Wednesday, September 17, 2014 Elul 22, 5774

Twin Sisters with a Single Mission To Stop Myeloma

April 23, 2013 By:
Diane McManus, JE Feature
Posted In 
Comment0
Enlarge Image »
Double play: Marilyn (left) and husband, Earl Kostrow, join her sister Sharon at a support group meeting.
In 1993, Marilyn Alexander learned that she had three to five years to live. Diagnosed with multiple myeloma — a cancer of the plasma cells, which play an important role in the immune system as they produce and release antibodies to fight infection — she had, at the time, fewer options than patients do today.
 
Fast forward to 2013: Alexander, 64, is not only very much alive, but is also an advocate, organizer and enthusiastic spokeswoman for the fight against multiple myeloma.
 
That battle includes a 5K fund­raising race — Miles for Myeloma — scheduled for April 27, on Martin Luther King Drive. Participants can choose to walk or run and can register as an individual or with a team.
It is teamwork which has helped Alexander survive and thrive. Indeed, what has happened in the intervening years since discovering her illness speaks volumes about the human spirit and the will not just to live but to thrive. 
 
When she first learned of her diagnosis, Alexander reports being in “a state of shock.” Her twin sister, Sharon Alex­ander, came to her aid, accompanying her to doctor’s appointments and spending countless hours researching the disease at a time when neither the Internet nor information about multiple myeloma was nearly as available as it is today. 
 
But Sharon donated more than time. Because Marilyn was relatively young and healthy, the treatment of choice could be aggressive. The sisters decided on a bone marrow transplant — and Sharon supplied the bone marrow. 
 
In 1993, this involved both sisters submitting to surgery. The treatment was grueling — an 18- day hospital stay, along with intensive chemotherapy — but it was successful.
 
Once she returned home, Marilyn realized she would need a support group — and although support groups were available for other cancers, including blood cancers, she wanted one specifically for those with multiple myeloma. 
 
She joined forces with Phil Falkowitz, also diagnosed with the disease, as well as other patients she’d met, to found the Philadelphia Multiple Myeloma Networking Group.
 
Early meetings took place “around a kitchen table,” says Marilyn. However, as word spread, the need for more space grew. From the kitchen table, the group moved to the Wellness Community (now the Cancer Support Community of Phil­adelphia), and finally to its current meeting location, Ralston House in University City. 
 
From five people in its first year, 1995, the organization has grown to more than 300 members. 
 
Joining also was Maddie Hunter, diagnosed with the disease when her son was only 9. At the time, she lived in central New Jersey, but finding no nearby support groups, she learned of the Phil­adelphia group through the Internet. 
 
Although she has since moved to Ossining, N.Y., Hunter continues to play an active role in the Philadelphia group, driving to the monthly meetings that she facilitates. 
 
After treatment, she reports, she began to “reinvent” herself, developing her own coaching/facilitating business. While she originally joined the group to receive support — and “loved it” —she was tapped to take over as leader when the previous leader moved out of the area. 
 
Organization board member Falk­owitz describes the group as offering “heavy-duty support,” providing not only information and bringing in experts to speak, but also the all-important emotional support, “a shoulder to cry on,” as he puts it.
 
Not only is the organization’s membership growing, but so are treatment options. Falkowitz, who was diagnosed in 1997, describes a process whereby each member is given a name tag, and during the Chanukah/Christmas season, a star is placed on the tag indicating another year of survival.
 
Even so, the losses still come, and for those who have made friends among fellow members, that aspect of the support group is especially difficult.
 
Karen Horan, for example, who became a member as a result of her husband’s diagnosis, has had to mourn his passing. She values what the group gave to her and her husband, Mike.
 
Indeed, she has lent the group her vigor, serving to get the 5K race off the ground.
 
“This event gives the entire myeloma community the opportunity to come together and honor those who are living with the disease and pay tribute to those who have lost their battle. It is truly inspiring and it gives me the opportunity to show my children who the real heroes and role models are in their lives.”
 
For more information about the 5k event, as well as support group meetings, visit: phila­delphia.myeloma.org.

Comments on this Article

Advertisement