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| By Donald B. Dunn
The following is a short history and update of my medical condition.
In October, 1998, I felt a soreness in my tongue. I had a medical appointment at the VA that week and I brought up this soreness. It was dismissed as something that would go away.
A few weeks later I had an appointment with my rheumatologist. At this time we started treatment as if the soreness was caused by a reaction to medication not unusual based on my history.
The soreness continued into March of 1999 at which time it became much worse and I also developed trouble swallowing. I contacted my primary care physician and the nurse told me (over the phone) that it was going around and would cure itself. She would not make me an appointment.
The next day I went to urgent care and they examined my tongue and took samples to test for strep throat. The results were negative.
My condition worsened and my rheumatologist contacted my primary care physician and coerced a referral to an Ear, Nose & Throat (ENT) doctor. I think the ENT knew what it was upon first looking but he refrained from a diagnoses until he took swab samples and a biopsy. On 30 April, 1999, the ENT (Dr. Emani) told me I had a cancer in the right side of my tongue.
The cancer was advanced and very large. This was confirmed by two CAT scans and an MRI. It was the consensus of an ENT , a radiation oncologist, and a medical oncologist that surgery was not an option. The size of the cancer would require my entire tongue to be removed along with my voice box essentially opening my head like a Halloween pumpkin and scraping out the entire insides.
At this time the radiation oncologist took charge of my case and a finer doctor I have never met. Dr. James Oleson is the head of the Radiation Oncology Department at the cancer center run by the University Medical Center and a full professor at the University of Arizona. He is very knowledgeable and compassionate with an ability to talk to the patient clearly and in a straightforward manner.
He opted for a very aggressive course of treatment developed by Duke University. Normal radiation treatment is once a day I went twice a day for seven weeks with a one-week break in the middle. Concurrently, I underwent chemotherapy at a clinic near the Northwest Hospital. The vagaries of HMO approved doctors had me travelling all over Tucson.
Prior to starting these treatments I underwent two minor surgeries. One to insert a catheter in my chest for the purpose of receiving chemicals over an extended period of time and the other to install a stomach feeding tube. I have not eaten orally since May and have not taken any liquid orally since October what I wouldnt give just to drink a glass of water.
After completion of this course of treatment, my radiation oncologist was convinced that the tumor was gone. My ENT, however, was convinced that he still felt hardness inside the tongue. I started a 6 to 8 week recovery period from this very trying treatment the radiation continues to work even after the treatment is stopped.
Toward the end of this period I was again experiencing difficulty in swallowing. The ENT was sure he felt hardness in the tongue.
A new biopsy and CAT scan confirmed that the cancer was still present and growing rapidly. A rare aggressiveness in a tongue cancer, which is normally slow in development.
Surgery had become a viable option due to the reduced size of the cancer and was immediately scheduled.
On 29 October, 1999, I underwent 8 hours of surgery. Dr. Emani essentially cut my throat from ear to ear. A second incision was made that went from the middle of my lower lip down to the first incision. All my teeth on the lower right side of my mouth were also removed. This allowed them to open up my entire mouth. They removed the tumor and enough tissue around the tumor to make certain I had a safe, cancer free margin. About ¾s of my tongue was removed. Remember, the tongue is attached to the mouth on the bottom and quite deep down the throat.
This area was all reconstructed by taking muscle tissue from above my right ribs so I had a large ncision in that area also. They also removed three lymph nodes from the right side of my neck. One had cancer in it but it was encapsulated (had not spread) and the other two were clear.
A trach was inserted to allow me to breathe. I hope to have the trach closed in January, 2000, and removed shortly after. This will allow me to start speech therapy, which includes learning how to swallow.
I am now at home recovering. Dr. Emani has strongly suggested that I should never return to work. When I told him that I was eligible for early retirement in June of 2000, he was very pleased.
So, it looks like I will retire. Candy will quit at the same time and so will begin our new life. We will stay in Tucson for a year or so but we intend to eventually end up in Pennsylvania where Candy grew up somewhere in the Berks or Lancaster county area. (about 50 miles west of Philadelphia).
I have spent time on the internet and prices look very reasonable, even for houses with acreage.
Dr. Emani has said that my attitude and the strength of my support group will impact my recovery.
Candy has been absolutely tireless as a caretaker my trach has to be removed and cleaned four times a day. And the many cards, letters, visits, and phone calls have tremendously bolstered my attitude.
I have been included in prayer groups from coast-to-coast. A minister in Garland, Texas, even inquired if we needed one or two members of the church to come and help - from Texas to Arizona!! How can I not have a positive attitude with such support.
My deepest thanks to all of you for your concern. I am cancer free and only need time to build myself back up I went from 163 pounds in December, 1998, to less than 110 pounds after surgery. Im back up to 120 pounds and am becoming more active with walks and short excursions to local stores.
Recovery is so much easier with so many people pulling for me. I am also very pleased with the response of both Partners (I think it has another name now) and Met Life throughout this whole situation. When I came home from the hospital we had already received a months worth of supplies with Partners approval this includes my food which is a high protein type liquid called Jevity Plus. I have to take 7 cans a day or nine cases a month at about $35 per case and Partners will foot the bill indefinitely -maybe the rest of my life.
They are also supplying a suction machine, a moisturizing machine (it supplies moist air to a mask that fits over my trach when I am sleeping or sitting for an extended period), trach cleaning kits and other miscellaneous items.
My doctor suggested that we shop around for a used hospital bed as that would help me in controlling the gunk that accumulates in my throat. He checked with Partners first and they approved the bed also!
Controlling the gunk (I cant think of a better word for it) is the first step in getting the trach removed entirely. They also approved a patch as method of absorbing pain medication much more expensive than the liquid type I was using.
Met Life has been very responsive in managing my disability payments both short-term and long-term. They are also supplying a lawyer to manage my application for disability from social security. Of course, this helps Met Life, as it will offset their disability payments.
The best help has come from Vickie Dahlgren. She has been our interface with the company and has done a marvelous job answering my questions, supplying contacts, keeping me up on whats happening at work, and all with her normal great attitude.
Vickie, you have been a tremendous help and it is greatly appreciated.
My thanks to all.
PS I can be reached via e-mail at firstname.lastname@example.org , via FAX at 520-797-4922, and at voice line 520-797-7498 (ask for Candy as it is very difficult to understand me).
Merry Christmas and a Happy New Year