New York, NY
Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2012 newsletter.
My journey began in the fall of 2003 when my mother experienced an “itching attack.” She was not an alarmist by nature, but the intense itching compelled her to call me at work and say “I’ve never had such an itching attack in my life!” We concluded that the culprit was laundry detergent. She changed to one specifically formulated for sensitive skin, but the itching continued. My mother found herself scratching until she bled. Her whole body itched day and night. We decided it might be something she was eating, but my mother had a varied diet, and we couldn’t pinpoint the possible culprit. It began to take a toll on her emotionally and physically. I too was concerned and perplexed as to the source of this intense itching.
It would take another two and a half years to figure out the cause of her torment. By then we had visited several prominent New York City dermatologists, allergists, internists and even a plastic surgeon to remove a flat lesion on her thigh. One allergist called and cheerfully informed her that “she wasn’t crazy” and she had Grover’s Disease. She had what?!? Neither one of us nor my physician colleagues had ever heard of such a thing. I researched Grover’s and wasn’t convinced. After this long and frustrating period of no answers, I decided to take the matter into my own hands. I scheduled a visit for her to come to my laboratory at Lenox Hill Hospital, where I had spent many years as a scientist diagnosing leukemias and lymphomas by flow cytometry. The test results pointed to a rare form of lymphoma, Sezary Syndrome.
The first chapter of my role as caregiver began. Because I was a clinical laboratory scientist, I knew that additional tests were needed to confirm the diagnosis. They confirmed that my mother had a rare type of T- cell lymphoma. At that point, I put my role as a daughter aside and got down to business. I had to make intellectual not emotional decisions. My background was both a blessing and a curse. I knew too much about lymphomas to live in ignorance. She needed a specialist that dealt with cutaneous T-cell lymphoma and we began the arduous search for the right doctor.
I contacted her primary care physician, her allergist and everyone I knew that could help. They too needed and wanted to know what was wrong with her. We were lucky to live in Manhattan, home of one of the best cancer treatment centers in the world, Memorial Sloane Kettering. We were referred to Dr. Steven Horwitz, who would take care of my mother until the end of her life. I felt confident that she would get the proper treatment and care. I continued to monitor her illness as a scientist as well as a daughter and caregiver, with support from colleagues, family members, and close friends that lived nearby.
I took on the stressful and daunting role as her primary caregiver. My mother relied on me and was confident that I would guide her in the right way. We did not know what was ahead of us, or how much stress we’d have to endure. We faced a lot more than we bargained for. Her advanced disease was stubborn, aggressive and defiant. It was a long and strenuous journey for both of us that would continue until November of 2010 when she finally lost her battle.
Treatment and Remission
My mother had an aggressive form of Sezary Syndrome. Her skin required more than just daily doses of steroid-based crèmes. She had extensive disease and the types of treatments she underwent were a conglomerate of oral and systemic therapies. She was the first to undergo photopheresis at Memorial Sloan- Kettering. Fortunately, the six months following her diagnosis were relatively uneventful. She took a topical chemotherapy called Targretin, and we were able to go on a trip to Europe.
Unfortunately, the effectiveness of Targretin was short lived. She began to relapse, and the subsequent therapies she received were unsuccessful. Once again, we faced uncertainty.
In December 2007, she was close to death with a systemic infection that required hospitalization. I knew I had to be strong and courageous. The support system around me kept me going. I had no choice but to face what might happen. Miraculously, she survived the infection. She was a strong woman. She made a remarkable recovery and began treatment with a powerful chemotherapy that put her into remission. It was a miracle that astounded everyone. I took a brief break to regroup and gather my strength. I knew the remission would not last forever and I was determined to stay healthy in order to take care of her. My mother’s remission lasted a glorious 18 months. She looked great, had energy, and felt optimistic. During this time, she produced some of her best paintings. She has painted since she was four years old. The inability to use her hands when the disease was full blown was her greatest setback emotionally and psychologically.
Putting Life “On Hold”
It may sound cliché to say that one must put their life “on hold” when caring for a loved one with a serious disease, but in fact it is a necessity. In my case, although I had friends, a full time job, and yoga classes at my disposal, my own personal desires, aspirations and goals were on the back burner. My mother’s physical comfort and quality of life was my priority. No matter how stressful it is to be a caregiver, ultimately it is the patient who suffers the most. She herself was concerned for my well-being and tried her best to be stoic in the middle of chaos. I faced each day with faith, knowing that the next day would be a new one, no matter how challenging the events would turn out to be.
Her skin required frequent dressing, disinfecting, and bandaging of open areas that were particularly severe on the soles of her feet and the palms of her hands. She had a collection of white cotton gloves that I would pick up at a local drugstore. These gloves were a salvation for her scarred and painful hands. In addition, she suffered from hypothermia, and a hot water bottle and a heavy robe kept her relatively comfortable. It was a battle against the elements; she had compromised skin that could not protect her. Eventually, another bout of infection landed her in the hospital with severe swelling of the legs. I was overwhelmed and didn’t know where and how to begin taking care of her properly, but I discovered that I was capable of more than I could ever imagine. Her swollen leaky legs required having to wrap them in gauze after smearing them with special ointments and swabs that are used in burn units. My mother came to the conclusion that I should have been a surgeon. She would not permit anyone but me to take care of her legs.
My mother has been gone for almost two years now. I have no regrets as her caregiver. At the end, we knew her quality of life was severely affected and we respected her wishes to keep her as comfortable as possible and out of pain. I can vividly see in my mind the image of my mother wrapped from head to toe in a thick blanket. At the hospital, they always had a heater and an extra blanket waiting for her.
I learned many lessons as my mother’s primary caregiver. Although I lost many days and hours of work along the way, being a caregiver taught me to value life and not take anything for granted. Also, I shared memories and dreams with my mother that under normal circumstances would have gone unnoticed. These are precious to me. I encourage all caregivers to take advantage of the Cutaneous Lymphoma Foundation and keep up to date with the latest in skin care, treatments and support groups. Remember that there is always hope and help.
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