It’s been a weird 24-hours. An anxious 24-hours, honestly. But things aren’t
as bad as they seemed yesterday.

With R starting a new drug trial (medical study) next week, a series of tests were ordered to establish a baseline so they can determine if the drug is helping or not. R got MORE blood work and went in for an MRI of his torso.

First, his spleen has gotten even more enormous. In September 2023, his spleen volume was 1400 ml. The average spleen volume is around 240 ml; a “massive spleen” is defined as 1004 ml or larger. R’s spleen now has a volume of 2,232. Wow. No wonder the guy feels full most of the time. His spleen is squishing the space in his stomach. Reminder: doctors discourage spleen removal (splenectomy) in patients with myelofibrosis because of the increased potential for excessive bleeding, formation of blood clots, infections and even mortality. If the new drug works, it will shrink the spleen. Fingers crossed!

Now, onto the most nerve-wracking part of this story.

The MRI report said that R has chronic myelogenous leukemia (CML) with “nodes” (aka potential tumors) throughout his spleen. We were shocked. He has myelofibrosis AND leukemia? We know that patients can have myelofibrosis that transitions to acute myeloid leukemia (AML), but this said R has CML. It’s part of the leukemia family and much less severe than AML, but still leukemia nonetheless.

What the hell?

We spoke to someone on his team today to get more information. It turns out that when the MRI was ordered, it was ordered with a diagnosis code for CML. The radiologist’s findings correlated with CML because that’s what the paperwork said. It was a mistake! If the MRI order had been written with a diagnosis code of primary myelofibrosis (PMF), the radiologist’s conclusions would have been different.

So, the radiologist is re-writing the report now that he knows R’s correct diagnosis.

On the one hand, I am angry they put us through this. On the other hand, R does not have CML. Hooray! It’s bad enough that he has PMF without adding another type of cancer on top of it.

R’s doctor is optimistic the new drug will prolong the time R feels good, extending the time before a stem cell transplant is needed.

We’ve got travel plans on the horizon. R went skiing several times this winter–one of his favorite activities. He’s working on his fancy Firebird and preparing for a lovely spring/summer garden.

R is alright! He’s in great spirits. He has always been a role model for everyone in his orbit, but even more so now. How’d I get so lucky? How’d we all get so lucky?