Week 11 - small victories

Drawing stamina from a Martin Luther King Jr. quote seems appropriate.

Day 74 and we are back in the BMT unit. We had a hiccup while in ICU with some additional bleeding a couple of days after surgery, but they added in a coagulant drug, delayed removing the drain, kept a higher platelet threshold for longer, and our scans have held. This morning was the third one that hasn’t seen any changes, so that’s great. The new drug will need to be closely monitored as clots can be of concern, but he’s doing remarkably well. Today showed a marked improvement with walking/gait and energy. We’ve gone out to walk and socialize 3x so far today. The goal is to DO a little, REST a little. Whether that’s taking some calls/working, then a power nap, or showering and a short walk, then a power nap, eating and some emails, power nap. You get the picture. We just think it best to not push too hard in any one direction for too long. That ends up taxing him even more and proves unproductive. They are also trying out some different scheduling to allow him more time to sleep. Typically he gets blood draws every night around midnight. But with meds at 9pm (he goes to sleep usually around 8), then labs at 12 midnight, then usually platelets or blood around 3-4am (both require vitals before and after a 15-minute waiting period that the nurse stays in the room), then shift change at 7am, vitals at 8am, etc. Restorative sleep doesn’t happen. I want to go to the manufacturer of the sterilized blood draw packages, wait until they have the worst flu of their life, and then open the 20 parts of the package next to their head in the middle of the night for about a 15-30 min process (depending on who is drawing) and see if they might rethink the sound quality of the plastic they are using. Think of a child’s toy packaging in that hard clear plastic, not at all pliable, combined with a Twizzlers package someone is struggling to open in a quiet movie theater. Every. Night. 🤯 Since they are now doing 2 blood draws/day instead of one, they tried doing labs at 9pm last night. This way if he needs platelets, they can ideally be hung by 10pm-12am and leave many more hours of actual sleep. That didn’t work out last night bc of some other tests, but hopefully it will going forward. Oh, and his favorite assessment every 4 hours....NIH test. ”Craig, what’s your name, DOB, where are you, what year is it, who is the president (fodder for jokes), count backwards by multiples of 10, touch my finger, touch your nose, how many fingers am I holding up, etc”. 🤯😭🙅🏻‍♂️🤬. Can’t be helped. No ones fault (aside from the plastic manufacturer), but it’s necessary to make sure everything is fine.

Unfortunately, we had to surrender (under duress 😜) our spacious corner suite the day of our move to ICU. That was a bit of a cluster given that we had months of belongings with us, but there were more admissions than discharges so “thems is the breaks”. George and Weezy had a good run. We are back on 11 with the old gang though and getting settled in. I am holding off on decorating in case we get our prison break. It is still the collective goal to get us home for a few days before the next round of chemo. Neuro has said assuming Friday’s CT looks good, they will sign off. They also clarified, “but we aren’t oncology”. We still haven't been cleared to start another round of chemo yet either (Neuro has to clear - they are active team members now). They are thinking possibly next week, so our window is tight. But hopefully we are moving in that direction - even 2 days at home would be sooooooo therapeutic. Today........January 22, 2020........is the first time since November 15, 2019, C is not neutropenic!!! He made it in by 2/10 of a point on the low end of the normal range (you know I’m fatigued to be leaving this untapped medley of jokes), but it feels like a milestone! Of the 74 days thus far, only the first five were not in a state of neutropenia. It‘s a testament to the BMT protocols established by our doctors/nurses and our self-imposed rules that have kept him infection free even with two stays in ICU.

Mentally gearing up for our next round of chemo. Physically going into it with a bit of a deficit. Most people would have a month at home to relax, exercise, eat well. Our month had two brain surgeries and tastebuds that battled for only yogurt, pancakes, and fruit everyday. Should be a 6-week stay, give or take. Hence why a few days home would be nice. We talked about it today. What it takes to get your head in the right space to tackle it again - and all the fear and unknown that goes along with it. And then we both just sat there stumped - we don’t have the answer. We just have to do it. Period. And we both said that going through it with laughter and fun beats the heck out of trying to do it if you’re a Debbie Downer. 🤐 So fun chemo round, here we come! Yay. 🙄

Fingers crossed we have some pictures away from hospital grounds in the next coming days 🤞🏼🤞🏼🤞🏼🤞🏼!

Hope this finds you all well,

C & A

Now......

ICU.....

Our 😇 NP gave C some blue light blocking glasses to try. And they work!

We have a favorite PCT nicknamed CB and she made this for his room today 😂🐔