Update 2024-0725
None, Zilch, Nada
Another trek to Seattle to meet my oncologist turned into a delightful afternoon with my beautiful wife, Jackie. We dined on the deck of Duke’s Seafood Restaurant, a favorite spot overlooking the exciting waters of Lake Union, with yachts and sailboats and all manner of things that float, seaplanes swooping in, and the sweet smell of fresh water in the air. We basked in the sensual summer of our Pacific Northwest paradise as we took in the impact of the wonderful visit we’d just had with the oncologist.
I am cancer-free. My latest quarterly Bone Marrow Biopsy revealed ZERO cancer cells; no cells were found in the 2.8 million cells examined. NONE. ZIP. ZILCH!
Jackie and I first received this blessed information with a ping from MyChart while at home, in our slippers, having morning coffee. We shared a moment of quiet acknowledgment that not only was all still well, but it had gotten as good as it could get.
It almost seems my transplanted stem cells knew a thing or two about doing the final mop-up of myeloma following the high-dose Melphalan chemotherapy that wiped out my bone marrow. I have no clue if that supposition is medically correct, but it’s a concept that resonates with me.
Survivorship
To recap, three months after the stem cell transplant, the myeloma cell count dropped from where I started with 626,000 myeloma cells per million to a measly two cells per million. By six months, the count was reduced to less than one cell per million. Nine months post-transplant, the tests showed NO detectable myeloma cells.
Though commonly understood as incurable, at least for now, myeloma met its match in me, my care team, and the tribe of loved ones that have showered Jackie and me with healing love.
When they pulled a sample of my marrow from my iliac crest—the broad, butterfly-shaped bone at the base of the spine—there's a chance they might have missed some lurking myeloma “hooligan,” potentially poised to cause trouble in the future. However, today tells a different story: I am cancer-free. Moreover, I’m currently off all cancer-targeting medications, as every test indicates there’s nothing left to target.
This latest health update represents a significant victory for my body. All drugs carry their burdens, and while myeloma maintenance drugs are effective, they are tough on the system. My doctor plans to continue a program of treatment-free surveillance with regular blood tests and quarterly bone marrow biopsies. Should the cancer dare to return, we will be all over it like fog over San Francisco. (I could not resist that cliche; I’m missing my Bay Area peeps.)
In this welcome reprieve from what could have been a relentless onslaught of little toxic internal baths, my focus has shifted to nurturing my well-being. I am committed to a good nutrition and hydration regimen, resuming my weight management lifestyle, engaging in physical therapy to restore my strength, ensuring adequate sleep, embracing daily meditation and good boundaries to manage stress, and fostering a life filled with joy and gratitude (i.e., Jackie).
I’ve got a ways to go to heal what the cancer and its treatments did to my body. My kidney function is slightly compromised, and the fatigue lingers. It's a delicate balance, pushing to build stamina without overextending and risking further damage.
Managing Immunocompromise
The blood markers that tell the tale about my immune system remain below normal levels. Immunoglobulin transfusions, a plasma immunity cocktail made up from the blood of hundreds of local people, which could help boost these markers, have potential side effects. Because I’ve had no infections since my initial recovery from the transplant, my doctor suggests delaying any immunity treatments.
“The operation was a success, but the patient died” is a real thing. The leading cause of death for myeloma patients is infection. Even with no evidence of disease, the cancer and treatments made me more susceptible to infection, and infection was a close call for me when I had septic shock in May 2023.
Jackie and I are both NOVIDs; neither of us has had COVID or any other contagious illness in the last five years. Our success is likely due to our stringent preventive measures: social distancing, frequent hand washing and use of sanitizers, wearing masks in most public places, and avoiding large gatherings in poorly ventilated spaces and sick people. Even when someone says, “It’s just allergies,” we decline to be near them. These precautions have been effective and are not only a preferable alternative to treatment but also a darn good idea given what I’ve lost immunity to.
In September, marking one year since my transplant, I will have testing to measure the concentration of antibodies in my blood. This will kick off the re-vaccination process, where I'll receive my “baby shots” for a variety of diseases—common flu, measles, mumps, and rubella (MMR), hepatitis B, polio, diphtheria, tetanus, and acellular pertussis (DTaP), pneumonia, Haemophilus influenzae type B (HiB), and the meningococcal vaccine. I see a lot of lollipops in my future. Until these vaccines take full effect, I remain vulnerable to these diseases. This is another reason for those “stringent preventive measures,” particularly in international hub airports.
Visit with Transplant Nurse
While at the clinic, we took the opportunity during some extra time to go upstairs to say hello to Sarah, the nurse who was dedicated to my care during the transplant process. It had been a while since we last saw her—forty days post-transplant, to be exact. She was visibly overjoyed, repeatedly exclaiming, “You look great,” as we shared the news of my remission. I, too, felt an overwhelming sense of joy at the sight of Sarah, recalling how she tended to every step of my challenging stem cell transplant process. Words fail me here.
Sarah said that the transplant team rarely gets to see such remarkable recovery outcomes firsthand. She said, “It can be quite ‘grey’ around here at times,” and expressed gratitude for our visit. Indeed, several other staff members were equally delighted to see us in the hallway. It was a poignant reminder that our visit was less about us and more about the hope and perseverance we symbolize. As we parted ways, I felt compelled to encourage Sarah, saying, “Keep on healing people. It works.”
Mary Don’t Languish
Someone said, “You could put that on a bumper sticker—Mary Don’t Languish.” I like the statement and the imperative. At a stage when many people begin to slow down and cave into new limitations prematurely, I find myself saying, “Oh hell no!” The hard-fought effort to clear myeloma from my body, achieved not just by me but also by Jackie and many of you, fuels my refusal to ail.
I often portray this recovery as straightforward, but it’s far from it. I've always found many of the activities I now engage in—those things necessary for healing my body and mind—to be irritating interruptions to other things I want to do. Frankly, I still don't enjoy them, but I persist because the alternative is much less appealing. I’ve changed the narrative from disliking the program to choosing a future I want.
A New Experience with Bone Marrow Aspiration
Where other tests assess myeloma by noting its collateral damage to the body and its systems, a bone marrow aspiration (BMA) looks myeloma straight in the eye. BMA is crucial for diagnosing and staging myeloma. It evaluates the disease’s aggressiveness and identifies molecular or genetic markers that predict its progression. Essential at the outset of treatment and at key milestones, BMA establishes a baseline for precise monitoring of treatment efficacy and detects any recurrence at its earliest stage.
A typical BMA involves extracting a sample of marrow and a small piece of bone from the iliac crest—the butterfly-shaped bone at the base of the spine—using a specialized needle-like device designed specifically for this purpose.
This minimally invasive procedure is typically done using only local anesthesia, although sedation may be offered depending on the patient's preference or anxiety. Either way, there is no way to block the pain of the “pull” of the marrow from the interior of the bone and sedation is not a “nothing burger.” Most myeloma patients are over sixty, and the use of sedation in older adults is serious business due to its potential impact on cognitive function and links to dementia.
Understanding medication risks is crucial for older adults, yet it's surprising how rarely this is addressed in medical consultations. Informed consent requires having all necessary information to make educated decisions. The American Geriatrics Society (AGS) Beers List is invaluable for identifying potentially inappropriate medications and facilitating discussions on drug risks and benefits between patients, caregivers, and healthcare providers.
The BMA procedure is a cringe-worthy topic. Patients and care providers alike often wince at its mention. Extensive procedural BMA information is available online, so I’m only focused here on how I’ve come to prepare for and manage the body’s intense pain response to the insult of extraction of marrow and bone.
The pain comes from the reaction of the outer layer of the bone, which is richly innervated and exceptionally sensitive to any disturbance, as is what happens with the sudden extraction of marrow from the interior of the bone. On the infamous pain scale from one to ten, even with my high pain tolerance, I’ve experienced BMA as a twelve. The good news is that it only lasts during the extraction; the pain does not linger.
What good would it do for me to be successfully treated for myeloma only to be saddled with cognitive decline? This question guides my risk assessment at every stage of treatment. Therefore, I choose to forego optional sedation during BMAs, opting instead for only local anesthesia to alleviate the soft tissue discomfort of the procedure.
My years as a doula for laboring women taught me much about embracing intense, brief, repetitive pain and breathing through its short duration. That was how I approached my first few BMAs. During the procedures, Jackie would sit by my side. I focused intently on her supportive presence—her face, her eyes, and the comforting hold of her hands—using breathing techniques to manage the pain. My body stiffened involuntarily each time the marrow was drawn, but the intense moments were fleeting. Then, it was over, and the recovery was nothing more than a Tylenol event.
Since achieving no evidence of disease following my stem cell transplant, my “treatment-free surveillance” relies on dependable and timely data. BMA offers the most reliable snapshot of my bone marrow's status, crucial for detecting any recurrence of myeloma so we can resume treatment promptly. Realizing that BMAs would be a part of my life every three or four months, I became determined to find a way to manage the experience.
I found it!
Soon after learning that myeloma cells were no longer detectable in my bone marrow, I started using a guided meditation my therapist recorded for me. The meditation paints the picture of my immune system spotting any mutating plasma cells that might become myeloma cells and sweeping them up and out before they become a problem. Cancer patients often become disconnected from their bodies. Meditation is not a curative process; it simply offers significant stress relief and mentally anchors me to my body.
The meditation starts with soothing verbal cues and deep, slow breaths that result in a palpable relaxation response. Intrigued by its potential, I decided to experiment with using this meditation during my BMAs to see if it could enhance my comfort and calm during the procedures.
Once in position, while the nurse prepared the BMA site, I popped in my earbuds, and Jackie, seated right beside me and holding my hand as she always does, pressed “Play” as the procedure began. I concentrated on my breathing, and down I went in a visualized tiny elevator along my spine. When the door opened at the level of my iliac crest, I was again struck by the intricate beauty of my bone marrow—a robust, spongy framework bustling with the activity of my fresh hematopoietic stem cells creating red blood cells, all the different kinds of white blood cells, platelets, macrophages, natural killer cells, T cells, and B cells; all these lovely life-giving components of my immune and circulatory systems. It's a very happy, healthy, little factory environment.
When the procedure was completed, I found I couldn’t give a number to the pain. I know the pain happened; my body involuntarily stiffened as it always does, but my sense of it was more observational, much like how I imagine Jackie perceives it. The pain felt distant, managed through my focused meditation.
This was my eighth BMA in less than two years, and it differed remarkably from the rest in every good way. As we left the procedure suite, a medical assistant said, “Hopefully, you won’t have to be back for another one of those for a while.”
I recognized her words as a kind and cheery farewell and smiled as I responded only in my mind, “Oh, I will see you soon, and I hope often. It will mean I’m still free from myeloma and very much alive.” This mindset helps me cope with the pain and fills me with gratitude for each surveillance procedure that contributes to my thriving.
If you or someone you know has Bone Marrow Aspiration as a part of their life and would like an empathetic ear and perhaps a few tips and tricks, I’m here to pay it forward.
Cancer Changes You
It’s a common statement: "Cancer changes you.” As ubiquitous as the expression is, so is its associated notion. It suggests that confronting mortality leads to a seismic shift in perception, a reassessment of what truly matters, and a different valuation of life's elements. This transformation is undoubtedly true for many, if not most, people who live with cancer. Yet, I’m curious how many of those would concur with my view that these words only begin to touch on the actual depth and breadth of the experience. Perhaps this is one of those “you had to be there” situations.
As I’ve grappled with this for myself, I’ve come to appreciate the unique, profound, and nuanced impacts of events from the lead-up to the diagnosis through remission and recovery and into survivorship.
One of the many changes for me seems to be something of a change to my basic personality.
Before cancer, I was decidedly extroverted. Being around large numbers of people—talking, interacting, listening, and learning from them—energized and balanced me. Since my cancer diagnosis, however, there's been a noticeable progressive shift. I now find comfort in less, much less, embracing a more introverted side. I'm curious whether this change is a temporary psychological side effect akin to how my hair loss was a physical side effect of high-dose chemo. Initially, I lost it; it returned as a light fuzz, only to come back vigorously, albeit quite different.
For the time being, cancer fatigue gets the upper hand with me every time I attempt to push beyond my stimulation limits, with exhaustion serving as a compelling teacher. Previously, I could mentally muscle my way through almost anything. I had no idea about the tremendous amount of energy I expended. In the rarified world of severe illness, I've come to realize the toll required to live inauthentically.
I've been paying attention to these strange new occurrences of being easily overwhelmed by too many people and too much going on for too long. I am noticing that an abundance of external stimuli drains me. To use another common phrase—it takes everything out of me. If I try to press on, my body pulls my mental plug, and I suddenly have trouble staying focused and awake. Then, I have little choice but to stop whatever I’m doing promptly.
Mind you; these are the musings and reflections of a person who is within the year after replacing cancerous bone marrow with healthy stem cells, a procedure that is extreme and causes significant bodily strain and challenging recovery. As physical recovery progresses and I work to find my “new normal,” I’ve done a bit of a seesaw between too much and too little. I can’t help but wonder if the choices I’m making now to titrate the extremes of life for the sake of peace and comfort might be a mighty fine idea going forward.
Writing My Way on Down the Road
The more I recover, the more I find myself writing. I've entered several competitions and started submitting my work to publications, eagerly anticipating my fair share of rejection notices—a rite of passage for any writer. Meanwhile, the book is progressing well; I anticipate completing the first full draft by early Spring. I know the whole story now, and I know how it ends.
My friend Heather spotted a shirt that seemed tailor-made for me based on an inside joke we share. It's funny how well our friends can know us. The caveat on the shirt is not wrong.
The least little thing gets the words flowing. Just last week, an event I witnessed, which highlighted a stark injustice, compelled me to write, channeling my frustration when there was nothing else I could do. Isn’t it just how life goes more often than we wish? I’ve become a good practitioner of knowing when something is or is not my work.
Here’s what happened:
“Adventure Tuesday” had arrived—a weekly ritual when my wife and best friend, Jackie, and I step away from our comfortable home to seek out the wonders of this paradise we chose for our retirement. Far removed from the high-tech hub that once trapped us in a vortex of constant turmoil, these Tuesdays focus on rediscovering each other and delighting in our new surroundings. This is a significant bump-up from the sporadic date nights we used to squeeze into our busy lives when my job dominated our time.
Some of our weekly excursions have been ambitious. Today’s outing was ordinary, based as it was on our need for particular shelving pieces to complete our closet renovation. The nearest supplier was two hours away, giving us the perfect opportunity to soak up new sights, sounds, smells, and tastes while attending to this routine errand.
It was an extraordinarily simple yet wonderful day, punctuated by a flavorful meal al fresco in a rooftop garden crowning a late 1800s building. Skin-temperature breezes swirled the air around us like a thousand delicate fingers caressing our arms, legs, and faces. I savored a salad, piled high with soft, smooth avocado slices encircling a beautifully grilled, crusty piece of wild salmon. Jackie’s meal was a party on a plate. Garden offerings of every color formed the base for succulent barbecue chicken fillets.
The Salish Sea stretched to our right and left, with gentle swells pulsing toward the Olympic Peninsula. The warm, salty air carried fragrances of flowering shrubs, mingling with the pungent scent of evergreens. As the sun ambled toward the mountains, it painted an ever-changing canvas of orange and purple across the high, thin clouds. The usual local attire of cargo pants, turtlenecks, and puffy vests gave way to shorts, light cotton shirts, and festive sundresses. We clinked our glasses, toasting joy and health.
Then, the moment shattered.
A plastic cup thudded against the wooden deck, spattering milk in a pattern investigators would tape off and preserve if it were blood at a crime scene. My eyes shifted from the spill to its origin—a pre-verbal child with hair like spun gold and cherubic cheeks perched on her grandfather’s knee. Her eyes were transfixed on the spilled milk; her face scrunched in puzzlement.
My mind’s ear made up words she did not yet have, “What just happened? How come my milk is down there?”
My real ears heard her grandfather's response. His tone wasn't loud, but his snarl delivered a gut punch to this child who only experienced life through facial expressions, sounds, touch, and attitude. “Look at what you’ve done!”
Her head spun quickly and upward toward him, her brow furrowing deeper at his disapproving scowl. She reached an arm behind her toward the deck, her eyes never leaving his face. With an even sterner tone, he said, “No. You dropped it. Now it’s gone.”
Her lower lip protruded into a pout, anguish and yearning mingling as her little fingers flexed in a “gimme” gesture. Her grandfather’s voice rose sharply, “No. No more. Not for you.”
Overwhelmed by his harshness, tears welled in her eyes as she turned her back to him. Before she could cry, she was lifted from her grandfather’s lap. I had hoped to see her mother lunge like a mama bear, reacting protectively against this cruelty. Instead, I saw cold efficiency. The baby’s wet eyes, wide and searching, found no solace in her mother's unsympathetic, distant gaze. She handled her daughter as if the grandfather had discarded a broken toy, and the mother was merely picking it up to tuck it out of sight.
The grandfather sat taller, adopting an even more formidable and dominating posture. His authority was unchallenged; he was every inch the bully.
As the waitstaff converged to mop up the spilled milk, no one thanked them or expressed regret for the mess. Except for the grandfather, everyone seemed to shrink, their bodies held still, eyes averted, subdued by the presence of a tyrant.
When their server, attempting to lighten the tense atmosphere, offered to bring another glass of milk, the grandfather snapped, “No! She gets no more milk.” At these words, even the server recoiled. Everyone was reduced to mere shadows in the stark tableau he controlled.
An intense ache clenched my chest. I leaned closer to Jackie, my voice barely a whisper, and said, “I think we have just witnessed the breaking of a soul.”
She nodded, her eyes filled with caution. Sensing my distress, she gave me a look that urged silence, wary that our words might carry. Her caution was well-founded—I always struggle to restrain my emotions in the face of any mistreatment, no matter how subtle. Is there ever truly a tolerable amount of abuse?
In the same quiet voice, I murmured, “I’d love to be in the room the next time that asshat drops something or spills his beer.” My voice trailed off, respecting Jackie’s wish for us not to visibly react to what had happened.
Then, as if on cue, the child’s father dropped his knife, which landed on the deck, still damp from the earlier spill. Without missing a beat, the grandfather, seated directly across, thrust his clean knife toward the father, saying, “Here, I don’t need this. You can use it.” The father accepted the knife and resumed his meal. They were both seemingly oblivious to the glaring double standard of the grandfather casually dismissing the father’s adult clumsiness, yet just moments before, having severely scolded an impressionable, vulnerable baby girl for spilling her milk.
If this were a cartoon, smoke would by then have been shooting out of my ears.
Instead, a familiar dramatic work played out that could be titled “Sins of the Father.” In just three short minutes, this family acted out a scene that demonstrated how to mold a perfectly blameless child into a person burdened with shame and anxiety, perpetuating the cycle of generational trauma. The subplot skillfully exposed the gender bias embedded in our cultural norms. I could only imagine the future conversations this child might have with a therapist, confessing, “I don’t understand why I’m so depressed, frightened, and furious all the time.”
I wanted to march over to that family and unleash a lecture starting with, “What is wrong with you people?!” Of course, I knew none of them could answer that question or comprehend other words I might offer from my deep frustration.
Watching injustice unfold on that rooftop amidst an otherwise serene summer evening made my heart pound and my arms burn from restraint.
Sometimes, I wish someone had intervened for me when I was in that position. Such thoughts do me no good. I now recognize the inevitability of certain events and understand that my work is to heal from and transcend my childhood adversities. I strive to live a nonviolent life characterized by the ability to listen with curiosity and communicate with peace.
Shifting in my seat, I focused on the setting sun casting a warm glow over the distant tree line. I drew in and released three long, slow, deep breaths. With every exhale, I willed compassion to rise above my anger, sending thoughts infused with lovingkindness toward the tiny human embarking on a tough journey—and extending this energetic embrace to the child's family. Then, turning to Jackie with a smile, I remarked, “Look how the water mirrors the sky this evening.”
Upcoming Travel
Between now and the end of the year, we have many travel plans—Canada, Colorado, California, and North Carolina, Texas, or somewhere yet to be determined. We have so much to look forward to—embracing dear friends and family, celebrating a wedding, and welcoming our first grandchild. This is shaping up to be an early leg of a Victory Tour dedicated to savoring life's sheer joy.
Jackie and I are constantly grateful for the unwavering care and support we receive daily. When our friend Bea learned of the recent positive developments regarding my remission, she joyfully proclaimed, 'It’s an answer to a prayer!' And indeed, it is—specifically, Bea’s prayer and the lovingkindness, “sparkles,” Chi, Prana, and prayers sent our way daily. We feel deeply cradled in a net of collective love. Thank you.May you stay safe, be well, love much and be loved, and have a life of ease. 💕
With all our love,
Mary & Jackie
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
That's great news!! I'm so happy for you. Cancer picked the wrong gal to mess with!!