I'm sitting in 6E at UCH waiting to get my last chemo infusion of this cycle. I'm also trying to find a voice for this entry, I'm rusty. This has been a strange cycle, the effects of what they are giving me are cumulative and daunting in subtly, it sneaks up on you and provides a blanketing malaise and inertia that I have not known in this treatment. As that builds, the cancer vortex that I've tried so hard to hover above, to some degree, some how snags a piece of your clothing like barbed wire and begins to pull into it. You've got cancer and pretty soon it owns your thoughts and begins to direct your life. I guess it's inevitable.
Tonight it's a week later, Thanksgiving Sunday and I'm reporting to UCH at 7:30 AM. I've had a good day today, but that's after being sicker than I've ever been in my life, ever. For the last 3-days- wednesday and thursday being the worst of it, I've had a reaction to the drug that I got on Monday, they lied when they told me that Friday was my last day of chemo and just threw one on me Monday. Zach came on Tuesday for Thanksgiving week and we had a great day goofing around and getting hard to find bike parts for his fixed gear bike and eating and seeing movies. Erica got here on Thursday and spent most of her time nursing me back to health, missing my really good day completely. However, it's easily been the best Thanksgiving on record just having my kids here in Oak Park. MJ went to South Carolina to be with her daughter, so for the first time I had my kids to myself for three days. I did however fade that night after dinner and just kept sliding until Saturday. Today it's like it never happened, so, there's my point- the disease and its treatment are predictably unpredictable and therefore not far from your mind- you either feel too good or too bad, but you never just feel.
So, here's what's going to take place over the next few weeks. I report in the morning and get a infusion of some magic chemical that is to protect my mouth and nasal system from the radiation. I begin radiation 3 times a day on Tuesday for three days. At that point being very low on a functioning hematological system, they rest me for 2- days and them begin the infusion of new platelets. The rest is watch, measure and wait for my blood system to rebuild itself on my sister's platelets. I believe this will be a rough go, it's basically taking a person to the lowest form of life function and rebuilding a healthy and valid hematology from that point.
I want and ask directly for your prayers, given in love and in what ever form and to what ever greater spirit you see yourself praying to. I believe that I can beat this, but like the first segments of my treatment, the love and meaning that all have brought to me during these last months has sustained me more than the chemistry. While I wouldn't want to do without it, the chemistry treats illness, love treats ones soul and that's how we survive in the end.
I've asked Erica and Zach to make medical updates to this blog for me as I progress deeper into the effects this course of treatment. While I may be able to post for a while, I can't be sure for how long and I want to stay in touch.
Lastly, this has been an amazing experience. The age and time we live in has made it possible for me to tell my story to so many people and feel the love and imagination of friends and colleagues in return. It is a wonderful life I have, it's wonderful to have the freedom to communicate my thoughts, fears, hopes and challenges to family and friends and colleagues. It's at once very private and very public and it couldn't happen but for living in these times.