Yep, I missed several days, in fact. The infection I had that swelled my neck so tight the skin ruptured along an old incision from last January 22. It dawned on me that the reason it went so deep was that the left side of my neck, just behind my ear, was the area they cut out a tumor that wrapped itself around my carotid artery. Yeah, that was a touchy spot, according to my surgeon, then to catch an infection around that same area made me a bit goosy. So, to recap. In five hours time on a Sunday, my neck went from fine to so swollen I actually called Hospice to get someone to look at it. We decided to wait until Monday. I got a little lymphedema therapy and that helped with some of the swelling on the right side of my body, we stayed away from the left. A Hospice Nurse came by Monday afternoon and I was given an antibiotic to be on the safe side. By now the swelling was bad enough it affected my breathing. I fell asleep about midnight, but was awoken at 0200 or so by a horrid smell and a damp feeling on the back of my neck. I got up to check, and the skin on my neck near that incision had ruptured and was just pouring a terrible smelling, dark, and bloody mix clear down my back. It had been contained in a jacket I had on because I'd gotten chilly before I fell asleep. So, two towels later, a shower, and an improvised washcloth to catch and absorb the drainage, I relaxed a bit. My neck didn't hurt any longer, and it was visibly shrinking as the drainage continued. I am really hoping I can dodge that again.
So, 2013, it's been a bitch. I'm a little surprised I've made it this far, considering the days I've had when I stayed awake for fear I'd die in my sleep and be found by one of the kids. But I have made it this far, with the support of my family and what seems to be about a bazillion friends. It's certainly made it a much easier road for me. I've pledged to be honest in my blog, and I hope that as the last six months of me doing this has been honest. I also hope that it's helped people understand enough so if this befalls them or one of their family, they aren't afraid of the unknown. Fear is a killer, it freezes you, it takes away the critical thinking you need to do to keep your focus. I'm here to tell you, it's fuckin A hard to keep a decent attitude all the time, or even a majority of the time when you can see yourself loosing a little ground at a pretty consistent rate. And there are the days when I feel like I could still be out throwing heavy shit with my friends, and then they are offset by days like yesterday, when I wish someone would just shoot my ass because I feel so rotten. It's a roller coaster, no doubt about it, but it still beats the alternative, even on my worst days.
So, in review of the year. I had such high hopes and goals going into January 22 when we did the first surgery. The plan looked like the cancer was pretty well centered in a small area of my palate and a bit of the base of my tongue, possibly my jaw. Yeah, right. It covered my soft palate, my entire base of tongue, about 1/3 of the left side of my lower jaw, clear up to where it ties into your skull. It was in four lymph nodes on the right side of my neck, it had wrapped itself around my left carotid artery. Jesus, it had just blossomed and hidden itself so well even the PET scan didn't pick it up. Part of the repair they did when they took a huge chunk of my right quad out to replace my jaw, up and died. It left me with a bacterial infection. They shoved my left pec into that spot, but all the surgery and bacterial infection took away my ability to swallow. I had a fistula that ate it's way from inside my mouth to just under my jaw. Anything I tried to swallow spewed out that hole. I count this as a major set back. That and that they didn't give me any PT to work on, and lose of muscle to atrophy and lack of use. Setback.
Well, that shot me down on going back to work in May, I figured August. We started some work with PT and an SLP (both of the ladies are wonderful, and I am so grateful that they were there to help me) and things actually started to look up. I began to swallow a little, and even showed it on a modified swallow study. It wasn't a lot, but it was a start. I could talk so much better. When we started only about 5% of the words I said were understandable. When we decided enough was enough, I was up to 80% if I took my time speaking. May comes along and it's time to go back to MD Anderson for three or four appointments and a CT. Hell, I was clear, the doctors were all happy with my progress, and we set up a date of July 7 to do the first of my reconstruction surgery to help make my face and neck look more normal.
The reconstruction actually worked, with the exception that they found my cancer had come back. Two weeks later I'm back for a PET scan and doctor appointment. Yep, it was back, and back in a big way. there was nothing they could do, chemo was no longer going to be a cure, surgery was out since they'd already cut out all the could shy of decapitation. Radiation was out as well, since I'd had so much in 08 and 09 that anymore would kill me faster than the cancer. It's a damn hard thing to hear Palliative Care, and see the woman you love get a sick look and start to cry. Worst part of that entire ordeal was seeing it make my family cry. My job is easy, get good drugs and die as pain free with as much dignity as I can muster. Everyone else has the tough job. Learning to get by without me, which I figured they could do on a physical level. If my dying upset them half as much as it did me, it was going to be a rough go for the family.
So, that's the bad shit. There seems to be a lot of it huh? What isn't seen so readily is the really good things that come out of this shit storm. My family is finding out for themselves what I knew all along. They have strength and depth of spirit they didn't see in themselves, but I could. Liz asked me once to start showing her how to do things around the house. Like running a roto-rooter. Once a year about this time we seem to have to run it, no big deal, but I've done it most of the times since 1999, and Liz has helped. She can do that now. She can fix and replace a lot of things I don't believe she even knew she could. She's a good student, because she watches closely, and ignores me when my temper gets the better of me. She's strong, physically, and more importantly, mentally and spiritually. I know she'd rather I'd be here, fuck me so would I, but she's going to be a fabulous Patriarch of the family. She's going to be so much more than just the leader of the clan, that I don't think she or the kids and grandkids can even grasp how much she is going to be relied upon. This is good stuff, trust me.
I had time to get with Liz and settle out how we wanted my shake and bake done, and that's a little weird. We got my will taken care of, including DNR, powers of attorney, and all the little crap that goes along with having a will. It's crazy that to satisfy the laws of the state you have to have so much bullshit thrown in. You can't just say "She gets it all", and this is, perhaps, the reason people put off having a will and all the fun that goes with it, finished. Get it done. We'd done all the shake and bake stuff, got all the Will and other legal papers finished, and at that point, Liz cried. It made the other three lovely ladies that helped with all the paperwork, and who were witnesses, cry as well. Liz told me it was the real capper to all that had gone on and made it a reality. Get it done anyway, don't wait, it'll be so much easier if you're not looking at dying when you get it done.
It's a good thing that I've had time to get around and see friends. I've had the opportunity to go to a couple of Highland Games to visit folks I probably won't get to see again. And they all had a part in making my active life so much fun, it was wonderful to get the chance to be around them again. I only wish I could have been more help. It turns out that all that walking, standing, writing, and answering questions wears my ass out. It's worse now, but two months ago it was a challenge, but not so that I couldn't work around it. It was a time that Liz co-workers donated their talent and time to put together a tee shirt to sell, with an awesome logo, for Liz and I to sell to make up for some of the travel expenses we incurred while I was in Houston, home, back, home, back, so many times in a row. We had it down to an art. Leave late in the evening, drive throughout the night, get to Houston, crash in the MD Anderson lounge a while, do the appointments, then drive home in a day. Long trip, saved on expenses. If I could have stood the long drive in the little Audi, it would have saved a lot more as well, but that shit wasn't happening after I had surgery.
I got the chance to renew some old friendships, and that kids is probably one of the best things that happened. Some of us only hung out a little, or talked when in class in High School, and as it turns out, we probably would have had a riot if we'd hung out after high school as we grew up, had families, and started seeing them have families. What a party this life has been, and still is as far as I'm concerned. I don't really want to leave, but that's out of my hands now. That pisses me off worse than anything, that I'm not in real control over what the damn cancer does. I never did like this no win bullshit. I've always managed to get in some deep shit, and turn that around where I didn't lose. That makes this hard for me to accept, but I'm working on it. Friends have helped Liz get along, and I'm betting they will be there long after I'm gone. Friends also, whether they know it or not, carry some of the burden for me. I'd normally never tell anyone that, but it's getting close enough they need to know they help me a lot. Another good thing.
The Short Take on work. Yeah, I've not worked in over a year now. This sucks dick for skittles to me. I'd just hit what I really considered my full stride. I was getting pretty damn good at what I did, I liked it, I put in a lot of hours, but they were all worth the time. My boss liked what I was doing, and what we were trying to accomplish with the position, and it was working to a tee. That's come to an end for me, but not for the people I said should have my spot. The first guy, God, I didn't have enough time to even get him set up properly, and I feel badly about that. He sucked it up, though, made the job his and was good at it. They put another kid on to help him out, he's doing better all the time. The first guy got promoted to a production tech, he's watching work overs, completions, and general well maintenance with pulling units. He's gonna be good at that. The kid they put into his position is dating one of my Hospice nurses. Small world, and he's a damn fine kid. He'll do well. I'm very proud of all the guys I worked with out there. From a really rough beginning, to this point, they've done yeoman's work and have a place that is great to work in. The Foreman and I had some words occasionally, but we never let that get ahead of us, or hold a grudge with one another. The reason is, we both wanted that field to be a showcase for reworking really old equipment that was thrown together half assed, and turned into a cleanly built, well working set of batteries. No small feat, I can damn well attest. The people we had where perfect for the time they were there. Shit fell into place like no other company or field I've worked in since 1975. I could not me more proud to have been associated with those guys if they'd been my own kin. I miss that place, and that comradery that goes along with it. I hope as they move forward they don't loose sight of that.
So yeah, 2013 I guess is a mixed bag. I don't have a clue how much time I've got left, and tomorrow I'll talk about some of that going forward. I've written the final blog, one that someone will have to copy here for me. I'm hoping that's not tomorrow, but we'll see.
See you all again in the new year. Make 2014 your own, rule that shit like it came to you naturally, see the success you want, and make certain that you take time to live a lot.
