February 19, 2017

I am adjusting my update cycles, because the evening slot seems not to work as well now that I am home. By the time I finish with kid bedtime activities each night, I only want to go to sleep myself. Taking time to write up a report—though satisfying—keeps me awake later than I want. Hence my lack of posted updates since Thursday.
Conveniently, my daily arsenic infusions provide a perfect opportunity: every morning at 9:00 I come to the hospital, check in, take some anti-nausea pills, wait half an hour, get my arsenic infusion started, wait an hour, and finally head home again. That’s a lot of time to write, should I choose to. So here I am today.
We have had several days of record-breaking warmth in Minnesota: above 60º F (15.6º C) in February! This has made for some really nice opportunities for me to get out of the house and take some very pleasant walks. I have now moved well beyond my once-around-the-block-in-nineteen-minutes pace from last week. Yesterday I walked around several blocks, down to Lake Harriet, past the Rose Garden and Peace Garden in Lyndale Park, and back home again. Then I napped. Meanwhile, Audrey and Aurora delighted in riding the Razor scooters which Santa Claus gave them for Christmas. I project that our household will have two newly-competent bikers in the very near future. 🙂
I drove myself to the hospital this time, so that Tricia and the girls could enjoy a morning of sunshine and warmth rather than sitting cooped up with me in a hospital room. It was my first time driving a car in at least four weeks—weird!
Having been home for five days now, I think I am beginning to get a feel for my new cadence of energy and rest. It still involves a whole lot of rest, and that’s okay. The change in my chemotherapy timing seems to play a bigger role than I had realized. At home, my daily infusion happens at 9:00 AM; in hospital it was always at 1:00 PM. In the hospital I did not realize how tired I felt immediately after the infusion was complete: being tired in the afternoon just felt like normal after having a fairly energetic morning. At home I don’t have much of a morning: I wake up, get dressed, eat breakfast, and head to the hospital for my infusion. I get back home shortly before noon and am already feeling quite tired. So I eat a quick lunch and take a nap. By the time I wake up, the afternoon is half gone and it seems all I have done is eat, sleep and receive medication.
This I don’t intend as a complaint; I value rest and recovery over productivity and action. It’s more of a recognition of reality. It also means that I may miss more of the 2017 conference season than I expected, as submission deadlines loom and I have not yet managed much time to refine my proposals. So it goes.
Today I call out two things for which I am highly thankful: one small thing and one huge thing.
The small thing is that my infusion has just concluded, and the nurse has “de-accessed” my central port for the first time. This means that when I get home, for the first time in twenty-seven days I will have no intravenous tubes sticking out of any part of my body. I can shower without having to cover those tubes in plastic and tape. Woo-hoo!
I have mentioned the huge thing before, but now I can underscore it with some frightening numbers: I am still alive today thanks to medical research and advancement. The particular form of cancer I have is called Acute Promyelocytic Leukemia, or APL. When it was first categorized as a specific sub-condition of Leukemia, a diagnosis was almost definitely a death sentence: remissions rates were 5-14%, and the median length of survival was 3.5 weeks. My diagnosis came on January 25—exactly 3.5 weeks ago. If not for the advancements in treatment over recent decades, I would have a fifty-fifty chance of already being dead today. Even if still alive, I would have a near-certainty of dying within the next month or two. Instead, thanks to the modern treatments available, today I am well past the highest-risk period. I believe this puts me well above a ninety percent chance of coming through it and avoiding relapse. That’s rather amazing. Thank you, modern medicine!
Fun fact: a major component of my treatment—the use of arsenic trioxide instead of standard chemotherapy drugs—came into use via traditional Chinese medicine. Modern medical researchers in China experimented with arsenic trioxide as a cancer treatment because it played a role in traditional treatments. Through scientific experimentation, the modern doctors refined the ideas from the traditional practices, isolated its effectiveness, and turned my condition from one of the most lethal forms of cancer into one of the most treatable. Thank you, traditional medicine!
Hugs and warm wishes to all. If you also live where where the weather is crazy-beautiful today, please get out and enjoy it.

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212254684789009

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