Saturday, August 23, 2014
There Are Days
There are days when I don't feel quite like the person people think I am. Days when I'm not too inspiring to myself. Days when I don't feel like the toughest man folks know. Days when I'd just as soon stay in bed and not move much. When feeding is more a pain in the ass, and only done because I have to feed, not that I'm hungry. Days that asking for help is needed, because I don't like to have help very often, but when I ask for it, I've got to be feeling really hinky. Days when even if I get feeling a little better in the afternoon, I'm still not worth tits on a boar hog. Days when I can feel old Baxter U. Bastard cancer getting the better of me. More oft than not, lately. Like I told my brother John Moye, "It's finally wearing me down, Pancho". It is, tumors growing, not being able to breathe well, (but oddly enough my blood Ox stays in the mid to upper 90's, figure that shit out) muscle soreness, quick pulls, all of it is adding up on me pretty quickly. This is one of the Days When I'm Not So Perky. I've made it longer than the doctors thought I would, what with how fast the tumor grew before and after it came back this past year. Apparently they didn't take into account that my body ate the first primary tumor 6 years ago, and what we treated was a secondary spot. Those Days were the Victorious Days. I made it nearly 5 years between diagnosis's. I told people, kind of gaudily, "When did you know me not to end up exactly like I wanted? Or not get anything I didn't really want?". The answer then was truly, never. Makes even us thinking folks wonder about the Karma Police and if all this isn't some very bad assed cosmic payback. I think so, I have been overly confident to the point of damn near cocky. Some, in fact, would say I was very cocky. I figured I was just confident enough that I could even ask if I didn't know. That's not cocky, is it? Hmmmmm?
So if it IS a bad assed cosmic payback, I've probably earned it. I've done pretty much as I've pleased for over fifty years. I count them all from about 3 up, because I played a lot by myself, and did as I wanted as long as I came in when I was called. Over 50 years of doing as I pleased, and when I was 17 and up, some of it wasn't always what you might call morally significant. I mean, hell, I never killed anyone. I did strong arm a guy once, That was particularly bad. A guy that worked for Ben Smith braced me up one night. After the place closed, I followed him out to the truck stop and we had a close personal discussion about fucking with people you don't know from sic em. Another of his guys got gut shot by a .38 wadcutter bullet. I don't know who did that. I had the cops called on me once, for knocking the piss out of a guy at the old Safeway downtown LK. I wouldn't have, but he knocked the fuck out of his toddler son right in front of me, couldn't let that go. I was a bit on the selfish side for the biggest part, not quite the helpful person I am now. Folks asked, back then, why I didn't date or why I wasn't married. I didn't lie to em, I was too busy doing what I did best: work, drink, screw, and occasionally have a short but mean fist fight. Right up until a guy I knew accidentally hit a guy at a little bar in Baker Ok, I believe it was Baker, the guy that got hit tripped and hit the back of his head on a car bumper and killed him stone dead. The guy that hit him couldn't hit hard enough to fatten a lip, but that day he killed a guy and did 5 years in the OK State Pen. I backed off being so quick to throw down. I did a few times, but only if things looked too lopsided for me to stand still. Looking back it's when I started to notice that more guys a little younger than me had gotten more chicken shit. They either had 3 or 4 of them on one guy, or they put the boots to em when they were down and couldn't fight anymore. Chicken shit and cowards. Some of those guys, before they moved on with the oil field, got lesson's in being more "Manly" in the way they fought. We had a kid work for us that was a good fighter, or could be, but he was more a blind sider and fighter of people far smaller than him. I hope he got his life together as he got older. I lost track of him after he quit working for dad. If it is a cosmic payback, I did my part to earn it.
So, I'm sitting around today thinking how in the hell did I get to be an inspiration to anyone? I didn't seek it out, all I wanted to do was help some of them be less afraid. I mean, Jesus, I never had more than a hand full of friends at any one time, until I was in my early 40's. I just didn't let that many people in my life with me. I never tried, I don't think, to inspire anyone. I said things to some folks about not quitting unless they were absolutely sure it was the best thing for them. We talked about how the effort is as important on a personal level as winning is on a larger scale. That working on being better for yourself is always a win, regardless of the outcome on a score card. I never did well on the score card, so maybe I was bolstering myself. I know a couple of people that stayed with the sport they liked, though, and even got far above average at it, for themselves. I was pretty old when I tried being an athlete again. Damn near 40 when I went back to the gym, with 20 plus broken bones in the past, and some joints that wish I'd just stop doing much of anything. But, I stuck with it. I didn't have a goal, I just liked doing it. I got strong, then stronger. By the time I set a goal I was 46, hit it at 47, got sick that fall and turned 48 with chemo therapy eating away my muscle mass. Radiation got the rest that year. I made a goal after Scarborough Faire Ren Fest Highland Fling. 75% of what I had maxed. I that goal, plus a bit in 18 months. Faster than I thought it would come. The best thing, gravy on the taters if you will, was that I wasn't so wound up. My joints liked me better, the bike liked me better, the family liked me better……I think. Just when I hit my stride with work, family, bike, athletics, friends, and myself. I get kicked in the ass again. Some shit huh? So how did this become an inspiration? Got me.
I told the folks I consider friends (a helluva lot more than a handful these days, and glad to have them) that I was going to be honest with them about this cancer. Eight months later, I said I would be honest with having terminal cancer. A month or so after that, I was convinced to start a blog. Not what the fella expected, but a blog all the same. I promised I'd be honest here. That the reason I started it was a number of private messages and people coming to me who were afraid. Not for themselves always, but for family, themselves, and friends. They wanted to know how come I wasn't afraid. I still don't have a good explanation for that. Fear and being anxious are two different things. I've been anxious about situations, but never afraid. That's weird. I've been shot at, that didn't scare me, and I think it should because the person was dead serious about hitting me. (I learned how to look for tell tale signs of wedding rings immediately after that) So how in God's name did I ever inspire a soul? It's been explained several times, but I'm a bit block headed and still don't get it. How weird is that? Why is it so difficult for me to take a compliment and just say "Thank you very much" and let it go at that, rather than question myself so harshly? Will The Shakes wrote "The good that men do is oft interred with their bones, while the bad lives long after", true enough, I'm sure. Is it that I'm trying to shake that? Could be. Could it also be that I am worried that people who don't much like me, are going to come out of the woodwork after I croak and tell everyone in my family what I did to make them dislike my ass? That's possible. That may be why I shake the "You're an Inspiration" tag. So I can hold that negative part at bay as long as possible. I've passed a bad, bad, gene onto my younger kids. The genome of "Judge yourself more harshly than is needed on everything". In some ways, it's a good thing. Okay, in very few damn ways it's a good thing. It's helped me be more conscious of how I worked. Double and triple checking things, learning to do a lot of things efficiently so I could actually spend the least amount of time with the highest results. Because I questioned myself all the time, and harshly. This would be my best explanation as to why I'm not seeing myself as an inspiration.
By the by, if this is a repeat, forgive me. Cancer Noggin sometimes shoves it's way into my blogs.
One lesson I like to give everyone: Never, ever let them see you sweat. You're ass could be a breath away from an ass whipping. Don't let the other person know you're the least bothered by this. If it's something at work, breathe slowly, let them have their way. Eventually you'll be able to snap it off in an incompetents ass. It's refreshing to do that. I've opened up on two of my bosses with both barrels. One time nearly got me fired. The next boss that came along 4 months later, fought to get me a well tech position. I guaranteed him he wouldn't regret the decision. That I'd live up to my hype. The first well failure meeting we had I was so nervous I had three gallons of sweat trapped in the crack of my ass. All of my bosses said that we could do better, but for the first time I did very well. They didn't see me sweat. HA HA HA. We did get better, and faster.
Allright then. Take a look at yourself. If you look good, you can sleep well with 75% of your decisions, you're okay. Live your life like you steal each day, in a sense we have. Be fun to be with, serious when it's needed, and full blown bat shit crazy if you have to be, no one will think less of you.
Tuesday, August 12, 2014
Well, That Was A Mistake
Well, yes, I made a mistake that made me absolutely miserable and I feel that it made Liz worry unduly. What I did was order my Fentanyl patches on Friday morning, and expected to see them at my house no later than early Saturday afternoon. Well, I blew off Saturday afternoon listening to an audio book, and by the time I asked Liz if it had been delivered, it was too late anyway. She said, no, it hadn't been delivered. Okay, no big deal, I can hang with it for 48hrs or so, since I wasn't due to change them until midway through Saturday anyhow. Boy, did the pain and withdrawal symptoms make a liar outta me! Yeah, the pain on Monday morning was hangin in there about an eleven on a scale of 1-10, ten being worst. I've had more than my share of broken bones from first grade right up until 2010, when I broke a finger, set and taped it, and went right on working. So yeah, I've got a fairly high threshold for pain, but this was something new and noticeably unwelcome. Since Fentanyl is an opioid, it causes withdrawal symptoms. I believe I had some of those. Sweat, chill, sweat, chill, chill, chill, chill, sweat. I've been taking it for almost a year, in varying strengths, until I got to this point that is 200 micrograms per hr (two 100 mcg patches) so I'm pretty well taken care of pain wise. Yep, not pressing the issue about "where the hell are my meds" was a mistake I'll not make again….hopefully. If it hadn't bothered Liz so much I wouldn't have sweat it so much myself. Stressing Liz anymore than she already is makes me feel like a real ass weasel. So, for the simple fact that I don't want to stress out Liz any longer, I won't be forgetting to keep my meds up to date.
I seem to be having more trouble staying focused as well. Not to the point of working away and suddenly thinking "Squirrel!", not quite that bad anyway, yet. It's more subtle, like just floating off to another spot on the same page and rereading over and over. Dopey but true. I've reread the same page of one of my books at least 6 times, that kind of trouble with focus. It's annoying, but not as troublesome as one might suspect. I'm fine driving, and that sort of things, but with reading, as well as writing this blog, it catches me off guard. I stop frequently, these days, when I work on the blog, simply because I've found myself writing the exact same thing in paragraphs half way through the darn thing. That would be just horrifyingly redundant. Not only redundant, but it would make me feel like I'd lost all control of my faculties, and that scares the bleeding hell right out of me, dammit. Of all the things that the cancer could have of mine, my mind is the one thing I'll fight every day, all day, 24 hours a day. My highest hope is that I kick the proverbial bucket before Baxter has enough of me that he tries to get my mind as well. According to some, that won't be a very long road at all. HA HA
I also have noticed I'm getting more "Phantom Pain" on the left side of my jaw. You know, the one that doesn't exist any more. It's weird to wake up in the middle of the night with a tooth ache in a spot that hasn't had teeth since Late October of 2007. The worst one of the Phantom's so far hit on Tuesday of last week. There I was, happily snoozing away, when it felt like someone had hung a HUGE right cross upon my lower left jaw. It hurt so bad, so fast, that I was taken completely off guard. I sat up in bed, kinda gave a little gurgling yelp and hoped I hadn't woken Liz. Nope, she was still sawing logs and was peacefully oblivious to my aching tooth that hasn't been in existence in 7 years. It rattled along aching away for the better part of two hours before it let up enough I could sleep. Of course by that time I was feeling like I needed to be up so I could help Liz get her coffee and s bite to eat. This seems to be happening more frequently as well. If it were a SciFi story, I'd say my jaw and teether were going to grow back as soon as they Phantom Pain Stopped. Somehow, I don't think that's the outcome that is going to happen to me now.
One would think that the most pain I have is in my face, neck, and shoulders. That's not where I find it now. My right leg carries the brunt of my pain now. From where my hip ties into my pelvis clear to the top of my knee. It's not a throbbing pain, it's more extra tender to the touch. Some of that may be that I've got lymph glands near there that are probably compromised from the cancer, seeing as how the Cancer liked those too. If I can, I'll try to get those to drain a bit, and maybe back some of that constant pain off a bit. If I get exceedingly tired, my right leg tends to hurt the most. I'd been used to chronic pain for quite some time. The broken fingers don't have great circulation, and my broken ankles don't give my feet much circulation either, so they tend to suffer in cold weather. To keep them warm I tend to go overboard, which makes them sweat, and that makes them cold on their own as the boots and socks get colder. The warmest foots are always the driest foots. The pain I do get in my face, neck, and shoulders, generally comes from cramping of the pectoral muscle in my mouth. A lot of things can set that off. Over exertion, overly tired, a very hard cough, things along those lines will make the muscle cramp, and I'm telling ya, they aren't easy to shake. Once in a while, when that muscle cramps, it puts a strange taste in my mouth. Not spoiled, but strange. An almost citrus taste. Odd, but not as disconcerting as it was say sixteen months ago. The darn thing gets hard as a rock, then makes weird tastes. Gotta love the cancer man, never a dull moment.
I suppose in the grand scheme of things this is pretty small potatoes, this cancer, myself, and how I'm trying to work my death. There are far greater things going on in the world as a whole. The Mid-East is still in the turmoil it's been if for 3,000 years. The players are all basically the same, the only difference is what they call themselves. I would imagine that if we were to check into any of the places where there is a large conflict going on, it will probably be the same bunch of people versus the same bunch of other people. Religions may have changed names, the conflict may have different reasonings, but it's going to be the same bunch of people fighting over the same bit of ground one way or the other. Silly really.
So I hope I'm accomplishing what I set out to do when I got pressured into doing a blog. Put myself out in front of the cancer. Tell people the truth, with all the warts, swearing, and pain that goes along with what I'm fighting. Quite frankly I am so very tired, physically and mentally both, that if it all ended tonight, I do believe I'm ready. If not, then I keep on trying to thwart Baxter the Bastard Cancer, and keep letting folks know that it's never best to just kick in and let the cancer win. Fight that damn thing at every turn. When your body is worn out, it will let you know. Until that time, you owe it to yourself not to hang up and quit, but to carry on as best you can. Even when the odds are so stacked against you, let that be your driving force. To beat at it until one of you has to give. The Spirit always wins in that case, even if the body does, YOU haven't lost.
Be good, kids, laugh a lot every day. Be the ball Danny, be the ball, be, be be….I can't Danny, I'm a veg. Hmmmm how the hell did Caddyshack slip in here? HA!
Monday, August 4, 2014
Sleep Silly Boy
I am beginning to sleep almost 50/50 day and night. Not quite, though, because I can't seem to fall asleep this evening. I'm not sure why, unless it was the five hrs I slept between Noon and Five PM. I made some B-nana and Chocolate Puddings from scratch. Then, after the Chocolate cooled enough, I put it and B-nana pudding alternating in parfait glasses and topped them with home done Whipped Cream. The directions say "cover with plastic wrap so the pudding doesn't get a 'skin' on top as it cools". When I was a kid, that was my favorite part of home made pudding. Even if it was Jello Pudding mix, it got that extra cool skin on it while it cooled. I can almost taste it just talking about it. Wild isn't it? The damnable shame of that is I can't taste or smell it, but when I'm cooking it, I can see my mom standing over the stove in the kitchen in our house in Gorham. One time in November of 1963, mom was making chili for our supper, I was in the living room watching TV, then ran into the kitchen to tell Mom that the President had just been shot. She came into the living room and checked. Sure enough, President Kennedy had been shot. It was the first time I'd seen Mom cry. Neither Mom or Dad voted for him, I found out later, and much to my poor judgement, I never asked why that got such an emotional response. It was, though, a seemingly simpler time and I firmly believe the amount of cynicism was very low. To be honest, Kennedy saw farther ahead than the politicians today. Into space and land on the moon before the end of the 60's? Bold statement that based itself on the idea that the USA was a great nation and that we could and SHOULD lead the world. God I miss that kind of pride in the country
Man, I am becoming the Sleep King (tonight excluded, too long a nap), I can rattle off time in the sack, then a nap in the morning or afternoon, or both. I had close to a five hour nap this afternoon, which is like a straight sleep for me during my healthy period. I've got stress issues in worrying about the family. They do okay for a while, then it's a bit of a high tension and stress, then they go back to being almost all okay. It's very hard for a family to watch a parent slowly dying. Really slowly. At times I think I've been here around four to ten months to fucking long. When I ache all over, then get a sinus head ache, my joints start to snap and pop, and at times I can't get my left arm over my head. I swear it's enough to make you step off the curb in front of a bus. Okay, not really, but you get the drift. I believe that maybe I'm not seeing enough of the big picture, but rather those little anecdotes that pop something loose in my memory, and in turn that sends me spiraling into the Land of Tiny Details. It gets to the point it's like not seeing the forest for the trees. I hear quite often that I'm still waddling around because of some unfinished business with the Alpha and Omega, The Beginning and the End. I truly wish if that were so, I wonder if we can expedite the process. I can't see what I'm missing, other than some things at home. Those things are being attended too right now, I'm hoping that is all that I need do. Or, I wait to see if this is all that I need to have finished, then I can lay down and rest. Never in my wildest dreams did I ever picture myself as an inspiration to others. At times I can't inspire myself, let alone family or friends. What a pisser of a note, huh? This evening, into these wee hours of the morning, I've vacillated between being up, and being down. I'm here to tell you that is some boring shit. And completely out of character. If you can show me where and how, it won't be a bid huge fall, and decent cushion on the bottom makes it a nice ride. The entire business of being terminal is just so disjointed, it won't allow you to make a set schedule. That's only going to get worse. Sooner rather than later, I hope. I'm practically worn out to the bone, I'm exhausted physically and mentally. I would love to have one day where all I had was the old sore knee with a pop that sounds like a .22 Long, the shoulder that creaks like it needs some hinges oiled, and the occasional cough and sneeze from some of the blooming plants. Mesquite always, cotton not always, and a large and sundry list of DNW's and wildflowers. (DNW's are "Damn Noxious Weeds")
Okay kids, contemporaries, family, nurses, doctors , friends, and the strangers with a kind word or small deed. I notice, even when you think I didn't, I notice and am grateful for all of you.
Roc
Friday, July 25, 2014
Screw You Guys, I'm Still Alive
You should hear Eric Cartman's voice when you read this title, otherwise it's just not funny. But, it's also true. The Doc gave me a year, actually 4-6 months, then through in "Well, nothing is written in stone". I said, well wrote down "Nice CYA, Doc". He said as well that I more than likely had 6-8 months in reality, because the cancer was so aggressive, and had thrown in so many smaller tumors in just two months, and all of those in areas they'd all ready operated upon. Liz wasn't there for that fun and games explanation, because she was so upset that I didn't feel she needed to hear that part of the wonderful news. There are still things that may happen as well, that I didn't tell her, and won't either unless the symptoms raise their ugly head. So here I am, a year later, bumping along like I had good sense and nothing much beyond that. Yes, I notice things now that I didn't before. The steps I lose now don't give me the chance to ease into them as much as the ones that popped up earlier. Little shit just exhausts the hell outta me, and even my skin feels like an old shirt, but not as comfortable. So another year, and a battle for the new goals of seeing two new grand babies before I kick that bucket down the road. Time and I shall tell the tale. If I can hold onto the the damn stubborn side of me, be meaner than Baxter (since I'm not as nice as some folk think), and simply hang onto wanting to hold my own kids kid just once each. One time, that's all I need. That and having a baby asleep on my chest one more time, that'd be two tits and a cuppa Joe.
The new thing is since the lymphedema treatment wasn't helping me to drain the fluid in my tissues as well as before, the therapist and I said "stop. It's not helping any longer". That was true, for certain. That was eight days ago. Four days ago I woke up and could't see. It felt like my right eye was just matted shut. As I felt around though, I knew right away what it was, swelling. Shit, I didn't leave the house just for kicks and go get a into a fight. Did I? No, I didn't. I'd not seen my eyes look like that since a time back in 1983. Even then it wasn't both eyes, just my left one. My buddy John Moye said "Now you look like Jerry Cooney after the Ali fight". That cracked me up, and we went bat shit with that for about 30 minutes. We are two twisted individuals, but laugh more than either one of us probably should. That's two people that help me laugh at things when other people just look at me with pity and near fear.
Laughter, that's one of the things, and probably in the top three or four things that that help me along. First, of course, is the loving, lovely, and sensual wife. The Rock, The Anchor, friend and lover. She is the main reason I've made it this far. My kids and siblings are great, but my wife, fabulous. Every time I get down, I see her and think that I can't leave yet, I've not had enough time with her. It kills me when I see her down, and I'm helpless because my situation is what is hurting her heart. That's a tough thing to saddle up with daily, but it is also part of the nature of this, or any other terminal disease I'm sure. So, we laugh. I laugh at myself, then I laugh with Liz, because quite honestly what's left? Constant depression? Quitting? No, those two false feelings are no fucking good at all. So we laugh. We laughed all the time when I was in good shape, so why not now. I can't make any sounds, but I'd be laughing so hard the walls blew out if I could. The wife and my best bud, they are so, so concerned, and yet to help me out, they bury that and laugh with me. That's a sacrifice on their part. On my end, I sacrifice so they don't have to sweat so much. What do I sacrifice for them? I'll never tell.
Sidebar : Liz and I went to Lowe's to pick up a shower head. They had bottled water on sale for $4/32 bottle case. We shopped a bit, looking for things to get for the yards and patio. I was taking the cart back, when a man and wife, with all 3 of their kids walked past. I offered them my cart, they both waved me off, and as I walked back after putting my cart away, they stepped in and grabbed another cart. Talk about fucking humiliation. Before the comments come in with "Maybe they thought they needed a cart after all", I saw them whip out a list that could have been DR. Zhivago as long as it was. Rotten, razzer frackin, flimm flammin, fart biters anyway!!! I must assume, they are simply ignorant pricks that really aren't my intellectual peer, and more than likely have an unresolved Oedipus Complex and a married woman who has an overwhelming Daddy Issues. Thus ends the rant.
Tonight (The 25th day of the 7th month, in the year of our Lord Two Thousand Fourteen) we are going to take pictures of Fat Girl with some other stuff going with it. I wanted them so for the memory board at my memorial. The guy doing the pics is very good at what he does, and I want to see if he can do something special for me with one of them. It's kind of my last hurrah with Fats. Short ride to the park we are going to take the pictures. Fats is in pretty good shape, and she has always been a great ride as well. Then tomorrow or Sunday she gets a trip to Grand Prairie where she will be ridden and enjoyed, hopefully as much as when I had her. She's a good girl, and she likes best to run out the highway. Get the schools under your belt, get the license, ride something lighter and shorter first. Don't rush it, Fats will let you know when it's time. Enjoy the shit out of her. She's a bitch getting into neutral, but she runs like a scalded assed ape, that's for sure. Where she thinner, and a bit shorter she'd break that 125 I've tagged her at. Be careful on her, respect the fact that if you get careless with her, she'll kill ya. But mostly, when you get to the point you don't think you can move anymore because your so stressed and you don't want to blow up at the family, putting your ass in the saddle and just cruising, even if it's just bouncing around the neighborhood, will pull that out of you. It did me anyway. So, son, be very careful with her, you've got a new baby coming. Steph, and the kids need you more than you need Fat Girl. I love ya, enjoy the ride, man. If you can have as much fun as I have (with or without a bike to ride) your life is damn full.
Okay, boys and girls, lets all go enjoy our weekend. Remember too, life is a roller coaster, and the sooner you relax and go with the ups, downs, and circles, the sooner it becomes more than fun.
Saturday, July 19, 2014
What Makes Me Want To Bounce A Round Thru A Person
Well, several things, actually. But, the two word phrase "I Can't" just makes my blood scream for a fresh hollow point for the hand cannon. Can't, can't, can't. Paralyzed, those folks with birth defects that either keep them physically or mentally from being on top of their game, Can't is acceptable for them. Some diseases, Parkinson, Alzheimer's, those are a couple that come to mind quickly. All those things are outside the person's ability to control that portion of their lives. What I'm talking about is hearing "I Can't" from perfectly healthy people who would rather quit trying, or NEVER try at all. Christ that burns my ass. "I can't!". Why? "I don't know how." That's not a "can't" problem, that's an education problem. Let me explain. It's within a person's ability to learn how to do "X". That puts it within your grasp, so that you CAN. I would rather hear, "Right now, I don't know how. Would you show or teach me?". Well hell yes I'll teach or show you how. That puts it as a learning curve and eliminates "I Can't". IF (huge word for only two letters) it shows that a person doesn't have the physical or mental ability to do said project, it's still no longer an "I Can't". It has become an "Unable". Explanation of why I see it that way. "I am unable to do that job. I've learned and practiced, but it is still beyond my ability." That sucks the life out of "I Can't" like nothing else. Am I able to play football? No. Was I ever able to play? Sure. Since I am unable now, doesn't allow me to say, "I Can't". I've heard "I Can't" so many times in the last two years I've been on disability I've lost track. There is no age limit to the self destructive "I Can't Syndrome", either. Six to Sixty or older. The time is approaching that I will no longer be able to drive. I'll become a hazard to myself, but more importantly to others on the highways. That's frightening to me. It's not an "I Can't", but rather an "Im physically unable any longer". The entire time of one's life should be a learning experience. Something that "I Can't" won't be able to touch. It's an attitude, carried proudly from one end of your life to the end of your life. I hope, almost beyond hope, that young people can change and follow that, instead of quitting before you've even begun.
Boy, that was a self righteous rant, huh? Tough shit, my blog I can be self righteous if I want. Bwaaaahahahahaha. (That's an evil laugh, don't ya know).
I'm counting my days like this, now. One good day, one really bad day, the other five are bad in general. What that means is that taking them as an average, that's how I feel now. Between last week on the tenth, and this week on the seventeenth, my lymphatic system above my collar bones has shut down. For the most part, I really don't know for certain if it's completely shut down, all I can say truthfully is that I don't drain fluid thru my system like I did on the tenth. When we started this Lymphedema Therapy, I told my therapist that I would tell her when we were finished. She didn't trust me then, or on Thursday either, but I fooled her and told it was over before we even got started. She asked if I still wanted a session. I wrote, "Yes, on my right leg. I'm limping again and it's very tender."
She saw it right away, and before I left, I wrote how much I appreciated her help and how we did the best we could. I told her how much she helped my life be more normal than I would have thought possible. There are a couple of factors that happened on Thursday that you all will never see nor will I write about them on Facebook, or in e-mail for that matter. Suffice it to say that what I saw in my mirror told me the time was up. Within five hrs. of waking up, I'd made my mind up that we had come to that intersection of this road that we should quit the therapy. After tears from the nice women and longer than necessary manly hand shakes and slaps upon the back, I hit the road, knowing that for 14 months, my life was better because the therapy was able to help me from swelling so bad I couldn't move my arms. I will work doubly hard at home to help prevent that if it's possible. So far as I can tell, I've got my work cut out for me. I've already got a lymph gland under my left arm that's swollen. Not tender, though, so it may be Baxter showing his face.
Four more days since the Doctor at MD Anderson said, "Mr Smith, Mrs Smith, the cancer has returned. There are no further surgeries we can do for you, as we've taken all the bone and tissue that is safe. The chemo therapy is no cure, and may give you an extra month or two. Radiation, as well, is out of the picture, you've received the maximum dosage in 2007 and 2008. All that's left is palliative care, and that we can set up here. We've made the appointment for as soon as you leave here, if you wish."
Poor Liz, she broke out in tears. The new doc didn't know me well enough to speak up, since I'm hard of hearing. Worse now, by the by, thank you. So I didn't hear "Palliative". What I did hear was "Mr Smith, Mrs Smith, waaa wa waa wa. Wa wa wa, wa wawa wa. Wa wa wa wa, wawa wawa wawa". then tears. No fool am I, I asked Liz to step out so the Quack…ummmm Doc could have a word. So, the word I got was 8-12 months. With Chemo? 8-12 months and being sick. "Would you like to be on a clinical trial for new chemo therapy?" Will it cure me if it works? "No, but it might make you live longer" How long? "Two or three months, but it is very harsh and you'll be ill" Ever throw up without a soft palate to keep it from coming out your nose? "No, I've not" Fuck the Clinical Trial then. Fairly much word for word. My only wish then was, that I had a full voice with which to tell him "Fuck the Clinical Trial, then", darn it. So this has been my last year. Waiting, working on keeping myself as healthy as possible, having fewer and fewer good days, watching my energy level drop off slowly. Bad as it sounds, it's life, isn't it. Some, including myself on really, God awful bad days, say it's not much of a life. That's true, but it's my life, and I've got to live it as fast and far as I can carry it. I'd love the bike, Fat Girl, to be a bigger part of this part too, but alas, for the moment anyway, she's off limits. This I hope to remedy shortly.
Alright, kids and adults, and adults who still think and act like kids (generally we live longer. i'm not the rule, but the exception that proves the rule). Go forth and have as much fun as you can muster.
Monday, July 14, 2014
The Weekend, Take a Beating, and Keep Ticking…Mostly
Liz landed into her second Highland Games like a trouper! I am so proud of her I could burst a seam. If I had any left that hadn't already burst that is. She is amazing. I kid you not, amazing. Several of her distance throws were over a foot farther, one was just over 3' farther. You've no idea how big that is, in terms of improving, without having the time to practice, nor most of the implements. Somewhere along the line I've gotta scrounge some equipment for her. Some I can make, others, well, that's gonna be more difficult. She is going to be a great athlete, shit, she is ALREADY a damn good athlete, and better than I think I ever was. She has determination cut from solid steel. She knows how, almost intuitively, and has muscle memory from high school from track and field then. She takes direction well from a woman I think is one of the best coaches around. She's quiet, to the point, and will tell you exactly at what point you are screwing the pooch. I could feel it, and she could see and tell me, but I never seemed to be able to connect the two pieces. Shamefully I say, but she'd tell you I was just hard headed. Anyway, if Liz keeps this cooking along, and uses the very nice woman for a coach, she'll be very good. Liz put up very good numbers, and took I believe a very respectable third place.
All of my wishing and wanting isn't changing the fact that I'm no longer the big dog distance and time rider/driver that I was two years ago. Hell, lets make it simple, even six months ago I could drive longer and farther without feeling like someone has pounded the piss out of me all the way around. Now, yeah, it's a bit like that. So, Liz and I leave about four hours later on Friday than I intended because I'd been about half woozy and somewhat unsteady that morning. From 0300 until just after noon. Unsteady enough that I didn't trust myself driving even the short distance to pick up stuff I wanted, but didn't need, really. So I rushed around, sliced up the bread I baked to share with the other athletes, and whipped up a little honey butter, and off we went. At 1400 instead of 11 or 1200 like I was really wanting to hit the road. Off to Pflugerville (pronounced Fluegerville, for those unaccustomed to german spelling) we go. For crying out loud, some friction electrical thing has knocked the vents for the A/C into some kind of fouled up Purgatory. Yeah, yeah, sitting for two years I know didn't help. The sad thing is, I think it needs an entire new set of switches for the fan, heat, a/c, defrost stuff. I mean, it's eleven years old, and still a good truck, but electrical has been hitting the skids in American cars and trucks for some time now. We struggle along into Eden, where we pick up some other stuff we needed and didn't need, but that's okay too. Get into the truck, crank baby up and the fan and A/C are perfect!! Right down to frost bite cold. Where, in my opinion, all a/c in cars and trucks should be to begin with.
A short spat, something that is going to happen because I can't speak, and the range of motion in my neck sucks mule penis. Shortly we land in Lampassas!
I write furiously as we fuel Baby up. "Look, we are an hour out of Pflugerville, if we crash here, since it's late, it's likely to be less expensive, you can eat, I can feed, we both get a nice hot shower. Get up early in the morning, get into town, find the field, get you fed a HUGE Bfast and get set up". She liked that idea. I am not without my moments. We bot got showered, I shoved a couple of cans of uber disgusting formula in, and realize it's damn near 2200! Taco Bell it is. Liz had a pretty healthy sized meal, and we both enjoyed watching what I consider the most accurate living specimen of a human pear I've ever encountered. He even puffed up a bit when he thought I was dissing him at the soda fountain. Okay, yes, I did, but I was just too tired to give a shit while a walking pear couldn't make up his mind over Root Beer, two kinds of tea, Pepsi, Diet Pepsi, and some other kind of nasty looking poo. So I got my tea and sat down. The hell of this is, I'm out with the one true love, she's doing something with her athletics that so few people do, and she's doing it well, and it's a bitch to have a conversation because I have to write every fucking thing down. Try that, for giggles. Try having a conversation where you must write down your thoughts, beliefs, silly answers and fun questions. You know, the stuff you spend time talking about with your number one heart carrier. I'd be interested in what all y'all think about that. It could be I'm just cryin like a bitch.
Now I can't sleep. I'm a bit jazzed from the drive, and I can't stop from wondering if Liz got enough to eat. Did she hydrate okay? Is she sleeping well? Of course she is, I'm not. Now my trach plugged, minor emergency since my nose is so plugged I can't get a breath, and this evening (friday) my throat is also shut off. Do I panic? Almost, HA! I contemplate hiking across the highway and getting a little Nyquil. I mean, realistically that's not a bad idea. It clears up my head, I get some sleep. Yes, I get sleep, alright. I wake up on October 27 2060, a day after my 100th birthday. Nyquil not only knocks me out, it's gets Baxter as well. They ship me off to MD Anderson, where my insurance expires. Somewhere around my 60th birthday the family somehow gets me declared legally dead, which is okay, I mean, I'm in a Nyquil induced coma, and donate me to MD Anderson for experimental drugs. On my 85th birthday, the find a cure and Baxter and his minions are finally and permanently gone. On my 90th birthday, or there about the moral quandary of using my own genome to regrow parts I'm missing is attempted, and is a rousing success. With new types of electrically induced exercise developed for the first space shot to Mars (also a rousing success. turns out it's made of red sauce that covers a massive meatball. who knew?) I am toned, stronger and faster than I was at my peak strength. Simply by being in a Nyquil induced coma since July 11, 2012. Forty- eight years in my past. None of my kids remember me, although they are still alive. Kinda hip. But I have to say, who wants that? And WTF are you thinking you crazy bastard!! Shit, it's 0100. Damn, only two more hours and I have to be awake to start my daily constitutional. Okay, I'll hit a good two hour power nap. That's six times what a good power nap used to take me, but that's okay. Eyes close, I'm out. I have a short dream about a beer? Okay, that's not so bad. Beats having a dream about being trapped in a VW Micro-bus with 35 rabid or zombie midgets. (yes, that was a real dream from around 3 weeks ago. odd, but funny as hell). Lets see when my alarm is supposed to go off. Hmmmm, it's 0135. Nice a twenty minute power nap after all. I dropped off again and was actually out for close to an hour. It was enough to get me to town for the games. Total sleep on Friday night into Saturday morning: 45 minutes, I dropped off and the alarm did wake me up.
So, here we are. Liz got a decent carb/protein Bfast from Mickey D's (yes, it's possible). I fed, got water for the portable mist makers I got to go with the screen tent and new ice chest, which by the way got cold enough to make your joints ache, and the stuff we put in it get so cold it made my eyes water. So, I'm all set up in my hut, watching Liz throw her first set, relaxing under the cool mist….and dozed off. Seemed like a couple of days, but Liz came back in and it was only half an hour or so. There's one thing I don't do when I go with Liz to the games now, and maybe after the next one or two I can change that. I don't go sit close and watch her. I don't want her to feel….oh geez, what's the word I'm looking for? Not intimidated…self conscious, that's it. I don't know that she would be, but I'm not risking that, not one iota. These are her games now, not mine. She owns them, and should have the right to sort out her technique without wondering what I think of it. Am I certain that's how it would go? Why no, I'm not certain, but I'm also not going to run that chance. I'd like to set up there, where ever "there" is and watch her throw in a Women's Master's World Championship. I think she has that kind of talent. Barring injury or burn out, I think so. She has a woman who is an excellent Highland Athlete that will help coach her along, I need to get a video set up so we can practice, and I can send that off to the wonderful woman that can help her. I need to do this quickly. I've made a couple of new goals for myself. One, to help Liz out as much as I can. She's been the big cahuna here for a long time now, covering my ass and watching over me. She and Dec are taking vacations starting next Sunday, and when they get back, I hope they feel more like themselves before this fucking thing came back and tried to destroy my family, something I can't abide, nor will I let it, if I'm able.
All day, I drift in and out of sleep, they turned the caber in front of me, so that was damn cool. I got to be out and about in the fresh air and a touch of sun. Heat of course, but it didn't break 100, which is nice. Still, seems darn humid to me after all the time I've lived here in the semi arid desert. Oddly enough, I was able to share a pretty decent if not fairly strong hops beer called Victory. The label even looks a bit like the bike logo, which I thought was neat. It's called Victory HopDragon Indian Pale Ale. So, it's got this bite to it, with a little sweet of an ale. Not bad, from what I could get on my tongue with the syringe without choking myself to death. I shared. I went for more ice, water, and beer. I put a quart of Gatorade in me between feedings. As well as 120 ounces of water. I was sweating perhaps more than I thought. I shared again. My bread I baked disappeared, which is good, I hope they liked it. I know some of the folks didn't. Come Kerrville, I'll get a better athlete count and maybe bake six or eight loaves if it goes over well. Okay, back to the fun. Watching Liz, talking to…writing to the folks. Walked around a bit, discovering as I did, that I didn't come well prepared for sharing suds that weren't twist off caps. Two things I never went without back in the day. A decent skinning knife, and a church key bottle/can opener. Back when I was in my twenties, there were still a few imported beers that hadn't gone pull tab yet, or that silly experiment of Coors with the two spots to tap in on the top of the can. Had to have a church key opener, or the skinning knife to get those babies open. Anyway, Liz was slammin the hell out of the heavy shit, I was napping in a mist that kept me soaked most of the day, and napping so much that both of my legs went sleep at one point. I did, though, get so sore that I had to grab a dose of morphine. Kinda burnt my ass a little, since I've not had to take another pain killers other than the fentanyl in over two weeks. Oh well, that's how she bounces sometimes. We got everything torn down, hugs, handshakes, and man hugs and we were off. I felt like I would melt, but I wanted to bring some of that brewski home with, so we stopped one last time in Pflugervill, and hauled balls for Lampassas and home. We split the driving up, I had to stop and piss in Eden. I sat in the truck, I don't know how long, Liz was texting or something. I'd written her earlier, that I'd give myself three strikes. If I felt like I was going to doze off three times during my drive, I'd pull over ASAP and let her drive, no questions asked. I dozed off three times in that parking lot, and Liz drove us home.
Settled in Saturday night. I don't know what time I fell asleep, well after Liz did, I think. I know, though, that I spent nearly all day asleep. Long enough that I almost didn't get the daily drugs, or the all the feedings that I needed. Almost, not quite. Same thing with today, although I did make it to therapy okay. Things change fast with me, man. Four days ago my lymphatic system could build different directions for fluid to drain away. Today, no chance of that, for some reason. If it goes that way Thursday, that will be about it for Lymphedema Therapy. A shame as well. But I knew the time was going to come it's just a sad moment for me. Proving out my theory that Baxter had little minions heading into my lymph glands, since that's where he liked to play so well the last time, and this time as well
So, in a recap. Good God I had a good time, even if I spent so much time sleeping Saturday that I didn't get around as well as I'd liked. I gotta tell ya though. Being out, being able to drive without getting us both killed is a huge plus. In the end, I was totally wasted and washed out, in a bit of pain and swelling up like a toad. If Liz walked in today and said, "There's a game in blah blah, wanna go?", I'd be packing the truck up right now. For what I've got going on, my life is absolutely wonderful. Yeah, it's a bitch to be dying. To watch my upper lip fly out there worse than Joan Rivers, and seeing me waste away to pretty much nothing, in my eyes at least. But it's a bigger world than I think most people see. I have always tried to see it all, and now, I get a chance, with some better eyes than I would have thought.
Thursday, July 10, 2014
Who Thought, Part Two
Yes, there was a post some time back with the "Who Thought" title. It's appropriate this time as well. Who Thought that after all these years, all the nail gnawing, tense, anxious times a few weeks ahead of each CT, all the surgery, all the time in the hospital, and finding out it would be best to be on palliative care, Who Thought that I'd be nervous and the 23rd of July? Why is that even a problem? That's the day after all the biopsies taken, and a PET scan early that morning, the Dr said I was Shit Outta Luck. I mean damn, why am I anxious about this upcoming day? They gave me a year, that's up on the 23rd. I should call him and say, "Ya missed the date, you rat mother fucker!". Well, that's not going to happen. I am that bad a sport, win or lose, that I would do it if it really would matter or make him feel silly. It doesn't and it wouldn't. Thinking people know without being exact, when the doc said a year, Liz and I both knew it wasn't written in a blood or stone. The timeline wasn't carved out of Mt Ararat, and placed in the Arc of The Covenant along with the stone tablets. No, none of those things are going to happen. So what will happen? Well, God willing and the river don't rise, I'll wake up sometime, stick two or three cans of that nasty fucking formula down me, and go about my day like I had good sense. Why? Honestly because it's another day I made it in my life. Quite frankly, as much as I love my family, watching the sunrise, seeing it set, and all the really cool shit I've seen on my trip through the last 53 and some odd years, it's been a great ride, but I just ain't ready to park this particular scooter just yet. I'd like to put straight pipes on Fat Girl, and win the Hooka Hai cross country bike race. Liz would get that money.
See, it burns my ass to get all wound up and potentially make myself sick over a day we've been doing a count down as an object to laugh at and ridicule. It deserves such treatment, after all, it's not been a fun day to have marked on my my mental calendar. I'm lying here in bed typing this damn blog because the 23rd won't leave me the fuck alone. I've succumbed to an inanimate date in time and am letting it partially control how I feel. That's complete and utter booshit. I'm 40/60 good to bad days now. In all honesty, that's better than I expected this close to my due date. I am really doing pretty well for a guy that runs out of gas in 15 or so yards, that blows snot out of a hole in his neck, feeds himself from a bag into a tube that goes into his stomach. Don't be too smug, dick cheese, you ain't dead yet and there isn't a cure to be found under rock or toadstool (mushroom type of toadstool). Top that with the fact I've got some kind of fucking growth on my lower right neck at the junction of neck and trap. Oh joy! The big assed toadstool growing on the side of my neck has given me something to look at and wonder about other than when Baxter is finally going to get enough nerve to put me down….for good.
Liz is going to take some time off in a week or ten days. She damn sure needs it. In fact, so do the younger two kids. Liz is headed to Lost Wages Nevada to get some much needed alone time. I need to get the two younger kids gone at the same time, that way we all have time alone and can sort out any thing rattling around in our collective noggins. We used to get to do that more often than now. I took several bike trips to Highland Games in Kansas and Texas, generally for two to five days. Liz has gone on trips with her friends, and taken some (with kids when they were little) to her folks without me. I still chuckle over being asked by co-wokers "You let her go to Las Vegas with her friends and you're not going?". Good Lord, how insecure do you have to be to say something like that? More importantly, I don't and never have "Let" Liz do anything. We've always said to each other "Go have fun, just tell me where and when". Of course, we both always say "Can I…" which should be "May I…." to save the argument of "Of course you probably can. But are you asking my permission?". There are times it's best not to be a wise ass, I've found. So yes, she gets to go do her things, I do my things, and we do our things too. Well, now my things are pretty much gone since January 22, 2013. (that's the last day I ate anything through my mouth, and I've only barely spoken since then as well. Can't remember what I sounded like anymore). But, Liz needs that time away worse than I need her here. Right now anyway. She's always been there, and this struggle has been much harder on the other five people in my immediate family than it has me. I am certain it's been harder for my siblings and some of my friends as well. You all, though, get a break from me. Siblings and friends alike. Liz and the two younger kids, no. They've not had alone time. They've not had a chance to be out there by themselves, thrown a giant hissy fit, be pissed, cry, laugh, call me names, hate me, then be mad about that (fuck I hope anyway, he giggles nervously), or anything they see fit to do to help themselves out mentally and in the long run physically. I certainly loose ground when I don't have my head in the game. It gets away from me from time to time now. Since it's the largest and heaviest single object on my body any more. It's so dicked up from surgery, that it pulls my head down and forward. Enough so I have this lovely giant knot of neck and spine vertebra at the bottom of my neck, I can't even sit back in a high back chair or car seat without it feeling like someone is hitting it with a hammer. Cie la Vie.
One last fun thing I've found to do to the people that still stare. One day, when I feel the end is near, I'll tell you all which group of adults stares most frequently, and gets bug eyed if I try to speak. Something that now days is limited to once in a while. I'll try, but most days all I get is a bit of wind whistle and nothing else. Okay, on to the fun.
It's been a real bitch for me the last two or three weeks. Loads of water, not enough, just right, makes no difference in the production of crap I aspirate and have to ditch through the trach. I've had to hose down the trach with 10-20 ml of saline two or more times a week. I do it myself now. Liz had been, but it was hard for her to look me in the eye and stay focused while she put water directly into my trachea. If that's what it's like to drown, shoot me if I fall overboard. I'd never make a good spy, they bring out the towel and five gallon bucket of water, my mouth would run like a Bluejay's as in berry time. Sorry, making a short story long. Anyway, I'm filling up the Baby Tuesday, and I feel some eyes burning holes in my back. So I turn around and sure enough, there's some guy staring at me. How did you know for certain, Roc? He might have been looking at nothing, or something beyond you.
True, but I've got a test now, I move sideways. If their eyes follow me and they have to turn to keep me in sight, they're staring. He was staring, mid 30's guy, work duds, goofy look. Now, I've been trying to find a place to hack up the shit in my trach since I forgot my towel at home. I have it now. I start huffing a little to build some explosive pressure, and I'm loud about it. The guy gets kinda nervous looking, like he might have to help if I pass out. Nope, HUGE cough! Sent a nice shot about 12' with a tail wind, landed about 4' from him. He jumped, got scared looking, and drove away. I'm still giggling.
I do NOT do that to kids. If they speak English, I'll have someone ask them for me, if they want to know something. I'll happily write it down, and have whoever is helping me read the answer to them. Adults? Naw, tough cookies. Either come ask, or stop staring. One is fine with me, the other, if I get irritated, will be like a camel you've pissed off……."Watch out! He spits!" (paraphrased from Disney's Aladdin)
Go forth and multiply!!! If you don't want any more children, Go Forth and Practice like Crazy!!!
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