Author: Munira Premji

Girlfriends

The concept of ‘girlfriends’ had always been strange to me. I had a couple of friends in elementary and high school. A few more between high school and university. But no best friend. Nobody that I would share my deepest thoughts, plans and secrets with. In many ways, my mum was the closest to a best friend I had growing up. As I got older, I met people who I became friends with, met for coffee, shared life stories and discovered common interests. Most were colleagues from work, some were people I met through the community.

And then Sabrina happened. When she was a child we did tea parties and read Dr. Seuss and went to baseball games. As she got older, we delighted in spending time with each other and made every minute count. Sabrina gets me. She is surprisingly unlike me, which is probably what makes our relationship happy and interesting and uncomplicated. When Sabrina moved to Africa, we had a going-away party for her where she announced that she was looking for a best friend for me and was happy to interview potential candidates. I under-estimated how very much I would miss not having my best friend to hang out with.

The diagnoses of cancer have brought unexpected blessings my way. Friends, old and new, started reaching out to me. Slowly, slowly, I let down my guard and allowed many into my life. This was a new feeling, a bit scary, a bit daunting. I understood instinctively that having great friends is about being a good friend and this takes time and effort. It’s also about being vulnerable, showing parts of you that are not all put-together, and trusting your story with others. That’s part of the reason why it took me 50+ years to do it, even as an extrovert. It takes courage and patience to build deep, meaningful connections.

Today I am blessed to have many girlfriends and relationships that I cherish. My girlfriends range in age and interests; some I connect with individually, some together, some I see often, some rarely, some virtually. They have expanded my world in so many ways and have helped me find a new normal during my complicated relationship with cancer.

Girlfriends bring a new dimension to a relationship. And while I have a pretty fabulous husband who is the love of my life, and a son who I love with all my being, there is something about having a strong contingent of women around me that make me whole. (On a separate note, I have often told my son that when I speak with him, it’s as therapeutic and satisfying as speaking to a best girlfriend!). My surprising discovery is that women connect with each other differently than we do with men. My girlfriends can read my mind and emotions and intuitively know what to say. They are there to listen and empathize, offer perspective, challenge me when necessary and provide a shoulder to cry on. They randomly send WhatsApp messages of encouragement and shared interests (recipes, music, quotes) to nurture the relationship. When one of us is hurting, the other lifts them up; when one succeeds, it is like we all succeed. We talk about our feelings, our hopes and fears, death, cancer, work, family, career, triggers, fun things. It’s this hodgepodge of trivial and meaningful that is so precious. But the best part of my relationship with my girlfriends is the laughter – loud, contagious, spontaneous; the type of laughter that gets noticed by others; the type of laughter that stays with me well beyond the interaction.

To all my girlfriends, I say a big thank you for bringing so much joy in my life. You rock!

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The Sweet Spot

May 24, 2019

How do you decide when to start treatment?

Do you wait until you experience symptoms from the cancer?  For multiple myeloma, these could potentially include renal failure, bone lesions or anemia (including hyper hemolytic anemia — which nearly killed me in March 2012).

Or, do you start treatment before the symptoms manifest, when your body is healthy to go through chemotherapy?

That’s the position we find ourselves in.  I asked Dr. Tiedemann point-blank what he would do if he were in my position.  His response, “I really can’t say definitively.  I can make a case either way.”  My myeloma has a personality and a mind of its own.  After it declared itself and made its grand comeback, it has started to behave and the numbers have remained steady over the past six weeks.  Treatment or no treatment?  Some markers lean toward starting treatment immediately; other markers suggest a “watch and wait” approach.  We talked through the options with Dr. Tiedemann until we came to an agreement that we were all comfortable with.

The plan is for me to get a skeletal x-ray immediately to rule out any bone lesions, get bloodwork every two weeks to monitor any significant drop in hemoglobin and pay attention to the M-protein numbers.  And we have a scheduled appointment with the doctor in 4 weeks to revisit the question of treatment date, the sweet spot that is neither too early nor too late.

I am happy with this development.  Starting treatment for myeloma now could impact the regimen that I am currently on for breast cancer as my body would be immuno-compromised.  I also see this as an unexpected blessing of time.  I had fully expected when I went for my appointment today that Dr. Tiedemann would want me to start treatment immediately.  Now I have bought myself potentially another 4 weeks (maybe longer) depending on how my impish, unpredicatable and mercurial myeloma behaves.  4 weeks of time where I had freed myself of all obligations. 4 weeks of no commitments. 4 weeks of bonus time. I am beside myself as I think of all the things I can do during this time.

Perhaps I can use this time for delicious coffee dates with friends. Perhaps I can learn a fun new skill like salsa dancing.  Maybe a trip to Edmonton and Calgary to meet favourite cousins is in the offing. I am excited about a project of decluttering our home from top to bottom.  Or getting a personal trainer for the first time in my life.  Or working on another collaborative recording of devotional music.  I am thinking about a day of working in the garden, planting and pruning,  Or I could binge-watch Game of Thrones, as I seem to be the only one in the universe who hasn’t watched this show.  I plan to read a lot, go to baseball games with Nagib and try new Instant Pot recipes.  The possibilities are endless and entirely exhilarating!

Out of curiosity, what would you do if you had a full month at your disposal?  How would you spend your time and energy?

It’s all in the numbers

Monoclonal immunoglobulin, or more commonly known as M-protein, is one of the telltale signs of multiple myeloma. I have been sitting at or near zero since my stem cell transplant six years ago.

April 2019

3.2 – my M-protein level detected in June 2018 at a regular bloodwork appointment. Monoclonal immunoglobulin, or more commonly known as M-protein, is one of the telltale signs of multiple myeloma. I have been sitting at or near zero since my stem cell transplant six years ago.

6.5 – my M-protein level in September 2018. Something’s brewing in my body.
Dr. Tiedemann has said not to worry until it reaches double digit numbers, so I take a deep breath.

12.9 – my M-protein level in Jan 2019. I finally muster the courage to tell Shayne and Sabrina.

16.4 – my M-protein level in April 2019. The writing is on the wall. My myeloma is making a comeback. Treatment is inevitable.  4 months of chemotherapy. A second stem cell transplant.  3 to 6 months of recovery. My mind begins recollecting difficult memories of depleted energy, blood transfusions, hair falling out, yo-yo emotions and hospital stays.

“Can I start treatment in August?” I ask Dr. Tiedemann. I had planned a trip to Nairobi in July for a delicious month of hanging out with Sabrina for precious mother-daughter time.  A time to enjoy long hikes and bake muffins, of deep conversations in pyjamas and mini getaways.

Dr. Tiedemann listened to my plan and shared his concerns that if I wait until August, I run the risk of bone lesions and kidney failure, common symptoms of myeloma.

Shayne had the brilliant idea to move my trip up a couple of months. We secured dates for May and I felt a sense of energy and excitement to pack my bags. I’ve always been a believer in “ending before you begin”, and time with my kids in Nairobi would be the perfect way to “end” before I begin a year of treatment.

As quickly as the excitement rose, it burst in a giant, unanticipated pop. At an appointment with my family doctor, Dr. Baghdadlian, the following week, my hemoglobin showed a sudden drop to the 90’s, the nose bleeds began and I started to feel tired. This was similar to how I was diagnosed with multiple myeloma all those years ago. Given my history, my family doctor, who is also an infectious disease specialist, forbade me to travel. I called the kids with the news.

I asked my family for space and permission to just be, without questions or judgement while I processed what was happening to me.  I cried.  I slept a lot.  I prayed.  When I was ready, I spoke to Nagib, Shayne, Sabrina and Afzal.  We talked about options, about how everyone was feeling and how we could support each other.

After nine days, I pulled myself together and started to see my situation in a different light.  On average, a stem cell transplant lasts for 3 years (3.5 years if you are on maintenance drugs).  My stem cell has lasted 6 glorious years without maintenance drugs.  Myeloma is an incurable cancer and there was no question that one day the cancer would come back.  The fact that it took so long to return is indeed a blessing.  Dr. Tiedemann also reminded me that this time I would not need to get my stem cells harvested, which was a huge issue six year ago when my body refused to produce enough stem cells for the transplant.  Now I have a bag of stem cells just sitting in a frozen container on the 12th Floor of Princess Margaret Hospital, waiting for me when its transplant time.

The only question now is when do I start treatment.  Every two weeks, I get bloodwork done that will determine the optimum time to begin chemotherapy.  If I were a betting person, my guess is that I will begin chemotherapy in the next couple of weeks.  In the meantime, I am preparing my body to deal with the ravages of chemotherapy by working out and eating right.

After dealing with 3 cancers, my approach to this latest saga is to succumb and surrender to the will of God, and to do so joyfully.  Mentally, I am ready for what comes next. Emotionally, I am prepared. Physically, I am a bit tired.  Now I wait.

Photo: Cape of Good Hope, South Africa, the most South-Western point of the African Continent, according to the numbers (February 2019).

You Have All the Time You Need

Instead of saying “I don’t have time” try saying “it’s not a priority,” and see how that feels.

Ever have a quote pull you in like a magnet?  I saw this quote show up on my Facebook feed last week and I can’t get it out of my mind.  It goes,  “Instead of saying “I don’t have time” try saying “it’s not a priority,” and see how that feels.  This quote is by Laura Vanderkam, Wall Street Journal writer and author of several time management and productivity books.

This quote has made be super conscious about the way I think about time. So when I say, “I don’t have time to do the laundry (because it is not a priority), or “I don’t have time to watch the latest episode of the Young & the Restless (because it is not a priority), I can live with that.  But try this:  “I don’t have time to work out (because it is not a priority)”, or “I don’t have time to floss (because it is not a priority)”. Or, something I heard from a friend of mine recently, “I don’t have time to get a mammogram (because it is not a priority).”  Very jarring!

Time is a choice and each one of us has the exact same time to spend each day.  Yes, life is infinitely fair in this matter; it is an equalizer.  We have the same time as Beyonce, the same time as Oprah, the same time as our hero or role model.  It is what we choose to do with this time that makes things interesting.   Equally interesting is the phenomenon that time is elastic.  We can always find time to do things that matter to us.  Think about it.  While time is finite, there is always time to be had for what matters to us.  It is when I finally absorbed this concept, that I started to see time as a friend, and not as a  competitor.   It’s no longer about time management, rather it is about time abundance.

How do we know what matters to us?    Again, Laura Vanderkam, in her Ted Talk: How to gain control of your time, suggests that we spend a few minutes every Friday afternoon making a priority list, in three categories: professional, relationships and self.  Professional is about improving in our career or school.  Relationships could involve having a coffee with a friend.  Self is about doing something that fulfills you, like playing golf or having a pedicure.  She suggests putting 2 or 3 things in each of these categories and making a conscious effort to schedule that into your calendar for the week.  Simple, yet impactful.

As I put this into practice, I am realizing that sometimes it means giving up something in my life (that is of little value) to make time for something else.  Not always easy but so satisfying at the end of the day when I see the impact on my work, my relationships and my self.  No longer am I going to use the excuse that I am too busy.  I now know that I have all the time I need, I always have.  I simply need to decide how to use it.

Cheers!

Things To Be Happy About

There was a book on the table outside The Princess Margaret Cancer Centre’s store that winked at me.  It was called, “14,000 Things To Be Happy About.”

I immediately picked it up and started leafing through it.  The book was written by Barbara Ann Kipfer over a 40 year period, starting when she was in Grade 6.   Some of the entries created wonderful images for me (the sound of an ice cream truck), some made me reminisce (the smell of freshly baked bread) and some I could not relate to (mugs of soup).

https://www.thingstobehappyabout.com/

So I started to think about all the things that make me happy – the little things, the big things and everything in between.  Within minutes, I exploded with 10 things that make me smile:

  • St. Petes/Clearwater in Florida makes my belly-button happy. There’s something so whole and healing when I step into its warmth.  My heart, my body and my spirit feel connected when I walk on the beach, feel the sand in my toes and marvel at the emerging sunset.  These moments are as close to heaven as I can imagine.
  • Saturday morning dates with Nagib. This is my all time favourite weekly activity and a sacred time for the both of us.  It is time that we use to reconnect, talk, share, eat, make plans, share perspectives, argue, agree, discuss life.  Each Saturday, we try out a new breakfast haunt courtesy of Yelp.
  • I am the Queen of Gadgets, except I don’t always know what to do with the new toy after I buy it. My Instant Pot is an exception. Every day, I enthusiastically tackle it and try a new dish –  sometimes it works, sometimes it doesn’t – but it gives me a sense of achievement when I can start cooking, and have something edible at the table in 30 minutes, without breaking a sweat.
  • Good books and podcasts sustain me. In the past month, I have been transported into the world of princes and princesses, sword fights and giants.  I have slipped into the mystery of Arabia, dived into questions around why the world has turned its back on migrants, explored the topics of perception and misconception and learnt the fascinating story of Instagram.
  • Waking up each morning at 4 am to meditate. Just magical!
  • Connecting with Shayne, Sabrina and Afzal on WhatsApp. Waking up to delicious messages and voicenotes from them almost every day. Being so connected with them and being part of their lives, in spite of being a continent away.
  • Stephen Colbert makes me happy. He is my guilty pleasure and I am addicted to his late night show.  I love how he confronts hypocrisy; how he helps to make sense of the craziness in the world and how he does all this with humour, sarcasm and an elegant grace.  One of my bucket list items is to see him live in New York.
  • Technology thrills me, even though I have a long way to go to become technologically savvy. My laptop, iPhone, wireless speakers, wireless phone charger and Fitbit are my favourite tools at the moment.
  • Music takes me to new heights. Shayne bought me a one-year subscription to Spotify and now I have all this incredible music at my fingertips to love and explore.  I listen to old favourites that move me; to the familiar sounds of Sade, the Beatles and Michael Buble; to the classical flamenco guitar sounds of Ottmar Liebert.  As I become more adventurous, I am downloading music for sleep and working out.
  • Spending time with my mom makes my heart happy. My mom is the centre of our universe and I revel in the time I have to learn from her, to cook with her, to be around her energy, to delve into her wisdom.  I feel like the luckiest girl in the world to have time with her.

And as I finish this post, I can easily think of at least 10 more things that make me happy today.  That’s because gratitude begets gratitude.  And when we choose the path of gratitude, in spite of difficulties and challenges, the gratitude meter inevitably expands and there is even more to celebrate in life, starting with the blessing of being alive.