Eric was in the middle of a job transition when he was diagnosed with melanoma at age 55. With two young sons and an uncertain future, he and his wife were confronted with his mortality, while he struggled with a sense of isolation.
A New Yorker for most of my life, I was living up in Boston and had just quit a job with the thought of starting something new. My wife thought a spot on my arm looked a little different, so I went to have it checked out. At first the dermatologist said, “It’s probably nothing”, but biopsied it anyway. When the results came back, she said, “It’s melanoma.” I must have known what melanoma was, but it didn’t register. I asked what it was. She said, “cancer”. I asked about treatment. She said, “There is no treatment for melanoma”, and said she had made an appointment for me at Dana Farber Cancer Institute.
I left there and went to the office of a doctor friend who was head of dermatology at a major hospital. “We have no treatment. Whatever it is, it is. The die is cast.” Not much was known about melanoma at the time. (My understanding now, almost two decades later, is that melanoma has moved from one of the most intractable cancers to one that can be addressed by new immunologic and other therapeutic approaches.)
Isolated and Alone
I felt like the walking dead. This was before I had a cell phone, and it happened to be the afternoon we were to celebrate my son’s graduation from middle school. I couldn’t reach my wife and wandered around for a few hours searching for some center to my thoughts and feelings before showing up at the party. It was in a beautiful spot, overlooking the river, with the sunlight dancing off the water and all these happy people I knew talking and thinking about their kids’ futures, and I tried to join in, but it was all framed in “my mortality. I won’t be there. Instantly, I felt isolated and alone.
Before the diagnosis, I had no symptoms, my body worked well, my brain worked well. I had a privileged view that things were always going to work out fine. It was like I had a “Gardol Shield” around me. I had the luck and the ability to make things work out all right and there was always plenty of time. But cancer ended that. I felt shattered.
Anticipating the Worst
A few days later, I drove with my wife to my first appointment at Dana Farber. I’d had a dangerous heart infection twenty-five years before, but this felt entirely different. This felt like voodoo, not medicine. I tried to understand what might happen and wanted to know the worst. The oncologist explained the danger was metastasis, typically to the lungs, brain, liver. When I asked, “then what?”, he said that they can operate on the brain, and lobes of the lung. When I prompted him about metastasis to the liver, he admitted in a quieter voice, that wasn’t good.
I left feeling crushed. My wonderful wife – whether she heard things differently or just needed to lift my spirits — said, “Well, that wasn’t so bad”. The disconnect cracks me up when I think about it now, but it didn’t then. I looked at her like she was on another planet. “He said if it spreads, they can cut it out.” I just handed her the keys and sat in the car. Genuine, intimate communication was going to be hard.
Searching for Answers
Treatment was first surgery to remove just the lesion, followed by a second surgery to remove lymph nodes. There was no accepted further treatment then, but I found a clinical trial with an experimental drug that I might qualify for. The doctor who had developed the drug, Interferon, discouraged me from taking it because it was toxic and, he said, nothing had indicated it could work for melanoma. But I just felt I should do whatever might work so, if worst came to worst, I would at least know I’d done what I could. I really was thinking about my sons.
Before the second operation with the head of cancer surgery at Mass General, a great guy, I asked his opinion as to whether, if I got into the clinical trial with the Interferon, I should do it. I remember his exact words, “There’s 20 experts in the world and they don’t know what to do. So just do what feels right.” It was crisp and liberating advice at that moment. I’d been wearing myself out reading medical journals and trying to understand the research. He gave me a pass.
I got such nebulous answers to any question I asked that my response was to play all my cards. So, I went down to New York to meet a doctor who might administer the drug in case I didn’t get into the formal trial. I had copies of all the biopsy slides from the Boston hospital in my jacket breast pockets. On the subway down to Union Square, I remember patting my pockets to check they were there and feeling like a suicide bomber. No one knew my mission as they went about their own business and lived their lives.
I got selected into the trial and had Interferon infusions five times a week for five weeks. It was a big room, maybe 50 people, some who looked like they were dying. A couple weeks into the treatment, I started feeling depressed and physically ill. The world changed, I couldn’t see any hope in anything. I couldn’t talk to people. I was in a hole and getting deeper.
It was an experimental treatment protocol, so they weren’t sure how to assess if you could tolerate it. I was told there were more deaths from suicide than from the toxicity. I remember my wife driving us to buy a ping pong table for our kids and just sobbing. My 10-year-old son said, “Daddy, it’s ok”, but his sweet voice made me cry all the more. The terror of cancer stayed with me for six months. It was like waiting for a bomb to drop. I was depressed and physically wiped.
I had promised my younger son when we moved to Boston two years earlier that we would get a dog, but we still hadn’t. So, I fulfilled that promise and got a puppy, just in case. I was really buoyed by that dog and her antics. No words needed. I walked with her in the woods every day, she bounding and me trudging like a zombie through the snow. About six to eight weeks after treatment ended, I began to feel better, more like myself. It felt good to be alive, lucky to have been conceived in the first place.
Testing was scary, first every month, then every three. I could have gone to every six but stayed at three for security. I got to know the women who drew my blood, and to lighten things up I’d grade them on technique. They enjoyed it. I would get chest X-rays and blood tests and then wait several days for the results. Those were hard days.
Because the cancer came out of nowhere in the first place – no pain, no symptoms, no warning – that specter hung on. I couldn’t imagine how I’d get through years of testing and waiting to see if the cancer had spread. Plus, maybe, false positives. All I can say is, you do —or I did. Still, for much of the first year after diagnosis my cancer life felt more immediate than regular life, which wasn’t so great for me or the people around me.
Laughing at Bad News
I got my first cell phone so that when I would see the hospital number come up, I could get out of the house and answer where my kids wouldn’t hear and see me absorb the news. On days when I expected a call, I would get on my bike and ride, so I was away, alone and busy instead of waiting.
About two years into the testing, they found some spots on x-ray of my abdomen (not good news) and they sent me right down for a more definitive PET scan. When I learned the result were immediately available, I walked back to the office area, tracked down the radiologist, got up my nerve and asked what he found. He hesitated, then asked “what has your doctor told you so far?” Chilling. I realized that since he wasn’t my oncologist, he felt he wasn’t authorized to deliver the bad news. I got up my nerve and repeated my question. “You have arthritis in your neck.” he answered. I just burst out laughing. To this day, I feel a lift when my neck hurts.
At the time, I had no focused work. I was consulting on projects from my former employ, but nothing that required creativity or concentrated effort. This contributed to my sense of isolation. Anyway, the fact is I didn’t really feel much like seeing people. Most of my closest friends were in New York, so my support system was really my wife and my kids. My kids were such a life force. They gave me energy, love and purpose. I spent as much time with them as possible. And the dog was great. She was my constant companion and a critical support during treatment.
That Cancer Word
My depression was hard on my wife. The difference in our approaches to the cancer was hard on both of us. She was loving and focused on making things work and supporting me, but my pessimism wore her out. And it infuriated me when she’d come home and tell me what “people” had said “helps” with cancer. I was trying so hard to understand and put my faith in the medical science and she’d walk in with anecdotal BS. The Interferon triggered the depression or deepened it. Either way, I felt I was disappointing her. She couldn’t have liked the version of her husband that she had during that period.
The first time I heard that word, cancer, I started thinking about life differently. I was in excellent health, but had never seen a dermatologist. Fucking stupid. At the same time, even though some part of me thought I was going to die, another part of me said “I’m going to get through this.” But, it was a real emotional struggle to stay on the bright side of that one, day in, day out.
I should add that I do wish I could have done the whole thing “better”. I let it get the best of me for quite a while. I remember thinking while I was in the midst of it that I’d imagined I would have been more centered and could have gotten on with it psychologically or emotionally by that point in my life. I thought my reserves would have been deeper. I did get a good look at myself. More equanimity would have been nice when the shit hit the fan and, particularly, if it didn’t turn out well.
In the Rear-View Mirror
I do remind myself what I learned and can use from the experience. I remember how awful the isolation was, and because it was so pronounced, I am more aware of my tendency to want to do things myself. Now I recognize early when I’m feeling less connected to people and can make a change. If I get low, it’s a helpful direction to recall how that short but deep depression felt. I’m sure I take more pleasure in the elegance of ordinary life. And, certainly, when the emotional, physical or intellectual mojo is on, I appreciate it fully—because that contrast is still there.
I had open heart surgery a few years after the melanoma, and it helped put the cancer in the rear-view mirror. It was an affirming experience. Not that I liked the operation and recovery, but I fully enjoyed how I experienced it. I thought, truly, I love these people, this is great, they’re amazing, they know exactly what they are doing. And when they tell me, I understand it. Unlike with cancer.