Thursday, September 20, 2018

Profile: Judy Erdahl

This post is an installment of our profile series featuring participants, loved ones, advocates, and team members of the MBCproject. Thank you to all who have shared their voice and stories.

Today's profile features Judy Erdahl.

Q1. In your own words, can you share with us your reasons for joining the Metastatic Breast Cancer project (MBCproject)? 

I was thrilled to join the MBC Project. Cancer attacked me and I wanted to do something, anything to change how this disease affected me, my family and so many others. But, there really wasn’t much I could do. That is, not until the MBC Project came around. I was so excited to finally have the opportunity to contribute! To help! It felt wonderful to be proactive and aid in meaningful research. Research which was going to be openly available to others. If I have to die from this disease I at least want my experience and death to have some meaning. The MBC Project gives me that.

Q2. Please tell us what being a part of the MBCproject means to you.

The MBC Project makes me feel like I am part of something large and powerful. It's such a simple and easy thing to do, but the potential for change and influence in the world of MBC is tremendous. I love knowing that there is finally something I can contribute that will have real meaning. I also love that I have a choice in doing this. You don’t feel like you have many real choices when you are treating for metastatic breast cancer. It’s basically a choice between continuing treatment or going into hospice. They are forced choices. This was finally a choice I could make for the benefit of others and myself.

Q3. If you'd like to share, please tell us how it felt when you were diagnosed with metastatic breast cancer. 

Seven years ago, I was at work when my doctor's nurse called me. I had gone in for my 5 year check up for stage 1 breast cancer, thinking I was finally done, when they told me my tumor markers had doubled. After many tests and scans, the nurse was calling to tell me how sorry she was that I had metastatic breast cancer. The cancer had spread to my bones. I had walked into the copier room for privacy when I saw who was calling and I remember leaning against the wall and slowly sinking to my knees. The tears came and my heart sank. I knew what this diagnosis meant. As a mother, the first thought was "how will I ever tell my children?" You go through so many emotions; fear, sadness, anger, hopelessness. But, that's one thing the MBC Project has done for me. It's made me feel hopeful. I might not be alive to experience the outcomes this study will help spur on, but I feel hopeful that my small participation will make a difference in the life of one mother and her family in the future. It gives me a sense of control. Living with this disease you aren't given many choices. You're told when to do labs, have scans, what chemo to do next. This is the first time in a long time where I've been able to exercise my volition and have chosen to give my blood to someone for the sake of a future hope.

Q4. In a few words, can you please share with us your hopes for the future of metastatic breast cancer?

I'm hopeful that someday soon metastatic breast cancer will be a chronic disease and not a terminal one. I hope that when treatment is given it will be precisely tailored to a patient’s specific disease and will have limited side effects. Currently, even when a treatment has great outcomes, we often forget the cost in terms of side effects and what a patient has to endure and continue to endure to keep the disease at bay. I’m hopeful the data compiled by the MBC Project will be the seed a researcher needs to grow some meaningful research which will make a difference in the lives of MBC patients everywhere. I'm so grateful all of the data is shared and available to whoever needs it. It's tearing down scientific silos and putting emphasis on where it really needs to be, scientific cooperation and on the patients and their families who are dealing with the toxic effects of MBC.

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