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My Story | Mary Jo (Joey) T., Kansas, USA

Recurrent endometrial stromal sarcoma (ESS)
Diagnosed January 2002 at 52
Surgery, chemotherapy

My name is Mary Jo (Joey). In May 2000, my primary physician diagnosed a small fibroid tumor. I was a 50-year-old single woman with a uterus the size of a four-month pregnancy. Minor spotting between periods led to a sonogram an my doctor told me it looked like a fibroid tumor and asked if I wanted it removed. She was busy writing notes and didn't seem concerned, so I told her if it wasn't causing problems, to just leave it alone. That was the start of the tumor.

In January 2002, I started having pain on my lower left side - enough pain that I went to my doctor. She ordered a sonogram, and said I had a lot of fibroid tumors and needed surgery, and referred me to a gynecologist for a hysterectomy. She was in for a rude awakening. When she opened me up on the operating table, the huge growth in my uterus told her something was wrong. So she removed my uterus and ovaries, and biopsies were performed while I was on the operating table. I was diagnosed with endometrial stromal sarcoma (ESS) and, luckily, nothing was found in the surrounding tissue.

The oncologist told me that ESS is a slow growing, low-grade cancer. While it didn't warrant any treatment at once, there was a 50-50 chance that it would return within the next eight to ten years. In January 2003, my abdomen started swelling, and I was so uncomfortable that I went to my primary physician to have it checked out. She had an abdominal x-ray done, along with blood work. No infection was found and I was referred to a surgeon.

The surgeon ordered a CT (computed tomography) scan that revealed no masses, but laparoscopic surgery showed that ESS was growing in the omentum, the fatty layer of the abdomen. I was drained of over a gallon of fluid. The fatty layer was "cakey," according to the doctor. I was then referred back to my oncologist from the previous year. He advised chemotherapy treatment as soon as possible, and he told me that I would get either dramatically better - or dramatically worse.

The first treatment went well. I was somewhat nauseous, but mainly was weak. I was anemic from blood loss after surgery, and I remained somewhat anemic throughout  following treatments. I started losing a little hair after two weeks.

I have had five of six treatments now. I've lost about 60-70 percent of my hair, but it's growing back already. I have had only minor nausea with the help of anti-nausea medication. I usually have only two days of feeling pretty yucky - the rest of the time is spent keeping something in my stomach every few hours. I am a heavy woman and have lost 37 pounds so far, but the loss has been at a normal rate.

I feel fortunate in that I have been able to work through all this. My family and friends have been very supportive. I have tons of inner strength, a strong will, and a strong faith also. This has kept me going. It has definitely been a life-altering experience. I had a CT scan done after the fourth treatment and the tumors are getting smaller. The oncologist said the sarcoma will come back and I will need chemo again. It will be on-again, off-again, and I will get weaker.

I am taking vitamins, walking, and once I get more strength, will start exercising more vigorously. I plan to be more physically fit for the next round. I have learned to take life a day at a time and that all we have is the present. I'm not afraid of dying, but am not crazy about dying of cancer.

Every day is beautiful to me. I love watching my gardens grow, visiting with family members, reading, art, and shopping (can't keep me from shopping - lol). I am off work on disability right now, enjoying lots of little projects around the house - life is good.

May 2004

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