Those of you who followed along while Clara was sick know that there's not a scientific or mathematical bone in my body, but I try really hard to learn all the medical jargon and understand what we're doing here. I ask lots of questions, I take lots of notes, I track things.... I think it makes a huge difference in being able to advocate and make smart decisions. So, let me be clear that when I say this is "Chemo Regimen for Dummies," I am the dummy here. But I'll do my best to explain what I'm getting and why because it's kinda interesting, even if Arts and Humanities will always be better than Math and Science.
I am receiving what is generally considered the standard induction regimen for Acute Myeloid Leukemia: "7 + 3"
7 - Seven consecutive days of cytarabine via continuous infusion 24/7 IV
3 - Three days of an IV drug called daunorubicin
(also IV, but it's once a day and pushed over about twenty minutes, not continuous.)
"This breakthrough combination and schedule of drugs for AML, widely known as the “7 and 3” regimen, dramatically changed the prognosis of patients, has remained the backbone of standard therapy for close to five decades, and, amazingly, is still going strong." If you're not a science dummy, read more here.
Now, in addition to that standard med, I'm also getting an oral chemo drug called Selinexor which is a trial drug! Science! Exciting! It's already an FDA approved cancer fighting med, but they're testing it for this application so I'm lucky and get to try bonus treatment!
So, we started that 7+3 on Saturday which means we're finished already with the Cytarabine. Four more days of the continuous Anthracycline and then some more random days of oral Selinexor. About two weeks from the start date (so, Saturday 6/17-ish) we will do a bone marrow biopsy to determine whether we just sit and hold for two more weeks or want to tweak/change/add something. The first bone marrow biopsy didn't go so great because my bones were too strong, so we'll do this one under CT. I'll likely be getting the sickest about then with chemo side effects at their peak. So, let it all cook for a couple more weeks and then check and see what the data tells us is happening and adapt and go from there. This is how Science works, People.
So, basically I chill with my pole and let these drugs all do their thing.
- Slept well for multiple hours last night so that was super good.
- Labs and vitals are staying pretty strong. Didn't even need any blood transfusions today!
-Coughing is much better today. COVID isn't gone, but I can tell it's fading. Just in time for the chemo side effects to kick in!
- I've been in a window of planning and organizing and outsourcing my whole life (work, kids, dog, house, etc.) so that when I may feel really crummy in the next few weeks, we've got plans in place. There is a spreadsheet, y'all. I know you're shocked. I'm grateful especially to my good friend Spence O'Neill on whom I have bestown the title of "CARE COORDINATOR" for helping me think through all the logistics. We know moms carry a heavy mental load, but passing that load off to others is a reminder of just how heavy! For instance...
- My mom is fresh off an international flight and today helped manage girls' dentist appointments and gymnastics after school, plus getting them ready for Field Day tomorrow and piano lesson and end-of-year teacher gifts. Robert is loving extra on our girls and shuffling back items between home and hospital, and coordinating neighbor help with dog breaks and working. His parents are still here, taking care of Otis, doing laundry, keeping the food going for everyone..... WHAT A TEAM!
-Only real side effects that I'm experiencing are loss of appetite, dry mouth, everything tastes strange. I want to keep eating so I have good energy, but it's a chore, not a joy. And it's weird to take a bite of something and have it taste totally strange and ick. I am so grateful to not have much nausea as that is something I typically struggle with (remember how I threw up every single day all nine months of both pregnancies despite daily Zofran?) and may still. Staying ahead of that will be a huge blessing.
Thanks so much for the continued notes, comments, texts, messages, emails, etc. Each one brightens my day and reminds me how surrounded we are with love. I'm mostly not taking phone calls because talking wears me out more than typing. So feel free to shoot me a written message and know I'll listen to your voicemail, but probably not call you back. And I'm savoring the cards that are coming in the mail. Wish I could write you each back, but know I'm feeling the love.
Morning coffee and meds
My IV pole
My pole with a view of my atrium.... fake flowers in vase (no fresh flowers, please!) sent from a dear old college friend, along with a sleep mask and this note: "They made me think of you and our walks through Reynolda Village ❤️ I hope they brighten your day the way the memory brightened mine" and Eloise's Baby Fiona hippo stuffie in my lap that she's letting me borrow.
New jammies, clean hair.
Another friend sent this today. Pretty spot on:
Thanks be to God.