Wednesday, May 21, 2008

Johnny's Ride

Ride Against Oral Cancer


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.

Surprisingly staggering is it not? This is according to the last stats which have been gathered. Since this time there is a new drug being used in Chemotherapy called Erbitrux which is a tremendous breakthrough. And the Radiation Oncologists are fine tuning their techniques as well. But until the new data is in the stats are what we have. I do not expect the mortality rates to change that much, but any would be great.

The treatments are what really get to you though. Not just the discomfort caused from radiation but the costs as well. To date I have emptied my savings on bills that insurance would not cover. I currently have about 7000.00 that I have had to pay for and I still have a pet scan every year that will cost about $2500.00 per. With a 3000.00 deductable that is a lot of out of pocket money. Not to mention that the cobra is sneaking up on me quickly.

So, my best advocate, my sister, decided to hold a bike ride to help offset those costs. And hopefully we can raise awareness at the same time. Click Here to learn more about the ride.

Tuesday, May 13, 2008

First week of radiation done

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

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.