I am CAR-T19

Many apologies for no updates

Many apologies for no updates

October–I’ll backtrack a few months. I had another PET/CT scan which was totally negative, and also not a single detectable b-cell* in my lab work. My cancer killing cells are still working. It’s a fantastic, couldn’t-be-better report.  I was upgraded to NOT getting a PET scan every 3 months. Yay! Having scans so frequently is not great, because of repeated exposure to radiation. My doctors are very cognizant of trying to avoid it if possible. IF POSSIBLE. I’m sure by now I am well over the recommended lifetime exposure to scans, but the alternative is kind of the same. No bueno, it is what it is.

January. I’m flying for my appt. because who knows if the roads will be open. The flights from where I’m at to Seattle have been canceled. The airport is an hour away. 3am I’m up to go catch that flight. But who am I kidding, because I’m going to go have some tests done, basically learn my fate, so there was no sleeping anyway. As my husband is driving me to the airport, our vehicle malfunctions? I’d say breaks down, but this is a newer car that starts acting squirrely displaying all kinds of error messages. Return home for MY car–and let’s just say I’m not very sensible for highway driving vehicles. I tend toward very small, impractical things with removable tops. It was an EXTREMELY COLD and slow trip. We were almost out of gas but there was NO TIME to stop. Somehow the plane arrives an hour late. Uber to the clinic, no idea how late I was for my 1st appt. This kind of thing stresses me to no end.

I wait for-ev-er for the appt. with the Dr. Somewhere in there I creep to the desk to see if maybe…perchance…there is an earlier gap in the schedule. There’s a chance. I arrive 30 minutes before the gap and they take my right back for my vitals! 2 hours early, I’m elated and shocked! Then I’m sent back out to wait…my regular time rolls around and I’m summoned, then told don’t worry, he’s only running “a little” late. I’m the last spot of the day. Everyone is coating up & heading out. I’m worried I will miss my flight back. I insist on leaving the room door OPEN so I can glare at anyone who passes. Brush my hair, listen to show tunes, try not to have a meltdown and pace the room. Mentally recite the poem “If” by Rudyard Kipling, specifically dealing with Triumph and Disaster. I give myself a mental deadline to make it to the airport at boarding time. It comes & goes. Ask random person in the hall…how can I get there in rush hour traffic? Mentally calculate cost of missed flight vs. uber or taxi.

My appt is great. Everything is GREAT. I suspect that everything that has gone wrong was just so I could savor how sweet good news is. I’ve been feeling fantastic, and now even the scan is optional. As always, I inquire generally about the rest of the study. Progress? How are other patients doing? What a difficult, roller coaster job that must be. My doctor is thrilled with the successes, but I can see the turmoil over the patients who weren’t a home run. He is so determined to unravel this process and improve it. It is a puzzle that has some of the most brilliant minds working on it. It overwhelms me still. There is no end to my gratitude to these medical professionals. I want to hug all the staff I know as I leave, but I don’t.  The mental tab for my Uber to the airport doesn’t phase me. I wait in the rain for a lost Uber driver who can’t find the clinic and is not happy to go to the airport in rush hour.

I make it on time! The Uber driver is my hero! I give him a tip equal to the fare! Life is still great! Straight to security I realize my drivers license is nowhere on me. I lost it at the OTHER airport that morning. Meltdown Level 5 is approaching, but I meet with a TSA VIP and every document I have that identifies me and get through. Naturally the plane is late, my joy is unphased. Email from Uber…my driver isn’t paid because my card is declined. Suspicious of fraud, my bank has protected me but marred my reputation as a decent Uber user. I refuse to get upset.

Broken down car. Lost my license (the thought of that ugly ass mugshot floating around annoys me, along with my info!). Still in the running for fantastic day award.

*b-cells are a natural part of the immune system. my cancer is a b-cell cancer. the treatment targeted ALL b-cells successfully, so part of my immune system is now missing.


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