Four years ago, my life took an unexpected turn when I was diagnosed with Multiple Myeloma, a terminal cancer of the plasma cells. If you were to talk to me about how I felt back then, my response would have been quite different from today’s. As each anniversary of my diagnosis approaches, I find myself reflecting on the journey and the profound impact myeloma has had on me. Despite the challenges and uncertainties that cancer brings, it has surprisingly brought about changes within me that I am grateful for. It has shaped me in ways I never imagined, reminding me of the resilience and strength within me.
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It’s not easy to open up about the struggles we face in life, especially when it comes to something as challenging as cancer. Despite being a cheerleader in my youth, always there to uplift others, I’ve been more of a pessimist than an optimist. Dealing with bouts of depression has been a recurrent hurdle, making it hard to see the light at the end of the tunnel. Battling against gossip and negativity has been an ongoing challenge, with the fear of imperfection weighing heavily on my shoulders. The pressure to excel in every aspect of life has been relentless, overwhelming me. I have attempted suicide many times over 46 years, but despite these obstacles, I fight each day, hoping for brighter days.
The specialists told me I had just a couple of years without a Stem Cell Transplant. According to the doctors, the transplant could give me five to seven more years. As I celebrate my fourth year, my outlook on life has undergone a complete transformation. Today, I proudly define myself as an optimistic realist.
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Dealing with myeloma, a terminal condition, has unveiled a newfound appreciation for the beauty in life. Despite grappling with the persistent presence of depression due to my bipolar disorder, my battle with myeloma has offered me a sense of purpose that I had never experienced before. I have learned to shield myself from negativity by distancing myself from toxic influences and situations. The opinions of others no longer have a hold over me. In this evolving narrative of my life with cancer, my focus is on embracing the positive and letting go of the negative, allowing me to savor every precious moment life offers me.
My journey has been filled with both challenges and discoveries. Throughout this time, I’ve come to appreciate the true meaning of family - those who have shown unwavering support when I needed it the most, contrasting with those who have been absent. While chaos used to fuel me, my battle with myeloma has nudged me to embrace rest. Learning to slow down and approach things at a gentler pace has become an unexpected but valuable lesson. Despite my health struggles, my capacity for hard work remains strong, and I often find myself outpacing even the healthiest individuals.
Multiple Myeloma has wholly altered the reality of my everyday life. My body has become a battleground where my bones, riddled with painful holes from myeloma, constantly remind me of their fragility. Some days, simple tasks like walking unaided or sitting without tears become monumental challenges. Despite my immune system’s noble efforts, viruses find me all too easily, and ongoing struggles with GI and kidney issues further complicate my battle. I have had to fight RSV (twice), COVID-19, pancreatitis, and numerous infections and injuries just this past year.
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Pain is a relentless companion, ever-present and unyielding. While I find solace in being a realist, accepting the uncertain inevitability of that final day, the weight of my illness extends far beyond myself. My husband, grappling with unspoken fears and the heavy burden of worry, navigates each day, haunted by the possibility of my decline. It’s a reality where conversations about death have become ordinary, bringing into sharp focus the fragility of life and the need to confront it with unwavering courage.
Living with myeloma is an arduous journey filled with challenges and uncertainties. However, amidst all the struggles, I find solace in embracing my inner child. Despite the weight of the illness, I am determined to keep the happy, fun, and energetic part of me alive.
Playing with my granddaughters and immersing myself in their imaginative worlds is a significant source of joy. Together, we embark on adventures to fight dragons and hide from monsters, explore magical places only they can perceive, and enthusiastically navigate obstacle courses. I happily indulge in imaginary tea parties, swinging on swing sets and sliding down slides, all with the same zeal as my granddaughters. In these moments, I am not just a grandmother battling cancer but a spirited playmate, proving that if my granddaughters can do it, so can Grandma, if only for a day.
Despite the challenges and the days it takes to recover, I enjoy building cherished memories with my granddaughters. My oldest is turning five this year, and I am lovingly called the “bestest, bestest grandma in the whole world” and affectionately known as the “silly grandma” for all the fun moments we share.
Whether I drive eight hours to watch a four-year-old play a 45-minute soccer game or fly across four states to babysit for an hour, I am fully committed to being present in every precious moment of their lives. My granddaughters fill my heart with happiness and joy, guiding me through each day with love and laughter.
Living with cancer has undoubtedly taken a toll on me, both physically and emotionally. My myeloma is currently stable, yet the aftermath of extensive chemotherapy is evident in the challenges that I face daily. Mornings are particularly tough as neuropathy and arthritis make simple tasks like using my hands quite a struggle until medications and exercises come into play. On some days, my husband steps in to help me get dressed, highlighting the ongoing impact of the treatment.
Despite these hurdles, my granddaughters bring me immense joy and respite from the harsh realities of my condition. They provide much-needed distraction and keep me grounded in the present. Interestingly, my battle with myeloma has given me a new sense of purpose. By becoming a myeloma coach and a patient advocate, I can support and guide other patients through similar challenges, turning my journey into a source of strength and inspiration for others.
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Myeloma has not defined me but has given me a platform to educate and inspire others. I lecture on navigating life with myeloma, sharing my journey to help others find hope and strength in their battles. I attend national conferences with top hospitals, hematology groups, and specialists.
Through two published heartwarming children’s books, I introduced young readers to the world of myeloma through my granddaughter's perspective, gently and compassionately spreading awareness and understanding. My ‘life, laughter and legacy” magazine, which I write twice weekly, is a space for sharing personal experiences, resources, and uplifting stories to create a supportive community for cancer patients.
In addition, through my two e-commerce shops, I raise funds for myeloma patients and research, aiming to make a real difference in the lives of those fighting this illness. Together, these endeavors allow me to channel my energy and passion into meaningful projects that benefit others and bring light to the darkness of cancer.
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Living with cancer has been a journey of constant learning and growth for me, particularly in navigating the complexities of myeloma. Thankfully, the ever-evolving landscape of myeloma research offers hope and progress, with treatments continually improving to help patients like me lead longer and more stable lives.
Through my online presence, I have unexpectedly risen to the status of a micro-influencer, not seeking fame but striving to offer a positive and practical perspective on life with myeloma to individuals worldwide. I take comfort in knowing that I am making a meaningful impact on others’ lives by sharing my journey and insights, making each day purposeful and rewarding in its unique way.