Forum, Fall 2012
5
My Personal Journey With Cutaneous Lymphoma: A Caregiver’s Perspective
Francesca R. Giancotti, PhD
New York, NY
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.
Caregiving Begins
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
“Francesca Giancotti: My Personal Journey” – Continued on Page
15
I shared memories
and dreams with my
mother that under
normal circumstances
would have gone
unnoticed. These are
precious to me.
