Munira Premji

Four Thousand Weeks

January 25, 2023. Today is my birthday – the day I was born, 64 years ago. I have no idea where the time has flown and how I’m in my ‘sixties’ – I feel so much younger. I also celebrate two additional birthdays: February 15, 2013, when I had my first stem cell transplant and Munira Version 2.0 was born. And on November 22, 2019, I needed an upgrade of my operating system and had a second stem cell transplant, where a feisty Munira Version 3.0 emerged, with bells and whistles. Today, on my actual birthday, I was at the hospital in the morning for treatment. My nurse was, quite fittingly named Joy, and she greeted me with a big, loud “Happy Birthday, Girl!”. She gave me a bed (usually treatment is administered on a chair) and wrapped me with a heated blanket because “it’s your birthday and you deserve special treats.” Yesterday, when I went to the hospital to support a friend who is also going through myeloma, I reconnected with Tasha Murji, the incredible nurse who did my second stem cell transplant. As we recounted that experience, Tasha enveloped me in a tight hug and I was reminded that these small kindnesses – like a warm blanket or hug – make the world a better place.

Birthdays invariably get me thinking about the passing of time. Ever since I was diagnosed with cancer, I have had an interesting relationship with time. Eleven years ago, my prognosis was dismal with two advanced cancers ravaging my body. I was staring mortality in the face and thus began my quest to explore how I would use my remaining time on this Earth. Back then, the prognosis was 2.5 years on average before the multiple myeloma would come back.

At first, I went crazy filling up every moment in my calendar. I did not want to squander what precious time I was afforded. This worked for a little while. I felt I was productive. In fact, I was just busy going from one thing to another, not feeling entirely fulfilled. Many nights I would cry myself to sleep in exhaustion. I had lost so much in terms of confidence, identity and independence that I felt I had to prove myself by doing, doing, doing. I needed to feel that I was still worthy. As I have matured (ummm!), I now get how our worth is not based on accomplishments or social status or how much money we have, or life events. Worthiness, the concept of being enough just the way we are, comes from a place of intrinsic worth. Learning how to claim my intrinsic worth – – accepting myself wholeheartedly, without conditions, warts and all – – was one of the most powerful parts of my growth through my cancer journey.

I now have a healthier relationship with time. So much of what I do now is reflected in a book written by Oliver Burkman entitled Four Thousand Weeks: Time Management for Mortals.” Burkman starts his book with a intriguing premise: “The average human lifespan is absurdly, terrifyingly, insultingly short.” He says on average, we will live to be 80 years old, which gets you 4,000 weeks. That’s it. 4,000 weeks. That’s all that we get. And if we accept that we only have a finite number of days, it behooves us to think about how to spend this finite amount of time in a way that will make our lives as enjoyable and meaningful as possible. Burkman’s assertion is that we need to accept and embrace our mortality (what he calls life’s finitude). It is only when we do this consciously, that it frees us to focus our time and attention on the few things that actually matter. If we don’t do this consciously, then all we are doing is wasting a lot of time “clearing the decks”, doing the less important things, that take up all of our time. And as soon as we clear the decks, we know it causes them to fill up again faster. And the next day, we rinse and repeat. This is living life on auto-pilot.

To break this cycle, Burkman suggests that we accept the fact that we will never get to do everything we want to do. So let’s not beat ourselves up for not achieving everything, for holding ourselves to standards we cannot reasonably be expected to meet. Instead let’s consciously think about what matters most in our lives – whether it’s a relationship, you want to invest in or giving back to your community, or doing something that you’re passionate about, or maybe a mix of all – and intentionally make time to do this. This also applies to how you choose to spend your time at work or school.

Turning 64 today was a bit of a shock to my system. It reminded me of the adage that the days are long but the years are short; the moments fly, but the memories stay. My birthday was a perfect example of how my family went out of their way to make it extra special for me. Nagib treated me to the magical performance of Harry Potter and the Cursed Child, a gift that will live in my memory for a very long time. Sabrina, Afzal and Amaal braved the weather so we could spend the evening together. It took them 2 hours to make the usually 20-minute trek to our home but they never wavered in their commitment to make this happen. Even Amaal and Mos got in the act and sang “Happy Birthday” to me (yes actually!).

Mos and Amaal singing Happy Birthday

I am feeling loved and supported for the choices that my family made today and it doesn’t get any better than this. The truth is, it doesn’t matter how old you are or what stage of life you’re in – we could all benefit from reflecting on our finitude and asking ourselves how we will choose to spend our time, because you can’t get everything done. It is the choice we make every moment that determines the quality of our lives. So, what choices will you make for your one precious and wonderful life?

The Surfer’s Mindset

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

Deep Meaningful Conversations

Wasaga Beach, Ontario – December 27, 2022. One of my most favourite holiday traditions is to come together as a family and reflect on the past year, and talk about the new year. This year it started on Christmas Eve over tea and cinnamon rolls. I put 10 questions in a box and we each picked a question to ask everyone. The questions ranged from, “what is it that you like most about yourself”, to “what is a fear that is holding you back”, to “what causes you stress and how does that show up for you?”. And as we reflected on these questions, there were many surprises and the discussions became quite animated and engaging. It was a powerful way for us to understand each other better, which I think contributes to stronger relationships.

Treatment #2 went without a hitch, no major reactions, no side-effects so far. After the treatment, we headed to a friend’s cottage at Wasaga Beach for two days. At the cottage, Cherrelle introduced us to a Dutch Christmas tradition – the feast of Sinterklaas, which is celebrated on December 5 or 6. The story goes that Sinterklaas (Saint Nicholas) carries a book where he reports on children’s behaviour throughout the year. He is feared and admired by the children of the Netherlands. If you are good, you get gifts. If you are bad, you are put in a sack and Sinterklaas’s helper, Piet, carries you away to Spain. So Cherrelle wrote a poem for everyone in the immediate family (signed by Saint Nicholas), that told something about the person and also highlighted gentle advice. The poems were written in a Dr. Seuss style, complete with rhyming. Each person read their poem aloud, amidst laughter and loud cheers. It was entirely too much fun and highlighted for me that I had better be careful what I do around Cherrelle, because she notices everything!

We also resurrected another tradition of Sabrina asking her grandmother, Nanima, to describe different aspects of her life. My mom is 92 years old and has lived a very long, very full life. She is the matriarch of our family and loved absolutely. She talked about a teacher she remembered when going to school in Mombasa, the most profound thing she learnt as a child, and her best birthday experience.

After the grandkids were put to bed, we watched a spectacular movie on Netflix, The Swimmers. It is an epic true story of two sisters – competitive swimmers – who were forced to leave Syria in the midst of the Arab Spring uprising. It is a story of hope and passion, adversity and resilience, sadness and triumph, opportunity and commitment, and above all, love. It made the refugee experience come alive for us in a powerful way and I think we were each impacted, in some way, by watching this gripping story. Please gather your family around and watch this movie together for a shared, human experience. Did you know that there are about 30 million refugees around the world, most of whom under the age of 18? This is a real and daunting challenge for society.

Tomorrow, we will talk about 2023 using the Wheel of Life, something we have done over the past several years. It is an effective way to evaluate and talk about our lives based on different categories. What I love about this activity is that it gives us insights on one or two priorities we want to focus on in 2023, why it is important to us and how we can support each other with these objectives. And we will end with 3 big questions, courtesy of the International Coaching Federation (ICF):

  • What brings you the most joy and how are you going to do more of that?
  • What would you try if you knew you could not fail?
  • What do you want to let go of that does not serve you?

Wishing you and your family happy holidays. Time to be present with each other, moments of laughter and merriment, hot chocolate, snow angels, tobogganing, hot tomato soup made from scratch with sourdough bread, peace and harmony and above all else, love. Cheers to a happy and healthy 2023!

– Munira

I wrote about the Wheel of Life in July 2012. Please click here to read the post:

The Wheel of Life was also the subject of a workshop I conducted during 2020. Below is an excerpt from the YouTube series Reignite Your Purpose: Conversations with Munira, a 6-part series hosted by The Ismaili Canada in 2020:

A Regular Day at the Hospital

January 3, 2023 – – Today was Day 3 of the new treatment at the Princess Margaret Cancer Centre, and I am beginning to get into the routine nicely. Weekly hospital visits on a Tuesday. Lots of pre-meds prior to going to the hospital. Waiting in the Chemo Lounge (now called the Systemic Therapy Unit!) and being given a buzzer when you register (like you get at a restaurant) When the buzzer beeps, you go back to the registration desk and they tell you where you will be treated that day (I was in the Purple Pod, Seat 8 today). Today, when I walked into the Purple Pod, I witnessed 24-year old Mustafa preparing to ring the Bravery Bell, which signals the end of treatment in their current battle with cancer. His dad was with him, nurses from the unit showed up, and I just cheered him loudly because I remember ringing that bell so hard multiple times in the past 10 years. Each time, it was a symbol of how far I had come. I asked if I could take a picture to remember this milestone event in his life. They graciously (albeit confusedly) agreed.

Mustafa with Munira at the Bravery Bell.

In the Purple Pod, I was greeted by an exceptional nurse who took my vitals, asked questions about how I was doing and then administered the Daratumumab in my abdomen. Then there was a wait for 20 minutes to make sure there was no reaction, and I was ready to go home. So it seems like my weekly visits take only about 2.5 hours, which gives me a full day to get on with other stuff in my life. And on treatment days (and the day after), I get Dexamethasone, which makes me very happy. While on Dexa, I take advantage of the fact that I cannot sleep until 4 am, and become uber productive. In no particular order, here are some of the things I have done while on Dexa:

  • Went tobogganing and did a snow angel for the first time in my life.
  • Cooked brand new dishes because nothing seems impossible while on Dexa – a pasta dish with lemon butter sauce for the family, chicken pot pies and mac and cheese from scratch, Greek-inspired chicken bowls, green beans with butter and almonds (who even makes this?!). Every once in a while, Shayne and Sabrina would laugh and say: “Who are you and what have you done to our mother?!“.
  • Wrote 4 blog posts.
  • Designed a Change Management workshop that I will be facilitating for a client on January 12 (I have no idea if the Dexa-inspired design is brilliant or disjointed and have sent it to a trusted colleague to give me feedback).
  • Binge-watched Emily in Paris.
  • Cleaned, organized and decluttered the kitchen from top to bottom.
  • Participated in an interview with Patient Voice to share my story.
  • Signed up to become a certified trainer for Lego Serious Play in 2023.

Why waste a perfectly good cancer?

I have also found that I have needed to take a break when my body is fatigued, and the Revlimid is causing different side-effects that are not so fun, mostly nausea, diarrhea and fatigue. The side-effects are significantly less than what I had experienced during chemo. My appointment on January 16 will be an indication of how my body is responding to this new treatment, and I continue to remain optimistic and hopeful.

As we begin a brand new year, I wish that wherever you are and whatever your challenges, that you get to ring your victory bell this year. May it be a year of kindness to yourself, a year of acknowledging your brilliance, of accepting and embracing your experiences and of living each moment of your life.

Living in the moment

Being around Mos and Amaal is a delightful reminder that life is about living in the moment. These two precocious 18 month old toddlers have no concept of the past or future. They just know to live in the present. And when we venture into their world, fully-present, the world looks different, like a kaleidoscope of magic and wonder, and “oh my God, did she just say, ‘Hey Google'”, to giggles and hugs and singing “Wheels on the Bus” at least 10 times a day.

Amaal’s sole purpose for the past week has been to make sure that Mos was properly hydrated. She kept pushing his water cup to him insisting that he drink water, multiple times a day. Mos complies for a while until he has had enough and insists that she give him his pacifier.

Their most favourite person in the world is “Opa”, aka, Nagib. Yesterday, they could not find him as he was working in the den, and there was a full-out “Operation Find Opa”. They went from room to room looking for him. They knocked on closed doors and conspired to pick locks to find their beloved Opa. When that didn’t work, they started to yell “Opa” at the top of their little lungs, louder each time, until he emerged and got the biggest hug from both of them. We were all like, “awhhhh!” This is what living in the moment looks like.

Mos is a builder, an architect, constructing things. He is also a climber. I see a future for him as Director of Play for Lego. He finds new and unusual ways to play games. Yesterday, he took cans of coke zero and stacked them, one on top of the other, just like lego blocks. And even though we knew that eventually a can would crash down and burst (which it did and scared the hell out of him), we were mesmerized by his singular level of concentration. Amaal likes rules, and wants everyone to follow the rules. I love how she uses validation in communication (Mummy: “Would you like a yogurt, Amaal? ” Amaal: “Yeah mummy“, followed by big claps that her mom got it right). They are both incredibly expressive and display their emotions fully, whether it is joy or annoyance. I love how Sabrina and Afzal names the emotion she is noticing them display and how Cherrelle, as a meditation teacher, is teaching them to breath when she sees them upset. This is what experiencing the moment looks like.

I cannot get over Mos’s and Amaal’s desire to have their voices heard. If you ask them a question, they will give you a full-on answer in their own babble, highly articulate but not yet understandable by us adults. We have a lot of fun interpreting what they are saying, and responding in kind (“you don’t say!”, “we don’t disagree with you”; “you make a great point!”, “tell me more!”). They have also learnt how to say “no” – vehemently. These kids have boundaries.

Mos loves bread. Amaal is a yogurt lover. Mos is mesmerized by cars. Amaal loves to sing. Mos is a charmer. Amaal has that cheeky monkey look when she does something questionable. Mos likes doing things solo. Amaal is a social being. They each have a dreadful carbon footprint with each of them having taken 15 or more international flights within their 18 months of life. I guess that’s about living in the moment, too.

I see Nagib in his element as he teaches them about patience and moderation, and sharing and caring. And it takes me back to 30+ years ago when he did the same with Shayne and Sabrina. He is the arbitrator in chief when they fight over one book or one car. It does not always work but they do listen to him. He has learnt all the characters from Paw Patrol to engage with them. He takes them to the park. He has befriended every dog in the neighborhood in spite of his fear of dogs, because they love dogs. This is what enjoying the moment looks like.

I am beyond amazed at how fast their brains are growing. Every day, a new word, or many words. Every day, new connections. Every day, muscle memory as they remember stuff from the day before. The science is that 90% of brain development occurs in the first 1000 days of life, including the 9 months that the baby is in the womb. I witnessed part of this development first-hand today when Aunty Mary Gemmiti gave them a book, “1000 First Words”. When I asked them to point out pictures of elephant, banana, book. apple, hat, bird, ant, bus, etc, in the book, they were able to do it effortlessly, with at least 50 words at last count. It blew my mind. That’s what learning in the moment looks like.

Mos and Amaal have inspired my word/phrase for 2023, something I give great thought to each year. I had considered words like health and vitality, energy, resilience. Instead, my word/phrase for 2023 is to be present” because that is what living in the moment is all about.