Despite the fact that one in every two men and one in every three women will be diagnosed with cancer in their lifetime, no one ever expects it to happen to them. I surely didn't. I was an otherwise healthy 37-year-old when I was diagnosed in 1996 with multiple myeloma, the same rare cancer Tom Brokaw has.
In 15 years, we've raised $225 million, sequenced the myeloma genome, and opened 45 trials of 23 drugs – six approved by the FDA – which have doubled the life span of multiple myeloma patients. I've taken both Velcade and Revlimid, which we helped develop.
Every time I go back to the Dana-Farber Cancer Institute to wait for my test results, and I wonder if I've relapsed or if I'm doing okay, I don't think about my company. I'm proud of everything we've done, but at the end of the day, it comes back to family. I'm still a wife, a mom, a sister – all of those things.
When I got really sick and needed a stem cell transplant, I was fortunate to have a twin sister as the donor.
The most important thing a leader can do is set the vision and don't stray. We said, 'We are a research foundation. Our mission is to accelerate cures.'
I'm happy to say that I am in remission. That R word is something critically important to cancer patients, especially in a disease like myeloma. But I never lose sight of the fact that there is another R word called relapse.
Being treated by a doctor who specializes in your kind of cancer is so important, especially for those of us who have rare or very rare cancers. They will have access to newer treatment options that may be offered only at big academic cancer centers, so you don't miss out on treatments that could help you.
I quickly discovered that scientists go where the funding is, so I knew I had to start a research foundation. If you don't raise money and provide research grants, you'll never attract scientists, and if scientists aren't working on a cure, there isn't going to be a cure.
If I've learned anything, it's to live in the moment, and the gift that cancer gives you is, you just assume I'm only here today, and I am going to seize that moment and cherish it.
Although not yet routine, many cancer centers have the technology to sequence some or all of a patient's cancer genome. This can provide massive amounts of valuable information about your cancer, including whether you have genetic mutations and other abnormalities for which new drugs are available.