Renal Cell Live!

Saturday, June 06, 2009

Just One Of Those Days

Yesterday we went through the end-of-cycle screening tests. The all-day affair was not quite a comedy of errors, but we ran into a few oddments through the day, including an hour-and-a-half wait for the C/T scan. For some reason all C/T scans were taking place in the central facility rather than that of the Taussig Cancer Center (where one rarely has to wait more than 5 or 10 minutes).

I've had enough experience with these to wear no metal - pull-on elastic waisted pants, no jewelry, no zippers - so I don't have to strip down and wear a gown. It's a lot more comfortable and in the long run a lot quicker. While I waited for the scan, I ended up with my arms wrapped around a stranger; a woman in her early 40s, already a cervical cancer survivor, facing something unknown, possibly pancreatic cancer. She was cold, nauseated, and frightened, and I just couldn't sit there and leave her to her demons. I tried to keep her warm, and I let her talk.

I think everyone with cancer has hit the wall, the low point, whatever one wishes to call it, and we all hit it more than once over time. I've always had friends and family there to talk me through it. Can we do anything less than return the favor when needed?

Screening tests turned out well enough that I'm still in the trial. Onward and upward - back to Cleveland tomorrow for Monday's treatment.

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Tuesday, June 02, 2009

Little Ol' Deviant Me

Well, I've been busy since the last posting. My computer is now fixed (fingers crossed that it stays that way). We've completed the first 3 treatments on the clinical trial and I've not had significant side effects to date. However, last week we ran head-on into one of the "things one signs on for" in agreeing to a clinical trial.

Every clinical trial should include a contract, of sorts, between the trial and the patient. I signed one which outlined the side effects, documented the intent of the trial, and specifically stated what responsibilities I have as a participant.

Wednesday afternoon, in the midst of terrible storms and changeable weather, I had a terrible migraine. Later in the evening I developed a fever of 101.2 degrees. I thought to consult the document I'd signed and, lo and behold, I was to call in and report to the Cleveland Clinic for further information, if I had a fever over 100.5 degrees. The oncology fellow on call directed me to go to an emergency room, so off we went to OSU ER, at about 11:30 p.m. After consulting with the Cleveland Clinic, the ER docs bundled me off to the James for admittance, where I landed about 3:30 a.m. At Cleveland Clinic's direction I was placed on an IV course of antibiotics and settled in for the results of blood cultures.

By the time I was in the James, my fever had gone, but we had to wait for 24 hours for the results to come back. I was finally released after observation and constant dosing on antibiotics on Friday afternoon. I now have 4 new antibiotics on my drug sensitivity list, woo-hoo!! Basically they could find nothing wrong with me (I'd suspected that all along, since I have a history of reacting badly to weather changes).

On Sunday I went off for a haircut and lunch with friends. Later that evening I got violently sick to my stomach; I offer no details but it was distressing and unpleasant. I had no temperature and was finally able to sleep once the vomiting was over. The patient contract said to call in if more than one episode of vomiting occurred during a day; I figured it was essentially one long episode and decided I wasn't reporting in.

On Monday morning I called in to Nurse Vicki, told her that I'd had vomiting the day before and was feeling okay but didn't really want to make the trip up that day; would that invalidate my trial participation? She said, "I'll just note this as a deviation, that you didn't come in for your appointment, and I'll see you on Friday for the screening tests."

So now, I'm a deviation from the standard protocol. I'm glad that I didn't get bounced off the trial for missing my last appointment of the cycle, and I'm glad I don't have to make the weekly trek anymore. Let's just hope that the screening tests go well on Friday so I can start treatments again next week.

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