Update: A weekend pathologist made a mistake and what they thought were leukemia blasts were really just new white blood cells. We did another bone marrow biopsy a week later and they found no leukemia whatsoever. So good news. We were actually able to go home a couple days after I wrote this.
We were so close to being able to go home this week! So close! But alas, it was not to be. After the first round of chemo, we spent the rest of the month waiting for my immune system counts to come back up to an almost normal level. We were days away from being able to go home and live a couple of normal weeks before the stem cell transplant (or a bit of consolidation chemo if needed). However, on Sunday night we were informed that there were traces of leukemia blasts found in my blood work. This was a pretty rough blow after thinking we were about to go home. It means staying in the hospital another month and going through another round of what they call salvage chemo. It will be a different cocktail of drugs to hopefully wipe out leukemia that was resistant to the last chemo regimen.
The good news is that because I’m so healthy right now (and feeling pretty fucking awesome) they decided I could go out on leave for the day today. Even though we have to come back so soon it was incredible to experience the outside world after being here for exactly a month now and looking at another month stuck in the same room. It was glorious to go home. We napped on our bed, which is about 1000X more comfortable that the stupid hospital bed. Also, my wife has been sleeping on a couch in the hospital for a month, so a real bed had to feel like heaven for her. We got to spend the afternoon with our dog. I got to make myself a latte. We went to a restaurant for lunch. It was a proper day.
Part of me on that first night after hearing I had leukemia thought I would never walk out of this hospital. I now realize I had no fucking clue about what my future would look like and of course, I would walk out of this place and feel the fresh cold air of Minnesota on my face again, but that feeling was still an amazing relief today. I have a feeling this second round is gonna work. I’m going to get a stem cell transplant and grow some new bone marrow and this leukemia will never again grow in my body. I know there’s a possibility this won’t be my future but I’m choosing to believe it anyways.
As always, thank you for reading, and for your support. I love you all.
P.S. Our dog might look sad in the above photo but she is a super happy dog. You can follow her on insta @dardarbinksthedog and see all the fun she gets up to.
Written by Matt Gregg, a UI engineer who lives and works in Minneapolis, MN
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