Protocol

There's not enough time for all of the tests that my team of physicians would like to run. The plan was to do another bone marrow aspirate early Monday morning. We all know what I've got. The results of various tests in the UK were pretty clear. But there's something about protocol, and running a different battery of tests that perhaps the hospital couldn't run in Lancaster. Honing in on the specifics.

My bleeding has changed all of that.

The Hickman, obviously, is critical to my ongoing care at the hospital. It's something that I've got to have if I'm ever going to be able to take the chemo, or maybe a bone marrow transplant in the future. We're not looking that far ahead yet, though. I can't even roll over in my sleep because I need to keep a ten-pound weight on my chest. The bruises grow hourly.

Another aspirate? After what we went through in England? After all the internal bleeding that's taking place now? Nope. Not gonna happen. No more punctures, no more opportunities for bleeding.

Dr. Collins uses one of the chairs by the window. She pulls it into the middle of the room. We'll say that the entire family is here. Mid-morning, Monday the fifth day of March, 2003. Mom's taken the week off from work so she can spend the majority of the day at my bedside, holding my hand, opening cards and letters, reminding everybody that the need to wash their hands, first thing, before the come anywhere near me. Dad and Jane usually come in the evening -- an unspoken but noticeable arrangement that allows both sets of divorced parents to have hours of time with me, without necessarily needing to share my room with one another -- but this first morning, when Dr. Collins spells out my protocol, everybody is there.

There's a lot of research, she tells us. A lot of debate. For me, for now, we're going to follow a standard regimen of chemotherapy. After that -- after this induction round gets me to the much desired remission -- we'll have had the opportunity to run more tests, to do the requisite detail honing. There will most certainly be follow up treatment, she assures us. Until we know more, however, it's impossible to say whether or not that follow-up will be additional chemotherapy (probably) or a bone marrow transplant (depends on a number of factors, not the least of which is whether or not my sister is a perfect match).

Standard protocol, then, is one week of chemotherapy. That's one of the main reasons for the Hickman. A large bag of potent chemicals will be placed on a rolling cart. The top of the cart has lots of hooks. The heavy colored bag -- red, I think, or maybe yellow -- will be placed on one of the hooks. A line runs into one of the Hickman ports, and the bag drips until it's empty. Slowly. Takes a day, maybe, to empty the bag. Once empty, it will be replaced by another bag -- this chemical, she explains, is called daunorubicin, standard, very, very normal and standard. Repeat for seven days.

At day five, though, another bag, smaller, will be added to the top of the cart. There are plenty of hooks. It'll feed into the Hickman catheter, into my subclavian artery, disseminate through my body however chemicals do that sort of thing. This is Ara-C. A tad stronger than the other stuff, hence the shorter duration. The bag is smaller and also slowly drips. Drips slowly. You can watch the drops forming before they shoot down the clear plastic tube.

Double up on the chemo for the last three days, providing a strong finish. Goodbye crapped up leukemic-blast producing bone marrow, hello (eventually) healthy, productive marrow.

This is the protocol, Dr. Collins explains. Seven and three.

We'll take a break, then, she explains, let you recover. Standard operating procedures. Even after we stop, the chemo will continue to work. We'll do another aspirate then, in about two weeks, one week after we've stopped, to confirm that you've made it into remission. We don't really talk about what happens if I don't go into remission. Bridges later versus bridges now.