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Hope in Multiple Myeloma
Posted: Apr 21, 2023
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By Cindy Chmielewski, @MyelomaTeacher

What is hope?  Jonas Salk, a virologist who developed one of the first successful polio vaccines said, “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality.”  I couldn’t agree with him more.

After suffering from debilitating back pain that was wrongly attributed to degenerative disc disease for over two years, I found myself sitting across from a hematologist on a sunny July morning in 2008. I soon discover that the hematologist I consulted for my anemia was also an oncologist. It was during this consultation I heard the two words "multiple myeloma" for the first time. These words would forever change my life. In the blink of an eye, I went from the “kingdom of well” to the “kingdom of sick” as described in Susan Sontag’s Illness as Metaphor.

“How long do I have to live?”, was the first question I asked my community hematologist/oncologist after he delivered the news that I had an incurable blood cancer. Thankfully, he was very diplomatic. Instead of reciting the grim statistics that Dr. Google would give me a few hours later, he simply said, “I don’t know.”  He explained that because of the innovative research happening in this field his myeloma patients’ survival has greatly improved. He also described that there were many promising therapies waiting to come to market. That was all an optimistic 49-year-old needed to hear. Thanks to Dr. Grossman, I left my consultation feeling hopeful and not in despair.

Hope has been a big part of my cancer journey. Growing up in the age of “Doctor Knows Best” I tended to be a passive-by stander in my care. Being an educator my entire life I knew that knowledge was powerful, but I never thought to apply this learning to my own situation. By attending myeloma educational events I learned empowered patients tended to do better. It was at that point the light switch flipped on and I became an educated partner in my care.  The more I learned the more hopeful I became.

I retired from my teaching career when an autologous stem cell transplant failed to put my stubborn myeloma into a remission. I was devastated at the 100-day post-transplant visit when I discovered that my measurable m-spike did not budge from its pre-transplant value.  My myeloma specialist remained hopeful. He suggested options for me to consider including clinical trials. In 2009 many of the drugs that are now FDA approved for myeloma were in clinical development or a just a glimmer in a researcher’s eye. Fortunately, my myeloma began to respond to a three-drug combination that I selected.  In time I reached that coveted remission.

Retired and feeling better I needed to find a new purpose in life. As a science geek, I found myself tinkering in the field of research advocacy.  I was in my element attending scientific meeting, browsing poster sessions (which reminded me of science fairs) and learning about the many advances that were happening in myeloma research. I always left these meetings with a renewed sense of hope. I shared that hope with my followers via my @MyelomaTeacher social media channels.  Hope can help make a tough situation more bearable.  I wanted other myeloma patients to feel the hope that I was experiencing.

Over time my research advocacy led me to cross paths with Jenny Ahlstrom, the founder of the MyelomaCrowd, which now known as the HealthTree Foundation for Multiple Myeloma.  We became fast friends and attended many of the same events. In 2018, Jenny asked me if I would help her create an online University for Myeloma. I was hesitant at the beginning because I was not tech savvy and had no idea how to animate and upload videos on a website, but she assured me that I would have the support I needed. I agreed and became the Curriculum Director of HealthTree University for Multiple Myeloma.

My journey has come full circle.  Prior to my diagnosis I was a 5th math and science grade teacher empowering 10-year-olds with the tools they will need to be successful in life. I am now a “MyelomaTeacher” empowering individuals who are affected by myeloma to have the tools they will need to actively participate in making informed decisions about their care.

I have the best job in the world! After I write the scope and sequence for HealthTree University for Myeloma’s curriculum I talk to myeloma specialists worldwide at the scientific meetings I attend. Myeloma specialists are very generous with their time and never refuse to be interviewed.  My video team records their answers. These recordings eventually become lessons in HealthTree University with the help of my very dedicated production team.  As Jenny promised I didn’t need to be tech savvy.  I just develop the content and direct the production team on how to animate and illustrate the video lessons.  The team makes my visions come to life.   

Recently, I had another amazing opportunity as the director of HealthTree University. After completing HealthTree’s CAR-T Cell Therapy unit I had an idea.  The lessons in this unit explained the patient journey through CAR-T cell therapy from beginning to end or vein to vein as it said by the scientific community. I wanted to also follow the journey of the t-cell.  My inquiring mind wanted to know what happened to an individual’s T-cells after they left their vein to the time they were returned to their vein.

I mentioned this vision at one of the Janssen patient advisory board meetings I attended.  The folks at Janssen made my idea turn into a reality. I was able to take a tour of the CAR-T facility in Raritan, NJ.  Luckily, I am a Jersey girl and Janssen’s manufacturing facility was in my own backyard. When I arrived at the Janssen manufacturing facility the first sign I saw brought tears to my eyes.  It wasn’t big or gaudy, but its message hit home - “HOPE Produced Here”. The sign is designed to motivate and inspire Janssen’s internal employees everyday.

I am so thankful to all the individuals worldwide who dare to imagine what could be, and the courage to make dreams into reality creating HOPE.

P.S. I wasn’t allowed to take pictures inside the facility, but I assure you my HealthTree University production team will be able to make my vision of following the path of the T-cell come alive now that I know what goes on behind closed doors.

The author Cynthia Chmielewski

about the author
Cynthia Chmielewski

Cynthia (Cindy) Chmielewski is a professional educator and myeloma advocate. As a former teacher, she now teaches myeloma patients how to advocate for themselves as the Director of HealthTree University. You can follow her on Twitter @myelomateacher

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