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. 

six words: cancer treatment

Didn't kill me, getting stronger now.

A day to forget

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

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

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

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

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

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

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

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

Joy To The World

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

Do you have enough joy in your life?

What do you do that brings you joy?

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

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

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

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

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

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

Would I still know it if I saw it?

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

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

And then, 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.

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…

hitting the wall

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

And that sucks.

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

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

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

Cancer changes everything.

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

But I’m not there yet.

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

Till next time, thanks for reading…

I'm in love

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

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

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

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

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

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

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

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

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

I would totally love this house. I already do.

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

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.

First post-op photo!

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

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

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

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

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

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

Musings on my present style

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.

UPDATE: The good, the bad, & the ugly

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

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

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

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

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

Post op post

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

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

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

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

I cannot seem to bring myself to look.

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

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

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

Fare thee well...

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

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

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

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

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

Wow, I hardly know what to think!

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

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

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

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

Amazing.

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

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

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

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