Hi All,

My name is Jim and I am Cancer free. However, at the time of my treatment, I was not able to find this place, so I am here now because a friend who is undergoing something similar to what I had to endure lead me here. Hopefully, I can help others with my story.

The dreaded diagnosis:

I had been dating a wonderful woman for 7 months when one day my tongue hurt when she kissed me. My dentist had noticed a white spot on the bottom right side of my tongue and said I might want to get that checked out and of course I ignored it. I went back (6 months later) after it hurt for a few days and they told me go see an Oral Surgeon NOW because the spot had grown! They even made me the appointment and sent me straight over. Eventually the biopsy results came back and it was the "C" word as we started to call it. My girfirend at the time and I could not even look at each other without being extremely emotional. That day was November, 5th 2002.

On to the ENT. Because of my insurance, I really did not like the Oral Surgeon, but tolerated him for the biopsy. The ENT he referred me to, I could only imagine what he could be like. To my surprise, my ENT is the best Dr I have ever had. At the time of the diagnosis, I was 32 and told him I wanted to fight agressively. I was naive.

Partial Glossectomy (lost right 3rd of tongue) and Modified Neck disection because a PET scan had found cancer in one lymph node followed by radiation was the prescribed treatment. December 12th, 2002 was the surgery. Spent 9 days in a intensive care step down unit because I had a tracheotomy tube to breath and feeding tube through the nose.

I was most scared of that proceedure because I had never had a major surgery. I was thinking, "Get through this and radiation will be a breeze." WRONG!

End of January I started radiation after having a chance to heal from the surgery and most surprisingly being able to talk at almost my normal sounding voice. The speech therapist glad that I came in before radiation as I soon found out how it could change the mouth mechanics.

Radiation:
I was lucky in a sense that my insurance at the time was quite good and they covered the Ehtiol shot to help save the salivary glands during the radiation process. However, first day, I found that both the shot and radiation treatment made me nausious. So a perscription for that was given to smooth things out. First week I dropped 5 lbs. Second week 5lbs. Just could not force my self to eat because it was so uncomfortable (mistake in hindsight). In went the feeding tube. It saved my life through the treatment, but I would try everything in the world to force food down orally rather than go on the tube again. If anyone wants stories, I've got them.

Radiation completed in the second week of March after 35 treatments and I had the tube removed in mid June. The mouth muscles had atrophied and mouth structure had changed so I had to go through swallowing therapy as well as speech therapy. Saliva did not fully recover for 14 months.

Treatment should be over at this point for most folks but I just had to be different. Because of the radical changes to the mouth structure, I had four wisdom teeth that no longer fit and kept getting gum infections. Since I had radiation, I ran the risk of ORN (Osteoradionecrosys or bone death). They were afraid the reduced blood flow to the jaw area would not allow the gums to heal when the 4 teeth were pulled. So, I had to do 6 weeks in a hyperbarric chamber to promote healing. 4 weeks before the surgery to remove the wisdom teeth and 2 weeks after. By a stroke of luck, this also healed all the external scars from the surgery so that most of them are barely visible. I did use vitamin E lotion as well, but there was a noticable difference after the hyperbarric treatments.

Now I regularly talk to my ENT's patients, that want to talk, about what they may experience and what to expect. I've even tried to voluntier for the area American Cancer Society but they keep dropping the ball to use me as a resource. And now I am here, to offer my support to those of you who may be going through some of the same things I did in my now 4 year long journey. And come this Nov/Dec, I expect all of us to celebrate the 5 year mark of my being cancer free.

BTW, I married that girlfriend of 7 months who sat in that office hearing the dreadful words "You have cancer". She stuck by me through some very difficult situations. We are entering our 3rd year of marriage and loving our life together.

Jim

Jim,
Hello from another Texan. I was diagnosed a few months before you, July 2002 and finsihed chemo/radiation in Sept. 2002. Congratulations on your being cancer free for over four years. I had my six month CT scans and Xray last week and I am proud and happy to report that, after four and one-half years I too am still cancer free and living a great life,and looking forward to the five year mark and beyond.

I don't know if there is a similar organization in Dallas, but in Houston we have CanCare in which volunteers, including myself, are assigned new patients with similar diagnoses, in order to provide a little support and mentoring to those about to go through what we have already endured. Your desire to serve others is admirable. My wife now volunteers at MDACC one morning a week, pushing around a cart offering free coffee and hot chocolate to patients and their families.

Your ordeal sounds harder than mine as I had no surgery, other than a trach for a while, and a few esophageal dilations. It sounds like you have done really well young man. Keep up the good work.

From one of the fortunate ones to another.

Danny G.

P.S. Good luck on landing a new head coach for the Cowboys.

Another southerner, my cancer went south, but it is refreshing to hear from someone that is in remission. I hope you stay cancer free forever, this is a horrible disease.
Darrell

Jim,

Always happy to hear about someone surviving longer than me, especially since I'm only 4 months out. LOL Congrats

What type of rad did you have?

Jim, Welcome to the board. Thanks so much for sharing your story. I am 6mos. post treatment and you and others give me hope for the years ahead.

Jim, What a wonderful story. You have been thru a lot, and to be so lucky to have found such a wonderful girl who stood by you is really remarkable. I'm sure with everything you have been thru at such a young age you will inject a lot to this forum. Congrats, Mark.

Jim;
So happy to hear your story and looking forward to your "5 year mark" which will bring several of us "newbies" close to or at our first anniversary.

Also, sounds as though you truly met your soul mate. Going through what the two of you have from the beginning makes for an unstoppable relationship!!

Steve

Thanks all for the kind greetings.

As for my wife, at our wedding rehearsal, she told me "We have already taken care of the In sickness part, lets go for the healthy part from here on out." So far, so good...

That sums up our whole relationship and how we approached the ordeal.

Jim

Jim,
greetings and welcome from another 4 year survivor! I was Dx'd a few weeks after you and our stories are very similar except I had a tonsil cancer and had been married only 2 years at the time. I also had radiation and chemo only and managed without a PEG. I even had the same experience with ACS! Did you have IMRT?

I survived, the marriage survived and life is good today. I am doing things that I never thought that I would do while healthy, let alone post cancer Tx.

Jim-
Greetings! I too was engaged when I heard the big "C" word! Five years ago this March 25th!! He not only didn't run, but suggested we move up the wedding date so I could eat the cake! All is well and I'm looking forward to dancing at my youngest's (11 years old) wedding someday in the future. You'll be dancing at your children's, too! - Kris