continued trying of the Forgiving Reader's patience...

When We Last Left Our Story, I had just come home from a day I honestly had not expected to come home from.

Decadron was to remain, after Monday's boosts, at 2mg a day in the morning. some stimulant was prescribed and picked up to help on the awakening end...and I have a new theory now as to why drugs have two names. when Dr.Gore had originally brought up the stimulant in the morning and sleep aid at night idea, to help divide day from night, she used a long name for the stimulant that I had never heard. but the way she was talking about it made me vaguely suspicious I might know what it was.

later she slipped up. Ritalin.

am I destined to take each and every drug eventually that I have hated the military industrial pharma complex for overprescribing down our throats? sheesh, morphine and steroids and Prilosec, sleep aids and now Ritalin???

she said that it has the opposite effect on kids from on adults, stimulating adults and calming down kids. I said, Dr. Gore, do we really disagree that Ritalin is the very most over prescribed drug for kids on the planet?

ADD is bullshit intolerance. be proud of yours.

fortunately she said, yes, I will never prescribe Ritalin for a child, it's terrible. and she is a pediatrice, so we trust her about kids.

and I trusted her enough to get the pills. watch these pages, Faithful Reader, to see if I use them.

My feeling is, now that All My Children is gone, I may as well try to fill in some medical soap opera content for fans...

so we see that all of the news was amazingly good. tumor stunted, fluids not reaccumulating.

but it's back to the cancer bottle model as far as what is really going on with me. and as strange as it sounds I'm the most likely guy to make sense of it, more so than the doctors who know their fields, but can't have the time or information to process how I'm feeling or doing.

since Monday, I haven't felt like doing nothing but sleeping...a little more energy than that some days. nights have been a little less down the whole time, a little more towards wakefulness some times, but not to where I turn on the computer or go work. I am allowing a whole lot healthier respect for what those tiny blue Decadron pills can do...and, mind you, I'm still on the track of passing the adrenal making baton to my own glands. just more gradually.

the non rebreather mask, which I remember from my hospital stay, is a definite advantage for the health of my nose, and O2 levels in general. sitting at a tidy 96 right now, on 13 liters. I'm going to take it for awhile before trying other levels...

(Stewart Greisman enjoyed my description of Decadron as my "scapegoat drug". Scapegoating is such an important model that affects both relationships and the way we process the world that there may be a long piece here soon about it. Not Sayin'. Just Sayin'.)

as I've watched more carefully, I've noticed that my O2 levels fall more than I thought when I am moving around.

the last couple of showers, which I perform without any O2 supplement at all, have yielded scary readings. like, 59 or 60. and it takes a little while for the numbers to come up after reapplying the O2...maybe a minute and a half back to 91. I'm thinking it might have been the first time I saw those O2 levels from moving around that scared me on Saturday, but that they weren't indicative of any new situation...

so...the new days...aren't exactly like the Decadron munchy, up to write in the night, good spirits throughout days. for one thing, this is day 5 of my maintenance chemo. I'm glad we're not letting the palliative chemo part of the treatment picture slip away. but if I lose any spunk or energy, I have some reasons for it.

but they are neither the hospital days. breathing is good, being home is perfect, I finished the work on "Sweet Serene" for Lost Alamos, and I don't think my parts hold the song back that much. that feels like a promise made and kept.

it is too late to do other than plan that I will be at the Celebration of Life! party on October 7th. and hopefully with just a little spunk...theeese peoples don' know who zey are dealin' wiff, tellin' me I weel not make it to theees party!! (generic cheesy accent)

much more music ahead to do, and hopefully no pressure to do what I can't do, hopefully much more room in people's hearts and my own for me to rest. every time I don't feel like getting up to do something, I think of how the lattice of support drugs may need tweaking...until I remember having a feeling or two like that when I wasn't a patient, just old. I don't need to feel as good as the best day of my life...just ready for the day, whatever it brings.

sound good?

hang in there, medblog fans...more to come quickly!!!