So, I'm going to try to distill today into a few - Five - Good Things. (and maybe a few complaints interwoven too, to keep it real)
1. The girls got to come visit after school!!!!!! It was really really really REALLY good to give them snuggles and hugs and let them see me while I'm pretty healthy and see my room and my beep boop pole and my room service menu and just get to be in my space. We talked about their days and how their amazing teachers and friends had been helpful and kind to them and we watched the Netflix show we've been watching together the last month or so, called Alexa and Katie, which serendipitously is a teeny bopper show about two girls starting high school who are best friends and one is going through cancer treatment. It was already in our rotation and helping to build their understanding of cancer and treatment in a very non-threatening way that we could talk about. So if you have (upper elementary/middle grade) kids in my life who you're trying to help explain Mrs. Chrissy's sudden change to WORST SUMMER EVER, you might enjoy watching that with them, too.
2. I took a shower. And shaved. And removed stickers and tape from my body. It was a very hot shower. It was a delight. And then there were clean sheets. Say no more.
3. I really wanted to get that bone marrow biopsy over with so I'd be less anxious and worried about it since they'll be a regular part of monitoring progress during treatment. Even with the gentle buzz of Ativan and despite lovely, kind highly trained and capable people, my bones were simply too strong. The one working on me said,
"I have done this for 39 years and have never seen such strong bones.... Do you walk a lot?"
"Yes, I do. And take calcium and vitamin D and do yoga and lift weights."
"Well, no wonder we can't get into this"
So, they went to the drill, but still had a hard time getting exactly all that was needed. Hopefully enough to get us started and the next time we're gonna do it under sedation. I'm using this opportunity to not complain about how painful it was and how sore it has left me, but to instead highlight how HEALTHY and FIT and STRONG MY BONES are. Are you listening, AML? And I'm glad to have it done because....
4. Two great conversations with Dr. Bhava today are only continuing to confirm what a great oncologist she will be for me. We got the bone marrow biopsy done but will still be a bit before we get all that data, but we still have A PLAN and CHEMO STARTS TOMORROW! So I'll do a 28-34 day in-patient cycle where we'll be doing two IV drugs: daumorubicin (once a day for three days), cytonabine (continuous for 7 days) and then a third experimental trial oral chemo (selinexor). This is already FDA approved for use in other cancers and is showing high efficacy with AML in these trials and because I'm so young, strong, fit and healthy (keep hearing that; doesn't hurt my feelings), I qualify to add it to the standard care procedure in the first two. Let's raise those remission prognosis stats!
4. I have heard and reconnected with SO MANY folks today. Boy, send out the bat-signal and you people SHOW UP! It was not quiet around here today so I haven't read every one, but I will. And even when I can't respond to each, know how meaningful it is to Robert and to me to be encouraged by you and surrounded by you.
5. COVID is improving daily. Still a nagging cough, but my strength and energy is much better so I'm ready to move toward the next phase of treatment.
A complaint: This blogger interface is old and dated and I am also old and dated (when it comes to technology; NOT old and dated when it comes to leukemia thank-you-very-much). So I spent some time trying to figure out how to update the subscription feeds and I just can't figure it out. I've got to learn a lot about oncology right now, my IT certification will have to come later. If anyone has a quick and easy solution you want to throw my way, let me know. But all our other family history lives here and I'm not interested in changing to a different platform. In the meantime you just might have to bookmark thehardylife.com and check back in the evenings to see if I've bragged any more about how healthy and fit I am?
First and foremost (VOLUME UP), I think we got a new theme song. Start learning your choreography, Team.
