Finding Hope with Others: My Multiple Myeloma Journey
Mindy
State: Virginia
Congressional District:
Diseases
Cancer
My Story
Finding Hope with Others: My Multiple Myeloma Journey
My name is Mindy C. Fast and I am an 18 year multiple myeloma survivor. Through my story, I want to share my experiences, hope and resilience to make someone else’s journey a little smoother and kinder, if only for a moment.
What was it like to get the cancer diagnosis?
Following an infection that was resistant to treatment and a few “extra” blood tests, the doc-in-the-box advised me to see a hematologist (that was OK!) / oncologist (not so good to hear). The diagnosis of multiple myeloma was in January 2007 and was followed by several “new normals” for my family and me.
What feelings did you go through?
Let the journey begin. What is myeloma? How do my husband and I tell and support my daughters (one finishing high school and the other in college)? How do I support my husband? Will I survive this? Who will be there to support me? What treatments will I need? Can I trust my doc to provide the best treatment for me? Who are all these strange people in the clinic? What about my friends? My co-workers? Would they treat me the same? Who will understand what I am going through? After letting the diagnosis set in, while I was ready to fight this battle, I did not realize what a challenge this would be. I was faced with so many factors out of my control.
What comes next?
It took lots of energy, questioning, researching and talking. I remained in the professional working world for over 13 years, sometimes walking from my office building to Massey Cancer Center (Richmond VA) for treatment and returning to my desk. One autologous (my own stem cells) transplant in 2008 followed within months by an allogeneic (my brother was my donor) transplant. Yes, I am now my brother! And thank goodness for my brother’s loving generosity. Seven years partial remission after transplants. What followed was hearing too many times that my numbers were stable followed by the news that my numbers were slowly climbing. More treatment regimens. I am forever grateful that these treatment options were available for me.
An emotional roller coaster took me for a ride as I moved forward. Some of my questions and fears were addressed, but new ones were constantly popping up.
2023 - after two years of a specific treatment regimen keeping my numbers stable, that tricky myeloma figured out a way to stump us again. Now what? CAR-T cell therapy? Bi-specifics? How grateful that I have options, but still anxious moving forward. I chose CAR-T cell therapy. Going for the “one and done”. The beginning of the CAR-T cell journey was a little scary and only a bit bumpy. But, well worth the effort to power through! Twenty-four months after CAR T, I am still in complete remission and living my best life!
Celebrations:
The best celebrations enriching my life that I never expected was witnessing my daughters become beautiful, caring, compassionate, strong professional women; becoming a mother-in-law; and then becoming a Grandmother! Include my glorious travel adventures in the U.S.and Europe Life goes on in beautiful ways. For this, I am grateful.
I cherished amazing inspiration, support and laughs from my dear family, my health care team, friends, and other myeloma colleagues.
Compassion and Support for Others:
What better way to share my experiences and values for compassion and service throughout the journey than advocating for someone to help them access resources, provide education, raise awareness and speak on their behalf? A handful of activities and others keep me connected to my community, bring me joy, impact others, and strengthen my resilience.
By completing several half-marathons to support Leukemia Lymphoma Society and walks for Massey Cancer Center, I raised funds for these organizations and increased awareness of myeloma.
Organizing and co-leading a local International Myeloma Foundation support group gives me the opportunity to empower, educate, share resources, and provide hope to patients and care partners and to my greater community.
Weekly volunteering at Massey Cancer Center allows me to share my story and provide hope to others.
Partnering with BMT InfoNet, I am able to support others on the verge of decision making for CAR T-cell therapy by sharing my experiences, thoughts, and asking questions.
Helping to form an International Myeloma Foundation M-Power community in Richmond VA. provides a forum to raise awareness about the increased risk of multiple myeloma for African Americans.
My favorite sayings during my journey have been “this too shall pass” and “it is what it is”. If I could use two words to describe my journey, they are HOPE and RESILIENCE. How can I make HOPE and RESILIENCE part of your story?
There is much work to be done to alleviate the multiple challenges faced by multiple myeloma survivors (a label I use at time of diagnosis) and their care partners. Can these challenges be within our control or eased a bit given accurate education, positive and smart health care policies, abundant resources, and clear communications? How can I best use my experiences to make the MM journey a little smoother and kinder for another survivor, if only for a moment?
My Motivation and Inspiration
I am inspired by others who have traveled a similar journey to me. I want to be able to give back to my community.
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