A Myeloma Caregiver’s Journey: Barb Mower’s Practical Insights and Hard-Earned Advice

Caregiving for a loved one diagnosed with multiple myeloma is filled with unexpected challenges and complex decisions. Barb Mower’s story reflects the reality of caregiving with straightforwardness and resilience, offering practical advice for others on a similar path.

A Sudden Diagnosis

In February 2016, Barb’s husband, Chip, went to a doctor for back pain. Routine concerns turned critical when the doctor revealed Chip had “cancer of the blood.” An oncologist appointment and bone marrow biopsy followed immediately. The news was a shock, especially since Chip and Barb had been healthy and recently retired. Just months into retirement, they were in a whirlwind of appointments, decisions, and questions about their future.

At the time, they were living in an RV in Nevada, waiting for a mortgage approval to build a home in a place where they knew no one.

With one daughter on the East Coast for college and another planning a move to California, they were isolated from family. The diagnosis forced them to quickly evaluate where they should live, who they should inform, and how they would manage the next steps.

Facing Reality Together

Barb attributes Chip’s approach—“It is what it is”—as a foundation that helped them face his diagnosis. For her part, Barb took on the many responsibilities that came with caregiving, allowing Chip to focus on recovery. She put it to him bluntly: “Your job is to get better, and my job is to do all the rest.” This division of roles provided structure to an otherwise overwhelming situation.

With strong support systems in the Midwest and the East Coast, after hearing the diagnosis, the question became what state to live in. Chip had always dreamed of living in the West. Honoring that wish became even more important when so much else in their lives was disrupted.

Learning Quickly

Barb learned early on that not all information is useful, especially online sources that can create unnecessary anxiety. Instead, she sought out trusted professionals and resources. A Lucky Life Interrupted by Tom Brokaw offered a perspective she found valuable. She also attended a local support group, where a fellow caregiver’s practical advice on organizing records and understanding financial aspects was invaluable. 

One piece of advice—“Keep a sense of humor”—has stuck with her throughout.

Managing Challenges with Realism

Over the years, Chip faced additional challenging health issues. Getting through these situations required staying focused on what needed to be done. Building connections with their healthcare providers helps Barb and Chip make informed choices and manage complications effectively.

Practical Advice for Caregivers

Barb’s experience has taught her a set of key strategies for handling the demands of caregiving:

1. Watch the Handoffs: Do not assume facilities talk to one another - a shocking lesson for Barb. They encountered many dropped balls along the way. Stay on top of communication between healthcare clinics, hospitals, and facilities, politely asking if they received the needed documents or anything else. Align yourself with an advocate in the system who can help you.
2. Use a physical (along with a digital) calendar: Mapping out appointments and treatments helps caregivers and medical staff understand patterns and timelines.
3. Communicate directly: Telling people that Chip’s condition is terminal has often been necessary to expedite support from various services. While multiple myeloma lacks a cure, the term underscores the seriousness of his diagnosis.
4. Seek out help: Learning to ask for help was essential. Caregiving isn’t sustainable alone.
5. Go to the specialists: Barb believes in consulting multiple myeloma experts over general oncologists, especially for complicated cases.
6. Focus on one step at a time: Each day can present new challenges, and Barb has learned to handle each one as it comes.

Barb shares her story because, early on, a fellow caregiver’s guidance gave her clarity on what she was facing. Today, Barb wants to pay it forward by helping others gain similar insights into the realities of caregiving.

Finding Structure in Self-Care

Self-care has been important for Barb, particularly through maintaining connections with non-cancer-related activities. She found value in “The Five Minute Journal” app, which allowed her to capture small moments of gratitude and perspective. She’s also taken up hobbies like photography, video-making, and crafting, which provide a creative outlet amid the challenges of caregiving.

Barb and Chip also continue to find joy in life, especially around this holiday time, as they fill their home with special decorations, including their tradition of gnome Christmas pictures.  

Key Support Networks

For Barb and Chip, the team at Huntsman Cancer Center, especially Dr. Sborov, has been a constant source of support and expertise. Although they live hours away, Barb and Chip feel confident in their care team’s commitment and professionalism.

Barb’s story is one of realism and resilience. By sharing her experience, she offers other caregivers straightforward insights and a reminder that while the journey is difficult, it’s possible to navigate with clarity and purpose.

To learn more about Barb and hear experiences from other caregivers, watch the webinar below. If you don’t have a HealthTree account, you can sign up for free today to watch. 

What's Better Than A Casserole - Myeloma Caregiver Webinar