Cynthia’s Story: From Bystander to Empowered Partner #multiplemyeloma

Cindy HeadshotOur guest post today is a reprint of a blog post (originally published  in February 2015) from Cynthia Chmielewski, a multiple myeloma survivor and patient advocate. A retired teacher, Cynthia now teaches a new group of “students” — others who have been diagnosed with the disease.

Cynthia is on the board of directors of the Philadelphia Multiple Myeloma Networking Group and on the advisory boards of the Patient Empowerment Network and the Myeloma Crowd Research Initiative. She is a trained mentor, advocate and Patient Ambassador. Using social media to educate is Cynthia’s passion tweeting at @MyelomaTeacher and sharing myeloma resources on her MyelomaTeacher Facebook page. Cynthia was the co-founder of the #MMSM TweetChat. 

Join HealthiVibe March 2-3, 2017 in Philadelphia for The Conference Forum’s “Patients as Partners” conference where Cynthia will be one of our guest patient panelists. CEO Abbe Steel will lead a lively discussion with an amazing group of patients to discuss the drivers behind why patients may or may not choose to take part in clinical trials.

Cynthia’s Story

The first thing that my hematologist asked should have tipped me off. “Did you come alone?” It was a sunny July day six years ago. The next four words he said will forever be etched into my memory: “You have multiple myeloma.”

Prior to my diagnosis, I’d been suffering from excruciating back pain and fatigue, and often felt myself forgetting things. I scheduled an appointment with an orthopedic doctor upon a colleague’s insistence (I usually just toughed things out without seeking medical help). The orthopedist quickly diagnosed me with degenerative disc disease without ordering any imaging studies. My instincts told me to ask him, “How do you know I have degenerative disc disease? Could it be anything else? Maybe we should take an X-ray?” But I grew up in the era of “Doctor Knows Best,” so I didn’t ask my questions.

For the next two years I was treated with various types of pain medication and physical therapy. Unfortunately, my pain didn’t improve. It actually was getting worse. Nothing seemed to relieve my distress. I didn’t want to bother my doctor again. I thought I just had a low tolerance for pain. Instead of returning to the orthopedist and requesting more testing to discover the source of my extreme discomfort, I took matters into my own hands and managed to get through my day by consuming enormous amounts of over-the-counter pain medications. One day my colleagues found me sound asleep at my desk. They insisted I return to the doctor, which I reluctantly did.

At the appointment, my doctor decided to take an x-ray. The x–ray revealed that compression fractures in my spine were the source of my pain. I was scheduled for surgery to have the fractures repaired, but the surgery required medical clearance from my primary care physician, who in turn referred me to a hematologist when my blood work revealed I had severe anemia and a high sedimentation rate.

That’s how I ended up sitting across from a hematologist on a hot summer day, learning about my cancer. I never heard of multiple myeloma so I thought it couldn’t be that bad. Boy was I wrong. I didn’t really comprehend the seriousness of this diagnosis until after I went home and did some research.

I should have trusted my instincts and asked my doctor to take images of my aching back sooner. But back then I didn’t know that patients and doctors work together as a team. I didn’t think of educating myself about degenerative disc disease so I could have intelligent discussions with my doctor and ask questions about my treatment goals. My only discussions with my doctor revolved around my weekend plans, not my diagnosis.

Fighting myeloma has become the biggest battle of my life. My induction therapy stopped working after only a few cycles. I was extremely disappointed, but still very hopeful. My myeloma specialist recommended that I add a targeted therapy to my current treatment protocol and proceed with a stem cell transplant, which I did. Unfortunately this transplant did not have the outcome that we all anticipated – I only achieved a minimal response. I was devastated.

However, my myeloma specialist was hopeful and suggested different alternatives I could try. He gave me the pros and cons of each option and then offered his suggestion. Ultimately, it was my choice. It was at that point I realized that I was an integral part of my healthcare team and knew that educating myself would help me make the best decision.

My metamorphosis from a passive bystander to an empowered partner on my healthcare team did not happen overnight. First I had to educate myself, and then I had to practice speaking up and having my voice heard. I would challenge myself to engage in a meaningful discussion with my doctor at each consultation and to ask two questions. This was hard for me. It went against my upbringing, but I persevered. Practice made it easier and discussions became more natural. I am no longer the passive bystander blindly following doctor’s orders. I am an empowered partner. I feel confident in the decisions I need to make and I now encourage others to do the same.

I am now an empowered team player. I have learned that when patients actively participate in their care, there are better outcomes, fewer medical mistakes and happier, healthier patients. I am, what the late Tom Ferguson, MD, coined an “e-patient” – educated, equipped, empowered and engaged in their health and healthcare decisions.

The Leukemia & Lymphoma Society (LLS) has been an important source of my myeloma education. LLS has helped me educate myself so I can make informed decisions about my treatment options and has helped me to grow into an empowered partner on my healthcare team. Besides the Myeloma booklet and LLS Resources & Support pamphlet the patient access manager mailed me at diagnosis, LLS provides countless disease-specific patient education teleconferences, in-person education programs, monthly e-newsletters, live telephone support, in-person support groups, online forums and online chats. The First Connection program trains cancer patients to be mentors to newly diagnosed patients. Knowledge is power and with the help of LLS, I have become a powerful patient.

This July, I celebrated my six-year “cancerversary” and I plan on celebrating many more. I am currently in remission, but if I should ever relapse I now have the tools to engage in important discussions about my treatment options and to make informed decisions that will ultimately affect my future and the future of my family. I hope to teach others the importance of educating themselves, finding support and having their voice heard. I am confident a cure for myeloma will be found in my lifetime. With the help of LLS, I have found my voice.

Thank you Cynthia for sharing your inspiring story!

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!

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