palliative chemo.

that's what the genius of Dr. Gore's mind labelled it on her sheet of new medical recommendations.

I think going in to see her was the good idea from my not quite as genius side of the brain trust. compared to the last time I saw her, I'm a different guy.

the whole time I was in hospice, I never made it into the bathroom. now I'm wobbly, but moving from room to room, even putting up and tearing down equipment.

every day still seems better, stronger.

Dr. Gore was very clear. we are not going to cure this thing, she said.

she said, though, to my continued request for a C-T scan and or chest x-rays to determine if the pericardial fluid was returning, if the tumor was shrinking, she said she could tell by seeing me what my story is even better than she could on those scans. I don't believe she knows if my big lung tumor has shrunk, is shrinking...she knows I have not shown any signs of afib for like 5 days now. pulse rate in 70's, and in rhythm.

I went with her. it's obvious I'm doing better.

so I phrased the question, how much healthier do I need to be before we would reach for things to attract even more health...at the risk of something actually curative happening?

she said, the thing about a Phase 1 study drug that would make it...I don't like to say, impossible, she said, but very very very hard...is that they insist you not be on any medications before you enroll. the trouble with the heart would be particularly vexing, in that they don't know what effect a new medication has on a healthy person's heart. they want to make sure the drug is the sole cause of any effect.

heart...and difficulty breathing, the amount of oxygen I'm on.

I can't imagine doing a study and not having the latticework of drugs that has obviously helped me.

so...no Gleevec like study drug for me right now.

but no time like the present, she said, for some low impact, oral, stabilization/ management oriented chemo.

palliative chemo, she called it.

because she is going to see if it can fly under the radar. if I can take the oral chemo and still not bring the division of hospice versus hospital, comfort versus curative, down full force on me.

goals for this new drug, etoposide, would be stunning, stabilizing, even possibly shrinking the cancer. but mostly buying some more time.

I'll pay. buy me some time.

she said, very small side effects compared to anything I've had.

fatigue, nausea, vomiting.

vomiting...haven't had that yet....

she said if she were a gambling woman...which, she said, she is not...she would bet that I would not have any side effects at all.

so we have the drug. I still think I'll start it on Monday rather than tomorrow. Dr. Gore will be gone all next week...resting, I think...she looked so tired today. she would see me the week after...but not, she said, till I have taken a full seven days worth. no point even checking in til then.

I'll spare you the list of other smaller decisions we came to.

except for her saying...I'm a pediatrician. I know butt rash.

she has tricks for it, from caring for kids...

backing off to half a dose of decadron for the afternoon one. less munchies...less speed writing rapping...less awake at night. not easy to cut way back at once...but I like this idea.

fading now...sleep, there is no other lover, I swear I wish to be true, so you can heal me as no one else can.

but...final note...

I asked pointedly if I had heard her say that, if present measures have good outcomes, if I continue getting stronger...that at some point, it would not be impossible to consider a study.

she said she can see these steps towards my comfort and strength possibly leading to the day I could do a study. wouldn't rule it out out of hand.

palliative chemo.

good night, Gentle Reader.