I write about amyloidosis from time to time, as I did yesterday. So it is only fitting that my first “Patient Snapshot” features a multiple myeloma and amyloidosis survivor. But I’m getting ahead of myself…
Last spring, one of our readers asked:
I wonder if you could share inspirational experiences of the elderly. Folks that learned about the disease later in life (e.g. 70+) and were able to overcome the disease or live with it to make positive contributions. In your many travels I am sure you have heard lots of these…
I asked for reader participation, and I did follow-up with an inspirational patient story or two. But honestly, it wasn’t easy! Not that there aren’t many, many older myeloma survivors that fit this profile. They simply weren’t responding.
Why? Maybe some don’t see themselves as “elderly!” Others may have been reluctant to step-up and share their stories. After all, most of us would hang-back if asked if our lives were “inspirational” and/or had made “positive contributions.” And many from that generation aren’t spending much time on the internet. That’s why I started writing my books. For those who don’t spend their day sitting in front of a computer.
But for whatever reason, I wasn’t having much luck. So recently I started asking survivors with unusual or inspirational myeloma journeys that I met while speaking to support groups if they would consider sharing their stories.
I asked a few questions to get the ball rolling. And I would reassure them that their myeloma stories were interesting and valued–and this seemed to help.
Truth be told, the hardest part about all of this is getting these people to forward me pictures to go along with their narrative. Technology gets in the way again!
That’s the case with today’s inspirational multiple myeloma survivor named Roz.
Roz is an attractive, older woman; short and thin. She has four children, six grandchildren, and three great-grandchildren. Roz was diagnosed with both multiple myeloma and amyloidosis way back in 1997. To me, the fact that she’s still alive and well is inspirational!
But there’s more. Something that makes her exceptional as well. Roz has been in remission for almost 14 years!
14 years with no maintenance therapy whatsoever. That’s pretty amazing!
So how did Roz and her doctors achieve this ongoing feat? Roz underwent an autologous stem cell transplant (using her own harvested stem cells) in December of 1998. That makes Roz the most successful ASCT survivor that I have ever met!
Tomorrow I will let Roz describe her near-death experience back in the late 90′s in her own words. And with any luck, maybe I can coax a picture or two out of her, too.
Feel good and keep smiling! Pat