Honoring Those Little Milestones

When we think of lung cancer, we might well think about the big milestones we hit if we are fortunate enough to get there: the start of the first treatment, the end of the first treatment, any version of remission, being declared NED, getting through the first year, living long enough to hit year five... It is a tidy list, but not terribly long for most of us. Frankly, we need more reasons to celebrate than just those big ones.

I hit a new milestone this morning, and I'm going out to celebrate. But I'll get to that in a minute.

Recent treatment challenges

The past few months have been challenging. I'm on a new drug and the side-effects are horrid. It works terrifically where it is supposed to -- my primary tumor is now a fraction of the size it was before starting this treatment, and overall my lungs have not looked this clear in years. And, yes, I celebrated each scan that showed my new suffering had not been in vain. But it was still suffering.

For two straight months, I endured a head to toe rash that was unlike anything I had ever experienced. It felt like a full-body second-degree burn that itched like crazy. (And I have had both second- and third-degree burns, so I have an idea about how accurate the description is.) I was covered with pus and blood much of the time and had to be careful about leaving traces of myself behind. Then I was given a two-week reprieve and returned to a slightly lower dose.

The two weeks allowed the rash to more or less clear up, but even with the reduced dose, it came back quickly after I restarted the treatment. This was not cause to celebrate. Still, I decided to move forward even as the rash spread and, surprisingly, got just as bad as it had been with the higher dose.

Hope for relief

When I went for an evaluation after completing twelve weeks of the drug, it was quickly agreed that I should reduce the dose again. I thought that would probably make something of a difference. A couple of new prescriptions for palliative medications were filled as quickly as possible and I waited to enjoy my relief.

Which did not come.

The first two days of my newly reduced dose were easily among the hardest I have experienced. It was all I could do not to claw off my face as I tried to sleep. In the mornings, my pillowcase still looked typically like a murder scene, covered with the extrusions of my scalp where the rash was the worst.

Practice patience with my rash

But for some things, we must be patient. I tell myself this a lot these days, and more often than not it seems to be true. The third day felt better, if only incrementally, and by nightfall, I realized that my scalp no longer felt like it was being slowly ripped up from my skull. And in the morning of the fourth day -- today, as I write this -- my pillowcase, for the first time since my very first week of this treatment, was not a mash of yellow and red. Sure, there was a spot or two of blood on there, but nothing to write home about. That wasn't what I was celebrating, however.

When I shower, my skin has been so raw that water feels like acid. And my scalp, as I mentioned, is the worst. But today, my shower did not make me feel like screaming. In fact, it...felt...good... I don't have much hair left, but I massaged conditioner in there like nobody's business. Just for good measure, I did it twice.

Celebrate the small milestones

And that small thing, that is what I celebrate today because for me getting through the shower without pain and drying off without covering my towel in blood, is a milestone I had not even realized I was looking forward to.

We put up with a lot as patients or caregivers or partners in the cancer experience. We have a lot of trials to go through and big events marked on our calendars. But these little milestones, these everyday victories, need to be embraced and treasured.

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.