The mission of the HealthTree Foundation is to improve patient outcomes by removing barriers to a cure. The HealthTree Foundation is a patient-driven, 501(c)3 non-profit organization that empowers patients with rare diseases at each step of their disease journey - from diagnosis, through education, care, and on to a cure using unique in-person and technical tools.
At HealthTree, we don’t just want to state our mission, we want to make it a reality. Today we are sharing how we have been able to empower patients through education thanks to donations like yours. Don’t miss our Giving Tuesday campaign on December 1st, 2020.
Here’s our HealthTree University curriculum coordinator’s myeloma story:
“I have told this story more than once, but I feel it’s worth repeating. Twelve years ago, I was a passive bystander on my healthcare team. I blindly followed the doctor’s orders without asking questions, doing my research, or seeking more than one opinion. Today I am an engaged partner in my care. My doctors and I work together to determine the treatment that is best for me. This metamorphosis from passive bystander to engaged partner took time and hard work.
Twelve years ago I was a 5th-grade teacher. Teaching has always been my passion. Teaching is one of the main things that give my life a purpose. The day I was forced to retire from my beloved profession because my myeloma was not cooperating was one of the saddest days of my life.
Prior to my cancer diagnosis, I'd been suffering from excruciating back pain. I usually just touched things out without seeking medical help, but this time since my pain was interfering with my teaching, I scheduled an appointment with an orthopedic doctor upon a colleague’s insistence.
Without ordering any imaging studies the orthopedist quickly diagnosed me with degenerative disc disease. I was prescribed pain medication and physical therapy. 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.
Unfortunately, my extreme discomfort did not improve with the various prescription medications I was prescribed. Additionally, the many sessions of physical therapy had little effect on my comfort level. My pain was progressively getting worse. An empowered patient would have returned to their doctor once again and requested more testing, but that wasn’t me back in 2007. I didn’t want to be a bother to my doctor anymore. 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 afternoon, after I had missed a scheduled faculty meeting, my colleagues found me asleep at my desk. They insisted I return to the doctor which I reluctantly did. At that appointment, I tearfully told my doctor once again about my pain and fatigue. For some reason this time he 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.
That's how I ended up sitting across from a hematologist learning about my cancer. I should have trusted my instincts and asked my orthopedic 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 treatment protocol and proceed with a stem cell transplant, which I did. Unfortunately, the transplant did not have the outcome that we all anticipated. My entire team hoped I would be in complete remission after the stem cell transplant, but I only achieved a minimal response. I was devastated and felt hopeless.
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 health care team and needed to educate myself so I could make informed decisions.
I am now an empowered team player. Patients who actively participate in their care experience better outcomes, fewer medical mistakes, and are happier and healthier. Dr. Tom Ferguson coined the term “e-patient” before his untimely death in 2006 (from, ironically, multiple myeloma) as someone who is educated, equipped, empowered, and engaged in their health and health care decisions.
My metamorphosis from a passive bystander to an empowered partner on my health care team did not happen overnight. First, I had to educate myself. The internet was my classroom and Facebook, Twitter, support groups and countless podcasts, webinars and teleconferences were my teachers. Once empowered with knowledge, 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 at least two questions. This was hard for me, but I persevered. Practice made things easier and discussions became more natural. I am no longer the passive bystander blindly following the 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.
Being an educator my entire life, it is only fitting that I use my passion for teaching to share what I have learned and continue to learn about the importance of patient engagement, available myeloma resources, advocacy opportunities, and the latest myeloma research to a new group of students – myeloma patients, caregivers, doctors and anyone who will listen. My classroom no longer is the one-story brick building on Pond Road, but the internet. I use various social media sites as my teaching tools. My personal Twitter handle is @MyelomaTeacher. I have close to 8000 followers and tweet daily. I am an administrator of the Philadelphia Multiple Myeloma Networking Group’s Facebook page. I also started my own Facebook page named Myeloma Teacher’s Multiple Myeloma Resource Page and have about 3,000 followers.
Myeloma CureTalks is an internet podcast talk show that features medical experts in conversation with a panel of patients about treatments under development. The person who was afraid to ask her orthopedist to take an x-ray of her aching back is now a regular panelist on this show asking myeloma specialists from around the world questions about their research.
Recently I became the curriculum coordinator of the Myeloma Crowd’s HealthTree University. Things have come full circle and I am back to doing what I have loved to do my whole life- teach. My audience may be different these days but my passion for helping others learn is still the same. I am honored to be part of this project.
Change is possible. I have learned how important it is to be an active participant in my health care and I hope you have too.”
Help Cindy and her team continue to educate myeloma patients by donating or sharing this giving Tuesday.
In order to learn more about HealthTree University, visit university.healthtree.org.
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about the author
Audrey joined the Myeloma Crowd as the Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.