good day and good news, my cohearts

I had projected that this visit to Dr. Gore might bring good news. and it turned out as good as I anticipated, maybe a little better.

to start with, she's great. in the running for my favorite doc yet. present, personable, knowledgeable, hopeful...and a Sondheim fan.

the drug in the the study is indeed Nutlin-3, the one I read such great things about online, and the study is being conducted in conjunction with M.D. Anderson in Houston, Harvard medical center, Sloan-Kettering in New York, START in San Antonio. she teleconferences weekly with them, and I get the sense that she's on top of whatever research is going on out there.

yes, it's an oral chemo. drugs to counter the side effects are not necessary - no decadron, and read my lips - no neu lasta.

in the consent form, there are six pages of side effects. they represent everything that anyone in the study has ever reported. I feel realistic about discounting most of them. one man reported prostate trouble...he was 75...we don't think the drug necessarily caused it...

the typical side effects are...surprise...fatigue, nausea, and loss of appetite.

but, she said, she would be very surprised if the new regimen wasn't less difficult than the Yolandis treatments.

such good news.

the study is a phase 1...but at the "tail" of it. that means they have a pretty good idea about the dose, the length of a cycle (a month instead of three weeks), and the side effects. I am very very lucky about that. Dr. Gore says that she has had people on Nutlin-3 for up to two years.

she also used a surprising phrase.

she said, it is exciting to think that we may have our finger on a possible achilles heel for cancer.

this drug is being used in studies on a number of different types of cancers, including leukemia. the p-53 thing seems kind of basic to a lot of different cases.

people who conduct studies should have a hope that their findings could change the world. but I think I'm going to let myself have a little of that hope, too.

I'm going to need to log more hospital time than before.

day 1, they watch me for 8 hours. day 2, a quick visit. day 5, 8 hours again. day 6, a quick visit. (yes, Saturday). then labs on day 15 and 22. that's for the first two cycles. there's a scan every two cycles as well.

a lot of time in Aurora.

back in the 70's, when Aurora Mall was new and Aurora was filling western Kansas with thousands of shiny new condos, the trees had just been planted, and Parker seemed like a whole separate town.

it was fashionable then to pick on Aurora...I remember a humorous song sung at a hoot at the Oxford Hotel, in which the real reason weather moves from west to east here is that, "friends, Aurora sucks!" it was seen as a tangled, soulless non-community, a roach motel that it was easy enough to drive into, but impossible to check out.

in the more enlightened post-millennium, where Aurora Mall has become a graffitti marked ghetto center and traffic makes time stand still, the Aurora of the seventies has become sorely missed.

I promise I'll drop a trail of bread crumbs on my way in, so I can find my way back out at the end of the day. they certainly have a nice distant view of the mountains, though...

my intuition was right about the study, too, in that there is no shortage of slots. whereas the study originally included many types of cancer, now it has redefined its focus as only sarcoma patients.

amazing.

so in all 5 study centers...24 patients. two currently in Denver.

yeah, they have room.

Dr. Gore said, you're sick of hearing this by now, but what you have is very very rare.

in any field of my life, I've never seen the view from the top of the bell curve. I've always been your Standard Deviant, in the far out 1% of the tail.

so I won the lottery you never want to win...but I also won big time, being someplace that has a connection to the forefront of sarcoma research.

so that hurdle is crossed.

the second...the needle biopsy...Dr. Gore, best as I recollect, described it as finding out if I have the right kind of p53 or not. different from Dr. Elias' description, about whether the cancer has mutated already or not.

so, not sure of the nature of the test. but I'm sure I was told there's a 50/50 chance of being a candidate for the study, based on the biopsy results.

now, this is the sheerest projection.

but... read what is said about p-53...

If a person inherits only one functional copy of the p53 gene from their parents, they are predisposed to cancer and usually develop several independent tumors in a variety of tissues in early adulthood. This condition is rare, and is known as Li-Fraumeni syndrome. However, mutations in p53 are found in most tumor types, and so contribute to the complex network of molecular events leading to tumor formation.

my dad had a lump in his neck that I remember he had an operation for. not so many years later, he died of what they called lung cancer.

if I had to put smart money down right now on whether this ultra-rare cancer I have was genetically linked to my father possibly having the exact same cancer...I'd make the bet.

and the possibility that it's linked to inheriting only one functional copy of p-53, and that not only would I qualify for the study but maybe get striking benefit from exactly this therapy?

I'd be a real Nutlin case not to think it might look just that way.

biopsy results take ten days to come back. so, darn it, I don't get to experience any side effects for maybe another two weeks. guess I'll just have to keep getting stronger.

I know. if I could start tomorrow, I would. my shoulder is starting to hurt from the tumor. my guitar playing sucks...fortunately, it's really hard to say if it is worse than it ever was. I am aware that, if I start feeling effects from the cancer, it will make the days when only the cure affected me seem like the good old days.

which they were, and are. good, good days.

I'm a little too important for my taste this past week. guiding Elena's project in for a landing, doing the Lost Alamos concert tonight, getting more involved in the UnAssisted Living project, Modniks coming back on line, ReJuveniles playing again on May 21st...and the usual assortment of other projects, gigs, and rehearsals...there have been actual phone calls I've needed to take. too important for my taste.

but May.

the month of permission. May I? You May.

the month of possibility. I May yet kick this thing.

Cinco de Mayo. (literally, I'll take five with mayo, please)

this month, even before I see any docs, I'm enrolled in the Mayo clinic. the renewing powers of spring.

Promise of Spring...that's the title of Elena's CD, over a decade and a half in coming out. and the chorus says,

times are uncertain/ who knows what tomorrow may bring?/ but the muddy earth promises Spring.

"Colonel Mc Croskey, this is Ted Striker. Mayday! Mayday!"

"Mayday? What the heck is that?"

"Mayday? Why, it's the Russian New Year! We can have a parade and decorate a big pole..."

it's April 30th...not time to say mayday yet. the business of my life for the next two weeks will not be the business of preserving life, but instead the business of living.