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Myeloma patient and support group leader

Sue Massey shares her story of being diagnosed with multiple myeloma at a young age and how she discovered her path to peace. 

 

It’s been almost 10 years since I started my myeloma journey, and what a journey it has been! I have learned and grown so much. Ironically, I found more joy and gratitude on this path than before myeloma. It could be that myeloma forces you to choose. I could either be controlled by my circumstances and the related emotions, or I could embrace what God has given me, whatever that looks like, and live in that moment with thanksgiving. I chose the latter.


In 2013, when I was 42 with a 5-year-old daughter, I was diagnosed with high-risk monoclonal gammopathy of undetermined significance (MGUS). 


A year later, I had a surprise pregnancy and welcomed a baby boy.  In January 2019, I developed high-risk smoldering myeloma (SMM), which went active nine months later. Like my MGUS and SMM, my myeloma is high-risk.  


In October 2019, I started induction therapy of Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone (KRd) followed by an autologous stem cell transplant (ASCT) in March 2020, about 2 weeks before the COVID-19 pandemic occurred. Nothing like perfect timing with that! Because I am high-risk, my maintenance therapy is 3 years of KRd, which will hopefully be followed by only Revlimid in March 2023.


From MGUS to now, I’ve probably experienced every emotion and thought. What if something happens to me? What will my children do?   Who will watch them and take care of them? Why did this happen? Will I see my kids graduate high school? Why are other people recovering and doing better than me?  

Sue Massey's son, age 3, picks up sand
Sue Massey's son, age 3, digs in the sand.

For me, myeloma isn’t just a physical battle but a mental war. It was a cycle of my circumstances evoking emotions, and my emotions controlling my day. Good circumstances led to a good day, but bad circumstances brought on fear and sadness. The rollercoaster of emotions was exhausting. 


Finally, I had enough! So, I did a PIVOT (Prayer, Invest, Visualize, Others, and Trust). I “PIVOT’ed” my thoughts from being dependent upon my circumstances and from my emotions controlling me, to appreciating my circumstances (whatever they are) and finding peace and joy in the moment.   


I practice PIVOT daily to keep me on the right track and what a difference it has made! Don’t get me wrong – this was not an overnight switch.  It is a daily process with ebbs and flows. But over time, the better days win, and peace follows.


Prayer


While I always pray, I have shifted my prayer thoughts. My prayers now are more focused on “contentment in my circumstances” and “what can I do today to carry out God’s will for me?”  Each day is a new day, and each day, I imagine pressing a reset button. I just take the day ahead and focus on it. For me, living in the day is not easy. I do not go with the flow. I’m a type A person who likes to control my environment. But, by learning to focus on each day, I have gained peace and contentment.


Invest


I start my day by “investing” in God. That can be different things for different people. For me, it’s watching inspirational messages and participating in Bible studies. For others, that may be something else. The important thing is to find what works for you.  


Visualize


I visualize the Armor of God….no oceans and beaches for me! By knowing that I have His protection, I’m better able to withstand those myeloma curveballs. I know that He is with me and my family. Whatever happens, He has this, and I can do anything through Christ.    


Others


For me, it is so easy to get bogged down by “why me?” or the “shoulds” and “woulds.” But focusing on others really helped. I replaced the “why me?” the “shoulds” and the “woulds” with “how can I help?” and “what can I do to make the life of someone else better today?” The IMF was great in helping me start a support group for other myeloma patients who have young children.  


It’s a safe space that allows us to get together as there are different concerns when young kids are involved, such as school, daycare, activities, etc. But helping others can be different for different people. I feel the important component is shifting the focus off yourself and seeing what you can do to help others…however that looks.  


Trust


Finally, trust in God. Trust in the path.  It may not be what I want, but I trust that I’m in the right place at the right time. Sometimes, I don’t understand any of it. But I have learned to trust in those circumstances and appreciate what is given to me for that day. I have learned that I don’t waste my day waiting for my miracle. Instead, my miracle is right in front of me, no matter what the circumstances may bring. I do not have to wait for full healing, or to be MRD-negative, or to be 10 years post-transplant. Instead, God gifted me today, and that day is a miracle in and of itself.


By using the PIVOT process, I have truly gained peace and contentment in this journey. I learned to change the narrative of my circumstances and appreciate God’s will for me, in whatever condition I may face.  While I still feel my emotions, I don’t let them control me. I still have today and what a beautiful gift it is.  


Without myeloma, I do not know if I would have ever reached this level of gratitude, trust, and thankfulness.  


I will close with one of my favorite sayings — “Nowhere By Accident,” by Richard Halverson, former chaplain of the US Senate.
You go nowhere by accident.
Wherever you go, God is sending you.
Wherever you are, God has put you there.
God has a purpose in your being there.
Christ lives in you and has something he wants to do through you where you are.
Believe this and go in the grace and love and power of Jesus Christ.

About Sue

Sue has 2 young children. When diagnosed in 2013 with MGUS, her daughter was 5, and later that same year became pregnant with her son. Sue progressed to smoldering multiple myeloma in January of 2019 and active myeloma in October of that year. She had an autologous stem cell transplant in March of 2020. She is presently on maintenance therapy. She loves being with her children and cherishes her time with them.


Support Group Website

Strength Through Inspiration: A Virtual Support Group for Multiple Myeloma Patients & Caregivers who have Young Children


The content appearing in this blog post is not provided by the IMF, the IMF neither warrants nor guarantees the accuracy of such content. The forgoing notwithstanding, the content is not a substitute for advice and service provided by qualified and licensed medical professionals and should not be relied on with respect to any health matters. Any health-related information found herein is only made available as part of a general educational service.

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