Too much

The nurse warned me on Sunday that Rich's first day back in the office would be exhausting for him. She didn't mention that it would also be exhausting for me. I had to hook up his TPN earlier on Sunday evening so we could disconnect it before we left for the office. We took Ian to his first day at the JCC camp and that has its typical nervousness over a new place, but he was fine.

We got to the office and as soon as he walked in, his pouch from Sunday night started leaking. I had to change it while he was lying in his office. It's honestly all a blur now, like the fog of war. I remember driving to Churchland (holy crap, Churchland!) at 9:30am to go get supplies for his pouch. I remember having my conference call with Harvard in the car driving back from Churchland. I remember being annoyed they didn't have the supplies I needed so I had to improvise. I had cut the opening for his pouch and just as I was about to apply it, he started leaking from a new hole which made that pouch obsolete. I remember using the stoma paste out of desperation, even though I HATE it and feel like it rips his flesh off.

We went through three pouches at the office yesterday. And his pouch started leaking again at 5:30am this morning. I patched it and turned the alarm off for our sanity. We dropped Ian off at the JCC. I realized I had forgotten his lunch on the kitchen counter but "Call George!" worked so that my dad delivered it for us.

We got to the office and I had to change his pouch again. His skin is so irritated, I'm worried about it. It's very hard to get a good seal when it's actively bubbling fluid. It's not quite as high output as a bubbling rock water feature, but it's close.

My therapist Gary said that I was in survival mode and I agree. I can't think about anything else except for fistula output, stopping leaks, and if we should get 4x4 gauze or packing strips for his lower wound care. Remember that scene when Daddy Warbucks took little orphan Annie to his mansion and said that she was going to live there? One of the attendants asked her what she would like to do first as she stared in amazement. Annie blurted out, "Well, I think I'll do the windows first because then if it drips I can fix it when I mop the floors ..." and everyone laughed. "Oh, Annie! You don't work here. You live here!"

That's how I feel. I spend my Saturday nights on browsing for really expensive barrier rings and wondering if I can special order them.

Rich feels like this is all directly related to coming back to work but I feel like it's just bad luck, not having the right supplies, and the nature of the beast. If he were sitting at home, he would leak there too. The 23462 zip code does not produce more fistula output than the 23503 zip code.

I've tracked all his output for the last six weeks we've been home. Rather than see a steady decline, it's all over the place. Since this fistula and its high output keeps Rich from being able to eat anything at all, it's incredibly frustrating to not see noticeable progress.

fistula output

The last solid food Rich had was a McDonald's cheeseburger on Saturday night of Memorial Day weekend in Amelia, Virginia. That was 11 weeks ago. We're all just sort of frayed around the edges.

We did go to see Dr. Lee at Virginia Oncology. We like him so much. He said chemotherapy was something he was "luke warm at best about" and we agreed that it would only slow his fistula healing and probably not do anything to his slime. I showed him all the cell phone pictures I have from surgery and his wound care and he pondered them thoughtfully. Dr. Lee is going to confer with Dr. Bendell in Nashville and see if they can find either a trial we can do here in Virginia or an IV based trial until the fistula heals.

I haven't had a chance to research it yet, but he said there might be hope for an immune checkpoint inhibitor that would send a signal to the immune system to kill the cancer cells on their own. There has been some success in lung cancer patients and there may be a trial we can join. In the meantime, we just measure output, do lots of laundry, and hope for his fistula to heal.

I asked Rich before I left for lunch today if he felt like his pouch was okay and he said it seemed to be. It had only been a few hours so the damn thing should have been fine, but I'm gun shy. 30 minutes later he called me saying he was leaking everywhere. I left my food and raced back to him. The fluid is so acidic that in that one hour, it had eaten away at his skin leaving it raw and red. Everything that touched him made him wince. It was just too much. Too much in so many ways.

I called the Sentara Home Care office and said, "I'm not sure if there's such a thing as a fistula emergency, but there is now. We need help." The manager for all the wound nurses talked me through our situation and she'll come to the house in the morning with some new tools to fix it. I sent her cell phone pics of Rich's incision for reference. In the meantime, we went home, removed the pouch, covered him in Desitin and towels and set him up on chuck pads on the leather couch.

I am not a religious person. I don't believe there is some higher being that has any control over how quickly Rich's bowel heals. It just doesn't make sense to me. Even if that being existed, it would not be logical for it to worry over such minor details in the cosmos. But I did find myself lying in the dark at 6am, after patching Rich's leak, wishing really really really hard that his fistula would heal. The incision wound care is cake by comparison. The slime itself is manageable for now. But three liters of acidic bowel fluid coming out of a pinhole three inches below his sternum is just a little more than we can manage right now.

We have no other choice but to manage, though, and so we do. We put chuck pads under us, we surround ourselves with towels, I bury my face into his neck and wait for the dawn to come and another day with us together.

Recouping at home today