Maria, an ophthalmologist and mother of two grown children who loves to golf, play tennis and care for her grandchildren, struggled with the helplessness of supporting Harvey as his cancer progressed.
Harvey was quite a character. His parents were survivors of the Warsaw ghetto and his sister was born in a displaced person’s camp. He was born here in New York in 1949. Harvey just really loved life. He had an incredible intelligence and curiosity, loved to travel, go to the beach, sports. He had a degree as a chemical engineer and worked for New York State for 35 years regulating electric utilities.
His cancer was picked up very early because our internist was extremely thorough. Harvey had a cardiac arrhythmia, which probably developed from adult chicken pox. So, he saw the doctor frequently to monitor his heart. As part of routine medical exams, the blood protein test showed that his levels of protein kept going up. The internist was suspicious, to the point where he scheduled Harvey for a bone marrow biopsy. And then, they made the diagnosis of multiple myeloma.
Choosing the Right Treatment
In 2009 we had a discussion about trying chemo or going straight to stem cell transplant. He wanted to try chemo because he was still very active and didn’t want to miss out on three to four months of his life. I was supportive of that because I knew how important it was for Harvey to be active. But, in retrospect, who knows if that was the right decision.
He started on oral chemo, which he tolerated well initially. In 2011 they collected his stem cells just in case. In multiple myeloma they only do autologous stem cell, and as the disease progressed, he would have to be on very heavy chemo. Around 2012, the cancer broke through the oral treatment, so they started the more toxic, intravenous infusions. Then, early in 2013 he needed the stem cell transplant. And in September, it became obvious that the cancer was back—the transplant hadn’t succeeded.
I could see he was frustrated when his body wasn’t doing what he wanted it to. In the beginning, he could easily go to chemo and play tennis afterwards. But it caused horrible neuropathy. Harvey wasn’t a complainer, but he said that his feet felt like lizard feet. And when it meant he couldn’t play, it was a problem. He was generally very positive, but I could see it was hard on him, as were the other chemo side effects like losing his hair after the stem cell transplant. He also worried that his sense of taste would be affected—he really liked his wine and scotch. The only positive thing was that he used to gain weight very easily. But after the stem cell transplant, he really needed to eat.
Going with the Flow
Harvey never let on about any anxiety. His whole attitude about life was based on his parents—whatever he had to endure was nothing compared to what they went through. His father jumped off a moving train to save his own life. So, Harvey just went with the flow, no use worrying ahead of time. Even though he was used to controlling everything else, he was resigned to his illness, and took pleasure in every day that he still had. Harvey was completely full of life.
Early in 2014, we had been away for a few days, and when we got back home, he said, “Let’s go to the country.” We have a house about an hour north of the city where we like to spend weekends and hadn’t been there for a while. I thought it would be too cold in January and didn’t want to arrive at night. So, we agreed to go early the next day. But he woke up with 105 fever and was diagnosed with viral pneumonia. He died five days later.
Having a Doctor Who Listens
In the first meeting, the oncologist told Harvey he’d keep him alive until something else kills him—the best thing, psychologically, that anyone could have said to him. And he was right. He died because his immune system was suppressed from chemo, not from the cancer. Having a doctor he could trust and really talk to helped to keep us both sane. I tried to keep busy all the time to suppress things—that’s how I cope. It’s not that I wasn’t scared for him or didn’t feel sadness and despair, but it was more about focusing on what I had to do.
I always organized his medications, so that was not a big change as he became more ill. When we were younger and I was trying to get pregnant, he gave me my hormone injections, so turn-about is fair play. I gave him injections to stimulate bone marrow growth.
Harvey was extremely protective of me, even though I went to the appointments with him and knew that he knew he was going to die. For years we were talking about cleaning out old papers, and then one day he took it upon himself to do all that stuff. And then, out of the blue one day he decided that what was missing in my life was a diamond necklace. He knew.
Coping as a Caregiver
The hardest thing was feeling helpless. With my medical background, and my mother having had cancer, I felt I knew what I needed to know. But I had no way to make it better. So, to deal with things I just stayed really busy. Between running around for work and organizing life at home, I didn’t allow myself time to dwell on it. That’s how I got through it. I was mostly suppressing my feelings. It wouldn’t have made a difference if I didn’t. I have a very strong self-protection mechanism, so I just focused on what needed to get done.
Sometimes the balance was hard. Harvey resented that I had to do more stuff for him; he wanted to control it. He used to run the household, balanced the checkbook, and even did the books for my office practice. I made him show me how to bank on the computer. He wanted to just have me watch him do it, but if I wasn’t actually pressing the buttons, then I’d never be able to do it on my own. He wasn’t thrilled about that. After he passed away, I looked at the checkbook, and realized that in the last month of his life he really couldn’t write. His hands were very shaky from the side effects of chemo.
As he got weaker, I wanted to walk him the two blocks to medical appointments, but he wanted to go by himself. So, I gave him his space. He was giving up so much—I could accept this.