in the eyes of the beholder

Beauty is by nature objective.  And like the old 1970's song says, everyone is beautiful in their own way.  Yet rarely do I ever appreciate my own beauty in the present tense.  Instead I tend to see it most in images from the past.  Whenever I see photos of myself  I think wow, I didn’t realize how nice I looked then.  The mirror of today often tells me a much different story than the lens of yesterday. 

When I created this blog and began posting outfit pix here it was an attempt at self-acceptance.  I was trying to appreciate my inherent beauty...a beauty I believe everyone possesses.  While society often has unrealistic ideals for what is considered attractive, I’m not interested in that.  As a nearly 50 year old woman those impossible standards left me in the dust years ago.  I’m talking about the kind of beauty that is personal.  The kind where you are pleased with the image in the mirror because you look your best and it represents who you are as a whole, real person -- not some narrowed view based on arbitrarily defined criteria meant for a ridiculously select few. 

But lately beautiful is a bit far from how I feel.  When I look in the mirror today I see a woman radically altered.  From a 40+ pound weight gain due to ongoing cancer meds, to a head of hair grown back after chemo that doesn’t feel like my own, not to mention the accelerated progression of aging as a result of treatment -- all have left me feeling a little less than pretty at the moment.  I confess, I’ve been avoiding the mirror, let alone the lens. 

 

I remember feeling this way before.  Sandwiched between my late twenties and thirties I began a weight gain spiral that eventually resulted in "significant obesity."  I disliked my reflection in the mirror then, too.  I don’t even have any pictures of myself from that period, but other people have one or two.  I saw them not long ago and you know what?  Once again, in the rearview mirror of history I could see myself as attractive...I could find plenty to recognize as beautiful.  What a shame I didn’t see it back then.  I would have gained so much from even a little bit more self-esteem. 

Maybe part of how we judge our own appearance should also be relative to our experience, to what is going on in our lives.  For me that means focusing on how I feel, on making  positive strides every day to regain my health.  I want to reclaim wellness post-cancer.  Meanwhile I will try harder to embrace the body I am in right now because it sure has been through a lot and served me pretty well in the process, all things considered. 

So I took these pictures. I posed on my back deck for the first time in years.  I may not immediately love what I see.  It may be obvious how cancer has changed me, and unwanted change is never easy.  But now I will always have these images to look at and remember I was beautiful...I was beautiful today.

 

rumors of my demise are greatly exaggerated

--Mark Twain

Several people who used to read this blog feared I had died when I stopped posting, thus the infamous quote for a title. 

Of course it's more than understandable they thought that. If I read a blog written by someone with breast cancer and they abruptly stopped posting, my mind would go there. It is where anyone’s mind would go.

But I’m still alive and doing well, cancer-wise. Four years have passed since my Stage II-b  diagnosis. You know, when I first heard “II-b” it sounded like "to be" and I was immediately reminded of, “to be, or not to be, that is the question.” Silly, I know. Besides, and with all due respect to Will Shakespeare...that really wasn’t the question I was asking myself, at least not at the time.

It wasn’t the question that rattled around in my head the last couple years since the end of treatment, either. That one was: Now what? As in, this destroyed my life as I knew it...how do I move on now?

In the midst of an extended crisis I always wish I could hit some magical button and fast-forward to the time just beyond it...naturally, who wouldn’t? During chemo I would lie in bed, feeling sick and weak, and try to send my mind into that future. I kept thinking, what did I want my life to look like after this was over? What was really important to me? Those were better questions. All I needed were the answers.

Turns out it wasn’t grand ideas or unfinished dreams I longed to spend my future accomplishing. What I wanted most was just a return to the little day to day stuff. I missed the gentle rhythm of my life. Morning routines, mealtimes, bedtime rituals, those quiet patterns that weave in and out of an average day – all those moments, those times I could no longer ebb and flow with because I was suspended in another time, a time out of time...a time to be ill.

And then something vaguely resembling an epiphany came to me. The insight was pretty simple...so simple that you may find it obvious. But at the time it felt very important to me. It still does.

The way you spend most of your days is how you end up living your life.

That is the sum total when all is said and done. I didn’t care about checking anything exciting off my bucket list. I didn’t care about fixing my laundry list of regrets. And they were long lists, let me tell you. Instead I just wanted to go back to doing the simple things I already spent most of my days engaged in.  That was enough because what really mattered most were all the tiny, precious daily moments of just being.

I thought I’d hold on to these poignant little realizations and after cancer treatment my life would be filled with deeper appreciation. But that’s not what happened. In fact, it was the total opposite. By the end of treatment I became bitter, morose and riddled with self-pity. I’m not sure why...maybe the hard knocks of a cancer journey fraught with some bad luck finally took its toll. Maybe it was a stage in the natural healing process. Or maybe those sorts of crystalline realizations about existential reality are just illusive by nature. Probably a little bit of each.

Just like for good ole Sam Clemens, someday the reports of my demise won’t be an exaggeration, they’ll be true. And so it will be for everyone eventually. But for today I'm still around. I get more time to heal, more time to question, more time for savoring the sweetness of life when I find it, for appreciating the many chances I have just to be here, just to be. In regards to "the question"...it certainly sounds like the best answer. 

six words: cancer treatment

Didn't kill me, getting stronger now.

fair day and another step begun

The title above refers to a young adult novel and the ballad it was loosely based on, neither of which at first glance really have anything to do with this blog. 

I read the book as a young person and the title always stuck with me.  All I recall about the plot is that it was a love story where the heroine had an almost unshakable faith in her destiny & was willing to do whatever it took to fulfill it.   

That doesn’t describe me much lately.  But when I thought about coming back here to blog again those words kept echoing in my mind...perhaps because they resonate as a statement of moving forward, and that’s what I want to do.  It’s what I am doing, a little at a time. 

Since the end of cancer treatment I’ve been lost.  Really lost. The same lost I refer to in some of my last blog posts -- here it is two years since then and to be honest not much has changed on that front.  I find myself wondering if maybe this is the kind of lost some people never quite find their way back from.  And I also wonder now if that really matters anymore. 

The directionless funk that has permeated my life these last couple years drove me into a depression.  I have been wallowing in fear, pointlessness and if only’s.  I functioned, but beyond that....?  Not much else.  Nothing has made sense; nothing has drawn me back into my own life.  

At first I thought if I could find my way again, whatever that meant, then I could get back to this (or perhaps some other) blog and maybe the rest would fall into place.  Writing in some form is a fundamental part of who I am, so without it I don’t feel like me.  But weeks turned into months turned into years and I couldn’t bring myself to write.  The more I couldn’t write, the worse I felt. I just drifted...aimless.    

Dropping this blog was a shame on many levels.  It might sound grandiose but blogging really did give me a deeper sense of connection – to others out there in the blogosphere and to my own sense of self.  Writing for even a small audience clarified my thoughts and feelings...and it showed me the trajectory of my experiences in ways I might not have noticed otherwise.  And...it was fun :) 

Not to mention I’ve “met” some of the most amazing people EVER.  When I went back and read some of the comments left thru the years it brought me to tears.  I’ve been blessed.  And I am filled with regret over not staying in touch.   

Anyway, lately it has slowly dawned on me that being lost might not be the worst thing to happen, both to a person and a blog.  In fact, I’m guessing there are plenty of other people out there who feel the same way.   So, I have no idea what this is about, but I’m gonna figure it out as I go along, one post...one step at a time.  And, why not?  It’s a fair day, and this is another step begun.

once in a pink moon

Saturday, April 27th  falls just on the waning side of the full moon -- a moon that is appropriately known as the "pink moon"...apropos for me, that is, because it will be the four year anniversary of my breast cancer diagnosis.   

I was actually planning a blog post last week, the first in almost two years.  But then the terrible bombings in Boston happened.  It just didn’t seem the right moment to inaugurate what I hope will become a new era for my simple little blog.   

I’ll put that post up after the weekend, but in the meantime I wanted to take a moment to talk about one of the many heroes to come out of Boston. 

Today I was deeply moved, as I’m sure many were, by the interview with Heather Abbott...particularly the part where she referred to how futile it was to dwell on the negative or focus on all the "what ifs".  That hit me hard - but in the best possible way.   I've done my fair share of obsessing over things that cannot be changed. 

Her eloquence and determination to move forward despite her injury was very natural, indicative of the inherent spirit of bravery she possesses.  Heather Abbott is the epitome of grace...a fitting topic for this, my first new blog post as I begin trying to pick up the pieces of my own life.

 

Since the pink moon heralds the renewal of spring, may it shine graciously on all of us... 

 

 

 

 

A day to forget

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

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...

…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

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

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...

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???

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!

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

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...

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

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

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

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

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

(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.