Hello Friends - well we have now learned what everyone already knew, chemo and fighting cancer is not just logistically hard and lonely, it is also physically hard. Surprise surprise.
David has been in the hospital since August 12 and on chemo since August 14 and on Sunday (day 12 of being admitted; day 10 since treatment) he was feeling tired but really good. Had a huge appetite and had a full dinner courtesy of Wendy's. That evening things took a turn. He started to have burning sensations across his abdomen. It wasn't continuous but would ebb and flow over the night. Unfortunately he didn't have a pain plan in place from the doctor, since he'd felt good up to that point, so it was a bit hard to get the necessary pain management (even Tylenol) from the nurse. They really want to be sure that pain medication doesn't mask symptoms that are more serious and require further action.
Over Monday, they tried to figure out what exactly is going on with David and why his abdomen was so painful. This isn't a typical symptom and also every body reacts differently. He got a blood transfusion and later a CT scan. The blood transfusion didn't resolve the pain and the CT scan didn't show any significant concerns that could explain David's discomfort. While it was puzzling it did also mean that they could start a pain plan. David got some Tylenol that kicked in and really helped. He has also been getting antibiotics each day to ensure that no infections take hold. By Tuesday morning he got even better pain medication, delivered by injection, on demand. That helped him feel much more comfortable.
By end of day Tuesday, he was just so exhausted from being in pain. His counts for platelets and other blood cells continue to be quite low so that also leads to exhaustion. He says that moving around (even rotating in bed) is quite tiring and painful. I expect that Wednesday will see more transfusion to get those numbers up as well. We learned that he really doesn't start to make his own blood products, at volume, after chemo, until 21 days after chemo stops. Which is really only 2 days before he'd be discharged.
It's a bit scary to see David feeling so unwell. Obviously we knew that chemo would be awful but we were probably lulled into a false sense of security given that we had 2-3 days after chemo stopped and David didn't feel terrible. He said that he was feeling about a 7/10 discomfort which is markedly higher than the 3/10 he was feeling while he was getting the chemo infusions. It's actually kind of good that the side effects of chemo only come on after you've done all the transfusions, because it's not like you can chicken out now. You either recover with support in the hospital or recover without support (I suppose you could stay in the hospital and refuse all transfusions etc - we are not doing that).
It does also make David a bit nervous about the consolidation chemotherapy that comes after induction. In that phase he will still get chemo for a week and then recovers at home for a week (we think). The chemo he gets isn't as intense as what he's just had (1 drug instead of 2) but now he's worried because he's got a bit more insight about how rough it can be (and also not naïve to the fact that it can still get worse in this round).
All that to say, the comfort was nice while it lasted but now the side effects are 2 Fast, 2 Furious. We also realized that we might have slipped through the cracks with the social worker at the hospital, but thankfully that's back on track (the SW helps ensure David's work gets everything we need and connects us to other programming).
On the home front, the kids have had a marvellous couple of days. A sister in the ward took them for a day and they had so so much fun playing with her and her teenage daughter. Then they had a day of playing with a school friend. It's super sunny (30+ degrees) so it's a great way to get outside before heading back to school (teacher strike willing).
Tuesday night the Young Women from our ward came and cleaned our house and played with Ellie and Sloan. It was so so incredibly generous and I get teary every time I think about how sweet it is. My sister was here on Monday with the kids so I could spend time with David that night - a sweet blessing because he was not doing well and I got to go with him to the CT scan. We've also received so much kindness in the form of care packages (sunshine kits, kid's activities, candy, delicious home baking) that is making lunches and breakfasts so much easier. We are so grateful and I truly don't know if I could do any of this without an amazing community around us. Even though I am only 1 person, I feel like others have helped me scale my capacity.
As we look at the days ahead, please still feel welcome to visit David. He might not be as gregarious as he usually is, but he does appreciate some companionship. Even if you just bring a book to read beside him. Visits mean a lot to both of us.
If you made it this far and you're praying anyway, we'd deeply appreciate if you add David into your prayers. Particularly for his comfort and the speed of care. Sometimes people start making all their own blood at scale before 21 days, so that might be nice. Right now it is an endurance game for him, so all the support to keep fighting this battle.
We love you, we need you, and we appreciate you - you've shown up so well for us.
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