Thursday, July 26, 2007

A Little History

To give you all a little background, I was diagnosed with follicular lymphoma, Stage IV, in January 2002. Like everyone else who hears the word "cancer," my husband Alex and I were shocked and stunned. In the split second that it took for a doctor to utter the words, "You have lymphoma," life as we knew it ceased. Cancer plunged us headlong into unfamiliar territory without a compass or a map, much less the time to get our bearings. It cast us into a world of language we often didn't understand, compelled us to trust my life to total strangers, and forced us to make choices without our fully understanding the consequences. I've often had more time to find the perfect pair of shoes to match an outfit!

Fortunately, we live in Ann Arbor and happened to land at the University of Michigan in the hands of one of the top lymphoma experts in the world, Dr. Mark Kaminski, the developer of Bexxar, but we didn't know who he was at the time. Much later we would realize that I was incredibly lucky to be at the right place at the right time.

But back then, Bexxar and Zevalin, the two radioimmunotherapy drugs, were both under FDA review. At the time, I would learn that there was no cure for my type of lymphoma. Chemotherapy generally slowed the disease but it always came back. Remission periods varied from patient to patient, but each subsequent relapse would require stronger drugs until eventually no options remained. That wasn't exactly the future I had envisioned.

I started out in a clinical trial in which I would take 8 rounds of CVP followed by a vaccine six months later if I stayed in remission that long. I quickly failed that trial. After two rounds of CVP, it was clear my disease was not responding. R-CHOP came next, but after five of the planned eight rounds, my disease came roaring back.

But chemo did a lot of things it was expected to do. It deprived me of my hair, helped me to forget what day it was, gave me various infections, pneumonia, tumor lysis syndrome, complete exhaustion, and a couple of spontaneous vacations in Hotel Hell, otherwise known as the hospital. On the bright, it bought what I needed most - time.

For eight long months, I'd been fighting the battle, and lymphoma was clearly winning. Bexxar was still under FDA review, but Zevalin had received approval and Dr. Kaminski wasted no time making the arrangements for me to get it.

Early on September 11, 2002, Alex and I headed to the hospital for what we hoped would save my life. As we drove and listened to the news on the radio, the contrast couldn't have been greater. It was the first anniversary of 9/11, and I couldn't help but think that any one of the people who had died that horrible day would probably have traded with me for that extra year, even if it meant they had to have lymphoma.

Zevalin worked. Six weeks after the treatment, my scans showed no evidence of disease, and there has been no sign since of the ugly beast that tried to claim my life. It's been nearly five years since RIT rescued me after all else failed, and my life has taken a direction I never dreamed that it would. I wrote a book, co-wrote the blog with Mort, now write this one, and have become very vocal that cancer patients deserve to know all their options, including RIT.

Will write more about that on Monday. For now, I hope all of you have a wonderful weekend!


1 comment:

H. William said...

Great transition Betsy your efforts are appreciated

Bill Levy