I am tired of going to bed crying and waking up crying. It is now week 7 in the hospital and it feels like I’m not any farther along than I was in week 1. For some reason my body refuses to heal, and each time they try to repair my face, it fails. For the last three weeks I’ve been watching the “hole” in my cheek expand, and there is now a complete split from my lip to chin. It is like something from a horror show. I can’t eat or talk (not sure which is the worst) and I have sores in my nose and throat from the ng tube (which has had to be replaced 3 times). Hopefully on Thursday I’ll be getting a g-tube inserted so I can receive nutrition directly into my stomach and I can get rid of the ng tube (which goes through the nose into the stomach). I can then “feed” myself and get some extra calories in. (I have lost ~15 lbs in the hospital which also affects healing.)
And there is a plan for the next step. The surgeon will attempt to reconstruct my face with a “PMFF”, pectoralis major muscle flap which takes the muscle/tissue from the pec area and bring it up into my cheek. It seems to be the best choice at the time and the hope is that I would have a new cheek and a mouth that can function. He says he has never had a PMFF fail, but then, he’s never had a case like me either, so …. Even if this works, there will be more surgeries ahead to do more repairs and dental work (most of my bottom teeth on the right side were removed when they reconstructed the jawbone). But now the question, is when will this get done? I am hoping next week, but things have moved so slowly, and the plans have changed so many times I don’t have a lot of confidence in that timeline. If it doesn’t work there aren’t a lot of other things to try, and they may try to make some kind of prosthetic to cover up the defects. But as the surgeon says, the worst isn’t having a missing cheek, the worst case is that the cancer returns. (We had considered using some hyperbaric oxygen therapy, but if there are any microscopic cancer cells still there, this would encourage their growth.)
I am finding the whole experience so strange. I’ve got a few day passes and am able to go out and do things, and actually feel normal except for the fact that I’m missing most of the right side of my face and I’m bandaged up like a mummy. (Well, and the constant discomfort and pain.)
That’s it. I am just going day to day, and working at persistence despite discouragement.
Thank you to everyone who are reaching out, through prayer, texts, calls, etc. I don’t have the energy to reply myself, but I want you to know how encouraging it is, and you truly are helping me through this.
Some photos proving I’m not always crying
And to close, I want to share a beautiful poem a dear friend wrote. It articulates how I am feeling and I am particularly struck by the idea that I could see the approaching clouds as “swollen with promise”.
A Voice from a Cloud
I wish I could restore
myself
like when the rain pours
down
on fields and gardens
enlivening plants
that are drooping
disconsolate
If only it were as
easy to
animate my spirit
plenish my soul
so that
each approaching cloud
seems swollen
with promise