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?
Monday, August 19, 2013
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.
Thursday, August 15, 2013
Palliative Care, Hospice
Right now I'm on palliative care. As I said before, I had no damn clue what it meant, but if it makes my wife cry just hearing it, it's bad, right? Naw, not for me or anyone else in my position. It's built to keep you comfortable as you can be before the end gets really close. They off more than just pain care. It's designed and set up to help with your mental needs as well. You get all the standardized questions about depression or anxiety problems. And I get the same quizzical look when they go over the answers I give them. Then comes the blank stare and "You're sure you feel okay?". I'm tempted to say, "No, I don't feel okay, I'm going to die and right now my face, neck, shoulders and back are killing me, but I'm not depressed!" I don't, because it's just them doing their job and making sure I don't fall into a depression that would be bad for my "quality of life". They asked over and over about my pain level. That's okay too, but the pain scale is a generality. Much like the BMI is a generality. If I do it in perspective to my pain level tolerance to other people's pain tolerance, the scale is skewed toward the other folk. I've set my own broken fingers and toes. I've missed work from broken bones, but not because I couldn't stand the pain, but because I wasn't mobile as much as I needed to be. I explained that to them, and get blinking eyes in return, as if the don't believe me. Liz knows, she tells them. They blink their eyes still. At any rate, I get some pain meds, as well as instructions to keep checking in with them. Fine, except I already know I'm going to rely on my local folks. It's closer, handier, and I'm not going to be back in Houston again. Especially to spend the last moments of my life. I'll be home, or it I can't be taken care of here, a Hospice house.
See, Palliative Care isn't a goodbye at all. It's a way to get me to Goodbye, and enjoy as much of my time as is possible ahead of that point. It's to help me keep my head on straight so I can focus upon living and not sink into depression. Good plan, but this and my friends keep me from being depressed. They will be surprised to find that I'm not afraid either. I'm at peace with this. Shit, I've had 7 months to get at peace with this situation. It's been at the back of my mind since I got diagnosed way back, but I had great hopes that the surgery would be successful, and it was until July of this year when it showed it had come back. I've got a good relationship with my maker. My atheist and agnostic buddies and family probably find that silly or stupid. That's their opinion, and they can hang onto that if they want. They also say they don't know if they could handle what I'm going through. Hmmmm, odd that.
Palliative care will also give Liz a break. They are part of Hospice here. They'll take care of ordering meds, formula, and all the other incidentals that are needed for me right now. As well as helping take care of me when that time comes as well. It should be a huge load off Liz's shoulders. She deserves the break. It's tough for her, I can see it in her face. She's a bit weepy, but that's okay. She's strong and is hurting, she can weep all she wants.
Naw, this isn't an early goodbye. It's just a means to help keeping me able to get to the goodbye point in the best shape possible. It's a break for the family and me. It's going to be a helping hand when I hit the downhill side of this road. All those things are good for everyone involved. Weird thought came to me last night. How are the blogs going to sound the closer I get to the end? Will I continue to be open and honest, or will I try and cover some of that part up, so as not to be morbid? Interesting thought. I'd be interested in all of your input. I've stated that I won' talk about what's down the road for me, because I consider that need to know, and no one but me really does need to know.
That's it for the day, unless Major Change shows up and demands a written statement. Live large today, girls and boys
See, Palliative Care isn't a goodbye at all. It's a way to get me to Goodbye, and enjoy as much of my time as is possible ahead of that point. It's to help me keep my head on straight so I can focus upon living and not sink into depression. Good plan, but this and my friends keep me from being depressed. They will be surprised to find that I'm not afraid either. I'm at peace with this. Shit, I've had 7 months to get at peace with this situation. It's been at the back of my mind since I got diagnosed way back, but I had great hopes that the surgery would be successful, and it was until July of this year when it showed it had come back. I've got a good relationship with my maker. My atheist and agnostic buddies and family probably find that silly or stupid. That's their opinion, and they can hang onto that if they want. They also say they don't know if they could handle what I'm going through. Hmmmm, odd that.
Palliative care will also give Liz a break. They are part of Hospice here. They'll take care of ordering meds, formula, and all the other incidentals that are needed for me right now. As well as helping take care of me when that time comes as well. It should be a huge load off Liz's shoulders. She deserves the break. It's tough for her, I can see it in her face. She's a bit weepy, but that's okay. She's strong and is hurting, she can weep all she wants.
Naw, this isn't an early goodbye. It's just a means to help keeping me able to get to the goodbye point in the best shape possible. It's a break for the family and me. It's going to be a helping hand when I hit the downhill side of this road. All those things are good for everyone involved. Weird thought came to me last night. How are the blogs going to sound the closer I get to the end? Will I continue to be open and honest, or will I try and cover some of that part up, so as not to be morbid? Interesting thought. I'd be interested in all of your input. I've stated that I won' talk about what's down the road for me, because I consider that need to know, and no one but me really does need to know.
That's it for the day, unless Major Change shows up and demands a written statement. Live large today, girls and boys
Wednesday, August 14, 2013
Randomly Speaking
No general direction this morning, just things that pop up in my thoughts, stay for a bit and are gone. Hope you all enjoy
Tis a charmed life I live. "Fool!! You're dying of cancer! WTF do you mean charmed?". Well, it's true. It's not often one gets a lead in to the end of their life. Most times it's BOOM, you're gone. For better or worse I've been given some extra time. That has given me the opportunity to get out and get my final arrangements made at the local funeral home, with an attorney, what financials I have, and some peripheral things that mean something to me, but maybe not anyone else. It's given me the chance to look back and reflect and see if I'm happy with the way I've lived my life. Damn straight, Skippy I am. I've no regrets, I wouldn't do anything different. If you're honest with yourself you can't change anything. All the things you've done in the past are what made you who you are now. To change any one thing throws the entire equation off. "The Uncertainty Principle" is held up here, Heisenberg would be proud I think. I'm finding I seem to have impacted a lot of people's lives, and for the most part it was for the better. I'm pleasantly surprised. When they've talked to me about that, I don't remember trying to be anything other than a buddy, shoulder, or ear. Never occurred to me, because of the way I liked to play, that I was being a mentor or anything even close to that. I thought I was just being me. I think I'm better off not knowing then, what I know now. I may have started trying and that would have spoiled it I think. I made a lot of long term friends. Even when we haven't spoken for years, we pick up right where we left off, just like it was yesterday. How cool is that, right? I've had more fun than a mortal should be allowed. That's something I intend to keep up long after I've shed these mortal coils.
I tell people I've done things on my terms. Sometimes that's been costly professionally and personally. You can't run off at the head to your bosses and not expect something to happen down the line. I thought at the time I was doing it to be independent. WRONG!!! I was doing that kind of foolishness to prove that I was right and my boss was wrong. I learned over the years that it doesn't matter if the boss is right or not, he's the boss. They don't like being told "See? I told ya so" any more than I do. So I changed, I did things on MY terms. Sure, I still knew if they were gonna foul up, but I did what they asked, exactly as they asked. So, if I was right and they weren't, I could call and say "I need you to come check my work, something isn't right. Could you come see if I did this like you asked?". Oh yeah, manipulative for certain. My terms set them up to have to say, "I was wrong" without losing face. It also gave me the chance to show them I knew what I was doing. That was the break over point. I got more "Fix this" than "Here's what you're going to do". They also knew that I was going to call if I wasn't sure about something. My way, their way, or indifferent, if it wasn't working, I wasn't afraid to ask for help.
My terms include a pretty piss poor filter on what I say, to an extent. I try not to be hurtful. Sometimes I'm certain that I am, and I don't intend for it to be that way at all. I've learned to be a bit more diplomatic in some circles. Other places, if you screw the pooch, for certain I'm gonna tell you. Then we can get together and work out a proper fix to the problem. The piss poor filter is also a way for me to get frustration off my chest. It's been said that if you don't want to know, don't ask Rock. Probably true, but I've tempered that somewhat in the sense that I use it to be more productive other than just to say "Christ, you're an idiot. How is it you're using my oxygen?".
I swear. A lot. Colorfully pasted together words and phrases are my specialty. Is it because I'm too stupid to put together a decent sentence? No, that's not it at all. Sometimes when "Would you please move your carts so my daughter and I can pass?" doesn't work after three tries, "Move your worthless blabbering fat fucking asses" often does the first time. Has that caused a confrontation or twelve? Yes, but I will treat rude behavior with like. You'll get from me exactly what you put forward. Respect and polite gets that right back. Rude and ugly? Well, you'll think rude and ugly by the time we are finished.
Is that proper behavior in a Politically Correct world? Hell no it's not, but it's being honest.
I've had a couple of people tell me that by being so open and honest that it's given them the courage to go get check ups they've been putting off. One of them, Shannon Waite, had cancer discovered in one breast. After hearing all the options, with pro's and cons of each option, she's voted for a mastectomy.
That's courage to me. We talk a lot about cancer and it's short falls. Other than death, geez. But it has pluses as well. To me anyway it does. It can bring out strength and mental stamina you may not have known you had. It's a test of personal will and determination. It's either going to make or break you. Caught early most cancer has a chance of being beaten, that doesn't mean it's going to be an easy road to follow. It just means you're chances of living and it not coming back are pretty good. Shannon knows all this and is choosing the road that is best for her. I'm proud of her, she's going at it with humor and toughness. Got to love a woman like that.
I love women. They smell better than men for starters. They are a tough lot, with a tender all over outside. They are fun for me to be around. I don't understand jack shit about them though, but I love them. Let's preface that with this : I love strong willed, intelligent women. I wouldn't give a hoot in hell for giggly, dumb broads. What a bore. I married a smart, strong woman almost 21 years ago. Haven't regretted a second of that. She's made me a better man along the way. My daughters are smart and strong women. Love them to pieces. Looking back, I don't think I ever hung around women that weren't. I've thought about why that is and it boils down to this. They really didn't need me for much other than to pick up heavy shit. And in the case of my Highland Games woman friends, they don't need me for that even. That means they let me hang around because they like me, not that they need me for anything other than a good innuendo laden conversation. I hope that while they are strong and smart, they also know there isn't anything I wouldn't do to keep them safe if it's within my power. Women are not to be placed on pedestals and worshipped, they're there to be a partner in your life. That means you defend them as best you can, for as long as you can. I do surely love women.
I've gotten to do a lot of neat things. There's a ton of neat things I'd love to go do, but I don't really have a bucket list. Life is a bucket list. I've tried, and for the most part have done, any damn thing I've wanted. That's why this blog is enjoyable to me. I like the writing. I like being open with friends, family, and people that have been reading this.
Trying to keep people informed is a good thing. Knowledge is power. With it it becomes more and more difficult to be a victim of anything. That applies to everyone. I'm not a victim of cancer, no way in hell, no how. I have it, but I've not let it make me a victim. Baxter is going to get my body eventually, barring a miracle. Baxter can have it. The stupid bastard has caused it to be cut on like a bad slab of beef. What cancer doesn't understand is that it can kill my body and it dies too. It never wins as long as I can think, feel and fight back. My mind and spirit stay intact, cancer's ass belongs to me, and in the end it dies with my body. Just not with me.
"Ramble on" HA!
Tis a charmed life I live. "Fool!! You're dying of cancer! WTF do you mean charmed?". Well, it's true. It's not often one gets a lead in to the end of their life. Most times it's BOOM, you're gone. For better or worse I've been given some extra time. That has given me the opportunity to get out and get my final arrangements made at the local funeral home, with an attorney, what financials I have, and some peripheral things that mean something to me, but maybe not anyone else. It's given me the chance to look back and reflect and see if I'm happy with the way I've lived my life. Damn straight, Skippy I am. I've no regrets, I wouldn't do anything different. If you're honest with yourself you can't change anything. All the things you've done in the past are what made you who you are now. To change any one thing throws the entire equation off. "The Uncertainty Principle" is held up here, Heisenberg would be proud I think. I'm finding I seem to have impacted a lot of people's lives, and for the most part it was for the better. I'm pleasantly surprised. When they've talked to me about that, I don't remember trying to be anything other than a buddy, shoulder, or ear. Never occurred to me, because of the way I liked to play, that I was being a mentor or anything even close to that. I thought I was just being me. I think I'm better off not knowing then, what I know now. I may have started trying and that would have spoiled it I think. I made a lot of long term friends. Even when we haven't spoken for years, we pick up right where we left off, just like it was yesterday. How cool is that, right? I've had more fun than a mortal should be allowed. That's something I intend to keep up long after I've shed these mortal coils.
I tell people I've done things on my terms. Sometimes that's been costly professionally and personally. You can't run off at the head to your bosses and not expect something to happen down the line. I thought at the time I was doing it to be independent. WRONG!!! I was doing that kind of foolishness to prove that I was right and my boss was wrong. I learned over the years that it doesn't matter if the boss is right or not, he's the boss. They don't like being told "See? I told ya so" any more than I do. So I changed, I did things on MY terms. Sure, I still knew if they were gonna foul up, but I did what they asked, exactly as they asked. So, if I was right and they weren't, I could call and say "I need you to come check my work, something isn't right. Could you come see if I did this like you asked?". Oh yeah, manipulative for certain. My terms set them up to have to say, "I was wrong" without losing face. It also gave me the chance to show them I knew what I was doing. That was the break over point. I got more "Fix this" than "Here's what you're going to do". They also knew that I was going to call if I wasn't sure about something. My way, their way, or indifferent, if it wasn't working, I wasn't afraid to ask for help.
My terms include a pretty piss poor filter on what I say, to an extent. I try not to be hurtful. Sometimes I'm certain that I am, and I don't intend for it to be that way at all. I've learned to be a bit more diplomatic in some circles. Other places, if you screw the pooch, for certain I'm gonna tell you. Then we can get together and work out a proper fix to the problem. The piss poor filter is also a way for me to get frustration off my chest. It's been said that if you don't want to know, don't ask Rock. Probably true, but I've tempered that somewhat in the sense that I use it to be more productive other than just to say "Christ, you're an idiot. How is it you're using my oxygen?".
I swear. A lot. Colorfully pasted together words and phrases are my specialty. Is it because I'm too stupid to put together a decent sentence? No, that's not it at all. Sometimes when "Would you please move your carts so my daughter and I can pass?" doesn't work after three tries, "Move your worthless blabbering fat fucking asses" often does the first time. Has that caused a confrontation or twelve? Yes, but I will treat rude behavior with like. You'll get from me exactly what you put forward. Respect and polite gets that right back. Rude and ugly? Well, you'll think rude and ugly by the time we are finished.
Is that proper behavior in a Politically Correct world? Hell no it's not, but it's being honest.
I've had a couple of people tell me that by being so open and honest that it's given them the courage to go get check ups they've been putting off. One of them, Shannon Waite, had cancer discovered in one breast. After hearing all the options, with pro's and cons of each option, she's voted for a mastectomy.
That's courage to me. We talk a lot about cancer and it's short falls. Other than death, geez. But it has pluses as well. To me anyway it does. It can bring out strength and mental stamina you may not have known you had. It's a test of personal will and determination. It's either going to make or break you. Caught early most cancer has a chance of being beaten, that doesn't mean it's going to be an easy road to follow. It just means you're chances of living and it not coming back are pretty good. Shannon knows all this and is choosing the road that is best for her. I'm proud of her, she's going at it with humor and toughness. Got to love a woman like that.
I love women. They smell better than men for starters. They are a tough lot, with a tender all over outside. They are fun for me to be around. I don't understand jack shit about them though, but I love them. Let's preface that with this : I love strong willed, intelligent women. I wouldn't give a hoot in hell for giggly, dumb broads. What a bore. I married a smart, strong woman almost 21 years ago. Haven't regretted a second of that. She's made me a better man along the way. My daughters are smart and strong women. Love them to pieces. Looking back, I don't think I ever hung around women that weren't. I've thought about why that is and it boils down to this. They really didn't need me for much other than to pick up heavy shit. And in the case of my Highland Games woman friends, they don't need me for that even. That means they let me hang around because they like me, not that they need me for anything other than a good innuendo laden conversation. I hope that while they are strong and smart, they also know there isn't anything I wouldn't do to keep them safe if it's within my power. Women are not to be placed on pedestals and worshipped, they're there to be a partner in your life. That means you defend them as best you can, for as long as you can. I do surely love women.
I've gotten to do a lot of neat things. There's a ton of neat things I'd love to go do, but I don't really have a bucket list. Life is a bucket list. I've tried, and for the most part have done, any damn thing I've wanted. That's why this blog is enjoyable to me. I like the writing. I like being open with friends, family, and people that have been reading this.
Trying to keep people informed is a good thing. Knowledge is power. With it it becomes more and more difficult to be a victim of anything. That applies to everyone. I'm not a victim of cancer, no way in hell, no how. I have it, but I've not let it make me a victim. Baxter is going to get my body eventually, barring a miracle. Baxter can have it. The stupid bastard has caused it to be cut on like a bad slab of beef. What cancer doesn't understand is that it can kill my body and it dies too. It never wins as long as I can think, feel and fight back. My mind and spirit stay intact, cancer's ass belongs to me, and in the end it dies with my body. Just not with me.
"Ramble on" HA!
Tuesday, August 13, 2013
Decisions, Decisions
Every day in our lives we are faced with decisions and choices. Most of the time they are pretty small. Do I want a salad, soup and salad, or fries with that steak. Small stuff. Regardless of what the choice, it boils to how you want to live. We all hear about how so many things are society, race, upbringing, economic standing, and that's what brought on X of a person's behavior. Some of that's true, but it all churns down to a personal choice. After all, there are plenty of good examples of what's right and wrong, and to say it's because they couldn't help it (barring some mental disorder) is a load of horse apples. We make our choices and generally have to live with the consequences. You choose to speed, don't bitch about the ticket. You choose to rob a home, don't cry because your ass is in jail. You're the Master of your fate whether you like it or not.
All that being said, have I made all good decisions? Oh hell no, no way no how. As confident as I am in myself, I'm not so delusional to think every choice I've made has been wise. I guess the difference is learning from the mistakes and trying to make it right. And I've not done all that as I could have either. I try, that's no joke. But somethings are never going to be made right because of the choices I made.
I could have gone to college, gotten a degree, and been a miserable SOB in a job I'm sure I'd hate. Or unemployed whining about not being able to find work instead of getting out and changing careers. And I hear a lot of that. I've offered to get people jobs here in the oil field, and some of those folks out of work 2 years, only to hear "I'd never live in Texas!!" or "I'll never work in the oil field! I have a degree!". Good, tough shit for you, but quit bitching about your choice to be unemployed when the jobs have been offered you.
Big rant that's going somewhere with Terminal Velocity, trust me. That's been bothering me a long time, and it's time to get it off my chest. Bless ya for putting up with it. Here's the reason why
Almost 5 years ago, coming up in September, I was diagnosed with cancer. It was a secondary spot, localized in one lymph node in my lower left jaw line. I had biopsies of my mouth and throat, PET scans, CT's and a whole plate full of other tests. Everyone was sure it was localized and the primary spot had been killed by my body. Pretty cool. I had a choice of surgery plus chemo and radiation, or strong rounds of chemo and strong radiation. Both were about the same odds so I opted not to get sliced open. Chemo put me in the hospital for three days, radiation burnt me bag enough I bled from the cracked skin. And I got chemo once a week during the radiation. No fun, but it killed Baxter and after what seemed like forever, the second set of scans came back clear and I was sure I'd gotten it beaten down.
Three years of all clear, and 4 years after my first diagnosis, Baxter the Bastard cancer was back. And pissed off. He was swelling my throat down, and at the time MD Anderson thought probably not into the bone of my jaw yet, but most likely would get there. The Drs, Liz and I discussed options.
They were surgery, which offered the best results after all the stuff I'd already had done. Chemo alone, which was no cure even then since I'd already had as much radiation as I could stand. Or do nothing and slowly be choked to death. Surgery seemed like a plan. As well as one Chemo cycle to slow down the tumor growth since the first open time for extensive surgery was in late January.
The choice brought on this.
While the chemo wasn't as harsh as 5FU on a five day infusion, it had it's own special wonders. So nauseous I couldn't eat. Hence the herbal enhancement, which made me sleep, then wake up and eat like a pig. It dried my skin out so badly my feet cracked and bled. My hair came out in chunks. The worst, the white cell growth promoting drug. Painful. I won't say how painful because I've got friends doing chemo, and they may have a different reaction and I surely do NOT want them to freak and not do the shots if they need them. It'll help keep them alive if they take the shot.
On the plus side, I still had coffee with my buds. I could still eat. And after it was all said and done, I was back in the gym putting muscle weight back on and was feeling pretty spry
I've already talked about what happened with surgery, and with all that I still think it was the best choice and decision. Yesterday Liz asked "What if we'd gone to MD Anderson in the first place?"
I figure it wouldn't have changed a thing. The tumor was isolated 5 years ago, and nothing showed up anywhere else . Besides, we both made that decision based upon the Dr opinion and all the research we did on the cancer on our own. It was a good decision and I'll stand by it until I die. Okay, bad choice of wording there. Addendum: The MD Anderson surgeon flat told us our first visit there, that given all the treatment I'd had previously, and with the surgery, if it came back, that was gonna be all she wrote. Good honest Doctor, I liked Holsinger. You guys at Stanford Medical got a hell of a good doctor, don't fuck it up.
That brings us up to seeing the MD chemo folks. They said, "Do the Chemo". I asked about illness and the other parts of what they wanted. "Do the chemo", and "There are Clinical Trials". Hmmmm, this is a research hospital first and foremost. It's part and parcel to why the have a great cure rate and have done so much for curing cancer. I get that. First choice here "Let me do the chemo at home, I'll do one cycle. After what you described as symptoms, and since it's no cure and there's added chance of life being extended, no Clinical trials, thank you". Big decision, but mine. Twice more with pushing the clinical trial. I get that, it can help people down the road. Guess what? MD Anderson has probably 200 pages of files from every doctor, lab and treatment I've had. They have several different tumor sites and tissue from each. Blood samples for study, and my own observations that I saw all my Doctors right down. I'm no longer your test bunny. Sorry, I've given my share. No surgery? Hell yes I'd do the Clinical study. But I'd still be eating and speaking and would have all my muscle tissue where it belonged and not in my mouth or the lab or the trash. Different scenarios, different decision
Yesterday I see my local Onco. He goes over the chemo protocol with me, including how sick I'll get and pain involved. My port is blown out, so I'd have to have a PICC line. My veins from all the chemo and surgical IV's are blown down, it's hard to find a good spot to draw blood any longer. He goes over the balance of pain to gain. Something I understand. No pain, No gain, right? In this case pain and no gain. He recommends not doing it, I agree. But there's a caveat with that. Liz helps me with this decision. For twenty-two years we make decisions that effect both of us as a team. No sneaky shit, just hash it out and go from there. We live with our decisions, and the consequences there in.
I come home and talk with Liz about it (she can understand a lot of what I say because she's used to it). I ask her what she thinks, "I don't want you to suffer". I set up an appointment for us to see the Dr together, so she can her what I heard, that way our decision NOT to do chemo is completely informed. It's a decision we've made, and one I'll stick with.
So, Terminal Velocity got a little boost. I can't say how much of a boost, but even with chemo it was not much of a braking process. And besides, this is how we roll. Balls to the wall
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