David, a retired journalist and science editor, knew how to research his diagnosis, but decided it might be better not to when he learned he had Acute Myeloid Leukemia.
Monty Python said it so well. Nobody expects the Spanish Inquisition. I had just moved to New Mexico in August to live with the love of my life, Bonnie. I had been there less than a month when I started having sores in my mouth. When I visited an urgent care center they did a blood test. They called me with the results a couple days later, saying go to the hospital, now. That’s when I got the diagnosis – AML. It was a real kick in the head. Leukemia didn’t sound good, but I knew people are surviving cancer in much greater numbers, so I didn’t view it as an instant death sentence. But it certainly knocked me back.
At the hospital, the doctor told me about the disease and the treatment. He didn’t sugar coat anything. I knew it wasn’t going to be easy. It felt like it was going to be a long siege and I had to grope with the idea that this might, in fact, kill me. For a moment, I thought I might not be around for the world series, and that was sobering and scary.
I spent 35 days in the hospital. First it was 7-10 days of chemo, then avoiding infection. They wiped out my entire immune system. I dealt with the chemo very well—not many ill effects. But I had to stay put until I was out of the danger zone. This wasn’t exactly what I had planned when I moved west. We’d had a long-distance relationship for eight years and were finally together. We weren’t even married yet.
It was really hard on Bonnie in terms of energy, stress and emotions. She has a demanding job, plus a 94-year-old mother who requires a lot of TLC and doesn’t give much back. She had a full plate before I ever got sick. Still, we are both optimists and felt like there is a plan. It’s not guaranteed to work, but there’s a good chance it will. We talked about it quite a bit. Every now and then I would get a little scared, and we talked about that, too. She’s a little more emotional than I am and would cry sometimes, but she was very supportive.
Finally, I went home and was beginning to get my life together again, when it came roaring back. My white blood cell counts went through the roof. They sent me back to the hospital for another 28 days, and this time gave me a different, more aggressive chemo. It really laid me low. They didn’t think I was going to make it. I was sleeping 20 hours a day, not really eating or drinking. It was rough.
We had originally been planning to travel to New York to see family at the end of October and had to call it off because of my relapse. We were hanging out in the hospital feeling sorry for ourselves and Bonnie said, “Let’s get married!” It was all pretty spur of the moment. Her late father’s anniversary was coming up and she wanted to make a happy memory of the day. She took matters in hand, got her sister ordained to marry us. I couldn’t even get the license at the county clerk’s office, so she got them to come to me. Somehow, it all got done in time for us to get married on November 3rd, her father’s birthday. We did it in the hospital chapel between rounds of chemo, with our families joining by Skype.
When suddenly I was hospitalized a second time with a very life-threatening disease, we were pretty clear-eyed about what might be coming. We had been talking about getting married for a while, but other things just kept getting in the way. I knew I wanted Bonnie in my will. I want her to have healthcare power of attorney, all things that are much more accessible if we were actually married. And we were so in love, so why not?
Eventually I was cleared to go home. Mostly I’ve been feeling pretty much back to normal. I have a little neuropathy in my feet, so I haven’t gone back to running. But the oncologist is pleased with my progress. I am taking a new drug that hopefully will cause the cancer cells to die off like normal cells. If I remain in remission for several months, I would qualify for a stem cell transplant, the holy grail. It’s a risky thing, and usually not offered to someone my age, but because my underlying health is so good, they were willing to put me on the list.
I had a mini-recurrence a couple months ago that knocked me off the list. Hopefully I can get back on it again. This relapse was 3-4 weeks after my second release from the hospital. I had a mild skin rash that my doctor felt it might be a recurrence. He did a skin biopsy and, sure enough, it was leukemia. The disease is constantly shape shifting.
I spent my life researching and fact checking, but I haven’t been too aggressive about googling every possible permutation of my disease. I think it can drive you crazy. And it’s a time suck and I have other things I want to do. I have a lot of confidence in my medical team. They are up to date and very sympathetic. At the time of my diagnosis, I reached out to a couple of experts in my disease that I had access to through my journalistic connections. They both supported the approach my team is taking, so that gave me reassurance.
I go for checkups and blood tests all the time now. My counts are beginning to creep back towards normal again, but I have a long way to go.
When I got sick, there was an outpouring of concern and caring and love from all over. Ex- colleagues, friends, friends of friends, college classmates – the whole panoply of people. I knew that I was liked but was not prepared for that at all. It was really wonderful, almost worth getting cancer to learn that. Now I’m in touch with folks wouldn’t have otherwise been. I think that has helped me feel so positive these days.
Cancer is with me all the time. I see a psycho-oncologist as part of my care. She asked if these thoughts are distracting, but they really aren’t. I am aware that I have cancer, I think about it constantly, but I don’t dwell on it. It doesn’t derail me. I’m able to do everything I want to do. My attitude is, enjoy life while you can. I’ve got to be realistic, but I can get with the program and hope for success. Meanwhile, there is plenty to keep me occupied and happy. I finally found the love of my life. I’m in an exciting new place. I have lots to enjoy, so unhappiness is not something that I feel, even when I confront the reality of my situation.
The other day, I was feeling fine, reading the New York Times, and I happened to see an obit about a guy who died at my age, with same disease. It stuck with me. It’s scary. This disease will absolutely kill you with very little warning. It’s aggressive and unpredictable. I feel great now, but tomorrow I could get a bad infection. Seeing the obit was a sobering, unwelcome reminder of a scary thing. But it didn’t change my underlying optimism.
Staring Down the Disease
Still, it’s hard to look death in the eye. It’s not pleasant. There are no two ways about it—it’s scary and sad. I feel that if I die in the near future, I going to miss out on a lot of things that would be pleasurable if I am around to do them, from seeing Trump turned out of the White House to watching the Mets play baseball. I feel even sadder for the people I’m leaving. A few will be devastated.
But people die unexpectedly all the time. Once, when I was living in Boston, I wasn’t paying attention and missed my stop on the T. I stepped off the train and was about to dash across the platform to catch the train the other way and didn’t even look. It would have been the end of me. People die all the time. It’s a random chance. And underlying health and genes and all. So, I reject the whole “why me” complaint. It is what it is.
When I have dark thoughts, I don’t really push them aside. I let them sink in, then move on. There is nothing to be done about it—it’s a fact that I have AML. I don’t see the point of not dealing with it. You could say I’m just whistling past the graveyard here and acting as if everything is good. But I know what diagnosis I’ve got, and that the prognosis is not great. I haven’t looked at the survival tables. That’s something I don’t really want to know. Every case is different, and I don’t want to walk around with that knowledge. I’m healthy and fit, and if anyone is going to be equipped to beat a disease like this, it’s me.
Update: David’s health never stabilized enough for him to receive the “holy grail” stem cell transplant. In consultation with his doctor and family, he decided to stop treatment and start hospice care in early August. He died at home shortly thereafter, encircled by the love of his family and friends.