A couple of my major procedures (stem cell transplant, and now CAR-T infusion) and a few of my more mundane ones (maintenance chemo pills cycles or monthly chemo injections) - tracked their progression not using the standard calendar or chronology, but rather by “Days.” The first being Day 0 (which has always been a tad confusing to me - at least), and then counting forward from there. Milestones are measured by Day, initial procedural efficacy is noted by Day, and treatment protocol ‘steps’ for each of my cocktail cycles or chemo regimens are established and tracked by Day. That practice of charting my disease existence by “Days” has carried on for the past 8 years. Point being (yes, there is a point), this journey began at Day 0 long ago, but like any cancer patient - the ‘count’ keeps going.
For example, following the infusion of my re-engineered T-Cells (which is considered Day 0 / 7-14-25, wink, wink IYKYK), I was admitted into the hospital on Day 4. This was done proactively, not because I was in any distress or exhibiting any adverse effects from the procedure, but because research with Carvykti (my CAR-T drug), has shown that side effects can begin at this milestone “Day.” Similarly, I was released from the hospital on Day 10, not because I had achieved some numerical level of any of my “numbers” or satisfied any threshold of medical accomplishment, but because 3-plus years of patient data has shown that the window of primary concern for the most dangerous side effects closes at that Day. And since by that fateful Day 10 I had shown NO symptoms at all of any of the most troublesome negative reactions, I was cleared for discharge. OBTW: This did prove to be the correct decision because I had no change in my stable condition, nor any flare up of the most common and concerning side effects once I was sent home from the hospital on Day 10 - so their chronology-based guidance was accurate and sound.
Like the rest of us in the Cancer Club, I’ll never stop noting my disease status or the tenure of my journey. It’s not a cognizant cancer counting clock that weighs me down, but it’s something I carry with me every day, as a reminder of how fortunate I’ve been and how vigilant I must remain. Focused on my health, focused on my future and focused on my appreciation for everyone and everything that has gotten me here, to Day 2,927 - and beyond (since 8/27/17 - thanks, A.I.).
