From Flakey to Wheezy

As I neared the end of my last round of the trial drug I have been taking, I posted a snapshot of my face on Facebook with the text, "they say I'm flakey." It was meant to be a bit of a visual pun, since my skin had been flaking off at an astounding rate. One of the many side-effects that I had been dealing with, the constant barrage of skin dust that trailed me everywhere I went had become a virulent source of amusement for me. That is to say, it angered and disgusted me and stayed constantly in view wherever I sat or walked, the dry equivalent to a snail trail, and I had only one defense mechanism left to make it okay: my sense of humor.

Holding onto my sense of humor

For the past four years, my sense of humor has helped to keep me sane. If I can laugh at the darkness, then nothing can grab me from the shadows. But it is not about being fearless -- there are sure things that can still frighten me. Rather, it has been about not getting swallowed up in the things I cannot control, recognizing the absurdity in a chaotic universe, and allowing myself the freedom to laugh while trying to make pragmatic decisions about my life. Some things, however, really put my willful humor to the test.

Testing my limits

This clinical trial has been one of them. When my oncologist asked me congenially whether I was familiar with the Book of Job, he was only half-kidding about it. Scratch that, I don't think he was kidding at all. There I was, sitting in front of him, my full-body rash finally dissipating and my legs, for the first time in weeks, not painful with edema. But I was gasping for air and waiting on an oxygen tank to be brought in for me. He had me come in to check on the pneumonia that sprang up just as I was preparing to take a break from the trial drug.

My tumor response to the drug had been extraordinary, but the rest of my body not so much. For months, I had been losing weight that I could not afford to lose. My skin was generally intensely itchy or painful or both, my fingers and toes were infected, and, defying reason, I actually looked as bad as I felt. The image I conveyed was so "in your face" that it was stressful just to be in the same room as other people. Even on my good days, when I might forget how I looked, there was palpable shock in the eyes of people I would approach. But my sense of humor held on, managed to save me and even, to some degree, those around me.

Then, with joy, I watched those side-effects "peel away" flake by flake. My body began to remember what it was like before the rash. Could not shake my cough, though. No, that just got worse. And on my last scan, it showed up as quite an advanced infection. Two weeks after that, my antibiotics had run their course but I was experiencing a full-blow wheeze. Where I should have been breathing easier, instead I was struggling for air and feeling more and more fatigued. My humor was failing me. I just did not have the energy for it. If that was being like Job, I wanted nothing of it.

I am resilence despite my fragility

Bodies are amazingly resilient and astoundingly fragile things. I have endured treatments that really felt like they might crush me just to get that one tumor in my lung a little smaller. Each success has felt like a new lease on life. I've celebrated many milestones in the past four years. Now, the powerful drug that had been hammering me so hard was out of my system. But I was hooked up to an oxygen tank and trying to figure out whether it would be enough to get me through the night until my home compressor arrived. It felt a long, long way from the day I posted my flakey image, but it was really only a few short weeks.

The resiliency of me cleared up fast. My skin, my legs, eventually even my fingertips, all began their healing without delay. But the fragility wasted no time in staking its ground. Fragile we are, all of us. And perhaps that is important to remember, too, if we are going to truly appreciate our resiliency and the trials that continue to lie before us.

Appreciate the moment

So I sit here, conjuring a joke for myself that won't come, and so I put it aside for another time. I'm sure that I'll find a good use for my wheeze in the days ahead, something to amuse me when I might otherwise be down or angry. For now, I'm content to listen to what the universe is whispering in my ear. "Appreciate the moment," it says to me, or so I think it should. I've made it through a lot. I'm lucky to be here. Heck, I'm lucky to have this wheeze at all. And I am truly fortunate to have access to medical care that can provide me with a tank of clean oxygen when I need it most.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.