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.
Tuesday, December 31, 2013
Saturday, December 28, 2013
Way Early For A Blog
Yesterday I was "too late in the day" for a blog, today I'm "Way Too Early", now the Universe is once again in balance. That's a good place to be, in balance. I keep wondering when that's gonna happen with me. When I get to the point I'm panting to feel like I'm getting enough air, I do two things. First I hook up the O2 machine and inhale a bit of that, and I take a little morphine. According to my Hospice Nurse, Morphine slows everything down, enough that I don't need the O2 machine running any more than is necessary. I even have a little bottle that I can load up in the car and drag along with me, not cool in the least, but handy if I hit a point where I need the extra air. One thing I dislike about the morphine is how out of touch it makes me feel. I see people talk, I even hear the words they are speaking, but most of the time I can't make heads or tails over any of it. It makes me feel heavy, as well, and I sleep more than usual when I'm taking it. I suppose in there somewhere is the silver lining. It takes my pain almost completely away. That's a good thing, and I sleep better, as well as more often during the day, that can't be all bad.
Oldest Boy and his family are in town as we speak. We got them a room so everyone would be less crowded. Family crowds are about the only crowd I can stand. Did we argue and the like? Well, duh, we are family. I get nervous in a crowd and if I can't see the doors in at least one place I've been served.
Just like when we used to go to my grandparents, he is going to do some of the Honey Do's I can't anymore. At my Smith Grandparents, my dad and I either split wood for my grandfather and our selves, or worked on the other relatives cars, or both. I liked doing stuff like that, being the guys that could fix about anything our own relatives couldn't fix was pretty damn cool. I hope Chance gets a taste of that this visit, and enjoys doing it, because it's a nice feeling. Although these days, there is much a shade tree mechanic can do without a plug in diagnostic machine They didn't used to be cheap, I've not priced one n around 10 years. Then there's updating it every three to six months so you have all the possible tech updates. It's not cheap. One year at Christmas my Uncle Bill had this Maverick Grabber, 1972-75 maybe. It had a 302 CI engine (5.0 liter for the folks that never saw cubic inch) which made the little light bastard an ass grabber. He was talking with Dad about why it might sound like it's missing on a couple of cylinders. He'd taken it to the Ford dealer locally, and they showed changing all eight plugs right before Thanksgiving, and he'd taken it back twice because it still missed. Dad throws the hood up and sure as shit, six shiny new spark plugs. You couldn't see the far back two (#4 and #8 cylinders, one on each side). Pop grabbed the owners manual, it showed having to take loose the motor mounts, and turning the engine one direction or the the other to get to the far rear plugs. Here I go, under the car to hold back up while Dad loosened the motor mounts. We turned the engine, and sure enough, one of the plugs has cracked ceramic, the other one is just worn out. We got new plugs, adjusted the gap (32/100's on a feeler gauge, if memory serves) put everything back, tightened up the motor mounts and fired it up. With all eight firing right, the little bastard really was a Grabber, Ford wasn't fooling with the name on that one. We have several smaller projects that I couldn't get done in the last year for some damn reason. Chance will be a big help
Liz and I are out at a little cafe called Addie's. Not only is it my baby girls nickname, it's a nice little place to eat breakfast…..at least Liz is getting to eat. While we were gathering up our shit to get out the door, I ran way short of breath. Didn't take morphine, I can't drive if I take it, so I had to get a big hit of O2. (sigh) what a pain in the ass that is, and makes me feel far older than I am just to even put the tubes in my nose. No, not all the way, that would be silly. I get home from Addie's I'm gonna have to have some morphine, dammit.
Okay, some time back my little brother mentioned me starting a Novo engine. Dad was taking down an old rod power for a small oil company so they could sell the parts. This old Novo engine was a starting engine for he 40 hp Ajax that drove the rod power. It was unique because dad said, after seeing hundreds of the Novo engines, this was the only one that had a radiator. Yeah, I started it. Even after I was told not too. Mostly because it wouldn't run and acted froze up. The engine wouldn't turn over.
Dad goes to work one Saturday, Mom was doing her thing, and I was up at 0500 and snuck off the to equipment shed. Shed meaning an 60' X 80' steel butler building for storing a ton and a half truck and a really old Gleener combine. I go out to the shed, gather up the tools I needed and was about to drain the radiator when Clay came in. "Dad's gonna be mad". "No he won't dipshit, if you keep your blabber mouth shut", says I. Drained the radiator into a couple of 2 gallon jugs, pull it off, and finally see what I needed to see, the exhaust port on the side. Took off it's little muffler and got to work. I pulled the head and saw right off what the problem was. The exhaust valve was stuck shut, and the intake valve had some kind of crap around it that made it unable to close, and the same gunk had it plugged off. I got the valves out, being damn sure I put all the parts I took off in reverse order on the floor so I could put it back together when I was finished.
Some of you guys are going to laugh, I got the hard crap off the valves with a wire brush and cleaned the rest of the inside of the head, and checked the cylinder top, which was real shiny much to my surprise. Here's where some of you are going to laugh. I had valve grinding compound, applying it liberally to the valve and the valve seat, I spun the piss out of the dart until it quit sticking in a couple of spots and turned freely. Got it all back together, checked the water level, refilled the carb glass with clean gasoline, drained the old fuel tank and cleaned it, refilled it with clean gas. Put all Dad's tools up and got ready to fire the little one lunged devil off. It used a hand crank, so I sat the engine skid on enough cement blocks so I could spin it without breaking an arm.
Just like Dad said, once through, then right up against fire compression, backed the crank back a hair, the pulled it through once hard. Damn thing fired right the hell up. Sunday Dad went out to see what the problem was with the engine. I started it while he was looking for his tools. Best way to avoid the ass eating for not listening is to have what's busted working before Dad got to it. Except that engine. Strangely he was going to use that to tinker with, like a bit of mental therapy after a 90 hour work week. Hmmmmm, the ass eating wasn't that bad
Love ya
Oldest Boy and his family are in town as we speak. We got them a room so everyone would be less crowded. Family crowds are about the only crowd I can stand. Did we argue and the like? Well, duh, we are family. I get nervous in a crowd and if I can't see the doors in at least one place I've been served.
Just like when we used to go to my grandparents, he is going to do some of the Honey Do's I can't anymore. At my Smith Grandparents, my dad and I either split wood for my grandfather and our selves, or worked on the other relatives cars, or both. I liked doing stuff like that, being the guys that could fix about anything our own relatives couldn't fix was pretty damn cool. I hope Chance gets a taste of that this visit, and enjoys doing it, because it's a nice feeling. Although these days, there is much a shade tree mechanic can do without a plug in diagnostic machine They didn't used to be cheap, I've not priced one n around 10 years. Then there's updating it every three to six months so you have all the possible tech updates. It's not cheap. One year at Christmas my Uncle Bill had this Maverick Grabber, 1972-75 maybe. It had a 302 CI engine (5.0 liter for the folks that never saw cubic inch) which made the little light bastard an ass grabber. He was talking with Dad about why it might sound like it's missing on a couple of cylinders. He'd taken it to the Ford dealer locally, and they showed changing all eight plugs right before Thanksgiving, and he'd taken it back twice because it still missed. Dad throws the hood up and sure as shit, six shiny new spark plugs. You couldn't see the far back two (#4 and #8 cylinders, one on each side). Pop grabbed the owners manual, it showed having to take loose the motor mounts, and turning the engine one direction or the the other to get to the far rear plugs. Here I go, under the car to hold back up while Dad loosened the motor mounts. We turned the engine, and sure enough, one of the plugs has cracked ceramic, the other one is just worn out. We got new plugs, adjusted the gap (32/100's on a feeler gauge, if memory serves) put everything back, tightened up the motor mounts and fired it up. With all eight firing right, the little bastard really was a Grabber, Ford wasn't fooling with the name on that one. We have several smaller projects that I couldn't get done in the last year for some damn reason. Chance will be a big help
Liz and I are out at a little cafe called Addie's. Not only is it my baby girls nickname, it's a nice little place to eat breakfast…..at least Liz is getting to eat. While we were gathering up our shit to get out the door, I ran way short of breath. Didn't take morphine, I can't drive if I take it, so I had to get a big hit of O2. (sigh) what a pain in the ass that is, and makes me feel far older than I am just to even put the tubes in my nose. No, not all the way, that would be silly. I get home from Addie's I'm gonna have to have some morphine, dammit.
Okay, some time back my little brother mentioned me starting a Novo engine. Dad was taking down an old rod power for a small oil company so they could sell the parts. This old Novo engine was a starting engine for he 40 hp Ajax that drove the rod power. It was unique because dad said, after seeing hundreds of the Novo engines, this was the only one that had a radiator. Yeah, I started it. Even after I was told not too. Mostly because it wouldn't run and acted froze up. The engine wouldn't turn over.
Dad goes to work one Saturday, Mom was doing her thing, and I was up at 0500 and snuck off the to equipment shed. Shed meaning an 60' X 80' steel butler building for storing a ton and a half truck and a really old Gleener combine. I go out to the shed, gather up the tools I needed and was about to drain the radiator when Clay came in. "Dad's gonna be mad". "No he won't dipshit, if you keep your blabber mouth shut", says I. Drained the radiator into a couple of 2 gallon jugs, pull it off, and finally see what I needed to see, the exhaust port on the side. Took off it's little muffler and got to work. I pulled the head and saw right off what the problem was. The exhaust valve was stuck shut, and the intake valve had some kind of crap around it that made it unable to close, and the same gunk had it plugged off. I got the valves out, being damn sure I put all the parts I took off in reverse order on the floor so I could put it back together when I was finished.
Some of you guys are going to laugh, I got the hard crap off the valves with a wire brush and cleaned the rest of the inside of the head, and checked the cylinder top, which was real shiny much to my surprise. Here's where some of you are going to laugh. I had valve grinding compound, applying it liberally to the valve and the valve seat, I spun the piss out of the dart until it quit sticking in a couple of spots and turned freely. Got it all back together, checked the water level, refilled the carb glass with clean gasoline, drained the old fuel tank and cleaned it, refilled it with clean gas. Put all Dad's tools up and got ready to fire the little one lunged devil off. It used a hand crank, so I sat the engine skid on enough cement blocks so I could spin it without breaking an arm.
Just like Dad said, once through, then right up against fire compression, backed the crank back a hair, the pulled it through once hard. Damn thing fired right the hell up. Sunday Dad went out to see what the problem was with the engine. I started it while he was looking for his tools. Best way to avoid the ass eating for not listening is to have what's busted working before Dad got to it. Except that engine. Strangely he was going to use that to tinker with, like a bit of mental therapy after a 90 hour work week. Hmmmmm, the ass eating wasn't that bad
Love ya
Friday, December 27, 2013
Late In The Morning For This
It's a bit late in the morning for when I normally write this up. I've been either feeling rough, or stare at the computer and think "Man, I need to write something. Oh hell, later". Yeah, later is right. I'm one of those guys that "later" becomes "fuck it" if I just don't sit down and do what I know I need to get done. So here I am. While I'm at it, I've got a couple of friends that seem to be having a rough time right now with complications from surgery, a bout with pneumonia, and one that's having pain and trouble breathing. He's in my boat, terminal prognosis, real trouble that's getting worse in his lungs. While you all are at your daily routine, how about throwing those three people in your prayers or good thoughts, please? They are all three good people, won't hurt anyone a bit if you toss in a second or two for each of them.
The spot on the side of my neck that was infected and terribly swollen, split my skin open and has been draining since early Monday morning (0100-0200), is starting to look a little better. It was a bit startling that I got an infection that got so bad so fast. The real swelling began Sunday evening and was up and painful in three hours. To me, that's damn fast. Anyway, it's almost stopped draining entirely, and the swelling is nearly all gone. It's open in a bad place, now that I think about it. Near my left carotid artery. Had I enough sense to worry, I'd be wondering if the surgery there didn't have something to do with that, if I were a conspiracy theorist. I'm not, so having a tumor around that same artery when I went in for surgery the first time is quite the coincidence. At least it's healing up a little, finally.
I have a massage at 1400 hrs today. I'll have to gauze and put tegaderm over the damn spot. That way the therapist is safe from the hole in my neck, and still help me with some incredible stiffness in my back and shoulders. It actually certainly helps me get long better during my time between lymphedema therapies. I've also text my lymphedema therapist about being able to do therapy with the bad spot in my neck. I hope she has a plan for the rest of my back and shoulders. The therapy does me a wonder of good as far as keeping swelling down in my neck, which also helps with pain. I can't say enough about keeping the pain down and how much that helps my attitude all the way around. I'm telling ya, it's not just my ability to keep a positive attitude, it's me and a lot other people to help out that is a lot of my positive attitude. That makes it easier to be myself, and to also much easier to fight with the cancer. That in itself is a tremendous help. I may not win the fight, but here in the middle, it's sure nice to step into a corner filled with so many people. I think that's cool.
This infection that popped up in my neck certainly made me think more about my mortality. Funny that, since I'm running at Terminal Velocity that I'd be suddenly struck with mortality. I mean, shit, I'm already dying, what could an infection possibly do to make me think about my life? I'm not real certain how or why it came around like it did. I know I didn't think I was immortal. Maybe it's not all that deeply hidden, and the infection just brought me that much closer to the end, and a bit faster. I figure at this point, anything like that infection just tosses a little gas on the fire. I am pretty sure, too, that it takes a toll on my body. It's already fighting a battle the poor thing can't win, only to have an intrusive damn thing like an infection thrown in the mix. I was concerned originally after it burst through my skin, that the amount of fluid, both infection and blood, was so high that I had something far more serious. That would have been the shits. I'd already told my oldest son I'd be here for the weekend before New Years. I damn sure didn't want the infection to help cancer make a liar of me. It's certainly not any fun. When it first blew out, I had a jacket on, no shirt. I had lain at just the right angle that it drained down the inside back of the jacket, and on my own back and neck. It didn't hurt, but I felt damp and something smelled just awful. That, I think, was what bugged me worse than anything. That smell of infection and other stuff that was draining had my head running in fifty different directions. I was remembering the smell from last January when my first muscle flap necrosed. I could smell it every time I yawned. Scary shit that. Anyway, I didn't panic, but it certainly made me think a bit about what would have happened if that had burst somewhere else, or if it had weakened my carotid enough to blow it out. I'd have bled out internally very fast. Or had it blown out and gotten into somewhere it could have really done damage, like my inner ear. Or into my sinuses. I can't imagine, now, how badly things could have gone. I feel pretty fortunate that things are actually going my way with this who terminal life stuff. I'm pretty glad it turned out like it has, so far. Easily controlled with antibiotic, and already slowing up on draining. Even that's not a given. I've drained more this morning since my shower than I did over night. That's a little weird.
Man, I couldn't have been more than three or four. I got our garden hose, one of those cheap vinyl jobs, and had climbed out on a tree limb and tied it off. I was making a Tarzan vine to swing on. Around the property the house we lived in sat on was a 2 3/8" tubing, and 3/4" sucker rod fence. It probably wasn't six feet high, but when that's twice as high as you are, that seems WAY tall. The tree I tied the hose to the limb on sat right on the edge of that fence and side walk. There was a branch that was pretty big around that ran out from the trunk over the sidewalk and fence. It was what I planned on using for a launch pad. So, I drag the hose over to the branch, reach way up on the hose, and run out from the trunk down the branch until the hose caught and dragged me through the air. I sailed WAY out over the sidewalk and fence, over the yard and it circled back into the tree where I landed in a "Y" in the trunk. All I had to do to do it again was pass the hose around the outside of one trunk and start over. That worked pretty damn well for the first six or eight attempts. The last one, I can see plain as day in my minds eye. I had those little red Keds like kids used to get. You know, with the little white tips and the crinkly crepe looking soles. A pair of blue shorts, and a white tee shirt that had various kinds of dirt and grass ground into it. So, I head down the branch, the hose gives me that way high pull out over the side walk and fence and back into the yard. I could have sworn I was swinging three or four hundred feet, might have been more like eight or ten. When all of a sudden I was flying straight out, toward the huge funeral tree (cedar, they are always in abundance at cemeteries) and hit the ground flat on my back. Mom saw it, so did a few folks over at Betty's Place. A beer joint that made the best burgers on earth. They all got to me about the same time. I was trying to get up. It was hard to catch a breath 'cause I'd knocked the wind out of myself. I do know that after I got up and around. I had to take a bath, and I couldn't leave the house the rest of the day. Damn. I heard years later one of the old dudes thought I needed mouth to mouth, I did not. Once, when I was about 17 mom was telling that story to some people that the hose untied. I said "No, it broke. The vinyl could'nt stand being twisted and pulled in one place like it did." She started to argue, and to my surprise, because I didn't see my dad until way late that night, he said "Beverly, he's right. Remember? I had to go up and untie the piece of hose." That settled it. I remember as well, that I wasn't allowed to touch any hose we had ever again.
One other time I remember having to spend the day inside, I'd gone out with mom, who was watching my little brother in his stroller. They'd moved the house next to ours out and to another part of town. What that left was a huge foundation and basement made up of limestone blocks that were probably three feet square. I wasn't supposed to be anywhere near it, but I'd wooled my way down into the foundation anyway. I came up with a "kitty frisbee". A cat that had been crushed flat by one of the blocks, then gotten stiff. That way you could carry it by it's tail. I had my Great Granddad Wilson's stetson on, and climbed out to show mom. According to her I said "Look mom!! A flat cat!" I remember getting scrubbed within an inch of my life, my ass eaten out for going into the foundation, and promises of a spanking if I did it again, and promises of a spanking if I picked up anymore dead critters. Sheesh, party poopin parents
Have fun, kids
The spot on the side of my neck that was infected and terribly swollen, split my skin open and has been draining since early Monday morning (0100-0200), is starting to look a little better. It was a bit startling that I got an infection that got so bad so fast. The real swelling began Sunday evening and was up and painful in three hours. To me, that's damn fast. Anyway, it's almost stopped draining entirely, and the swelling is nearly all gone. It's open in a bad place, now that I think about it. Near my left carotid artery. Had I enough sense to worry, I'd be wondering if the surgery there didn't have something to do with that, if I were a conspiracy theorist. I'm not, so having a tumor around that same artery when I went in for surgery the first time is quite the coincidence. At least it's healing up a little, finally.
I have a massage at 1400 hrs today. I'll have to gauze and put tegaderm over the damn spot. That way the therapist is safe from the hole in my neck, and still help me with some incredible stiffness in my back and shoulders. It actually certainly helps me get long better during my time between lymphedema therapies. I've also text my lymphedema therapist about being able to do therapy with the bad spot in my neck. I hope she has a plan for the rest of my back and shoulders. The therapy does me a wonder of good as far as keeping swelling down in my neck, which also helps with pain. I can't say enough about keeping the pain down and how much that helps my attitude all the way around. I'm telling ya, it's not just my ability to keep a positive attitude, it's me and a lot other people to help out that is a lot of my positive attitude. That makes it easier to be myself, and to also much easier to fight with the cancer. That in itself is a tremendous help. I may not win the fight, but here in the middle, it's sure nice to step into a corner filled with so many people. I think that's cool.
This infection that popped up in my neck certainly made me think more about my mortality. Funny that, since I'm running at Terminal Velocity that I'd be suddenly struck with mortality. I mean, shit, I'm already dying, what could an infection possibly do to make me think about my life? I'm not real certain how or why it came around like it did. I know I didn't think I was immortal. Maybe it's not all that deeply hidden, and the infection just brought me that much closer to the end, and a bit faster. I figure at this point, anything like that infection just tosses a little gas on the fire. I am pretty sure, too, that it takes a toll on my body. It's already fighting a battle the poor thing can't win, only to have an intrusive damn thing like an infection thrown in the mix. I was concerned originally after it burst through my skin, that the amount of fluid, both infection and blood, was so high that I had something far more serious. That would have been the shits. I'd already told my oldest son I'd be here for the weekend before New Years. I damn sure didn't want the infection to help cancer make a liar of me. It's certainly not any fun. When it first blew out, I had a jacket on, no shirt. I had lain at just the right angle that it drained down the inside back of the jacket, and on my own back and neck. It didn't hurt, but I felt damp and something smelled just awful. That, I think, was what bugged me worse than anything. That smell of infection and other stuff that was draining had my head running in fifty different directions. I was remembering the smell from last January when my first muscle flap necrosed. I could smell it every time I yawned. Scary shit that. Anyway, I didn't panic, but it certainly made me think a bit about what would have happened if that had burst somewhere else, or if it had weakened my carotid enough to blow it out. I'd have bled out internally very fast. Or had it blown out and gotten into somewhere it could have really done damage, like my inner ear. Or into my sinuses. I can't imagine, now, how badly things could have gone. I feel pretty fortunate that things are actually going my way with this who terminal life stuff. I'm pretty glad it turned out like it has, so far. Easily controlled with antibiotic, and already slowing up on draining. Even that's not a given. I've drained more this morning since my shower than I did over night. That's a little weird.
Man, I couldn't have been more than three or four. I got our garden hose, one of those cheap vinyl jobs, and had climbed out on a tree limb and tied it off. I was making a Tarzan vine to swing on. Around the property the house we lived in sat on was a 2 3/8" tubing, and 3/4" sucker rod fence. It probably wasn't six feet high, but when that's twice as high as you are, that seems WAY tall. The tree I tied the hose to the limb on sat right on the edge of that fence and side walk. There was a branch that was pretty big around that ran out from the trunk over the sidewalk and fence. It was what I planned on using for a launch pad. So, I drag the hose over to the branch, reach way up on the hose, and run out from the trunk down the branch until the hose caught and dragged me through the air. I sailed WAY out over the sidewalk and fence, over the yard and it circled back into the tree where I landed in a "Y" in the trunk. All I had to do to do it again was pass the hose around the outside of one trunk and start over. That worked pretty damn well for the first six or eight attempts. The last one, I can see plain as day in my minds eye. I had those little red Keds like kids used to get. You know, with the little white tips and the crinkly crepe looking soles. A pair of blue shorts, and a white tee shirt that had various kinds of dirt and grass ground into it. So, I head down the branch, the hose gives me that way high pull out over the side walk and fence and back into the yard. I could have sworn I was swinging three or four hundred feet, might have been more like eight or ten. When all of a sudden I was flying straight out, toward the huge funeral tree (cedar, they are always in abundance at cemeteries) and hit the ground flat on my back. Mom saw it, so did a few folks over at Betty's Place. A beer joint that made the best burgers on earth. They all got to me about the same time. I was trying to get up. It was hard to catch a breath 'cause I'd knocked the wind out of myself. I do know that after I got up and around. I had to take a bath, and I couldn't leave the house the rest of the day. Damn. I heard years later one of the old dudes thought I needed mouth to mouth, I did not. Once, when I was about 17 mom was telling that story to some people that the hose untied. I said "No, it broke. The vinyl could'nt stand being twisted and pulled in one place like it did." She started to argue, and to my surprise, because I didn't see my dad until way late that night, he said "Beverly, he's right. Remember? I had to go up and untie the piece of hose." That settled it. I remember as well, that I wasn't allowed to touch any hose we had ever again.
One other time I remember having to spend the day inside, I'd gone out with mom, who was watching my little brother in his stroller. They'd moved the house next to ours out and to another part of town. What that left was a huge foundation and basement made up of limestone blocks that were probably three feet square. I wasn't supposed to be anywhere near it, but I'd wooled my way down into the foundation anyway. I came up with a "kitty frisbee". A cat that had been crushed flat by one of the blocks, then gotten stiff. That way you could carry it by it's tail. I had my Great Granddad Wilson's stetson on, and climbed out to show mom. According to her I said "Look mom!! A flat cat!" I remember getting scrubbed within an inch of my life, my ass eaten out for going into the foundation, and promises of a spanking if I did it again, and promises of a spanking if I picked up anymore dead critters. Sheesh, party poopin parents
Have fun, kids
Wednesday, December 25, 2013
Merry Christmas
To all of you who read this blog on a daily (well as often as I get it done anyway) basis, and to those of you who only read it occasionally, Merry Christmas, and a prosperous and Happy New Year. I, for one, am already having a Merry Christmas. One of my friends text me at just after 0300 this morning to wish my family and me a Merry Christmas. I was awake, I'd had a bit of a time around 0215, and was waiting to make certain it had all calmed down and I'd had a chance to make certain I'd all calmed down before taking the first of the daily drugs and first feed of the day. This time of the morning, when I'm awake, is the time I can see my wife off to work. To have that minute or two we can have as our own for the day. I love the feel of her hair, the way she smells, how she hugs me. We can't talk much, or we'll wake the oldest and my grandson, but we can give a hug and I get a pec on the cheek. My mouth is so messed up it wiped out my chance to give her a kiss. It's one of the plethora of things I've given up over the last year. To not be able to give her a kiss, and to only be able to share a bed with her for more than a couple of months in the past year, those two are the most egregious losses I've suffered.
But, it Christmas, it only comes once a year, except for me. I've always kind of thought every day was a gift, so Christmas is every day for me, on the gift side of the table at least. I said yesterday that I'd had some difficulty with the entire Holiday season. I didn't lie, and I won't go any further on the subject than this: Don't let events dictate how you feel about any particular time, ever. Events happen regardless of the time of year, your time of life, or time of the day for that matter. Good and bad things happen to people on a daily basis. It's no reason to condemn a Holiday, or even the Ides of March, (unless you're Julius Caesar, and you were warned buddy) for what happens to you personally. There, 'nough, said. This time of year should be, even if you're not a believer or are of a different religion, a time to at least look forward with your family. To see the potential that each one of us has, and to nurture that beginning with today. To believers, this is the celebration of the birth of the Savior, Jesus Christ. He lived his life, and sacrificed it to take away sin and be the one way to God. That's a pretty heady task in itself. He lived a very good philosophy, even if you're not a believer, or Christian. Love each other, don't hate, give thanks. Those are good things to achieve, regardless of what a person believes.
This year for me is a bit different than all the Fifty Three I've celebrated before this one. There's a high probability this will be my last. I was hoping for thirty to fifty more to celebrate before I hit that last one, but this is what I got dealt, so I'll play it. Truthfully, I'm more at peace with myself, even though my temper is still pretty close to the surface, and I'm not very patient with some people, overall I'm definitely more relaxed and at peace. I imagine that's pretty common for us terminally ill. We aren't in a bind to find some way to stay alive. Personally I don't want to try anything that's going to make me sick, and in the end only give me a couple more weeks or months at best. I'm more at peace with myself because as I watch my family, I'm not as worried as I was about their being able to take care of themselves after I'm gone. I don't just mean monetarily, I mean as a family unit. I see in them a lot of strength. It's different types of strength in each of them, but together they are going to make a fabulously strong family. I knew they were strong prior to my getting the Terminal Velocity prognosis, but I was worried they might fragment off and not pool all their strengths together. I see that was an underestimation on my part. They are stronger already, and will continue to grow that way. I'm very proud of them all.
I'm more relaxed, probably because I am not worried about what's coming. I know how this ends, and the only thing I have to worry about is doing that part with a little dignity and some grace. I hope I can achieve both of those things. It seems to me we have so few choices that are left to us, without some kind of damn government rule, dictating the direction we should go, that dying is the one thing I hope they leave the hell alone. I've never been much on suicide, since most often it's done it robs the family of reason, and leaves them with questions and guilt. In painful terminal illness like ALS, I'm not so certain that should be a problem, though. I'm more relaxed and at peace because I've got a supportive family. I know it hurts them to see me down and sliding a bit farther down all the time. It would me, I know, and my family is filled with better people than I am. I'm more relaxed and at peace with myself because I've got a ton of supportive friends. They humble me by telling me I inspire them. They strengthen me by being friends, and when I'm gone I won't worry about my family, because they will be there for them as well.
Lets wrap this little Christmas Soiree up so we can enjoy our families and make a memory with them, what do ya say?
The two gifts that I got this year are the same ones I get every year, and I don't thank enough for them
My family: The Best Gift I've ever gotten. From my family in Kansas, to my here in Texas, headed up by the lovely and courageous Liz, to my Aunts and Uncles and Cousins. Thank you for being a big part of my life, as well as letting me share mine with all of you
My Friends: I've got way more than I ever thought I had, and that's a wonderful feeling. I've got a core group of friends I've had for over Thirty years. You guys know who you are, you're more like family, so I probably should have counted you in with my family. I've gained a lot of friends over the years, and gotten reacquainted with others in the last five years. I count myself damn lucky, believe me, to have so many support me in this long run "home". You're a blessing, each and every one of you. and you'll always hold a special place in my heart
That's it. The only two gifts that I think count. At least for me. The other things I've gotten over the years have been wonderful, I've loved them all in their own way. Family and Friends though, those are the two gifts that simply can't be replaced.
Merry Christmas to all of you!!! Thank you so much for your support, it's wonderful
But, it Christmas, it only comes once a year, except for me. I've always kind of thought every day was a gift, so Christmas is every day for me, on the gift side of the table at least. I said yesterday that I'd had some difficulty with the entire Holiday season. I didn't lie, and I won't go any further on the subject than this: Don't let events dictate how you feel about any particular time, ever. Events happen regardless of the time of year, your time of life, or time of the day for that matter. Good and bad things happen to people on a daily basis. It's no reason to condemn a Holiday, or even the Ides of March, (unless you're Julius Caesar, and you were warned buddy) for what happens to you personally. There, 'nough, said. This time of year should be, even if you're not a believer or are of a different religion, a time to at least look forward with your family. To see the potential that each one of us has, and to nurture that beginning with today. To believers, this is the celebration of the birth of the Savior, Jesus Christ. He lived his life, and sacrificed it to take away sin and be the one way to God. That's a pretty heady task in itself. He lived a very good philosophy, even if you're not a believer, or Christian. Love each other, don't hate, give thanks. Those are good things to achieve, regardless of what a person believes.
This year for me is a bit different than all the Fifty Three I've celebrated before this one. There's a high probability this will be my last. I was hoping for thirty to fifty more to celebrate before I hit that last one, but this is what I got dealt, so I'll play it. Truthfully, I'm more at peace with myself, even though my temper is still pretty close to the surface, and I'm not very patient with some people, overall I'm definitely more relaxed and at peace. I imagine that's pretty common for us terminally ill. We aren't in a bind to find some way to stay alive. Personally I don't want to try anything that's going to make me sick, and in the end only give me a couple more weeks or months at best. I'm more at peace with myself because as I watch my family, I'm not as worried as I was about their being able to take care of themselves after I'm gone. I don't just mean monetarily, I mean as a family unit. I see in them a lot of strength. It's different types of strength in each of them, but together they are going to make a fabulously strong family. I knew they were strong prior to my getting the Terminal Velocity prognosis, but I was worried they might fragment off and not pool all their strengths together. I see that was an underestimation on my part. They are stronger already, and will continue to grow that way. I'm very proud of them all.
I'm more relaxed, probably because I am not worried about what's coming. I know how this ends, and the only thing I have to worry about is doing that part with a little dignity and some grace. I hope I can achieve both of those things. It seems to me we have so few choices that are left to us, without some kind of damn government rule, dictating the direction we should go, that dying is the one thing I hope they leave the hell alone. I've never been much on suicide, since most often it's done it robs the family of reason, and leaves them with questions and guilt. In painful terminal illness like ALS, I'm not so certain that should be a problem, though. I'm more relaxed and at peace because I've got a supportive family. I know it hurts them to see me down and sliding a bit farther down all the time. It would me, I know, and my family is filled with better people than I am. I'm more relaxed and at peace with myself because I've got a ton of supportive friends. They humble me by telling me I inspire them. They strengthen me by being friends, and when I'm gone I won't worry about my family, because they will be there for them as well.
Lets wrap this little Christmas Soiree up so we can enjoy our families and make a memory with them, what do ya say?
The two gifts that I got this year are the same ones I get every year, and I don't thank enough for them
My family: The Best Gift I've ever gotten. From my family in Kansas, to my here in Texas, headed up by the lovely and courageous Liz, to my Aunts and Uncles and Cousins. Thank you for being a big part of my life, as well as letting me share mine with all of you
My Friends: I've got way more than I ever thought I had, and that's a wonderful feeling. I've got a core group of friends I've had for over Thirty years. You guys know who you are, you're more like family, so I probably should have counted you in with my family. I've gained a lot of friends over the years, and gotten reacquainted with others in the last five years. I count myself damn lucky, believe me, to have so many support me in this long run "home". You're a blessing, each and every one of you. and you'll always hold a special place in my heart
That's it. The only two gifts that I think count. At least for me. The other things I've gotten over the years have been wonderful, I've loved them all in their own way. Family and Friends though, those are the two gifts that simply can't be replaced.
Merry Christmas to all of you!!! Thank you so much for your support, it's wonderful
Tuesday, December 24, 2013
So, Damn The Bad Luck
I've gotten a few notes asking if everything is okay, since I've not hit the blog or Facebook in a couple of days or more. No, actually, all is not okay. Friday, things were cooking along just like I would have wanted them to do so, simply because it's a Friday, and I felt damn good. Saturday, The Boy and I made Soft Molasses Cookies. I screwed up the first batch, so I let The Boy do most of the work on the second batch and he did a fabulous job. He pays more attention to the directions than I do, and the results proved that out. But, I'm tired all day Saturday. I slept more than I was awake. I just didn't feel right, and come Sunday the explanation would pop up.
I woke up at the normal time on Sunday, couldn't stay awake much more than to put my meds in and feed, and I was back out. I was like that all day. Then around five pm or so, my neck suddenly swelled up so much that I thought the skin was going to rip. We tried several things. Cool compresses, warm compresses, leaving it alone, rubbing it down, nothing seemed to help. About nine pm I had Sarah call hospice and got the on call nurse out. She seemed as confused as we were, and asked if I was comfortable with waiting until Monday to get it really checked out. Well, yes, I suppose I am. Like there was any choice?
Monday, I went to lymphedema therapy. The neck is terribly swollen, hot to the touch, causing me some pain, and messing with my breathing. We don't do much, if it's an infection there's no use in driving it out of my neck to all over my body. So I come home with some of the muscle pain eased off, but the swelling isn't much better. In fact, when the Hospice nurse shows up, the swelling is so bad that my skin is starting to weep a bit. Nasty shit there. I also get an O2 machine and bottle, for those days when I feel like I'm having trouble getting enough air and I'm struggling with keeping my pulse rate down. So now I really do feel like a hamstrung old cancer patients. Somewhere around 11:30 and Midnight Monday, I get this icky feeling and something really foul smelling wakes me up. The spot that the skin on my neck that was weeping, finally did pop, and it's running a gusher of bloody, infection laden, stinking fluid. I don't want to wake anyone up, so I work on taking care of it myself. I did a pretty decent job, too, if I do say so myself. Taking a shower and trying not to get anything in that spot was a real pain, but that's finished and over with. So now it's a matter of keeping a clean something over the spot so it drains into a rag and not all over me. I'm going to have to have some help with this as the day goes on. It's a good thing I've got four or five boxes of gloves for just such an occasion.
Christmas is almost here, and for the first time in a long time I was really looking forward to having a nice Christmas day. We have a six year old boy in the house for goodness sake! It had better be a fun day. Christmas and the rest of the holidays and I have been at odds with each other for quite some time. A lot of the bad crap that's come my way has come during the time between Thanksgiving and the New Year. So when it came down to it, even when things were going just fine, I was a regular Scrooge. I shouldn't have been, the bad stuff was just a turn of the cards. It had nothing at all to do with the season or time of year other than that's just how things shook out. I realize now, that I'd just taken the easy way by being angry with Christmas. Foolish really, but that's how I looked at it.
So, here I am, about to celebrate what more than likely will be my last Christmas, and I'm excited to see the day come. How's that for sudden turn around? Well, it struck me at Thanksgiving, that I had put the bad shit ahead of having a good time and enjoying myself. I will be enjoying myself just because I can and should. I don't have to worry about something bad happening to ruin it, even this stinking, draining, infection in my neck won't keep my from having a good time. Turns out I've known all along what it was supposed to mean to celebrate Christmas. I'm glad to be back to that reason. It only took being terminal to get back to it. Looks like I piddled away a lot of good times. During the first twenty-three years I worked for a big oil company, I spent more holidays at work than I did at home. Not a bad gig, really. Double time and a half pay. Leave real early, Check everything twice, be home before too late in the day. Generally if I got out early enough, noon. If not, then two or three in the afternoon. There were a few times I was on call, I think in reality I only got called out twice on any given holiday, and once was the fault of a guy that just couldn't leave well enough alone, except when he was on call. We had a talk about that. I made him stay and help clean up his mess. I sent him in about 10 PM, I got to leave about 11.
So yeah, this Christmas may be my last, but I intend for it to be one of my best. My oldest son and his family will be here the 27-31. That should make for some nice visiting. It will be good for me to have everyone in one spot, so I can watch how they get along. They are going to need each other, and Liz is really going to need them, in the not too distant future, I fear.
Love all of you. Keep the Faith
I woke up at the normal time on Sunday, couldn't stay awake much more than to put my meds in and feed, and I was back out. I was like that all day. Then around five pm or so, my neck suddenly swelled up so much that I thought the skin was going to rip. We tried several things. Cool compresses, warm compresses, leaving it alone, rubbing it down, nothing seemed to help. About nine pm I had Sarah call hospice and got the on call nurse out. She seemed as confused as we were, and asked if I was comfortable with waiting until Monday to get it really checked out. Well, yes, I suppose I am. Like there was any choice?
Monday, I went to lymphedema therapy. The neck is terribly swollen, hot to the touch, causing me some pain, and messing with my breathing. We don't do much, if it's an infection there's no use in driving it out of my neck to all over my body. So I come home with some of the muscle pain eased off, but the swelling isn't much better. In fact, when the Hospice nurse shows up, the swelling is so bad that my skin is starting to weep a bit. Nasty shit there. I also get an O2 machine and bottle, for those days when I feel like I'm having trouble getting enough air and I'm struggling with keeping my pulse rate down. So now I really do feel like a hamstrung old cancer patients. Somewhere around 11:30 and Midnight Monday, I get this icky feeling and something really foul smelling wakes me up. The spot that the skin on my neck that was weeping, finally did pop, and it's running a gusher of bloody, infection laden, stinking fluid. I don't want to wake anyone up, so I work on taking care of it myself. I did a pretty decent job, too, if I do say so myself. Taking a shower and trying not to get anything in that spot was a real pain, but that's finished and over with. So now it's a matter of keeping a clean something over the spot so it drains into a rag and not all over me. I'm going to have to have some help with this as the day goes on. It's a good thing I've got four or five boxes of gloves for just such an occasion.
Christmas is almost here, and for the first time in a long time I was really looking forward to having a nice Christmas day. We have a six year old boy in the house for goodness sake! It had better be a fun day. Christmas and the rest of the holidays and I have been at odds with each other for quite some time. A lot of the bad crap that's come my way has come during the time between Thanksgiving and the New Year. So when it came down to it, even when things were going just fine, I was a regular Scrooge. I shouldn't have been, the bad stuff was just a turn of the cards. It had nothing at all to do with the season or time of year other than that's just how things shook out. I realize now, that I'd just taken the easy way by being angry with Christmas. Foolish really, but that's how I looked at it.
So, here I am, about to celebrate what more than likely will be my last Christmas, and I'm excited to see the day come. How's that for sudden turn around? Well, it struck me at Thanksgiving, that I had put the bad shit ahead of having a good time and enjoying myself. I will be enjoying myself just because I can and should. I don't have to worry about something bad happening to ruin it, even this stinking, draining, infection in my neck won't keep my from having a good time. Turns out I've known all along what it was supposed to mean to celebrate Christmas. I'm glad to be back to that reason. It only took being terminal to get back to it. Looks like I piddled away a lot of good times. During the first twenty-three years I worked for a big oil company, I spent more holidays at work than I did at home. Not a bad gig, really. Double time and a half pay. Leave real early, Check everything twice, be home before too late in the day. Generally if I got out early enough, noon. If not, then two or three in the afternoon. There were a few times I was on call, I think in reality I only got called out twice on any given holiday, and once was the fault of a guy that just couldn't leave well enough alone, except when he was on call. We had a talk about that. I made him stay and help clean up his mess. I sent him in about 10 PM, I got to leave about 11.
So yeah, this Christmas may be my last, but I intend for it to be one of my best. My oldest son and his family will be here the 27-31. That should make for some nice visiting. It will be good for me to have everyone in one spot, so I can watch how they get along. They are going to need each other, and Liz is really going to need them, in the not too distant future, I fear.
Love all of you. Keep the Faith
Sunday, December 22, 2013
I Skipped A Day, Because I Slept
Yes, it's true, I skipped yesterday because I slept most of the day. I don't know why. I wasn't in any extra pain. I wasn't sick, didn't run a fever. I don't know why I was so sleepy. I did, however, wake up bleeding like a leaking faucet. Not just a little, but fairly copious amounts. Less than a gallon, more that a cup. I know that''s a wide amount, but it's about truthfully what I leaked out of me too. Friday was all about pain control. All day long. I got that under control and then it became bleeding control. I am not sure what I can do about the bleeding to control it. I put in some extra, cold liquid. Twenty ounces of lemonade, twice, that seemed to help. Much better than trying to get a hot cup of coffee in me, and I can set with the lemonade dripping out of a bag. Takes a bit, but it is still twice as fas as the formula I have to use.
Wednesday I woke up at 0200. Wide awake, and from the feel of things. I'd drooled a bucket or two out. Not drool, blood. All down my chin, into the middle of my chest. It was pretty spooky. I was hacking it out of my trach, and suctioning it out of my mouth. Well, lets see, it was dripping off my chin by the time I hit the bathroom to clear it up, and be cleaned up when Liz went to work about 3 AM. It took some doing, but I got all cleaned up and the mistake cleared completely up, before Liz came in and gave me a bye bye kiss. I hurried a lot. It helps to have two trach kits and two collars each. For a while I was taking the trach out while I showered, but it took a hammer and extra time to drive it back in. It seems there are two flaps of skin that are normally tucked in behind the and along side the tube. If I leave it out too long then the two flaps of skins work against the tube and it's a royal pain in the ass getting them back in.
I brought up the bleeding for a couple of reasons, and they are both personal. What if Liz had seen that amount of blood on me? Would she have assumed the worst and had a freak out? I don't know, and it's why I'm glad I woke up ahead of everyone. I shiver with the bought the kids might have found me. I figure they are in enough trauma the way it is, and don't need that to help them out. It's why Hospice is bringing up going to Hospice House. So far, me bleeding isn't so bad that I can't keep the worst of the problem out of the kids faces. I do know, that it if gets to the point I can't, then it's off to the Hospice House.
Like I said, Friday was pain day. I used a lot more of my morphine Friday than I had the first couple of weeks since I got it. It didn't matter what I was doing, I hurt. All the way up to "Fuck this, let me die" bad down to, "I like Mr Morphine". It was up and down like that all day long. Every time I tried to doze off, POW, a nice, double fisted shot of pain. Pain was the only thing that made Liz openly cry when we were discussing things with Hospice. The nurse was talking about farther down the road with me, and how we could control certain things. Liz got all teary eyed and said "I just don't want him to suffer or be in pain". The nurse told her how they assess patients, and that seemed to help quite a bit.
I'm glad it did, I hate to see my sweetheart cry, even more so over me.
I woke up at my usual 0330 on Saturday, got a shower and cleaned up, changed tubes and put on fresh bandages. The skin around my trach is getting weak and thin. It tends to bleed a little, so I'm giving it a break from the bandaids and using some gauze. Perhaps that will let the skin dry out enough I can get a handle on the bleeding part just a touch. I grabbed the paper, fixed my formula in the feed bag, hooked up, and had every intention of making it to Starbucks for coffee and to read the paper. None of that turned out quite like I'd expected it to. I fell asleep, for over an hour. Sure, the feed bag and the lines were empty, good thing. But it was also nearly 0600. I missed the buds by over an hour.
Rats. Okay. I'll wait a while and fix the pancakes with blueberries that Sarah bought on Friday. Cool. Fell asleep with the paper on my chest. Stayed that way until 0730. Good lord, the day is getting away from me. Got up, made the pancakes, as well as an apple flambé to put on top of the pancakes rather than just maple syrup. That was wonderful, I hope. Liz ate some, the Boy ate some. Not sure when the other two ate any, or if they did or not. Two shining reviews was enough for me.
Read a little of the book The Boy bought me. Fell asleep, hard to believe, for two hours. Sheesh. Read some more of the book, watched some football. Fell asleep again. Woke up coughing and bleeding. The new twist that was to stay with me the rest of the day. Sleep, bleed, sleep, bleed. The bleeding wasn't ever for very long, except the last time about 1900. That bled a long time, and seemingly a lot of blood as well. Now, I have to wonder if I'd been bleeding somewhere that was going into my stomach since I'd been so sleepy. It was enough to make me suspicious. Okay, with further thought, I don't think that happened or I'd not been able to stuff formula in there at all. I remembered back to early July when I was just beginning to swallow a little. How very little mucus swallowing made me overly full when I fed. So I ruled that out pretty quickly. Checking both the suction pots, I was even more certain the bleeding was all staying to the outside and not to the swallow or esophagus below the point I can swallow. Liz and I did get some time to be next to each other and talk about stupid shit for a change. I like and miss those days. So much of my time seems to be spent around me that there doesn't seem to be any time for "Us". That's something I'm working on. And working on it hard enough that I will be willing to lay off some of my comfort for just a little more "LiznMe" time.
When they first say a year, maybe less. Or a year for certain with the chemo on clinical trial. Liz and I both decided that it was enough and not to take the extra chemo. Since all it did was bring on a couple of weeks to a month more time, and wasn't a cure, we said "No thanks, no use in me being sick for maybe a couple of weeks extra time." It's damn funny, though, how when something new gets added to the list of things that are going on with my body, how much less time I think I have. Realistically I didn't think I'd make it past February. I'm still thinking that. I had a few bad days in a row, and physiologically I thought that was going to be a big speed up time. No, and being honest, no. It's more the step up in bleeding and the need for so much sleep that makes me think that it's speeding up. Not some time where I had three or four days in a row that were less that stellar. I'm bleeding a bit this morning, and I'm also super tired. I've fallen asleep twice doing the blog so far. (I gotta say, it's damn funny to wake up and see a complete page of zzzzz. Even makes me laugh out loud). So, yes, I do think it's speeding up a bit. From my "Bye Rock" cook out until now, I can see a big difference in my ability to get around. The pain patches, I've got to see about getting those upped one more time. I think 75 is as high as they go. I will find out. Other wise it's gonna be another bottle of stuff I'll take via syringe and feeding tube three or four times a day. I can tell when the patches are getting a little worse. I certainly ache more, and the jaw pain is certainly more pronounced. I changed patches late last night and things are on a pretty even keel so far this morning. I do know that I've had to take the Morphine from .5 to 1.0 per dose to make it work. It's nice to use it sublingually. It goes to work like right now. There's another deal I've got to ask about. If I put the pain patches over a pulse point, will they work better? I've used some supplements that needed to be applied to pulse points. (behind the knees, inside elbows, behind ears). I put the scopolamine patches behind my ears, and I notice a pretty fast call on how they work. They are for motion sickness, I'm using them to help reduce my mucus production.
I'm noticing as well, that when I get tired, I get the shakes. I hate the shakes. The only shakes I liked was from working out and training to complete muscle failure. Where I'd be lifting with dumbbells and would go until I couldn't move them any more. I've had them quit mid lift, which is pretty scary. 110lbs coming back down at you is a bit spooky. But, in all the time I've lifted weights, I've only dinked an eye once. Doing skull crushers, the dumbbell got away from me and dotted my eye. Looked cool, felt foolish. So, back to the shakes. I noticed it last night handing the note pad back and forth with Liz. I could sling it out there, but if she didn't grab it right away, I was shaking. I don't know if it's fatigue, lack of strength, or exactly what. Lack of strength would really chap my ass. the note pad can't weigh eight ounces. Boy, if that is giving me the shakes, I'm glad it's not a beer. Talk about humiliating, if holding a can of Coors out would make me shake like that. Shameful. The shaking, I think is fatigue. I fatigue quickly no matter what I'm doing. I'm almost certain that I'm going to be shaking all over while I make cookies later today. That, too, is part of the reason I believe the end is coming up faster than I'd like it to. In the beginning 6-12 months seemed like a long time. Now it's all too short, that's for sure.
Sometime back in the day, when we lived in Great Bend Ks, with our mobile home backed right up against the flood control berm, and the Arkansas River actually flowed from the border to there, we had a flood. Huge rains west of us around Garden City clear back west to the city where they dammed up the Arkansas in Colorado. No, not clear up into the mountains to it's head waters, but on the front, in the plains. It had come a rain like a cow pissin on a flat rock. Two or so days later the water was catching up with the flow at Great Bend and the flood control berm began to fill. That was pretty slick, it got within 2 or so feet of going over the top. I'd been paying attention to the river for a while, and had noticed that there were places where Cotton Mouth Snakes had gathered up, and learned to stay away from those places. But, I grab the trusty BB gun and head out to look at the berm for a mile or in either direction from the house. I'd gone about 100' and was looking up at the trees. I started noticing a few snakes in the trees, bull snakes, coach whips, those kind of snakes. Until I saw a big knot. Lots of snakes all gathered up in a couple of trees. I'd never seen anything like that before. So I started to go check it out. I ended up running as fast as my little feet would carry me. The knots were all full of Cotton Mouths. Sppppoooooooky shit! I didn't walk the berm again for almost two weeks. That many Cotton Mouth's in one place was a big red flag for me. And, it bothered me enough, I've been a bit more leery of snakes ever since. Yuck!!!
Wednesday I woke up at 0200. Wide awake, and from the feel of things. I'd drooled a bucket or two out. Not drool, blood. All down my chin, into the middle of my chest. It was pretty spooky. I was hacking it out of my trach, and suctioning it out of my mouth. Well, lets see, it was dripping off my chin by the time I hit the bathroom to clear it up, and be cleaned up when Liz went to work about 3 AM. It took some doing, but I got all cleaned up and the mistake cleared completely up, before Liz came in and gave me a bye bye kiss. I hurried a lot. It helps to have two trach kits and two collars each. For a while I was taking the trach out while I showered, but it took a hammer and extra time to drive it back in. It seems there are two flaps of skin that are normally tucked in behind the and along side the tube. If I leave it out too long then the two flaps of skins work against the tube and it's a royal pain in the ass getting them back in.
I brought up the bleeding for a couple of reasons, and they are both personal. What if Liz had seen that amount of blood on me? Would she have assumed the worst and had a freak out? I don't know, and it's why I'm glad I woke up ahead of everyone. I shiver with the bought the kids might have found me. I figure they are in enough trauma the way it is, and don't need that to help them out. It's why Hospice is bringing up going to Hospice House. So far, me bleeding isn't so bad that I can't keep the worst of the problem out of the kids faces. I do know, that it if gets to the point I can't, then it's off to the Hospice House.
Like I said, Friday was pain day. I used a lot more of my morphine Friday than I had the first couple of weeks since I got it. It didn't matter what I was doing, I hurt. All the way up to "Fuck this, let me die" bad down to, "I like Mr Morphine". It was up and down like that all day long. Every time I tried to doze off, POW, a nice, double fisted shot of pain. Pain was the only thing that made Liz openly cry when we were discussing things with Hospice. The nurse was talking about farther down the road with me, and how we could control certain things. Liz got all teary eyed and said "I just don't want him to suffer or be in pain". The nurse told her how they assess patients, and that seemed to help quite a bit.
I'm glad it did, I hate to see my sweetheart cry, even more so over me.
I woke up at my usual 0330 on Saturday, got a shower and cleaned up, changed tubes and put on fresh bandages. The skin around my trach is getting weak and thin. It tends to bleed a little, so I'm giving it a break from the bandaids and using some gauze. Perhaps that will let the skin dry out enough I can get a handle on the bleeding part just a touch. I grabbed the paper, fixed my formula in the feed bag, hooked up, and had every intention of making it to Starbucks for coffee and to read the paper. None of that turned out quite like I'd expected it to. I fell asleep, for over an hour. Sure, the feed bag and the lines were empty, good thing. But it was also nearly 0600. I missed the buds by over an hour.
Rats. Okay. I'll wait a while and fix the pancakes with blueberries that Sarah bought on Friday. Cool. Fell asleep with the paper on my chest. Stayed that way until 0730. Good lord, the day is getting away from me. Got up, made the pancakes, as well as an apple flambé to put on top of the pancakes rather than just maple syrup. That was wonderful, I hope. Liz ate some, the Boy ate some. Not sure when the other two ate any, or if they did or not. Two shining reviews was enough for me.
Read a little of the book The Boy bought me. Fell asleep, hard to believe, for two hours. Sheesh. Read some more of the book, watched some football. Fell asleep again. Woke up coughing and bleeding. The new twist that was to stay with me the rest of the day. Sleep, bleed, sleep, bleed. The bleeding wasn't ever for very long, except the last time about 1900. That bled a long time, and seemingly a lot of blood as well. Now, I have to wonder if I'd been bleeding somewhere that was going into my stomach since I'd been so sleepy. It was enough to make me suspicious. Okay, with further thought, I don't think that happened or I'd not been able to stuff formula in there at all. I remembered back to early July when I was just beginning to swallow a little. How very little mucus swallowing made me overly full when I fed. So I ruled that out pretty quickly. Checking both the suction pots, I was even more certain the bleeding was all staying to the outside and not to the swallow or esophagus below the point I can swallow. Liz and I did get some time to be next to each other and talk about stupid shit for a change. I like and miss those days. So much of my time seems to be spent around me that there doesn't seem to be any time for "Us". That's something I'm working on. And working on it hard enough that I will be willing to lay off some of my comfort for just a little more "LiznMe" time.
When they first say a year, maybe less. Or a year for certain with the chemo on clinical trial. Liz and I both decided that it was enough and not to take the extra chemo. Since all it did was bring on a couple of weeks to a month more time, and wasn't a cure, we said "No thanks, no use in me being sick for maybe a couple of weeks extra time." It's damn funny, though, how when something new gets added to the list of things that are going on with my body, how much less time I think I have. Realistically I didn't think I'd make it past February. I'm still thinking that. I had a few bad days in a row, and physiologically I thought that was going to be a big speed up time. No, and being honest, no. It's more the step up in bleeding and the need for so much sleep that makes me think that it's speeding up. Not some time where I had three or four days in a row that were less that stellar. I'm bleeding a bit this morning, and I'm also super tired. I've fallen asleep twice doing the blog so far. (I gotta say, it's damn funny to wake up and see a complete page of zzzzz. Even makes me laugh out loud). So, yes, I do think it's speeding up a bit. From my "Bye Rock" cook out until now, I can see a big difference in my ability to get around. The pain patches, I've got to see about getting those upped one more time. I think 75 is as high as they go. I will find out. Other wise it's gonna be another bottle of stuff I'll take via syringe and feeding tube three or four times a day. I can tell when the patches are getting a little worse. I certainly ache more, and the jaw pain is certainly more pronounced. I changed patches late last night and things are on a pretty even keel so far this morning. I do know that I've had to take the Morphine from .5 to 1.0 per dose to make it work. It's nice to use it sublingually. It goes to work like right now. There's another deal I've got to ask about. If I put the pain patches over a pulse point, will they work better? I've used some supplements that needed to be applied to pulse points. (behind the knees, inside elbows, behind ears). I put the scopolamine patches behind my ears, and I notice a pretty fast call on how they work. They are for motion sickness, I'm using them to help reduce my mucus production.
I'm noticing as well, that when I get tired, I get the shakes. I hate the shakes. The only shakes I liked was from working out and training to complete muscle failure. Where I'd be lifting with dumbbells and would go until I couldn't move them any more. I've had them quit mid lift, which is pretty scary. 110lbs coming back down at you is a bit spooky. But, in all the time I've lifted weights, I've only dinked an eye once. Doing skull crushers, the dumbbell got away from me and dotted my eye. Looked cool, felt foolish. So, back to the shakes. I noticed it last night handing the note pad back and forth with Liz. I could sling it out there, but if she didn't grab it right away, I was shaking. I don't know if it's fatigue, lack of strength, or exactly what. Lack of strength would really chap my ass. the note pad can't weigh eight ounces. Boy, if that is giving me the shakes, I'm glad it's not a beer. Talk about humiliating, if holding a can of Coors out would make me shake like that. Shameful. The shaking, I think is fatigue. I fatigue quickly no matter what I'm doing. I'm almost certain that I'm going to be shaking all over while I make cookies later today. That, too, is part of the reason I believe the end is coming up faster than I'd like it to. In the beginning 6-12 months seemed like a long time. Now it's all too short, that's for sure.
Sometime back in the day, when we lived in Great Bend Ks, with our mobile home backed right up against the flood control berm, and the Arkansas River actually flowed from the border to there, we had a flood. Huge rains west of us around Garden City clear back west to the city where they dammed up the Arkansas in Colorado. No, not clear up into the mountains to it's head waters, but on the front, in the plains. It had come a rain like a cow pissin on a flat rock. Two or so days later the water was catching up with the flow at Great Bend and the flood control berm began to fill. That was pretty slick, it got within 2 or so feet of going over the top. I'd been paying attention to the river for a while, and had noticed that there were places where Cotton Mouth Snakes had gathered up, and learned to stay away from those places. But, I grab the trusty BB gun and head out to look at the berm for a mile or in either direction from the house. I'd gone about 100' and was looking up at the trees. I started noticing a few snakes in the trees, bull snakes, coach whips, those kind of snakes. Until I saw a big knot. Lots of snakes all gathered up in a couple of trees. I'd never seen anything like that before. So I started to go check it out. I ended up running as fast as my little feet would carry me. The knots were all full of Cotton Mouths. Sppppoooooooky shit! I didn't walk the berm again for almost two weeks. That many Cotton Mouth's in one place was a big red flag for me. And, it bothered me enough, I've been a bit more leery of snakes ever since. Yuck!!!
Friday, December 20, 2013
It Happens Fast, Don't It?
A few weeks or even months ago, changes in my body, how it worked, what it was doing, how the cancer was affecting things, that happened slowly enough I had to really focus on one particular area to notice what had changed. That's not the case now. Things change REALLY fast! Such as going from being just fine one minute, to coughing up copius amounts of blood from my trach and mouth the next. As in that's what happened this morning. I felt a cough building up. So I gathered my goodies, threw away all my trash, waved bye bye, and the second my ass hit the car seat I was hacking up beautiful bright red blood. Suctioned some out of my mouth before it was running down my chin and onto my chest. I'm no martial artist, I'm not trained in grappling or hand to hand combat, but I can handle myself pretty well in a fight if I have the need. Okay, lets make that used to have that ability. A few years back, a nice young man asked if I'd show him how to defend himself. After some discussion about how I'm not a trained person, and that I just do what feels natural, I reluctantly agreed. After about 20 minutes, and some mistakenly too strong knees to his thigh and hip, I said we needed a break before one of us gets mad. One of us was already mad, and I didn't notice. I turned my face away from his and got cheap shot. Not bad either, since it broke my nose…again. Well, I don't think he was expecting it, but I grabbed his throat, turned him around and was just starting to put him to done with a little nap time. When I got him all situated where I wanted him (leaning back to take his ability to really move) I whispered, "Shit happens fast, don't it?" Then he had a little nap time. Not long, since I only held on long enough for him to go out, but long enough to make an impact on what I told him. I'm glad I matured just a little, 25 years before that he might have woken up with a couple of broken fingers on each hand as a reminder not to mess with people you don't know.
It turns out, that's exactly how the cancer growth is affecting me now. It's damn fast, sometimes I have enough time to sort out how to adapt, most of the time I'm playing catch up with the changes. The bleeding issue is the most bothersome. I've said there are things I don't mention on the blog, or some that I don't talk about as they happen. The new and more pronounced bleeding is one of the latter. It caught me unaware Monday at my therapy session. I knew what it was when it hit, by the taste in my mouth, but I was shocked that I didn't have the prelude that normally goes with the hit. Then, Wednesday, it got me very early in the morning. Liz has changed work hours so she goes in at close to 0300. Something woke me up at 0150, I felt wet on my chest, and that's not in the normal. Since I don't lie flat, things I drool run down my chin, neck, then chest. I look down, and low and behold I've got a river of blood running my chin to the middle of my chest. No wonder I felt wet!!! Okay, so suction a poke of blood out of my mouth, fold the shirt so it sucks up and catches the river before it hits the chair, grab the portable suction and head to the bathroom. I'm telling ya, it was a damn mess, and a near fist fight getting that straightened out. Shit happened fast, baby, way fast. I'd been tasked with talking to the family about whether or not to stay home or go to Hospice House when the bleeding got so overwhelming that I can't deal with it alone. Wednesday settled that for me. Can you imagine how horrifying it would be to one of my children to find dad soaking in his own blood and having already died? No, no damn way they are going to have to see that.
Some of the other less nasty aspects of that is the sudden need for oodles more sleep during the day. That's not so bad, actually, since I'm also sleeping better at night as well. This too is something the Doc and I discussed in rapid fashion my last trip to MD Anderson. I wish I'd pressed him more for a generalization of a timeline for the various stages, but I'm going out on a limb and say the bleeding and the extra sleep need is probably in the hallway with Critical Mass up ahead. Still a distance out, but not nearly as far as a month ago. Since this is my first attempt at a terminal disease and prognosis, I'm kind of flying by ear. My warped sense of humor just hit with that "first attempt" remark. Run with it, he said, it'll be funny he said. So I will. First attempt at a terminal disease and prognosis, I wonder if I skip a step, does that mean I go back and have to start all over? I mean, damn, it would be easier to do if I had that extra knowledge about what to expect. It would make the transition time smoother for certain. It's also a damn shame that isn't how it works. One thing I have discovered is that when I'm bleeding particularly hard out of my mouth, that the tumors that are irritated are far back in my throat, and they plug off my intake of air through my nose. Yes, I'm using the trach and some of my nose to inhale air when I breath. If I leave the inner canula in my trach tube, I can't bring enough air in fast enough, and my blood ox starts getting lower and lower. As in 88 one time at therapy. I pulled the inner canula out and that jumped to 93 in a matter of two minutes, possibly less. I also have coughed up a couple of clots when the inner piece was out and those clots plugged the tube. Let's put that one down as "fucking near all out panic" when you can't draw a breath from any of my normal spots. Close enough to panic that I struggled getting the collar undone so I could pull the trach tube and get breathing again.
Remember my old saying "Panic Kills", it damn sure would have if I'd not kept it somewhat together.
I've found a couple of new places that are exceptionally hard but not tender to the touch, which leads me to believe they are cancer tumors. I do know that some of them are in areas where I have had surgery. Some of the tightness is certainly from that and left over damage from the radiation I'd gotten almost 5 years ago. In fact, I started radiation therapy five years ago next week. I did two treatments in one day, twice. Once for Christmas, once again for New Year's Eve. If possible, do not attempt to talk your radiation Oncologist into letting you do anything quite so foolhardy as that. Those to therapy days were like being hit by a bus, and a week later, being found still being dragged by the bus. No, that was foolish. So much for being Muy Macho! The new areas already had some degree of "hardness" for lack of a better word. but the surface area didn't change and increase as it's doing now. The jaw also is getting more of a constant thumping, like a tooth ache, only not quite that bad yet. Okay, sometimes it is that bad. The morphine slows that down, but I like to use it sparingly, not because I'd get addicted, but because to me it's an emergency medicine. For when the pain is so bad I have trouble using the little syringe they sent with it. Probably a little too late by then, but since it's used sublingually the lag time for relief is close to nil. With the lortab having to go through the PEG tube, the lag time to relief is close to twenty minutes. I prefer the morphine.
One bright summers day I was having lunch at Ken's Pizza in Liberal Ks, then heading to the house to fiddle around before resting up prior to the coming nights fun and games. I don't recall why we were home from the rig on a Friday. It will come to me soon enough. Anyway, I take a right and head up Kansas Avenue toward downtown when a Volkswagen Bug comes out of the Firestone Tire shop and promptly looses her left rear tire and rim. It goes merrily on it's way across Kansas and stops at the west curb. I don't recall what was on that corner, there's a convenience store there now. I stop close in behind the lady and hit the flashers. I parked at an angle behind her since loosing the wheel put her a little into both lanes. A couple of other fellas stopped off the road and were standing with me. I wish I could remember who the two dudes that stopped with me were! Damn, old man memory anyway. Man, I can see in my minds eye everything so clearly except the guys who helped out faces. Weird, huh? The bug was a standard cream color with grey interior, but not a super beetle. The Bug had Finney County tags. The lady, an attractive strawberry blonde, was very nervous and shaken up, so I asked why she'd stopped in Liberal. She said she was just going out for a drive, since it was so pretty, and ended up in Liberal where she blew a tire close to the Firestone store. Her other 3 tires where in really bad shape so she bought four new times. (I still can't remember who was there! It's gonna run me bat shit!) So, one of the guys has run down the street and picked up the tire that ran away, we've found all the lug bolts (bolts on a Bug, not nuts) and the guys were wondering what to do. The lady had no jack. I grabbed the bumper with my back to the car, and stood up. I needed help holding it, so one of the other guys grabbed on and we were able to get it high enough the third guy got the tire on and used the ladies' own wrench to tighten the bolts. We were walking back to our cars talking and laughing and deciding we all earned a beer, which we had. I got in my car, and parked on the east side of the street, the other two guys were parked just ahead of me. We looked in the Firestone shops door, there were 3 tire men standing there, and they turned the sign around from "Closed" to "Open". I think the general consensus between the three of us was that those guys were complete pricks, which we yelled at them in a most vociferous manner. We never did get that beer, not was I sharp enough at the time to get the nice woman, who I believe to be just a bit older than myself, phone number. To live and learn
Have fun today, kids. Remember, a gentle pat on the back is more effective than a kind word.
It turns out, that's exactly how the cancer growth is affecting me now. It's damn fast, sometimes I have enough time to sort out how to adapt, most of the time I'm playing catch up with the changes. The bleeding issue is the most bothersome. I've said there are things I don't mention on the blog, or some that I don't talk about as they happen. The new and more pronounced bleeding is one of the latter. It caught me unaware Monday at my therapy session. I knew what it was when it hit, by the taste in my mouth, but I was shocked that I didn't have the prelude that normally goes with the hit. Then, Wednesday, it got me very early in the morning. Liz has changed work hours so she goes in at close to 0300. Something woke me up at 0150, I felt wet on my chest, and that's not in the normal. Since I don't lie flat, things I drool run down my chin, neck, then chest. I look down, and low and behold I've got a river of blood running my chin to the middle of my chest. No wonder I felt wet!!! Okay, so suction a poke of blood out of my mouth, fold the shirt so it sucks up and catches the river before it hits the chair, grab the portable suction and head to the bathroom. I'm telling ya, it was a damn mess, and a near fist fight getting that straightened out. Shit happened fast, baby, way fast. I'd been tasked with talking to the family about whether or not to stay home or go to Hospice House when the bleeding got so overwhelming that I can't deal with it alone. Wednesday settled that for me. Can you imagine how horrifying it would be to one of my children to find dad soaking in his own blood and having already died? No, no damn way they are going to have to see that.
Some of the other less nasty aspects of that is the sudden need for oodles more sleep during the day. That's not so bad, actually, since I'm also sleeping better at night as well. This too is something the Doc and I discussed in rapid fashion my last trip to MD Anderson. I wish I'd pressed him more for a generalization of a timeline for the various stages, but I'm going out on a limb and say the bleeding and the extra sleep need is probably in the hallway with Critical Mass up ahead. Still a distance out, but not nearly as far as a month ago. Since this is my first attempt at a terminal disease and prognosis, I'm kind of flying by ear. My warped sense of humor just hit with that "first attempt" remark. Run with it, he said, it'll be funny he said. So I will. First attempt at a terminal disease and prognosis, I wonder if I skip a step, does that mean I go back and have to start all over? I mean, damn, it would be easier to do if I had that extra knowledge about what to expect. It would make the transition time smoother for certain. It's also a damn shame that isn't how it works. One thing I have discovered is that when I'm bleeding particularly hard out of my mouth, that the tumors that are irritated are far back in my throat, and they plug off my intake of air through my nose. Yes, I'm using the trach and some of my nose to inhale air when I breath. If I leave the inner canula in my trach tube, I can't bring enough air in fast enough, and my blood ox starts getting lower and lower. As in 88 one time at therapy. I pulled the inner canula out and that jumped to 93 in a matter of two minutes, possibly less. I also have coughed up a couple of clots when the inner piece was out and those clots plugged the tube. Let's put that one down as "fucking near all out panic" when you can't draw a breath from any of my normal spots. Close enough to panic that I struggled getting the collar undone so I could pull the trach tube and get breathing again.
Remember my old saying "Panic Kills", it damn sure would have if I'd not kept it somewhat together.
I've found a couple of new places that are exceptionally hard but not tender to the touch, which leads me to believe they are cancer tumors. I do know that some of them are in areas where I have had surgery. Some of the tightness is certainly from that and left over damage from the radiation I'd gotten almost 5 years ago. In fact, I started radiation therapy five years ago next week. I did two treatments in one day, twice. Once for Christmas, once again for New Year's Eve. If possible, do not attempt to talk your radiation Oncologist into letting you do anything quite so foolhardy as that. Those to therapy days were like being hit by a bus, and a week later, being found still being dragged by the bus. No, that was foolish. So much for being Muy Macho! The new areas already had some degree of "hardness" for lack of a better word. but the surface area didn't change and increase as it's doing now. The jaw also is getting more of a constant thumping, like a tooth ache, only not quite that bad yet. Okay, sometimes it is that bad. The morphine slows that down, but I like to use it sparingly, not because I'd get addicted, but because to me it's an emergency medicine. For when the pain is so bad I have trouble using the little syringe they sent with it. Probably a little too late by then, but since it's used sublingually the lag time for relief is close to nil. With the lortab having to go through the PEG tube, the lag time to relief is close to twenty minutes. I prefer the morphine.
One bright summers day I was having lunch at Ken's Pizza in Liberal Ks, then heading to the house to fiddle around before resting up prior to the coming nights fun and games. I don't recall why we were home from the rig on a Friday. It will come to me soon enough. Anyway, I take a right and head up Kansas Avenue toward downtown when a Volkswagen Bug comes out of the Firestone Tire shop and promptly looses her left rear tire and rim. It goes merrily on it's way across Kansas and stops at the west curb. I don't recall what was on that corner, there's a convenience store there now. I stop close in behind the lady and hit the flashers. I parked at an angle behind her since loosing the wheel put her a little into both lanes. A couple of other fellas stopped off the road and were standing with me. I wish I could remember who the two dudes that stopped with me were! Damn, old man memory anyway. Man, I can see in my minds eye everything so clearly except the guys who helped out faces. Weird, huh? The bug was a standard cream color with grey interior, but not a super beetle. The Bug had Finney County tags. The lady, an attractive strawberry blonde, was very nervous and shaken up, so I asked why she'd stopped in Liberal. She said she was just going out for a drive, since it was so pretty, and ended up in Liberal where she blew a tire close to the Firestone store. Her other 3 tires where in really bad shape so she bought four new times. (I still can't remember who was there! It's gonna run me bat shit!) So, one of the guys has run down the street and picked up the tire that ran away, we've found all the lug bolts (bolts on a Bug, not nuts) and the guys were wondering what to do. The lady had no jack. I grabbed the bumper with my back to the car, and stood up. I needed help holding it, so one of the other guys grabbed on and we were able to get it high enough the third guy got the tire on and used the ladies' own wrench to tighten the bolts. We were walking back to our cars talking and laughing and deciding we all earned a beer, which we had. I got in my car, and parked on the east side of the street, the other two guys were parked just ahead of me. We looked in the Firestone shops door, there were 3 tire men standing there, and they turned the sign around from "Closed" to "Open". I think the general consensus between the three of us was that those guys were complete pricks, which we yelled at them in a most vociferous manner. We never did get that beer, not was I sharp enough at the time to get the nice woman, who I believe to be just a bit older than myself, phone number. To live and learn
Have fun today, kids. Remember, a gentle pat on the back is more effective than a kind word.
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