Update from MGH-Boston
I have had to accept that I simply get too much e-mail to keep up with most of the time, and that mass e-mails and blog posts have to suffice - some of you have sent me really great stuff by e-mail or phone, or sent simple requests that could be easily addressed. My energy level isn’t what it used to be, and I just can’t handle big spurts of correspondence. I promise periodic efforts to catch up, and that I at least read and think about everything that comes to my inbox.
Also, I deliberately separated this update from material related to the death of Prof. Scott Deatherage of Northwestern University and the National Association of Urban Debate Leagues, my teacher, boss, mentor and friend. I have been struggling to reduce my thoughts on the subject to text, in the hope that I can contribute to the public memory of Scott’s life and share some of the burden of grief.
For those of you who never had the pleasure, Scott’s obituary is here:
http://www.suntimes.com/news/obituaries/1962574,CST-NWS-xdeatherage29.article
and the public remembrance page is here:
http://www.facebook.com/?ref=home#/group.php?gid=222352468035&ref=ts
Yesterday I started the pre-transplant conditioning regimen in the isolation rooms at Mass. General Hospital in Boston. These are pretty low doses of drugs that probably won’t make me feel sick or lose my hair. It’s supposed to be pretty boring until Thursday, when I actually get my brother’s bone marrow. After that, they hope to have me out of the hospital in 2-3 days - about 10 days stuck in here. Of course, if complications arise, it could be longer.
The two biggest risks with a bone marrow transplant are infection and graft vs. host disease. Graft vs. host disease is an effort by the grafted bone marrow to attack the healthy cells around them, and the inflammatory response of the body to foreign marrow. If it gets too serious, graft vs. host can destroy the graft, or kill the patient. They use immuno-suppressive drugs to treat it - these create the risk of infection. It’s a medical tightrope-walk and every once in a while, someone falls. The hospital quotes a 10-15% treatment-related mortality rate - probably a bit higher than the reality, they say - and think I am likely to do well.
Before I began this round of treatment I had a PET/CT to check on my progress. After I had the middle lobe of my right lung removed in October, there was no visible Hodgkin’s Disease in my body. The procedures I am undergoing now are based on the scientific certainty that somewhere in me there is drug-resistant “occult disease” that cannot be seen with existing technology. I had two cycles of chemotherapy at Northwestern before I came to Boston again, and the most recent scans were there to confirm that those drugs had a positive effect. If there was any disease visible on the scan, that would have meant that despite the tumor, enough “occult” disease survived to produce visible tumors. Fortunately, the scan was clear. There was no detectable disease, which technically means that I am in remission.This is good news - not decisive news, not ideal news, not game-changing news, but solidly good news.
The goal now is to extend my remission so long that it becomes what most people would call a “cure.” A bone marrow transplant - with my brother as donor - is the procedure most likely to produce that outcome.
The transplant process is underway and the really tricky period will last for the next 6 months. For the first 3 months (or so) I will be under a kind of medical house arrest: no raw foods without peels (lettuce bad, oranges and bananas good), no restaurant food, no imported or cream-based cheeses, no nuts, no crowded places, no visitors with colds, no using public transportation, no taxis without gloves/mask etc. etc. etc. These rules also apply while I am in the hospital, eating their food.
I often lose weight in the hospital simply because the food ranges between “utterly intolerable” and “kind of gross.” I noticed that they always ask about a patient’s appetite, but never if the patient is able to stomach the food. My appetite is great - I just don’t want to eat what they supply. So for the last month I have been stuffing myself with anything and everything I am unable to cook for myself, from buffalo wings to Hawaiian ahi poke (raw tuna). The result, thanks to generous support from my friends the Burkes, was that I gleefully exceeded my previous maximum weight by about 5 pounds.
Right now, my hospital room is pretty busy during the day. My mother is here, finding us an apartment for the outpatient phase. She will be coming and going periodically, balancing the necessity of her presence and culinary skills with the demands of her job. My friend, former debate partner and rival Ben Thorpe will be here constantly as my aide de camp. Ben is here celebrating his birthday today with my brother and our mutual friend Chris. My brother took a week off of his job and business school to come here and donate his stem cells. I’m very lucky that he’s healthy, shares my gender and 10 out of 10 genetic markers that indicate compatible marrow. Plus, he’s apparently forgiven me for a number of childhood “pranks” that a lesser man might use to justify refusing to donate (it hurts a little and Gil hates needles).
Depending on how easily the transplant process goes, I may have enough free time to get some writing or other personal projects done. Once I can travel again (6 months), I will start visiting my friends and extended family abroad. In the meantime, I have lots of Kindle books to read (it’s easier to disinfect a plastic gadget than a book or magazine). More recommendations are always welcome. When the reading material gives out, there’s always video games. And if those don’t satisfy, I suppose that in extremis, I can converse with Ben.
My hospital wardrobe and decor was significantly improved by my recent trip to the Big Island of Hawaii. For one thing, the ideal garment for wear on the Medical Oncology Ward is a short-sleeved button-down shirt. Buttons allow easy access to the Portacath, a just-under-the-skin catheter in my upper left collar-bone area. Short sleeves allow frequent blood pressure measurement and accommodate the relatively balmy indoor temperature. Not coincidentally, aloha shirts are short-sleeved button-downs. I also have lovely pictures of the natural and culinary wonders of the island, my girlfriend and I, and our hosts the Burkes. Thanks to the latter, I have an adequate supply of aloha garments. I feel better than I have in months, despite the local dearth of cats, dogs, sushi and other sources of happiness. Ten days of sea turtles, whales, good fresh food, sunshine, perfect weather, love and friendship works wonders.
I’ll try to update everyone after the transplant this Thursday.
DS
2 years ago • 0 notes