Just before Thanksgiving 1998, I noticed a lump on my left index finger. It really didn’t bother me except when I used the signal post in the car. Shortly after Christmas, it became a little more sore, a little larger. By mid-January, my finger seemed to be “twisting.”
It took a week to see a doctor, who gave me antibiotics. Five days later, my finger was swollen, red and sore to the touch. I was sent to a general surgeon for a needle aspiration. He took one look and said he didn’t feel qualified to do this. He sent me to a hand surgeon. It was now February.
I was awake during the surgery, and I knew it was serious when he said he had never seen anything like that before. The following week he gave me the news: leiomyosarcoma.
Since he had not gotten clear margins, and it would be impossible to do so, we decided on amputation. I had a chest CT at this time and it was clear. Following the surgery, however, another CT showed 13 metastases in my lungs.
An oncologist set up a consult with a sarcoma specialist, and we decided to go with MAID chemo [mesna, Adriamycin, ifosfamide and dacarbazine]. MAID is horrible. It’s called the “red death.” [Adriamycin is red.] It brings you to death and then brings you back. At the end of five rounds, I told my doctor: “I can’t do another round.” But I didn’t have to. My lungs were clear, and the LMS has never come back. The chemo saved my life, but I don’t think I could do it again.
I was 51 then, living in Bethlehem, Pa., with my second husband, Bob. He had two daughters and I had two.
My first husband was diagnosed with cancer the same year that I was. We were divorced but still very good friends. We fought our cancers together. He had lung cancer from breathing asbestos, and he died the next year.
Sometimes I wonder if I got cancer because my parents refinished furniture a lot, and I was exposed to those chemicals. I tried to research LMS, but there was hardly anything online in the beginning.
I found the LMS list on ACOR [the Association of Cancer Online Resources], and I participated for a few years, but a friend I’d met online died, and I had to back away. I just couldn’t deal with the sadness anymore. I just pulled away from everyone. I was depressed and I couldn’t deal with anyone else being sick.
Almost everyone I knew from the list has passed away.
Bob and I moved to Oregon in 2001 because we couldn’t afford where we were living in Pennsylvania, and Bob’s children were in Oregon. I had been diagnosed with Meniere’s disease and couldn’t work anymore.
Over the years, I have also been diagnosed with lupus, Sjögren’s syndrome, antiphospholipid syndrome, basal-cell skin cancer on my head, and squamous-cell cancers in my pelvic area. I lost five babies.
At first, Bob and I lived in the mountains, and we volunteered as first responders to accidents and fires. We got certified to give first aid until professionals arrived. I’m proud to say that I saved a few lives.
I’m not ultra-religious. I can’t say God decided to spare me for a particular reason. But when I did the EMS work, it was to pay it forward.
I loved our cabin, but I couldn’t keep up with shoveling snow and bringing water in. It was 18 miles to get your mail, 18 miles to the mini-mart, 18 miles to an ambulance, and two hours to a specialist.
In 2009, we moved to Portland. I’ve always loved antiques, and now I sell them in a shop in an antique mall. I also take care of Bob, who is very ill.
My advice to others with sarcoma is: Don’t just accept things without questioning. Make sure you have a good doctor whom you trust, and one who is willing to send you to a specialist for a consultation.
One thing I hate hearing is, “You’re going to be fine.” “Oh, you look so good. I just know you’re going to beat this.” “I had an aunt who had cancer and she did great. What kind did she have? I don’t know.”
It irritates the life out of me. People need to be encouraging, but don’t deny what patients are going through, like it’s nothing.
How do I get by? You do what you’ve got to do.