"I have established the Lowcountry Women with Wings Fund to provide support to other women with ovarian and other gynecologic cancers who have questions and need information on what to expect, who need other patients to
talk to and, most importantly, to talk about this disease."

Hello, my name is Terry Scharstein, and I am a person with ovarian cancer. Here is my story.

I was born on July 31, 1953 and raised in Columbia, South Carolina. I had a happy, healthy childhood. In 1975 after graduating from USC, I married my soul mate and moved to Charleston. I gave birth to my two amazing offspring, Melinda and Harry. I had a demanding and satisfying career as a public school teacher. I loved my family and I loved my life.

On January 13, 1999 my life changed forever. My beloved husband died suddenly and unexpectedly from a massive heart attack. It took me a very long time to reinvent my life and my philosophy for living. I now accept that change is inevitable and I can overcome anything if I simply take it one day at a time. No looking back and no regrets.

Four and a half years ago soon after my fiftieth birthday I decided to have a hysterectomy and bladder repair. I had never been sick and I had never had surgery of any kind. My only experience with hospitals was for the births of my two children.

I had been bothered with nagging lower back pain, which my family doctor had attributed to a prolapsed uterus and being on my feet all day. I had always been healthy - never missed my yearly physicals, pap smears and mammograms. I never took any medications except for birth control and anti-depressants after my husband’s death.

I consulted an OBGYN in November 2003 about the prolapsed uterus. He agreed with my regular doctor about fixing my problem with a hysterectomy. He concluded that since I was in excellent health otherwise, I might want to postpone my surgery until the following summer vacation. I decided to have the surgery in early February instead because I had plenty of sick days and wanted to get it over with.  I visited a urologist in December for an exam and consult for a bladder repair to be done at the same time as the hysterectomy. Again, I was told that I was in excellent health and a good candidate for the surgery.

In mid January I revisited the OBGYN for a pre-operative re-check. He noticed the uterus had prolapsed more, but was not concerned. I was not overly apprehensive or nervous. I jokingly referred to the upcoming surgery as my "’50 year tune-up".

On February 3, 2004 I awoke from surgery to hear my OBGYN tell me that "‘things" did not go the way we had planned. He said that as soon as he opened me up, he saw that my abdominal cavity was full of cancer. He told me every curse word he used as he quickly called the nearest gynecologic oncologist. Luckily for me, the oncologist left an office full of patients to come right then to perform the cancer debulking surgery. I was in surgery for almost 6 hours. The diagnosis was Stage IIIC ovarian cancer. MY OBGYN told me afterwards that he could not believe he tried to get me to put off having the surgery, and how lucky I was that I had chosen not to postpone it.

Looking back on those first days I was totally numb. I had completely lost control of my life much like when my husband died. There was no anger, just shock and confusion. Not only did I have to make a difficult physical and emotional recovery, but I was faced with suddenly losing my identity and my life as I became a ‘patient’. My original plan was to spend one or two days in the hospital and then home to heal. All of a sudden strangers were discussing drugs and treatment plans and I was not even ready to wrap my brain around the situation, much less make decisions about my options. Everything was so clinical.

I went on to do six rounds of chemotherapy while still teaching fulltime and had a complete remission in mid-June 2004. By March 2005, my CA125 tumor marker had begun to rise and I began to have an aching sensation in my lower abdomen and pelvic areas. By May, I was in constant pain and in need of pain medication full time. Chemo began again in early July. My oncologist warned me about returning to the classroom because the second time around the treatments would be harder to take. He was right. I had to give up teaching in mid September— a very difficult decision for me. Again, my life changed drastically and I had to deal with depression along with the pain drugs. I was on chemo for 14 months nonstop coping with the terrible side effects. Chemotherapy became my life.

I have since had over 3 dozen chemotherapy treatments, and  my body has begun to fail me in ways I never even knew to anticipate. The chemo drugs have permanently affected my eye sight and my hearing. I also now have osteoporosis and type 2 diabetes and was recently diagnosed with acute myeloid leukemia. I have to use a walker to get around.

I know I am lucky to be alive. I still take one day at a time, trying to recognize the face looking back at me from the mirror. I believe that my job now is to show up, to preserve my dignity and sense of humor as I write my rule book for how I want to live my remaining days.

When I was diagnosed, there were no programs/resource centers available specifically for gynecologic or ovarian cancers.

I have established the Lowcountry Women with Wings program to provide support to other women with ovarian and other gynecologic cancers who have questions and need information on what to expect, who need other patients to talk to and, most importantly, to talk about this disease. I want to convince women to listen to their bodies and if something doesn’t feel right or is unusual to go to their doctor and discuss it.

If I had been diagnosed earlier I would have had a fighting chance. If I had talked to my doctor about the lower back pain and asked to have it checked out more thoroughly things might have been different for me. The bottom line is to pay attention to what your body is telling you. The CA125 can result in false positive results but even then if your number is high other diagnostic tools can be used.

Terry passed away on August 27, 2008.

Don’t brush it aside. Pay attention.
Your life may depend upon it.