Myeloma Today: Please tell us a little about yourself.
Andy Lebkuecher: My wife Cathy and I met in 1961. We married in 1964. We have three children. After school, I went to work for a microwave electronics company and spent over 40 years in that business. My last position was as a manufacturing manager for an electronics firm that works with cellphone equipment.
MT: How did multiple myeloma enter your life?
AL: It was quite a surprise. For about two years, Cathy had a problem that kept getting worse. She had bone pain, she lost five inches in height. She was treated for osteoporosis even though no doctor could diagnose her. Then my rheumatologist (I have arthritis) sent her to a doctor who finally determined that she had myeloma. Based on the old staging system, she was in stage III of the disease. She had compression fractures in her back; she had broken ribs. She was in extreme pain. But Cathy was almost joyful because she had gone for so long not knowing what she had. At least now it had a name.
MT: What steps did you take once Cathy was diagnosed?
AL: Like most people who find out one day that they or a loved one has myeloma, we’d never heard of it before. I said, “OK, I guess we need to learn about this.” It was a difficult learning process. I had access to a computer at work but, in 1993, there was very little available information. Thankfully, I found the myeloma listserv on the internet. We attended an IMF Patient & Family Seminar in Virginia and became very involved with the Foundation.
Cathy went to a local oncologist and started on the standard melphalan and prednisone regimen, and had a quick response. We discussed the possibility of her having a bone marrow transplant and traveled to several myeloma centers around the country for consultations. We decided on an autologous transplant, in part because of a better survival rate and in part because Cathy has no match for an allogeneic transplant, although she has seven siblings and three children. In 1994, she had the transplant. By the way, her transplant was a bone marrow transplant, not a stem cell transplant. She had a quick response but it was not a lasting one. She had to go back to more chemotherapy.
We traveled to IMF seminars at least once a year, if not two or three times per year. We got to know Susie and Brian quite well. We got more involved with the IMF. In 1997, the Atlanta myeloma support group was founded. It started with six people Cathy and I and two other couples and now has a membership of about 300 people. Cathy and I would pass a church on the way to the hospital and we thought that it would be a great spot for our group meetings. As it turned out, the church had a new pastor who was very big on outreach. So that’s where the group has met from its inception up until this month. When the property was sold, our support group had to find another home. Now we’ve relocated to another church nearby.
MT: What exciting projects are you currently working on?
AL: I am very excited about being involved in establishing more myeloma support groups and helping the existing groups grow so that we can spread the word a little bit more. We are also trying to help the patients who are uninsured or under-insured, or just don’t have sufficient access to education about myeloma. Right now I have a trial program going with doctors at Grady Memorial Hospital, a municipal hospital in Atlanta which provides medical care to the under-served residents of this community. We are working on organizing inner-city seminars with local oncologists.
As 2005 gets on its way, I am very happy to welcome Robin Tuohy to the IMF staff. Robin is a long-term supporter of the IMF and caregiver to her husband Michael. The Tuohy Family has been involved in creating and spearheading a variety of projects to benefit the IMF. In her new role, Robin will assist with the expanded support group functions, collecting and disseminating information. She will also assist the IMF in fulfilling our CDC Grant requirements, as well as serves as a touchpoint for doctors and support groups in the Northeast.
I am looking forward to helping expand the IMF and getting the support groups more involved with the myeloma community at large, as well as helping the groups be more interactive with each other. This should help the small groups become larger which, in turn, will help disseminate education about myeloma and offer more resources to patients and caregivers. The IMF’s commitment to education is one of the things that sets it apart. Getting the information out is essential to helping people make educated decisions. This helps the patients and the caregivers and the doctors be a team. I stress the idea of the team and the empowerment of the patient. For now, there is no cure for myeloma but there are a lot of things one can do. But to ask the right questions when you meet with your doctor, it’s essential to understand your options, to be educated about myeloma. Knowledge is power.
MT: What would you like to share with other IMFers?
AL: Cathy and I have taken the approach of “We’ll do what we can today to keep going in hope that something will comes down the road tomorrow to solve this problem.” At the time of her diagnosis, Cathy was given 4 months. And that was 11 years ago! Our daughters are now 39 and 36, and our son is 27. Cathy was in remission for a short time two years so we’ve faced some challenges but each day we manage to make things work out. Cathy is an inspiration. MT
Note: Andy Lebkuecher can be reached through the IMF, at 678-546-3045, or via firstname.lastname@example.org. To locate a support group in your area where you can meet others dealing with myeloma, please visit www.myeloma.org or call 800-452-CURE (2873). There is a worldwide network of more than 100 myeloma support groups that hold regular meetings for members of the myeloma community.