Day +70

I was hoping I'd have some amazing news of some sort by this week, but it's more of the same for the most part--maybe even a little worse.

My counts have continued to drop even though I'm over a week after completing my first round of chemo (two weeks since starting it). WBC are low enough that I'm on all the extra protective meds, hemoglobin is low enough that I needed a blood transfusion Friday (and I *feel* like I'm low on oxygen), and I've needed THREE platelet transfusions. It's not just the chemo, as the percentage of blasts in my blood have also increased (1%-8%). So this is the return of the leukemia and we need to try to knock it back into remission.

I'd mentioned the possible donor lymphocyte infusion (DLI) before, which would be a three-time "boost" of some immune cells from my donor. The hope (and what often works) is that her immune system would recognize the leukemia as foreign and would attack it. Yesterday I learned that my donor is not available to donate additional cells. They don't know why (Be The Match doesn't give a reason), but at any rate, the DLI is no longer on the table.

I will get another bone marrow biopsy on Friday to see if the first round of Decitabine did anything. I have also, since yesterday, resumed taking the oral chemo (Venetoclax). I'll do at least a cycle (month) of Venetoclax and they'll watch for a response to the chemo (counts rebounding, blasts dropping, etc.). If not, they'll do another biopsy in another month and go from there.

If there is more leukemia even after those cycles of Decitabine and Venetoclax, then we move onto something else. There is a promising clinical trial that uses an antibody against CD47 (which indirectly targets p53), which they are hoping I could get into.

To end on a slightly more positive note, I mentioned my concern yesterday that I had to have platelets three times, two days apart, each time because my count was 9K (really low). Katie said she'd draw a post-infusion lab to make sure that I wasn't developing refractory platelet issues. Basically that would be an immune response to donated platelets. Yesterday my count went up to 52K after my transfusion, so she doesn't (at this time) suspect refractory platelets. (If it were, I'd need to receive platelets much more closely matched to my blood type and HLA to decrease the chance of a reaction.)

And I know most of you saw my post on Facebook, but I will keep posting about blood (and platelet) donation whenever I hear of there being a shortage. Since I started my treatment for leukemia, I have needed 10 units of blood and 16 units of platelets. :(  I don't know when this need will go away (if ever). And I am so indebted to those of you who donate regularly, who started donating since my diagnosis, or who went from sporadic donations to regular donations. You are heroes! And I mean that completely. I literally would not be alive without you (and others like you) donating. If you donate through Versiti Blood Centers, your donation stays local. They have donation sites all over the Midwest. You can sign up online, and I've heard from many people that they are doing an awesome job of being safe in times of COVID. But if you prefer Red Cross, they're also good, and I'm sure there are local centers in other parts of the country/world. I feel like blood donation is a big karmic pool and wherever you give, it results in someone somewhere that you love benefitting, as your donation is benefitting someone somewhere that someone else loves. :)

Life-giving red blood cells

Me, with my third bag of platelets this week

Finally, I've decided to approach my leukemia mentally in a slightly different way. I was already thinking this when Cara responded to the return of my leukemia by texting me, "You are clearly a vicious badass--all of your cells, even the f'ed up ones!" So I acknowledge the badassery of my leukemic cells. They have made it through four different chemo regimens (including one called "myeloablative" which literally means obliterate all the marrow). They keep mutating and making it harder and harder to fight them. I am a strong, otherwise healthy, relatively young woman and they keep winning. So I give them kudos for being this strong. They've proven themselves and I will no longer underestimate them. And now it's time for them to take their first place medal and get the fuck out.