Sunday, March 24, 2013

Five Years

March 24. It's been five years to the day since the good doctors cut out my cancer, put my left girl into an early grave, and started to grow a new girl in her place. As a cancer survivor, you hear a lot about the "5-year mark," the supposed milestone that everyone wants to reach: the rate of recurrence drops significantly, you can rest easy, you're golden. Yeah, well, I don't believe it.

Just like I don't really believe spring is ever going to come. But it will.

The vernal equinox came and went four days ago, ushering in a snow storm, colder temperatures and a wind that cut its teeth back in January. I've been waiting for the red-winged blackbird to return, the crocuses to burst through the soft snow, the snow to melt in circles around the bases of the trees, fill the streams with a throaty roar, and then, just go. But, no. Not yet anyway. Winter is hanging on. Sometimes, it just happens that way.

For now, the sap is flowing, and that will have to be enough. Isn't that how it works, after all?

Statistically, it seems good news abounds about breast cancer, its treatment and rates of recovery and survival. And yet, we all have friends and loved ones whose stories run against the tide and say otherwise: cancer is a tricky, sneaky little devil of a disease, after all, and why we'd like to claim full understanding of how it works its black magic, we can't possibly make sense of why more and more young women are being diagnosed, why metastatically, it remains insidious and powerfully destructive, and why the rate of occurrence is so staggeringly high across the board. Cancer kills, and it does so indiscriminately. There is little rhyme or reason to it. Kind of like our weather these days.

NED, or No Evidence of Disease, is what the folks in the medical-lingo-know call this state of being "cancer-free." Given all the different types of breast cancer there are, NED and all its possible rates of recurrence after the five year mark, are achingly complicated.

Since my surgeries back in 2008, I've seen my breast surgeon and oncologist on an alternating six-month schedule. They've been upbeat, brisk, even, suggesting that they have patients who need their time and attention much more than I do. While my time with my oncologist typically feels unrushed, sequestered, even, my visits with my breast surgeon have often felt more like a speed-screening session, five minutes of catching up over a quick breast exam, any changes?, an exchange of smiles, everything is great, a send-off with some sense of security in this mad world. The mammogram--digital now, thanks to advances made at Mass General with the 3D imaging called breast tomosynthesis--takes another five minutes. A few quick squeezes of my left girl in the pancake-machine, hold your breath, the inevitable kink in my neck, the bruised rib that mistakenly gets claimed as breast tissue, thin, flat-breasted women are indeed a special challenge, and you're so tall!, and it's done. The visits, however quick, seem to swell into long, drawn-out days. The anxiety that maybe this time they'll find something starts to creep in days, sometimes weeks, before, and there's the long drive into Boston, the red line to Charles/MGH, the precipitous wait in my johnny gown, to fill out, again, the electronic questionnaire (the question about smoking still stumps me: what if I never bought my own pack of cigarettes? does that count?), simmer in my worry, fashion magazines on my lap, and then, the pancake-session, and then, again, another wait, for the results, that all-too-familiar dread rising to fill my hollows with its stink. 

I have sought reassurance from my docs, but clearly, they have patients who need it more than I do. After all, I've been healthy, I'm walking, I'm strong, a model of survivorhood on the outside, right? Eh. My reassurance has come mostly in the form of having screenings done--first every six months, now once a year--and receiving good test results (read: your mammogram showed nothing new that looks alarming, abnormal, or cancerish. your right breast is still dense and cystic and a little wonky, but it's not necessarily wonkier than it was the last time, so all's good). When I graduated to annual screenings, it freaked me out a bit. I had come to depend on getting that reassurance every six months that I did not have cancer. The cancer is still gone. It has not come back. Your right girl is healthy, cancer-free. It gave me a new lease on life, every time. To go a full year in between screenings felt like torture, the dread and fear rising and swelling and stinking up my better sense, but because it had been presented as something to be proud of, I felt as if I was obligated to make the most of it: suck it up, cupcake. this is how it is. 

What, exactly, happens at the five-year-mark? What, exactly, was I expecting? I see my oncologist sometime this spring. I don't remember when. I am still taking my Tamoxifen. I don't intend to re-fill the bottle that I have but rather, let it run out. Good riddance, right? Five years of Tamoxifen has been enough. Or has it?

As much as I am looking forward to letting my body recover from some of the side effects that the Tamoxifen has wrought--hot flashes, especially early on; severe leg cramps; erratic, unreliable periods; brain fog; yadda yadda--I wonder (ok, I worry) about how else my body might "recover" after I stop taking Tamoxifen. I know it is protective. I know it is an amazing drug. Will the five years offer enough protection as I head into the six year mark? The ten? The twenty? What happens now?

I took a walk today. It is good tonic for me in every way, to get out in the fresh air and sunshine, take in a changing landscape (though, I would argue that it is not quite changing quickly enough), take notice of the natural world that seems, at times, so distant, given how freakin' busy I've become, fill my lungs, get the heart going, swing my arms, relax my addled tech-neck, let my faraway eyes land on something other than a screen for awhile, clear my musty head, and hope that my dog's unabashed joy for such serendipitous walks is contagious, even if it just a bit.

Whatever happens, I suppose, I'll walk on. After all, it has become my religion, my good tonic, my reassurance. Reassurance comes from living my life the way I see fit, from taking care of myself, for making time for those regular cathartic walks in nature, leaving behind the overload of responsibilities every now and again, taking some chances on something, anything, and write, write it all down, here I am. This has been much, much harder to do than I expected, more difficult to sustain. It takes time and love and acceptance and a field of fucking daisies, and sometimes, it's just not there. It's been a battle, most days, to take care of myself, to believe that I am worthy of such care, of a love that comes from the ground up, that seeps into every fiber of my being, a sinewy strength to carry me every step of the way. The shadows are with me, always. But that's not where I want to live. 

After all, I should never have gotten cancer in the first place. There is no reassurance in statistics for me. I don't feel reassured by having hit my 5-year mark. Happy, yes, but reassured that it's all smooth sailing from here? No.

"My oncologist tells me that the longest he has personally seen a woman go before a breast cancer recurrence is 21 years.  Using five years to measure success in the fight against a slow growing cancer may be giving us a false picture of progress." ~ Phyllis Johnson, Health Central.  

My cancer was Estrogen Receptor +, or ER+. There's a lot we don't know about this particular kind of cancer, but I suspect it is in cahoots with all the endocrine disruptors in our environment, working as a tag team of sorts to bring the house down. Can we truly get away from it --the BPA in our plastic, the pesticides in our food, the hidden chemicals in our day to day? And what of the sedentary-electronic disease that has gradually taken hold of so many of us? What will become of our collective nature-deprived spirit, overloaded by information, overwhelmed by social media, desperate for a real connection? How does it all factor in? I believe all the toxicity in our environment plays a giant role, interacting with our particular brand of genetic and emotional vulnerabilities to work that black magic, a wretched malady, a special kind of malaise. Just exactly what is the disease? And what is the cure? 

There are no formulas, despite our desire to find reassurance in them. Shit happens. It just does. You can get cancer even though you were in a "low-risk" group. You can get hit by a car and find yourself in a wheelchair for the rest of your life. Or you might die. I won't even go into all the freak things that can happen. We could all get hit by a meteor, or the Big One. The cancer could come back. Or a new cancer could appear. Or MS. Early Parkinson's. The Plague. Whatever. Anything is possible. The good and the bad and everything in between. We all know that.

ER+ breast cancers are no exception. I remember when I got my pathology report that having ER+ breast cancer was considered the "good kind" of breast cancer to get. Oh, the irony. The thing about ER+ breast cancer, is that it can recur at any time after five years. And I wonder: what happens when we go off the protective Tamoxifen? Does it have a lasting effect? Is it enough? Is there something else (flax seed?) that does what it does without the side effects, and that can be taken indefinitely? What are those cancer cells doing now? Lying in wait? And what will they be doing once the estrogen blockade wears off? Revert to out-of-control party mode? Hoping they've learned their lesson. Don't mess with me. I'll kick your ass if you come back. And I mean it.

 I counted on not getting cancer, but I got it. The only thing I can count on is the unpredictability of life, and because of that, I have to live each day as if it were a milestone. To open myself to the gratitude that springs eternal in each and every step, that warms these cold, early spring days, and that offers reassurance that whatever happens, I will have lived each of my days... 

"So, not to be philosophical or anything, but I think every year is a milestone. Two years, 4 years, 5 years, 7 years...if we have invasive ER+ breast cancer, we can't ever really be considered "cured," But every year is, well, ...one more year." ~ Otter 

Five years = five years. 1, 2, 3, 4, 5. A handful. I'll take each and every one of them. And many more, too, please, if I may. Spring will come, but for now, I'll walk through the last remnants of winter's last gasp and enjoy the expansive light and growing warmth, the treble and touch of every step a prayer for many more years to come. I'll celebrate these five years and continue to try to find the nuggets of joy in each and every day. 

"There are different goalposts of certainty. We could be killed by a meteor, but we don't count on that. Some us (specifically me) need more help with dealing with uncertainty than others. But we can only take care of ourselves the best we can, and try to live our lives the best we can." ~ Leaf

Amen to that.








4 comments:

Chapin Kaynor said...

Thanks for the update, Liz. You go girl! (In every sense of the word.)
You set an example for all of us to take what comes and not be overly optimistic or pessimistic, but to look reality in the face and make our life decisions with as much knowledge as is available. And... to not be afraid to share. Experiences are universal even though our individual journeys are unique. Thanks!

Anonymous said...

Nice piece Liz!
Mel

zilekulmod productions said...

Thanks, Chape and Mel.

Chapin, I so appreciate your perspective, and support. Miss you, love you. Thinking tonight of Molly. <3

Cameron VSJ said...

Hi,

I have a quick question about your blog, would you mind emailing me when you get a chance?

Thanks,

Cameron

cameronvsj(at)gmail.com