Multiple Myeloma: No One Should Have To Face The Unknown Journey Alone

Multiple Myeloma

One year ago, I sat quietly with worry, next to my husband at his doctor’s appointment to receive the results of his bone marrow biopsy. We were in the middle of the COVID-19 pandemic, and I was given permission to attend the appointment…my gut said we were in for bad news.  Rewind to one year before the bone marrow biopsy.  My husband had a routine physical exam. It showed that he was anemic (low hemoglobin). He felt fine.  He had no symptoms. After additional lab studies and testing, a bone marrow biopsy was performed. It was time to receive the results.  

The doctor greeted us and escorted us to his office. The pathology report was already on the computer screen and while the doctor started with small talk, I quickly skimmed the report and read “malignant neoplasm”. My heart sank. I felt sick. I’m a Registered Nurse so I knew my gut was right, and from across the desk the physician said, “You have multiple myeloma. It’s treatable, but there is no cure”. 

I stared into the blank wall behind the physician and his image became dark and blurry. The doctor spoke for 30 minutes; it seemed like hours, and I didn’t hear anything he said. His words seemed muffled and like a soft whisper with the millions of racing thoughts shouting in my head. “I can’t believe this!  He is too young and healthy. What is going to happen to him?  Why is this happening?  We’ve only been married one year. I don’t want to see him sick with cancer. Is he going to die?  Don’t cry.” 

I’ve been a nurse over 25 years, and nothing could have prepared me for this. In situations like this, I think it might be a disadvantage to be a nurse. We have seen the worst and we tend to spiral into thinking worst case endings.  My husband and I left that appointment and sat in the car processing the news; contemplating how we will tell family.  

The last year following the diagnosis of multiple myeloma has been grueling. Too many tests and appointments to count, a bone marrow transplant, and hospitalizations for illnesses stemming from having no immune system. There have been more bad days than good days in this multiple myeloma journey.  It hasn’t been easy for him, for me, or for anyone who cares about him.

I have learned a lot about multiple myeloma, our health care system, my husband, and myself. I have witnessed a gap between the patient and their health care system. Health care providers are under the gun to see a high number of patients in a short amount of time which leaves patients confused and under-educated.

Everyone deserves to be provided with a wealth of knowledge about their own health and wellness so they can make informed decisions, and everyone should have a strong advocate to navigate through our complicated health care system. 

Perseverance has resonated over the last year. Without it, we wouldn’t have gotten this far. We researched multiple myeloma countless times, attended seminars, gathered data on treatment options, and repeatedly questioned his team of physicians. One even said, “thank you for asking so many questions, you’re keeping me on my toes!” 

Today, my husband is standing strong and continuing to face this multiple myeloma battle head on, and he is part of my inspiration for starting Wellness Strategies Group.

For more information visit the Multiple Myeloma Research Foundation https://themmrf.org/  Their goal is to find a cure for this cancer by conducting clinical trials and discovering new treatments.