Cindy Feltzin's Story
I met Vicki in 2001 at a Wellness Community luncheon. Immediately, we had something in common... multiple myeloma. As a caregiver for my husband, Bob, I was taking a crash course in myeloma as Bob began his chemo (VAD) and radiation treatments.
It seems that every day I would have a new concern or question, or even a tearful moment, and I would find myself reaching out to the IMF Hotline. A cheerful voice would always welcome my call and respond to my needs. I didn't know it at the time, but I was already in training to become head cheerleader of the Miami Multiple Myeloma Support Group. The IMF had put me in touch with Ed Blumenthal. A caregiver, Ed organized a Miami support group and ran it until his wife passed away. But Ed still maintained a list of the group's past members. Together, he and I culled the list, made the phone calls, and welcomed the past members into a reorganized group, which Bob and I would run.
When Vicki retired from her position in the Federal Reserve, she had more time to help Bob and me with the Miami support group. In 2003, when Bob and I moved to West Palm Beach, Vicki took over the responsibility of running the Miami group. Vicki's professional expertise and leadership skills have helped this group to reach a new level of excellence. She writes a very detailed monthly newsletter and stays in touch with her members by phone and email. And she always has a hug to welcome each person at her meetings. I am thrilled that the Miami group is in such capable hands.
As Bob and I settled into our new home, our passion for MM education continued. Committed to starting a myeloma support group near our new home, we began to collect names of South Florida patients. On May 6, 2005, with the invaluable assistance of Millennium Pharmaceuticals representative, Rick Sulak, we put the group on the map!
Rick helped secure our first speaker, Joe Tarriman, RN, and we had 30 people gather for our group's first meeting! When Vicki secured Maureen Carling, RN, to speak to the Miami group, Bob and I offered to provide Maureen with transportation and lodging if she would agree to expand her visit to cover both support groups.
Our group's focus is to empower myeloma patients and caregivers with as much support, information, and education as possible. I am happy to offer encouragement and Bob is very good at handling calls and emails that are too technical for me. We have formed relationships with a number of people strictly via phone and email, and we consider them to be full-fledged members of the group. As winter approached, we have welcomed a number of "snowbirds"* from other parts of the country to our group, and I encourage all members of the myeloma community to join us when they come to South Florida.
NOTE: Cindy and Bob Feltzin can be reached at email@example.com or 561-624-8888.
Vicki Anderson Ferraro's Story
My entire working career was with the Federal Reserve Bank. From the mid-1990s until I retired in 2003 I served as an official in the Retail Payments Office of the Federal Reserve System, with responsibility for the Automated Clearinghouse (ACH) product development function. It was an exciting, one-of-a-kind job that required extensive domestic and international travel and there was intense pressure and lots of long hours.
In 1999, after being anemic for a long time, my primary care physician referred me to a hematologist. I was told that I had MGUS. Although the doctor said that he wanted me to have a bone marrow biopsy, I just never got around to doing it because I was traveling so much. Several months later, I became very ill while out of the country on business. When I returned to the US, I went to the emergency room, with extreme fatigue and back pain my primary complaints. I was diagnosed with Stage 3 multiple myeloma. After a few days in the intensive care unit and several more days in the hospital, I returned home to recuperate.
I took a two-month leave but, being a workaholic, I couldn't wait to get back to the office. I wasn't going to be a "sick person" or let myeloma interfere with my life. In retrospect, getting back to work helped me cope with the diagnosis and prognosis of an incurable cancer. (Of course, now I have outlived all the statistics that I was quoted at the outset!) During this time, a friend had encouraged me to contact the IMF. I found the IMF staff very caring and helpful and the information and assistance that the IMF provided was invaluable.
Facing a range of treatment options, I decided against having a transplant. From my research, I learned that thalidomide was being used with some success on refractory patients that had failed all other treatments. I convinced my doctors to let me try thalidomide as frontline therapy and it worked very well for me for several years. In late 2002, my myeloma began to slowly progress and I realized that although I loved my work, the stress of long hours and constant travel were having an adverse effect on my health. It was a very difficult decision but in February of 2003 I began an extended leave of absence, which eventually led to retirement.
When I was first diagnosed, the IMF helped me locate a myeloma support group, but it met in the afternoons so I was unable to attend meetings due to my work schedule. The support group leader, Ed Blumenthal, kept in touch with me via telephone and mailed me a wealth of information. The group eventually became defunct but, in mid-2002, I received a flyer from the IMF announcing a new myeloma support group that was forming at the local Wellness Community.
I first met Cindy Feltzin at an educational event sponsored by the Wellness Community. Cindy sought me out to tell me about her efforts to start a myeloma group in cooperation with Ed and the Wellness Community. She was so dynamic and passionate about obtaining knowledge related to myeloma, which included traveling to many seminars and speaking to experts about the disease. I liked Cindy immediately and wanted to provide any assistance I could. When Cindy and Bob moved to West Palm Beach in April 2003, I assumed responsibility for leading the Miami support group.
The mission of our group is to provide education, hope, and support in a caring environment to myeloma patients, family members, and friends. My initial goal for the group was to have at least 10 people attend each meeting. By the end of 2003, we far exceeded that goal and were averaging 20 people per meeting. There was a core group of regular participants and friendships began to develop. Everyone had a different story with myeloma but we were able to share experiences and offer support to one another, both in person and on the phone.
Every support group has a personality. Our group is a family. I want everyone who joins us to feel welcome, to feel safe, and to feel very hopeful. The Wellness Community has provided us with a wonderful meeting environment and an outstanding facilitator, Mae Greenberg. The local Millennium Pharmaceuticals representative, Norma Ortega, has been extremely supportive and has significantly contributed to the success of our group. She is personally engaged in my annual planning process. Based on feedback received from our members, we develop a draft agenda for the year that is reviewed and approved by the members. Norma and Millennium have generously assisted our group by bringing in excellent speakers and sponsoring refreshments for the meetings, which take place the 4th Wednesday of every month from 6 to 8 PM.
I am very grateful for the many wonderful relationships that have formed as a result of the Miami support group. Sadly, last year we experienced our first losses and we still feel the void left by several long-time members. I am delighted that their spouses still attend meetings on occasion. I keep in touch with them and assure them that they will always be a part of our group. We continue to welcome new members and I am encouraged that we have had at least one new attendee at each meeting for the past few months.
My husband Dennis and I have become good friends with Cindy and Bob Feltzin. Last year, the four of us traveled to Los Angeles together to attend the IMF Gala and take in some sights. Cindy planned a whirlwind of activities while we were there and we had a fabulous time. Cindy and I also work together to support and promote each other's groups. One successful strategy that we pursue is to share speakers when possible. The Miami group meets Wednesday in the evening and the Palm Beach group meets on Thursday afternoon, which has allowed us to invite speakers to address both support groups on consecutive days. Cindy and Bob are very gracious hosts, and they have even provided transportation from Miami and opened their home to speakers. Like Cindy, we welcome visitors and encourage all myeloma patients, family members and friends to attend our meetings if they are in town.
NOTE: Vicki Anderson and Dennis Ferraro can be reached at firstname.lastname@example.org or 305-665-8284.