The doctors are going to try a combo of radiation and chemo on me this time because the cancer in the lymph nodes had changed. They have to be very careful of the radiation because I had it before, and there's a danger of killing tissue and bone in my mouth. The chemo has to work in tandem with the radiation or it wouldn't do anything.
I'm terrified. Afraid of the cancer coming back, afraid that the treatment won't help or will make things worse, afraid of never being able to eat again. Afraid of dying, and afraid of the process that dying would take. Last night I coughed phlegm until I thought I'd choke or drown in it, and slept very little, so of course I'm wondering if I'll ever sleep normally again. I feel like my life has been ruined, and for what? I have no risk factors for this. There is no 'reason' for me to go through this. I can't see what the purpose is.
I couldn't get through this at all without my good friend Diane B. She's been a sister to me through this.
Written in the rehab center:
June 15, 2017, Thursday
2 weeks exactly in the hospital. Went from ICU to SAC, which is out of ICU but still high-risk, due to a stomach infection I picked up and the trach. This is the second day in the rehab center - I keep trying to call it a nursing home - BAD first night but it's getting steadily better. Having occupational therapy, speech therapy, and physical therapy. Don't know yet how long I'll be here before going home. They wand me on the trach until the swelling goes down in my mouth and throat. I'll be on the feeding tube until I can re-learn how to swallow. My speech is really broken and I drool worse than a jowly dog.
That first night here was horrible. Sick, in pain, exhausted, arrived during shift change so nobody knew anything. Room had nothing as to supplies. No one had notes on what to do with me. Hard to get food and meds and basics like washclothes and towels. Since I can't make myself understood very well and they couldn't understand me when I pressed the call button, they didn't come quickly - sometimes not at all. By morning I was sleep-deprived and had gone through three adult diapers from diarrhea and nobody helped. But yesterday went better - day shift knew more - and today is better yet.
No luck on swallowing yet, but I've had a shower with a great deal of assistance, hair washed, had some walks and a very mild beginner workout. Slept better last night though I haven't slept well since the whole thing started. I still need to take the trach cap off and use the humidifier at night, and have to sleep pretty much sitting up.
Eating, talking and tasting will never be normal again,