Myeloma and the power of kindness
Diseases
Blood Disease, Cancer, Kidney Disease
Issues and Challenges
Richard has encountered: Rare / Underserved Disease, Invisible Illness, Underserved Community
My Story
In May 2021, I almost lost my life to kidney failure after a very late diagnosis of Multiple-Myeloma.
It was at the height of the Covid pandemic when I'd begun to feel poorly.
Over the course of a few months, I'd increasingly felt symptoms of spinal pain, shortness of breath, and the inability to hold urine.
The combination of my difficulty getting an appointment, overflowing hospital ERs, and my concern for contracting Covid created a long delay in obtaining care.
Eventually, the pain progressed to a level where I didn't want to live, but I was finally able to get an appointment at a clinic specializing in pain treatment.
Unfortunately, imaging revealed serious lesions throughout my spine, hips, and skull, such as to suggest metastatic cancer.
More imaging and blood testing were ordered.
After having my blood drawn and while literally driving to obtain additional imaging to determine the nature of my cancer, I received a frantic call from my primary to go directly to an emergency room.
It turns out that I was in acute kidney failure.
After a day and a half in the ER triage room, it was determined that I had multiple myeloma: which caused my kidney failure, spinal lesions, and severe anemia.
I was in very critical condition and faced a fight for my life.
The ER staff was able to treat me: so to save my life and kidneys.
All while juggling a department full of Covid patients and other emergencies.
Because of so many Covid patients, it took another day for a hospital bed to become available, but ultimately I was very fortunate to have world-class, effectively targeted kidney and myeloma stablizing treatment over the course of eight days so to have hope.
At diagnosis, I had less than 9% kidney functioning and Kappa Lightchains of over 43,000.
A normal level is between 3 and 19.
I was able to reach myeloma remission levels after being treated with a five drug induction therapy and an autologous stem cell transplant.
Additionally, I had spinal injections and spine surgery in the months post diagnosis to overcome horrible pain.
Only from excellent, expert, specialist treatment, care from loving family, support from friends, plus inspiration and guidance from fantastic coaches, am I blessed to enjoy a miraculously comfortable, productive, fulfilling life and days.
In addition to spending my final chapter in life making memories with family and friends, I'm committed to the missions of coaching and advocacy.
I'm proud to be aligned with my local Phila myeloma support group, HealthTree.org, the Leukemia and Lymphoma Society, and I'm looking forward to becoming increasingly active in Patient Circle advocacy efforts.
I share my story and work for advocacy to help facilitate information, support, and logistics for people who need health advocacy.
I pray that my efforts help provide hope, encouragement, healing, and the inspiration for others to overcome their challenges and live optimally well, happy, fulfilling days.
My main areas of focus are:
1) To influence early health diagnosis, healing interventions, and treatment among the global public by emphasizing the need for individuals to schedule annual physicals with bloodwork, plus to practice health proactivity.
2) To encourage, educate, coach, and support myeloma patients along with caregivers to seek specialist care and help direct them towards the best facilities and resources.
3) To advocate for and help facilitate equitable treatment access and affordability.
The circumstance of late diagnosis is inefficient: for the patient, for the therapist, and for the additional treatment dollars spent on additionally resolving co-morbidities.
Myeloma is notably odious in this regard.
Unfortunately, in the vast majority of cases, it is still being diagnosed and treated at a late stage... after chronic damage, necessitating chronic treatment... and with diagnosis still often being missed.
There are fortunately many brilliant, dedicated minds focused on and making amazing progress towards solving this disease on many levels and from multiple perspectives.
However, IMHO, there is an important big picture perspective and coordination missing.
At this point in the battle against the disease, there must ultimately be these questions addressed to... and collectively solved by... the research and medical communities.
How do we implement a system for the routine early diagnosis of myeloma: with "early" being defined as before incurring a symptomatic, chronic damage stage?
Furthermore, when, what, and how to apply therapies most effectively and economically on both micro (per patient), but also macro levels to reduce overall spending on treating this disease.
Coordinating these these answers to increase patient diagnosis, treatment, quality of life, and survival using precious resources... including dollars... most efficiently.
Thank you for taking the time to read.
I offer free coaching support, plus share my story more extensively in the links below...
An interview: where I discuss my life-saving treatment...
https://audio.com/richard-armstrong-audio/audio/rich-vege-radio-interview-with-gary-harris-on-health-and-myeloma-052224
My story on HealthTree.org...
https://healthtree.org/myeloma/community/articles/rich-armstrong-myeloma-patient-story
and my link for free coaching, for anyone needing guidance...
https://healthtree.org/myeloma/coach/app/coaches/1AniEJDL0bb9ZMnmqqfAT8AyHFh2-GxAhXAnh3drV4xY5Vf3A-COACH
Please do reach out with questions and / or for assistance.
My Motivation and Inspiration
Upon diagnosis, I had no idea if I'd live.
Furthermore, if so, what my life as a myeloma patient would / could be.
I'm so grateful that I'm able to have treatment that has saved my life, plus facilitate my ability to have comfort and fitness so to live well.
But I'm especially blessed for the people... my family, friends and coaches... who always been available to extend the critical love, support, encouragement, inspiration and guidance, so to make my life wonderful, worthwhile and fulfilling.
Being the beneficiary of such healing human kindness has inspired me to commit to supporting, inspiring, and advocating for other.
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