

What about shoes and a bag, you may be wondering? Well, flats are the order of the day as I'm still a bit off center due to not being able to fully stand up straight yet...almost there but not quite. Since I'm not allowed to lift anything more than 5 lbs yet a small handbag with only the essentials is my best accessory.

Okay, okay, I know....after what I've been thru who cares what I wear. And I suppose I look pretty decent, all things considered. Style is clearly not the most pressing issue in my life right now. Still, I want to look like my old self...if not naked, then at least in clothes. I want to feel normal again. I long for the day I can just put together an outfit and go without thinking about swelling or wounds. Without thinking about cancer.

Truly small potatoes, of course, but I am reminded of yet another thing, great and small, that cancer has touched. Cancer changes parts of your life that you don't foresee when you are diagnosed. You expect certain things....really BIG things, like major surgery, chemo...marring the body, loss of hair...weight changes -- oh, but did you know that more women gain weight during chemo for breast cancer? Okay, really? Seriously? I mean, how unfair is that???

But I digress as I kvetch.

While I deal with the big things the small things leave an impact too. Looking in the mirror now a month or so out from surgery I still barely recognize myself. I am slightly stooped, wearing baggy clothes fit more for an invalid than a woman in the prime of life. I can catch a glimpse of what I thought was my distant future coming at me a little quicker than I'd imagined, albeit (hopefully) mostly temporary. On the other hand, I look better without make-up on than I thought...maybe even a bit younger, so I suppose that's the proverbial silver lining.

In light of the physical changes guaranteed to be on the horizon due to chemo and forced menopause this is all a mere drop in the bucket. And I'm sure I'll adjust, heck, I'll probably be doing a post before you know it about how to style a wig or wear a headscarf while having a hot flash, lol! But with this wound issue, aside from the disturbing cosmetic ramifications, my recovery has been much delayed and waylaid. It's getting to me a little that I'm a bit behind schedule, you could say.

But then again, let's not forget -- this is Fashionably Later...and I suppose it's better late than never :D

How 'bout some good news?

2009-08-28T13:22:00.000-07:00

I got my Oncotype score back and I am in the low risk category!

Okay, what does that mean? Well, with a low Oncotype score if I didn't have that pesky micro metastatic bit of cancer in my first sentinel lymph node then I would not have to do chemo. But of course since they did find that .7mm smidge the current wisdom is to do chemo therapy.

So, how is that good news then, you may be wondering?

Well, the Oncotype score is based on a 21 gene assessment of my actual tumor specimen to gauge the aggressiveness of my individual cancer cells. The tests indicate the likelihood of a recurrence. The score is broken down into three categories, low, intermediate and high. Any score less then 18 is low, mine was 16 -- again, if it weren't for the micro mets in my node, chemo would be out.

Now, my oncological surgeon felt that my positive node was due to something called displacement...basically when they remove the tumors from the breast during biopsy or surgery some microscopic bits of cancer can break lose and end up caught in the first sentinel lymph node. That's far different than if it migrated there by itself, if the cancer spread of its own volition.

However, usually if there's a positive lymph node then they go back and do an axillary dissection, meaning they take out all the lymph nodes. This is both to diagnose if the cancer got further up the system and potentially could have spread elsewhere and to prevent a future recurrence in the lymphatic system later. But my second sentinel lymph node was clear...and while it's technically possible for cancer cells to skip nodes along the chain, it's not as likely.

Plus I've been scanned up the wazoo throughout this whole process...from MRI, PET, CAT, and a few other initials combinations tossed in for good measure. Not one suspicious bit of anything anywhere else.

What this all says to me is that while it's unfortunate I may not know for sure how that microscopic tidbit of cancer hit my first node, it is good news that my recurrence rate would probably be low to begin with...so chemo should successfully annihilate any unlikely but potential malignant cells that could have theoretically made it out of the breast.

Sooooooo......I am fairly sure I'm going to get to forgo an axillary dissection, which my surgeon agrees with as well, tho some oncologists might disagree -- in fact, this is a hot button issue in the cancer world right now. But I feel that this is the right course of action. Losing your lymph nodes can lead to some major life-long health issues that I don't want to deal with if I don't have to.

Chemo is still necessary just in case, but it is also very likely overkill (literally) and that makes me feel better somehow. Well, sort of.

The other bit of good news is that my wound has made wonderful progress according to everyone that looks at it -- the plastic surgeon, the visiting nurse and the hyperbaric RN's & MDs. I can't really tell too much of a difference yet myself but all assure me that I am healing rapidly and whatever I'm doing I should keep it up.

So, what am I doing? Along with the hyperbaric therapy I am consuming protein, protein, and more protein -- that's what wound healing needs most. Additionally I'm eating plenty of nutrient rich vegetables and grains and practically no sugars. And just to be extra sure I get my vitamins I've added some supplements that promote skin health/growth: A, D, zinc and iron (I was found to be iron deficient from the surgery due to blood loss). I'm also taking something called QBC-plex and a homeopathic remedy called Arnica. Those last two were highly recommended by someone on the message boards at BreastCancer.org -- and after researching it myself I thought they sounded like exactly what I needed. My wonderful nurse discussed it with me today and she wholeheartedly agreed with my choice -- always a good thing to have traditional medical professionals check out anything supplemental one takes.

Well, there you have it, my good news for the weekend -- many thanks to all who gave me extra love after my last post, your lovely kindness, that good cry and this heartening Oncotype score has lifted my spirits immensely :)

Have a great weekend!!!

The tough cookie crumbles

2009-08-26T09:35:00.000-07:00

Actually, as falling apart goes this was relatively minor...but since the cookie reference was fresh (good pun!) I decided to go with it.

As mentioned in my previous post I've been doing Hyperbaric Therapy -- last week due to scheduling conflicts I only did three days, Mon/Wed/Fri. This week I was determined to go all five days, so yesterday was the first time I did two days in a row. Last week my ears had a chance to clear on the in between days and I wondered if I would be able to handle this week.

Apparently not.

My ears are extremely full, everything is muffled and the tinnitus is significant. Btw, around here we call tinnitus "brain music" to make it sound less negative -- which inspired the name of my other blog, incidentally :)

However, this is not what crumbled the cookie...maybe it took a nibble but it didn't finish me off.

This morning I was supposed to go for a MUGA scan, this is basically a radiological scan of how my heart functions. They need to make sure it is healthy before giving me certain chemo drugs, essentially because they can damage the heart. So yeah, let's make sure it's nice and healthy before we potentially wreck it.

Anyway...

They need to start an IV for the test to be administered. Since having my sentinel node biopsy I am no longer allowed to have any needles or blood pressure done in my right arm for fear of lymphedema. Problem is, I have difficult veins, so I've been told, and now there is limited access with one entire arm out of commission. They tried to do the IV three separate times. It's more than just inserting a needle, the nurse said something about having to thread it in further.

It hurt and I started to cry...and just couldn't stop.

Now, considering EVERYTHING that has happened to me, surgery, a somewhat difficult recovery, necrosis, wound issues, debridement, etc...you'd think a simple IV would be nothing. But after the third attempt I had to ask them to stop. I couldn't recover myself and had to leave, promising to reschedule between my sobs.

I canceled hyperbaric, I just can't do it three days in a row. I am now planning to spend the day catching up on simple things, resting and making a food shopping list for DH. Maybe if I'm ambitious I'll take a shower.

Then tomorrow I bake a new batch of cookies.

H. O. T.

2009-08-23T13:25:00.000-07:00

As in Hyperbaric Oxygen Therapy. I’ve had three treatments so far, 17 more to go. It’s been, shall we say, challenging. In short, let’s put it this way -- I will never become a SCUBA diver.

In HOT you are placed in an airtight glass tube and breath 100% oxygen (usually we breath about 20%) while at the same time you are under greater than normal atmospheric pressure. It can increase the oxygen levels in your body tissues which better enables new blood vessels to grow and can also help treat/prevent infections by supporting white blood cells.

The language the hyperbaric doctors and nurses use is very much like that used by divers -- they talk about taking you down to a level of thus & such feet, but of course you are not actually moving, it’s just referring to the amount of pressure.

My biggest problem has been with my ears. During your descent (again, not really moving) you are supposed to clear your ears…swallowing, yawning, pinching your nose and gently blowing, that sort of thing. Some people can do it a few times and be done with it. Not me – they have to descend me slower than usual and I have to clear my ears vigorously during my entire descent (about 20 minutes). Once I’m down to the right level I lay there watching TV and trying to hear it above the constant whooshing noise of the air. I stay like that for 90 minutes. After that they bring me up slowly again and my ears sound like Rice Krispies on steroids (normal)…but unfortunately they don’t quite fully clear. The doctor examines my ears each time, and each time they are red and have bubbles behind the eardrums. I’ve been repeatedly assured by the hyperbaric doctors and my own private ENT that my ears are in no real danger; it’s just very uncomfortable…like the congestion one might have with a wicked cold. By the time it starts to go away I am back for another session.

Another challenge is that I already have chronic tinnitus. It’s a long story I’ll tell someday but at its onset I was driven nearly insane by the constant ringing, so much so that it drove me to therapy. I managed to overcome it but this process makes it a bit of an issue again so I’m having some anxiety problems as well (as if I didn’t already!)

Not to toot my own horn, but the doctor who runs the hyperbaric program said I was one tough cookie – and since I usually don’t see myself that way I took it as a compliment.

The other challenge is that this place is quite the commute, 45min to get there and about an hour to come home since I hit rush hour traffic. When you add it all up it takes at least 3.5 hours out of my day. I now have a part time job – healing this wound has taken over a huge chunk of my life to say the least.

But bottom line, I am grateful to have the opportunity to do this. It will help to speed my healing which is crucial since I can’t start chemo until this wound is completely healed. The more things I can do to encourage healing, the better. And despite the hassle and challenges I think this therapy is really very interesting and could be promising for a lot of people with various medical problems, so I hope that by sharing this little smattering of info it helps someone else who may need it :)

Update: time

2009-08-13T18:41:00.001-07:00

Accomplished what I set out to do: convinced oncologist to send my specimens to Oncotype & plastic surgeon from different hospital prescribed hyperbaric therapy. The two hospitals we went to were far enough apart that it took the whole day. Spending that much time in a car in my condition is not the most comfortable thing in the world, let me tell ya.

The dual issues I am dealing with now are figuring out what kind of chemo I need and how long I can safely wait to start it. Wounds don't heal on chemo, my breast needs to heal, so the longer I can safely postpone chemo the longer we can wait and see how much more my breast skin heals before we go removing any of it that doesn't look good. Every day counts and every spec of skin does too.

Aside from the when we have the question of what, as in what type of chemo. According to this oncologist, no surprise -- I'm in the gray area. Some would treat me as node positive, some as node negative. Some would also recommend going back and removing all my lymph nodes, others would not.

So, first up -- I need to do find a breast pathologist to reassess my sentinel node biopsy to get a more accurate picture. Thing is, pathologists usually don't talk to patients directly...they do their lab bit and give reports to other doctors. Here I go again, bucking the system. See, this is why doctors don't know what to make of me, lol.

For now, I have alot of waiting to do. I wait until Thurs for my plastic surgeon to come back. I wait to find out my Oncotype score. I try to find the breast pathologist. I start hyperbaric therapy -- where I lay in a tube for 2 hours, 5 days a week waiting for the oxygen to do its thing. I wait to see how much better or worse my skin gets. Besides that, I keep researching.

This is getting to be same old, same old. I thought after the surgery things would be straightforward for a while, either chemo or no -- simple, definitive, no more vagaries, no more decisions for me to make. I thought that my days of Googling my brains out and seeing a gazillion doctors each with vastly differing opinions to wade thru would finally be over.

What the heck did I do with my time before all this cancer shit???

Something is wrong!

2009-08-11T03:58:00.001-07:00

The incision looks bad, something is wrong. Skin very dark, seeping, sunken in. Am getting the kids ready to head for the hospital ASAP. Will post an entry when I return, might be late today. Pretty freaked out.

Any and all prayers, vibes or good wishes are welcomed with open arms & heart. Wish me luck!!!!!

2 weeks post op: not all is dark...

2009-08-09T09:31:00.000-07:00

...literally & figuratively.

1 -- As to the final pathology report on my lymph nodes, there's some potential discrepancy. Seems that there can be displacement of cells at the time of the sentinel node biopsy itself that may account for the micrometastasis of cancer detected in that first node. This is of course different than if the cancer cells migrated there themselves. It is also a strong possibility in my case, strong enough infact that the surgeon doesn't want to remove any more lymph nodes, which is the usual practice if any cancer is found in the sentinel node.

In addition there are two different methods to test nodes and one is more sensitive than the other, which it is believed accounts for picking up these misleading micrometastases. Not to mention the current prognosis/treatment protocols are based on the less sensitive method.

Guess who is calling the pathology dept ASAP and hounding the pathologist with multitudes of questions?

This link explains everything for those interested or needing info.

Bottom line: According to my researach I should have my specimens retested by a breast pathologist. Yup, doctor search, here we go again. More on all that as the situation progresses.

2 -- The other HUGE piece of news is (drum roll please):

I finally looked!!!!!

The good: The shape of my breast is amazing -- even tho it's a little perkier due to swelling you can see that once the swelling goes down it will probably darn near match Lefty perfectly. And even if it didn't droop one bit more it's pretty darn close already. Michael was right, it does look exactly like me only really, really beat up. This is SO not what one thinks a mastectomy looks like. Only the colors of my skin show the signs of my ordeal. Truly, the breast shape itself looks totally normal. The visiting nurse was aghast, she didn't believe I'd had a mastectomy.

The bad: The skin is dark and it's freaking me out. It's every shade of purple and wine you can envision. The very center of my nipple is particularly dark, almost but not quite black, and a little hardened. The plastic surgeon says there are no topical ointments, no treatment -- and she can't judge or predict if it's going to get better or this is the beginning of the end either. And then even the end isn't necessarily the end -- sometimes when skin dies new skin underneath is healthy and pretty. We just have to wait....there's nothing to be done but wait and see.

In case you haven't guessed, I'm not real good with the whole wait and do nothing bit.

So, I've been on the Google prowl for everything and anything I can do to increase blood circulation and improve skin health. No lotions or potions -- I'm following doc's orders there. But food & vitamin-wise, I'm on it. From beta carotene to licopene to protein and zinc...my diet is getting stuffed w/as much nutrient dense food as I can stomach and a few carefully chosen supplements tossed in too.

I'm trying not to get discouraged while at the same time bracing myself for the worst in terms of losing some/all of my NAC. Honestly? Not sure I can handle it if the worst happens...just the thought of it is too much right now even as I write. After all this to lose it would feel so unfair I can't even go there without falling apart.

Which brings me to the third and final issue...

3 -- Putting the above aside, otherwise my emotional state actually seems to get a little less dark day by day. There are still periods of true despair, but I also can now see them punctuated with some vague sense of normal moments. Like now, as I write this...I probably feel as good as someone in my position could. Yet hours ago I was completely lost and beyond hope. "Mood swings" doesn't even begin to cover it! But at least there is some light creeping in...a thin glowing sliver through the cracks.

So, I'll end for now on that positive note, only to add a thank you to each of you reading this. I know that flicker of light is in no small part fueled by my readers, friends & family.

UPDATE: The good, the bad, & the ugly

2009-08-06T17:17:00.000-07:00

I'll start with the ugly and work backwards so as to end on a more positive note -- as much for myself as for my readers.

THE UGLY: The final pathology report came in: there was microscopic cancer found in the first of my two lymph nodes. I believe this means my cancer is now Stage II (A). This was not the news we were hoping for. I found out only a few hours ago and am pretty devastated right now. I've more research to do but this really knocked us flat.

THE BAD: I have been in a very dark place emotionally....way before the final path report today, in fact it's been creeping up on me since I came home. I cry on and off all day, can't sleep and vacillate between deep sorrow, simmering anger and this nagging feeling of vague regret. Intellectually I know I had no choice, but it feels like I took a perfectly healthy body and mutilated it. The feeling of loss is almost overwhelming. I don't know how to write about it now...I've lost a little of the will to blog and perhaps that scares me most of all. This feels like the worst post partum I could imagine, which is also disturbing to me on many levels.

THE GOOD: I got my drains out today (3 of them), which makes me feel waaaaay more human and means I can shower. My pain is slowly decreasing little by little each day. More importantly, the margins for the rest of the breast are clean -- which is especially good because they did find more cancer there after all -- mastectomy was indeed a good choice. The nipple/areola complex gets to stay (if it survives) -- that came back clean too. My children are coping well and DH has been with me every step of the way. I don't know what I'd do without them.

So, that's the state of affairs at the moment. Will keep you posted. Any good thoughts and vibes are perpetually appreciated more than words can say.

Post op post

2009-08-01T09:15:00.000-07:00

Yes, my intrepid readers, it is me, in the virtual flesh -- or what's left of it!

I wanted to put up a post to say thank you for all your support and encouragement....I've thought of so many of you this last week, you have helped me in moments you might not have imagined. Words you have said came back to me in times when I really needed them.

I am still a total wreck, but each day I see a tiny bit of progress. This has been an even rougher road than I could have possibly imagined.

Aside from the post op illness, I've been told by my mom that my plastic surgeon is an artist, by the visiting nurse that this is the best reconstruction she's ever seen, and by Michael that I look just like me, only beat up :)

I cannot seem to bring myself to look.

The next hurdle, cancer-wise, is to get the final pathology report back all clean -- no node involvement, no NAC atypia, nice clean margins. That is what I am longing for with all my heart. I think once I know that what is there will be staying I can look.

The skin issues are still on the fence, but they are not likely to be dire and seem to be perhaps about ready to turn the corner in a positive direction (fingers crossed)...so feel free to send more capillary vibes please!

Will write more when I can...much love & gratitude!!!!

This is it -- maybe..no..wait, yes, ok -- well, maybe

2009-07-25T07:09:00.000-07:00

This may be my last entry before surgery. I am going to the Big Hospital as planned Monday morning but depending on what occurs with the doctors before I hop up onto the operating table I may say no thank you.

Yeah, nothing like deciding at the VERY last possible minute, huh?

An interesting phone call last night made it all clear to me that this was okay to do. A woman from surgical admissions called to confirm my arrival time and, well, one thing led to another...she seemed like a caring soul, I was vulnerable...so I unburdened myself, explaining my dilemma between the two hospitals and the two teams of docs, the whole enchilada. I asked her how badly I would mess things up if I canceled at literally the last minute. Her answer was true gold, the kind of thing that you carry with you forever: "You will not mess anything up, this is all about you. You need to do whatever it takes to heal."

Goddesses walk amongst us.

So, if I don't put up a new blog post by Monday evening that means I decided it was a go and will have the mastectomy at Big Hospital.

If that be the case, until I am home again and well enough to resume blogging Michael will post updates in the comments section of this entry. You may not hear anything for a few days as he and my mother will have their hands full between the kids and me. But hopefully he'll be able to put at least a few words up by Tuesday sometime.

I had planned to say a few things that were important to me....so here they are:

From the start of this blog I have been gratified by the goodness of my readers. As a new, fledgling wardrobe diary of sorts I received encouragement and advice from a whole bunch of lovely women right from the beginning. As this blog broadened and I ended up starting two more, I “met” other bloggers with varied talents and interests…so many amazing people have crossed my path because of this little corner of the blogosphere.

But perhaps most deeply touching is the support I have received since the very first moment I blogged about finding the lumps in my breast. All three of my blogs became an emotional lifeline in different ways.

My poetry blog became a place to reflect the deep pain I was experiencing dealing with my cancer diagnosis, the kind of emotions it’s hard to put into traditional words. You can say things differently in poetry, paint pictures with language in a different format. Poems can pour out like tears or tumble like giggles…they can throb with pain or gasp with joy. I am blessed to have a space for my ruminations and people to read them.

Ironically I was wondering what direction the narrative arc of my novel-in-progress would take, what would be the catalyst for change with either Kate or Nola…then it became all too clear that Kate would also be diagnosed with breast cancer. Her journey and feelings about it are often vastly different than mine, surprisingly, but it has been personally cathartic to explore how something like this effects not just one person but a family that unlike mine is already in turmoil. I look forward to returning after my own surgical saga to see how it inspires Kate’s choices and find out what happens to young Nola…and even Graham, too.

Last, but by no means least, that brings me back to this blog.

I originally chose the name "Fashionably Later" because I felt that as a middle aged woman it was a bit later in life for a renewed interest in style --but I wanted to celebrate that. I’ve been a late bloomer in some other areas of my life, too. I married Michael at 30, had my kids at 38 & 43. I also felt that I had found my voice after a lot of lost years due to various life circumstances. I once regretted…in fact mourned, all that forsaken time. But I have come to realize that time is what it is…and everything that has happened or not happened contributed to me becoming the woman I am with the life I have. I kinda like me and I love my life...so I’m okay with being fashionably late…or later as the case may be.

Sharing the whole breast cancer journey here has been invaluable in so many ways. I have been supported, loved, advised, cared for and enlightened by my readers, both regulars and lurkers. The comments and emails are precious to me, even tho I’ve hardly had time to respond – I read them all. I believe in my heart that the decisions I’ve made and my very fate in this fight have been a result of having this place to come and write, of having my little audience of dear readers to listen to me. You’ve been my compassionate sounding board and cheering section…and even those of you that are quietly in the background wishing me well have contributed – I feel your presence too.

Of course some of you have become dear friends to me, always there to buoy my spirits or just extend a virtual hug. To you I offer my deepest gratitude…you’ve touched my life immeasurably.

Thank you to every single reader of all my blogs. I feel connected to you all and my family and I will carry your warmth and strength with us as I soon step into the next chapter.

Till then...see ya!

PS: gee, now that I've gone all gushy it will be really anticlimactic if I postpone the surgery, huh? I'll have to come up with another swan song and everything :) Oh well, lol...

PPS: snapped a pic before the day was over, thought I should have one up since it might be the last one for a while.

Conservation is not conservative enough

2009-07-24T07:35:00.001-07:00

Yesterday was tough, today perhaps is even tougher.

I am waiting to speak to the two different doctors from the two different hospitals -- each conversation has the potential to change the course of my life. I am also anticipating either or both of these men possibly getting annoyed at me. Not that I personally care at this point, but frankly I don't want to base my choice in any way on which doctor will put up with answering questions....I'd rather base it on skill, on expertise. Yet if one of the docs is short on patience the last thing I want to think about is them wielding a knife over my breast and me waking up with any surprises (or at least any surprises I don't already know might happen).

Yesteday we saw three different doctors from two hospitals. Two of the docs were from Big Hospital, the breast & plastic surgeons respectively. Plastic surgeon is the one I've liked from the beginning (the only woman in the whole batch)...Breast surgeon is the new one and this was 2nd visit. These are the doctors that want to change incisions...going across the surface to one side and perhaps even under the areola a bit. I'm not happy and their explanations sort of made sense but really, what do I know...how much research can one woman do?

Not to mention the doctors at Little Hospital seem to have no problem going underneath the breast, in fact, it was their own idea, not mine.

If I go with Big Hospital I'll be having the surgery Monday. MONDAY! That alone makes me want to go with the Little Hospital, which is no good reason I know. Little Hospital will be on the 7th. (Clearly I've decided to stop being vague about dates).

Anyway....the main thing I wanted to blog about was the third doctor we saw. She was very nice, competent, and from a completely different hospital then we've been to for all this cancer stuff. As I previously blogged about I wanted to look one more time at conserving some of my breast. I needed to be sure that mastectomy (regardless of where the incision gets placed!) is the best option.

It is. I'm finally convinced now. This woman was very knowledgable and since she knew we were not choosing her as a surgeon it was as if she had nothing to gain or lose by being clear, direct, and informative without trying to convince us to do what she wanted. I felt a keen trust in what she told me and she pointed out some pathology issues from my biopsy that no one else explained to me.

Mastectomy is, I believe, 99.9% the right choice for me. That's about as sure as I'll ever be.

Of course now I'd like to be sure of the how, the who, the when and the where...

Stay tuned!

Incision indecision and tissue issues

2009-07-23T17:09:00.000-07:00

A play in who the hell knows how many acts

The cast of characters:

Dr. M -- Breast Surgeon from Big Hospital
Dr. C -- Plastic Surgeon from Big Hospital
Dr. K -- Breast Surgeon from Little Hospital
Dr. P -- Plastic Surgeon from Little Hospital
Me -- Confused Cancer Chick

First Scene, Big Hospital:

Dr. M has changed his mind about the incision underneath the breast and thinks going laterally across the side on the surface will be better, claiming suddenly this is preferable to get to all the cancer -- even tho at the last visit he assured Confused Cancer Chick that the incision decision would be up to her. Dr. C thinks that the TRAM flap may somehow cause a bulge if an inframmarary incision is made and while she's not pushing it, she can see Dr. M's point and would also now prefer to do this lateral breast incision instead of going underneath.

Meanwhile at Little Hospital....

Dr. K and Dr. P are totally on board with making the incision underneath -- no questions there, much to Confused Cancer Chick's relief.

But wait...what's that? Why, it's the sound of ominous music coming from stage left.

Dr. K from Little Hospital claims that re-testing the removed breast tissue for all the hormonal receptors and cancer classifications is unnecessary. Yet how on earth will Confused Cancer Chick be assured that all three of the tumors are the same cancer profile? Not all of them were originally biopsied. Clearly this is necessary and important, right?

Scene Two: Back at Big Hospital...

Dr. M proclaims that all removed tissue must be tested, it's practically unscrupulous to suggest otherwise.

Fade to black....Confused Cancer Chick takes center stage, spot light on her...she finally speaks:

"WTF??????"

Confused Cancer Chick's head explodes. Curtain falls.

The end?

Soooooooo......one hospital I will have no scar on my breast but insufficient pathology, the other I get a scar across my boob but the necessary testing to insure proper cancer analysis. My task before noon tomorrow is BY PHONE to either convince Dr. K at little hospital to do the pathology I need or convince Dr. M at big hospital to do the incision I want. And then to believe that any of them are accurate enough to have faith in.

Depending on the answers I'm either having a mastectomy on MONDAY(!)....or the first week in August.

There's not enough Xanax or chocolate in the world.

Bravery is in the eyes of the beholder

2009-07-22T10:53:00.000-07:00

Lest anyone think I am braver than brave after my last post, I assure you I am as terrified as a woman could be. But more disturbing -- I am second guessing my choices right up to this last minute. I actually STILL have two mastectomies scheduled at two different hospitals – and one of them is next week…the other about a week after that. I’ve only met one of the doctors involved once and my second meeting with him is Thursday. I will have to decide after that.

A small part of my indecision is no doubt the sheer fact that I don’t want to do any of this at all, anywhere, anyhow. Who would?

However I also keep questioning myself on another front-- since I finally got somewhere on the nipple sparing after nearly giving up, maybe I should take a few last shots at conserving the breast in some way? Although that process is less clear in terms of simple solutions, have I tried hard enough to figure it out?

See, I could pick up the phone, call a doctor’s office and ask if they did nipple-sparing mastectomies without wasting my time with the ones that don’t. (a HUGE piece of advice for ANY woman facing this btw – even if you think you won't need one or aren’t a candidate you just never know and should have the option available from the start)

Anyway, to even attempt making a last ditch effort at breast conservation is not quite as clear-cut, sorry for the pun. There’s no one obvious surgical approach in my case, no simple question to ask with a phone call to hasten the process of elimination. It would be (and has already been) a time consuming effort of pure trial and error to find a doctor willing to consider it and then also willing to do something in a way that is acceptable to me – a combination I’ve not found or we wouldn’t be having this blog conversation AGAIN. I’d like to think that in and of itself gives me the answer…shows me that this is sadly just not a great option for me. But then I remember that if I’d given up on nipple sparing based on the same criteria I’d be having a vastly different procedure than I now have planned. And so I continue to wonder.

Right now there are two breast cancer surgeons I saw back at the beginning who would simply take almost a quarter of my breast and “rearrange” the remaining tissue as a solution. That just sounded vague and not very promising to me, which is why they were taken out of the running. They thought I was worrying needlessly, or a control freak, or not accepting reality -- take your pick.

The plastic surgery options for fixing any deformities after breast conservation are complicated, largely by the absolute need for radiation – if you conserve breast tissue you HAVE to have radiation.

(FYI, mastectomy alone is equal to conservation w/radiation in terms of survival, hands down, cold hard fact -- conservation w/rads only potentially raises your risk for local recurrence, and mastectomy doesn't elminate it, just reduces it.)

Radiation can affect cosmetic outcomes significantly or barely at all and there is often just no way to know – it’s the luck of the draw. The only thing clear is that if I were to need a mastectomy after all some time in the future the cosmetic outcome of that would very likely be compromised. Irradiated skin often doesn’t respond as well to the larger process of whole breast reconstruction.

Plus, about 40% of the time after they excise the tumors they find they don't get clean margins of cancer free tissue and have to go in again -- in the case of a wide excision like mine that could mean either major deformity or resorting back to a mastectomy anyway.

Bottom line – conservation, if possible for someone like me with multiple, albeit small tumors, has a variable outcome cosmetically. I don’t generally do well with vagaries like that, psychologically speaking…I’m guessing I’m not alone in that.

But then there is that one HUGE caveat that keeps me wondering if I gave up on it too fast, if I should try and roll the dice and see if I feel lucky – that caveat being I would likely have normal nipple function if I managed to conserve my breast. Not guaranteed…but likely. My breast could be disfigured to varying degrees, but it potentially would feel things, you know, in that special way.

Although maybe it’s an over simplification, from my perspective this has been like choosing between feeling good or looking good. Which is really more important? If I was devestated or self conscious about my breast’s appearance would it matter to me that it felt things…quite frankly would I want it touched, would I be inclined or able to enjoy it? Yet conversely, will looking sort of normal but feeling nothing always be like some sort of fake-out, a second-best facsimile that leaves me with a constant sense of disappointment or loss?

Yeah, I know, neither sounds all that hot to me either, but it's all I've got.

My husband will love me & want me no matter which way I go…it’s really about how I feel and what my reactions will be. I’m not sure I know myself well enough or can imagine the outcome clearly enough to answer these questions. And perhaps that is where the problem really stems from. After years of hiding behind obesity trying to ignore or distort my body and then finally coming to a healthier weight and state of mind by making peace with it, now I have to decide between marring it’s appearance or losing a pleasurable function. All while I face a potentially terminal illness, nonetheless!

And on that front -- you may be wondering where cancer comes into the equation and why it hasn’t more often. You may be thinking this is crazy, it’s gone on long enough – aren’t I scared the cancer is spreading its microscopic nastiness at this very minute while I write this???

No, I’m not. Breast cancer like mine (IDC, ER/PR+ HER2- no suspected lymph node involvement) is the type that 70% of all women who are diagnosed with breast cancer have, and it can take anywhere from 8 – 10 years to even become detectable…a few months more isn’t going give it time to grow enough to make any considerable difference. Not that one wants to take much more time than I have…I’m at the outer limits here, but not unsafe. So I could postpone any surgery for a week or two more for doctor hunting if need be – besides, it’s become my new hobby, haven’t you noticed?

Believe me, if you're half as sick of hearing about this as I am living it, I understand completely.

I could just say that, as one doctor told me, “Mastectomy is NEVER the wrong choice,” and take the next step as planned. I could choose to look better and be aggressive in my cancer treatment at the same time, eliminating the wild card of radiation, reducing possible local recurrence. It's very likely I will do that.

But every other minute I decide something else. In between that, frankly, I’m either crying or cleaning…sometimes both. It’s a brand new skill I’ve developed that I didn’t know I had, I can clean and cry my eyes out at the same time.

Yeah, okay, you know what? After reading this maybe I am brave…I’ll give myself that after all. I'm fucking hugely brave. Take that, cancer.

We can rebuild her, we have the technology...

2009-07-20T19:37:00.000-07:00

For those too young to know, the post title was inspired from the 1970's TV series, “The Six-Million Dollar Man” ...though perhaps it’s offspring, “The Bionic Woman” would be more apropos in my case.

This post will be about the actual procedure I’m having and go into alot of detail. So be forewarned if you are uncomfortable about surgical stuff or bored by the whole technical side of things. (There are some links at the end if you want to see some photos)

I wanted to put a comprehensive blog entry out there with all the specifics for a few reasons: in case anyone following this is curious...or unfortunately really needs the information because they have breast cancer...and also because breaking it all down scientifically helps me to both face it and deal with it. Strangely enough it calms me to convey this information.

I'll be having a unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction. Yes, it's a big impressive name when you put it all together...it's also a big impressive surgery so I’ll divide it up into the separate parts…

TOTAL SKIN SPARING MASTECTOMY -- when this term includes the word "total" it usually refers to preservation of the nipple areola complex (NAC) and the outer skin of the entire breast. They simply take out all the interior breast tissue, all the way up to the clavicle, and leave what they call an empty envelope of skin, to be re-filled immediately during the same operation in the reconstruction phase of the surgery.

In order to access all the inner breast tissue for removal they make an incision in the inframammary fold, that crease right under the breast that really doesn’t show. It should be about 4 inches long and won’t be visible unless I lift my breast up (and at my age trust me, there’s enough droop to hide the scar!) ***I ended up going with a different incision in order to ensure the surgeon had better clearance to get clean margins, cancer-wise. The incision was on my breast to the side of my areola by my arm. It also gave the surgeon access to my lymph nodes so no seperate incision was necessary for a sentinel node biopsy.

To see if nipple/areola preservation is possible they will sample the back of my NAC by removing tissue and testing it for microscopic cancer cells right then and there while I’m on the operating table. If it’s negative for cancer cells then the NAC stays put. If there is cancer present then one of two things will happen -- depending on how pervasive the cells are they may simply remove my nipple and leave the areola (it’s technically just skin and not breast tissue)...and later I can have a new nipple created. Or, if the cancer cells are too near the areola surface, then they will make what’s called a circumareolar incision cutting around the perimeter of the areola and remove the whole NAC. What will fill in the circular hole then created will be skin from my abdomen that can later become part of what’s turned into a reconstructed nipple & areola -- as closely matching the remaining one of the unaffected breast as possible.

SENTINEL NODE BIOPSY -- A sentinel node biopsy removes the first couple of lymph nodes under the arm to test them for cancer cells. If they test positive then more are removed. It is possible to need all your lymph nodes removed. To locate the sentinel nodes they inject either a blue dye or a radioactive tracer right before the surgery (depends on doctor preference). They will make a separate incision under the arm to locate the first node(s) and remove them. The results of the sentinel lymph node biopsy is part of how they determine what stage cancer you have and how likely it is that it might have spread anywhere else in your body. IMO it is one of the most important parts of this surgery, save for removing the cancerous tumors themselves. To learn more about lymph nodes check out this link.

After all is said and done in all likelihood my entire breast will be rendered permanently numb from all the nerves being cut, tho it is possible to regain some skin sensation it is not usually quite like it was before. In terms of the nipple, it will not have sexual sensation but will react to temperature changes and maybe somewhat to touch. It is quite possible that the NAC or part of it will not survive the surgery due to lack of blood supply from all the tissue removal. This is known as necrosis (tissue death).

On to where they rebuild me…

THE PEDICLE TRAM -- The initials “TRAM” stand for Transverse Rectus Abdominus Myocutaneous. Simply put – they take a portion of muscle, fat, and tissue from the abdomen, then tunnel it all the way up under the skin beneath the chest and into the empty breast envelope from underneath – all the while the main blood supply stays attached via the pedicle.

All I can say is thank goodness for a self-activated morphine drip!

Anyway, the results for my abdomen will be like that of a significant tummy-tuck. There will be two incisions that meet at the ends, one an inch or so above my navel (which will be removed and relocated) and one just above the pubic region. Both incisions will be hip to hip, sort of like a giant ellipse. All the flesh, fat and whatnot between those two incisions will be removed except for the part used to fill the breast envelope.

In regards to the belly, I once read someone likening it to the effect of pulling down a window shade. After the pedicled flap is placed into the empty breast and the excess tissue discarded, the muscles will be sutured and the remaining abdominal skin will be pulled together taut to create a single hip-to-hip incision sutured below the bikini line. In my case, thanks to my major weight-loss, the incision will probably go about halfway around the circumference of my body. Oh, and at the end they will sew my old navel back on the new abdomen.

Eventually the long pedicle that encases the blood vessel running underneath my skin from my abdomen to my new breast will atrophy and shrivel so that the healthy vessel settles into it’s new home, but for a while I may temporarily have a bulge there until it does. I could also suffer from a hernia where the abdominal muscle is removed, which can be surgically repaired if need be. I may have to undergo physical therapy to encourage the process of other ab muscles compensating for the lost section of rectus abdominal muscle.

So, that’s the whole deal, surgical speaking.

Needless to say it again, but this is fairly massive surgery. Implants would be A LOT easier. However the benefits for me and my personal lifestyle are worth it, in my opinion. A breast created out of my own tissue will age with me, droop and fall naturally, be warm to the touch and never need to be replaced. Ostensibly if all goes well this reconstruction process is a one time only procedure…a revision is sometimes needed for final “tweaking” – however that is typically either comparatively minor surgery or even an outpatient process. Either way, unlike implants, once you’re finally done, you’re done for life. This is important because avoiding a future of repeated surgeries means minimizing risks of surgical induced blood clots...a necessary consideration with my genetic mutations. So, bigger risk/ordeal now eliminates risks in the future as I age.

My understanding is it can take months to recover fully from this, but everyone is different. I will hopefully be out of the hospital in around 7 days, depending. Because I will have a team of three doctors working on me at the same time, two plastic surgeons and 1 breast cancer surgeon, the operation will hopefully only take about 4-5 hours. Traditionally this procedure would take twice that long.

Well, okay...that’s IT, everything (and probably waaaaay more) you ever wanted to know about unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction, but were afraid to ask!

Here’s a link if you’d like to see some before and after pix I found online. None of them are nipple sparing but there’s nothing gruesome whatsoever, tho there is obviously nudity: TRAM reconstruction. And here's another site with a PDF article and some more photos: http://www.belsurg.org/imgupload/RBSS/vandeweyer_mastectomy.pdf

It is my hope that this info and following my saga might help others. When I make it thru and am done maybe another woman facing this same or similar daunting process will be able to learn even a little from my story...and see that in the end it will be okay. I've been HUGELY comforted by others who have shared their own tales and in gratitude this is the least I can do...to add to the collective voices.

I should be...

2009-07-18T10:21:00.000-07:00

...writing down final questions for both doctor teams so I can choose. I actually have two mastectomies booked, one with each team. Clearly one needs to be canceled. But I can't seem to concentrate, can't seem to focus.

Or...

I should be preparing in other ways...cleaning my bedroom for one. I'll be spending ALOT of time in here and it's a wreck. It's always the messiest room in the house. We can just close the door and forget it if someone rings the doorbell, you know? My house is a renovated cottage, kitchen, living room, dining room & two bedrooms -- 1 bathroom. Other than the basement, that's it. We're not going to talk about the basement.

Or...

I should be getting stuff ready for Meggie's 8th birthday. The timing here is awkward, with one mastectomy I'll be just out of the hospital and if I choose the other I'll be going in practically the next day. Neither is good. I don't have enough stuff for her. The older she gets the harder it is to shop for her. She's not into clothes, not into dolls, loves all things animals and adores caterpillars/butterflies. We got her a new bike -- she didn't ask for it but she's outgrown her old one. I got her some cool plush thing that turns back & forth into a butterfly/caterpillar. I'll also be ordering live caterpillars that you can raise to butterflies...but we've done it before and she needs help caring for them so she'll have to wait until I'm home from the hospital and things settle down. Other than that I'm drawing a blank -- she's not sure what she wants. Poor kid, she probably just wants her Mama back.

And that brings me to what I'm doing instead of all the things I should be doing. I'm crying, I'm panicking, I'm a deer in headlights.

I was rolling around on the bed today with Daniel (his favorite thing to do lately) and it hit me -- I may not be able to do this for a long, LONG time. Maybe so long that he'll have outgrown wanting to, maybe not ever. I'm not just having major surgery. Because of HOW they do the surgery I could be forever changed in some of my abilities. They take abdominal muscle, nerves are cut, blood vessels are rerouted. I may experience permanent changes in how I'm able to do basic things. I've heard horror stories, too.

So I started to cry and haven't really stopped. Here comes the pity party, don't say I didn't warn you...

I'm only 45, young in breast cancer circles. But I'm an older mom...that's not news to me of course. But until now it was just on paper. I never felt too old to be the mother of young children. Sure, I wish I could have had them when I first started trying...back in my early thirties. But that they are here at all is miracle enough and I never looked that gift horse in the mouth. I figured losing all that weight, quitting smoking, becomming a vegan -- all of it gave me a bit of extra insurance towards making up for the few years behind I was in terms of maternity.

Guess I was wrong.

I'm terrified of being some kind of invalid...or even if not quite that extreme, of just being limited in a way I never was before. I want to be an active, healthy mother. I'm too damn young to face this...not yet. That's what I keep thinking...not yet. I wake up with those words on my lips. Not yet to cancer. Not yet to losing a body part, most of all please...not yet to leaving my children behind because I fail to beat this. Not yet damn it. Please.

Which leads me to the last "should". I know on some level I should be happier, relieved, grateful even that I have potentially early stage cancer and a chance at a better surgery than the former mastectomy I was scheduled for. I worked hard to get this better deal. And I was happy...really, okay, I was some form of happy for a day or so. But that's worn off now and I'm just plain scared and sad. Deeply.

Suddenly keeping my nipple seems inconsequential compared to everything else. It won't feel anything anyway...I may be permanently numb in my entire breast, my armpit, part of my arm, my entire abdomen. It's hard to imagine. I think I haven't been imagining any of it -- I focused on that nipple still being there...in denial, like maybe I thought somehow I'd be different and it would be in some way magically close to the same as it was. But nothing is ever going to be the same as it was before. Nothing.

I will once again have to find a new normal. I've done it before. Believe me, more than a few times. It sucks. I'm sad to say goodbye to my old normal. It was nice. I just want it to be nice again.

I should be reassured by all the times I've found that new normal again when I thought it was impossible. But I'm not. Instead I'm wondering if this time I won't be able to do it. I think that is the real fear at the bottom of it all. That this time I've been beat. Today I feel beaten. I should be stronger -- I'm a mom, my kids need me to be strong. But instead today I'm just me, alone, and I'm not anything I should be but sad.

They're coming out of the woodwork now!

2009-07-16T14:26:00.000-07:00

I went back to the NJ hospital where I'd originally scheduled my mastectomy, the one that wasn't nipple-sparing. This time I chose a different surgeon there, just got his name off the hospital website...and he absolutely thinks I'm a candidate for the skin/nipple sparing mastectomy (S/NSM) and would do essentially the same one that they are offering me in Westchester. I like him, and he trained at Sloan Kettering so he's got good oncological cred.

Suddenly there is a plethora of people willing to give me what I want, I hardly know what to do with myself!

So, if you're confused, here's how it stands now: I could have my S/NSM at either the original hospital I planned but just switch cancer surgeons, or I could go to the new hospital I spoke of in my last two posts. I like all the doctors involved, both the cancer docs and plastic surgeons at either place.

There are some differences but so far the main glaring one is between facilities. One hospital is a university medical center the other is a small (and I mean small) community hospital. The docs at the small hospital are renowned and people do travel there from around the country just to have breast reconstruction. But on the other hand being in a big university hospital, like the kind where they fly you in by helicopter if it's serious, well, that sounds good to me if something were to go horribly wrong. While I've never had a blood clot yet (knock wood) I do have two of those pesky mutant genes just waiting to potentially express themselves.

I truly can't decide...this is tough.

I'm going to make appointments to see both breast surgeons again ASAP. I'm fairly confident in all the plastic surgeons involved, so now it's time to concentrate on the cancer issues...things like sentinel node biopsy methods, clear margin measurements, DVT monitoring...all that stuff that is the important part of this ordeal.

As of right now, I could have the mastectomy in either facility w/in two weeks. TWO WEEKS! Time's moving VERY fast!

Wow, it gets even better...

2009-07-14T10:32:00.000-07:00

...and quite frankly it's about damn time!!!!!

So I actually like the plastic surgeon ALOT, and he is more than willing to make me another saggy middle-aged boob to match the one I already have. He gets me, and he's a warm, caring & thorough doctor. You can imagine that after all this time of searching I am in deep shock now, lol. It almost seems too easy and I'm waiting for the other shoe to drop (or maybe that should be the other nipple?)

Anyway, there's some other good medical stuff here too -- like he works with a partner to do my kind of reconstruction...so they all work together on me at the same time, two plastic surgeons and one breast cancer sugeon. This is super important for someone with my clotting factors because it cuts the time on the operating table in half -- instead of an 8 hour surgery they get me done in 4 hours. Yes this makes sense. No, I can't explain why even in the big city hospitals like Sloan Kettering they don't/won't do it this way.

I can't explain ALOT of things about some of the doctors I have seen!

It's scary when you think about it. I did everything "right", went to the top rated hospitals around. Sloan K., NYU, Hackensack Univ, to name just a few. These two new doctors are out of a small breast center in a Westchester County NY hospital that makes my local hospital look positively metropolitan. Yet they are doing state of the art surgeries, people travel to go there. I have to tell you, when we walked in I was honestly not impressed, I'm a bit of a medical snob, lol. In fact, I thought it was a royal waste of time by the looks of the joint. How wrong I was!

So, where did I find these two miracle docs?

For a moment I'd like to say a few words about some young women I often lovingly refer to as the "BRCA gals". These women are faced with a high genetic risk of getting breast cancer. Many of these brave young women do prophalactic mastectomies to save their lives -- as you can imagine a tough decision. But these are empowered, strong women I admire more than I can say. They also, I have found, know alot more about mastectomy & reconstruction than practically anyone else. It is from researching resources available thanks to these women that I found the two doctors I have just seen. I will always have a special place in my heart for these amazing women.

I'm going to cancel my mastectomy at the other hospital. Since I still love the original plastic surgeon I saw there I made an appointment with a different breast surgeon to see if they will match what I'm being offered in Westchester. If so, I'll have to choose. If not, I have my team in place and will schedule the new surgery in Westchester.

After 3.5 mos since first finding the lumps it strangely seems to be happening very fast now. My head is spinning a little. But I am truly more at peace with the sugical choices I have now. I'm so glad I didn't give up after all, that I listened to my gut. Even if in the end I lose my nipple it will be for all the right reasons and not just because of medical ignorance or arbitrary red tape.

What a relief!

Thank you S000000 much to all my readers for listening on & on to this endless saga, for supporting me, for encouraging me and for the oodles of comfort you have offered. This process would have gone far differently without all of you and this blog. Of that I've no doubt.

Blessings and gratitude to all!

Hope!

2009-07-13T11:02:00.000-07:00

Ok, I'll cut to the chase first and then explain after -- I found a breast cancer surgeon who will attempt a nipple and skin sparing mastectomy.

I think I'm in shock.

When you have breast cancer surgery, whether it's a simple lumpectomy or a full mastectomy, they test all kinds of stuff for microscopic cancer cells while you are literally open on the operating table...your lymph nodes, the margins of the tumor & surrounding tissue, etc. Well, in a nipple-sparing mastectomy they would just test the tissue behind the nipple in the same way. If there is any cancer there, then off the nipple goes -- it can't be saved.

So clearly this if very simple, right?

Yet I've been unable to find a doctor willing to do this ostensibly because one of my tumors is a couple centimeters away from the areola. That doesn't mean there's cancer in my nipple/areola, just that there could be. So why would you remove what might be a perfectly innocent nipple without just testing it first, why remove it if you didn't have to? Again, this seems VERY simple to me.

It's simple to this doctor today too :)

He'll biopsy the cells behind my nipple. If there's cancer, bye-bye nipple. Yeah, that'll suck, but what a huge freaking difference to mourn the devastating loss of a CANCEROUS nipple instead of one that might have been perfectly healthy!

Also, the nipple might not survive after surgery -- that happens sometimes. It would be very sad but again, at least it had a fighting chance.

After the surgery all the tissues removed or sampled are further tested more extensively...that could reveal there was cancer in the nipple after all. I'd have to go back and have it removed. That would be crappy as well, but again, I'd be saying goodbye to a CANCEROUS nipple, not a healthy one.

Finally, the nipple won't have the same sensation anymore. It will react to temperature and touch, but it probably won't do much beyond that. Sad, but better than nothing.

This doctor doesn't recommend trying to conserve my breast because he thinks it is too risky cancer-wise, so it's not like he's careless and willing to leave malignant body parts on me.

Now the trick is to find a plastic surgeon willing to resist the temptation to nip and tuck my boobs into smithereens so I can win a wet T-shirt contest, lol. I need a PS just like the beloved one at the other hospital who was willing to make me a saggy old ta-ta to match it's mate. In all seriousness, if I can't find a plastic surgeon to replicate my existing breast then that means I could end up with two non-functioning nipples after they get done messing with Lefty...kinda defeats the purpose of saving the right nipple. So while there's hope, I'm only halfway there.

But it's better than what I had just yesterday :)

UPDATE: so far, no good

2009-07-10T07:32:00.000-07:00

(This post is a quickie little update to my previous entry.)

I'm still looking into a few possibilities but so far with disappointing results, mostly in terms of just getting accurate, reliable info. If I have to let go of saving my nipple I just don't want it to be for lack of trying...simply because I'm unable to find the right doctor who offers the appropriate, up to date treatment options, you know?

In any case, just wanted to put something up to let all know I'm still here, still going, one way or the other :)

Have a great weekend everyone!

One more last ditch effort...

2009-07-06T12:03:00.001-07:00

…to save at least some of my breast. Well, sort of.

Yeah, I know, you were thinking I was all done with that. Not so much, apparently. See, here’s the thing…according to everything I’ve read there are a lot of false positives on MRIs. Yet that’s what we’re basing the final scale tip towards having a mastectomy on. It is possible that the suspicious lesions are nothing to be suspicious about at all and I just have my three original tumors. It’s possible they are all cancer, too. But I don’t like that question mark hanging over my head.

So I’m seeing the doctor one more time to discuss doing a core needle biopsy on these lesions. If they are cancerous and located far away from my other tumors then clearly I’ve made the right decision and that’s all there is to it. But if they are benign, or even if they are malignant but are close to the original three…then there’s some further discussion.

I’m not hopeful so much as determined to rid myself of as much ambiguity as possible. I might end up right back where I am, mastectomy bound. That’s fine…well, okay, not fine exactly but you know what I mean. No harm, no foul. I will be going under the knife in a couple weeks knowing there was nothing else I could do, or as close to that as is reasonably achievable. That would be a better feeling than what I have now.

Of course it’s also possible my case will never be as black & white as I’d like. I may always be left with a shade of gray and have to make my peace with it. If so I’ll learn to accept that and move on. But if I don’t have to, or if I could be a little more certain in any way, then I need to pursue it. Information is power, both in decision-making and reaching acceptance.

So, maybe don’t wish me luck; just wish me clarity…either way that would be the best possible outcome.

PHOTO: growing on me

2009-07-06T04:00:00.000-07:00

After my first photo of the new doo I decided to take the marvelous advice of some commenters and try doing my hair curly. The good news is I kinda like it, the bad news is it required even more help from a curling iron than when it was longer! Without the taming effect of a few well placed curls I looked more like a Celtic version of Roseanne Roseannadanna. (Ah, Gilda, how we miss you.)

Anyway, not quite the easy maintenance style I was shooting for post mastectomy-wise. I'm thinking hats and scarves could make an appearance after the surgery before I even lose a lock to chemo. At least in the meantime I hate it alot less -- in fact, it's actually kinda growing on me and I also like it when I wear it smooth now, too. Funny how so many things take alot of getting used to...big or small, change can be a real bitch.

Hope everyone that celebrates had a GREAT 4th!

Hang on!

2009-07-03T05:09:00.000-07:00

We’ve all probably heard various episodes of life described as being like a roller coaster ride, maybe even used the phrase ourselves at one time or another. Whether it be something positive or negative, many situations lend themselves aptly to that metaphor. You have building anticipation as the ride begins, then a sudden, rapid plunge to frightening depths only to be contrasted with the giddiness of soaring heights...there's speed, swift turns and twists, terror and elation all wrapped up into one extreme ride.

I went back and read all my blog posts since finding the lumps in my breast that have turned out to be cancer. This is clearly one of the wildest roller coaster rides I’ve ever been on. From one post to the next I am up, down and twisted inside out. I found posts where I seemed determined, brave, calm -- even humorous…and then in the very next entry I was plumbing the depths of near inconsolable despair – practically all in the same week. Understandable, of course, but nonetheless striking when you see it all laid out in front of you.

I seem to have reached a little plateau now as I wait for my surgery day. This is not to say I'm even keeled emotionally, just that I am bracing for what comes next. I can see there is a huge, sharp turn ahead and I know after that the car will plunge down faster & further than ever before. I also know that if for no other reason than the fact that what goes down must come back up, I will not crash when I hit bottom, at least not this time. Slowly, at a snails pace perhaps, the tracks will again climb the steep upward summit and who knows what will happen after that.

Hmmm, a loop-de-loop, perhaps?

Meanwhile as the anticipation builds I vacillate between moments of prepared resolve and complete panic-fueled doubt. I could second guess my second guesses right now.

I can't help but wonder, out of curiosity, what an outside observer thinks as they read my little but growing collection of posts on this subject...what over all impression they get from the big picture thus far. Even reading all the posts in order of their occurrence I find it hard to follow a common emotional thread, but then again I’m not very objective. I see things I wish I’d done differently, said differently, felt differently – not regret, just the birds eye view of hindsight.

In years ahead when I come back to this chronicle I wonder what will strike me then…what will I wince at, what will make me cry, what will perhaps even make me laugh. I wish I could fast forward right now, to skip the scary part. But I can’t. Instead I have to just hold on tight for dear life, maybe close my eyes sometimes…scream at the top of my lungs when I can't help it, and wait for the ride to end…or at least to get to the fun part again. I just have to hang on the best I can.

I hope all that celebrate it have a happy Fourth of July. Thanks for coming along on this ride with me, it's always so much nicer to have a hand to hold when things get crazy and the readers of this blog have blessed me with many, loving hands.

Fare thee well...

2009-06-30T05:50:00.000-07:00

...but not to my breast -- well, not quite just yet, anyway.

That is something I will no doubt continue to write about, here and at my other blogs, intermittently and perhaps perpetually. But today I am thinking about another body part that shall be leaving me. Today I am saying goodbye to my belly, or at least a rather large portion of it.

I will be having a tummy tuck as part of this procedure. It's not optional, not an added bonus like buy one get one free. It's a necessary part of the operation.

If there were one body part I felt suffered the most for the triple ravages of time, pregnancy and obesity, it's my tummy. In fact, ironically, I was just beginning to research the process of having a tummy tuck when I found the first breast lump. It was a procedure I needed to have done eventually, not so much for vanity's sake but for health reasons...suffice is to say that much extra skin isn't easy to deal with and we'll leave the TMI aside for the time being.

So, after a 2nd meeting with my plastic surgeon I found out that not only will all that extra skin below my navel be removed, but the upper ab area will also be flattened out as a result of suturing the remaining muscles.

Wow, I hardly know what to think!

"You do realize," I said to my husband as we left the hospital, "that this means a whole new shopping process when this is finally over?" He just shook his head and smiled.

I mean, nothing will fit me anymore. And maybe I'll be able to tuck shirts in...and I won't have to buy my jeans a size larger just to accomodate my waist -- they'll fit me better right off the rack. When I try on clothes that look good from the front I won't be continually disappointed that the profile view is, shall we say, protruding.

And perhaps the most incomprehensible factor of all...no more dreaded muffin top!

Lest you think I've forgotten why I get this little extra boon and what I have to sacrifice for it, I have not. But still, I can't believe that after all these years....almost 8 years since I lost the weight, I will have a normal looking stomach.

Amazing.

And yet...I find myself nostalgic. I earned that belly. True, that belly began to grow from my depression and discontent, from self-medicating with food a life full of pain and malnourishment. But it also expanded and welcomed my two precious babies, accommodating them safely, proudly, until they belonged not just to me but to the world.

What's left of my former girth is now a flopping, sagging badge of determination...to live, to be healthy, to lose the weight that once filled it up -- no small task, I assure you. It is deflated evidence of how far I have come.

So in closing, perhaps a moment of silence for my soon-to-be-gone belly? It was the best of times it was the worst of times. Thanks for all you've done...and perhaps most importantly, thanks for still being there, for without you I would not be able to fill the empty space left from my mastectomy. If it weren't for you, I'd have no right breast.

So gee, I guess it's not really goodbye after all...more like see ya later. In fact, you'll be closer to my heart than ever before.

Secret Agent Mama

2009-06-26T07:42:00.000-07:00

Thought I'd give you all an update on how Daniel is doing -- he is fine, in fact, he's better than fine. He is happy, affectionate and cuddly, very playful, still a demanding little guy but a joyful loving boy. There's been a few incidence of him wanting to see my ta-tas...but he hasn't asked to nurse, nor have I been solicited into nursing anymore dinosaurs.

But I will tell you a secret...I am still nursing him a little here and there, only he doesn't know it. How is that possible? I do it at night, covertly, while he sleeps.

Both my kids and I co-sleep (remember, I'm THAT crunchy granola mom) and both Meggie in her day and Daniel in his would frequently nurse in their sleep. I always obliged. In fact, Megan was a preemie and nursed every two hours for the first two years of her life. Yes, you read that correctly. Thankfully, lactating moms have happy hormones that help with sleep deprivation (well, to some extent, anyway, lol).

When I started to wean Daniel after my diagnosis it went quicker than I thought, both to my deep relief and great sorrow. For a while I was still pumping a little milk in some vague hope that I could return to nursing him at a future point in time. I know now that will be impossible. Even if I manage to escape chemo I will have to take drugs to shut down my ovaries and still more drugs to suppress any stray estrogen left...for at least five years. These medications are contraindicated in breastfeeding. I can't begin to tell you how hard this still is for me to accept...words fail.

Assuming for the moment I am lucky and don't need chemo I can wait until around October to start the ovarian ablation & Arimidex. So I could still be nursing Daniel all that time. But of course to start him up again now only to take it away later would be cruel to say the least.

And so at night, sometimes, I nurse him as he sleeps. I don't do it every night because I don't want to create any sort of pattern he might come to depend on. But a few times a week I indulge us both. I imagine that in his sweet little baby dreams he knows...I swear that on some subconscious level he feels the love I have for him pouring out in these last, precious drops of mother's milk....my secret gift. To us both.

It's real now

2009-06-24T19:10:00.000-07:00

I got my surgery date. It's at the end of July (not sure I should post the exact date online).

Anyway, it's set, the OR booked. I know what time to arrive at the hospital and what time I'll be on the table...I know who will be performing exactly what procedure.

I've had my bone scan today, the last of multiple tests. I need only to see a regular doctor for medical clearance -- really a formality.

The research is done. My decision made. Things are moving forward.

And here I sit, stunned like a deer in headlights as if I just found out today that I have breast cancer, as if I just found out I need a mastectomy.

There's a mark on the calender...it's real now.

PHOTO: Hair today, gone tomorrow :(

2009-06-23T05:33:00.000-07:00

I've been told that doing my hair after my mastectomy will be a challenge. I won't be able to shower for a long time and even when I finally can, raising my arms above my head to shampoo could be difficult. Someone will probably have to help me wash my hair over the kitchen sink.

Needless to say, I figured a haircut was in order. I was overdue for a trim anyway because I like my hair around shoulder length. So, I printed out a copy of my profile photo over there at the right and asked the hairdresser to recreate it.

This is the result and I absolutely HATE it. Silly as it sounds, if I stand a certain way it doesn't look as awful, but beyond that...

It's considerably shorter and even the shape isn't the same...more of a bob, longer in the front than the back.

At first I figured, so what? It's only hair...and I tried to get over it. But this may be my last haircut for a while...I may end up doing chemo before I know it and this will be the last style I have before it all falls out.

I wish I hadn't gone someplace new, wish I'd left it alone or gone to my regular hairdresser. I am really upset about it. I am sure people will say it looks nice and maybe it even does -- I keep trying to comfort myself with the fact that it grows back...but what I really wish was that my damn nipple would grow back. And it won't. And so I'm putting all my anguish into my stupid hair instead of that.

I guess this goes beyond a bad hair day.

Sun spots

2009-06-22T05:21:00.000-07:00

In honor of yesterday's summer solstice...

The magnetic fields of the sun are complicated and unpredictable, kind of like life. A manifestation of these variable magnetic fields are sun spots, marks that in a sense mar the sun’s fiery surface like “solar blemishes” if you will. Sunspots are actually evidence of fierce winds, as well as massive explosions called solar flares.

My VERY limited understanding is these explosions discharge some sort of magnetic energy that sends charged particles shooting into the earth’s atmosphere where they interact with the gases present there, thus causing an intensified and enhanced glow of the aurora borealis…yup, the magnificent northern lights! I’ve never seen them in real life, but photographs portray haunting, achingly beautiful light dancing in the velvet night sky – a sight to behold and one I do hope to see some day.

All this got me to thinking...in reality, the most magnificent displays of the northern lights are created from what could be perceived as some rather harsh imperfections upon the otherwise radiant face of a shining star. Yet without those very same brutal flaws a thing of incredible and unique beauty would be diminshed.

Imagine that.

Have a sunny day :)

Ten things five plastic surgeons said to me:

2009-06-20T05:57:00.000-07:00

1. You have too much breast skin; the “extra” needs to be removed.

2. You don’t have the type of body for implants.

3. Your breast envelope is too flat (ok, is that taken care of by the post office, or UPS?)

4. There are weeds in your garden, if they have popped up in one breast they will pop up everywhere else.

5. You should have a bilateral mastectomy to achieve the best symmetry.

6. Fake nipples are more convenient than real ones because they don’t project as much.

7. Implants are your only choice (um, see number two above).

8. Referring to my other breast, “Why would you want to match that one?”

9. You’ll never win any wet t-shirt contests.

10 -- Yes, I will make you a breast that matches, as closely as possible, your original one, and I understand why you want that.

BINGO! Yes, that last one is the winner :)

PHOTO: My newest accessory

2009-06-18T07:12:00.000-07:00

Several people remarked that I looked different in the recent photo I posted...meaning 'different' in a good way :)

First of all, thank you!

If I do look changed it could be due to the fact that I've lost a little bit of weight by modifying how I eat. In order to prepare myself for the battle ahead I have given my diet a major overhaul.

Food-wise, I am in warrior mode.

I've been a vegetarian for almost 8 years now, and a vegan for a little over 6. Prior to that, when I weighed as much as 300 lbs, my diet consisted of alot of junk food punctuated by frequent but failed attempts to turn over a new leaf. When Megan was born, that leaf was in a sense turned over for me, as I recently blogged about. (hey, that whole leaf metaphor works rather well since I'm a plant-eater, huh?)

Anyway, people unfamiliar with a plant based diet often think it is limiting or all about deprivation. Trust me, it's not. Gourmet food abounds that is veggie friendly. And while many of us can be rather health conscious it is still possible to pig out on plenty of junk food, too. French fries -- vegan. Oreos -- yup, vegan. You'd be surprised at all the readily available vegan foods, not to mention that places like Whole Foods have an array of temptations at the ready for even the strictest vegetarian gourmand.

Clearly I didn't lose 130 lbs and maintain it for all this time by indulging in too many Oreos or french fries, lol. Once I went veg, compared to typical Western standards, I ate a pretty healthy diet. But after Daniel was born and life got more hectic I admit to relying more and more on convenience foods instead of eating the fresh, home-cooked meals as often as we did before.

However since my breast cancer diagnosis I have been back to following a leaner, cleaner version of my usual vegan diet, and then some. Now I eat virtually no processed foods and absolutely no sugar -- no sweeteners of any kind, in fact. Sugar is inflammatory and the last thing you want if you are dealing with an illness is increased inflammation, especially when it comes to cancer.

I've also tried incorporating alot of macrobiotic principles into my new approach to food as medicine. A typical day has me easily eating at least 9 servings of fruits and veggies, (more veg than fruit, even fruit has natural sugars) and 3 or 4 large servings of whole grains...a couple servings of beans and some sea vegetables too. I still microwave some of my food (a no-no in macrobiotics) but rely more now on steaming, blanching or light sauteing. I always bought organic if available before, but I've stepped that up to eating at least 90% organic now.

The results are that I feel -- well, great, actually. If I didn't have cancer I'd swear I was the healthiest I've ever been. My energy level and ability to stay calm (relatively speaking) under dire circumstances is evidence enough that this way of eating is healing and serving me well.

And I really enjoy the foods I eat! A dinner plate half covered with a rainbow swath of a variety of veggies and a luscious mound of rice & beans is beautiful, colorful, and more hearty than you can even imagine. Real food tastes delicious, especially if you give your taste buds half the chance to recover and again relish the vitality of natural flavors.

So, maybe this is why I look different. I guess you could say quality food has become my best new accessory :)

Just do it

2009-06-15T02:54:00.000-07:00

I died once. Seriously. I took what was (almost) my last breath on the evening of August 5th, 2001. For real.

After being hospitalized for a battle with pneumonia while seven months pregnant with Megan, my blood pressure suddenly spiked. I slipped from pre-eclampsia to full tilt eclampsia and before they took Megan via emergency c-section I went into convulsions.

Finally, while in recovery with my (thankfully) healthy baby safely in the regular nursery, Michael watched as I struggled to breathe. And then there was that fateful, final breath as I coded. Right in front of him.

Needless to say, I'm still here, so there's a happy ending. But it was a long time coming. My breathing remained compromised and my blood pressure stayed high even on medication for months. Two weeks after that event I developed the addition of excruciating gallstones and was at constant risk for pancreatitus. But no surgeon wanted to touch me to remove my gallbladder -- all were afraid I wouldn't live thru even a laproscopic procedure. No one thought I would be able to care for my child. I did tho, thru sheer will, determination and pure love.

The saga of how I went from that dying woman to relative health (if you don't count breast cancer) is a long one, destined for another time. What I am writing about today is what if feels like to die. It's an uncomfortable thought for many, but I want to share my experience.

My eyes were closed and I was unable to open them, tho I didn't try very hard. Still, I remember taking that last breath. I remember it very clearly. I had no awareness that the surgery was over. For all I knew I was still under the anesthesia or just waking up, it made no difference to me. After every thing I had been thru to conceive this precious child (a saga in and of itself) in my unconscious state I couldn't think of her at all.

Instead I was completely absorbed with the process of breathing. It was the most difficult task I had ever experienced. Each breath was a struggle, and it had been for weeks. But now it was harder than ever before. I was trying with all my might to remain calm, not to panic. Like someone trying to tread water I knew that if I panicked I would drown, I would not be able to maintain my breathing. And as suddenly as that realization hit me, an inner voice said, "Just let go. You can stop now. You don't have to do this anymore, it's okay."

And so I stopped. I just simply stopped struggling, stopped breathing. A feeling of peace came over me, a sense of calm and relief the likes of which I have never known. I was almost thrilled that it was that easy. So much fighting and struggling and all I had to do was let go.

I don't remember having a choice about living or dying, just the feeling of falling and the sound of someone screaming at me, "come back, come back, come back!" After that, my next memory is waking up later in the ICU and trying to find out about my baby. It was a long, painful night until the next day when I could finally hold my precious little girl. That memory too is powerful, in fact, more powerful than life or death. It was only the horror that I could have left her behind that made me glad to be back in my suffering body again, more than glad, I was elated...and grateful.

I carried away many insights from that trauma, some still reveal themselves to me now, nearly 8 years later. I consider my daughter's birthday my re-birthday because it was the beginning of a journey to health and a new life. You don't realize how precious something is, sometimes, until you almost lose it.

In a literal sense I found out death itself is nothing to fear. True, the time leading up to it may be more horrendous than anyone can imagine if you suffer from prolonged illlness, but the end part is simple, peaceful and soothing. I find that to be a great comfort. Especially now as I face an illness that could be what I eventually die from, tho I am as determined to avoid that fate now as I was to live once I came back from the dead on that August day.

I also can't help but think in metaphorical terms and find a life lesson in the symbolism. I had struggled alot in my life, I had railed against inevitabilities and prior traumas, held on tightly to my many wounds. It had left me battle scarred and more weary than I can describe. I needed to just let go, but somehow I couldn't. Over the first years of Megan's life as I dealt with recovery and motherhood I realized letting go is easier than we think. It really comes down to an infamous cliche of three little words: Just do it. Nothing is so important that it can't be let go if need be.

Oh, except life itself. That's worth the struggle at all costs to the bitter end. But when that end naturally comes, letting go of even that can be simple, gentle and freeing.

I will not go gentle into that good night, but when the night is over, many, many healthy years from now, there is peace waiting for me...for us all.

Trust me, I've been there, done that.

13 things I've learned

2009-06-13T06:10:00.000-07:00

Alot of things in my life are less complicated than I made them.

I am very blessed to be smart.

Any doctor threatened by my intelligence is one I should stay away from.

Having anxiety doesn’t make me less capable.

Having anxiety doesn’t make me less brave.

I can cry and think at the same time.

I am way stronger than I ever thought.

My love for the kids is a source of strength for my own self.

Sometimes I have to put my needs first.

More people are loving and kind than not.

When people unite in compassion it eliminates differences that don’t matter.

Rarely is anything insurmountable, often you just have to find another way around.

Time is a precious gift -- I will never see it the same way again.

Finally -- a photo!

2009-06-10T08:24:00.000-07:00

While I'm still coming to terms with what's about to happen and all the ramifications, life goes on...so, it's about time for a picture, don't you think?

Granted, this is not the most auspicious shot to restart with, it's a bit in the shadows and I look strangely green, lol. But Michael and I are out of practice since the last one and the light has changed now that summer is approaching.

After my diagnosis at first it was simply hard to have even a remotely pleasant expression on my face, so posting pix seemed, well, odd. Then after a while I was deeply absorbed in research and only dressed to go to the doctors -- which didn't induce a feeling of wanting to take a snap shot either.

But always in the back of my mind I knew that returning to at least a picture here and there was somehow important. I can't quite define why...perhaps it could give me a feeling of normalcy? Maybe it would add a visual record to the written one of my journey...and in years to come my kids would see how their mom went thru this awful thing but came out on the other side. That could be a life lesson for them to hold on to, surely.

And further, in my own more broad-reaching motherly/sisterly way, I'm hoping that any other woman who has to experience this could take some comfort in seeing that no matter what I end up looking like for a while, there will be eventually a return to the simple act of choosing clothes and trying to project my own best image as an empowering & creative expression of personal style.

So I've decided not just to document this journey with my words, but to try and illustrate it now too by including pre and post op pix, even photos of me going thru chemo (if necessary), the whole kit and caboodle. Mind you, I won't post a pic every day...but my goal is to put up a few with some semblance of regularity.

Most importantly, for those that need or want it, when it's all over & done with, I will even provide before, during & after photos of my breasts. I know that looking at reconstruction photos has been very important in my own process so if I can add to that for another woman I am glad to do it. Oh, and for my regular readers, now my dear beloved friends, if ya just wanna see what they look like I'll be happy to show you too ;) I know I'd be curious. (there'll be a password or email type deal so I'm not plastering my boobs up indiscriminately, fyi!)

Obviously this blog has morphed a little, changed a bit -- and certainly so have/will I. But the core principle remains fundamentally the same. This is my journey...thanks to all who join me for a any stretch of the road. It's a comfort to have such great company.

See ya...

What price life?

2009-06-08T07:49:00.000-07:00

Deciding something and actually doing it are two very different things.

I have been completely consumed with making this decision for more than a month. I've blogged about it ad nauseam. I know intellectually mastectomy is most likely the wisest choice for me with my particular set of medical circumstances.

And yet...I am still having trouble letting my breast go.

I wrote in my previous post, "I am as at peace with my decision as one could be under the circumstances." Truthfully, I had hoped to be more resigned once I chose. But whenever I try and picture myself going to the hospital on the day of my surgery, everything in me is screaming, "NOOOOOOO!!!" A big part of me just can't imagine going through with this. I keep searching my mind in vain for another option. Words echo in my head like, "there has to be another way"...There are many moments I simply cannot wrap my brain around any of this.

I do think the breast mound, as they call it, will probably end up looking pretty good eventually. Although the surgery in my case will be particularly brutal (we're talking about 8 hours) and recovery will be long and arduous, I know pain passes and I will heal. Cancer-wise there is alot to deal with yet, still a bunch of unknown factors to be revealed. But these are bridges to be crossed when I get there. So, what's causing me the panic, the dread, the ultimate terrifying fear?

Of course I'm sure it comes as no surprise to anyone who reads this blog that what is causing me the most anguish about the whole thing is losing my nipple. I mean, really -- it's all about that damn nipple with me and has been from the start.

So, in order to get my feelings out and face them, you, dear reader, are coming along (if I haven't lost you already). To start with, let's talk sex. I mean, that's what this is about at the heart of the matter. We're all grown-ups here (hopefully). Oh, and get ready for a wee bit of TMI for those of you who fall on the prudish side of fence.

Michael and I have an absolutely lovely sex life. True, frequency is a challenge since we've had kids. But let's get real, find me any couple with little kids in a small house and I'll show you folks that are not swinging from the chandelier as often as they did before the babies came. However when we do have sex, it is...amazing. There, I said it. I'm not bragging, just sayin' (and right now my husband is reading this and dying a thousand deaths of embarrassment.) Truly, we have really great sex and I particularly enjoy my breasts in the process. Both of them. Alot.

What I'm getting at here is that this feels like an almost insurmountable loss...like something fundamental to who I am as a woman and who we are together as a couple is going to disappear under a surgeon's scalpel. A significant part of what makes me feel sexy and desirable will be ripped away forever and I am deeply mourning and rebelling against it all at the same time. I can't think about losing my nipple for more than a few minutes without wanting to cry my eyes out and dive into a bottle of Xanax.

Michael will love me no matter what, I know that. He will find me sexy no matter what. I know that too. But half of the equation of good sex is how you feel about yourself. Will I ever feel sexy or desirable again?

I want to have my nipple and my breast too. But I can't and that's not fair. Cancer has robbed me of them like a thief in the night. And the only thing that keeps me moving forward and actually going through with this mastectomy is that I somehow on some level do believe that if I don't give cancer my breast it will take my life.

As I write these words I realize maybe it comes down to this: I am trading a nipple for my life, for my kids to have a mother and my husband to have his wife, his lover. I am trading my former breast for a future with my family, not to mention the chance to pursue my own deep passions, my personal dreams...like writing poetry or that novel temporarily getting dusty right now.

I guess that's how I will have to try and think about this. It may be the ONLY way I can go thru with this. Yet even put into those terms I can't say it's a small price to pay -- it feels like a colossal, exorbitant and extreme price. But I'll pay it...only because I have no choice.

And that had better be it, God dammit! Because enough is enough.

I've finally made my decision

2009-06-05T13:39:00.000-07:00

After ridiculously thorough research bordering on obsessive, I've reached the most sound medical decision I think is possible. In total I have seen 5 breast surgeons, 4 plastic surgeons, 2 medical oncologists and today met with 2 doctors of radiology. I had an ultrasound to look at the suspicious lesions revealed by the MRI. There are a number of them and biopsying them all would turn me into a human pincushion. The point is that my right breast has multifocal carcinomas. Removing the amount of tissue necessary to ensure getting all of it barely qualifies as "breast conservation" -- at best you could call it a partial mastectomy. And even then, relying on radiation to zap whatever microscopic stuff could be missed isn't the safest bet in terms of recurrence, not to mention the cosmetic results could be very poor.

Bottom line: I'm having a mastectomy.

It will be a skin sparing one with immediate reconstruction (tho the creation of a nipple/areola is done months later, to let things "settle"). On the bright side I will also be getting a tummy-tuck, that's what they use to fill in the emptied "breast envelope". However there are some dangers & complications regarding that due to my thrombophillia, but I'll write more about that another time. Fortunately there will be practically no scarring on the breast itself, it's not like the brutal versions done in the old days. I may have a small bit of incision emanating out from the newly built nipple/areola, but other than that the rest of my skin stays totally intact.

In retrospect, just on the cosmetic/emotional front this has really been more like a choice between losing or saving my nipple in my mind. In a way I feel like I'm going to end up with a "nipplectomy" because the rest of the breast will look pretty normal even after surgery. If I had chosen to try and keep my nipple,tho, I've been counseled there's a better than good chance it would have no sensation anyway as the one tumor practically touches the areola and no doubt getting it out would involve the decimation of nerve endings. In addition I would have to have 7 weeks of radiation, which now with the mastectomy is not necessary. Radiation has it's own set of health risks, but it also can wreak havoc on the cosmetic results in a case like mine.

I have been most helpfully guided in the end by very caring women medical professionals, which I will write about another time. There's something comforting and reassuring about that. I've also met the best and the worst of the profession over all and am especially motivated to try and somehow work to change the system after this is all over, because finding out information and getting good care shouldn't be the province of just the educated or middle class woman. But I digress :)

I am as at peace with my decision as one could be under the circumstances. My family, both Michael and Megan (Danny's too little) have also come to the same conclusions and are completely supportive of my choice. My Meggie is a wise little soul and really seems to get this -- I'm so proud of her. The way she helps take care of her brother is particularly touching and gives me a sense of both pride and relief. They have eachother.

As to my husband, the rock and saint, he has been with me every step of the way. I am hugely lucky. With the exception of two times when we didn't have anyone else to watch the children, he has come with me to every appointment, met with every doctor, held my hand through every test. Even on those two occasions we dragged the kids with us and he stayed in the waiting room for a couple hours, trying to keep a toddler entertained (no small feat) just so I could have a chauffeur and shoulder to lean on when I got done. I have written little about him only because he's a quiet and unassuming kinda guy...but he is truly a hero to me, and Honey when you read this know that I could never have survived this process without you. I can only entertain surviving what comes next because you are with me. I love you and I know you love me -- that's a gift beyond precious.

Okay, before I get any more soppy, I wanted to add that I don't have a date yet, and while I'm leaning towards one particular hospital and team of docs there's just a few loose ends to tie up before I commit. I'll post when I know for sure.

Now, back to the gratitude front....

Thank you a thousand times over to every single person who has read even a paragraph of this blog, let alone taken the time to leave me the most wonderful and supportive comments or send me lovely emails. You all have been such a huge part of what keeps me going, I cannot fully describe the strength I have received from knowing you are out there. You are in my heart as I move forward.

Blessings to all and I'll post again soon.

I hate math

2009-06-02T12:39:00.000-07:00

Often when you read or hear about survival rates for women with breast cancer today the news is portrayed as good, in fact, REALLY good. And no doubt it is far better than even a mere decade ago. Plus there's lots of hope for further, even more rapid improvements in the near future, certainly.

Official survival statistics are usually expressed in terms of percentages. Take for instance "Stage I breast cancer" which is the stage it is (so far) assumed I am at. That staging touts as high as a 90% survival rate. Wow, how great! Oh, except...

...that's only for 5 years.

After that the survival rate goes down. And down. Until finally we get to 20 years and the rate has dropped to 64%. I haven't found any good statistics beyond that, which if you ask me doesn't bode well. So, in 20 years 64 out of every 100 women who had Stage I Breast Cancer will be alive. The other 36 women...

Okay, I don't want to be morose or defeatist, but I really hate these odds. I mean, I know I should be thinking positive and hope I'm in that group of 64 that's still alive in 20 years. And yeah, sure, the odds could be worse. But they could be a whole lot better too.

I suppose maybe at some point I'll get all into appreciating my life in the moment and living for today about this. But I am soooooo not there right now. Right now I'm heartbroken. Right now I'm pissed off. Right now, I'm scared out of my fraggin mind.

In twenty years I'll only be 65. Sixty-Five! That's still so young. Megan will only be near 28 and Daniel will be just half-past 22. Will I see my children live the prime of their lives? Will I get to see any of my grandchildren? Will Michael and I have some time to enjoy our "golden years" together? These are the type of questions often in the back of most people's minds as they age...but they just got moved to the forefront of mine, big time.

I know I can't reduce my own individual lifespan to a math equation...and that my life won't suddenly end at some magical statistical moment, of course. Sure, I plan to do alot of stuff to up my odds (oh my, you have no idea -- that's a whole 'nother blog in and of itself!) Yes, I know alot of people are going to say I shouldn't be thinking like this. But they also probably don't have cancer.

I do, and it's starting to sink in. And I am really sad today.

I breastfed a plastic dinosaur

2009-05-30T09:17:00.000-07:00

I’ve been careful about not getting undressed in front of Daniel lest he see his beloved ta-ta’s and be reminded to want them. We live in a small house with one bathroom so it’s not uncommon for the kids to see me in various stages of undress when I'm getting ready. Eventually that would change with my son, certainly…but not at age 2.

Things are different now.

Anyway, the other day I was discussing surgery techniques with Michael (what, like you don’t regularly have those kind of conversations?) and without thinking I lifted my shirt to show him on my actual breast. Daniel was like a magnet and suddenly right by my side, staring at my breast and smiling while he exclaimed, “Ta-ta!” like he had seen a long lost friend he thought had disappeared. I remained calm outwardly but inside I was already in anguish. I said as brightly as I could, “Yes, there’s Mama’s ta-ta, okay, Mama put her shirt down now,” to which he put his little hand up to stop me and said hopefully, “Have some, pease?” I had the awful, gut-wrenching task of saying no, and doing so as offhandedly as I could muster. I quickly tried to distract him and handed him a little toy dinosaur that was nearby.

Then he asked if the dinosaur could have ta-ta.

Before I could think of an answer he held the plastic creature to my nipple and joyfully smiled while it “nursed”. After that he wanted it to nurse off the other breast and by that time I was utterly powerless to refuse. A few moments later something grabbed his attention and I was able to stagger into the bedroom and cry my eyes out.

It’s taken me almost a week to be able to write about this and my keyboard is sopping wet now.

I think the process of gathering all this info, learning about my options and trying to make decisions has aided in distracting me at least somewhat from the reality of loss emanating from this whole thing. But eventually, and soon, my decision will be made. Of course then I’ll probably end up in a different flurry of activities to get ready…preparing things…cooking food ahead, planning schedules, getting organized.

But no matter how busy and engaged I am there are always these moments when it suddenly hits me again…Oh my God, I have cancer -- and my life, not to mention the lives of my little family, are now forever changed.

And this is only the beginning.

MRI showed more suspicious lesions...

2009-05-27T08:32:00.000-07:00

So, the nurse from the hospital where I had my MRI called and said that unfortunately it showed further "suspicious lesions" in the affected breast. The good news is that my other breast was clear, so Lefty, as I've nicknamed her, gets to stay.

If I am still considering breast conservation (formerly known as a lumpectomy) then I need to have an ultra sound of these lesions. Assuming for moment they can find them on the u/s, it will immediately and definitively be clear if they are just cysts. If not, they still might be nothing but will have to be biopsied -- the same way my original lumps were, with a core needle procedure (numb the breast, u/s guided needle takes a piece for pathology).

Okay, now, let's say they can't find them using ultrasound, which does happen. Then I will need to do what's known as an MRI needle biopsy. It's more of an ordeal just by virtue of being slid in and out of an MRI machine a few times, but otherwise it's pretty much what it sounds like. If you want a great description check out this post at Brenda's Blog From Paraguay -- Brenda is a fabulous writer and describes her experience vividly.

Alternatively, during any of these procedures I can always say stop, let's just do a mastectomy and forget all this testing.

But I'm not going to do that -- even though I am now leaning more than ever towards having a mastectomy.

Why?

Well, because, if there is further cancer in my breast, especially if it's in a different area, then it's pretty clear breast conservation is no longer a viable option. Which ultimately means that the day I walk in to a hospital to have them remove my breast there will be no doubt whatsoever that I'm doing the right thing. Sure, I could assume I am choosing wisely just by there being something else suspicious in there, but that's not the same as knowing. Knowing might actually bring me more peace.

I could also find out it's completely nothing...but I may still be leaning towards mastectomy because of these MRI results.

Here's why:

Imagine if I chose breast conservation w/radiation and I got this same MRI result a couple years from now. I'd probably be kinda freaked. Still, the survival rate for breast conservation vs. mastectomy is the same -- reason being, if you get a recurrence after breast conservation you are SO carefully monitored they can find it early, and then they just go back and do a mastectomy. Again, let me stress -- long term survival for either lumpectomy w/radiation OR mastectomy are the same.

So, what's the problem then, some might say...why not keep your breast for now and worse case scenario you lose it later? Well, one problem is the cosmetic result doesn't always turn out as good once you have scars, asymmetry, and radiation damage, depending on individual circumstances. The other problem is some women could feel like they were living their life as if waiting for the other shoe to drop. Depends on the person, the unique cosmetic possibilities, and the individual importance applied to either.

I find myself thinking lately that when this is over I'd like it to be as over as possible...I mean, it will always be with me one way or the other, even if I never saw my reflection in the mirror I'd know it in my being. But the more often I can put this experience behind me, or at least to transcend and transform it, the better. Which decision will help me personally do that is what I am grappling with. My breast may just be letting me off the hook now and making the decision for me.

I'll have the ultra sound next week...then I'll take it one step at a time, but I will be taking each step available to me because I have to know. That's just how I am.

As I mentioned in my previous post I have some more docs to see, plastic surgeons, but will update asap. Heaps of love & gratitude...always & forever!

PS: It was one month ago today I was officially diagnosed with cancer.

Updates, shopping & gratitude

2009-05-25T11:47:00.000-07:00

MEDICAL STUFF:

For every answer it seems I end up with 10 more questions.

The first plastic surgeon appointment was useful in that it opened up a whole new host of important considerations regarding surgical breast reconstruction processes and my thrombophillia...but in terms of answering my original inquiries it was less fruitful. I'm still no clearer on stuff like how breast conservation will look in my case and what nipple function potential there is, nor did I get satisfactory answers regarding nipple sparing if I go the mastectomy route.

Apparently the immediate breast reconstruction that I would typically have done after a skin sparing mastectomy is a bit more tricky because of my genetic clotting factors. This plastic surgeon, in fact, won't do the kind of reconstruction preferable because of it. I've read about special ways to monitor folks like me so I'm confident other doctors will and can. Oh, and just fyi, this isn't about a risk to my health at all, it's purely about a risk to the newly implanted tissue surviving -- worse case scenario is the new "stuffing" would fail and then would be removed --I'd then just have to use the less preferable saline implant.

I also had my MRI on Friday...since it's the holiday weekend I don't hold much hope for finding out answers before Wednesday. Alot is riding on this test, too. If there are questionable areas in my affected breast they will need further core needle biopsy...and if there are areas in my unaffected breast that will need to be biopsied too, of course. In the end if there is further cancer in my affected breast then a mastectomy is practically a given. If there is cancer in my presently unaffected breast...well, that's a whole 'nother can of worms. Oh, and fyi, the reason it has taken so long to have an MRI is that it's best done at a certain time in a woman's menstrual cycle.

So once again, it's the waiting game, biding time while anticipating test results.

Meanwhile I'm researching my little brains out so that the next plastic surgeon appointment is more productive. I'm also trying to get ready for all potentialities...and shopping is actually a big part of that...

SHOPPING STUFF:

I need certain post surgery clothes: First off, no over the head garments for a while with either surgical option, potentially longer for a mastectomy. Also, at first I'll need a larger size blouse/shirt to accommodate surgical breast and/or abdominal drains, special surgical bra and any swelling, etc. That's hopeful only for a few weeks at most, again, depending on my procedure(s). After that I'll just need my regular size but still nothing that goes on over the head.

So far I've hit Target and Sears, plus went to Lane Bryant as I am already sometimes an XL and there is no other size to go up to. I need uber comfy stuff to hang around the house recuperating in and then stuff that's decent to go for doctor visits or other necessary outings. And since it will be summer, it has to be warm weather clothing, too. I don't have enough yet, but I have a couple things to get me started. But with the exception of one blouse I would probably never have bought any of it if I didn't have these requirements, truth be told.

CLOTHING OF SPECIAL INTEREST TO THOSE WITH BREAST CANCER:

For anyone reading this who is or could be undergoing breast surgery in the near future, I found a great website: http://www.confidentclothingcompany.com/index.htm She is a fitness trainer and breast cancer survivor who designed active wear for women going through breast cancer treatment. The tops, especially, are VERY useful because they have movable pockets to place your cumbersome surgical drains in rather than trying to pin them to your shirt somehow. The material is also wicking, so good for summer wear and other treatment issues such as hot flashes for those going through chemo and/or hormone suppression.

:D NOW FOR THE GOBS OF GRATITUDE:

Last but by NO means least...I know so many of you have sent me more emails -- bless you a thousand times. I do read every one, just like I read each and every comment here on my blog(s). The last few days have been hectic and now this week looks like more of the same. Trying to make the best decision is taking up all of my time, beyond what I ever could have even imagined. But please, please, please know that reaching out to me in any way and offering me support is SO important, it truly means the world to me and is a crucial part of how I am coping with all of this.

I don't know what I'd do without you, my dear friends. I'll tell you, if I won the lottery tomorrow I would throw the biggest after-treatment party ever envisioned and pay to fly every single one of you & your families all to some exotic location where we'd live it up in one great big celebration, just so I could really show you the depth of my gratitude!

:D Oh my, can you just imagine it, lol???

But in lieu of that, just know that each kind word and thought is sustaining my spirit and giving me strength for myself, and even more importantly so, for my whole little family.

Thank you, and much, much love to all....

Tit for Tat

2009-05-20T18:10:00.000-07:00

Come on, I had to use that post title eventually ;)

Okay, so we have a tie! 2 surgeons say mastectomy, 2 say breast conservation and the 5th doc that was to be the hoped for tiebreaker says…drum roll please -- I can have either one!

By the time I got to the fifth (and last) oncological surgeon today I was already armed with lots of knowledge, a list of pertinent questions, and have become an old hand at the whole consult thing…and granted that may have been part of what made the visit go so smoothly. But I have to say I also liked her. She was friendly and easy to talk to and seemed to understand all my questions and not pass judgment on personal stuff like breastfeeding. She also was willing to give me objective data on my choices. She will do either surgery I want, with one caveat – she said “they” (and I’m assuming she means that hospital) will not do nipple sparing mastectomies -- something I have discovered in my research and want to know more about.

(Perhaps this post should have been titled, “How many times can Kayleigh use the word nipple?”)

See here’s how I see it in my ignorant laywoman’s mind:

Clearly one of my options is to have breast conservation that leaves me my own nipple essentially intact, perhaps with a significantly reduced breast size & deformed areola.

On the other side of the coin the kind of mastectomy I am a candidate for is what they call a skin sparing mastectomy, where they basically leave my entire breast intact on the outside and just take out all the bad stuff inside plus remove my nipple/areola. (what they put back in to make me a breast will be the subject of another post, but suffice is to say I might get a tummy tuck out of this deal!)

So then why can’t I have a nipple-sparing mastectomy as well, which seems to me to amount to the best of both those worlds? I mean, really…I just want my cancer gone, a normal sized breast, and my own nipple, which will hopefully still work, (and I mean in that special fun way)…is that so much to ask???

Okay, well, it may be, yes, lol. And to even have the possibility of asking questions like this is pretty freakin’ amazing considering a couple weeks ago I was vacillating between either planning my funeral in my head or imagining myself as some sort of one-breasted Amazon warrior.

But I digress.

In my research thus far the explanation for why they didn't do nipple-sparing mastectomies in the past was concern about microscopic cancer cells being present there since most cancer is ductal and all ducts lead to the nipple. The reason that isn’t a concern in breast conservation surgery is because they zap what’s left of your breast with radiation to kill those nasty little buggers just in case. However, with a mastectomy typically there’s no radiation, thus any stray little mutant cells left behind in a nipple could theoretically slip by and cause trouble later on.

But in recent years more and more nipple sparing mastectomies are being done because it's thought that the original concern over that area being more prone to cancer cells was exaggerated. Plus I've also read that they can actually zap the nipple & areola with radiation for a nipple sparing mastectomy just in case – and even can do so during the actually surgery!

In any case, clearly people are offering to leave me my nipple in breast conservation, so I need strong convincing arguments as to why not so with mastectomy before I can make my decision. I also feel like there are perhaps policies…formulas being used to determine what can and can’t be done rather than taking things on an individual health basis. The wheels of medical progress can move slow…I’m just trying not to get run over by them.

BOTTOM LINE:

If I choose to keep my nipple I need to know what cosmetic realities I will have to accept for my breast in order to do so, and if I choose a mastectomy where my nipple is taken forever and replaced with a replicated facsimile I want to know that it wasn’t possible to save it.

So, my quest is not quite done yet.

I am seeing two plastic surgeons, one tomorrow and one next Thursday. I am hoping they can answer my questions about the final cosmetic outcome, complete with pictures of their previous work.

In the meantime I do feel pretty well armed with knowledge about my health prospects, which is what’s MOST important. My prognosis is good thus far so I try as much as I can to focus on that, especially for the sake of my little family.

Will update soon as I can…much love and great big fat gobs of gratitude to EVERYONE. Thanks for coming along on this journey, it would have been so much harder without each and every one of you :)

updates, schedule, treatment, decisions

2009-05-18T10:52:00.001-07:00

UPDATES:

As I mentioned last post I saw 3 more docs in two days. There was the surgeon from Sloan I already blogged about who said a mastectomy was IT. Then a highly regarded surgeon from NYU said breast conservation was easily possible (they don't call them lumpectomies anymore, fyi) though I found her a wee bit vague on things like final appearance and nipple function. When I asked about that she said, "Do you mean like reacting to cold?" Um, no, that's NOT what I mean. I can't possibly be the only woman to care about, you know, THAT, can I?

I'll try an blog in more detail about her another time, if only for my own memory's sake.

There was also a medical oncologist who was MOST helpful -- and lucky me she's at our local hospital, only 15 minutes away! I'll get to her later.

So, for anyone keeping score, here's the tally:

2 surgeons say mastectomy, Englewood NJ & Sloan Kettering NY
2 surgeons say breast conservation, both NYU but from different offices
2 medical oncologists say either way, not an issue cancer-wise, Englewood & local hospital

SCHEDULE THIS WEEK:

So, I'm seeing one more surgeon (yes, I'm thorough) -- this one is a woman from Hackensack, a well regarded hospital in NJ.

But I'm also adding two more docs to the line-up -- both plastic surgeons. The one is from NYU and another from Hackensack. Oh, and I also have an MRI this week.

Busy, busy, busy. Who knew cancer was so time consuming? I need a secretary.

TREATMENT STUFF:

So, medical oncologist from local hospital was really nice and knew her stuff, answered a ton of questions, made my situation MUCH clearer to me -- plus it all jived with what the first medical oncologist said. The only caveat is she, like most, didn't get the whole breastfeeding thing. ("Really, a two yr old? Gee, I barely lasted six weeks with my kids!) Whatever. Besides, since I also liked that other medical oncologist from Englewood, I can always double check them against eachother in terms of second opinions on post-op treatments.

DECISIONS:

Breast conservation with radiation or mastectomy without radiation. That's standard. Whether I have either surgery does not impact my need for chemo whatsoever. It's my sentinel nodes that essentially do that.

It seems that it is my decision in the end. Truly, the survival rates for both are the same with my cancer profile, despite various docs personal leanings. What will help me make my choice is knowing/understanding the possibilities of these four things about each option, in order of importance to me:

nipple function (for breast conservation only)
recuperation
cosmetic appearance
future monitoring (more for breast conservation)

My thinking right now so far is that if I'm likely not to have nipple function and if recuperation is the same for each surgery then just take the whole thing...the skin sparing mastectomy pix I've seen look amazing, even the faux nipples look pretty good. But if there's any chance of my nipples working or if the recuperation is way more difficult with mastectomy....then I REALLY need to think some more.

As to chemotherapy:

If my sentinel nodes are clean (and they all keep saying they will be) then my tumor is sent to Oncotype. Oncotype does this genetic assessment of the tissue itself and comes up with a score. If I score low, then no chemo. Of course I'm assuming there's a borderline and heck, with my luck I'll hit it. So no matter what score I get I'll be looking for multiple opinions on my need for chemo, rest assured.

But wait, there's more!

MORE TREATMENT STUFF:

I will need hormone suppression therapy of some kind since my cancer is estrogen receptor positive (ER+). The standard treatment for pre-menopausal women is Tamoxifen for 3-5 years. Problem is I can't take it, blood clot risk too high for me. So, the only option is Arimidex and what they call "ovarian ablation" -- in short, shutting down my ovaries. This can be done with a monthly injection or by removing them, known as an "oophorectomy".

I cannot help but feel in my gut that if I went the drastic route of oophorectomy and instant menopause then maybe I could forgo the Arimidex. Yet even when your ovaries are gone there's still estrogen in your body. Needless to say I need to do ALOT more research, but there's time for that after surgery....up to six months at least from what Sloan Kettering doc said.

The reason I would like to forgo the Arimidex and would consider oophorectomy is, yup, you guessed it -- nursing. I can't nurse on hormone suppression drugs. But if I had no need for chemo, and if I removed my ovaries and could skip/postpone hormone suppression drugs, then I could resume breastfeeding Daniel.

If I can't, I'll have to let go of that. It will be excruciating -- for me. Daniel is doing fine. Every once in a while he mentions it, but he doesn't seem sad...it's like he's just checking. I keep pumping...just in case. Giving that dream up totally will be hard and I will mourn. But I do know the proper perspective here. Unless my MRI shows something bad, unless my sentinel nodes are cancerous -- I GET TO LIVE!!!!

In the end, that there is no end yet, is what matters most.

------------------------------------------------------------------------

So, there ya have it in a rather large nutshell. I'll be busy this week and will do my best to post. I've emailed some of you lovely people, long overdue I know...and I've got more to send out if you are one who hasn't heard a reply yet. Either way, know that my gratitude is deep and my love is strong.

Thank you!!!!

I wish I knew more ways to say thank you...

2009-05-14T17:35:00.001-07:00

(YAY! -- while I was writing this I found out I am BRCA negative!!!!!! I am so thankful, especially for my daughter. Can you hear the sigh of relief from here, lol???)

I've been on an odyssey the past day or so, three docs in two states. I'm exhausted. However I wanted to put something up here to let you all know I'm still going...still here. But mostly I wanted to say thank you. The comments on my last post were so supportive, so understanding -- I can't begin to tell you how much each of them meant to me.

In fact, all along this breast cancer journey I have been deeply struck by the heartfelt thoughtfulness of each remark...from frequent commentors that I have grown to consider friends, to lurkers coming out of the shadows, or people who just happened here from elsewhere.

And I want all of you to know that whether it be well wishes, support, advice, prayers or just witnessing...it has helped me...oh my, you have know idea how much...REALLY and TRULY you wonderful people have helped me get through what has no doubt been one of the hardest experiences of my entire life.

I am a better person for having read each and every word, for having known each and every one of you. Thank you is so small, but it's sent out to all of you in the HUGEST WAY POSSIBLE!

PS: Thought I should add -- I am still in decision mode, still gathering info. But to allay any concerns regarding time being of the essence: Several of the docs have let me know that approximately mid June would be the preferred deadline for a surgery to occur. The docs I am interested in having perform either type of surgery have assured me I have at least a couple weeks to officially book the date with them. Oh, and I am still awaiting an MRI, scheduled on the 20th, which is a crucial part of the pre-op decision puzzle.