Talk Shows & Stories : Featured Stories : Mary

Mary: Paraganglioma

Recorded October 2, 2001

Listen With 11 minutes, 12 seconds.

Username: beth

Mary: Five Time Survivor

My name is Mary. I'm 48 years old, single, never had any children due to the kind of tumor I had. In 1973, while driving home from a trip to Oklahoma, a woman with children drove out in front of me to go into a bar. I was so outraged that I pulled behind her and she proceeded to back into my car. Needless to say, I got out and started yelling at her. When I got back on the road, I noticed that I had a small painful lump in my neck, so as soon as I returned home to Texas, I went to the doctor to see what it was.

At first I was told it was an infected node. I was started out on antibiotics, and when it didn't eventually go away, was scheduled to have a biopsy. The biopsy was said to be normal. Months later I decided the bump, which had now grown, was not in fact normal and needed to be reevaluated. As a nurse at the time, I approached a surgeon, tests were done, and I remember telling him that it was not normal. I remember telling him that if he said it was normal, I was going to get up, walk out, and see yet another doctor. He was a kind of country doctor and gave me a smile as he looked over his glasses. Tests were ordered and I awaited a diagnosis. The tests suggested that I had a malignant thyroid with probable metastasis, so surgery was scheduled within the week.

I remember going to sleep thinking one doctor was going to remove a malignant thyroid that had probably spread, only to wake up with another doctor saying, "You were very lucky, Mary. You had a tumor that was wrapped around a major artery so tight that had you waited another month you would have died from a fatal stroke."

Diagnosed with a Rare Malignant Tumor

On my 21st birthday, I was informed that I did in fact have a malignant tumor and that the only thing that meant was that it could grow back at any point in time. My family was very calm and the quest for information began. At the time, only 500 people had been diagnosed with this kind of tumor and treatment was very unclear. I was one of two children in my family to have this kind of tumor. My brother followed my path the next year, only his was different. His healing was different and he later had his lung removed from what they called a carcinoid. I'm always wondering if I'm going to have one of my lungs removed, too, since he and I said we were twins growing up. At the time, it was the only way we knew of to get candy. Little did either one of us know how much we were going to have in common.

From then until now the tumor has been back five times. The latest time, eight focal sites were removed during a 15-hour brain operation. Again, I had to convince the doctor that it was in fact a tumor, and hopefully for the last time I was told, "We have never seen a tumor do what yours has done." As a result of the last surgery, the left side of my face is partially paralyzed and they had to do reconstructive surgery to fill in the holes that were left by cutting nerves, muscle and bone. I tell people when I do public speaking these days that I had brain surgery so they won't have to guess what truck hit me or what the other guy looked like.

I attempted to get help from cancer survivors with little or no assistance. My kind of tumor doesn't respond to radiation or chemotherapy. I was later told, three years later, when the tumor did in fact recur, that it was in fact benign and it wasn't malignant, and even the experts were under controversy as to how to diagnose it. The sad part of it is the tumor can, however, kill me. So I live with the knowledge that if it does in fact grow back, I will have to have more surgery and may have to fight to get medical care yet again.

I know I would have been dead, right now, had I not been in touch with my body and had not been born a natural advocate. The process for me has been a lengthy one, and I am still not over my anger and resentment. I have learned patience, forgiveness, love and acceptance. I have a way yet to go to undo years of being told, "There is nothing wrong with you," or, "Oh, medicine is not an exact science."

Volunteering to Help Those with Chemodectoma

I have turned my anger into something positive, to volunteering with the Cancer Foundation. I originally called to ask if they could match me with a volunteer and when they found out they didn't have one, I proceeded to volunteer to help support anyone that may call them for support. The day I called in, a woman had called saying that she was told she had chemodectoma or paraganglioma and was desperate to get information, as her doctor had never seen one before. I remember telling her about the surgeon that I had the last time, how wonderful he was, and telling her to get a second opinion from someone who had seen more than anyone I knew. The doctor I referred her to had great skills for this kind of surgery. He was patient, open-minded, had a great sense of humor, and the only doctor I know who I would refer a person to.

I was told that there were three medical facilities in the United States that were qualified to do what I hoped to be the last surgery for this kind of tumor. I will refer them to only one, because I know he will call them back and give them options. He is a rare breed of doctors who will admit it when he is wrong, and is willing to learn what he doesn't know. For once I knew that I didn't have to play the role of doctor, he had taken that out of my hands. It did not, however, mean that he had all the answers nor did he know what to expect after the surgery. I laughingly will tell people that doctors are great at telling you what's wrong with you, cutting on you, and yet they fail miserably when it comes to telling you how to feel better about yourself when it's all over.

I consider myself very lucky, as I was told at least five times now that I beat the odds. I am a survivor, and by all odds should have died in 1974 had I not been the determined type. It took me a while to understand that my trust had been violated and my confidence in the medical profession had been shattered. My self-confidence had been shattered, and to get over the feeling that I was the victim of what I called "stupid doctors". I can laugh now and remind myself that my body not only didn't read the medical books, it decided to rewrite certain chapters just to train unsuspecting medical staff.

There is movement going on now for people with paraganliomas. They are sharing their stories and they are normalizing what I found out on my own. I no longer feel the isolation, the rejection, the hurt, well at least I do, but now I know that it's normal and deal with it in a positive way. I would encourage anyone with a rare disorder to go with what their bodies are telling them and to never give up. Go until that little voice in your head that's saying "I want to live" is satisfied with the answers that you get, and don't stop until it's satisfied. I have survived eight focal site paraganliomas to the head and neck in 1996. To date I am tumor-free, although not problem-free. It amazes me that Medicare paid to cause certain problems as a result of the surgery, but now they won't pay for the repair of certain problems that were caused by the surgery. So I have to wait for the rules to change and drink Ensure these days since I am unable to eat solid foods. I also play the song Cat Stevens sung in my head, "I'm being followed by a moon shadow. So if I lose my teeth, I won't have to talk no more." [laughs] At least that's how I sing it.

The saying "it can't get any worse" has jokingly taken on new meaning as yes, it can get worse. The follow-up on that is that nothing is so bad that God won't be there and life will go on. I found out that when the crying stops, smiling exercises and faith push-ups on a daily basis are a great place to start.

Dealing with Chronic Pain

No one prepared me for the aftermath of the surgery, as I had a stroke and I also developed a very painful nerve condition. No one could have prepared me for living with the intense pain now that has become an everyday companion of mine. I found out that anger, resentment and fear all make the pain worse, so I make an effort every day to avoid them. I find myself floating back and forth from days where I can cope from second to second, to days where I feel like the sun will shine regardless of whether I can see it or not. It's important that I remind myself to listen when others are telling me that I could miss out if tomorrow never came. Newscasts of assisted suicides, or when they talk about somebody who has just received the death penalty and then publish editorials about people like me in chronic pain who would gladly want to get a lethal injection, is simply not so. I think that it's so important to remind people that chronic pain can be draining, but it's more important to remind them that the universe has an energy source that is non-ending, that there is no shortage of energy; there is only a shortage of our ability to do things that we once thought used to be important.

I'm working on taking a nap when I'm tired, eating when I'm hungry and recharging when I'm depleted. I found out that people aren't awake, up in the early mornings when I'm awake and feeling alone, so I'm very lucky I have friends on the Internet who can share inspirational stories with me like "Steps to Happiness." I also learned that I am very vulnerable, as I have a serious cognitive disorder, so I'm still learning how to trust. I'm not as naive as I once was, meaning I don't take it to be Gospel when anyone tells me something. Sometimes I carry it to extremes and talk it out until it makes sense or until we can agree to disagree. Doctors are never going to be able to tell you with 100 percent accuracy what an illness is, how to treat it, or what the outcome is going to be. People need to know that treatment doesn't work, or that some will get better while others die. We may not have anything to do with the negative forces or the healing forces, but things are as they should be. There is no good or no bad, it just is. Just knowing that takes situations that I have no control over out of my thoughts, and reduces the pressure to fix that which cannot be fixed.

The road to acceptance is a daily journey that sometimes has its twists, its turns, and some days it has its mountains, and then sometimes it actually has black holes. There are no right and wrong paths when making decisions. There is only knowledge that you did the best you could with the information that you had. It's within your right as a patient to say no. When I would get the feeling that the diagnosis or treatments were obviously wrong, I held my ground and I wouldn't give in to what I was being told. I believe that people know when medical providers are off course, and they don't say anything because they want to trust the doctors. I think as patients and caregivers we can do both. Trust the doctor to have some answers, not all of them, and trust ourselves to know when it doesn't feel right, it's time to ask some more questions.

I did discover one thing, in the years, that I prided myself almost on the fact that I had a rare tumor and found myself getting more angry and resentful that no one had the answers for me. But there are some things that we all have in common when we have a disease or an illness and that is: the fear of the unknown, the desire to get better, the willingness to get information on proper treatment, and the desire to go on.

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