About Betsy

A humorous, intimate, compassionate insight into the experience of illness and the process of recovery

Writing this page was the hardest of all. What do you say about yourself? Well, I suspect you're most interested in my encounter with lymphoma so here's the short version.

January 7, 2002. I had lots of plans for the new year. Then I got the news. Follicular lymphoma had different plans for me, and I spent most of 2002 in the fight for my life.

When I was first diagnosed, my husband Alex and I knew very little about cancer and even less about lymphoma. We quickly learned that the only treatment available at the time, chemotherapy, could slow the disease, but invariably it would come back and require stronger drugs. Cancer, it seemed, was about to steal our future.

I enrolled in a clinical trial in which I was supposed to take eight rounds of CVP followed by a vaccine six months later. Two rounds into treatment, my disease wasn’t slowing down at all. R-CHOP came next, but after five of the planned eight rounds, my stubborn disease was still going strong.

While chemo failed to deliver the coup de grace we’d hoped for, it did live up to its reputation for delivering other results. It deprived me of my hair, helped me to forget what day it was, made me a world-class nap-taker, caused more side effects than I care to recall, and sent me on a couple of vacations to Hotel Hell, otherwise known as the hospital. On the bright side, it bought what I needed most: time.

While I was undergoing chemotherapy, the FDA approved a new treatment for lymphoma: radioimmunotherapy (RIT). Because RIT attacks lymphoma very differently than chemotherapy, it was a logical choice for the next assault on my obstinate disease, but for a number of reasons, RIT was difficult to get. Fortunately - for once in my life - I was in the right place at the right time. Dr. Mark Kaminski, who happens to be the developer of one of the two RIT drugs, was also my doctor, and he knew exactly what to do.

As Alex and I traveled to the hospital for the full dose of RIT on the morning of September 11, 2002 - the first anniversary of 9/11 - we grieved with the nation and for the families had who lost loved ones, yet we hoped that the new treatment would breathe new life into me. Indeed it did – we’ve not seen lymphoma again.

But something else happened that day. During treatment, Alex and I had one of those “ah-ha” moments in life when realization hits. We all have them. For months, all I’d wanted to do was get well, get back to my busy life, and never think of lymphoma again, but as Alex and I watched the drugs drip into my veins - voila! - we suddenly realized that it had taken years to make the moment possible. Scientists had taken ideas from labs to clinical trials to the world of business and finance and finally to the FDA. Organizations and individuals had supported their work. Patients had participated in clinical trials. Hundreds, maybe thousands, had contributed in ways large and small to make our second chance possible. How could we possibly walk away? We knew then that we would play some small part in helping those who would follow in our footsteps, just as so many others had done for us.

In the ensuing years, life has been a juggling act between two very different worlds. Alex and I have a homebuilding/development company and my “real job” as vice president of marketing and sales keeps me very busy, but lymphoma continues to be a part of our life and it has taken me on paths I could never have imagined. The book, a blog I once wrote, and speaking engagements have connected me with people from all over the country and from all walks of life.

I’ve met people who took RIT in clinical trials as early as 1996 and who have never had a recurrence. They are my beacons of hope and like me, they belong to a growing group of people who are living normal, healthy lives because we were the beneficiaries of this new, life-saving treatment. For us, there are families to love, children to raise and grandbabies to spoil – all because advances in medical science gave us back our lives and because we’re lucky enough to have doctors who use them.

But I also wondered why many people I ran across were unfamiliar with RIT. Extensive research substantiated that it has not been widely embraced as a treatment option, for reasons that are explained in the section about Radioimmunotherapy and about which several independent journalists have written. Awareness of RIT has begun to increase, but it still faces obstacles which, unfortunately, have nothing to do with its effectiveness but which have the potential of impacting patients.

And so my commitment to raising awareness of lymphoma and RIT continues. This in no way suggests that I believe RIT is right for every lymphoma patient. It isn't, nor am I qualified to make that determination. I simply believe that every patient deserves the same chance I had and that every patient deserves to know every available treatment option, including RIT when it is appropriate as determined by an oncologist.

More than seven years have passed since my treatment and I remain disease free. Each day, Alex and I are grateful to RIT for giving us back our future, and we’re busy living it, but the common bond we share with other patients and families continually gives us strength and inspiration, and we hope that my recovery shines as a bright beacon of hope for the patients and families who face lymphoma.

Next: Lessons Learned

Betsy's Lymphoma Story

Dr. Jafar administers RIT, September 11, 2002

Alex and I are doing things we love again,

thanks to RIT!

After reading the book, many have asked what happened to my mother. She passed away on August 28, 2005, eleven months after this photo was taken, with my daughter, on her 95th birthday. During my illness,

I tried to protect her by telling her as little as possible, but we all know you can't fool a mother! I ultimately did give her a copy of the book and she was glad, finally, to

know the whole story and that I was ok.

to learn about radioimmunotherapy and read other success stories!

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