Myeloma Today: Please tell us about your first contact with myeloma.
Janet Johnson: My husband Art was feeling tired with various aches and pains. In hindsight, he followed a pattern similar to many ? several doctor's visits, no clear diagnosis, no improvement ? just a lingering period of not feeling well. Finally, in July of 1997, Art was diagnosed with myeloma.
MT: When did you first contact the IMF?
Janet Johnson: Where do you go today to find out about something unfamiliar? To the Internet! We gratefully found the IMF website, were guided to a friendly voice at the end of the phone line, and welcomed the prompt response ? the IMF InfoPack was the first in a long line of useful information we received from the IMF. How grateful we were ? and still are!
MT: How did you get involved with the Los Angeles Area Support Group?
Janet Johnson: We had lived in Michigan for 35 years, but decided that L.A. would be our new home in 1998. Two of our three children were there, and doctors with myeloma expertise were there as well. We attended a luncheon hosted by the IMF and found a whole roomful of patients and caregivers. Until then, we had not met anyone else with myeloma. We learned so much that day and responded to a request to assist in forming a support group in the L. A. area. From a committee of eight people at the start, the L. A. support group has now grown to more than 100 patients, plus caregivers. We call upon doctors, exercise specialists, alternative medicine advocates and pharmacists to speak at our monthly meetings.
MT: Please tell us about the formation of the Circle of Friends.
Janet Johnson: Art and I were looking for a new car, and we considered getting a fun car, perhaps a convertible to enjoy the California sun. But our thoughts turned to more timely things: Why not take $10,000 of our car money and use it as a ?downpayment? for myeloma research. It was clear that the answers to everybody?s needs would come in the form of research, so we adjusted our lifestyle to find room to make this contribution which, in the end, would be helpful for everyone. Art and I brought this up at a meeting and a committee was formed, an adjunct to our support group, called the Circle of Friends. In two years, that group has raised more than $290,000 for myeloma research! We are doing something concrete, for ourselves and for others.
Our group is also interested in quality of life issues, so we have held a weekend retreat at a ranch of a very generous couple in our support group. They also helped us become the recipients of proceeds from a concert.
We meet at the home of a group member who has had myeloma since 1994; her father also had myeloma. She is a very creative thinker and suggested that some people might like to write stories about their myeloma journeys. Twenty-two of our group members contributed their experiences. The book, Living with Myeloma: Survivor Stories, was published with the proceeds supporting the Circle of Friends Research Grant Fund, awarded through the IMF.
MT: How are you and Art living with myeloma?
Janet Johnson: We consider it ?our? disease. It influences our lives every day, but it is not our total focus. Art had kidney failure at diagnosis and that has not reversed to this day. He has dialysis three times a week, 3 1/4 hours each time. But we have managed to take two cruises and have another planned this summer. Art is almost glad for his monthly dex pulse ? it improves his golf score! Thalidomide (50 mg) has brought his hemoglobin from a scary 5.8 up to more than 12, and his energy has returned. For the most part, Art is doing remarkably well ? he golfs, plays with his 4 grandchildren, and is now constructing a 20? cardboard airplane for a birthday party. Although myeloma is a bummer, you can still live an interesting and full life.
In the last five years, the improvements in available treatments have been dramatic. Together, education and research are making a difference. And we applaud the IMF for a major role in those changes.
Editor?s Note: IMFers who are considering starting a
support group in their communities are welcome to write Janet Johnson at