Our primary focus at ASH as the Myeloma Voices team is to be just that. To bring the ASH experience and information learned to the greater Myeloma community, both locally, nationally, and globally. During ASH, we accomplish this in several ways: our Facebook Live with Dr. Joe, live Tweeting, and posting on Facebook/Instagram/LinkedIn. We vlogged, took footage of all aspects of ASH, and soaked in as much information as possible.

Oya Gilbert on Twitter
Yelak Biru on Twiitter
M-Power on Twitter

As we are all Support Group Leaders, our group members know that we attend ASH and know that we will bring back information to them, as well as our impact on social media. I returned home from ASH late Tuesday night, jetlagged, and worked steadily for the next three days to finish out the week. Our children had events in the evenings and I wanted to soak up as much time as possible with them, having been gone for a week in San Diego. My MidAtlantic Myeloma Information & Support Group Holiday Luncheon was on that Saturday, only 4 days after arriving home. I worried every day that I wasn’t able to take the time to digest and be able to adequately discuss ASH content with my group, who inevitably would ask for it on Saturday. Dr. Badros, a myeloma specialist at the University of Maryland, graciously presents to our group every January about the newest advances and information from ASH, but I knew I would be asked and WANTED to share information from such a great experience.

Saturday came, and my fiancée and I arrived an hour early to the meeting to set up. I knew I was expecting about 20-25 people to attend, including a new member of our group, whom I would be meeting for the very first time at our event. I brought a supply of IMF publications for distribution and the potluck of dishes that everyone helped to supply was all set. It was held in a beautiful restored barn, owned by a local Cancer Support non-profit, who generously donated the space to us for our event. The setting was beautiful. But still…I worried, will I be able to precisely present to my group on the scientific advances learned at ASH just four days before, and not yet fully absorbed.

barn with supplies
SGLs in a barn

In walks a new face, a woman who I assume is the new member joining us, and I go to greet her. She appears quiet, reserved, and terrified. After a little bit of an introduction, I learned that she has only been diagnosed with Myeloma ONE MONTH before this meeting. She was still awaiting her appointment with a myeloma specialist and had a second opinion already scheduled. She thanked me for inviting her to the event and quietly took a seat. Greeting other guests pulled me away from her for a bit, but as I glanced back in her direction, I saw that two members of my group and their care partners had brought her into their conversation and she was interacting with them. I went about my way, speaking with everyone who attended and sharing in our meal together.

My fiancée, who is an observer of all things, pulled me aside and told me that my two group members were talking with our new member about IMF resources and YouTube videos that helped them get through the initial diagnosis and education about Myeloma. He said to me, “Look how she looks more relaxed already.” I decided to create a bag for her with some IMF merchandise and publications appropriate for a newly diagnosed patient.

table with IMF accessories in barn
Patient staring at IMF booklets

I took the bag to her and quietly knelt down next to her and told her what was in the bag, and she looked up at me with a smile, and told me of the resources that the other group members had been discussing with her as well. Her shoulders were less tense, her brow less furrowed, and in general, she appeared much more relaxed than when she first walked in.

It was then that I realized: I don’t need to be stressed or worried that I don’t bring enough information back about the science presented at ASH quickly enough, we just need to be there for everyone, as our group always has been. They don’t ask about overall survival statistics on specific clinical trials, or results of this Phase 1 or Phase 3 trial. They want to know what’s next, what does this mean for me?

I took advantage of everyone finishing up their meals and getting their dessert plates and stood up and thanked everyone for attending. I introduced our new member and she was immediately welcomed with open arms. I then spoke about my experience at ASH and the information just flowed out of me. I spoke to the group about Quad induction, new trispecifics being studied, #downwithdex, DEI, “real world” data, IsKia, and as I did, more questions and conversations arose. The entire room was engaged and talked about how exciting all of this new information was and how we are so blessed to be in 2023 in the world of Myeloma. We talked about the hope that has come for myeloma patients with 19 new drug approvals in the last 20 years! We talked about how AI will help patients as a whole with myeloma in the future, including a perspective from a physician in our group who serves on an FDA panel. The point is, we just talked. And the conversation flowed effortlessly for three hours! We finally decided that we needed to wrap up, and start to get cleaned up and head out for home. As our new member left, she again thanked me, gave me a hug, and looked at me with bright eyes, full of hope and enthusiasm. I could tell we made a difference to her.

When we got in the car to come home, my fiancée discussed with me his observations about our meeting. He said that he always knew what I did for a living and that I was passionate about myeloma education and advocacy, but he never saw it in motion. He said that he observed what a group like ours and information like what we learned at ASH can do for a newly diagnosed and scared-to-death patient. He said, “Becky, your group and your information changed that woman’s life today.” Wow….anyone who knows me knows that the tears were flowing.

This is my “why”. This is our local reach for information from ASH. This is representative of the impact that we can each make in other’s lives with just information and support. I may not have presented graphs and statistics, but I presented HOPE, and our group made an impact. I will never forget this meeting, nor this patient. And as I attend ASH in future years, her face will be on my mind, as I listen to the education presented and review the posters. She will be my “why.”