Multiple Myeloma: from Diagnosis to Dormancy
Ken
State: New York
Congressional District:
Diseases
Blood Disease, Cancer
My Story
BEFORE AND AFTER: how my multiple myeloma diagnosis changed my outlook on life
BEFORE DIAGNOSIS
Prior to my diagnosis of multiple myeloma, I led quite an active and somewhat spontaneous life. In 2021, two years prior to 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 travelling. I travelled often and enjoyed many a vacation locally and abroad: cruises to Canada, the Caribbean and Alaska; numerous state and county fairs; whatever caught my fancy.
This all came to a halt in early 2023 when I suddenly began fainting. I would collapse to the floor like a rag doll while still awake and seconds later was okay. I felt exhausted – I was usually a dynamo—raring to go!—but at the time 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.
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 iron infusions I needed had to wait a few weeks. In the meantime, I was approved to resume travelling. My iron infusions were scheduled to begin the day after I returned from the cruise but when I arrived I was informed that I had multiple myeloma—blood cancer. I was to begin treatment immediately.
AFTER DIAGNOSIS
Multiple myeloma? What is that? Cancer? What are my chances? Can I be cured? These and many, many more questions needed immediate answers. And so I read and discussed and searched all I could find on this disease.
Now my world was restricted to doctor visits and testing facilities.
Instead of possibilities, I was now chained to testing and treatments. My anxiety level was, of course, quite high – the unknown was frightening. Instead of looking at things globally, I was forced to look at them locally – the disease commanded all of my attention. No more travel, no more freedom to do whatever I wanted. 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 was now restrained. Not just for now, but forever. Each lab visit brought new anxieties – are my numbers getting better? Why not? What can I do? Always anticipating the return of the disease, I await the numbers to arrive – fine except for one or two….Yay? No…..I fixate on the two that did not get better, no matter the reason. And I fixate on the next test—I wait, research and prepare for things to get better.
THE AFTERMATH (SO FAR)
And they did…a little bit better each month. And a bit better after a stem cell transplant. I found the more I knew about multiple myeloma, the the less fear I had. Not that I was not anxious while awaiting results – just that I knew a bit of what to expect. 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.
This changed after I had a stem cell transplant last year.
For the past year, I basically had no immune system – the stem cell transplant eradicated my immune system and all of my vaccinations since birth were eliminated. I have a low immune system as a result. All of my vaccinations would have to be re-done.
My lab results have shown I have achieved “dormancy”—the cancerous cells are not gone, but are inactive. They could awaken at any time. I began immunoglobulin or IVIG treatment to help me fend off infections and boost my lowered immune system. I also have received most (but not all – no live virus vaccines) of my vaccinations over the past few months.
Two years after my initial diagnosis, my life still revolves around doctors visits and treatments…but now, I can schedule them around some of the events I wish to do. 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 hardest part is the anxiety I get prior to each lab test—will this be the one to indicate the 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…
I managed to go on three cruises this year to Alaska, Canada and the Panama Canal…I still cannot go to some of the 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 fight them off effectively. Perhaps next year I can go.
At least now I can plan for the future…better than when I was first diagnosed. I will push through – I will make the most of the 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!
My Motivation and Inspiration
I had a close friend whose personal journey with cancer was over a period of 9 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 through 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.
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