Choices Part II

Next week, I’ll have my first mammogram since my surgeries, and visit with my breast surgeon at Mass General to review the results. The possibility of recurrence has begun to seep into the forefront of my consciousness from the back vaults of my memory bank where I have tried to keep the fear at bay these past months, the dark, deep wells of terror rising up bit by bit to turn my brightly-colored optimism into shades of gray. I tell myself, everything will be okay. I push the fear back inside, tune out the jagged voices, fill my belly with breath and exhale the fear, but then, soon, it’s back, and the cycle starts all over again.

I remind myself that I have choices in how I deal with my fear, that I don’t have to let it consume me or even make my decisions for me, that I can live with it in a way that does not compromise the enjoyment I get out of life, that I can make peace with it and find a place for it where it will not define me. Cancer can be a most insidious terrorist, hiding out in your hills, plotting your demise, letting you live your lovely life until one day unleashing a torrent of terror that obliterates everything you’ve known, up-ending your world, and unseating your most precious freedoms: to live without fear, to feel safe, to wake up each morning and go to sleep each night knowing that your dreams will not turn to dust, the stars will keep you in their sight, and there is ample time for you yet.

I have been slowly realizing that these past several months—of waiting for and receiving my breast cancer diagnosis, of having to make many critical decisions around breast surgeons and plastic surgeons, hospitals, procedures, surgeries, and reconstruction, treatment and treatment facilities—have been about a lot of things, including having choices. And throughout this whole experience, I have been acutely aware of the fact that I have had the freedom to choose my care, my course of treatment, my doctors, and that it hasn’t always been that way for the untold women who came before me. My grandmother went in to the hospital to have a lumpectomy, and came out with a mastectomy. And she was probably one of the lucky ones. My gratitude abounds for having those choices, and for the decisions I have made around them, but I can only imagine what this diagnosis must have meant ten, twenty, thirty years ago. There have been so many advances made in early detection and treatment strategies that women with breast cancer today have many more choices than those who came before us.



When I got the call about the iffy mammogram, I was instructed to call the hospital to set up retakes and an ultrasound. The first choice was easy: show up for the appointment. Face the horrible possibility that the something the radiologist spotted might be cancer. Doing nothing was never an option. When it was clear that this cloudy spiral of dense tissue was not going to go away, the second round, too, became clear, albeit terrifying: biopsy the bugger. But I had my options: go in for a surgical excision or try first to have a stereotactic biopsy. I was forewarned that the stereotactic biopsy, a procedure which involves lying on your side uncomfortably for nearly an hour with your girl hanging through a cut-out in the table where she is summarily squeezed, clamped, and filmed in successive and, in my case, excessive mammograms in an attempt to extract, with a long, sharp needle, a small sample from the suspicious breast tissue, might not work, given the location of my cancer and the small size of my breasts. Small? Me? But it was worth a try. After 45 minutes and 8 mammograms, I told them to cut it out, stop, leave me alone already, enough was enough. It seemed that the trio of torturers—the general surgeon, the radiologist, and the nurse—had known from the get-go that it wasn’t going to fly, and that they were making a go of it for me, but I couldn’t take anymore. My neck had been wrenched sufficiently to render it aching and sore, and my poor left girl had been squeezed, exposed to way too much radiation, and left for dead. We scheduled the surgery for the next morning.



It wasn’t until I had gone through the surgery that I realized why they had wanted me to at least attempt for a stereotactic biopsy: surgery was, of course, a much bigger deal. There was the pre-op routine, for starters, which I had been through just two weeks before, when I had had a small lipoma removed from the inside of my left knee, when doctors and nurses buzzed about me, asking the same questions again and again, taking my vitals, thumping and poking my veins, checking in, going over, making sure. This time, I was alone, turning the bold, jagged face of fear and anticipation over so many times that I had rubbed it down into a smooth wisp of a stone. And there was the painful, bizarre needle localization procedure that I had to deal with before the surgery itself. Already in my undignified Johnny, I was wheeled down to the mammogram floor, trying not to show too much skin (oh, the irony!) on the way as I passed the usual hospital traffic: visitors bearing gifts and flowers, patients wide-eyed and tremulous in fear, the shuffling feet of doctors and nurses in their OR scrubs, and the parade of technicians, maintenance workers, and volunteers marching by.



The nurses all recognized me from my knee surgery—weren’t you just in here?—and before being wheeled in to the OR, one in particular, a sweet older woman who had been incredibly nice to me, told me that she didn’t want to see me in there again. It was her way of telling me that she hoped I would be just fine, that the biopsy would yield the 80% odds-on favorite outcome, that there was no cancer, just calcifications, say, and that it had all been a bad dream.When I received the wrenching news that cancer had somehow entered my life, spilling its mess onto my lap, I suddenly inherited a crash course in all things breast cancer, and a cavalcade of decisions that marched about, blasting horns of self-doubt and blowing the fear out of my belly, unremittingly in my head. Of course, I had to wait for the final pathology, an excruciatingly long, drawn out journey through the darkest tunnel with terror as my only companion, before I knew the full scope of what my choices might look like.

In so many ways, I was lucky. Because my cancer was caught early, and was small and non-aggressive meant that I had more choices than someone with a more advanced, aggressive form of cancer. These days, doctors will do their best to save a woman’s breast, sometimes performing three or four breast-conserving lumpectomies in an attempt to get clear margins while preserving as much breast tissue as possible. I know several women who have gone this route, only to be faced with the stark realization that mastectomy remains the only option to get rid of all the cancer and gain clear margins on all sides. But because of the location of the cancer, and the fact that my breasts were small (well, they still are small, to be certain), mastectomy seemed the most logical choice: take the left girl, expunge the cancer, and grow a new girl.

But it was never as easy as that. Choices like that never are.

However light and breezy I can make it sound now, it was excruciating. I cried and cried over the thought of losing my breast. I was deeply depressed about having to cut off this metaphoric and literal connection to my children. And I was scared to the bone about the surgery itself, what might happen, what I might feel and look like afterwards. In the thick of it, I considered where to have the surgery, whatever it might be. I could stick with the local surgeon, or head to a breast cancer center at a major Boston hospital. I could stay close to home, or venture outside my comfort zone, where the quality of care, treatment, and facilities might be superior.

During this time, I was still having problems with my left knee, the knee that had started this ridiculous parade of surgeries back in January, with a 15 minute surgery to remove a small, benign lipoma. 15 minutes of general anesthesia and supposed simple surgery had left me without feeling on the left side and front of my knee (the lipoma had been removed from the inside of the knee). Plus, I was experiencing tingling in my hands and left foot. After my mammo retakes, I made my way into the surgeon’s office to ask him about it. I could see his hackles go up, his defensiveness begin to sharpen his tone, his posture. It’s nothing I did. I’m positive it has nothing to do with the surgery. And yet, I told him, my knee felt just fine before the surgery. I told him that I was due to have a biopsy the next day, that I really didn’t want to be worrying about my knee right now. I asked him what he thought was going on, if he was so sure that it had nothing at all to do with the surgery. Oh, why, it could be a lot of things, he said, like MS. MS? Gee, thanks, just what I need to worry about.

My primary care physician wanted me to see a neurologist, get the brain and spine MRIs done, figure out what the heck was going on. So, while waiting for some news, any news, from the surgeon about the biopsy results, I spent hours trying to lie still on the MRI table, listening to the insane noise that echoed throughout the chamber and hammered through to my bones, the voices of the technicians telling me that I was doing great, that this would be the last one, that, after four, I was done, finally.

On the Monday following my own Black Friday—the day I got my cancer diagnosis—I met with my primary care physician to try to sort everything out. I learned that my brain MRI showed some questionable white spots, that I should let the neurologist explain everything. What did that mean, exactly? White spots? Does that mean MS? I was spinning. My doctor offered me a prescription for anti-depressants. Given everything you’re dealing with, they might be a good idea. I had had one trippy, uncomfortable experience with anti-depressants, and I wasn’t eager to revisit it. I needed to feel grounded, to feel everything that was happening to me, and not convolute it into some bizarre head trap that didn’t feel like me. I took the prescription, filled it, but the small plastic bottle sat on the shelf, next to massive bottle of Vicodin that the knee surgeon had prescribed, and that I had not dipped into.

It was all I could do to make it through those days without losing my shit, skyrocketing out of control, and spontaneously combusting. That gyroscope of intense, freak out fear, shock and confusion churned and burned so fast and hot that it took everything I had to hone in on my center, take one thing at a time, and continue to make good choices.

I met with the neurologist, who spent over an hour and a half testing me for various disorders, coming to the conclusion that while I did not have MS, I did have some mild, fairly common neurological disorder that explained my tremor, unexplained sleep disturbances, my penchant for sleep walking as a child, and the odd way my eyes seemed to flutter to a close. Hmmm. The white patches on the MRI, it turned out, were tiny, insignificant, and I was much relieved to be able to put MS out of my mind. But the neurologist left me with something else to chew on: his theory that my overblown post-surgical sensory nerve trauma might indicate an early sign of Charcot Marie Tooth Disease, an often insidious degenerative condition that I later learned could quickly lay waste to one’s ambulatory strength and imprison one in a wheelchair. Lovely. He offered a prescription for sleeping pills, and I did the math. Pain meds + anti-depressants + sleeping pills = the Heath Ledger effect. No thanks, I told him. I’ll figure it out.

I decided to put it out of my head. I needed to focus on the cancer. I had so many decisions to make, so much to learn and process, that there wasn’t any room for anything else. I would deal with these pesky doctors later. I figured the knee issue would have to resolve itself, that I had other, more pressing things to think about, that I had to somehow let it go, trust that the phantom fear would loosen its stranglehold on me and fly away.

But strangely, while considering my next move in my ongoing breast cancer saga, the knee continued to plague me, with nerve pain that would come and go suddenly and unexpectedly, crackling bolts of lightning that shot through the cloudy numbness that felt like water on the knee and made kneeling unbearable. Soon, I noticed a clicking sound and sensation on the outside of the knee that creaked like a rusty hinge whenever I extended my foot. My knee woke me up at night, screaming at me. Ironically, and conversely, the breast cancer was quiet. Deathly quiet. I felt no pain, no sickness, no weakness or fatigue; there was no discernable lump in my breast where the cancer was apparently lurking, furtively turning all those good citizen cells into miscreants; there was nothing I could feel that indicated I was sick at all, save for the dizzying, near blinding spells of exhaustion, brought on by the sheer weight of the rubberband ball of fear and indecision that stretched me, tangled and tight, and the sinking knowledge that everything was about to change, that there would be no going back.

So, I deliberated the decision as I do all decisions, weighing each side over and over again until one seemed a clear frontrunner. At odds, to dispense with the breast-conserving niceties, throw caution to the wind and go right for the gullet instead, have the mastectomy, and clear out the cancer on this, the second try, and be done with it, or, try to save my small, waning gibbous moonbeam of a breast, and risk not getting clear margins, again, and have to have a mastectomy anyway, after already dealing with the effects of two surgeries. To be or not to be, that was the question. As well, I had to make another choice: to have it all done locally, at our less than cutting edge hospital, where the nurses knew me and where I had already established a good relationship with the surgeon, or take the advice of trusted friends and fly the coop for greener skies, where I would be treated by the best breast docs on the planet.

Dr. Fox, the local surgeon, was excellent, but my experience with the knee guy, who had sportingly seeded my already overflowing head and heart with the idea that in addition to breast cancer, I just might be dealing with MS, too, left me weary and leery of returning to the site of mysterious complications.

Oddly enough, it seems like a no-brainer now, but it wasn’t until I had met with the breast surgeon at Mass General Hospital, Dr. Michele Specht, that I knew for certain that I wanted to have my treatment done at MGH, and that I wanted her to take care of me, perform a mastectomy on my left side, and get rid of the cancer. I also told her about the neurologist’s theory, just in case I had to worry about future surgeries upsetting my already broken down sensory nervous system. Charcot Marie Tooth disease? No, I’m pretty sure you don’t have that.

There have been additional decisions I've had to make: to have one side done or both, to go bigger or stay the same size, to get a nipple or not. And there will be more in the future. Each and every days churns out an endless succession of choices, some already made for us, some slightly out of reach, some slipping away as missed opportunities. It turns out that those early choices I made were good ones (Knock on wood). I’ve healed well, suffered no complications from the surgeries, and have continued to feel really good and clear about the people I chose to excise the cancer, rebuild my breast, body, and spirit, and help me best take care of myself as I deal with the obnoxious side effects of the Tamoxifen, the bewildering world of cancer prevention, and the lingering fear of recurrence.

But things can change on a dime, as I've learned, because change is what fuels the insistence that life be lived, so I revisit my gratitude as often as I can, tuck the fear back inside, and see that things are okay, that next week's appointment with the breast surgeon will go just fine, and my six month check ups herewith. It's really the only thing I can do: trust in my choices, without any looking back, so that I can live in the here and now, and know that those three little birds upon my doorstep wouldn't lead me astray.

But I wonder: what do people do who do not have the same resources that I do? The friends who can summon references and help and bring me to the best? The health insurance that assigns me a case worker who checks in every now and then just to make sure everything is okay? The family members, friends, and neighbors who have supported me throughout my darkest days? The wherewithal to not take things for granted, to do the research myself, to not be afraid of doctors, to advocate for the best care for myself, to push for choices, and not be at the mercy of any system, but rather feel empowered to blaze my own trail through this process of self-discovery and healing? What do people do without all of that? Their road map must be considerably smaller, and simpler. And maybe, the road ends rather abruptly for them.

Furthermore, who makes the call? Who is controlling the research money? Who gets to decide if we live or die, or live or die with dignity?

A woman’s life is rife with heartache and joy; I would like to think that every woman would have the freedom of choice that I’ve had, and the resources to make good choices within that structure of responsibility. But I know it’s not so. The Bush administration wants to redefine birth control as a form of abortion, the McCain/Palin ticket wants to make all forms of abortion illegal, even in the case of incest or rape, and in many places in the world, women do not have access to birth control or safe, legal abortions, basic education and health care, or protection from the unimaginable horrors of genocidal gang-rape, genital mutilation, and worse. It’s hard to think about what some women face, and the resiliency and strength their situations demand. My own experience with breast cancer pales with what many women have to deal with, and has ushered in a whole new perspective on just how precious our good health, relative safety, and hard-fought freedoms—to choose for ourselves who speaks for us and makes decisions in our name, who does what to our bodies, and how to best live with our choices—really are.