Surviving Oral Cancer

First week of radiation done

2008-05-13T08:24:00.003-04:00

Well, let me tell you. This radiation stuff, they can have it! It sucks! I had three treatments last week. On Friday, the last of the three, I started feeling a bit ill around 4:00 and it got really bad.

On Sat. I thought I was gonna toss my cookies all day long. The pain was horrid. ( good thing I have an ample supply of various pain medications.) By that night I did choke down some green beans and mashed potatoes and lots of jello. Sunday I eat more jello and by the evening I was able to eat some dumplings with green beans and mashed potaoes. Monday I had gravy and toast with eggs. OH and jello.

I went to the center and the doc gave me a script for the nausea. He gave me a shot yesterday and I tell you I feel so good today. Hopefully this will keep the nausea away. That taste and smell, is like a cross between metal and flesh. Best I can describe it. I have had that since day one. The nurses say I am crazy. Well, I know what I taste and smell. I have talked to others that say the same thing. I felt like telling them that they can lay down and I will zap them and se what they think. They declined for some reason.

Now the Doc tells me that he is not suprised at all. Everyone takes radiation in a differetn way. He said in the head and neck region it is worse. When you radiate this area everything is worse for you. The radiation hits the nucleaus of the cell and kills it off and that cause bad inflamation hense the pain. Next will be pain from the burns the radiation causes but we just have to deal with it the best we can. Using a mouth wash helps with the smell and taste some. Use a alcohol and peroxide free based wash though. Otherwise you will be burning the tissue that has been radiated and it will hurt badly! I use Oasis moisturizing mouthwash. This also helps a bit with dry mouth too. It has a mild mint flavor. Sucking on mild mints also help suring the day with this smell and taste issue.

Pls notice also the story the paper wrote about me was horrible and incorrect. They did not see the need to reprint the story. So see this link to read how the story should have been written by the South Side Times.

Setting the Story Straight part two

Setting the Story Straight Part Two

2008-05-13T02:23:00.002-04:00

I was interviewed by a reporter from a local newspaper, who wanted to write a story about me and my oral cancer. When the article was published on April 24, 2008, I was unhappy with the result, which I thought did not fairly represent me or my attitude towards cancer, and so I have rewritten the story as I wish it had been told in the first place. When the reporter wrote the story it was that of a man who had cancer. Yes, I do have Oral Cancer but this is a story of courage, strength and awareness.

I was first diagnosed in January of 2008. My Dentist had the first suspicion of the cancer. Later I went to an ENT who removed one tonsil and did several biopsies. They all revealed Squamous Cell Carcinoma. The tonsil and area around it was full of cancer. The left side of the tongue at the base and part of the left midline of the tongue has cancer also. I later refused a surgery which would take part of my tongue. Even with reconstructive surgery, my diet would permanently be changed. I would be limited to foods with sauces and gravy. Simple pleasures of pizza and steak would never be again. I later learned that it spread into the lymph nodes as well. I talked to many Doctors and did a lot of research and decided to do EGFR therapy and Radiation in an attempt to rid the cancer. I later had my teeth removed by an oral surgeon to avoid later complications with the radiation. My teeth and gums were in bad shape and saving them was not an option. I have had bad pain from the tonsil being removed at age 47. I had even worse pain having the teeth removed and jaw being filed down. I never thought that the pain and depression it caused would have affected me in such a negative manner. I had come to the realization that I had cancer. That was the hardest part.

According to the last data available, Oral Cancer survival currently is only 50 percent within the first five years. I tell you this to tell the real story! So yes, I have cancer. Yes, it sucks! No, it is not fair. Life is full of challenges. We do not always like the curve balls life will through at us. Cancer is a part of my life, it is not running it. I choose to live. This is the most important thing. The Doctors will do about ten percent of the work. You have the will to do the other ninety percent! Faith, courage and determination can and will carry you through. It can mean the difference between life and death. You choose! In choosing the treatment plan for yourself, you must be your own advocate. ASK questions, research your illness and do not accept the first Doctor who comes along as having the final answer. That is furthest from the truth. A doctor will side with his or her own profession. A surgeon loves to operate. An oncologist loves to radiate or induce drugs. You must learn of your disease so you can make an educated decision on the proper treatment plan for you. Take the bull by the horns and take charge of your treatment. No one else will. It is up to you.

More than 34,000 Americans will be diagnosed with oral or pharyngeal cancer this year. It will cause over 8,000 deaths, killing roughly 1 person per hour, 24 hours per day. Of those 34,000 newly diagnosed individuals, only half will be alive in 5 years. Oral cancer is particularly dangerous because in its early stages it may not be noticed by the patient, as it can frequently prosper without producing pain or symptoms they might readily recognize, and because it has a high risk of producing second, primary tumors. This means that patients who survive a first encounter with the disease, have up to a 20 times higher risk of developing a second cancer. This heightened risk factor can last for 5 to 10 years after the first occurrence. There are several types of oral cancers, but around 90% are squamous cell carcinomas.

For a great support group on line, go to www.oralcancerfoundation.org . They are all a group of people who have head and neck cancers or are caregivers for those who are afflicted. So what can you do? Go to an oral surgeon who deals with cancers and get tested. A Dentist can also do this exam. But it must be a properly administered exam. Checking under the tongue, around the cheeks, roof of the mouth and palpitation of the lymph nodes. We all know self exam for breast cancer or to get a rectal exam for colon cancer. An oral exam which is 100% painless and is only five minutes of your day can help with early detection. This is the main key, Early Detection! A smile can be worth a 1000 words but one tumor detected early, can be a life saver.

Setting the Story Straight

2008-04-25T06:58:00.003-04:00

One of the first rules of journalism is that the first rule can change depending on what the editor demands of you for that particular moment. Even through all of the confusion of finding the proper headline to meeting the deadline, one thing remains constant with all good journalists. Journalism thrives on facts. As such, it can be fairly said that the single most important rule is to insure the accuracy of such information being conveyed to the public.

I was approached a week ago to do an interview. I was elated to do so. It was a wonderful opportunity for me to raise the awareness for oral cancer. At first I was put out by the lack of preparation by this young reporter. The interview started off with him asking me to tell a bit about myself. After doing so, he looked at me with a blank stare as if to say, Is that it? We talked about how I first thought there was a problem to how I now choose to use this as an advocacy to raise awareness for Oral Cancer. After an hour and running his tape recorder out twice, I gave him the blog address so he could get all the facts and it could answer questions and give him a better understanding of what I am trying to accomplish. After leaving his office, I felt the story was not going to come out properly. But then I felt perhaps he was just nervous. Perhaps, being young and new, the editor will guide him and assist with a properly written story. I mean, we all have to learn our craft at some point.

When the story was released I was at first impressed. They had a nice 4x3 block on the top of the front page with a nice tag line directing you to the main story. And the story that was written was nice. Unfortunately it was not accurate.There were many misquotes and facts that were either in the wrong order of events or just flat wrong.I did not seek the advice of a EMT who suspected cancer, It was an ENT. The oral surgeon ( who was great by the way) did not advise me to have a radical surgery that the paper spoke of. It was the second ENT that I was referred to. The list goes on and on. Reverting back to the original point of journalism relying of facts.

They failed this story on two counts.
First they failed to report the facts properly. The second and most important of the two, the main focus was not to be a man who had cancer. It was to be, how a man with cancer turns a negative into a positive to help others by raising awareness. It is about setting an example of strength and courage. I suppose had they profiled the man rather than the disease, and done the homework, all would have turned out better than I had expected.

One quote they got right is what I shall leave you with today."The most important thing is being your own advocate and find out what is best for you." I will further add, " Doctors can only present their recommendation for treatment based on their experiences. You must gather all information from all sources available including other types of Doctors and decide what the best treatment is for you."

What IS a Survivor ?

2008-04-24T09:39:00.004-04:00

Many have said, " How can you be a survivor if you are still going through treatments?" "How can you be a survivor if you have not been told you are cured?" Please allow me to explain!

First off, let us see what Webster has to say. The actual meaning is as follows. Root word is survive.

The intransitive verb of that word means:
1 : to remain alive or in existence : live on
2 : to continue to function or prosper

The transitive verb means:
1 : to remain alive after the death of (he is survived by his wife)
2 : to continue to exist or live after (survived the earthquake)
3 : to continue to function or prosper despite(they survived many hardships)

Survivor is a noun. So, to be a survivor we must have remained alive and continue to exist and function despite any hardships such as a disease like cancer.

I have Oral Cancer, I am alive and continue to function despite it. I may not function to my fullest potential, but I still function. No where does it say we have to have been cured before we can be deemed a survivor. This as many words in our language, have been misconstrued to have other meanings due to how we may use them in a sentence. Because of that structure we assume the meaning of a word without even looking to see if it was used correctly. I am just as guilty of this as anyone. That does not make it right. But, we are all human.

So what is a Healthy Survivor? That is simple. Dr. Wendy Harpham explains this the best.

Healthy Survivor: A survivor who gets good care and lives as fully as possible is a Healthy Survivor. Wendy S. Harpham, MD

And that folks is exactly what I do. It does not matter how much time has elapsed. It can be 1 hour, 1 month or 20 years past your diagnosis. You have survived not matter what that time factor may be.

Any time of survival, especially Healthy Survival is important, crucial and a gift.

Just having a Darn Good Day

2008-04-21T09:47:00.004-04:00

Most of the posts have a deep meaningful purpose. Many times they are not written with that intention, but do impact someone somewhere along the line. This time, I keep things light-hearted. I am just having a darn good day. Actually the whole weekend went pretty well. Saturday started out kind of crappy. By the evening I was feeling better. I went to Wally World to get the food for the week. I dared to get a big ol fat steak. I had managed to eat a whole piece of pizza earlier that day. I would have eaten more if my dentures had not been slipping. Darn things anyhow. Have I mentioned I hate those darn things?

I got up Sunday and felt even better. I went out to eat and did a bit of window shopping at my local Sam’s Club. (That is two plugs they owe me for.) And then later on that evening I dared to fix the one dinner I had longed for. I had longed for two things since this whole mess started, to eat pizza and eat steak. Things I have not been able to eat since December. My diet has mostly been of the soft food variety, soups, broth, gravy and the like.

So, I had already prepared for it earlier. My dentures were adhered with triple the amount of Fixident. They are not going anywhere. I Had a heck of a time taking them out that night. I seasoned that bad boy up. Cook it to a perfect Medium Rare. Got myself a drink, sat in my chair with a fork in one hand and knife in the other. I patiently cut my first bite with much anticipation. As it entered, my mouth experienced a most seasonalistic orgasm। YES, It was the best bite I had in MONTHS. I sat like a kid eating candy for the first time. Cutting and enjoying every tantalizing bite. It did take a while; big bites hurt my gums some. I had to cut small bites and chew carefully. I still enjoyed every last morsel of food. Right down to the last bit of juice left on the plate.

Yes, it most certainly was a GREAT DAY!

The Thought of Death

2008-04-18T09:06:00.006-04:00

Recently I have had people ask me some difficult questions relating my Oral Cancer to death. At first I was offended. Then I was upset. Then I thought, they just do not get it! So, rather than getting upset, I am going to use this as an opportunity to educate! This is my take on the subject and how I personally feel.

Death! This has been a topic for discussion since man has been on the face of the earth. I think we all can imagine what dieing is like. But we all want to know the big secret that lies behind after death. Is there life after death? Because of this big unknown, there are those of us that are afraid of death. Are we going to a place like Heaven, a glorious place that God has promised us? The Bible says that He has prepared a room for us. We only await His calling. I have spoken to people who say they can not wait to go to Heaven. They not only embrace the idea, but long for it.

Then the question remains........are we good enough to go to Heaven? Or are we going to Hell. I am not going to take that topic any further. I will just say that it is the other side of the coin that enters ones mind. In my belief Hell is very real. So, ya better be good!

But what about those who do not have a faith? What about those who believe in a Superior Being but is not sure who or what that is? What about those who believe in evolution? What about those who have no belief one way or another? The fact and the validity of the questions asked still remains the same.

Does your cancer make you think about death?

Do you think you are going to die from the cancer?

How does that make you feel?

How does this affect your life?

Are you ready for some very honest answers? I hope so!

I have thought about death many times in my life. When I go to a funeral. When I have too much time to think. You know, those times that you have alone and you constantly think of all those weird and funny things that you would not otherwise be thinking of. And yes I have questioned the validity of all these things and why we even exist. And how can I validate my own existence.

But does having Cancer make me think of death? DAAA! You are darn right it does! Heck I thought of death before Cancer! What the heck would make you think I would not think of it now? FOR GOODNESS SAKE! Get a grip man.

Do I think I will die from the Cancer? I do not know. If I knew that.......I would be God. What are you going to die from? Can the cancer accelerate my death? Sure, but I can just as easily be hit by a drunk driver today as to die from cancer. NO ONE REALLY KNOWS!

How does it make me feel? Well, it kinda bums me out. But it also makes me understand and really appreciate the things in life that you all forget about. I look at the dew upon the grass in a different way. I see the ripples in the pond, I look at the smile of one who gazes at me, I embrace and hold true to all the gifts of the world that has been given to me. And THAT, makes me feel GREAT!

And the last question.........How does it affect your life? I think that it has made it much better than it ever was before.

So, here is what you all need to understand if you have not already figured it out.

Death is a part of life. We all know that. We all have our own beliefs and ideas on life after death. But cancer does not make me think of death as the forefront of my life! It is not the center of my attention. This is only part of the stigma attached to the word, "CANCER". This is the lack of understanding that you all think of and wonder about. If you all wondered every day what and why and how you were to die, you would be miserable. And more than likely die way before your time.

Yep, I have Chemo and Radiation to go through. The pain is there from the cancer. And yes it all SUCKS! But you know what, you more than likely think going to work every day sucks. Hearing your kids scream may suck. Getting a speeding ticket sucks. But this is what we call life. No one said life was easy. We all have things to deal with. It is what you make of life that matters.

Cancer is not a characteristic of my life or my family। It is just a part of it. I have been given a gift you have not. I can embrace and relish in every waking moment of what life has to offer and not take anything for granted. Anything from the guy who waves at me with only one of five fingers showing for going the speed limit to the wind rustling through the trees as the fish swim by creating the soft ripples in the pond.

WHODATHUNKIT?

Getting the Word out about Oral Cancer

2008-04-15T15:48:00.007-04:00

Well, I have a lot to report today. My first big exciting news is, that a small south side paper had contacted me today. It is called the South Side Times. They want to do a feature article on yours truly. PRETTY darn cool, is it not? They wish to do a feature on me. They called me and asked if I would be interested and I said, Of Course I would be. What an opportunity to get the word out about Oral Cancer. My interview in tomorrow at 3:00PM.

That brings me to my second bit of news. My sister has taken it upon herself to do a benefit dinner for me to help raise money for things like the uninsured medical bills and such. Since not working it has become a bit of a burden, but as always, I work through somehow the money just comes. ( Lord provides.) But she will be having a dinner this Friday a the Masonic Lodge between 4:30 and 7:30 PM to raise a bit of cash. I think this is very cool of her. Some times being my sister she is a bit of a pain in the rear. Always wanting to mother me and treat me like a big ol' baby. But beside that , she means well and has really gone all out and made this happen. Kinda cool too I think. Money is not the real issue it is more the thought behind it all. Guess it will be a spaghetti dinner with salad, French bread, chocolate cake and a drink all for $5.00. What a DEAL! This day and age a meal for $5.00, WOW! I guess the paper will be there also as part of the story.

I wanted the chance and now I am getting it. Come on Bob and Tom! or Heck, what about Regis or Oprah. Maybe a bit ambitious, but...why not? I will be amazed at that one I think.

Chemo went well this last Monday. I have gotten the Acne rash that was promised to me. Bringing back the old high school, teenage years. Only difference is you do not have to duck when I yarn. The pimples are not filled with that nasty stuff.. reminds me of water. But I bought some Oil-Free Acne Wash, a Foaming Cleanser by Neutrogena and it works well. I use it in place of soap twice a day and it helps dry it out. So there is my free plug for them. Now if Neutrogena Corporation wants to send me a dollar I would not turn it down. Or maybe some free bottles, oh... only 4.85 at your local Walmart. I do have some slight muscle soreness from the Erbitux, but that is not all the time so I can deal with that. I have a bit of rash, on the chest as well, but not bad, least not yet. The Erbitux is working though. It has reduced the tumors some. It has caused swelling in others. This is because the Her 1 pathway is blocked and the cancer cell can not grow so the agitates the cells around it hence causing some inflammation. This will go away after radiation starts.They are currently mapping out my treatment for the radiation. This will take about another week or so, then they will call me to start that. Then is 8 short weeks, I will be done. Ya, I make sound simple. I know I am in for a ride, but once you get on the roller coaster, you got to finish the ride to get off of it.

Finally, I toot of my own horn. I have officially been smoke free now for 3 weeks almost 4. I mean 100% smoke free and with no patch either. I was on some pain meds after the last surgery, that made it easier not to smoke. Plus I was in such horrid pain, that I did not care about smoking or anything else either. But now that I have not smoked even a puff of a stub since then, It gets tough. Not a day goes by that I want one. Even now as I think about it, I want one....BADLY. I just don't! Having a portion or your throat cut out and your teeth extracted and jaw line ground down is a good motivator as well. Would not suggest going through that though. Do as I say, not as I do. Do not smoke and get checked for oral cancer! Ya, I never though it would happen to me either!

Making a Difference

2008-04-12T09:13:00.006-04:00

During the last few months of posting entries into my blog, I have made a few friends. They all have cancer in one way or another. Some have Head and Neck like I do. Some have Breast Cancer and some have Lymphoma. Some have had Cancer since age 3 and are now having babies. Some have only had it for a year or less and have days when the struggle with what life with cancer has to offer. can trouble them. Then there are the days when the sun is out, it is a warm spring day, the smell of fresh cut grass is abounding. Life could not be any better!

These people have really been my best source of help to me. Yes, my family, friends and those who are close to me have really been there as well. I am not short changing anyone. But to really talk with someone who has been or is currently there.........it helps the healing process that much more. These are the people who are within the realm of total understanding. Everyone else can sympathize but to really understand, you have to be there. You had to have gone through it. It is these people whom I have grown to not only respect, but to appreciate as well. It is without their knowing, the correspondence has been most helpful.

It is this very reason that I feel so compelled to get this story out. I want to travel to every city in every state and tell my story. Inform people of how they can prevent oral cancer from occurring or how they can deal with it in a most positive way. Like any cancer, early detection is key! It is key to any possibility to a cure. It is key to a successful long term remission. Oh ya, all this can happen without early detection, but why not increase your chances if you can? Are you starting to see why I am getting so compelled? There is so much information that begs for an audience.

People say I should write a book. Never thought of myself as a writer. I just blog about what happens and how I may feel for that day. I guess it is becoming a lot more than that. Amazing I think. One day I am writing a note so the family out of town can see how I am doing, the next month I get emails from total strangers about how much of an inspiration I was to them. WHODATHUNKIT?

As I get the emails on a weekly basis now, I realize even more. that there are so many people who need to hear it from those in the trenches. Not only those with the cancer, but the caregivers as well. They want to know how they can best help the loved ones afflicted. I answer each of these carefully. It really depends on the personality of the person at that time. Heck, I can change like the wind without a moments notice. One minute I am Mr. Happy Go Lucky and the next, I am Mr. MAD AT THE WORLD! Do not mean to, but it happens. Though I will say, mostly, I control it and keep it to myself. OK, I try to!

So my goal is to make a difference. To share with others of the experiences which are vital. I would feel blessed to go to churches and share how cancer has sparked a new found faith. It would be an honor to speak to newly found Doctors at universities who need to know how they can best help their patients. What I would enjoy the most, it to help others understand what Oral Cancer is about, how they can detect it and how to deal with the cancer once it does occur. To be able to impact someones life in a positive manner. To give back what has been unselfishly, given to me!

Pre Radiation Treatment

2008-04-10T11:11:00.005-04:00

The mask is what holds the head and neck area in the same place every time Radiation is done. After mapping out on the computer for a week and a half, they need to insure that the work was not wasted. You must be in the exact same position every time. It would not be prudent to radiate the tongue one time and the spinal cord the next with the same beam. So as horrible as it looks, it is a needed part of the treatment. And it really is not that bad anyway.
The outer rim of the mask snaps down to the table and holds you in place. Yep, It is snug alright. Barely enough room to swallow. But it works. I can breathe and see, what else matters? Today I had a contrast done. This is a cat scan with iodine infused via IV so that is kinda lites up what they need to see. This way they can further map out what needs to be radiated and at what strengths. So as the meds work into the system you get pretty warm indeed. For some reason your posterior end seems to warm up fast and with intensity. Almost to the point of being on fire. ( maybe a tad bit imaginary, but you do get very warm in that area.)

Having the mask made was no biggie. It is a fine mesh plastic that is warmed up and placed on your head and formed to your face. In 4-5 minutes, you are done. The hard part is up to the techs that map out the treatment. If you do your part and hold still, they do their part and map out the beams and particles of beams properly, combine that with proper Chemo, and they should kill the cancer in 8 weeks. At least that is the idea of it all. Certainly what I hope for! Kinda not looking forward to all the side effects of radiation nor the current side affects of the chemo, but in 12 weeks or less, it will all be over, and I should be cancer free. Again, in theory. Then it is a mere wait for the next five years. Five years of testing to see if it come back. Five years of wondering. And as each year passes and I get a clean bill of health, it will be one more time I can laugh in the face of cancer. I can fly the flag of survivorship.

Kudos to the Doctors

2008-04-09T08:58:00.002-04:00

I have to tell you all. I would have rather not had the cancer. But since I do, I have to say, I have been very blessed by the Doctors that I have had. They all have gone above and beyond what it deemed normal patient care, in order to insure my best possible outcome. Because of that, I would like to give them each the credit due!

Dr. Tharp and Dr. Loesch of the Central Indiana Cancer Centers. They both are very knowledgeable in their field and have left no stone unturned. They have gone through all the pros and cons of treatment and have made me feel very comfortable with the treatment I have received. The staff at the center is also to be acknowledged. The treat you like family. They will get you a pillow, a blanket, a cup of coffee or a snack if you like. They do what ever is needed to insure you are comfortable.

Dr. Tom Quill DDS, this man has bent over backwards for me. Normally it takes 6 weeks to make a pair of dentures. He worked on days off and into the night to make them in one week so that when I come out of surgery I had teeth. As a Dentist, my daughter has a BAD case of the scaredycats. He made her very comfortable and she has had two fillings done by him and was ok with it all. She likes him very much.

Dr. Phillip Montefalco DDS-Oral Surgeon, Very professional and knows his job well! He also bent over backwards to make this all happen. With out his help, my surgery would not have been. I needed my teeth out, radiation would have killed them off and presented more issues down the road. I had lot of disease and gums receded and I was just a mess. Dr. Montefalco realized the seriousness of it all and simply made it all happen.

Each of these Doctors and their staff is really unsurpassed comparatively and deserve to be recognized as such. To all of you who have been so nice and professional to insure my best care, I say from the bottom of my heart, Thank You!

Sincerely,

John Resner

Coping with CANCER

2008-04-03T08:39:00.005-04:00

In the midst of cancer, one may suffer times of anxiety, depression and fear. You become anxious about the uncertainty of what is to come. You feel sorry for yourself. You may even suffer a bit of self pity. Then you certainly have the fear of death. The BIG C! This is where the stigma resides. Cancer.... disease that has no cure. Truth is, there are a lot of diseases and disorders that are not with in the means of a cure. Some bring death, some do not. I tell you of this for two reasons.

The first is a simple and short reason. Through the coarse of this blog, some have questioned why I do not seem to suffer from any of the above mentioned. Let me tell you, I do. On a "BAD DAY", I suffer with all of them and maybe some more not mentioned. I have been at the lowest of lows and have come to understand why DR. K has been employed to perform his services. Not that I condone these actions, but can understand the mindset of those afflicted. But here is the difference, I do not allow it to run my life. To allow such a thing would be allowing the cancer to control what is to be. I am in control and shall continue to be so. I tell it what I am going to allow! I say when the fight is over! Oh I may have plenty of battles, but I shall win the war! God has given each of us a wonderful gift. A gift we all to often take for granted. The gift of free will. It is this free will that allows us to control either in full or part what is to be. It is this will I utilize to control the final outcome.

The second is brought about by a recent life experience. My grandma of 95 years recently passed away. She had a great full life packed with kindness, adventure, good will and meaning. Though many will accuse me of being partial, she truly was the definition of what a perfect example of a human being should be. She lived her life by helping others. She never had a bad word to say about anyone. No matter how they may have been, she always had a kind word. The Justice Department could have modeled her disciplinary measures. Her actions which were always swift, fair and just. If you got in trouble by Grandma, she never told your parents. She did not believe in double jeopardy, nor did she try to open your case again after it was lost due to a lack of evidence. I think her secret was using the very definition of the word discipline. The root word is disciple which means to teach. She taught right from wrong rather than just to punish. I could go on for pages and pages about how much my grandma meant to me. I am sure that each of the children, grandchildren and great grandchildren, friends and other family members could do the same. She touch lives with no matter whom she came in contact with.

Here is the final point. Even through all the horrible things that occur with cancer, life continues. People pass on. Your children continue to need you. They continue to need your praise and share your life experiences. Your family members and friends continue to be a part of your life and want you to be a valid part of their life. There is a fantastic life going on all around you. It is ok to feel all the feelings you have. It is natural and is actually part of the healing process. But do not allow yourself to fall too far beneath the epidemy of your cancer to disallow what can be so wonderful and fantastic. As with anything else in life you must find your balance and use your free will to endure and embrace the challenges of life so that it does not pass you by.

Explanation of Oral Cancer Treatments

2008-03-28T07:47:00.006-04:00

There has been a lot of question as to what exactly the treatments will entail. Most of you want to know the specifics of the treatments involved. So I will tell you to the best of my own understanding.

First off the Chemotherapy drug being used is called Erbitux. This drug is used for not only head and neck cancers but for colorectal cancer as well. It blocks the HER 1 pathway which is the pathway in the nucleus of the cancer cell that allows it to reproduce. There is a receptor on the outside of the cell that sends a message t0 the inside of the nucleus to reproduce. Erbitux often misspelled as herbatux blocks that message hence the cell can not reproduce. This has come a long way from the old ways of fighting it with the DNA approach.

Along with erbitux they also give two premeds. Diphenhydramine ( benadryl) and Dexamethasone ( a Steroid). The Benadryl is given because in the midwest with a high pollen count they have has issues with mild to severe respiratory distress. This stops that from happening. The steroids help eleveate any anaphylactic reactions like hypersensitivity. Erbitux has proven very well in stopping the growth and reducing the tumor for sqamous cell carcinoma.

The common side effects of the erbitux are an acne-like rash, diarrhea and low levels of electrolytes (magnesium, calcium and potassium) have been reported. More commonly Magnesium. There is a host of other side effects but these are the most common. Ironically, it can cause hair to growth vs. hair loss. We shall see if it helps my male pattern baldness. ( THANKS to the gene I inherited! )

The drug has reported to have reduced squamous cells by one half or more by it self. VERY encouraging compared to others drugs used in the past. The treatment takes about 1.5 - 2 hours and is administered once a week through a port in my chest.

As you can see, the titanium port is embedded into my chest and a plastic catheter that travels up my neck and into the Jugular Vein. This way, there is less chance for infection and there is no popping of veins due to sticking you too often and a whole mess of other complications are removed as well.

The second treatment is radiation. It takes so many rads to kill a squamous cell. For squamous cell it is 6000 rads. It is one of the highest rads for any cancers. It is one of the hardest cancer cells to kill. Breast Cancer only requires 2400 rads to kill it. And the list can go on. First the make a mask, kind of a fish net material that is made for your head to hold it still and in the same position every time. It will take 1-1.5 weeks to map it all out on the computer. The mask insures the same positioning once the beams have been programed to each target area. The radiation is started off slowly, peaked and then brought back down again. The Peak is 6000 rads. This will cause basically a burn on the outside and inside. Looks like a a bad sunburn on the outside. This is why it can make it hard to swallow during radiation treatments. The radiation takes 8 weeks to complete.

I started the chemotherapy today. It will continue until the radiation treatments are complete. After that I will get another pet scan about 2 months later or so to see if all the cancer was killed off. Then I will have that done on an annual basis for 5 years.

Teeth Extraction for Radiation - Port placement

2008-03-28T07:44:00.000-04:00

Tuesday was my surgery. In itself, all went very well. The Oral Surgeon pulled my teeth on both top and bottom and had to smooth out the jaw bone. The port placement went well and that surgeon was also happy. Tis always nice for the surgeons in a good mood. I coughed up some stuff from the lungs. Out of habit, I was pounding my chest to assist the upward travel of the subtance and I hit the newly installed port. YES SIR ! In the words of Janice from the TV show Friends,....."OH.....MY.....GOD!" That was the dumbest thing I could have done. They heard me howl down the hall. Nurses came running in. Fortunately I caused no damage. Just a two day reminder not to do that again.

This was only the second surgery in my life. Last time they gave me Valium to take off the edge because I was so nervous prior to surgery. This time they offered Versed which I refused. Versed only makes you forget after the fact. I read up on that one before hand. You can still be frightened you just won't remember it. Last time they gave Morphine for pain. GREAT STUFF! They were giving me pills for pain this time. It is amazing how different various hospitals operate. ( No pun intended.)After 2.5 hours on the table and 2 hours in recovery, I decided to go home.

Stumbling out from my wheel chair because of the effects of the anesthesia, into the car for the ride home, I Later find that my face was very swollen. Matter of fact, it felt like someone had stuffed a basketball into my head and left it there. It was Saturday before it felt or looked any better. All the teeth are gone, your face is twice the size, and the dentures feels like a mouth full of china. I can not decide which was worse, having a tonsil removed or this. I think this one took me a bit more by surprise. Most everyone has had a tooth pulled. The next day you are feeling fine, eating normal in one week or less. NOT this time buddy! Is like pulling your teeth and then knocking your head with a baseball bat and leaving your sorry self for dead. Five days later, I still have echomosis on my face and neck. But I am better! The basketball has been replace with what feels like gauze packings around upper and lower jaw lines and under the eyes and in the neck. I should be good in a couple more weeks. Until then, ice bags and darvocet are my best friends.

The Port is doing ok. Because I am so skinny, you can see it and the tube going through my chest, up the neck and finally disapearing into the vein. It still kind of hurts too. Not sure if that is because of hitting the thing or because there is no fat for it to cushion itslef with. Either case, I do not like it! It gets removed in about 10 weeks or so. I can not wait!

The Next Step

2008-03-14T11:10:00.008-04:00

Medically speaking my next step is going to be on Tuesday, 3-18-2008. It is this day that I will have surgery to have all my teeth extracted and a port placement. Ahhh, Why you ask? I shall briefly explain.

Radiation can cause your teeth to go bad. If that happens, it can cause a multitude of problems. Infection and death of the jaw bone being the biggest concern. Should this happen, surgery is required and this in turn can cause a difference in life quality. That is summing up a lengthy explanation, But I try not to bore anyone. In a nutshell, I am preventing a host of potential problems. Hence increasing my percentage of survival.

The port, it is just so they can inject my body full of those lovely fluids that not only help cure the cancer, but also create the side effects which we all have grown to accept yet hate simultaneously. Though the drug they intend to use, Herbatux, is not supposed to produce all those effects, the proof is in the puddin. Either way, the pain which I have endured for 2 months now has allowed me to gratefully accept what ever is to come in the upcoming months. ( Go figure!)

When I first started this blog it's intention was to keep my family and friends informed on my condition, cut down on the phone bill and save me from embarrassment should I be having a " Bad Day". What I did not anticipate was how many other people would be reading this blog and how it impacted their life as well.

After reflecting back on all the comments I have received, it has grown to be so much more than that. I have received many emails where people have expressed their concerns, similarities and let us not forget the endless supply and appreciated, well-wishers.

The well-wishers play a vital role. They are the people who do not, nor pretend to understand, yet their heart goes out to you. They are not sure what they can do, yet still offer assistance should you decide you need it. It is this that constitutes the feeling that they do care. Believe me, it is nice to be reassured of what we already know.

Our Com Padres of cancer, are the ones that are the most meaningful. Not to down play the importance of others, they are the ones to whom we can relate and find true solice and comfort in. It is these people who play the ever important role in our healing process. Whether you have or survived oral cancer, prostrate cancer, lung cancer or breast cancer, it has the same emotional toll. There have been five major Com Padres that have helped me along the way. One being my Uncle Dave. He is the one who was able to teach me how to come to grips with my cancer. The Second was my Mom. Her recent bout with breast cancer has allowed the both of us to rely on one another as a sounding board. The third was a friend named Jeanne, brilliant author of The Assertive Patient . She runs a blog as well and has emailed me frequently and really has helped more than she realizes. The forth is Dr. Creighan and all the friends at OCF. It was his e-mail that showed me the importance of my experiences and my desire to help others.

It is these reasons that I have developed the strong desire to take this blog a step further. It is my goal to be able to travel and share my experiences. Whether to a University, Church or a support group, I want to be able to aid those who are in need. To be able to urge others, that in many cases, a simple screening can either prevent or cure a cancer before it becomes too advanced.

OH, Number Five? Naw, ....I did not forget. I saved the best for last.
Number 5 would be the Good Lord above. With out his strength and guidence I would not be able to survive as well as I have thus far!

Deciding on your Treament Plan

2008-03-12T09:29:00.006-04:00

You must realize that you do have a decision. There is more than one way that you can treat oral cancer. In some cases, the choices may not all be there. I am sure that in extreme cases there may be only one choice. It is up to each individual to explore any options and make an educated decision. One thing I have learned, is each Doctor is bias towards his or her own field. I talked to four different ENTs and 4 different Oncologists. They all sided with their respective field as to what the proper treatment should be.

You must interview each doctor closely. Each time I met with a new Doctor, my minimum time was 1 hour. A lot of them lasted up to two hours. I dissected everything the told me and asked all kinds of questions. What I did not think of, the person who was with me did. It is this kind of information you need to acquire not only to make a rational decision, it is also needed to make a decision you can be comfortable with.

In my case, I chose to opt for Chemotherapy and Radiation treatment without surgery. The reason for this was based on two simple reasons. The first was, both surgeons and oncologist agree that radiation and chemo could take care of the cancer. The conflict was their percentages on success. The second was the quality of life. Both did agree and this would be affected by surgery. The difference here was how they viewed that quality.

My Aunt commented this in an earlier post, "Isn't it amazing in this day and age, how much is still left to each individual to determine what is the best course of treatment." She concludes her comments by saying, " ..........is the patent's responsibility to be sure all is done in his or her own best interest."

I could not have said it better myself!

I have read of a new early screening test which is cool. No needles, no brush till you bleed or anything of the sort. 100% non invasive. Is it called Vizilite.

The ViziLite Plus exam can help your dentist or hygienist identify abnormal tissue, that might develop into oral cancer. An annual ViziLite Plus exam, in combination with a regular visual examination, provides a comprehensive oral screening procedure for patients at increased risk for oral cancer.

The ViziLite Plus exam is painless and fast, and could help save your life. ViziLite Plus is performed immediately following a regular visual examination
First, you will be instructed to rinse with a cleansing solution
Next, the overhead lighting will be dimmed.
Then, your dental professional will examine your mouth using ViziLite Plus, a specially designed light technology.

They just need to provide more documentation to be approved by the ADA. Makes me wonder why they have not do so after a year has gone by. ?????

Find Your Health and Happiness despite Cancer

2008-03-06T11:52:00.013-05:00

Are you NUTS? Though I have been accused of that before, the answer is a simple no. Being brought up in the church as a child my Mom used to say, everything has a reason for happening. Even if we can not see the good, the Lord has a plan which we just can not understand as yet. When I was 15 years old I had the dumbest parents on the face of the earth. They knew nothing about what I was going through nor could they have any realization of how any of their life lessons could help me in my life's processes. And now that I am 47 years old, my opinion of my parents is a tad bit different. They are simply Geniuses.

Now that I have oral cancer and I can talk freely about it, I understand what they meant about seeing the good within what appears to be bad. Times during a cancer diagnosis can be termed as hellish. But they can also bring about more good than bad. It was during these times I was able to reflect on what most of us all take for granted. Yes, that phrase sounds like something my dumb parents of yesteryear would have said. But words could never be closer to the truth!

You realize the closeness of family, who your friends are and you certainly appreciate what life has to offer as a whole. If asked, "Are you healthy?", during a time when you have the flu, most responses are, "Yes, except feeling bad from the flu." When asked the same question after a cancer diagnosis, I say, "Yes, except for feeling bad because of the cancer. Many are shocked with that. I had one say...but..are you ok? ( What they are asking you is, are you going to die?)
I say, Sure, I am fine. (I am telling them, No need to give up on me for I have not given up on myself!)

Bottom line is, you will go when the Good Lord calls you. Period, End of Story!
When I climbed out of that poor, poor me stage and looked at all that I had, I never felt better nor happier than I did at that moment. I Find myself very happy and healthy dispite any cancer or other health issues that might arise.

Proud member of Jeanne Sather's Cancer Bloggers Join Forces.

Please read other bloggers on our health and happiness.

Health and Happiness
Happy Days
Health and Happiness by Jill
The Jar of Rocks
Can you have cancer and be happy? You betcha!
This one's for Jeanne.
Health and Happiness by Gudrun
Head and Neck Cancer Blog

Oncologist Revals Another Side to Oral Cancer Treatment

2008-03-06T09:55:00.004-05:00

I had not talked to the radiation or chemotherapy Doctor when I had decided to do the robotic surgery as previously described in my earlier posts. I only had the information the original ENT Surgeon had given me. That information was not complete nor totally correct.

He told me that I did have a choice of either radiation and chemotherapy at high doses, or, if that did not work, then I would need surgery and then more radiation and chemotherapy at much lower doses. Incorrect statement. He also told me that If I elected to do the Radiation and Chemotherapy first, the chances were about 50-50 of needing surgery afterwards. Also not correct. The quality of life was not explained well after surgery either. Fact is, it poor. Why? Because of the resection of the back of the tongue. In my case the lesion is on the left side at the base of the tongue. Way back where you can not see. On the lower end of the downward side, close to the voice box. They would re sect that and surrounding tissue for the margin. Margin meaning, removing extra tissue around the cancer spot to insure all of it had been removed.

What the tongue does and how important all that surrounding tissue is to things we all take for granted, is crucial. There are 6 cranial nerves and 25 facial and oral muscles that work together to able you to swallow. Opening your jaws also has many oral muscles and tissue to consider for it to open and close. More goes into it that you realize. It is very complex and intense. ( Surprising Huh?) Even having my tonsil removed and that surrounding tissue removed, has affected the way I open my jaw (it will not open 100 % all the way) and caused what is called nasal regurgitation. ( Sometimes when I swallow, a little bit tries to go up through my nose or nasal area. As that tissue heals, I may regain what has been lost, but I will have to see. But when resecting the back part of the tongue, it will not grow back. They would have to reconstruct that with skin from my wrist, shoulder or where ever. Yes the graft would take, but....would not be able to fully replace what God gave me. Hence, it is a life of soft foods, sauces and gravies. That is the case no matter which kind of surgery I would have. ( The original free flap or the TORS.) The robotic or TORS was just less invasive to accomplish the same thing.

Why I did not talk to the Cancer Docs right away? Well....I took the ENT's word for it all. After all, he IS the professional! Big mistake. Now, I talked finally to the Cancer Doctors and here is what they said. The Radiation Doctor said, that it takes a 7.5 week treatment plan of radiation mixed with Chemotherapy. The Chemo Doctor said they use a newer drug for the squamous cell now. It is called Herbatux. It does not cause nausea or vomiting nor hair loss. It has a lot less side affects and it actually blocks the pathways that the cancer cell uses to grow. It alone can reduce cancer tumors by half or more.

So, the radiation takes about 6000 rads to kill the cancer cell. If I have surgery first, it will take 7-8000 rads to kill the same microscopic cell. I forget the exact reason why, but it did all make sense. After this is all done, I will have the same quality of life. Of the 50 patients he has treated in the last year, only 3-5 of them needed surgery afterwards and for different reasons. That is a low percentage compared to 50-50. The Radiation will be every day, five days a week for about 7 weeks. Chemo...not sure how often, but that will be started next week even before the radiation starts. The worst I will feel is how I felt after my tonsil surgery. I can handle that. He uses very localized beams to do this. The one saliva gland will not be affected, and the other will, but he will use a lower dose beam on that one and give me a drug to stimulate it to produce saliva. He said that it is a 50-50- shot of being normal again. BUT it can and has fully recovered with other patients. ( That used to be another risk. Dry mouth.) I can also get me a plate to wear at night to assist the one good saliva gland to keep from getting dry mouth as well.

Patients have been treated both ways. Surgery first then radiation and then radiation first with no surgery. No matter which way you go, the end result is the same in his experience. One way is not better than the other except for two things. One quality of life is better with no surgery. IF and I say IF surgery is needed afterwards for some reason, then surgery is a bit harder because of the radiation treatments received. ( bleeding is worse and extra.) One thing I can do to reduce the need for surgery afterwards is to have my teeth removed before radiation starts. IF my teeth need pulled after radiation, I stand the chance of the bone dieing, therefore needing a bone resection and that is hard both on the surgeon and me. So I eliminate that risk factor by having all my teeth removed first.

I asked him why the ENT did not tell me all this. He knows this Doctor and he is the best when it comes to Microvasular Free Flap surgery. But, he does not know all of the fact with all of the patients. He only knows what oncology sends him. He also, is of coarse, bias towards his field, as is anyone. I added the comment, "And wants his dollar too." Well, I got a big giggle from the radiation Doctor from that comment. He then said in a jovial way, well....I am getting your money no matter how you go, so that is not a concern. He said my job is to inform you as best I can so you can make an educated decision. I asked him, if you were me....he spoke right up and said, I would decline the surgery! Both radiation and chemo has come a long way in the past 5 years. He said, now 5-10 years ago, I would have had a different answer. Bias towards his field? Perhaps, but I have wieghed my options, which is what we all must do.

So I start Chemo next week and see an oral surgeon today!

Who I turned to and What I fear

2008-03-01T20:25:00.006-05:00

Who do you turn to after being diagnosed and what do you fear the most? Perhaps better questions are, what all do you fear and who is there to turn to? This is a biggie, is it not? Well, in my case the answer is surprisingly simple. I feared everything and had no idea as to whom to turn to at all! After you come to terms with the awful facts of your cancer, it all sinks in, you really do not know the answer to much of anything. But I can share what I found out. The answers surprised me, matter of fact I was astounded! The really cool thing is, you do not really have to search for them, they will reveal themselves to you when you are ready to do so.

The hardest thing for me was telling my family and those close to me. Oral Cancer only has a 50 % survival rate within the first five years of diagnosis. Not to good, is it? Totally and completely Freaked me out! But you muster up what you must, tell your family and friends what is going on and what the latest news is. It is said that you find out who your true friends are when the chips are down. Little did I know just how many I had. My family was all supportive of coarse which was to be expected. What I never considered is how much it affected them. They stood by my wishes and allowed me the time to digest.

This is when I found just how lucky I was to have the children I do. Raising children can at times be a thankless job. Little do you know just how much they listen. They of coarse were devastated with the news, yet wanted to stay strong for the old man. I could see that it bothered them a lot. Yet they did their best not to let on to that fact. They would do anything to make it all better and just go away. I find myself being strong for them, attempting teach them one more lesson, the lesson of overcoming life's hardships with grace and dignity.

The one person who I have been with for the past 5 years, I am not sure she knew what to say or do. Though being through similar circumstance 13 years ago, it was not until about 2 weeks later, she said one thing that really meant a lot to me. "I wish you did not have to go through any of this." She told me of how she felt when the Doctors gave her a very unfavorable prognosis. She has been very supportive and does whatever she can. Little did she know, it was her story that was laying the ground work for my soon to be recovery.

My co-workers were and are Awesome. Each of them sincerely ask how I am and how treatments are going. The management has been so understanding and unbelievably condoning with my work schedule. They were at one point what one would come to expect. They soon shined above and beyond that. It was more than just a co-worker who had been afflicted with a disease, it was as if it were a member of family. I am very thankful for all they have done.

After feeling like there was no end to this horror, being afraid of what may come, feeling alone and in complete despair, there was that one conversation that made it all come together. It was not the preacher, not the many Doctors I have talked to nor many of friends. It was one family member who had been through a different yet devastating cancer 18 years ago. It was 18 years ago he was told he had only 6 months to live at best. He made the decision then, that he was not going to allow this to beat him. After sharing things with me that he has never shared with anyone before, he taught me that the Docs do about 10 percent of the work. The other 90 percent is in our mind. You can either will yourself to die, or will yourself to LIVE! He was no doubt, living proof of just that. It was now I realized and reflected back on what ground work had been laid previously and was inspired to do the same.

Around the world people have prayed for me and thought of me. Individuals, Churches, Prayer Teams of those I know not. I appreciated this to no end. I can not express those who have shown kindness, had me and my family in their thoughts and truly expressed their generosity. In every situation there is one or two things or persons who finally, is able to show you a reality that seems plausible. Offering a ray of hope out of a tunnel of despair. It was these people that put me on the track to true recovery.

So who do you turn to? Where is the support system you yearn for? Look around you. They are all right there. They are just waiting for you to be willing to accept their help. It is the realization of the support I have in my entire family, my co-workers and friends from around the world, I have no doubt I shall fully recover and become a survivor of oral cancer rather a victim of despair.

Pandoscopy Proceedure

2008-03-01T07:07:00.009-05:00

How ever you spell it Pan endoscopy or Pandoscopy, this is another procedure which is a fact finding mission.
Pan endoscopy (including laryngoscopy, esophagoscopy, and possible bronchoscopy): The Doctor will thoroughly examine the larynx, hypo pharynx, esophagus, and the trachea and bronchi (breathing tubes of the lungs). This examination, called a pan endoscopy, it is done in the operating room while you are under general anesthesia (asleep). The surgeon will look at the area through a scope to determine the size of the tumor and how much it has spread to surrounding areas. A biopsy (removal of a tissue sample for examination under a microscope) is performed with a special instrument operated through the scope. Fiber optic scopes are also used to check the esophagus and, possibly, the trachea and bronchi.

This is a more costly procedure but is more in depth in the determination of the size of the cancer. It also will determine my candidacy for the TORS. Most insurances will not pay for it because of the less expensive procedure that they say is good enough. Can you imagine that?
I have a problem with this. Who are the insurance companies to say what is good enough for our health! This proves that our best interest nor our health is an issue. It is all about how we can save a buck rather than increase the chance for survival. But that is a whole other article!

My current condition is less than I would have thought two weeks ago. My throat is very sore. This is in part from the tonsil and surrounding tissue being removed. The scab has fallen off and now the new tissue is sore. The one Lymph Node is very swollen and I know I need treatment as soon as possible.

I am optimistic yet remain concerned. I know that getting this done right away is imperative yet the free flap surgery concerns me a tad bit more. Dr. O' Malley and his team are very good at what they do. I still wonder if there is yet another form of treatment.

My next appointment will be this next week March 4, 2008 with the oncologist. We are to discuss what I can expect concerning a possible treatment plan and how that will affect me.

Pre-Op Proceedures & Tests

2008-02-19T22:07:00.011-05:00

One thing we all want is to put our trust in our those who treat us. And most of us do. There are occasions when a professional tells us something, it may make us feel uncomfortable. Questions pop up in your mind.

Have they done all the could have?
Are there other options other than what was discussed?
What is the likeliness of the side affects?
Are they after my money or is MY health and best interest their number one priority?

Doctor O'Malley and Doctor Weinstein of the Department of Otorhinolaryngology: Head and Neck Surgery at the University of Pennsylvania, are very through. How refreshing is that? I admit, getting all the information needed and getting all the tests arranged before my first appointment with them has been a lot of work. It is very comforting knowing they truly do have MY Health and Best Interest as their number one priority!

They have ordered a few tests before I make my trip over to Philly. If you are lucky enough to be considered a candidate here are some tests you may have to undergo. Each person may vary depending upon your medical history.

H and P
Blood work such as PT, PTT and Chem 7.
EKG, Chest X-Ray and CT Scan along with an MRI.
Normal first time paperwork listing allergies, family history ect.

H&P is your History and Physical... like that coversheet you fill out at the doctor's office every year. Asking you thousands of questions... I call them the "ever had" questions. PT and PTT is a "timed" bleeding test. It measures how quick your blood clots etc. etc. People taking blood thinners have to be very careful before a surgery... this is routine for surgery patients along with the Chem 7.

The liver functions probably is in conjunction with the PTT since the liver filter's your blood, they want to make sure everything is working properly. And my best guess about the Thyroid is they don't want any surprises when they get in there, like a goiter (benign tumor) growing on your thyroid. Since I am so slim and having such a high metabolism rate, I assume they probably suspect hyperthyroidism, but nothing to worry about there. Leave no stone unturned.

Even taking something as mild as aspirin or ibuprofen can affect the clotting of blood during surgery. Some vitimans and herbal product will counter act with other meds given during surgery as well, the way I understand it. Rule of thumb is do not take these things two weeks before hand Unless your Doctor approves of it. When in doubt.....ASK!

I will have to see a Doctor of Internal Medicine to get these tests done for pre-op clearance. MAKE SURE the Interest is willing to do so if you are in another state. I almost did not get one to help me with this because of that very reason.Save all your documents and records. You will need to bring them with you. If you do not have them, ask for them.Last thing I need to do is get a Gastrostomy Tube. Different types are available, You should research it and see what is best for you and make sure the Doctor can put in what you request. Some Gastro Doctors only put in certain types.

Why do you need it? So you do not starve! During some surgeries IE: Grafts of the tongue or during radiation, you may not be able to swallow on a lot of days since this is involving the mouth and throat. The G-Tube allows you to eat. Some patients refused this and lost over 100 pounds or more and became very ill from this. Do not be stubborn or a hero, you will wish you did get it done when you can not eat anything for days or weeks.

Alternative Treatment Plan For my Oral Cancer

2008-02-17T15:32:00.006-05:00

After receiving the news of the type of surgery I was going to have to recieve, I decided to do my own research. I was looking for anything that would cure or perhaps offer a safe yet alternative treatment plan for my oral cancer. What would it be or where would it be? I had no idea but was determined to find out.

After searching the internet and looking at articles that people would give me, I found a different plan of action. It was found at the University of Pennsylvania. That is right, good ol' Philly. It was here that I found out about the Transoral Robotic Surgery.

Also known as TORS, this offers the same outcome of the microvascular free flap without all the trama and longer hospital stay I was briefed on originally.

Reduced pain and trauma to the body
Less blood loss and need for transfusions
Less post-operative pain and discomfort
Less risk of infection
Short hospital stay
Faster recovery and return to normal daily activities
Less scarring and improved cosmesis
No Scar and no tracheotomy, all done within the mouth by robotics and little cameras

So I called the Department of Otorhinolaryngology: Head and Neck Surgery on my own. I got my file from my surrent ENT and faxed it to them. I talked to a nurse who talked to Dr. Bert O'Malley who reviewed my file and said I may be a good candidate for the new procedure. I am to have some tests done here and I am going up on March 10,2008 for an MRI and consult. I will have a minor surgery on March 11, 2008 so they can size the cancer and see if I meet the criteria for the Robotic Surgery. One disqualifier is that you can not have had any radiation or Chemotherapy treatments. Thank God I have not have had any of that as yet.

I never thought I would say this, but I am really excited about this surgery. I hope and pray that this is the answer to prayer. If I had to have a procedure done, this is the way I would prefer. I shall keep you all posted on the results of those findings.

I have also read about a natural product called Avé. A dietary supplement containing Avemar, a uniquely beneficial natural compound that has been the subject of more than 20 peer-reviewed publications describing in vitro, in vivo and human clinical trials, with such dramatic results, its hard to believe that it is all natural.

Once daily use is shown to support healthy immune system modulation and the regulation of cell metabolism, supporting the processes of cell differentiation and repair. It has not been apporved by the FDA because it is all natural and therefore can not be patened. However private studies show that it does reduce the Squamous Cell Carsonoma by up to 85 percent. It also is said to reduce the side affects of Chemo dramatically.

I not started taking this as yet, I do not want to hurt my chances with the TORS, plus it is 161.00 for a 30 day supply. I am investagating this more, so I will keep you posted as to what I may find and how it may or may not work in conjuction with regular treatments.

Green tea stops growth of oral cancer cells and breaks down and kills existing oral cancer. The polyphenols in tea areantioxidants, which work to remove free radicals (oxidants) which cause the mutation of genes which lead to cancerous growth. By drinking 4 to 6 cups of green tea a day the polyphenols can inhibit the growth and spread of cancerous cells. The results of research at the Medical College of Georgia in Augusta, USA indicated compounds in green tea selectively induced cell death only in oral cancer cells while ignoring normal cells.In China where green tea is extremely popular, oral cancer rates are 1/2 that of North America, even though smoking rates- a known risk factor for oral cancer - are 3 times higher in China

Reported by www.100percenttea.blogspot.com

Teatment Options for Oral Cancer

2008-02-17T13:43:00.004-05:00

It was 6:00 AM when I crawled from the tent to make my first mornings coffee. I was excited today because we were going to take the 4x4 up one of the hardest mud bogging hills there was in the country. Very few made it up this hill and I knew with the new modifications made to my truck by McFarlands Off Road, I was going to be King, as I had proved to be so far this week.

That is the story I wish I could tell. Here is the Real story about my 4x4 Experience!

I was referred to another ENT who reviewed my file. He did his little examination and started to tell me of my options. OPTIONS!........ I like options. That means that I have choices. Must not be too bad, otherwise I would not have "OPTIONS". In the words of the infamous Bill Engvall, "That would have been a big ol' WRONGOH! Things could not have been further from the truth."

I sat in this chair that was fastened tight to the floor. It was very small, sat very upright and would not recline. He proceeded to tell me of my "options". Here they are.

1.) I can go through massive doses of radiation and chemotherapy for about 8 weeks. He described it as being very brutal. At first you won't feel too bad but by the second week, maybe the third week if I was lucky, I would not want to do anything or go anywhere. I would be very sick and feel like total crud! The treatments would be every day, 5 days a week for 8 weeks.

IF going through all of that did not work I would have to have surgery anyway. And then more radiation for a short time.

2.) The second option would be surgery. After surgery I would still require radiation and chemo , but milder doses and for only 6 weeks vs. 8 weeks.

Here is where that proverbial 4x4 came and smacked me right on the side of my head and knocked me cold! He described the surgery which I considered to be nothing less than barbaric!

The incision would start where the upper and lower jaw meet. Then it would kind of horseshoe down and go to the chin. Then they would cut the jaw bone in two. The red line in the picture to the left, indicates the flap that would be cut and the blue line is where the jaw would be cut. The reason for this is, they can not see down the mouth to do the surgery. Your tongue goes back and then down. It stops just above your adams apple. Yeah, I did not know that either. So in order to cut out the cancer they have to make these incisions, Swing the jaw out of the way in order to see to do the surgery. Then they would take some skin from my forearm and some vessels to make the graft for the tongue. The vessels would keep the graft from dieing out.

This would be a 6 hour surgery and then after all was done, they would sew me up like Frankenstein and insert a tracheotomy. Why? Because of the swelling that will occur after surgery. The swelling can get so bad that it would cut off my air and I would die. This also allows me to cough up the crud from my lungs that develops during long surgeries without messing up the graft on the tongue.

It was at this point I came to a full realization that I had Cancer!
I sat in that chair after hearing all he had to say. I was partly sick from the surgery description and partly stunned from the big 10 foot long 4x4 he just hit me in the head with. I sat there and was............well, I just was. I had no feeling, my mind was a blank for a minute. I could not speak , I did not move. I just sat there. And then......emotion took over. It was all I could do to muster up the "Manly Courage", to keep from crying my eyes out! I now realized I had cancer and more importantly , what that meant!

The Doctor says.....you all ready for this one? He says.....Are you ok Mr. Resner? Oh MY GOD. Can you imagine what my thoughts were at that time. My thoughts only took about 5 seconds and within that 5 seconds those thoughts were...... You just took my gonads and ripped them from my scrotum and stomped on them just after ripping out my heart and soul.... and you want to know if I am ok. My reply to him was simple, I answered in a weepy yet slightly muffled voice, NO!

He excused himself and a nurse came in to discuss things more. Well, there was no discussion, she had the consent papers to sign. That was her mission, to get me to sign the line. She did not have answers to my 10,000 questions. She did not know much of anything at all. Kind of a dumb cluck actually. But she knew how to shove those papers in my face!

So I took the papers and told them that I need a few days to digest all of this and I would call them back to let them know what I had decided.

First Tonsil Cancer Surgery

2008-02-17T13:39:00.002-05:00

All I could think of was Ohhhh, S@#T! Now I realize that this is not the Christian thing to think. Nor is it proper to put into print. What you need to understand is the frame of mind. It is different and anxiety can bring out a lot of things that normally would not be indicative of your normal thinking. That is exactly what I thought though. As I was removing my clothing in preparation, I dern near chickened out! But...I " Manned Up" and donned the gown of shame and embarrassment. The nurse seem to read the situation well. She asked if I needed something to calm my nerves. My reply was short, quick and to the point. YES!! Thank God for valium. It makes you feel very mellow! Pretty euphoric I must say. You just do not care about much. So I went into surgery for my first time. I remember thinking that the lights were BIG, the table was small and the tools on the other side of the room looked scary! So I closed my eyes and they stayed that way. The less I know and see the better it is for me.

I used to be an EMT. I would do CPR on people whom were lying there dead. I would scrape people off the street who were badly hurt and in need of surgery or they would breathe thier last breath right under my nose. Something we would term as " The last Sigh". But that was them. This was me this time. Tis a different story now. Percentages are no longer an issue. When It is you, it is no longer 70-30. It is 100%!!!! Starting to understand the frame of mind yet?

I was deeply scared. But even this I found, would be nothing to what I was about to experience in the very near future. All in all, the surgery went fine. I woke up what seemed to be a few minutes later and had a mouth that felt like the Mohave Desert. I was denied drink but finally offered ice chips which can seem like a real treat. I later found that they removed one tonsil and the biopsy revealed cancer. Recovery was a BEAR! They removed the tonsil and what is called a reasonable margin. Means what ever they feel is necessary to try to get all the cancer in that area. Recovery was long and hard. They older you are the harder it is to get over a cold much less the pain from a tonsillectomy. But after the third week I was better.

I had Squamous Cell Carcinoma. A common cancer for the oral region. It was in my tonsil and in a portion of my tounge. I was now being referred to another ENT who specializes in Oral Cancer. I thought ok, Surgery it is not that bad. I have after all, one under my belt now. Little did I know what was entailed in this surgery. The options to surgery seemed bleak!