Tuesday, October 28, 2008

medications and delays

Yesterday I received some of the medications that I will need during treatment. I read the information sheet that came with each medication. One medication had an info sheet that didn’t belong with it. I called Medco and talked to a pharmacist about this problem and was told that it was okay and that the drug was in the same class as the drug that was prescribed. I am not comfortable with that and will talk to my doctor today or tomorrow about this situation.
Just the reading of the info sheets on these drugs will cure constipation!! The list of problems that might occur are down right scary. I have early Glaucoma in my left eye. All three meds say that they can affect Glaucoma. I called my opthamologist after reading this and he told me not to worry. He said that he would monitor my situation.
I received a phone call just now while typing this. It was from the radiation nurse. She stated that everything has been put on hold. Their department has hired a new physicist, and it is going to take him until sometime next week to finish my program. I was told that I shouldn’t worry, and that everything was okay. I don’t like this at all! I was geared up for starting radiation and chemo on Thursday. Now it will be sometime next week!! Bummer!! I feel that delay could give the cancer time to spread. I did receive my prescription of Ativan yesterday and it did help me sleep last night with little hang over this morning.

Sunday, October 26, 2008

the emotional rollercoaster

It seems as though I have lost control of my emotions. I have been very upbeat on some days, and then without any reason I find myself having a bummer of a day. I have tremendous support from family, friends and fellow church members. I try to turn my will and my life over to the care of god. Some days I am more successful at this than others, but I try anyway. Tuesday I was feeling very upbeat because of my positive dental x-rays. This lasted until Friday afternoon when I was on my way to my daughter's house in Richmond. I just didn't have a whole lot of energy. I went to bed fairly early that night and woke up feeling down. I just couldn't seem to shake the funk. I came home in the early afternoon and my wife said that a guy who I had been trying to contact had called and would only be home for a few more minutes. He has a serious drinking problem and I was trying to reach out to him and offer him some help through AA. I talked to him for maybe fifteen minutes and listened to his depressing story, after which I hung up and simply started to cry. Tears seem to be very near the surface a lot lately. They most often come after another person shows me that they care, or tells me that they are praying for me. It touches me more than anyone who hasn't experienced it could possibly know. I have a prescription for xanax. In the past I have taken a small portion of one of these pills on nights where I couldn't quiet my mind. Lately I have been taking a whole pill before going to bed. I am being switched to Ativin shortly. I am wondering if maybe the xanax could be causing the bad days. I will find out shortly when I switch. More than likely though it is just part of the whole cancer thing. We will see.

Tuesday, October 21, 2008

pre chemo dental x-rays

I had my full set of dental x-rays today and was very relieved that there were no problems. I called the radiation doctor's office and asked if the dcotor wanted to see them, and the nurse said that he didn't need them. He simply wanted to be sure that all dental problems were treated before the radiation began. There is so much info. coming at me that I can't process it all. Things get mixed up. For example, I was sure that a nurse told me the other day that the doctor might want to pull some of my good teeth because they might be affected by the radiation. Anyaway, I was sure glad that nothing needed to be done. A little good news goes a very long way these days. The dentist told me to call him at any time. He told me that he would fit me in somehow no matter what. Wow! I am still over whelmed by the love and concern of so many people. It is truly unbeleivable.
The dentist gave me a prescription for a special tooth paste that is very high in flouride. I will brush and floss after eating anything using the standard tooth paste, and then I will brush at night with the flouride tooth paste. I am not supposed to rinse my mouth after the night time brushing. I spit out the excess and leave the rest in my mouth. Mmmm! I bet that will taste good! There will also be a special mouth wash, and because of radiation damage to my saliva glands there will also be a type of artificial saliva that I will be able to spray in my mouth. Tomorrow Pat and I will attend a healing service at our church followed by a session in learning centering prayer.

Monday, October 20, 2008

orientation at cancer center

Oct 20th,

I was wrong when I said in yesterday's post that Pat and I would be seeing a video today at the chemo center. One of the chemo nurses simply went over everything and gave us some booklets to read. They are very patient people at the center. I am used to seeing an internest who is on a rigid schedule. The folks at the cancer center take all of the time that I want. They are very caring, compassinate people. Tomorrow I get full dental x-rays. I told the chemo nurse today that I stay on top of my dental health and there shouldn't be a problem. She told me that the doctor still might want to have some of my teeth pulled. Man!!! I hope that isn't the case!! It seems that I get one bit of bad news digested and then here comes some more.
I told the nurse today that I wanted to get started. I want this over with. The target date is still the 30th of the month. As an additonal kick in the tail...I sprained my back today starting my rototiller!!! UGHHHH!!

Sunday, October 19, 2008

video of what to expect

Oct 19

Tomorrow Pat and I make a trip to the cancer treatment center here in Gloucester to watch a video that will tell us what to expect during the treatment. There will also be a session with the chemo nurse.
I have felt really upbeat over the last few days. I have been deeply touched by the large number of well wishers. I must have done a few things right in my life. I must be on the prayer list of half a dozen churches. I am certainly not looking forward to the chemo/radiation experience, but I don't fear it. I have been told that my attitude will mean everything, and right now it couldn't be better because of the support that I have received. I have also been told that people who have a large network of folks that they can communicate with when they might be feeling a bit down do much better also. I have that. I feel very blessed.

Friday, October 17, 2008

visit with chemo doctor

Pat and I met with the chemo doctor today. We were told all about the treatment. It will begin on the 30th of Oct. and will be administered only three times during the duration of the seven weeks of radiation. Each treatment will last about six hours. The first step will be to do a blood test. A blood test will be performed every week. Then a couple of bags of a saline substance will be run through my veins. This will flush out my system. Then ( and I have forgotten how many bags) the chemo will be run through the same IV. UGHHH! I asked about nausea and was told that they can manage that really well now days. Some anti nausea medicine will be administered through the IV and I have prescriptions for a couple more. The degree of nausea differs with each patient. We asked about possible long term problems and were told that some permanent hearing loss could occur as well as some kidney damage. I was given a hearing test by an audiologist so that they will have a base line. I can actually hear really well which is amazing after spending 36 years at various auto plants. Pat heard these results also. I guess that I will no longer be able to pretend that I don’t hear her. She is in the know now.
We also asked about pain management and were told that I should be able to function until about two weeks before the end of treatment. Then I would be given liquid morphine, and hydrocodone.. She said that the last two weeks before, and the first two weeks after the completion of the radiation would be the worst. She expected that I might lose as much as forty pounds. Phleghm will be a problem and the only way to get rid of it will be to cough it up. That sounds like it will be lots of fun with a sore throat!
The radiation doctor said that the latest studies have shown that people that delay the implantation of the feeding tube do better in the long run. The chemo doctor disagrees and believes that it should be in place before the 2nd round of chemo is administered. She stated that I won’t want to have the implantation procedure done after I get sick. I have to decide between the two choices. I still have time.
We also talked about anti anxiety medicine and I told her that I had a prescription of xanax and have been using it to sleep since I got the bad news. She is giving me a prescription for Atavan also. Atavan can disolve in your mouth and won’t have to be swallowed.
All in all it was a good day. My spirits are up. I feel happy and trust that I will beat this.
I will make an appointment for complete dental x-rays for next Tuesday or Wednesday. Any problem teeth will have to come out before chemo starts. I have kept up every 6 months on my dental and am praying that everything will be okay with my teeth. I was told that saliva helps protect my teeth and gums and dental hygiene will be of utmost importance. I will be using a special tooth paste that among other things is high in flouride.
I go to the chemo lab on the 20th for more info. I will watch a video and listen to a nurse talk about what to expect with the treatment.
It’s rainy and windy here today which always makes me think of Robert Frost’s poem, My November Guest. Type that in google and have a look

Thursday, October 16, 2008

Yesterday Oct 15th I asked god to please, please help me place my life in his hands. I have learned through AA that gods plan for me is better than anything that I have planned for myself. I asked for peace. I have been very upset regarding the cancer, the treatment, and the probable side effects of the treatment. My mind would not give me a moments peace. It was constantly racing from one morbid thought to another. I was even at some times wondering who would come to my funeral. I was visualizing the agony of the sore throat from the radiation and the stomach tube. I was overwhelmed by it all. It is a disease somewhat like alcohol in that it affects all of those around you also. My wife has been having hot flashes again which have not been present for a long while. My daughters are worried as hell. Anyway, I got some news that for some reason I hadn’t heard before when talking to the oncologist’s nurse yesterday. She told me that my cancer was a stage one. I was so happy I almost cried. A little bit of good news goes a very long way right now! A peace came over me in the late hours of the afternoon. It felt absolutely spectacular! I certainly believe that it was an answer to a fervent prayer. I asked god again this morning for his peace and once again for his help in trusting him with my life no matter what the outcome. Unfortunately I later found out that I actually have a stage 3 which means that it is in more than one area. I felt like hell after thinking that I was a stage one and then finding out otherwise.
Today we go to a clinic in Richmond to get a second opinion. I expect it to be the same. Tomorrow I have another CAT scan, and a fitting for the mask that I will wear during treatment. Thursday I meet with the chemo doctor. If all goes well, the treatments will start at the end of the month and will run until approx. Dec 12th.

I was recently diagnosed with oral cancer. I noticed a swelling in the lymph gland area in the right side of my neck. I first thought that the gland might be swollen because of an infection in my left knee. I had contracted cellulites from a skin injury. I assumed that the gland was simply doing the job that it was designed to do. A week later the cellulites was gone but the swelling persisted. I decided to go to the doctor. He thought that I probably had a saliva gland with a stone in it and placed me on an antibiotic. Ten days later things were the same and he sent me to an ear nose and throat specialist. This doctor sprayed a numbing substance up my nose so that he could send a tube down my throat to have a look. He saw nothing but wanted to do a needle biopsy on the lump. He told me that he was suspicious and that it may be malignant. I was speechless as my mind started to race. Cancer! The killer! He did the biopsy which wasn’t to uncomfortable and told me that it would probably be a week before I would get the results. We left two days later on a trip to Michigan to see kids and grandkids. I called the doctors office several times over the next few days and didn’t get anybody. I left messages for the doctor to call me on my cell phone. He didn’t call. I finally called one last time and told the recorder that I was sitting on pins and needles and needed an answer as to what the biopsy had shown. I was watching TV at about 8:00 P.M. that evening when the doctor called. He told me that the results had confirmed his suspicions and that it was malignant. I was standing up while talking to him and my knees almost buckled. My heart began to race, and I started trembling. We talked for a few minutes and he told me that when a gland in the neck has a malignancy it generally means that there is another spot somewhere in my head or neck that was also malignant and that the cancer had spread to the gland from that site. An appointment for a PET scan was made. A PET scan involves an injection of a mildy radio active substance that has a sugar base. (as I remember). I was then made to sit in a recliner and completely relax for about a half hour. I was then taken to the scanner which is basically, if not the same as a CAT scan, The tumors absorb the sugar at a faster rate then the other muscles and so those areas light up. Another appointment was scheduled with the ENT doctor and my wife and I were told that I had Squamous Cell cancer at the very base of my tongue and in my lymph node.. He again peered down my throat with a scope but could see nothing. He told me that the treatment for this was a combination of chemo and radiation and that there would probably be thirty five radiation treatments. Of course we asked what my life expectancy might be.
and he said that with treatment 60 to 65% were still alive after five years. I am still getting chills thinking about this as I type. Those might be great odds for Vegas but they were way lower than what I wanted to hear. That should have been enough info. For one day. I should have gone home and digested this info, but the doctor asked me whether I wanted to have an appointment set up with the radiation doctor and I said yes. Unfortunately there was an opening at 1:00 P.M. that afternoon. We said okay and went to lunch. I strongly suggest that there should be a day or two between the original diagnosis and the first appointment with the radiation doctor. Too much bad news comes at you to fast otherwise. You need a little time to absorb what you have already heard. The radiation oncologist was a very gentle man of about my age which is 65. He told me what to expect. He said that I would have chemo and 35 radiation treatments and that I would get an extremely sore throat. My saliva glands would most probably shut down maybe forever but most likely I would get some use after healing. He also told me that I might lose my ability to swallow and that a feeding tube would be inserted through the wall of my stomach. I may lose 10% of my body weight also. I may have to have a trach in order to breath although this was unlikely. I would also feel extremely fatigued. I also needed a full set of dental xrays and any work that needed to be done had to be done before radiation could begin. That included extractions if necessary. We talked with him for approximately an hour and then he left and his nurse came in. My wife said that I asked her the very same questions that I had asked the doctor. It was as if I hadn’t heard a word that he said. She told me that my eyes were glazed over and she suspected that I was in shock. I believe that she drove home that day. I don’t remember. My sister and daughter wanted me to get a second opinion and we set up an appointment at the Massey Cancer center in Richmond. The doctor at the Massey center agreed with the diagnosis and treatment which made us feel better.
Yesterday, Oct 15th, I went to the radiologist and had the CAT scan that will be used to set up the IMRT machine for the radiation treatments. I was also fitted for a bite guard and a mask that would hold my head completely immobile. A softened gel was placed in my mouth to cover my upper teeth. I was instructed to bite down on this as it hardened. There was a protuberance on the front of the bite guard that stuck out of my mouth and inch or so. Next a large sheet of warm wet netting was placed over my face and gently made to conform to my face exactly. After it dried and stiffened it was clamped to the table. The protuberance was then attached to the mask. I could move nothing. My adam’s apple rubbed as I swallowed. A ten minute CAT scan was then performed. I was told that I could raise my hand at any moment and that would signal discomfort and the radiologist would stop and come in to insure that I was okay. I felt mildly claustrophobic as I thought of being attached to the table, but all in all it wasn’t too bad. I asked to have a look at the beast that will perform the treatments and it is a big machine. It didn’t look too frightening.
Today I have my first visit with the chemo doctor. I am certainly feeling some apprehension. I have a list of questions to ask, one of which is would a visit or two to a hypnotherapist be of any benefit. I have heard that hypnosis can sometimes minimize reactions to treatments of various sorts.
Radiation is expected to begin on the 29th of Oct. My best guess is that it will be completed by Dec 12th. My resistance to colds, etc will be low so I will have to stay away from people who may be sick.
Sometime ago I asked god to please bring me closer to him. This has certainly done that.

Oral cancer. My personal journey

Oral cancer. My personal journey.
I was diagnosed with oral cancer recently. I am going to try to document my journey both emotional and physical for as long as I am able. Normally when I write something I let it rest for a day or two and then edit it. I might do this two or three times. I am not going to do that here. I will write it as I experience it. I am late getting this started so the first two or three entries will come from memory and may conflict somewhat. I feel that I am now caught up and all blogs from today on should be completely accurate. The news, that I have cancer terrified me at first. It still does when I let my mind wander. I have been taking an anti anxiety medicine which helps somewhat.
The outpouring of love and offers of help have completely overwhelmed me, and have caused me to breakdown several times. I try to hold it together but sometimes I simply can’t. People are wonderful when the chips are down. I have been placed on prayer lists at many churches. I am very thankful.

Monday, October 13, 2008

Incumbants! Vote em out!!

A friend of mine here in our town has the opinion that all incumbents should be voted out of office at every election. One term for everybody. Get rid of the career politicians. He has convinced me. Here we are in a terrible financial situation in this country. Even our presidunce would agree with that were he honest about things, and I guess that is doubtful. A multi-billion dollar bail out bill didn’t clear the legislature until billions more in pork were tacked on. What that says to me is that the boys in Washington are only interested in their re-election. They had to tack all of this pork onto the bill so that they would look good to the home boys. “Looky what I gotcha boys! Bridge to nowhere money! Re-elect me and I will keep the money comin’” The founding fathers took a little time away from their farms and businesses to help run the country and then went home. I believe that is the way it should be.
If you are fed up with the banking fiasco, the mortgage crisis, the FDA, The wars, The poverty, The medical insurance costs, the social security debacle, etc. etc. Don’t you too think that this may be worth a think?
We as a people have paid no attention to what was happening in Washington. We were so busy with our lives that we simply let the boys in Washington do their thing. I would bet that 75% of the people in this country don’t know their congressman’s name. What does that say? They walk in to the voting booth and pull the lever for the president and then they are stymied. They see names that they recognize and pull the lever. This year, take a few minutes to find out who is who before walking into the booth and then vote the bums out!
The Ol’ Curmudgeon