The days just seem to slip away, and now I have eight days of catching up to do in this one update. Fortunately, a lot of that is because things are just chugging along without a lot of changes or surprises. It continues to be boring-in-a-good-way most of the time—but with a few tidbits of mostly good stuff to report.
Along with stopping the arsenic trioxide and all-trans retinoic acid (ATRA) on Wednesday of last week (March 1), I also had my Prednisone dose dropped from 40mg a day to 20. At this point I have no more need for any prednisone, but we’re ramping it down gradually because stopping it suddenly can lead to ugly withdrawal symptoms. I learned that that fatigue is one of those withdrawal symptoms, and that may explain why I was still so tired for a week after stopping the chemotherapy. Just as I stopped having arsenic make me tired, I had a relative lack of prednisone kick in to take its place. The fatigue continued pretty steadily, well into this week.
Last Friday (March 3) was the final submission deadline for the Agile2017 conference. 11 PM local time, to be specific. I spent most of the afternoon and all of the evening working on my submission, which had sat in an early draft state, getting no love for several weeks. I thought I would have time to get at least two proposals in, but just the one wound up taking me nearly until the deadline all by itself.
With less than an hour to go, I had completed a very-imperfect pass over it and put out a request for review help on Twitter and Facebook—not expecting much of a response given the short time frame. Boy, was I wrong. Within minutes I had responses and suggestions from about a half dozen agile-conference friends in three different countries. I managed to get two sets of changes in, and hit the Submit button with less than a minute to spare before the deadline. Whew! I do hope it gets accepted into the conference program, as I am quite excited to craft and run that session. Those readers who are interested and who have Agile Alliance membership log-ins can see it: https://submissions.agilealliance.org/agile2017/sessions/6716.
MAJOR thanks and gratitude to my agile-community peeps who offered to lend me a hand in my hour of need: @heidihelfand @Bendre @meghana27 @ryanripley @gdinwiddie @ItsUnderstood and @cunningleah.
At first I was annoyed that the Agile Alliance put the deadline on a Friday night—don’t people have social lives? Not that I was going out, of course. However, after working on my proposal until exactly 11 PM and then needing a couple hours for the adrenaline to subside before I could sleep, I appreciated that the next morning was a Saturday. I came to regard that Friday night decision as quite wise indeed.
The weekend and early following week went more or less as my recent weeks have gone: lots of sleep and rest; 2-3 miles of walking on the days that weren’t too cold or rainy; enjoying time with family and visiting friends; thinking about doing things such as paying bills or responding to email, but never quite getting to it. It’s always nice to have visitors at the house.
Around Tuesday or Wednesday I think the prednisone-withdrawal fatigue finally began to wear off. I perked up a bit and actually began to get little chores and tasks done rather than just thinking about doing them. This marks the first time since diagnosis that I felt something close to a normal energy and motivation level, which was super nice.
Wednesday (March 8) brought some really, surprisingly-good news. I returned to my oncologist for blood work and a weekly follow-up. He looked genuinely surprised as he read the blood counts, and said something along the lines of “your numbers have jumped surprisingly far for just one week.” This was just eight days since my latest biopsy, and numbers were already into the range that would suggest full or near-full remission of the cancer. We expected that to take two or three weeks! I was well above the threshold for neutropenia, so now I can relax even more about being exposed to people. I am still to avoid sick people and crowded places, but both of those carry less urgency than a week prior.
And so: another bone marrow extraction for biopsy was scheduled for the next day: Thursday, March 9.
Thursday morning we arrived in the procedure room, where the technicians were setting up. When the RN walked in I was delighted to see that it was Kathy—the same one who had done my previous extraction with so little pain. I did not expect her to say what she then said: “Don’t get up on the table. We’re not doing a biopsy after all.” She had just gotten off of a conference call with my oncologist and a few other doctors, to talk about me and my case. If I understood her correctly, the doctors are attending an oncology conference next Wednesday, and they plan to present something which will include my case as an example of this treatment regimen being wildly successful and less disruptive than traditional chemotherapy. Rather than take another biopsy so soon after the last one, they would take a sample of my blood and send it down to Mayo Clinic for molecular analysis.
My doctor had mentioned to me back in the hospital that molecular blood analysis had been shown to be about as good as a biopsy at determining remission of APL. A biopsy was still the accepted standard for that determination, but he expected that in the not-to-distant future the need for a biopsy would be dropped in favor of the blood analysis. I had no idea that I would turn out to be one of the first patients in that future.
That was all pretty darn good news. No bone marrow extraction. Record-breaking recovery of blood counts after ceasing chemo (at least a record among my doctor’s patients). And now I am playing a small part in advancing the state of the art in APL treatment and research. Super, super cool. Three more lucky stars to count and add to my considerable total. I do not know what I did to deserve all these good turns.
Other, non-cancer related goodness this week: Aurora was in one of the school plays at Barton Open School, with shows on Wednesday and Thursday. As a second grader (the youngest class allowed to participate) and as a first-time actor in a school production, she only got to be in the ensemble rather than getting a principal part in the performance. She pretty much nailed it, and had a super-good time both during the shows and during all the practice and rehearsal sessions over the last couple months. Tricia and I were both soooooo, happy to see that. She also loves her singing lessons, which she recently picked up instead of the guitar lessons she had been taking for a couple of months. She’s clearly far more motivated to sing than to strum; and her fingers are still small enough that pressing hard on the frets hurts quite a bit. Not so singing.
This means that there’s now a brand-new acoustic guitar in the house with no one to play it. This might be the perfect excuse for me to pick up an instrument again after several decades off. Until I return to work, and as long as my fatigue levels remain low, I should have plenty of time for lessons and practice. Hmmmmm…
One bit of bad news: I got a horrible night of sleep last night, and felt a little off all day today (Friday the 10th). I hope to make that up tonight.
My final bit of update-y news, also of the good variety, is that after ten years of intending to set up a personal web site and weblog, I finally took the plunge, spent the time, and set one up right here: https://markus.silpala.com/. I also copied over ALL of my cancer updates from Facebook into the blog, so people can simply follow all the Previous and Next links and catch any entries they may have missed. The biggest benefit of a proper blog versus a bunch of public Facebook posts is that interested people can subscribe to the blog’s RSS feed and never miss a new update.
Because this is now my main (and only) blog, it won’t be only a cancer blog. Postings and articles on other topics—notably agile software development—will show up there as well. For those who aren’t in the software field and who only want to read about my journey with leukemia, you can use this link to see only the posts that have the “Cancer” category attached: https://markus.silpala.com/category/cancer/.
Special thanks go to Amitai Schleier, who offered to put all of my existing Facebook updates into a blog of his making, and then provided just the right level of nudging and cajoling to get me to do the work myself (which I wanted to do). Without his contribution I likely would still be procrastinating the creation of a blog and a site.
Those of you who prefer to keep reading my updates on Facebook: fear not. Although this and all future posts will be published first on the blog, I will continue to duplicate them in public FB posts so that people can continue to read, react to and comment on them as you have so far.
Lesson (re)learned tonight: these posts get REALLY long when I let eight days go by between them. It reminds me of how a team that doesn’t do retrospectives often enough winds up having them take hours in order to dive deeply enough into all the material—whereas weekly or even biweekly retrospectives can be fairly brief and still have sufficient depth and breadth. Now that I have the site up and running, I expect I can find time to write an update every day or two now. The last few days have been more about getting the site set up and getting all those existing posts copied over from Facebook. That has been a big part of why I didn’t post an update sooner.
That is all for now. Thank you again and ever so much for your support and encouragement. It means just as much today as it has throughout my diagnosis, hospitalization, release and recovery. Keep it flowing.
With hugs of gratitude,
Cross-posted to: https://www.facebook.com/markus.silpala/posts/10212447308484481