Yeah, do not nod off. I started the blog 3 times during the day yesterday. After the third time of having at least two pages of nothing but commas I hung it up. I'd nod off, finger still pressing the last thing I typed and it would just run away with itself until I woke up. So, I gave in to the idea of trying to write while getting the sleep during the day that I didn't get at night. I got antsy Thursday night, when I was supposed to be sleeping. I'd had a couple of coughing fits that came very close to coughing and vomit fits. Not wanting to be caught unaware and being woken within nano seconds of barfing, I chose stay awake. Wise choice, since I did pitch a couple of gigunda coughing spells, and nearly barfed during them both, I counted staying awake a win. And actually, staying awake was a double win, I got to give Liz a hug after she helped me out a little. I love getting and giving a big ole hug to Liz. Even before I got cancer again, it made my day to get a hug from my Sweetheart. With any luck, at the end of the day, we could play Snuggle Bunnies. Yep, I miss that a lot. Over twenty years of going to sleep with the same person, and have them next to you when you wake up, is probably the best feeling I've ever had. On that front, yes, Cancer sucks dick for skittles.
Weird shit is going on. I mean, more weird than the hole in my neck being so infected and draining that infection for almost four straight days. I'm typing away, and I know that with all the swelling and stuff that my neck has been pulled forward, and that makes a lot of different muscles and tendons tighten up. It's a cascading series of bio mechanical failures that add up to extra pain I don't need and probably part and parcel of some of the time I spend fighting to draw enough air to work and walk around with. So I'm working now on trying to get that shoulder and shoulder blade back into neutral where they belong. It's time consuming and somewhat painful, but in the long run it's worth it for the added movement in my neck and head. I was diddling around on the FaceBook the other day, typing in what I hoped would be a witty response to a question (hoping because I was ass deep into a cruise on the SS Morphine), when I feel and "hear" a pop. "Hear" is in quotation marks because our bodies are made up with a lot of water and other liquid in it. A person can "hear" the pop or snap because the liquid is a great conductor of sound, and while no one else heard it, you certainly can. The pop came from a spot close to where they dragged my pec up and shoved it in my mouth. They have to leave it attached to my chest for the blood veins and artery to keep it alive.
So, POP goes the pectoral, and I hop up, yank my shirt off, and start checking for very read spots or worse bruised looking areas. I've torn enough muscle to start looking for a bruise. Just because it's internal doesn't mean that sudden release of blood from a tear won't bruise. In fact they make some lovely purple and blue bruises. No bruising, but Lord that damn spot is tender to the touch. Forty Eight hours until Lymphedema Therapy where I can get the spot looked at from a professional Physical Therapist. Still, no bruising but I'm losing a bit of head and neck movement, and the area is getting more tender than it was the first day out. So, finally at Therapy and my therapist is going over the area and can't find any tears or pulls, or so it seems. What she has found are a couple of places where the muscle is anchored in a couple of spots. It's those two areas that are the most tender. So now I'm looking at the kinesiologist chart and seeing what might have caused this damned ouchie I've got.
Mechanically, I get the idea from just looking at the chart. Therapist confirms my suspicion. Since the surgery my neck and head have pulled almost straight forward and down. That stresses everything along the line. It did pop. but not as in a tear or super pull, it was simply resetting the out of kilter tendons and all. It helped my posture some, and I'm working on fixing it on my end, so I don't have to hear that POP and pee pee my pants just a little because the pain is such a bear.
The other weird thing is using the O2 more than I expected. Okay, okay, I didn't use it first because I thought I didn't need it. Then I go out fiddling around with Liz and end up sounding like a freight train with a bad valve on the steam piston. Lots of chugging but no real Chugging. So yeah, I had to piss the vanity and do what is right. Suddenly, and amazingly, I could breath easier. Along with that went walking better, and having a lot longer fuse. I'd say that was a secret that I had a short fuse, but of course that would be a lie. When I'd get winded, it pissed me off to no end that I couldn't keep up. I know, I know, it's okay to need help. Of course it is, for the rest of the world population, but not myself. I am supposed to be above needing all this silly extra equipment. Which of course makes me a hypocrite. Yes, yes it does, and here is why in one statement: Try taking my Fentanyl patch and Morphine away, shocking things may happen. One scenario is me catching someone taking my patches and Morphine and shoving their OWN boot so far up their ass they have to yawn to tie a knot. Pointing out how the drugs are accepting outside help, and yet seeing the O2 bottle as something to loathe. Hypocrite. I love my wife and kids to death. Enough so that I'd step in and take a bullet. But it bothers me on a personal level to ask them for help, and in all honesty it shouldn't. I'm working on that, in fact I've had the oldest daughter help me with bandages and the like for the big assed hole in my neck that was draining. Oh! The big assed hole had stopped draining late this evening, and now has a bandaid on it instead of the giant 4X4 square of gauze to contain the drainage. Little less freak looking now.
That, kids, is how things have gone the last 3-5 days. But much less than it could be, since I'm seeing lots of moving activity around the neighborhood. That serves as a reminder that if I don't fly right, I could end up at Hope House, patiently awaiting the bottles to talk to her. At any rate, it's time to let doc have some of the decisions like painting the outside, weight training (which I gave up because my Pectoral isn't on my chest anymore. It's inside my mouth. As an added bonus that should crack you up, one of my skin grafs has hair growing on it. Some times any amount sounds gaggy, I know, but this is there to prove it's still alive and not dead and trying to give me a wonderful bacterial infection. Thank you Pectoral muscle for giving us something to do. Namely finding something else to profoundly confuse and not always amuse me. At any rate, this is the end of today's blog. I'm feeling petty chipper this morning, even though I dozed off and I'm missing coffee with the boys.
Now, go forth and multiply! No, too Old Testament. Do to Wango Tango. No, no, too Gonzo. Go forth and make certain the life you're living is full of new and exciting things (ps: every life is full of new and exciting things. you just gotta figure out which ones are most important and the most fun)
Today's blog is brought to you by the letter 16, and a number 2
HAHAHAHAHA The Blog was a failure. I dozed off typing it!!! HAHAHAHA
Saturday, January 4, 2014
Thursday, January 2, 2014
Into The New Year
Well, I had to take a break and go to get lymphedema therapy, and when I got back home I reread what I'd written, hated damn near every word and shit canned the whole deal. This is my "Do Over". Why a "do over"? Simply put, because I fucking can, so there. That's in part, true, and in part not so true. Yeah, it's my blog, so I can set the rules, but it's also in how I had shit so jumbled up even I couldn't decipher what in God's name I'd written. I have got to stop trying to write or do much of anything if I've had a hit on the old sublingual Morphine bottle. If I don't, then what is often my thought is entirely different and indecipherable when it hits the page. Not so odd given it's nature to begin with.
It's been a weird Christmas/ New Years season for me this year. I was really looking forward to Christmas and New Years, then to get hit with a wicked assed infection in a spot where I'm fairly positive the Infectious Disease PA at MD Anderson thought they saw a spot, only to have it not be there eight days later on sonogram or CT Scan either one. Well, we all thought it was just a little water taking up space where they cut a tumor off my carotid artery. When I get a chance, I'll ask someone to see if an infection can lie dormant and kick off again if something triggers it. Wouldn't that be some shit now, huh? So we got that healed up, but man, it stole a lot of my energy and drive for the next 7-10 days. To be on the safe side I'm taking another seven days of antibiotic. That being said and done, I had a blast watching the kids (six year old Bo, along with the 27 yr old, and the 19 and 15 yr old babies of mine) open gifts. It really was one of the most fun Christmas's I'd had in a long time. It made what may be my last Christmas a true pleasure and joy. Having the Oldest Son and his family come visit for 4 days was really nice as well. I'm glad he's found someone that he's comfortable around (which means he's comfortable with himself, first. no easy feat there), and who also loves his company as well. And whose son has taken to my son like a daddy and friend both. That's damn nice for both of them.
I had, at one time this morning thought about putting in some of the stories of my Great Granny Wilson and other family members just for something fun to do. I'm still kicking that around, so don't jump ship on me yet. But, there's the physical and mental stuff to go over and get out of the way first and foremost. Without further ado, here we go: The infection that came on so fast and had my neck so swollen may have been a hide out kinda of thing. Only kicking in when everything was just right. Star Trek stuff that. I wish now that I'd taken a sample of the damn stuff so Hospice could have gotten a decent look at it from a lab point of view. My hindsight has always been way better than my on site decision making. But I think that's the norm, isn't it. I've had some honest to goodness pain in the right side of my lower jaw, which makes since because it's the only part of my jaw that's left. I'm hoping it's a muscle thing and not a cancer thing. Man, that would be super painful if the cancer would jump off into my bones, and since it had on the left side of my jaw, I don't see why the right side should get off any easier. Along with that has been a marked loss of my ability to get a good long, deep breath. It seems I was panting more and my heart was just hurtling along trying to get the oxygen to the places that need it. As much as I hate to admit it, the oxygen machine does me a lot of good. My pulse rate is down and my oxygen level is holding pretty steady now. The old cancer is just hop, skip, and jumping along on its own timeline and agenda. That tells me that it's moving along fast enough to make me wonder how much time I really have left. I can't let that bother me though. Okay, that's a pretty good summary of what's going on. Except that the hole in the left side of my neck where that infection burst through is still weeping off and on. Mostly off and on with mostly off the last couple of days.
So, when I was a kid around Thanksgiving and Christmas, depending on where we had the meals and other stuff, I got to see my only surviving Great Grandmother. In fact, Nora Wilson was my only surviving great grand parent, bar none. I don't remember meeting George Wilson, which would be my Great Grandfather. George and Nora Wilson would be my dad's maternal grand parents. I never met Great Grandfather Smith, dad's paternal grand parent. Nor did I get to meet the Rockwell or Green great grandparent's, they were my mom's grandparents. Kind of a drag, because at the time, I didn't even think about recording some of Granny Wilson's stories she told. And that puts me at a terrible loss, I believe. To put it in perspective. We go up and spend weeks or longer orbiting earth. I've seen the guys walk on the moon. Granny Wilson came to Kansas from Missouri shortly after her birth. Her family, the Lewis's were some of the first to leave Boonesborough and go to the frontier in Missouri. Yes, that Daniel Boone. Anyway, they moved into Kansas in a covered wagon. When she'd grown up enough, George Wilson and half of my family was on it's way to being. So, in her lifetime, Granny Wilson got to see aircraft that barely cleared the ground up to Jumbo Jet that can cross the ocean and safely land in less than 12 hours. She saw it go from a travel across the state go from a couple of days to just a few hours. She's seen the world go from full of exotic places to a world that can be reached in several ours and far more safely. In some cases the changes are so dramatic that they might be hard to believe. In her lifetime Granny Wilson saw things change faster than anything happening right now. It's amazing and a bit frightening how the country and world has moved ahead in the last 100 plus years, except we can't seem to get passed the point of trying to kill ourselves off with new and more lethal weapons. Strange isn't it?
Granny Wilson had a brother visiting her, or so goes the story, who brought his two greyhound dogs with him. Granny had caught the dogs coming out of the cool cellar where she kept the eggs so they'd not spoil and so you could eat eggs for breakfast in the morning. I'm not certain which kid was in charge of egg gathering. Depending on the year, it may even have been my Grandmother Mildred. That's kinda cool. Anyway, G Grandpa Wilson was off working someplace and that may have been the norm about that time in history. So, Granny catches the egg suckin dogs coming out of her cool cellar. She snags the 45/70 Springfield, and a couple of shells. She drops both dogs before they know whether what's hit them. It turns out that they are too big for her to carry the rest of the way out of the cellar. There they lay until GPa Wilson and her brother got home. There were some words spoken, according to my dad, but the brother got the dogs the rest of the way out of the cellar and left the next morning himself. Granny Wilson may have weighed a hundred pounds soaking wet. She delivered thirteen children over her life. She lost twins that died of smoke inhalation from a fire at the house. So eleven kids lived. She sent her sons off to WWII and all of them came home. My Grandmother Smith had her two oldest sons in WWII as well, and they both came home. A Marine who did a tour on Saipan as a BAR gunner. Her oldest did his time with the 555th Wolf Pack Anti-Aircraft battalion, across Europe, and saw the horrors of concentration camps.
They way my dad and his brothers and sister (Grandma and Grandpa Smith lost a daughter, but I can't remember from what) were raised would absolutely give the Politically Correct sissies coronary's, but they also learned to be self sufficient. My dads brothers tied him up to a tree once when he was little so he wouldn't tag along with them and their Uncles. I believe Uncle Tubs and Tom were about the older brothers ages. Dad went home, got a 22 rifle and kept them pinned for a while, even when he knew his ass was grass later. Dad also said at one time when he was six or seven, that his oldest brother Bill had done something to piss him off, and I can't remember what it was now. So dad goes to see his mom, my Grandmother Smith, who wouldn't have said a cuss word if her life depended upon it, and asked her "What does (insert slang for sexual congress here) mean?" According to dad, Gma about had a stroke, and asked where he'd heard that word. Dad said "Well, that's what Bill says he's been doing to Billy Clapper" who was a neighbor girl about Bill's age. Yes, Dad fixed Bill's little red wagon that day, but I'm almost positive that Bill got even some how somewhere. Imagine that happening now. CPS would have had all the kids picked up and shipped off to foster homes while the Grand Parents were placed under arrest and would have to fight for custody of their kids. What a crap hole we've slipped into.
I'm going to end this with a disclaimer. The Egg Sucking Dog Caper I got first hand from Granny Wilson a couple of times in 1972 and 1973. In 1975 I got moved up to the "adult" table. It paid to work on a rig when you're only 14, then turn 15 right before Thanksgiving. The "What Does (blank) Mean Paradigm" I heard from Dad a couple of times growing up. Surviving family, if this is wrong anywhere let me know. As much as I hate to admit it, this blog has taken me all day to get down because my chemo brain rerouted so much shit it was hard to dig up the times and places. There are a couple of stories that I will try and relate involving my dad, his best friend in high school and a couple of bonehead brothers that were too stupid to be drafted, but still in high school and picking on a guy, that if my memory is correct, was a little light in his loafers. We'll see how that goes.
Shortly after gaining access to the Big Table at family Holiday Functions, my Grandad Smith had a huge black walnut tree he cut down kick back and break his knee. The Fam goes up to visit and help with some things the Grandparents needed done before it got blisteringly cold. Dad and I had gone squirrel hunting about 200 yards north of the homestead in a set of woods that bordered the north side of Reece Kansas. We walked from Grandad's house into the woods, then East to darn near Harley Bolton's Machine Shop. Harley built his own steam engines to scale using his machine shop. It was neat as hell to go watch one run, and only now when I'm in my 50's do I realize what a great mechanical mind Harley possessed. Building a scaled down version of a steam tractor that actually ran and drove is no small effort. Boy, the shit your miss when you're a kid. Anyway, Dad and I bagged around 5 or so squirrels for breakfast, which of course meant that I got to clean them since I was the youngest hunting. Strange now that shit always went that way. Glance HERE, if you are squeamish move on to the next paragraph NOW. Gandma fried the squirrels, heads and all, and being more than a little perplexed I asked my dad why. "Because we are having fried squirrel, eggs, and biscuits with squirrel gravy. You use the heavy end of your table knife, and crack open the heads and put the brains on your eggs". Bullshit. Bullshit Bullshit Bullshit. I thought that, I wasn't stupid enough to say it out loud. Sure enough, when the squirrels were finished, and the scrambled eggs safely secured upon the plates, dad and Grandpa used the heavy handle on the table knife, cracked the skulls open, and put the brains on their eggs. Not to be left out, and wanting to look like I knew a thing or two myself, I followed suit. It was actually damn tasty. Unfortunately, Grandad Smith died before I got another chance to run down some squirrels for our cold fall morning breakfasts. That was the first and last time I'd had squirrel brains and eggs. I would love to be able to share that time with Dad and Grandpa just once more. (Sigh)
Pick up Reading HERE!
After breakfast we went out to split some wood for Granddad and split a cord of hard wood for ourselves. I started out with an axe, splitting the really big pieces at least in two. After that, to make them easier to handle and so they'd fit the pot belly stove Granddad had, I was splitting them with a 20lb sledge and a steel wedge. I didn't know that the 20lb sledge hammer was supposed to be really heavy and hard to swing, I was just splitting wood and listening to my dad, Granddad, and I think, Uncle Bill shoot the breeze. Clay was running around there somewhere too, I'm sure. Anyway, after about an hour of splitting wood, the hammer started getting real heavy and I started missing the wedge, or clipping the edge of it. I got the same old, "Dammit, hit it straight on or you're going to get yourself hurt". No shit. Ya think? Wanna swing the bitch for an hour yourself? Once again, it's so very true that it's the thought that counts. What I really said was "okay". I missed the wedge and clipped the side of it. A piece of that steel wedge shot straight up the handle of the hammer and buried itself in the outside edge of my bicep. Ouch. I had taken my long sleeve shirt off and was in a tee shirt. I said "son of a bitch", and dad looked at me. Everyone looked at me in fact. I had this neat little hole in my bicep, and when I set the hammer down, blood took a nice big SQUIRT then started running like a mad man out of the hole. "Go to the house and get a band aid, I'll put away the tools and we'll go to the doctor to see what they can do." I believe there were some G D's, and fucks in there as well.
We got to the doctor, he sprays something on it that at least numbs it up a bit, grabs a small pair of forceps (for all I know they were his roach clip) and dives in trying to get a grip on the piece of steel. And that's what he asks dad. Steel or iron. Steel. Good, he says, because I can play chase me with that all day in his arm and not grab it. We opt to leave it in. Suits me, another really neat scar to show the girls. Here I am, damn near 40 years out from that, and the thing is still cool. You can feel it under the skin of my arm. When I lifted more, it was easier to see and feel since I had far less body fat around it. It set off a metal detector at the Midland Airport. They wanted me. Then again. Then again. Then again. Going over the same spot at least half a dozen times, the rubbing my shirt like they could feel a detention device under a long sleeved shirt. I finally, after 5 tries, got me arm out of the shirt, showed the moron the scar, put his finger on top of the steel, then he wand it one more time. Either he got really excited and came a little, or he got bored, because after it set the wand off ONE MORE TIME, he let us go wait on our plane to Las Vegas. Where, in a strange quirk of fate, I didn't get pulled out of line, but an older Jewish couple did. How did I know they were Jewish? They had concentration camp numbers tattooed into their arms. I wanted to kick that stupid son of a bitch that pulled those two people our of line right square in the nuts so hard, he'd have to sneeze to take a piss.
All right, that's the Long Effing Blog That Got Restarted Twice. I hope it doesn't bore you to death.
Later Gator
It's been a weird Christmas/ New Years season for me this year. I was really looking forward to Christmas and New Years, then to get hit with a wicked assed infection in a spot where I'm fairly positive the Infectious Disease PA at MD Anderson thought they saw a spot, only to have it not be there eight days later on sonogram or CT Scan either one. Well, we all thought it was just a little water taking up space where they cut a tumor off my carotid artery. When I get a chance, I'll ask someone to see if an infection can lie dormant and kick off again if something triggers it. Wouldn't that be some shit now, huh? So we got that healed up, but man, it stole a lot of my energy and drive for the next 7-10 days. To be on the safe side I'm taking another seven days of antibiotic. That being said and done, I had a blast watching the kids (six year old Bo, along with the 27 yr old, and the 19 and 15 yr old babies of mine) open gifts. It really was one of the most fun Christmas's I'd had in a long time. It made what may be my last Christmas a true pleasure and joy. Having the Oldest Son and his family come visit for 4 days was really nice as well. I'm glad he's found someone that he's comfortable around (which means he's comfortable with himself, first. no easy feat there), and who also loves his company as well. And whose son has taken to my son like a daddy and friend both. That's damn nice for both of them.
I had, at one time this morning thought about putting in some of the stories of my Great Granny Wilson and other family members just for something fun to do. I'm still kicking that around, so don't jump ship on me yet. But, there's the physical and mental stuff to go over and get out of the way first and foremost. Without further ado, here we go: The infection that came on so fast and had my neck so swollen may have been a hide out kinda of thing. Only kicking in when everything was just right. Star Trek stuff that. I wish now that I'd taken a sample of the damn stuff so Hospice could have gotten a decent look at it from a lab point of view. My hindsight has always been way better than my on site decision making. But I think that's the norm, isn't it. I've had some honest to goodness pain in the right side of my lower jaw, which makes since because it's the only part of my jaw that's left. I'm hoping it's a muscle thing and not a cancer thing. Man, that would be super painful if the cancer would jump off into my bones, and since it had on the left side of my jaw, I don't see why the right side should get off any easier. Along with that has been a marked loss of my ability to get a good long, deep breath. It seems I was panting more and my heart was just hurtling along trying to get the oxygen to the places that need it. As much as I hate to admit it, the oxygen machine does me a lot of good. My pulse rate is down and my oxygen level is holding pretty steady now. The old cancer is just hop, skip, and jumping along on its own timeline and agenda. That tells me that it's moving along fast enough to make me wonder how much time I really have left. I can't let that bother me though. Okay, that's a pretty good summary of what's going on. Except that the hole in the left side of my neck where that infection burst through is still weeping off and on. Mostly off and on with mostly off the last couple of days.
So, when I was a kid around Thanksgiving and Christmas, depending on where we had the meals and other stuff, I got to see my only surviving Great Grandmother. In fact, Nora Wilson was my only surviving great grand parent, bar none. I don't remember meeting George Wilson, which would be my Great Grandfather. George and Nora Wilson would be my dad's maternal grand parents. I never met Great Grandfather Smith, dad's paternal grand parent. Nor did I get to meet the Rockwell or Green great grandparent's, they were my mom's grandparents. Kind of a drag, because at the time, I didn't even think about recording some of Granny Wilson's stories she told. And that puts me at a terrible loss, I believe. To put it in perspective. We go up and spend weeks or longer orbiting earth. I've seen the guys walk on the moon. Granny Wilson came to Kansas from Missouri shortly after her birth. Her family, the Lewis's were some of the first to leave Boonesborough and go to the frontier in Missouri. Yes, that Daniel Boone. Anyway, they moved into Kansas in a covered wagon. When she'd grown up enough, George Wilson and half of my family was on it's way to being. So, in her lifetime, Granny Wilson got to see aircraft that barely cleared the ground up to Jumbo Jet that can cross the ocean and safely land in less than 12 hours. She saw it go from a travel across the state go from a couple of days to just a few hours. She's seen the world go from full of exotic places to a world that can be reached in several ours and far more safely. In some cases the changes are so dramatic that they might be hard to believe. In her lifetime Granny Wilson saw things change faster than anything happening right now. It's amazing and a bit frightening how the country and world has moved ahead in the last 100 plus years, except we can't seem to get passed the point of trying to kill ourselves off with new and more lethal weapons. Strange isn't it?
Granny Wilson had a brother visiting her, or so goes the story, who brought his two greyhound dogs with him. Granny had caught the dogs coming out of the cool cellar where she kept the eggs so they'd not spoil and so you could eat eggs for breakfast in the morning. I'm not certain which kid was in charge of egg gathering. Depending on the year, it may even have been my Grandmother Mildred. That's kinda cool. Anyway, G Grandpa Wilson was off working someplace and that may have been the norm about that time in history. So, Granny catches the egg suckin dogs coming out of her cool cellar. She snags the 45/70 Springfield, and a couple of shells. She drops both dogs before they know whether what's hit them. It turns out that they are too big for her to carry the rest of the way out of the cellar. There they lay until GPa Wilson and her brother got home. There were some words spoken, according to my dad, but the brother got the dogs the rest of the way out of the cellar and left the next morning himself. Granny Wilson may have weighed a hundred pounds soaking wet. She delivered thirteen children over her life. She lost twins that died of smoke inhalation from a fire at the house. So eleven kids lived. She sent her sons off to WWII and all of them came home. My Grandmother Smith had her two oldest sons in WWII as well, and they both came home. A Marine who did a tour on Saipan as a BAR gunner. Her oldest did his time with the 555th Wolf Pack Anti-Aircraft battalion, across Europe, and saw the horrors of concentration camps.
They way my dad and his brothers and sister (Grandma and Grandpa Smith lost a daughter, but I can't remember from what) were raised would absolutely give the Politically Correct sissies coronary's, but they also learned to be self sufficient. My dads brothers tied him up to a tree once when he was little so he wouldn't tag along with them and their Uncles. I believe Uncle Tubs and Tom were about the older brothers ages. Dad went home, got a 22 rifle and kept them pinned for a while, even when he knew his ass was grass later. Dad also said at one time when he was six or seven, that his oldest brother Bill had done something to piss him off, and I can't remember what it was now. So dad goes to see his mom, my Grandmother Smith, who wouldn't have said a cuss word if her life depended upon it, and asked her "What does (insert slang for sexual congress here) mean?" According to dad, Gma about had a stroke, and asked where he'd heard that word. Dad said "Well, that's what Bill says he's been doing to Billy Clapper" who was a neighbor girl about Bill's age. Yes, Dad fixed Bill's little red wagon that day, but I'm almost positive that Bill got even some how somewhere. Imagine that happening now. CPS would have had all the kids picked up and shipped off to foster homes while the Grand Parents were placed under arrest and would have to fight for custody of their kids. What a crap hole we've slipped into.
I'm going to end this with a disclaimer. The Egg Sucking Dog Caper I got first hand from Granny Wilson a couple of times in 1972 and 1973. In 1975 I got moved up to the "adult" table. It paid to work on a rig when you're only 14, then turn 15 right before Thanksgiving. The "What Does (blank) Mean Paradigm" I heard from Dad a couple of times growing up. Surviving family, if this is wrong anywhere let me know. As much as I hate to admit it, this blog has taken me all day to get down because my chemo brain rerouted so much shit it was hard to dig up the times and places. There are a couple of stories that I will try and relate involving my dad, his best friend in high school and a couple of bonehead brothers that were too stupid to be drafted, but still in high school and picking on a guy, that if my memory is correct, was a little light in his loafers. We'll see how that goes.
Shortly after gaining access to the Big Table at family Holiday Functions, my Grandad Smith had a huge black walnut tree he cut down kick back and break his knee. The Fam goes up to visit and help with some things the Grandparents needed done before it got blisteringly cold. Dad and I had gone squirrel hunting about 200 yards north of the homestead in a set of woods that bordered the north side of Reece Kansas. We walked from Grandad's house into the woods, then East to darn near Harley Bolton's Machine Shop. Harley built his own steam engines to scale using his machine shop. It was neat as hell to go watch one run, and only now when I'm in my 50's do I realize what a great mechanical mind Harley possessed. Building a scaled down version of a steam tractor that actually ran and drove is no small effort. Boy, the shit your miss when you're a kid. Anyway, Dad and I bagged around 5 or so squirrels for breakfast, which of course meant that I got to clean them since I was the youngest hunting. Strange now that shit always went that way. Glance HERE, if you are squeamish move on to the next paragraph NOW. Gandma fried the squirrels, heads and all, and being more than a little perplexed I asked my dad why. "Because we are having fried squirrel, eggs, and biscuits with squirrel gravy. You use the heavy end of your table knife, and crack open the heads and put the brains on your eggs". Bullshit. Bullshit Bullshit Bullshit. I thought that, I wasn't stupid enough to say it out loud. Sure enough, when the squirrels were finished, and the scrambled eggs safely secured upon the plates, dad and Grandpa used the heavy handle on the table knife, cracked the skulls open, and put the brains on their eggs. Not to be left out, and wanting to look like I knew a thing or two myself, I followed suit. It was actually damn tasty. Unfortunately, Grandad Smith died before I got another chance to run down some squirrels for our cold fall morning breakfasts. That was the first and last time I'd had squirrel brains and eggs. I would love to be able to share that time with Dad and Grandpa just once more. (Sigh)
Pick up Reading HERE!
After breakfast we went out to split some wood for Granddad and split a cord of hard wood for ourselves. I started out with an axe, splitting the really big pieces at least in two. After that, to make them easier to handle and so they'd fit the pot belly stove Granddad had, I was splitting them with a 20lb sledge and a steel wedge. I didn't know that the 20lb sledge hammer was supposed to be really heavy and hard to swing, I was just splitting wood and listening to my dad, Granddad, and I think, Uncle Bill shoot the breeze. Clay was running around there somewhere too, I'm sure. Anyway, after about an hour of splitting wood, the hammer started getting real heavy and I started missing the wedge, or clipping the edge of it. I got the same old, "Dammit, hit it straight on or you're going to get yourself hurt". No shit. Ya think? Wanna swing the bitch for an hour yourself? Once again, it's so very true that it's the thought that counts. What I really said was "okay". I missed the wedge and clipped the side of it. A piece of that steel wedge shot straight up the handle of the hammer and buried itself in the outside edge of my bicep. Ouch. I had taken my long sleeve shirt off and was in a tee shirt. I said "son of a bitch", and dad looked at me. Everyone looked at me in fact. I had this neat little hole in my bicep, and when I set the hammer down, blood took a nice big SQUIRT then started running like a mad man out of the hole. "Go to the house and get a band aid, I'll put away the tools and we'll go to the doctor to see what they can do." I believe there were some G D's, and fucks in there as well.
We got to the doctor, he sprays something on it that at least numbs it up a bit, grabs a small pair of forceps (for all I know they were his roach clip) and dives in trying to get a grip on the piece of steel. And that's what he asks dad. Steel or iron. Steel. Good, he says, because I can play chase me with that all day in his arm and not grab it. We opt to leave it in. Suits me, another really neat scar to show the girls. Here I am, damn near 40 years out from that, and the thing is still cool. You can feel it under the skin of my arm. When I lifted more, it was easier to see and feel since I had far less body fat around it. It set off a metal detector at the Midland Airport. They wanted me. Then again. Then again. Then again. Going over the same spot at least half a dozen times, the rubbing my shirt like they could feel a detention device under a long sleeved shirt. I finally, after 5 tries, got me arm out of the shirt, showed the moron the scar, put his finger on top of the steel, then he wand it one more time. Either he got really excited and came a little, or he got bored, because after it set the wand off ONE MORE TIME, he let us go wait on our plane to Las Vegas. Where, in a strange quirk of fate, I didn't get pulled out of line, but an older Jewish couple did. How did I know they were Jewish? They had concentration camp numbers tattooed into their arms. I wanted to kick that stupid son of a bitch that pulled those two people our of line right square in the nuts so hard, he'd have to sneeze to take a piss.
All right, that's the Long Effing Blog That Got Restarted Twice. I hope it doesn't bore you to death.
Later Gator
Wednesday, January 1, 2014
It Is A Happy New Year
Of course it is, and why wouldn't it be? I survived an entire year so far. It's taking me down the road to Critical Mass, but it ain't made it yet, so this is a happy start to the new year. There are a lot of things that make it a good start, but I'm not going to get into those this trip out, I figure everyone has a reason this is going to be a good year for them, and those should kind of stay private at some level, if you catch my drift. I'm sitting here feeding, and it's kind of making me woozy, I hate that. Time for a shower, we'll catch up a bit later on in the day.
Hmmm, I'll be damned. As usual my body had other plans but didn't let me in on them at all. I put the computer down, sat back, finished feeding, and fell promptly asleep. Totally didn't see that coming at all. I certainly wasn't sleepy, or so I thought. I know I'd only had about three hours of sleep last night, maybe a little less even, but come on, geez. I find my body is doing a lot of things that it's not letting me in on in the least. This running short of air thing and my racing heart come to mind right away. I wish I knew what to do about both of them. It looks like I'm going to have to drag the portable O2 bottle around and just take off walking. I'll begin that tomorrow. Or so I say, unless my body says different.
I'll bet some of you are wondering if I've lost my damned mind. This is the year I'm supposedly going to bite the dust, buy the farm, kick the bucket, expire, meet my maker. Sure, that's probably going to happen. I slip a little bit at a time every day. Quite frankly I am still not so sure where I get the drive to stay at this living thing. Because I'm too stubborn just to quit is why. This is going to be a year of change, no doubt. I'm more than likely going to have a tremendous life altering event in my future. I mean, gee, croaking is pretty life altering. It will be a definite change in dynamics for the family, something I wish I could avoid, but know I can't. What I've done is set a goal of keeping the family involved, so when the time comes, they are a bit more prepared.
Last week, when that swelling turned out to be a very fast growing infection, and with all that I was losing in the way of fluid, I had a couple of minutes there when I thought "Shit, this is going to be the end of me. Honestly, my neck drained nothing but infected fluids and blood for the first three days after it split my skin to drain. It was awful. The minute I took off the bandage or wash cloth I was using to absorb the drainage it would be running either down my front or down my back with so much speed and amount it was hard to keep rinsed even in the shower. I'd never in all my life had an infection that acted like that. Even the bacterial infection I got from the dead muscle didn't drain like that. I stopped in a day or so, as far as draining went. And it didn't have the terrible aroma. I smelled like death, literally. Even the dog shied away from me those first three days. It was terribly hard to keep a positive attitude. Liz, though, was my rock and anchor. The times, during those first three days of that infection, that I thought "well, fuck. this is it, the infection is going to check me out ahead of time" were cut short thinking that I'd let Liz down if I died from some silly assed infection. I know it could happen, but not this time.
In the last month, I've had nearly equal good days, bad days, and neutral days. November, on the other hand, had nearly double the good days to bad or neutral. Shifts like that I catch pretty quickly. I'd like to hope that January is more of a November type month. We shall see. So far, on this the first day of 2014, I've been awakened with some pretty intense pain. I ran out of air taking a damn shower, a shower. Good Lord that's fucking sad, huh? I coughed up and right out the tracheotomy stoma a very large blood clot, and a couple of really nice, bright red loads of material, all while taking a shower. That's not really my norm, like I have any sense of normal left. The bleeding has, though, taken another chance at just lying still and isn't as intense as it was early on in the week. The first part of the week prior to Christmas, I spent a lot of time bleeding. I can't tell whether it's in a couple of spots in my throat (although that is one of them, as I discovered while covering the trach tube to cough. I blew a lot of blood out during those times), or in my trachea and heading lower as into my lungs. I know that is certainly a possibility, and in all likely hood a probability. If it does take a move into my lungs, that should pretty well put an end to me. I've got an online cancer buddy that maybe he didn't want broadcast all over, but he has some of the same problem I've got, only worse since it's entered his lungs and it making it incredibly difficult and painful for him to breath. Yet he carries on. He's one of the people from who I draw inspiration.
So, even with all this, it's still going to be a great year. Why? Not just because I said so, and that's reason enough on a normal day. It's because as I go along, I'm heading toward that long stretch of highway that's going to carry me on my trip through the next great adventure. The unseen land that is on the other side of this mortal life. Yes, I do intend on trying to find a way to communicating from that side of the shade to this side, rest assured I'll communicate. There wouldn't be any fun in dying if there wasn't some way to talk with you or other people and scare the bejeezus out of them. Or, like a little someone who tagged along with me from some road trip I did on the bike, and keep uncovering my feet. I simply asked that they end somewhere else to play with other people, and they did. This year, to me at least, January marks the beginning of the end. If I am to believe the doctors, and so far they've been damn correct, this is the first of the months in the year of my demise. I guess that means I've got to embrace the suck. And yeah, it's gonna suck. I keep dropping off, so this is where I end the blog today. It's crazy enough without nodding off for a fifteen minute nap every so often.
I'm setting in this bar in Victor, Colorado, on vacation with the parents at Wild Horn Ranch north of Divide. Divide, at the time, had a great little restaurant that was owned and operated by a chef that graduated the American School of Culinary arts. Since it's been over thirty years since I've been there, I wonder if that place is still open, and still serving the same great chow. Any way, I digress. I'd ridden my bike up there from Kansas, and was running around looking at stuff with the old folks, when we stopped in Victor. Mom and Dad were having Bloody Mary's with some of their friends who went with them, and I went to the bar to have a Crown and coke. I'm setting on a bar stool, breezin with the bar tender, who was very cute. No, dammit, it was a woman, not a man, sheesh. I was having a pretty good time and laughing my ass off. I went to the head, came back and sat down, and had just upended and powered down what was left of the drink I had, when another one gets slammed down in front of me and I hear "This one is for you from me". I slowly turn around expecting to be surrounded by either a real ugly woman, or a guy that's pissed for talking to his girlfriend. (that has happened before, and once when I was talking to an ex wife, the ex husband stabbed me in the chest with one of those really big, thick swizzle sticks) Only she wasn't all that unattractive, but she certainly was strong, and dressed in a nice gingham print dress, a faded out jeans jacket, and combat boots. Now, normally that wouldn't be a problem because I really like women of all types. Only this time my 'rents were cracking up, the bar tender was trying to keep a straight face, and the woman that bought me the drink looked kinda like she might kick my ass if I didn't drink with her. So I did. Then we danced. She was actually a pretty good dancer, except for riding my leg like it was a long lost bannister made for crotch rubbing by the lovely gingham dressed lady. I'm beginning to get a little nervous. Suppose the old folks, for a joke, jumped up and split. I was going to be at the mercy of Amazon in Gingham. And once again, that normally wouldn't be a problem, except the bar tender is now about to kill herself to keep from laughing. Had I been alone, on the bike it might not have been so nerve racking. No, this was Twilight Zone Episode 156 "Rock Gets Laid". Yeah, by a woman that would kick my ass if I did it wrong. I shudder.
The parents put an end to my misery and said they were ready to leave. I told the nice lady that I had to go, because I was those peoples driver. They loved to come to the mountains, but didn't like to drive, so they hired me to drive them where ever they wanted to go. I believe she didn't quite buy that, until I got out to Ma and Pa's Caddy. I opened and closed door like a professional driver, and split. Twenty years later, the Parents were still cracking up over that. And now, as I'm skidding into Critical Mass from Terminal Velocity, I wonder how badly Amazon in Gingham might actually have hurt me, had I been on the bike, drinking, and semi attacked. Much like Tootsie Roll Pops, the world will never know.
Love and all that shit. Eat your Black Eyed Peas, dammit. We skipped 2012 and look what happened
Hmmm, I'll be damned. As usual my body had other plans but didn't let me in on them at all. I put the computer down, sat back, finished feeding, and fell promptly asleep. Totally didn't see that coming at all. I certainly wasn't sleepy, or so I thought. I know I'd only had about three hours of sleep last night, maybe a little less even, but come on, geez. I find my body is doing a lot of things that it's not letting me in on in the least. This running short of air thing and my racing heart come to mind right away. I wish I knew what to do about both of them. It looks like I'm going to have to drag the portable O2 bottle around and just take off walking. I'll begin that tomorrow. Or so I say, unless my body says different.
I'll bet some of you are wondering if I've lost my damned mind. This is the year I'm supposedly going to bite the dust, buy the farm, kick the bucket, expire, meet my maker. Sure, that's probably going to happen. I slip a little bit at a time every day. Quite frankly I am still not so sure where I get the drive to stay at this living thing. Because I'm too stubborn just to quit is why. This is going to be a year of change, no doubt. I'm more than likely going to have a tremendous life altering event in my future. I mean, gee, croaking is pretty life altering. It will be a definite change in dynamics for the family, something I wish I could avoid, but know I can't. What I've done is set a goal of keeping the family involved, so when the time comes, they are a bit more prepared.
Last week, when that swelling turned out to be a very fast growing infection, and with all that I was losing in the way of fluid, I had a couple of minutes there when I thought "Shit, this is going to be the end of me. Honestly, my neck drained nothing but infected fluids and blood for the first three days after it split my skin to drain. It was awful. The minute I took off the bandage or wash cloth I was using to absorb the drainage it would be running either down my front or down my back with so much speed and amount it was hard to keep rinsed even in the shower. I'd never in all my life had an infection that acted like that. Even the bacterial infection I got from the dead muscle didn't drain like that. I stopped in a day or so, as far as draining went. And it didn't have the terrible aroma. I smelled like death, literally. Even the dog shied away from me those first three days. It was terribly hard to keep a positive attitude. Liz, though, was my rock and anchor. The times, during those first three days of that infection, that I thought "well, fuck. this is it, the infection is going to check me out ahead of time" were cut short thinking that I'd let Liz down if I died from some silly assed infection. I know it could happen, but not this time.
In the last month, I've had nearly equal good days, bad days, and neutral days. November, on the other hand, had nearly double the good days to bad or neutral. Shifts like that I catch pretty quickly. I'd like to hope that January is more of a November type month. We shall see. So far, on this the first day of 2014, I've been awakened with some pretty intense pain. I ran out of air taking a damn shower, a shower. Good Lord that's fucking sad, huh? I coughed up and right out the tracheotomy stoma a very large blood clot, and a couple of really nice, bright red loads of material, all while taking a shower. That's not really my norm, like I have any sense of normal left. The bleeding has, though, taken another chance at just lying still and isn't as intense as it was early on in the week. The first part of the week prior to Christmas, I spent a lot of time bleeding. I can't tell whether it's in a couple of spots in my throat (although that is one of them, as I discovered while covering the trach tube to cough. I blew a lot of blood out during those times), or in my trachea and heading lower as into my lungs. I know that is certainly a possibility, and in all likely hood a probability. If it does take a move into my lungs, that should pretty well put an end to me. I've got an online cancer buddy that maybe he didn't want broadcast all over, but he has some of the same problem I've got, only worse since it's entered his lungs and it making it incredibly difficult and painful for him to breath. Yet he carries on. He's one of the people from who I draw inspiration.
So, even with all this, it's still going to be a great year. Why? Not just because I said so, and that's reason enough on a normal day. It's because as I go along, I'm heading toward that long stretch of highway that's going to carry me on my trip through the next great adventure. The unseen land that is on the other side of this mortal life. Yes, I do intend on trying to find a way to communicating from that side of the shade to this side, rest assured I'll communicate. There wouldn't be any fun in dying if there wasn't some way to talk with you or other people and scare the bejeezus out of them. Or, like a little someone who tagged along with me from some road trip I did on the bike, and keep uncovering my feet. I simply asked that they end somewhere else to play with other people, and they did. This year, to me at least, January marks the beginning of the end. If I am to believe the doctors, and so far they've been damn correct, this is the first of the months in the year of my demise. I guess that means I've got to embrace the suck. And yeah, it's gonna suck. I keep dropping off, so this is where I end the blog today. It's crazy enough without nodding off for a fifteen minute nap every so often.
I'm setting in this bar in Victor, Colorado, on vacation with the parents at Wild Horn Ranch north of Divide. Divide, at the time, had a great little restaurant that was owned and operated by a chef that graduated the American School of Culinary arts. Since it's been over thirty years since I've been there, I wonder if that place is still open, and still serving the same great chow. Any way, I digress. I'd ridden my bike up there from Kansas, and was running around looking at stuff with the old folks, when we stopped in Victor. Mom and Dad were having Bloody Mary's with some of their friends who went with them, and I went to the bar to have a Crown and coke. I'm setting on a bar stool, breezin with the bar tender, who was very cute. No, dammit, it was a woman, not a man, sheesh. I was having a pretty good time and laughing my ass off. I went to the head, came back and sat down, and had just upended and powered down what was left of the drink I had, when another one gets slammed down in front of me and I hear "This one is for you from me". I slowly turn around expecting to be surrounded by either a real ugly woman, or a guy that's pissed for talking to his girlfriend. (that has happened before, and once when I was talking to an ex wife, the ex husband stabbed me in the chest with one of those really big, thick swizzle sticks) Only she wasn't all that unattractive, but she certainly was strong, and dressed in a nice gingham print dress, a faded out jeans jacket, and combat boots. Now, normally that wouldn't be a problem because I really like women of all types. Only this time my 'rents were cracking up, the bar tender was trying to keep a straight face, and the woman that bought me the drink looked kinda like she might kick my ass if I didn't drink with her. So I did. Then we danced. She was actually a pretty good dancer, except for riding my leg like it was a long lost bannister made for crotch rubbing by the lovely gingham dressed lady. I'm beginning to get a little nervous. Suppose the old folks, for a joke, jumped up and split. I was going to be at the mercy of Amazon in Gingham. And once again, that normally wouldn't be a problem, except the bar tender is now about to kill herself to keep from laughing. Had I been alone, on the bike it might not have been so nerve racking. No, this was Twilight Zone Episode 156 "Rock Gets Laid". Yeah, by a woman that would kick my ass if I did it wrong. I shudder.
The parents put an end to my misery and said they were ready to leave. I told the nice lady that I had to go, because I was those peoples driver. They loved to come to the mountains, but didn't like to drive, so they hired me to drive them where ever they wanted to go. I believe she didn't quite buy that, until I got out to Ma and Pa's Caddy. I opened and closed door like a professional driver, and split. Twenty years later, the Parents were still cracking up over that. And now, as I'm skidding into Critical Mass from Terminal Velocity, I wonder how badly Amazon in Gingham might actually have hurt me, had I been on the bike, drinking, and semi attacked. Much like Tootsie Roll Pops, the world will never know.
Love and all that shit. Eat your Black Eyed Peas, dammit. We skipped 2012 and look what happened
Tuesday, December 31, 2013
Ooops, I Missed Some Days.
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.
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.
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
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