Calling It at 40, Moving On

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.

To hear the pharmacist at my infusion clinic tell it, not very many patients continue on chemotherapy as long as I have. At just over two and a half years of maintenance therapy on Pemetrexed (brand name, Alimta), I am the longest continuous patient that he has prepared infusions for. At the end of July, I will have one final chat over the pharmacy counter when I check out of the clinic for the 40th time.

Nothing continues forever without change.

Lung cancer is notorious for creating change sooner rather than later, and I have been fortunate that my rounds of chemotherapy have allowed me the comfort of a singular routine for so long. My adenocarcinoma had been particularly sensitive to Pemetrexed; my metastases were greatly reduced and kept at bay for a long, long time. I should note that my oncologist had a patient who did well on Pemetrexed for nearly twice as long as I have been on it, for a very similar cancer, but in that case, there were no other options yet available for the patient to transition to. I have the luxury of knowing that beyond my chemotherapy lies more than one possible new doorway through which to walk.

Having started treatment with the knowledge that fully half of Stage IV NSCLC patients die within eight months of diagnosis, and less than two percent are still alive at the five-year marker, my plan was simply to live long enough to die of something else, hopefully as far down the tail of the bell curve as possible. I understood the limits of meaning inherent in the statistics -- they are not weighted for age, risk factors, or overall health, and they do not reflect new and better treatment options. But I had no illusions. Every new day would be a gift, each week or month something that I should never take for granted. Almost three years past my diagnosis, I am over halfway toward counting myself as a one-percenter. For a while now, I thought that Pemetrexed would see me all the way there. But it won't.

After my 40th and final round of chemo, I am going to take a short break and prepare for the next phase of my treatment. For a month, my body will have a chance to rebound in ways it has not in what now seems a very long time, if not a lifetime ago. Beyond my concerns about whether I will be moving to a targeted therapy with potentially worse side-effects or into an immunotherapy clinical trial with more frequent infusions and less certain responses, I am looking forward to taking a break from the routine that has come to define the rhythms of my life.

The uncertainty of change

Change certainly brings with it no small amount of trepidation. I feel comparatively great now, almost unimaginably better than I did when my treatment started. As difficult as my repetitive cycles may have been, as much as they have gnawed on me in different ways that make me feel emotionally hammered even as my physical tolerance of the treatment improved, they also gave me the consistent comfort of "business as usual."

It will be a new journey now. A new phase of treatment, a new phase in life; this is where it might be said that a door closes and a new one opens. And I get to choose what is behind either door number one or door number two, without knowing for sure where either door leads.

All I know for sure is that both doors lead forward. The path I currently follow may not be clearly defined, but nonetheless, the path still continues.^1-3