Andy update: 11/14/24

Yesterday morning was rough. I started out stressed, trying to figure out who I needed to talk to in order to figure out what the hell was going on.

Trevor and my mom headed to the hospital early so Trevor could be backup if needed.

But the new attending doc arrived before Trevor did, and I did not set myself up for a friendly relationship with him. I immediately demanded to know why no one told us that Andy had to leave the hospital to be seen by the oncologist; I told him it was ridiculous that Andy had be pushed out of the hospital to be treated; and that it was insulting that no one bothered to mention this to us and instead acted as if there was no rush to get us out.

The attending, like most people who are greeted by an angry person, became defensive. While the oncologist’s scheduler had said this was an insurance issue, the attending said it was because it was safer for Andy to be outpatient because there was less risk of infection. I have no idea if this was true or cover for the insurance issue. But I wasn’t placated, and kept complaining about how upsetting it was that Andy had cancer growing like a weed and they were pushing the appointment out, and that he needed treatment immediately, and the doctor assured me that a few days won’t matter and that if it was really urgent they would do the treatment faster.

I’m still not sure if that is true or not.

Either way, the oncology appointment has been moved to Monday November 18; and they will start immunotherapy the same day. And the doctor also told me that the insurance wouldn’t approve the immunotherapy until then anyway.

The attending said the oncologist would use something called Keytruda for immunotherapy. It’s supposed to be some kind of miracle drug – let’s hope it is.

Then I started making phone calls to home health care, and had some luck in finding agencies who might have some people for less time than we needed and they would get back to me over the weekend.

Then I started writing the letter to the judge in Grand Isle to ask if I could excused from jury duty. There were so many interruptions – doctors, phone calls, emails – but eventually I managed to send the email, and called to check on it only to be told I needed to call again later to tell them I’d sent the email.

And I started calling home health care agencies, and I think we are going to be able to get coverage by pieces by people from different agencies together but tonight Jonathan and I are the coverage, with me sleeping on a couch in the living room, where Andy is sleeping in a bed; and Jonathan sleeping in Jackson’s bedroom.

With all the confusion over parameters for Andy’s discharge and gate keepers over treatment, I started to panic. I couldn’t focus on the individual tasks, only how overwhelming all the tasks were. I felt my arms and legs getting heavy.

I told my mom and Trevor and Andy that I was going downstairs for a latte – specifically, an oat milk brown sugar cinnamon latte, which I recommend if you are ever in the coffee shop at the Burlington hospital. I thought just leaving the room and getting some coffee might help.

After I got the latte and started back to the room, I realized that I was walking very slowly, and that I didn’t have any strength, and I wasn’t sure I could make it back to the room. And when I did get back I got my pulse ox and saw that my heart rate was 120.

I felt like I was going to pass out, so I asked Andy and my mom to leave the room, and I played “Midnight Sun” (Ella Fitzgerald version) and laid down on the bed and tried to calm myself down. And then I realized that I am going to need some better coping techniques to get through this.

I eventually settled down (thanks, gummies!) and Andy was eventually discharged, and I guess I am a makeshift nurse for two to three days.

Andy also had radiation yesterday to help decrease the pain in his sacrum and left shoulder; he’ll have 4 more treatments (today, Friday, Monday and Tuesday). These treatments take about 10 minutes, though the drive from Grand Isle to Burlington is 35 or 40 minutes each way, so that’s about an hour and a half out of the day). 

While Andy was getting radiation and we were packing up to move out of the hospital room, the Jonathans (Paley and Richman) prepped the house for Andy’s return, and for the medical equipment that was being delivered.

Hopefully today is a little better. We have new friends and family arriving on the scene that that will help!