From Both Sides
by Ellen Weisberg
Table of Contents|
parts: 1, 2, 3, 4
I was scheduled to meet next with a surgeon through Harvard Vanguard. He had dark features and an accent I couldn’t place and was a hell of a nice guy. Despite claiming to be suffering from a migraine, he smiled and was pleasant and guaranteed me another fifty years of life, although he said he couldn’t promise me more than that. He told me that I had what he referred to as the “garden variety type of breast cancer.”
Estrogen-receptor and progesterone-receptor rich, hormone-responsive, her2 negative. I knew the phrasing was meant to be heartening, but it was not by any stretch of the imagination the kind of fruits and vegetables I’d ever have selected to be growing in my backyard.
He explained the basics of breast cancer and how it makes a pit stop in sentinel lymph nodes before characteristically carrying on its mission elsewhere in the body. The sentinel lymph nodes would be removed and tested for the presence of cancer at the time of surgery.
He had suggested genetic testing to see if I was positive for the BRCA gene, which would change the course of treatment as BRCA positivity carries a very high risk of ovarian and breast cancer and double mastectomy and removal of the ovaries would be strongly encouraged. However, he suggested I get an MRI to examine the lymph nodes and get a better idea of how localized the tumor was. He felt underneath my arms and said he didn’t feel any enlarged lymph nodes.
I had been encouraged by some friends and family to get treatment at the cancer hospital I worked at in Boston, mainly because of the convenience of being able to transition easily from work to appointments. The time had come for me to take my collaborator from the tiny paper-strewn office up on his offer and accept the fact that I was now eligible to be a cancer patient at the hospital where I’d studiously and mechanically manipulated the peripheral blood and bone marrow cells of leukemia patients for over two decades.
I felt a bit deceptive sitting in this kind surgeon’s office and listening as he pushed through the discomfort of his migraine and continued discussing plans for my treatment. Luckily he was the one, as opposed to me, who brought up the fact that often patients will opt to get a second opinion as well as treatment in Boston. He said that I could do the same. However, he insisted, I would be told the exact same thing he was telling me. I sheepishly admitted that I was considering treatment where I worked, but only because of the convenience of it. He seemed to understand.
Before leaving the building, I told my husband I wanted to see Lisa, the nurse/receptionist, in radiology. Another nurse at the main desk tracked her down for me, and when she saw me she immediately motioned for me to follow her through the door behind the front desk for privacy. I told her about my diagnosis, and she thanked me for letting her know, claiming that nurses are forbidden to follow up on certain patients on their own. She gave me some words of encouragement, and then she hugged me. She was a stranger who helped me more than she would ever know, a stranger who I would likely never see again, but someone I would never forget.
* * *
The real fun began at the Dana-Farber Cancer Institute, on the ninth floor of a building adjacent to the facility where I had been doing my leukemia research. My first meeting was with a red-haired oncologist whose face was familiar to me, likely from seeing articles written about her many achievements that were published in the hospital’s monthly newsletter.
She was accompanied by a very young-looking, dark-haired male assistant, a medical fellow. He was given the privilege of watching all of the color drain from my face as the oncologist said “Wait, hold on... What’s this?” while digging her fingers painfully deeply into my right armpit.
It was my second time lying on my back on the examining table like a slab of meat being tenderized. The medical fellow had fished around, as well, only moments earlier, and like the kind surgeon who had initially seen me and would never see me again, he didn’t feel anything enlarged or otherwise out of the ordinary.
I slowly sat up after the last of the digging into my armpit was over and pulled the rose-colored johnny back over my shoulder. My eyes followed the oncologist as she took a few steps away from the examining table.
“I’m sorry.” Her eyes locked with mine. “I have to tell you,” she said with a shrug, as though she felt some kind of justification for giving it to me straight was warranted.
It was not a good day for me to be receiving news. The oncologist explained to me that, in addition to having at least one lymph node suspiciously enlarged and possibly positive for the presence of cancer, the estimated size of the lump in my breast was such that a simple, tissue-conserving lumpectomy would not be possible. She was pretty confident that the surgeon, whom I was scheduled to meet with the following day, would be in favor of shrinking the tumor first with medicine and then performing a much simpler, less invasive surgery.
One option offered to me was enrolling in a clinical trial and being simultaneously treated with Lupron, which shuts off estrogen production from the ovaries, and tamoxifen, which blocks estrogen from acting on estrogen receptors. Both would be recommended to me as I was premenopausal at the time of diagnosis and shutting down estrogen production and blocking estrogen activity would be expected to help starve my hormone-responsive cancer and prevent it from growing.
Depending on which arm of the study I would be randomly selected for, it was possible that I would also receive a third drug called palbociclib, which blocks a protein involved in cell division and was already FDA-approved for metastatic breast cancer in post-menopausal women.
There was a little naive fantasy that had been incubating in my mind, in which the cancer would be plucked out of me, lickety split, and I would be on my merry way with life resuming as I once knew it and all would be well once again in my world. My reality was suddenly looking like I would be walking around for six months with a cancerous mass in my right breast that would hopefully diminish in size with daily consumption of tamoxifen and palbociclib tablets and a once a month shot in the butt with Lupron, followed by surgery and radiation and a big question mark as to whether there would be additional treatments, including chemotherapy.
Alas, this nightmare was not going to go away anytime soon.
The surgeon met with me briefly. He was mild-mannered with big brown eyes and a gentle smile. I heard a chorus of angels singing and basked happily in a glow of light emanating from his head as he reassured me that, in contrast to what the oncologist believed, he didn’t see anything in the lymph node realm that looked suspicious, according to my scans, and that it was common for there to be reactionary enlargement of the lymph nodes following a biopsy.
Ah hah! I thought. Oncologist wrong. Surgeon right. I silently nodded in agreement with my overly simplistic, black-and-white thinking. Or, more accurately, I silently nodded in agreement with my overly simplistic wishful thinking. Rational thought barged its way in just then, and reminded me that just because I wanted something to be a certain way didn’t mean it really was that way, and of the two opposing views one was correct, and only more tests would eventually reveal the truth.
The surgeon gave me more or less the same breast-cancer 101 refresher course that the first surgeon had given me. Knowing the oncologist had informed me about the clinical trial the day before, and perhaps to confuse me more and make it impossible for me to ever reach a decision as to what to do, he explained that studies suggested life expectancy was the same regardless of whether pre-op drug treatment was done first or surgery was done first. He said that he could perform the surgery at any time but, considering the size of the tumor, it would be aesthetically challenging.
The part of me that just wanted the cancer removed from my body took over then and I found myself saying, “I really don’t care about things like that, what it’ll look like. It’s not like I’m a Playboy Bunny or member of a nudist colony.”
His response was, with what I was realizing was his trademark, kind smile, “Then I’ll care about that for you.”
* * *
Despite having made the choice to stay in school through my mid-20’s, I always hated tests. I never minded studying for them, and even for the most part tolerated taking them, but I had a really strong distaste for the piercing anxiety that always came with finding out how well or poorly I had done on them.
The first stretch of several weeks post-diagnosis were riddled with tests, carrying with them the same heart-thumping anticipation I used to experience in my school days. Except there were no “A’s”, “B’s”, or “C’s” waiting for me at the end of this round of exams. And this, frankly, made me wistful for my old test-taking days.
The very first on the list of scheduled examinations I had to get was genetic testing, to determine if I had the BRCA gene, or any other known familial cancer-causing gene that might shed some light on what I had as well as what I might be at increased risk of getting in the future.
In response to the geneticist’s request for me to allow her to draw blood from my arm for this, I asked if there was another less invasive option, like a saliva swab or something. I had no idea at the time how numb and desensitized I would become to the fear of having needles pierce my skin and things being injected into me or sucked out of me, as I slipped into the role of human pin cushion for the next twelve months.
But that day, the geneticist humored me, despite claiming she had never before used the plastic collection tube that I squeezed a Q-tip into over and over again and that had been repeatedly pressed against my gums. Amazingly and disgustingly, the cotton captured enough saliva from my mouth to fill up two tubes and bring me closer to discovering the truth about my gene pool.
An e-mail from the geneticist delivered the good news that I was BRCA negative and the even better news that I was negative for everything else on the list of unfriendly genes that I was being tested for. There was an article that I’d read recently in mainstream news about 72 new genetic mutations linked to breast cancer that had been discovered. The fact that I shared with my mother the same disease in the same subcategory, and so many cousins on my father’s side were breast cancer survivors, still seemed to me to smack of something that might be inherited, possibly falling into the as-of-yet undiscovered subset of genes behaving badly.
But the culprit similarly could be a shared penchant for artificially colored red, yellow and blue dye-laden rainbow ice cream cakes decorated with maraschino cherries, or hanging out too close to the microwave while waiting for hotdogs to heat up, or even just eating the hotdogs themselves. As it was impossible to say with any confidence what the real root of all evils was for me and my family, as well as whether it was one root or many roots and if the roots were inside or outside the body, I took solace in the fact that the genetic testing I had was negative for the list of aberrant genes I had been tested for, including BRCA.
It was simply one less thing that I had to worry about.
* * *
The next test on my list was magnetic resonance imaging (or MRI), which was to be focused on my chest and used to reveal, as the very first surgeon I’d met with had explained, how localized the tumor was in the right breast. In retrospect, I suppose my fear of the MRI illuminating disseminated cancer in my chest like a Light Bright toy was a little irrational. But the cancer diagnosis in and of itself was frankly enough to put my mind in a very dark place. It was this pessimism that I found myself to be continually working against.
An IV was put into my hand before the MRI for contrast dye to be infused. There was something both perverse and invigorating about visiting my lab right after this and finishing an experiment in this condition. It was a multi-tasking of sorts, I supposed, in an unsettling, disturbing kind of way.
I carefully timed my experiment to finish with just enough minutes left over to get to the MRI on time. As I funneled through the machine, face down, the image of a person being buried alive came to mind. I was asked if I wanted music to play through the headphones they had placed on me. I said “yes” and when asked what kind of music I wanted I said “classic rock.” I could just barely hear probably the worst three or four songs ever made by Led Zeppelin and AC/DC. The songs were so bad that I found myself relieved to have them muffled by the knocking and thumping sounds of the MRI.
The contrast dye felt cold as it was pumped through my vessels, and a bizarre taste and smell that I can only describe as nothing that a human being should be subjected to tasting and smelling quickly followed to add a touch of yet more surrealism to my day.
The medical fellow told me the results of the MRI over the phone. There was good news, in that there was nothing looking out of whack on my left side, which meant the action was confined to my right side. But... the MRI confirmed that the action on the right side was a bit out of control. That one lymph node the oncologist suspected was enlarged was indeed boastfully prideful and full of itself.
It was still unknown at this point whether the lymph node was larger than it should have been because it was stuffed like a Thanksgiving turkey with cancer cells or if it was, as my kind and gentle surgeon suggested, inflamed from that one horrendous and painful biopsy. But regardless of whether the lymph node wore a black cowboy hat or a white one, its puffy presence was intimidating, and somebody had to take that bastard down.
There was just one more test that I had to have, which was a consequence of my having high enough bilirubin levels to possibly disqualify me for the clinical trial. I was scheduled for an ultrasound of my liver to make sure there were no obstructions there.
At this point, I wasn’t sure if I could handle any more news of something being discovered in my body that shouldn’t be there. But it didn’t seem that I was given any choice but to endure yet another deep-sea diving expedition in my internal organs.
* * *
Copyright © 2019 by Ellen Weisberg