Renewed Hope
I have not given up, but the reality of not being eligible for a new kidney was a tough blow. In early 2024, I consulted with teams of doctors about how to proceed with a treatment plan. I flew to Rochester Minnesota to meet with Mayo Clinic’s leading nephrology and hematology teams hoping there was still something we could do. As it turned out, there was! According to Mayo’s new research, smoldering multiple myeloma caused my kidney failure and was responsible for the relapse. By undergoing chemotherapy to eliminate the SMM it also eliminates the chance sFSGS will relapse after transplant! Unless Myeloma’s influence in recognized and treated, statistics reveal the likelihood of FSGS returning is nearly 100%, and the odds of the kidney surviving for more than one year is less than 1%. Mayo Clinic is ONLY institution to recognize the correlation between my kidney disease and multiple myeloma. Only with their co-treatment of these conditions and a living donor can I obtain long term success. Mayo’s unique, progressive and cutting edge treatment techniques have been used to transplant numerous others like me with overwhelming success.
With renewed hope, I started chemotherapy once a week at Fred Hutch. Every Monday morning, I performed 4 hours of hemodialysis at my home on Bainbridge followed by a ferry ride to Seattle for chemotherapy at Fred Hutch. On March 5, 2025, I received both blood test and biopsy results showing a significant reduction in abnormal plasma cells. We were very close to putting SMM in remission and getting back on “list”!
Several weeks after receiving the positive results, my hematologist at Fred Hutch put me on a new and highly effective chemotherapy drug that attacks my abnormal plasma cells directly. I am currently feeling OK, but all of the medication’s are starting to catch up with me. I rely on my hands for my livelihood but my fingers have lost strength and are often completely numb. Other side-effects involve exhaustion, gastrointestinal difficulties, muscle aches and joint pain, rapid deterioration of vision along with memory loss, confusion, and disorientation. I can feel my body and mind deteriorating.
Treatment strategies and side effects don’t tell the full story. Fighting disease is not just about our bodies breaking down, it is also about growth, finding happiness, understanding your emotions in response to disease, challenging your character and recognizing what’s really important to you. At the beginning of my treatment eight years ago I was depressed, ashamed and lived in a cloud of self pity, judgement and blame. As time passed and treatment became more challenging, my outlook on life began to shift. After all this time, shame has changed to empowerment, self-pity has morphed into self-compassion, and judgment has turned into empathy. If you face health challenges, remind yourself how strong you are. Find joy in the present moment, DONT WAIT FOR THE CURE. Share your story with others confidently. Listen. Use your life experience as a gift. Understand and empower others. Don’t dwell on what you can’t do, be proud of what you can.