My chemo and radiation therapy treatments were over. Two weeks later, I was still underweight, undernourished, exhausted, and was experiencing the cognitive impairment known as “chemo brain”. “Chemo brain” refers to the symptoms brought on by chemotherapy, which include decreased short-term memory, problems finding words, a short attention span, and difficulty concentrating. As challenging as these issues were, it was also essential that I return to work.
There are federal and state statutes designed to protect employees who have cancer and other disabilities. Unfortunately, this was no guarantee that I would be allowed to return to my job following my four month medical leave. In the real world, institutions do not make these decisions based on fleeting feelings of compassion. They weigh the costs, benefits, and potential legal risks, and act accordingly. I wanted to get back as soon as possible to show them that I could still function competently, in spite of my cancer treatments. If I lost my job, I would lose my medical insurance. And if I lost my medical insurance, I’d be fucked.
In March of 2016, shortly after moving into my new apartment, I went back to the office and met with “X”, the administrator who had hired me. I had been out for four months, but it felt like a year. As any cancer patient can tell you, time goes by very, very slowly relative to the rest of the world when you’re in the upside down alternate dimension of cancer treatment. It’s like being in a parallel universe. The worse your experience, the slower it seems.
X debriefed me on what had transpired in the program over the previous four months, and confirmed our goals and objectives for the following year. My ability to retain this information, however, was severely limited. I nodded and gave assurances that I understood, but in reality I was living in La La Land– and I don’t mean Los Angeles.
I had my own separate office, and my assistant Martha was located out front, at the reception desk. For the first few weeks of my return, I became very tired during the day and found it difficult to stay awake. I told Martha that I would have to take naps every few hours and that I would be locking my door– and that if anyone came by to see me, she should call my extension. I realized immediately that I had come back sooner than I should have, but I had given my commitment to get my work done and I had to come through. (Having subsequently reviewed the emails I sent during that period, I’m surprised at how coherent they were under the circumstances.)
In May of 2016 I had a follow-up PET scan, the first imaging since the end of my treatment. A PET scan is used to see if there is any detectable cancer in your body. Most tumors metabolize glucose differently than normal cells, and this can be measured using PET scan technology.
In my case, the news was encouraging: no visible sign of cancer. There was much rejoicing, and I was convinced, at least on some level, that I was cured. However, following this PET scan, UCLA never provided me with any plan for continuity of care, follow up visits, or periodic imaging. Who was in charge of my case? Medical Oncology? Radiation Oncology? The surgeon? I did not know. (Later on, at City of Hope, I would come in at least every 3 weeks to have blood work and see my medical oncologist. PET scans were scheduled every 3 months like clockwork. It gave me a sense of confidence and I felt like the medical oncology staff cared about my welfare– much different than my experience at UCLA.)
During the summer of 2016, a member of our clinical staff, “Z”, was diagnosed with an advanced stage lung cancer and took a leave of absence for medical treatment. By pure coincidence, just a few days after she left, I read a fascinating article in the New York Times about a new cancer treatment called “immunotherapy” (“Harnessing the Immune System to Fight Cancer” July 30th, 2016). That newspaper article was the first time I had heard anything about immunotherapy– it is still highly recommended reading.
Remarkable stories of tumors melting away and terminal illnesses going into remissions that last years — backed by solid data — have led to an explosion of interest and billions of dollars of investments in the rapidly growing field of immunotherapy.
According to the article, there were two types of immunotherapy drugs in the works. One created an individualized treatment for each patient by removing some of the person’s immune cells, altering them genetically to kill cancer, and then infusing them back into the bloodstream. The second type of drug, called a “checkpoint inhibitor”, is designed to remove the cancer cell’s ability to prevent the immune system’s killer T-cells from destroying the cancer.
Patients are clamoring for checkpoint drugs, including one, Keytruda, known to many as “that Jimmy Carter drug” which, combined with surgery and radiation, has left the former president with no sign of recurrence even though melanoma had spread to his liver and brain.
The article talked about a man with Stage IV lung cancer who had an excellent response to a combination of Yervoy and Opdivo, two checkpoint inhibitor drugs from Bristol-Myers Squibb. Keytruda, the checkpoint inhibitor that worked so well in eradicating Jimmy Carter’s melanoma, became part of Merck’s portfolio in 2009 after that company acquired Schering-Plough.
The story also pointed out that in the 1890’s, a physician named William Coley had found a connection between cancer patients who developed infections and their own remission from the disease. He developed a drug he called “Coley’s toxins”, a mix of dead Streptococcal bacteria that he would inject into his cancer patients. The treatments had mixed results (just like today). Some patients died, but others were cured. However, Coley incorrectly assumed that the bacteria were directly killing the cancer cells, when in fact, they were triggering an immune response, and it was that immune response that killed the cancer. Why his treatment worked in some patients but not in others he did not know. But some 120 years later, it appears that researchers and immuno oncologists are grappling with the same questions as they relate to why these new checkpoint inhibitor drugs work for some patients, but not for others.
When I read that Times article in July of 2016, I never thought that I would be in a position where I would need immunotherapy, because I thought that in all likelihood, I was cured. But I was thinking about Z, my co-worker who had just been diagnosed with Stage IV lung cancer. I forwarded the article to her son, thinking that Z may want to ask her doctors if immunotherapy was an option, or could be an option at some point. I don’t know if they ever acted upon the information, but she passed away the following year, in April of 2017.
After I moved into my new apartment in February of 2016, Chalon would come over every Friday night, and we would spend the weekend together. One Friday that summer I met her at the front of my gated community and we drove to my apartment. I asked her where she wanted to eat that night, but she just looked at me and said, “I can’t do this anymore”.
I knew exactly what she meant. I had been completely disengaged since the cancer diagnosis, and things were not improving. While I was pretty sure that the cancer was gone, I must have still had some doubts, unconsciously or otherwise, because my anxiety and depression had not diminished. I was still in survival mode, and was often “in another world” when Chalon was trying to connect with me emotionally. Sometimes when she would speak to me, I was far away, in a kind of trance, like the characters in the show “Stranger Things” when they psychically travel to the other dimension. Only in my case, I was ruminating in my own unfettered anxiety. The same thing had happened with Kathleen 10 years earlier, but this was worse.
I didn’t try to change her mind, nor did I ask her to reconsider, because I knew that her frustrations were valid and that I would not be able to remedy this situation anytime soon.
My inability to change, despite my occasional best efforts, has truly been the tragic melody of my life, the always present minor chord, even before cancer was ever in the equation. But it’s comforting to know that I share this curse with almost every other human being who has ever lived.
Ever since those tense and difficult daily trips to UCLA I had expected this day would come, but I was still in shock. I was losing my girlfriend, my best friend, my lover, my caregiver, my sex, my validator, the woman who had saved my life and had alleviated my suffering when I was sick. What do I do now? I certainly wasn’t in any psychological or physical condition to meet someone new. And how long would it take for me to “get over” Chalon? Six months? A year? Never? And what if the cancer came back?
Well, guess what. Two weeks later we got back together. And then we broke up again a month later. And then got back together again, shortly thereafter. It didn’t leave me in a very secure position– but I also understood that she had issues to work out, things that had nothing to do with me or our relationship, so I cut her a great deal of slack. During that tentative time we took a little trip to Palm Springs and it was quite nice.
And then, like an ominous, dark, apocalyptic-looking storm cloud that seemed to appear out of nowhere on an otherwise clear day, sometime around October of 2016 I noticed a swelling under my left sternocleidomastoid muscle (or SCM), which is located on the side of the neck.
I called Dr. Abemayor. He asked me when I had my last PET scan. I told him it had been in May. “Then you’re due,” he said. But for some reason, I didn’t have the PET scan immediately– UCLA sent me for an ultrasound needle biopsy of my neck lymph nodes first. The biopsies were very uncomfortable– they injected me with lidocaine but it didn’t do much. They stick needles into your lymph nodes and withdraw fluid to see if there are any cancer cells.
And then they told me: the cancer had returned. This was not good. The radiation and chemo should have killed off the cancer the previous January. My PET scan in May was negative. It must have been a very aggressive cancer to make such a comeback.
If my memory is correct, they sent me for an MRI, but I had to wait weeks because they had some kind of “special” machine that was only available in Santa Monica– or maybe someplace else in L.A., I just can’t remember.
I would have to have surgery again to remove the cancerous mass in my neck. After the surgery, we would address the available treatment options.
Sometime in November of 2016 I signed on to Facebook and read that one of my childhood friends, Todd Clark, had passed away. I wondered why there were so few comments in reaction to his untimely death. He was one of us– one of the original Tappan kids from my class at William O. Schaefer Elementary School.
Close your eyes. It’s hot outside. The air is filled with the piercing chirps and pleasing cacaphony of grasshoppers, crickets, and cicadas. Butterflies and bumblebees are all over the place. The Archies’ “Sugar Sugar” is playing on the radio. It’s 1969. Todd Clark lives a few houses away, up on Newport Avenue. I walk over and ring his doorbell to see if he wants to go to “Rock River”– the little stream in the woods near our homes– so we can catch frogs and look for “Indian clay”. That’s how it was in those days. No one’s folks called to make a “play date”. We just took off to see what kind of adventure the day had in store.
Todd was a gentle soul, a Buddha. Not one aggressive bone in his body. He may have been my very first friend in Tappan– we met when I was five years old, when we were both in Mrs. Adler’s kindergarten class. In May of 1969 I went to his birthday party– a movie party at the Orangeburg Theater. We were treated to an animated feature called Yellow Submarine. I remember when the Beatles appeared live at the end of the film. It was the first time I had ever seen them, and I instinctively knew that there was something very special about them.
Todd was also in my cub scout troop when my mom was a den mother. But as often happens at that age, we soon found different friends. In fact, I doubt I ever had a conversation with him after fourth grade. But I never forgot him. (I’m a Pisces with a Cancer moon. I don’t forget people.) Of all of the individuals I’ve known from from my youth who died young, it seems that the vast majority of them were extremely gentle and passive people who never did anyone any harm and were completely devoid of sarcasm, selfishness, or hostility towards others.
So, I heard that Todd passed away, and it was another stark reminder of my own mortality. Based on the cancer recurrence news I had just received, I was preparing for the worst. Instead of writing something about Todd for Facebook, I wrote my own obituary instead, with the intention of emailing it to my family and to my assistant Martha for distribution if and when my passing appeared imminent. I thought about how little my colleagues at work knew about me– I never talked about my past or my private life. So if I died, I’d make sure they knew a little bit more. No, I wasn’t giving up, but I wanted to be prepared. At about the same time, I signed a lease for a new car and wondered what would happen if I died before making all of my payments.
I took another medical leave of absence from work– my second in the past year– and as she did 13 months before, Chalon drove me to UCLA Ronald Reagan Medical Center on a cold December morning.
Unlike my 2015 surgery– which had been an extremely complicated ordeal– this procedure was comparatively simple and straightforward. I think I was under for only about 2 hours. Dr. Abemayor stopped by my bed while I was in recovery. He said something about taking out as much of the cancerous tissue as he could– or maybe he said he had taken it all out– I really can’t remember– but he also said something about my PET scan “having lit up like a Christmas tree”. It’s very interesting imagery, often used by oncologists when they want to convey bad news using a metaphor with lots of happy and non-threatening overtones. A Christmas tree? Presents? Santa Claus? Eggnog? Cookies? Cancer? Oh yeah!!
I only had to spend two nights in the hospital. When I got home, all of my thoughts and all of my energy were focused on one thing: trying to stay alive.