Meet Phyllis from the 2015-2016 Team of Advisors

 We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she can (she’s run 18 marathons in her life).

Phyllis is also involved in a mentoring program at University of Pennsylvania, in which first-year medical students shadow her for over a year. The purpose is to bring humanity back to medicine by helping the next generation of doctors to better understand the patient perspective.

Below, Phyllis describes the power of a positive attitude and shares the lesson she’s learned from living with cancer: “Every day is a gift.”

What gives you the greatest joy and puts a smile on your face?

My eight grandchildren. In 2005 when I was diagnosed with CTCL (Cutaneous T-Cell Lymphoma) and later Sezary Syndrome, a non-Hodgkin’s lymphoma, I had three young grandchildren. Now 10 years later, I have the joy of seeing five more.

I always enjoyed running. I was a marathoner (completed 18), but once I got my cancer, my energy level plummeted and sun exposure was limited due to drugs I still take. I now smile when I can take a brisk walk on a beautiful day. Mother Nature in all her glory makes me feel joyous and alive.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Having my cancer is a full-time job! Living with my chronic non-Hodgkin’s lymphoma, and then developing a Hodgkin’s lymphoma was not expected. I undergo photopheresis treatments twice a month at the University of Penn, give myself interferon injections twice a week and apply topical chemo or steroid drugs on my skin every night. I also have scars on my arms and legs from the cancer lesions and from radiation. Perhaps the rarer diseases should get more publicity so people would know what orphan disease patients are going through.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

CTCL is not a skin cancer although it starts on your skin! It is a lymphoma, that in my case has progressed to the blood, the leukemic form called Sezary Syndrome. When it progresses to your lymph it is most aggressive. Your skin can get very red and unbearably itchy. Lesions can develop anywhere on your skin. It is a disease that can be very visible to others. There is no cure, but one may be lucky to get into remission. I have not been so fortunate after 10 years of enduring this, but I am optimistic and grateful for new medicines, innovative treatments and most of all, caring and knowledgeable physicians.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Be positive and keep a sense of humor. Educate yourself about your condition. Share your medical diagnosis only with family and friends you trust, especially in the beginning before you have your medical treatments finalized. Some people are just curious, nosey and gossips!

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important and very educational and very comforting.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

I am happy when I can help another patient who has my condition because it makes me realize how well I have coped.

Has having a serious chronic disease changed you in any way, negative or positive?

Yes. Once I got my cancer under control, I realized that every day is a gift. I feel that I appreciate life more and live each day to the fullest. I have learned “Don’t sweat the small stuff.” I love the spiritual perspective on life that came about because of my cancer.


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1 thought on “Meet Phyllis from the 2015-2016 Team of Advisors”

  1. Susan Paprocki

    I just discovered your post. My husband has sezary and on romidepsin and is in remission. He tried interferon and it did not work for him. I am happy for you that it worked. Good luck!

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