February 26, 2017

Several days of no updates now. Looks like the morning infusion slot isn’t working out quite so well after all. Here’s a bit of catch-up.

During the week I made good use of the crazy-warm weather we had in Minnesota, and walked 2-3 miles each day.  That felt really good. In the same timeframe my malaise seems to have settled down a bunch—double-good! This leads me to suspect that exercise, specifically the lack thereof, was a bigger contributor than the arsenic trioxide. Given that I can control my exercise and not my treatment regimen, this was a nice realization.

I also learned that, after all those sedentary weeks in the hospital, I have lost the ability to do some pretty basic things, such as running. When I tried to take just a couple quick steps to catch the walk signal at a crosswalk, I nearly fell down on my face. Yikes. It’s also very hard now to go up a step which is more than about eight inches high. So, even though I could probably ride my Airwheel or a bicycle, doing so would be a bit risky: I would have no way to catch myself if I lost my balance. That’s a pretty sobering realization. Looks like I have a lot of work to do this spring to get myself back into some semblance of fitness. One of my first techniques: while the girls play on the playground at Barton Open School, I walk repeatedly up and down the levels of the school’s little outdoor amphitheater. Boy, do I feel that in my muscles the next day.

A little downer related to that is that some minor infections have managed to get into my system: a tiny bit of sore throat, a sore on my lower lip, and a really weird sore inside one of my eyelids. That last one is by far the most irritating; all the others seem to have cleared up on their own after a few days, but that eye is still quite unhappy. At first I had thought it was a stye, but today a doctor looked at it (convenient that I’m in the hospital daily for my arsenic infusion!), and deemed it to be an infection of some sort. I see antibiotic eye drops in my immediate future.

Friday I had my first visit to the oncology clinic for post-discharge follow-up. The news there was good: based on the blood counts, I am likely at or near remission. The next step is to get a fresh bone marrow biopsy to find out for sure. That happens on Tuesday morning. We should get the results on Wednesday or Thursday. If all is well, then my infusion schedule drops from seven days a week to five, and I get to take two-week break from it every two weeks. That level of treatment goes on for six cycles: twenty-four weeks. Fingers crossed that the biopsy comes back as hoped. Today’s infusion of arsenic trioxide will be my 32nd. That’s exactly the median time to remission from the study upon which my treatment regimen in based.

Today Aurora and Audrey came along for my infusion, and had a blast playing with the bed and seeing nurse Melanie again. Nurse Mary Ann also got in on the act as well, and taught the girls how to use a stethoscope to listen to their bodies “making poop.” For a seven- and a five-year-old it doesn’t get much more entertaining than that!

On the home front, I have continued to need and take a lot of rest. Our community has also continued to show love and support in myriad ways, for which we remain deeply thankful. We have enjoyed getting visitors to the house. Thank you, thank you, thank you!

More causes for thankfulness: with my daily infusions I get my vital signs measured: body temperature, blood pressure, heart rate and blood oxygen level. All of those have been 100% good, every single day. Given my low white blood counts, I particularly like having no signs of fever.

Today’s infusion has just begun. Now I’m going to get this update posted and see about catching a little nap until it completes.

Hugs and warm thoughts,

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212319346085501

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