A Pain in the Neck

For work, I often have to look up statistics. Just recently, for example, I researched stats for a story on recreational water illnesses. (Spoiler alert: There’s a lot of poo in pools.)

When it comes to cancer stats, however, I know surprisingly little, especially about my own odds. I’m going in for my follow-up PET scan today, the first after April’s autologous stem cell transplant, with only a vague notion of the numbers associated with the success rate.

It’s tricky in my case, because the stem cell transplant is much more effective of reducing the risk of the cancer returning if you achieve complete remission first. I’m not sure if I did, since the doctors weren’t completely sure what the tiny part glowing on the PET scan pre-transplant was—if it was still Hodgkin’s lymphoma, in the unlikely location of my pancreas, or if it was something else.

Today’s scan could show nothing, meaning that the spot was Hodgkin’s lymphoma, and the radiation and stem cell transplant worked in getting rid of it. Or something will still light up. My doctor says that if it’s still a small spot, we’ll just keep an eye on it. If it’s bigger, then it’s probably not Hodgkin’s lymphoma, and we’ll have to figure out what it is. (If you’ll recall, theories include an actual fire in my belly or an E.T.-like glow. Instead of my heart glowing like an endearing extra-terrestrial, my pancreas is where love resides.)

I’ve also never been a numbers person. Numbers have only dragged down some of the only numerals I’ve cared about—standardized test scores and GPAs.

The only D I’ve ever received on a report card was in algebra my freshman year of high school. (Thankfully, gym was pass/fail.) I spent a lot of that class avoiding the chalkboard displaying the numbers, some of which were teamed up with letters in attempt to confuse me. These traitor renegades of the alphabet didn’t even spell anything, something that seems mad and obscene and makes my brain shut down. Instead, I spent my time talking to a friend who sat behind me. So much time, in fact, that the exasperated teacher once interrupted by unending stream of chatter by turning my desk around in the middle of class so I was finally facing forward.

In college, I had to take a class called Math 075, the zero indicating that it was high school level math. I thought I did pretty well in class—some of the math had finally sunk in—but I still only got a C. I got a B in my college statistics class, despite realizing, halfway through the quarter when I looked at the syllabus, that I didn’t have the prerequisite math. (So much for my supposed reading skills.)

At restaurants, when a bill comes and people need to figure out what they owe, I dutifully look at the check, pretending to read it until someone else does the math. It usually works out OK, unless I’m with someone else who also does this and there are only the two of us at the table. I once sat with a like-minded friend over the bill for about a minute before we both had to admit we were waiting for the other person to figure things out.

I had lunch recently with that friend and have been able to go out and enjoy the summer. We spent a night in the Hudson River Valley with friends. I got a Keith Hernandez bobblehead at the Seinfeld-tribute Brooklyn Cyclones game. I’ve seen Dazed and Confused and Sharknado outside and met up with a friend for lobster rolls and ice cream. Things are getting back to normal—even my plentiful facial hair has returned, and I’ve gone to the threading salon to tame my Wham!-era George Michael eyebrows. But there’s always a footnote that plagues me: This might just be temporary.

Today, I feel both nervous and numb. I’m not preparing myself for good news. As I told someone last week, I feel as if I’ve had bad luck and so it seems as if my bad cancer luck would continue, as if it has some sort of momentum. Every scan until now has shown something abnormal, so it seems as if I should prepare myself for another questionable scan. It’s not logical or scientific, just a way to protect myself from getting my hopes up.

Going in to treatment for Hodgkin’s lymphoma, the odds were good. People tell you how lucky you are to have “the good cancer,” because of the high survival rate and the likelihood that the cancer will be cleared up in months. It’s been about a year since I first got an inkling that the ABVD chemotherapy might not be working. Since then, I’ve had three months of Brentuximab, two rounds of ICE chemo, two weeks of radiation and the month-long stem cell transplant hospital stay. I’ve fallen in with the unluckiest of the “lucky” Hodgkin’s lymphoma patients.

Another person in this category suggested I join an online group for relapsed and refractory Hodgkin’s lymphoma patients. It’s a very supportive group full of brave people, but it also makes me aware of just how many have to fight this cancer for years—and that some people lose. Within a week, three people died. I don’t know what the percentage that is. If it were for work, I’d have to figure out the stats, but I’m not interested in this morbid task. One seems like way too many.

There are always inspiring stories about those who beat the odds. It’s less inspiring when the odds seem to be in your favor and then you end up in the undesirable portion of those statistics.

I don’t want to ponder my own numbers. Even if the results are good, I’m not going to have a celebration. I’m too wary—almost superstitious that celebrating the end to cancer would invite its return. (Logic isn’t my strong point. It’s too closely related to math. I thoroughly enjoyed my college Intro to Logic class but still got a C.)

I know I’m not the only person who is cautious about optimism. Once you have had cancer, there’s a fear it will return. Something’s made an attempt on your life and you don’t know if it’s ever coming back for you. There’s an invisible target on your back.

Of course, there’s always the unknown other. “I could get run over by a bus tomorrow,” people sometimes say.

Oddly, I’m also paranoid that I will indeed get run over by a bus after going through all this trouble to live. Alanis Morissette would call this irony, but she would be wrong. Irony was when I cancelled plans with friends so I could finish writing a story with statistics about how hanging out with friends is better for your health and well-being than working.

As I head to my PET scan today, I’m going to try not to think about the statistics that may or may not be in my favor or my bad luck. Instead, I’ll try to focus on a good number—I’m not sure of the quantity. It’s the number of people who have been so supportive along the way. That makes me very lucky, regardless of the today’s outcome or what lies ahead.

No matter what happens, I will still try to continue to enjoy each day as much as I can.