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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