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!

in the eyes of the beholder

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

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

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

 

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

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

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

 

rumors of my demise are greatly exaggerated

--Mark Twain

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

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

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

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

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

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

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

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

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

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

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

six words: cancer treatment

Didn't kill me, getting stronger now.

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.

hair raising

I have a love/hate relationship with my wig. Okay, maybe that statement is a bit strong. Let’s just say it reminds me of having a haircut that you’re not completely sure of…you know, it’s not the worst style you’ve ever had but you’re not all that crazy about it either.

There are a few things I like about the wig. For one thing it doesn’t seem to look like a wig, or at least that’s what everyone says whenever I reveal the truth. People seem to be genuinely shocked that it’s not my real hair. And a wig is very easy to maintain – just put it on, straighten it out and go. It’s also more comfortable than I thought it would be and always feels secure…no sense of it slipping or blowing off.

What I don’t like about the wig is the shape, or cut if you will…there’s something a bit off about it. Maybe too full on top? Too thin on the bottom? Not sure. It’s not the worst style I’ve ever worn, but if my hairdresser had done it, next time I’d tell him to leave it fuller on the bottom and not so poufy on top.

Gosh, I miss my hairdresser.

Which brings me to my own hair…at first it took a long time to even start coming back in…like a scary long time. And then when I finally began to see faint evidence of growth it was only on the sides and the back. As each week passed I became more and more alarmed. I mean, I looked like a balding man, as if I had a receding hairline. Of course it didn’t help that little Daniel kept saying I looked “just like Daddy”…(I will SO remember that, Kid!)

My concern was not just paranoia. Unfortunately there is a small risk of permanent hair loss with one of the chemo drugs I took, Taxotere. (Let it be known tho that while the other common choice, Taxol, doesn’t have the same risk regarding hair loss, it may instead have a slightly higher rate of causing neuropathy.)

Anyway…just as I was about to totally freak out, thankfully the front and middle finally began to lightly fill in.

However, my hair is a completely different color! It is very dark, sort of an ashy brown. From what I’ve heard it often grows back darker on those with lighter hued locks. After about a year or so the dark color starts to fade out and the original color usually returns, although sometimes that doesn’t happen. A number of women will also end up with very different hair texture after chemo…again, sometimes it eventually returns to its original state, sometimes not. Typically those formerly with straight hair will have curlier hair after, not as often the other way around. Since my hair was naturally somewhere in between, sort of wavy, who knows how this will all turn out? It’s hard to tell anything much when it’s barely an inch long.

For now I’m attempting to just go with it, to varying degrees of success depending on my mental state at any given moment. I’m trying to be patient and just take it as it comes – not like I really have much choice in the matter anyway. On the bright side I may use this as an opportunity to try hair colors and styles I never would have dreamed of experimenting with before. So in the end I guess you could say this is sort of a once in a lifetime opportunity…at least all things considered it had certainly better be once in a lifetime!

Photo finish

Last November I blogged about what my mom wore to chemotherapy when she had breast cancer a couple years ago. I decided that when I went for my own treatment, rather than dress strictly for comfort alone, I would also try to put together and wear outfits that made me feel good about the way I looked, sort of as an act of empowerment. I also planned to take pix throughout.

But I didn’t take pictures.

Mind you, I actually did manage to dress pretty cute for every single infusion. In fact, chemo-day was practically the only time I donned real clothes, the only time I wore my wig or tried to put on any make-up. Most of the rest of the time I spent in baggy sweats, bald, no make-up, laying around and trying not to completely cave in.

On chemo-days, though, I made the monumental effort to look better, and it did make me feel stronger. But whenever I would catch a glimpse of myself in the mirror I was downright unrecognizable, though to someone who didn’t already know me, well, they might never have guessed I was in the midst of cancer treatment. Dear Michael used to lovingly joke I had better start looking worse otherwise people wouldn’t believe I was sick.

But all the same, I never felt like posting a picture.

I had wanted to take photographs during treatment as a sort of visual record of the experience, something tangible to illustrate the evolution I’d inevitably be going thru. See, when I was obese I never had any pictures taken. For almost ten years of my life there’s scarcely any evidence of me existing. I’m not there in the holiday photos…barely any wedding pix, certainly no candid vacation albums. So many memories are just in my head without anything to show or share. I virtually edited myself right out of my own life. And once I lost the weight I realized what a shame that was, such a waste…how sad. I vowed I would never do that again.

But when reality hit and the chemo side-effects took their inevitable toll the thought of seeing all that laid out in living color, let alone plastered in the blogosphere, became much too painful -- I completely changed my mind. In light of what was going on it just didn’t seem important. Frankly, I wasn’t sure I wanted to memorialize any of that in pictures for posterity.

After treatment ended and the summer months wore on I still didn't want any photos, for here or anywhere else. Understandable, I’d been thru a lot…but…would I ever? I secretly mourned the possibility that I might not. That would feel like yet another loss to cancer amongst so many others.

But then, very slowly, I started to feel a little better, and subsequently my appearance in the mirror reflected that back to me. Amazingly even as the whole pulmonary nodule episode unfolded and wracked me with fear to my core…despite even that, bit by bit I started to vaguely recognize myself.

Day by day I look more and more like me – and I’ve decided whether it looks like the same me as before is totally beside the point at the moment. What really matters is I am alive…I’m living my life and getting well again.

Now what???

Today is my 47th birthday. We’re not doing anything particularly special, oh, they’ll be cake and a nice meal, some presents from Michael & the kids. But I didn’t want a big tadoo, just a regular birthday like I’ve always had.

That might sound strange, I mean, shouldn’t I be dancing in the streets since pretty much dodging the mother of all bullets, what with no lung metastasis?

Incidentally, I spoke to my oncologist last night (she calls me at home pretty often, isn’t that nice?)…anyway, the final report came in from the “lung biopsy that wasn’t”. According to the CT scan all the pulmonary nodules seem to have essentially resolved themselves with the exception of one – there’s no evidence of any of the rest. Hard to believe, isn’t it? The lone hold out got 1cm larger than it was from a prior scan, but that could be explained by how CT imaging is sort of sliced. Imagine an orange, if you sliced it towards the end it would appear smaller in circumference than if you sliced it in the middle. So this last nodule might even have gotten smaller and it just didn’t appear that way.

The plan is to re-scan in a few months. I asked her if it was okay to wait until after the winter holidays and she gave me a resounding yes. She said we can be VERY confident it’s not a fast growing metastasis, and pretty darn confident it’s not any kind of metastasis at all…nor is it likely to be a new primary cancer either. All things considered, I’m moving on and not worrying about this anymore.

So why am I not celebrating my ass off?

I’ve been thinking about this a lot. Perhaps there are phases you inevitably pass thru when you have cancer, and I've sort of suffered from arrested development, if you will. The way I presently see it there's four phases:

1. The discovery and diagnosis stage, when you are finding out what you have and how to treat it, if it’s spread and what your prognosis might be. It’s a crash course in your own particular cancer situation and frought with the kind of decisions that no earthly person should ever have to make.

2. Then there’s the treatment phase itself…surgery, chemo, radiation, hormonal and other ongoing therapies. For some of us, all or part of the treatment may continue for many years, but chances are the intensive remedies like surgery and chemo will be relatively short-lived, in the grand scheme of things.

3. After all of that comes the healing stage where you go thru a physical recovery from your treatment. You may need to adjust to a drastically changed body, severe side effects from medications will gradually diminish, wounds will heal. Permanent damage will be assessed and you will learn to manage various conditions and any ongoing medications.

4. Finally you enter what is hopefully the last phase of your voyage – continuing on with your life in the wake of having had cancer. Some of us have to do that part while knowingly living with cancer, some of us get to do it “cancer-free” – hopefully for a long, long time. This is when you begin to work on recovering from the emotional wounds, maybe the most difficult recuperation process of them all.

For the average woman with breast cancer it takes about 9 or 10 months from discovery to reach that 4th phase. Clearly with all the obstacles thrown in my path my journey has been quite a bit longer. It’s been nearly 18mos now since discovering the lumps in my breast. So even tho technically my last treatment was at the end of April, I’ve been stuck, left in a holding pattern while waiting to find out whether or not the cancer had already spread. Now that pause button has been released and it’s time to fully move into the fourth phase.

Physically I’m left with the aforementioned pulmonary nodule, major scars, vast areas of numbness, mild lymphedema, only a little hair and some extra pounds (tho less since I’ve lost a bit). Menopause has been tolerable so far, but I am experiencing some body aches and crankiness from my estrogen deficit. Fatigue is lifting, but still there.

Emotionally? I don’t even know where to start, thus the title of this post and why I’m not exactly partying. I think it is all hitting me full force now…OMG, I had cancer?!?! I have radically changed. I will never be the same. There’s nothing left to distract me from facing this head on anymore….nothing to learn, no treatment decisions, no physical pain, no wounds left to heal, save for the giant gaping one in my psyche.

So it seems I am now, finally, a breast cancer survivor. On October 1st, the first day of breast cancer awareness month, it will be 18 months exactly since I sat down to nurse my toddler son, and with my breast in hand found the lump that would destroy my life as I knew it, leaving me standing where I am now….pretty beat up, sort of stunned, more than a little lost, and very, very much alive.

A year ago today...

...on April 1st, 2009 while touching my breast as I was about to nurse my son I felt a bean-sized lump. I tried not to worry, thought maybe it was something breastfeeding related, but knew I needed to get it checked right away. My primary care doc is less than a mile from my house so I decided to just show up first thing and get a script for a mammogram. As I sat at my dining room table the next morning waiting for her office to open I continued to absentmindedly feel my breast. It was then I found the other two lumps. I looked at my husband with sudden clarity and said, “I’m screwed.” It took 26 more days to get the diagnosis of invasive ductal carcinoma.

Since that day last year I have had a mastectomy and reconstruction, discovered the cancer spread ever so slightly to my lymph nodes and have gone through the wound healing process from Hell thanks to skin necrosis. I experienced an SVT after port placement, had almost a dozen chemo infusions and now have been diagnosed with lymphedema. To say this last year sucked more than any other year of my life would be the understatement of all time.

But I’m still here. My kids still have their mother.

That doesn't mean I am positive or grateful or even contemplative. That doesn't mean I haven't cried my eyes out a dozen times just this week alone. It just means that I know I have to hang on, there isn't any other alternative.

So today I will go to the infusion room at the hospital for treatment and joke around with the nurses and all my chemo comrades. We’ll hang out in our vinyl recliners while poison drips into our veins and we’ll laugh…because we always do.

Yup, today I will laugh, and for at least right now, that will have to be enough.

Farewell to Thistle Dew

So, amidst my various health issues there's been an additional saga going on regarding the house we're buying . One thing after another has delayed the purchase. But as of today we are looking at a closing date of around mid to late May (barring anymore unforeseen glitches). All this means we will have to pack up 16 years of our life here at the cottage in a matter of about six weeks. It seems an almost impossible task.

This is actually the longest I have lived anywhere. From the time I first left my parents home at 17 until I came here at the age of thirty I moved over ten times. Of course, I wasn't moving in and out of houses, just apartments or back home with the folks...and I didn't have two kids to pack up back then either so I traveled a little lighter. But clearly I'm a little rusty at the whole moving thing now after all these years of staying put. Guess you could say this stone has gotten quite mossy for lack of rolling ;)

The process of packing inevitably inspires a few trips down memory lane as you dig around the dark corners of basements, attics and closets. You can’t help but start thinking about your past, good bad or indifferent. That will be an about face for me of late since everything has been so hyper-focused either on the immediate present of illness or the uncertain future of questionable longevity. Perhaps as nerve-wracking as this moving ordeal will be it might also serve as a good thing -- a welcome change of perspective as I look backward for a little bit. It will be a chance to sort thru some of the junk, both literally and figuratively speaking.

I remember when my mother sold the home I was raised in. While I loved the gracious old house itself and I do have some fond memories growing up there, there were also quite a few recollections I would have gladly not packed up and taken with me. But even with all that, I still found myself feeling very emotional as I stood in what was my old childhood bedroom, the last one to leave the house on the closing day. I whispered goodbye aloud because it felt like the house needed to hear it as much as I needed to say it. For a long while whenever I drove by the street I couldn't look, couldn't bear to see the evidence of someone else living in my home.

My late grandmother kept the house she raised my father and his sister in till the day she died. That house was her life and her determination to stay there is actually what killed her in the end.  Although healthy well into her 80’s she was not very surefooted.  One tragic day she fell down the stairs.  Days later she died of her injuries. It was a shocking end and seemed so preventable. In fact all of us had tried to get her to give up the home, to move into some sort of assisted living arrangement or even just a single floor condo or flat. But she had packed the house from cellar to rooftop with trinkets and treasures. And then there were her cats…if you were a stray within a 50 mile radius you knew to go to Hazel’s house – at one time she had nearly a dozen cats. She just couldn’t imagine limiting the population of either felines or material objects to fit into a smaller space.

After she died, some in my family were filled with regret and remorse for not having tried to force her into leaving, myself included. But in retrospect I think her life ended as she would have wanted. The prospect of uprooting her self and her belongings might have proven worse and hastened her death more than the fall. She died in her beloved home. That is where she wanted to be after living a long and full life. That is how she wanted to die. I understand that more than ever now.

I’ve never felt quite that way about any place I’ve lived, you know, loved it so much that I would make such a significant sacrifice. But I can imagine feeling that way very easily…I’ve always been a born romantic when it comes to houses.

The house we live in now is a wonderful little place, but it never quite felt permanent…it was supposed to be a starter house though we ended up staying way longer than we originally intended. In fact we actually tried to move once before, years ago. We had a buyer at the ready but when we began hunting for a new house it quickly became apparent that even by spending more money we wouldn’t be able to find anything that we liked all that much better in our price range at the time.

After we’d returned home from what ended up being the last day out with the realtor, my husband stood in the driveway, looked at the house and said what I thought was, “Thistle dew.” It took me a few minutes to realize he’d actually said, “This’ll do,” as in this house would do instead of moving. From that day forward our little home was named Thistle Dew Cottage. It fit. All these years we’ve thought it wasn’t grand or very special, but it was fine, it was quite nice. It would do.

And now it is finally time to say farewell. Some of the very happiest times of my life have been spent in this house...both my children were born while we lived here and Michael and I started our married life together shortly before we moved in. We've surely faced our share of challenges and weathered storms here too, especially this last year. This house has contained it all, it's part of the very fabric of our memories, the background for the most important moments of our lives, good and bad. And even though we are moving up, going somewhere bigger and better it will be very hard to say goodbye. Thistle Dew Cottage turned out to be special after all, just by virtue of being our home, the place where our lives happened around us. Within these walls a family was created. I will miss this place and hold it in my heart forever.

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

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 having a hard time

There appears to be no light at the end of the tunnel because there is no end to the damn tunnel itself. I am having symptoms of lymphedema and will be seeing the physical therapist on Wednesday. This is devastating to me. I can’t seem to catch a break.

I’ve postponed posting about this because when things are at their worst it’s sometimes hard for me to blog or even to socialize in person. In a strange way I feel like I’m letting people down by being so negative, so defeatist. But perhaps that’s not being fair to both myself and those who care about me, which is why I’m throwing this out there.

So, there you have it – I am neither strong nor positive at the moment. I feel panicked and scared and depressed beyond belief. I don’t want anything else to deal with, I feel like lymphedema is just too much for me on top of all I have endured.

I try to remind myself that there are those in the breast cancer community that have fared far worse than I, women that would envy my situation in general. I’ve read heartbreaking blogs during my journey written by women that, like me, were hopeful they would do their time in treatment and then move on…women who sadly aren’t here anymore. I’m still here. My kids still have their mother. I still have a chance to live. That is what I try to hold on to and most of the time I can. But right now I am having a really hard time.

Thanks for reading…till next time.

So far, so good -- I think

Thought I'd give an update...

The Taxotere, as promised, doesn't seem to make me very nauseous, thankfully (YAY!). I felt a bit queasy on the first and second day, but admittedly some of that may have been nerves.

Speaking of nerves, so far I have had faint symptoms of some slightly numb toes on one foot and the side of my hand felt a little tingly. I say these symptoms are faint because at this point I can't be sure if they are my imagination or what. Truth be told it's possible I am being hyper vigilant.

Part of the reason things might be going better than expected is because at the last minute my oncologist switched me to a different infusion schedule. Rather than going every three weeks I am having weekly infusions...this means the drug enters my system in smaller doses at one time. It is supposed to be equally as effective and the same amount of Taxotere is administered over all, but in smaller quantities there has been some evidence of less side effects, such as the neuropathy I fear.

I am also going to be taking some supplements that have been shown to help combat neuropathy, such as increased B vitamins, Melatonin and the amino acid L-Glutamine (all w/doc's approval).

These frozen mitts are something I'm considering, too -- they look like boxing gloves that you freeze and wear on your hands during the infusion (or they have booties for you feet, as well). They have been shown to prevent fingernail loss, something else Taxotere causes, and the thinking is they may also protect the periphery nerves which are most vulnerable to damage from taxanes. However they are darned expensive considering you have to buy at least 2 pairs and there is concern that if used improperly they may actually hasten nail toxicity (and possibly nerve damage) by causing something called a vasodilation reflex -- in a sense if the gloves lose their coldness too soon it can cause an opposite reaction and open up the blood flow more, creating better circulation which is the complete opposite of what you want...so I'm not sure about using them. Additionally, the lymphedema therapist I saw suggested that prolonged exposure to cold can be a trigger for lymphedema, so I'm left wondering which would be worse, neuropathy or lymphedema...and which would be more likely? Don't know.

But otherwise, all in all as of now I am doing okay, which is great news for a change :D Tomorrow I go for my second infusion of 12 total. My last infusion is April 15th...not normally a day one celebrates, lol, but believe you me, it will be a freakin' huge happy day for moi!

That's it for now...until next time, thanks for reading!

Chemo, phase II -- wish me luck

Tomorrow I begin phase two of chemotherapy, taking the drug Taxotere. I've just finished Adriamycin and Cytoxan which are supposed to be the worst part...however some women report that the taxanes (Taxotere, Taxol and Abraxane) are actually harder to deal with. Who knows?

I am probably more afraid of this regimen than the former because of the possibility of permanent neuropathy -- particularly in my hands. I fancy myself a writer, after all, and I need my fingers to to be agile enough for typing on a keyboard. The thought that after all of this I can't return to a normal life doing what I love....well, that hardly seems fair to say the least. But then again, none of this is fair.

Forgive the pity party, but it seems each leg of this breast cancer journey has had some huge hurdle, some unexpected turn of events. Major skin necrosis after reconstruction, an SVT after port placement and the worst nausea I've ever experienced after my first round of chemo -- despite all the assurances that the anti-nausea drugs work wonders. So is it any wonder I'm expecting the worst case scenario? As my oncologist says, I've been pretty beat up lately.

So...I am filled with dread, I don't mind telling you. But I'm forging ahead despite it. Okay, not exactly forging...more like limping ahead weakly.

Wish me luck (and you can call me Bitch, too, if you wanna)

Big things happening...

It’s a sad reality that by the time I start to feel human again it’s just a couple days till the next round of chemo and I find myself cramming as much “normal” into those few days as possible – time with my kids just being regular old Mama, time with Michael where he doesn’t have to take care of me, and time just to enjoy not feeling nauseous.

Thursday is round 4 and the last of this drug regimen. I begin four more rounds of a different drug a couple weeks after that. That will take 3 months. It’s daunting…very daunting.

But for a few moments I’m going to try not to think about all that and just write about something else, something not remotely chemo related. Something rather pleasant, actually :)

BIG THINGS have been going on and I haven’t had a moment to blog about them. Remember this house?

Well, we’re buying it!!! And we’ve sold our house – in fact we had a bit of a bidding war and even got a smidge more than our asking price, can you believe it? Good thing too, since the new house is in need of serious work. The present owner will likely have to replace at least part of the septic system, the hot water heater, cracked chimney flue and a few other things…we need to eventually replace all the kitchen appliances, all the flooring save for 2 rooms (living & dining rooms which are hardwood and just need sanding) plus pretty much redo 3 bathrooms. Oh, and paint…. lots and lots of paint.

The place is obviously a handyman special, but honestly that’s why we can afford it. Aside from all the updating it is a lovely and gracious home with 4 bedrooms, 2.5 baths, a huge kitchen plus a family room, living room and formal dining room. Oh, and a spacious, welcoming foyer, back mudroom and laundry on the 1st floor. It’s also on a great cul-de-sac…the location is truly stellar -- there are protected woodlands that go on for miles behind the house. Plus,check out this view from the back deck:

Well, that’s my news and about all I can manage right now, but I just HAD to share some happy stuff (for a change) with my beloved readers. Thank you for your continued support and best wishes, they are precious to me and my family, believe me.

Be well and wish me luck!!!!

Worth a thousand words...

Round 3 tomorrow.

I'm still here.

To all the dear people that have commented -- your thoughts and prayers have meant more to me than mere words can say, my appreciation runs deep and I will never forget all your kindness. Know too that my children and husband have had their spirits lifted by the loving thoughts left here as well, and for that especially each and every one of you will forever be etched upon my heart in gratitude.

Thank you doesn't even begin to cover it, but I hope it will do.

Blessings to all...

Kayleigh

brief update

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

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

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

Hope everyone has a happy new year.

Michael

I had my first chemo!

Finally.

And I swear there's a large part of me that thinks it may be my last.

It sucked. Really, really, really bad. Like I'd rather die of cancer bad. That is until I look at my kids. I've often used the expression that I would "cut off my right arm for my children". Trust me, doing chemo is the real life equivalent. But I don't know if I'm up for this. Even for them.

During the infusion their was a problem (but of course, nothing is simple) and I had to go across to the hospital to have a "port study" -- they thought perhaps my port was leaking. This would be very bad because the drug they were giving me can do alot of damage if it escapes the veins. But the port study showed no leaks so back to the infusion center I went.

I was told that typically nausea doesn't start for about 48-72 hours so we'd planned for Michael to go back to work and that way he would be home during the potentially worst part of it.

What's that they say about all the best laid plans?

When I got home I felt tired but otherwise fine...almost sent my mother home, but SOOOO glad I didn't. The vomiting began about 2 hours after I got home and continued, every ten minutes, for the next eight hours straight. We called the doctor for more anti-nausea meds...they were prescribed & given -- nothing. It finally got to a point where I was told that I would just have to ride it out and come back in the morning for IV fluids. Michael came home early and slept on the floor next to the sofa where I spent most of the night. My mother stayed in with the kids.

Today I have progressed slowly from all out retching to nauseous to queasy. I'm just so damned relieved to not be throwing up anymore I can't even begin to tell you. I went back to the infusion center and also got another injection, this one is to keep my white blood cell count up because I am doing dose dense chemo.

The bottom line is, across the board the general statistics are chemo only helps about 30% of people with breast cancer, even with all the individualized analysis of tumors, hormone receptor status and other various assessments...it still comes down to only helping about 30%. It also can cause irreversible damage in various ways, from congestive heart failure, neuropathy, even minimal brain damage.

I'm gambling with my life either way.

While I sat, sofa-bound, puking in a bowl and not caring whether I lived or died, I swore to everyone around me I would NEVER do this again. That's it, I'm done. I'm already a vegan health nut I'll just kick it up a few more notches, maybe even fly to Mexico and go to one of those alternative cancer treatment centers/spas...meanwhile let them rip out my ovaries and I'll start popping those estrogen blockers asap. The doctors at the NJ Cancer Institute as well as several others all said that in the end the most important thing I can do to keep the cancer at bay is to cut off it's estrogen supply...I'm lucky to be so highly hormone positive. Luck being relative.

Today, as I sit finally able to type without getting nauseous and I look at the pitifully concerned expression my husband wears on his face each time I catch him watching me...as my kids interrupt their all important playing to come over and give Mama a hug...right now I think that I will try another round...see if there is ANYTHING they can do to tweak my meds. Because I guess even with how awful this was (and I can't do it justice without being totally gross, trust me)...despite it all I'm too afraid NOT to do chemo.

Fear sits on both sides of me right now. It's not a good place to be.

I just don't know

I don’t know when I will be starting chemo. I see the doctor tomorrow.

I don’t know who to trust anymore when it comes to all these freak medical issues. I am tired of this, tired, tired, tired. I don’t know why it seems my body is falling apart piece by piece, right along with my life.

I don’t know what to write, what to blog about. I just don’t know what else to say. But I had to say something.

So this is all I have.

I'm still here.