February 27, 2017 – Second Update

Sadly, a setback.

After the full blood results came back, it turned out that the combination of my White Blood Count and my Absolute Neutrophil Count places me back into “neutropenic” status. This means that my immune system is, once again, very weak. My chemotherapy infusion was cancelled for the day in the hope that a break from arsenic will allow my counts to recover. We came straight home after getting that news.

When I was neutropenic during my first week in the hospital, it placed severe restrictions onto me to protect against any infections that might be around. I had to stay in my room with the door closed; the room had positive pressure so all air flowed out and none flowed in from the hallway. No one with any cold symptoms was allowed to visit me (including Aurora and Audrey—for a week!). Even nurses and healthy visitors had to wear surgical masks and leave their coats in the hall as a protective precaution. I could not receive flowers, balloons, or fresh fruit in case they harbored any viruses or bacteria.

This time around I am at home, where we don’t have a room with positive air pressure and medical-grade air filtration. I share spaces with the girls and with the cats. We also don’t have a nursing staff to check on me several times a day. Given how stringent the hospital restrictions were, both Tricia and I find it a bit discomfiting to have me back in this vulnerable state while at home. We find it particularly scary because, as I mentioned the other day, secondary infections are the main source of serious complications in the later stages of Acute Promyelocytic Leukemia treatment.

So: I’m getting ready to really hunker down for a few days. Tricia has just changed all the sheets on our bed. I am staying mostly in the bedroom, with the door closed, air filter running, and no cats present. When I leave the room I wear my N95 mask to keep out any contagions which might be lingering in the air. No kisses and minimal hugs between the girls and me for a while, and if either of them catches a cold I will avoid being in the same room with them. 🙁

This afternoon, Audrey has a goal-setting conference at school, which includes student, teacher, and both parents. Rather than attending in person as usual, I will attend from my room by video conference. Thank you, modern technology!

There is one mitigating factor to make this less frightening: those super-stringent hospital rules were stringent BECAUSE it’s a hospital. Sick people abound, and every day the building has at least a few cases of really nasty contagions present. A typical home has a far tamer set of infections in the air and on the surfaces; isolation measures can be a bit more relaxed without actually increasing the risk of disease.

Still scary, though.

The silver lining on this development: being confined to the bedroom will make it really easy for me to catch up on the sleep that I gave up for AgileIndy last night. 🙂

Hugs all around,

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212328547075520

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