“I can’t surrender. I don’t know how to.”
The Cap, Captain America #437 (1995)
Dark thoughts are seldom more than a nightmare away when youget diagnosed with cancer. They inhabit every corner of your mind. You can ignore them, you can play around with them, you can even taunt them from time to time. But they’re still there. All the time. Ask anyone who’s had a chronic disease, and they’ll tell you the same thing – the physical battle is child’s play compared to the cumulative mental toll.
Over the past two and a half years, I have been incredibly, freakishly,and characteristically, lucky. I had a couple of physically bad months after the surgery. I had a bad July 2012 with the IL-2 treatment. But, more often than not, I have physically felt pretty damn good. Sure, a good mile split now is 10’15” in a 5K as opposed to 7’30” before I got sick- but most days, I feel pretty much like myself. It’s fairly easy to deal in the more or less abstract with the darker thoughts; thoughts of what’s next, thoughts of decline, thoughts of mortality.
I guess that’s what made yesterday’s news difficult. The euphemistic “spots” on my lungs are still growing. They’re growing slowly, which is great –because growing fast would be bad. But they’re growing. And that means at some point, probably in the next four to eight months, I’ll have to go on a pill-form treatment. These drugs, called receptor inhibitors, have proven over time to slowthings down, and give you time. How much time is a matter of great debate; there are freakshow cases who have made it up to ten years on these things. The pills will, with near certainty, extend my life. That’s obviously a good thing!
So I feel sort of like a whiny little shit for what I’m about to write. The most common side effects for this class of drug includes hand-foot syndrome; swelling, redness, and pain in the hands and feet. I’ve known this for a while. Knew it since I was on that trial back in 2011-12 that turned out to be placebo. And that’s why this moment has scared me for so long. Hand-foot syndrome will mean the end of running. I’m not ready to be done with running. Not by a long shot. I spent most of my life avoiding it, and when I found it, it saved me in well-documented ways. I can’t lose it. I just can’t. No matter how slow I am, even if my running at anything more than five miles has to be run 2, walk 2 (repeat for 2.5 hours), it’s what makes me who I am. When I cried yesterday, it was more about possibly losing running than it was dying, and yes, I know exactly how f***ed up that statement is. I can’t surrender. I don’t know how to.
Our great hope is, naturlich, God. Our more proximate hope is for His help in getting on a clinical study of a drug called nivolumab. Itis a new kind of drug, called a PD-1 immunomodulator. It basically stops the ‘programmed death receptors’ which slow down the immune system. They’ve had a lot of luck with it on melanoma patients, and an early trial last year on kidney cancer looked REALLY good. My doc is working on one of these trials. He unequivocally said that if he could get me on, he would. The problem is the study design. They’re looking for people who are virgins to kidney cancer treatment. Since I had the IL-2 battery in summer 2012, I’m not exactly a virgin to treatment. But there is still a possibility I could get in. The PD-1 regimen would be similar to what I went through with IL-2, but a little easierside effects, and even outpatient.
I am full of hope that I can get on that trial. But I’m also still full of uncertainty, sadness, and maybe just a hint of depression right now. Basically, it’s this: I know that, ceteris paribus, I’ve got four excellent months ahead of me, maybe eight, where I can run, I can bike, and I can have adventures, and live a more or less normal life. I intend on packing as much asI can into the time between now and March. In a lot of ways, it is giving me a focus I have been lacking since just after the surgery. Meetings? Yeahhhhhhh, not gonna happen. Committees? After the one this next week, I’m taking a pass. Running? I’m running (if you can call what I do ‘running’) 26.2 miles by Valentine’s Day – it may or may not be in an organized marathon. Maybe it’ll be a group of my local friends and I huffing it out to North Baltimore and back, and being able to say that we DID IT (in less than six hours with any luck). Finding time to get in adventures with my family & closest friends? YES. Teaching stuff at school that’s REALLY important – and, my American studies friends, guess what I will NOT be teaching – the catalytic converter. Suck it, ODE! YES.That’s what I’m gonna do. Most of all, it’s this: Things are good RIGHT NOW. They might not be later. I am having a difficult time with this, but I’m tryingto remember what I teach in the World War II class: Hitler lost a lot of campaigns because he was unwilling to allow tactical retreats. Getting on these pills, when it happens, may be a tactical retreat that allows us to pursue strategic victory. But dammit, I sure would like to skip the tactical retreat, and go for a Hiroshima with the PD-1 drugs! I can’t surrender… I don’t know how to.
The quote at the top is one of the all-time Captain America classics. He's dying, and hallucinating, and remembering battles past. Iron Man rescues him in the nick of time. And did Cap die? Maybe for a second. But in the end, even though it looks bad, he makes it. Because that's what Captain America does.

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