An Eventful 24 Hours

CAR T Day +2

Well, I was going to get more philosophical and talk about how cancer doesn't discriminate, and how in the course of my many, may years of visiting Dana-Farber, in my travels, I've seen patients of all types from months old to young adults to 90 years old and everywhere in between. People of all colors. People spekaing many different languages. People who looked like CEOs and people from all walks or life. It's a true fact that cancer doesn't care where you come from or who you are.

The only consistent thing I've seen is the amazing people at Dana-Farber who take care of all of these people, meeting them where they are and showing them compassion and care equally. It no longer amazes me because it's just how people who work here are made.

But I'm not going to write about that. I'm going to write about the last 24 hours.

About 24 hours ago, we came back from the regular check ins - everything was fine in clinic - but I was fried. I mean, flat out, get me to a bed, exhausted. So I took a three hour nap - even missing the Chelsea game so you KNOW I was tired. When I woke up to try to eat some food, i was just trying to get through it to get back to bed. But I needed to stay up for my evening vitals check with Nurse Cratchett, I mean Stacy. (Seriously, she's the best, most patient nurse you could ask for - especially considering I'm pretty much sure she didn't sign up for this when we got married 30 years ago)

In any case, vital check at 8 pm unsurprisingly showed that I had a 100.8 fever, which is past the threshold for alarm bells.

A quick detour here: Fever is often the first sign of CRS or cytokine release syndrome. This happens in about half of CAR T patients when the CAR-T cells start multiplying like crazy and your immune system goes haywire. Note: that's not the technical explanation but my understanding of it. Fever can be followed by drop in blood pressure or other issues, including neurological confusion. The possibility of CRS is in the first 7-10 days, thus why we are up here 1 mile from the hospital.

There are plenty of treatments for this, but the idea is to catch it before it gets full blown and so if there is concern that CRS is happening, I'd be admitted. So that's why we do vital checks here in the hotel and why we paged Dr. Jacobsen last night. She called us back in about 2 minutes and we walked through the vitals with her and decided best course was tylenol and the precautionary steroids that we had been prescribed.

Sure enough, the fever broke in a couple hours and I slept well and woke up fine. Well, maybe a bit more than fine.

Let me talk a little bit about steroids. They're great. My appetite was well restored in the morning, I had about two breakfasts and was ready for a third by 11 am. That's also the time that after we to talked to Claire our NP, and Dr. Jacobsen in clinic, and based on labs and our discussion, we made the decision to not get admitted to what my friend Rosemary calls Brigham and Women's Hotel and Casino. Although we were a little hesitant about, we trust Dr. Jacobsen's assessment and we will continue to do vitals here in the hotel - and given how I'm trending today, I'm optimistic. Also tomorrow is only Day +3 and if I'm admitted, I'm there to Day +7 so all in all, seems the right choice.

We left the clinic feeling good and then the day took a huge turn for the better. We connected with my old friend Rosemary and her husband Jim in Yawkey 2. It was just great to catch up with her and if that wasn't enough she had martini cupcakes for us! There are few things that are better for steroid-induced hunger than cupcakes.

After devouring, we stopped up to get some fluids and a little phosphorous, just based on the labs from the morning and then ambled back to the hotel with a couple pit stops in Brookline village including a lovely little cheese shop called Curds & Co, and had a fantastic lunch with fresh bread, cheese, and prosciutto.

And that's where we are now. We turned today from a possible hospital admittance to an all-around fantastic day. Let's hope the night follows course and we'll update more.

Thank you everyone for your kind words, support, and love.