Warriors Ay We - Fighting Cancer
A cancer diagnosis can really shake you up, but a terminal cancer diagnosis changes everything. I am the wife of a courageous Cancer Warrior, and here is his story.
It all started in 2013 as an itchy rash. The doctor blamed it on stress, given the recent passing of Tom's father, but months went by and the rash remained. From 2014 to 2016, Tom saw several doctors and they each had a different explanation. Allergies were suggested as the culprit, but allergy testing came back negative and attempts to eliminate scented laundry detergent, chocolate, coffee, dairy, and wheat had no effect. Eczema was then named as the cause, but Tom knew that what he was experiencing was not eczema.
Fast forward to December 2016 when Tom moved to America. By this time, the rash covered nearly his entire body and the itching kept him (and me) up all night. Tom was hopeful that the doctors here could offer not only an explanation, but a solution to the problem. Months of medical appointments and testing yielded a diagnosis of plaque psoriasis. The treatment regimen for psoriasis seemed to alleviate the symptoms briefly, but then the redness and itch came back with a vengeance. Luckily, Tom's physician kept looking for an answer. What she found changed all of our lives forever.
The diagnosis...Stage IV cutaneous t-cell lymphoma, also known as SEZARY SYNDROME.
The prognosis...four years.
Sezary Syndrome (SS) is a rare, leukemic form of CTCL. We joke that Tom is literally 1 in 10,000,000. It is not uncommon for this cancer to be misdiagnosed for years, both because it's relatively unheard of and because the early symptoms mimic so many other common medical problems. The symptoms vary by individual, but in Tom's case include a red rash over more than 80 percent of his body, thick red plaques (his "turtle shell"), malignant lymphocytes in his blood, involvement of lymph nodes, skin swelling, thickening and cracking of his palms and soles of his feet, and difficulty getting his body temperature regulated.
Finding a doctor who is familiar with Sezary Syndrome is difficult. We were fortunate to receive a referral to DUKE UNIVERSITY, where fantastic doctors study and treat this disease.
In addition to providing world class medical care, Duke offers cancer support services including counseling, pet therapy, physical rehabilitation, and palliative care for Duke cancer patients and their families. They treat the whole individual, not just the cancer, and all support services are provided to patients free of charge.
The Spring for Support 5k raises funds for cancer support services at Duke. I invite you to support our team, WARRIORS AY WE, as we walk for this important cause. Your donation will help patients with all types of cancer, including Sezary Syndrome.
We are grateful for your support!
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