As the caregiver to my 63 year-old mother, Tami Lopez, who was diagnosed in 2009 with cutaneous T-cell lymphoma (CTCL), I was informed of the Cutaneous Lymphoma Foundation during mom’s initial oncology consultation. The Foundation’s website has been a lifeline for my family through our journey.
Tami’s battle with CTCL began around three years ago and is not unlike many others fighting this disease. I remember her having these "flare ups" that included rashes, terrible itching, pain, and swelling. She was biopsied, diagnosed with eczema, and treated with steroids.
Mom experienced many of these episodes, each a little worse than the one before. By summer 2009, we knew that something more was going on and began seeking the advice of other doctors...internists, allergists and other dermatologists. Eventually more biopsies were performed, and none of us were prepared for the result. Two days before Christmas, after 15 years in remission from breast cancer, mom learned she had cutaneous T-cell lymphoma.
A variety of treatments began right away, which were challenging and draining on mom; however, we were optimistic. Within a month of the first PET scan, we learned that the cancer was now in her blood. A second PET scan showed more activity in the lymph nodes, and a decision was made to switch treatment to chemotherapy. Tami recently completed her seventh infusion and is beginning to see some improvement in her blood work.
Because the Cutaneous Lymphoma Foundation website educated me on the available treatment options, I went into each oncology appointment equipped with questions to ensure the next course of treatment was right for my mother.
Being the caregiver to a loved one stricken by a rare disease is so challenging. Watching my beautiful mom suffer – feeling so helpless, so afraid of hurting her more – is devastating.
So, I have worked hard to do everything I can do to find resources and support to ensure that her quality of life is the best it can be. One way I have done that is to make contact with the CTCL-MF Listserv – doing this marked a turning point in the quality of care my mother received. I contacted the listserv with questions regarding mom’s fragile skin and how best to treat her. The responses to my questions were immediate, so helpful and overwhelming. I was not alone. There were many others willing to help, to share their lives and personal journeys with me, to share what techniques gave their loved ones relief. I gained renewed strength, energy, and, most importantly, hope.
At the suggestion of other caregivers on the listserv, I engaged a wound care specialist who treated mom so gently and with such compassion. She received the level of care she deserved and was comfortable for the first time in months. It truly was a turning point in the quality of mom’s life.
It means so much to have a place like the Cutaneous Lymphoma Foundation to turn for information, advice, compassion, and understanding. I thank the Foundation so much for its dedication to patients like my mom and caregivers like me who rely on it as a daily lifeline.
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