Copyright © 2000, Donna Mulinski
I am not even sure where to begin. I am a 34-year-old woman, married for 15 years. I have two sons, ages 14 and 7. I breed, train, show and sell purebred Arabian horses for a living. In April 2000 my life took a sharp left turn. In the course of routinely working with a horse (breaking it to ride), I was accidentally bumped in the right hip, and right thigh by my assistant trainer, who was mounted on the horse. I knew I was going to end up with a pretty sore side, but had no idea I would end up where I am now. As I suspected, the hip and thigh were very sore the following morning, however no signs of bruising were present. I decided to watch it for a few days and see how things went. By the 3rd day following the bumps and bangs, the front of my right thigh hurt like I had pulled a muscle. I had decided that if the pain did not subside in a day or so I would see the doctor. The next day is when I noticed the rather large lump on the front of my upper right thigh. I went immediately to our family physician. At first he suspected a hematoma. He ordered an X-ray, an ultrasound and a battery of blood tests. The ultrasound was inconclusive. An MRI was ordered.
The MRI and radiologist report indicated that the mass in the thigh might be Schwannoma or Malignant Fibrous Histiocytoma and suggested a biopsy be ordered. Our family physician sent me to see a general surgeon to have the mass removed. The surgeon felt fairly confident that the mass was a Schwannoma (which is benign) as he had seen many of them. He scheduled surgery for 2 days later. My husband, my father and I arrived at the hospital prepared for the surgery to remove the mass and the muscle in which the mass was attached. As we sat in the waiting room, the nurse came in and told us the surgery had been canceled and we needed to go see the surgeon. The surgeon canceled the surgery after speaking to a musculoskeletal surgeon who suggested this mass not be messed with until it had been biopsied, and he further explained that if this was Malignant Fibrous Histiocytoma, I should been seen by a physician with considerable experience in this area.
I was referred to a surgeon who is very experienced in the removal and treatment of Malignant Fibrous Histiocytoma. This doctor started things off by suggesting we do a biopsy on this mass and "give it a real name, not a guessed name". He did a fine needle biopsy in his office that day. I got the dreaded phone call 3 days later. It was in fact Malignant Fibrous Histiocytoma. This is a soft tissue sarcoma. Said to be the most common of soft tissue sarcomas. I was referred to an oncologist in my home area to begin chemotherapy treatments. I was put on the MAID program (mesna, doxorubicin, ifosfamide, and dacarbazine). My treatments lasted 5 days, and were done every 3 weeks.
Within 10 days of the first treatment my hair began to fall out. Prior to beginning treatment, I had my hair cut very sort. My hair was waist long. My long hair was donated to the American Cancer Society to make wigs for children. Loosing my hair was not only emotionally painful, but physically painful as well. It felt like someone had been pulling at my hair and would not let go. It gave me a horrible headache. Fortunately, I have not yet suffered any other serious side effects of chemotherapy. I have had very little nausea, no vomiting, I am usually able to eat well. The chemo does leave me pretty tired for a few days following each treatment, but that is about it.
I am somehow managed to keep active with the horses. When I am home, and feeling up to moving around, I go out to the barn to help clean stalls, turn horses out and groom them. I have had to close down the business end, as it was just too physically difficult to work with all the client horses. My leg was in constant pain, and I worried about an injury to that leg with that tumor still in there. I was gone a week out of each month, and tired several days and unable to work. That would have been detrimental to the training and development of the client horses. I did not feel comfortable taking payment for a service I could only 1/2 perform. We did continue with the breeding, but sent any training horses home. I plan to reopen the barn doors after the first of the year. God willing!
I have just had surgery to remove the tumor. The tumor was rather large. It was compared to a football in the operative notes and pathology report the surgeon gave us. The tumor was encapsulated, all the tissue they removed surrounding the tumor showed no signs of cancer cells. The surgeon and my oncologist were most excited about this and the fact that the chemotherapy shrank the tumor and killed off more than 50% of it. I will complete another 3 months of chemotherapy and will follow that up with 6 to 8 weeks of radiation.
A few things have frustrated me though. First of all, getting ANY information as to what Malignant Fibrous Histiocytoma was and how it was treated was darn near impossible. I have managed to come up with a few papers on it, but would like to know much more. I would like to know the long-term survival rates for people who have been diagnosed and treated with Stage 11B Malignant Fibrous Histiocytoma. I would like to know how they were treated, and how they responded to that treatment. Second. I would like to at least talk with others who have been through this same illness. There seems to be millions of support groups for Breast, Prostate, Lung and Cervical cancer, but I can't seem to find another person with the same cancer I have. Don't think I haven't tried. I have contacted just about every group and organization this country has to offer. I have hit a dead end with each and everyone.
I must thank the National Organization of Rare Disorders for providing me with the most detailed information on Malignant Fibrous Histiocytoma. My thanks to the American Cancer Society and the National Cancer Institute for sending me information on Soft Tissue Sarcomas. Lastly, my thanks to my family physician, my musculoskeletal tumor surgeon, and my oncologist for all their diligence and professionalism in helping me get as far as we have gotten in my quest for a cure.
I thank God everyday for each day. I enjoy my family to the fullest and I spend time in the barn, breathing in the horses as my emotional therapy.