DAY #35 35 Down and 0 To Go Done!

Day#35 Wednesday Feb.10,2010 This is the date I have been waiting for.
Can you believe it? 35 treatments and now I am done. Now, we cross our fingers and keep saying those prayers and the cancer will not show it's stinking head ever again. I have know doubt that all the prayers that have been coming my way, has helped me get though this in good shape. Before we started with this treatment, my doctors were concerned about how my skin would react to the radiation. Remember, I have a severe case of scleroderma called Morphea. Now that RT is done I can tell you that I have had no bad reactions to my skin. We were worried about my jaw line and face most of all. The tech told me yesterday that they have people who have problems in the second week. These are people who dont have any skin problems like I do. So, I feel real lucky about this. Now I need my throat to settle down so I can start drinking more fluids. As all of you know, that's what I want- DRINK DRINK DRINK. I feel good so now we just need for me to be good. I have made a desicion about this blog now that my treatments are over. Many of you have told me how much you love reading my blog daily. Here's is what I have decided. I will keep writing this blog. I will focus on my daily triumphs and struggles in recovering from Tongue Cancer and Radiation Therapy. I will try to make it light, and interesting. Hopefully you wont be reading about Mr. Mucus for too much longer. Thanks to all of you for your prayers and for reading this blog. Hey- 35 Down and 0,ZERO,NONE To Go

Day #34 34 Down and 1 To Go

Day #34 Tuesday Feb. 9, 2010 34 Down and only 1 TO GO.
I had another bad night sleep and it was a bad evening leading up to that. Again, it is the buikd up of mucus that is putting a strian on me. Since my saliva gland that produce the thin water arr damaged and not working, all I am getting is this thick heavy mucus. It needs the water saliva to attach to it and lead down your throat to be swallowed. It's gross but, no one said this blog was going to be reprinted in Mother Goose. This is real stuff here. Sorta like COPS for cancer patients.I have had fun writing this but now I what to give you a good feel for whats happening at the end of my traetments. As I said in yesterdays blog, this should clear up in a couple of weeks. I have to see my Speech Therapist in the next week or so. I have to get help with some exercises to help me with my speech. I also lost 1 more lbs this week. I am at 164 lbs. Dr. Holland said thats fine and I should be able to start putting on a few lbs. in the next few weeks. One of his patients lost 8 lbs in one week! Just because the RT will be finished doesn't mean that this whole ordeal is done. Now I must - learn to talk, eat, drink, and brush my teeth all over again. Remember, I only have 1/4 of my tongue left. There is something there but it's not a tongue. at this time my mouth will only open just enough to get my index finger between my teeth. I have to exercise my jaw to get that baby opening wide enough to put a fork or spoon in it. This will be very important over the next couple of months. If I let scare tissue build up in these areas, I will never be able to regain use of those muscles. So, I will have to focus on: jaw, neck ( from side to side) and tongue. I have to exercise my tongue by sicking it out as far as I can. Funny thing is that my tongue will never even be able to go past my lips. But , I must keep exercising it to build up the muslces. Okay , That's it for today. I juts tried to have a sip of chocolate milk and I almost chocked on my laptop. I am going to go see if I can have some water. I did drink about 6 oz. of water today on the way to RT. I need to get about 8 oz more before bedtime.
Oh By The Way 34 DOWN AND ONLY 1 TO GO

Day #33 33 Down and 2 To Go

Day # 33 Monday Feb. 8, 2010 Only 2 more to go.

You might be expecting to read my blog to day and it be full of Saints stories and highlights and stories and highlights. Well, you will be disappointed then. As you can see, the picture I put up for yesterday says it all. CHAMPIONS! There is no way to top that or anything I can say that would explain it any better. So, read it and weep- Colt Fans!!!!

Sunday and Monday were not good days for me. With the end of my treatments only an arms length away, these side effects are still kicking my ass. We tried to go over to our great neighbors house for the Super Bowl but my mucus was so bad we left about halftime. We should have come home earlier but these people are so good to us, we wanted to stay as long as we could. We game home and I had about 3 really bad rounds with this mucus. What happens is that, I have to gargle to get the mucus out and with that you bring up more mucus from way down in your throat. When it breaks, it lodges in your throat and I am telling you, there are times that I cant breath and it feels like that's going to be all she wrote. My eyes get blood shot, my nose may start to bleed, my face turns bright red, and my eyes water and my face kind of swells. This has been the hardest part of this treatment. I know you are probably tired of hearing it but, if I can help someone who may go through this one day, the it was worth the writing. I had a bad night in bed also, having to get up a few times to clear the mucus. The sleepless nights along with the fatigue from the RT really takes control of me in the afternoon. At about 3pm , I am ready to get dressed in pj's and take me a nice nap. I am just drained of energy by this time. Okay, have a good day and did I mention that THE NEW ORLEANS SAINTS WON THE SUPER BOWL?

WOW

okay 22 down and 2 To Go

ENUFF SAID

Day #32 32 Down and only 3 To Go

Day #32 Friday Feb. 6, 2010 Only 3 Treatments Remain!!!
I can't believe it, Only 3 more treatments to go. Time sure flies when you're having fun. LOL! Really, it is amazing that it really did fly by. I just hope and pray that this is the end of any kind of treatment for cancer. Kari and I do believe that the cancer will be gone when tests are taken. As for as how I am feeling well, thank God this will end soon. The mucus situation is testing my strengths. It is so agrevating how it flares up at certain times. Times when you wish it would just stay away. Like when someone stops by to see us and to see how I am feeling. It almost seems that as soon as the doorbell rings, here comes the mucus. It's that way with the phone too. As soon as I would like to talk on the phone, here comes Mr. Mucus. I was bragging about being able to drink a little water the other day well, just as I also said, the next day I couldn't drink anything. I have never, not once, felt like I needed to eat. Now, I see all these food commercials and it looks good but, I never have a craven for food. But, when I see ice tea, gatorade, snapple or juice commercials, I go nuts. I know I am beating a dead horse but, I just want you to think about this. I have had 3/4 of my tongue removed, 3 operations, stuck in my house since September, barely able to do anything for myself and yet , the worse part of it all is that I can't drink a glass of ice cold water or drink anything for that matter. Those things we take for granted is amazing. Treatment #32 went fine and I had no problems. They locked me in and I think I fell asleep. I should ask more questions about what there are doing each day but I dont want to stay there any longer than I need to. I wonder if they radiate the same areas everyday or to they do it in steps. I promise I will ask some of those little info questions before I am done. I will past them along to you.
So with I will say- 32 Down and ONLY 3 TO GO. Thanks for reading my blog. Now get out there and pull for the Saints and be ready to cheer for a Champion. Let me hear you say it---
WHO DAT!!!!

DAY #31 31 Down and ONLY 4 To Go

Day# 31 Thursday Feb. 4, 2010 Only 4 Treatments Remain!!

Okay , yesterday evening was a really bad time for me. For some reason it seemed like someone had turned on a switch to produce 10X the mucus for me. Man, it was the worse it's ever been. I choked about 4-5 times and let me tell you, that isn't any fun. I was worried a few times that I wouldn't catch my breath. This went on from about 2:00 pm until about 11:00 pm. After fighting this all evening, I took my meds and went off to bed. I was anticipating a bad night but, to my suprize, I slept all night without any problems. This morning I was determined to try and find something that would work for ME. Everything that I have tried has worked for other folks but for some reason it hasn't worked for me. I took a little pain medicine this morning and after about 15 minutes, I poured me some Ice Cold Water and got ready to take a chance. To my surprise, I was able to drink about 10 oz.! I drank a little more on the way to my RT this morning. Dr. Holland had mentioned something in one of our meetings and it was stuck in the back of my mind. He mentioned something about pain medicine may help me swallow better. I wasn't thinking about this from the same way he was. So, I took pain medicine and once it kicked in I tried to drink. I wish I would have thought of this before. Now, you watch, tomorrow it won't work. It seems that everyday is different. So, far now, I will try to keep a little more pain medicine in my body and see if this helps. I just have not been a person, throughout this 5 month journey , who has taken any medicine for pain. On the other hand, I had no pain throught this journey, except for my throat. I'll keep ya'll posted. Next , I will have to try to eat something. It will be a smoothie or ice cream or maybe yogurt.

Now I most remind all of you. 31 Down and ONLY 4 TO GO!!!!

WHO DAT!!!!

Day #30 30 Down and 5 To Go

Day #30 Wednesday Feb. 3, 2010. Can you believe it? Only 5 days to go!! What a week- Saints will win the Super Bowl and I will beat cancer!

I had a rough afternoon yesterday but at least it tired me out so that I had a good nights sleep. I had a couple of bad rounds with the thick mucus. My treatment was at 11:00am this morning, which is the perfect time for me. There was no traffic and I zoomed into Portland for my treatment. Again, I didn't have to wait more than 2 minutes before they called my name. As soon as I arrived on the 4th floor, I went to the restroom to gargle and rinse with my special cocktail. I am glad I did as I had a lot of mucus at that time. I went into the room, got undressed and laid on the table. By the way, when I say undressed, I mean I took my coat, and top shirt off only. I laid down and took a few deep breaths. They placed the mask on me and they all left the room as usual. The machines started moving and my table started to adjust itself when all of a sudden I realized that I couldn't breathe. I large mass of mucus was clogging my airway and because of the mask, I couldn't cough or do anything about it. I started waving my hands, as they had instructed me on day one, to show I needed help. They announced on the PA- we'll be there in a flash, and they were there in about 20 seconds. They popped the mask off and I was able to cough. The lowered the table and got me off asap. I had another cocktial and was able to rinse the mucus mass and breathe again. Man, that scared the crap out of me. I had thought of that happening many times but it had never taken place. Wouldn't you know it, 5 left and I almost choke to death. Lord! After about 5 minutes, I caught my breath and was ready for the treatment. Everything went according to plan after that. In about 16 minutes I was done with #30. The techs were so sorry at what had happened and I assured them that it wasn't anything they did or didn't do. I got dressed and headed home. Agian, there was no traffic and I zoomed home. I had to take some pain medicine with my noon meal ( I wish it were a real meal) of jivity. That made me a little drowsy so I had to take a little nap. I am feeling a bit better now. If your wondering about how the new Miracle MouthWash is doing well, that's another story. I have tried it and you have to aquire a taste for it and be ready for the texture. I am supposed to gargle with it and then swallow. It will numb the mouth and then when you swallow, it will numb the throat. WHEW!@&%^!@% Gargling is not to bad but, I have a problem with the swallowing part. Maybe I am a wimp or maybe it is becuase of my other condition but, I have a problem swallowing this stuff. I will not give up and will keep trying to swallow. I will just keep thinking about that big glass of ICE COLD WATER that awaits me at the finish line..

Anyhow , I almost forgot 30 Down and 5 To Go.......................... WHO DAT!

Day#29 29 Down and 6 To Go

Day#29 Tuesday Feb.2, 2010
Can you believe it? Only 6 treatments left to go and it couldn't come sooner. I am tired and ready to rap this up and put it behind me. Today''s treatment was at 11am and we arrived on time. They took me as soon as we got there, which is fine with me. They had my ESPN on and I got undressed and laid on the table. A few new faces were in there again today. They locked me down and treatment #29 was on it's way. It went by really fast and before you know it, they were taken the mask off of me. Since it is Tuesday, I had to meet with Dr. Holland today. My weight today was 165.6 lbs. A little less than last week but the doc said no problem. They are really surprised how the skin on my face has help up during the RT. I can't believe it either. I thought it would be really bad but, it actually looks a little better. Dr. Holland looked in my mouth and thought I was doing great. I do need to work on my face, jaw and tongue excerises a little more. We talked about trying a new formula for the pain in my mouth. It's a cocktail may up of - Benadryl, Maloxx and Lidocaine. I will try this in a couple of hours. It is supposed to help with the mouth pain. Let's hope it works. This morning was a really bad morning with the mucus situation. I did sleep all night last night. I didn't get up one time to go to the bathroom with the mucus problem. Like I said though, I paid for it this morning----wow. That stuff gets scarey. Sometimes you just can't breathe because the mucus is so thick. For the mucus, I will try rinsing a few more time per day. Dr. Holland thinks this may help. Again, we shall see.
Okay, now I can say it 20 Down and only 6 To Go

Day #28 28 Down and 7 To Go

Day#28 Monday Feb.1,2010 WHEWWWW! I only have 7 more treatments to go. All of my treatments lately have been at 11:00 am but, they need to move some things around so I went in today at 7:40 a.m.! Man , that's early for me, I have been spoiled. Traffic could have been bad but for some reason it was moving along at a good pace and I got to RT in about 25 minutes. That drive at that time of the morning could take over 1 hr. on some mornings. I didn't even have time to open a magazine before they called me for my RT. When I got in there, they already had my ESPN on and they were talking Saints football. All the techs knew I was happy since all of my outfits that I wear to go there is Saints gear. I have about 5 caps, 5 Shirts and a new Saints hoody jacket. Okay, treatment went well and before I knew it, it was over. As soon as they took my mask off, all I could think about was " Only 7 more to go". Next Wednesday has a been circle on my calendar. Yesterday was a drab day for me. It was Sunday but it felt like the middle of the week. I think yesterday might have been the worse day yet for mucus. I know I have said that before, what I should say is that- up to this point- this is the worse yet. It was so bad that I had 3 nose bleeds from the pressure of gaging so much because of the mucus. I gargled about 12-15 times. During the night, I got up about 5 times to gargle. Getting up that many times during the night takes it's toll on me. I was so tired this morning that I thought about not going in. I quickly changed my mind when I realized how few treatments I have left. So far today the mucus hasnt been quiet as bad. I have beem able to drink a glass of water. Yesterday, I wasn't able to drink much, maybe only 1 glass all day, which is not enough. Super Bowl Sunday is getting close. Go SAINTS!
By the way I almost forgot 28 Down and 7 To Go

Day #27 27 Down and 8 To Go

Day #27 Friday January 29, 2010

Can you believe it? I only have 8 more treatments to go, WOW! I have been lucky with my treatments time being around 11am each morning, with a few exceptions. Now that I am close to the end, they are changing me next week. Monday will be at 7:40 a.m.. With the traffic situation going over to Portland, I will have to get up a little early to get there on time. Hey, with only 8 to go, I'd walk to Portland if I had to. Today was a special kind of day. I was able to bring Kari into the treatment room with me. I wanted her to see the table that I lay on for my treatment. I also wanted her to see the mask that is put on for the RT. As soon as I was locked down, she had to leave the room with the techs. The mask seemed tighter than normal but as I said before, I think it has to do with my face swelling from day to day. I was locked down and 16 minutes later, I was done with treatment #27. Just like the weekend, I have had a tough week with the saliva, man this stuff is bad. I am drinking a little water throughout the day. Now, It's not like I can drink 80 oz. but, I do get down about 16oz. by mouth. I do get plenty of water from my stomch peg after each meal and meds. My throat is still really rough and I am trying all types of things for this. I am not really talking at all which can help but also can hurt. I know I need to keep those vocal muscles moving so they don't freeze up on me. I must keep using them. I am not able to eat anything as of yet. I think the Dr.'s think I should be eating by now but, I can't. They problem is getting the food to the back of my mouth. As I have told you before, the human tongue is a remarkable thing. It moves food around you mouth getting it ready to be swallowed and puts other food on the side of your mouth because it need more chewing. Well, I have lost all of that from my tongue. Since I only have about 1/4 of my original tongue left, you can't have the other 3/4 of tongue learn something like that. I have been told that over time I will be able to eat but, I think it will be on a small scale. Now, I want to be proved wrong! I will keep trying and hopefully I will over come this cancer and beat it. Now, since yuo are probably alone reading this, let me hear you say this loud- WHO DAT!!!! Now, if someone else is in the room, they are looking at you like you are nuts. Next Sunday will be a very happy day in my life. The New Orleans Saints are playing in the Super Bowl and will WIN!!! I will have the score later in the week. I almost for got Day#27 27 Down and 8 To Go

Day #26 26 Down and 9 To Go

Day #26 Thursday January 28,2010 Down to single digit days left of treatment!
Today was a day that seemed like a page from the movie Ground Hog Day. I guess everyday since I started this journey could be from Ground Hog Day. Seems simple, you get up, after sleeping a little too long, wash up and get dressed. At this time Kari usually has my Jivity ready to go. I need to get in a least 1 can before I head out. I have been putting a can in my stomach tube with my syringe instead of using the drip bag. The drip takes about 30 minutes and I can do the stomach tube in about 3 minutes. I don't like using the syringe for feeding. Something tells me you shouldn't put that much liquid, that quick into your stomach. I also take my meds in the morning. all of this is done through the stomach tube since I still cannot eat or take medicine through my mouth. Heck, I can barely drink 4oz. of water, as most of you know. I seemed extra tired this morning and wasn't really ready for my treatment. I sat down and within 5 minutes, they were calling my name. When I got in the room there where 2 new techs. I got on the table and was ready for this to be over. I was having a bad morning with my throat and couldn't kick this this tic in my throat. I was coughing so much , I thought they may ask me to leave the room. This caused me to be a little worried when the mask would be put on. Dan asked me if I was ready for the mask, I took 2 deep breaths and said- " GO FOR IT" with that, he put the mask on. I was so worried about choking or coughing while wearing the mask. I said a couple of extra prayers and before you know it. They were taking the mask off saying " WE'RE DONE" Boy, did that sound good.... I got up put my jacket on and got the heck out of there. I headed home and sat down to do this blog. Now, I am going to have to take a nap to get a little energy back. So here you go.
Day#26 26 DOWN and 9 To Go

Day #25 25 Down and 10 To Go

Day #25 Wednesday January 27, 2010
Wow, only 10 more treatments to go. Now my thoughts are running wild about this treatment being over. Also, no chemo or any other types of treatment or operations. In talking to Dr. Gross this week, he seem to think everything was going fine. He said he would keep me coming in to see him once a once and then at the 3 month mark he would do a PET scan. That's all good news to Kari and I. I am feeling okay today and I really think I have made it through the toughest part of this. I think the fact that the Saints are going to the SUPER BOWL, has a little to do with the way that I am feeling. Man, SUPER BOWL- That sounds sooooo good. Some of you have probably been reading my blog and wondering about the whole Saints fan stuff. If I have to explain it, then you have never been to a Saints game or experienced the fun in the WHO DAT nation! I get tears in my eyes just thinking about this stuff to write for my blog. I have been a fan when we were 1-15 and when we never had a winning season 21 years after starting to play football. I remember Tom Dempsey kicking his 63-yard field gold. The TV that I watch football today is sitting on top of the same stereo cabinet that I used to listen to the Saints games on. I think the fact that we ONLY had football in Louisiana pro sports , is the reason we are so crazy about this team. Anyhow, it's great how it's gotten my mind off of this Cancer.
You see, I almost forgot 25 Down and 10to Go

Day #24 24 Down and 11 To Go

Day #24 Tuesday January 26,2010
Got a full nights sleep last night. It sure helps when I can sleep all night. That many hours without pain are some really nice hours. I wish I could be awake to enjoy it! lol. My treatment today went fine. All new technicians for some reason but, everything went fine. I listened to ESPN and of course they pissed me off. They are talking more about poor Brett Favre than they are talking about our TOUGH SAINTS team.
okay , I will try and write a litle about my Saints. All of you who know me , know that I am a huge Saints fan. Doctors told me that when they cut me open, I bled black and gold! I remember going to church on Sunday mornings. Getting back home and Daddy had made biscuits from scratch. Then we would get dressed for the game. We usually had 4 tickets or someone was offering us to go with them. Sometimes it might be Todd and I or Daddy and Todd or Todd and I might go with someone else. I remember Daddy and Parin Belanger discussing talking the Bayou Blue short cut or going through Houma. If you caught the bridge, it wasn't a short cut. These days, it's not even an option. You take the Houma route. We might have a sandwich for the trip or they would stop and get a littel snack along the way. The closer you get to New Orleans, the more excited you would get. The drive then was about 90 minutes. In those days the games were at Tulane Stadium. An outdoor stadium that held over 80,000. It was and old stadium but- so funny that I remember this- it was just the way football should be played. Before you got to the stadium you had to do this important task- park your car. This was one of the coolest parts of the old days. The parking lot was not to be found so, you had to park on side streets around the garden district. Homeowners were in the parking business too. You would pay to park in the driveway or in their yard. It costs about $5 back then. The walk to the stadium was so cool. You just got so pumped up. There were people selling things along the walk to the stadium. You could by everything from cotton candy to peanuts to popcorn balls. Tulane stadium was so big and being made of steel and wood, it was the perfect amplifier when fans started to pound their feet on the steel floor. Wow, what a feelin that was. I remember the first time I came to my seat and looked out at the teams warmin up on the field. There was the almost red-ish looking DUKE footbal used by the NFL. There was the Saints endzone and there were the Philly Eagles with their green shoes. It was almost too much , too soon for a down the bayou boy like me . One time, we even had camel races after the game.. More on my Saints memories later.
Almost forgot 24 Down and 11 To Go

Day #23 23 Down and 12 To Go

Day #23 Monday January 25,2010
Wow--- What a weekend, what a game, what a feeling, what a relief, We are going to the SUPER BOWL!!! WOW. I have been holding up pretty good with all this radiation and cancer stuff but, I cried like a little baby at the end of that game. Unless you lived each game for all those years, like I have, you have no idea how good this feels. I will write more about the game and what it means to me later on. Let me get to my weekend and my Monday treatment. This was by for the worse weekend so far since RT started. The mucus and sore throat was at it worse. I really couldn't say but a couple of words this weekend due to the pain in my mouth. Lots of things are causing the pain: sore throat, sores in the inside of my mouth from the radiation and of course the mucus.My throat was so dry , it felt as though I was eating sand. Putting a cold wet wash cloth on my face gives me some relief. It feels close to drinking some cold water. But, you can only do that so many times in a day. I gargled so many times this weekend that I really dreaded doing it. After doing it so many times, your throat gets burned from the salt. I gaged so many times, my eyes were blood shot red, my face looked like an apple, but I have to keep doing it in order to breathe. It's amazing the things your body does day after day 24/7 and we don't even think about it. Here's a little tidbit about your saliva and swallowing. Think about this and you will see would I am taking about. Your mouth does not produce extra saliva to swallow unless you think about it. If you think about swallowing you saliva , you will produce it and swallow. Will here is what sucks from my point of view. I don't want to swallow, because of the pain. Well, because I am thinking about it, my mouth produces saliva over and over and over again, leaving me with a mouth full of mucus. It's gross but, I am just telling you what I am going through. Now I have a mouth full of saliva. I garlgle to get it out and I also have a little pump that I use when it is really bad. At night it gets better. The reason being is that I am not thinking about it so my mouth does produce it over and over again. I was reading a blog yesterday and came across something that might help me with my sore throat. The person writing the blog was going through the same side effects that I am going through now. He found a supplement called Glutamine. I put 1/4 teaspoon in 8 oz. of water and I was able to drink my first glass of cold water in OOOOHHHH such a long time. It took me 25 minutes to get it down but, I got it all down. Now , this is not to say that this new stuff is the cure all product but, it worked today. It is used by boby builders to rebuild their muscles as they are training. It also helps rebuild damaged cells, like the ones that get damaged during RT. Based on the blog that I read, this product will give me some quick relief on my throat and also some long term help in the entire healing process of my entire body. Let's hope this works.
Ok. hope you enjoyed the blog today. Thanks for the comments.
Oh I almost forgot 23 Down and 12 To Go
And dont forget WHO DAT!

Day #22 22 Down and 13 To Go

Day #22 Friday January 22, 2010
Okay, it's Friday which means I now get 2 days without the radiation! Thats enough to make me want to jump and scream. Just 13 to go, that's music to my ears. I slept great last night, didn't get up once during the night. Again, I found it hard to get up but, after a few minutes I got up. My legs and face were the problem spots this morning. The skin on my legs was so tight I could barely walk but, I did manage to get going.I applied medicine to my legs and got instant relief. This problem is not from the RT. This is from my Morphea. My face was just as tight but, that is caused by the radiation. I also have lotion for that, so I applied it and also got some relief. Over night I didn't have any breathing problems from my saliva. That changes as so as I get up and moving. I had to do my routine of the salt/baking soda-gargle. Then I have a soecial med that I have to gargle. This is the side effect that I can't wait for it to be done with. Man do I hate it. I am home now and I am getting a little sleepy. This seems to happed after I am home for about an hour. Most of the time I can fight it but today I think I will give in. I have work to do so, I will nap then get busy with work.
Now for the serious stuff.
There is nothing and I mean nothing more important ( in sports that is) than the football game on Sunday.
I feel good about our chances and I think we will go to the Super Bowl. So, put on your black and gold and get something to drink. It's going to be a great day in Saints history. I think we are off to the Super Bowl.
Thanks for reading my blog and please leave a comment. But, remember this
22 Down and 13 To Go!!!!!! WOW ONLY 13!!!!!
I almost forgot- have you donated to the people of Haiti yet? Get online or lickup the phone and donate something.....$5, $10 whatever wil help.
Kari and I did and you know what..... IT FELT GOOD!

Day #21 21 Down and 14 To Go

Day #21 Thursday January 21,2010
All about the same today as it has been over the past week. The treatment is becoming the easiest part of this whole journey. Everything is falling into place just as the doctors had told me. The side effects each take their turn at being a pain to me. It seems that they don't all hurt at the same time. Maybe they do but, this is just the way it seems. Maybe that's the way it should be. I started using a new but old med for my dry skin and it seems to be working just fine. The only problem is that you can't use this for a long period of time. I will monitor it and I know how to handle this , as I have used this before. I have been sleeping real good. I have a problem geting up in the morning though. I think it is because I feel so good in bed that I hate to get up and start feelong all the different things that I know will start acting up as soon as I start moving around. My saliva was really active today which means it was another day from hell. I dont wish this on my worse enemy. I know that will come to and end one day so I just have to deal with it the best way I can. If I knew that I would have this for ever, WOW! I would have to have some serious talks with the doctors to get me though this. But, Let's not go there. Ok, let's not forget the biggest game in Saints history the weekend. Sunday will be an EPIC EVENT! I have a good feeling the we are going to the Super Bowl. More on that later. OOOOOPPS , I amost forgot 21 Down and 15 To Go

Day#20 20 Down and 15 To Go

Day#20 Wednesday January 20,2010
First of all , Happy Birthday to my sister Wendy. Hope she is felling better today.
My RT treatment today was fine. It seemed to only last about 3 mintues but I know it was 16 minutes.My mask has been real tight on my face for at least the last 3-4 treatments. The reason is , even though I have been loosing weight, my face is swelling due to the radiation. The back of my neck is really starting to scar. My whole face is stiff and I have to put jell,lotion, what ever I can get ,on my face 4-5 times per day. My throat is the worse part. I still have gotten no relief from that pain. I want to drink something cold sooooo bad! This is the worse part. I can put it in my mouth but, it take about 10 swallows to get a teaspoon of liquid down. My throat is so swollen that the passage way is smaller than the lead in a pencil. I open the fridge and just look at all the good things to drink. There is : water, juice,milk, strawberry milk, chocolate milk, V8 juice, white grape juice, cranberry juice and on of course the reliable Ensure. I would gladly take anyone of the but I can't. The pain to swallow is so darn bad. I hope this wears off soon.
Well, nothing else to report today. Just hope to be able to drink again soon.
Also, get this, 20 Down and 15 to go.

Day #19 19 Down and 16 To Go

Day#19 Tuesday January 19th 2010.
Welcome it was back to the grind today after 3 nice days away from the Radiation. It sure was nice. I am on the downslope from here so I really see the light at the end of this long tunnel. As I said previously, the past few days has been hell with the mucus. Along with that, my skin has become so darn dry that I could be in a circus sideshow as SNAKEMAN.. I have lots of different meds for this but none seem to be working at this point. I am showering everyday now just to knock all this skin from my body. I had been showering every other day because of all the things I must do when I shower. I have to replace bandages and now my showers take about 1 hr.. I used to be able to get ready for anything in 20 minutes. Today I meant with Dr. Holland as I usually do on Tuesdays. My weight was up 6/10 of a lb.! I am now at 168.6 lbs. Dr. Halland thought everything was coming along fine. I had developed some skin rash in the back of my head and he said that was from the RT and not to worry. My tongue is still slowly shrinking to where it should be. He jumped me a little for not working my throat muscles enough. Here is the deal. I am having problems swallowing water and other liquids. He said that I MUST try a few times per day to get anything down. If I don't , those muscles will get more and more difficult to use.Scar tissue will build up arrow those muscles and then I will be in a hell of a bind. Even if it hurts like hell, I must to this to avoid problems when my RT is over. So, now I am going to be working on that little situation. Other than that, everything is going well. He still tells me that it will get worse than it is now. Man, I like he honesty but, he should keep that to himself- LOL.
Thanks to all of you how are reading this blog. It really is helping me to put my thoughts and activities in writing. It's amazing how this cancer his just taking over my life. It will be so good when my RT is done and I get the - ALL CLEAR from the doctors. I am looking for to eating and drinking like a real person. I never realized how my TV commercials are about food and drinks! They drive me nuts. I am wearing out the TV clicker.Okay, gotta go for now. We will chat later. Oh by the way I almost forgot- 19 Down and 16 To Go.
GO SAINTS!!

Day #18 18 Down and 17 To Go

Day #18 Friday January 15,2010
Friday was a rough day because Thurday afternoon and Thursday night were pretty rough. The rough part is two fold. Part 1 is the heavy, thick, over producing saliva. Most people get grossed out wen you talk about this but, it is something we all have except not to the extreme that I am experiencing. This is caused by the radiation distroying the thin water saliva production. In a normal mouth you have both thick and thin saliva. Since my thin saliva is not there, all I have is this thick mucus. As I said in my blog from earlier days, I have to gorgle about 12-15 times per day to help with this issue. I do this with two different types of "cocktails". #1 8 oz. of water/1/4 teaspoon baking soda/1/4 teaspoon salt. The other is a prescription mix. This mix helps to soothe the throat after it takes a beating from the salt. On Friday and Saturday I was just about unable to speak. The problem is that when I begin to talk, my mouth fills up with saliva. Its a weird thing. I think I said 10 words to Kari on Friday and Saturday.It's tough because, I feel fine, I just can't talk with ease. Kari has been good about this. Hell, it's like I am on the road working , since I can't talk. With this , the pain involved comes from my throat. It is felt when I swallow. Even if I a just swallowing saliva it hurts like hell. It fells like razor blades in my throat. I have been trying to find things to drink to help soothe my throat. As I said before , milk does help. I just have to get it to the correct temperature. Too cold hurts and to warm just is plan nasty. I have also increased one of my pain meds to help with my throat. so far it seems to help. I am writing this on Monday morning. I have no RT today as it is MKL day. I had and up and down weekend. I just know that I am halfway down with this RT. That's right folks 18 Down and 17 To Go

Day #17 17 Down and 18 To Go

Day #17 Thursday January 14,2010
Not much to chat about today, kinda not feeling well enough to contribute a lot to the blog today. My mouth has been so sore that all my attention has been on finding relieve for the pain. I try to stay away from pain pills during the day. I may take a pain pill at night to aid in my sleep. During the day I have a topical solution that I can put on each on the mouth sores with a sterile cotton swab. I do that about 4-5 times per day. I am still trying to drink as much as I can but that is a real chore. Things are either too hot , too cold, too thin, or too thick. Everyday it changes.I am writing this on Friday morning before I head out for my 11am RT. I feel like crap today as well. I know some of it is just the radidation and some of it is that , am just tired of not being 100% ME! I haven't been myself since August. What I wouldn't give to be able to have a regular meal and drink.....
Okay enough of pity, pity for me. I can get through this thanks to all of you who are reading and writing and calling me. You may notice that I bring that up a lot in my blog. I want all of you to know how much it helps. Sometimes you may call me and I can't talk but, just the fact that you called , makes me fell better. I will have more about how I am feeling when I write todays blog later this afternoon. For now this is all but remember Day #17 17 Down and 18 To Do

Day#16 16 Down and 19 To Go

Day#16 Wednesday January 13,2010
I found this picture of THE MASK at work. This not me but, this is how you are fitted each day for RT. Keep in mind that this is not like a fishing net. This is are hard as rock and will not move 1 mm when attached and you are clamped down to table.
Treatment was at 11am this morning. I left home at 10:30 and got there at 10:52. That drive is so sweet when there is no traffic. I was one of only about 4 people in the wating area when I arrived. I got me a magazine , read the cover and put it down. I was going to get me a little shut eye if I have a few minutes. I put my head back, adjusted my SAINTS cap, and closed my eyes.I think I was there for about 30 seconds when the nurse called my name. I jumped up and headed for the RT room. I could have slept for hours. My meds that I take to help me sleep are finally working as they should be. I may have to cut down on the amount I take. Treatment was quick and easy again today. They did put the mask on very tight again but, I am getting used to that now so no big deal.I went right to sleep when the techs left the room. Next thing I know, there are taking the mask off and saying " That's it, you're done!". Music to my ears. At this point I have no idea what time it is. I had left my phone in the car and had no watch. When I got in the car , the clock said 11:32 am. WOW , that really was a quick treatment. I came home and now doing some much needed work.My throat is still my biggest problem to deal with. I have been drinking a little whole milk the past couple of days. The doctor said this is something many of the patients try. So, I wi try it and see wat happens. So far, I can handle it.
You know what else I can handle????? Day #16 DONE and 19 To Go.

Day#15 15 Down and 20 To Go

Day#15 Tuesday January 12,2010
Wow, what a tough morning. I have been trying to find the right words to describe what my throat feels like. I think it feels like I would have about 1 lb. of small gravel in my throat that just sits there and moves around when I try to swallow. This swallowing thing is really getting me upset. Well, it could be worse. While Kari was wating for me in the wating room today, a man came in for treatment and he had only 1 leg. She told me about that and all of a sudden , my throat doesn't seem to hurt that much. Treatment was fine today. I really did fall asleep today. I was snoring pretty good too. After my treatment today , since it is Tuesday, we meet with Dr. Holland to discuss my progress. He was happy with everything. He looked in my mouth and told me that THE MEATBALL has shrunk a great deal. The Meatball, is what I named my tongue after I saw it on a monitor in the doctors office. He put a camera in my mouth and took a few pictures. This was good news as I was thinking it may never get any smaller. They prescribed a new medicine for me today. At this point of my treatment, my mouth has a lot of things going on on the inside that we need to be awhere of. The radiation plays tricks with teeth,gums, and tongue. Radiation will zap most of the fluoride from you teeth and mouth. After RT is done , I have to put fluoride on my teeth everyday. I have trays for my mouth that will hold the fluoridde in place. It looks just like a mouth guard. The medicine they gave me will kill a certain type of fungus that attaches itself to the roof of your mouth. She did see signs of it and was suprized that she didn't see it before. Everyone who has RT in the head and neck area will get this. Kari was really excited today because I gained 1.5 lbs. this week. She has been really trying to get me to drink more each day but, it is a tough thing to do. I am full but I need to have 2 more cans.She is doing a great job though, I would be down to 150 lbs. if not for her. So Day #15 is done. Now, let's see how I sleep tonight. Going to watch American Idol. Oh , also,
I almost forgot Day #15 15 Down and 20 To Go

Day #14 14 Down and 21 To Go

Day #14 January 11,2010 Monday
Two days away from RT is a nice break. Last week was my first full 5 day week of RT. The weekend was kind of an up and down couple of days. Two things keep giving me trouble. I am producing so much thick mucus that it really scares me sometimes. It scares me because, all of a sudden you go to breathe in through your mouth and you can't! You don't realize that you are breathing through you nose and the mucus just builds up. As I had noted before, the reason the mucus is so think is that the pores that produce thin water for your mouth have all been affected by the radiation. I was warned , now I just need to be prepared. I was able to drink a few more things this weekend. I had water, soda pop, ensure and strawberry milk. The other thing is that I am trying to get more rest and sleep at might. I think we have that all worked out. We will see tonight. I am getting to the point where I can drink water everyday. This makes me so happy. Water Rules!!! The RT is really never a problem. People ask me " Who did you treatment go today?" Well, the truth is that , I lie on the table and 15-20 minutes later they say, "Okay, your done". I kind of laugh within myself thinking. Who knows if they even turned the darn machine on today. That is the good thing about the RT. You feel nothing while you are getting your treatment. Unlike Chemo where you get sick and you wish you were dead sometimes during treatment. I am so lucky that I am only having RT at this time. My skin seems to be having some type of a reaction to the treatment. It is really dry and I use several types of skin treatments to help the cause. I was looking at the numbers and realized that I have 4 more treatments until the half way point! Wow half way through! That will be exciting to me. Just a little FYI- Kari is doing fine with her left hand today. She had the carpal tunnel surgery on Friday and it s amazing how quick people heal from things like that. She has knocked her hand a few times, which does create a little scream, but for the most part she is a champ. In 2 weeks she will have the right hand done. My little angel is only slightly wounded as she has not lost aa step in taking care of me.
Well it's Monday so I better save some of my writing for the rest of the week. Thanks for reading and caring about my RT.
I almost forgot- 14 Do and 21 To Go.

Day #13 13 Down and 22 To Go

Day #13 Friday January 8,2010 Happy 75th Birthday Elvis-- THANK YOU, THANK YOU VERY MUCH!
Elvis was the King know doubt. And yet, he only won 1 Grammy. Wow.....
Well, I slept through the night last night. No problems sleeping at all. My biggest problem now is speech.I seem to only be able to talk to Kari in just a few short sentences if that. My mouth is just too painful. If I talk soft and slow I have a better chance of speaking with her. I am good for about 1 - 20 minute chat per day. After that it's a crap shoot as to how much I can talk. I must push the envelope though, I need the exercise for my throat muscles.
RT was fine today. They took me within 2 minutes of us arriving at OHSU. My appointments are for 11am. At 11:35am , we were in our car headed down the hill towards home. Kari had to get home a prepare mentally for her surgery today. She is having that carpal tunnel surgery on her left hand today. Her friend Lise came and picked her up and brought her to the hospital. They just called and of course the Dr. is running late. She will get in a 3:30.. The operation will take 45 minutes and after a while in recovery, she will head home. I don't like being without my punkin. It really hurts that with all she has done for me, I can't be there for her today but, it would not have made sense. I have to eat too much from the tube. I had the jumps on the table today. I forgot to take one of my meds and my legs had the jumps. Funny how the techs noticed it. I can't let that happen again. I am home and my mouth is so dry, lord... I have been able to drink a little water lately so, I will go now and ty to have some. Chat tomorrow. but wait if almost forgot DAY #13 13 Down and 22 To Go.

Day #12 12 Down and 23 To Go

Day #12 Thursday Jan.7th
I had a good night sleep last night. Because I slept, that means Kari also got to sleep all nigh. We seem to have my meds straight now and I am looking forward to many nights of sleep with no interputions. I don't get to nap much during the day so te night sleep is so important. Woke up with my mouth hurting pretty bad. I have lots of mucus also. This mucus is the pits! But as Dr. Holland said- It will get worse. My mouth has little sores from the radiation and I expect those to grow also.
Treatmnt went well today. I woke my self up by snoring! It's amazing how time just flies in there. It's only 18 minutes but boy, if you are sleepy it can really seem like hours. They had to tighten my mask today. They told me the reason but I forgot. Funny thing was , when we got into the car, I had those mask mesh mark all over my face. Thankfully, they only laster about 10 minutes. I am getting around okay at home, just have to move real slow. But , guess what today is?? It's Day #12 12 Down and 23 To Go.

Day #11 11 Down and 24 To Go

Day #11 Wednesday January 6,2010
Well,today didn't start off well at all. The problem is that I didn't sleep much last night. Kari didn't sleep much either. I don't know what was keeping me awake but, it messed with we all night. Kari tried rubbing my back, which usually works, but nothing seemed to work. I hate when that happens. Kari reminded me this morning that I had run out of one of my meds. This medicine is one that is used to help me sleep so...... no more explaination needed I guess. My appointments have now moved over to a really good time to go over to Portland. My RT is now at 11am until the end. We let a little early and when we got there the tech said they were running late. After the RT I looked at my schedule and saw that I was supposed to be there at 10:10am this morning but, hey , because they were late, they never noticed me being late. Funny how you get to know other patients waiting for treatment. I am not much of a talker in the area ( those of you who know me find that hard to believe) so I just look at people.I am still amazed at how many people are being treated for Cancer just at this hospital. My doctors were worried about how my scelroderma would be affected by the radiation. By the looks of my neck and face, they should use RT as a treatment for scelroderma. I am sure they have tried it but, my skin really looks better now than it did a few months ago. I will keep you posted in case there are any changes to that. Okay, Kari and I are feeling good about my progress and we are counting the days to the end of the treatment. Treatment today was uneventful. Laid on table for 22 minutes and all was done for another day.
I must say this again to all of you. The number of cards, emails, gifts and phone callsthat I have recieved has been incredible. I want you to know that these things really help us to get through everyday if this struggle. I try to talk and be as positive as I can when writing this blog. Also when talking to any of you . But, I must admit that sometimes my emotions get the best of me. It is all the cards, emails, and phone calls from all of you that helps keep Kari and I going. Thanks to all of you. In closing I must remind you......... Day #11 11 Down and 24 To Go

Day #10 10 Down and 25 To Go

Day #10 January 5,2010
I thought I would try to add the image of the Mask I keep talking about. Over the next few days, I will also try to get a picture of me laying on the RT table. I don't know if they allow it but, if they do, I will get one. I am so lucky that so far , this has been the hardest part of the procedure. The side effects are something totally different. Tuesday is the day that I meet with Dr. Holland and Dr. McDonald after my treatment. They go over my progress and look me over to see if everything is going according to plans. This week, there is a little concern about my weight. I weighed in at 168 lbs. I haven't weighed that since high school. That means I lost 5 lbs. this week. This is not a good thing. I think I may have weighed in lst weekd with my heavy coat on so, we will see next week. I am feeding by the stomach tube 4 times per day. I also take in water after each feeding an after i take my meds. I have been trying to drink other liquids to help with the weight. The problem ios that somedays I can drink something , the next day that same item is not a good thing in my mouth. Dr. Holland has been so honest with me about what to expect. He looked at the inside of my mouth today and said it all looked good but, things are going to get much worse before it gets better. Boy, that sure wasn't music to my ears but, at least I know at is coming at me. As I said before, I do have sores in my mouth at this time. They are on the walls of my cheeks. I have been able to put numbing solution to help with the pain. Overall, he was happy with everything and said,"GOOD LUCK SAINTS" and see you next Tuesday. we left the office and headed home. Before I went to bed tonight someting incredible happened. I was able to drink a cup of cold water!!!! Now 10 Down and 25 To Go

Day #9 9 Down and 26 To Go

Day #9 Monday January 4,2010
A little house cleaning first. Happy New Year to everyone. Happy Birthday to my brother-in-law #72. Todd, we enjoyed having you for a week long visit. Just wish it was under better circumstances and better weather here in Portland. My Saints lost to Carolina but, they held out starters in preparation for the playoffs. Okay, back to the reason I started this blog. Today in Monday and because of January 1st, I had 3 days off of radiation. I think it helped a bit to have 3 days off. The side effects are still getting just a little worse each day but, anytime I can get 3 days off of RT, I will take it. The mucus in my mouth is really getting bad. I have to gorgle at least 8 times a day and also rinse with a prescription 5-6 times a day. First you try to get the mucus out then you try an calm down you mouth. It's a battle everyday. I am still able to drink just a few sips of a few items. Today I can sip on strawberry milk, ensure, and a little club soda. Who knows what it will be tomorrow.I have lost a few lbs. since this has all started. My last weigh in was 168. Back in August when this all started, I weighed in at 190. I wanted to lose a few lbs. but not like this. Kari is working her butt off you get me fatted up. She is doing what is right. I need to drink or eat anything I can. I need to put on a few lbs. I do 4 feedings a day with my stomach plug. I also give myself plenty of water after meds and after meals.
Well , I need to get a few winks now. I am feeling a little drained. More to come tomorrow
Day#9 9 Down and 26 To Go

Day #8 8 Down and 27 To Go

Day#8 I will start putting the date of treatment on the blog. I sometimes am not feeling well enough to write a blog everyday so I may write 2 in one day. By putting the dates I think it will help you and also me to keep track of my progress.
So, today is Thursday December 31st,2009. That's right, it's New Years Eve and we are having RT. What a way to send out the old year. For so many years, starting at the young age of 13, I was playing music on this big night. I played dives, grand ballrooms, small parties and massive functions.It's amazing what people do on that night when they bring out the champagne. That's a whole new blog. I have some good memories of NY eve but for the most part, my memories are not good and I try to forget about them. I know one thing, I will remember Decemeber 31,2009 at 3pm PST.
Happy New Year to all of you. Treament went fine. No complications or problems today.
Day #8 8 Down and 27 To Go.....

Day #7 7 Down and 28 To Go

Day#7 Dermatologist Appointment and Radiation #7
I am begining to have sores in my mouth just like Dr. Holland talked to me about. These are caused by the radiation. Funny how you have to weigh the effects vs. the final outcome of the treatment. He had told me before we started " Donnie, get ready for 7 weeks of HELL", I am begining to see that he wasn't kidding. Look, I see people eveyday in that hospital that have it so much worse than I do but, this doesn't mean that my treatments are easy. I am glad I was told it would be HELL.That is what I prepared for. I do pray for those poor people I see everyday at OHSU.They are young,old,skinny,over weight,black and white people who, just like me, drew the short straw. Just the fact that I am being treated for CANCER, still hasn't quite sunk in yet. I tell Kari at least once a day, " I can't believe that I have CANCER". She is always so strong with her reply to me," You had cancer and after your RT, you will no longer have it". Some of you wonder how I can be so strong about this situation. Well, my wife Kari, is a big part of how I am handling this disease.
I visited my dermatologist today before my treatments. He loooked me over , head to toe, and thought that my Morphea was not responding in a bad way to the Radiation. Remember, It was hard to fine information anywhere in the US about how Morphea would be affected by the Radiation. So far, So good. He said - See you in 4-6 weeks.
Now it was off to the RT. OHSU is a cool hospital ( if hospitals can be cool). One building is at the bottom of a hill, down by the river. The rest of the University is at the top of a hill. Instead of driving to the top of the hill, we took the tram. Thats the cool part. There is a tram that goes from one campus to the other. It is about a 7 minutes ride up or down and it lets you see the real beauty of Portland. Okay, we are up on the hill and going to RT. Treatment went fine as usual. Did I ever mention how nice and helpful the techs are in this department. When I get called in the room, they already have my ESPN playing, thy ask me about the Saints, and they talk about whatever we chatted about the day before. This makes me so comfortable and I know it's all part of their "Master Plan"- like some science fiction movie.LOL. So, treatment done, now I head home. But one thing to remember.
Day #7 7 Down and 28 To Go.....