Welcome to My Roswell Park Blogs. My story started 32 years ago when I was admitted to South Buffalo Mercy with “something” blocking my stomach. After a month of tests and a hemoglobin count of 3 (yes three) my pediatrician shipped me off to Roswell Park Cancer Institute on December 1, 1977 where Iunderwent the same medical tests in less than 10 days. It wasn’t until my surgeons performed sub-total resection on December 12, that they realized what they were dealing with: a massive leiomayosarcoma formed on either side of my stomach, poking holes through it where it was growing on the inside and metastisizing on the outside of my transverse colon. Never having diagnosed a child with this exclusively male, geriatric tumor before, the course of treatment was experimental:after the surgery, followed 6 weeks of cobalt radiation and nine months of weekly chemotherapy alternating with cytoxan, vincristine, and adriamycin. My doctors agreed that if I survived the treatment, I might have a chance for survival, but they warned my parents not to get their hopes up.
Treatment was rough, wiping out my immune system and causing the usual hair loss, vomiting, sores in my mouth. In those days, having no immune system meant going into isolation until the white blood cells returned. I didn’t understand that a sore throat could turn into something deadly, so although I was outwardly compliant, inwardly I was kicking and screaming through the entire nine months of treatment. My early teen years were entrenched in hospital visits, blood draws, and CT Scans when my friends were going to movies, the closest shopping mall and roller skating. Along with a number of friends whom I met at Roswell, I struggled through high school with minor medical setbacks until my senior year when my health improved significantly.
Attending college at Fredonia State turned my life around and showed me there was a normal life waiting for me and it was up to me to get out there and live it. Living away from home gave me time, distance, and clarity, and a sense of purpose outside of Roswell. After graduating, I returned to Buffalo to earn a master’s degree and marry a long time friend who had claimed to be a childhood cancer survivor and therefore understanding of my medical hurdles and the fact that treatment had rendered me sterile and unable to have children.
After being married only a month, I recognized the familiar symptoms of a second occurrence of cancer. Nearly seven months later in March 1989, a second surgery revealed the cancer had returned in all three lobes of my liver and gall bladder and before my first wedding anniversary, metastasized to my right kidney. Due to the aggressive nature of this cancer, my husband was told that the longest survivor without treatment lasted six to twelve weeks. With treatment, I learned the longestsurvivor lasted two years. Much to my medical team’s disappointment, when my husband and I learned the only experimental treatment available would kill me, I declined medical treatment and turned to my faith. With Mike, being my greatest encourager and guide, we prayed, changed our diet and lifestyle, and got on our faces and prayed more for understanding and wisdom to make the right decisions. Kudos to Mike for pointing me to scripture, being an example of faithfulness, and shielding me from people who undermined my faith. Not only did I outlive the doctors’ expectations, but miraculously, nearly two years later Mike and I discovered Iwas pregnant.
After giving birth to a beautiful healthy daughter, Erica, in the late summer of 1991, we were told I wouldn’t be able to conceive again. However, in the summer of 1993, we brought Daniel into the world on July 4th. A CT scan that November failed to show any disease in my liver, although an MRI revealed no tumor on my kidney and necrotic (dead!) tumors throughout my liver. Something had cut off the blood supply to the tumors - they had withered and died.
I walked in excellent health until 2002 when the tumors grew again in my liver and quickly spread to my abdomen. Again, turning to prayer first, I decided to take a new drug, Gleevec which was chromosome specific and hopefully, would target only the tumors and dismantle them. It arrested all of the tumors for two years and held them stable. But, twenty-six months of treatment began to take its toll on my body. It was time to quit taking the medicine that was making my body toxic and modified my diet, by beginning a holistic regime. Within six weeks was told the tumors in my abdomen were necrotic, along with a new tumor in my lung and the tumors in my liver were dying. A year later in 2006 the tumors in my abdomen were completely gone as was the lung cancer. A recent CT scan shows only a dying 7 cm liver tumor.
It is only by the grace of God, that I’ve been living out this miracle one day at a time for the last 32 years. I am eternally grateful to my family, friends, ministers, and church family who have earnestly prayed and believed for my healing.
Jeanne W.