June 29, 2018
Have I said out loud lately that I’m tired of feeling exhausted and run over by a bus every day? Well, I am, and now I’ve said it out loud.
I’m appreciative of the work I’m doing with the speech pathologist. She’s giving me a lot of helpful ideas and workarounds for the chemo brain problems I’m having. I’m still struggling to read a book. I keep having to re-read pieces and my brain gets tired quickly. She suggested that I read either for a set time, like 15 minutes, or to read a specific number of pages, like say, five, at a time. I told her my strategy for passing my certification test, and she liked it. It’s not different from before. I just have to start over because everything’s changed since I did it last.
Today was another clusterf*ck in the Infusion Center. For the past 3 weeks, I’ve been dealing with the Infusion Center schedulers over today’s appointment(s). First, because they overrode an existing appointment for occupational therapy (OT). Second, because after an email conversation with the oncologist after the CT, we decided to add Perjeta back to the maintenance chemo I’m getting til next year. The appointment needed to be moved around to accommodate both the extra time to get the 2nd drug, and adding in another appointment with the Oncologist.
Naturally, when I arrived a little after 9:00 after walking from the other building and stopping at Radiation to order a copy of my PET, the charge nurse starts reaming me a new one about not being there at 8:30. I tried to explain the situation and she wasn’t having it. Fortunately, neither was the Oncologist, who went and reamed the scheduling people. I got roomed and got my infusion and was sent on my way about noon. I don’t have the patience for this right now.
So following up from yesterday’s news, the Oncologists are talking about how to figure out what’s going on in the new spot. They brought in Radiology, Pulmonary and the GI people. The decision was made to have the GI docs do an endoscopy with ultrasound to get a look and a biopsy because it would be easier for them to get at it. The RO called me back around 5:00 pm. We’re going to skip radiation treatments Mon-Weds next week.
For whatever reason, I’m feeling relatively calm about this new development. Maybe because we don’t know why it’s lit up yet. They need to go look at it. I will reserve freaking out for after they’ve been able to get a look at it. I’m thinking now (and hoping) that it’s a spot where reflux has burned my esophagus and it’s trying to heal so the node is inflammatory rather than metastatic cancer.
Radiation was next on the plate. I was there early enough to sit down and map out the issues with my schedule for the next 5 weeks. There aren’t a ton of these appointments that need tweaking. It’s just frustrating to have to come back again, after giving them a list last week, to have to sit down and write them all out again. There is no room for having a life around the treatment plans, even when that having a life means going to other physicians to manage other things, some of which were caused by chemo. #CancerSucks