(Squamous Cell Carcinoma)
I discovered the world in 1925 which means I'll be 74 this year (1999) a few days before Y2K, and in January, 1988, I was diagnosed with widespread Squamous Cell Cancer of the mouth and tongue. As soon as the multiple biopsy report was available my Head and Neck Surgeon in Alexandria, La. told me that I needed to go to a teaching hospital where a lot of this type of cancer was treated. He also told me that a radiologist would tell me that radiation was the most advisable route to treatment, but said that being a surgeon he saw that as the most reliable mode. There had been a number of biopsies over a 15 year period due to sore mouth that always came back negative for cancer. This time in 1988 however an oral surgeon's biopsy turned up Squamous Cell Carcinoma to the gingiva. He referred me to the Head and Neck surgeon who requested additional biopsies of the tongue, gingiva and mucosa of the mouth in eight different locations. These are the ones that showed malignancy in all locations.
As with others the diagnosis was a real shocker, but it had been suspected a long time. My surgeon referred me to the Veterans Administration Medical Center in New Orleans where there was a good Head and Neck department where a number of surgeons had fellowships in Head and Neck Surgery.
My first big surgery required the removal of all teeth and two weeks later a partial maxillectomy on the right side was done removing a part of the maxilla, and deliberately leaving a fistula for easy inspection into the sinus so that examinations would be facilitated. I still have the fistula after eleven and a half years. Subsequent surgeries followed at one time about every four to six weeks, as second primary sites appeared or became worse. They included bone shaves to the mandibles on several occasions, removal of just about all of the gingiva near the surfaces where the teeth had been, both upper and lower, excision of part of the tongue and excision of second primaries in both cheeks. Several years after the right partial maxiillectomy a an orthoprosthedontist worked with me in an attempt to fashion a removable prosthesis to cover the fistula where part of the hard pallet and soft pallet had been removed in the first big surgery. It did not become functional and finally was discarded after several months. No teeth could be fashioned because too much of the maxilla and mandibles had been removed.
The apparently superficial second primaries were removed by laser, but those that appeared more invasive were excised. Over the course of the next five years a total of 15 surgeries were done at New Orleans, with the "smaller" ones done at Alexandria, La.
In 1994 my faithful and compassionate surgeon in Alexandria told me it was time for me to go to M. D. Anderson Cancer Center in Houston, because "we are not getting ahead of it". My cardiologist in Houston referred me to a surgeon who referred me to M. D. Anderson. That was the way it was done then. Now self referral is possible and a number of people I know have referred themselves.
In 1994 I had another "biggie" with a radial free flap to the left side, with removal of part of the maxilla, hard pallet and soft pallet, and reconstructive plastic surgery. This one required a tracheostomy that lasted a while and a nasogastric feeding tube that stayed with me for about five months as I took speech and swallowing therapy. That one took eleven and one half hours, and I was in ICU a week after that, and stayed in the hospital several days after that. I began swallowing slowly but depended on the nasogastric tube for nourishment until I got by without it. A 40 pound weight loss happened but now I'm back to 172 pounds.
Early in 1996 I entered a chemo prevention program at M. D. Anderson that failed to stop the second primaries and additional surgery ensued. In December 1996 a chemo program of Methotrexate was started that seems to be keeping the dragon asleep. First I had it weekly for six months, then every other week, until new lesions appeared the oncologist prescribed that I go back to weekly chemo. This particular chemo is given IV, but can be administered IV Push for some patients and that is how I now receive it. The mouth lesions appear to be reducing. This is being written in August, 1999.
During this eleven and a half years, which included 23 surgeries for mouth cancer and over two and one half years of chemotherapy, I have continued in my full time law practice in Alexandria, La, with time out for surgery and recuperation. The longest I have been away from the office was about two and a half months in 1994, but in 1994 I also had three way heart bypass. I couldn't have come to this place in my life without the encouragement and strength of my beloved wife, Jo Anne.
As strange as it seems, my cancer journey has been a period of spiritual growth, and has caused me to become less demanding of myself. This has lead to my trying to express myself by writing more extensively than in the past, which has produced one book that was a local best seller, and numerous poems that have been published in different publications and on several Internet sites. One of the biggest pluses of the stewardship of this disease has been the experience that permitted me to understand better the fears and hopes of other cancer patients. Since the time of my first big surgery in 1988 a local cancer support group has been a big part of my life and has permitted me to become a co-facilitator of that group. Another facilitator and I have written a guide to forming and maintaining local cancer support groups. See: A LOCAL CANCER SUPPORT GROUP.
My faith in God's ultimate goodness has become more focused and this has led to a Peace that I wish all other cancer patients could experience.
Blessings,
James