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?

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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).

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!

 

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.

Dear Tom

Dear Tom, I just learnt that you’ve been diagnosed with Multiple Myeloma. I am sorry to hear this news and felt compelled to write to you. You see, I, too, was diagnosed with Multiple Myeloma…

Tom BrokawDear Tom,

I just learnt that you’ve been diagnosed with Multiple Myeloma. 

http://www.cnn.com/2014/02/11/showbiz/tom-brokaw-cancer/

http://www.cnn.com/video/data/2.0/video/showbiz/2014/02/12/ac-gupta-tom-brokaw-cancer-announcement.cnn.html

I am sorry to hear this news and felt compelled to write to you.  You see, I, too, was diagnosed with Multiple Myeloma.  I remember the exact moment:  It was Feb 3rd, 2012, at 4:08 pm.  My husband, Nagib, and I were at Toronto General Hospital.  We figured that the doctor would say I had anemia, prescribe iron pills and send me home.  Instead, Dr. Robert Wu sadly informed us that I had Stage 3 Multiple Myeloma.  We had no idea what Myeloma was and frantically started searching the internet for details.  Nagib and I tried to make sense of the information.  The news was frightening.  In that moment, our lives changed forever.  But things were going to get much worse.  Two weeks later, I got a call from the hospital to go for additional tests.  And that is when I learnt that I also had an aggressive-moving Stage 4 Non Hodgkin Lymphoma.  I thought I had two weeks to live.

It’s been two years since the diagnoses and here I am – still very much alive, living fully.  Living fearlessly!.

I am writing to tell you that Myeloma is not fun.  It is a pesky, non-curable cancer.  It can cause bone disease and complications in the liver and kidneys.  The treatment can often result in high fever, fatigue and exhaustion, bruising and bleeding, and repeated infections.  But you knew that already.

Multiple myeloma is a cancer of the plasma cells in the bone marrow.  It is a relatively rare form of blood cancer.  Approximately 24,000 people in the US are diagnosed with Myeloma each year, while 11,000 die from Myeloma each year.  The five-year survival rate is approximately 38%, one of the lowest of all cancers.  (In Canada, approximately 7,000 people are living with Multiple Myeloma, with approximately 2,300 new cases diagnosed each year, and approximately 1,400 deaths each year).  At this time, the exact cause of myeloma is not known.  What is known is that myeloma is slightly more common in men than women, generally occurs in adults over 50, and the incidence is twice as high in African Americans as it is in Caucasians.  But you knew that already.

Today, there is much to be hopeful for if you belong to the Multiple Myeloma community.  New drugs.  New treatment options.  Stem Cell transplant.  All designed to slow disease progression and provide prolonged remission.  You will be the beneficiary of this advanced research.  But you knew that already.

What I want you to know is that you will make it through this difficult time.  Yes, there will be days when things may seem bleak and dismal.  Treatment, and the side-effects from the treatment, are difficult at the best of times.  Just know that these are small inconveniences, a speed bump in the road of life.

Tom, you are strong.  You are resilient.  You are courageous.   And you have wonderful caregivers in your life.  You will find a way to embrace this challenge and learn from it.  You will make meaning of this, and use your gift of voice and words to raise awareness of the disease.  You will find a new purpose in life.  Life will be even more precious for you as you live every precious moment of it.  But you knew that already.

I am counting on you, Tom, to be around for many, many more years.  You have touched many lives and have reported the news with competence, integrity and grace over the years.  I have been a fan of yours for as long as I can remember.  So I urge you that, while you continue your work, take some time to look after yourself.  And ask for help.  And, this is something you probably didn’t know:  we are all praying for you and rooting for you!

Sincerely,
Munira

Toronto, Canada
February 11, 2014