New Treatment, New Side Effects - Part Two

Part One of this article detailed the side effects I was excited to see gone as my chemotherapy treatment came to an end, even as they were being replaced by new side effects from a new treatment. Read on for my unanticipated change in perspective after beginning a targeted therapy.

Switching to a gene-targeting pill, I was well prepared by my oncologist for issues of diarrhea, mouth sores, and an acne rash for which I was given an antibiotic. The acne rash I figured would be a wash since I had been dealing with one of those for the duration of my chemotherapy treatment. I was not excited about adding diarrhea and mouth sores, even if they were being swapped in for those side effects I had become so utterly sick of. And let's not forget that I was exchanging needle pokes for pills. That was a major win by itself.

Shedding Side Effects That Became Normalized

The surprise revelation for me was that those side effects I was anxious to be rid of were such a small blip compared to my real experience after the new treatment settled in.

It turns out that the side effects I was most grateful to shed were a couple that I had become so used to, that had been so normalized to my experience, that I did not even notice them toward the end. Or, at the very least, I had accepted them as part of my existence in such a way that I assumed there would be no major shift in how they felt. Specifically, these were the fatigue of both body and mind. I was used to being physically tired. After a few hours each morning where I had the energy to be peppy and get things done, I would often peter out quickly, sometimes needing naps, other times simply slipping into a weird kind of waking coma. I almost never slept well. I rarely felt rested. And my brain, while still basically retaining its same level of creative and intellectual potential when it wasn't shrouded in a chemo-related fog, was equally prone to mental exhaustion.

Having purged the remnants of chemotherapy from my system, this new treatment has allowed my body and mind to rebound. I am more alert than I have been since I began treatment for my lung cancer. I feel better, more physically and mentally energized, than I have in over three years. Each day I wake up surprised. I had no idea how deeply affected I would be by this change. It is reflected every day in my mood. I have increased patience, my smile is more readily visible, my sense of humor is lighter, I am in the most practical sense a happier person.

What amazes me the most is that this pervasive feeling of well-being I am experiencing is in spite of side effects I was not expecting. I am dealing with stiff joints and achy muscles, leading to near chronic pain that comes and goes but mostly lingers. While the mouth sores barely manifested and the diarrhea has proven to be manageable, the acne rash is far worse than what I experienced under chemotherapy. The rash is not so bothersome on the body (the old version was far more uncomfortable) even if it looks more pervasive, but where it really gets annoying is on my scalp. My head is constantly itchy and is often prone to a burning pain. The skin is dry and flaky and constantly red (probably from my incessant scratching). I do my best to treat it with various oils and conditioners, but at best I get only short-term relief.

Evaluating Treatment Trade-Offs

Still, the trade-offs are amazing. I was happy with my chemotherapy, glad to be on it as long as it was working, and I always felt healthy and relatively happy about my life. It was a wonderful thing afforded to me: an ability to keep the cancer in check, in spite of a few side effects that I mostly simply got used to living with, so that I could continue to participate in the activities of life. But, as all things are, how we feel -- and what we value -- is often a matter of perspective. Looking at my years of chemo from the outside, I have a very different view of how the side effects affected me. It would not stop me from going through chemotherapy again if it was the appropriate option, but I am hoping -- again, in spite of the new set of side effects I am now dealing with -- that this targeted therapy is successful enough that I can stick with it for a long while.

I am also hoping that as long as it is working I can retain my perspective about how it compares to my old treatment. Still waking up every day grateful to be feeling so comparatively good, to recognize how my mental acuity is a gloriously ordinary part of my life and to appreciate how I have the energy to keep going all day long without needing a recharge every few hours, is something I never want to take for granted. Having the comparison between treatments allows me a greater sense of gratitude, a deeper appreciation of my good fortune.

And that, perhaps, is a side effect of treatment that I never want to be without.

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.