Switching tracks

If you’re keeping score, that’s “Back on track,” then “Off track,” and now this one. For a retired railroad mechanic, that’s honestly very on brand. Dad spent his career keeping trains running. Now he’s keeping me in the track puns 😂

First, Dad

He’s home, and he’s feeling better. His appetite is up, which anyone who’s followed along knows it’s a big deal. Mostly, he’s just happy to be alive and home. After the week he had, same, Dad. Same.

And yesterday he got out of the house. He took a short day trip to Manchester and Delhi with his sisters, Mary and Chris. No appointments, no labs, no one checking his sodium. Just a drive and some time with his sisters, which I’m sure was good for all of their souls.

Mary, Glenn, and Chris

The appointment

Tuesday we sat down with his oncologist to go over the CT scan from his hospital stay and figure out what’s next.

The short version: the treatment he’s been on did real work. The spot on his liver and the spots in his bones responded amazingly. Those were the parts that scared me the most back in the spring, and they’re the parts that listened. That’s huge.

What it didn’t do was the same job in his bladder and some of his lymph nodes. The scan showed a new mass in the bladder, so his oncologist is switching him to new treatment in a couple of weeks.

Is this bad?

I know Dad reads these too. Honestly, I think it helps him to take things in this way: written down, at his own pace, without a doctor talking fast. So this part is for everyone, but Dad, this one’s especially for you: switching treatments is not a failure. It’s the normal plan.

Cancer isn’t one thing sitting in one place. Different spots can react differently to the same drug. Doctors even have a name for it: a mixed response. Some areas shrink, some don’t. Dad’s did exactly that.

His oncologist put it in a way that will stick with me forever: cancer’s literal job is to find new spaces to go and grow, and it’s good at its job. So when one treatment stops working in one spot, that’s not Dad doing something wrong, his body failing him, or the doctors missing something. That’s the cancer doing what cancer does, and it’s why there’s a next step ready.

And this next step is the standard one. In the big trial that made Dad’s first treatment the standard, about 8 out of 10 people who went on to another treatment got the same type of chemo he’s starting now. He’s not off the map. This is the map.

And honestly, we’re lucky there is a next step, and more options beyond this one. Not everyone gets that. Some people run out of options, or aren’t strong enough to take the next one when they need it. Dad has a plan, and he’s strong enough to take it. That’s not nothing either.

The new plan

The new treatment is two chemo drugs together: gemcitabine (also called Gemzar) and carboplatin. It’s a well-known combo that’s been used for bladder cancer for years. It works differently than what he was on, which is kind of the point: new angle, new plan of attack.

If you know anything about me, you know that I can’t leave a question alone. I went deep on the research this week, which Dad has told me more than once that I' missed my calling and should have been a doctor. But nah, not for me. Doctors have to advocate for hundreds or people. I only. have to advocate for one, and that’s a lot easier when the one is him.

Here’s what I found: this combo has been studied in people in Dad’s exact spot. In a study published this year of patients moving on after the same first treatment he had, about half saw their tumors shrink.

It’s not a walk in the park. This one is known for being hard on blood counts, so expect more lab checks and possibly more tired days. But he’s used to this. We’ve done sodium math for months, we can do blood count math too.

What’s next

Next week he has a urology appointment with a scope to take a look at his bladder. After that, his oncologist said they’ll likely want to put stents in his ureters (the tubes that carry urine from the kidneys to the bladder) to hold them open from the inside. If that happens, the drains in his back can come out. Fewer tubes, more freedom, more normalcy. We are hoping that can happen before treatment starts mid-October.

We’re also setting up a telehealth visit with his original team in Iowa City, just to check in. It’s always good to have more eyes on the plan, and they know his case from the beginning. I’m also going to dig into clinical trials they might have, but more to come on that.

And I have to say this: Dad's positivity through all of this has amazed me. Two weeks ago he was in the ICU. This week he got news nobody wants to hear, and he's not dwelling. He's ready.

So that's where we are. Some of it worked, some of it didn't, and there's a plan for the part that didn't. That's the whole update in one sentence. I just used a lot more sentences to say it.

Thank you for the calls, texts, messages, and visits over the last couple of weeks.

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Off track