The word survivorship gains new meaning after hearing “You Have Cancer.” I had survived many things in the 31 years before those words….being thrown from a horse, an automobile accident, toxemia and the premature delivery of both daughters, and even a pulmonary embolism. Nothing could have prepared me for the decade that would follow those three fateful words. It was in the days afterwards that fear, hopelessness, and helplessness became all consuming. I cascaded from planning for another baby to preparing for my funeral.
My diagnosis began with a simple surgery for a blockage thought to be adhesions, but instead became what has been a ten year journey of surviving with stage IV colon cancer. We learned after my surgery that the blockage was caused by a tumor – a tumor that had already spread and was in my liver. Cancer, malignant, spread, and even liver were foreign words and the main point we came away with was that there was only one treatment for my situation and it had been around for 45 years. The surgeon and oncologist thought that chemo would provide no additional time and that it would cause many terrible side effects. I was guided to spend the time I had left, thought to be about six months, enjoying family and getting my affairs into order. A second opinion never occurred to us. I lost sight of the fact that I was very much alive and mourned the fact that I would not be here to watch my children grow or spend rocking chair days on the front porch with my husband. It was in this desperation that I discovered the ACOR list-serv and learned the importance of support. A message from one of the members, Shelly Weiler, changed the course of my fate. He offered something that no one else did….hope from a voice that had been where I now stood.
I did as he suggested and I started chemo with the one and only drug available. I have survived with this disease because of the benefits of research. I received each new treatment as it was approved and learned to live with my cancer as a chronic disease. My luck changed, though, when no new drugs were offered and all old ones had been exhausted. I clung to the hope offered through two clinical trials. Still, my liver tumors grew quickly and uncontrollably. My tummy began to get huge, my energy faltered, the color of my skin changed, and the fabulous oncologist who had been a pillar of support throughout my battle sat down and explained that there was nothing more he could do. I traveled to a conference to meet with other survivors and wanted to find hope but was again faced with no new options. I returned home and looked into hospice, writing to the friends I had met through the years that the treatment trail had ended for me. I went to another oncologist who very calmly and quietly said “There are no more treatments available for you and it is time for you to accept that you are terminal.” Sobering, thought provoking words.
The next day I answered a phone call from Gordon Gwosdow, another stage IV friend. He gave me a phone number and told me that his physician and a new treatment he was performing would save my life. I made the call hesitantly but in the process learned the importance of other opinions, support, and advocacy. The phone call brought a new treatment option. I armed myself with information and took it back to this new oncologist of mine with not only newfound hope but a gift that I had made especially for him. I handed him the information on this cutting edge treatment and waited expectantly for his elation to match mine. It didn’t. Instead, he said that he didn’t think the treatment would work, but what did I have to lose? I took the gift from my purse, a cap that on the front said “I am terminal” and on the back “so are you.” I told him I realized that the chances for my survival were slim and that I had planned my funeral and accepted long ago that “I am terminal.” I also told him that I had beaten many odds since my diagnosis and that I didn’t want to die without hope. I went on to explain that there were milestones I planned to see and dreams that I still wanted to fulfill and that if I were to die I wanted to do so knowing that every stone had been turned and every opportunity embraced. That cap still hangs on his wall…..and together we are still turning treatment stones.
I received Sir-spheres for my liver tumors three months later, again defying the odds. The treatment stopped the growth of the liver tumors and over the next six months I experienced not only shrinkage, but necrosis of those tumors. I was able to step back from the edge of death and continue stepping from one treatment stone to the next, receiving systemic chemo for some lesions that appeared in my lungs and spine. I have since had gamma knife, cyberknife, intratumoral chemo, intrathecal chemo, surgeries, vertebroplasty, and radiation.
I became an active advocate for C3, NCCS, ACS and I learned about LiveStrong and was chosen as a delegate for the Inaugural LiveStrong Summit. My personal action plan brought together my two passions: advocacy and support and YES (www.beatlivertumors.org) was born. Through our services, survivors and caregivers learn that liver mets are not a death sentence, that there are options, and that there is always hope and information available. We just held our first Liver Symposium and brought together survivors and their loved ones, medical professionals, as well as other organizations from around the country so that resources can be shared and distributed. I’ve become a survivor in spite of the fact that I have tumors here, there, and everywhere. While my doctors say that I am dying from cancer I know that I am living fully in spite of it. I have done things that I would never have attempted without cancer (including sky diving and scuba diving), lobbying, speaking, meeting new people and telling a very private story in extremely public places. More than anything, though, I’ve spent ten very wide awake years with my family making miniscule moments into miraculous milestones. We have ridden horseback under a moonlit sky, taken pictures in bluebonnets, and enjoyed the blessing of each and every day. I have witnessed both daughters graduate and begin college, spent years and anniversaries with Ronnie – including those rocking chair days on the front porch, and celebrations that were not meant to be (or were they?). I have been touched by others as their lives have touched mine and my understanding of hope has blossomed. Hope is the closest thing to a magic wand.
Survivorship, for me, means reaching limits you thought beyond your capabilities
Bringing dreams to fruition
Finding hope in the hopeless
Believing the improbable is possible
And to always, whether under the perils of pressure, or in the midst of peace….