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I became a survivor when I was diagnosed in 1998 with leiomyosarcoma.
I thought I had a yeast infection, so I went and got some stuff, but it didn’t take care of it. My doctor gave me a real strong antibiotic, but I went home and it got worse. I went back to Dr. Grubb a couple of days later, and he sent me to a neurologist. I had my first cystoscopy. They did a whole bunch of x-rays. I am thinking something’s wrong, but I never dreamed what was going to happen, not in a million years. I had the inner ultrasound, x-rays, an outer ultrasound. I did everything. They absolutely couldn’t find anything.
I went to the hospital to get an MRI done. At that time, they did find the tumor. They called me back and were very baffled about the whole thing. They wanted to do surgery on me. I thought it was odd that a gynecologist and urologist both wanted to do surgery. So I said, “Okay.” The next morning, I went to do the laparoscopy, but when I woke up, I didn’t have a laparoscopy. I had 40 staples across my stomach, and they told me that there was a tumor behind my uterus and bladder. They told me it wasn’t cancer. Everything’s great.
Later, the doctor called me and said, “Marilyn, I need to talk to you. We got the results back from UCLA. It is cancer.” So these last five days, I’m thinking I’m not in the red anymore, and nothing was wrong. Then it was a bombshell. I was scared and asked him, “Am I gonna die?” And he goes, “I don’t know. You got to call your family together, get your will in order, and get your things in order.” They knew nothing about it. It was so rare that they didn’t know the name of it. It was a few days later before I even found the name of it.
My husband was upset, and he wanted to go to different doctors. Every one of them wanted to do the same thing. They wanted to take my uterus, the tubes and the bladder. My sister-in-law, Teresa, had made an appointment at Norris Cancer Center. They wanted to schedule me for surgery in a couple of days. Dr. Skinner showed me the x-rays and said that this is what she thinks. The worst scenario is if we did it her way, she was going to go in, get the margins, get more of my bladder, and see if there was more cancer. If it was throughout, they would take it. If not, they would leave it. It would grow and expand. If it came back, then they would go in again and take the bladder out. I was so young that they didn’t want to give me a bag.
They found a lot more cancer, and they think they got it all. They got the margins. They got the rest of the tumor, and they went ahead and told me that I had to have the schedule of the mammograms, cystoscopies and x-rays for a long time after that to make sure it wasn’t gonna come back. Dr. Skinner was awesome.
I have a fear of dying, even now. I don’t share that with my husband or my kids. I’ve had so many surgeries since then. They took a bone out of my foot, and I thought it was cancer. They operated on my shoulder. It was cancer. Of course, I’m gonna die. I’ve always had that fear that no matter what it is, it’s cancer. I couldn’t sleep at night. I got to go home and the nurse left, and I was afraid of being alone. My family was there, but the nurse wasn’t there. It was weird. It was this connection with the doctor and the nurses. I thought if I left them, I would die. If I went home, I would die. As long as I was there, I would be okay. They could watch me and take care of me, but I had a real fear of dying at home. I got over the fear with grace, praying, realizing that I’m not gonna die, assurance with my friends, and assurance with the doctor. It took a long time for me to realize. I’m not gonna live being afraid of dying. I’m gonna live rejoicing that I’m alive. I’ve always been positive. I’ve always had a real outgoing personality, and I think that’s what brought me through. I can laugh and I can sing. I think that’s what finally drove the fear away. The fear was incredible.
Every day, I still have survivor guilt. I know that God has a purpose for me, and I just accept that. When I was at Norris Cancer, I looked at some of the kids there. A little girl in the room next to me, I know I heard some crying. I lost my grandson at two-and-a-half years old, and I told the Lord I would have been glad to have taken his place. I still can’t understand why I survive and other people don’t. Survivor guilt is the worst. I feel like I’ve lived my life. My kids are bigger now, and I’m ready to go a lot easier now if it came back or if anything else happened. I could face it better now.
Sometimes I get depressed when I see children that are suffering with a cancer. I get depressed when sometimes things go really wrong and I wish I would have gone. But depression is a real big factor. One time, Dr. Skinner wanted me to come to the hospital. She wanted me to pack a bag. I thought, “That’s odd.” I thought I was going to go see her. When I got to Norris Cancer, and I went to the doctor that she wanted me to see, it was a psychologist. They have oncology psychologists. This doctor deals with people that have just been diagnosed or have been diagnosed and are terminal. She wanted me to see him. I realized how depressed I was. I talked to him for a couple of hours. He understood what I was going through. He told me that if I wanted to come back, he wanted to see me on a regular basis. He wanted to put me on medication. I said, “No, I’ve had enough. I’m gonna be okay.” I knew I was gonna be okay. It was just a period of time. He told me that it took time.
Live strong means taking your whole life, your survivor experience, and all your foundation, your convictions, and your love, and it’s wrapping it all. Live on your convictions. Live on your standards. Live life to the point of not hurting anybody else. Be an example to your kids and to other people living strong. Being healthy and being who you are.
I live strong by eating breakfast. I started eating three meals a day, because at times I didn’t eat a lot. That’s why I’d gained a lot of weight. I wasn’t eating well, because I was so busy. Cancer made me slow down, made me realize I better get my priorities in order. God, family and my husband. It showed me I had to take time for me and to be a live strong example. I started eating right, exercising, being the best neighbor, the best friend, and I wanted to be a light to them. I wanted my life to be strong, because I feel like through that I have gained more strength. I’m a very strong person now. I want to live that, and I want to help anybody that needs to be helped. I’ve been there. I’ve done it. I want to live strong the rest of my life. Living strong is not only being healthy and happy, but it’s facing some really hard times. When I think of living strong, I think of the eagle, because the eagle flies above the storm. Living strong, to me, is being an eagle soaring the storms and the troubles of life and coming through them strong and happy.
We’ve experienced a lot in the last six years, a lot of tragedy and a lot of the unknown. That’s where I learned that when it’s dark and it’s unknown, the Lord goes before you and lights up the way. You take it by faith, and I don’t want to live a day of my life without faith. If I could say anything in the world that I could, I would say that all my life I’ve lived for the Lord and I have not regretted one moment. When I was diagnosed with cancer, the difference in my survivorship was that I didn’t have to turn to him in time of tragedy. I didn’t have to think maybe God’s here, maybe God’s hearing me, maybe if I’m really good for the next couple of weeks, he’ll hear my prayers. The key that pulled me through is the faith and the assurance I already had grounded and rooted in him. Because I never had to doubt that he was there.
My name is Marilyn Gourdeau, and I’m a seven-year leiomyosarcoma survivor.