By Cancer Hope Network Volunteer, Donna Hussey
It began just a few months after my 45th birthday. My dermatologist was 99% sure that the dry, itchy, discolored patches on my skin were eczema…but it wasn’t. Turns out it was far worse…and hearing the word “cancer” knocked the wind from my sails.
As a nurse, I had always been on the opposite side of the treatment table and was emotionally unprepared for this. A diagnosis of Cutaneous T-cell lymphoma, probably seemed as ‘foreign’ to the local oncologist as it did to me because on my first visit, she pulled a large book from the shelf and told me that we could read about it together. I learned that this disease, a type of non-Hodgkin’s lymphoma was extremely rare…affecting about 1 in every 1500 persons. They referred me to a large hospital in a neighboring state known to have specialists in this rare disease.
Cutaneous t-cell lymphoma or CTCL (as it is commonly referred) has treatment options as far ranging as the symptoms that it presents. During a 10-year period, my treatment went through most of the recommended therapies. Initially, treatment consisted of topical chemotherapy ointments, later progressing to ultra violet treatments in a light box several times each week. After several months of light box therapy, I was left with a bronze glow to my skin. Ironically, a stranger once commented that I looked like I had just returned from a tropical vacation. My emotions would change just as frequently as therapies did, and as time progressed my indolent cancer transformed into something enormous; requiring more aggressive and invasive treatments. I was not exempt from the rigors of chemotherapy, radiation and a stem cell transplant.
And, during the midst of one of my most aggressive treatments, my husband was diagnosed with colon cancer. Only 15 months after being diagnosed, he succumbed to his disease. He had always been the healthy one, and had cared for me during my time of need.
On to my “AHA!” moment…
Following his death, I struggled emotionally with my reason for having survived, despite all the years of being sick. I needed to find purpose, something that I felt passionate about. I needed to have something to dive into. In my quest, I decided to finish writing a book that I had started several years earlier. I knew this would be my moment…my “AHA!” moment!
Turned out, it was. After all of my struggles, I found HOPE. And in the spring of 2013, I discovered the Cancer Hope Network at a cancer survivorship conference and decided to become a volunteer. I found great comfort in knowing that I’m helping to pay it forward and in giving someone hope during a scary, unpredictable time in their life. That same summer, my book, His Mercy Endureth, which chronicles my journey with CTCL and other life changing events, was published. All of these small miracles were finally coming together, and, following my book’s publication, I started receiving phone calls from various groups to speak with others about hope. That is when I knew…helping to give HOPE is my mission.