Drawing strength
I've been surprised by how many people know someone who has multiple myeloma, and some of them are in national positions where it's easier to make a difference — like Sen. Kay Bailey Hutchison of Texas, whose brother has the disease. [Hutchison, Sen. Barbara Mikulski of Maryland, and others co-sponsored a bill — the Hematological Cancer Research Investment and Education Act of 2001 — that aims to expand blood cancer awareness and research.] When people call and say they're depressed, I reply, 'Wait a minute; we're lucky.' This is a disease that is beginning to move because of Ken Anderson and others.
I attended an advocacy day in Washington this past summer for leukemia, lymphoma, and multiple myeloma. The focus was on drug coverage and people who fall between the cracks. Drugs like thalidomide are fabulously effective, but they're also fabulously expensive and off-limits to people who can't afford them or who don't have insurance. I'd like to see something done. So I nag everyone about that.
What are my sources of strength? My husband and my three kids, my health-care team, and my religion. My desk drawer is filled with all kinds of prayers. People have put me on prayer lists in houses of worship, and the nuns at the schools where I went are praying for me! I do believe in the power of prayer.
My husband and daughter Laura insist on coming with me to my monthly appointments at Dana-Farber. The nurses are wonderful, as are the pharmacy staff, receptionists, and volunteers. And it's not only with me; I see them with all the patients. I think that makes the difference. If you believe somebody cares about you and feels your life is worth saving, how can you give up?
