Some good, some ok, and a Trip to the tetons

I’ve been putting this off for two weeks, mostly because every time I sat down to write, something else happened!

Short version: some of this is working, some of it isn’t, and Dad is doing great, which makes the whole thing confusing to explain.

Let’s go.

First: he’s fine. Like, actually fine.

I’m saying this first because there are scan results further down and I know how people read.

Throughout this journey, he’s still his independent (stubborn) self. He hasn’t experienced any gnarly symptoms from chemo, hardly any pain, and finally eating well again, even though his weight hasn’t seemed to want to budge. And his sisters have been showing up for him in ways I will never be able to repay or thank them for. And in August, Dad gets to go on vacation to the Tetons! A bucket-list type trip. We are so excited.

Palliative care, which is NOT hospice

Say it with me. Not hospice.

I’ve learned a lot since this all started, and this is one on the list. Palliative care is a team whose entire job is making sure he feels okay while he’s in treatment. He is still getting full treatment. They’re an addition.

They’ve been really helpful in this whole thing. They come find him in the infusion chair so he’s not making a second trip, or adding another appointment. They ask him about the actual human stuff: is he sleeping, is he eating, is his mouth try, is he feeling depressed or anxious — and then they do something about it. After months of appointments where everyone wants to talk about the cancer, having someone whose job is asking how he’s doing has been lovely.

If you get offered palliative care for someone you love: say yes. That’s my PSA for today.

salt, thyroid, and a tooth

Three smaller things, in descending order of how much they actually matter.

The salt. This one sounds like fake news but it’s real. Dad’s blood sodium runs low and has for a while. But when it drops too far, they won’t give him his treatment. They’ve had to send him home without it a few times now. And although it’s always hard when that happens, we know it’s for the best.

Dad’s been on prescription salt tablets for a while, and they upped the dose at his last appointment. He’s been able to tolerate any change in that luckily, he just feels very thirsty (which tracks).

The new part is he’s being referred to a kidney specialist to figure out why this keeps happening. That hasn’t been scheduled yet, but I’m hoping someone can help us get to the bottom of why this keeps happening.

The thyroid. Routine bloodwork came back a little weird last week. One of the drugs he’s on for treatment can cause this, and it’s a known side effect. The good news is, is that it’s very common and manageable. So hopefully in the next few weeks, we’ll be off to see the wizard, the wonderful wizard of endocinology. He hasn’t had any symptoms to report with this, it’s just something they found in his levels—which is exactly what all these weekly labs are for!

The tooth. A scan flagged something in his jaw where he’d had a tooth pulled years ago. He went to the dentist, and it turned out to be a leftover fragment of bone that had worked its way to the surface. They shaved it down. It’s been much better since. It was causing him a lot of pain, discomfort, and was causing his levels to be a bit wonky.

Okay, the scans

He had a PET scan in early July that they compared to the one from March, and then a CT a couple weeks later.

The good, and it’s real:

The cancer in his bones — which was in a lot of places — has gone quiet. Still visible on the images, but not active anymore. And the spot on his liver from March isn’t showing anything either.

That’s the treatment working. That’s not a small thing, and I don’t want it buried.

It’s huge, positive, fantastic news.

The less good — but with a real caveat:

Both scans picked up new spots in his lymph nodes, in his chest and pelvis, in an area that looked clear back in March. The radiologists flagged them as concerning for cancer spread.

I want to bring emphasis to those words, though. “Concerning for” is the actual language in the reports I’ve been combing through, but nothing has been biopsied, so nothing can be 100% certain. His oncologist hasn’t reviewed any of this with us or on her own yet either. So this is a finding that needs a conversation, not a conclusion, and doesn’t necessarily mean anything yet.

One thing that came back reassuring: they specifically checked whether anything was blocking his kidneys. Nothing is. That was the open worry and it got answered.

So, as you can see, a bit of a mixed bag. Treatment is clearly working, and the cancer clearly found somewhere new to go while it was doing it. As I mentioned before, the oncologist hasn’t looked at this and hasn’t spoken to us yet, so as of right now, there is no change in his treatment plan. I’m personally going to hold on to the fact that we have evidence the treatment is working!

What’s next

Talk to oncology about whether any of this changes anything. Chase the kidney and thyroid referral. Keep the salt going. Prepare for our trip to the Tetons!

If you want to do something

Give him a call, stop by. He loves it, and he has energy for those things, which I don’t want to take for granted. Ask him about the Tetons. He’s counting down, I’m sure!

There is also a GoFundMe that I set up. He did not ask me to, and he would rather I hadn’t—trust me 😂 He’s a man who has fixed every problem he’s ever had with his own two hands and a socket set, and this is not that kind of problem. The funds help cover medical expenses.

If you can chip in, thank you, sincerely. If you can’t, share our link. That genuinely helps so much.

Thanks, all of you. The check-ins have meant more than I’ve probably said.

— Steph