Merry Christmas 2023!

I'm being encouraged to write about this new phase of my life. I'm sure you don't need any more stuff to read or keep track of. But so many of you have expressed your concern and care and interest in what's happening to us. For my own sanity, I think the easiest way to keep each of you updated might be through this medium. If you want to know what's going on, this is the primary way I'll be communicating news and updates, so you'll need to subscribe. If you don't want to, that's also cool, and I'm happy to talk about any or all of it whenever we meet up in person or on the phone. Or not at all. This is our thing, not yours. Although we certainly appreciate the love, concern, and support.

SO, WHAT THE HECK JFLO?

On December 15, I went to my usual annual physical with my primary care physician, Dr. Brown. I was expecting a good bill of health. Yeah, there were a few little things that I wanted to talk with him about, but nothing major, and life was pretty good. The physical went as planned, then at the end of our session, he excused himself for a moment, returning a few minutes later. He said, "You're gonna hate me for this, but I'm referring you to a hematologist." I was like, "Wait, but why?", to which he replied, "I've been watching these white blood cell counts on your labs for the past couple of years, and previously, there was a decent explanation as to why they might be a little elevated; you were just getting over a cold, or you had a bit of bronchitis. But the numbers are much higher this year, and there's no good explanation, so we need to look into it right away."

That was Friday at 4:00pm. The following Monday at 9:00am I walked into the Oncology suite at Prohealth Mukwonago –  The alarm bells started going off in my head. Hold on. Oncology?? I thought I was seeing a hematologist? This can't be good.

After reviewing the prior week's lab results, Dr. Kapke, my "hematonc" (Hematologist+Oncologist) referral got straight to the point. "Based on what I'm seeing in your panels and your Complete Blood Count, I think we're looking at a form of blood cancer. But we need more detail, so I'd like to send you downstairs for a few more blood draws (a few! they must have filled 30 vials!!). And then I'm having my scheduler move some things around to get you in for a bone marrow biopsy as soon as possible. 

Now the klaxon was at full blast in my head. Bone marrow biopsy? What??? I don't feel sick at all!

Wednesday morning December 20, we returned to the hospital for the procedure. I'd be lying if I said I got a good night's sleep the night before. I'm not much for biopsies in general, but everything I'd heard about the bone marrow procedure scared the poop out of me. Literally. I was up three times for nature calls. One of my good friends who's a doctor had told me that with bone marrow biopsies, "the pain is real"...but not to worry, it was short-lived pain. Coming from a doctor, that gave me pause.

As it turned out, the biopsy was worse in my head than it was in real life. Uncomfortable? Yes. Would I want a repeat? No thanks (too bad! I know now that I'll have to have several more over the next months). They told me that because of the upcoming holidays, it would probably be two weeks before we got results from all the blood, marrow, and bone tests. "But", they said, "don't worry too much, if something urgent turns up, we'll give you a call."

We left Wisconsin that same day to begin the long drive for our six-week stay down in Arizona for Christmas and the month of January. We were definitely spooked by the recent events and the whirlwind nature of it all, trying to wrap our heads around all the new information. But I guess when it comes to blood cancers, they don't mess around. It's important to get to the bottom of it before things potentially become dire. 

It took four weeks to get all the test results back. We were anxious, and nervous, and our minds were running away with all the possible implications of what we had just experienced. The uncertainty of it all was unnerving. To make matters worse, all the test results were coming to my email, with notifications landing daily sometimes hourly on my cell phone: "You have a new test result in MyChart. Click here to review." By Christmas, I'd had enough. More than 20 test results had been posted to my account, and each seemed to indicate that something was horrifically wrong with me. I was losing it. I was scared to death, and having a hard time sleeping at night. To make matters worse, Dr Kapke was on family leave, as his wife had just delivered their fourth child right after Christmas, so I wasn't getting any information or reassurance that my worst fears wouldn't become a reality. I was just seeing the raw results. 

Of course, I had zero understanding of what I was reading. Most of the results were Greek to me. Literally. "Possible Myelodysplastic neoplasms" . Those are Greek words. Myelo means "marrow", Dys means "bad" and Plasia means "formation". Neoplasms originates from the Greek words "new formations". So Myelodysplastic neoplasms literally means "new, bad marrow formations". I know that now. I had no clue in December. 

By Christmas, I had turned off all phone notifications and refused the tempation to open test result emails. There was no sense in getting worked up about something I could not understand. Of course it was hard to not talk about it or speculate. Several friends told me they knew people who had blood cancer for years, and were managing it by taking a daily pill. And though nobody was saying it out loud, we'd all heard of people who had developed blood cancer or leukemia and died. 

Then on Christmas Day, I went to my dad's apartment to pick him up for Christmas dinner at my sister's. He was not at the entrance, he didn't answer his phone, and he didn't respond to knocks on his door. I had the apartment super let me into the apartment. We found him semi-conscious and naked on the floor in his bathroom. He had fallen sometime on Christmas eve and could not get himself up. Nothing was broken but he was battling a flu. After four days, the hospital could do nothing more for him, and they needed his bed, so he was discharged to a rehabilitation facility. Even though it had 5-stars on Yahoo, the rehab facility was dirty, dank, and depressing, filled with people who looked to be at death's door. We couldn't leave dad there, so we took him to convalesce at my sister's house. Within two days, his flu became pneumonia, he was declining rapidly. We sensed the end was near, and called 911 to get him back into hospital care. But he coded on the way back to the hospital, and died at around 6pm on New Year's day.

Between all the uncertainty of December's doctor visits, and my father's unexpected fall, decline, and death, our stay in Arizona turned out to be not-so-very-pleasant for us. 

On January 18, we received the final diagnosis from all the tests: CMML-1. The news came in a email: **FINAL DIAGNOSIS** Peripheral Blood: Leukocytosis including monocytosis. Normocytic anemia. Mone marrow: Chronic Myelomonocytic Leukemia-1 with Oncogenetic mutations of U2AF1, ASXL1, CBL, KRAS, and SETBP1.  

So,  Chronic Myelomonocytic Leukemia. It's a rare blood cancer that's diagnosed maybe 10 times in a million. It's different from CML, which is Chronic Myeloid Leukemia; that's the one that is quite common and can be managed and treated via oral medications where people can live for decades with few ill effects. One letter separates the two acronyms. But the diseases are a world apart. CMML is not a good diagnosis. If untreated, a person's life expectancy is maybe 2-3 years. You don't die from the leukemia per se. The leukemia simply robs your blood of all its health-giving efficiencies, and you end up dying of other things like heart failure, or kidney failure, or other organ failure. With my specific genetic mutations, there is a medium-high risk that the "chronic" phase of my condition will transform to an "acute" or "blast" phase, which would likely shorten my life considerably.

January 28 Karla and I left Arizona to return to Wisconsin. Karla needed to get ready for the spring real estate market, I had financial seminars scheduled for the beginning of February, and we had oncology consultations to go to. It was time to figure out what this diagnosis meant, and what we were going to do about it.

And that's it. Turns out I have a rare form of leukemia. Now what?