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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • VinnieCent moderator
    1 month ago

    @cindyc all of this is so inspiring and encouraging. “I am no longer a 5th grade teacher I am a Myeloma Teacher”. I can feel the sparks flying from coming to that realization. Thanks for being here and for sharing.

    With much gratitude,

    -Vinnie ¢ ¢ ¢ ¢

  • VinnieCent moderator
    1 month ago

    @cindyc all of this is so inspiring and encouraging. “I am no longer a 5th grade teacher I am a Myeloma Teacher”. I can feel the sparks flying from coming to that realization. Thanks for being here and for sharing. I’m just gonna CC my good friend here: @sasplundh.

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