Saturday, September 17, 2016

The Beginning of the End

Friday (last) was a cornucopia of appointments at the SCCA: labs, PA consult, Palliative Care consult, nutritionist consult, infusion, and even a surprise visit from my oncologist. All in the wake of an extended period of chronic pain.

A lab draw's a lab draw, so let's start with the PA consult. My usual PA was on vacation, so my appointment was with one of the others on the team. She arrived with an entourage: the research coordinator for the study I'm on, a nurse from the palliative care group, and a third person whose role I can't recall. And I have to admit, when they came into the room -- four attractive women all seemingly under the age of thirty --  I couldn't help but think of the mean girls.

Which is not to say any of them were "mean." Just the opposite. Like everyone at the SCCA, these four were definitely working hard in pursuit of my best interests as their patient. Unfortunately, I sort of got things off on the wrong foot -- multiple weeks of chronic pain can do that to you -- by insisting there were things they weren't telling me. Specifically, my pain had progressed to the point that it was exactly -- and I mean exactly -- like the pain I'd experienced in the days leading up to my initial visit to the urgent care clinic and subsequent cancer diagnosis. This is to say, I was pretty convinced that whatever tumors had emerged in my colon were back to blocking. 

This had two effects: first, we spent the first ten or so minutes of the appointment with the PA explaining all the reasons why I couldn't have a blockage and printing out copies of the scan reports that substantiated that conclusion; and second, I'd done a pretty good job convincing the group of them that I was bonkers. 

Happily, I had the perfect counterargument to the belief that I was bonkers: I was in excruciating pain. So when we reached the physical examination portion of the appointment and the PA began her palpitation of my abdomen, I shrieked and just about levitated off the table. Suddenly, I seemed a lot less bonkers. 

But I still walked out of the appointment with instructions to keep on doing the same things I'd been doing, only more so. Ah well.

Next up was the infusion. An infusion's normally just an infusion, but this one featured guest stars. First up was the nutritionist. Given the pain causing properties of all the solid food I'd eaten over the previous weeks, I was really hoping the nutritionist might be able to give me some recommendations on ways I could eat without my guts exploding a few minutes, hours or days later. It was a nice conversation, and she left me with a list of foods with high calorie to mass ratios that would be my best choices under the circumstances. She also recommended eating many more much smaller meals throughout the day rather than two or three large meals. 

In the midst of my conversation with the nutritionist my oncologist stopped by. He'd clearly talked with the PA, heard that I was unhappy, and so wanted to check in. Given all that was going on it wasn't the most focused of meetings, but we did talk a bit more about the potential benefits of the trial I'm on and the current treatment focus, and I appreciated that he was engaged with trying to address my current problem set.

The last person who stopped by was the palliative nurse I'd seen the last few times. We talked a bit about the outcome of my appointment with the PA, and she made some tweaks to the instructions. Specifically, she dropped a couple of the laxatives from my regimen, and increased the Fentanyl. In her opinion, it wasn't worth continuing to try a laxative that hadn't worked, and my current dosage of the Fentanyl was low enough that making the smallest possible increases just didn't make sense. If the pain wasn't close to gone, as it wasn't, better to just crank it up.

And so with all of that in play, we (Sib4 and I) stopped by the pharmacy to pick up the new drugs, and headed home. 

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