Lynda’s Story

I am an avid runner and started noticing some back pain in 2020 while training for a marathon. In May of 2021, I knew my body didn’t feel right, but I continued to train for races. That following September I had to walk the last three miles of a half-marathon because of back pain and muscle spasms. Several days later an X-ray showed a vertebrae fracture in the thoracic level of my spine. I was then referred to a sports medicine physician. An MRI was done which confirmed the fracture, and physical therapy was ordered for me. After seeing a spine specialist and having a CT scan, I was diagnosed with suspected multiple myeloma in November 2021. I was referred to a medical oncologist and after further testing, the suspected diagnosis was confirmed.

Multiple myeloma is a type of blood cancer that develops from plasma cells in the bone marrow. Plasma cells are white blood cells which produce antibodies that help the body fight infection. In myeloma, the plasma cells become abnormal and start to multiply uncontrollably. This can crowd out healthy cells in the bone marrow, making it difficult for the body to produce enough red blood cells, white blood cells, and platelets. This change starts a progression of medical issues that can affect the bones, kidneys, calcium level, etc.

My HR Director told me about ConnectCare3, a nurse navigation/patient advocacy service which is an enhancement to my medical benefits. I learned that I could be assigned to a registered nurse who would help me further understand my diagnosis and treatment options. She could also identify physicians with expertise in multiple myeloma and provide questions for my appointments.

I felt a flood of relief after my first conversation with a ConnectCare3 nurse navigator. My husband is very supportive, but having a medical professional helping me through the biggest health challenge I had faced in 54 years was a godsend. Not only did she provide all the assistance I noted above, she also attended many of my appointments in the following two years and provided written summaries. Having this detailed information to absorb in the comfort of my home days later was beyond helpful to my husband and me. My nurse navigator deciphered medical terminology unfamiliar to us and always followed up to ask if we needed further clarification on anything.

Multiple myeloma is not curable so treatment is based on the knowledge we can’t get rid of it, but we can slow it down. The first treatment I had was a combination of medications for 4-6 months to manipulate the immune system to fight the cancer and “knock it down” to a low/undetectable level. I began this immunotherapy in December 2021. I took medication for nausea and continued to work full-time. The back pain also lingered, but I relied on CBD cream as an alternative to oral painkillers. I forced myself to remain active by doing yoga most mornings, walking, biking, swimming, or Pilates. I tried to maintain a positive outlook and was determined to rid my body of the cancer.

The bones affected by the myeloma put me at risk for fractures like the one I had in my spine. My oncologist told me that a bone strengthener would be an important part of my treatment to decrease the risk of future fractures.

I knew the next major step was a stem cell transplant, and my ConnectCare3 nurse navigator was instrumental in identifying a well-qualified hematologist renowned for this particular area of expertise. Stem cell transplants replace cancerous, abnormal stem cells with healthy ones. That was performed in July 2022.

In September my hematologist informed me I was officially in remission. I cried tears of joy! I had to wait 30 days and then began a maintenance drug to help keep me in remission. I also walked a 5K race at a 12-minute pace in September. It was exactly one year to the day I had suffered the fracture in my spine and what a rollercoaster ride it had been!

Then in November, I learned that a CT scan had shown a large lesion on my sacrum, and I was told I needed radiation. The drive from work to get radiation was nearly an hour. My ConnectCare3 nurse navigator came to my rescue again and identified a very skilled radiation oncologist within a half-hour of my home, and ten radiation sessions were scheduled. On a more positive note, I ran my first 5K in a year and it felt so good!

A PET scan in late February of 2023 showed no cancer. The radiation was exhausting, but it had done its job. I still had some fatigue and GI issues and was told it could be months before all the side effects from treatment resolve.

In November of 2023, I told my nurse navigator about an upcoming multiple myeloma conference being presented by the hematologist who had done my stem cell transplant. We decided to attend together to educate ourselves even further on multiple myeloma and attended all the breakout sessions. I so appreciated her company and willingness to attend with me.

I am keenly aware that multiple myeloma can rear its ugly head again, but I refuse to let it get me down! I schedule a visit with my medical oncologist every three months so that any new developments can be evaluated, but I am back to running full-time and participating in half-marathons. I also do weight training to increase my strength.

I’d like to extend my heartfelt gratitude to my ConnectCare3 nurse navigator for her assistance the past 2+years. I would have been lost without her and will be forever grateful for her support.