One year ago, the third of January, I had a doctor’s appointment with Dr. Ullah. I had seen him once prior in late November, when he took a bunch of blood to reinvestigate my eosinophilia. At the January 2023 follow-up, he walked in the room with a printout and gave me a fist bump. He circled stuff on the paper while talking, writing down CALR+. He passed the paper to me, pointed out two words on my computer screen, and told me to write them down myself. Then I was scheduled for a bone marrow biopsy.

Before leaving, I sat in the waiting room and googled these new terms on my phone. I felt calm but with a chill, not exactly at what Dr. Ullah had said, but how he had said it. It came across as bad news. I went back to my office and told my colleague Allison, “They found something, a genetic mutation.” Javi was abroad still for the holidays so I notified him and my nuclear family remotely about the CALR+ news and upcoming bone marrow biopsy.

Thus began a stressful and tumultuous year. When I began this blog, things were looking scary and I thought my time might be limited. Anyone’s time might be limited really, but I was feeling that possibility hard.

A year later, I am a layperson expert about the words on the paper. I don’t have all the answers on those words, and it seems I will only learn more as my blood counts and symptoms change in real time. The info I do have is reassuring for the present, I’m enjoying my life right now, and that’s the best I can ask for.

A few related updates:

1) Eosinophilia is back down again on last CBC.

2) I finished my living will and power of attorney documents. I started the process on a “swedish death cleaning” kick coincidentally around my first appointment with Dr. Ullah. While there is nothing to indicate I need those documents immediately, it is cool to know my proverbial affairs are in order regardless of the circumstance. Now I have to put all my accounts to distribute to my trust.

3) While re-enrolling for health insurance coverage for this year, I noticed a supplemental insurance option called “critical illness coverage.” It appears that had elected for this coverage last year at a total cost of about $280, I would have received a lump sum $30,000 no strings attached payout for the MPN diagnosis. Oof hindsight. I had a ridiculous conversation with an insurance rep about me having a “good cancer” right now and if it switches to a bad cancer later, if that could count to trigger the policy? No, of course not.

4) Speaking of insurance, since I fully transitioned to Weill-Cornell, this letter had less impact on me.

I can’t imagine how it would feel if I was in a different stage/situation to deal with that. AMERICA! 🤦‍♀️

I’m hoping for less to report regarding my blood matters this year. Maybe not even reach my deductible. Here’s to good health and joy in 2024.