Well, therapy.
I sat on my ass for 2 months asking myself "why aren't I working out?" That was an easy answer, MD Anderson said not to do anything until they said okay. We asked, Liz and I, more than once for a timeline on that before we left. I've trained a little, I know how fast you begin to lose muscle mass and how quickly unused muscle and tendons atrophy. I know in my heart waiting is bad for me. But I do it anyway.
After several attempts at getting e-mail and phone calls from Liz to MDA returned, I jump on their FB page and tell them, "Since I was dismissed from the hospital, it's as if I didn't exist. I need to get cleared for PT and other rehab, but no calls or e-mails are returned. It's as if once you leave the grounds, you're kicked to the curb.". That started a turd storm. The FB administrators asked for my phone number, and after telling them that I couldn't speak, but my wife would love to, I gave them her number and e-mail address. Within 24 hrs we had calls from more than one Dr.. I was set up with PT and Speech/Language therapy. Amazing what a true statement, placed in a public forum can do for you.
Physical therapy. I've had some pain before, I set my own broken fingers and toes and the like. My surgery sites hurt to some amount all the time. I ain't never hurt that bad in one spot in my life. Even rehabbing my torn bicep tendon didn't hurt that bad. My PT Barb would say, "If it's too painful tell me and we'll stop". No way I'm admitting it's too painful, right? Bullshit, I said it was more than once! Most of it was stretching already shrunken muscle and tendons. I still fight that a lot, but in the beginning it was a major pain. For reals.
To start, I couldn't raise both hand over my head at the same time. I can now, not like I could before, but the strength is slowly coming back. My chest where my pec was is tight all the time, the scar tissue doesn't seem to want to loosen up as fast as I would like. As fast as I would like would be, you know, yesterday. My left side is about useless as far as I can tell, my PT's tell me other wise. I find myself hung up on "Yeah? Well I used ta could...". As soon as I lose that attitude I do better, but I find myself wandering back there. Silly bear, that road goes no where.
I'm going back to the gym. 3 times a week, unless the pain knocks me down too far to get up. I find that I tend to way intense, which isn't good I'm sure.
Speech and Swallow therapy. Oh, the shit we take for granted. Like swallowing. It's natural, right? Don't even have to think about it, right? Wrong!!! I have to struggle to swallow anything. And sometimes, like when I was writing
this blog, I choke and cough so hard I throw up. Which means my sinuses fill because I don't have a soft palate. I cough so hard I can't see, which makes it a pain to make it to the head before I barf. I seldom make it, which means cleaning up a mess. Dammit
I found I couldn't speak at all. Well, a little, but no one could understand what I said. Talk about frustration on steroids. Not only did it piss me off, I could see the anguish in my families eyes as they struggled to understand me. I finally just quit. I text or wrote on my board. Yes, it was the easy way out, but it was less frustrating and my penmanship improved.
My SLP Michelle gave me a list of exercises, that seem silly until you try to do them. They are tough, and tiring. She also works me hard during our meetings, which is also tiring. It also works. Even when to some people it looks like we are horsing around, we are working. I gave my bud Barry Atkins one of the exercises to try, you all might as well try it too. Stick your tongue out, hold it with your teeth, and try to swallow. It's a bear to do. It's also my throat, with no base of tongue my tongue won't move back to help get a swallow started. Prior to SLP therapy I could swallow nothing. Now I can most of my saliva, and even some ice cream. It ain't much, but it was the world to me when that started.
Okay, the choking, coughing, throwing up fit has worn my old ass out. Time to TTFN
Take care, kids
Monday, August 5, 2013
Sunday, August 4, 2013
Bits and Pieces
I did the quick catch up on surgery and stuff. Sometimes it's a bit difficult to get an idea about what really went on for those, so if you'll bear with me, I'll go through it as I understand what they cut out of me.
For starters, let us run back over December for a bit. It was a strange month to me, for some reason. I got my Chemo protocol from MD Anderson set up so I could do that here in Midland. I would rather be home for that kind of stuff, rather than stuck in a hotel room for a once a week treatment that I thought might make me sick.
I asked right off for a Power Port (which has since blown out as we found the 8th of July), but they didn't think I'd need one. Second treatment, I got the port put in. Once again, I was right. Sheesh
I can't recall what I was given except for Cisplatin. That's based in platinum. Heavy metal poisoning LOL! The other two did wonderful things, like make my hair fall out and dried my skin out so badly that my face and neck hasn't gotten over that yet. I look like a snake that really needs to rub it's head on a rock and shed.
It did make me sick as hell. Once again the nausea meds didn't do squat, so I tried an herbal remedy. I can say this for certain. I'd hit the gym for 3 days straight, spend the next day in the infusion room (10 hrs to get 3 drugs in), and the next couple of days being ill. With the herbal aid it went like this. 3 days at the gym, all day infusion, up the next day, puff puff, pass the hell out. Wake up, eat like a pig, nap. Saturday, puff puff pass out, eat like a pig. After that I did fine for 3 days. I can say this, it's not the same type herbs we had back in the day. This stuff nailed my ass to the floor and didn't even say thanks! I lost some weight, but only about 10 lbs. What did happen was severe neuropathy that left my left foot like a lump. I couldn't flex it, or my toes. Unless I wore my lace up boots, I'd trip on it because I couldn't feel it on the ground. Weird
Chemo ends and I go to Houston for a week of pre-surgery tests. I hole up in the Econo-Lodge with some cereal, a pile of microwave food and 4 novels. The novels lasted 2 days, I got tired of microwave food and dined out a bit. I never get tired of corn flakes, though, or Grape Nuts. Go figure.
My bud John Moye showed up on Thursday, we ate like pigs for 3 days, shot pistols, laughed, went to a couple of appointments, and generally just hung out. That was great.
Liz got there on Sunday afternoon. Joe's Crab Shack was happy to see us. We dropped $90 on food, drinks and dessert. Older 2 kids got there Monday. Papadeaux was glad to see us too. Big meal, stopped for snacks and stuff. Hung out that evening. It was the last day I had any solid food, Jan 21, 2013.
We got up and headed in for a 5 AM call time for surgery. By now I'm used to waiting so it didn't take long to get back into pre-op. Got the shots, I don't recall getting wheeled out. We did give them instructions to shake my feet when they try to wake me up. I have a thing about my shoulders, I'll grab or punch if I'm woken up by having my shoulders shaken. Scared Liz once when we were first married. Ooops
Okay! Here's what they cut out the first time:
1/3 or more of my left lower jaw
All of the base of my tongue
Soft palate (it moved there between CT's)
4 lymph glands
Tumor wrapped around my left carotid artery
Plastic surgeon took the big muscle out of the outside of my right quad and stuffed it in my mouth.
That took about 14 hrs. The cancer hid out in different places than the CT showed
Things go okay, I can swallow a bit, still, can't talk for shit because my tongue wonders what the hell they did to it. Something isn't right though, a couple of days in. I smell something odd, and my mouth tastes funny. There's a pulse for the muscle, but I started to question it's health. They poked, prodded and looked but it appeared okay. Until the day they were gonna cut me loose. My head surgeon came in, looked and said I wasn't going anywhere, yet. Damn thing had died. I got hooked up to IV antibiotics and scheduled for surgery the next day. It's odd having something dead in your mouth that you haven't cooked first.
Next surgery! Go in, get the pre-op stuff, head to the table and get Nimbex, a muscle relaxant. It killed me. Apparently a drug allergy I knew nothing about. Anyway, they cut out the dead quad, and pulled my pec out to stuff in my mouth instead.
That took about 8 hrs. ICU for a couple nights. That place is no fun at all.
Back up to my floor and waiting again. Liz has been in my room since Jan 22, and hasn't left. I'm really weak now, and resistant to getting up and walking around like I know I should. I do anyway, whiny about it though. Sheesh.
I can't swallow this time. Pisses me off. My lip and chin are more fouled up, that pisses me off. I can't speak now for shit, that pisses me off. All this was done to keep me alive, and all the cancer was gone, so I got over being pissed off. One more surgery to be certain the infection is cleaned out, that one took about an 3 hrs.
We spent 2 days in a hotel room, then they cut us loose to come home. February 13, one month after I hit Houston, 3 weeks in the hospital. I asked about when and what I could do for PT. I was told to walk, which is okay, but not do anything with my shoulders or upper body until they said it was okay.
We went back in a week for a look over, got the okay to go home, except for the Infectious Disease Dr. He panicked over a fluid pocket and said we'd better be ready to stay, then go, then stay. I told him via my dry erase board to make up his mind or I was gonna shove a boot up his ass, as we had already cancelled my plane ticket. Cooler heads prevailed, they kicked us loose and my daughter Sarah was able to get me a seat on the same flight as before.
Two months later, no word on PT or SLP stuff. Liz raised hell for me and got me freed up for PT and SLP. By then though, my shoulders, neck and back had started to atrophy. I was so weak I couldn't raise my arms over my head.
For all the fabulous care, communication is something MD Anderson really needs to work on. I posted on their FB page that I felt like after I was dismissed, I became a lost child and no one there gave a shit whether I got better or not. I learned that's a fine way to get people off their ass and moving.
Later, Girls and Boys
For starters, let us run back over December for a bit. It was a strange month to me, for some reason. I got my Chemo protocol from MD Anderson set up so I could do that here in Midland. I would rather be home for that kind of stuff, rather than stuck in a hotel room for a once a week treatment that I thought might make me sick.
I asked right off for a Power Port (which has since blown out as we found the 8th of July), but they didn't think I'd need one. Second treatment, I got the port put in. Once again, I was right. Sheesh
I can't recall what I was given except for Cisplatin. That's based in platinum. Heavy metal poisoning LOL! The other two did wonderful things, like make my hair fall out and dried my skin out so badly that my face and neck hasn't gotten over that yet. I look like a snake that really needs to rub it's head on a rock and shed.
It did make me sick as hell. Once again the nausea meds didn't do squat, so I tried an herbal remedy. I can say this for certain. I'd hit the gym for 3 days straight, spend the next day in the infusion room (10 hrs to get 3 drugs in), and the next couple of days being ill. With the herbal aid it went like this. 3 days at the gym, all day infusion, up the next day, puff puff, pass the hell out. Wake up, eat like a pig, nap. Saturday, puff puff pass out, eat like a pig. After that I did fine for 3 days. I can say this, it's not the same type herbs we had back in the day. This stuff nailed my ass to the floor and didn't even say thanks! I lost some weight, but only about 10 lbs. What did happen was severe neuropathy that left my left foot like a lump. I couldn't flex it, or my toes. Unless I wore my lace up boots, I'd trip on it because I couldn't feel it on the ground. Weird
Chemo ends and I go to Houston for a week of pre-surgery tests. I hole up in the Econo-Lodge with some cereal, a pile of microwave food and 4 novels. The novels lasted 2 days, I got tired of microwave food and dined out a bit. I never get tired of corn flakes, though, or Grape Nuts. Go figure.
My bud John Moye showed up on Thursday, we ate like pigs for 3 days, shot pistols, laughed, went to a couple of appointments, and generally just hung out. That was great.
Liz got there on Sunday afternoon. Joe's Crab Shack was happy to see us. We dropped $90 on food, drinks and dessert. Older 2 kids got there Monday. Papadeaux was glad to see us too. Big meal, stopped for snacks and stuff. Hung out that evening. It was the last day I had any solid food, Jan 21, 2013.
We got up and headed in for a 5 AM call time for surgery. By now I'm used to waiting so it didn't take long to get back into pre-op. Got the shots, I don't recall getting wheeled out. We did give them instructions to shake my feet when they try to wake me up. I have a thing about my shoulders, I'll grab or punch if I'm woken up by having my shoulders shaken. Scared Liz once when we were first married. Ooops
Okay! Here's what they cut out the first time:
1/3 or more of my left lower jaw
All of the base of my tongue
Soft palate (it moved there between CT's)
4 lymph glands
Tumor wrapped around my left carotid artery
Plastic surgeon took the big muscle out of the outside of my right quad and stuffed it in my mouth.
That took about 14 hrs. The cancer hid out in different places than the CT showed
Things go okay, I can swallow a bit, still, can't talk for shit because my tongue wonders what the hell they did to it. Something isn't right though, a couple of days in. I smell something odd, and my mouth tastes funny. There's a pulse for the muscle, but I started to question it's health. They poked, prodded and looked but it appeared okay. Until the day they were gonna cut me loose. My head surgeon came in, looked and said I wasn't going anywhere, yet. Damn thing had died. I got hooked up to IV antibiotics and scheduled for surgery the next day. It's odd having something dead in your mouth that you haven't cooked first.
Next surgery! Go in, get the pre-op stuff, head to the table and get Nimbex, a muscle relaxant. It killed me. Apparently a drug allergy I knew nothing about. Anyway, they cut out the dead quad, and pulled my pec out to stuff in my mouth instead.
That took about 8 hrs. ICU for a couple nights. That place is no fun at all.
Back up to my floor and waiting again. Liz has been in my room since Jan 22, and hasn't left. I'm really weak now, and resistant to getting up and walking around like I know I should. I do anyway, whiny about it though. Sheesh.
I can't swallow this time. Pisses me off. My lip and chin are more fouled up, that pisses me off. I can't speak now for shit, that pisses me off. All this was done to keep me alive, and all the cancer was gone, so I got over being pissed off. One more surgery to be certain the infection is cleaned out, that one took about an 3 hrs.
We spent 2 days in a hotel room, then they cut us loose to come home. February 13, one month after I hit Houston, 3 weeks in the hospital. I asked about when and what I could do for PT. I was told to walk, which is okay, but not do anything with my shoulders or upper body until they said it was okay.
We went back in a week for a look over, got the okay to go home, except for the Infectious Disease Dr. He panicked over a fluid pocket and said we'd better be ready to stay, then go, then stay. I told him via my dry erase board to make up his mind or I was gonna shove a boot up his ass, as we had already cancelled my plane ticket. Cooler heads prevailed, they kicked us loose and my daughter Sarah was able to get me a seat on the same flight as before.
Two months later, no word on PT or SLP stuff. Liz raised hell for me and got me freed up for PT and SLP. By then though, my shoulders, neck and back had started to atrophy. I was so weak I couldn't raise my arms over my head.
For all the fabulous care, communication is something MD Anderson really needs to work on. I posted on their FB page that I felt like after I was dismissed, I became a lost child and no one there gave a shit whether I got better or not. I learned that's a fine way to get people off their ass and moving.
Later, Girls and Boys
Saturday, August 3, 2013
So, we left off where Liz breaks down at Palliative care and I ask the Doc how long I've got. I also tell him that this isn't etched in stone and he agrees. We talk about probable causes, which range from the oil field, smoking, drinking, and my favorite, Genetics. If smoking and drinking were absolute causes of cancer, everyone that lit a smoke would die from cancer. That's not the case, is it? Being a reasonable person I know that ingesting smoke into your body isn't good for it, but it's not the root of all evil, either. Our genetic make up goes a lot farther in deciding what we get as far as diseases like cancer go. It's my opinion and if it's not popular, tough shit.
The longest 9 hour drive I've ever taken. Liz and I talk a bit, but not a lot. I'm hard to understand as it is, let alone when I'm just a bit shocked about my mortality. She's putting on a brave face, but it cracks pretty often and is filled with tears, which just breaks my heart. We talk about what we need to do. Things like funeral arrangements, double checking my insurance since I'm on Long Term Disability, and the biggy....telling the kids.
My older two kids, Sarah and Chance have been out on their own a for a while. Sure, they're young still, but they also know a little more about life than the younger two. I can't talk on the phone so I text them. I don't even try to imagine what is going on with them. I do know that they text back calm. I find out later that it wasn't so calm in reality. I'm sorry I couldn't speak directly to them. I think that always helps, hearing the voice stay calm, having that eases the shock a bit, I think.
Liz and I decide the best way to tell the kids is to just tell them out right. It's how I've done everything else, this should be no different. I abhor people that think holding off bad news is best for young people. Being honest, using age appropriate language, is always best. At least have the respect for your kids to be open and honest with the things they should know.
So, here we are, my shoulders and back are on fire, I'm tired, and certainly not looking forward to telling the kids. Addison is my tender hearted baby. She's very talented, and talks a good stoic attitude, but her heart is the softest of the kids. Declan is 15, how do you tell your 15 year old son you probably won't see him graduate high school? Three or four more years down the road and we can ease off father/son and start being friends. That's the magic of parenthood. While you never stop being parents, you can become friends when they grow older and have lives of their own to live. I love that part for sure
It goes like this. Liz gathers up the kids. I have to lean back in my recliner so I can get some relief and glue my thoughts in order.
"Addison, Dec, the Doctors tell me I've only got about a year left." No stunned looks, just instant tears.
From me too. It's the end of the most difficult day I've had. Not hearing I have limited time, but telling people I love that it's short time.
"It's gonna be okay, trust me. We'll have as much fun as possible. We'll figure out what we want to do together, and how this will work. Okay?" Well, fuck no it's not "okay" and I know that. They know that. It is however, what it is. I think Addison may have wondered all along about my mortality, I'm not sure about Dec. Liz still cries, my tears dry up for now. It has, however, just shattered what was left of my heart. I gave it all to Liz and those kids. Now that's broken
Part of me has this "Well, this ain't gonna get it done" attitude about crying. I don't like it, I hate to cry. But it's also human, so I have tears. Sometimes at weird stuff. Other times when I realize what I might miss down the road. What Liz, Sarah, Chance, Addison, Declan and I will all miss together. That's fucking sad. So I leak. We text my SLP, because she's was a friend of Liz and has become a friend of mine as well as an instructor, she cries. I tell my PT 5 days later. She wells up and cries too. Same with my Lyphedema therapist. As well as the manager of my gym. It's tough, I hate it makes them cry, but I'd rather tell them in person than have them find out from the Obits in the paper. They are good folks, they earned a face to face with me at this time. I wish everyone could.
I tell my FaceBook buds. They followed me on this road from November on. They know a whole lot of the pain, joy, victory and defeats I've run over the first part of this road, they are part of my support group. They give me inspiration. They are part of my family too. So are the men and women I work with in the field. A couple of them know, because they are on FB. Next week I go tell the office as a whole. Well, I'll have to use the damn dry erase board, but we'll have a chat none the less.
So far, the "End of Days" stuff is going pretty well. All I lack are the final arrangements and getting the will and Liz powers of attorney to go. Then it's off to having as much fun as I can.
I believe that will include more bike time, gym time, family time. And once in a while, ME time. I'm already tired of this shit, the family has to be, we all need a break.
Sometimes life will hand you a shit sammich. The hardest part of that is the first bite. It won't get any better as you go, but it's easier to tolerate LOL
Y'all hang tough, go play. It looks lovely outside
The longest 9 hour drive I've ever taken. Liz and I talk a bit, but not a lot. I'm hard to understand as it is, let alone when I'm just a bit shocked about my mortality. She's putting on a brave face, but it cracks pretty often and is filled with tears, which just breaks my heart. We talk about what we need to do. Things like funeral arrangements, double checking my insurance since I'm on Long Term Disability, and the biggy....telling the kids.
My older two kids, Sarah and Chance have been out on their own a for a while. Sure, they're young still, but they also know a little more about life than the younger two. I can't talk on the phone so I text them. I don't even try to imagine what is going on with them. I do know that they text back calm. I find out later that it wasn't so calm in reality. I'm sorry I couldn't speak directly to them. I think that always helps, hearing the voice stay calm, having that eases the shock a bit, I think.
Liz and I decide the best way to tell the kids is to just tell them out right. It's how I've done everything else, this should be no different. I abhor people that think holding off bad news is best for young people. Being honest, using age appropriate language, is always best. At least have the respect for your kids to be open and honest with the things they should know.
So, here we are, my shoulders and back are on fire, I'm tired, and certainly not looking forward to telling the kids. Addison is my tender hearted baby. She's very talented, and talks a good stoic attitude, but her heart is the softest of the kids. Declan is 15, how do you tell your 15 year old son you probably won't see him graduate high school? Three or four more years down the road and we can ease off father/son and start being friends. That's the magic of parenthood. While you never stop being parents, you can become friends when they grow older and have lives of their own to live. I love that part for sure
It goes like this. Liz gathers up the kids. I have to lean back in my recliner so I can get some relief and glue my thoughts in order.
"Addison, Dec, the Doctors tell me I've only got about a year left." No stunned looks, just instant tears.
From me too. It's the end of the most difficult day I've had. Not hearing I have limited time, but telling people I love that it's short time.
"It's gonna be okay, trust me. We'll have as much fun as possible. We'll figure out what we want to do together, and how this will work. Okay?" Well, fuck no it's not "okay" and I know that. They know that. It is however, what it is. I think Addison may have wondered all along about my mortality, I'm not sure about Dec. Liz still cries, my tears dry up for now. It has, however, just shattered what was left of my heart. I gave it all to Liz and those kids. Now that's broken
Part of me has this "Well, this ain't gonna get it done" attitude about crying. I don't like it, I hate to cry. But it's also human, so I have tears. Sometimes at weird stuff. Other times when I realize what I might miss down the road. What Liz, Sarah, Chance, Addison, Declan and I will all miss together. That's fucking sad. So I leak. We text my SLP, because she's was a friend of Liz and has become a friend of mine as well as an instructor, she cries. I tell my PT 5 days later. She wells up and cries too. Same with my Lyphedema therapist. As well as the manager of my gym. It's tough, I hate it makes them cry, but I'd rather tell them in person than have them find out from the Obits in the paper. They are good folks, they earned a face to face with me at this time. I wish everyone could.
I tell my FaceBook buds. They followed me on this road from November on. They know a whole lot of the pain, joy, victory and defeats I've run over the first part of this road, they are part of my support group. They give me inspiration. They are part of my family too. So are the men and women I work with in the field. A couple of them know, because they are on FB. Next week I go tell the office as a whole. Well, I'll have to use the damn dry erase board, but we'll have a chat none the less.
So far, the "End of Days" stuff is going pretty well. All I lack are the final arrangements and getting the will and Liz powers of attorney to go. Then it's off to having as much fun as I can.
I believe that will include more bike time, gym time, family time. And once in a while, ME time. I'm already tired of this shit, the family has to be, we all need a break.
Sometimes life will hand you a shit sammich. The hardest part of that is the first bite. It won't get any better as you go, but it's easier to tolerate LOL
Y'all hang tough, go play. It looks lovely outside
Friday, August 2, 2013
Okay, so I've had a bit to organize my thoughts. a bit.
I quit kinda at the end of my first round treatment. I'll breeze through this stuff since it's just leading up to my Terminal Velocity.
Things are cookin along just fine, every CT and exam are coming up clear. I got used to my dentures, worked hard and was getting my strength back. and was having a blast throwing at the Highland Games. I was never gonna win a lot, but I had fun and met really cool people and made good friends out of it.
My dad gets sick, turns out he has cancer and they give him 6 weeks. He does chemo, which makes him really sick, and gets steadily worse. I go to the Midland Celt Fest, and while throwing a light weight for distance, pull my bicep off. I wouldn't have, but some yo yo waddles his idiot ass right toward me while I'm spinning. I get the weight stopped, feel the bicep roll up like a window blind under my arm and hear "that looks like it hurt". If I hadn't been about to crap my kilt, I'd beaten the guy with my good arm.
Dad died right after my bicep repair surgery, pain and grief suck as companions. Funny spot? Why yes there was one. I'm about to give a little speech and toast to Pop, got my beer in one hand, the other in a wrap and useless. Useless until the waitress shoved (honestly shoved, not handed) my burger and fries into my hand that couldn't hold air without hurting my arm. Did I panic? No, I looked at Liz and said, "Gimme a hand?", at which time she started to crack up. It was truly funny, but probably ya had to be there.
Threw a 50th BD party, Liz and I and a couple of friends cooked all day. 15 lbs of ribs, 8 lbs of chicken, beef, and who knows how many lbs of veggies, and 5 lbs of bacon wrapped stuffed jalapeno's. A good time was had by all. I could tell by the empties and the enormous swelling of my head over night.
2011, 2012, John Moye and I ride to Daytona Beach for Bike Week. Great riding with a good friend who enjoys food and drink as much as I. We ride 5-700 miles a day. Meet some really cool people, including an 80something year old guy from Ohio who had ridden his bike to Daytona every year for 60 years. He, John and I teased the boys from within the state that trailered their bikes up, and had a generally wonderful time and ride. I rode home in 2 days. 920 miles the second day. No, my butt was not really that sore, and I wasn't exhausted.
2012, CT in May...CLEAR. Dr appointment in August, throat and mouth still clear. I felt off, kinda like I did in 2008, went to McPherson and had one of my personal best games. Got home and set an appointment with my ENT. She looked, said it looks like it's back, did another needle posy. I go to Austin for a game there, pretty convinced it was back. November 8, get the call that the cancer is back.
My boss helps me get set up for Short Term Dis, so I can get this aggressively taken care of and be back working.
Shockingly enough, my ENT says that I need to go to MD Anderson because I'll need extensive surgery and that's the best place for it. All I need is my Oncologist's referral. Oddly enough he says "Just go to their emergency room, they can't refuse you". We think this is odd, so we gather up every medical record I've got, and that ends up looking like a Funk and Wagnall's Encyclopedia, and book ass for Houston.
We get there and no one has called, nothing. Liz gets on the horn to the ENT, she's in Bally or some such far away place, and takes the time to actually get us a referral so I can get started.
Over the next few weeks and oodles of tests, meeting my surgeon, chemo onco, the radiation folks (which we find, and knew, I couldn't have anymore radiation without risk of death), and a nutritionist.
Chemo, sick, herbal help, not so sick. Tumor started off .5 centimeters, by chemo time it was 2.5 centimeters in 3 weeks.
Go to Houston Jan 13, 2013 to begin a week of pre surgery tests. I'm eating good, because they say I'll get a feeding tube this time for certain. John Moye comes down and spends a bit of time, which was nice of him. We ate, drank, breezed, shot pistolas, and laughed.
Liz gets there Jan 20, we eat, drink, laugh. The 2 older kids get there Jan 21. We eat drink and laugh. This is the last day I have solid food, ever.
Jan 22!!! Surgery day. 8 hr job turns into 14. They cut out my soft palate, the entire base of my tongue, 1/3 of my left lower jaw, 4 lymph glands, and one tumor that wrapped around my left carotid artery.
They use part of my right quadricep to make repairs.
That dies, and the day they are cutting me loose, put me right back in on IV antibiotics and schedule another surgery. Jan 28, surgery to take out my dead quad and replace that with my left pectoral muscle. I code on the table. Fun, no. Feb 5 one more surgery to wash out infection. Feb 13, we come home
2 months later I finally talk them into letting me start PT. By now my muscles have atrophied across my shoulders, neck and back. I love my PT Barb, she pushes me. It's what I need.
We get them to start me with an SLP for speech and swallowing therapy. I love my SLP Michelle, she pushes me and makes me laugh, still. Starting I am 10% understandable. now I'm 65-70% love Michelle.
Okay, we get a date to start reconstructive surgery on July 8. That goes well, except they find a spot near where they found the first stuff. Yep, cancer.
July 17, we meet the surgeon to go over options. No surgery, I've had too much. No radiation, that'll kill me. He mentions Palliative care and Liz breaks down. I have no clue what that is, but if it breaks Liz down, I figure I'm screwed. I ask for a couple of minutes with the Doc and ask how long. He says a year. 40% chance of making it that far with Chemo.
AND THAT boys and girls, is my TERMINAL VELOCITY.
This is where the story goes now. How much slower can I make my Terminal Velocity. We shall see, won't we?
So, this is my first shot at a blog, bear with my old butt for a while and we'll see how it goes.
This is going to be about random thoughts and other things that run through my mind as I speed headlong toward my own end. Hence, Terminal Velocity. As we know, that's the fastest a body can fall through the air with any given resistance. I intend to resist this end to the best of my ability.
Everyone's Terminal Velocity is different. The Docs say about a year, better odds of making it that year with Chemo. I find out more about that next week at MD Anderson, again, for a Chemo consult. They should also have seen how sparkly I lit up the PET scan last week. I'm hoping it's not like the as bad as the rhinestones on a Liberace costumes.
So, let's set the scene, shall we, buy going back almost 5 years to my first diagnosis and working rapidly forward.
Labor day weekend 2008 I'm in the LK (Liberal Ks) visiting the old man. I got wet on the bike, which is nothing new, and the day I'm gonna leave I find this swollen gland. Which wasn't right, it wasn't sore and it was only one on the left side of my jaw. Get home, see a Dr., immediately get a referral to an ENT, who does a needle opsy in her office. Ow.
Comes back cancer. I've go to McPherson to throw in a set of Highland Games, and can see the damn thing bulging in my shadow, oddly enough, so can everyone else. Secret is out. A week later I'm in seeing a Radiation Oncologist and a Chemo Therapy Oncologist, and getting a much bigger biopsy, a throat scrape, ultra sound (the tech asked "You gettin dizzy?" No. "Funny, it's got your left carotid artery almost flattened out"), and a plan is set.
On the table getting my Power Port put in, the nurse keeps bugging me, "Mr Smith, are you okay?", why yes I am, "You're pulse is 62, we were worried". Sheesh. Port goes in next up, Chemo!!
Cisplatin, Toxerol, and 5FU, which is pumped in over 5 days. Sick SOB, so sick I even made the dog gag. Can't keep anything in. Weight loss begins. Two rounds of that and a short stay in the hospital because I even threw up water and was so dehydrated they thought I was gonna die. Radiation begins!!!
Build a mask to pin me to the table. 40 trips in, 180 centigray at a pop, all around my neck. I refused the feeding tube, told the doc I could eat enough to keep my weight up. It turns out I lied. No way in hell I could eat enough. Every treatment my throat got more raw, I got more tired and mean, because they were giving me steroids too, after I told them it was an error. I'd eat like a pig, lose more weight.
Too much weight they said they'd put me on a feeding tube. My solution? Wear heavy clothes and put plates I borrowed from the gym in my biker jacket. I ended up with 20 lbs in the pockets, barely stayed above the minimum weight before they forced me to get a tube. Last treatment, talked to the Dr, told him I ate 2 bowls of chili with a splash of tobacco. I did, it hurt, but was great.. Wore my kilt to that last bake me session too.
Throat kept baking, I got down to eating nothing but applesauce and Snak Pak pudding. I'd kill to eat either one of those now LOL
Many things happened in that time, including getting a new motorcycle as a "I kicked it's ass" present. Fat Girl and I went many places, very fast LOL
Cool shit leading up to Terminal Velocity:
New Bike
Scarborough Ren Fest Highland Games made me Special guest for the day, had given me a room, and formed a cheering section for me. Almost most made my eyes wet. Okay, it did, not just in front of everyone. Mike Baab gave me his Athlete of the Day medal. I met cool people that are still good friends, over a jar of olives
30th HS reunion. Reconnected with a whole herd of people that still stay in touch.
2 trips to Daytona Bike Week with my bud John Moye. Yes, we ride, we do not trailer.
Hundreds of other things that were either balls to the wall or just an absolute riot. Why? Because, dammit, either live life large or stay at home and whine about what you coulda done! I don't like whining.
Okay, that's a wrap on the first one. Next time, after some thought, we'll jump into getting the same cancer again in the same fucking area at almost the same fucking time of year. Yippee!!
Adios
This is going to be about random thoughts and other things that run through my mind as I speed headlong toward my own end. Hence, Terminal Velocity. As we know, that's the fastest a body can fall through the air with any given resistance. I intend to resist this end to the best of my ability.
Everyone's Terminal Velocity is different. The Docs say about a year, better odds of making it that year with Chemo. I find out more about that next week at MD Anderson, again, for a Chemo consult. They should also have seen how sparkly I lit up the PET scan last week. I'm hoping it's not like the as bad as the rhinestones on a Liberace costumes.
So, let's set the scene, shall we, buy going back almost 5 years to my first diagnosis and working rapidly forward.
Labor day weekend 2008 I'm in the LK (Liberal Ks) visiting the old man. I got wet on the bike, which is nothing new, and the day I'm gonna leave I find this swollen gland. Which wasn't right, it wasn't sore and it was only one on the left side of my jaw. Get home, see a Dr., immediately get a referral to an ENT, who does a needle opsy in her office. Ow.
Comes back cancer. I've go to McPherson to throw in a set of Highland Games, and can see the damn thing bulging in my shadow, oddly enough, so can everyone else. Secret is out. A week later I'm in seeing a Radiation Oncologist and a Chemo Therapy Oncologist, and getting a much bigger biopsy, a throat scrape, ultra sound (the tech asked "You gettin dizzy?" No. "Funny, it's got your left carotid artery almost flattened out"), and a plan is set.
On the table getting my Power Port put in, the nurse keeps bugging me, "Mr Smith, are you okay?", why yes I am, "You're pulse is 62, we were worried". Sheesh. Port goes in next up, Chemo!!
Cisplatin, Toxerol, and 5FU, which is pumped in over 5 days. Sick SOB, so sick I even made the dog gag. Can't keep anything in. Weight loss begins. Two rounds of that and a short stay in the hospital because I even threw up water and was so dehydrated they thought I was gonna die. Radiation begins!!!
Build a mask to pin me to the table. 40 trips in, 180 centigray at a pop, all around my neck. I refused the feeding tube, told the doc I could eat enough to keep my weight up. It turns out I lied. No way in hell I could eat enough. Every treatment my throat got more raw, I got more tired and mean, because they were giving me steroids too, after I told them it was an error. I'd eat like a pig, lose more weight.
Too much weight they said they'd put me on a feeding tube. My solution? Wear heavy clothes and put plates I borrowed from the gym in my biker jacket. I ended up with 20 lbs in the pockets, barely stayed above the minimum weight before they forced me to get a tube. Last treatment, talked to the Dr, told him I ate 2 bowls of chili with a splash of tobacco. I did, it hurt, but was great.. Wore my kilt to that last bake me session too.
Throat kept baking, I got down to eating nothing but applesauce and Snak Pak pudding. I'd kill to eat either one of those now LOL
Many things happened in that time, including getting a new motorcycle as a "I kicked it's ass" present. Fat Girl and I went many places, very fast LOL
Cool shit leading up to Terminal Velocity:
New Bike
Scarborough Ren Fest Highland Games made me Special guest for the day, had given me a room, and formed a cheering section for me. Almost most made my eyes wet. Okay, it did, not just in front of everyone. Mike Baab gave me his Athlete of the Day medal. I met cool people that are still good friends, over a jar of olives
30th HS reunion. Reconnected with a whole herd of people that still stay in touch.
2 trips to Daytona Bike Week with my bud John Moye. Yes, we ride, we do not trailer.
Hundreds of other things that were either balls to the wall or just an absolute riot. Why? Because, dammit, either live life large or stay at home and whine about what you coulda done! I don't like whining.
Okay, that's a wrap on the first one. Next time, after some thought, we'll jump into getting the same cancer again in the same fucking area at almost the same fucking time of year. Yippee!!
Adios
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