Mary Sage

multiple myeloma coach since 2020

Let's Chat! One time or more, I am here for you at whatever level needed. I enjoy texting and email and if desired a phone call or we can set up a FaceTime call. Mary Sage lives with her husband Michael who is her primary caregiver and is also himself a coach, her adult son Raymond, who is a secondary caregiver in the home, and 2 dogs, Stella and Jake. She lives in the Pacific Northwest region on an island accessible only by a ferry. She was diagnosed with Stage 2 IgG Lambda in November 2015 and placed on immediate disability due to spinal fractures, severe pain, and limited mobility. Like many others, prior to diagnosis, she experienced years of bizarre blood results and chronic back pain that was becoming increasingly debilitating. Mary had a stem cell harvest in 2016 and a stem cell transplant in 2019 and received 2 years of a strong response until her second relapse. In the past year she has become non-secretory, so her team uses new pain levels or increased pain levels to indicate tests that need to be run. PET scan and BMB are the primary tests used to track changes to her MM. Mary has been on 5 different protocols and treatments, has become refractory to 2 treatments and her record for using any one protocol seems to be 2 years then a change is investigated. Currently, her bloodwork shows standard risk MM; her MRD is positive with 5 parts per million. Her present maintenance treatment is Pomalyst (May, 2022). After 1 year on KPd, Mary's MM markers are now in range and she is able to say she is in a clinical remission - this is her year to move about more freely (although still cautiously) and enjoy a few more activities not afforded when her blood work showed progression. Mary is also trained in Hospice and grief support (since 2004). Mary welcomes any who might need Hospice Support for their journey or their loved ones. This work is done remotely and can include FaceTime or phone calls or any other modality as needed/desired. It is an honor to walk this journey with you during this challenging time.

Derek Johnson

multiple myeloma coach since 2023

I was diagnosed in 2019 at 34 years old, on my grandmother’s birthday. Though, symptoms were compounding for over 9 months. I had some cough and congestion that held-on for 1 1/2 months. Then I had extreme eczema on my hands which made it apparent my immune system was starting to go haywire. Finally, leading-up to diagnosis was extreme back pain and 1/2 hour long back spasms. Hindsight is 20/20. Obviously, I shouldn’t have gone 10 years without a blood test. With that in-mind, perhaps my Myeloma could have been caught sooner instead of 90% Myeloma concentration found at the ER with a subsequent 2 1/2 week hospital stay due to uncontrollable pain. Now, I advocate for anyone with odd symptoms to schedule a blood test as it could save their life! Though, it’s funny looking-back as my pup had regular blood tests… we’re educated that’s the best way to catch major health issues for our furry friends, right? My introduction to Myeloma and cancer was not gentle. I was kicked-into the fire pit. But thanks to close family support, my pup, and fortunately an A+ oncology team I’ve made it out the other side. As I was getting past the emergency phase and into the maintenance phase there were some real shockers. I learned that I was outside the normal age-range for this cancer. I learned nearly 6months after diagnosis that there is no cure. Thus, I’d be on cancer meds for the rest of my life. Finally, why would I need a stem cell transplant? I had a successful stem cell transplant experience in July of 2020. I’ll admit it was a rough ride, but the hospital food was beyond excellent and made it that much better. Having Cancer sucks. There’s no other way to put it. No one wants to receive news they or a loved one has cancer. Though, thanks to modern medicine, Multiple Myeloma can for the most part be kept under control and maintained. Sure, there may be some physical limitations due to cancerous effects on the body and/or side effects from medications. But thanks to new cancer medications, one can still live a life worth living with some alterations. Don’t allow this cancer to get the best of you…

Barbara Mower

multiple myeloma coach since 2023

My husband, a Vietnam veteran, was diagnosed in 2016. We had recently moved across country, so we knew no one. We live in a relatively rural area and have been treated by a local oncologist and a specialist at a cancer hospital 8 hours away. He underwent a stem cell transplant in 2016. Fortunately, the month after my husband's diagnosis, I met another caregiver with the same doctor and insurance company. She was kind enough to chat with me about finances, stem cell transplants, and navigating treatment remotely. My husband and I both benefited from her knowledge sharing and have endeavored to do the same when we learn of local patients. Our journey continues as he just came out of remission in August 2022.