Cancer never used to scare me growing up. Even though three of my four grandparents died from it, I’d never even met two of them, and the one grandmother I did know still lived to 87 before lung cancer killed her. Cancer seemed like something that only happened to old people. It was something that happened to other people, not to me or anyone close to me.
Then, in 2001, when I was 25, my mom started having terrible nausea and abdominal pain. Her doctors poked and prodded her for nearly six months before finally sending her for a CT scan, which revealed that she had an inoperable pancreatic tumor. She died eight months and three days later.
Cancer suddenly became my personal bogeyman. Every little symptom I had was most certainly cancer. Once a physical showed that I had microscopic blood in my urine. Another time, I was having abdominal pain that didn’t seem to have any cause. Then I had a slight discoloration on my breast that I’d never noticed before. And on and on and on. If I added up the amount of money I’ve spent since my mom died just ruling out cancer, it might buy me a trip around the world.
And then one February morning in 2012, less than two years after my daughter Hudson died and when my son Jackson was only nine months old, I was halfway through my training for a triathlon to raise money for the Leukemia and Lymphoma Society—an endeavor I’d undertaken in large part to try to get and stay healthy so that I could avoid an early death from cancer like my mom’s. I was doing laundry down in my basement when I happened to run my hand over the back of my neck on the right side and was stunned to find a large, hard lump there. When I looked in the mirror, I could see that the whole right side of my neck was actually slightly swollen. Even though there could have been any number of benign causes for these symptoms, something in my core told me that this time, I really did have cancer. And sure enough, after watching and waiting and finally doing a CT scan and a biopsy, I learned that I had Hodgkin lymphoma. (Apparently, it was my special prize for fundraising for blood cancer research.) Two years after my daughter died, I faced the possibility that I might not live to see my son grow up.
When people told me that Hodgkin’s was a “good kind of cancer to have,” because it is one of only a few cancers that are totally curable, I rolled my eyes at them even as I accepted the premise that if I had to have cancer, I was lucky to have gotten this one. And sure enough, after four months of chemotherapy, my cancer was in remission. Since then, I’ve returned five times for follow-up scans to make sure that it stays that way. For the first two years, I went every six months for PET/CT scans, where they inject a nuclear sugar into your body in order not only to show any new tumors but also to reveal any cancerous hot spots that are eating up the sugar faster than other areas in the boy. And while I cringed every time I looked at the nuclear radiation warning emblazoned on the side of the box where the tech threw the needle that had just been in my arm, I was grateful for the regular, thorough scans of most of my body (neck to thighs to cover all of the major lymph nodes in the body), not only so that I would know if my lymphoma had returned but also to know if any other cancers had magically appeared.
Then the insurance company stopped covering PET scans for surveillance purposes, so a year ago, at my two-year follow-up, I got only a CT scan, which would show new tumors but not any developing hot spots that had not yet grown abnormally large. I started to grow afraid again. And to make matters worse, after the two-year scan, I would start getting scans only once a year, rather than every six months, because the chances of recurrence dropped significantly after the two-year mark. (In case you’re wondering, I don’t put a whole lot of stock in statistics. Hudson’s illness was extraordinarily rare, and her chances of surviving it were frankly not all that much worse than my chances of surviving Hodgkin lymphoma—80% for her compared to 90% for me. Statistics don’t mean shit to me.)
On Monday, I’ll have a three-year follow up CT scan to confirm that my cancer is still in remission. It’s the first time I’ve waited a whole year between scans, and probably not coincidentally, it’s the first time I’ve actually been concerned that the news might not be good. It hasn’t been a banner year for me in the cancerphobia arena. I’ve already had ultrasounds of my neck and uterus because of more symptoms that convinced me that I have cancer. Over the past few months, I’ve become increasingly convinced that I’ve developed what are called “B symptoms” for lymphoma, which mean systemic symptoms aside from tumors themselves—things like night sweats, fevers, fatigue, etc. I’ve been constantly palpating the right side of my neck (where my cancer originated), certain that it doesn’t feel quite the same as the left side.
Hodgkin lymphoma may be a “good kind of cancer”—I feel extraordinarily fortunate that unlike so many other cancer patients, my experience with it seems so distant and remote and short-lived at this point that it feels almost like I had an extended, nasty bout with the flu.
But cancer is cancer. And while I don’t allow my fear—either that my cancer has returned or that I have some new kind of cancer—to control me, that fear is always there, beating its quiet, rhythmic drum underneath the movements of my every day.
In two more years and three more clean CT scans, I will be declared cured of Hodgkin lymphoma. After that point, I’ll be just as likely to die of anything else as I am to die of Hodgkin lymphoma. But statistics mean very little to me, and no matter how much I wish it weren’t so, I remain convinced that cancer is not done with me, that another encounter with it is not a matter of “if” but “when.”