Marilyn's Story

I was in the midst of purchasing a life insurance policy when a routine insurance exam detected an abnormally high protein in my urine.  My family doctor advised me to wait and see if anything progressed and since there were no other symptoms, I felt comfortable with his recommendation.

However, approximately one year later, I developed severe pain in my ribs and my primary care doctor advised me to see an oncologist.  The first one I saw, suspected that I may have Multiple Myeloma and tried unsuccessfully to do a Bone Marrow Biopsy.  My twin sister and I then searched for a Myeloma specialist in the area.  Fortunately, we found one located at the University of PA who did the biopsy with no problem, and confirmed the diagnosis.  Hearing that I had cancer, and that the prognosis at that time  was only 3-5 years, I just about went into shock and was paralyzed with fear! 

That’s when my twin sister stepped in and took over for me.  Although she was also devastated, she knew that I needed someone to help me learn anything and everything that I could about this disease.  I needed someone to help me figure out what to do next and where to go to get answers.  It wasn’t as easy as it is today to find information about this disease, as it was so rare back then.   She spent hours in the public library, medical library as well as on the internet.  After weeks of researching day and night, she finally found an organization that dealt specifically with Multiple Myeloma.  That organization was the International Myeloma Foundation (IMF).  We finally felt a sense of relief that we weren’t alone, as they were able to provide information about the disease as well as some advice on what questions to ask my doctor, etc.  Not only did my sister go with me to every doctor’s appointment, taking notes and having a tape recorder running so we wouldn’t miss a single word, but she asked many questions as well because she felt that knowledge was power. 

As I was still relatively healthy, and I was lucky enough to have an identical twin sister, I decided to have a bone marrow transplant with her as my donor.  I spent eighteen days in the hospital while my sister took a room at an adjoining hotel so she could spend day and night with me.  In addition, while I was recovering, my sister even attended one of the IMF’s first doctor/patient seminars, and walked away from that with so much information that she was able to bring back to share with me. 

Although I have been through many ups and downs throughout the years, sustaining many surgeries, I try to stay positive and live a full and active life.  I also try to live a healthy life style through diet and exercise.  Two of the things that keep me busy are my interest in the Philadelphia Multiple Myeloma Networking Group which I helped to organize over 20 years ago.  In addition, I also help to coordinate the “Miles for Myeloma Walk/Run”  which has helped to raise over $1,000,000 throughout the nine years that it has been in existence going  toward  myeloma research and education.

Back at the time of my diagnosis in 1993, there were only two drugs available for people with myeloma. Today, I’m delighted to say, through research, there are now many new drugs available offering patients so many options, and hope which  has been able to extend the lives of Myeloma patients everywhere.