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A Profile of Hope—Bill’s Story

In the words of Bill H., who was diagnosed with indolent non-Hodgkin's lymphoma in 1995, and is immediate past President of the Lymphoma Research Foundation . . .

PAT MERKLIN ETAL

My experience with lymphoma

It was September, 1995 when I started noticing some small bumps or nodules on my scalp.  As Chief of Cardiac Surgery at INTEGRIS Baptist Medical Center in Oklahoma, I knew I should see a physician and have it checked out.  But I was just too busy with my own surgical practice and kept putting it off for "someday."

Someday came when a nodule appeared on my face and I could no longer postpone the inevitable.  A biopsy, followed by a more careful exam, revealed an enlarged lymph node that gave the final diagnosis of malignant lymphoma.  I reviewed the biopsy slides with a pathology colleague who was very kind and sympathetic, but the blow of receiving a cancer diagnosis was overwhelming despite my long experience helping patients in similar situations. I suffered a complication from the biopsy site, which led to a severe infection.  I was very ill, frightened, and felt like I was facing my own immediate mortality.  That was eight years ago.

After the initial shock from the diagnosis wore off, I did what most cancer patients do - I got busy learning all I could about the disease.  The type of lymphoma I was diagnosed with had no treatments or cure - follicular lymphoma.  The course of treatment prescribed was "watch and wait," a strange concept for a surgeon to grasp since my idea of treatment usually involved something much more definitive.

My physician at the Dana-Farber Cancer Institute suggested that I meet one of his patients, who had also been diagnosed with the same form of the disease and had lived seven years so far with a "watch and wait".  After talking with his patient, Doug, I realized the importance of meeting others facing the same challenges as you.  He was a great help to me and I will never forget his words of encouragement.  He had continued to practice law and adjusted to living with a widespread, incurable malignancy.  Though sometime later he did require chemotherapy, he continues to enjoy a long term remission.  We have become true friends and partners in a tough game.

After over 30 years as a surgeon, I decided to take leave from my practice so that I could instead work full time as an advocate for patients with hematologic malignancies, despite advice from several lymphoma specialists that I could, and possibly should, continue with my surgical practice.  I now devote myself entirely to advocacy for lymphoma patients.  My family and friends tease that I'm the busiest, unpaid physician in the country!

How I became involved with LRF

I became involved with the Lymphoma Research Foundation (LRF) - the nation’s largest lymphoma-focused non-profit. The foundation has a program that matched newly diagnosed patients with others facing the same disease-type (there are over 30 different types of lymphoma). Participating in this patient-to-patient program led to my speaking and counseling patients from across the country through LRF’s Lymphoma Support Network.  It was a chance to offer others the emotional support and encouragement I so badly needed when first diagnosed. 

My life now

While I had long encouraged my patients to be their own best advocates with respect to their treatment and care, as a patient I realized the importance of a different type of advocacy - one that would lead me straight to Capitol Hill.  In June 2003, I testified before the U.S. Senate Defense Appropriations Subcommittee to request $25 million in funding for a national blood cancer research initiative.  I've also participated in the annual Blood Cancer Advocacy Days, which provide patients and their families a chance to meet face-to-face with lawmakers and advocate for more blood cancer funding.  I am now President of LRF and plan to keep on going to Capitol Hill to urge Congress to pass initiatives that will help speed the discovery of better treatments and eventually cures for the nearly 500,000 Americans suffering from lymphoma.

Would I choose this life with cancer if I had a choice?  Perhaps.  I believe it has made me a better physician, a better husband and father, and a better friend.  And through advocacy, I’ve learned that I do not have to live with a feeling of helplessness - because there is hope.  

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