Day -1

Today's word is "sisu."

Growing up in Northern Wisconsin, there was some good natured Finnish vs. Italian ribbing. My dad was a big believer in the superiority of the Finns and I grew up with the word "sisu" tossed around a lot. I recently re-stumbled upon it and thought it applied pretty well to my situation. I'm not saying I'm any more determined than anyone else facing a similar obstacle, but I think my inner sisu helps me keep going through this marathon-like slog.

Today was my "day of rest" between myeloablative chemo and transplant.

This morning my orthostatic blood pressures were "positive," which, despite the term, is actually not a good thing. It means that my BP dropped when I moved from lying down to standing. The most likely reason for this is that I'm somewhat dehydrated. I believe it, as I'd been drinking less due to the underlying nausea and the fact that I so desperately wanted to sleep through the night last night and didn't want to have to get up to pee! I made a big effort to be more aware of my liquid intake today, and my blood pressure went up (and the queasiness went down) throughout the day, so I guess it was worth the fluid forcing.

I started the anti-rejection med tacrolimus. Dr. Longo gave me a long explanation of the history of transplant meds (which was great). I'll be on tacrolimus for awhile, and it's the med that is titrated at least every 3 days to ensure that the correct levels are maintained in my body, depending on my metabolism. Unfortunately, these labs cannot be drawn from my PICC line, so I'll end up with a whole bunch of pokes for tacro labs. Ick. It is given as an IV infusion initially (over two hours), but will switch over to an oral med before I'm released.

And after tomorrow's transplant, I'll have four more chemos--the anti-rejection chemo methotrexate (I knew I wasn't done with chemo entirely--wasn't thinking about methotrexate being chemo!). Methotrexate is used as a primary chemo in some cancers, including ALL. It used to be used weekly for the first 100 days after BMTs, but research showed that four doses of metho followed by a period of cyclosporine provided as effective of protection against graft-vs-host-disease as did continued methotrexate, and with fewer side effects (including development of additional cancers). Tacrolimus has since replaced cyclosporine, again due to fewer side effects and better efficacy. I'll get the methotrexate on days +1, +3, +6 & +11, but they are just an IV push--not an infusion--so should be quick.

I realize I have mostly skimmed over graft vs. host disease (GVHD), but it's probably worth mentioning in a little greater detail now.

Essentially, you can by the name that the graft (my stem cell transplant) may compete with the host ("me") and cause disease. The way it works depends on the immune system, but specifically the T-cells, which are white blood cells that specialize in the thymus to directly attack specific invaders. (B-cells, on the other hand, don't interact directly, but produce antibodies against invaders.)

GVHD can be acute (short-lived, early) or chronic (permanent), which used to be divided, depending on whether they appear in the first 100 days post-transplant or later. But there is also thought that they occur along a continuum. The way it was explained to me by one of the nurses is that we want a little bit of GVHD, because that will keep any future leukemic recurrence in check, seeing them as "foreign." People who have some GVHD have lower relapse rates. (Remind me of that when I am complaining about GVHD side effects, please!) I'm often an all-or-nothing kind of person, so it's going to be difficult to go for that happy medium, too.

GVHD occurs when the T-cells from the donor react to antigens in the host (me) which are different. T-cells recognize antigen and then amplify T-cells to "attack" the foreign invader. Part of that attack is carried out by proteins called cytokines. (If you're following the COVID-19 hospitalizations, that cytokine storm was causing all sorts of issues in the lungs, because cytokines call in the back-ups and flood the area with things that cause inflammation, which can permanently damage tissues, like the lungs in COVID-19). I was told that all the major histocompatibility complexes match with my donor, but there is "minor incompatibility." I'm not sure how big of a deal that is, or what it will manifest as, but it's what I've been told.

Immunosuppressants such as tacrolimus and methotrexate interrupt the T-cell proliferation stage, which in turn decreases the calling of the cytokines and the associated issues caused by them. This is why the chemo leading up to this, and tomorrow's actual transplant are the more minor parts of my stay. Grafting the donor cells and dealing with GVHD and that fallout will be the bigger things. (Plus remaining in remission after donation, but I'm not going there yet!)

All this is to say that there is a plan and I understand it, and I like having a plan I understand.

Finally, today is also a day of Sisu because Dr. Longo told me about his lovely Finnish daughter-in-law. I can't help but think that's a plus--that Finnish connection. :)