The cancer came back with a vengeance

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,

Post-cancer surgery

I had my cancer surgery May 31st, and spent 2 weeks in the hospital, and nearly 2 weeks in rehab. They resectioned my tongue, patched it with a piece of my arm, and then patched the arm with skin off my leg. It's now June 25. The leg is healing enough that the dressing is nearly gone, though the skin is still bright red. The arm looks like Frankenstein and must be covered for quite a while yet. My face and neck are still mostly numb. The doctors had to take a lower front tooth to have room to split my lower jaw open. Now my teeth don't match up right. The patch on my tongue is numb still. I can't swallow yet and will be fed through a tube in my stomach for the foreseeable future, until I can learn to swallow again, if ever. My perfect diction is gone forever, replaced with a garbled speech that requires therapy, and my storytelling days are over.

The tracheotomy tube will come out tomorrow, thank God. I'm hoping the phlegm and coughing subside. I haven't had more than 3 hours sleep at a time between coughing spurts since this began. In addition, something in all this gave me fecal incontinence. That has blessedly eased up. And my type 2 diabetes is now insulin dependent. I've learned to give myself the shots.

Okay, God, I know you think I'm a badass, but enough already.

Wrote this 6 days after surgery:
June 6, Tuesday.

Weird sounds the machines make. In ICU, it sounded like music; cartoon background music from the old Bugs Bunny-type cartoons, and circus music. Yesterday in here one machine sounded like a plover, and I was visioning the seashore for a while because of the hiss of the oxygen machine. Today it sounds like some deranged jungle bird. Wa-hoo, wa-hoo, wa-hoo, then a trill/giggle that is very disturbing.

Saw Rev. Sue this morning, and it was a busy day. They took out the nose feed tube and one of the drainage tubes. The nose feed has been replaced with a stomach feed. Also had a bed bath - finally clean hair! It was disgusting! So good to have it washed. They seem really worried about my blood pressure - it's never been high but evidently now is.

Krys and Diane are going to come by later. I've heard rumors I might be getting a smaller trach tube. I don't know how that will work with all the thick mucus. Trying to cough it up is scary - I feel like I can't get a breath, like the mucus is blocking my air passage.