This monster called cancer

Today is World Cancer Day. It was 6 years ago yesterday, that Dr. Wu gave us the news that would change our lives forever: “You have cancer”.

Advertisements

February 4, 2018.

Today is World Cancer Day.

It was exactly 6 years ago yesterday that I was diagnosed with Multiple Myeloma.  I remember the day vividly.  I was at Toronto General Hospital with Nagib.  We were watching a movie on my laptop, expecting that at any minute the doctor would release me.  Instead, Dr. Robert Wu, the doctor on call, sat beside me with the news that would change our world forever, “You’ve got multiple myeloma, an incurable cancer of the blood.”  Two weeks later, I was diagnosed with Stage 4 Non-Hodgkin Lymphoma, and a month later, nearly lost my life to Acute Hyper Hemolitic Anemia.  And then, in December 2015, I was diagnosed with Stage 3 Breast Cancer.

The ensuing tests and treatments, on and off, over the past 6 years – chemotherapy, radiation, surgery, stem cell transplant, bone marrow aspirations, blood transplants, MRIs, CT and PET scans, mammograms – consumed a big part of my life.  The impact on my family was horrendous.  Some days it felt like we were carrying a boulder up the mountain and the sheer weight of it was too much to bear.

I look at my life today 6 years later and I am amazed at how thrillingly well I am doing; most days its a toss-up between feeling great and feeling awesome!  I take things one or two at a time.  I continue to work but I’m not a workaholic anymore.  I no longer define myself by what I do or accomplish.  I am much less concerned about what people think of me, instead I focus on what’s important.   I have become gentler and more compassionate.  I accept, I forgive and I have learnt to let go of what I can’t control.  Most importantly, I have re-connected to my soul in a powerful way.  My relationship with my husband and children is joyful.  I have wonderful friends, a strong community and a very fulfilling life.  I feel complete.  This is the grace of God.

This monster called “cancer” is a reminder that life is fragile and so you must treat life as a gift from God.  It is a reminder that there is a last day for everyone – we just don’t know when it will happen.  How sad would it be to face that last day with regrets that you did not live your life fully and completely?

Today I feel strong.

I don’t think of myself as a person who has survived three cancers.

I don’t fear recurrence except when I go for my regular check-ups every three to four months to confirm that the cancers are contained and do not reappear.

I cannot stand to waste time.  I love to dance, to learn, to sing, to blog, to connect, to cook, to create, to visualize, to have fun, to give back, to make a difference.

And while I plan to live a long and fascinating life, I have come to terms with the fact that when it is my last day, I will succumb happily, with no regrets.   That has been the gift that cancer has given to me; the ability to live my life in service, in balance, in joy, in prayer and in doing my small part to make the world a better place.

-Munira.

Diana – My Cancer Sister

Jan 27, 2018

My heart feels numb today as I hear of the passing of my cancer sister, Diana Meredith.

Diana burst into my life some 3 years ago when she was diagnosed with Multiple Myeloma (she was subsequently diagnosed with breast cancer in 2017).  From the first moment we met, we became friends.  I would see her every two months at the myeloma support group meetings.  With her wide smile and even wider arms, she would envelope me in a bear hug.  As we underwent our journeys with cancer, we saw each other bald, with new grown itchy hair, sickly, struggling, fatigued, hale and hearty, depending on the stage of our journey.  We talked a little about death and mostly about living.  Diana was a feminist.  She had strong views about everything.  Between meetings, we connected through Facebook where she would share stories that were off the beaten park, stories that forced me to consider a different point of view. Diana was unapologetically her own person: unique, funny, curious, strong, vulnerable, loving, creative, compassionate, weird and wonderful.  I loved every aspect of her idiosyncratic personality.

We supported each other when things got tough.  Here is the note I wrote to Diana when she was first diagnosed with breast cancer:

“Dearest Diana – – I am so sorry to hear about your breast cancer diagnoses.  I actually can relate because this was my fate also.  Sometimes life can be quite overwhelming, can’t it?  I remember feeling quite angry at first and it took me a while to come to terms with yet another cancer.  I am sending you all my love and prayers for a complete recovery.  Please allow me to be part of your journey.  Anytime you need to talk, anytime you want to vent or have a coffee, I am there for you.

And I promise to be better about responding to emails promptly!  My friend, allow yourself to just be, whatever that looks like.  Take time for yourself.  Your spirit is strong and you will absolutely make it through this journey.  Let’s just pray that the myeloma behaves so you can focus on the treatment for the breast.  Everyday I keep you in my prayers.  I weep for you and I send you strength because you will prevail.  There is no doubt about that!  Treat this as a speedbump in the road of life.  One day, you and I will both look back and share a laugh over this……

In friendship and with love. Munira”

Here is the note she wrote to me when she found out that I had lost my vision for a few days due to extreme scratched corneas:

 “Munira,

I just read your blog posting about your eyes. I know you had told me about it, but reading it again just brought home for me how terrifying that must have been for you. It is so frightening to lose our senses. I’m so glad to hear that it all seems to be healing.  And now you’ve started this painful Estrogen positive drug. How dreadful that it causes you pain. I’m glad the Herceptin is going okay. What we go through, eh?  I started my Herceptin last Friday and the Taxol yesterday………..The Taxol side effects will probably start in a few weeks. Fortunately I have a complex knitting project to keep me busy during the infusion!

I tried to buy a [Munira] bra, but they were out of my size. I’ll try again….I’ll let you know when my breasts are wrapped in Munira’s resilience!

Love you dear Cancer Sister, Diana”

Diana was also an artist and roped me beautifully into helping her with a portrait series she was doing about people living with cancer.  Here is her note, which I cherish:

“Munira,
I wanted to write & tell you why I would like you to be one of the people in my portrait series about people living with cancer. It is all about your spirit and how you share it with so many people. Of course I don’t know you very well, but I have read your blog, been to your home, visited your Ismaili Center at the Aga Khan Museum and most of all, been present with you as you gave your deep love and support to people at the Myeloma Support Group, myself included. You have chosen to be a witness, a spokeswoman for those of us on this cancer journey. You speak your truth and in so doing, you reach into the hearts of many. Fortunately your truth is one that is full of love and beauty and that shines out in your spirit.

I would like to capture that spirit in my art. My unrealistic ways of picturing people may not be the kind of art you are used to. Sometimes an unrealistic image is able to portray a deeper truth of a person than a picture that looks like a photograph. It does that by using expressive brush marks & unusual colours that tell the story of who the person is in a different way. Being human has so many different layers to it.

Cancer is not a journey that any of us would choose, but here we are. This very moment I’m writing this to you from the day unit at Toronto General where I’m getting an iron infusion for my anemia. Nothing compared to what you are dealing with; nonetheless, I too struggle with my fears, changes & limitations. Your way of doing cancer helps me and so many find our way through.  I wanted you to know why I’ve asked you to do this.

Love, Diana Meredith”

Nagib and I visited Diana at her studio last summer where she unveiled the image she had spent many months creating.  She was right.  The image took a little bit of getting used to.  It fractured my face into four parts and was large, abstract, colourful, outrageous and unconventional.  It was classic Diana!

Life went on.  Diana and I would generally see each other every couple of months and each interaction was infused with laughter and good conversation.  We promised to spend more time together in the new year.  Over the Christmas holidays, I learnt sadly that Diana’s breast cancer has metastasized into her brain and she needed brain surgery.  Her spirit comes through as she describes the aftermath of the surgery:

“My recovery from the brain surgery on Dec 15 [2017] is going in leaps and bounds. I can read again – thank god. It is hard to imagine living without reading. So much of who I am is tied up in reading and writing. Immediately post surgery, I was very wobbly when I walked, initially using a walker. I’m not wobbly so much now and today I ventured out by myself on public transit. Most of all cognitive function is returning. There were some very odd sensations the first week home when I was challenged by sorting and sequencing. I couldn’t figure out where the different categories of garbage went – compost, recycle, trash. I’d stand in the middle of the kitchen and puzzle. Or I’d put all the breakfast makings on the counter and then stare at them – what do I pick up next? This was both curious and terrifying. I’m greatly relieved to be able to do these ordinary logistical sequences that I’ve always taken for granted. And I’ve returned to computers. My iPhone no longer looks like a foreign object.

It hasn’t even been three weeks since the surgery. I am amazed at the human body’s capacity to heal; I’m also deeply appreciative for a publicly funded medical system which did emergency brain surgery on me less than 48 hours after arriving at Emergency. Mostly though it is the love and supportive of my friends, family and community that keeps me going. And central to all that is Peter who has brought me tenderness, attentiveness, deep love and marvelous meals throughout. This isn’t the journey I would have chosen, but since I’m on it, I marvel at the hidden treasures it offers me.

Love, Diana”

On my birthday this week, Diana sent me a Facebook message that simply said, “Cake!”.  And two days later, on Saturday January 27, she died suddenly and unexpectedly.  Her husband Peter shared this heart-wrenching news with Diana’s friends.  In his words:

“Diana died today at 1 pm. It was sudden and unexpected: she had been feeling well all week, then yesterday her flu-cough returned, and she went to bed for a nap. Around four pm she said her back was hurting very badly and she was feeling nauseous. At 3 am we went into emergency at Toronto General, and she was admitted. The first doctor to examine her thought she had septicaemia, and warned us that it had a 50% mortality rate. We spent our last five hours together talking about  the wonderful things we had shared in our lives, the trips abroad, the canoeing, the dog… and so much love.

Her condition continued to worsen through the morning, and though the doctors gave her oxygen and antibiotics, they were unable to get her breathing on her own. Her lungs filled with blood, and they tried to pump it out, (she was sedated through that, mercifully) but she was unable to breathe, and at 1 pm, as I held her hand, the machines were turned off. The doctor said it was influenza, though they will do an autopsy to be sure. It doesn’t really matter.

So many horrible ironies: yesterday morning we met with her oncologist, who had sketched out a more hopeful future than we had thought. We were talking about a trip to Italy this summer. After her brave and heroic battle with cancer, it was influenza that killed her.

Diana Meredith transformed my life in so many deep and wonderful ways. We had 21 years together, deepening and sharing our most essential selves. Many of you came into my life through Diana, and she taught so much about myself, about the world, and about making one’s life a creative act. 

I will miss her more than words can tell.

Peter Marmorek”

Diana, my Cancer Sister – – I pray that your transition into the next realm of your journey bring you peace and tranquility.  I will remember you every day and will look forward to reconnecting with you on the other side where I fully expect you to be engaged and joyful in new adventures.  With sadness and a heavy heart, I bid you goodbye my dearest Cancer Sister.

https://cancerportfolio.wordpress.com/

What comes out of you when you are squeezed?

Every once in a while you hear something that resonates for you in a deep way.  That happened for me when I heard Wayne Dyer talk about the orange.  It’s a story he loved to tell his audiences.  He would hold up an orange and ask, “If I were to squeeze this orange as hard as I could, what would come out?”

Generally people would look around unclear about what to say.  Then someone would shout, “Orange juice!” and everyone would laugh.  Then he would ask, “Why? Why, when you squeeze an orange, does orange juice come out?” After a pause, he’d say, “Because that’s what’s been inside all along.”

It’s the same when you squeeze a tube of toothpaste; you get toothpaste.  Or when you squeeze a bottle of ketchup; it squirts ketchup.  When you squeeze a bottle of shampoo, you will not get body lotion because that’s not what’s in it.

When life “squeezes” you, or someone puts pressure on you, what emotions and behaviours will come out?  Will it be anger, fear, hate, pain, judgment, resentment, negativity?  It does not matter where the pressure comes from: it could be a family member, a boss, a friend, a customer, your work, an illness, a job loss.  When life deals you a setback or people say something you don’t like, or if they offend you, the emotions that will erupt out of you is what is building inside of you all along.

I have experienced this more times than I care to admit.  I find that when I have a lot on my plate or trying to meet impossible deadlines, I can become impatient with my family and be quite difficult to live with.   When someone annoys me, I can get quite cranky and judgemental.  It is what is inside that explodes out.  A huge part of this is taking accountability for all my emotions and actions.  I no longer say, “she makes me so mad” because I can’t justify my actions by blaming someone else.  I also proactively think about what sets me off so that I can better manage my emotions.

Since my illness, I have become conscious of what I put inside of me.  I accept that life can be challenging and pressures can creep up.  At the first glimpse of trouble, I reframe the situation and find a way to restore and rejuvenate so that when I am squeezed, I am at the very least, centred.

I love to spend time with my mom and watch her as she goes about her business.  When she is squeezed, what comes out of her is pure love.  She does not have the capacity to harbour any negative emotions.  Her gift is in her ability to always find compassion and understanding no matter what the situation.  She makes me realize that what’s inside of us is our choice.  If you choose to have joy and peace within, it will find a way to show up, no matter what comes from the outside world into your life.

So what would come out of you today if you were squeezed?  More importantly, what would you like to come out of you when you are squeezed?

Manage your energy, not your time

…the pressure we put on ourselves by chasing time, by multitasking and working crazy hours may help us achieve our short-term goals, but it is not sustainable in the long-term.

IMG_0471

When I was working full-time as an HR practitioner, I often caught myself saying things like:

I’ve got to put in an all-nighter, or
I’ll take time off after I finish this project, or 
After next week, I will be able to breathe again.

If you’re anything like me, you’ve probably uttered the same words as you worked on a project or were trying to complete a task. You just hunkered down and worked harder.

Now that I look back, I realize that the pressure we put on ourselves by chasing time, by multitasking and working crazy hours may help us achieve our short-term goals, but it is not sustainable in the long-term. And if we continue down this seductive path, we may end up over-worked, frustrated in constantly chasing deadlines, and, God forbid, sick.

When I was diagnosed with one cancer, then another, and then a third cancer, I had to re-examine my relationship with time. No longer was I able to function on 5 hours of sleep (which I saw as a badge of honour). No longer did I have the energy to take on multiple projects and manage them all successfully through completion. No longer could I work tirelessly for weeks and then expect to function normally. At the height of my illnesses, I struggled with basic stuff like climbing up a single set of stairs or even getting out of bed. I had trouble with opening a bottle of jam when neuropathy struck my fingertips. Chemotherapy caused me to forget names, directions and instructions. From this place of immense loss, I was forced to figure out how to live productively and do more with less.

The secret antidote I found is not to manage time, which is a finite resource, but to leverage our energy, which is renewable. I stumbled upon this when I came across work done by Tony Schwartz and Jim Loehr, authors of the Power of Full Engagement:

The number of hours in a day is fixed, but the quantity and quality of energy available to us is not.

They identify four dimensions of energy that we need to focus on for full engagement and high performance: physical, emotional, mental and spiritual energy.

Physical energy is about being mindful of our nutrition, getting enough sleep, and exercising. This was hard for me because my body was constantly fatigued. But I persevered with small changes like taking deep breaths and stretching a few times a day, then over time starting the day with a healthy breakfast, drinking more water throughout the day, slowly introducing weekly workouts and taking a 15 – 20 minute nap when I needed it. The other aspect of physical energy that the authors recommend is to do what elite athletes do to maximize their performance. It is about interval training: working in focused 90-minute chunks followed by recovery and rest. Their research shows that after 90 – 120-minute cycles, our body moves from a high-energy state to a state where we can no longer concentrate and it craves recovery (think yawning, hunger, lack of creativity, restlessness). Taking the time to go for a walk or doing something you enjoy for 20 minutes allows you to recover and rest. I am doing this with astounding results and finding that when my brain has a chance to rest and I totally unplug, I can get back to working with recharged batteries.

Emotional energy is about keeping a positive outlook in the face of challenges, obstacles and stressful situations. Negative emotions are draining and costly. My way of restoring emotional energy is to sit in a place of gratitude, connect with people and reframe situations to find the good within. I have had a lot of practice to do this over the past 5 years when my body, mind and spirit were so challenged. Now when I find myself down or stressed, I try and break out of that cycle quickly so I can focus on living life joyfully.

Mental energy is what we use to organize our lives and focus our attention. It is about challenging our brain and constantly learning. It is about feeding our mind a daily dose of good stuff and keeping distractions at bay. Having experienced “chemo brain”, I know what its like to be at the mercy of a non-functioning mind. Now I am super conscious about what I feed my mind. I am hooked on Stitcher (thanks to Shayne) and listen to one podcast a day on a topic of interest. I have become a voracious reader of non-fiction books. I spend dedicated time connecting and collaborating with like-minded individuals on projects. I push myself beyond my comfort zone. This has improved my ability to think rationally, make decisions and focus. I still need to limit the amount of time I spend on social media which can be a huge distraction, especially in these highly charged political times. And I am trying to cultivate a habit where I check emails at designated times rather than every few minutes.

Spiritual energy is fueled by our sense of meaning and purpose, it is the “why” we do what we do. It is about understanding who we are and where we are going. It is the life force that binds us to our soul. It is our personal way to connect to something beyond the physical world. I practice spiritual energy by living by the tenets of my faith. Sometimes I falter and fail, and then pick myself up and try again. Several times a day, when I have a moment to myself, I take out my Tasbih and pray – sometimes, only for a few seconds. When I am spiritually charged, my soul is happy.

Incredibly, it took cancer to help me appreciate how to live life fully by managing my energy. When we are physically active, mentally agile, emotionally stable and spiritually charged, we can balance the different aspects of our lives with ease. When we alternate between hard work and play, we give our body and mind the fuel to work better. Today I feel awesome most of the time by following rituals to manage my physical, emotional, mental and spiritual energy on a daily basis. So the next time you feel tired, drained, stressed, or even lethargic, bored or stagnant, focus on managing your energy.

5 years later…

…and we are finally going on that long-awaited Mediterranean Cruise next week!

Happy 35th Wedding Anniversary, My Love, and…

Thank you, Shayne, for making it all possible!