In the summer of 2005, my husband, Gary, and I took the vacation of a lifetime.
We spent three weeks in Australia visiting Sydney, Perth, the Great Barrier Reef, Wave Rock, and other landmarks.
Life was good.
Little did I know that the next two years would challenge my sense of control, forcing me to learn persistence, self-awareness, and acceptance.
It started with a minor fall in my backyard in the spring of 2006. In hindsight, this seemingly insignificant fall appeared to be a catalyst for what was to come.
By summer, I was experiencing a stiff neck and a “swollen” feeling in my head. I could not think clearly. I underwent both head and neck CT scans, a lumbar puncture, as well as several lab tests. One test was to determine whether or not I had contracted a parasite of some sort in Australia.
That autumn, after a visit to a walk-in clinic where it was determined I had a high “sedimentation rate,” I was referred to a rheumatologist. The rheumatologist referred me to an oncologist. In December, I was diagnosed with “monoclonal gammopathy of undetermined significance” (MGUS). After receiving little information about the diagnosis, I was told to return to the doctor’s office in six months or so.
This left me extremely frustrated.
The fatigue continued into 2007. I struggled in my job as a Human Resources Data Specialist for a local school district. I explored other possible diagnoses and started mental health counseling. I wondered, “Was this all in my head?”
Eventually, I was diagnosed with sleep apnea. Unfortunately, the usual therapy – CPAP treatment – resulted in severe nasal congestion and neck pain. I tried acupuncture and herbs, but obtained no lasting relief. Then I developed severe tooth pain that led to a molar extraction and subsequent severe infection. “What was going on? How much more of this can I take?”
By this time, I was constantly tired and desperate for answers. After getting lost on my drive to work one day, I had to start working only part-time. For this long-time dependable and conscientious employee, it was quite a blow.
During a return visit to the oncologist, I received no new information. I was told to return in four months. Looking back, I should have sought a second opinion, but I never considered I might have cancer.
At the end of December 2007, I returned to the oncologist in tears. Reluctantly, the oncologist suggested a bone marrow biopsy. I remember pleading for one.
On January 16, 2008, I received the biopsy results. The doctor walked into the dark and dismal office and calmly told me that I had lymphoplasmacytic lymphoma – not Waldenstrom’s, mind you.
I cried in my car in the parking lot and then drove home to tell my husband. That night, I called my adult son. I will never forget his reaction: “You have cancer?!?!”
I was scheduled to begin treatment a week later. However, treatment was delayed after I developed a 103.7 degree fever, a severe upper respiratory viral infection, and a nasty chronic cough – that WM cough – later diagnosed as cough variant asthma.
In March 2008, I started a four month treatment with rituximab and fludarabine. During this time, staff referred to my cancer variously as multiple myeloma, chronic lymphocytic leukemia (CLL), marginal zone lymphoma, and other names. I continued to feel frustrated and confused.
After treatment ended, I started feeling better. A month later, however, I developed a terrible case of shingles that affected my sciatic nerve. I now understood the pain of patients who contemplate assisted suicide. I wanted to die. My excruciating pain could be slightly tempered only by Lyrica and my husband’s application of prescription strength Lidocaine patches up and down my leg every 12 hours.
My work colleagues donated sick leave during what would be a 12-month leave of absence. During this period, I learned to accept the help of family, friends, and colleagues.
I spent a lot of time at home thinking about my ordeal and my future. As my husband was self-employed, my job provided our family’s health insurance. Our family needed my salary.
In February 2009, I resigned my position in the Human Resources Department. I returned to a less stressful job in the Accounting Department. We took a hit financially, but my health came first.
I continued to go to my follow-up appointments but lacked confidence in my oncologist. I felt there was more to my diagnosis. My research pointed me to the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). In the summer of 2010, I attended an IWMF-sponsored event. I, along with other attendees, heard from Dr. Steven Treon from the Bing Center at Dana-Farber Cancer Institute, and Dr. David Maloney from the Seattle Cancer Care Alliance. This was a turning point for me. During the question and answer period, I asked Dr. Treon, “If you have an elevated IgM and have been diagnosed with lymphoplasmacytic lymphoma by a bone marrow biopsy, do you have Waldenstrom’s?” I will always remember his simple answer, “Yes.”
I shared these findings with my oncologist, who looked me in the eye and said, “I disagree.” I felt like screaming, “But Dr. Treon is the expert!” It was time for a new doctor. I felt that Dr. Maloney would be a good fit.
In February 2011, I began work as a Payroll Specialist for another school district. I needed a fresh start and more responsibility. The fatigue had diminished, and I had confidence in my new doctor. Gary and I were once again enjoying trips to the Washington coast in our RV, and rides on our Goldwing motorcycle.
In the fall of 2013, my symptoms returned with a vengeance. I attributed it to stressful working conditions, but my lab work said otherwise.
I started solo rituximab and responded very well to this treatment. It was recommended that I continue with maintenance rituximab every other month for the next two years.
The challenge of working full time, medical appointments, and anticipated stress forced me to make the difficult decision to retire in January 2014. I was 62. Money was tight. Insurance was expensive, as I was not yet eligible for Medicare. However, we managed. I had to trust in what I felt was best for me to survive and thrive. I am glad I did.
Year-2 of rituximab maintenance led to continuous sinus and upper respiratory infections. I was on antibiotics for the year and ended up having sinus surgery. In late 2016, after coordination with my allergist/immunologist and oncologist, I started receiving monthly IVIG, which continues to this day.
Last year, my husband and I celebrated our 41st wedding anniversary. In 2015, we took a cruise to Hawaii and another in 2017 through the Panama Canal. Our scheduled trip to the South Pacific in April was postponed by COVID-19. Last year, we attended our son’s wedding in California. I also have enjoyed casino and road trips with my sister, Sandy. She supported me throughout my cancer journey. I got a new chair from which I watch the backyard wildlife. To remind me of the present moment, I practice daily meditation. I have learned to trust my instincts and the importance of advocating for my own health by reaching out for information and attending workshops and webinars, now Zoom meetings! Along the way, I have been to two IWMF Educational Forums and always learn something new! I have met some new “Wallie” friends. I look forward to traveling in the future.
I’ve learned to limit my weekly activities, accept help when I need it, and know my limitations. I’m adjusting to my new normal. I remain hopeful that Waldenstrom’s turns out to be a cancer that I am more likely to “die with than from.”
As the late radio broadcaster Paul Harvey would say, “And now you know the rest of the story.”
Kathy Horton, Everett, Washington, July 2020