Gentle Ben he ain't

  The night before.....

 Here it is the night before my teeth get pulled and I’m trying not to think about it. Yeah, that’s like someone telling you not to think about the elephant in the room. Gee thanks, now that’s all I can think about. They‘re gonna pull 15 teeth !! 3 Wisdoms !!  Holy Mother of Terror !! Somebody better have keys to the pharmacy. 

 D-Day

 I couldn't sleep much last night and was expecting to sleep on the way over. This was not to be. Checked in at the front desk. The people at the front are always very polite and courteous. Not so much in the back. I think they may be payed by the procedure. I know one dental technician said that she was. I don't know about the Drs. My appointment was for 8:00 and I was 15 minutes early. At 10 after they called me to the back and put me in a chair, or as I was soon to know it, the torture seat. The Dr. came in and said he was going to shoot me up. I assumed ( and we all know what happens when you do that ) that this would be the worst part. He explained where all of the nerves were and where he was going to be shooting me. Had I known then what I know now I might have asked for just one shot- a 22 to the left ear. About 15 shots throughout the area including 4 in the roof of my mouth. OMG !!! I thought he was going for the brain. It was clear to me now that the Angel of Mercy was quite busy with someone else or was on break or something. He came back in about 7 minutes later and started poking around and asked if I could feel anything sharp. On one I could and he shot me once more. He then said he was going to get a little aggressive.Well if that was a little I don't even want to be in the area when he gets really aggressive. The tech would hold my jaw and suction as needed. He would grab a tooth with some instrument and start working it side to side. Then I would hear it crack and he would throw it in a tray and go for the next one. The cracking was both teeth and bone. When he finished with an area he would grab a small file and file the spurs off of the bone. Then he would sew the gum up around the war zone in my mouth. Long before it was over I had tears running down my face. And when it was finally over I looked at the clock. Almost an hour exactly since he started. I think he was either going for a record or for bragging rights for the day.

 At least I thought it was over. The nurse asked if I wanted a wheelchair and I declined. We went back up to the front to check out. I told Teresa I was going to stand in the hall so the rest of the people wouldn't get scared by looking at me. She checked me out, but when she came out to the hall she said" Oh my God your bleeding." My mouth was still numb so I couldn't feel the blood running down my chin and onto the hallway. She quickly got me some Kleenex to catch the blood and told the woman at the desk what was going on. They got me into the back again and back into the torture seat. A different Dr. looked at it and said I needed more sutures. He started shooting me up again and AGAIN 4 in the roof of my mouth. Now not even waiting for the stuff to take effect he starts to oversew the previous stitching. All the time talking to me like I was an idiot. HEY DOC, I'm not the one who did this! Talk to your buddy in the next room. Then they tell me I must keep biting down on the gauze they have stuffed my mouth full of. Hmmm. Kind of tough to bite down when you can't feel anything.

 When we left this time I didn't fight them about a wheelchair. I was #@!*!! miserable. They told us to change out the dressing about every 20 minutes or so. Let's see. An hour and a half drive back home with over an hour of it highway. Oh yeah honey just pull over on the shoulder here and we'll do that. We got over an hour of the trip done and stopped in a shopping center way away from everyone else. I opened the door and stepped away from the car, bent over and opened my mouth. An entire mouthful of saliva and blood came pouring out and seemed to just keep coming. I had refused to swallow any more of it than I absolutely had to to keep from having it run down my face. The salivary glands were doing their best to keep everything washed out. I finally got to a point where I said just repack it and Teresa did. We got back in the car and finished the trip. As son as we got to the house I made a beeline for the bathroom and repeated that whole process. After about another hour we changed it again and things seemed to be settling down. Somewhere around 10:00 PM I took out the gauze and left it out trying to see how much I was still bleeding. It wasn't much so I decided to leave it out. I slept sitting up in my chair till about 5:00 AM because I didn't want to take a chance on slobbering out blood on my pillow.

 This is Thursday and I haven't had any solid food since Tuesday night. Today I have had liquid Advil through my PEG tube and a lot of water to keep from getting dehydrated. The pain level is actually fairly low, but the swelling is still pretty big. I can talk, but it helps to know what I should be saying.

Next appointment - March 5th  Radiation Oncology

Hey PEG, What’s for dinner?

  Thursday I got a PEG tube. This is a rubber tube that has a small portion that goes through your abdominal wall and a larger portion that stays outside for feeding. The internal part is installed by opening the abdomen with a small incision, passing through to the stomach. It is guided by an endoscope that they have run down you earlier. I was hoping to be out for all of this. But this was not to be. The first inkling I had that “everyting ain’t gawn be awreet” was the plastic thing they put in my mouth with a strap that went around my head. This is to keep you from biting the endoscope tube to stop it from being shoved down your throat. The next thing was when they strapped my hands to the side of the bed. That was probably a smart thing considering what came next.  The endoscope was then passed through the plastic thing in my mouth and down into my throat. All the while I was gagging they were saying “Just concentrate on your breathing”. Had I been able to talk there would have been quite a few expletives. Mercifully when it got into my stomach they said “Let’s give him a minute” and they finally dosed me with something to put me out.

 When I woke up I was back in the holding room with what felt like a gunshot to the stomach. The only other thing I can liken it to is possibly being kicked in the stomach by a mule.

  Friday I went back to the clinic to have it checked out. The Dr. took the dressing off and started to adjust the bumper. This is a round piece of plastic about the size of a fifty cent piece that sits against the skin to keep the tube from going inside you anymore than it is. To adjust this the Dr. must grab the tube with a pair of forceps while holding the bumper and push the tube through it. Now as simple as this sounds, and it really is, pushing and pulling on a fresh wound is not the thing you want to do. And just about the point where I was about to come up off of the bed and deck him, he was through. Then he redressed the wound and flushed the line. He also gave me some information that no one else had and that’s that the line needs to be flushed every day. I've found that information is something that you get from the least likely people that you would think would have it. And the people who should be giving it must think that they have already given it to you. I can only presume that with all the people that they see that it's hard to keep up with what they have told YOU.

When I start using this thing first you flush it with one syringe of water, then pour in x number of cans of supplement, and then flush it again with more water. The X will be determined by the nutrition clinic. We have actually gotten the supplement already and are waiting for the other supplies.

These supplements are how I will get the “food” to keep going. I’ll be on a 2600 calorie a day diet. I’m encouraged to eat as much as I can by mouth as I can while I can. And now the X factor has been figured out to be 5 ½ cans a day.

Wednesday the 26th, pull teeth

Dr. I. Won Feelgood will see you now. Won't you come in ?

 It's Tuesday and I went to dental surgery for the initial exam.Fifteen teeth to be pulled. In January of 1987 I had a truck wreck where I went off of a bridge. That took care of most of the rest. I still have three of my wisdom teeth and the dentist back in '87 said I have some of the longest roots he had ever seen. I asked today if they were going to put me out and he said no. They were to concerned about my airway being blocked so it would just be local. ( I need a fifth of Diazepam stat !!!). The dentist in '87 took 2 1/2 hours to pull five teeth that were too broken to save ( the rest having been left in the snow and asphalt in Kansas). Hmmm.  15/3=5   5x2 1/2 = 12 1/2. So I'm hoping and praying that something goes right and I'm able to get out of that chair before dark. No eating or drinking after midnight. I hear that before almost every procedure, but the nutritionist says I need to fatten up before I start radiation.
 We left the dentist and went to the ENT clinic to talk to them about my pain. It's been three weeks since my tonsillectomy and I still have a hot spot in my throat. The Dr. there said that it was the cancer coming through into my throat. So after a quick look in my mouth to confirm this, the Dr. ordered more pain meds and told me in no uncertain terms that if I wanted to manage this pain I must take it AS PRESCRIBED. After a knowing glare from the Dr. ( I think that they think that I think I'm the man of steel or something ) I promised I would. This pain is like a glowing red hot steel ball or sometimes just as if they had scraped it with a scalpel on the side of my throat. And God help me if I drink something cold. It's like an ice cold nail that goes into my neck an inch or so and then goes straight up into my brain. Man of steel be damned, gimme the damned meds.
 Next stop was nutrition to let them know we had received the nutritional supplements, but no syringes to put the stuff in. They said they would give me a few from the pharmacy if they didn't show up soon and then they would reorder. Teresa asked her what would happen if some liquor was to wind up in the tube ( she knows me all too well ). They assured us that it would not damage the tube but to be careful what meds are mixing with it and to check with chemo when I get to talk to them about alcohol in general.
 Then we went to radiology-oncology to find out when I might be starting that. Half of the office was out so the nurse took our phone no. and called later to say I was set up for Mar.5th for the initial exam. There they will measure my head to figure out exactly where to aim the glow in the dark machine. I've been told that if the chemo doesn't get my hair the radiation damn sure will. At least in the area to be irradiated, and if it ever comes back it will be around five years. Thankfully it's on my neck and not in the middle of my head. I remember what I looked like in basic training after the buzz cut and it's not a good look on a big white guy. Looks more redneck than anything.
 Last stop was the pharmacy and after an hour wait I picked up my meds. The ENT doc had asked me if I wanted pills or liquid for the hydrocodone and I had said liquid. It coats my throat and gets to the source much quicker. And believe me when you're putting out this fire you want it out now, not in 45 minutes. The liquid comes in a 16 oz. bottle and I wound up with three of them and some stuff they call Mary's Magic Potion. I'll let you know just how magic it winds up being.

 Thursday    PEG tube installed

They said What?

 Well, I found out about it making a phone call to the VA. I had recently signed up (or more correctly a good friend had signed me up) for VA medical benefits since I'm getting to an age when one starts to pay for the decisions he made in his youth. We had gone back out on the road for our first trip of the year. The co. we lease to had arranged a round trip back to home so that we could be close to home in case the VA wanted to run more tests. I'm still not sure exactly what was said, but the jist of it was " Well you have cancer." (There were other examples of the VA informing me of things a little less than tactfully)
 Ummmm. Uhh  whuuu? Well thanks. Not a death sentence, but not real far from it. At least that's the thought running through my head ever so often. The one thing for sure is I can't go back to work till this thing is whipped or under control. The Dr.s appointments are too close together to be able to do anything of any consequence. And that's enough to drive me looney not being able to go much of anywhere except the back yard on good weather days. Cold or rainy it's TV or computer. ALL DAY, ALL NIGHT.
 But this blog is hopefully going to be an outlet for some of my feelings as well as let others know how I'm doing.
Currently my feeling is good about the outcome. They've moved fairly quickly with treatment although I still don't know the start date. But several things have to occur first.Next Tuesday I see a dental surgeon. Another one of those less than tactful notifications. "Your going to have to have all of your teeth removed because if you don't, they will all turn black and rot and fall out and hurt. And if you think you're going to wait till then, think again. You could quite possibly get a broken jaw since the radiation will weaken the bone. You're going to get a feeding tube put into your stomach since you won't be able to swallow much less eat."
  Hmmmm. Is there ANY good news? Well till I start the actual chemo part my diet has turned into Nutrisystems worst nightmare. Heavy cream and real butter, steak and potatoes, avocados, and pretty much anything that might fatten me up before I start. Now anyone that knows me or even knows of me knows I'm not a little guy. I'm 6'9" and 235. They took out my tonsils 3 weeks ago and I lost 10 lbs. from the limited liquid diet I had for about 16 days. I've since gained it back, but the nutritionist was worried so she sent the supplements early. This is the stuff  I'll have to put into the feeding tube for nutrition. I'll leave out some of the information they gave me mostly because it's either gross or borders on it. Let's just say I will have great difficulty swallowing for quite a while.
The dentist said I won't get plates for several months due to needing to heal from the chemo etc.

Tuesday           See dental surgery
Thursday          Have PEG feeding tube installed