The Long Run: Navigating Uncertainty One Mile at a Time

Indiana Fan at the Peach Bowl

My name is Cathy Zimmerman, and I am a new IWMF Support Group Co-Leader for the Colorado/Wyoming (CO/WY) area.

I often condense my medical history into a WM elevator pitch: “I was diagnosed in 2019 after having low blood counts and anemia, later confirmed by a bone marrow biopsy. I went through six rounds of bendamustine & Rituxan (B&R), followed by four months of Rituxan only, and have been on watch and wait since completing that treatment in 2020.”

But my story isn’t that simple. Before my diagnosis of Waldenstrom macroglobulinemia, I had my annual checkup with my primary care physician (PCP), and the next day, flew to Chicago for my high school reunion. After checking into the hotel, I listened to my messages, and there was one from my doctor that went something like this: “You need to go check in to a hospital right away.”

My husband, John, was at home in Denver, and he tried to get to the bottom of this with the after-hours line. He didn’t get much more information other than it had to do with my bloodwork. We weighed the idea that I check into a hospital in Chicago, but decided I should fly back to Denver instead. Little did I know or understand at the time, my white blood cells, red blood cells, and hemoglobin were all well out of normal range. I barely knew what those things were!

Cathy, Cayla, and John in Italy

Upon flying home the next morning, I went straight to the hospital affiliated with my PCP. As I was led to the first floor, I saw the sign “Oncology.” Well, I knew what that meant, but I couldn’t possibly have the C-word. I asked why this floor, and I distinctly remember being told that was where they had an open bed. I was so naive!

Note to Self #1 – Don’t believe everything they tell you.

Since nothing happens at the hospital on the weekend, I was scheduled for a bone marrow biopsy the following Tuesday, which confirmed the diagnosis of WM. John and I were supposed to go to Italy with our daughter at the end of the following week, so instead of starting chemotherapy right away, I got two blood transfusions and hopped on a plane to Italy.

Note to Self #2 – Don’t hesitate to voice your needs to a doctor.

I was comfortable with the general hematologist assigned to me in the hospital, so when I returned from Italy, I went through six months of B&R. I was three months into Rituxan maintenance when the hematologist left for Kaiser. Because insurance companies control our lives and most healthcare decisions, I was unable to follow him. I made my next appointment with his replacement in that office. That doctor was an hour late to the appointment and was not familiar with my prior treatment. After spending 19 minutes with me and charging me for 45, I decided to call it quits.

Note to Self #3 – Don’t be afraid to find a new doctor.

John and I had a meet and greet with Dr. Peter Forsberg and were sold, both on his compassion and knowledge, and that he had reviewed all my labs before I came for the appointment! When he moved his practice to the Colorado Blood Cancer Institute (CBCI), I followed him like a band groupie and have been with him ever since.

Note to Self #4 – Be your own advocate.

Julia, John, Cayla, Cathy and Joshua

Because I didn’t look sick, I was able to keep my diagnosis and treatment from basically everyone, except, of course, my children. Looking back, I think perhaps this was also a form of denial. My youngest, Cayla, was a senior in high school, and I wanted to keep up the appearances that everything in our world and her world was status quo.

Having WM is anything but continuing the status quo. Some days I am optimistic that I could be on watch and wait for a long time—riding along on an even keel. Then things get a bit bumpy; uncertainty creeps in right before having bloodwork, and I have that same uneasy feeling I had being led to the oncology floor.

In 2021, I caught a severe case of COVID and was hospitalized for close to two weeks. I did not know at the time how serious it was, and needed supplemental oxygen after being released. John and my son, Joshua, went into action and converted our dining room into my makeshift bedroom since I was unable to do stairs. I had a big oxygen tank in the laundry room when I slept, and I had a small travelling one I could use outside the house. But I didn’t want to go trudging around the neighborhood with the portable green tank, so we literally drove to the next neighborhood two-tenths of a mile away to begin my rehab. When I started rehab, I could only walk one-tenth of a mile—hardly worth the drive over. Gradually I was able to add more. By early fall, I took my bike out for a short ride, which led to my next goal.

Chicago Marathon Finisher

My lifestyle changed significantly as I navigated the uncertainty of WM and the aftermath of a serious bout with COVID. Having never run anything longer than a 10K, I decided to tackle something big—a half marathon. I mean, why not? That way, I reasoned, I could be assured that my lungs were clear from COVID, and I wasn’t anemic from WM. My family trained with me along the way: in June 2022 John, Cayla, and I biked the 60-mile Elephant Rock Ride, and then I ran the Chicago Half Marathon with my older daughter, Julia, in September. Since then, I have run a race each year, including the Chicago Marathon in 2023! Although I couldn’t rope in anyone from my family for the marathon, I certainly had enough company with the 50,000 other runners!

This year, I am training for a 64-mile bike event in Colorado with John and Joshua, and I plan to run the Chicago Half Marathon two weeks later, getting a much-needed boost from the lower altitude. I do not think of WM when I am running, but WM is exactly what keeps me running!

Cathy at the Elephant Rock Ride

I know that none of this would be possible without the support of my three children and my amazing husband. Their positivity, dedication, and being by my side is truly how and why I was able to get through the WM diagnosis and treatment and COVID. John is deeply committed to IWMF, devoting time to the Finance Committee and serving on the Board of Trustees. He goes to every doctor’s appointment with me and has learned the lingo for all the different blood tests.

Note to Self #5 – Appreciate the people who have helped on the journey.

For me, IWMF has been a support system like no other. After attending the Ed Forum last year, I was encouraged by Shelly Postek at IWMF, Robin Tucker (my co-leader), and Jane Cox (Support Group Leader for VA/MD/DC) to start a Virtual Support Group for the CO/WY area. We have had four virtual meetings so far, and Robin and I will also be taking over for Bill Bass, who has chaired the in-person meetings for many years. We are so grateful for the solid foundation Bill has built here in the CO/WY area.

While we all have slightly different stories on how we arrived where we are in our WM journeys, when our support group meets, we are no longer walking onto the oncology floor alone; we are facing our shared challenges together.