Padded walls

As I sit here writing this we are now at 40 days.

40 days of not sleeping at home, not showering in one’s own shower, not seeing the sun or breathing fresh air (but for the one trip downstairs), not driving a car, not laying on a couch to watch football, not grabbing a bite with friends, not being able to fast forward through commercials (potentially the worst offense😡 other than the absence of beer)...the list is endless. Think of everything you do (some voluntarily, some by obligation) on a daily basis and then pretend you can’t. In the absence of choices and opportunities to make even simple decisions, it can be emotionally draining. It can make your fuse shorter, and your sense of humor wane. It can turn you from person to patient. It can erode one’s sense of self. Then throw in the stress and anxiety of confronting disease and side effects. Fatigue and sporadic discomfort. All the while staying laser focused on positive thought, visualization, etc. It would start to affect even the toughest among us. And it sure started to crack our foundation over the last week. We'd honestly been pretty impervious until about a week ago - what we now realize was the "honeymoon" period in our cancer crash course. I started noticing myself getting more anxious about this disease, becoming more overwhelmed at all that lay ahead, and it culminated with a tearful breakdown session to which my brother just sat and listened. C started to seem a little more distant, a little less engaged, a little less pep in his step. I broached it once or twice and he reasoned that it was just the massive doses of chemo starting to take their toll. But it still seemed like a little more than just chemo fog and chemo fatigue. So a couple days after the changes had started to chip away at our carefully curated little cocoon, C said he wanted to talk about something. We sat together on his bed and he said he realized that he was feeling like the walls were closing in a little too much, his independence and ability to make his own decisions seemed out of reach, and he felt like while all the encouragement and direction were in his own best interest, HE was disappearing into "patient." And before I could get out the offer to ease up on my end (and would I have complied anyway? 😬), he said, “Please do not stop what you’re doing. I know it’s for my own good." He then proceeded to say that he had a little chat with himself and it basically went like this....“Come on, Craig. Suck it up. You’ve only got 10 more days of chemo. Eye on the prize. Anyone can do 10 more days." After he told me, we of course laughed at the 10 days. I mean it’s 10 more days of chemo, not 10 more days of hospital. But let’s not get mired in the negative. The light at the end of this tunnel is only 10 days away. 🌟

And just like that, the walls moved back a little and let in some breathing room. 🙏🏼❤️

So here’s where we are this week. We believe wholeheartedly that this round of chemo is really doing it’s thing. Blood (liquid cancer) isn’t measurable during chemo the way solid (tumor cancer) is. There are no markers to measure it’s efficacy until the next bone marrow biopsy. But here are the “markers” we have seen to know it’s working:

1. He’s had an awkward case of irritated...frank and beans. Meat and potatoes? Horse and buggy? Feel free to choose the moniker you like best. 😜 And he inadvertently used my prescription eczema cream instead of his prescription hydrocortisone cream for almost a week. And what do you know, facial eczema cream has an off-label use! This “element“ 😂 of the conversation has provided many good laughs over the last week. Each “member“ of our team has had a good chuckle. I’m sorry - apparently I was a 12-year-old boy in a past life!

2. His remaining nodule of leukemia on his skin took a chemo beating. It’s totally gone!

3. He is fevering some after his nighttime oral chemo. This sucks, but he doesn’t really feel badly during it. He takes the ice packs like a champ and agrees to hold off on Tylenol (to not further tax his liver). So far, no Tylenol! We seem to break the fever within an hour or two. Just enough to further ensure a crappy night sleep. 🧘‍♀️🧘🏻‍♂️ With fever comes additional blood draws for cultures. Sometimes a chest X-ray in the room, too. And those are in addition to all the other draws and stop-ins that happen during the night. Clearly hospitals didn’t get the memo that insufficient sleep can affect life expectancy!!! 🙄 And with a particular recent fever, there may or may not have been a rather prickly exchange between someone’s wife and the new night nurse. I’m not talking Shirley MacLaine “Give my daughter the shot!” prickly. Maybe more a calm Carol Brady warning the nurse that Tiffany Haddish is lurking just below the surface. As you can imagine, we were assigned a different nurse. Immediately. 🤷‍♀️

4. He has also seen the beginnings of the dreaded leukemia bone pain. He thought he had inadvertently slept funny on his shoulder last weekend. Then he thought his legs were having some unusual tingling. Then it hurt his left thigh to put weight on the leg. Then his fingers got a little achy. It started as very intermittent and very localized so he had asked for a non-narcotic pain reliever so as not to use heavier drugs than necessary. Unfortunately, the intensity has grown and the pain has increased. So he is trying some low dose pain killers to see if they can alleviate the pain. Wednesday night (as I’m writing this) he’s in quite terrible pain and hours without much relief. *** it’s now Thursday night before posting this update. Wednesday night was really difficult until about 1:30am when the pain finally let up. He got ahead of it and had only one more pill at 5am this morning. He has not asked for anything more. It’s now 10pm so no pain or meds in 17 hours. 🤞🏼 I’m sure they will add something with other meds later to ensure a pain free night, but great that it didn’t start back up. His primary pain is left femur and hip.

The whole floor has been amazed at how well he has done since day one. They always joke about C being the easiest patient ever. This last week has seen the residual effects of the last month materialize. Even his doctor asked on Tuesday if he was “playing sick” b/c it’s so strange to see him less energetic. But one of his nurses said something really profound. She said, "give yourself some grace." It resonated. Then to be sure it stuck, the Universe stepped in, just in case he wasn’t quite listening, and dumped a 16oz coffee on his open laptop. So grace it was!!

His organs and vitals are doing great! They are super strong, showing great numbers, and managing everything being thrown at them. There have been MANY pre-emptive and precautionary tests run at the first sign of anything suspect, and he always comes out with a gold star.

Lots of activity behind the scenes this week (See all pics below). Several of my lifelong BFF’s/UA girlfriends got together to organize, purchase, prep, and cook delicious meals for C. They went above and beyond to adhere to the healthiest of guidelines. And their presentation was stellar. They included food labels with sweet messages and avatars. 💕 UA girls don’t do anything half-assed! And my guess is some mimosas might have been shared along the way. You know, to toast C! On that same note, our dear friends, appropriately named The Goods, also went to work in their kitchen. We have been friends with them for years (ironically another UA girl different class), and have reaped the benefit of his culinary skills more times than we can count (he’s an executive chef). Knowing our friends, we suspect one of them acted more as sommelier during the food prep. 😂🍷 Also, our sweet friends at Enlighten, where I’ve gone for years, and have perhaps strongly compelled C to go for proper skincare, sent an awesome sweatshirt to let us know they are in our corner and that he’s got this! And lastly, platelet donation. My brother came back to Dallas to not only help with any house things normally done by or requested by C (filters, nail in a tire, etc), but to donate platelets with me, specifically in Dallas, where there is a desperate need. We went to our appt today (Thursday). Once you’ve been screened (described in earlier post) and have the go ahead, they run a quick onsite test to make sure you have enough platelets for donation. I was very upset to learn I wasn’t making enough to donate today. But Morgan was able to donate and sat for the 2 hours of apheresis! He was great! They will test me again when I return for my next blood donation. 🤞🏼 So, I do believe that’s all we have to report for now. Counting down to last chemo pill on 12.24 and hopefully bone marrow biopsy on 12.26.

Been hanging your beautiful Christmas cards. Been hanging some adult cursing coloring book pics. Enjoying hilarious El Arroyo sign quotes (it’s an Austin thing). Craig received a new Swear Jar to keep in the hospital “apartment." Apparently he needed one in Indy and they thought he did in Dallas too. Thinks, ladies! 😉 Y’all keep us very entertained! And the nurses really “love what we’ve done with the place”. xoxo, everyone!

Have a great start to your holiday break!!!! 🎄⛄️

Hope this finds you all well,

C & A

Enlighten Sweatshirt! 👊🏼

UA besties! ❤️👯

The Goods! 👨🏻‍🍳🙋‍♀️🍷

If you’re worried this experience has caused Craig to adopt a new,rosy outlook on life, don’t. He’s still the Craig we all know and love. Just watch video to the end. 😂 And he’ll be adding $1 to the "Swear Jar."