Good lord I got pissed off yesterday. At a couple of people in particular, and at myself for being pissed, and several little things that probably shouldn't have pissed me off but did anyway. I'm not all happiness and sunshine, I've got a temper like you would not believe. There's no telling what will open the door to Mr. Temper's room either. Once he's out, he's hard to put back in where he belongs. That's my fault when he gets out. I know enough to let most things slide off so I'm not going sky high over every little thing. Things just kept rattling Mr Temper's cage yesterday until they shook the lock off. Inconsiderate people started it at 5 AM. I go to sit and listen while my buds have a cuppa Joe and shoot the breeze. It's a nice change and I'm not so self conscious about my inability to be well understood. While walking across the parking lot, some douche nozzle comes screaming in, lays on his horn and gives me the finger. I stop right where I am in front of him and stare. I can't tell him what a complete and utter asshole he is, and if he'd like to step out of his POS Jeep Wrangler we could discuss etiquette up close and personal. For starters he'd not understand me, and the other thing is I don't have the upper body mobility to drag his horse's ass out of the Jeep for a talk. So I rely on irritation. It worked I believe. I get in and sit down. Three people in line, some ass is taking coffee orders over the phone, and holding the line up. Because his and his buddy's coffee are more important than stepping out of line until they sort out what they want.
On Facebook we had a little discussion about my religious beliefs. Really, it's no one's business but me and my maker what I believe, and I don't like to discuss it in public. I offered to talk to anyone that wanted to know in a Private Message. That discussion got a little rowdy and there really was no need for that. Granted, I opened it up for questions about anything with the caveat I could say "None of your damn business". Which I used, one time, and then offered a private discussion. It wasn't a mean discussion, just unnecessary. I don't give a rat's shiny ass what a person believes or how they go about showing it. That's their personal choice and I respect that, I'll DEFEND that, so why argue it? Got me.
I've kept Mr Temper tied down for a while now. And maybe it's time it got turned loose for just a bit. I got some things off my chest that had been there for a long time. And while I was chapped at myself for the way I did it, I feel better for having said what I did. Was it kind? Oh God no it wasn't. It did need said though after 4 years of pussy footing around with it, it was time. I'm not trying to make an excuse for anything because it's my behavior. I see and hear enough excuse making to run me the rest of my life, plus some. It seems like it's always someone else to blame for things that are going on in a person's life. I can honestly say, the reason I never made field foreman was because of my mouth. No one's fault but my own. I had a foreman that just honestly didn't like me, he told people he didn't, but he was an ass. I told him so, knowing full well that even if a promotion rolled along I was going to get looked over just so he could keep me under his thumb. I never laid blame to him for that, it was my own doing.
So, Mr Temper got to spend some time out playing yesterday. What was the total gain in that? No a damn thing. Zero. Zip. Nada. It wasn't a good solid reason to be angry, not like seeing someone abuse my or someone else's kid, or touch me in a threatening manner, or try to harm my wife or friends. Nope, none of that, it was silly shit that should have been let go and blown off. I try to pride myself in not dwelling on stuff, or letting it build up into blown over the top proportions. I missed doing that yesterday. If anyone is looking for an apology, that isn't happening either, but it was silly for me to twist off like that. It's a short coming on my part. Mr Temper is the reason I never liked to fight. I didn't know when to stop. Mr Temper has cost me a couple of friends down the line. My loss, for foolish behavior. My lovely wife Liz is about the only person that can scare Mr Temper back into his box, bless her heart. She's tougher than I am. She hates Mr Temper more than I do. Mr Temper is an ass, he helps me do stupid shit.
On the other hand, Mr Temper helps me deal with some of the stuff I'm going through right now. He's mad as hell at Baxter, so he fights Baxter for me. He won't let Hospice tell me what's best for me, when they've done nothing but read files....maybe. He's with me when the Dr's act a bit indignant that I won't do a Clinical Trial. He asks them "Would you?", but gets no answer, other than a walk around the bushes. He does give me an edge at times, when I let just parts of him come slinking out when I need that boost.
So, today's lesson? Damned if I know. I would guess it's not to let the little things drive you to losing your temper. If it's going to be lost, do it for the right reasons, not over little stuff. Does this let the person I was most angry at off the hook? No it does not. I just should have been more diplomatic. Short coming on my part. One should try and temper honesty with compassion. It's good to be honest with yourself and everyone else, but there should be a bit of compassion in there as well. You draw more flies with honey, as the old saying goes. To add to the rest of that timeless saw: Use vinegar and generally all you attract are the douche bags
Thursday, August 22, 2013
Wednesday, August 21, 2013
Questions? Anyone? Anyone?
So, what do people want to know about me or my situation? What questions are off limits?
Well, let's start with that. Nothing is off limits unless I say something like, "Yeah, like that's any of your damn business". My terms, my limits. If anyone gets put off by a question, I'd say grow some thicker skin. The only way to understand what I'm going through, and what each of us may go through, is to ask. Knowledge is power, and that's no bullshit. For years we heard teachers tell us that there is no stupid question, no matter how trivial a person may think the question sounds in their own head. Ask, be bold. As I say, the worst you'll get is a none of your business answer. I'll answer all of them as honestly as I can. My terms, I get to decide how much detail I go into with each answer. Some will be short because I just don't understand the science. I'm oil field trash, not a doctor. Others will be short because it's something I want to keep for myself. I have to have something that's mine. I dedicated the blog to being open, as open as I can anyway, so people get the chance to learn something. Whether it's how not to be afraid of the future (frankly, none of us get out alive) or just to put a new eye on what's going on around us. I always felt like I was a keen observer of my surroundings. I didn't miss much of the pretty stuff, or the ugly either. But I've also slowed down my looking a bit now, so everything takes on a different tone. I live in some butt ugly country. Not much more than mesquite, caliche, and some scrub grass, but even here has it's moments. Always has had, I just see more of them now. That was my whole point here. To give folk a chance to see what I am, and maybe see it when they aren't so pressed for time. Dying is a piss poor way to discover the nice stuff along the road, believe me. I've also said I'd be open about how I feel as this goes along. I intend to keep that promise, until I just can't any longer. That may be ugly as sin as we steam along here. I intend to put in everything I can, no matter how crappy and bad it gets. That's the point of being honest, sometimes it hurts a little.
Okay, onto a question that popped up yesterday on the Facebook Group site. "You're not doing the Clinical Study even if it might help others?"
That's right, I'm not. I sort of short sheeted that answer yesterday, so I'll try and elaborate on why I came to that conclusion a couple of weeks ago, and how I'd already made up my mind not to do Chemo, before seeing the Oncologist in Midland.
So here goes nothing. Back when I got the biopsy in late October, I'd told my boss that if the cancer came back it was going to be mad and worse than the first time. Being right isn't all it's cracked up to be. I knew then it was going to be a difficult row to hoe, but I was willing to take the risk and see what was going to happen and how we were going to fight it. Lots of surgery, cutting out big chunks of me. That left me, after some of the muscle flap died and required another two surgeries to fix, unable to swallow or speak. Without a pectoral muscle and missing a goodly chunk of one quadricep. I didn't get PT orders in what I consider a timely fashion, so a lot of my upper body weakened out and atrophied. No fun. They collected samples of all the cancerous tissue, plus the dead quad muscle, as well as having every page of doctor files from the previous bout. A lot of information for a research hospital to use. Including growth rate in me, which was awfully fast. Both times it was very fast, and I see no reason this one won't be the same. I have hell with chemo. Bad side effect? Hell yes, dish that shit up because I'll have some, no doubt about it. Any more radiation and that will kill me faster than the cancer. In short, misery and death, right? My surgeon, at our first meeting, told me this was the shot. If it came back after that, there wasn't anything left to do. I figured that, just taking a wild guess at the mechanics of it all, and decided to give it a shot. We kill the cancer this time, it won't have a place to hide. Or so I thought. Cut away, surgeon, let us be done with the foul disease, repair me, and let's all have a big hug to a successful treatment. Almost worked too. Clear for 5 months
So, they find it again on my first reconstructive surgery. I knew by the look on the Doc and his assistants face something was up and it wasn't good. Fine. We'll see. A week later I see my new surgeon, he mentions Palliative care, throws my loving wife into tears. Bad. He and I discuss probable time. He says about a year, goes into a bit of what to look forward to (that's a taboo question, I will not answer that at all) and hooks me up with the MDA folks for the next week, along with a chemo consult. We'd already discussed that it wasn't a cure, just an extension, so I was leaning toward no chemo then. After another 2 weeks, and the palliative care consult (the doctor was very cute, and tiny) we had a chemo consult. You notice I keep saying "we". That's the wife and I, she's in this with me.
MDA chemo Doc tells me the protocol they want to use is going to be very strong, but I'm strong enough to stand it. I ask cure, she says no...Strike on. She brings up Clinical Study, a bit shy on details other than it's going to be way stronger and more harsh than the chemo treatment. Cure? Nope, just to see how my cancer reacts to the treatment. Sooooooo, really, really sick and miserable for zero gain on the whip end. I told her "NO" right away. I say I'll think about on cycle of chemo, if I can do it at home where I can be comfortable.
Fast forward to Midland one week. I'm in wanting to see if MDA has set up the protocol with my doctor. The orders came in while I was waiting. They take some blood, go over the CT report that came with the orders and ask if I can wait to see the doc. Thirty minutes or so later he's telling me about the treatment, it sounds bad to me already. I ask if my wife can come in and hear what he has to say the next day. I've already made my mind up, but Liz deserves to hear what I heard, so she can understand why I said no to the Chemo. She listens, cries a bit, and agrees with me. No chemo. I know this makes her weepy and stuff all day, and I hate that. For me, it's like lifting a bus off my shoulders. Hearing there wasn't a cure was like having a tank taken off, this was the last big weight and I was glad to be free of it.
So, here's why no clinical study and no chemo. They've got chunks of me that I signed off for them to have and study. They have dozens of blood tests, CT's and PET scans to go over. They have growth rate. The only thing they don't have is me as a guinea pig.
My life on my terms, my death on my terms. I've chosen quality over quantity. Without being able to speak will or swallow, or train to throw, or really ride the bike, my quality of life isn't what it once was. Fine, I accept that as part of the war I am continuing to put up against that which will kill my body. And I figure faster than within a year. MD Anderson is a great hospital, and they do wonderful work in curing cancer. If surgery hadn't been part of the equation, I'd jumped on a Clinical Trial so fast it'd make your head spin. As things stand now, no way, no how. I'm still doing speech swallow therapy, so hopefully I'll be more readily understood when the time comes I can't speak at all. I do lymphedema therapy, because that helps everything else as well as my comfort level.
So now there's a bit better explanation, I needed the extra room Facebook can give, but not as well as this forum. So, ask away. I'm open. And as I've said, if the questions make you woozy or upset, put that extra layer of skin on. Hell, I'm the one being asked, no one else is
Well, let's start with that. Nothing is off limits unless I say something like, "Yeah, like that's any of your damn business". My terms, my limits. If anyone gets put off by a question, I'd say grow some thicker skin. The only way to understand what I'm going through, and what each of us may go through, is to ask. Knowledge is power, and that's no bullshit. For years we heard teachers tell us that there is no stupid question, no matter how trivial a person may think the question sounds in their own head. Ask, be bold. As I say, the worst you'll get is a none of your business answer. I'll answer all of them as honestly as I can. My terms, I get to decide how much detail I go into with each answer. Some will be short because I just don't understand the science. I'm oil field trash, not a doctor. Others will be short because it's something I want to keep for myself. I have to have something that's mine. I dedicated the blog to being open, as open as I can anyway, so people get the chance to learn something. Whether it's how not to be afraid of the future (frankly, none of us get out alive) or just to put a new eye on what's going on around us. I always felt like I was a keen observer of my surroundings. I didn't miss much of the pretty stuff, or the ugly either. But I've also slowed down my looking a bit now, so everything takes on a different tone. I live in some butt ugly country. Not much more than mesquite, caliche, and some scrub grass, but even here has it's moments. Always has had, I just see more of them now. That was my whole point here. To give folk a chance to see what I am, and maybe see it when they aren't so pressed for time. Dying is a piss poor way to discover the nice stuff along the road, believe me. I've also said I'd be open about how I feel as this goes along. I intend to keep that promise, until I just can't any longer. That may be ugly as sin as we steam along here. I intend to put in everything I can, no matter how crappy and bad it gets. That's the point of being honest, sometimes it hurts a little.
Okay, onto a question that popped up yesterday on the Facebook Group site. "You're not doing the Clinical Study even if it might help others?"
That's right, I'm not. I sort of short sheeted that answer yesterday, so I'll try and elaborate on why I came to that conclusion a couple of weeks ago, and how I'd already made up my mind not to do Chemo, before seeing the Oncologist in Midland.
So here goes nothing. Back when I got the biopsy in late October, I'd told my boss that if the cancer came back it was going to be mad and worse than the first time. Being right isn't all it's cracked up to be. I knew then it was going to be a difficult row to hoe, but I was willing to take the risk and see what was going to happen and how we were going to fight it. Lots of surgery, cutting out big chunks of me. That left me, after some of the muscle flap died and required another two surgeries to fix, unable to swallow or speak. Without a pectoral muscle and missing a goodly chunk of one quadricep. I didn't get PT orders in what I consider a timely fashion, so a lot of my upper body weakened out and atrophied. No fun. They collected samples of all the cancerous tissue, plus the dead quad muscle, as well as having every page of doctor files from the previous bout. A lot of information for a research hospital to use. Including growth rate in me, which was awfully fast. Both times it was very fast, and I see no reason this one won't be the same. I have hell with chemo. Bad side effect? Hell yes, dish that shit up because I'll have some, no doubt about it. Any more radiation and that will kill me faster than the cancer. In short, misery and death, right? My surgeon, at our first meeting, told me this was the shot. If it came back after that, there wasn't anything left to do. I figured that, just taking a wild guess at the mechanics of it all, and decided to give it a shot. We kill the cancer this time, it won't have a place to hide. Or so I thought. Cut away, surgeon, let us be done with the foul disease, repair me, and let's all have a big hug to a successful treatment. Almost worked too. Clear for 5 months
So, they find it again on my first reconstructive surgery. I knew by the look on the Doc and his assistants face something was up and it wasn't good. Fine. We'll see. A week later I see my new surgeon, he mentions Palliative care, throws my loving wife into tears. Bad. He and I discuss probable time. He says about a year, goes into a bit of what to look forward to (that's a taboo question, I will not answer that at all) and hooks me up with the MDA folks for the next week, along with a chemo consult. We'd already discussed that it wasn't a cure, just an extension, so I was leaning toward no chemo then. After another 2 weeks, and the palliative care consult (the doctor was very cute, and tiny) we had a chemo consult. You notice I keep saying "we". That's the wife and I, she's in this with me.
MDA chemo Doc tells me the protocol they want to use is going to be very strong, but I'm strong enough to stand it. I ask cure, she says no...Strike on. She brings up Clinical Study, a bit shy on details other than it's going to be way stronger and more harsh than the chemo treatment. Cure? Nope, just to see how my cancer reacts to the treatment. Sooooooo, really, really sick and miserable for zero gain on the whip end. I told her "NO" right away. I say I'll think about on cycle of chemo, if I can do it at home where I can be comfortable.
Fast forward to Midland one week. I'm in wanting to see if MDA has set up the protocol with my doctor. The orders came in while I was waiting. They take some blood, go over the CT report that came with the orders and ask if I can wait to see the doc. Thirty minutes or so later he's telling me about the treatment, it sounds bad to me already. I ask if my wife can come in and hear what he has to say the next day. I've already made my mind up, but Liz deserves to hear what I heard, so she can understand why I said no to the Chemo. She listens, cries a bit, and agrees with me. No chemo. I know this makes her weepy and stuff all day, and I hate that. For me, it's like lifting a bus off my shoulders. Hearing there wasn't a cure was like having a tank taken off, this was the last big weight and I was glad to be free of it.
So, here's why no clinical study and no chemo. They've got chunks of me that I signed off for them to have and study. They have dozens of blood tests, CT's and PET scans to go over. They have growth rate. The only thing they don't have is me as a guinea pig.
My life on my terms, my death on my terms. I've chosen quality over quantity. Without being able to speak will or swallow, or train to throw, or really ride the bike, my quality of life isn't what it once was. Fine, I accept that as part of the war I am continuing to put up against that which will kill my body. And I figure faster than within a year. MD Anderson is a great hospital, and they do wonderful work in curing cancer. If surgery hadn't been part of the equation, I'd jumped on a Clinical Trial so fast it'd make your head spin. As things stand now, no way, no how. I'm still doing speech swallow therapy, so hopefully I'll be more readily understood when the time comes I can't speak at all. I do lymphedema therapy, because that helps everything else as well as my comfort level.
So now there's a bit better explanation, I needed the extra room Facebook can give, but not as well as this forum. So, ask away. I'm open. And as I've said, if the questions make you woozy or upset, put that extra layer of skin on. Hell, I'm the one being asked, no one else is
Tuesday, August 20, 2013
Why?
A lot of people are asking "Why? Why do good people have to die?". It's part of life is why. Are some folks taken way to early? Absolutely, and not including myself in that lot. As humans we are a frail lot. No other baby requires the time a human baby does to be able to care for itself. In fact, some never learn how to take care of themselves. We are susceptible to a plethora of illness that 100 years ago would have killed most of us. We aren't as strong as most of the big mammals in the animal kingdom. Our advantage lies in our larger brain pan and it's ability to reason and think in abstract terms. It's what brings us to "Why?". Sometimes there just isn't an answer other than "Well, shit happens don't it?". Because it does. Shit just happens. No matter how we try to rationalize it, or explain it, it just happens. Is it part of a big master plan for each of us individually? It very well could be. I'm a believer in nothing happening without a reason. Does that mean there is a higher power? It certainly does in my mind. If that's God that's fine. If it's just a creator of action that must play itself out, that's fine as well. None of what we do is without reason, nor does it never have no effect. Our hope is that we do a bit better and leave the place better than when we got here. Our little mud ball out here in the universe is different. Any one of a million things just doesn't fall into place exactly right, life doesn't exist here. A bit closer to the sun, it's too hot, a bit farther out, it's too cold. Every meteor strike, every ice age, every warm period, happened for the betterment of the planet and the life that occupies it. That's not random. Random leaves too many variables that can go wrong.
"Why" can also lead to "What if?". What if deals in hypotheticals that can't be proven. "What if I'd been able to be a Marine?" Well, I might not have done the work I do, met the people I have, had the kids I do, or have this blog. Or not. It's the same as asking yourself "What if I'd done X instead of Y?". You'd not be who you are now. Something would have changed and in turn, that would change your outlook on life and work. There are folks thinking "Oh, no, I'd still be the same.". No, no you wouldn't. You'd have altered something basic in your life. Something so tiny you may not know it at first, but it will have an overall impact on who you are right now. It can't be helped. Our experiences make us who we are. I could have changed majors when I was drinking my way out of college (or just stayed at the dorm and studied, but that was no fun) and gone onto being a history instructor. I might have even been good at it, but I'd not be who I am sitting here typing. My entire outlook on life and work would be altered. I know a lot of petroleum engineers. We talk field work, wells and fun stuff like that. I've mentioned before that I could go back to school and learn exactly what they know right out the box. But I've done work and seen things they'll never see, just because I was where I was at the right time. I also listened and learned things from them. Not being so dead set in exactly what I had done over riding new information let me learn a lot. As well as being able to show the engineers an easy, safer way to work. It was a win/win. I'd never gotten there if I'd lived by "What If?". Do I do that? Hell yes I wonder "What if", I'm human. We all wonder about changing things. I don't dwell on it. I think it's a losing proposition. An unprovable scenario. I think "What if" can paralyze your ability to move forward nearly as badly as, and in some cases worse, fearing the unknown
The worse thing about "Why" and "What if" is they can keep you from trying. "What if I fail?". Yeah, what if? Big deal, is it worse to fail or not to try at all? Not to try is far worse. "What if I he/she doesn't feel the same way about me I do them?". Don't ask, or lay your heart out there, you'll never be hurt. You'll also never find the miracle of a solid love. "Why did that happen?". Who knows? Did you learn something from it? If you did it wasn't a total wash out then, was it?
There are so many things that can hold us back from being happy or ourselves. I tried to avoid those, and for the most part I've lived my life on my terms. I spent a lot of time raging against the darkness in spite of not lighting the candle. I learned from those years. You really can draw more with honey than vinegar, it just took me a while to figure that out. I can look back and honestly say I wouldn't change a thing. All the stuff I've done in the past have gone toward my here and now and my future. Everyone can do that. Don't dwell on the what if or why end. Look at it as the lesson you didn't know you were learning. Our ability to look back and say "This is where I made a mistake, I don't have to do that again" is what separates us from the animal kingdom.
I just looked at the biggest "What if" of my life. What if I do the chemo and the clinical study? Well, for certain I was going to be incredibly sick and miserable, and the gain in life would be zero to a little. I decided to say no to those, knowing full well I'm going to die a bit sooner. Yesterday a guy asked me
"What if it would have worked?". I suppose I might have lived a long life. Or been clear 4.5 years, or 5 months and it might come back. I don't dwell on that because my decision was made. I feel it was the correct decision for me. Do you all see how defeatist "Why?" and "What if?" are now? "Why" because in a lot of cases there just isn't an answer. At least not one we can see right away. There's a lot of reasons we can't see right away, and may never see. But somewhere a difference was made in something. "What If?", because it causes us to question things we can't correct. What if deals in the past. It's okay to think "What if", then play out the different scenarios, but in the long run what has that done? Made some great personal fiction for us is what. You can't move yourself forward if you're so worried about things you can't control that they affect your everyday thought process. It's okay to think "what if I do this, what are the consequences?", that's making a plan. It' not okay to constantly go back and worry about "what if I'd done this instead?". That's a loser, you probably already know that answer. The fact that you made a decision and went through with it, right, wrong or indifferent is a major point in your life. It's teaching you how to deal with the things you do. Don't ruin the good lessons by worrying about "What If".
Long and rambling. It's becoming a trade mark.
Carpe Omnia. Might as well, as long as Why and What If stay out of your way
"Why" can also lead to "What if?". What if deals in hypotheticals that can't be proven. "What if I'd been able to be a Marine?" Well, I might not have done the work I do, met the people I have, had the kids I do, or have this blog. Or not. It's the same as asking yourself "What if I'd done X instead of Y?". You'd not be who you are now. Something would have changed and in turn, that would change your outlook on life and work. There are folks thinking "Oh, no, I'd still be the same.". No, no you wouldn't. You'd have altered something basic in your life. Something so tiny you may not know it at first, but it will have an overall impact on who you are right now. It can't be helped. Our experiences make us who we are. I could have changed majors when I was drinking my way out of college (or just stayed at the dorm and studied, but that was no fun) and gone onto being a history instructor. I might have even been good at it, but I'd not be who I am sitting here typing. My entire outlook on life and work would be altered. I know a lot of petroleum engineers. We talk field work, wells and fun stuff like that. I've mentioned before that I could go back to school and learn exactly what they know right out the box. But I've done work and seen things they'll never see, just because I was where I was at the right time. I also listened and learned things from them. Not being so dead set in exactly what I had done over riding new information let me learn a lot. As well as being able to show the engineers an easy, safer way to work. It was a win/win. I'd never gotten there if I'd lived by "What If?". Do I do that? Hell yes I wonder "What if", I'm human. We all wonder about changing things. I don't dwell on it. I think it's a losing proposition. An unprovable scenario. I think "What if" can paralyze your ability to move forward nearly as badly as, and in some cases worse, fearing the unknown
The worse thing about "Why" and "What if" is they can keep you from trying. "What if I fail?". Yeah, what if? Big deal, is it worse to fail or not to try at all? Not to try is far worse. "What if I he/she doesn't feel the same way about me I do them?". Don't ask, or lay your heart out there, you'll never be hurt. You'll also never find the miracle of a solid love. "Why did that happen?". Who knows? Did you learn something from it? If you did it wasn't a total wash out then, was it?
There are so many things that can hold us back from being happy or ourselves. I tried to avoid those, and for the most part I've lived my life on my terms. I spent a lot of time raging against the darkness in spite of not lighting the candle. I learned from those years. You really can draw more with honey than vinegar, it just took me a while to figure that out. I can look back and honestly say I wouldn't change a thing. All the stuff I've done in the past have gone toward my here and now and my future. Everyone can do that. Don't dwell on the what if or why end. Look at it as the lesson you didn't know you were learning. Our ability to look back and say "This is where I made a mistake, I don't have to do that again" is what separates us from the animal kingdom.
I just looked at the biggest "What if" of my life. What if I do the chemo and the clinical study? Well, for certain I was going to be incredibly sick and miserable, and the gain in life would be zero to a little. I decided to say no to those, knowing full well I'm going to die a bit sooner. Yesterday a guy asked me
"What if it would have worked?". I suppose I might have lived a long life. Or been clear 4.5 years, or 5 months and it might come back. I don't dwell on that because my decision was made. I feel it was the correct decision for me. Do you all see how defeatist "Why?" and "What if?" are now? "Why" because in a lot of cases there just isn't an answer. At least not one we can see right away. There's a lot of reasons we can't see right away, and may never see. But somewhere a difference was made in something. "What If?", because it causes us to question things we can't correct. What if deals in the past. It's okay to think "What if", then play out the different scenarios, but in the long run what has that done? Made some great personal fiction for us is what. You can't move yourself forward if you're so worried about things you can't control that they affect your everyday thought process. It's okay to think "what if I do this, what are the consequences?", that's making a plan. It' not okay to constantly go back and worry about "what if I'd done this instead?". That's a loser, you probably already know that answer. The fact that you made a decision and went through with it, right, wrong or indifferent is a major point in your life. It's teaching you how to deal with the things you do. Don't ruin the good lessons by worrying about "What If".
Long and rambling. It's becoming a trade mark.
Carpe Omnia. Might as well, as long as Why and What If stay out of your way
Monday, August 19, 2013
Acceptance
This weekend I was asked if I'd accepted the diagnosis. I replied, yes I have.
Accepting the diagnosis by no means saying I like it, or won't fight it with what I have. What it means is I've come to terms with the oncoming end of my life. Do I like that? Well hell no, I don't like that, but that doesn't mean I'm not at peace with this part of my life. My cancer is rapid growth stuff. When even the Oncologist looks at CT's taken before, after, and immediately before surgery and says "Wow, that grows really fast", maybe it's time to say, "Wow, my cancer grows really fast". I know it does. I can sort of tell why it's having a growth spurt. I get tired, cranky, and achy. Like this morning. Well, this morning could be lag from the fun I had at Kerrville. That being the case, it's no big deal, because that's an ache I'd put up with every day if it meant I'd had fun the weekend before.
Acceptance means that I'm not willing to spend what time I have left, hooked up to a PICC line having poison pumped into me once a week for God knows how long. It means that I do not want to spend my time trying to keep from vomiting. That creates an entirely different set of problems than simple Chemo yakking does. It means that I'd rather be as lucid as possible. It means that what time I have left, be it a years, way less or maybe more, isn't going to be spent wondering if it slowed down the cancer enough to squeeze in an extra 2-3 weeks. No, that's not doing it on my terms. That's letting someone who doesn't have a personal interest vested in me decide how my life is going to proceed. The clinical trial was going to be more harsh than the standard Chemo. Bless their hearts at MD Anderson, because I know they are looking down range and trying to help other people after I'm gone. I'm thrilled they do that, by the way. They have samples of my cancer tumors and tissue. They have a sample of the muscle that died in my mouth. That's enough of Rock Guinea Pig, they don't need me to be sick for them at all, not if it's not going to cure me, and I as told it would not.
Acceptance means that I see things a bit differently. There are places I probably won't see now. Somewhere down the line there are people I'm going to see for the last time. I can taste a bit of the foods I like, but I won't be eating them again. People's smiles, voices, how they smell, the feel or their hands when we greet each other. Those are things that, one day, will be the last time I experience that particular person. Jesus, sounds like I'm being a drag, right? I'm not. These are the things I took for granted when I thought I was immortal after beating Baxter down the first time. Not that I didn't cherish my friendship with everyone, that goes without saying. But I took a lot of things for granted. I don't do that now. How often do we really just look and soak in what we are seeing? How the flats turn into the hills? How the hills are wooded differently in different areas? I can tell you when we are getting close to West Texas just by the difference in the Mesquite and pasture land, even if I've been asleep and wake up not knowing where we are exactly. Everyone's hands feel different when you shake them, because it's a person, not just their hand. Pay attention next time you grab mitts with more than a couple of people, it's amazing what you can tell from just grabbing a hand and shaking it. I started noticing that more lately. I think I'm making an image of that person that won't be lost...ever. I'll take some of everyone with me, where ever it is I'm going on the next leg of the journey. I'll have dozens of people with me, how can that be a bad thing?
Acceptance makes it easier to get everything Immortal Rock should have gotten done, finished in a timely manner. Put this off, put that off, the next thing you know none of the stuff you wanted done is even close to finished and you're out of time. Me? Hell, I'm getting that done. When the time comes to shake these mortal coils, the only thing the family will have to do is be with each other. No mad running around getting stuff finished for my depot stop. Except maybe the party stuff. That'll have to be set up later. Although we are having a BBQ sometime in November, hopefully while I'm still able and feel up to it. I find myself not planning too far out right now. More my style actually, to begin with. It's giving me a chance to reconnect with some folks I hadn't seen or talked to in years. Not to lay a guilt trip on them or myself, but to let them know that in some way they made a difference in my life. That's a good thing for me to do right now, and I hope it's a good thing for those people to know as well. Acceptance also means it's okay to admit I'm tired and I hurt a lot of the time. Before either round with cancer I had a lot of aches from things I did when I between 4 and 47. I had aches and minor arthritis from broken bones. Pulled muscles and over exerted everything. It was something I had and learned to live with. Lately I get asked a lot "What's your pain level?". It constantly ran a 2-3. So compared to what? A good day? Then a 5 or 6 is tolerable. And I hate to admit it when I'm really hurting. Shit, I limp a bit because I'm missing part of a quad, so what's a little pain? The Palliative Care Dr at MDA said, "It matters because you deserve to be as comfortable as you can". That struck home for some reason. Okay, that works for me, I accept that. And anyone at Kerrville can attest that I got as comfortable as I could be on that day.
Acceptance also means that I'm not going to keep telling everyone to suck it up. It gives me the peace of mind to let everyone that wants to be upset with my current run from Terminal Velocity to Critical Mass, be upset. Do I like to see my loved ones cry? I can be a mean old Son of a Bitch at times, but I'm not heartless. It really upsets me. But, acceptable for me now because the folks I love need to have a time to be upset, leak a bit, be mad, all of that. They can even be mad at me for behaving like I was Immortal Rock and doing as I damn well pleased because I wasn't ever gonna die. Surprise surprise surprise Sgt. Carter, looks like I might after all. I didn't used to like the fuss. My wife thinks she can't cry in front of me, I think, so she can look strong for me. WRONG Lizzy, you can. You've always been my strength and my rock, nothing is gonna change that. It also means I've given up a chunk of myself. I was always loathe to accept help, let alone ask for it. Stubborn Rock never liked having to have help. Stubborn Rock often took longer to do some things because he wouldn't ask for help. At work, my mantra was "If you need it, ask for help, there's no shame in asking.". Ahhhh to have taken my own advise. I can suck it up because I own this, it's not the same for me as it is others. Let me suck it up, and who ever needs to have that time to be upset, cry, break a dish, vent it out. In the long run it'll help both of us. A bit of something: "Surprise surprise surprise" was what Gomer Pyle USMC used to tell his drill Sgt back in the 60s early 70s, for those of you too young to remember the TV show
Acceptance means that I have to accept the fact my thought bucket has run dry.
Today's blog was brought to you by the word "dammit" and the number 3.
All y'all take care now, hear?
Accepting the diagnosis by no means saying I like it, or won't fight it with what I have. What it means is I've come to terms with the oncoming end of my life. Do I like that? Well hell no, I don't like that, but that doesn't mean I'm not at peace with this part of my life. My cancer is rapid growth stuff. When even the Oncologist looks at CT's taken before, after, and immediately before surgery and says "Wow, that grows really fast", maybe it's time to say, "Wow, my cancer grows really fast". I know it does. I can sort of tell why it's having a growth spurt. I get tired, cranky, and achy. Like this morning. Well, this morning could be lag from the fun I had at Kerrville. That being the case, it's no big deal, because that's an ache I'd put up with every day if it meant I'd had fun the weekend before.
Acceptance means that I'm not willing to spend what time I have left, hooked up to a PICC line having poison pumped into me once a week for God knows how long. It means that I do not want to spend my time trying to keep from vomiting. That creates an entirely different set of problems than simple Chemo yakking does. It means that I'd rather be as lucid as possible. It means that what time I have left, be it a years, way less or maybe more, isn't going to be spent wondering if it slowed down the cancer enough to squeeze in an extra 2-3 weeks. No, that's not doing it on my terms. That's letting someone who doesn't have a personal interest vested in me decide how my life is going to proceed. The clinical trial was going to be more harsh than the standard Chemo. Bless their hearts at MD Anderson, because I know they are looking down range and trying to help other people after I'm gone. I'm thrilled they do that, by the way. They have samples of my cancer tumors and tissue. They have a sample of the muscle that died in my mouth. That's enough of Rock Guinea Pig, they don't need me to be sick for them at all, not if it's not going to cure me, and I as told it would not.
Acceptance means that I see things a bit differently. There are places I probably won't see now. Somewhere down the line there are people I'm going to see for the last time. I can taste a bit of the foods I like, but I won't be eating them again. People's smiles, voices, how they smell, the feel or their hands when we greet each other. Those are things that, one day, will be the last time I experience that particular person. Jesus, sounds like I'm being a drag, right? I'm not. These are the things I took for granted when I thought I was immortal after beating Baxter down the first time. Not that I didn't cherish my friendship with everyone, that goes without saying. But I took a lot of things for granted. I don't do that now. How often do we really just look and soak in what we are seeing? How the flats turn into the hills? How the hills are wooded differently in different areas? I can tell you when we are getting close to West Texas just by the difference in the Mesquite and pasture land, even if I've been asleep and wake up not knowing where we are exactly. Everyone's hands feel different when you shake them, because it's a person, not just their hand. Pay attention next time you grab mitts with more than a couple of people, it's amazing what you can tell from just grabbing a hand and shaking it. I started noticing that more lately. I think I'm making an image of that person that won't be lost...ever. I'll take some of everyone with me, where ever it is I'm going on the next leg of the journey. I'll have dozens of people with me, how can that be a bad thing?
Acceptance makes it easier to get everything Immortal Rock should have gotten done, finished in a timely manner. Put this off, put that off, the next thing you know none of the stuff you wanted done is even close to finished and you're out of time. Me? Hell, I'm getting that done. When the time comes to shake these mortal coils, the only thing the family will have to do is be with each other. No mad running around getting stuff finished for my depot stop. Except maybe the party stuff. That'll have to be set up later. Although we are having a BBQ sometime in November, hopefully while I'm still able and feel up to it. I find myself not planning too far out right now. More my style actually, to begin with. It's giving me a chance to reconnect with some folks I hadn't seen or talked to in years. Not to lay a guilt trip on them or myself, but to let them know that in some way they made a difference in my life. That's a good thing for me to do right now, and I hope it's a good thing for those people to know as well. Acceptance also means it's okay to admit I'm tired and I hurt a lot of the time. Before either round with cancer I had a lot of aches from things I did when I between 4 and 47. I had aches and minor arthritis from broken bones. Pulled muscles and over exerted everything. It was something I had and learned to live with. Lately I get asked a lot "What's your pain level?". It constantly ran a 2-3. So compared to what? A good day? Then a 5 or 6 is tolerable. And I hate to admit it when I'm really hurting. Shit, I limp a bit because I'm missing part of a quad, so what's a little pain? The Palliative Care Dr at MDA said, "It matters because you deserve to be as comfortable as you can". That struck home for some reason. Okay, that works for me, I accept that. And anyone at Kerrville can attest that I got as comfortable as I could be on that day.
Acceptance also means that I'm not going to keep telling everyone to suck it up. It gives me the peace of mind to let everyone that wants to be upset with my current run from Terminal Velocity to Critical Mass, be upset. Do I like to see my loved ones cry? I can be a mean old Son of a Bitch at times, but I'm not heartless. It really upsets me. But, acceptable for me now because the folks I love need to have a time to be upset, leak a bit, be mad, all of that. They can even be mad at me for behaving like I was Immortal Rock and doing as I damn well pleased because I wasn't ever gonna die. Surprise surprise surprise Sgt. Carter, looks like I might after all. I didn't used to like the fuss. My wife thinks she can't cry in front of me, I think, so she can look strong for me. WRONG Lizzy, you can. You've always been my strength and my rock, nothing is gonna change that. It also means I've given up a chunk of myself. I was always loathe to accept help, let alone ask for it. Stubborn Rock never liked having to have help. Stubborn Rock often took longer to do some things because he wouldn't ask for help. At work, my mantra was "If you need it, ask for help, there's no shame in asking.". Ahhhh to have taken my own advise. I can suck it up because I own this, it's not the same for me as it is others. Let me suck it up, and who ever needs to have that time to be upset, cry, break a dish, vent it out. In the long run it'll help both of us. A bit of something: "Surprise surprise surprise" was what Gomer Pyle USMC used to tell his drill Sgt back in the 60s early 70s, for those of you too young to remember the TV show
Acceptance means that I have to accept the fact my thought bucket has run dry.
Today's blog was brought to you by the word "dammit" and the number 3.
All y'all take care now, hear?
Sunday, August 18, 2013
IT'S SO FLUFFY!!!
We went to a Highland Games in Kerrville TX yesterday. It was held to coincide with the River Parade. It's also the first time that Kerrville has had a Highland games. The venue was in a nice park right along the river (duh, Rock. River Parade) and though the day was hot, there was a decent breeze and most importantly there were several of my friends.
It's tough to go to the games, for me, and not be able to throw. But I do like the athletes. So when the Masters and Women divisions are put together to throw at the same time, I went down to shoot the breeze and talk myself into trying the event. Talking myself into trying wasn't so hard. I've got a pain patch on, right? How bad could it be?, I said. Give it a shot!, I said. So I did. Borrowed a hay fork and thought I'd try at 18'. Generally that's a cake walk for me, so sure, why not. I grab Brittney Boswell's fork because it's like mine, and she's let me use it before. I get all set. Feels pretty decent. Do my wind up and let it loose. Oh yeah! High enough, but not over the bar....then OWWWWW. Oh Geez Louise did that hurt. Not just the "wow, I've not done that in a long, long time" kind of hurt. But the kind of hurt that says "No, really, that hurt bad, it's okay to either pee pee a little or cry" kind of hurt. I put B's fork on the ground properly, calmly walk by and say "Ow" and then lament how I've got to sit down for a minute. Suuuuure, because honestly it's sit down or roll up into a ball for the afternoon. Meandering back to the car I slip out the liquid pain medicine that's for back up to the patch. I fix myself a dose and shove that right into the tube. It helps a little. So now I figure most of my time is going to be spent relaxing in a chair and being stoned. I was right, too. One of the guys had some stuff called "Pain a Trater" from Melaluca. Wicked shit that. It's like ICY HOT on steroids, with a touch of aspirin. That really killed the pain off as long as I didn't over do it. Thanks Aaron and Tamyna Woods.
I talked a little with a lot of the guys there. It's tough since I can't speak well and have to use the board. There were a lot of "I didn't get a damn bit of that" or "what?" going on. That's cool, I understand that. I can hear myself too, and once in a while even I think WTF? There were a lot of kids out there too, which is typical for a Highland Games. Families get together and come to the games. One of the guys grandparents came to see him throw. That's pretty cool if you ask me. Anyway, back to the kids. They had all kinds of questions, which I don't mind. It beats having people look and get that "oh you poor man" expression. Kids are pretty blunt. If you're scary, they won't come around. If they are curious and one brave comes up to talk and ask questions. They all gather around to hear and ask too. So I don't mind. They watched me put water in my feeding tube. "Does that hurt?", "Where does it go?", and "Can you taste it?" were the most common questions. I had to write down the answers and either a grown up or one of the kids that could read would tell the others what I wrote down. One of the little girls is whispering to her mother. She came over, put her little head down and asked me if she could use my board to draw me a picture. Of course I told no. Wrong, I let her draw me a nice picture, then I took her picture and showed her it was on my phone. I didn't see my board much the rest of the afternoon. I have now found a way to keep kids busy at the games. Dry erase board and neon colored markers. One of the kids was older, probably 12 or so. She asked the really difficult questions. Not difficult for me to talk about, but difficult to hit that middle ground between answering a 4-8 year olds questions, and answering an older kids. I hope I got that figured out to her satisfaction.
Liz may have been bored to death, but I love her for coming with me. I'd have had hell driving myself home, and it wouldn't have been safe on the amount of pain killer I ingested. She's looking out for me and I love her to death for doing that. It was hot, and a bit uncomfortable, and she is a trooper and my rock. We laughed a lot over my goofy stoned ass milling around the grounds. Geez, there for a while I couldn't hit my ass with both hands if I'd had a map, compass, and someone aiming them for me.. The river looked some cool and inviting I was thinking about just jumping in. Until I remembered I've got this huge hole in my neck. Can you say "Titanic"? I knew you could. We both laughed about that.
And that's where we get IT'S SO FLUFFY!!!! Because after the sheaf toss shot of pain, that's how I felt on the pain killer. Fluffy.
At the end of the day, we saw some pretty country. Visited with good friends. And I found a limit as to what I can do........for now.
Some of the country was like seeing it with a different set of eyes as well. How fast it changes from the Llano Estacado of the Permian Basin, to heading south toward I-10 where the country is more hilly, and into the Guadalupe River basin. So much change in only 260 miles. And it changes fast. In Kansas it was close to 300 miles to Liz's folks in SE Kansas, the change from western plains to south central plains to rolling Flint Hills to more sharply hilled and forested lands is a lot more gradual. Both are very pretty, and I'm glad I get to see the country I live in now. I always knew each area had it's own type of pretty, but I see it a little different now. That's a cool thing
Keep it fluffy, all y'all
Saturday, August 17, 2013
Saturday musings
Ahhh, to crash out at 2030 and be awake at 0300. I got my feeding done, my back pack filled with kilt and feed in anticipation of seeing friends throw at Kerrville today. Even brushed my hairs, folded some laundry and as soon as I'm finished here I'll do the morning med thing. I'm pretty fortunate, I'm only taking 2 meds on a routine. Well, I'm not counting the pain patch, it's a 3 day little devil, or the fun in a bottle. I only take that as I need it. Which is a good thing that I hope lasts quite a while. Being stoned isn't all that fun if it's a have to do thing. And I suspect I wouldn't like it much as a recreational thing either. I've been too used to having to have a clear head to keep from getting squashed or killed by poison gas that I just don't like feeling to cloudy. Oh, don't get me wrong, when that pain level hits an 8 or higher, that cloudy feeling is just....capital.
A couple of days from now my oldest will be back in town with my grandson. They'll have to live here until we can find something they can afford to live in, and right now that's going to take some time. What with the sustained oil boom going on and seeing as how the Permian Basin has almost 2/3 of the total number of rigs drilling for oil and gas, the law of supply and demand is in place. Rent is bat shit high right now. Then again we have the lowest unemployment in the state in Midland as well. Big economy, not enough housing to go around. It's expensive. Which, in itself isn't a bad thing, it just makes one have to be a bit creative in how they spend and live. I'll be thrilled to have her and Bo home with me though. We always have had a good time, even when I've crawled her ass about small things. I can't get out of dad mode and now I see more about my parents than I used to see. Interesting how things turn that damn corner. I never was my kids friend when they were small. I was a parent and I acted like a parent. Now that they are grown and growing up, I can be their friend as well. They are all independent kids, and I'm damn proud of all 4 of them. They live their own lives, the two oldest, and are out in the big world doing quite well, with more confidence and goal oriented than I was at their age. Either I helped aim them the right direction, or I made them into old folks ahead of their time.
I miss the older kids. I didn't get to see enough of them when I was working, because of changing areas and getting promoted took away more of my free time. I was just about to turn that corner when the cancer came back. I can't say I "shoulda" because that's in the past and that part is over and can't be changed. What I do is try and at least text them every day now. It's not perfect, but it is what it is and I can live with that. Well, for about another 10-11 months anyway LOL
The hospice thing is going to be interesting. I don't know if they get a lot of clientele that aren't frightened or upset by what lies ahead for them. The people that have come to visit rave about my attitude. They don't realize that nothing has changed as far as that goes. In the last several years I've quit letting what may happen bother me. Not to say I don't try and set goals to obtain, I just don't sweat the shit I can't fix anymore. I'd been better off years ago if I'd taken that attitude and enjoyed what was handed to me instead of cursing the dark for lack of a candle. I don't feel like I wasted my time or energy, it was just a silly thing to do. Being upset by things you can't change, looking back I can't see why I let it bother me so. That's in the past, so I don't dwell on it, because that's worse than letting the shit you can't change bother you. I skipped that part of the lesson in "IF" for a long time. Silly boy
Since I've got this God awful mess of a neck I can't use a tracheotomy collar to hold the tube in place, and there's no sense in adding a permanent trach to me, so we improvise. Using pieces of the collar and tape (it was stitched in, but my skin got to the point the stitches just pulled out. Yes it stung) to hold the tube in where it belongs. If I'm not careful when I shower, the tape gets wet and won't hold. A couple of times this week I'm boppin along and something just doesn't feel right, so I glance down and there's my trach on my chest. One side of the tape holding it from falling clear onto the floor. Crap.
The first time I had hell getting it back in and taped in place. For starters it's a bit disconcerting to see a gaping hole in your throat. Then, while I'm cleaning the tube and getting the tape ready, I begin to think. Oh shit, cool! That's almost ghost/zombie like! Or Star Trek from the 60's like. Yep, I'm warped. Putting it back isn't so cool. The longer it's out, even a matter of 10-15 minutes, the hole starts to close a bit. Let's just say it's a bit uncomfortable to put back in. Then I seem to need that third arm I always wanted when I bar hopped. You know, guys, the one to prop you up while you do your business in the can, without having to set your drink down. Now it would be handy to hold the tube with I tape it in where it belongs. Did I panic the first time I coughed it out? Fuck yes I did, for a couple of seconds anyway. This is how I breathe. Hard to not let that bug you a little! Then it's funny to me. Warped as I am I can visualize Jackie Gleason on the Honeymooners if he'd had the similar situation. All I lack is Art Carney LOL
I write about not being able to speak well. It's true, I can't. My SLP has had students all summer. They are very nice, caring young women. We spoke about me intimidating them when they came to observe and help Michelle with my exercises and swallowing. And yes, I did. Not attitude or personality wise, but because I have so many issues going at once. I have nearly all the parts you need to speak clearly removed. Soft palate and my base of tongue, and I can't wear my dentures because of my surgery, and since the cancer is back, there's no point in having custom dentures with a prosthetic soft palate built. So, I'm missing the essential parts of clear speech. Anything that requires pressure in the mouth to say, "F", "S" "B" "P" "G" sounds, for example are difficult if not impossible for me to say. The trach adds to that problem, but I have a speaking valve I can wear that helps. I also can't swallow all that I need to be able to swallow to keep from building up fluids at the back of my throat. I can swallow a little, but not nearly enough. This will get better if we can get the swelling from my last surgery to come down a little, then it'll get worse again as the cancer progresses. Occasionally I bleed a bit and aspirate that. It's from the cancer and my throat getting raw. So, all this together and the young ladies were intimidated by the circumstances. We talked about that, and in the end I think they have seen, with just me, a lot of issues that they may never see in one patient at the same time for a while. We had a good time, and I enjoyed the students company. We both learned something. They learned they could work with a multi issue patient, I learned that enthusiasm is a good thing. And that different approaches to the same problem can't hurt, and often help. My SLP is wise, she let the students and I work away, and only gave nudges in the right direction if we got off base. Twas a good summer.
Now, girls and boys, it's time for me to hit the bricks and head to Kerrville. Y'all come back now, hear?
A couple of days from now my oldest will be back in town with my grandson. They'll have to live here until we can find something they can afford to live in, and right now that's going to take some time. What with the sustained oil boom going on and seeing as how the Permian Basin has almost 2/3 of the total number of rigs drilling for oil and gas, the law of supply and demand is in place. Rent is bat shit high right now. Then again we have the lowest unemployment in the state in Midland as well. Big economy, not enough housing to go around. It's expensive. Which, in itself isn't a bad thing, it just makes one have to be a bit creative in how they spend and live. I'll be thrilled to have her and Bo home with me though. We always have had a good time, even when I've crawled her ass about small things. I can't get out of dad mode and now I see more about my parents than I used to see. Interesting how things turn that damn corner. I never was my kids friend when they were small. I was a parent and I acted like a parent. Now that they are grown and growing up, I can be their friend as well. They are all independent kids, and I'm damn proud of all 4 of them. They live their own lives, the two oldest, and are out in the big world doing quite well, with more confidence and goal oriented than I was at their age. Either I helped aim them the right direction, or I made them into old folks ahead of their time.
I miss the older kids. I didn't get to see enough of them when I was working, because of changing areas and getting promoted took away more of my free time. I was just about to turn that corner when the cancer came back. I can't say I "shoulda" because that's in the past and that part is over and can't be changed. What I do is try and at least text them every day now. It's not perfect, but it is what it is and I can live with that. Well, for about another 10-11 months anyway LOL
The hospice thing is going to be interesting. I don't know if they get a lot of clientele that aren't frightened or upset by what lies ahead for them. The people that have come to visit rave about my attitude. They don't realize that nothing has changed as far as that goes. In the last several years I've quit letting what may happen bother me. Not to say I don't try and set goals to obtain, I just don't sweat the shit I can't fix anymore. I'd been better off years ago if I'd taken that attitude and enjoyed what was handed to me instead of cursing the dark for lack of a candle. I don't feel like I wasted my time or energy, it was just a silly thing to do. Being upset by things you can't change, looking back I can't see why I let it bother me so. That's in the past, so I don't dwell on it, because that's worse than letting the shit you can't change bother you. I skipped that part of the lesson in "IF" for a long time. Silly boy
Since I've got this God awful mess of a neck I can't use a tracheotomy collar to hold the tube in place, and there's no sense in adding a permanent trach to me, so we improvise. Using pieces of the collar and tape (it was stitched in, but my skin got to the point the stitches just pulled out. Yes it stung) to hold the tube in where it belongs. If I'm not careful when I shower, the tape gets wet and won't hold. A couple of times this week I'm boppin along and something just doesn't feel right, so I glance down and there's my trach on my chest. One side of the tape holding it from falling clear onto the floor. Crap.
The first time I had hell getting it back in and taped in place. For starters it's a bit disconcerting to see a gaping hole in your throat. Then, while I'm cleaning the tube and getting the tape ready, I begin to think. Oh shit, cool! That's almost ghost/zombie like! Or Star Trek from the 60's like. Yep, I'm warped. Putting it back isn't so cool. The longer it's out, even a matter of 10-15 minutes, the hole starts to close a bit. Let's just say it's a bit uncomfortable to put back in. Then I seem to need that third arm I always wanted when I bar hopped. You know, guys, the one to prop you up while you do your business in the can, without having to set your drink down. Now it would be handy to hold the tube with I tape it in where it belongs. Did I panic the first time I coughed it out? Fuck yes I did, for a couple of seconds anyway. This is how I breathe. Hard to not let that bug you a little! Then it's funny to me. Warped as I am I can visualize Jackie Gleason on the Honeymooners if he'd had the similar situation. All I lack is Art Carney LOL
I write about not being able to speak well. It's true, I can't. My SLP has had students all summer. They are very nice, caring young women. We spoke about me intimidating them when they came to observe and help Michelle with my exercises and swallowing. And yes, I did. Not attitude or personality wise, but because I have so many issues going at once. I have nearly all the parts you need to speak clearly removed. Soft palate and my base of tongue, and I can't wear my dentures because of my surgery, and since the cancer is back, there's no point in having custom dentures with a prosthetic soft palate built. So, I'm missing the essential parts of clear speech. Anything that requires pressure in the mouth to say, "F", "S" "B" "P" "G" sounds, for example are difficult if not impossible for me to say. The trach adds to that problem, but I have a speaking valve I can wear that helps. I also can't swallow all that I need to be able to swallow to keep from building up fluids at the back of my throat. I can swallow a little, but not nearly enough. This will get better if we can get the swelling from my last surgery to come down a little, then it'll get worse again as the cancer progresses. Occasionally I bleed a bit and aspirate that. It's from the cancer and my throat getting raw. So, all this together and the young ladies were intimidated by the circumstances. We talked about that, and in the end I think they have seen, with just me, a lot of issues that they may never see in one patient at the same time for a while. We had a good time, and I enjoyed the students company. We both learned something. They learned they could work with a multi issue patient, I learned that enthusiasm is a good thing. And that different approaches to the same problem can't hurt, and often help. My SLP is wise, she let the students and I work away, and only gave nudges in the right direction if we got off base. Twas a good summer.
Now, girls and boys, it's time for me to hit the bricks and head to Kerrville. Y'all come back now, hear?
Friday, August 16, 2013
Stuff and things
Yay!! Hospice came by the house yesterday and got the paperwork started and have begun the palliative care end of things. It's going to be nice for Liz since all the worry about getting formula, feeding bags, and all the little stuff has been taken off her shoulders. It's going to be a slight pain in the ass for me. A nurse will come by a couple times a week to check on me. Generally I'm used to taking care of myself, and knowing when to go to the Doc. But as time moves on, it will be nice to have the nurse check on me. There was one hitch, and no, I was not diplomatic, and it wasn't a big hitch.
"Our physician doesn't like these patches, he'd rather give you something you can put down your tube for pain control". Remember, MY terms, right? "Well, he can shove that idea up his ass. The patches work fine, and they are allowing me to be mobile. I'm not too stoned to drive, go to therapy, and as soon as the ab pull heals, back to the gym. The patches stay!" No, not diplomatic at all. I of course apologized, and explained that after 8 almost 9 months of being told what was best for me, this is one I'm not backing down on. I think they were surprised. My life, my death, my terms. Hospice said right off their job was to make me comfortable. Comfortable at this time is the pain patch. Sorry dudes, no exceptions on this. I'm very happy that Liz is going to get a break from the little day to day stuff we had to put up with since I can't speak well, and certainly not the phone. That ought to put a kick in her step, I hope.
Tomorrow The Lovely and I are going to Kerrville, Tx to see a Highland Game being put on by some of my friends. It's the first time Kerrville is having a games, so they need the support. For me it's nice to get out and watch them throw, even if I can't anymore. These are good athletes, better people, and fun to be around. That's the appeal of the Heavy Athletics to me personally. I was at my best a middle of the road athlete, but I played hard and had fun. Always got good advise, and a lot of laughs. The folks worked at it harder than I did, they continued to improve. I couldn't work that hard at it. The way I'm built, if I work very hard at a sport it slowly loses it's fun level and becomes a chore for me. I get angry with myself. My performance suffers, and I get more angry with myself. It eventually ruins the sport for me and everyone around me. It's why I gave my gold clubs to my son. I lost that ability to have a good time chasing the ball around. The bad shot chapped my ass, which lead to another bad shot, and so on. By the time I DID hit a decent hole, I was so pissed at myself I took no joy in that. I didn't want the sport I enjoyed more than any I've done to get that way with me. God, what a waste of good times and people that would have been. Nope, better to suck and enjoy the personal best moments, than to have a slew of personal best and not enjoy any of them.
My wife's co-workers are in a softball tournament that Liz is going to be at in September. They made the coolest shirt. And I've no way to show it here, dammit. I haven't downloaded any pictures from my phone to the laptop. Oooops, too lazy. Needless to say, it's become quite popular. I think we are gonna sell some for a fundraiser to kind of offset the cost of trips to Houston. That's pretty cool. The shirt made my wife and my eyes leak a little. It's cool, and very sweet that they are using that for their team jersey. Liz is loved at work for sure. Good folks there
I've had weird shit going on. Different that usual, but nothing too major I don't think. My pec muscle that's stuck in my mouth cramps. No big deal, it's done that since they put it in. This has an occasionally rough twist. Twice, it's cramped up really hard and fast, and popped the right side of my jaw out of place and slammed it right back in. Twice more, it's cramped and backed off, then cramped up very slowly, but doesn't stop and does the same thing. pops my right jaw out then back in
Either way it brings stars to my eyes and really smarts. The surgery has readjusted my bio mechanics once again. This time, when they released that pec muscle just a bit, it allowed my neck and shoulder slide back into their proper place. That's created a real ouch in my back between my shoulder blades. Generally I can get that to stop, but after a day of that, I get tired and can't get them to relax and take a pain med to get me over the hump. Apparently, I can't stand that achy feeling shit as well as I thought. Dammit
OH!! Yeah, pet peeve. If I'm talking and you can't understand me, you don't have to say "I'm sorry, I didn't get that". It's not your fault, no need to apologize. I have a form of aphasia. It's okay not to understand me, no one gets everything I say. My wonderful SLP Michelle gets about 60-65% of what I say, more than enough to put into context and catch the other 35%. But, she's trained and has listened to me for the last 3 months, she has a biased ear to begin with, then to me being her patient, it compounds her ability to hear me well. All ya have to do is say "I can't understand you", I'll right it down. No shame or guilt on you're part at all. We'll work around it, and it's no skin off my nose. What is skin off my nose is trying to guess. That frustrates my ass to no end. It's frustrating because I get into the "I'll keep trying to get them to understand" circle instead of just saying, "Read this"
We'll work around that, no big deal. And don't misunderstand, it's awkward and a pain in the ass for your to not understand as well. It's probably a bit embarrassing. I mean, shit, you're trying to hear as well as me trying to speak. a PITA
Here's to hoping I keep the Hospice folks guessing for quite a while. For my city working buddies, TGIF, for the rotary guys, safe shift. For my pumping buds, some of you it is Friday TGIF, for others it's your first Wednesday. Be careful and safe. Traveling friends, keep your mind in the middle, and remember, brakes are a help, not your best friend. Faith winds and following seas.
"Our physician doesn't like these patches, he'd rather give you something you can put down your tube for pain control". Remember, MY terms, right? "Well, he can shove that idea up his ass. The patches work fine, and they are allowing me to be mobile. I'm not too stoned to drive, go to therapy, and as soon as the ab pull heals, back to the gym. The patches stay!" No, not diplomatic at all. I of course apologized, and explained that after 8 almost 9 months of being told what was best for me, this is one I'm not backing down on. I think they were surprised. My life, my death, my terms. Hospice said right off their job was to make me comfortable. Comfortable at this time is the pain patch. Sorry dudes, no exceptions on this. I'm very happy that Liz is going to get a break from the little day to day stuff we had to put up with since I can't speak well, and certainly not the phone. That ought to put a kick in her step, I hope.
Tomorrow The Lovely and I are going to Kerrville, Tx to see a Highland Game being put on by some of my friends. It's the first time Kerrville is having a games, so they need the support. For me it's nice to get out and watch them throw, even if I can't anymore. These are good athletes, better people, and fun to be around. That's the appeal of the Heavy Athletics to me personally. I was at my best a middle of the road athlete, but I played hard and had fun. Always got good advise, and a lot of laughs. The folks worked at it harder than I did, they continued to improve. I couldn't work that hard at it. The way I'm built, if I work very hard at a sport it slowly loses it's fun level and becomes a chore for me. I get angry with myself. My performance suffers, and I get more angry with myself. It eventually ruins the sport for me and everyone around me. It's why I gave my gold clubs to my son. I lost that ability to have a good time chasing the ball around. The bad shot chapped my ass, which lead to another bad shot, and so on. By the time I DID hit a decent hole, I was so pissed at myself I took no joy in that. I didn't want the sport I enjoyed more than any I've done to get that way with me. God, what a waste of good times and people that would have been. Nope, better to suck and enjoy the personal best moments, than to have a slew of personal best and not enjoy any of them.
My wife's co-workers are in a softball tournament that Liz is going to be at in September. They made the coolest shirt. And I've no way to show it here, dammit. I haven't downloaded any pictures from my phone to the laptop. Oooops, too lazy. Needless to say, it's become quite popular. I think we are gonna sell some for a fundraiser to kind of offset the cost of trips to Houston. That's pretty cool. The shirt made my wife and my eyes leak a little. It's cool, and very sweet that they are using that for their team jersey. Liz is loved at work for sure. Good folks there
I've had weird shit going on. Different that usual, but nothing too major I don't think. My pec muscle that's stuck in my mouth cramps. No big deal, it's done that since they put it in. This has an occasionally rough twist. Twice, it's cramped up really hard and fast, and popped the right side of my jaw out of place and slammed it right back in. Twice more, it's cramped and backed off, then cramped up very slowly, but doesn't stop and does the same thing. pops my right jaw out then back in
Either way it brings stars to my eyes and really smarts. The surgery has readjusted my bio mechanics once again. This time, when they released that pec muscle just a bit, it allowed my neck and shoulder slide back into their proper place. That's created a real ouch in my back between my shoulder blades. Generally I can get that to stop, but after a day of that, I get tired and can't get them to relax and take a pain med to get me over the hump. Apparently, I can't stand that achy feeling shit as well as I thought. Dammit
OH!! Yeah, pet peeve. If I'm talking and you can't understand me, you don't have to say "I'm sorry, I didn't get that". It's not your fault, no need to apologize. I have a form of aphasia. It's okay not to understand me, no one gets everything I say. My wonderful SLP Michelle gets about 60-65% of what I say, more than enough to put into context and catch the other 35%. But, she's trained and has listened to me for the last 3 months, she has a biased ear to begin with, then to me being her patient, it compounds her ability to hear me well. All ya have to do is say "I can't understand you", I'll right it down. No shame or guilt on you're part at all. We'll work around it, and it's no skin off my nose. What is skin off my nose is trying to guess. That frustrates my ass to no end. It's frustrating because I get into the "I'll keep trying to get them to understand" circle instead of just saying, "Read this"
We'll work around that, no big deal. And don't misunderstand, it's awkward and a pain in the ass for your to not understand as well. It's probably a bit embarrassing. I mean, shit, you're trying to hear as well as me trying to speak. a PITA
Here's to hoping I keep the Hospice folks guessing for quite a while. For my city working buddies, TGIF, for the rotary guys, safe shift. For my pumping buds, some of you it is Friday TGIF, for others it's your first Wednesday. Be careful and safe. Traveling friends, keep your mind in the middle, and remember, brakes are a help, not your best friend. Faith winds and following seas.
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