Above is a quilt made and gifted by Marilyn Tkachuk, intensely detailed, easily hundreds of hours of work. Just WOW. Marilyn and Tilton have been in to visit, and Marilyn’s been there, has been to Rochester lately for testing, and knows too well how life-changing a cancer diagnosis, chemo, and this “new normal” can be. Her support means so much… Thank you all for inquiries, visits, calls, and care packages, he appreciates that y’all are thinking of him. I’ll keep “updates” on the calendar so you’ll have some idea what’s going on. Lately, it’s just more of the same, B-O-R-I-N-G! But that’s good news in hematology!

Alan’s still in Mayo, Methodist campus, Eisenberg 9-416 (3rd room so far). If you’d like to visit, do give him a call to check his schedule, he’s in and out, poked and prodded often every day. (302) 299-8638.

Alan’s stabilized, doing well, Drs. say “you’re doing better than expected” and yet needs to be in another 3 weeks before he’s discharged. After discharge, there’s DAILY chemo for SEVEN MONTHS, alternating months between a month of oral ATRA (vitamin A derivative) and a month of IV arsenic(yes, that arsenic) at some Mayo facility, and hopefully NOT Rochester (that’s a 3,000 mile a month journey). Back and forth, month ATRA, month arsenic, seven months, so likely through January, into February? I hope by Alan’s birthday it’ll be “Happy Birthday to you, you’re done with CHEM-O.” Until then, onward with treatment and figuring out what life will be like going forward.

Platelet count has been a major concern, that was the trigger that caught our attention, because low platelet count means bleeding, and suddenly he was covered in bruises. Bleeding can start spontaneously or with a bump, and doesn’t clot. A fall can be deadly. When he was in the clinic, and then the ER, he had a platelet count of 9. Yes, NINE! They were popping their eyeballs in shock, got him in the ER stat, and they wouldn’t even let me drive him to Rochester, hence an ambulance with lights and siren.

He’s got a PICC line in now, getting regular platelet infusions, and it seems to be a peak and trough, with peak raising it, and trough then not so low, another peak, and then not as low, so he’s above the crisis point, but no where near normal, more like half of normal, but not NINE! They want to keep platelets over 50. Bruising is fading, and no new ones, so PROGRESS is visible.

White blood count is an issue too, as we’ve been told that what’s happening is that his white blood cells aren’t “maturing” and with the chemo, they’re being released when not read due to the chemo, and too many too soon triggers, or is, differentiation syndrome:

That means there’s a balance of quick release that signals the release of the deadly stuff, too many WBCs v. keeping them in, keeping it low, so there’s daily testing and monitoring, and adjusting the teeter-totter.

You can see the sharp peak exactly 2 weeks after starting treatment, and, whew, then a sharp drop, lowering, I think, to where it should be.

Fibrinogen is also an issue, but that seems stable:

I’m posting these updates, trying for weekly, but missed last week’s (!), because there aren’t enough hours in the day. It’s hard to explain the details over and over, so these updates are the nutshell. It’s a steep learning curve with so many variables, and IT’S SUCH LONG TREATMENT. We’ve been told that 90% get through this “induction” phase, which is the hospitalization and stabilization, and it seems he’s in that 90%. They’re constantly monitoring him, sucking blood out of him like the Minnesota State Bird.

The new normal is a new part-time to full-time job, taking up even more head space than actual time doing all that needs to be done, an extremely high band-width endeavor on this end, and I’d guess even more so for Alan, though he’s bored shit-less there, spending a lot of time at the hospital library now that he can roam the halls. TV is against his religion, though I hope he got to see what reporting there was of Trump’s arraignment.

We’ve had a picnic with Sadie, because he SO misses his dog (plus there’s real food in Rochester, in RW, there’s little to choose from), and need to do another soon:

Sadie never smiles, but look how happy she is to see Alan!

Onward…

He has managed to find an attorney to sign up, and in Florida, they can’t withdraw if they don’t get paid (see ALL CAPS at bottom):

Love it when this happens — and it’s been a LONG wait. 49 pages, 39 felonies! What joy!

UPDATE: BACK TO 5 BARS OF SIGNAL! YES!!

There’s a water tower full of antennae at the top of our West bluff. Does the bluff have a name?

Yesterday, I checked with T-Mobile about the non-existent signal and dropping of calls. T-Mobile said then that for two days, there’s been no power to their antennae and they’re waiting for Xcel Energy to connect it! Today, I checked again, and there still is no power to the antenna.

Nothing shows in the Xcel outage map!

This affects thousands. GET WITH IT, XCEL!

To report outage to Xcel Energy: 800-895-4999

POWER THE TOWER!

UPDATE: It’s been two weeks now. Alan is settled into room 9-415 in Eisenberg in Mayo’s Methodist campus . He’s still short on platelets and getting a refrigerated batch right now. He IS feeling MUCH better, no longer utterly worn down, no longer bruising all over and the earlier bruises are slowly fading away. Not long ago, Acute Promyelocytic Leukemia was a death sentence, and no longer. Things have changed in leukemia world, and the medical care at Mayo is top notch. I’m particularly impressed with the nurses who are ON this, with multiple infusions going, platelets, arsenic, and antibiotics. As of yesterday (?) antibiotics are done and his hand is healing, almost done, no longer infected.

And yes, arsenic. He’s on half doses and that will be increasing sometime next week. For APL, the treatment that apparently works is ATRA, which is a Vitamin A derivative (weird, huh?), and arsenic (even weirder!). I’d wondered about treating dog’s heartworm with arsenic, particularly when our Kady-Kate lost her marbles and spent her days staring into space, but I’d checked with three vets and none knew anything about potential of impact of arsenic on cognition. We’ll see!

Anyway, Alan’s doing well, now has a PIC line, making the infusions easier, and they’d said in particular they want it in for arsenic infusions. OK, whatever, here we go! He’s up and about, making regular trips to the hospital library down in the basement, bringing back a load of books each time, and it looks like I’m going to have to bring in a bookshelf!

Since he can go hang out downstairs in the library for an hour or more, I’m trying to finagle a picnic with Little Sadie. Alan really misses his doggie, and there’s a good driveway where we could do a pick-up!