In February 2012, I was diagnosed with two cancers of the blood, Stage 4 Lymphoma and Stage 3 Multiple Myeloma. This blog is an attempt to share my journey, learnings and insights with you through this process. Continue reading
February 14, 2015 – Toronto.
I am looking at the flowers that Nagib brought me to the hospital on Valentine’s Day two years ago. I was on the 14th Floor of the Princess Margaret Cancer Centre in the stem cell unit, preparing to undergo a stem cell transplant. I remember being nervous and excited, hoping that the stem cells would settle happily in my body and start functioning. Nagib brought the Valentine’s Day spirit to the hospital ward and we marked the occasion together – tired, hopeful, cuddling, crying, laughing and making dreams for the future. And he brought me flowers – not real ones because they were not allowed in the ward – but a wonderful, strong, robust arrangement of white and pink flowers that cheered the room and now sits in our family room as yet another symbol of hope.
It has been two unforgettable years since the stem cell transplant. And as I reflect on Munira Version 2.0, two years later, I am stunned at how far I have come with God’s grace. The chemo before the actual transplant was brutal. I went through the side effects of chemo all over again and experienced everything from brain fog to extreme fatigue, from hair loss (again) to weight loss, from not being able to go to the bathroom to going to the bathroom all the time. Two weeks after the transplant, I saw Dr. Tiedemann and he said that things were progressing well but that I needed to take the time to heal. He told me to be patient.
For a long time, nothing came easy. Walking was particularly hard. Going back to work was out of the question. Slowly, slowly, the stem cells settled and things started to get better. We celebrated every milestone: the first time I could eat a full meal; the first time I could wear heels again; when my hair came back in full force; when Dr. Tiedemann said I could work one day a week.
Fast forward to today. I am working (almost) full time, doing work I love to do! I am able to travel (without having to resort to using a wheelchair). My energy level is increasing and I am not running out of spoons so rapidly. In fact, I have noticed that, on many days, I actually have a few spoons left at the end of the day – and that makes me smile! I continue to go to the hospital for bone strengthening treatment and clinic appointments every 3 months, but other than that, life has returned pretty much to normal.
One of my biggest joys today is seeing my family intact. For two years, Shayne and Sabrina put their lives on hold, figuratively, too frightened with the thought of losing me. Sabrina returned from Africa to take care of me for many months. My mom and sister fed me carrot juice and beetroots, among other things, to will me to health. And Nagib, my love, showed me then, as he does now, what it means to love someone so completely and absolutely.
When I was ill. I made a lot of promises, most that I have been able to keep and a few that I need to work on. I was passionate about wanting to change people’s perception of cancer patients, and I am making some progress on this front. I wanted to seek ways to give back to the cancer community. I am doing this by being part of the Executive Team for the the Toronto & District Multiple Myeloma Support Group (http://www.myelomatoronto.ca/). As well, my family and I have raised more than $50,000 in the past 3 years for the Molly and David Bloom Chair in Multiple Myeloma Research at the Princess Margaret Cancer Centre. Our next MM5K Walk is on June 21st, 2015.
In Africa, Shayne kept asking me the question, “what is your big game?”. This is the question I used to ask Shayne and Sabrina over the years when I felt they were playing small, or not thinking big enough. In the spirit of playing big, and taking Shayne’s challenge, here is what I plan to accomplish this year, God willing, to celebrate my stem cell birthday:
- I will write a book about my journey.
- I will record my third CD of devotional hymns.
- I will make time to spend with people I love.
- Yes, this year I will make fitness a priority.
- I will re-create “Jahazi”, a beautiful space in our basement to hang out and chill.
- I will go back to Africa and support Kidogo at a grassroots level.
- I hope to raise another $20,000 for cancer research.
- We will open our home for people to come and interact.
- I hope to watch a baseball game at Wrigley Field in Chicago.
I am exhilarated by what is possible this year and would love your input. Tell me what I should do, or find, this year – it can be intriguing, fun, crazy, creative. I will take all your suggestions and incorporate it as part of my big game.
Happy Valentine’s Day!
Munira, Version 2.0
Toronto, January 25, 2015. Today I lost another friend. He was a gentle, compassionate man, about a decade older than me. Nazim Hirani was a leader in the community, an admired man, someone you could always count on, a gifted listener with many close friends. Last year, Nazim was diagnosed with Lymphoma, the same cancer I was also diagnosed with in 2012. It was a devastating time for him and his family as they tried to make sense of this disease that had invaded his body and threatened to change their lives.
Nagib and I visited with Nazim after his diagnosis and we were shocked at how much weight he had lost in a short time. He looked like a shadow of himself. Yet, his hospitality – and the hospitality of his wife Yasmin – was impeccable. Each time, they welcomed us into their home with chai and a ton of delicious snacks. They were so loving, so amazing, so wonderful – – to us, and to each other. In conversations, Yasmin would constantly call him “my hero” – it was very cute! During our visits, we talked and we prayed. We shared stories about our cancer, our experiences with chemo, our hopes and our fears. We discussed what remedies to try, what food to eat, what treatments to try. I was surprised at how calm he was and how accepting of his fate. There was no “why me?”, no anger, no turning back. It was just quiet acceptance of what the universe had ordained. And his faith was remarkable. His faith that everything would unfold as it should.
Nazim came into our lives many times in the past. When Nagib was in hospital twenty-five years ago, Nazim was right there patiently waiting outside the door until Nagib could see him. Last year, when I came home from hospital – fatigued, sick, unwell — Nazim had a friend deliver 2 dozen roses to my home with wishes for my good health. That’s just the kind of guy he was. Generous to a fault and always putting others first.
And what an elegant dresser! He loved his fancy pocket squares and matching ties. He looked super cool in his button down “Nehru” jacket. My favourite recent memory of Nazim was seeing him dance with his wife just before he was diagnosed with cancer. They were a phenomenal couple – partners and friends – who treated each other with respect and affection.
Recently, I was in a workshop when the question was asked, “If you could have any superpower, what would it be?” I remember responding to this question with the answer, “Time; I want more time”. When you live on borrowed time and are dealing with an incurable cancer, then time becomes your most valuable commodity. Sometimes I am sad when I see people living life with no purpose, flitting time away, pretending as if time is forever. It isn’t. Today is my birthday. It is also the day that my friend, Nazim, passed away. And I can’t help but be struck by the connection between birth and death.
Nazim left this world with his family and close friends surrounding him. They said 8 hours of constant prayers until God’s light lifted him to heaven above – – what an incredible gift to give to an individual who is transitioning to another realm. And while I feel sadness that the community has lost a magnificent human being, I also celebrate a life well lived. Nazim lived his life to the fullest – a devoted family man, a community leader, a decent human being. He left a wonderful legacy for us all to follow. I know that I will keep his memory alive by making every day, every minute I have matter. Because life is fragile.
#10: She connects with people
One attribute that I have always admired about my Mom is her ability to connect with people. Whether it is a safari driver in Tanzania, a crepe storeowner in Thornhill or a fellow patient at Princess Margaret Hospital, my Mom has this remarkable ability to very quickly and genuinely connect with others. She is truly interested in hearing people’s stories and learning what drives them. She has the perfect balance of positive energy and pragmatism. And as anyone who has had the opportunity to spend time with her can attest to, when you are talking to her, she makes you feel like the most important person in the world.
#9: She’s a learner for life
When I was little, my Mom used to teach me one new word every day. And late into the night before one of my Mom’s workshops, she’d review her presentation with me, talking about Stephen Covey’s 7 Habits, Insights Discovery colour energies and new leadership styles. She has always been a fantastic Human Resources practitioner because she is constantly learning new skills & upping her game. As I’ve grown older, I’ve seen my Mom’s love for learning extend beyond her professional life. Now, when Shayne or I come home, she reserves 1 hour of dedicated, uninterrupted time with us to learn new things — how to download music, how to use Facebook (Shayne edit: sorry, still not accepting your friend request!), what clothing trends are in style, iPad tips & trick…anything and everything! No matter how many birthdays pass, my Mom will never grow old because she’s constantly learning & stretching her brain. As she likes to say, “A mind once expanded, never goes back to its original dimensions.”
#8: She has excellent taste in music
One of my most vivid memories growing up is hearing my Mom channeling her inner Christine Daaé and singing the Phantom of the Opera soundtrack. Years later, she introduced an Ottmar Liebert cassette to her regular rotation and played it every time she vacuumed the house. It is no wonder that 20+ years later, Phantom is my absolute favourite musical, and I still listen to flamenco music whenever I am cleaning. More recently, while in my apartment in Nairobi, she started singing along to the music that was coming from my speaker. “Now this is the music that I really love and miss!” she proclaimed. What was on that playlist, you must be wondering? Jagged Edge, 112 and Donell Jones. And of course, who can forget her propensity for singing and dancing loudly to Kanye West and Jay-Z, while cruising the streets of Toronto in her Rav-4. #coolestmom
I’ve never been quite comfortable in my own skin. Growing up, I never felt smart enough, pretty enough, good enough. I would put on a mask in public, and be exhausted at the end of each day from pretending to be someone I was not. One December evening, while decorating our Christmas tree and talking about life, my Mom said in her wisest voice, “The moment you stop worrying about what others think about you is the day you start to really live.” My Mom is who she is, and doesn’t apologize for it – she is confident, without being arrogant, spirited without being pretentious. Her authenticity, her ability to be who she is without trying to please everyone, is what I admire most.
#6: She invented “pulling a Muni”
Chicago, Illinois – March 2002. One of the reasons we decided to tag along to my Mom’s business trip to Chicago was to be in the same city as March Madness, the annual U.S. college basketball playoff tournament. Tickets had been sold out for weeks, so my Dad and I were satisfied with attending one of the open practices the day before the game. As we were leaving the practice, my Mom asked whether we had checked if there were tickets available for tomorrow’s big game. My Dad and I both laughed and said, “No, because tickets have been sold out for weeks. It’s March Madness!” Even if they weren’t sold out, you had to buy tickets in blocks of four games – two on Friday and two on Sunday – and we were leaving on Saturday. My Mom told us to hold on a sec, while she walked up to the box office. Five minutes later, she came back with a pair of tickets in her hands. Not only did she get tickets, but she somehow convinced the attendant to break up the block and sell us only Friday’s games. The next day, my Dad and I were cheering on as the Creighton Blue Jays knocked off the heavily-favoured Florida Gators in overtime (who were led by none other than the Red Rocket, Matt Bonner). History repeated itself many times over the years, as my Mom repeatedly pulled a rabbit out of her hat in the most improbable of situations. Soon we came up with a moniker for these extraordinary feats: “pulling a Muni.”
My Mom is an incredible life coach. She knows exactly what to say when life hits one of its inevitable speed bumps. But sometimes, when things get really bad – like an unexpected illness…or a bad date! – and words are not enough, she will take me into her arms and hold me tight. And in that moment, everything seems right in the world. That’s the power of my Mom’s hugs.
#4: She made us
Enough said. #ouch
#3: She’s too cool
When I was 16 years old, my super cool Mom sat me down to have a very serious conversation. Her unsmiling demeanor had me thinking I was in trouble. As I braced myself for impact, she said matter-of-factly, “You’re 16 years old. I think you should start dating.” I couldn’t have been more shocked. Isn’t that something the daughter is supposed to say to her Mom! (Shayne edit: I laughed as I read this. When I was 16 or so, I remember my Mom having a similar conversation with me. “Make sure you date lots of girls. How are you going to know what you want in a girl if you haven’t dated many different ones?”) As the years have passed by, my Mom has only gotten cooler. She rocked bright red pants before they were mainstream, she frequently blasts Beyoncé & Rihanna music and can tell you everything you want to know about the Toronto Blue Jays. It’s one thing to have an awesome Mom – it’s a totally different story when your Mom is your best friend. Someone to share clothes with, someone to talk to about your first kiss, someone to give you advice about life. My Mom and my Best Friend are both wrapped up in one beautiful, skinny jeans-wearing, Rihanna-listening woman. I’m so lucky!
Many years ago, I completed an Insights Discovery Profile at the behest of my Mom. One of the key takeaways from my profile was that I was high in ‘Green’ energy. From Insights: People with a high level of Green energy are often concerned with the feelings of and relationships with other people. Your concern for other people’s welfare can often lend personal warmth to a situation. You can be sensitive to the values implicit in people’s actions. I complained to my Mom that I didn’t want to be so Green: “People who are too caring and considerate are seen as weak. And if I reveal these qualities at work, I’ll get eaten alive!” It took a few late night conversations, but she eventually convinced me that my Green energy is a wonderful gift and one that’s shared by many members of my family, most notably my grandmother. When I think back to my favourite memories with my Mom, they are conversations like this one. She sees things that most people don’t and is able to cut out the noise and identify what really matters. And it always comes from a place of love.
#1: She thrives in the face of adversity
When someone hears the word ‘cancer’, life stops. There’s an uncertainty about whether life will ever be the same. When someone hears the word ‘cancers’ (plural), life ends. Weeks in the hospital, pokes & prods that no one should have to endure, trial drugs with unknown outcomes – it’s a path that would test the strength of the bravest. But what does my Superwoman Mom do? She decides to treat hospital visits as social occasions, getting to know each person’s story. She embraces her loss of hair with 13 different wigs. She stops worrying about everything that is out of her control and instead focuses on what she’s going to do when she beats cancer. My Mom is an extraordinary example of courage, faith, bravery and thriving in the face of adversity.
Today, on January 25th, we want to wish our Mom a very happy birthday all the way from Nairobi and New York. We miss you and can’t wait to see how you will change the world this year! Go get ‘em tiger!
So much love,
Sabrina Natasha (aka your bestest friend) and Shayne Aman (aka your partner)
For almost a year we listened to their goals and dreams. As their plans evolved, we heard them become more and more confident about the direction they wanted to take. They wanted to deliver holistic early childhood care & education to families living in informal settlements where there is rampant poverty and limited infrastructure. The questions they grappled with, day in and out, were how they would make this happen, what the business model would look like, where they would find the funding, how they could make this sustainable. Fast forward to September 2014 and Sabrina and Afzal opened their first early childhood care centre in Kibera and, on January 6, 2015, opened their second centre in Kangemi, another slum in Nairobi.
During this trip, after being on this journey with them for over a year, we finally got to see “Kidogo” first hand. Nothing could have prepared us for what we saw. Continue reading
All night long it levitated around my face making that annoying “buzzing” sound, threatening to suck my blood. It deprived me of sleep and made me curious how this tiny little nothing can create so much havoc. I also wondered if they only feed at night, which is when I tend to hear them. I found out that mosquitoes are actually quite complex.
We were driving on a busy road in Nairobi when I saw a policewoman stop a car. Next thing I know, she got into the car with the driver and they drove off. Puzzled, I asked what the policewoman was doing Continue reading
Game changer. Builder. Great sense of humour. Kind. Jolly. Resourceful. Creative. Hard worker. Smart. People person. Go to Guy. A pillar.
Those are the words people used to describe my dad. The last time I saw my dad was when I was 20. He was 50. Two years later, he passed away and I went to his funeral. On Christmas Day, I went back to Moshi, my home town, after 32 years. It was an emotional and exhilarating visit.