I Made It!

The Worst: Losing it in ICU (maybe less than three weeks ago)

Later, when I know more, I'll tell you what I learn about the eighteen days I spent unconscious in the ICU. (I wasn't unconscious in a way. During the two attempts on my life I experienced a scary paranoid hallucination that lasted the whole time: the fantasy was so compelling I needed anti-psychotics to put it down.)

Phelias Fogg, of Doyle's Around the World in Eighty Days, saw much more in the time of his around-the-world journey than have I in my last eighty days, stuck in general hospital (Scripps Green) or, as of mid-week, a rehabilitation hospital (Vibra). He didn't appreciate much of the scenery nor have I. We both just wanted to get it done, like having a tooth crowned: then off to Fiji for a proper recovery! But let me tell you right off — the Vibra rehab hospital ain't Fiji.

Today marks the eightieth day (or, the first 6,825,600 seconds) of complete hospitalization for my allogeneic transplant (from a matched but unrelated donor).  I am happy to report the following:

• I couldn't fill you in earlier because I didn't have the strength: mostly, I slept, but today I've been awake for the whole afternoon for the first time.
• I came near death twice during my two stays in ICU, which is nothing, right? Ivonne had to take all our stuff home more than once. I don't want to imagine what was on her mind.
• The donated cells have engrafted! I have a working, new immune system!
• An epic battle is being fought with the old myeloma. The new immune system seems to be destroying the cancer! When I entered eighty days ago, my light chains (in mg/dL) were in the thousands: pretty much we had stopped looking at the test result since there was nothing we could do about it. Yet last week's measurement showed but 42.00 (remember, though, 1.76 is normal — we have a ways to go). I think the blood tests are showing bone reparation as well (low calcium, high alkaline phosphatase)!
• I don't seem to need anti-rejection drugs. The close-to-perfect match has given me no hint of rejection.
• I'm too weak to change my diapers. I walk with a walker and helpers, and not far. My peripheral neuropathy has become more of the very painful variety than than the numbing one (don't you just love morphine!). Typing requires more strength than I usually have: this is the first email/post I've written in a very long time. I'm always asleep or unconscious or in agony. Or having surgery with too little numbing.
• Ivonne spent every night with me, nearly, since I entered Scripps Green on 11 June. I could not have done this without her.
• Some day there may be a case study: apparently med students and fellows are working on it! (Not confirmed yet.)

There's a lot more, of course, but I'm tired. I do know it was time to let all of you who have supported me, comforted me, prayed for me, hoped for me, visited me, written to me, that I am so grateful for you for making this easier for me. This includes Marsha and John, who have tended to my lawn; Allyson, who is taking care of the difficult or ill pets; Kent P, who visits me at least every week (and has helped me in many other sensitive ways); and Lee and June, who are always there for me when I need them to be.

I would have been dead years ago but for the excellent and, at times, heroic work of my doctors. I would name them if they would allow it. How can I ever thank them enough?

I'll write more as I get better, but I can answer questions if you put them in the comments. The eighty days were excruciatingly busy, I'm sure many of you are wondering about some part or another.