How Much Is Too Much?

I had posted some images of myself online, detailing the rash I was experiencing with my current treatment. The comments were fast and furious, mostly deeply sympathetic, though with a sprinkling of enthusiastic compliments meant to bolster my (presumably failing) ego. Frankly, I looked horrible, almost mummified in some shots, like a melting man in others. In some pictures, a deep sadness visibly emanates from my eyes. In others, the eyes convey palpable determination.

Is my treatment too much?

The question most prominent on my mind, and implicit in many of the comments I received, was whether the treatment would be too much for my body to bear much longer. I had an important meeting looming with my oncologist to evaluate my progress on the clinical trial I have been involved with. Many bullet points clicked through my mind that I hoped to address. Would my scan show significant improvement in spite of my recent and multiple-dose reductions? What would he make of my cramping legs and hands? Since I last saw him, there had been a marked increase in the intensity of my cough, and now there was a strong pain in my legs when I stood and blood pushed against the sore areas of my rash.

But I can't give up on my therapy

I hardly needed to access the mental list I had been repeating to myself. The moment he took a look at me, his first words were: "it looks like we need to take a break."

But we do not want to give up on the medication. Because cancer treatment is notably difficult, especially for stage IV patients hoping to live out full lives, we are not especially eager to push aside therapies that are working, even a little -- especially when recent therapies had failed completely. And when they are working as well as this one has, it may be worth enduring a little more difficulty along the way. That does not mean we become superheroes, however. I am not wearing a red cape and tights. I need that break.

Settling on a short treatment break

How much of a break is still up in the air? We do not want to lose ground to the tumor, but if my side effects are not completely clear when I restart, I am afraid of them returning quickly and furiously. With new meds in hand to address the inflammation and what turned out to be a nasty bacterial infection causing the cough, the race to clear up my body is on.

My oncologist wanted to restart me in one week, I lobbied for two. While my skin might look all right in the shorter time (and has been clearing rapidly), I know my body well enough to realize it needs some extra time -- and I know that if I am going to have anything close to the same hardships ahead, I will need that second week for a mental health break. When I return to his office, there will be a discussion before the decision. Even if my body looks ready on the surface, I have to also be prepared to face the potential challenges that will still await. I hope that I am.

Risk and reward, those same two words that keep getting balanced in my head every time I am examined. Quality of life gets weighed again against quantity of life. The scale is always sliding, trying to find the sweet spot where we can max out the weight of the rewards we want most. But the final question often comes down to simply this: how much can we bear? How much is too much?

Proudly continuing my clinical trial

In the end, I hope my involvement in this trial helps future patients have an easier time weighing their own questions. More effective therapies that are easier to tolerate are available for many patients than ever before. More choice translates to more opportunities for success. Regardless of how long I can remain in this trial, I am grateful for two things. First, the amazing reduction in my tumor load in a remarkably short period of time. And second, perhaps even more importantly, my contribution to the data that can help pave the way to a future where fewer patients will have to ponder that simple, final question.

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.