Andy Paley update: 11/12/24

This one's a little long. To paraphase Mark Twain, I would've written a shorter post if I'd had more time.

Today was a doozy.

It started out with Andy waking up in more pain than usual – not the left shoulder blade pain, though there was that, but pain everywhere. The palliative care team is still switching up meds to try to find the right mix.

As recently as yesterday, the resident doctors told us that we needed to make sure Andy has the right pain meds before they release him; and have indicated that we should take the time to make that happen, even if it delays discharge.

This morning the resident noted that they were taking away the IV morphine (that they’d just prescribed a couple of days ago) because we wouldn’t be able to administer that at home. I thought it made sense they were preparing him for discharge in the next day or two or three – whenever they get the pain meds mix right.

So I was a little surprised when the doctor noted that Andy would need to be discharged in able to get his oncology treatments. I didn’t understand why, but I figured I would ask the oncologist tomorrow.

Shortly after that, I received a call from a company saying they were delivering a hospital bed, wheelchair, commode, shower bench and walker to Andy’s house tomorrow. I was pleased to know I could soon cross that task off my list. Next I needed to find a home health care provider, so I started making calls to schedule that. No one has called me back yet, though one place did tell me they haven’t provided home health care for years, which is when I realized the list the case manager gave me is from 2013.

I wasn’t sure how I could find someone when I wasn’t sure how many hours we needed them or when they should start, but at least I wanted to start getting some idea of availability.

Then Violet and Jonathan arrived at the hospital, and Violet wanted to take me for a spa day so I could have a break.  I thought a spa day was too big of a commitment. Despite how stressful this is, sometimes it’s more stressful to be away and risk missing a doctor and having the chance to understand next steps and/or ask questions.

So I suggested a mani/pedi instead: it seemed like less of a commitment, plus I was embarrassed walking around the hospital late nights and early mornings in my pjs wearing my flip flops because I am certain no one wanted to see those toenails – I didn’t even want to look at them - and my fingernails looked as if I’d been digging in the mud, and no amount of washing them seemed to improve the situation.

We headed out for a short respite.

And it was short.

We did have nice mani/pedis, and we got carry-out Vietnamese food afterwards and went back to my house, picking up Charlie from school on the way, and then ate a mid-day meal with the boys. I was going to relax a bit before heading back in when Andy’s friend Alison called me.

Alison is a breast cancer surgeon and I am not sure Andy would have survived his 2019 week-long shit show at Cedars Sinai if Alison hadn’t been there to guide us through all the errors and missteps.

Alison had just talked to the scheduler for the oncologist. She wanted to get more information about Andy’s cancer, and Andy had given consent for Alison to have access to his records.

She’s the first one to learn that the oncologist had cancelled Andy’s appointment for tomorrow.

She’s also the first one to learn that the oncologist will not treat Andy until he is discharged from the hospital. She won’t even meet with him until he’s out of the hospital.

Apparently – if I understood all this correctly – the oncologist does not get paid if she gives immunotherapy treatments at the hospital; she only gets paid if she does it on an outpatient basis. This is due to something about insurance. I’m not clear on the logic because it defies logic.

(I had no idea they were doing immunotherapy either – I thought the oncologist would tell us about the treatment plan in our meeting. I know the immunology treatment is supposed to be better if the cancer has a PDL1 marker, and this one does, and I only know that because the report is up on Andy’s “My Chart,” not because the oncologist has told us; and I know that there is a risk with immunology because Andy has myasthenia gravis, an autoimmune disease that may get worse with immunotherapy.)

I told Violet and the boys we needed to leave the house right away so I get could back to the hospital and straighten this out. It had to be a mistake. Not one person had indicated that Andy had to be discharged before he could be treated by the oncologist…..except that little comment this morning about how Andy needed to be out-patient for oncology….but she hadn’t mentioned he couldn’t keep the appointment.

As we headed into Burlington, I called the case manager, who didn’t answer and never returned my call. (It was a little after 4 pm when I left the message.) I called Trevor and Karen, who said this must be a mistake and I needed to raise hell to fix this.

I got back to the room and started to explain what was going on to Andy, and he didn’t want to hear it because it was too stressful. That’s why this is the first post I’m writing without approval from him: he knows I’m solving a problem but he’d rather not know what problem I’m solving. He’s probably thinking about his mortality, while I am compartmentalizing (I’m really good at that) and just plowing ahead doing what needs to be done.

My first resource was Molly, the day nurse, who was already my favorite of many great nurses. I told her what was happening and asked for her help figuring out what to do.

Then the oncologist’s scheduler called me and said they were moving Andy’s appointment from tomorrow, November 12, to November 20.

He was diagnosed 9 days ago. Since then he has developed a new lump I CAN SEE under his left should blade that is causing extreme pain. I am not a doctor but I do not think he can wait 8 more days (and neither does Alison, who is a doctor).

I yelled at the scheduler. I had intended to be polite because I am a firm believer that you catch more flies with honey, but I was all out of honey. I told her that yes, I knew she was calling to change the appointment because our friend Alison found out before I did, and that not one person had told us that Andy had to be discharged before he could see the oncologist, and that we would pack up everything now and leave against medical advice if it meant he could see the oncologist tomorrow, because this cancer has grown like a those creepy vines in Stranger Things and in every place we have images, and there are a lot of places we don’t have images for and the current trend does not look good for those places either. (Those un-imaged places include his brain.)

Eventually I transitioned from yelling to crying, not quiet crying but loud gulping-for-air-between-the-wailing crying. Molly the nurse came over and hugged me as I continued crying into the phone, demanding they get him an earlier appointment.

The call ended with the scheduler promising me she would talk to the oncologist first thing tomorrow and do everything she can to get the appointment scheduled earlier, and I am also going to get Andy out of here tomorrow morning because we need to get 24 hours between his discharge and the oncologist’s next available appointment, even if we haven’t figured out the pain meds and even though I haven’t even had one home health care provider return my calls. The choice seems to be Andy getting chemo and me (and other friends/family) giving Andy his meds and helping him move around and hopefully getting an oncology appointment this week; or Andy staying in the hospital and postponing immunotherapy.

I cannot believe this is happening.

Also I have jury duty on Thursday so after this I have to send a letter to the courthouse asking to be excused.

Also I got an email a few days ago that the space heaters that the boys used in their rooms and that I had carefully researched last year to find the safest space heaters have been recalled because they might catch on fire, and it’s getting cold so I need to find new decent space heaters ASAP.

Also Vermont doesn’t have paid FMLA so I need to start work again next week.

Also if anyone knows a home healthcare worker or two who will travel to Grand Isle, let me know!

In other news: Andy had a lovely day today hanging out with Jonathan Paley, Jonathan Richman, Ned Claflin and David Koechner; and later Jackson and Charlie. While I was out, Koechner tried out my bed from the last 8 days.

I had a great time with Violet too until I didn’t. I feel like a truck that was on a leisurely mountain drive until I went a little too fast, and now I’ve lost my brakes and need to find an emergency truck ramp.

At least my toenails and fingernails are pretty now.

Love to you all – thanks for rooting for Andy

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