Life with Mikey, 7

Short story:

Continue to reduce prednisone; second infusion of Rituxan (rituximab) was uneventful. Energy levels continue to increase (slightly) but it’s easy to over-do. Taste buds still AWOL.

Long story:

Had a bit of a scare the week after the first Rituxan treatment. Within a 48 hour period, I developed new mouth sores that made it very hard to eat. We went in to see Dr. O on March 8. He determined that the sores were not pemphigus but probably something taking advantage of the suppressed immune system (such as canker sores) so not too worry and to treat with Abreva. Sure enough, two days later they were gone, almost as quickly as they had arrived.

Monday’s Rituxan treatment was a non-event, relative to the first. Based on the recommendation of our first nurse (Kimberly), the plan was to double the dose of Benadryl and Tylenol #3 at the beginning. I don’t think it was 5 minutes after the Benadryl went into the IV that I felt light-headed and moved the recliner to the full horizontal position (something I never did with round one).

I stayed in a permanent state of drowsy, coming up for air every 30 minutes for vitals check. The only irregularity – both treatments – was a tendency for my blood oxygen (SO2) levels to drop down to 92-93%. A few deep breaths and it comes back up above 95%. No known pulmonary issues, but anything is possible when the immune system is suppressed.

Jesse dropped in for a visit towards the end of the treatment. Had a nice chat. Learned that Jayden has picked Garfield High School for the fall: that’s an hour bus ride each way!

So now we wait … to see at what level (if any) of prednisone pemphigus shows itself again.

We saw Dr O on the 14th, and he dropped Prednisone to 40 mg. Our Iranian resident, Suzanne, beamed when she heard the report/saw progress. (It was Suzanne who said, almost seven weeks ago, “eat ice cream!” And yes, I’ve gained back the weight I lost, it’s just not in the right places on my body.)

We see Dr O again on March 28; the goal is to again reduce the prednisone. No clear picture for when our visits to Dr. O will become less frequent.

All of the old sores remain “visible” as discoloration. My cheeks are less rosy than they were, but they are still rosy. Supposedly, all will fade in time, but no one has suggested how long that “time” might be.


Although I can chew, my taste buds are still on leave. We had a brief glimmer of hope when Kathy made french toast two weekends back: I was able to taste the orange zest (she also included orange blossom honey). Salt is the only thing I can taste consistently, but I can discern texture differences. We’ve not seen this listed anywhere as a side-effect.

Kathy has made the beef from our February cooking class: twice. The first time was with chuck roast; however, she turned it into stew because she cooked it too long in the slow cooker. (In other words, it fell to pieces.) The second time, she used brisket after finding some at Central Market. Jay and Kathy say it is very good but not an “eat the same day” meal. In other words, flavors improve after a day or two in the fridge.

Jay and I are making progress on the townhouse … annoyingly slow as it is. Most of what remains are finishing touches on bigger repairs. Installing the pedestal sink in the master bedroom; installing baseboards in the two bathrooms upstairs; painting.

We are also running quite the auto-repair shop. We’ve performed a complete tune-up on the red truck, including transmission fluid change. There continue to be a few things I want to figure out but it should continue getting her to work until the other project makes it way back to the top of the to do list. Getting the transmission fluid level to an acceptable level will complete the white truck’s transmission fluid change, which it appears I get to do between rain drops. The regulator to fix Jay’s Jeep’s passenger door window issue arrived the other day. Still get to figure out why Kathy’s TransAlp doesn’t want to start, however.

If it’s not clear, I do have more energy. And I’m sleeping better. But it’s deceptively easy to over-do … which is obvious in hindsight when I sleep until 9 or 10 am the next day.

Jay, Kathy and I went to see “Get Out” on Sunday the 12th. (Recommended: social commentary + “horror” in the Hitchcock/psychological sense). We are enjoying the “big movie theatre” upgrades. It’s not quite as special as going to Redmond for iPic (no restaurant food or alcohol or blankies or chair-side service) but … big, comfy, reclining reserved seats are quite nice. Which reminds me: I can drink water now without bloating!

Jay went to Boise to surprise Greg for his birthday Thursday. We’re going to Jim Horton’s tonight for movie night. And we’ve started watching Amazon’s “Man in the High Castle” series. However, due to the additional immune suppression from the Rituxan, I’m withdrawing from playing pool on Thursday nights. This is an indefinite postponement but a temporary one.

Spring is around the corner, at least according to the calendar. We feel like we’re living 40-days-and-40-nights of rain, however. February was the second wettest on record. We did get a glimpse of the sun Thursday, but the rain was back on Friday. Definitely webbed feet this year!


Thanks for listening

Kathy, Katie & Michael

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