Unscrew it and take the lid off.

**written yesterday (Wednesday)

Or so it goes....😳 that’s what we were told would be the method going back in for another craniotomy tomorrow. It actually did make us chuckle. And so our path is diverted again. It hasn’t exactly been what we’d call a relaxing week thus far. We had what should have been our “sign off“ head CT around 4am Tuesday morning, and neuro came in by 6am (not in a dramatic way - they round early). Fluid had increased since last CT (which had also increased since prior one) and that is not the direction we are wanting it to go. Ideally, they would go in and do a much larger craniotomy than the last one. That would be for a person otherwise disease free. Our situation complicates that, and eliminates that option. Instead, the same neurosurgeon will go in through the same incision and drain the blood. So at least C’s pretty head will not have an additional scar! We/They have obvious concern of this repeating itself. It is a function of the chemo decreasing blood counts/platelets, lower platelets means more susceptibility to bleeds (platelets are a clotting agent), the more platelets one gets the less efficacy they have, and so the cycle continues. Until C is in remission (and really post-transplant), the platelet counts won’t rebound on their own. It is challenging. We are tackling one obstacle at a time (thank you Hugh Fagan & Lisa Shatz for pep talk and reminder about prioritizing). This is a tough blow as we ideally would be starting chemo or a clinical trial very soon. This delays either of those from happening for 10-14 days. I’m sure y’all can deduce that also means we aren’t attacking the cancer during that period either. And now b/c of the head issue, it would likely make us ineligible for a clinical trial. Our doctor had reached out to his contacts at MDA and Hutch and didn’t find any trials that warranted going that route. Through my lifelong friend Dina, she was able to put our doctor in touch with one of the top oncologists at Sloan-Kettering to see if they have any that would benefit C. They were supposed to speak today, but I haven’t heard back on that yet. And the bleed would likely now play into it even if they do. It‘s frustrating - C said he felt like he not only got a good climb up the mountain and fell back down, but this time there was a sinkhole at the bottom. But that was Tuesday and today is Wednesday, so we focus and move forward. He walked today (we don’t want to give back all the physical progress we‘ve gained), ate well, worked some, napped together, and had some hilarious laughs with our daytime patient care technician and then again with our nighttime PCT....at the expense of the daytime PCT and her story that brought about the original laughter. 😜 Who’s on first? ⚾️ I feel like that was even confusing to write. Amidst all the bullshit that is crappy cancer, we did have some good news. I’m pregnant. OMG - what I wouldn’t give to see those double takes. 😂 Seriously, to be a fly on the wall.

Ok, the good news is that his bone marrow is recovering nicely - we are getting regeneration and the important counts are starting to come up as they like to see. And right now, continued focus on the good parts that are happening is mental fortitude. What we’ve come to learn (and discuss with nurses/PCT here) - all illness does is bring out an enhanced version of who you already are. It can’t take credit for making you kind or blame for making you inconsiderate, it doesn’t teach you to be respectful or excuse a lack of civility, it doesn’t generate laughter or force a scowl, and it certainly does not inherently prepare someone for the grit, compassion, empathy, joy, perseverance, and strength of character I see in my Ludes (C) and so many people on this floor and in our lives daily. Those qualities are already with you when you start the journey, or they aren’t.

C’s surgery is at 4pm tomorrow (Thursday). I don’t always post this update when I write it. He’s usually asleep by writing time and I like to make sure it’s both of our sentiments. We will probably go over to Neurovascular ICU around 2/230. I’ve already called over to see if it’s possible to get our same nurses from last time. Hopefully we can. He’s in great hands, they are very familiar with his overall condition, and they are already intimately acquainted with his noggin’. He had his staples out last week so he already knows it will be a walk in the park to do it again (and it was healing so nicely 😩). They said we should again be out of ICU and back to BMT within a couple of days. I know y’all are all anxious to see what anesthesia trip he takes me on this time around. He already said maybe he’d reveal the location of the hidden money statues 💰💰🤞🏼.

Please not only keep him in your thoughts and prayers for tomorrow, but for good energy to assist his good cells to keep the remaining bad cells at bay, and for time and an open pathway to manage the platelet issue and allow us to climb back up the mountain. We have our hiking boots ready to go!

Hope this finds you all well,

C & A

PS - there were a number of extremely helpful things done for us this week (Babs, Aunt Anne, Ashley E), and care packages sent that I haven’t even been home to open (Ashley H), and others that I have (Monica DLC). If I ever fail to mention something or how much it means, know that we actually do remember it. I know I don’t have to say this, I want to say it. Every time someone walks in our room they comment how welcoming it feels and how amazing the cards and pictures are. The collective energy really helps carry us along. ❤️