Barbara: First a caregiver, then the patient

Listen With 7 minutes, 17 seconds.

Hello. My name is Barbara. I was a caregiver for several years for my husband, who had colon cancer and died in 1992, when it had metastasized to his liver and pancreas. In 1993, I had developed a sore under my tongue which did not go away. After having worked for an oral surgeon for twelve years of my life, I knew the importance of getting this area biopsied. The biopsy came back with a diagnosis of squamous cell carcinoma.

Diagnosis and treatment - a convoluted journey

Well, I was horrified with this news, and knew I had no choice in the matter but to proceed with radiation and all necessary surgeries, which included a hemimandibulectomy. My lower teeth were removed and the mandible was shaved, trying to get all the cancer. Although the surgeon attempted to remove all possible traces of the cancer from my mandible, the cancer had gone deeper into the bone, necessitating the hemimandibulectomy. Through the years, I had about 50 hyperbaric therapy treatments to attempt to increase blood flow in an area in my neck where a fistula had formed. My saliva would drain to the outside of my neck every time I swallowed. The doctors had hoped that the hyperbaric therapy treatments would help, but they did not.

After about four surgical attempts of going into and clearing out the fistula and doing abrasions so that the fistula would close, it was not working. I had a 22-hour surgery where my doctor and his team took a 16-inch graft from my upper thigh and applied it to the outside of my neck. They then took another graft, called a free flap, from the inside of my arm and an artery, and used these on the inside of my mouth and throat, to give more blood supply and to close the fistula. I had tracheostomies during all these surgeries and couldn't speak for long periods of time. I am still having small surgeries, as recently as April of this year, to release scar bands, to facilitate range of motion of my neck and head.

The doctors wanted to do reconstructive surgeries, which would involve taking a bone from my leg called the fibula. This would include grafting part of the fibula to return the continuity of my jaw and face so that I would not have the deformity. I would need multiple surgeries after that to create ridges that would facilitate implants, to hold teeth. But I have decided against this reconstructive surgery. There were no guarantees that the fibula would be a good choice for that purpose, or that my temporomandibular joint, which has been free-floating for several years now, would work. Psychologically and physically at 62 years of age, I have been through enough. I am how I am--for as long as God is willing.

The aftermath - living with complications and limitations

Every day I deal with a great deal of discomfort when I speak, because my tongue is attached to my cheek. A good part of my life is spent dealing with daily life functions. It has been my choice to combine the canned nutrition with fresh fruit, vegetables, and vitamins that are pureed in a blender, thusly administering through my gastric feeding tube because swallowing anything of any great thickness is very difficult. Not being able to really join in at work or with my family--I become very fatigued--and speaking is very difficult. After much speech therapy, I am told that my speech is 100% intelligible, but certainly not without a tremendous amount of effort and self control.

Also, I know that all cancer survivors who have had head and neck radiation have this problem; I no longer have functioning salivary glands. So I have a very, very dry throat and mouth. I still have my taste and smell, which is good and bad. My friend Joe, who had cancer of his tongue, has lost these senses. So he can go into a restaurant where he can't smell the food, and it doesn't bother him, but it really bothers me. Why be in agony of wanting something that you can't ever have? And it's embarrassing--so I go off to a private place and see to my nutrition, via my feeding tube.

Sharing her most important lessons

The most important topic that I would like to share is that you had better learn all that you can about your disease so that you can become an intelligent patient and survivor. And to feel free to discuss with your surgeons and oncologists any questions you have regarding your disease and what you will be faced with so that there will not be any surprises when you come out of surgery.

I am a very unusual person, because I have every note, every case history and medical procedure that I have ever had. That's the difference between me, and probably the majority of human beings. In cases like this, you have to know what to expect and what is going to happen, and what survival will include for you. With this kind of cancer, it is very important that you know exactly what to expect. How absolutely impossible your life will seem just to get through on an hour-to-hour basis. You must know, and your loved ones must know, what is going to happen before this operation so they can help you cope, because you will be scared to death. When you wake up with a tracheostomy and you can't speak and you don't know how to take care of your trach or your gastric tube, and you have pain you had better educate yourself.

I hope that this brief story of my illness will help anyone who is facing this very difficult decision regarding head and neck cancer, and its terrible outcomes. Again, do your very best to keep a positive attitude, be extremely determined, and pray that God will give you the strength to get through this very, very difficult time of your life.

Thank you for listening to my story and God bless you and yours.

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