leukemia self care treatment mental health cml

Learning to Surf

5/17/2026

Life can be a lot to navigate. From childhood through starting to 'adult'-- paying bills, finding a career, maintaining relationships, friendships, taking care of yourself, finding free time, losses, gains, happy stress, bad stress....it's a lot. If we don't have the proper coping skills for juggling life's challenges, both good and bad, they can sometimes leave us wondering 'how do people do this?' After a lifetime of good, moderate and bad coping skills, I finally felt like I had it all figured out. I was healthy, had a good job, and had good friends and relationships; I just needed to work out a few more kinks and thought 'hey, ok, I think I got it!'

In the middle of figuring it out, I got blindsided by my leukemia diagnosis. What I thought was going to be a conversation with my doctor about cutting down my stress from work and increasing my self-care, instead turned into a referral to a hematologist, which led to a bone marrow biopsy, which led to a cancer diagnosis.

Blood and bone marrow cancer hits a little different than I expected. There is no tumor, nothing to blast away at into smithereens. These cancer cells were EVERYWHERE. Spitting away from my bone marrow into my blood, and as we all know, your blood is in every tissue, organ, and crevice in your entire body. I imagined my bone marrow getting infected with polluted cells, and like an undetected monsoon that had caused the cells to spill over like a storm drain overrun.....filling the rivers and streams of my body with toxic waste. How will it ever be possible to clean up this mess?

I had spent many years seeking for answers on connecting with spirit, managing my emotions, healing myself, and building an extensive toolbox to help others do the same. One important lesson I learned was that the only constant thing in life is change. When you have it figured out, it will change. If things are bad, they will get better. The Universe has a balance, and as we all ebb and flow in this ocean of energy and life, we too must find a rhythm to move with the change.

One of my favorite quotes is from the founder of Mindfulness-Based Stress Reduction (MBSR), Jon Kabat-Zinn: "You can't control the waves, but you can learn how to surf." This quote is packed with lessons on acceptance, resilience, flow, adaptation, and presence. Just as a surfer cannot control the tides and movement of the ocean, we cannot control life's challenges and unexpected events. We can, however, work to gain skills to be in the present moment; skills to ride the waves of mental, physical, and emotional turmoil with grace.

I did actually go surfing once. I was in Maui and decided to join the group and took some lessons, although I was surprisingly weary of the ocean. It was never-ending, unpredictable, beautiful and terrifying all at once. Something told me to do it even though I was scared, that I would regret it if I didn't.

After terribly bruised ribs, falling off more times than I could count, sore legs and feet, and saltwater flooding my nose, finally, I got up. My body started to respond to the movement of the water, my feet tipped back and forth, my abdominal muscles contracted and released systematically to guide my body. I was surfing. In that moment my soul felt free and I was one with everything around me, I could do anything. The moment was short lived when one wrong move caused me to faceplant right into the water. Oh well, what's important is that you get back up.

Today, navigating my current experiences has posed many challenges. The toolbelt I had spent so long creating for collecting life skills to handle these waves seemed to have slipped right off and was sinking to the bottom fast. I was knocked off of my board and drifting in an endless ocean where my feet were flailing, seeking desperately to find the ground. One appointment turned into many, endless lab draws, biopsies, lab results, joining CML groups and Gilda's Club, waiting, telling people, more waiting, second opinions, getting tested for a clinical trial, waiting, researching, and finally starting treatment not knowing how it would go or how I would feel.

I had lost my surfing mojo, now feeling clumsy and distracted. My mind would be pulled by the currents of the unknown, carrying along with it fear, anxiety, and stress. I knew my mind and my body remembered how to navigate these emotions, but now I was in uncharted waters, and it felt cold, dark, and lonely. I knew I just had to keep getting back up, I couldn't let myself drown. Not here, not today.

It hasn't even been two months since my diagnosis, but I feel I am slowly regaining my footing. I have good support and boundaries at work so I can rest and reduce stress. I have an amazing personal support system from family and friends. My quest for knowledge offers plenty of ups and downs including learning about statistics, possible mutations, success stories, and poorer outcomes. Learning that we with CML used to have no hope, it was terminal and all we could do was our best. Now with advances in modern medicine, we have hope. But we are cancer thrivers, not survivors.....yet.

We can't blast that tumor away, but with targeted therapy we can suppress and control the spread of these mutated and toxic cells from spilling over and taking control. There is a saying for those living with CML, 'we don't get to ring the bell', with a book of the same name. The emotions caused by knowing that with CML it will be a lifetime thing, that even if we respond to treatment, become undetectable, and after years can eventually try treatment-free remission, there is always a strong chance it will come back even years later because these cells lurk deep in our marrow and our tissues.... are a lot. Success stories help balance that flow and keep me looking for the sunrise on the horizon.

Knowing that even though we now have life-saving drugs that can allow us to move from a 5-year life expectancy to decades or even a normal life span, they may cause a lifetime of nausea, bone pain, fatigue, resistance, mutations, treatment failure, stem cell transplants... it's a lot. You learn to adjust your focus, seeing the shapes and colors of even more success stories, people with minimal side effects, undetectable in six months, no issues. Living regular lives. This helps with the flow.

When the rest of your life story has been suddenly re-written you have choices to make. You can resist, refuse, drift away, give up and let the cold, murky water pull you down into the dark depths of the abyss. Or you can get up on that board, ankle strap secured, take a deep breath, and start surfing. There is more hope on the horizon with advancements in care, treatment, support and outcomes. We are the single drops creating an ocean of change each and every day, but we must stay the course, we must ride out the storm.

Even if you fall off every time, you have to get back up. Don't forget to look at the beauty of the sunset, feel the wind, take time to taste the ocean salt on your lips. Live your life and ride the waves as they come. You won't be able to control everything, but you can become skillful in adapting to the only constant thing, change. I have been carefully recovering my tools and gently putting them back into place with love. More and more I find I can now reach for these tools, being able to anticipate the rough waters, the fear, the unknown, including the new side effects of starting treatment this week.

It's only been 6 days since starting my clinical trial at Karmanos and a couple of days I feel like I have aged 10 years in that short time. I am starting with the latest and greatest targeted therapy, Scemblix or Asciminib, already out for years and shows great molecular response and the least side effects. My trial is to see if it is beneficial to start with this treatment as opposed to moving to this med only after you have not responded to other targeted therapies. I have my first check-in to see if I am responding to treatment in 9 days.

As I feel the fatigue slowing rolling in, waves of nausea, and bone pain that feels like shin splints crashing into my bones like boulders everywhere, I reach for my tools. I meditate, I do yoga and Pilates, I walk, run, paint to express my feelings, and I am present in the moment, letting go of what I cannot control. Riding the wave, I am learning to adapt.

As I sat in meditation this morning I imagined in my mind's eye an inlet on the ocean surrounded by trees. The winds were blowing, the trees were rustling and the water was rough. Through my own breath and intention, the winds died down, the trees settled, and the water became still. My body melted the tension through my breath, and I slowly became the water gently lapping up against the shore. I gave what I no longer needed back to the earth, drawing renewed energy in to fill myself back up.

I invite you to do what you can to believe in yourself and your ability to face anything life throws at you. Learning to surf takes time, but when you do you can't imagine the view and power you gain from moving with the tides. Do what you can, don't beat yourself up if you fall off, just get your ass back up and try to enjoy the ride.