Joe: Tongue cancer survivor

Listen With 10 minutes, 35 seconds.

Username: jschirmer

Hi. My name is Joe. I'm a survivor of tongue cancer. I was diagnosed in 1995. I had no symptoms. I basically went to the doctor for another problem. I thought I was having sinus problems. I had a little lump on my throat. At that time I was in Florida, which I am now. I didn't have a doctor so I went to the phone book and picked out a doctor. Thank God that this doctor saw my type of disease before and told me that he didn't think my problem was sinus that he thought it was something more serious than that. That he'd give me antibiotics for one week and come back and see him, which I did. From that point, I went to an ENT who diagnosed me with squamous cell carcinoma. He also sent me to a MRI the very same day. It was kind of odd because I got diagnosed on my mother's birthday, which is the same disease she died with, the same disease I have, which is kind of a brings it back in your face account.

From then on we went to--I was forwarded to Sylvester Cancer Clinic down in Miami, Florida. I was told that the doctors down there were capable of doing the surgery. I was referred down there. It took me a month to get an okay by my insurance company, which as all of you know, that's the first problem you run into, is your insurance company. From there I ran through tests to see if I could survive the surgery, they read my MRI's and told me what my cancer was. At that time, my chances of survival were surgery, radiation and chemotherapy. On May 28, 1997, I had my surgery, which was 18 and a half hours of surgery. That's taking the cancer out plus the reconstruction on my tongue and throat and palate. They did skin grafts off my wrists and arm. Six weeks later after I had recovered from the surgery, I started my chemotherapy and my radiation. And the first two weeks were fairly normal. After the first two weeks I was extremely sore. Radiation got my throat very sore, plus the chemotherapy started. The first time I took chemo I was fine, the second time and third time I took chemo I was hospitalized for an extended period of time.

Dealing with the financial issues

One thing that some people can relate to are the insurance people came to see me in ICU the first day I had surgery, which I had no idea who they were because I was out of it. The second time they came to see me was when I was getting chemotherapy and radiation because they were upset because I was out of the network. And my wife said, it wasn't funny at the time, but she said it was very accurate--she said the woman was complaining why I was out of network, why I wasn't going in Deerfield, and I guess I vomited all over her. She kind of left the room and left me alone after that. As all of you know the biggest problem you have is insurance. But I feel fortunate that I was under some very good doctors and was fortunate enough to recover. I was out of work for four months. I'm a purchasing agent, so I went back to work after four months. As of now, I've worked every day, ten hours a day.

What got me through this I believe is God spared me, gave me the right direction to go into, and my family. Without my family's support, I would never have made it through this ordeal. To give me the will to live and as all of you can contest to, that you know it's always good to have family around, or at least a friend.

Be proactive and stay positive

One thing I would like to do is tell everybody keep a positive attitude, because a positive attitude is one of the biggest things that keeps you going. The best thing that you can do to support other people with this disease is go see them, talk to them, and encourage them. Let them know there's some type of normal life after treatment and after surgery. You know, just tell them to stay positive, it all works out in the end. One thing I'd like to mention is most of us have financial problems after we have this disease. I would love to see legislation through our government, not through grants but just to help with loan, kind of like a student loan, to help pay back some of our bills that overwhelms you, that insurance doesn't cover. I'm not saying that we want anything free; we just would like several breaks, because if a lot of you are like me, I had to live off credit cards when I was off sick in order to survive. I think it would help everybody if we could form legislation to help other people that's in this same situation to get some financial help, not necessarily a free ride, just some lower interest loans that would help everybody.

And I think that through advances from us people that have come before, they have come a long ways. I think this is the hardest way but I met some of the best friends in the world coming from this disease. Everybody I've talked to that has cancer is so tuned in to our illness, everybody's affected by it, that people try to understand your problem and understand your speaking disability or understand other disabilities that you have. I just think there's a wonderful bunch of people out here that support all of us. I don't know, I know the caregivers are people that really go through the trials and tribulations. First it's us patients, they see us at our worst. They have a lot worse problems dealing with it mentally sometimes than we do, because they want to help us and don't know how to help us. I think the biggest thing that we can do is help other patients.

What I try and do is help anybody I can that has any type of disease, not just our cancer, any type of disease that they need help with. I'd like special thanks to all the doctors and hospitals that took care of me over this length of time. I'm just a few months from reaching my five-year age of survival, which is very good. As most of you know, head and neck patients have a tough time speaking afterward and eating. I eat a little different than normal people. I can eat through a feeding tube, but hey, I'm alive. I'm well. I'm able to work, support my family. So I think that's a very important attitude to have, think positive, and somehow it all works out.

Treasure friends and family

You know, one of the positive things I would say I gained out of getting this disease is that it gives you a real understanding of what life is about and that you should take time to talk to your family and talk to your kids and grandkids, and to look back at your life and you know, how can I help other people? Because it all comes down to it, it's the little people that help the other people. And one positive thing I can say that come out of this, I have some really true friends that have stuck by me and have been able to support me through this whole thing. The biggest thing I would say positive out of the whole deal is the friendships we make, just by having other cancer patients and other people that you talk to that understand your disease.

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