he said, you don't cross the desert and then not climb the mountain.
I got the call from Dr. Gore while I was out gigging today. she said she would be at her desk at Children's Hospital for another two hours.
not only is she calling me on Sunday...but it's a full work day for her. does the woman ever have a selfish moment, not to say even rest?
she said we are going to need to change tactics.
the scan shows a combined growth of the shoulder and lung tumors of about 20 to 23%
dear readers of the blog who remember everything will recall Dr. Elias saying that 20% can be a clinical standard for labeling tumor growth "stabilized".
none of that for Dr. Gore. not working.
I am going to keep my scheduled appointment with her on Thursday, by which time she will have talked to Dr. Elias...as well as conference called with the other four institutions in the Nutlin study, maybe picking their brains as well, and gone over the results of the needle biopsy - remember that?...and have a plan of action, or a menu to choose from.
I try to keep a positive attitude. but the last weeks it's felt like, if this is getting better, what would getting worse be like?
I was ready for the news.
I'm way ready to try something different.
Dr. Gore says that since the cycles for Nutlin-3 are month cycles, I've already spent about enough time to clear out the drug and start another Phase-1 study.
she says there are 9 or 10 being done at University Hospital that might be applicable.
so I don't think...we know about predictions...that Thursday's blog will announce the news that I am taking an extended residence at Kuala Lumpur to check out a miracle drug. miracles aplenty just east on I-70.
but I need to be honest with you caring followers of the blog ("The Blog!!" starring Steve Mc Queen...) about the condition my condition is in, and what this means.
fatigue is fatigue. nausea is nausea. side effects are side effects.
the increasing coughing, and resultant dizziness, have been the real problem of these days.
was it irritation due to Nutlin-3 turning lung tumors necrotic and liquid, chafing my lungs? no.
was it a side effect of the study drug? no.
the growing coughing is the first felt effect of the sarcoma itself.
for some reason, playing music, performing or recording or rehearsing, sparks a lower level of coughing and dizziness. I'm still, so far, able to do everything I've needed to do. I played a four hour rock and roll gig last night...sitting down...and all accounts call it a successful one.
I got up at 3:30 in the morning to go to the bathroom, coughed a couple three times, passed out, and fell to the floor. have a scarlet letter red spot on my forehead.
took me totally by surprise. going to have to be more careful.
but there are times I cough a lot, and must sit. I move from room to room, cough, get dizzy, and need to sit.
it's been 9 months or so since the sarcoma diagnosis. 9, said the online article, of 11.4.
I don't feel 80% of the way to game over.
but I don't know what I will be able to do, for how long.
oh, I'm climbing the mountain, allright. try and stop me. whatever the next drug brings, I more than consent, I insist on it.
but some of my musical folks are scheduling things for September.
yes, scheduling things keeps me hopeful. gives me continuance. inspires me.
but I don't know what next week will be like, much less two months.
I have a party being planned for October 7th, the annoying-as-it-is, I'm-still-here-and-I'm-still- me party.
my part time job as patient may end up offering me more hours at any time. I'll invest anything I have to.
it's still business as usual in the music world.
and my affirmations are as positive as ever, and I still have a healthy disdain for prediction.
I'll climb the mountain. and one day look back on it all. but today, plans are trickier than yesterday.
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