What a week.

It's crazy to think it's barely been a week since I last wrote anything, because it feels again like I've lived a lifetime since then. I still need to catch up on telling Norah and Ryan, my parents, and then the awful task of telling all of the kids. 

Today was an early and crazy day of soccer games for Natalie, Cubby, and Ike, then volleyball for Nat. Siobán surprised us by taking a train down from UCLA yesterday, spending six hours on public transportation, and having Lydia pick her up from the train depot. It was a lovely surprise for Bear after such a crappy week. 

We also spent last night with our friends, the Perrys. Michelle needed to carve a bunch of pumpkins for our school's Fall Festival being held today, so she said we could come over after school, she'd feed us pizza, and the kids could do the dirty work, haha. I had said we'd bring drinks or dessert or something, but when they found out about Bear's diagnosis, they insisted we just bring ourselves. As "kids these days" would say, "BRUHHHHH!" They pulled out ALL the stops and had the most amazing spread of food and drinks, including a case of Diet Pepsi just for Bear. It was so overly generous of them to treat us last night and it was 100% exactly what Bear needed. We watched the World Series game, carved pumpkins, ate a lot of good food (and some junk!), and just sat around the fire talking story. 

Thursday, we received a message from Bear's medical oncologist. They had run some extra labs a week prior and briefly explained it was something about his blood being compatible with treatment, but I didn't fully understand it. When he went to get those labs drawn immediately upon receipt of the referral, the lab itself was confused by everything and kept trying to call the doctor. Apparently, the confusion was something about the labs being sent to the Mayo Clinic, which was crazy. Then, there was another set of the same labs, due to be drawn November 12, two weeks into treatment. 

So, the message from the doctor was to say they'd received the results from the Mayo Clinic and it showed a dihydropyrimidine dehydrogenase (DPD) enzyme deficiency. As we understand it, this is a genetic mutation that causes a shortage of the enzymes which break down the chemo medications. This means he is at high risk for "chemo toxicity," which can cause death in extreme cases, and puts him at a greater risk for side effects AND feeling the side effects more intensely than he would otherwise. 

One of the tender mercies is that all of my reading says they typically don't test for this until AFTER treatment has started and a patient shows an extreme reaction to the medication. I am so, so, SO grateful his doctor tested this ahead of time! Can you imagine?! One of the downsides is that they might have to reduce the amount of chemo medication, to prevent toxicity, but we won't know until our medical oncology appointment on Monday (and treatment starts Tuesday). 

Bear has been so irritatingly positive and unflappable this whole time. He won't Google anything, doesn't want to hear the negatives, and has said he'll be fine and work through the entire treatment. When we met with palliative care, they laughed at what a yin and yang couple we are, ha! Their clinical notes said something about how I am an organized planner who wants to know all of the details to be prepared ahead of time, but Bear is naturally predisposed to NOT know the info, resting assured he is under good medical care and that his jovial disposition will carry him far through treatment. 

But this last news shook Bear. A lot. He was very quiet all night, sometimes almost teary. He said his stomach was tied in knots and he once choked up with emotion, saying it's the first time he's been worried about it all. It was VERY unsettling to see how upset this news made him and it about broke my heart. He keeps mentioning that he can't believe he has this weird mutation thing and he doesn't want them to reduce his medication amount. He says he's been so sure about managing the side effects and he can't believe now that he might not have any say in it. 

I have so much more to spill my guts out about, but have to get moving with my day. I took a few minutes to veg in bed while watching the (not-going-great) BYU game, but have to jump back into the real world, as the kids will all be home soon and we need to hit the ground running again. I just want to freeze time for a while and not only catch up on the house and chores and tasks needing to be done, but also just spend time loving up on Bear.