Before I get started on my rant n rave, I wanna give some props out to my PT and Lymphedema Therapists Susan and Barb. While I don't do PT any longer, they give me little tips on things to do that won't irritate my neck and shoulders. The Lymphedema Therapy certainly gives me much better quality of life. I can tell, believe me, when I lose ground on the moving fluid from my head and neck out. I hurt, I get extra slobbery, I can't move well, and my balance is hinky. Through them I have a better quality of life. Something I will take every day over quantity. Much of the reason I didn't do the damn clinical study. Live a few weeks extra, be sick for months. In the immortal words of Rock: "Fuck that shit, Chief".
Okay, here we go. I get asked a lot, and it's an acceptable question, "How ya feel in?". Fact is, it's acceptable because it can change hour to hour. Yesterday, I felt pretty decent until about noon. Then I couldn't keep ahead of drainage or saliva, and in the end threw up several times. And continued to struggle with that the rest of the day. To the point I was chicken to even add a feeding in. Didn't get near the fluid or feed I needed yesterday, but the fear of throwing up overcame my knowledge I needed water and food. That's the shits with me throwing up now. It's not only a mess and embarrassing. It's an intimidating, damn near frightening thing to happen. It fills my sinuses, flies out of my mouth and nose. All of which compounds each other's already existing problems and, if I can't mentally get a grip on it, will continue until I pass out. That's happened once when I was alone. Before Hospice. Before I was told there was nothing they could do with my cancer's return. I didn't tell anyone. No use in causing extra worry when it didn't need to be added in. I've got to the point I can limit the times I puke, so that's a plus and I'll let it go at that.
That's how fast my days can change. It's not always for the worst. Sometimes it's for the better. Some days are bad one minute, and the next I'm shittin in tall cotton. None of that I understand. I've never in my life had such rapid and wide angled physical swings. Well, unless I hurt myself, but that can't be counted because that was the effect of my own actions. Not just watching the damn boob tube and start throwing up, for shit sake.
Most days are pretty average and on a routine that's as flexible as I want it. Boring out the ass, mostly. Wake, do drugs, watch the tube, feed, take Boy to school, twice a week go to therapy, feed, watch the tube, feed, drugs feed. Watching the tube in between. Not much there, really. That's an average day. Little or no swelling, that means little or no pain. On the average days I can do anything I want. Okay, not what I want, but what I'm able to do. Anything. I've cooked. Cleaned. Read. Walked. All that stuff plus. Not bad for an average day. They don't change much, it makes me a little restless. But, here's the kicker on an average day. It makes me restless, but doesn't give me he energy to do something about it. That's a shame. With just a little get up an go I might feel more normal on an average day. Something to sort out for myself. My average days now are about what I would have called a moderately bad day just a year ago. Funny how that changes.
Some days are particularly bad. I wake up hurt. It's a struggle to get my meds and that first feeding in. When I am having therapy on those days it's about all I can do to drive myself there. And although I come away feeling better than when I went in, it's still a struggle to get home and get in the chair. You know, so I can struggle with getting feed and water in. As well as extra pain med if I need it. Bad days I don't care if I get anything accomplished. I'm a damn drag, so some of the days I don't blog anything I'm having a bad day. No two ways about that. Now that I've brought it up, people will worry, but don't. It's not so bad for anyone to worry, but it's bad enough I don't want to drag people down with me to my level of blah. Not that I'm depressed, far from it, but I'm a downer. One word answers, to start. I'm achy or have real pain, so I get short with people. Focus is about out the window except for focusing on not feeling sick or in so much pain (yes, even with drugs) that I can't keep up with a conversation as well. Nothing personal to anyone. Just that some days I can't deal with my own shit, let alone someone else's as well. Those are the days I really have to look after myself, and me alone.
Now, the good days. They come a bit fewer and farther between, but they are wonderful when they do, and they still outweigh the bad days by say, four to one. So that to me is a win. While I may go a week or so without a good day, and only have one bad day, generally the next week I have several good days in a row. Those are the days when the planets all aline correctly and my pain is at a minimum all day. No need for break through pain meds. That's a plus. Those are the days I like to get outside and walk. And even though it wears me out, and makes me ache a lot, the pain goes on its own with in an hour or so. I cough less. Make less saliva. Everything is less. Except for how restless I get. Only now, I have the energy and the get up and go to get up and get. I enjoy going out. On the days that I have good days AND therapy, my pain level may be a three, and by the time we finish it's a zero. That's a true PLUS. That makes me want to go look at stuff. Just to see how much the town is changing in the months I've been down. My God it's amazing the stuff I miss by not being out and about every single day like I was before. Most of it is wonderful and positive. And the citizens of Midland should quit bitching, relearn how to drive, and enjoy the nicest oil field city I've ever lived in. They don't realize that this is one of the best areas to work the oil field I can think of at the moment. So much here. Travel access from interstate and airport. SAM'S in town. A symphony, 20 miles southwest a Shakespeare Theater in the Round. So much. When you look at it, most places are not this well equipped for having oil as their main driving force. Most are very small towns with a 60 plus mile drive to the nearest city with a decent grocery store. Yeah, Kansas is like that. So are most other places.
Good days are a joy. I feel like sharing my time with others. I want to hear about how their days went. I wanna know how their lives are going. In part because I live vicariously through that, and also because it's nice to be part of something larger again. I think everyone needs that once in a while.
As I was telling my therapist Barb, and a couple of other people, as of late it seems like I get a handle on one problem and two more step up. Not in huge ways, more of a "When the hell did that shit start?" kind of moment of recognition. I assume that's going to be the way it is for a while. Probably until I hit Critical Mass and the body lies down that one last time. I don't dwell on it because that give it life and strength. In my mind it does, at least. But it's there. I'd have said "Hell No!" if I'd known that dying was such hard work. Talk about wearing you out. Trying to keep ahead of the little shit is a lot more work than swinging a twenty pound sledge hammer all day. No where near as fun, either. I know why, too. It's a pride thing. I used to take a lot of pride in working some of the late twenty, early thirty age boys into the ground. They get the last laugh now, the dogs. I can't work my way out from under a wet paper towel. Sometimes I'm not sure why I rage against the dying of the light. But I feel driven to do so. Something about that being an old school guy, I guess. I kind of enjoy being the defiant ass that keeps pestering the killer as long as I can. I try and prove that while he is slowly stealing my life, the rat cock sucker hasn't stolen much of me. When he thinks he might have, that's when I like to kick his nuts once or twice. Keeps us both on our toes.
I'm almost sure, as well, that on the good days when I expend a lot of energy enjoying my day, that in the long run I empower the cancer just a touch. I have to recover. I don't just have a bit, catch a second wind and go on. I get exhausted at the end of the day, and for the next three or so days, I'm terribly tired. That gives the cancer a chance to run around unimpeded for a bit. That's okay. Quality over Quantity every time. This is the only life I was given. I never liked sitting on the sidelines watching. Let's all play ball or I'll find something else to do with my time. I truly enjoyed work. Even when I wasn't enjoying THE job, I always enjoyed the WORK. Difference there can be the leadership at the JOB. The WORK didn't change. It required my head out of my ass, and an ability to diagnose and fix problems in several different areas of the fields I worked in. In the one at Notrees, it wasn't just the average daily mechanical problems that's can go on, it was poison gas up to 66,000 parts per million in the air. I didn't gauge tanks. If there was a problem with anything on or near a tank, especially water, that was grab some help and put on the air pack to go check. Loved the work, not always the job.
I'm thinking also about how I was, and how that's changed. My basic self hasn't changed. I like the same things, if I could talk, I'd talk shit with you until we both couldn't breath from laughing. A lot of that hasn't changed. I also think it's somewhat defeatist to compare, but I also see how that's human nature, and even I can't keep from doing it from time to time. So let's run a review, just for shits and giggles.
I wrestled a bit, got hurt in Eighth grade and only wrestled once competitively after that in college. Won three out of four matches. Took second over all in my weight class. Not bad for a kid that hadn't been on a mat in three years. I played city league basketball in Great Bend Ks in sixth grade, and in Elkhart Ks in l991 and 1992, and a couple of times in 1993. 93 I had an excuse not to play. I was just married to Liz and was trying to prove to her that I wasn't a mistake. I played pick up football and the like until 1987. My ex wanted me home on Sunday afternoon since I worked 6 days a week on a well servicing rig and had a new baby. That was okay with me. I was still hitting the gym 5 days a week for a couple hours a night after the kid went down. After Liz and I got married I laid off the gym and stuff for a couple of years. Worked hard at my job, so I stayed in pretty decent shape. Then after Dec was born, I had to hit the gym again. I was turning into a fat old man. Couldn't let that happen. I got strong, probably stronger than anytime in my life. I know it was in June, July, and August of 2008. Once a month I benched, squatted and dead lifted 400 lbs. Piss poor squat, but I hated leg work. My oldest daughter loves leg work. She's gonna be the athlete. All the while, in between and the like. I played a little soft ball with Liz radiology team at the hospital. At the time it was hard for them to field an entire softball team, so the hospital let others in. I'm glad they did, I had fun. But, I had to really watch myself. I'm such a piss poor loser, that I can make a fun time go right down the shitter. I pulled myself from that. I could see it starting to happen. Everyone else is laughing and having fun, I'd be in my own head thinking "We are fucking losing!!!! Get your mind right!!!!". They did have their minds right, they were enjoying one another and the company. My problem, not theirs.
Up until this season I threw Highland Games. Heavy Athletes. Without a doubt, the absolutely most challenging, frustrating, exhilarating athletic events I've ever done in my life. Hard, hard work. The guys I know that are the most successful work at it, a lot. I didn't. The reason being, and this is fucked up, when I start training for something and start seeing results that I like, I'm not satisfied. I push, I get angry with myself. Not at the other athletes, this isn't their fault, it's mine. My timing is off. I feel weak, I this, I that, until it becomes such a burden to even make the attempt, I simply have to stop or risk losing my family and friends. You laugh, it's no shit. Liz will back me up on that.
So, what I did was this. I'd work a little on technique so I didn't just go out blind and stupid on the field. I'd throw my best, I'd laugh, I'd have fun. I hope the guys throwing with me had fun when I was around. I stood in awe of the superior athletes, cheered the guys who made PR's and advanced. That's what I did for myself, and I hope that helped some of the folks I threw with. I made damn good friends on those fields. Left a little bit of me on every one of the fields. Blood, sweat, cheers. All of it. I miss it....a lot. Since I've been ill, the folks in the games have managed to make my eyes wet more often than much of anything else. Most times I don't let my eyes get wet, I can't help it with those folks. I'll miss them.
The same thing with the guys I work with at SAU. I miss them now. They got to see me at my absolute best. When I was truly at the top of my game. From 1993 to 97, the guys at Notrees got a glimpse of that, but I didn't have the opportunity to prove my own hype like I did at SAU. I relish and truly loved the chance to show people I honestly knew what the fuck I was talking about, and it wasn't all just bull shit.
All in all, my days are no where near what they were, but fuck, I'm dying. I've had big chunks of me cut out and thrown away, and other big chunks of me that are trying to kill my ass as I type this. That's all okay. Because these are MY days. They aren't cancer days. They are not dying days. They are MINE. Good, bad, average, these are me. That means in a sense, they are all good days. I'm still here. Yeah, it's difficult, and it's hard on the the family, rough on my friends, and I wish I could fix that, but I can't. But, all that being said, it's still me.
I wasn't always the open book that I am now. I carried myself awfully close to the vest. Wasn't anyone's business what I was doing or why. that was part of me at that time. I was always honest with folks, but I didn't often tell them everything. If it wasn't pertinent I didn't open my mouth.
That's changed. Everything is pertinent now. If not for alleviating some fear someone may have about finding their own Terminal Velocity, and eventual Critical Mass, then helping folks understand the gamut of things that go on, so they can help others if they need to, or themselves if that time comes.
I told a buddy here in town the other day that I'm kind of glad it's me that's going through this. He looked at me like I was fucking crazy. "No," I said, "listen. I know I can do this. I can fight this as hard and long as my body lets m. Somewhere there is someone who can't, who'd truly suffer. Mentally and physically. They'd be afraid, they'd make the people around them afraid, too. I'll do it for those folks. But just this one time, dammit, I didn't take them to fucking raise." We both laughed
Book of Rock: I'll help you, but I ain't your fucking mommy. Quite frankly, most of the people I meet I could care less if they succeed or fail. Friends, all I wanna see is them succeed and be more than they thought they could be and achieve the most of everything they want. The rest of the refuse and whiners? Suck it, you aren't worth my time
Boy, that sounded harsh. I've got dozens of friends, more than I realized, but on the scale with the number of people I meet, they are a small fraction. It looks like a lie, but I don't friend up easily. Most of these folks I've known over thirty years. In some cases we've met again down the line, and wondered why the hell we didn't hang out more in the past. Those are fun. But truly, there are far more horse's asses than horses, and I could care less how well you do with your life, if your approach in private life is anything like your approach to the public. You're assholes, get over yourself.
Let's do it right, kids, we've only got one shot at it, and my time is getting thin