Happy Valentines Day 2018

Squeeze you so tight and never let you go!

It was on February 14, five years ago today, that my doctors gave me melphalan, a high-dose chemotherapy drug to kill the remaining myeloma cells in my bone marrow.  In layman terms, this chemo was like a “CTRL-ALT-DEL” function on the computer.  It rebooted the system and killed all cells – good and bad.

The next day, February 15, 2013, I received a stem cell transplant and my system was upgraded to Version 2.0.  I have so many memories of the next three weeks I was in hospital post-transplant:

My neighbour was this beautiful woman from England who moved to Canada many years ago for love.  I used to watch mesmerized as every day she would put full make up on her porcelain skin; first the foundation, then a heavy dose of mascara, lipstick.  This would take her about 30 minutes. Following that she would put on a stylish covering on her head.  We introduced our families to each other and promised to always stay in touch.  Sadly we did not keep in touch and I often wonder how she’s doing.

The second week of the transplant was the worst, when all blood levels go to zero and you are kept alive by transfusions and medicines.  There were a couple of days when I just sat in the corner of the room.  Literally.  It was my way, I think, of expressing that I wanted to be alone and disengaged from the world.  Then there were happier days in week three when I befriended my IV pole and used it as my dancing partner.  Another time I got other patients to bring their poles and dance with me to the hokey pokey.

You put your right foot in,
You put your right foot out…
…and you shake it all about.

That was fun!

Another memory I have during Week 3 (as my blood levels were rising and I was feeling stronger) was when I wanted to watch a movie and had to convince Dr. Franke to allow me to leave the hospital for a few hours.  I threatened to break out if he would not let me go.  With a smile, he said I could go provided I was back by a designated time.  Nagib and Shayne took me to Les Miserables, where I clapped periodically during the movie to their utter embarrassment.  We stopped to have dinner at a Chinese restaurant where I was able to take a few bites of food.

Five years later, here I am living happily with my new stem cells.  At some point, the stem cells will choose to misbehave and I will need another transplant.  It is inevitable.  But right now everything is in alignment and pretty awesome!

I remember these moments, especially on Valentines Day every year.  On that particular Valentines Day in 2013, at the Princess Margaret Cancer Centre, Nagib brought me flowers with a flourish.  They could not be real flowers because of hospital policy and Nagib had to repeatedly convince the nurses who entered the room that the flowers were indeed, fake.  We spent Valentines Day in the hospital, holding hands.   Each year we continue to celebrate Valentines Day and say thanks for the advancement of science and the miracle of life.

Today, I taught a course at a client’s office on “Conflict Management”.  Oh what irony on this day of love.  Then I met Nagib at his office and we shared chocolated covered strawberries and a decaf Americano.

And I whisper a quiet thank you to the universe for bringing Nagib into my world because he is my home, my adventure, my love, my friend, my teacher, my privilege, my heart, my connection, my prayer.

Happy Valentines Day, my love!

 

 

 

 

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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”.

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/

The Journey Beyond Cancer

April 24, 2017 – After 8 pokes to search for a working vein, nurses at North York General Hospital infused Munira with her final Herceptin treatment, successfully closing the chapter on her battle against breast cancer.

Munira always says:  “Put it out to the Universe, and let it work its magic”. The Universe has come through again.

Dr. Robson confirmed that Munira’s latest mammogram results were negative.  Dr. Tiedemann confirmed that all bloodwork for her multiple myeloma (m-proteins, free light chains, etc.) are within the normal range. And her Non-Hodgkin lymphoma has been out of sight and out of mind for the past few years.

So on this, the 25th day of April, 2017, I’m putting it out to the Universe:

The Journey Through Cancer is over.  Now, the Journey Beyond Cancer begins.

Thank you to everyone for your support and prayers over the last 5+ years, and especially since December 2015, when Munira was diagnosed with breast cancer.

I’m writing this post because Munira is way too busy living her life beyond cancer.  Every day, she finds a way to make an impact on those around her – whether it’s providing support to others afflicted with cancer, or raising funds for cancer research at the Princess Margaret, or lending her name to the Munira Bra (to raise funds for North York General Hospital’s BMO Breast Cancer Centre), or volunteering for a major community project, or bursting into a room with her energy and exuding happiness and warmth, and … (I can’t keep up with her!)

So, thank you, and God bless everyone.

The Journey Beyond Cancer begins…

-Nagib

 

Mount Kilimanjaro: Between Heaven and Earth

January 4, 2017.

My life has been intrinsically connected to Mount Kilimanjaro.  I was born in Moshi, the landmark of Kilimanjaro, and every morning, as a child, I would jump out of bed, run to the window and see “my mountain”.  It was a ritual I continued until I left Moshi for Canada.  The mountain was my anchor and my certainty.  When I visited Moshi two years ago, the mountain had “disappeared”.  I could only see a faint impression of it; something to do with global warming.  It was a difficult reality to face as an adult.

Kilimanjaro is the highest mountain in Africa at 19,341 feet.  About 30,000 people climb the mountain each year and about three-quarters of those reach the summit.  This past week, my son Shayne, his girlfriend Fareen, the impressive Mohamud Zaver (Fareen’s dad), Shaila (Fareen’s sister) and Shaila’s friend, Aleeza, took the 6 day trek to climb Mount Kilimanjaro. For six days, we have been holding our breath, waiting expectantly to hear from this group of brave warriors.  This morning Shayne called us to say that they all made the summit successfully and reached base safely.  Over the next few days and weeks, I am sure we will hear about the adventures, the joys, the mishaps, the challenges, the exhaustion and the exhilaration that the group experienced.  Right now, their immediate focus is a shower and many hours of sleep!

2017-01-03-027As I think about their experience, I am mesmerized by the metaphor of climbing a mountain.  Of doing something that is so out of your comfort zone; something that gets your adrenalin moving and your heart pumping. Something that gets you out of your head and fully into your body; where there is equal risk of failure or success.   Of taking that first step and creating the momentum to see the top of anything, rather than staying at the bottom of your life.  Of figuring out your true capacity by doing the seemingly impossible.  Of trusting that you will make it to the peak, that forward momentum will  get you there and that all you need to do is to put your head down and move forward.  Of knowing that it’s not all straight up – sometimes, you have to go down to go up – and you may miss a trail or path, and that’s okay.  For making that final push, when you are tired and scared and don’t think you can do it anymore.  Of doing something so expansive, so magnificent, that it changes you forever.

We are not meant to be ordinary.  We are meant to be extraordinary.  And in being extraordinary, if we can touch the lives of others and share experiences, be in the moment and enjoy the process along the way, and not judge ourselves by others, what gifts might that open up for us?  I love this excerpted quote in Eric Walters book, Between Heaven and Earth.  In this story, one of the characters, DJ, is given a quest to take his grandfather’s ashes to the top of Mount Kilimanjaro. It is a great metaphor for life:

“There is a saying – if you wish to travel fast, travel alone. If you wish to travel far, travel together. You are part of a group of climbers, supported by partners and led by a guide. Travel with them. That’s important for the climb and in the life. As you trek up the mountain, I want you to stop along the way, enjoy each step, each moment. Breathe in the air, savor the view, live in the moment. Move slowly, enjoy. Remember not to wish away the minute of the days between now and the goal you are seeking. When you look up, you’ll see climbers further along the journey. When you look back you’ll see those behind you. Don’t pity those below or envy those above. Life is a journey and not a destination; each must take it at his own pace.”

What is the one thing you will do in 2017 to be extraordinary?  To break out of  your comfort zone?  To broaden your perspective?  To embrace challenges?  To test your boundaries?  Each one of us is at a different pace. Is it learning a new language?  Is it taking a sabbatical?  Is it moving to Spain for 2 months and embracing a new culture?  Is it simply getting out of bed earlier?  Is it committing to working out 3 times a week?  Is it loving more?

I’m sitting with this for now as I applaud Shayne, Fareen, Mohamud, Shaila and Aleeza for the journey they took together and how this is inspiring me to find my own mountain.

– Munira

 

 

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