Wednesday, May 6, 2020

Day +1

I woke up today feeling pretty proud of myself that I'd been here in the hospital for a week and it didn't seem that bad.  Only a few minutes later, though, I realized that I was at the very beginning of the plus days (post-transplant) and that I have a long way ahead of me. Still, I am on the positive side!

Unfortunately I didn't get the good night's sleep I'd hoped for last night. Yesterday was my last day of steroids, so I was up until they drew labs at midnight. I planned to then sleep well, but something was up with my infusion pump and it kept alarming about every 45 minutes all morning. So I'd just fall asleep and would be woken up and have to wait for my nurse to shake the bubbles out of my line. Then I'd fall asleep and it would all happen again.

After a week of my blood counts doing "well," the chemo has started to work (hooray!), and my counts are dropping. This is expected and the timing is correct. Chemo kills fast-growing cells, but the impact isn't immediate, so those 5 days of chemo stopped things and now the counts show it. It'll take (best guess) at least fourteen days before my new marrow starts producing and my counts begin their climb back up. White blood cells (including neutrophils) are the first to rebound, followed by platelets and then red blood cells. I can get platelet and RBC transfusions (in hospital and as an outpatient), but not WBC transfusions, so there's no breaking me out until I am no longer neutropenic.

Dr. Shaw (the hematologist/oncologist whose week it is to round now) talked to me a bit more about what it means that my donation was marrow and not peripheral stem cells. Because peripheral stem cells are further differentiated, they will usually graft into the new host more quickly and get to work producing the new cells. This usually begins around day 11. After a few days of the WBCs continuing to increase and to get above neutropenic levels (ANC > 1.0), going home becomes a possibility. But with me getting marrow, the soonest I could expect any signs of increasing blood cell production is about day 14--and possibly not for weeks later. Dr. Shaw said it's a good trade-off, however. Using marrow instead of peripheral stem cells often decreases the intensity of GVHD, and given that my donor has some characteristics that might indicate more severe GVHD (not related, female, not perfect match on minor HLAs, etc.), it's worth putting in more at the start. So I will try to be patient!

My counts, from days -6 (hospital admission) to +1 (today):

WBC (normal 3.9-11.2): 1.3, 1.8, 1.6, 1.9, 1.9, 1.3, 0.8, 0.5
ANC (normal 1.9-7.8 Neutropenic if <1.0): 0.31, 0.40, 1.10, 1.57, 1.67 (artificial), 1.26, 0.75, 0.47
HGB (normal 11.3-15.1; transfusion at 7.0): 10.7, 9.5, 9.2, 9.0, 9.2, 9.4, 9.6, 8.2
PLT (normal 165-366; transfusion at 10): 82, 76, 59, 57, 53, 50, 40, 28

In addition my magnesium dropped to 1.7, so I was supplemented via IV this morning.

Other medical activities included a peripheral poke to check Tacro levels (need to 5-10; mine were 7) and my first of four methotrexate pushes (anti-rejection). I'm done with taking oral Keppra (anti-seizure), and have added oral fluconazole back (anti-fungal).

My appetite was good today and I ate well, napped some, walked and biked, and had a pretty low key day in general. I have some small issues that may or may not be due to any of the meds or transplant, including a slightly different neuropathy where my fingers and toes feel a little like when you slice jalapeños and your fingers burn a little. It's not constant, though. I have that nagging headache that I call a chemo headache which is more like an infusion headache, I think, due to all the fluids pumped into me. My drop in hemoglobin means I feel more tired and walking ten laps isn't as easy as it was the first few days. I also have to take the IV pole with me on walks and that makes it harder and clunkier (and my Apple Watch doesn't count the steps!). But all in all, I'm feeling pretty good and glad that I'm not in pain at this point. I'll try to continue to update each day, but it's my hope that the days won't be all that unique going forward, so I might not blog as much.

3 comments:

  1. You continue to amaze me!!! Where do you get that energy!!🙏

    ReplyDelete
  2. Good to hear your progress. Hang in there!

    ReplyDelete
  3. Sounds like all is going as expected. Keep up the spirits and take naps!!!

    ReplyDelete