I became a survivor when I was diagnosed with ovarian cancer on August 3, 1997.
I was experiencing incredible pain in my abdomen. I couldn’t eat. I was feeling full when I did eat. My waist was getting bigger, but I was losing weight. I was pretty haggard. Again, I attributed it all to my normal work and family life. I went to a family doctor in Sacramento. I started going through a series of tests with a variety of different doctors. They did all the normal things that one would do when you’re having abdominal pain. They found a mass finally when I went in for a vaginal sonogram, but when I said, “Could I have cancer?” they said, “Oh, no, no, no. You don’t have cancer.” I had a very elevated CA125. They still thought I didn’t have cancer. They thought I had a bladder infection, so they put me on antibiotics. Finally, the doctor said, “I think we really should go in there and see what’s going on.” When I came out of recovery, he told me not only did I have cancer, I had Stage 4 ovarian cancer. It was in my liver. I probably had about three months to live. He had scheduled an appointment with the doctor at UC-Davis for surgery the following Thursday.
I had a cousin there, who was a doctor, and I remember looking over at him. He had this freaked out look on his face. Of course, my son and daughter-in-law started to cry, and I was in shock. We made an appointment to see Beth Carlin at Cedars. My cousin, my brother, and my oldest son bombarded her with questions about everything. She examined me and said, “The first thing I want to tell you is that you don’t have Stage 4. You have Stage 3-C. It’s not great, but it’s certainly not Stage 4. And it’s not in your liver.” She was wonderful. I told her that we had other places to go to interview doctors, and she said, “Fine.” She would make arrangements, if I decided to use her, to come back in a week and she would do the surgery. So we left and went to San Diego, and we interviewed a man from a complementary clinic outside of Tijuana. Then we were flying back home to Northern California, and I just fell apart finally. I remember saying to everybody, crying, that this was ridiculous. I was not going to fly around the world to find the best doctor, because there obviously wasn’t a best doctor. There were a number of great doctors. If I ended up in Texas, who was going to be there to support me? I wanted to go to Los Angeles and have Dr. Carlin do the surgery. So we went home. I packed my bags, got myself together and went back down to L.A. I had surgery on August 13, 1997.
My brother arranged for me to have massages every week, which was glorious. I was eating really healthy. I started doing my own research. That’s when I really got into the complementary medicine. On two different occasions, they did the blood work, and my blood counts were too low for me to have chemo. I called my acupuncturist and he said, “Come on in and we’ll do two treatments.” I went back and had my blood work done and the blood work was up. So, to me, that was empirical evidence that there was something going on between acupuncture, my immune system and my blood cells. So I am a huge proponent of acupuncture. Seven years later, I still go at least once every two weeks. Sometimes I try to go once a week.
I’ve done a little bit of a lot of things. After about three months, when I was all through with chemo, I woke up one day and my joints were making noises. I couldn’t walk. That was very scary. Nobody knew why. My acupuncturist sent me to a Feldenkrais practitioner. Feldenkrais is a form of body manipulation. I went to her for almost a year. Between the acupuncture and Feldenkrais, I started doing Pilates. I consider that all to be complementary medicine and making me healthy. I don’t run anymore, but my joints are okay other than a little arthritis that I have. I saw a healer from Ghana. He comes to Northern California once every four or five months, and I try to make an appointment to see him. Wonderful man. I’ve gone to a lot of healing journey conferences. I do visualization; although, I haven’t been doing it very often of late, because I’m so involved in campaign work right now. I think it’s wonderful to visualize your wellness. I see a Chinese practitioner in San Anselmo, who is pretty famous throughout the United States and maybe the world. He put me on a vitamin and mineral regime, where the primary focus is to keep my immune system really healthy.
The year after I was done with chemo, I was scratching my arm and found a little tiny pimple that was so tiny that I almost couldn’t see it, but I felt it. Had I not gone through that experience with my own cancer, I probably would have picked it and forgot about it, even though I had an aunt who had melanoma 30 years ago. I called the dermatologist and said, “I’m going to be embarrassed, because it’s probably some stupid little pimple. Maybe I should come in and you should look at it.” She said, “You can come in here and be embarrassed, but I want to see you.” Lo and behold, it was a melanoma inside. I found it. She took it out and sent it to pathology and then took out a larger excise. I feel like I saved my own life by being aware and educated about what it means when you find new things on your body.
I worked for a member of the California state senate. I was the Chief of Staff to this gentleman. Legislation was introduced that would allocate $25 million a year to gender-based cancer research. There was not enough money coming from NIH and NCI, particularly for gynecological cancers. Governor Pete Wilson in 1998 signed it. Part of the legislation was an advisory council made up of doctors, scientists and biologists from the medical world, and then two or three survivors. The President of the Senate appointed me as one of the survivors to sit on this council. For two or three years in the State of California, we were able to give out research grants that were non-duplicative of anything that NIH was doing or any place else in the country. We were focused on gender-based cancers, innovative and creative cancer research and the transactional stuff. That was a very, very big thing, particularly for those of us who are survivors. We were focused at the California level on getting that research into the clinics. Unfortunately, California went in the toilet financially. The legislature had to pull back the amount of money that they were giving out. It has a horrible trickle-down effect, but the bottom line today is there is no money in that project. Some of the research grants are just now ending. The council still exists. We hope that as California becomes more financially solvent, perhaps we can get back into it, because it was cutting edge research. It was setting a standard for other states. We didn’t have to wait for the federal government to give us money. I did a lot of lobbying on behalf of the research. I met a lot of incredible people, who are doing unbelievable work.
I attended a cancer help program. My kids called it a cancer spa. It was fabulous. It’s a beautiful, beautiful, beautiful part of the world. The land sits on the bluff, on the mesa in Bolinas, overlooking the Pacific Ocean. There’s somewhere between six and eight people at a time, which is why the wait list is so long. There’s group therapy, individual therapy. It was one of the most unbelievable epiphanies in my life. They talk about when you’re diagnosed to death and dying. I think like most people who are confronted with this deadly disease, you always have this terrible fear that you’re going to die before you’re ready to die. When I left the program, I realized that I didn’t want to die. I have too much to live for. But my biggest fear was the pain that you read about people dying of cancer. It’s the worst kind of death you can endure. I realized that that’s not the case. You don’t have to endure that kind of pain. There are all kinds of options. It was an incredible experience, and I have told everybody who has cancer that it’s too bad you have to have cancer to go there. But I always recommend it. It was great. It was just fabulous. I had a whole new outlook on life.
What I try to tell people, especially these women who I’m peer supporting with, who are diagnosed with ovarian cancer, is that it’s not a death sentence. At some point in our lifetime, it will be a chronic illness. There are things that you can do to take charge. You have to be in control of your own medical life. Just because somebody has an M.D. after their name doesn’t mean they are right. They are all good people. Everybody’s trying to do the right thing. If you disagree with a doctor, you get to say you disagree. If you don’t like the way the doctor is, you get to find another doctor. These are all things I learned after being diagnosed with cancer. I found out that I’m pretty smart, and I can ask all the right questions now. Being intimidated by the medical profession is hard for a lot of people. I tell everybody that we can beat this thing. You got to stay healthy, take good care of yourself. Have a good life.
My name is Lindy Rose Graham, and I am a seven-year cancer survivor.