Tuesday, January 21, 2014

January 22, 2013. A Day That Will Live In Infamy. At Least for My Family And Myself

  Earlier I'd said I'd have something for today, that it would take me some time to get my mind it the middle. I've got it as close to the middle as it's going to get.

  Today, on this Tuesday, which last year would have been the 22nd of January, Liz and I were herded back into pre-op at about 0530, give or take, and before I knew what was going on, I was out and on the real operating table.; Beginning the first trek t beating the cancer that had come back with such a vengeance just a couple of months before. I'd gotta the word from my ENT, taken a trip to Houston. Wrestled with getting set up at MD Anderson, because one of the Dr. in Midland told me to just go up. It took sometime to get a referral, which MD Anderson worked with my ENT, who was vacationing in the South Pacific. Diagnosis? Surgery, but it would be mid-January at the earliest. I got some chemo therapy (fortunately they sent the protocols to Midland) with the Chemo running from the first of December to the first of January 2013. It was harsh, extremely hard on my body, and in the end, all it did was keep my tumors and growth points to a minimum so I didn't choke to death before I could get it cut out.  The Surgeon met with us briefly Monday. He says "We can get all of this now, it's showing some growth in places it hasn't before. Possibly on your left jaw. 'Into the bone?'. Yes, in the bone itself. There are spots, on your soft palate, and in a couple of lymph glands on the right side of your neck. Looks to be possibly four hours maybe six of surgery"
Turned out to be more like eleven or twelve. It got complicated when they got in. The sneaky shit had popped up and gotten into places that it hadn't shown up on the CT's or PET scans. Yeah, so I lost my left jaw, from just left of mid point clear to where it ties in to my skull, all of my soft palate, (no way to keep things out of my nose and sinus if I throw up), all of the base of my tongue, a few lymph nodes on the right side of my neck, and one nasty tumor that wrapped itself around my left carotid artery. Part of my right quadricep had been given up to form a muscle flap that replaced my jaw, and to give some form to my face. It would take several surgeries to make it more like a platform for my mouth when the time came to get dentures.

  So, that was what happened. It was the beginning of the trip toward Terminal Velocity. We didn't know that at the time. All of us were very optimistic at the time. I'd done well in surgery. I remember waking up in my room with people holding my arms down so I didn't try to yank out the feeding line that was in my nose, the IV's, and anything else that had attached itself to my person. I didn't use the pain killer much, because honestly it just wasn't that painful. I was swollen like a tick, but that was more troublesome than painful. I had to get up and move, they wanted me to walk (which at first was very painful), and to sit up in the chair that was next to my bed. Which I did. Liz was with me every minute she could be. She left to eat, she left to walk, she didn't leave very often. MD Anderson allows one family member to stay with you in your room. My older kids had come and visited after surgery, and then they had to go and resume their lives. My youngest kids had stayed home. One was still in school and needed to be there, and I'm very proud of my youngest daughter who stepped up and took care of her younger brother for us. I'm not certain what we would have done without her. So we scoot along.
  Third or fourth day the came in and yanked my trach. I discovered I could breathe again without it. That was sweet. Only, I was beginning to think there was something not right with the muscle in my mouth. They kept getting a pulse on the machine, I could hear it myself. But, every day it got worse. I got a fistula from inside my mouth to one of the stitches in my chin. They packed it with gauze. It was huge. The next day, my surgeon comes in to cut me loose from the hospital. I told him something was wrong with my flap. Upon closer examination, and after pulling the packing from the fistula out, (the smell of death and infection was incredible) determined that I needed the flap removed. In fact, he called the reconstructive surgeon who was there pretty quickly. The flap had died, and was causing a wonderful bacterial infection. Surgery followed nearly immediately, next day, in fact. I got 3 or 4 different kinds of IV antibiotics, and headed to ICU right after the surgery to remove the dead quad muscle and replace it with my left pectoral muscle. It's still there. It doesn't have to rely on a new blood supply to live, it has one of it's own built in. The, within a week, I went in for a wash out surgery to clean the up the rest of the infection. Everything was totally different this time. I could barely breathe without the tracy, I couldn't swallow at all, and my face was incredibly swollen. It was also on this little soiree that I died on the table. Coded out. Croaked. They brought me back. Seems a different muscle relaxant caused me to stop a bit of everything, breathing, heart beat, all of it. Didn't last long, but it must a been a good un. I woke 50 kinds of sore, apparently this time I fought them all from end to end. Back into ICU. Then, magically, home for a week, then back for a check up. It went well enough. From the time that I went to Houston the week before to tackle all the pre-op check ups, until we were home for a spell was 30 days even. I got there the 13th of January, home to Midland February 12, 2013. There were another five or six trips back to Houston. Maybe more, I lost track. Reconstructive surgery was set for July, as I'd gotten an all clear from the PET scan in May. Turns out the cancer came back between the end of May and the 7th of July when it was found.

 As the surgeon told me at our first meeting in November of 2013, if this surgery doesn't get it, or if it comes back, there's nothing more we can do for you. Funny, it turned out that way. Had it not, look at all I would have missed.

(1) I'd missed not being able to swallow
(2) I'd missed being in pain a lot of the time, even with pain patches and morphine
(3) I'd missed getting weaker
(4) I'd missed getting this blog started
(5) I'd missed hitting Terminal Velocity
(6) I'd missed having my daughter and grandson living with us
(7) I'd missed seeing my son play and march at a game. And begin to become a man
(8) I'd missed having my son marry a wonderful woman
(9) I'd missed the times I've had with Liz, good and bad over the last year plus

I'd missed all that because I'd been dead. The only way to see all of that would be to be to do things exactly as they happened. The next time someone looks at you when times are incredibly tough, when you're beaten completely into the ground, but you keep getting up, and they find you can't be taken down or kept down, and someone foolishly asks "would you do it all the same way if you could do it all over again"

 There's only one real answer: You fuckin A, dumb ass, I would. Is there really any other way?

Because they only see what matters to them. They never, ever see what you can see. Only for themselves. They miss the journey you're taking. Could be that they are missing all in life they could possibly have.

Hugs, it's been a long day.

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