random ootd photo & new hair!

It's summer time and the living is easy.  Let's have a random style related outfit of the day post, shall we?

The big news is (drum roll please):

I got my first hair cut in 4 years!

Yup, that's right, four years ago I got my last cut before chemo. After treatment my hair grew back very slowly, and very differently from how it was.  First it came in tight little curls, then course, wirey waves.  It didn't grow evenly either.  So I simply trimmed my bangs and kept cutting off strange wayward waves until something akin to my previous hair emerged.  It was finally time to get a real grown up hairstyle again.  The result is this simple layered bob.  I like it...though it is a wee bit shorter than anticipated. 

Anyway, I wore this outfit last week when the weather took a cooler turn.  We've been calling this old zebra striped blouse from Kohls my magic top...it seems to go with everything...paired with any color cardigan it works.  It has also fit me at several different weights -- yeah, it really is magic.

The new lightweight cropped cardi is from Target and I'm in love with the orange color.

My dark jeans are Sante Fe bootcut from the Avenue.  The bone colored Dansko Sissy sandals are thrifted and I live in them for the summer...truly the most comfy pair of shoes I own.  I often find them for sale new on eBay and have them in other colors. 

So, there you go, an ootd.  Hope everyone enjoys these early days of summer!

confessions of a slow-baked couch potato

I am so busy doing nothing, that the idea of doing anything — which as you know, always leads to something — cuts into the nothing and then forces me to have to drop everything.

~ Jerry Seinfeld

 

I just might be a hardcore couch potato.  There, I said it.  The truth is, I love to sit around.  Of course, I’m not exactly doing nothing.  I do a lot while I lounge about.  Talking, reading, writing, thinking – these are my favorite pastimes and conveniently all can take place from my living room sofa.

(Does anyone remember that children’s show The Big Comfy Couch?  Well, my dust bunnies might be bigger.  Seriously.  Oh, and I wish I had as much cool stuff tucked under my cushions as Loonette the clown does, but there’s just lint...and aforementioned dust bunnies.) 

Don’t get me wrong, I have to get up off the couch plenty.  I exercise, run errands, do laundry (now and then), cook for and feed various people, even clean once in a while.  Okay, all kidding aside -- I don't channel surf, nor do I gorge on junk food and I’m also an animated person in my demeanor.  People even describe me as energetic and enthusiastic...and I am, just not by inclination. Yes, if only they knew the truth, that by nature I’m more of a sloth.  Now, sloth is considered a sin by some and a trait to be ashamed of.  I guess I have been embarrassed by my slothiness at times.  Everyone else seems to be so busy that I tend to feel a little guilty.  Or at least, I used to. 

We live today in a culture of busy is better.  Ask someone how they are, and more than likely the answer will be “busy” – complete with the litany from an exceedingly long to-do list.  This is not necessarily a good thing.  An article in the NY Times last summer refers to busyness as trap, even further, as a means of hedging nothing short of existential angst.  I’ve noticed that the complaint of being over extended is almost treated as a badge of honor.  Everyone is trying to cram so much living into their lives that they aren’t actually living IN their life – instead they are continuously burying every present moment with frenetic activity, and often as a means for distraction.  

(There are people in this world for whom free time truly is a luxury.  They work harder in order to survive than most of us can possibly imagine.  People in those circumstances are obviously not busy for the sake of being busy.  To them, no doubt, this could all sound churlish or elite;  they should have such problems.  Mindful of that let me just say – busy is clearly relative.) 

As I blogged about recently, during breast cancer treatment I did a lot of reflecting on what mattered most to me.  When my mortality seemed immanent I didn’t care about projects I’d never complete, activities my kids didn’t participate in or how messy my house got (as if).  Every single ounce of guilt or expectation went right out the window.  Think about that -- no expectation, no guilt.  It was a rare opportunity, a moment of unprecedented clarity for me.  And as I went thru the mental files of my life I realized some of the best memories were the times I just sat still and talked with my children...listening to all their thoughts, great & small.  It was those precious moments with no agenda, no pressure to accomplish anything, that gave me great joy.   

I’m not suggesting everyone sit on their couch and vegetate for the sake of happiness.  Things need to get done, sometimes a lot of things...and sometimes we want to engage physically.  Being active is healthy; in fact, it’s one of my personal goals, to be more active.  But it’s another goal of mine to let go of as many inessential activities as possible...to gently cull from my life what is unnecessary, because being busy is, in my opinion, decidedly not better. 

Kids need ample unstructured time to let their imaginations grow...and so do us grown-ups.  We need time to slow down, to stare out the window and day dream, to be creative not as a means to an end but for the sake of creativity itself...we need time just to let our minds wander...we need time to be.  Socrates said an unexamined life isn’t worth living.  If you are too busy filling every moment with a flurry of activity then there’s no time to examine anything to begin with, let alone much of any substance worth examining when all is said and done.  Busy is not only not better; it can be the very thing that, instead of filling your life, leaves you completely empty.

I found out there are others interested in letting go of busy, such as those in various slow movements --slow food, slow home, heck, there’s even slow fashion!  But truthfully I feel like some of these slow advocates are still too ambitious for a slacker like me.  Perhaps my speed isn’t slow, it’s off -- as in turn off everything, sit down and settle back for a bit, get reacquainted with your family, your friends...and your own self, too.    

Like at this very moment...I am sitting (where else) on my couch typing these words.  My kids will be up soon, and the first thing they will do is come sit next to me, curling into my waiting arms all groggy and still warm from sleep.  I’ll put this laptop aside and breathe them in, take a moment to absorb the sweet scent of childhood in its precious brevity.  We’ll talk about what they dreamed last night and what they want to do today.  I’ll remind them we have chores and schoolwork, but after that the day, this day, is ours.  We’ll begin it from this place of centering, the middle of our lives and our home, this humble, slightly sagging, well-worn sofa.  The dust bunnies will be there, too, lurking...and that’s okay.  They can hang around for a little while longer...I don’t mind.  I have more important things not to do.

 

 

angelina jolie

I thought about doing a blog post regarding Angelina Jolie's prophylactic mastectomy.  It goes without saying that we have very little in common, though...even cancer-wise.  I had cancer, she didn't, I tested BRCA negative, she didn't, my mother is still a alive, still surviving, sadly hers is not.  Even our mastectomies were different -- hers was bilateral and used implants, mine was unilateral and used my own tissue for immediate reconstruction. 

Yet it occurs to me in the most fundamental way she and I do share the important issues.  We are both mothers.  Cancer has touched us.  We both did whatever we could to keep it from taking our lives. 

There is a lot more to say on this subject, especially from the perspective of those whose lives have been touched by cancer...but perhaps no one has said it quite so well as Nancy, from the blog Nancy's Point.  I urge you to read her piece on Ms. Jolie.  It really gets to the heart of the matter.

Of course I'm hoping for a future where our daughters (and sons) never have to face these impossibly difficult decisions...a future with nothing to fear from breast cancer.  But until that day, staying informed is our best weapon. 

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.

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.

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.

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.

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.

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…

brief update

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

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

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

Hope everyone has a happy new year.

Michael

Hold that menopause

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

Well, scratch that.

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

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

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

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

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

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

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

Of towers & tumors

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Musings on my present style

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

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

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

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

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

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

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

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

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

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

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

But I digress as I kvetch.

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

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

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

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

...literally & figuratively.

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

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

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

This link explains everything for those interested or needing info.

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

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

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

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

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

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

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

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

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

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