The following is written by myeloma patient, Rich Armstrong.
Great, glorious day! My wish is that you are well and have comfort, joy, and fulfillment. I'm Richard Armstrong, challenged by multiple myeloma, but not broken by it.
I was diagnosed in May of 2021. This diagnosis came after suffering uncomfortable, painful, and progressively debilitating symptoms for over six months.
The story of my diagnosis that's worth sharing is I am blessed to be alive and living: a very late diagnosis left me very close to death.
I survived and am learning some hard and important lessons that I must share along the way.
In November 2020, I began feeling poorly, having back pain and episodes of shortness of breath. My health trended progressively worse, but I had no intention of going to the emergency department, given during that time, it was filled with COVID patients and I did not want to risk exposure.
So I kept pressing on, figuring things would improve. Why wouldn't they? I'd never suffered any lasting illness.
This was a poor decision, ultimately a huge mistake, and almost cost me my life!
Ironically at the height of the COVID-19 pandemic, I ultimately landed in the emergency department: amidst a roomful of COVID patients.
Turns out I was in acute kidney failure with severe anemia, hypercalcemia, and kappa/light chain numbers over 43,000. The doctor was “amazed that I was able to walk in,” given the severity of my condition.
My self-created delay in seeking treatment ended up being a factor in my very poor, serious condition at the time of my diagnosis.
Lesson 1: Don't Delay Seeking Medical Care When You Feel Abnormally Unwell
Because 30 years prior, I'd had a previous serious back injury, requiring a body cast as part of my treatment, I was self-diagnosing my discomfort and symptoms. I thought my spinal pain was due to age and shortness of breath from wearing masks everywhere publicly.
I pressed on with life and initially self-treated. I took over-the-counter pain medication (non-steroid anti-inflammatory drugs) so to help with the pain.
What I didn't know was how potentially damaging doing so was to my kidneys: especially on top of the circumstance of having undiscovered, underlying multiple myeloma.
This leads to lesson number two.
Taking NSAIDs Chronically Can Harm Your Kidneys, Especially with a Myeloma Diagnosis
In January of 2021, I finally decided to seek medical treatment, as my spinal pain was horribly unmanageable, plus I was constantly feeling out of breath and having difficulties holding my urine, especially after any (even easy) physical activities.
I'd lay awake at night, having spasms and searing pain in my back and neck so bad that I could barely swallow properly and imagined if I would be able to ever gain relief.
Once I had resolved that I would see a doctor, I had difficulty getting an appointment due to the pandemic. Medical appointments were almost impossible to get.
I decided to see an osteopath for treatment, as I thought my condition resulted from spinal injury and I just needed some chiropractic adjustments.
Lesson 3: Don't Self-Diagnose
Several weeks later, I finally obtained an appointment to see an osteopath who declined to perform adjustments and recommended I start with bloodwork.
I discounted the potential diagnostic value of bloodwork, sought only to relieve my pain, and looked for medical professionals who would do the same. Six weeks later, I was seen at a pain clinic. The doctors there immediately suggested spinal imaging, pain medication, muscle relaxants, and nerve-soothing medication.
Unfortunately, my initial imaging revealed troubling new anomalies in addition to the expected aged injuries from long ago. There appeared suspicious spinal lesions: that suggested a condition of metastatic, late-stage cancer.
A second image using contrast confirmed the lesions and the Pain Clinic doctors requested further imaging to "find the origin of my cancer."
The very afternoon this imaging was to occur was the day I landed in the emergency department. That morning, I had scheduled my bloodwork to be finally drawn, done so, and was driving to the imaging location. A call came in. It was my primary care physician.
Less than 15 minutes after my blood draw, she ordered me to go directly to the nearest emergency room after receiving what turned out to be horrifying blood lab results.
Lesson 4: Schedule Regular Doctor Visits and Insist on Routine Bloodwork Each Time
Had I submitted to bloodwork weeks, months, or even years earlier I would have been diagnosed and treated for myeloma sooner, plus spared from irreversible injuries to my kidneys.
Poor decisions landed me in the Emergency Room, where I spent a day and a half being critically ill in a triage room. There were COVID patients on gurneys lining the hallway outside my room. It was surreal and disconcerting.
No beds were available on the hospital floor, but the treating staff advised me that I was going nowhere and facing admission. I had no idea how ill I was.
It turns out they were desperately working to help keep me alive, as I was in acute kidney failure, and they were also trying to diagnose me. In that triage room, I was told that they were certain I had multiple myeloma, but would need a bone marrow biopsy to confirm the diagnosis.
I had heard of multiple myeloma but didn’t know the symptoms. After they left, I searched on my phone for the symptoms of myeloma and realized that I had warning signs that could have told me to go see a doctor about my symptoms months ago.
The symptoms lined up exactly with my maladies.
But what the internet search did for me was give perspective. It was impossible to surely know "when my time would be up" at this point.
It appeared that given access to properly targeted therapy, plus great care, myeloma patients currently had much better survival rates. Eventually, a hospital bed was found, and I shared a room with another apparent blood cancer patient.
Despite my fear of contracting COVID, the immediate challenge was to save my life, kidneys and confirm the diagnosis. Then it would be time to type and grade my myeloma: to determine the best treatment.
Confirming the Multiple Myeloma Diagnosis
I was given a bone marrow biopsy that confirmed my myeloma. Then I was fitted with a neck catheter, so as to undergo two emergency sessions of plasmapheresis: a treatment for filtering damaging myeloma-created proteins out of my blood to treat and save my kidneys.
On the first of many such occasions since, I was given a consent form with pages that detailed quite terrifying potential side effects. These included stroke, heart attack, blood clots, and risks of contracting Hepatitis and HIV.
Not fully realizing that I would die without the treatment, I balked and questioned the technician, who patiently explained that the risks would be minimal. The technician kindly explained that the case of Hepatitis and HIV risks was nonexistent because artificial plasma was being used.
I appreciated the consideration of his gentle explanation. If I were the technician, in my best Arnold Schwarzenegger Terminator voice, I would have just implored: "Come with me if you want to live!"
While undergoing the plasmapheresis process, the technician also reassured me that the condition of multiple myeloma can be and is indeed now treated for good outcomes.
From that point forward, I still read the consent forms and consider the risks of treatments, plus medications, but summon faith over these potential circumstances.
I'd jumped my first shark and made a conscious mental adjustment towards accepting the risks I'd need to take to live with myeloma going forward.
Upon the return of the bone marrow biopsy results, several hours later, fortunately, a multiple myeloma specialist visited me in the hospital and explained my condition and what treatments were available.
From the outset, my myeloma specialist informed me that this disease is currently incurable and tends to relapse (as of May 2021) but that there are effective treatment options. These treatments would be in stages: including a Stem Cell Transplant and a maintenance therapy regimen.
I joked with him, "(that) I now have to battle my second terminal diagnosis: with me being born human the first."
Given that my life, and at least chronic kidney functioning, hung in the balance, I had literally zero time for choice of second opinions, nor treatment options, if I'd even wished for one.
Beginning Treatment for Multiple Myeloma
The myeloma oncology specialist furthermore explained "light chains" as a measure of myeloma presence and the plan to treat my condition.
With a terrible light chain number of over 43,000 and no time to waste, I literally just had to trust. Likewise, I simultaneously needed to trust the kidney/nephrologist who desperately treated me to save my life and from the necessity of permanent dialysis.
During the 11 days of hospitalization, I made remarkable progress. My life was saved, and my kidney functioning was fortunately improved, avoiding dialysis.
Along with two rounds of plasmapheresis, I was pumped with about 15 pounds of fluids. Simultaneously I received my first doses of anti-myeloma drugs: VELCADE and daratumumab.
Immediately, my light chain number was cut in half, and this occurred with each treatment of this regimen, even as an outpatient.
With my kidney functioning improved to a high stage 4 condition, with a GFR (glomerular filtration rate) of around 20, the next goal and focus was to eradicate the myeloma.
This seemed so far away as I needed to get my kappa light chains down to between 3 and 19 from where I'd begun with over 43,000!
After regular bi-weekly outpatient sessions for eight months I finally, miraculously, reached my goal, testing at a light chains level of 16 during the time just before my stem cell harvesting.
My multiple myeloma specialist, hospital staff, and wonderful outpatient treatment clinic provided me with the hope of productive treatment. They were a big blessing in my life.
This leads me to the next lesson.
Lesson 5: Seek Treatment with The Best Myeloma Specialist You Can Find
Even before my Stem Cell Transplant, I was fortunate and very grateful to have reached such a low level of myeloma in my blood. This is due to a skillful "consolidation" treatment regimen.
My team 'threaded the needle' to provide remission using at times, cyclophosphamide, dexamethasone, VELCADE, daratumumab, and REVLIMID to reach induction goals, despite my damaged kidneys and with few tolerable, gentle side effects!
I felt like "ringing the cancer bell" just for the development of finally being "in the green" with my light chain numbers.
Although given the diagnosis of multiple myeloma, there is realistically no bell-ringing opportunity: because this disease is so usually of a recurring nature.
What was really great was that I'd felt surprisingly well physically and spiritually throughout the months of my consolidation treatment.
I'm convinced that there is no way that I could survive or avoid a life of dialysis or have achieved such a good outcome without the fortunate circumstances of treatment by top specialists.
I only had one brief but very scary reaction upon my first daratumumab administration, where I had to be given an emergency injection of Dilaudid to halt an episode of "the rigors". But thankfully, my high myeloma level was immediately cut in half by daratumumab, and it has proven to be extremely effective in influencing my remission.
Some months later, I had a very unpleasant reaction where I spent hours in agony on my bathroom floor in the evening after an administration of Zometa: a bone-strengthening drug. A max dosing of oral Tylenol finally worked to relieve this circumstance.
Fortunately, I've had no huge, lasting issues from these incidents. I continued on the daratumumab with no problems and was prescribed Xgeva instead of Zometa.
My Stem Cell Transplant Experience
My Stem Cell Transplant occurred in March 2022. I spent 18 days in the hospital but felt surprisingly well, considering that the high-dose melphalan administration caused hair loss and low immunity.
Fortunately, again, my potential symptoms of both nausea and infection were very well treated prophylactically, so I was largely comfortable during my stay. The actual melphalan dosing and the transplant procedure were relatively easy affairs.
I had to get a couple of blood transfusions, due to my chronic condition of anemia. Of course, there was the constant nuisance of IVs, blood draws, and round-the-clock monitoring, but I'm resolved to endure whatever it takes to improve my health and outcome.
The noteworthy issues I faced during hospitalization were extremely dry lips, mouth, and hands (from such frequent washing) and some fatigue, though thankfully I never felt debilitated.
I chewed ice for the first few days and kept a small dish of hard candy and a large bottle of water to combat the dryness. I did have hair loss in many areas of my body and I'd shaved my head plus face before hospitalization so as to limit any potential mess.
I was happy to avoid contracting any infections throughout my stay and only vomited once on day 15. I was lucky to have had a few bowel problems, maybe only a day of loose bowels.
Furthermore, I was able and made the effort to walk my hospital room floor at least a mile, sometimes two each day, although I'd been warned that low energy states are common for weeks after a Stem Cell Transplant.
Upon my hospital discharge, I continued to have very dry, cracked lips, mouth, and hands: but this condition gradually reduced, as did days of low energy, over about four week period.
Once home, I didn't expect to have such a ravenous appetite, but increasingly, for about three months, all I wanted to do was eat! Surprisingly, my care team was encouraged by this development.
I gained 30 pounds but returned to walking up to 5 miles daily over the next few months, so I eventually lost this weight.
Meanwhile, my kidneys are considered to be permanently damaged and seem only capable of a stabilized, low mid-stage level 3 functioning maximally at this time. I likely must live with Chronic Kidney Disease.
Because of my damaged kidneys producing a low-level EPO (Erythropoietin) and the bone marrow malignancies caused by myeloma, I suffer from chronic anemia and sometimes shortness of breath, plus fatigue upon activity.
I transitioned to the maintenance phase of my treatment after a couple of months post-stem cell transplant. I am actually participating in a clinical trial of a daily low-dose REVLIMID 5mg (because of my low kidney functioning) plus subcutaneous daratumumab.
Thankfully I've tolerated this regimen well with no significant side effects and this treatment has been effective after one year.
Living Now with Multiple Myeloma and Its Side Effects
My recent bone marrow biopsy Flow Cytometry results in August show a minimal disease status. Hopefully, the trial therapy will prolong this result indefinitely.
An additional circumstance that I had to confront along the way was spine surgery due to a herniated disk located just below my neck. This was likely caused by the spinal lesions from myeloma that had formed before treatment. I had developed increasingly terrible pain, plus numbness in my hand from the herniation. Two epidural injections eased the pain, mostly, but didn't help the numbness in my writing hand. I've used the same hand to hold my guitar picks for 40 years.
My surgery was successful: relieving the nerve compression, but I have the artifact of hand numbness that has not been solved. I work around the discomfort and frustration of losing the dexterity to play my instruments still.
These days I'm still challenged by myeloma and doing monthly maintenance treatments to keep it at bay. I'm fortunately living pretty well and mostly comfortable days, despite this disease.
I accept that I must make tough concessions to myeloma and its challenges, but my frame of mind is one of being absolutely grateful that I had and have great care from the outset, along with the opportunity to live.
The circumstance of relatively timely, specialized, optimized care has saved my life and afforded me precious, glorious days of living.
Becoming the Myeloma Patient That I Want to Be
I definitely desire to continue living, and my participation in a clinical trial has made me a valuable source of data for my therapy, potentially impacting future treatments.
Having a diagnosis of multiple myeloma doesn't mean you can't live well; making smart choices in treatments and lifestyle can lead to a fulfilling life.
I've managed to lead a more comfortable and satisfying life than I initially thought possible after being diagnosed with "incurable" blood cancer. Being an informed and cooperative patient has been crucial for me.
I consistently strive to enhance the effectiveness of my treatment and improve my overall quality of life. Each day I wake up is a blessing.
I'm especially grateful for days when I experience comfort and functionality. While I can't ride my bike 60 miles in the summer without any pain, I still appreciate these days.
My approach is to embrace treatment positively, not dread it. These treatments were my only hope, and they have ultimately saved me and extended my life.
The support from family, friends, healthcare teams, and coaches has played a significant role in reclaiming my life from myeloma. I've even become a myeloma coach to give back to others.
Lastly, adopting an attitude of gratitude has been transformative for me. I'm genuinely thankful for both big and small positive aspects of life that I can't control. While people may disappoint or abandon us, I've learned to cherish acts of kindness, mercy, service, care, and love. My daily mission is to give and receive these gifts while living joyfully and spiritedly, even through tough times.
I strive for positivity despite challenges. I hope you can also live optimally, happily, and courageously every day, radiating joy to others.
I sincerely hope my story has been of help. At the very least, remember that you're stronger than you might think if you choose to be.
Interested in reading other myeloma patient stories? Click here: Myeloma Patient Experiences
Wanting to increase your wellness? Learn more through these past webinars: Nutrition and Wellness for Myeloma Webinars
Looking to connect for free, one-on-one with a myeloma Coach? Do so here: Myeloma Coach Program
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.
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