It’s Been a Month of Ups and Downs….

This month I had a real scare. Everything was hazy and I couldn’t see anything in the distance.

 

2016-10-28-023This month I had a real scare.  I was at a client site doing some work and then met Nagib for lunch.  As we were having lunch, I realized that I had trouble seeing.  Everything was hazy and I couldn’t see anything in the distance. I figured that I had been working late hours and my eyes were probably just a bit tired.  A couple of days later, I went to a seminar and was shocked to find that I couldn’t read the Powerpoint slides.  I actually wondered for a moment if I was going blind.  The very next day I went to see my friend and optometrist, Dr. Areef Nurani.  After a thorough examination, he told me that I had totally scratched my cornea.

The good news is that this was something that could be fixed except it would take some time.  My eyes felt like someone was rubbing them with steel wool; the pain was unbearable.  And my vision was seriously compromised so driving became problematic.  When I called Sabrina to tell her, she reminded me that the elephant that she had adopted with Afzal some 5 years ago, Kainuk, had also injured her cornea when she accidentally struck her eye with a tree branch.  She wondered if I had done the same thing!  And then, she had the nerve to suggest that perhaps I should put some socks on my hands to prevent me from scratching my eyes.  No sympathy there!  My scratched cornea then turned into a full infection which needed to be treated with antibiotic drops.  Once treated, I needed anti-inflammatory drops to heal my eyes.  This went on for a couple of weeks, and my sight has now almost returned to normal.  My optometrist’s view is that the infection occurred because my immune system is severely compromised.

This month, I also started on a breast cancer medication, Letrozole, as I am estrogen-positive.  My oncologist, Dr. Robson, said that it is important for me to be on this pill for 5 years to prevent a recurrence of the cancer. The problem is that I hate don’t love this pill – it’s causing me bone pain.  And, fatigue is a huge problem (probably due to my low hemoglobin count). I run out of spoons easily before the end of the day.   Opting out of this pill is not an option so I have to find a way to give it a chance and to embrace it.  I am working on this.

I continue to go to the hospital every 3 weeks to get an IV infusion of Herceptin.  This will continue until March of 2017.  In addition, I am booked for an echocardiogram every 3 months to make sure that my heart is functioning well, as heart muscle damage is a potential side effect of Herceptin.  It’s all connected.  The good news is that the Herceptin infusion is going well and the echocardiograms show that my heart is just fine.

One piece of really good news is that my multiple myeloma is behaving very well.  I had an appointment recently with Dr. Tiedeman, my superhero oncologist for Lymphoma and Myeloma at the Princess Margaret Cancer Centre.  He said that my myeloma numbers were “too little to be seen”.  It is these small miracles that make life so precious.  Oh, and my hair is growing back, and I’m having fun with it (like having my hairstylist Afsaan do speed lines).

So, it’s been a month of doctors and hospitals, of ups and downs.  I have continued to work through this time and have tried to maintain a positive frame of mind.  And in spite of the challenges of this past month, if I were to rate my life on a scale of 1 to 10 (with 10 being the best), I would, without a doubt, rate it a 10!  I think this is because I have so much to look forward to:  Sabrina, Shayne, Afzal and Fareen are coming home in December, and my heart is so full with anticipation.  Nagib and I took off to Niagara Falls for a couple of days this week to celebrate 36 years of “going steady” (we started dating on November 20th at 3.20 pm at Founders College at York University).

I am engaged on a couple of projects that I am loving.  One of this is the “Munira Bra”.  If you haven’t already bought a Munira Bra, please consider buying one.  It is a great bra, and 50% of the proceeds go to North York General Hospital (NYGH), which is looking to raise $100,000 for a biopsy table for breast cancer patients.  To order the bra, please go to knixwear.ca.  The bras will also be sold at NYGH, in the lobby, by the gift store, on December 6th, from 10 am to 4 pm.

So, all in all, Life’s Good.  There is something hopeful and magical, and certain, about the sun rising every morning.  I look forward to each day with such joy as it is a chance to reset life, choose your path, move forward and embrace life with your whole being.  I can’t wait for the sun to rise tomorrow again and discover more gifts from the universe.  Life is Good Great!

 

The Munira Bra!

I have heard of people who have streets named after them.  People who have hospitals, libraries and and schools with their names displayed prominently.  Last month, I learnt that President Obama has the dubious honour of having a parasite named after him, Baracktrema obamai, by a scientist who wanted to honour him.  Well now, I have a bra named after me – The Munira Bra!

It all started a couple of months ago when my surgeon at North York General Hospital (NYGH), Dr. Pinchuk, called me and asked if I would be interested in participating in a campaign with Knix Wear to benefit the hospital. Knix Wear is an active intimates company that creates beautiful products for women based on extensive customer research.  The Evolution Bra, their most popular product, was created with the guiding principles of “comfortable can be cute” and “functional can be fashionable”.   The Evolution Bra is anti-odor, quick dry, fully reversible, has a seamless design and is completely underwire free.  It is available in all sizes, from extra-small to 2X.  Best of all, the fabric completely moulds to your unique shape.  The bras are designed so you can wear them at work, play and during workouts.  Knix Wear has been featured in a number of magazines, including The Huffington Post, Forbes, Glamour and Cosmopolitan, each of these touting the Evolution Bra as the world’s most comfortable, versatile and technologically advanced bra.

The company was started by Joanna Griffiths, CEO and Founder, in 2015 and has 7 employees.  She is beautiful and smart and… young!  She graduated from Queen’s University only a few years before my son, Shayne.  She then went on to do her MBA at INSEAD in France.

She had a business idea that she pitched to Dragon’s Den and obtained a $300,000 investment from one of the Dragons in exchange for 20% of her company.  She funded the development of the Evolution Bra through crowdfunding (Indiegogo and Kickstarter) and raised an impressive $1,551,287 from more than 19,000 backers.

The NYGH approached Knix Wear to design bras that would benefit patients who are going through breast cancer treatment.  As a breast cancer patient, I love the idea!  I found that there were times during my treatment when it was difficult, if not impossible, for me to wear a bra. This was after the lumpectomy (surgery) and during and shortly after radiation treatment.  The Evolution Bra would have been completely wearable at that time.

The NYGH/Knix Wear campaign features 5 women who have undergone breast cancer treatment at NYGH.  Each of us was asked to share a word that describes our journey with cancer. My word was “Resilience”.  My colleagues,  Judith, Anita, Anne and Lindsay picked, “Strength”, “Victory”, “Transform” and “Heart”.  The words are tastefully displayed on the limited edition Evolution Bras.  Knix Wear interviewed and videotaped each of us and invited us to a special media launch event at the Yorkdale Shopping Centre, where they revealed the special edition Evolution Bra.  Five Women. Five Words. Five Bras.

The Bra retails for $60 each, with $30 from each sale going directly to NYGH.  The goal for NYGH is to raise $100,000 to buy a new Biopsy table for the Breast Diagnostic Centre that will directly benefit patients.

These beautiful Bras will be on sale at NYGH on Monday, October 17, 2016, from 10 am -4 pm in the Atrium of the main South entrance of the Hospital.  They are also available at Yorkdale Mall at the pop-up Brika store until the end of October.  Alternatively, you can purchase them online at www.knixwear.ca.

October is Breast Cancer Awareness Month.  The numbers are daunting.  1 in 8 women will be diagnosed with breast cancer during their lifetime.  This campaign is a wonderful partnership between NYGH and Knix Wear to come one step closer to finding a cure. Women everywhere – – I know you need Bras! Please purchase a Munira Bra today!

Click here for an article in the local North York Mirror.

 

 

 

 

Daniel, My Brother

October 5, 2016 – Toronto.  I first met Daniel and his partner, David, about a year and a half ago.  It was at the Toronto & District Multiple Myeloma Support Group meeting.  Daniel had been diagnosed with Multiple Myeloma, and he was looking for information on the tandem stem-cell transplant that he was about to go through.  And from that first meeting, we became friends.  At every subsequent Support Group meeting, I would wait expectantly for Daniel and David to walk in the door, knowing that I would be treated with enormous bear hugs, huge smiles and joyful conversations.  We talked about cancer, yes, but cancer did not define our relationship.

Today, Daniel is no more.  He lost his fight with cancer yesterday and the world is a dimmer place today.  I am so saddened by this loss; it is almost as if I lost a brother.  What makes this even more difficult to accept is that Nagib and I visited with David and Daniel at their beautiful place in downtown Toronto less than two weeks ago.  Daniel had just been released from St. Michael’s Hospital where he was being treated for a serious infection (listeria) that he caught in Germany a couple of months ago. Unfortunately, he also had a relapse of the myeloma in late June and his doctors were anxious to start him on chemotherapy again.   When Nagib and I saw Daniel, he was weak, but his spirit was strong and his smile lit up the room.  We made so many plans as we sat around the dining room table sipping tea – including taking a tour of the Aga Khan Museum and Ismaili Centre, and having lunch at the Diwan restaurant.  And just like that, Daniel is no more.  Further tests last week revealed that the cancer in his bone marrow had invaded his bloodstream (this is known as Plasma Cell Leukemia) and his liver, and that he would have a scant 72 hours to live.  I sat in prayer all night.  I prayed that God look after Daniel, keep him safe and envelope him in His love and protection.  I prayed equally hard for God to give David the strength and courage during this devastating time.

Over the year, I witnessed the incredible love that Daniel and David shared.  I saw how they could finish each others’ sentences and know what the other was thinking.  I loved how different they were – David, expressive, social, funny and outgoing; Daniel quieter, thoughtful, reflective and gracious — and yet how they fit together just right.  I learnt that their story began some 14 years ago when David was living and working in New Jersey and Daniel was working on Wall Street in New York.  They met at a party in New York and the rest in history.  They have been together ever since, even deciding to move to Toronto when Daniel was transferred here.

Heartbroken.  Intense pain.  A gaping loss.   It is written all over David’s face.  And yet, he is strong enough to let Daniel go, knowing that Daniel is not in pain any more.   When I woke up this morning, I had a sense of peace and calm that when Daniel crossed over, the doors of heaven opened for him and God was there to receive him in His warm embrace and to grant him the grace of eternal light and peace. I also know that Daniel will continue to be with David – and all of us who loved him – through shared memories, the gentle autumn rain, a butterfly that floats by, stories, events and celebration.  I will never forget how Daniel happily carried a sign I gave him at Princess Margaret Cancer Foundation’s MM5K Walk in 2015.  He had lost all his hair from cancer treatment and the sign was almost custom-made for him!

The fragility of life.  The loss of loved ones.  The sadness and pain.  The havoc that cancer can sometimes cause.  All these things are very real for me as I come to terms with Daniel’s loss.  I also know that if Daniel were here, he would remind me of the gift of friendship and love, of making each moment count, of holding on to faith and hope, of being a good person and of living life fully.  This is the legacy that Daniel left behind – and that David embraces – that I will hold on to.

– Munira


Postscript:

When we had tea with Daniel and David two weeks ago, we learnt that Daniel was living and working in the area south of Canal Street in New York, that was severely impacted by the terrorist attacks on September 11th, 2001.  It took nearly 10 years for the multiple myeloma to surface in Daniel.  He is among thousands of responders and survivors who were directly impacted by the toxic and hazardous air following the attacks.

More than 15 years later, there are more than 75,000 patients enrolled in the World Trade Centre Health Program; nearly 23,000 of them are specifically getting treatment for conditions such as multiple myeloma, among others.  Daniel was one of them. Fifteen years after 9/11, the death toll continues to mount.

Curveballs and Blessings

DSC_0151
Doing my best “Mother-in-law” impression.

In all the excitement of Sabrina’s wedding, I’ve not had the time (or inclination) to pay any attention to my cancer situation.  It has been an interesting few months.  A time of highs and lows, of ups and downs, of peaks and valleys.  The surgery and chemotherapy were hard on my body, but I have persevered by looking forward.  I choose life!

Tuesday, July 5th was a date that we had circled on our calendars.  It was scheduled to be the date of my sixth and final chemo for breast cancer.  I was beyond excited to celebrate this milestone, and to return to living life with as much normalcy as possible.  Unfortunately, my hemoglobin and platelet counts were too low for me to tolerate chemo.  Dr. Robson wrote up orders for me to have a blood transfusion instead — to boost up my counts — and asked me to return to the hospital for chemo on Friday, July 8th. Alas, it was not to be.  Despite two units of blood, my counts were still pretty low and the doctor decided to cancel the final chemo.  His rationale was that my body was taking longer and longer to recover after each chemo, and he couldn’t, in good faith, put my body through yet another gruelling chemo.  I had mixed feelings about this.  On the one hand, I felt cheated because I did not complete the full treatment; it felt like unfinished business. On the other hand, I felt a sense of relief that I wouldn’t have to go through the horrible side-effects.  It took me a couple of days to re-adjust my thinking and accept that I was not meant to have that final chemo and that was okay.

Around that time, my trusted PICC line got dislodged and the surrounding area on my arm got infected.  The PICC line was used to administer the chemo and the plan was to use it for the herceptin infusions I need to get, every 3 weeks, until March 2017.  I shed a few tears and then reframed the situation.  Not having the PICC line meant that I could start working out again and so I promptly rejoined Goodlife Fitness!

Three weeks ago, on August 8th, after enjoying all the wedding festivities, I started radiation treatments at the Odette Cancer Centre at Sunnybrook Hospital.  The plan is for daily treatments to take place 5 days a week (with weekends off), for a total of 25 treatments over 5 weeks. This is the first time in my cancer history that I am undergoing radiation and it is quite an experience.  The first planning session was long and I had to lie very still while the technicians determined where exactly they would radiate.  There was a lot of math and numbers and calculations as the technicians moved me, first this way, than another, to make sure that they had the coordinates just right.

2016-08-29 Sunnybrook
Daily radiation therapy at Sunnybrook Hospital

The difference between chemotherapy and radiation is like night and day. Chemotherapy is not very intelligent.  While it destroys cancer cells, it also harms perfectly healthy fast moving cells because it just does not know the difference.  Radiation, on the other hand, is about exactness and targeting only the specific areas where cancerous cells were seen (in my right breast and lymph nodes under my arm).  I am now more than half-way through my radiation treatments and I have not noticed any side-effects.  I have heard from patients that the side-effects will come later and I will experience skin irritation, burning, itching, soreness and fatigue.  I have been prescribed a cream to apply to the area a few times a day and I am doing this diligently.

Overall, I am feeling pretty awesome!  Yet again I see the benefit of focusing on all that is great in my life – family, love, celebration.  Cancer does not stand a chance!

DSC_5889
Wedding Day – July 31, 2016:  Nagib, Munira, Sabrina and Shayne.

 

 

Emergency Kit

I was there when Sabrina first asked Shayne to be her “Man of Honour” for her wedding. After laughing out loud, he realized – as we all did – that she was actually quite serious and that this was a non-negotiable for her. We also knew that this was highly non-traditional. Using all her powers of persuasion (and probably a lot of her skills from her Negotiation class at Columbia!), Sabrina told Shayne that this was a milestone event in her life and she wanted to celebrate it with her big brother & hero by her side.

It took a couple of weeks for Shayne to warm up to the idea.  Once he did, he played the part like a true sport!  When Sabrina told him that it was customary for the Man of Honour to have a manicure and pedicure, Shayne looked a bit dubious and asked me if this was true.  With a straight face, I told him that it was indeed a key responsibility that he accompany the bride to the nail salon and participate in this ritual.  It was a memorable, happy afternoon as we watched Shayne go through his very first mani-pedi experience.  At one point, the nail technician brought something that resembled a cheese grater to work on Shayne’s feet.

 

OLYMPUS DIGITAL CAMERA
Man of Honour, Shayne, gets his nails done for the first time.

We are all taking bets on whether mani-pedi’s are going to be a regular part of Shayne’s beauty regimen – don’t be fooled by his tough exterior. We think he secretly enjoy it!

OLYMPUS DIGITAL CAMERA
Pre-Wedding Mani & Pedi

 

For the wedding day, I loved how Shayne prepared an emergency kit to manage any eventuality.  It consisted of bandaids, bobby pins, safety pins, a mirror, protein bars, bottled water, lip gloss, deodorant, q-tips, kleenex, eye drops, Advil, mints, make up kit, and a small amount of cash. I heard that many of these items came in handy that day.

This got me thinking.  If I had an emergency kit today, what would it consist of?  If I could have only one item in my kit, it would be a fully charged iPhone with WiFi access. From connecting to people and listening to music to navigating traffic and managing bank transactions, my iPhone has become my life. And when I need answers to questions, there is always Siri. It is a bit crazy – and scary – how one device can be so all-encompassing.

Other than my iPhone, there isn’t much, in the way of possession, that I need on a daily basis. I love my electric toothbrush and am partial to lip glosses and eye liners.  I take a heavy dose of vitamins every day.  I love my Magic Bullet and my green shakes to start the day (I am constantly stocking up on spinach, almond milk and bananas!).  There is a pair of shoes I love and I practically live in my Rockstar Jeans from Old Navy. I don’t leave home without applying Angel perfume. And I can never say no to a Whole Nut Cadbury chocolate bar.  Oh yes, I now need glasses to read.  So I might include these items in my Emergency Kit.

But the more I think about it, I have come to the conclusion that I would not fill my Emergency Kit with possessions, rather I would fill it with qualities.  At the bottom of the kit, I would have passion and purpose just as a reminder of how important these are to living  a fulfilling life.  I would definitely include courage and resilience to the kit because I realize, on a daily basis, how important it is to continue to flex my resilience muscles when life throws curveballs, as it invariably does from time to time.  At the top of my kit I would have patience and compassion because this is something I struggle with and need to work on consciously and continuously.  I find that I am always in such a hurry to get things done, that I don’t always see the impact of my actions on others.  I would line my Emergency Kit with hopefaith and community as a reminder of what is needed to go through life whole.

I imagine every person’s Emergency Kit would have different items.  Out of curiosity, what would your kit consist of?