Monday, May 5, 2014

A Sprinkle of Logistics

It occurs to me that I have not taken the time to spell out the details of this process, and folks may be interested. Feel free to post questions in the comments and I will respond.

On Tuesday, May 6, I'll be admitted at Brigham & Women's Hospital in Boston. The first procedure will be the implantation of two Hickman catheters. Two! That means I can be hooked up to as many as eight lines at one time. Oh, the possibilities! One of these will come out when I am discharged, the other I get to keep until the doctor decides I am through having stuff poured directly into my heart. As it is somewhat difficult to place an iv in my arm due to my excess of valves, I am sort of looking forward to this easy-access alternative for my transfusions in the months to come. It's bad enough to go in for regular stabbings, but multiple unproductive stabbings gets to be the limit. 

Wednesday we will start chemotherapy; I get two different drugs over four days, plus a few bonus infusions of various attractively-named substances. A week from Wednesday I will receive the transplant itself; my donor will be at Dana Farber giving the donation that day, I think. He is 37 years old, probably European and possibly German given the donor statistics (and the fact that I had to sign something saying that I was okay with having an European donor and not concerned about risks of fashionable dress or electronic dance music); I can be in touch with him in two years. Although a bone marrow transplant will change the recipient's blood type, in my case we have the same type so I'll continue with my caveman type O+. Then I have to hang around and enjoy the hospitality for a few weeks while we wait for my blood couunts to recover; my white count is usuallly normal about 21 days after the start of chemotherapy but I've never had a chemo this powerful before (although the transplant tends to speed things up so we shall see what we shall see).

The neutropenic ward at B&W is very strict. I can have visitors but they must wear masks and gowns. No take-out, alas, although there are approved outside foods but I'm assuming it must all be hermetically sealed (the mantra is packaged, pasteurized, processed). I cannot have any fresh food; everything must be cooked. I'd probably starve to death on a diet like that but I won't have the chance since they'll be after me with iv "nutrition" if I drop so much as a pound. My clothes have to be brought in in plastic bags and my books have to be new.

After transplant, there is a recovery period of up to a year. The first few months are the most critical; we are looking for any signs of Graft vs. Host Disease (GvHD), which is managed with medication. And Boy Howdy, are we Managing with Medication! My immune system will be totally naive; imagine an infant without the benefit of the birth process or breastfeeding, and then add immuno-suppressive drugs (lesser-known Roman gladiators named Tacrolimus and Sirolimus). The protocol is very strict. No food that has not been prepared in my kitchen. No fresh/raw food. No playing in the dirt, no watering my plants, limited social engagement (and I have to avoid groups of kids), no dishes, no laundry, no mowing, no raking, no house cleaning, no hugs, no restaurants, no concerts, etc. The primary concerns are germs and molds. 

"But you don't have to be in a bubble!" they say. I guess that means I can hang out the window of my car and shout across the street. 

Seriously, though, I can interact with people, and I can socialize in small groups, preferably outside, as long as I wear a mask. John and the kids can still go to parties, even when I can't. We have a fancy new screen porch and people can come over and sit on it and we can taunt the vicious Georgetown mosquitoes. My kids can play with other kids, they just have to wash their hands and change their clothes when they come inside. Dad does the minding if the babies feel poorly.

I'm going to create a master list of what brands and kinds of food we buy and set up a charge account at the local grocers so that people can pick things up for me. Folks are welcome to cook for John and the boys or to bring ingredients for recipes. Any dishes that I have to heat to pathogen-killing temperatures are probably also safe. Anything I don't have an answer about I can ask the staff at Dana Farber.

Despite the intimidating list of don'ts, I anticipate that the recovery will go smoothly and be fairly simple. My doctor in Portland says he has been amazed by how easy the recovery has been for his last several transplant patients, and I am in the best category for risks and positive outcomes. My cytogenetics, which are the dna markers on the marrow blast cells, are totally normal, which means that I have what is called a "deep remission." My leukemic cells had abnormal markers, so this means that the lab was not able to detect any tumor cells in my latest biopsy. This round of chemo will make it extremely difficult for any that are hiding to survive, and the new marrow will bring the pain to any that try to creep out in the future. My health is otherwise excellent; my gut is in pretty good shape considering the abuse and my organs are strong. Really, I anticipate that my biggest challenge will be managing the food rules and interpreting them according to my diet and lifestyle, and the need to repair my gut after treatment.

Also, I can't have grapefruit juice until I am off the immuno-suppressants, because it doesn't get along with the gladiators. That is sad.

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