How did you get involved with MMRF?
After being diagnosed with multiple myeloma and not showing improvement from at least four different courses of treatments, I was given a medication to treat my disease because of my expert medical team’s knowledge of a drug that was originally used for leukemia. If it wasn’t for research, their expertise and ongoing discussions with colleagues, this medicine would never have been recognized for treating myeloma. It worked! I was showing data that my aggressive form of myeloma was finally responding to a treatment. Before being diagnosed, I wasn’t even aware of the fact that people didn’t always respond to certain treatments. This opened a new light in my thinking. Imagine if there was no research! We need new forms of treatment, and the only way to get this is through funds to employ scientists and expand research to find new methods of treatment. MMRF helps provide this kind of research so that we can reach more people who have myeloma and give them a fighting chance.
Why did you choose to participate in the MMRF Walk/Run?
I want people to look at me and be inspired by the fact that if they see me participating in the MMRF Walk/Run they can persevere as well. Perseverance is needed to meet goals so they are more than just dreams. If I am visible to others, there can be hope for so many people to live a life with quality after an myeloma diagnosis. My Multiple Myeloma Specialists at Tampa General Hospital (in particular Dr. Borrello and Jen Hanle) have supported me so much throughout some of my most difficult moments in time. It is directly related to their involvement with the MMRF Walk/Run that I choose to be involved in. I want to give back to them in any way that I can and thank them by living a life with meaning. Supporting their efforts to raise awareness and funds for research through MMRF’s Walk/Run is one way that I can say thank you and support them. Some people may know me or see photos of me during my myeloma journey. They could see me in photos during my difficult time with challenges such as using a walker, wearing a patch on my eye, wearing an orthopedic collar on my neck, and seeing me now able to Walk/Run in this event. To see me smiling and grateful each day I awake and actively participate in the world around me can be an inspiration and motivation to keep going. I can reach more people during this event than I ever thought possible.
The Spirit of Hope is given to individuals/groups who inspire hope and show extraordinary commitment to the MMRF. What does being given the award mean to you?
Being given the honor of The Spirit of Hope is a way of telling me I am doing a good job inspiring others along this journey to persevere with hope. It will help me to persevere and to continue to motivate others who have been affected by myeloma.
Please share any stories that have given you strength.
When I heard my diagnosis for the first time, believe it or not, I felt a sense of comfort. Perhaps it was because my dad was diagnosed with myeloma several years ago, and I knew that he led a good life for quite a while despite it. I also knew a little bit about the disease, and that felt a little less scary than the menu of other options that I didn’t know as much about. I tried hard to focus on the fact that in the time my dad was diagnosed until the time I was diagnosed, so many new treatments were discovered. If this was the case, then I had to focus on how many new treatments were going to be found in my lifetime. Maybe there would even be a cure.
I also felt deep down that this was not my time for my family and me to mourn but rather to rally and persevere. Yet, my family (although the best supporters of all time) were secretly mourning me. I saw it in their eyes. This was the most difficult obstacle for me to see, even more than the treatments that weren’t working or the pain that I endured. How could I change that? I needed to change their response from supporter to believer. They needed to believe that I could pull through this with the help of a superb medical team, research, resistance to the temptation to give up, and a little luck.
During my professional life my role in the New York City School System was to give strategies to other teachers and principals to put forth their best work and make changes for the better. I was a coach. I motivated others and gave them methods and strategies to help them achieve their goals. I realized I could do this with my illness. Now was my time to teach others that if I could have the strength to persevere until I reached success, perhaps they could too. This wasn’t always easy because my data did not always show improvement. There was evidence that I was not in a good place for quality and survival at different points after my diagnosis. I refused to show the world that I was merely a statistic. I remembered a strategy I knew that could be used in persevering for success. Dress like you already are a success, and play the role you want to be. I was determined not to look like my data. I would wake up, and most mornings, I’d start to feel more comfortable when I saw my image in the mirror. I was dressing like I already reached my goal — remission. Mornings were my time. The sun peeping in was and is a sign of hope to me. It is my reminder to get up and do something positive for myself and for those I love. Walk. Stretch. Be creative. Cook a new recipe. Read. Dress in your best clothing. Do something that helps someone else. I did it all. I’d walk to my closet and find my best outfit to wear. I dressed like I was enjoying a quality life.
When I was told I had to isolate, I kept thinking how fortunate I am for finally qualifying for my stem cell transplant and for living in a time with technology such as FaceTime and Zoom so I can continue to see the people I love. As I showed the world my response to myeloma, they began to respond similarly. They believed I could persevere. It fed on itself. At the same time I was doing this, my treatment plan was changed many times. Finally, there was one that was beginning to show improvement towards a positive outcome, which in turn gave me even more of a positive outlook.
Some people believe in blind faith. I believed I needed to sift out negative thoughts and show the world my positivity. Demystify cancer! Demystify chemo! I began going outside with a bald head dressed to the nines. I remember being told that some people are beautiful with or without hair and I was determined to show the world this is true. I felt a different kind of beauty. This was a beauty that people needed to see. It comes from your inside and radiates into the world like sunshine. I kept saying to myself, “I want to show people that we must celebrate life every single day and find things to be grateful for. I have many things to be grateful for — a husband, daughters, grandsons, true friends, hobbies, and a career I love. I must show the world who I am. I am not just a statistic. I am not a box of cookies with an expiration date. I am a person living a purposeful life.
I may not be able to change my diagnosis, but I can change my response to it. Maybe that will help others to change their response as well.
