I’ve lived through four cancer journeys.
The most recent began in November 2020 with a diagnosis of multiple myeloma, but in reality the first signs appeared many years earlier.
In 2006, during a routine visit with my dermatologist, a biopsy of a cyst on my back showed abnormal lymphocytes. Because I had previously had melanoma in the late 1980s, I already saw my dermatologist twice a year for skin checks. After the biopsy results, I was referred to oncology to rule out multiple myeloma.
Standard testing followed: blood electrophoresis and a skeletal bone survey. The blood test revealed an M-spike, one of the key indicators of multiple myeloma. But because the disease had not yet fully manifested, I was placed in a category called MGUS—a condition where abnormal proteins are present but treatment is not started.
So we waited.
What none of us knew at the time was that I would remain in that watchful state for fourteen years.
Life continued, and in 2008 another diagnosis arrived—breast cancer. What initially appeared to be a small invasive ductal carcinoma led to more testing when my breast MRI “lit up like a Christmas tree.” After careful review by the tumor board, I chose to undergo a bilateral mastectomy.
During surgery, doctors discovered lymphoma in my breast tissue as well. Fortunately, the margins were clean and there was no lymph node involvement. After surgery, the only additional treatment required was a five-year course of aromatase inhibitors.
Throughout all of this, I continued regular oncology visits to monitor both my breast cancer follow-up and the MGUS. The abnormal blood markers remained elevated, but there was still no evidence of active multiple myeloma.
Then in 2019, I began experiencing persistent back pain.
At first I thought I had strained something while working in the garden. The pain would come and go, sometimes sharp enough to get my attention but manageable with Tylenol or, occasionally, tramadol. I continued working and staying active, though bending over sometimes triggered sudden twinges in my back.
Meanwhile, life continued to unfold around me. In 2020 my mother-in-law’s health declined, and after a fall we moved her from independent living to assisted care and eventually long-term care. She passed away later that year.
Around that same time, my back pain became impossible to ignore.
My primary care doctor ordered a CT scan that afternoon. Later that Friday evening, I received the call explaining the cause of the pain.
It wasn’t a kidney stone.
It was multiple myeloma.
The following week became a whirlwind of appointments: oncology consultations, radiation oncology, biopsies of the mass in my spine, and a bone marrow biopsy. The results confirmed the diagnosis—kappa light chain multiple myeloma, fortunately a slower-growing and less aggressive form.
Radiation therapy was used first to shrink the spinal mass, called a plasmacytoma, located around the T-11 and T-12 vertebrae. After ten treatments, I began induction therapy with Revlimid, Velcade, and dexamethasone.
Treatment was not simple. Revlimid initially caused a severe rash and had to be stopped. Other medications brought their own complications. Over time the treatment regimen evolved, eventually leading to apheresis to collect stem cells in 2021. I chose to delay the actual transplant while continuing therapy.
Today I remain in very good partial remission, with stable blood markers and a non-quantifiable M-spike. My current maintenance treatment includes Revlimid, Ninlaro, and dexamethasone.
But the journey has left its mark.
I live with neuropathy in both feet, eye complications from earlier medications, and ongoing digestive side effects. Even everyday activities like walking around the house or climbing stairs can be challenging. These changes affect not only me but also my husband, who has been my constant caregiver and partner through every stage of this journey.
Caregiving is difficult too. Every trip, every outing, and even simple daily routines must be planned around my health and the side effects of treatment.
Looking back, one question continues to stay with me.
Why did I live with MGUS and abnormal markers for fourteen years without treatment once the M-spike was discovered?
Would earlier intervention have changed the course of my disease? Could it have prevented the spinal mass or the nerve issues affecting my leg? Might it have reduced the long-term side effects of the treatments I now depend on?
These are questions many patients living with precursor conditions like MGUS continue to ask.
My experience has made me believe that we need to re-evaluate the standard of care for diseases like multiple myeloma. Earlier intervention and better research could potentially change the trajectory for patients like me.
Quality of life matters.
And patients deserve the opportunity to explore treatment options earlier—before the disease fully takes hold.
Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.