Feeling lucky & saying no to chemo
Decision made. At 9:45PM I took my first 20mg of Tamoxifen, having spent the better part of the weekend prowling every corner of the Internet in hopes of finding someone to validate my decision, to tell me unequivocally that having weighed the relative merits of treatment with or without adjuvant chemotherapy, Tamoxifen would be enough. Enough for me not to die from cancer. My head is teeming with highly inventive usernames and passwords for me to hide behind so I can post anonymous questions for nameless experts on the Johns Hopkins Breast Cancer Center or loiter expectantly on online discussion boards. I have poked around the Stage II Breast Cancer forum of one such website, hoping a 48 year old woman with the exact same story as mine will raise her hand and let me copy her notes. When all of this began to feel overly clandestine, I threw caution to the wind and registered using my real name. Signing my name wasn’t the first-initial-last-name standard to which I am accustomed. An ironic pedigree, it included in the following order: date of diagnosis-type of cancer-size of tumor-stage-grade-node involvement-estrogen and progesterone positivity-HER2/neu status. As such, it brought to mind one of the more bookish teachers from my childhood who had what my parents described as a “a string of letters after her name.” I must confess, by this stage in “my journey,” I had not yet memorized the line and lineage of my particular cancer and had to resort to looking up the answers in my pathology report. For extra credit, I added my negative BRCA1 and BRCA2 results and the Oncotype DX number which had thrust me into the bowels of Google in the first place. Twenty-one. My “Recurrence Score.“
For the first time in my life, I was hoping for a zero on the test – zero chance of distant recurrence. Too much to hope for, I’m afraid, given what I am learning about breast cancer and the culture of low expectations in which it has languished. One only has to look at how far we haven’t come in figuring out what causes it. When the usually cheery nurse called to tell me that I am a “21,” she was matter of fact, informing me that I am in the “grey zone,” in “the intermediate group of ladies.” Sensing my disappointment, she sort of reassured me, “Doctor said 21 is a good number.” Pause. Doctor had also said I would probably not need chemotherapy.
Enter Greek chorus, stage left: ”But you never know … “
Still she wanted to send me to the MO, the medical oncologist. Previously, MO would connote a school’s Maintenance and Operations budget or, more poignantly, would bring to mind Former Secretary of State for Northern Ireland, Mo Mowlam, taken by a cancer she tried to hide from members of the tabloid press who, unwittingly, made fun of her appearance. The new MO in my life would probably – not definitely – not recommend adjuvant chemotherapy along with Tamoxifen. When I saw my surgeon, on Valentine’s Day, she reiterated that 21 was absolutely a “good number.” We looked at the charts and graphs on my Oncotype DX report, and I read the section which explained that in the Clinical Validation study which included 688 female patients with Stage 1 or II, Node Negative ER-Positive breast cancer who were treated with 5 years of Tamoxifen, those patients with a Recurrence Score of 21, just like me, had an Average Rate of Distant Recurrence of 13%. A light bulb went off when I realized that “distant” was not a euphemism for “far, far away,” like the “happy land” we sang about as children in Sunday School. No. “Distant” represented liver, bones, and lungs – distant places on my body where the cancer may reintroduce itself.
I nodded sagely as my brilliant surgeon showed me how the graphs flattened out, pointing out what I interpreted as a barely negligible benefit of adjuvant chemotherapy for “21s” who were also taking Tamoxifen. Still, she wanted the MO to confirm her assessment, reminding me she was “just the mechanic or the plumber,” not the expert. So another appointment was made.
Three days later, on a sunny Friday morning, I was waiting again in a windowless waiting room. In my entire life, I have never waited in such a room, at the intersection of disease and treatment. Every time the door opened, I saw one more reason to rage against cancer and its attendant therapies. How I ached for one woman in particular. Thin and stooped, she shuffled in, attached by tubes attached to a bag on the shoulder of a weary and worried spouse. Every single person in this room was shackled to some aspect of this disease. I wanted to flee.
Clearly, everyone there had been there before, well-versed in a drill that was foreign to me. They waited, their names were called, they disappeared with a nurse, and within a matter of moments it seemed, the appointment was over. How could an appointment be so brief, I wondered. Or had I lost all sense of time? Were these chemotherapy appointments? What exactly was chemotherapy? What did it entail? How could I rail against something about which I know so little?
When it was my turn to register as a new patient, the woman at the front desk greeted me wordlessly and instead took a digital picture of my confused face. Next, she asked for my insurance cards, one of which she dismissed as not being a medical insurance card, even though it most certainly was. Perturbed, I argued with her which forced her to send for reinforcements, including someone in scrubs who loudly proclaimed, “Well, it doesn’t look like a medical insurance card,” and while they passed my card around, shaking their heads and raising their eyes to the heavens, my mind raced, trying to calculate the damage done by cancer to the people within and beyond the walls of this room.
Soon enough, I was ushered into a small room, where I waited for the MO. Assertively, she bustled in, shook my hand, perused whatever was on her monitor, and made a comment about my “impressive” family medical history before telling me to undress from the waist up and that she would be back in to give me her recommendations. It was all so quick. I knew the waiting room was full of sick people who needed more attention than I did, so I felt guilty craving more quality time. Nonetheless, I was irritated that this oncologist, whose business card assured me that she was Board Certified in Haemotology and Oncology, had, within minutes, failed a fundamental requirement for a healthy doctor-patient relationship. She hadn’t asked me how I was doing today, how I was faring on my cancer journey thus far. In spite of being billed more than $80,000 by this point, it still hadn’t dawned on me that all these appointments, which required me to drive over hill and dale, were actually part and parcel of a service for which I am paying one way or another. Still polite and passive, I hadn’t yet learned what to do or say when confronted with an outward lack of compassion from a learned oncologist who may have been the best in the world in the treatment of tumors but, based on this brief interaction, fell short in the treatment of people.Specifically, the treatment of me.
She bustled back in, examined my reconstructed breast and the angry hip-to-hip scar. She asked if the surgeons had talked to me about the lesion on my liver. Oh, they hadn’t? Well, did I realize I had a 0.6mm lesion on my liver? No? Well, it’s probably nothing. They also didn’t tell me about the cyst on my kidney that’s ”definitely nothing.” So why exactly are we entertaining this discussion? I was beginning to wander off into a new land of ominous-sounding lesions and cysts when she directed me to sit up and get dressed. I obeyed. She disappeared without saying anything, then reappeared with her recommendation that four cycles of Third Generation Chemotherapy would be in order. What? She handed me a printout from Adjuvant Online, with “Shared Decision Making” emblazoned across the top of the page. Oh, the ironies just keep coming, and she explained to me, as though I were a recalcitrant first grader, that if there were 100 women in the room, 11 of them would be alive because they had taken Tamoxifen along with adjuvant chemotherapy. So would I be in the group of 11? Well, she couldn’t answer with surety. Could she talk to me about the quality of life for the 11 women (one of whom may or may not be me)? Well, she couldn’t tell me that either.
Without warning and shocking even myself, the words flew from my lips, “I am not doing chemotherapy.”
Without missing a beat and a swift acknowledgement that she respected my opinion, the MO smoothly transitioned into a lecture that included a litany of available options. I just couldn’t tell if they were available to me or if I should even be paying attention. In addition to describing Tamoxifen and its side effects, she also discussed oopherectomy (more new vocabulary), as well as a shot of something to “chemically castrate,” me (presumably Lupron). Chemical castration! I suppose I should be grateful that she sort of apologized for the barbaric language, but my mind was already wandering back to a History of Music class I had taken in 1981. I had learned all about the male castrati of the 1600s, fascinated by the fact that, because they had been castrated, only they could master the technically demanding coloratura of the day. Of course, I also reminded myself that this was a treatment recommended for pedophiles.
By the time MO was detailing the side effects of the Aromatase Inhibitors to be taken after two years of Tamoxifen, I was nodding like my daughter does when I ask if she has cleaned out the cat’s litter box. She handed me a piece of paper on which was printed a prescription for a year’s worth of Tamoxifen and then nine warm pages that explained all the side effects of the four cycles of TC – I had to wait for the tenth page because the printer had run out of paper, as it always does when you’re in a hurry. TC. Taxotere and Cytoxan for the uninitiated. As the printer spluttered out the information, she casually remarked that I could always call her assistant, if after reviewing said side effects, I changed my mind, but to bear in mind that I only had about a month-long window of opportunity. Kind of like the option to buy the extended warranty on a new dishwasher at Best Buy. Panicked, I glanced at page four and, of course, my eye landed on the list of mustard gas derivatives that included Cytoxan. What? Meanwhile, the MO was explaining that, to make all of this easier, they would install a port in me, but she didn’t explain what a port actually was and what would be made easier or if it would be easier for “them” or for me. Come to think of it, she never actually explained why chemotherapy would be of benefit to me. Me. And I wasn’t quick enough to demand an explanation. It was as if I had been struck dumb.
All of this is what led me, exhausted, to the online discussion boards, second-guessing myself. In other areas of my life, indecision and ambiguity abound. I always perform poorly on multiple choice tests and fail spectacularly when it comes to following directions to anywhere I haven’t been more than twenty times. I will fret over whether to turn left or right, then turn right and, after a while, look over my shoulder and realize I should have turned left. When my best friend, Amanda, and I go out shopping or to see a movie, we always have dinnerafterwards, because we both know I take a long time to order, agonizing over the same salad I always order, something completely different, or what the hapless waiter would order if he were me. But driving directions and menus are trifling compared to a Big Decision like choosing not to partake of chemotherapy. Surely this would be different. No. The stillness I had anticipated following the decision made, eludes me.
Not too long ago, an acquaintance told me, “Chemo is tough, but you are too.” I have tossed that around in my mind and come to the realization that I am not tough at all. I am worrying about having made a mistake rather than basking in favorable odds. In spite of knowing that, between them, three of the finest surgeons removed all the cancer that could be detected, and when I woke up almost 8 hours later, ensured I had a new breast; and, in spite of knowing I am alive and in a home that is drenched with sunlight in the middle of February, I am preoccupied by what comes to visit during those unguarded moments, troubled by the decision to dismiss chemotherapy. Was this a decision based on the Oncotype DX Recurrence Number or can it be attributed to some heightened intuition, some special gut instinct. Worse, did I make this decision because I was afraid to lose my hair, the hair on my head, that if it were to fall out, would expose me as sick and vulnerable and dependent?
My surgeon would later ask me if my experience with the MO was like being “on a human conveyer belt.” Yes. And so my committed and compassionate surgeon called me at home one night and stayed on the other end of the line until she was assured that I understood that it was important and the right thing for me to pursue a second opinion, a third opinion, a fourth if necessary. By the end of the next day, her assistant had scheduled an appointment with another oncologist.
To be continued.