underneath

what sleeps in your heart,

is the truth of it

curled up like a cat,

soft and purring

but indifferent

 

 

what sleeps in your heart

could it be that trapped voice,

silenced

like one drowning

under ice

who sees the surface

but is unable to break through,

mouth full of water

on the sharp thin verge of surrender

to the overwhelming

weight of cold 

what sleeps in your heart

is who you really are

and if you don’t see that

you may sink to the bottom

alone

and never wake up

 

 

 

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. 

thoughts, one month later

a pressure cooker

was used as an explosive device

this cooking pot

meant

for the creation of nourishment

perverted

to butcher an innocent crowd

 

once a harmless vessel

now filled to the brim

with agony

and simmering hate

to be doled out with terror

 

what kind of hunger

drives someone to invent

such a recipe?

 

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.

Towering Inferno

When I was in my early twenties the apartment building I was living in caught on fire in the middle of the night. I was able to get out unscathed, but had some scary moments during my escape. Waking up suddenly from a sound sleep only to see flames licking at your windows and thick columns of black smoke coming up thru the heating registers in the floor is a frightening experience, to say the least. I remember that everything seemed to move in slow motion and all the while I kept thinking, “This can’t be happening” – tho clearly it was. Even afterwards as I stood outside in the street and watched the firefighters try to control the 4-alarm blaze I kept having this feeling of reality being suspended; as if what I was witnessing wasn’t real.

Last year after I found the lumps in my breast it took several weeks to get a diagnosis. During most of that time I vacillated between thinking it would be nothing and fearing the worst. But even when I thought the news might be bad there was a significant part of my brain that reacted just like it did watching those flames burn my home…feeling like it couldn’t be real. It just couldn’t be.

But it was.

Now I’m waiting to find out if the pulmonary nodules in my lungs have grown…if the breast cancer has indeed spread. Perhaps as testament to either the power of hope or denial, I swing like a pendulum, back and forth, as to which way the outcome will go. On one level it’s hard to imagine more bad news coming my way…I mean really, enough is enough already, right? And yet on another level it’s hard to ignore the reality. Once your innocence is shattered it’s not as easy to maintain blind faith. I now know all too well that worst-case scenarios do happen. Buildings burn down. People get sick and sometimes cancer wins.

So I’m left wondering, am I merely standing here in a haze of disbelief watching the flames prepare to devour what’s left of my life, or do I get to escape the blaze again and regain some smidgen of a fundamental sense that there is goodness left for me in this world.

Oh, and let us not forget the third option…that while the nodules might not be a fast growing metastasis, they do end up still being there, same as before…their presence meaning I have yet more waiting to do before finally knowing with some degree of certainty if they are malignant or not…sort of like living in my own little corner of Purgatory rather than immediately being thrown into the definitive inferno much further south.

Meanwhile, this is me, still waiting…till next time.

Call waiting

(This does have a happy ending)

When I went in for a retest after a bad pap smear my doctor recommended I have a vaginal ultrasound and some blood work since having breast cancer puts me at higher risk for various reproductive cancers. The u/s tech said that unofficially everything looked fine and I was relieved.

I was told to make an appointment to get all the official results from the doctor in person, but if everything was fine I’d get a call before that instead, in which case I was supposed to cancel the unneeded appointment. So I made what I call the “in case of bad news appointment” but promptly put it out of my head. The second pap smear had come back clear and since the tech said the vag u/s looked good (and since I’ve got lung nodules to worry about) the whole thing slipped my mind.

Until yesterday.

Yesterday I got a call to confirm my “in case of bad news appointment”. My stomach dropped and I thought I was going to faint. I asked the woman who phoned if the doctor was there, I needed to speak to him. But he wasn’t in. So I asked for another doctor – any doctor. By this time I was crying. I told her I am a breast cancer patient and I know what needing this appointment really meant, that the news was bad. I begged her to please find me someone to talk to and get the results from by phone. She tried, I could hear the compassion in her voice – but there was no one there that was authorized to give, and I quote, “those kind of results” by phone.

I was supposed to go in today, but I had that CT scan for lung metastasis scheduled. The gynecologist and imaging place are too far from each other to go to both in the same day. Instead I was going to have to receive a call from the gynecologist on my cell, or wait the weekend for Monday. Neither choice was good, but I chose to get a cell phone call. Waiting an entire weekend was NOT an option.

After hanging up I sat in this house alone with my kids for the next ten minutes just weeping uncontrolably. After crying to Michael and freaking him out at work I called my mother, by that time, hysterical. She was outraged at how this was being handled. I felt that way too but was too upset to focus on that part of it. Mom asked me if she could call the doctor's office and try again to get the results. At almost 47 years of age I did the only thing I was capable of doing at that moment – I decided to go ahead and sic my 70-something mother on them. Apparently she raised holy Hell because within minutes the entire situation was resolved.

It was a mistake.

W.T.F?????

My ultrasound was completely normal. Completely. Normal. So was the blood work. It was, in a sense, a scheduling error. I was supposed to receive the “it’s nothing call” but mistakenly didn’t. So they were just calling to confirm the office appointment by default. The office manager phoned me to apologize. While I could have given her a piece of my mind instead I gave her a piece of my heart…I tearfully, VERY tearfully told her what I had just gone thru, that my young children had to see their mother become unglued yet again for nothing, my entire family was to be frightened yet again, for absolutely nothing. I said I don’t ever want this to happen to another woman. She promised me the system would be addressed.

What I went thru was excruciating, but in reality it lasted less than an hour. However in that hour I sure had time enough to consider many of the worst case scenarios...and now that I’ve had breast cancer, trust me, I have a bird’s eye view of what those kind of scenarios really look like, up nice and close.

I said this had a happy ending and it does, truly, for the most part. While at the moment I'm still reeling I am also hugely grateful beyond measure that this turned out to be a big fat nothing. The word relief doesn't begin to cover it. But sadly, happy endings aren’t quite what they used to be either. I'm still waiting for results next week about my lung scan. It seems forever more my happy endings will be diminished by the reality of just how temporary happiness can be, how easily it can disappear. All it takes sometime is a phone call.

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…

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.

Just do it

I died once. Seriously. I took what was (almost) my last breath on the evening of August 5th, 2001. For real.

After being hospitalized for a battle with pneumonia while seven months pregnant with Megan, my blood pressure suddenly spiked. I slipped from pre-eclampsia to full tilt eclampsia and before they took Megan via emergency c-section I went into convulsions.

Finally, while in recovery with my (thankfully) healthy baby safely in the regular nursery, Michael watched as I struggled to breathe. And then there was that fateful, final breath as I coded. Right in front of him.

Needless to say, I'm still here, so there's a happy ending. But it was a long time coming. My breathing remained compromised and my blood pressure stayed high even on medication for months. Two weeks after that event I developed the addition of excruciating gallstones and was at constant risk for pancreatitus. But no surgeon wanted to touch me to remove my gallbladder -- all were afraid I wouldn't live thru even a laproscopic procedure. No one thought I would be able to care for my child. I did tho, thru sheer will, determination and pure love.

The saga of how I went from that dying woman to relative health (if you don't count breast cancer) is a long one, destined for another time. What I am writing about today is what if feels like to die. It's an uncomfortable thought for many, but I want to share my experience.

My eyes were closed and I was unable to open them, tho I didn't try very hard. Still, I remember taking that last breath. I remember it very clearly. I had no awareness that the surgery was over. For all I knew I was still under the anesthesia or just waking up, it made no difference to me. After every thing I had been thru to conceive this precious child (a saga in and of itself) in my unconscious state I couldn't think of her at all.

Instead I was completely absorbed with the process of breathing. It was the most difficult task I had ever experienced. Each breath was a struggle, and it had been for weeks. But now it was harder than ever before. I was trying with all my might to remain calm, not to panic. Like someone trying to tread water I knew that if I panicked I would drown, I would not be able to maintain my breathing. And as suddenly as that realization hit me, an inner voice said, "Just let go. You can stop now. You don't have to do this anymore, it's okay."

And so I stopped. I just simply stopped struggling, stopped breathing. A feeling of peace came over me, a sense of calm and relief the likes of which I have never known. I was almost thrilled that it was that easy. So much fighting and struggling and all I had to do was let go.

I don't remember having a choice about living or dying, just the feeling of falling and the sound of someone screaming at me, "come back, come back, come back!" After that, my next memory is waking up later in the ICU and trying to find out about my baby. It was a long, painful night until the next day when I could finally hold my precious little girl. That memory too is powerful, in fact, more powerful than life or death. It was only the horror that I could have left her behind that made me glad to be back in my suffering body again, more than glad, I was elated...and grateful.

I carried away many insights from that trauma, some still reveal themselves to me now, nearly 8 years later. I consider my daughter's birthday my re-birthday because it was the beginning of a journey to health and a new life. You don't realize how precious something is, sometimes, until you almost lose it.

In a literal sense I found out death itself is nothing to fear. True, the time leading up to it may be more horrendous than anyone can imagine if you suffer from prolonged illlness, but the end part is simple, peaceful and soothing. I find that to be a great comfort. Especially now as I face an illness that could be what I eventually die from, tho I am as determined to avoid that fate now as I was to live once I came back from the dead on that August day.

I also can't help but think in metaphorical terms and find a life lesson in the symbolism. I had struggled alot in my life, I had railed against inevitabilities and prior traumas, held on tightly to my many wounds. It had left me battle scarred and more weary than I can describe. I needed to just let go, but somehow I couldn't. Over the first years of Megan's life as I dealt with recovery and motherhood I realized letting go is easier than we think. It really comes down to an infamous cliche of three little words: Just do it. Nothing is so important that it can't be let go if need be.

Oh, except life itself. That's worth the struggle at all costs to the bitter end. But when that end naturally comes, letting go of even that can be simple, gentle and freeing.

I will not go gentle into that good night, but when the night is over, many, many healthy years from now, there is peace waiting for me...for us all.

Trust me, I've been there, done that.