Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2012 newsletter.
Reflecting back now, I see that helping my brother Andrew Lotz deal with cutaneous T-cell lymphoma (CTCL) actually has been a blessing in a weird way. We’ve become closer, I admire him even more and I now donate professional skills to a meaningful cause.
My perspective wasn’t as balanced initially. Confusion and frustration preceded understanding and optimism – emotions shared by caregivers and patients.
The journey began with disbelief as Andrew’s 2009 diagnosis took a while to sink in. He seemed so healthy, not at all what I imagined someone with cancer would be like. I didn’t know anything about CTCL, but I had access to medical literature as a health biostatistician and searched intensively to see what clinical trials had been done and what data was out there. But I found only studies of patients in their 70s – not their early 30s like my older brother. All I came up with were more questions.
I did get answers, though, when I discovered the Cutaneous Lymphoma Foundation website, which has clear definitions and information that let me understand the diagnosis and CTCL sub-categories.
Attuned to Needs
My brother and I live just three miles apart in Pittsburgh, where we work in separate departments at the university, so I offered to drive him to chemotherapy appointments during 2010. Andrew insisted on going alone, which I understood stemmed from a desire to live normally and do what he used to do. Still, I tried to be an assertive little sister or maybe more like a protective mom, also urging him to get enough rest.
Similarly, when I could tell he wasn’t himself emotionally, I found a counselor on campus who specializes in helping cancer patients. I pushed and prodded Andrew to make an appointment, just as a caring friend had done for me when I struggled a bit as an undergraduate at St. Olaf College in Minnesota.
Facing serious challenges together brought us closer. It’s my journey too.
Andrew, a political scientist, had relocated first to the University of Pittsburgh, where the Department of Biostatistics in the Graduate School of Public Health also turned out to be a good fit for my doctoral studies. Though academic careers and personal lives earlier affected our amount of “sibling time,” that has changed. We see each other once or twice a week, which I appreciate while my husband is in Africa with the Army National Guard.
Andrew and I also run together. We were on cross-country teams in high school and now are training for the Pittsburgh Marathon in May, when he’ll run a half-marathon. I did the full route in 2010 and have registered again.
Useful Foundation Forum
Last October, I accompanied my brother to one of the Foundation’s Patient Educational Forums, presented with the University of Pittsburgh Medical Center. I met his doctors, took notes during presentations and participated in the question-and-answer session.
In addition to providing support, I wanted to know more and to get accurate information that could help me serve as Andrew’s patient advocate. He knows I’m forceful, so we’re a strong team.
As it turned out, I’m making another contribution. One doctor mentioned at the forum that she wanted to do a data-driven study but couldn’t get a grant and needed a statistician, so I went up afterward and volunteered to help with the research. It’s a way to give back, something I can do.
Through all of this, Andrew has been so positive and inspiring. I actually get support from his optimistic attitude, so it’ a two-way partnership. We count on each other.
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