Saturday, September 25, 2010

hair raising

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!

Friday, September 17, 2010

Photo finish


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.

Monday, September 13, 2010

And then, she went shopping...

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 :)

Friday, September 10, 2010

Now what???

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.

Wednesday, September 1, 2010

Biopsy update!

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 :)

Monday, August 30, 2010

MIA, lung biopsy tomorrow

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 ;)

Saturday, August 7, 2010

Going nuts...

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.

Thursday, July 15, 2010

Holding pattern

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.

Monday, July 5, 2010

Dodging bullets

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.

Thursday, July 1, 2010

It's not looking so good

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.

Tuesday, June 29, 2010

Towering Inferno

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.

Friday, June 25, 2010

Call waiting

(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.

Saturday, June 19, 2010

What's new

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….

Tuesday, June 1, 2010

It's not bad news...

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.

Friday, May 28, 2010

Here I go again

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.

Wednesday, May 19, 2010

A totally cancer-free post

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.






Friday, May 7, 2010

Luckily, I have pneumonia

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?

Tuesday, April 27, 2010

And then, there are miracles...

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.

Tuesday, April 20, 2010

A pink bucket load of crap


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.

Saturday, April 17, 2010

Out of the mouths of babes

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.

Thursday, April 1, 2010

A year ago today...

...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.

Sunday, March 28, 2010

Farewell to Thistle Dew

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 determination to stay there is actually what killed her in the end.  Although healthy well into her 80’s she was not very surefooted.  One tragic day she fell down the stairs.  Days later she died of her injuries. 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. 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.

PS:  it turns out not to have been goodbye...we are still here, apparently this'll still do :)

Thursday, March 18, 2010

Onward

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…

Thursday, March 11, 2010

hitting the wall

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…

Tuesday, March 2, 2010

I'm having a hard time

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.

Wednesday, February 17, 2010

So far, so good -- I think

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!

Wednesday, February 10, 2010

Chemo, phase II -- wish me luck

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)

Sunday, January 31, 2010

A tale of five pregnancies

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.

Tuesday, January 26, 2010

Big things happening...

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!!!!

Wednesday, January 13, 2010

Worth a thousand words...







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