August 28th, 2018

No treatment today. Several levels of things like bilirubin and some enzymes and I’m not sure what all were high today, some extremely so. As such I have a hydration backpack overnight and we’ll try again in the morning. Hopefully I can get the next cycle of treatment soon!

August 27th, 2018

We’re heading back into New York City tomorrow for round three of this clinical trial. Cycle two was far easier than the first go around, and I’m hoping that trend continues. We’re planning to stay in NYC about eight days or so, which will let me receive IV hydration as long as I need it. Hopefully that helps mitigate side-effects as well, which previously have included cold symptoms such as aches, a stuffy nose, and fever, along with a handful of other weird things like itching deep within my surgical scars. There’s a theory though that immunotherapy should include a lot of side-effects, because that means your immune system is doing something. We’ll find out in a few more weeks when I have my next scans if what it’s doing includes fighting cancer or just being annoying.

The last week or so at home has been a nice break from all the time we’ve been stuck in NYC lately. Last week my dad and I went to Canada’s Wonderland theme park near Toronto. It’s owned by the same parent company as Cedar Point and, as such, is included in my season pass. I didn’t feel as well as I was hoping but it was still a fun day and I got to ride Behemoth and Leviathan, a pair of roller coasters I’ve wanted to ride for a while. Then over the weekend Christina and I led our Youth Group’s end of summer overnight event, which included games, pizza, ice cream, a movie, and surprisingly exhausting laser tag—I’m still a bit sore from all the running. It’s been nice to have some normal life in between all the treatments, but I am glad to get back into New York City too. It’s like a second home, and I enjoy being there when I’m not stuck in the inpatient floor.

August 14th, 2018

       With all my blood counts looking good this morning and me starting to feel better, we packed up and checked out of the Ronald McDonald house. This afternoon we took the usual shuttle bus to the airport in New Jersey, typically about a one-and-a-half hour ride. From there it's just a half hour fight (thanks Corporate Angel flight program!) back to Corning, NY, where we haven't been for over a week now--already a departure from our planned 4 nights in NYC.

       About 20 minutes from the airport we got a call from the hospital. One of my blood cultures came back positive for an infection. Since I have no symptoms we kind of assume it's just a contaminated culture but we have to play it safe so we're heading back to NYC right now. I'll be admitted at least for the night, and since I believe it takes 48 hours to fully grow everything from blood cultures I'm going to guess I'll be in the hospital that long as a minimum. We're pretty good by now at being flexible with our plans, but this was a little last-minute even for us.

       Something to pray for if that's your thing would be that it isn't actually an infection, or if it is that it gets resolved easily and quickly. I guess in general, that everything goes smoothly as possible and that we can go home sometime soon. Thanks!

August 11th, 2018

       We're in New York City still. We had been planning to go home Friday, but after some weird liver-function numbers and the start of some of the same side-effects I had during the first cycle of this clinical trial, we and the doctors were all more comfortable with me staying close by. Staying in NYC also means I can continue to get IV hydration over the weekend, which seems to mitigate the side effects too.

       I hovered near a fever last night so they ran some blood cultures this morning just to be on the safe side, but fever and cold symptoms are all noted side-effects so it seems pretty clear that's all I'm experiencing. Which doesn't really make me feel that much better physically, but it definitely beats actually being sick and needing further treatment for something like a cold or flu!

August 8th, 2018

By the time I paid attention to blogging, most of the really popular, successful bloggers I started following posted only once every month or two. These were long, usually a few-thousand-word posts that could easily be sermons or TED talks or chapters of a book. I missed the phase of blogging that started it all, when people posted regularly and often about their lives, about what they were doing, what they were thinking, even and especially if they didn't have answers to the questions they pondered.

I felt like my blog needed to meet the standards I thought was required of all blogs. I tried to write long posts weighted far more to the reflection and insight side of things, rather than the journaling and recording side. I've always wanted the theme of my blog to be cancer and faith and how those topics together intersect with other areas of my life. So that's what I've done. The problem is I only had so many grand insights that felt blogworthy, and I've since compiled these ideas into a book I'm trying to get published, so at this point I don't feel like trying to maintain a blog like that is sustainable.

But that doesn't necessarily mean I don't have any interesting thoughts or an interesting life, or at least, some things going on that might be worth writing about. So, after some time off with a bunch of complications from treatment(?) and who knows why else going on, I’m ready to get back into blogging. I've spent a lot of time rethinking what I want to do in this space, and I've decided to try to post much more often, with much lower standards for myself. I'm not going to worry about having a point at all, much less some sweeping new insight. I'm just going to record bits of what life with cancer looks like.

So today, I write this in my phone as I'm hooked up to an IV for hydration. I had a biopsy sample Monday, part of the protocol for the immunotherapy clinical trial I'm on. That biopsy involved heavy sedation, since they had to stick a big, hollow needle into my back to grab a piece of tumor tissue. Sedation meant nothing to eat or drink from midnight Sunday night until about 4:30 Monday afternoon. Which meant I got fairly under-hydrated. Perhaps as a result of that, some of my pancreatic and liver function numbers were off yesterday and I couldn't get treatment. Nobody really knows why these numbers have been fluctuating so much lately, but that seems to be my new normal.

I've had a bunch of IV fluids the last 24 hours yet somehow also lost around 2 or 3 kilograms (about 5-7lbs) since yesterday, again mystifying the doctors. It might be as simple as a broken scale yesterday, and while that's not especially likely it is more probable than me actually losing a bunch of weight overnight. But the important thing is my pancreas and liver numbers have dropped enough following hydration that I can get more of the clinical trial drug, which they're mixing up now and will infuse shortly.

It takes half an hour for the first drug, which hopefully boosts immune system activity, then a half hour break, then the actual immunotherapy drug, then a couple hours of monitoring and further hydration. It'll be a long day here at the hospital. I'll go back to The Ronald McDonald House tonight with a hydration backpack, which hopefully helps me avoid some of the complications I had during the first round of this experimental treatment. We'll see!

Feature in Notre Dame Magazine

I realized just now that I haven't ever shared here an excerpt from my book on cancer and Christianity that ran in the summer issue of Notre Dame Magazine. You can find it here!