Marilyn’s Quilt

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!


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!

There goes Alan off to Rochester, lights on, sirens blaring

Well this was quite a surprise. Alan was feeling tired for a couple of weeks and had a pretty large bruise on upper hip, to over a couple days larges bruises all over, and OMFD, it’s Acute Promyelocytic Leukemia. I’d had an inkling of CLL after taking photos of the bruises to send to Mayo here in RW, and hitting google, so I was pushing him hard to get in fast, and thankfully he did. Platelets were alarmingly low from Nurse Practitioner’s rather wide-eyed response, which was to get us to the ER, STAT. We were there most of the day, and then after 2nd big batch of lab results came in, he was rushed to Mayo about 4:30. He’ll be at Mayo now for 3-4 weeks, started chemo immediately, and platelets, as his were nearly zero.

Despite 2nd shift, they were on it right away, the nurses and aids were very attentive, and the Nurse Practitioner on that evening was so articulate about what’s going on. Treatment plan is to start aggressively, pretty much as explained in the link below, and see what happens.

Alan’s just getting settled in, and he’s not sure if he wants visitors yet — feel free to message him or text or call.

Treatment of Acute Promyelocytic Leukemia

It seems APL hits middle-aged folks with average age in the 40s, but for seniors it’s the leukemia of choice. The standard treatment before this regimen (Mayo has links to various study’s participant recruitment!) had some long-term side effects, and apparently this is better. I was wondering about treating with arsenic, remembering Kady who was treated for heartworm with arsenic and lost her marbles, and I’ve asked a few vets about long term impacts of arsenic and neither I’ve asked knew anything about it, and google knows nothing. Alan’s deemed “low risk” because it was caught fairly soon and his white blood count is below the “10k” magic number.

I’d learned some about leukemia when dealing with magnetic fields associated with transmission lines, argued need for regulatory action before the appellate court 20 years ago, but no, earlier bad decision affirmed… And I’ve long known of cancer clusters, and the increases in childhood leukemia in certain scenarios. Environmental impacts have long been ignored, and causation, that ephemeral target, has not yet been established for so many likely agents responsible.

Delaware is a waste dump of the U.S., polluted in so many ways, and Alan’s horror stories make me wonder why anyone wold live there. I’ve thought about Alan’s cancer risk having lived next to 3 nuclear reactors…

… probably downwind of TMI, and for sure downwind from the Delaware refinery that spews all over everyone in Delaware City, Port Penn, and beyond. Somebody asked, “Who’s Alan?” Just google Green Delaware! For decades Alan worked to improve Delaware, from exposing the ractice of dumping raw sewage into the Brandywine River, and being arrested for putting a “Danger Raw Sewage” sign at the outflow:


Busted again at the legislature when public participation was prohibited — with John Kowalko, later STATE REP. John Kowalko, who just retired:


And then in 2007 starting work against Minnesota incinerators, when he got a call out of the blue from someone in St. Paul wanting help on the Rock Tenn incinerator. He’d worked for DuPont as consultant, and part of that was worldwide promotion of incinerators, and he learned a LOT about what incinerators inflicted on those breathing nearby. The call from St. Paul came in when I was out there on my 2nd trip to Port Penn, and they’d wanted him to come out for a Neighbors Against the Burner gathering on the date we’d planned to get back to Red Wing, all just too coincidental! That was the start of a long collaboration with Neighbors Against the Burner and challenging Rock Tenn, the E. Phillips “Eco-Crapper” burner later tried in Rockford and stopped there too; expansion of HERC, and pushing to shut down City of Red Wing’s incinerator, now closed:


So back to Acute Promyelocytic Leukemia — need to get on the road. Suffice it to say, I’ve started on my “research.” Don’t cringe, beyond google, DOH! Years back when I was doing radio, I’d done a program. on bendictin, and another on DES, which was used with wild abandon and without informed consent on Native women. I was working at HCMC and using their medical library a LOT, and in the short time I worked at Bone Marrow Transplant I learned a lot I didn’t really want to know, that was a difficult station with so many babies and young children… I also am well aware that much has changed over the last 40 years, so there’s a lot of reading and evaluating to do to catch up.

A few available things, hope to tap into some deeper sources, but these are interesting:

Outcome of older (≥70 years) APL patients frontline treated with or without arsenic trioxide—an International Collaborative Study

An effective and chemotherapy-free strategy of all-trans retinoic acid and arsenic trioxide for acute promyelocytic leukemia in all risk groups (APL15 trial)

A scoring system for AML patients aged 70 years or older, eligible for intensive chemotherapy: a study based on a large European data set using the DATAML, SAL, and PETHEMA registries

Management of acute promyelocytic leukemia: updated recommendations from an expert panel of the European LeukemiaNet

How retinoic acid and arsenic transformed acute promyelocytic leukemia therapy


April 5th, 2020

Results came in a couple days ago. NEGATIVE! For now… but the sinus crap is lingering on, and on, and on… that is SO frustrating.

Rx: Continued isolation, RARE trips out for essential stuff, and wait it out.

Times like this, I’m glad to work from home, though I miss the trips to meet with clients!