Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2012 newsletter.
I’ve learned as much about my inner strengths as I have about my medical condition since being diagnosed with cutaneous T-cell lymphoma (CTCL) in 2009. I now know about bouncing back from physical and emotional challenges, about the value of support from family and students, and about how sharing experiences helps other patients.
A big lesson is that there’s nothing remarkable about any of this. I’m not better-equipped than anyone else. We all adapt to situations that arise.
Before my progress came a year and a half of searching for a diagnosis. A puffy rash first appeared on one side of my face in 2008. A dermatologist tried three medications for several months each before she sent a biopsy for analysis.
It took four days to get the results, which came via cell phone late on a Friday afternoon in September 2009, right before my 31st birthday. That was the first time I heard about a type of cancer called CTCL. I was alarmed, naturally. No family member had cancer or a skin condition, and all I knew about was Hodgkin’s lymphoma and non-Hodgkins.
Reality Check from Foundation
Finding the Cutaneous Lymphoma Foundation through a web search provided a reality check about critical differences between CTCL and riskier forms.
Further understanding and reassurance came as treatment began at the University of Pittsburgh Medical Center, known as UPMC, conveniently located a few blocks from my political science department on the same campus. I kept teaching and walked to the dermatology office of Dr. Larisa Geskin and Dr. Lisa Grandinetti, who still provide my care.
I have a rare variant – folliculotropic CTCL – that doesn’t fit the usual profile. Cancerous cells congregate in hair follicle, which means it’s deeper than a skin condition and requires combined therapies for an aggressive approach. And at age 33, I’m far younger than most patients – as was clear when I joined a support group at the hospital and again later at two Patient Educational Forums hosted by the foundation.
Dr. Geskin, whom I still see monthly, started me on oral Targretin in fall 2009. At 6-feet, 6 inches, I’m a big guy, so I took up to eight pills daily. New patches still developed, including on my face, left hand and legs.
Radiation and Chemo
The next step, site radiation, used lead plates with customized cutouts to expose only the patches. That reduced the swelling, which hasn’t come back. Patches remain, though facial ones are the least visible.
After trying Zolinza pills for a month, I participated in a research study of Ontak – an intravenous chemotherapy drug administered in about 15 minutes three times every third week. There was no hair loss, but fatigue was a side effect.
I continued teaching, but often had to sit and cancelled a couple of classes. Students were understanding and became an important part of my support network through their caring and encouragement. I’m typically vigorous in the classroom and thrived on bursts of energy, but would collapse into my chair at the end of a lively hour. During 2010, I taught just one spring course and another that summer.
Ontak didn’t halt the spread of patches, so I was switched to Istodax – an IV drug administered over four hours once a week. The regimen lasted three weeks at a time, followed by a week off, and lasted from August 2010 through that fall.
That was a tough drill, leaving me drained for three days after each session – scheduled on Thursdays to allow weekend rest. Istodax hammers white blood cells and platelets, causing fatigue, paleness and vulnerability to easy bruising – even from keys in a pocket.
Later that year, Istodax drips were supplemented by Interferon shots a day later. I had to wear a surgical mask when in groups because of increased infection risk.
Those harsh medications generally are Stage IV treatments, though I’m not necessarily that advanced. My status required an internal attack because it’s deeper than other CTCL forms.
The chemo period in 2010 was the roughest it got. I slept a lot, was embarrassed by the face mask and felt depressed.
At my sister’s insistence, I began speaking with a Pittsburgh psychologist, Dr. Linda Ewing, who specialized in the impact of cancer on young patients. Alternate-week discussions were helpful, and I now go every three weeks. I’m thankful my sister pushed that.
Better Quality of Life
I went off Istodax and Interferon in April 2011, which let me resume jogging, keep a fuller professional schedule and live a more balanced life. Ultraviolet A light therapy with Psoralen cream (PUVA) has stabilized the patches, which aren’t spreading. I continue with high-dose Targretin (seven pills daily) for maintenance and use a nitrogen mustard ointment called Mustargen.
Thanks to care providers and the Cutaneous Lymphoma Foundation, I have optimism and a sense of community. I felt out of place initially as the youngest person at my first Patient Educational Forum in October 2010, though it helped to hear patients in their 60s and 70s speak of living with our disease. The foundation’s next Pittsburgh forum a year later was less jarring. I knew some participants and was more accepting.
What I accept is that honesty beats self-pity, and that putting one foot in front of the other is the only way through any rough journey. When you’re in it, you just do it. Resilience displaces regret because it must.
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