And now we wait

 Thank you, everyone, for sending leukemia blasting thoughts, prayers, etc. on Friday. I felt completely surrounded with love. The procedure itself was almost anti-climactic. I was transported down to the nuclear medicine area and set in a very small (tight quarters) bay. Due to the clinical trial, I had to have a nurse with me throughout, and she had a new trainee, so he came, too. Then there was the nuclear med specialist and her assistant. They brought out a capsule that looked somewhat other-worldly and had radiation symbols on it, but the only precautions they took were wearing gloves. It was explained that this antibody emits alpha radiation, which is essentially stopped by almost anything (gloves, plastic, paper). They took out a giant syringe filled with a yellowish liquid and inserted it into a machine that dispensed the contents over 30 minutes. The machine was connected to one of my PICC lumens, and that was it. My vitals stayed great throughout (and for the hours afterward that they had to check). I didn't feel anything or any different (actually, I felt better because one of my pre-meds was Tylenol, but I'll get to that later). And now I spend any downtime visualizing my leukemic cells getting toasted by this amazing antibody.

Now I'll go back to a bit before the lintuzimab infusion. Thursday night after Greg left, my nose just started running like crazy! I couldn't even knit because it was dripping that quickly. I also felt like I had some sinus pressure on my left side. That seemed strange because I end up with sinusitis almost every year and it ALWAYS hits my right side. I could still breathe, but I slept with kleenex under my cheek all night. When I woke up on Friday, my left side was even more sensitive across the bridge of my nose and I couldn't stand the sunlight. When I was brushing my teeth, I looked in the mirror and my left eyelid was red and swollen. So I called the nurse, who talked to the doctor, who came to visit me, and (of course) wanted to rule out things, so I got a sinus CT scan (showed low grade sinusitis) and a nasal and throat swab for every virus known to man (all negative). The verdict was that it was likely due to the Cytarabine (the A in CLAG-M), which is the drug that can cross into the nervous system. I'd been getting prophylactic steroidal eye drops, but they stopped on Wednesday. Dr. Carlson said she'd order a stronger steroid eye drop to use until the redness went away and for a few days after. I felt almost immediate relief when using the drops. I had spent most of the day both Friday and Saturday either asleep or with my eyes closed (or keeping the left eye covered if I needed to look at things). It was a rough few days, but I am happy to say that this morning I woke up feeling MUCH better. You know how it is when you feel so cruddy for so long that even a tiny improvement makes you feel like you're on top of the world? That was me today. Chatting with friends, walking the halls, taking a nice long shower....

I know many of you have asked when we know if this regimen is working. We won't know for several weeks, and it won't be until a bone marrow biopsy. I was tracking my blast cell percentage in the peripheral blood, but my WBCs are 0.1, so they can't do subsets of the WBCs and therefore I can't check blast counts. The big thing now is recovery of my marrow ("my" marrow actually being my donor marrow from May--the healthy stuff). I know that those who did this regimen with lower doses of lintuzimab had very delayed cell recovery. My doctor says at least three weeks (not sure when the three weeks counts from). If it doesn't recover after 40 days, I'll need more new marrow. So there's a lot of waiting without knowing anything. I know I don't have to be fully recovered to be discharged, but I do need to be less transfusion dependent (I've gotten blood and/or platelets every other day I've been here). So I wait, and try to be patient.

I have been so lucky to have Greg able to visit me every day. Even on days like yesterday where I laid curled up in a ball, protecting my left eye, and barely interacted with him just knowing he was there was amazing. Friday we made the best of our anniversary that we could. I had all those icky sinusy symptoms and didn't know if it was a cold or something else, but we got permission for him to pick up Vietnamese food. He had a Bahn Mi, and I had a specially-prepared giant bowl of pho (vegetables pre-cooked; no raw ones; extra hot broth). It felt somewhat normal in a strange way. The kids did a Zoom dinner with us, and it was a great way to mark 27 years of marriage. 

Today we played cards and shared a "cheese platter" from the cafeteria. We make our own special times. And we keep hope alive. I've started thinking about the future more than I have since last November. It may well be premature, but I'm rather enjoying it. Here's to 2021 being healthier and less pandemic-y. And really, why not more cheese-y?