It was at the fairly young age of 31 that my journey with cutaneous T-cell lymphoma (CTCL) began. As so many CTCL patients first do, I began with seeing several dermatologists over the course of a year. I saw quite a few; however, I was eventually fortunate enough to have been referred to Dr. Eric Vonderheid, one of the few specialists treating cutaneous lymphoma at the time. It was 1991, and I was diagnosed with mycosis fungoides. With all that I was involved in at that time in my life – the hopes, dreams and life goals I was pursuing – this diagnosis stopped me cold. I mean – I was just 31 – how could I have cancer?
At first, this diagnosis was just devastating. So many tough emotions. It took a tremendous physical, mental and emotional toll on me.
But, eventually, I wanted – and needed – to overcome the feelings of hopelessness I had because, despite this diagnosis, I wanted to live the best life I could. So, being a problem-solver, I began to look at my cancer diagnosis in that light: How do I now begin to solve this problem?
Under Dr. Vonderheid’s watchful eye, I began PUVA treatment immediately. This treatment, along with many others, seemed to keep my CTCL under control for quite a few years. The itching, of course, was challenging at times, but different topical treatments provided some relief.
In 1997, the disease turned aggressive, and I found myself in stage IV, looking at a bone marrow transplant as my only option. After a year of struggling, I began the preparatory process for the transplant by taking medications and entering into three months of radiation therapy to get the tumors under control. The summer of 1998 was spent traveling to downtown Philadelphia every day for radiation treatment that left me hairless. I learned that my head is quite a nice round shape!
Fortunately for me, the three months of steady radiation and medications did the trick, and by my 40th birthday in September, the CTCL was under control once again. To celebrate, I completed the Philadelphia Distance Run (a 1/2 marathon - 13.1 miles) and threw myself a 40th birthday party – bald head and all.
Feeling very lucky at this point, I responded to a Team in Training (“TNT”) flyer as I was thinking about participating in my first triathlon. For those of you who may not be familiar with TNT, it’s a program offered by The Leukemia & Lymphoma Society that provides hands-on training for a marathon, half-marathon, triathlon, hiking event or 100 mile bike ride. The pull for me was very strong to give something back so I jumped into the TNT world by training and finishing the Chicago Triathlon in the summer of 2001 raising over $5,000 for leukemia and lymphoma research. One of my proudest accomplishments was finishing the Pacific Crest 1/2 Ironman Triathlon In 2004 – finishing in 8.5 hours and not last! Not bad for a 45 year-old!
I found the Cutaneous Lymphoma Foundation in 2007 when my new doctor, Stuart Lessin, who serves on the Board of Directors of the Foundation, suggested that I might be interested in becoming involved. It was an honor to be asked to join the Foundation Board in early 2008. And, I now serve as the Foundation's Management Consultant for Programs and Services, which is so rewarding as I am able to work with and help patients every day -- I absolutely love my work! I am so thrilled to be working so closely with this amazing Foundation --- one that does so much for CTCL patients as well as supports scientific research to find new treatments and, one day, a cure for this disease.
The joy of living a full and wonderful life – in spite of being treated for CTCL – keeps me going.
For me, through my work with the Cutaneous Lymphoma Foundation, it is so wonderful to connect with other CTCL patients and share my story so that they may find hope and inspiration from someone who has done well for so long. I love being involved with the Foundation and plan to continue supporting their efforts to enrich the lives of people living with CTCL.
My message to every person reading this – whether you are a patient, caregiver, physician, or anyone interested in our mission – is this: First, thank you for being a part of the Cutaneous Lymphoma Foundation community. And, second, I encourage you to learn more about and become involved in all that we are doing to improve the lives of people affected by cutaneous lymphoma. As is the case for me, getting involved and helping others is extraordinarily empowering and life-enriching. It gives you something to think about each day beyond the symptoms you may be experiencing, beyond the day-to-day frustrations that you are coping with. It helps you positively impact the lives of others while, at the same time, positively impacting your own.
You can learn more about Susan and her inspirational story at www.letslivetoday.com. Susan has launched a new venture, Let’s Live, dedicated to inspiring and empowering people to explore life beyond cancer
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.