Rich, a 73-year-old retired bookkeeper, is a survivor of Hodgkin’s and non-Hodgkin’s lymphoma. At first, he didn’t feel too strongly about fighting the disease, but ultimately, he’s pleased to be alive.
The first symptom I was aware of was in the summer of 2007. I was attending a family celebration and we had a bottle of wine at the table. I took one sip and experienced a sharp pain in the left side of my tongue. It went away but I noticed that it would recur in response to any alcohol consumption.
I also started losing weight. From my late 50s, my weight fluctuated between 182 and 185 lbs. I started losing about 1/2 pound a day, which is what I’d been told was a reasonable pace for sustainable weight loss. I was down to 160 when I visited my Mom for her 90th birthday in February 2008 and she was very proud of me, so I never took the weight loss as a symptom of illness.
But I took up the tongue pain with my dentist, who could see nothing wrong and suggested I see my doctor. He performed a number of tests, also negative, but recommended an EN&T specialist. More testing, but still nothing. Eventually, in January 2008, we did a needle biopsy that indicated something wrong, so we scheduled a full biopsy.
No Time to Waste
What was supposed to be a 90-minute procedure stretched to 3 hours. The surgeon removed a number of lymph nodes which tested positive for Hodgkin’s disease. My doctor referred me to an oncologist. I was living in San Diego at the time but had spent 35 years in San Francisco. As it happens, my physician there was trained in oncology. He had counseled me when my father was diagnosed with pancreatic cancer in 1996, so my first thought was to be treated by him. He said that was impractical, but he knew the man my San Diego doctor had recommended and thought very highly of him. So, I went with the recommendation.
Diagnosis came back stage 4 Hodgkin’s. As I was a few months away from Medicare, my first reaction was “can we delay dealing with this?” But the doctors nixed that idea and began ABVD chemotherapy, intending to do a dozen treatments. After seven, I had developed what I took for a minor cough, which I luckily mentioned to him. He said this was extremely serious and that continuing the ABVD regimen would be life-threatening. We tried a couple of sessions of Rituxan, which didn’t work. Next step was a platinum-based chemo, which also failed.
A Grueling Process
Originally, my doctor thought my first treatment had a 93% chance of working, but as treatments failed, he became more skeptical. I was surprised at how easy it was to adjust to the idea of mortality. Before cancer, I had dodged two major bullets: Vietnam (I managed to stay out of the service) and HIV/AIDS (I never got it).
People didn’t understand the magnitude of my diagnosis, but I tend to be self-contained. Other people’s ways of dealing with things aren’t appropriate for me—that “I’ll pray for you” type of stuff. People also seemed to take this as something I needed to fight, but I really didn’t have to. We would have a discussion of what was recommended, and either I consented or didn’t, and then I kept my word.
My oncologist then referred me to the stem cell transplant team. I wasn’t sure I wanted to go through the transplant process—it sounded grueling. But my then boyfriend, now husband, Bruce, and my mother really wanted me to have the treatment. So, I consented. After the successful collection of usable stem cells, I hadan autologous transplant in June of 2009. In preparation, I had massive amounts of chemo to kill off my own immune system and the cancer. This chemo did cause my hair to fall out, but it grew back and even grew in dark. After a month in the hospital, I was finally able to go home.
You Can’t Make This Stuff Up
The PET scan a few months later showed no Hodgkin’s, but a spot of non-Hodgkin’s in my hip. We opted to treat this with radiation, which I had between January and March of 2010. Once I was done, my plan was to visit my mother to share the good news, so I’d bought a plane ticket for May. Unfortunately, she died on April 15th. Bruce insisted that I not spend the time alone but instead, drive to Phoenix where he lived to see him. A diabolus ex machina in the form of a truck driven by a Mr. Christ (you can’t make this stuff up!) blew a tire while passing me on the freeway, totaling my car and nearly me in the process. I made the last third of the trip to Phoenix in a helicopter with a morphine drip.
Letting go of control to the cancer team was easier than I would have thought it would be. The scary things were when I had to face my mortality, as well as the pain, and the finances. The doctors quickly demonstrated their ability to manage the pain, although the peripheral neuropathy, which I’ve had since the very first chemo, has never gone away and occasionally interferes with sleeping. I’ve been told that the experience of childbirth is very traumatic, but that the body has a way of making you forget about it. The same thing goes for the trauma of cancer. The reaction to diagnosis and treatment is to block it out. For me, it was the drugs that helped block the pain.
Napping and Waiting
During treatment, I was on my own for periods of time. Bruce came to town when I was hospitalized and at some other times during the chemo regimen, but otherwise I was mostly alone. I had a body worker treating me weekly to help manage the effects of chemo. I found my oncologist to be unusually empathetic, like a doctor from a TV sitcom, and I continue to see him twice a year because I can talk with him in ways that I can’t with others.
But the hardest part of the whole experience was really the exhaustion. Luckily, I had the leisure to take naps when I needed them. The chemo also was tough—eight-hour infusions. And my sense of taste was totally altered. This would last for a few days after each infusion. Food was one of the great pleasures in my life before chemo and it became hard to enjoy it during treatment.
I did feel some anxiety around the testing—my natural pessimism prepared me for that. But the most surprising thing was after I did the stem cell transplant and they discovered the NHL. Even the transplant doctors were puzzled. Throughout the experience, I always hoped that I could just “do nothing,” and the doctor wasn’t opposed to watchful waiting, but if a test wasn’t good, it was on to the next thing.
Living the Life
I realized that life is finite. While I wanted my treatments to work, I was resigned to them failing, so I was pleasantly surprised when things worked out in the end. I’m almost seven years cancer free. I wasn’t sure I wanted to go through the transplant process, but my doctor said it would give me 30 years of life that I wouldn’t otherwise have. I’ve been given seven of those already, so I’m pretty pleased.
I think I live differently today; Having been treated for cancer, I have a very different response than friends and family looking at it from the outside. I have a better understanding that people are different, and I’m more tolerant of that.
I am mostly recovered from all of this. The first chemo damaged the nerves in my feet, so now some parts don’t feel heat, and some don’t feel touch. My hip gives me trouble if I walk too much, particularly outdoors, and I developed heart issues, which the doctor says is possibly a delayed result of the chemo. When added up, I haven’t had any more misfortune than the average person…maybe less. I seem to be happy; I have no explanation for it, but I am pleased to be alive and pleased to be living the life I am living.