Wednesday, September 23, 2009

One Year Ago

It's hard to believe my stem cell transplant was one year ago today! Unfortunately, my immune system was not reborn. It's still limping, dragging, stumbling along. So many jokes about being a lifelong underachiever just aren't funny any more.

I survived Day 1 of the clinical trial yesterday and since it was a bit of a marathon, I'm going to celebrate that instead. 12 hours in the hospital. Blood draws every 2 hours. IV sedation and another bone marrow biopsy. Disgusting, repulsive hospital food (they're concerned about nausea, but they send buttermilk salad dressing?) but I anticipated that and brought a little food with me; not nearly enough. Lots of little annoyances. By 3pm I was watching the clock... with 5 hours to go!

Finally, at 7:45 the nurse (a new one, right after a shift change) came in the check "vitals" before my release. And I had a fever of 100.9º. The protocol said the nurse had to get someone's okay if I had a temp of over 100.5º. I explained that I'd been under blankets for two hours because the room was set at "arctic" and I couldn't adjust the thermostat. Doesn't matter, the nurse is not going to put her neck on the line by releasing me without someone else's say-so. Here's where it starts getting silly. She pages the doc on call, who never answers the page. She starts going down the line, guessing who to call, consulting -- of all people -- the switchboard operator for suggestions. And I'm getting angrier, she's getting more upset, the few people who answer the page say, "I don't know anything. I'm not signing off." I'm ready to write my own waiver and yank the IV out myself. I felt badly for the nurse, and vice-versa. My friends were waiting for me downstairs and I had no way to reach them. (Duh - we've never exchanged cell phone numbers since we both just use them for outgoing calls.) After she checked my temperature again, I finally bullied the nurse into letting me go. It was traumatic for both of us and we parted with tears and hugs and good wishes.

I had a lengthy discussion with the research nurse in charge of the whole deal; her "system" for medical oversight had proved to be a house of cards. I seriously considered dropping out of the clinical trial, but after I reviewed my litany of complaints, I saw that most of them were quite petty or easily addressed. And the big one, well, everyone is entitled to one mistake, even if it's a humdinger. So I'm going to hang in there for the time being.

Here's the punchline: my Kappa Light Chains have tripled and then doubled since the last labs, just over two weeks ago and the Kappa/Lambda Ser. Ratio and the urine protein are increasing at similar rates. So... there is a chance, even a likelihood, that my oncologist may just pull me off the clinical trial and pop me in the hospital for some high-dose chemo. Well, the slingshots haven't been working, maybe it's time for a cannon.

4 comments:

Holly said...

Dear MM--

Stop messing with LaCootina. I'm serious.

--Holly

Dawn said...

Your site has given me comfort and perspective for the past year. Your journey is showing me how to be a better person and yeah like Holly said...

MM,

Stop messing with LaCootina. I'm serious.

--Dawn

La Cootina said...

Aww, my sincere thanks to both of you!

Sandy said...

Whatever cannon fodder is required, I'm sending Reiki beams along too, because La Cootina is too special to have her light dimmed... go away MM!