From HealthTree University to HealthTree Coach: Shirley Cotton's Story

Shirley Cotton was diagnosed with MGUS in 2000. In the early days after her diagnosis, she was followed closely by a hematologist with labs 2 to 3 times a year. By 2016, she began experiencing back pain and fatigue. After 6 months of testing, she received her multiple myeloma diagnosis. She immediately started induction therapy, which is the initial phase of treatment aimed at rapidly reducing the number of myeloma cells in the body. 

Shirley has received 2 lines of therapy: 

• 12 weeks of lenalidomide (Revlimid) with bortezomib (Velcade) and dexamethasone, including an autologous stem cell transplant (ASCT). After this treatment, Shirley was in remission and received maintenance medication.
• After a relapse in 2022, she began treatment with daratumumab and hyaluronidase (Darzalex Faspro).

Shirley is now 71 years old and currently in remission and MRD positive.

Myeloma brings a new normal

In the beginning, Shirley's multiple myeloma diagnosis did not limit her activities, other than gastrointestinal challenges. But she has experienced some physical challenges in the last few years. "Physically, I am not as strong, and I don't have the endurance that I had before myeloma. So, I pace myself," Shirley shared with HealthTree. She takes time to schedule rest. 

Shirley has experienced bilateral knee pain, synovial cysts near her vertebrae, significant arthritis in her hips, knees, and neck, and some muscle aches. She says her cup is full but manageable. "The last 2 years, I have been living a new normal. I accept the activities I can do, and I also accept that there are some that I cannot do now or maybe never again. I'm okay with that. I live one day at a time being grateful to God for what I can do, and I just enjoy living!" Shirley said.

Finding HealthTree

A year after her ASCT, Shirley found a HealthTree brochure when she went in for her labs. She went home and immediately started watching HealthTree University educational videos. From one of the videos explaining our coach program, Shirley applied for a coach.

Her new coach helped her in many areas: 

• She gave her advice on gastrointestinal side effects.
• She encouraged her to be more aggressive when speaking with her doctors.
• Based on her coach's story, she set up several second opinions and eventually changed physicians and medical systems. She now feels like an active partner in her own treatment plans.

After her experience with her coach, she applied to be a coach herself to pay it forward. Being a coach has inspired Shirley. "It has encouraged me to continue to educate myself as much as I can so I can pass on to other myeloma patients what I've learned so they can feel comfortable being part of their own treatment team. Knowledge is empowering and healing at the same time." 

Shirley's advice on living with multiple myeloma

• Live one day at a time.
• Appreciate what you can do and what you can't.
• Consider joining a support group, and remember, if you attend one where the only conversation is complaining, you might consider moving on to another one. If you can't find one that's local in person, try one on Zoom. I attend a music therapy group for cancer patients on Zoom and really enjoy it! It's a way to express how you're feeling about what's happening to you in a different way and also a way to express how you feel when things are good or not so good by picking a song that mirrors your feelings. My group has an ongoing Spotify list we can refer back to at any time. Groups can be conducted differently, but you won't know unless you try.

Shirley lives by 3 "Fs"

Shirley shared with HealthTree her 3 "Fs" that she lives by:

Faith. I am a Christian, and I believe I am not in this struggle alone. Jesus loves me and gives me strength to survive and thrive.

Family. My husband is my shadow during doctor visits, lab work, testing, and treatment. I also have 2 brothers along with their wives and children who demonstrate love in their own individual ways that warm my heart and make me smile.

Friends. Each one has their own personal gift that they have shared with me on this journey. There's a great cook, a gifted crafter, a bible teacher/mentor, a winter hat maker, a storyteller, and a comedian who makes me smile. Best of all, these women pray for me and I am so grateful.

In one way, having multiple myeloma has enriched my life. I have become a coach for HealthTree and also a Blood Cancer Advocate with most of my advocacy centered around increasing awareness and educating myeloma patients, family, and friends. I have attended several cancer survivor and caregiver retreats with my husband and have met many kind and wonderful people who have enriched my life. Had it not been for myeloma, I don't know how I would have met them and been surrounded by people with great compassion and respect for others going through this disease. It's been wonderful meeting people who are living their lives and dreams in spite of their cancer.

Let HealthTree guide you on your myeloma journey

To find HealthTree University education videos, click HERE.

Join Cure Hub HERE and download your records to track your disease, see treatment options and side effect solutions.

Having support is vital. HealthTree coaches are experienced patients and caregivers who understand the importance of support from someone who knows first-hand what you’re going through. To find a coach, including Shirley, click HERE.