Munira Premji

Tuesday, January 17, 2023 — Today I started Cycle 2 of my treatment. Initially, there are a total of 6 cycles with each cycle being 4 weeks, for a total of 24 weeks of treatment, before continuing to once-a-month treatments for as long as the multiple myeloma is beaten back and kept suppressed. Yesterday, Nagib and I met with Dr. Suzanne Trudel and Dr. Anup Devasia, my new doctors at PMCC, and the preliminary results of Cycle 1 surprised us all — the number of cancer cells have decreased significantly – from only 4 treatments…Woo hoo! I am inspired to start Cycle 2 with a different mindset – the Surfer’s Mindset or the Surfer Mentality. I recently heard about this concept from Sahil Bloom (@sahilbloom), who writes The Curiosity Chronicle, a weekly newsletter about growth, decision-making, life lessons, etc. (Check it out as he posts really good stuff).

This past month, I took notes of how I was feeling and started looking at patterns and trends. Here is what I found: When my appointment is on Tuesday, I feel great starting Tuesday afternoon (when I have a shot of Dexa in me!). Wednesdays and Thursdays are great also. It’s on Friday that I start to get tired, with a full-on crash on the weekend (when the Dexa has worn off). Mondays are okay days. Every 4 weeks, I get one week off from Revlimid, a pretty toxic drug which causes fatigue and low blood counts. During that week, I feel fine as the side-effects and tiredness are reduced. The big issue for me right now is food. Most things taste like sawdust and I have to force myself to eat for energy. The tiredness can be an issue on days when I’m not on Dexa.

So how does the Surfer’s Mindset come in? I’m still working through this and how it resonates for my journey – here is what I think so far. Based on all this data, I’ve identified that I have a few good days and a few bad days. Like a surfer, I make the best decision based on information on today’s tides, tomorrow’s forecast and how I’m feeling. What I know is that the mindset guides me on how I want to approach the day. On my good days, I will live my life with gusto and passion and surf the waves, metaphorically speaking. On these days, in my mind’s eye, the sun is shining, the waves are perfect and I’m raring to dive into the water to ride those waves. For me, my optimal surfing days will mean I may take on some work, socialize with friends and family, learn, put myself out there, and work on all the many projects I have wanted to embark on. Ask any surfer and they’ll tell you you can’t catch any waves while coasting in the shallows on your board or sitting on the shore forever. The beauty is that I get to decide what waves I want to catch based on what matters to me – I pick the beach, I pick the wave. I love the endless possibilities these choices imply.

As I begin to adopt the mindset, I think the key is being willing to grab my board and head to the beach! The way I see it, surfing is full of challenges, obstacles and tough conditions. Just like life – where there are tough days, frustrations and dangers. And just as getting caught in a rogue monster wave doesn’t last forever, there is something incredibly hopeful to know that the hardships of life will also pass. Part of experiencing the full gamut of being human is to embrace all of life – the highs and lows. That’s how I plan to live. I’m willing to get out on the days my body feels great despite the uncertainty of the outcomes.

I think the Surfer’s Mindset is also about being humble enough to accept that there may be accidents and crashes along the way. Perhaps the treatment will stop working; perhaps the bad days will outweigh the good ones. But for right now, with the data I have, I see no option but to show up and live life (the alternative is to wallow and feel sorry for myself). If things change, I will need to select different data and chart a different course. Life is, after all, a process of adapting. Things happen and then more things happen and we just need to embrace the process, and figure out how to get back on the board, surf the waves and be present in that moment. I accept that I may head out to the beach, board in hand and the sea is calm with no waves to speak of. I might be ready to surf but the universe isn’t.

And what happens on non-surf days, on crash days, on days when I just want to stay in bed? I am visualizing making the most of these days reading and journaling, healing and doing only what my body needs. I am anticipating long naps and self-care. Listening to my Calm app. I might take up yoga. On down days, I have noticed that I reach out to fellow myeloma patients and the community. They encourage me to “keep on keeping on”, offer me information to help me through the journey, remind me of how far I have come and give me space to vent if I need. There is so much power in connection and community. Surfers know how to rest their muscles and take time to care for their boards and I will embrace the down time in a similar way.

The Surfer’s Mindset will require commitment, intention and attention. Just like life. I expect that some waves will bring joy, some waves will bring uncertainty. Through this, I will live my life with my board in hand and be present for whatever shows up. Because life is indeed a series of waves. Hang Ten, Dude!

– Munira