Friday, January 15, 2010

1-15-10

  Slept so-so last night, started to post but didn't. It got late quicker than I thought and I was worn out. My throat felt like it was swollen inside but nothing like tonight. Over the last few days too I've encountered a few people with throat cancer that they thought were cured only to find out they wasn't. That is just a bit depressing so I didn't write.

  We arrived at UT at the regular time but the waiting room had a few in it already. We sat for a while and waited as the computer had to be shut down and restarted. I still haven't seen the lady that has throat and mouth cancer, I know she wasn't through yet. The other lady that comes with her husband asked if we had seen her or the young man that has throat cancer in a while. They are there before we get there. The guy with a beard who goes after me said he hasn't seen either this week, except maybe Monday. I know the lady with throat and mouth cancer had to take a 2 week break at the same time that I did and I know she lacked as many if not more treatments than I did.

  After we were done with the treatment I took Ruth up on her offer for an IV for fluids. Me and Charlie walked over to the Chemo Hut and then Charlie went back and moved the truck from the parking lot where we park for radiation to the parking lot where the chemo is. I took 1 bag, maybe should have done 2 but I decided not to. I felt a lot better after the one. I believe that I was getting dehydrated. It's pretty common for me to have night sweats. Funny, this is the first time I've bruised from the IV. Ruth gave me a prescription for more pain patches. We will get them filled tomorrow.

  While in the Chemo Hut I met a man who was doing his first Chemo with his wife at his side. He has throat cancer too yet he never smoked, no acid reflux, and no alcohol. Charlie and I told him what those who told us to use. gave him tips on lotions, drugs, numbing agents, moisturizing mouth sprays, and staying away from eating with anything metal. He was fast asleep when we left. The guy was in good spirits and a good sense of humor, I think he will do fine. He was like me when I first started this, a bit on the heavy side. He said he loved to eat. I didn't tell him that eating would soon be a chore and not a pleasure.
    
 Charlie and I went out shopping, but we didn't buy anything, lol. Harbor freight and Northern Tools. Then since we missed breakfast we hit Shoney's buffet bar. While food has very little taste, I still remember when it did have taste. It is hard to explain to someone that everything either tastes bad or not at all. Eating is just merely something you do to survive. I love the "what do you feel like eating?" or the "what would you like to eat?" question.  

 Denise noticed that my outside throat, especially on my left side is almost like it was when I went to the hospital. For the last 2 nights I've been dressing my neck myself so this was her first close up look at it in a couple of days. The treatment is quicker but focuses maybe even more intense on just a fewer areas. Tonight, even more so than last night I'm having difficulty breathing from the swelling inside my throat. There is a lot of mucus and or thick saliva coming out I have to spit up. Tea is still acceptable and water, but not too cold with pain. It takes that third swallow from a sip to get past the gag reflexes, least you get choked. One sip, two swallows then a third. 

  Anything that is below room temperature is like fire when it goes down yet Denise says cold will take down the swelling. The outside pain is not too bad and the pain patch is managing it fairly well, the inside however is another story. I've been having to take 1/2 the Endocet every 4-5 hours to manage it. It's hard to sleep because you feel like your throat is going to shut off. The bleeding from where I cracked my throat open however has finally stopped. Swallowing is still fairly manageable. I've taken some Benadryl and biotene, occasionally using the Lidocaine, especially if it's a very cold drink. The outside of my throat is throwing off quite a lot of heat, not to mention the skin is once again coming off. These are deep burns again, a bit deeper than I expected.

  I have 4 treatments left, surely I can finish the 4. Talk about coming full circle again. Before I was diagnosed I fought sleep from fear I wouldn't awake, now I do the same thing. I've got an oxygen tank out in the Sunroom and I use to sneak out a catch a few breaths of it. I think tonight I will do it again. It's almost as if you are smothering even though you are breathing. Like breathing through a collapsed straw. I've tried nose and mouth breathing, still the same. Thank God I have a two day break yet it does make me wonder. If what the do today I get the effects the next two weeks, I am about to be in for a rough month.

   Me and Bill went out later this evening and I bought another camper top. The cold air felt so good on my throat. I'm wondering if maybe a cold compress should be applied to the outside of the throat to reduce the swelling of the inside.

  I've got both humidifiers running wide open as usual.  Keep a chair pushed up to my bed that has water and an empty water bottle to spit in, along with the biotene. I'll be up and down through the night spitting, drinking and warding off the pain of waking up with a dry mouth and throat. Panella was quick to explain that the dry mouth was one of the worse side effects often overlooked when doctors or people tell about their experience. It is one of the worse side effects there are. This isn't a I'm thirsty dryness, it is an extremely painful dryness. Usually it isn't lasting but for some, it never goes away. I pray that it will not be permanent. Since I've lost most of my muscle I can see the damage and scars from my shoulder surgery. It's kinda freaky seeing how much difference there is between the two arms. Now I know why my left hand stays numb and my arm only works in certain ways. The muscles that had developed to compensate for the damage are wasted and fat that was around it.     

  I've had a lot of fatigue this week going in and out of it. For the first time in a while some depression. I still get these nervous jerks, muscle twitch, or whatever you call it. My body is beginning to break out again like it did with the last chemo and it's getting hard to tell the break out from the Non Hodgkin's Lymphoma patches. I drove to the office for the first time yesterday but probably won't do that again for a while. These sudden sleepy spells comes over me and then there are sometimes double vision. I've learned mostly how to deal with the double vision, I've had that hit over the last 5 years so that I have a lot of practice at getting through them. We've never quite yet figured out where that comes from.

  I can see and feel my threat of not waking, similar to what happen to my father, just as he knew it. That is why I try and make sure that my last words are kind and I tell those I'm talking with I love you every night. I end my conversations with my kids and parents with I love you. I've come to realize the meaning of what my great grandmother use to say about not letting the sun set down on you with hard feelings. To always make peace before you go to bed, and never go to bed angry. Thing is, that holds true for all of us. The difference is that I have a physical condition that make that very real and reminds me, but the sad truth is that we are all subject to not having tomorrow to make peace, to not make amends, to not say what we needed to say. Hopefully we all go to bed and end our conversations with family and loved ones with I love you, just in case tomorrow never comes.        

Wednesday, January 13, 2010

1-13- 10

I apparently set my alarm clock on daylight savings time and at 4:45am I awoke and freaked out because it said 5:45am. I ran into Denise's room headed for the closet and went and brushed my teeth. Denise pointed out my clock was wrong and after checking other clocks in the house... it was, lol.

  Today was suppose to be the start of the short ones yet one of the other girls said yesterday was. Funny but they don't seem any shorter. On the outside my throat looks a lot better than the last time but on the inside, it is horrible again. It feels like my throat is closing off again and where I cracked it open it is very painful. It did finally stop bleeding though. I've went from worrying about this pain patch to adding 1/2 an Endocet to my day 3 times a day. Kim has relieved my fear on the patch and I believe she is correct, I'm benefiting more than I know from wearing it. If all goes well, the Thursday after this one will be my last treatments... Thank God.

  Picture Strep throat, now multiply that. That is what this feels like. Each day gets a little worse. The cracks are getting better though as Kim suggested that I go back to doing the Miracle Mouth Wash regularly. It does burn a bit but maybe that shows it's helping.

  I have went back to room temperature water rather than cold. Cold water is producing too much pain. Smaller foods like rice are off the list again until these cracks heal. They are big enough to harbor some of the small grains which leads to coughing them up.

   I've used a tom of Biotene lately as the saliva glands have all but quit with regular secretions and have gone back to a thick mucus like secretion. Especially before treatment. While you are strapped down the last thing you want is a dry mouth and suddenly want to swallow, and there is nothing there to swallow to moisten the throat. I read on another throat cancer blog that sometimes they have to stretch your throat again and remove scar tissue. Hopefully that will not be the case here.   

   We've broken the ice with the man with a beard in the waiting room now. It's took a while but between Charlie and me he now speaks and smiles. No more long faces and silence. I believe he is going to be alright now.

Tuesday, January 12, 2010

1-12-10

  Early again but not as cold. Charlie and me went got to UT in plenty of time again today even though we killed a little time this morning.

  It was a short treatment and went well. I met today with Dr Green and asked about the feeling I had cracked open two places in my throat and told him it bled, not a lot, but still bleeds some. He said it wasn't unusual for that to occur since my saliva glands aren't working as they should. He wasn't too concerned so I guess that it will be ok. 

  My throat is getting tighter and tighter inside and more foods and drinks are taken off the do list each day again. It's painful to eat and talk again, but I knew this was coming this time. Me and Charlie still managed to eat a big breakfast afterward at Shoneys while I still can. They always remember my plastic silverware to eat with.

  Coming back home, the cocktail was in full swing and as I got warm in Charlie's truck I began to get sleepy, think it was the drugs and a full belly. I slept until the phone rang today until 1:30pm, lol. Now approaching 11pm, I'm ready for sleep again. Must be the radiation.

  I thought I'd post and I looked for an email from Sally, but didn't see the email. I always look forward to getting emails from Sally. We made friends a few years back from the Lymphoma board. Sally is a great lady and has been an excellent friend. Denise always looks for her email too. Even though we've never met face to face I consider her to be one of my best friends. She is very tough to have gone through what she has gone through and remain so positive and caring.

  There still wasn't many that were there early this morning which was a shocker.  

Monday, January 11, 2010

1- 11- 10

I couldn't get to sleep until about 2am then at 5am I was back up. Once again we head into the eye of the storm. I hadn't placed the tank properly back on the humidified last night and it blew dry air. I woke up several times with a dry mouth and pain. I kept using the Biotene and the Lidocaine.

  We left and even though I took my cocktail at the regular time, it didn't take effect until I arrived home. I freaked out during treatments but managed to get through it. I'm sure that by now Charity must think I'm a nut because every time she does the treatment is when things go wrong. Although she was nice to me. The stops were long today, longer than I remember them being.

   Cindy was already at Easy In this morning so we stopped there and I bought a Cinnamon Bun (something like that) which gave me something on my stomach in order to take the pills. Charlie got his first cup of coffee. Me and Charlie went to Shoney's to eat. I managed to get a plate full ate plus a bowl of biscuits and gravy.

  No sooner than I hit the house I was in la-la land. I answered some emails but haven't a clue which ones or what I said. I crashed on the bed for about an hour, then another hour. It took the biggest part of the day to get back online mentally.

  My throat is still bleeding inside a little and every once and a while it feels like the cut opens up that sends a pain across my body. It seems hard to get my breath at times and getting choked only takes not noticing where my saliva is... what little I produce these days. It is getting a bit scary again and feels much like when this all started, only this time it is on my left side of my throat and what feels the small opening and where we breath from. It tends to get on ones nerves. Denise had me take one of the nerve pills after a while of debating, I did. It did calm down the anxiety.

  We walked up to Misty and Matt's for Brandon's birthday party, but I didn't stay long. Happy birthday Brandon, he is 8 years old.

  Today Gatorade is pretty much history again. Now we go back to water and maybe tea for a bit longer. The pain broke through enough tonight that I resorted in taking 1/2 an Endocet even with the patch. Still not much relief. Just finished doing the Miracle Mouth Wash. It does help some, but it too burns. Took two more Previcid, I seem to have a lot of acid reflux again starting up.

  I keep telling mysel... just 8 more treatments... 8 more.  

Sunday, January 10, 2010

1-10-2010

  Man is it cold. I woke up several times last night with my mouth dry. This morning it was dry again and it is still bleeding a little from cracking open inside. The outside though looks great. I used the Blue Emu Oil on it over the weekend and tonight went back to the Miaderm radiation cream.

  We went to mom's for lunch. A definite no-no is chicken and dumplings. I got choked pretty back and had to leave the table, thought I'd never get it dislodged. It must have been at least 10 minutes and was embarrassing as it was the first look they had seen at me eating and getting choked. My brother, his wife and daughter kind of didn't know what to make of it. I'm just guessing here but I'd say that eating out and eating what I want to is again a thing of the past for a while. I tried Coke and it was like fire so no more soft drinks. This was to be expected though.  I really didn't want the Coke but I knew I could use it for a gauge to see where I am on the raw scale. 

  I can still (knock on wood) enjoy my Gatorade, milk, tea and water. Unexpected though is the weird taste of food this time. I wonder what I will crave this time, lol. I'll have to go back to soft food, but I have only 9 more treatments left and then it will take a couple or more weeks to go back down the pain scale. I think Green said that what they do this week has an effect next week. Tomorrow should be the last of the long treatments as they finish up the X-rays, then treatments should get shorter. I thought about a friend I had years ago that was a paratrooper in Viet Nam and what he said about parachuting. He said he was scared the first time he jumped out of a plane. I said that he probably was ready the next time and just dove right out. He said that the second time they had to kick him out of the plane. He laughed and said the first time he didn't know what to expect, the second time he knew what was coming.     

  Denise fed the cows and then the sheep, llamas, and goats. While I miss feeding them, It would be a lie to say I miss it when it's this cold. To remind me just how much fun it is though, Denise made sure when she got back to put her cold face on my bald head. It was cold enough the tractor didn't want to start, sucked the battery too low again so I took Big Ugly and boosted it off and got it started. I've been dieing to drive it since it has the steel bed on it, even if it was just across the driveway, lol. Plus I bought a new tool at TSC and it gave me a chance to use it, lol. I done a quick MMR report for Chase for mom to fax in. If Sandra is reading this, HI, and I'm still making sure everything is ok. Hopefully you will continue to do business with mom and I'll help her learn the way to do your foreclosures.

  A big thanks to Kim for her friendship and help tonight. I can't tell you what a positive difference you have made throughout this.    

Saturday, January 9, 2010

1-9-10

  I woke up late this morning with Denise asking me where the log chain was and that Bill was waiting. I took a sup of water which I didn't swash around well enough trying to hurry and answer. I cracked both sides of the inside of my throat open. It bled for a while and is still sore but not bleeding. Lesson learned. No matter how much someone is rushing for an answer in the morning, wait until you get your mouth and throat lubricated. I usually start out every morning with water, swishing it around and slowly swallowing, three or four times and if it isn't lubricated enough then I use biotene mouth spray. This is an over the counter product and if your pharmacy doesn't stock it, ask them to get it.

   My throat is swollen up again and coke or anything like that, including Chili is again, out of the question. Baby food may be yet back on the menu, definitely soft, bland foods. I also used for the first time in a while Lidocaine 2% Viscous.  

  We went to town to deposit a check that was due me last year but the closing company forgot to send it, then forgot that they forgot it. We ate Japanese which was good but the radiation and or chemo changed the taste of the shrimp sauce. The rice kept getting stuck in my throat too. That use to scare me and freak me out but after months of it, you learn to keep calm and work it back up. We started for Walmart but they were too busy, too much chance of infection. We went to Newport to get cat food then came back and found we needed chicken food, so off to Tractor Supply we went, lol. It was nice to g out and go somewhere other than UT for a change.

  Now Annie and Megan are sick, but like flu sick. I've felt so-so and just in case, I'm staying in my end of the house. I've only 9 more treatments! Then on the 22nd we go see Dr Panella again. I'll run out of these pain patches in a few more days but I have Endocets left and hopefully can ween off them. Kim, if you are still reading please let me know how many days I need to do the Endocets so that it will lessen the chance of DTs.  I will be so glad to be off pain medicine, yet I know I couldn't have tolerated all this without it. I think the worse is the Morphine and the patch though. I pray I never have to use these again. 

   Cody brought back Big Ugly with the new bed he installed and made for me.... it looks great. I may even have to change it's name now, lol. It ain't as ugly as it was. He done an excellent job on it. The headache rack he made and he had to re-fabricate the size of the floor and the rear of the bed to the bumper. He even put recessed tail lights in it! Mood lifter. He charged a reasonable price too for all that work. Charlie found one of the old bottles that Denise used to put my cocktail in, it had 2 pain pills (I usually carry them there just in case). He thought I needed it so he brought it back here in the cold.  

  The man in his 60s is still on my mind. Charlie had talked with him and his wife while I was in treatment Friday. He has had 9 so far and he said he couldn't do it. His wife said that he was giving up. He told them about my blog and if they are reading this, please don't give up. It will get worse... a lot worse, but then it will get better. The brief talk we had, you are looking at me at my best I have been in months. I probably look like I've been rode hard and put up wet, and seemed energetic, but I started out where you are. You can do this thing but not alone. You've a great teams of doctors and family and more importantly... God. Just remember to P.U.S.H. Pray Until Something Happens. It will not be easy but it will be worth it. Just look at where you were, where you are, and where you will be. If you ever need a shoulder then call me. Denise gave you my card. 24/7, anytime you need to talk.     

Friday, January 8, 2010

1-8-10

With the snow last night we decided to leave late, maybe 7:30ish, that way it would be light enough to see the road condition. We got down there and the waiting room was empty. We waited maybe 10 minutes before I got called back. I timed my cocktail just right.The snow was beautiful.

  The ladies there said that I would have one more session like the other ones and eight more shorter ones as they focus the beam even more concise. Today's session took about 45 minutes. I told them about Dr Rathfoot looking into my throat and while swollen three times the regular size, no tumor. They were tickled for me.

   Charlie meanwhile sat in the waiting room where the older man that Denise had talked with him and her husband and gave them some tips on stuff to use. The man's wife told Charlie that he was about to give up after just nine treatments. That is how rough head and neck radiation is. Charlie gave them a pep talk and believe me, Charlie is good at that, they have worked for me. He told them that I had almost given up several times but they wouldn't let me. His appointments are later than mine so I may never see him again. That made me think of like an outline form of things I've used that have helped me. Head and neck radiation is suppose to be the worse places to get it.

  Again today I didn't shave. I have hairs starting back on my face but where the beard was, it is doubtful that I will ever be able to grow any hair there again... and that is ok. 

  I've slept on and off all day. I think I may have over eaten at Shoney's. I ate pretty much a whole plate and then I messed up and ate extra bacon. I still love bacon but it don't love me back. 9 more to go. It seems like an eternity yet the light is getting a bit brighter at the end of the tunnel.

  My throat is closed up a bit more tonight and it is getting back hard to swallow water, breathing takes effort as well. I'm using Lidocane 2% Viscous to numb it. The biggest draw back with it is it compromises your gag reflex when it numbs. Probably getting on the tractor and loading the flat bed didn't help any yesterday either.

  I'm listening to my body today and crashing early.