A Silver Lining from an Island Diagnosis: A Myeloma Patient Story

When Russ was diagnosed with multiple myeloma in September 2020, he was living on a small island called Saipan, where he had planned to spend the rest of his life. He enjoyed his time wind sailing, surfing, and spending time with his wife and children.

Russ has recently returned from a recent trip to New Zealand, where his trip has left him a little more than fatigued. Later, when biking with friends, he realized he was being left in the dust (something new to him as a competitive endurance athlete). He decided to go to the doctor. 

Living on a tiny island, the medical facilities are little more than triage care, certainly without a myeloma specialist in sight. In fact, the original misdiagnosis that Russ was given, due to his symptoms, was that he had allergies and needed an inhaler. 

Obviously, an inhaler does little (nothing) to treat multiple myeloma, so Russ continued to return to the doctor and be misdiagnosed with one thing after the other as his symptoms worsened. Eventually, a physician friend from another island encouraged Russ to get some blood work done after hearing about the months of persistent and concerning symptoms that had begun to affect Russ' quality of life. 

Russ knew it was time to get off the island when his blood work showed high creatinine levels. An internist had detected lesions on his recent CT scan and had warned Russ this might mean cancer. Medical treatment was now needed elsewhere.

Russ began his journey to Hawaii. The flight took place in peak COVID, and the severely debilitated Russ was stranded for weeks in Guam trying to arrive in Hawaii. At one point, Russ was worried he wouldn't be able to physically board the plane that would take him to the island. Thankfully, he was able to navigate the flight and after deplaning, headed straight to the ER of the Hawaii hospital. 

They were able to diagnose him relatively quickly with multiple myeloma. He began an induction treatment, and when he started responding positively, he headed home to Saipan. However, relatively quickly the induction therapy started working, and Hawaii doctors recommended that he head to California for further treatment, as no Hawaii facility can perform the stem cell transplant procedure, the current standard of care for most in myeloma treatment. 

Without a home, or much of a plan, Russ and his family headed for California. Thankfully, one of their friends informed them about the Affordable Care Act of California that allowed Russ (who was previously without insurance and panicking for their financial future), as a resident of California, to receive proper health care paid for by the state. 

Russ connected with HealthTree Coaches to prepare for his stem cell transplant and get guidance on how to live life with myeloma. He went through an outpatient stem cell transplant, had great results with little side effects, and got back to planning his normal life. 

When asked what he would share by way of advice with the myeloma community, Russ said, 

"[Myeloma] is not a death sentence, it’s a life sentence. You've got to live the best the life that you can. You have to look for your silver lining. No matter what happens at the end of this, you’ll never regret spending time with people that care deeply for you and that you care deeply for."

Two years later post stem-cell, Russ finds several silver linings and is grateful for every adventure he gets to have. Whether it's mountain biking with his buddies through Utah, snowboarding in his Taco Bell snowsuit, or enjoying a Sunday dinner with his extended family, he's determined to make the most of it. 

Wanting to find a HealthTree Coach to help you through your myeloma journey? Sign up for free: https://healthtree.org/myeloma/coach/

Curious about other patient stories? Read more here: Myeloma Patient Stories

Preparing for your own stem cell transplant? Get access to a comprehensive guide here: The ASCT Guide