The Gates of Hell

Dana and I took a walk last night over to the Garden of Rodin Sculpture, which include his Gates of Hell. Pretty cool. There was also a tennis tournament going on, and we saw that Serena Williams was the #1 seed, but that's all we saw. I got to walk around outside because they hadn't started any chemo yet, so I am fine still. Here is a picture of my room.












My mailing address here is:

Stanford Hospital & Clinics
F Ground Unit, MC 5616
JOHN FIORE
300 Pasteur Drive
Stanford, CA 94305

I won't be allowed fruit or flowers because I'll be nutropenic, so just send chocolate...dark preferred.

Yesterday started with me venting to the doctor team that they (Stanford and SLO docs) had just wasted 3 of the more obviously finite days I have remaining by not getting these biopsy slides here, or by not leaving me at home until they were ready and I could have brought them. They looked at me like they hadn't ever considered that our days are numbered, and that some of us have a smaller number. It wasn't their fault, but I had to vent. After I told them how it should have gone down, they asked what I did for a job. I told them I kick asses and take names, basically. I had jokingly introduced Dana as my wife and attorney, so they may have been pondering their words.

At any rate, we now know the course of action. They have the biopsy results, and there are leukemic cells in my bone marrow. The gallbladder was like the canary in the coal mine and we just hit a methane pocket - the canary is dead but we may save the miners.

They put a Peripherally Inserted Cardiac Catheter (PICC) in my left arm yesterday, for chemo in and blood tests out. There is a picture of the PICC line in 2005's February Guided Imagery post. I do not want to bore you all with the same gory details I posted back in February 2005. Let me tell you what is different. We have broadband wifi access, which is great. This time I can't post pictures yet, not because of AOL, but because I grabbed the wrong USB cable.

Today they will start the whole chemo routine just as last time, a slightly updated induction phase as called out by CALGB9511. Three weeks of shutting the marrow down with Vincristine, Daunorubicin, Cytoxan and Prednisone, then when all the leukemic cells are dead, they hope there is some healthy bone marrow left to get going. You leave the hospital when your blood counts return to a decent level.

Once I am in remission are two possiblities. One is we find a sibling bone marrow match and begin that process ASAP. Two is we don't find a sibling match and we begin the much longer process of scouring the general population as registered in http://www.marrow.org/HELP/index.html. During this search period I will continue on maintenance chemo, just as before. Also see http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Steps_of_Donation/index.html
Assuming they do find a match, they will slam my bone marrow with chemo much harder than in the induction phase, because they do not need that marrow anymore and want to kill any little bastard leukemia cells out there. Once they have me prepped, the god-like creature known as my donor will be given filgrastim for five days. This puts the needed bone marrow components into his or her blood, which is then withdrawn, centrifuged for the needed components, and injected into the recipient. Piece of cake. Not long ago, the donor had to have something like 50 bone marrow corings, like a bone marrow biopsy only 50 times worse. If you know a person that is a bone marrow donor from 3+ years ago, don't mess with that person, they are one badass badass. (Debbie Gordon, you go girl!)

After I get this donated bone marrow injected into me, the real fun begins. My body will either accept it readily and begin to fight any remaining leukemic cells (host v. leukemia), or won't accept the donated bone marrow (host v. graft) and all the complications begin. If that happens, the doctors begin the balancing act of keeping my immune system weak enough long enough to allow the donated bone marrow to be accepted, while still keeping me leukemia free. Tricky business.

Because of these conditions, once the bone marrow transplant is done you are required to stay within a short radius of the hospital for daily treatments. We will have to rent an apartment near here for 3 months. Sheesh. Best case scenario is I am cured and living at home by year-end. All of this was pretty overwhelming to Dana and me yesterday, and today it still is overwhelming. But, a walk of a thousand miles starts with one step. And some moleskin and good shoes.

Afternoon update: The chemo is dripping in. For you chemo nuts, here is what I get (today is day 1):
Cyclophosphamide, 2330 mg day 1 Kills everything
Daunorubicin, 87 mg days 1-3 Makes your pee orange, check the photo. The Red Death.
Vincristine, 2 mg days 1,8,15,22 Makes your fingers and toes numb
Prednisone, 120 mg days 1-21 Hooah look out for the grouch
Peg-Aspariginase, 3750 i.u. day 5 and 22

This afternoon I also got the bonus bone marrow biopsy! It turns out that this new crop of leukemic cells has the ability to change the cytogenetics of my bone marrow, meaning I could have that @#!#% Philadelphia chromosome that I avoided last time. Of course then it meant I would go straight to BMT, and that is where I am going anyway. What it would mean now is they would add Gleevec to the cocktail party. This afternoon's bone marrow biopsy showed that my marrow is clogged with sheets of lymphoblasts. It is so clogged that the doctor could not aspirate enough fluid for one of the tests for cytogenetics. She went deeper and deeper, but no go. She went so far in that I wiped out on the wave I was riding at Morro Rock and got flushed back to reality.

So, it turns out they are the ones kicking ass and taking names, and I am powerless to resist. I am scheduled to get sicker tonight or tomorrow, but plan to resist. My blood counts won't tank until next week, so bring on the cookies!