Karen: Sarcoma Cancer Survivor

Dedicated to tomorrow's friendship
Karen
Since 2014, Karen Daley’s life has been like a roller coaster ride, filled with ups and downs that have changed her reality. The bump that she noticed on her leg a couple of years previous while moving furniture, began hurting. Karen went to an orthopedic doctor who treated her with a cortisone shot. When that didn’t help, he ordered an x-ray, which showed a problem. He immediately sent her to an oncologist. 

“When he said the word oncologist,” said Karen, “it made me very nervous. I was 42 years old with a five-year-old child, so obviously it was scary. He made an appointment for me with Dr. Lindskog, who I think is one of the most amazing doctors at Yale.”

Dieter M. Lindskog, MD, Associate Professor of Orthopaedics and Rehabilitation at Smilow Cancer Hospital, is the Clinical Program and Disease Aligned Research Team Leader of the Sarcoma Program, a multidisciplinary team of physicians specializing in the diagnosis, treatment, and care of patients with soft tissue sarcomas and sarcomas of the bone. 

Following his examination, more tests and scans, Dr. Lindskog delivered the news. Karen had cancer in her leg, myxoid sarcoma, a rare cancer that is treatable. He recommended four weeks of radiation to shrink the tumor, followed by surgery, which Karen had in May of 2014. The checkups that followed were all routine.

A little over a year later, Karen started suffering from pain in her back. A scan showed that the cancer had returned in her lower back. Once again, radiation was recommended to shrink the tumors. 

“I again had four weeks of radiation in December of 2015. The tumors shrank some, but my doctors recommended I begin chemotherapy. My husband had a business trip scheduled in Florida in early January and I had planned to take my six-year old daughter to Disneyworld. My team agreed we could go and that I could start the chemotherapy when we returned.” 

“In January, 2016, I started my chemotherapy treatments with my Yale oncologist, Dr. Hari Deshpande, which lasted for a couple of months. It was rough but I was still able to work at my job as a special education teacher. I lost my hair within the first month. That was devastating. But I was so lucky that I had a great support system – my ‘chemo buddies,’ a group of family members and girlfriends who were willing to come sit with me … I never went to a chemo session alone. They helped me fight this disease and gave me the support I needed while I was getting my treatments.”

Towards the end of the school year, Karen was facing new problems with her legs. She needed to use crutches and a wheelchair to get around, was in pain, and ended up homebound for about a month, not knowing whether she would be able to walk again. Dr. Deshpande offered her a clinical trial with chemotherapy given in a pill form. The trial would compare the drug with a placebo (an inactive drug, sometimes referred to as a ‘sugar pill’). Neither Karen nor Dr. Deshpande would know whether she was taking the drug or the placebo. 

“I said, that’s ok with me. Whatever we need to do to fight this. I began taking the pills in May. Then late June came and all of a sudden I began feeling good again. I started to walk. My birthday was at the end of June and I was able to go out. Something had happened. Call it a miracle if you want to. I’m pretty spiritual, but all I know is that all of a sudden I was miraculously better.” 

“I had to go back in for scans in July and at that point they would be able to tell if I took the real drug or the placebo. Lo and behold, it was the placebo. At that point I was feeling much better. The doctors couldn’t explain it. None of us know what happened.” 

“Dr. Deshpande told me I should now take the chemotherapy, the real pills. So in July, I started on the chemo pills. And within two weeks, I had gained 35 pounds, had so much fluid and was having trouble walking again – all side effects of the real medicine. I told Dr. Deshpande, ‘I can’t do this.’ So I took a break and in August we started with another chemo drug, this time intravenously, which I took until the end of November. I was feeling good and the scans showed that, although the tumors are still there, they had not spread. Dr. Deshpande decided to stop the treatment and I had a good holiday.” 

“The scans this January showed better results. The spots were still there, but stable. The original spots that I had at the bottom of my spine had decreased in size. That was so wonderful. At this point, I’m not on any chemo and I continue to be monitored.”

“I can’t say enough about Dr. Deshpande, my nurse in orthopaedics Barbara Viglione, and all of the other nurses, the techs – all the people at Yale. They are such an inspiration. They help me keep a positive attitude. My husband, my daughter, my parents and brother, the teachers at school, my family and friends -- all have been so encouraging.” 

“I would advise other patients to take a step back. Look around you, at what you have in life. Get inspired by the simple things in life, pray, listen to music. Practice seeing the glass half full rather than half empty. Share your story. Open your heart to others and let them help you fight your disease. This is how I cope and live a great life even though I have cancer.”