Friday, June 15, 2007


In accordance with my usual schedule, "standard" chemo stopped this last Monday. (June 11) Hopefully it's gone for good. I got my monthly blood tests done yesterday with the expected results. My "M spike" has stabilized and all my blood numbers appear to be "normal". (They were pretty much normal last month too, but we elected to push the envelope a bit and stay on Dex one more time.)

And so, the numbers earned me a phone call and a couple of emails today. It's time for a drastic change. On July 9th, they'll insert an apheresis catheter in my chest (a port) and I'll begin giving myself GCSF (a growth factor) by injection twice a day.

What's gonna happen? GCSF makes bone marrow create stem cells. It also forces those stem cells into the bloodstream for collection. I expect to be in considerable pain for the duration of the collection because of the stress and strain of production and transfer. I'm not looking forward to it. Bone pain is something very few people ever get to experience.... but imagine being in pain, rather like the pain of a bruise, on every single inch of your skeleton. Movement hurts like hell. Breathing hurts. Doing anything, including just lying there, hurts. No, it's not excruciating, but it never stops. Never.

At the end, they'll collect blood and stem cells from the port. Then they'll seperate the stem cells from the rest of the blood cells they don't need, and then they'll freeze the stem cells for later use.

When it's time for the transplant...... they'll kill all my bone marrow and leave me with no immune system....... and re-infuse the stem cells so they can grow into new bone marrow. That'll be 21 to 45 days of hell. Part of it will be in the hospital (again).

Progress is scary.

Sunday, June 03, 2007


There's nothing much to report this weekend folks.

Well, there's this weight issue. It's time for me to go on a diet. I've actually gained ~40# since the week after surgery. That was 139# for a low and now I'm hovering around 180. The actual number itself isn't wrong, but with my newly shaped 'chemo corpus', my old 180-190 is very unattractive. And so, it's time to turn around my recent habit of eating like a teen. I gotta get rid of the blubber.

In other news this evening: I still haven't been contacted about getting my chest port installed. I've followed up and expect to hear something early next week. Will advise.

Finally, I want to discuss the old roller coaster. It still exists. The climb and the fall are more reminiscent of a kiddie ride, but the ups and downs still concern me.

Even without the extremes of the past, I find myself wanting to go down when I'm actually going up, and up when I'm going down.

Dexamethasone (Dex) does things FOR me. I like lots of the effects. On the other hand, Dex does things TO me. I don't like those effects. Being off Dex is the literal inverse of being on Dex. The FOR becomes TO and the TO becomes FOR. And so, I constantly find myself wanting to find a space between where UP starts and DOWN ends.

My current chemo schedule allows me to manage my life a bit better. I take Dex on Friday, Saturday, Sunday, and Monday. I'm off Dex on Tuesday, Wednesday and Thursday.

Tuesday and Friday are my good days. One starts the downhill and the other starts the uphill. I feel like crap on Wednesday. Thursday is just sorta slow. Friday is terrific during the day, but by evening I'm so wired I usually stay up and awake until sometime Saturday (maybe Saturday night). Yeah, I've been doing 40 hour days almost every weekend for a while. (Like tonight.)

Sunday? I'm tired but flying. I get stuff done on Sundays. Mondays are a riot.

Don't get me wrong. These effects aren't nearly what they were 6-9 months ago when I was megadosing. But they still exist. They still change me. They still make me crazy. They still burden Ed.

Anyway, enough whining. Good night to you. I'm gonna go downstairs and work on a project.