It was Christmas 2009 when the call came through.
For more than 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 because of 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 are 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 antihistamines 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. However, his presentations did not match the photographic examples of Sezary 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 Sezary 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 cofounder 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 Web site 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 Sezary patients have not worked.
Jon and I try to prepare our lives and children for the unknown and unknowable. This spring, Jon despaired when he had to admit to our preteen son that they could no longer play baseball and catch as his skin was too fragile and hurt. Jon cannot play outside with our little daughter either. Lately, Jon's hands and feet have cracked so painfully that he cannot use a can opener, and his confident stride is now a slow shuffle. The fissures in his feet are so debilitating that he even tried, unsuccessfully, using super glue to hold the skin together. But Jon still can play board games, and we know he is lucky because he can still work. Jon's supervisors and colleagues know about his condition and have been amazingly supportive. Jon is fortunate that his work involves his intellect-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 has 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.
CALL FOR AUTHORS AND REVIEWERS
Welcome to the Journal of the Dermatology Nurses' Association (JDNA), the new official journal of the Dermatology Nurses' Association (DNA).
Authors needed: DNA members, who comprise a wide variety of healthcare professionals (medical assistants, LPNs, RNs, NPs, and PAs), and others who are dedicated to patients with dermatologic needs, are encouraged to participate by contributing articles related to the practice of dermatology and dermatologic surgery. The JDNA is interested in receiving columns, case studies, and articles on the suggested topics below, although we consider all submissions.
Editorial Board members and the Editor mentor new authors, and work with DNA members who might wish to develop a lecture, presentation, or paper into a JDNA article. Experienced authors are also invited to contact the Editor, as they develop potential topics and formats for submissions. Please visit the JDNA Editorial Manager site at http://www.editorialmanager.com/jdna/ for more information or to submit a manuscript, and firstname.lastname@example.org, to contact the Editor directly.
- Pediatric dermatologic issues
- Geriatric dermatologic issues or other special populations
- Cutaneous manifestations of chronic diseases
- Quality of life with chronic dermatologic disorders
- Dermatologic emergencies
- Evidence-based practice
- Nursing research
- New therapies
- Drugs and pharmacology
- Patient safety issues
- Patient and professional education
- Patient perspectives and advocacy
- Management issues
- Ethical and legal issues
- History of dermatology
- History of dermatology nursing
- Informatics and dermatology
- Book and media reviews
Reviewers needed: The Journal of the Dermatology Nurses' Association is a peer-reviewed journal. The JDNA's panel of reviewers assists the Editors and authors as manuscripts move through the review process. If you are interested in serving as a reviewer, please contact the Editors at email@example.com.
Let's work together to make the JDNA the best it can be.