Eliot, a 69-year-old retired lawyer, has always been upbeat and active. He worked hard, but also played hard and considered himself healthy, until a stage 4 melanoma diagnosis caught him off guard.
I came home from the gym with pain in my chest and assumed I’d pulled a muscle. But it didn’t go away. A few days later I went to the doctor and had an X-ray. Maybe I had broken a rib. He called the next day and said, “Eliot, I’m so sorry. The X-ray shows you have a large mass in each of your lungs and some small ones.” He sent me for a CT scan that confirmed the presence of cancer in my lungs and ribs, spine and pelvis. But they didn’t yet know the source.
At that point, I totally freaked out. Bone cancer is among the most painful and lung cancer is not very treatable. Neither was good. I assumed I had lung cancer. My older daughter is an ER doctor and she wouldn’t say how bad lung cancer was. I was very anxious, which is unlike me—I meditate every day. But I thought, I’m probably going to die. Is my will up to date? I cried, couldn’t sleep, and felt like I was having an out-of-body experience. This can’t be happening. I never smoked, but my father was a two-pack-a-day smoker who died of cancer. Did I get lung cancer from him?
Emotionally, the first two weeks were horrible. A friend who had prostate cancer called me every day and told me that the not knowing is the worst part, and he was right. Then the doctor told me I had Stage 4 melanoma, which I assumed was even worse than lung cancer. My understanding was that people died of melanoma within 6–12 months.
My family and I spent hours talking to the doctors about melanoma, immunotherapy, and the drugs they would use. I was told that 70% of patients responded favorably and the tumors could shrink. Then it becomes a managed disease rather than a death sentence. I felt a great weight lifted off my shoulders; it gave me hope. I went from two weeks of not being able to sleep and having no hope, thinking my life is over, to thinking there’s a good chance I will live. No matter how awful the treatment was—and it was awful—once I knew what it was, at least I had a plan and could wrap my mind around it and not have anxiety.
I had to take two drugs once every three weeks, for four cycles. The doctor warned that the side effects could be bad and not everyone makes it through the treatment. It gives you diarrhea and headaches and can begin to destroy the liver or kidneys. I was able to do all the treatments; the only side effect was that I got tired, so I’d take short naps.
It was surreal; I didn’t feel sick—I’d go to the gym, stay up late, go to the theater. I generally felt well even though I was going through this horrendous disease. A few weeks into treatment, X-rays showed that the big tumors had shrunk by 30%; the next X-rays showed 70%; then later, 85%, and the doctor could no longer see the little ones. But he said melanoma would always be in my blood. And they didn’t know long-term results of this immunotherapy because the treatment was so new.
After my last treatment I went to Block Island for the summer. While away, I woke up with a terrible headache—and I don’t get headaches. The doctors said it might be an inflamed pituitary gland, and sent me for a CT scan of my head. I thought, I must have metastases in my brain. The pituitary is treatable, do I panic? I was upset for a few minutes, and then decided, I’ll deal with it. In a short time, I had reached a certain maturity; I couldn’t control it, but I could control my attitude. I could meditate, and control food and exercise. But if my body was going to revolt, I couldn’t prevent it, so I let it go. It turned out there was no tumor, they were just trying to figure out how to deal with the pituitary. It was inflamed, so they put me on daily steroids.
My wife suffers from chronic depression and has been on anti-depressants for a long time, so when I was diagnosed, I feared she would become depressed and go down the rabbit hole. She was always anxious about money and thought she might not be able to deal with our finances if I died. So I showed her how to do online banking and other details of our finances. But she didn’t think she could go on without me because we have been so entwined. We were married at age 24 and have been together 44 years. She depends on me so much for emotional support, so she’s afraid of the prospect of being alone. It’s hard to be a caregiver, but she was a great one. She told me that I was so up, she wanted to be up for me, but when I wasn’t home, sometimes she would just sit and cry.
I keep encouraging her to get care for herself; going through cancer is hard. I had to be up for her just as she had to be up for me, but I did cry in front of her once and told her my fears. I would have been up anyway, so I didn’t feel it was a burden; my fear was that she would try to absorb the burden and become depressed. We talked about that, and she said, “You wouldn’t let me, you were so up.” Even after my diagnosis, there were still times I was anxious, but I wouldn’t tell her because I didn’t want to get her anxious, too.
Reflecting on the Enormity
I am finally letting myself feel the enormity of what happened six months after I finished the treatments. It was exhausting psychically—just going through the let-down response now that I’m past the danger point. I can finally take in what I went through. What the fuck just happened to me?
It’s not denial, but I don’t worry about it coming back in five years. I just don’t dwell on it. It would be so easy to go down the rabbit hole and end up depressed. Or, I could stay positive. From the reading I’ve done over the years I know that staying positive helps, so I am meditating and working out. I am going to get through this. All of my friends that have cancer say that I am the most positive person they know. Some of my casual acquaintances didn’t even know that I had cancer since I showed no signs of it physically or emotionally.
I am good at managing my way through intense projects, but it’s only when the pressure is off that you can reflect. You do what you have to do at the focus of the disease. But the weight of the matter can make you depressed when you finally have to process it. I started therapy and have realized through counseling that even though I was so up for so many months, I can only relax now that it’s behind me. The enormity of it is washing over me and I get tearful sometimes.
My therapist asked if I was going to start doing anything differently, and I’m not sure I’m going to change. I’m still going to play hard and love my family. Although I’m far from perfect, I’m a good person. So I’m not going to change my whole life, but I want to be a little more caring and supportive.
I found that I have a huge support system and people love me more than I knew. The outpouring of support from friends was unbelievable. One friend said, “I hope you realize how much you gave everybody else over the years. It’s time we returned the favor.” Word spread and I received support from people I wouldn’t have expected, which helped during the worst times. It’s pretty shitty to have cancer, but a nurse who gave me my treatment said, “I hope I never get cancer, but if I do, I hope it’s the kind you have because it is treatable.” So I feel lucky that my cancer happened now and not five years earlier, before they had these types of treatments.
It doesn’t matter how well you lead your life, cancer is an epidemic and it can get you; it’s not within your control. I was fortunate to have access to great medicine. Through Medicare, I only had to pay $290 for my treatment. There was no economic impact of my cancer, so I wonder how I can now be supportive of others who are going through things like this. So many people have cancer, but not everyone is able to have access to the kind of care I had. I would like to give back more, not just by writing checks—that’s the easy thing to do—but I’m trying to figure out what else I can do to help.