Shifting Perspectives After a Multiple Myeloma Diagnosis

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community. 

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected] (mailto:[email protected]).) 

This week's blog was written by Ken Davis — a three-year multiple myeloma survivor.

Before being diagnosed with multiple myeloma, I led quite an active and somewhat spontaneous life. In 2021, two years before my diagnosis, I retired from my job as a manufacturer of integrated circuits and semiconductors. Like many people, I decided to spend much of my retirement traveling. I traveled often and enjoyed many a vacation locally and abroad: cruises to Canada, the Caribbean and Alaska; and numerous state and county fairs — whatever caught my fancy.

When My Active Lifestyle Suddenly Came to a Halt

All these trips came to a halt in 2023. At that time, I suddenly began fainting. I would collapse to the floor like a rag doll while still awake. Seconds later, I was okay. I could not understand what was happening. I’m usually a dynamo – raring to go. But at that time, I felt exhausted, and I just wanted to take a nap. I had no energy, no drive to do anything at all. My appetite was waning. Something was off. I had to go to the doctor. And I did.

I Was First Diagnosed with Anemia

Suspecting anemia problems, my GP referred me to a hematologist to treat my problem. Based on the initial blood work, my hematologist also believed I had severe anemia and arranged for a blood transfusion to increase my platelet count, followed by more tests. 

Awaiting prior authorization meant that the series of blood transfusions that I needed to improve my hemoglobin counts had to be put on hold for a few weeks. In the meantime, I was approved to resume traveling. 

I went on a cruise. When I returned from traveling to receive my blood transfusions, I learned that I had multiple myeloma — a blood cancer. I was told that I needed to immediately begin treatment.

Multiple Myeloma: What Is That?

After diagnosis, questions raced through my head: Multiple myeloma? What is that? Cancer? What are my chances? Can I be cured? I wanted answers to these and many more questions. Next, I read and discussed all I could with others about my disease.

How My Life Trajectory Shifted After My Myeloma Diagnosis

After my myeloma diagnosis, my world was restricted to doctor visits and testing facilities. Instead of possibilities, I was chained to testing and treatments. Of course, my anxiety was through the roof — the unknown was frightening. Instead of looking at things globally, I was forced to look at them locally. The disease commanded all my attention: no more travel, no more freedom to do whatever I wanted. I felt too tired to even go for a walk or go to the pool.

This was now my life. . .For as long as it lasted . . .

Yes, I chose to adhere to the treatment regimen: gladly! But my free-spirited view of life became restrained. Not just for now, but forever.

Each lab visit brought new anxieties: Are my numbers getting better? Why not? What can I do? I found myself always anticipating the return of the disease.

I would await the numbers to arrive. They were fine, except for one or two. . . “Yay,” I thought.

But then I would fixate on the two numbers that did not improve, no matter the reason. And I would fixate on the next test.

I would wait, research, and prepare for things to get better.

The More I Learned About My Myeloma, The Less I Feared

And they did get better . . . a little bit better each month. Then, they got a bit better after a stem cell transplant. I found the more I knew about multiple myeloma, the less fear I had. It was not that I was not anxious while awaiting results, but I just knew a bit of what to expect. 

I was still fearful of infections: I avoided crowds, stopped visiting friends and family, abstained from travel, and shopped only in the early hours of the day. Needless to say, I was masked and gloved everywhere.

How Undergoing a Stem Cell Transplant Affected My Immune System

Last year, I had a stem cell transplant, and things changed again. For the past year, I basically had no immune system: The stem cell transplant eradicated my immune system, and all my vaccinations since birth were no longer effective. As a result, my immune resistance was very low. I had to re-do all my vaccinations.

From Diagnosis to “Dormancy,” and What That Means for My Myeloma

My lab results have shown I have achieved “dormancy.” In other words, cancerous cells are not gone; they are merely inactive. They could awaken at any time. 

I began intravenous immunoglobulin (IVIG) treatment to help me fend off infections and boost my lowered immune system. Also, I have received most of my vaccinations over the past few months, with the exception of live-virus vaccines.

On the Road (and Sea) Again: I Return to My Travels!

It’s been two years since my initial diagnosis, and my life still revolves around doctors’ visits and treatments. Yet today, I can schedule them around some events I wish to attend. I have finally been allowed to resume traveling!

My main physical problem is that I still get very tired at times — especially by the fourth week following each treatment cycle. Mentally, the toughest part is having anxiety before each lab test. 

My mind still races: Will this be the one to indicate myeloma cancer has returned? Even if it shows good results, the feeling of relief is short-lived for me. After all, next month is another lab test . . . Maybe then, I won’t be as lucky.

Yet, I must share: I have managed to go on three cruises this year to Alaska, Canada, and the Panama Canal. However, I still cannot go to some densely attended events such as the Texas State Fair. With the uptick in measles and COVID cases, I cannot risk exposure to any of the MMR diseases. My body would not effectively fight them off. I’m hopeful that perhaps next year I can go.
At least now, I can plan for the future, which, as you’ve read, is much better than when I was first diagnosed. I will push through. I will make the most of my time remaining. I may still be a bit tired and fearful of infection, but I am not done yet. I believe more events and stories will definitely follow!

Taking a Page from My Friend’s Book

I had a close friend whose personal journey with cancer was over a period of nine years. He faced it head-on, doing his best to make the most of his remaining days. I was there when he was first diagnosed, and there at the end. His strength of will over the years went far beyond his gradually failing physical state — and he never let the battle consume him. I take my strength from his journey.

About the Advocacy Master Class

At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voices! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.     

This course is a comprehensive way for participants to raise their voices and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected] (mailto:[email protected]).

About Patients Rising   

Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To know more about the advocacy organization, visit PatientsRising.org (https://www.patientsrising.org/).