Sunday, December 28, 2008

What I've been up to

It’s been three weeks since I last posted about my attempts to learn about the world of healthcare. I’ve entered a period of reflection while roving among different areas I’ve been studying: the politics of healthcare, the anticancer effects of certain foods, the rapidly evolving world of patient-centered healthcare. That, plus holiday commotion, has led me not to be sure WHAT to say.

It’s been a whirl. The last post was 12/9. Since then:

Sat 12/13: My chorus’s two Christmas Cabaret shows – some say our best show ever

Mon 12/15: Quarterly CT scan follow-up. My remaining lesions have shrunk another 16% in the past three months. Team says: “You’re doing superb!”

Tues 12/16: After work Dr. Danny Sands and I are interviewed by Matthew Holt of The Health Care Blog. It was going to be 30 min but became 56.

Same night: at a Christmas party sponsored by the Invest Northern Ireland people, who had me speak at their October dinner, by total coincidence I ran into Dr. Othon Iliopoulos, head of a kidney cancer program at Mass. General, . Immediately we dived into the power of one’s attitude (he’s a strong believer) and then I launched into questions I’ve had since re-“reading” Anticancer on CD, especially about fighting angiogenesis (the growth of new blood vessels that tumors need).

This was a Big Deal conversation for me. See, I’m now in the group where I have a 50% chance of relapse, and nobody can predict which 50% I’ll be in. That stinks - I am not the type to sit back and hope or fear.

See, Anticancer talks a lot about fighting early tumor growth with various foods, but I’m long past there: what I have left is distant metastatic tumors. I'd asked my oncology team about dietary factors, and they had no answers.

So I asked Dr. Iliopoulos if fighting angiogenesis is good against mets, and he said “Absolutely! Mets can be vessel-limited.”

This is huge news. More on this below. (He gave more detail about how anti-angiogenesis drugs work, but I won't get into it here.)

Weds 12/17: Chorus sang carols at the local hospital and veterans’ home. And this blog got nominated as Best Patient Blog.

Thurs 12/18: The interview podcast went live.

Sat 12/20-27: Christmas week, with a mini-vacation in nearby Newport R.I. The place didn’t have the promised WiFi service! So, gasping for air, I mostly took TIME OFF. And slept a lot. And played with Ginny, and read The Tao of Pooh, and visited wonderful people.

Sat-Sun 12/27-28: Returned, and got my hands on a hard copy of Anticancer, to seek details on those foods. (CDs are great for “reading” in the car, but no good for looking things up!) I sent some detailed notes to Robin Martinez, the terrific RN who co-manages my cancer patient community on ACOR, and after some back and forth, she responded “good work” and I posted it on the ACOR list.

Tomorrow night I’ll post it here.

Why the back and forth? Because I’m not interested in flake-level “this food cures everything” promotions. I’m only looking for things that really have some basis in cellular biology, particularly concerning how tumors grow. That’s what I liked about Anticancer – lots of well-documented, detailed information. What Robin provided was validation that it’s relevant to my type of cancer.

Such is the life of a stage 4 kidney cancer patient at holiday time. Not exactly interested in sitting back and doing the Woe Is Me, They Have No Answers thing.

Plus, this year I'm having a really remarkable sense that every day I live now is a day I might never have seen. So even when the weather stinks, it's like a miracle that I got to see it. Nice.

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