Round two

Last Saturday we took care of one of the clerical tasks that needed to be done, the last Will and Testament and the Advanced Health Care Directive. Fortunately I don’t have much since the stock market was ravaged by the proclaimed ‘sound economy’. We still had to decide who would help Mike through the end of high school, and how I wanted my body to be used. Since I have a medically interesting body, it makes sense to send this battlefield of a body to medical research. We also documented a living will. Let me be clear here, though, I am not kicking it any time soon.

The Advanced Health Care Directive guides people at the time when I will be unable to make decisions. In that document you give authority to someone, typically a spouse. You can also direct any special instructions, and this is where it gets tricky. This is all Plan W, last resort thinking, usually something like ‘Do not resuscitate’ or ‘Send my body to Stanford Univ. Medical for research’. Here is what I gave as a special directive- if I become hopeless - send me to South Korea and enter me in a trial run that uses stem cells as a cure. Why not?

Thus I was forced to spend some time and brainspace thinking about death and dying, and that tainted my weekend a little. Like many warriors before me, I thought about running away from all this treatment, but there is nowhere to go where I won’t be dead in 2 years if untreated. And like most warriors before me, I cleaned my gun, checked my ammo, loaded grenades, and sharpened my bayonet and shovel. Hooah!

It’s almost 6am, and I need to take a shower without getting my central line wet, kind of tricky. The staff at the ITA is anxiously awaiting today’s fashion statement, which will be a very muted tan ensemble, with camo hepa filter covers on my respirator. Yesterday’s ensemble included gambling lounge pants, with cards, dice, Take A Chance, and other gambling items, very colorful, and this time I wore a nice blue shirt.

We got a call from one of the docs tonight; it seems they found more pockets of leukemia around the liver and pancreas. This means I am not in remission, but that knowledge only changes the protocol of chemo, adding a shot of Cytoxan. The next day, another doc comes by and tells me that a group of docs got together and decided the additional toxicity was not worth the result, so we continue as originally planned.

Thur 6am

The radiation machine is big; the business end of it reminds me of the sand worms in the Dune trilogy, or in 'Tremors'.

I am supposed to be getting pretty ill by now, but all I am getting is a rosy glow and some mild nausea pangs. When those come, I eat something. Lisa has been getting daily shots of Neupogen, and everything is moving forward. I have been getting radiation treatments 3 times a day, 7:30, 1:30, and 3:30.

The treatment only takes a few minutes of gowning up, a few more minutes to get set in the right spot, strapped in the sling that will catch me if I collapse. They then align the radiation blocks with the marks they have drawn on my chest and back that outline my lungs, and tape it all in place. Once that most critical alignment is all set, the nurses leave the room and turn on the beam for eight minutes of radiation. There is no sensation from the radiation; if there weren’t a sound of buzzing machinery, and a sign across the room that says ‘Beam On’, you’d never know you were being zapped.

The only thing I have to do in this is stand perfectly still for eight minutes. And that is a challenge. I try to stay occupied through this, counting the tiles on the floor, inventorying the room, trying to determine if the flashes of ‘Beam On’ are one-second intervals. Every two minute or so the nurse checks me over the PA system, and I let her know I am OK.

Friday – I am done with radiation, kept my queasy gut in check, thanks to Zofran and Atavan and Gatorade. The nurses in radiation therapy have taken care of me in these treatments, and the nurses in the recovery area kept me comfortable and informed. They are surprised that I am eating, and so am I since I do not feel that hungry.

All this week I have been lugging around a shopping cart with a backpack strapped to, containing 4 liters of solution, dripping at 150ml/hour. Just before I leave on Friday, they give me a new bag and up the rate to 250ml/hour. If I see a fire on the way back to the apartment I could put it out.

Saturday 8 am

Today I check into the hospital, unit E1. I am in no hurry. Lisa is feeling some effects of her daily Neupogen injections, headaches and bone aches, all expected. I am still queasy but hanging in there, definitely took some hard body shots plus a kick in the groin, and I feel tired. I call round two a draw. Once I get in the hospital they are going to hit me with VP16 chemo, and that should kill any bone marrow I have left.