David and the DDC: the plot thickens

David has been in the hospital for over 3 weeks now. It's gone by fast but also every day is a new surprise. Last week felt like a slog but this week things are moving really quickly.

Earlier week David's belly hurt so much and he was getting an injection of pain medication to help with the pain. He had CT scans and XRays of his chest to try and figure out what was going on. On Monday, when I visited he was so so out of it. I ended up being at the hospital at the same time as the Resident and the Attending were chatting with David (usually I go in the evening but because it was a stat I was there before lunch), and thanks to my sister, I had some questions to ask. Together with the attending we decided to put David on digestive rest - basically clear liquids for 24 hours. They wanted David to consent to it, but he was so confused he just kept saying "I don't know". But I said we should go for it, just to give his belly some rest. Especially because he hasn't enjoyed eating anyway.

By Tuesday's visit he was a lot more like himself. We visited with the kids and he was back to normal. Which was good, because David out of it was so unnerving. He's not usually a guy who struggles to string a sentence together. Tuesday was the kid's first day of school so they had lots to share with him so it was nice to have Daddy being Daddy (if a bit more tired).

Wednesday had some unnerving results, as blasts showed up in David's blood test for the first time after chemotherapy. As you may recall: Blasts (specifically myeloblast) are immature blood cells, and in a healthy individual, these cells develop and mature into normal blood cells in the bone marrow before entering the bloodstream. They are typically not found in the blood stream, just in the bone marrow. And in a healthy adult, would be less than 5% of cells. However, we were told to not panic *because* blast cells are baby blood cells, and your bone marrow makes a lot of babies to remake all your blood products that are destroyed by chemotherapy. So you need to have blasts in order to get the rest of the blood cells. And so this is normal, expected and probably even good. (In the picture below, the blasts are the first cells in the yellowy section)

So we are currently *not* panicking and hoping that everything will shake out. As David does start to make his own blood (we are seeing upticks in White Blood Cells, Platelets and other blood markers - Red Blood Cells are pretty low), he starts to feel better, and he's less likely to need more blood products. Blood products are amazing (have you donated lately?!), but they often make him more tired and there is some risk in using someone else's blood rather than your own.

Wednesday & Thursday David also started to eat a little more solidish food - like pudding, and it doesn't seem like his belly is going to get worse again. The infectious disease experts thought they could try taking David off all the antibiotics to see if that was making him hurt, but the hematologists did not love the idea of no antibiotics when he's so immunocompromised. David said he left it to them to decide. To be continued there.

David's roommate also got released. Since they have the same kind of cancer, it's nice to see someone get to the other side. Especially because Frank had some really rough days in there too. His new roommate is a lady named Barb, who is there for consolidation chemo (which would be David's next step after he finishes induction) so he's kind of excited to see what toll that takes on the body. Though she has a lot of other stuff going on, so a few confounding variables. It's weird that David spent 20 days across a curtain from a guy, did some of the hardest stuff they will ever do, even eventually chatted with each other, and they will likely never see each other again. I would have got his Instagram (?) if I knew it was going to be his last day.

Thursday was David and my 16 year anniversary. One of us has been in the hospital for our anniversary on 2 separate anniversaries (2/16 being in the hospital on Sept 4 is not great stats). My parents sent us some Lego to build and we got to cuddle, chat and take it slow. Dinner was in the cafeteria. So not the best food in the world, but the first time we've eaten there in 23 days! Well I ate, David did not since it all tastes like dust anyway. It was a nice quiet night while my brother took the kids to play with their cousins.

One other thing David has noticed is that the variety of drugs and the extended resting periods means that his waking life has a lot more daydreams - and they're super wacky/don't make any sense. It's a bit unsettling but when he has something to focus on (visitors, audiobooks, etc), it does make it quiet down a bit.

Having our caregiver for the kids from 4-7pm is amazing!! She really connected with the kids and having her make their lunches, practice piano with Ellie, make dinner and just check in with them is making my stress load so much lighter. It means I can visit David after work without the guilt of the kids being left alone - in fact they probably have more fun with her. On days when I'll work from home, I can catch up from the days I leave early from work, because she's there helping and supporting. It's such a privilege to have this kind of help!

The kids seem pretty happy with back to school (though getting ready quickly in the morning is rocking Sloan's world). And I'm happy to have a bit more predictability in the schedule (teacher strike notwithstanding). I am also getting ready for David's eventual release from the hospital. Because he'll be so immunocompromised, I'm getting the house deep-cleaned and the furnace cleaned (we've never had it cleaned before, so there is probably a lot of cat fluff in there). We'll also be setting aside a bed and bathroom/sink that is just for him so we can minimize contagion. I'm a bit nervous of that stage because we won't have nursing care + daily blood tests to make sure things are on track....but I'm also taking one day at a time...just..one...day. I'm trying...kind of. I just like to have some sense of order where I can get it, so there are less surprises like "oh I should have been doing that?" Maybe a cancer doula is something that should exist.

I'm doing okay with my amazing support network. No act of service is unappreciated from lawn mowing, to fridge organizing, to delicious foods!

If you want to be a part of our efforts:

1) Sign up to donate blood - September is blood cancer awareness month! so a great time to donate (David used probably about 5-6 "servings" of blood and I think about 8 of platelets)

2) Pop over to visit David - your chances may be dwindling

3) Pray for good bloodwork that has blasts doing their job appropriately and not running amok

4) Remind your loved ones to get regular bloodwork to ensure they're proactive in disease management (ignorance is not bliss here)

xoxox

Just. One. Day. At. A. Time

P.S. David's hair loss has been epic: