Legalectric

Acute Promyleocytic Leukemia sucks, but as sucky things go, this hasn’t been so bad.

Today we had another confab with the Leukemia “fellow,” Dr. Premji, this one in person down in Rochester. She’s very cool, and we’re impressed. Alan’s been getting the best of care imaginable. He’s in the final “cycle” which will be winding up near month’s end. WHAT A RELIEF!!!

We got a look at what’s next, after finishing this EIGHT MONTH LONG round of daily treatment. It’s on a rotating basis back and forth between one cycle with 2 weeks of IV arsenic (arsenic on weekdays) and oral ATRA everyday and then 2 weeks of arsenic only (on weekdays); and the other cycle of 2 weeks of oral ATRA only and then 2 weeks off both. Eight alternating cycles, beginning in July after his June 23rd discharge, and at long last, the last infusion is February 27. TWENTY FIVE DAYS TO GO!

After treatment ends, Dr. Premji said it would be a few months until Alan’s immune system builds up after this extreme treatment, so probably June, but with COVID running rampant again, it’s a good time to be masking and isolating.

Platelets always go down a bit during an arsenic cycle, so no worries, they’ll bounce back! And what an improvement after that initial level of NINE (9) on admission. That rather freaked the doctors out! He’s been in remission since some time in that first blue spike “induction” phase ended, technically in remission on discharge June 23. Outpatient, it’s the “consolidation” phase (no idea why it’s called that), and it’s soon completed.

We’re still waiting on this month’s PML/RARa, should be back in a few days, but here’s verification of the good news, the nasty cells are down to ZERO and have been since early on:

After our March visit, he’ll be scheduled for a visit every 3 months. She said he’s been doing exceptionally well, far better than most, with almost no side effects, mindful that this is not chemo. It’s “treatment,” and always the APL treatment side effects of this are less, not at all debilitating or even uncomfortable, just some weird stuff, occasional headaches, skin falling off!!! We’ve only had one real bump in the road, pneumonia in October, with quick recovery. WHEW!

And after getting back from Rochester, another arsenic infusion today in Red Wing… Can’t wait until we’re done with these Rochester treks, and constant appointments here too, though now at least we know where we’re going in the Rochester tunnels, elevators, and we have quite a few “get out of jail free” cards for the parking lot. Red Wing always takes a long time to get the infusions going, but at least he can get them done here, that helps a lot.

Alan said he’d like another picnic at the Gonda building entrance…

He had to see his doggy, and Mayo wouldn’t let Sadie in, so when weather was good, we had an Indian feast at the door — veggie korma and palak paneer, pakora with lots of coriander chutney, and garlic naan of course. Frankly, that month-plus in the hospital was a rough time I’d rather not relive!

Yup, I’m counting the days until this is OVER! Last arsenic dose, arsenic and ATRA treatment ENDS on February 27th. Another bone marrow biopsy a week later, and meet for our “exit interview” after that.

TWENTY FIVE DAYS TO GO!!!

When folks around you are mired in QAnon, conspiracies, lies, what to do? I’ve come around to thinking that what’s needed is intervention, and treatment and/or deprogramming, as with cults, or in 12 Step chemical dependency models.

After this last week, each of us should be asking this question and grappling with action.

From Psychology Today:

Part 1 – The Psychological Needs That QAnon Feeds – What to do when someone you love becomes obsessed with QAnon

+++++++++++++++++++++++++++++++++

Part 2 – How Far Down the QAnon Rabbit Hole Did Your Loved One Fall? What to do when someone you love becomes obsessed with QAnon

+++++++++++++++++++++++++++++++++

Part 3 – 4 Keys to Help Someone Climb Out of the QAnon Rabbit Hole – What to do when someone you love becomes obsessed with QAnon

This is a little too “psych lite” for me, but in talking about intervention, there is this, which makes sense:

Another form of psychotherapy that could be applied to conspiracy theory beliefs is cognitive behavioral therapy (CBT), which is designed to challenge “cognitive distortions” and false beliefs by looking at evidence to disconfirm them.

From the article, a reading list:

• How to talk to conspiracy theorists—and still be kind” by the moderators of the Reddit r/ChangeMyView subforum.

• My father, the QAnon conspiracy theorist” by Reed Ryley Grable.

• Escaping the Rabbit Hole: How to Debunk Conspiracy Theories Using Facts, Logic, and Respect by Mick West.

• Freedom of Mind: Helping Loved Ones Leave Controlling People, Cults and Beliefs and The Cult of Trump by ex-cult member turned cult expert and counselor Steven Hassan.

David Neiwert’s forthcoming book Red Pill, Blue Pill: How to Counteract the Conspiracy Theories That Are Killing Us also looks to be a worthwhile read.