In May 2009, while visiting family in Portland, Oregon, I underwent abdominal surgery, was diagnosed with stage II epithelial ovarian cancer and had a complete hysterectomy. The tumor on my right ovary was 13 centimeters, with a smaller tumor on my left fallopian tube.
Let me back up a little.
Prior to a planned trip to Oregon with my husband to visit our son and his family who lived in Portland, I had had a month of tests at home in Maine. These tests included a transvaginal ultrasound, CT scan and CA-125 blood test, which was 164. All indicated that something was amiss, but I wasn’t any closer to a referral to a gynecologic oncologist (gyn onc), and my primary physician, whom I had called immediately after I noticed vaginal bleeding, still did not want to see me.
I had an exam for endometrial cancer, which was negative. By this time I had noticed a lump in my abdomen when I was lying down. I called my doctor son in Oregon and the previously-planned two-month stay to see him and his family got moved up. I left Maine that night; saw a gyn onc in Oregon the next day; and had surgery the following afternoon.
My initial symptoms included a sudden appearance of a vaginal discharge, then light bleeding within a week. I was 65, nine years beyond menopause. I did not have bloating, feelings of fullness, fatigue, frequent urination, pain or other typical symptoms of ovarian cancer. Additionally, I led an active lifestyle that included calisthenics, weights, biking, roller blading, downhill skiing, and walking with hand weights.
I had no typical risk factors like history of breast or colon cancer. I had taken the birth control pill; had both of my children by age 25; breast fed them; and had a tubal ligation at age 34 — so I would have thought I was protected against ovarian cancer. I did take hormone replacement therapy for five-and-one-half years, and at that time, this was thought to be protective.
Though I had no risk factors predisposing me to developing ovarian cancer, I do, unfortunately, have a family history of cancer. My paternal grandfather died of multiple myeloma at age 72; my father was diagnosed and died of acute leukemia at age 65. My own ovarian cancer was diagnosed at age 65, and my sister was diagnosed two years later, at age 65, with stage IV mouth cancer. She died at 66. I am currently 5 3/4 years out from initial surgery and diagnosis. I am BRCA negative.
After surgery I had IV chemotherapy with carboplatin and taxol. I lost every hair on my body and made it through five of the six planned sessions of chemo. Sessions four and five were administered back in Maine with a new gyn onc there, but I did not do the sixth session, as the neurologic effects for me included walking into walls, dropping things, an inability to hang on to things, loss of manual dexterity and extreme foot, thigh, calf and hand cramps. Food and water tasted awful, but I made it through. I finished chemo in September 2009. I took up running again after a hiatus of many years, but gave up rollerblading after passing out once.
CA-125 blood tests showed my “numbers” beginning to rise sometime after April 2010 — up seven points by July, another seven points by October 2010. In January 2011, a CT scan revealed an enlarged lymph node high in my abdomen.
I had my second surgery two months later, followed by chemotherapy with carboplatin and gemcitabine. I made it through. There was no skiing for me that winter and my beautiful new hair fell out again. A CT scan, taken a week after finishing the chemo, was clean. I requested no CA-125 blood test until the following January.
In February 2013, while out running, I fell on ice, broke my right wrist, and was in one cast or another for the next nine weeks.
In April 2013, my husband and I journeyed to Oregon where we found a new house. We returned to Maine and sold our house in a week-and-a-half. At the same time, a routine CA-125 test indicated that my cancer was back again.
This time the single lymph node tumor was located between my aorta and vena cava. My gyn onc declared it inoperable. My son in Oregon found me two clinical trials for which I might qualify. One turned me down, but Loyola Medical Center in Maywood, Illinois said they would take me if they could find a surgeon to do the surgery.
Two months later, according to the head of the liver transplant department at Loyola University Medical Center, we made history (on a scale of one to ten, my surgery was an eleven!). After a few days in the hospital, followed by another week of recovery in Illinois at our other son’s house (during which time I got bitten by a deer tick; saw the surgeon; and got antibiotics for Lyme disease), and I received clearance to drive on to Oregon.
It is hard to put into words, but I felt as if a part of me must have thought I would die during surgery. I did not know who I was anymore, where “home” was, or what my purpose would now be. Our belongings were in storage and we were midway between our old home in Maine and our soon-to-be home in Oregon. During the time spent in the hospital in Illinois, I talked with both a priest and a counselor, asking them to help me see how to move on. They, and my medical team, all listened and that was the most important thing to me.
After I recovered from surgery and the move to Oregon, I had five weeks of daily abdominal radiation. In December 2013, I flew back to Illinois to have the preliminary tests to enter the clinical trial. A vaccine was made from my tumor lysate cells, which were taken at surgery, and my t-cells taken twice by apheresis. This vaccine was injected into me approximately every two weeks for nine sessions total, finishing in July 2014. In September, back at Loyola, my CT scan was clear and my CA-125 was 13.
A month later (October 2014) my CA-125 was 21. And this is how I, and others whose cancer has recurred, live. There are some women who entered this clinical trial at its onset in 2007 who are cancer-free.
I am trying to join them.
Editor’s Note: Sherry and her husband relocated from the coast of Maine in 2013 to Portland, Oregon, to be near their son Eric and his family. She is a writer and poet, former adult education instructor, teaching others how to go about publishing their writings. Sherry loves the beach and the outdoors, and enjoys the Oregon coast. Active pursuits include running, kayaking, biking, walking and hiking. She also enjoys reading, writing poetry, drawing and being a Nana. Visit her website www.sherryhanson.com to learn more about her work and professional awards as a writer, poet and teacher.