From Passive By-Stander to Empowered Partner (Part 2)

A diagnosis of cancer is life-changing.  My family and friends insisted I seek a second opinion from a myeloma specialist, which is a doctor who only treats myeloma patients. I knew they were right, but I thought I would offend my local oncologist if I sought a second opinion from a specialist. I pushed beyond my comfort zone and scheduled a consult with a myeloma specialist that I found through a web search. This was my first step in becoming an empowered partner.

My myeloma specialist confirmed my diagnosis and I began treatment for my cancer immediately.  Sadly, my induction therapy stopped working after 3 cycles and a subsequent stem cell transplant failed to put my myeloma into a remission. I was devastated and felt defeated, but my myeloma specialist was hopeful. He suggested 3 treatment paths I could follow. He told me the pros and cons each option, but ultimately it was my decision as to which path to take.  It was that point I realized that if I wanted to make informed decisions about my cancer care I needed to educate myself.

From online lurker to engaged member

I joined an in-person myeloma support group that met monthly in Philadelphia and several online patient communities. The internet was my school and these online patient communities became my teachers. Initially, I was a lurker in the myeloma forums learning by following the informative conversations of others. In time, I contributed my new-found knowledge to the ongoing discussions. I continue to be a contributing member of several online communities 10 year later.

Additionally, I listened to webcasts and teleconferences about myeloma produced by the Leukemia and Lymphoma Society, the International Myeloma Foundation, The Multiple Myeloma Research Foundation, and Cancer Care. I also discovered that Patient Power, The Myeloma Crowd and CureTalks interviewed myeloma specialists about the latest myeloma research. I began listening to these broadcasts too! I attended local in-person myeloma seminars and would ask my doctors to explain things to me that I was having trouble understanding.

Joining the #MMSM conversation

I also discover Twitter. On Twitter, I was able to engage with myeloma specialists from around the world. I follow their discussions and read the journal articles they recommend.  Often they will grant patients open access to these publications. I ask questions about myeloma in general and the treatments in development. Myeloma specialists also engage with the myeloma community through TweetChats. The hashtag for myeloma is #MMSM.

I have evolved from a passive by-stander on my healthcare into an educated, engaged, empowered partner. I no longer hesitate to ask my doctor questions and enjoy participating in discussions with my healthcare team. I come prepared to each of my consultations with a list of questions I want answered. I ask about my treatment goals at each visit and if they are still being met. I know what treatment options are available to me if I relapse and promising clinical trials to consider.

I discuss with my doctor what he thinks are the best protocols to consider for future treatment. Having a long-range, but flexible plan is essential. I know how to read my lab values and the cancer markers to follow to monitor my response to treatment. I no longer blindly follow doctor’s orders. I ask why and how. I have learned that my doctor would want me to seek a second or third opinion when I have a treatment decision to make. I’ve become am an important contributing member on my healthcare team.

Finding my role as a patient advocate

Today, I use my voice to educate others about the lessons that I have learned. Since my myeloma was initially behaving badly, I was forced to retire from my teaching career. Fortunately, I have found a new classroom - the internet. I use social media to educate the myeloma community.  I am no longer a fifth grade teacher, but a MyelomaTeacher. Remember to educate yourself, find support, seek out a myeloma specialist and make sure your voice is heard. Empowered, engage partners have the best possible outcomes for their situation.

Read Part 1 of From Passive By-Stander to Empowered Partner.