I edited stories of longtime survivors when I was on the board of the Sarcoma Alliance. Those stories were lost when the Alliance updated its website. This is one of them. — Suzie
By Sara Cambreleng
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. Bob had been diagnosed with Meniere’s disease and couldn’t work anymore.
Over the years, I have 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 ended up taking care of Bob, who died in 2013. I then moved south to Molalla, OR. I’ve always loved antiques, and now I sell them at Showcase Antiques and More at Hoffman House Antique Mall, 523 E Main St., Molalla.
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 hated 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.
Sara’s shop
Suzie Siegel 