From Both Sides
by Ellen Weisberg
Table of Contents|
parts: 1, 2, 3, 4
When I walked into the room where the ultrasound was to be performed, I was greeted by an older gentleman — the ultrasound technician — as well as two younger men in black suits and ties, who I gathered, based on their interactions with the technician, were not in fact Blues Brothers impersonators but may instead have been representatives of the company the ultrasound equipment was purchased through.
Three strange men.
One me, feeling strangely exposed in front of three strange men.
As politely as I could, I asked if all three of them had to stay in the room as the technician lifted my shirt up and pulled my pants partway down to get access to my liver and gall bladder and whatever else was in the vicinity. Both of the men in suits were very nice and accommodating. One obliged by leaving the room to grab a cup of coffee.
I wrestled a bit with the technician who continued to try to raise my shirt and keep my pants down at a certain level.
“Do you not want to have this procedure?” he asked in a gentle, even tone.
“I do,” I lied, loosening my grip on my clothes and waving the white flag of surrender. I held my breath every time he hovered over an area with the ultrasound probe and kept moving it back and forth over and over again and looking at the screen.
“Do you see anything?” I asked. “Is there anything there? In my liver? Gall bladder? Pancreas?” Is there another tumor? Is there more than one? Is it something other than a tumor? Am I about to give birth any second to an alien baby like in the movie?
The technician told me to take some deep breaths and kept probing and analyzing the screen. After what seemed like hours, but was probably more like 20 minutes or so, the ultrasound probe was retired and I was able to cover my midriff again.
A doctor visited me afterward and told me that my liver, pancreas and gall bladder were fine. I had to restrain myself from jumping for joy at the news that I had at least three body parts that were not disfigured or diseased. I thanked the technician for doing such a good job and helping me to get some decent news for a change. He told me he must be my good luck charm. He also lied to me and told me I was an “excellent patient.” I knew I sucked, but it was nice of him to try to make me think he thought otherwise.
“You have a bit more tumor burden there than we’d like to see,” said the medical fellow.
“We are trying to make it so that you will never have to come back here and see us again,” said the oncologist.
“We are trying to avoid having you need to take adriamycin or some other hard-hitting chemotherapy,” said both the oncologist and the medical fellow.
It was settled. I’d opt to be enrolled in the clinical trial that, through a six-month pre-op combination of hormone therapy and palbociclib, would attempt to shrink the tumor to a size that would allow for a simple lumpectomy and at the same time maybe — just maybe — nail anything that might have ventured out of the questionable lymph node to distal parts of my body.
The big bummer for me was the need for two biopsies to be carried out in the first few weeks of the trial, as I was suffering from serious post-traumatic stress disorder from the first one that had left me bruised and in pain for weeks. The biopsies alone were almost a deal-breaker for me, but the arguments presented in favor of the trial and the long-term potential benefits to be gained were enough to get me to buck up and put on my big-girl panties.
* * *
As I lay on the table in the room where the first of the two biopsies was to be performed, it occurred to me the number of people between hospitals I’d been at that had seen me shirtless. Me, the kind of person who feels embarrassed taking my clothes off in a dressing room in front of one of those big mirrors that may or may not be accompanied by a surveillance camera. My mother told me that after a while, you bare yourself so often that it doesn’t faze you anymore. I wondered how long it would take me to reach that point.
A fine-needle aspiration of the suspicious-looking lymph node was performed as part of the first biopsy to be the tie-breaker between the two opposing predictions of why it was enlarged. I felt far less pain during this procedure than I had for the very first, horrifying one because they made sure to numb the hell out of me this time around.
For the next and final biopsy that followed, I was numbed up even more, to the point where my breasts could have been replaced by bowling balls right then and there and I doubt I would have felt the slightest twinge.
The pain that I did feel on both of the biopsy days was more of an emotional one, a realization as I looked at the “MRN” patient code typed on my paper bracelet that I was on the other side of where I’d been for years. I always had acknowledged that there were real people behind the countless “MRN” patient codes that I’d seen typed on the labels on heparin-coated tubes of blood from leukemia patients.
I would read the names and genders and ages, and I would often form an image in my mind of what they might look like. But there was a kind of detached indifference when I did this, as though my science-oriented brain, just to be able to get the job done, had insulated and protected itself from the distraction of feeling any kind of emotion.
Now, I was an “MRN” number, my name, age and gender typed on the labels of heparin-coated tubes of blood passed along to Institute staff members performing analyses as part of the clinical trial I was enrolled in. I wondered what was going through their own science-oriented minds as they read the labels and went about doing their jobs.
A clinical trial nurse came into the room to collect samples following the second biopsy.
“Will this biopsy tell us if the drugs are working?” I asked her.
“We won’t know until the end of the study,” she said. It was six months away. “Some patients ask to have an ultrasound midway through to determine which way the tumor is going. You may want to ask your oncologist.”
“Yes,” I said, “I’m planning on that. She told me that at a certain point in time, if the drugs are not effective, we’d move to plan B.”
“My problem,” I continued, “is that the main focus of my research is trying to understand and overcome mechanisms of drug resistance. What I’ve been doing for a living is always on my mind, and it makes this hard. I’d like to know while the cancer is in me that the medications I’m taking are battling it.”
One physician who had remained in the room while I was uncontrollably neurosing said she completely understood.
“I do a lot of synergy studies,” I said. “And I’ve read very good things about palbociclib, and I know theoretically my tumor, which is 95% progesterone- and estrogen-receptor positive, should respond to the tamoxifen and Lupron. It’s just so surreal for me to go from hoping drug combination treatments work for the purpose of getting a publication or a grant to hoping they work for my life.”
I received a look of sympathy from the remaining physician. One of several I’d received since I got on my soapbox.
I was sitting at my desk at home when I received a call from the medical fellow, who first congratulated me on the FDA approval of the anti-leukemia drug I had identified in a drug screen. The initial euphoric high he put me on, though, was sliced to pieces around thirty seconds later, when he told me the fine needle biopsy had confirmed the presence of cancer in the one enlarged sentinel lymph node.
Even though I admittedly had suspected it, I still felt oddly numb.
* * *
The next six months of daily pill-popping and monthly shots in the rear end while knowingly carting around a malignant mass and at least one contaminated lymph node went by surprisingly fast. The hormone therapy had pushed me into early menopause, and I found myself often oscillating many times a day between feeling I was in the Arctic tundra and feeling I was in a sauna. The palbociclib occasionally lowered my white blood cell counts, and I’d need to stop taking it prematurely to allow the counts to recover before resuming treatment again.
I palpated the mass every so often and generally didn’t feel much change until several months into the treatment. To my delight and surprise and utter relief, I found myself having to go searching for the same lump that had been prominent enough to send me into a frenzied, hysterical panic on that one fateful television-watching evening.
Rough measurements were taken by several of the medical staff and were compared with the original measurements taken six months prior. The tumor mass was believed to have shrunk to approximately one-eighth of its original size, and the enlarged lymph node was also believed to have diminished in size.
“This bodes well for the clinical trial,” I excitedly said to one of the clinical trial nurses, unable to suppress the quaver in my voice.
“This bodes well for your life,” she said, pointedly, momentarily snapping me out of what I can describe only as a bizarre super-nerd researcher mode. How I could have, for that moment, placed progress in science as a priority over my own mortality I’m not sure. But I did.
Just when I thought that all of the nerve-wracking evaluations and measurements and grading were finished, the medical fellow told me that they needed to perform an “Oncotype DX,” which measured levels of 21 breast cancer genes to establish a score that would tell them if my cancer was aggressive and at a high risk for recurrence. A low score meant the cancer had a low risk, whereas a high score meant that there was a high risk, and the benefit of treatment with standard chemotherapy, like the “Red Devil” or adriamycin (doxorubicin), outweighed the cost of the drug’s nasty side effects.
The medical fellow called. I hesitated picking up the phone for a moment and braced myself, the harrowing theme of lymph node positivity during our last over-the-phone conversation at the forefront of my mind. He promptly told me that the oncotype score came back and it was a “9”, which was low. It indicated that I wouldn’t benefit from chemotherapy. The plan of action for me was surgery, followed by radiation, followed by several years of hormone therapy and a biannual intravenous infusion of a bone-strengthening drug that also prevents metastasis.
Surgery was scheduled, on my birthday of all days, which I must admit I did not even try to keep a secret from the medical staff. I happily basked in many parties of pity thrown for me, from the pre-surgery room to when I was pushed in a wheelchair to be picked up outside the hospital.
Because of the anesthesia, my only memories of the event were being taken on a gurney into the surgery room one moment, and then waking up, babbling incoherently about lord knows what to a nurse who was blatantly ignoring everything I was saying. I had a feeling she was used to that sort of thing.
The sentinel lymph node that had originally tested positive for cancer was tested again after it was surgically removed. When the medical fellow called me to tell me whether or not the excised lymph node had residual cancer, I figured based on the mixed bag of both good and bad news he had given to me in our past phone conversations it could go either way this time.
Alas, the verdict was not uplifting. I was encouraged to have a second surgery that would remove axillary lymph nodes that would similarly be tested for the presence of cancer. If positive, I was told the game plan would change and I’d likely be put on chemotherapy. If negative, I could jump for joy, but only after I’d healed sufficiently to be able to do so.
* * *
The next surgery was around two weeks later. I found myself looking forward to being zonked out again on anesthesia and having the experience of not remembering a damn thing between the moments before and after surgery and spewing stream of consciousness musings out to whoever was closest to where I was recovering.
The pain I felt this time, post-surgery, was more intense than the pain I had felt after the lumpectomy, and for a few weeks I couldn’t bend down over our washer at home to pick up damp clothing at its bottom without feeling like someone was stabbing me in the back of my shoulder with a paring knife.
The medical fellow called. I assumed what had become my traditional “going to get life-altering news now” stance and tightly clutched the arm of the chair I was sitting in while holding my breath.
“The results came back for your axillary lymph nodes, and they were negative,” he said.
I breathed a sigh of relief so intense I do believe I made our house rattle for a moment. The Powers That Be in the heavens above had finally released their grip on me and I could proceed to the finish line. Now all that awaited me was six weeks of radiation therapy, kicked off by getting punctured in the chest with tiny freckle-like tattoos to outline the treatment fields.
Daily undressing and redressing in two johnny gowns and being zapped on a table by a rotating machine became frighteningly routine after just a couple of weeks. Before I knew it, it was graduation day, and I crumpled my worn johnny gowns and tossed them into a laundry bin outside the hospital dressing room for the very last time.
I had a mammography a few months later. The words “nothing suspicious” and “benign tissue” immediately took me back to simpler times, when such a report was the anticipated norm, and something I’d taken very much for granted.
Life is for the most part back to being what it was before the cancer diagnosis, with late nights spent sipping lukewarm coffee while calculating and graphing data on my home computer and trying to strengthen proposal aims in time for the next looming grant deadline. Sometimes I forget to take my nightly dose of tamoxifen but, for the most part, it’s become a reflexive ritual like brushing my teeth or washing my face. I just do it without thinking too hard about the underlying reasons why I’m doing it.
I do have to work harder at combating Lupron- or tamoxifen-related weight gain and am eating a considerably healthier diet with minimal sugar and lots of protein. And some days I feel more fatigued than others and can’t figure out why. The office visits every few months with the oncologist and medical fellow are a particularly sobering reminder of what was, and what I will always worry might be again.
And then there are the MRN numbers and patient names and ages and genders that I continue to record in my lab notebook, the bone marrow samples I Ficoll-purify and cells I count on a hemocytometer and against which I test the activity of new targeted leukemia drugs. I will never look at these MRN numbers the same way again.
“You should write about your experiences as a breast cancer patient.” I remember one of the technicians said this to me on the day of my last radiation appointment. “I mean, you ladies go through so much,” she said.
I nodded. “Yeah, maybe I should.”
I agreed it was a journey worth writing about and, in a way, I believe it was a journey that may have taken me to a better place in life. A place where there’s more appreciation of who I’ve been, who I am, and who I still may have the chance to be.
Copyright © 2019 by Ellen Weisberg