Quick update or adventures in oncology

I can’t deny that yesterday felt like a hell of a long day. We took off for St. Louis around 10 am. This was our first visit to the main campus of Barnes-Jewish Hospital. In the past we’d gone to the west county location, which felt more like going to Carle.

This. Did. Not.

I’d been there years ago when Ernie’s father was there and his Mom and I went down together there a number of times but, well, it’s been awhile.

The complex is HUGE. We found our way to the valet parking line and waited. It’s a hell of an operation. We went into the lobby and I must say the guy at the information desk was the highlight of the day. So friendly, so informative. Pro tip: the elevator bank to the left is just for oncology patients and is less crowded.

We sat in the lobby for a bit, people watched and checked the Aldi ads. God, I love my husband. He can make sitting in the lobby of a cancer center entertaining.

We headed down to Radiation Oncology and he checked in and filled out all the paperwork that he has filled out a thousand times before. Oh, when I said that the information desk guy was the highlight of the day I was mistaken. NO. It was BEN!!! Running into our beloved friend was most definitely the highlight of our day. Although, as I said to Ernie, it’s getting really bad when we go to a cancer center out of town and STILL run into friends! Anyway—it was so lovely to see you, Ben. Hopefully you will be long past treatment next time we are down there but this was a lovely treat.

We eventually got called and went into the office. The tech was nice and gave us a run down: we would see two nurses, then a doctor, then that doctor plus another doctor. Ok. Talked to the nurses. Waited. Talked to the first doctor. Waited and waited. Talked to second doctor. He left to take a call from the first oncologist we had seen there. Waited. Talked to second doctor again. There was a lot of confusion, going back and forth. Bladder cancer, prostate cancer, chemo, immunotherapy, etc., etc. And granted, it IS confusing with the two cancers, but geesh. It just felt as though we kept answering or saying the same things over and over. The treatment he will be getting is Pluvicto. We had talked about this when we were looking at clinical trials but then we were disqualified from clinical trials. Fortunately it has now been approved by the FDA so Ernie can get it.

I think some of our weariness is just inherent in being a long term patient. Of course we know his story better than anyone else but just the same it gets tiring. All seemed ok until I asked what the time frame was and was told he wouldn’t be able to start until after January some time.

I was less than pleased, which I made clear. I mean, I get it. There are lots of patients out there, this is a new treatment only offered at some places….it becomes a plain old logistical issue. I know we don’t matter more than other patients. However, I told him I was very concerned given how much the liver mets had grown while he was on cabazitaxal. He told me about plans to expand the treatment into a different area with more space or something like that but as I said to him, “Well, that’s not going to happen overnight.” He told me he understood, that he loses sleep over things like this which I well believe, and yet…I don’t really care. ALL I care about is Ernie. He kinda shrugged and said maybe he could make a case for Ernie getting in sooner. I said, “Will you?” and he said yes. He said we’d hear from them. I asked how and he said we’d hear from the nurse. Then he said we were free to go. The whole thing was somewhat unsatisfying.

Oh, oh, oh, and when I was talking about my concern with the delay he said maybe our local oncologist had something to give Ernie in the meantime. Oh, sure, Vasireddy was just keeping it in his pocket until I asked nicely. WTF?

We headed home. On the drive we muttered to each other about what we should have for dinner when we got home. Oh, by the way, NONE of our stove burners work now. Ernie had the brilliant idea to pull off at a rest stop and order Papa Del’s from there. It arrived just a few minutes after we got home.

Back to Vasireddy and Keytruda infusion next week.

Onward.