six words: feeling unwell

 

skipping this SWS

 

...or am I?

 

 

join the fun
click the button

 

underneath

what sleeps in your heart,

is the truth of it

curled up like a cat,

soft and purring

but indifferent

 

 

what sleeps in your heart

could it be that trapped voice,

silenced

like one drowning

under ice

who sees the surface

but is unable to break through,

mouth full of water

on the sharp thin verge of surrender

to the overwhelming

weight of cold 

what sleeps in your heart

is who you really are

and if you don’t see that

you may sink to the bottom

alone

and never wake up

 

 

 

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.

 

 

define this

Someone asked me recently if I was going to go back to posting daily outfit pix. I don’t think so, though I’m sure I’ll do one now and then. I guess the nature of this blog has changed a bit...as I have, certainly. Then came the question, are you going to change your blog name? I hadn’t really thought about that.  Does the name, Fashionably Later still fit?  

I’ve been getting back to basics on many fronts in my life so maybe I should try including this blog in that effort, too. Since one of the first rules of blogging is to find your niche, that means you need to define yourself. I decided to start there.  For inspiration I searched on the present name of this blog, Fashionably Later, and I got...well, my blog, but after that came a review in the Boston Globe of the Sex In The City movie from 2008 and some tumblr picture of a person wearing cut-off denim shorts. Not exactly helpful. So instead I tried Googling the phrase of origin, Fashionably Late.  Here is some of what came up from that:

 

-The refined art of being just late enough.

 

-When you show up late, so everyone will think you have a life.

 

-Getting noticed by arriving at that time, in other words standing out by being late.

 

-Arriving late to an event to give the impression that you are a busy, popular person.

 

I kinda like the first one. The second one made me laugh -- none of them really helped, though.  Maybe I should go back to the beginning. When I started Fashionably Later it was supposed to be a fun little wardrobe diary for a middle-aged mom, with a small slice of life tossed in now and then. I wanted to rebuild my confidence and prove that style was something any woman could create regardless of her size, vocation, budget or age. It wasn’t about making a major fashion statement...it wasn’t about fashion at all, not in the sense that word is typically used. For me this was about one woman’s "re-found" desire to look her best as a simple act of personal empowerment, and doing so a little later in life. I shared it for entertainment, and because I thought just maybe it would inspire someone else in a similar situation...you never know.

 

But then a funny thing happened on the way to the style blog – I got diagnosed with breast cancer. And what I had intended as a positive but fairly lighthearted endeavor quickly became something very different.

 

I wrote about my cancer journey, about my life, about things way beyond what I was wearing. And the people who once commented on outfit choices or accessories now were leaving me the most amazing comments that carried me through the worst time of my entire life. They gave me hope, they cried with me, they uplifted me and some even kept vigil when I wasn’t here. I “met” other women with cancer as well as a slew of talented and supportive writers...a diverse little gathering coalesced for me here. The outpouring from my tiny corner of the blogosphere was one of the most touching things that has ever happened to me. I’ll never forget it. Never.

 

A lot has changed since my cancer diagnosis four years ago. I’ve changed, my body has changed, my goals, even my tastes have changed. In some ways perhaps for the better, but to be honest, in many ways I still mourn for the woman I once was. I miss her. Of course, everything always changes...you don’t need cancer to have that happen. That’s just life.

 

As I try to find my voice again and recreate myself I don’t completely know what is in store for this blog (let alone anything else). I don’t see it returning exclusively to style commentary or a wardrobe diary, but I’m not ready to say goodbye to all that completely either. There are so many other things I want to write about, too, things I've got on my mind.  Perhaps despite typical blogging advice I shouldn’t focus on finding my niche or defining this blog any more than I should try to strictly define myself. I don't need any more limitations at this point in my life.

 

I've decided for now not to worry about descriptions anymore.  This is who I am, this is what I like and here’s what I feel like writing about. It might not always be cohesive, but I'm still doing it with my own sense of style...and definitely a little later than I had originally planned. Based on that, the name Fashionably Later still fits pretty well, I think -- so I guess in the end some things haven’t changed that much after all ;)

 

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.

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.

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.

And then, there are miracles...

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

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

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

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

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

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

Out of the mouths of babes

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

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

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

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

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

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

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

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.