Ronald Chin

The weight of choosing the best course of a multiple myeloma treatment plan and anticipating potential relapses are significant sources of apprehension and dread. It feels like a constant balancing act, navigating different options and possible outcomes. The mere thought of relapse is enough to send shivers down my spine, causing tension and unease in myself. Using the powerful influence of our minds, I have found ways to combat negative thoughts. Silently saying mantras like "Believe in magic and miracles" and "I am healthy," I focus on positivity. Instead of labeling our prescription "chemotherapy," I refer to it as "healing elixirs." These techniques help keep my stress levels under control.

During a recent visit to my storage unit, I committed to clearing out its contents. This decision was not only financial but also in line with the Swedish tradition of "döstädning" or "death cleaning." As I sifted through the accumulated items over the years, I realized the importance of freeing my loved ones from this burden after passing on.

However, it was disheartening to see how limited my abilities were — I could not help my wife move the heavy boxes of books, retrieve essential documents from the file cabinets, or even place bags of items onto the loading dock. Helplessness and anger at my physical limitations of the fractures in my spine overwhelmed me as I watched her take on tasks that used to come quickly to me. My exasperation grew as I felt incapable of helping or rearranging items into neat piles.

As I sort through my personal vault, I sometimes observe appalling behavior toward her. My voice takes on sharp, almost barking tones whenever we speak. It dawned on me that those closest to me bore the brunt of my frustrations, and this realization allowed me to see how much stress was affecting me while clearing out my belongings.

I gazed at my "things to do" list, and a wave of sadness washed over me. My energy levels have been affected, making it difficult to check off more than one or two tasks each day. It's disconcerting not to be as productive as I used to be. The more I think about it, the more discouraged I become, yearning for my past levels of efficiency.

The weight of life's unexpected and tragic events can take a toll on our mental and physical wellbeing. When my niece's fiancé was tragically killed in a motorcycle accident, I felt the heartbreaking impact of his loss. Despite wanting to attend the memorial service, we decided to wait a couple of months before visiting my 31-year-old niece to give her space and time to grieve. When we finally did see her, she expressed immense gratitude for our support during such a difficult time. This experience made me reflect on how trauma can negatively affect us, and I wonder if the significance of losing my mother may have contributed to my diagnosis of multiple myeloma.

Every day, without fail, I gather with my group, the Bells of Hope. They offer a safe haven where we share our thoughts and struggles and find inspiration in each other's company. As the leader, I carefully choose a topic to discuss during the first part of our hour together, guiding us through deep conversations that bring understanding and insight. For the last five to 10 minutes, I close with a meditation and the words "Om mani padme hum" as a mantra of compassion and gratitude to bring us closer to inner peace. This daily commitment also serves as my faithful alarm clock from Monday to Saturday, reminding me to carve out time for self-care and mental well-being amidst the chaos of life. The lighthouse is one of the signature symbols of our heartfelt group; it symbolizes our sharing of our light, wisdom and steadfastness amid the stormy seas of life.

In addition to my regular self-care routine, I find gratification in preparing fresh, healthy meals made from organic ingredients. As in the TV show, I feel like Top Chef cleaning and chopping fresh vegetables for homemade delicious dishes. Knowing that I am nourishing my body helps me to de-stress and feel grounded.

Attending regular physical therapy sessions not only helps with my physical wellbeing but also aids in the release of tension. On Tuesday afternoons, I join a qigong class. Through this ancient Chinese practice of movement and meditation, I have found a sense of calm and balance in strengthening both my mind and body.

Every week, I make time to sing — not only for the benefit it brings to my breathing for my collapsed lungs but also for the pure enjoyment it brings me.

Finally, attending multiple myeloma support groups has been highly beneficial for me.

Sharing my concerns with our cancer community has been instrumental in helping relieve life's uncertainties.

Through these activities, I have learned the importance of staying connected with diverse communities of positive and inspirational individuals. Surrounding myself with people who uplift and encourage me has been invaluable in my quest for wellbeing and happiness. I become more mindful of how I respond to outside challenges.

So think, how do you address and manage your stress?

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Articles

I need to acknowledge and address the impact stress from multiple myeloma has on my mental and emotional wellbeing. 

Recognizing and Managing Stress from Cancer

Before my multiple myeloma diagnosis, I traveled the world, teaching feng shui in Amsterdam and conducting retreats and workshops in Tobago, Machu Picchu, China, Brazil and Europe. My wedding was held at a beautiful resort in St Maarten, surrounded by the blue sea.

In the winter of 2017, I lay in my hospital bed with aching fractures in my spine and ribs. I surrounded myself with a sea of fluffy white pillows that engulfed my body. To alleviate the pain, I needed 12 pillows to provide softness, enveloping my body from the unbearable agony. As I gazed out the window, I saw glimpses of the birds and the blue sky, a reminder that life continued outside my four walls. But for now, I was trapped in the bedroom, my body broken but my spirit still fighting. During this time, physical therapists came to my home to help me do only breathing exercises and foot pumps. According to my doctors, they prescribed recovery in bed for a year; a simple twist of my body could result in paralysis.

But now, as I stand in the physical therapy studio, I am focused on balancing on a blue-domed sport balance ball. With precision and agility, I catch the black-and-white Wilson ball thrown to me by a tech assistant while Michaela, my therapist, stands behind me. What a difference seven years makes!

As I enter the spacious and airy sanctuary, sunlight streams through the large windows, offering breathtaking cityscape views. The warm and welcoming atmosphere envelopes me as friendly faces greet me with genuine smiles and cheerful hellos. I feel like a celebrity known for my infectious positivity toward my improvement. To me, exercise is a necessary step in my rehabilitation and a fun gym where I can continue strengthening my body. However, a downstairs neighbor who had a knee replacement has a different opinion; he sees it as a torture chamber. But this lodge represents hope, progress, and a chance at resumption.

With my physical therapist's guidance and support, I am determined to conquer this ongoing challenge of getting food from the lower shelves of the fridge or finding paperwork in the bottom file cabinet drawers. Her professionalism and dedication are evident as she guides me, constantly adjusting as I progress. Despite my back pain, I am determined to regain strength in my lower legs and glutes. Simple tasks become monumental feats, but with the help of a reacher tool, I can compensate for my limitations.

As I make my way to another session, I can't help but feel a mix of emotions. I see myself as the hunchback of Notre Dame. My reflection in their glossy facades serves as a cruel reminder of what cancer has stolen from me — my strength, mobility and my sense of self. The fractures in my spine from battling multiple myeloma have left me disfigured, a constant struggle to reconcile the sadness and anger and find peace amidst this new version of myself.

Despite my constant battle to maintain a positive attitude, I still struggle to accept the reality of my disfigured body. My reflection in the mirror is a constant reminder of the fractures that stole 6 inches of my once-tall stature. I am grateful for the rollator, a walker with wheels, and a seat. It is always there to help carry groceries or bring two pillows to support me when I go to restaurants. As I go through the crowded sidewalks, it is a protection barrier from the oblivious pedestrians too absorbed in their devices to notice their surroundings. I could use a cane to aid my mobility, but the potential hazards of uneven terrain and obstacles make me depend on my trusty urban SUV instead. Its versatility gives me the freedom and assurance to navigate through the city's constantly evolving sidewalks and neighborhoods.

My neighbor, Denise, and I have been friends for years. She even used to pick up my prescriptions from CVS during COVID-19 when I could not leave the apartment. We would laugh about her being my personal "drug mule." But now, things have changed. She broke her femur while crossing the street, and now she is a patient at the same facility that she recommended to me. It's a convenient ten-minute walk from our apartments.

But nothing can deter me from navigating the treacherous sidewalks and demonstrating my independence. In the early days, my wife would accompany me on these trips to PT, offering a reassuring hand amid uncertainty. But now, even she has complete confidence in my capabilities to conquer the obstacles and arrive at my appointments unaided.

With the support and encouragement of the beautiful team at Spear Physical Therapy, I can continue my journey towards recovery. Each exercise brings a sense of accomplishment and reinforces my determination and perseverance. Walking without any devices at home or indoors, going up and down steps, reminds me of the powerful strength within me and the unwavering resilience that guides me forward and helps me achieve greater physical and mental wellbeing.

After cancer, I've been learning to maintain a positive attitude regarding my self-image and rehabilitation.

Balancing Act: Navigating Self-Image, Autonomy and Rehabilitation After Cancer

For the past couple of years, I have dedicated my Wednesday afternoons to perfecting my singing abilities. Singing has become my saving grace, a lifeline that has helped me recover from the devastating effects of multiple myeloma on my collapsed lungs. 

This cancer has not only taken a toll on my ability to breathe, but it has also caused me to lose six inches in height. My once tall and proud frame now feels contracted and diminished, leaving me with conflicting emotions and a constant sense of self-consciousness. But when I let my voice soar through the air, all of those worries seem to fade away, replaced by a sense of strength and resilience. It's as if the music itself is healing me, one note at a time.

It all started as a Christmas gift from my wife, Heather, who connected me with her sister Laurel, a talented singing coach based in Atlanta. And although we may be miles apart, our weekly Zoom sessions bring us together as we embark on a half-hour journey of vocal exercises and warm-ups. 

With each session, we begin by focusing on our breathing and then move onto playful repetition of sounds like "Za ZaZaZaZa" or "No NoNoNoNo." But what truly brings me joy is incorporating my daily chanting of "Om mani padme hum, Om mani padme hum," a practice I share with my daily group, Bells of Hope. The sound fills the room and transports me to a place of peace and harmony as I continue to hone my vocal skills with each passing week.

During recovery, as I lay in my hospital bed, I reached for the spirometer, a small plastic device with a tube attached to a small ball. It was my constant companion during this time, measuring my lung strength and reminding me of my physical limitations. Frustration and helplessness often consumed me as I struggled to push myself and regain my strength, but there were also moments of anger when I would toss the spirometer into the nearby trash can. In those moments, however, a voice inside me reminded me that I needed to persevere, not just for my health but for my own peace of mind.

As I began my singing lessons, the first piece I chose to tackle was the timeless melody of “Moon River”. This classic tune holds a special place in my heart, as it takes me back to when I first learned to play the clarinet. It was the very first song I had to memorize and master, and every note brings back memories of hours spent practicing in my living room.

But “Moon River” is more than just a musical aria for me. It also holds sentimental value because of its association with one of my favorite films, “Breakfast at Tiffany's,” starring the charming Audrey Hepburn. The simple yet moving lyrics encapsulate the journey of life, with all its ups and downs.

And perhaps most importantly, “Moon River” speaks to my romantic soul. Its dreamy melody and wistful lyrics transport me to a world where anything is possible and love knows no boundaries. With every note I sing, I am reminded that music has a way of capturing emotions and memories that words simply cannot express.

As Laurel and I continued our sessions, I chose "I Dreamed a Dream" from “Les Miserables” to fill the air. This touching melody washed over me, bringing back memories of watching Susan Boyle's iconic performance on “Britain's Got Talent.” At that moment, I couldn't help but feel inspired by her transformation from an underdog to a confident and beautiful performer. As I sang, the emotions of the song came flooding through me, filling the room with passion and hope. This was more than just a song to me; it was a reminder that dreams can come true and anything is possible.

On certain days, when the kitchen is fragrant with the aroma of spices, almond flour, cinnamon and maple syrup, I like to turn on my favorite radio station, Pandora. The familiar beat of "I Will Survive" by Gloria Gaynor fills the room, transporting me back to my younger years spent dancing in disco clubs. As I mix and stir, the lyrics resonate with me, serving as a reminder to keep fighting my battle against multiple myeloma. The upbeat tune and empowering words give me the strength to continue on my journey.

My repertoire includes a diverse selection of songs. One such timeless melody is "Somewhere Over the Rainbow" from the beloved classic film, “The Wizard of Oz.” Its beautiful lyrics and soaring notes transport listeners to a world of wonder and possibility. Another iconic tune that I often perform is "The Hills Are Alive" from “The Sound of Music,” its lively and spirited melody echoing through the hills and bringing joy to all who hear it.

But one of my recent favorites is "The Sound of Silence" by the renowned folk duo Simon and Garfunkel. The poignant lyrics and memorable melody capture the bittersweet emotions of introspection, leaving a profound impact on all who listen.

Despite their different styles and origins, all these songs share a common theme — one of hope, inspiration and uplifting. Each note carries with it a message of resilience and perseverance, reminding us that no matter what challenges we face, there is always light at the end of the tunnel. As I pour my heart into each performance, I am filled with a deep sense of gratitude for the ability to touch others' hearts through music.

Even though multiple myeloma had devastating effects on my collapsed lungs, singing has helped regain my sense of strength and resilience.

Songs That Uplift During Cancer Recovery 

When I started taking a bone strengthener, also known as Zometa, could anyone have predicted that a fragment of my jawbone would detach itself from my mouth? As I was relishing a basic salad, I was stunned when I detected a small piece of bone mingling with the masticated pieces of fresh arugula, scallions and olives. A consultation with an oral surgeon clarified that this was a normal bodily function of expelling deceased bone matter.

In the previous year, I suffered from a tooth infection and it was evident that my lower left molar, "Tooth #18", needed extraction. The surgical removal took place in May 2022. Now, a vast gap exists between two of my back molars, reminiscent of the lions guarding the entrance to the Hong Kong and Shanghai Banking Corporate headquarters in Hong Kong. Typically, the gums would heal within a few weeks. However, having been diagnosed with multiple myeloma, the tissue recovery process was prolonged. I am thankful that the oral surgeon was well-informed about the state of the jawbone in relation to my special condition.

A close friend of mine is experiencing significant discomfort in her upper jaw, making eating a challenge. Her treatment uses denosumab (Prolia, Xgeva) for postmenopausal women with osteoporosis. She cannot even savor her beloved caramel candy. Moreover, intervention could potentially lead to inadequate bone healing. To alleviate the pain, oral rinses, antibiotics and pain relievers are suggested.

On the MM Support Facebook group, there are many people sharing their jaw experiences. One person posted “my teeth are getting hammered. I’ve broke 3 teeth (all in the back) since starting treatment.” Another person replied “Was on Zometa for 3-4 years and been off of it for 3-4 years…A couple molars have crumbled and had root canals and crowns! Dental insurance sucks and doesn’t pay much. The cost of all these repairs is killing me.”

Living with multiple myeloma often means maneuvering through a complicated labyrinth of treatments and medications. Zometa, a drug used to prevent skeletal issues in patients with certain cancer types, is one such remedy. It is also known as a class of bisphosphonates which function by decelerating the process of bone degradation. However, it can also result in a condition known as osteonecrosis of the jaw, where the jawbone begins to weaken and decay. This condition is typically linked with invasive dental procedures or treatments, but it can also occur spontaneously. In my situation, it appears that the long-term effects of this zoledronic acid may have potentially contributed to this unforeseen bone fragment.

This treatment protocol was administered to me as part of a clinical trial when I was initially diagnosed in 2017. I recall receiving it at regular intervals; I finished the treatments in November 2020, under the impression that its effects would terminate with the conclusion of the treatment. However, the oral surgeon enlightened me that Zometa could linger in the body for years, persistently impacting bone health.

A study published in the Journal of Clinical Oncology in 2007 shed light on the prolonged presence of bisphosphonates in the body for up to a decade after the last dosage. This extended duration can continue to affect bone metabolism, potentially resulting in complications like unexpected bone fractures or osteonecrosis, as observed in my case.

Another friend was prescribed an alendronate, commonly known by the brand name Fosamax, which is also a biphosphonate. It decreases the rate bone cells are absorbed. This reduced absorption allows the body to increase bone density, which in turn reduces the risk of fracture. After research, my friend decided not to take this medicine and chose to follow a natural approach. After a year or so, her condition considerably improved from osteoporosis to osteopenia.

This incident has prompted me to question the value of using Zometa for multiple myeloma. While it undeniably offers benefits, the potential long-term effects on bone health are worrisome. It becomes a delicate balance between managing the immediate risks of the disease and considering the consequences of the treatment. Although I cannot turn back time, it is important to ask questions until we understand and until the answer resonates with us.

My own encounter of discovering a fragment of my jawbone in a salad served as a vivid reminder of Zometa's enduring impact on bone health. While the drug plays a vital role in managing specific health issues, it's crucial to be cognizant of its potential long-term side effects, even years after stopping its use. This episode highlights the significance of routine medical examinations and transparent dialogue with healthcare professionals regarding previous overall physical conditions, to guarantee the best possible health management. After all, navigating through multiple myeloma isn't solely about survival, but also about thriving despite everything.

I didn't know that a side effect of bone strengtheners could be jawbone detachment.

Ronald Chin

Recognizing and Managing Stress from Cancer

Balancing Act: Navigating Self-Image, Autonomy and Rehabilitation After Cancer

Songs That Uplift During Cancer Recovery

Side Effects of Bone Strengtheners: Multiple Myeloma

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