March is Multiple Myeloma Awareness month and I was asked to write an article summarizing the past five years since my husband Todd was diagnosed and include the most important tip we learned along the way.
I spent the better part of my career writing for a living and with all the advocacy work we do for multiple myeloma, I foolishly thought this would be a piece-of-cake assignment. Over the past 30 days (and many nights) I have written and rewritten the article numerous times in my head. Each version focused on a different aspect of the journey and featured a new, must-have “most important tip.” I could not narrow it down to a single one-size-fits-all, most important tip because, as the name multiple myeloma foreshadows, everything comes in multiples with this disease. In the end, I opted to break the story down into key intervals with the most important tip we learned at each stage.
Todd was diagnosed December 26, 2017 -- yes, the day after Christmas! His orthopedic surgeon had ordered an MRI earlier in the month for some moderate back pain that we assumed would require a steroid injection. (Multiple myeloma often presents with back pain and low energy, something easily dismissed as related to being over 40. Todd was 52.) Instead of indicating signs of an aging back, the MRI showed lesions up and down his spine. The doctor, who looked at the report for the first time with Todd, announced, “There’s no easy way to say this. You have cancer. I’m not sure what kind, but my guess is either multiple myeloma or Stage IV colon cancer that has spread to your bones. You need an oncologist.”
We spent the next week hunting for any oncology office that wasopen and begging and pleading for the necessary testing, which ultimately determined it was multiple myeloma. (Pro tip, do NOT get an unknown cancer diagnosis between Christmas and New Year's when doctor's offices are closed.) In hindsight, the fact that local offices were closed was a blessing. It forced us to slow down, do the research, and ultimately helped us take the right first steps to find a true myeloma expert at the City of Hope, an NCI-designated comprehensive cancer center in Southern California. If we were forced to rank our tips, number one would be: to find a myeloma specialist. (If you need help finding a specialist near you, HealthTree offers a great specialist directory.
Multiple myeloma is a complex, rare blood cancer with different genetic types that vary from patient to patient. As if that was not challenging enough, over time your myeloma genetics can evolve and become harder to treat. This means that treatments that work well for one patient may not work for another, and treatments that work for you today, may stop working tomorrow. Studies clearly show that patients who see a myeloma specialist dramatically improve their chances of better outcomes. Most oncologists, even hematologist oncologists, across the United States only see a handful of newly diagnosed myeloma patients a year, they have limited experience with the intricacies of minor treatment tweaks and are challenged to stay up-to-date on the latest, extensive research. By contrast, a myeloma specialist is defined as a doctor who devotes all or more than 75% of his/her time to treating myeloma patients and participates in academic research.
For logistical reasons, including location, cost, and insurance coverage, patients may opt to see a local oncologist/hematologist for monthly appointments and treatments and seek the opinion of a myeloma specialist to direct their care at key intervals, such as initial diagnosis and relapse. This partnership approach has worked brilliantly for many patients across the country. We are fortunate to have good insurance and live close enough to City of Hope, that Todd has received his continued care and treatment with his myeloma specialist there.
The first year after Todd’s diagnosis included more twists and turns than we expected. We are type-A overachievers, planner people, who thought if we applied the principles we used at work, everything would go as we wanted, on the timeline we dictated. We had done the homework, Todd was being treated at a top cancer center by a renowned specialist, so we expected everything to be under our control. His myeloma missed that memo. Initial treatments evolved over the first months due to side effects and less-than-desired results. His stem cell transplant was delayed to allow time for radiation treatments that we had hoped to avoid. He did not earn an A+ for his day one stem cell harvesting collection score. He did not achieve complete response remission status immediately following his stem cell transplant. Things were NOT going according to our perfectly planned schedule, and we took every deviation as a setback or failure. In hindsight, we realized that not only were some of our expectations unrealistic, the timing changes turned out to be blessings in disguise. Thankfully our perfect plan was scratched and revised with a much better one. We hope others can learn from our mistakes and incorporate our second most important tip – be flexible and set realistic expectations, and revisit/revise those expectations as necessary. You will save yourself undue stress and be better prepared for the myeloma marathon if you talk with your doctor and have open and honest conversations regarding expectations and milestones for your specific case based on your disease and your overall health.
As working parents with one son away at college and another in high school living at home, we were in survival mode during the first year and a half post-diagnosis. We balanced doctor visits and treatments with work and home life and did our best to regain a level of pre-myeloma normalcy. When our second son left for college, and we became empty nesters, we started actively participating with various myeloma organizations and realized the unparalleled value those resources provide. Ironically, the first in-person HealthTree/Myeloma Crowd event we attended was held the weekend before the world shut down for COVID. (That’s us, arriving just in time for the last call.) I’m not overstating it when I say that one meeting changed the trajectory of our lives based on the connections we made and the information we learned.
We spent the early lockdown period watching HealthTree University videos, attending webinars, and engaging with myeloma specialists, advocates, patients, and caregivers around the world via Zoom. We became HealthTree enthusiasts – becoming coaches in their Myeloma Coach program and founders/leaders of their SoCal Myeloma Community support group, which now has over 900 members. Our third “most important tip” – get connected with HealthTree and other local myeloma organizations! We wish we had made this connection earlier, if for nothing else to learn tips from others who had traveled the myeloma road ahead of us. There is a shared comradery, understanding, and support that comes from connecting with people battling the same disease. Sometimes this community provides a shoulder to cry on or a safe haven to vent, but more frequently, it provides education, empowerment, and hope.
This past December marked the fifth anniversary since Todd’s diagnosis, and our desire to accelerate a cure has taken on even greater meaning. Todd’s myeloma remains in remission, but we feel like we are playing Beat the Clock. Fellow myeloma patient friends who were diagnosed around the same time, or even later, have relapsed. With this in mind, our fourth “most important tip” is – to give back to accelerate research for a cure. You can donate your data to real-world registries like HealthTree’s Cure Hub, participate in clinical trials that are right for you, or help fund research through donations and fundraising efforts. Multiple myeloma is NOT incurable; it just has not been cured YET. Your efforts to accelerate research and bring us closer to a cure will make a difference.
We are not sharing our stories and tips because we think we have all the answers. Far from it! Our hope is that others will learn from our experiences and incorporate what works for them on their own myeloma marathon. We close with one final tip – be grateful for the silver linings. There will be wonderful people you meet and uplifting experiences you will share along your myeloma journey. Be it other patients and their families, doctors, nurses, or staff, those connections were formed because of multiple myeloma. We encourage you to look for the silver linings and appreciate them for what they are. When you take something as bad as cancer and find a way to make something good come out of it, it is one more way you are beating myeloma.
about the author
Diane Kennedy is a care partner to her husband, Todd, who was diagnosed with multiple myeloma in 2017. She spent her career working in marketing and as a freelance writer. In 2020 she and Todd decided to transition from their professional careers to focus their efforts as patient advocates, Myeloma Coaches, and co-leaders of the SoCal Myeloma Community Support Group.
The Science and Art of Creating Your Personalized Myeloma Treatment Strategy with Dr. Murali Janakiram, City of Hope
Jun 13 / 18:00 PDT