I did break my own rule last night. I gave up a knee jerk reaction and posted a bunch of over the top bullshit that amounted to nothing. I got pissed off, and without thinking over what I really should have done. I took it over the top and told people that I was gonna stop posting anything about my Terminal Velocity. That was bull shit and I knew it, probably ten minutes after I posted all the stuff. It was wrong.
To all the people that read this blog on Facebook: I apologize. I was out of line, and very angry. It was foolish and I ask your forgiveness. I hope you'll give it to me.
The last week or so has been as close as I've ever been to shaking hands with death. I've been exhausted, I've been in some pain even with the added dosage fentanyl, and morphine. We (Hospice Doctor, Nurse, and Myself) have the chronic pain under control, and that's a good thing. But man, that acute, screaming, kick you in the nuts, bite a finger off, sudden stabbing pain, that's something else. The morphine will knock it out, and generally keep it out for a few hours. Saturday, no way it took care of it, the right side of my face was absolutely wearing me out. I had worked my way up to a full dose (40mg/1ml), every hour, and that barely squeezed it out. At the end of the day I was at the corner of Stoned and Out Of My Gourd, but the pain laid down. I did sleep almost 12 hours Saturday night into Sunday. What a difference a day makes. Yesterday it was 1/2 dose after the right side of my face started screaming at me. I took a dose every time the bone or muscle fired down upon me. I only took two all day. And I was awake at just a second before 0300 this morning. That gives me more than enough time to get myself ready for my day. I do believe I'm going to start trying to get to sleep around 2000 to 2100 hrs this evening. I feel better during the day. Although I'm absolutely worn clear the fuck out all the time.
I seem to feel as though I get these HUGE jumps in losing ground to the cancer. In retrospect, that's not how it is, truly. If I look at it closely, and not what I put in the blog or on Facebook, and if I do so honestly, the darn thing has been chewing away a little at a time since the beginning. If I REALLY want to look at it honestly I noticed some loss of energy and some extra soreness in my mouth and throat around the middle of June. About the time the wonderful Michelle Trant, SLP and I were making the biggest gains I'd seen as far as speech and swallowing was going. That would be if I were totally honest with myself. HA HA HA HA, the fuck I was. I ignored all that, mostly for myself, but also because it would have shattered Liz if I'd said anything without having solid proof. It damn near shattered her when they told us on July 8th they found a spot again. After the PET scan, I didn't even pay attention to where it had spread. I figured it was all over. There was also nothing they could do to clear it up. I asked about amputation and replacement with a much more handsome face and head. They said that wasn't an option. I'd think they'd want to get that kind of amazing surgical miracles, and how much of humanity that could be saved. Although, there is a fear that I might have gotten a head from Abby Normal. Those things, though, only happen in Mel Brooks movies.
Yeah, I'm actually worn clear the hell out. I can't stay awake, my strength is waning, and if I'm not looking too closely, my wind is also going south. I'm certain that my time is coming, I just don't know when. I'm not so sure that anyone should really no when they are going to die. Would you go crazy with fear? Would you do full time wild and out of control behavior, in trying to do the things you hadn't yet? What would suddenly become your priorities? Do all you could for yourself? Or all you could do for your family first? The Dr's have all given me a year, give or take, until I'm bust. I feel like probably less, and have since they gave me the prognosis. There are a lot of reasons I felt that way, and still feel that way. It's difficult for me to put into words why I feel that way. It was a combination of things. I couldn't keep my pulse rate down like I wanted it even with going as fast I as I could on the treadmill. Even missing part of my quad, I was able to move along at a decent clip, but my pulse wouldn't lower and my breathing was getting worse all the time. Even with the Tracheostomy tube and ability to breath through my mouth and nose, I couldn't hold my pulse or my breathing to the control I wanted. I also was increasing my bodily pain by 3 fold. I kept at it until the pain got to the point I couldn't sleep at all. And while I could get away with two to three hours a night, if I got a good power nap of twenty minutes. That wasn't happening since I went under the knife. A lot of the things some people take for granted, and even some with the same surgery I had, didn't have the same problems. As a rule, most of them could still swallow as long as they didn't have a fistula that leaked food or liquid into some place it shouldn't go. Mine was compounded that radiation therapy had turned a goodly amount of my throat to hardened (not strong) tissue. When you add in the dead quadriceps muscle, the infection that the necroses of the the tissue caused, and subsequent surgeries, my throat had no chance at all. We'd just gotten a bit to swallow, and it was going better all the time, when I had my first reconstructive surgery.
Ooops, cancer!! And the extra surgery put me back at square one, and I worked at it like it was back at square one. Although I finally had to say "enough". The pain was causing me to lose my lunch right up through my mouth and sinuses. Yes!! I puked. It's hard on me to do that, and even worse now. So I backed off. I think, maybe (or at least imagine) that I can swallow just a touch. Anyway. That's my story and I'm sticking to it.
Yep, I'm closer now to shaking hands with Death than I have been in the past. And it's not just the addition of time that's put me in that position. It's just a fact. I bleed more, I cough more (and more of the sputum is pink or bright red), and I'm so tired I have to nap more.
And yes, to all you who support me, and are a huge part of keeping my drive to live going, I'm sorry.
I'm sorry I allowed myself to fall into the same old trap I tell people not to step into. I did and I wish I hadn't. This is one of the times that I can wish in one hand and shit it the other, and we all know which one fills up the fastest.
When I was, oh hell, nine or ten, I see my little brother (he would have been 5 or 6) hauling ass around the corner of the house screaming. He wasn't doing anything to get in trouble for, just playing in his sand pile. I started walking over just in time to see two kids my age chasing him laughing. Chris Herman (across the street neighbor) and Bill Jacobs (across the tracks north of me, and 5 or so blocks away) were chasing him hollering they were gonna beat his ass. No one beat Clay's ass but me. He ran past me, then turned for the front door. Chris Herman and Bill Jacobs stopped and told me they were gonna beat Clay's ass for throwing sand at them. I asked what they were doing in my yard to begin with. Chris took a swing. I busted him as hard as I could and split his lip. Bill ran off. I'm still outside screwing around with changing a tube on my bike when Herman's big brother Bill came and asked me why I hit his little brother (Chris and I were the same age). I told him the story, he told Chris he was a pussy. An hour or so later, Bill Jacobs big brother Jeff came over. He told me Bill said I was gonna whip his ass for fun. No, that's not quite right, and I told him the story. He asked me if I'd fight Bill right there. Hell yes I would (I couldn't take Jeff Jacobs, he was 3 years older and looked huge) but Bill ran home. All's well that ends well. Or so I thought. Shortly after Bill ran away, Chris Herman came over with his football uniform on (no, we didn't have Pop Warner or any other little FB league in that town, we got ours from Sears-Roebuck Christmas Wish Book) ready to whip my ass. Chris's brother Bill ran out the front door of his house about the same time I grabbed Chris by the face guard, yanked him to the ground and literally kicked his ass until my foot hurt. His brother was laughing his ass off. He even followed me to the gas station, bought me a coke and a bag of peanuts. Not a bad day in the summer of 1969 or 1970.
Addendum: In the summer of 1982 I took my scooter on a road trip through Hays KS to see some buds, and through where I'd lived as a kid. Kind of a nice trip back in time. As luck would have it, I ended up in Gorham, mid afternoon of the evening they were having a town party in the park that used to be part of my yard on the south side of US 40. Some of the German heritage boys I went to school with turned into some big mother fuckers. I was no weakling, but I was just under 6' tall then, and those guys, for the most part, towered over me. Bill Jacobs had gotten a snootful and wanted to arm wrestle. It's not hard to beat a drunk wrist wrestling. Gotta remember, I was still working the pulling unit. I wrenched every rod we had when there was a new string to run, and was working derrick as well. So, I snagged Bill down 3 outta 3, and he was cool with that afterward. Chris Herman, on the other hand, wasn't so forgiving. He wanted a fight and wouldn't take no for an answer. What I was trying to do, was make him so mad his drunk ass would fuck up and give me a shot and either kicking his nuts up into his mouth, or hammer his nose so hard he had to unzip his pants to sneeze.
I asked him "Do you need time to go get your football uniform on again? Or are you ready to go right now?" Oh Christ, he went practically purple with anger. Not with me though. There must have been 30 people at that set of tables who heard the entire thing. They either saw the original fight with the football uniform or had been told about it. They were laughing their asses off. Chris got so mad he couldn't see fucking straight. Perfect for a fight, if you're the one he wants to fight. Even more perfect if you can sit back and watch him stagger home. Almost like he did when he was 10!!!