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My Personal Journey With The Cutaneous Lymphoma Foundation

A story by Erica, caregiver to Jon

Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2010 newsletter.

It was Christmas 2009 when the call came through.

For over a year and a half, we had known something was wrong. Gradually intermittent facial flushing morphed into total body ruddiness and the itching became debilitating. Going to a restaurant or movie theatre became uncomfortable. Jon constantly scratched due to incessant itching on his stomach, chest, arms, legs, feet and hands. Our brief evenings out would end with him rushing home to soak in the tub...offering a sweet but brief relief. Palliative efforts to reduce the constant total body itch so he could fall asleep and stay asleep became a nightly ordeal. Our bathroom and bedroom was littered with anti-itch creams, ointments, lotions, prescribed potions, and half-used boxes of mineral and oatmeal baths. All forms of over-the-counter and prescription anti-histamines and anti- inflammatory medications pack one of our kitchen cabinets and his bedside bureau. Jon could not sleep, and neither could I. When he finally did, his often vigorous sleep-scratching would rouse me.

My planning to rejoin the paid workforce in the fall was halted. Jon was getting worse, and, because of this, I was hesitant to make new commitments and generally began disengaging from many of my extracurricular activities. Folks commented on Jon’s sunburn. We “joked” that it was a ski tan. Did some people think he was an alcoholic?

During fall and winter 2009, I focused on maintaining a sense of normalcy for our kids and covered social and “kid duties” so Jon could rest. I researched all variations of his symptoms and T-cell lymphoma always came up. Sometimes the most obvious is the answer. But, his presentations didn’t match the photographic examples of Sézary syndrome, a form of cutaneous T-cell lymphoma. The pictures showed only the later and more severe stages of the disease, for which he now is a classic example. Also, his dermatologist had ruled T-cell lymphoma out with a nasty prednisone foray over the spring. This misguided medical exploratory attempt at determining what “it” was and was not led to a trip to the emergency room and the immediate cancellation of our family’s summer vacation.

The diagnosis of possible cutaneous T-cell lymphoma and/or Sézary syndrome was an awful shock, but also a relief. We were scared, but “it” had a name. A diagnosis meant that we could now get treatment. With a background in research and academia, I did what I do instinctively...I researched.

By New Year’s 2010, I found the Cutaneous Lymphoma Foundation online. Judy Jones, the organization’s Co-Founder and President, called immediately to offer Jon guidance. She and the Foundation offered us the most professional and current information. Armed with this and the help of their website and listserv, we were no longer isolated and alone. Jon and I started navigating our way through the medical system. The fog began to lift.

Although Jon has one of the best doctors in the country, he is still fighting for a remission. As I write, he has started his third treatment protocol. The earlier immunotherapy and other typical medications prescribed for Sézary patients have not worked. The fissures in his feet are so debilitating that he has tried using super glue to hold the skin together (without any luck).

Jon and I try to prepare our lives and children for the unknown and unknowable. His hands and feet are cracked so painfully that he often hobbles. This spring Jon despaired when he had to admit to our pre-teen son that they could no longer play baseball and catch as his skin was too fragile and hurt. Jon can’t ride a bike with our little daughter either. But, he still can play board games. We know he is lucky as he can still work. Jon’s supervisors and colleagues know about his condition and have been amazingly supportive. He is fortunate in that his work involves his intellect and his continued ability to maintain control of this part of his world sustains him.

The Cutaneous Lymphoma Foundation was and continues to be invaluable. It helped me craft a roadmap. As with many caregivers, with the Foundation’s information as a guide, I could sort through and assess resources, specialists and treatment protocols. The Foundation’s fact sheets were useful for explaining the disease and various treatments to family members. It’s been a bumpy and hard ride, and it will get much, much harder. But, Jon and I are comforted in belonging to a larger community. We are grateful for and appreciate the Cutaneous Lymphoma Foundation for their ongoing support and for linking us to others in similar situations. We are comforted in the knowledge that staff and volunteers work doggedly to structure an organized approach to finding a cure. We are no longer alone.

A story by Erica, caregiver to Jon

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