Day 14

Michael is fourteen days post-transplant.

Several days ago everyone who entered Michael’s room said some version of, “The next 3-4 days are going to be the worst.” I’m not sure that was especially helpful as there was really no way to prepare for how awful it’s been.

A known, expected side effect of the transplant process includes something dreadful called mucositis. This is when the lining of the entire digestive tract becomes inflamed and begins to slough off, leaving raw, painful sores in your mouth, esophagus, stomach, and bowels. Whatever you can imagine it’s like, it’s probably worse than that. Mucositis is the byproduct of the full body radiation before the transplant plus the high doses of chemotherapy immediately following. 

This is one of those “the only way out is through” situations, made dangerous due to the risk of infection which comes from any open wound coupled with a lack of functioning immune system. Michael’s neutrophils (the first responders to any germy invaders) are hanging out at 0.06 this week. He’s got nothing to fight anything off with.

Mucositis is generally treated with a numbing, antiseptic mouth wash for the sharp awfulness going on in there (think a whole mouthful of canker sores), pain relief medication options starting with Panadol/Tylenol and going all the way up to morphine, and getting all needed calories and nutrition via the Hickman Line/IV to give the digestive tract a small break when swallowing and digesting bits of solid food become impossible. 

Michael has availed himself of all these options to manage the awful physical side of it, but there was no accounting for the emotional impact of the above. He’s now been in insolation for three and a half weeks. With only one visitor allowed at a time for two short sessions per day, it isn’t only physically painful, it’s heartbreakingly lonely. Going through all this separated from most human contact for twenty-two out of every twenty-four hours is more than difficult, it’s torturous. 

Each new phase of this cancer journey has felt like the worst. We know there are other things still to come, some grim but temporary, some horrible and potentially permanent. There is no time to contemplate any of that as just getting through today is brutal enough, thankyouverymuch.

In the middle of these “3-4 days of the worst,” Michael had a scary, unexpected fall. Slight dizziness on the way to the bathroom made him think he should sit down, but before he could act on the thought, the floor rudely rose up to hit him in the back of the head, hard. His platelets (the things which make our blood clot when we get cut or bruised) have been hovering around ten (normal is 150-400, emergency is anything below 50) and he’s been on round-the-clock concussion watch with a movement alarm on his bed to bring the staff running when he gets up… all in addition to everything else going on within his body.

This morning I held Michael’s hand through my own gloved hand, reading him a short Stephen King story about teleportation as a distraction while a nurse changed the bandages on his head. He fell asleep and I sat very still, quietly praying, listening to him breathe until the visiting hour was over.

Queen Mary Hospital is too far to easily make two trips home and back in a day for both morning and evening visiting hours, but this morning the doctor said today was probably the worst day for the mucusitis. It’s likely about to peak and may begin to improve over the next couple of days. Michael didn’t need to ask, I knew today would be a two visit day.

I’m currently sitting in a coffee shop, killing a few hours nearby until evening visiting hours when I’ll return to hold Michael’s hand, and maybe finish reading the short story aloud until he drifts off to sleep once again.