Day #6 6 Down and 29 To Go

Day #6
Wow, What a day this turned out to be. I have not been feeling 100% for the past few days. Upset stomach and not much energy. My appointment was for 4:30 pm but, Kari also had an appointment for 3pm. My appointment was at the top of the hill and hers was at the bottom of the hill. She followed me to my floor and then she left for her appointment. OHSU has a tram that takes you up/down the hill for free. Plus, it is much faster than getting in your car,driving,parting and then coming bck up the hill.
I was about an hour early for my appointment bt that was fine. There was a football game on TV and I would be fine. Oh, I almost for a tiny little detail. On the way to OHSU, it began to snow, just a little. By the time we arrived at the top of the hill, we were having a snow storm! This was going to be a wild afternoon. Since I was early, the techicians took me 30 minutes early, which was great. I thought we could beat the snow and traffic headed home. When I was finished, Kari arrived from her appointment. At the point I remembered that on Tuesdays we meet with Dr. Holland after my treament. This is to go over my progress and if there are any questions for him. We met for about 10 minutes and proceeded to head to the parking garage. We got into the car, which was freezing, an headed out. About an hour later we were still at the entrance to the parking area! The snow was coming down so hard. It was amazing how muchit was snowing. I know that up to this point we had about 4-5 inches. The funny thing I just like in every city in America, the weather folks had no idea this was coming. Two weks ago they told us Artic Blast 2009 was on the way. For 3 days everyone got ready. Guess what, not one drop or flake of snow. Now its coming down in buckets and they never saw it coming. Since we were not going to go anywhere fast, I just stayed warm and relaxed. About 1 3/4 hours we were told we could go down the step hill, back into Portland. This hill is steep and has 230 dead man curves. let's just say, This is not the place you would want t be when it is snowing. Well, I was there and wanted to get out. After 3 1/2 hours we arived at our warm home. It was amazing how much snow there was. The highways were fine once we got on the interstate. Kari was a little nervous about the steep hill but, I did a good job of getting us out of there. I am writing this on Wednesday at about 1:30pm PST. I am getting ready to shower and head back to OHSU. I have an appointment with my dermatologist today. After this I go for treatment #7. My dermatologists has to check to see how my skin is reacting to the radiation. He will also look at other parts of my body that are affected by Morphea. I will relay that info to the blog tomorrow.
ok 6 Down and 29 To Go

Day #5 5 Down and 30 TO GO

Day #5- Day 5 was a treatment that I wasn't looking forward to. The reason being that I had not been under the mask since my mouth has changed and the mucus started to drive me nuts. My brother Todd is here in Wshington visiting Kari and I. It has been such a good visit this week. He arrived Dec.26 and will stay until Jan.2,2010.
I think he is enjoying our slow pace of life here. Of course, I have all this illness going on, Kari is having problems due to carpal tunnel in both hands and Todd has either a cold or sinus problems. We have had a few laughs about neither one of us making good glue! We took Todd with us and gave him a tour on the way to OHSU. We had such a beautiful day. We were able to see Mt. St. Helens, Mt. Adams and Mt. Hood in all their natural beauty. We arrived at OHSU and took Todd to a higher floor to get an even better look at Portland. I have to say, she sure looks pretty yesterday. We haeded back down to floor 4 for my treatments. Before they called me, I went to the restroom to rinse with a formula to help break up some of the mucus. I was able to clear up alot and felt confortable about having the mask on. They took me on time at 4:30 pm. When I got into the room I had to rinse again just to be sure. I was afraid of getting the mask on and having too much mucus in my mouth and not being able to breathe. Well, here goes nothing. The mask was slipped on and I was ready for treatment #5 . The technicians left the room and I was ready to listen to ESPN and have the time pass by fast. Well,there was a big curve in the road. As all of you should know by now, I bleed New Orleans Saints Black and Gold. Well, Sunday is a day in Saints football history that me and so many other fans like me will try to forget. I had not talked about it or listened to any talk show that was talking about the game. I was ready to watch Monday Night Football and see by some miracle, Chicago could beat the Vikings. So, ESPN is turned on and the first thing I hear is- " So John, give me your take on the Saints game against the Bucs and what to do think will happen to the Saints in the playoffs". I almost broke out of the mask! I mean come on, I didn't need to hear the now. Well, the interview went on for a while and then guess what???? The treatment was over that quick. The interview had helped the time pass by qucikly and I was done with #5 5 Down and 30 To Go.

At this point I feel like I have taken a few steps back. I am not able to talk as well as i had been just 2 days ago. I am not able to drink or eat by mouth. I have tried a few sips of chocolate and strawberry milk. These really fell good on my throat since they are so cold but, I am not really able to swallow them. I will try to eat some pudding today. I was enjoying eating pudding last week but, I don't know if I can get it down now. The feeling in my throat is that it seems to be swollen and not able to get things through. All of the information we have says to keep trying different things. I must keep my throat muscles active. If I don't use them, scar tissue will build up and that could cause other problems. I am also doing tongue and neck exercises 3 time per day for the same reason. I know I have said many times how I would love a good cold glass of iced water. Well, I'll say it again. I would love 2 glasses of iced cold water. Next time you drink a glass of water, take your time and enjoy it, things in life can change pretty quick.

December 25,26,27 2009

I didn't have treatment over these days but boy, have things with my body changed. Over the past few weeks, I was told that side effect wouldn't start until about the second week. Well, IT happens. Over these 3 day things have changed. Here is what I am going through at this time. My lips are swollen and bleed at night. My mouth feels like someone cut me with razor blades. My throat feels like I have been eating sand for a month. I have a prescription for meds to ease the pain in my throat. This medical is a 2 part liquid that is mixed and gorgal. This seems to ease the throat pain for a couple of hours. Since the return home from the hospital, I have not been able to eat, now I am not able to drink either. This is something that hits me the hardest. Not being able to drink something cold, any time you want it. This hit me hard when I first got home but after a couple of days I was drinking. I didn't tell the doctors but, I was enjoying it so much. I was prepared for these side effects but, not yet! I wanted to drink just a little more water before this happens. I have been told that some of the side effects will stay with me up until 2 months after I finished treatment. Now, that is something to look forward too...lol
I have also installed a humidifier in the bedroom. Last night,Sunday, was the first night with it so we will see.
One other thing I didn't mention is the saliva problem. This is realy bad and could stay with me for a while. Saliva is made up of 2 different components : water and heavy thick mucus. At this piont, the water is not being produced and all that is in my mouth is the thick mucus. I don't like it and it can scare you sometimes. I am constantly rinsing with a cocktail made of: water, salt and baking soda. This does help break down the mucus. Sometimes it is so thick that you can not catch your breath when you what to. This is the scary put. You go to take a breath and ..... nothings there. I have learned to calm down , cough, and things will work out. What bothers me is that since I am getting these side effects early, will they get worse, easier, or is the the worse. The doctors were worried about how radiation would affect me since I have this other condition called Morphea, well, I guess they now know. I am glad that I meet with Dr. Holland tomorrow. I hope he can answer a few of my questions.

Day #4 4 Down 31 To Go

Day #4 Well, this day would end up being the easiest day of treatment up this point. My appointment was for 1:30pm , they were trying to get out early since it was Christmas Eve. They took me in as soon as i arrived and signed in. Kari wasn't feeling well so I drove myself to OHSU for the first time. They laid me on the table and got the mask over my face. I will be putting up a picture on this blog of the mas in action. I am going to have someone there take a picture of me sometime in the next few days. Once Iad the mask on, I was ready for the treatment. It seemd like only 5 minutes and I was done! Wow, could 20 minutes have flown by so quickly? Well, I got out and into my car and headed home. They was only a little traffic, which made the ride home not bad at all.
4 Down 31 To Go

Day #3 3 Down 32 to go

Day 3 was by for my easiest day so for. We left home at 5pm to beat the traffice and to our surprize, there was no traffic. We arrived at OHSU in 26 minutes. I figure that I would be early everyday so that if they are running fast, I could get it done and get out of there quick. Well, no such luck today. They came out at 5:45 and said they would take me in 15 minutes. Well, in 20 minutes they came to get me. Not bad timing when you think about how long all of you have waited in the waiting room for a doctor's appointment.
The technicians set up my table and I proceeded to get undressed. No, not naked, just undressed a little. They like me to just keep my t-shirt on when having the treatment. Of course, my pants and shoes also stay on. Remember, they are aiming the radiation at my tongue and neck.
Once I was on the table and ready , they were ready for the dreaded mask. I asked them to let me take a couple of deep breaths and I was ready. They put the mask on and locked it down. Today I seemed to have lined up perfectly because the didn't have to move me at all. The tech said we were ready to get started. I asked them about my ESPN and they said the were having troubles with it today. It was fading in and out. I said that is better than nothing so, I began to listen to a play by play of a football game with the sound fading in and out. If you have never experienced this ...... you are not missing a thing. The one thing it did was help me keep my mind if of the treatment and the mask.
After, what seemed like 15 minutes, the tech said "Okay, that's it". I was like- what? I didn't hear her come into the room so at first I was a little startled. She removed the mask, I got dressed and said, "see you guys tomorrow at 1 p.m." That's right folks, treatment on Christmas Eve. However, there will be no treatment on Christmas Day.
When I went to the waiting room, Kari was there waiting for me. The time was 6:34 pm. We couldnt believe how quick the treatment was. We got into the elevator, went to the parking garage and then headed home.

So for, I am not having any of the side effects that will come with the treatment. I have recieved some special mouth rinsing formula that I will begin to use in a few days. It helps break down the mucus that will form in my mouth and throat.

3 down and 32 to go.

I will add a little info from time to time about when and how I discovered I had cancer and some of the stories that have taken place before this blog started. Some will make you laugh and some my bring a little tear but allof the stories will be honest and true. I may even add a few stories from my 2 sisters trip to Vancouver to help us when I was having these surgeries.

Back at the end of August 2009 I was on a trip to New York. For those of you who don't know me, I travel the United States from sea to shining sea , as part of my work. I work for the most unblievable people in the world. I am so lucky to work for this company.
On my last night of the trip, I was sitting in my hotel room watching TV and getting ready for bed. I had a very early flight the next morning. Thank God the flight was headed to Portland, Oregon and not to another city to see customers. I started to take my medicine and it felt like on of the pills had become stuck to my tongue. I thought this was really weird. I tried to get it off with my finger but, I had not luck. I went into the bathroom, turned on the bright heat lamp and looked into the mirror. WOW!!! I looked at my tongue and could not beleive what I was seeing!!
It looked like to button mushrooms growing on the back middle of my tongue! Needless to say, I was scared. I begin to panic and cry. The next thing I did was call Kari at home. I told her the story, which was tough while I was crying. She calmed me down and made me understand that things would be alright. I don't know what I would have done without her at that point. She has shown everyday why I will be spending the rest of my life with her. She is my angel.
I was able to calm down and get a couple of hours of sleep that night. I caught my flight and headed back home.
Kari had already arranged an appointment with a Ear, Nose and Throat doctor when I arrived home. We went directly to OHSU and my appointment was with a well repected ENT surgeon.
At first he looked at my tongue and he said, " I am not sure what that is, I have never seen anything like that before" Now if you what to hear something from a doctor, it is not the words , "I have never seen anything like that before."

I will continue that story on the next blog.
I still have not bought 1 present as of yet. I hope to go shopping after my treatment today. the weather here in Vancouver is 39 ,foggy and no rain expected.
Also, rememeber this. I live in Vancouver,Washington not Vancouver, B.C. which is in Canada. Vancouver, Washington is located in southern Washington , on the border of Oregon. I live 5 miles from the border, which is the Columbia River.

once again
3 down 32 to go.

Day #2 2 down only 33 to go

Day 2 was kind of unique. It's not often that you go to a doctors appointment at 6 p.m. but that is what I did on my 2nd day. This was not bad because I was able to stay away from traffic problems both to and back from OHSU. By the way, I live in Vancouver, Washington and my treatments are at OHSU in Portland, Orgeon. This is about 11 miles from my home. Sometimes , because of traffic, this drive can take up to 1 hr each way! So, 6 p.m. really was a nice time for us.
Since we arrived early , because there was little traffic, they called my name earlier than 6 p.m.. When I was placed on the table I asked the technicians if there was a way to calm my nerves about wearing this mask. They told me one thing and that made all of the difference in the world. They assured me that if for any reason I needed to pull my head up, the mask would break loose from the clamp. Just knowing that made me so much more relaxed. They had told me before that they have camers in the room and if I need anything, just wave my hands and they would be there in a flash. I was not comfortable with that plan. Now that they said I could break loose from the mask clamp, I was like a new man. I told them, let's get busy and get this treatment done. They clamped me down and left me alone with my ESPN. Wait, that's not ESPN, that's music. I do not like to listen to music when I am in this type of situation. I wanted my ESPN. Next came a great song on the radio- China Grove by the Doobie Brothers. Here comes the great guitar intro and now the music---------stops and here is ESPN. Well, I couldn't complain, I got what I asked for.
I layed there about about 15 minutes and the the technician came in to tell me the good news. The computer had shut down and we would have to start all over again. Music to my ears......
She offered to take the mask off of me while we waited for the computer to reboot but being the man that I wish I were, I told her that I would just leave it on and wait.
In about 10 minutes we were up and running again. There were soft noises, hard noises, high pitch noises and then no noises- we were done.
After my treatment I was going to meet with my radiologist. This takes place every Tuesday.
We met for about 20 minutes and he assured me that I was doing fine and we were good to go.
Oh, did I mention that I am a huge New Orleans Saints fan? I bleed black and gold. Well, my doctor happens to be a Dallas Cowboy fan. The Cowboys put a whipping on my Saints this past Saturday and I had to eat crow. Having a few things in common with Dr. Holland, sure makes my visits with him more upbeat than most doctor meetings. Dr. Holland is a great person and he is one of the reasons I remain upbeat about my Radiation Therapy.
Okay 2 down 33 to go.

Day #1 1 down 34 to go

The first day of RT ( Radiation Therapy) is one I was looking forward to for one reason only. It meant I only had 34 more to go. The most nerve racking thing about this treament so far has been the mask that is put over your head for the treatment.
A week before the treatment, you are brought in to be fitted for this mask. It is a mesh type material that seems to have been dipped in hot wax. It is put over your face and head, while you are laying down on a table. It takes a few minutes but eventually, it cools down. It is very hard to breathe with this on and I almost had a panick attack. I blamed the medical assistants for not giving me enough information on what to expect. I told my doctor about this and I think he chatted with his people about my comments. They are nice people but, I think they just get to relaxed with their job and for get the minor details.
Now the first treatment.
I was asked what type of music I like before we got started. I told them I would like ESPN so, they tuned the radio to ESPN and it was coming through the speaker system , loud and clear. This does help to distract you from what you are going through.
I was put on a table and for the next 20 minutes they moved me back and forth making sure to get my spine in the correct position. Next, they put the mask over my face and head. WOW!!! this will take some getting used to. It is very scary and takes a while, if ever, to ge used to. The mask is locked in and you are not able to moved you head 1 mm. Your shoulders are also locked into position. After a few seconds of almost panick, I relaxed and started to slowly breathe through my nose. This relaxed me and I began to realize that this would not be as bad as I had thought. After 30 minutes, the mask was unlocked and I was a free man. WOW , what a nice feeling to get that off of my head.
All of the information I recieved form brochures and through conversations with the docotors, told me that I should not have any side effects until a least the 2 week mark. Well, I may be a coincidence but, I woke up the next morning with sore throat. Maybe I just caught a cold at the same time but regardless, I now have a sore throat to treat.
Okay, day 1 is now in the books and only 34 to go.

The subject and reason for this blog

I am a 49 year old male living in Vancouver,Washington. This blog will follow my daily trip to Oregon Health and Science University , where I am having radiation therapy for cancer of the head and neck area. My cancer was found in my tongue and also in my neck lymph nodes.
I also have a very rare condition called Morphea. It is a form of scleroderma, which is a condition that hardens the skin of your body. My Morphea is a very severe case that I have been livin with for 5 years. It has spread to my legs, feet, arms, neck , face, and stomach areas. When I was scheduled for surgery, my doctors were not able to find any information about Morphea as it relates to cancer . This included no information fo treatmen such as radiation therapy.
I am writing this blog for a few reasons. The first is to help anyone else who may have the same conditions I have and they have no one to turn to for information. I am also doing this for self therapy. I want to be able to see my progress and I think it will help me get through this whole 35 treatment plan. The other reason to write this blog is for family and friends who want to know what my wife and I are going through with a daily update.
So, here we go with day 1.