Wednesday, July 29, 2009
Long Sobering Day
My husband and I arrived for our appointment with the radiation specialist at 10 am. I will be receiving 14 greys (units) of radiation over 4 days. All areas of my body will be zapped except for my lungs, for which they made a shield. The laundry list of possible side effects, short and long-term, overwhelmed my husband and me. Basically, any and every organ can be affected, although they assured me that patients with solid tumors receive many times more radiation and do just fine. I held back the tears until we were alone. I don't like to display emotion in front of doctors.
Next, it was onto the lab where they drained me of 30 vials of blood. This was an all-time high for me, and made me a tad woozy. Time for lunch! We met with Michelle, a friend of our daughter's from our Costa Rica days who's now at Tufts. Eating helped restore some bodily fluids and gave me an energy boost. Just in time to meet with my transplant nurse, who gave us an outline of what to expect once I'm admitted to the hospital. The highlights are as follows:
Enter Brigham and Women's July 31 for catheter placement and room assignment, which will be in the intensive-care transplant pod. Can't wait.
Two days of Cytoxin which can be, you guessed it, toxic to a number of organs, specifically the bladder. To ward this off, I get pumped with fluids and spend 2 days tethered to the toilet.
TBI the next 4 days. Watch me glow.
While I stoically undergo this draconian process, a 44-year old man in Europe, possibly German, will be receiving stem cell stimulating injections for 5 days, and then spend hours tethered to an apherisis machine which will collect the stem cells that will potentially save my life. This is what I plan to focus on during my preparation. My nurse misted up; I was strangely calm, thinking about the altruism of this stranger.
We had to wait an hour to see my transplant doctor, not easy. I tried to read, with no luck, my anxiety scraping the ceiling tiles.
Finally, we saw the doctor, who gave us the skinny on all the risks (quite serious), the statistical realities, the rough course I was about to endure. My emotions had apparently been drained along with all my blood, because I calmly signed the consent forms, talked my way out of a bone marrow biopsy, and referred to the many notes I had taken two years prior, quoting the doctor and generally commandeering the session. At which point my doctor referred to me as as a cockroach who just keeps surviving whatever evil clones and toxins are thrown my way. These three years have certainly been Kafkaesque.
One more meeting, with the social worker; more tears but not mine. Lest you think I'm a zombie or worse, merely devoid of feeling, or worst, suppressing my emotions and in danger of serious psychic injury, let me reassure you I am none of the above. At dinner with old friends visiting from New York, I broke down when dinner wasn't served in a timely fashion, blubbering like a baby in the restaurant.
Today was much better. I had a good night's sleep, ran with my friend Dianne (she biked), relaxed, chatted, accomplished a few things, ate well, and kept my thoughts off the month ahead. I plan on getting a good night's sleep, and spending tomorrow at home doing not too much, except the necessary packing and final arrangements. We'll go out for a family dinner, and I'll eat all the things I won't be able to have for the next month/3months/year.
Then I harden my shell, go without food for days on end, metamorphasize into a young(er) male-blooded European and with luck, love and medical know-how, survive a long long time.