Every two weeks, I had been returning to the infusion center at Georgetown. Outside the window, I watched the ongoing construction project. Inside the hospital, I’m hoping for tumor destruction, as measured by lab results and scans. Until January, progress had been more of a mixed bag than advancement like the building’s. Now, growth and spread have surged. Apparently, tumors don’t read the research on how they are supposed to respond to chemo.

After multiple cycles, I learned the infusion day drill — around 9 hours hooked up to IVs. Nine hours is the approximate time for a non-stop flight from Dulles to Honolulu. It’s a good thing I didn’t figure this out sooner or wasn’t given the choice between Hawaii or chemo. I know which one I would have picked.

Intentional: As I waited each time for the first meds to be hung on the IV, I would lay out a portable altar symbolizing the people who are supporting me on this journey. My intention started with being thankful — for caring providers, for access to care, and knowing that when I stagger out of the hospital after chemo, my husband will be waiting to bring me home. Another intention is for patients, families, and providers in the hospital. I’m not the only one; everyone is facing challenges.

“Be kind. Everyone you meet is carrying a heavy burden.” Ian MacLaren

Instead of just remembering cycle numbers, I’ve named each based on holidays. I’ve had Thanksgiving, Army/Navy Game, Winter solstice, Epiphany, Martin Luther King Jr, Groundhog’s Day, and Presidents’ infusions. The medical journey changed course at the beginning of Lent. After a scan on Mardi Gras, I got to skip the Ash Wednesday infusion — a silver lining. The other side of the coin — it turns out the chemo wasn’t working, except for side effects, which had gotten exponentially worse during the previous cycle. The tumor was giving chemo the middle finger.

Elemental: There are earthy aspects to cancer and chemo. The big three are Pain, Poop, and Puke. And the greatest of these is Pain, which can arise as suddenly as a sneeze or as a side effect from medications or digestive system disruptions. Another symptom related to the disease and/or treatment is fatigue, with naps as the antidote. I have adopted the sloth as my spirit animal for this phase and my frequent “meditation” breaks. How my body will react has become increasingly unpredictable.

Existential: In the aftermath of diagnosis, the question — How would you spend time if you knew you only had six months to live? — became more than a random thought experiment. Now, as I step closer to the abyss — or embrace*, depending on your faith perspective, I’m confronting the question of what matters most. And, also recognizing that measuring good days is a moving target. How will I use my diminished energy and focus? What makes sense for continued treatment?

Essential: I am in the process of distilling to essence. The time for aspirational projects, books, and adventures has passed. I am focusing on essentials — connections with the people who matter and legacy — working on things that will outlast me.

© Joan S Grey, 11 MAR 2022 ∞
IndexCardCure™: Phase change
http://www.indexcardcure.com

*Thanks to Katherine Powers for pointing this out…