#CureChat: A Conversation About Patient Empowerment With Cynthia Chmielewski
Our recent editions of #CureChat have touched on the theme of patient empowerment. In our next chat, we sit down with one of our very own Precision Medicine Advocates, Cynthia Chmielewski—she is known as @MyelomaTeacher on Twitter—for a conversation about patient empowerment and clinical trials.
As many patients do, Cynthia learned the hard way about the importance of being an empowered and engaged patient, and she shares her story here in her own words:
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 had 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.
To learn more about Cynthia, please see her Facebook page.
T1. Cynthia’s story. In the first part of the chat, we’ll yield the floor to Cynthia who will tell us the story of her journey to empowerment 140 characters at a time. Then we’ll move on to the discussion to explore the following topics:
T2. What does it mean to be empowered?
- What does empowerment look like?
- Is empowerment a spectrum, or is it the same for every0one?
T3. Tips and tricks to being an empowered patient.
- What have you done to become empowered?
- What are some resources about patient empowerment?
T4. What is the relationship between empowerment and advocacy?
- What does it mean to be an advocate?
- Advocating for others
T5. Empowerment and clinical trials—what’s the relationship?
Please join us for this special #CureChat, Thursday, February 9th, 2017 at 1 PM Eastern.