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).

A Humbling Experience!

2016-12-21-020I am a Type A personality – competitive, an overachiever, ambitious, impatient.  Anything that slows me down or keeps me from getting things done irks me.  Waiting in long lines, rambling meetings with no purpose, cumbersome processes —  these are things that drive me nuts.  Over the past few years, as I have grappled with first one, then two and now three cancers, I have noticed a significant shift in my personality.  I have been forced by the universe to learn to be more patient, more Zen-like, more relaxed, more accepting.

I notice this particularly in my work-out regimen.  Each time I enter Goodlife Fitness, I brace myself, take a breath and park my Type A personality at the door.   I am definitely the worst in the workout classes.  I don’t follow instructions very well and more times than not, do exactly the opposite of what the instructor wants me to do.  If I am supposed to lift my right leg, I will invariably lift my left leg.  Thank goodness, I am not an octopus, otherwise God knows what leg I would raise!  I have no style when it comes to working out.  Nothing comes gracefully.  Everything is painfully inelegant.  And it doesn’t matter how many times I go to a fitness class, I don’t seem to get any better.  I am the one that the teacher will call out most in the class because I am not displaying the right form.  I have noticed that strangers in the class will often show me what I am supposed to do because they notice I am not doing it correctly.  In one situation, an individual figured I did not speak English so I could not understand the instructor.  Each visit to the gym is a humbling experience for me.

In the past, I don’t think I would have handled this embarrassment very well.  I would not even try If I could not be the best.  Perhaps it was being a perfectionist.  Perhaps it was ego.  This time, though, its different.  I have become somewhat addicted to working out and love how I look and feel after.  My Aqua Fitness instructor commented that I have a smile from ear-to-ear from the time I start the workout until the end of it.  And she’s right.  Somehow, somewhere along the way, I am okay with being the worst in my class, not comparing myself to others and not worrying about how others see me.  I now focus on competing with myself and being just a little bit better each day.  What is more important to me is that I am in the game, trusting my body and doing what feels right for me.  In the process, I have become more accepting and understanding of others.

Cancer is a hard taskmaster.  It is a gift that comes wrapped in a barbed wire.  When I look back, I regret how many times I hesitated doing something because I knew I would never be the best at it.  Today I no longer stay in this safe zone.  I throw caution to the wind, let loose and let myself have fun.  I dance every morning even though I have no rhythm.  I cook for the heck of it.  I try new things all the time.  When there is no fear of failure, life expands exponentially.  I wish this is a lesson I had learned a long time ago – what might have been possible for me?  Now I am more than making up for past hesitations.  Life is a theatre and I have decided to live in the front row of my life.

 

Mid-way Checkpoint

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I am now mid-way through my chemo treatment for breast cancer: 3 chemo sessions done, with 3 more to go.  I wish I could say that with each chemo, things get easier.  The truth is that chemo is not very selective and cannot differentiate between good and bad cells.  It just invades the body and kills both good and bad cells.  And each chemo has a cumulative effect so that each additional chemo is worse than the one before.  Typically, I have found that the first 10 days of chemo for me are bad, and then things improve significantly and I join the land of the living.  Side-effects, when things are tough, include mouth sores, loss of appetite, no taste buds (so food tastes like sand paper), chemo brain, weight loss followed by weight gain, vomiting, diarrhea, nose bleeds and fatigue.  I think the part I have found most difficult is the fatigue, when even getting out of bed in the morning is a challenge.

This week I found out what was making me so exhausted.  My hemoglobin count has been dropping rapidly.  2 weeks ago, it was 83.  This week it is 62.  To put things in perspective, the average hemoglobin for a woman is 120 and hospitals will typically give you a blood transfusion when your blood count hits 70.  So today I spent the day at the hospital where I received 2 pints of blood.  As always, we respectfully named the bags of blood.  We called the first one Massimo (which means the greatest) and we called the second bag, Eva (which means life).  I said a prayer of thanks to the donors that gave me this gift of life, and then I prayed as each drop of blood entered my body happily and cheerfully.

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So, there are good days and there are bad days:

Some good days bring exceptionally delightful life events — Shayne is coming home on Saturday after being in Kenya for some time.  And, on Tuesday, we all fly to New York to attend Sabrina’s graduation from Columbia University!

Some bad days can be really challenging.  Cancer is a tough taskmaster.  I am learning that it is okay to be sad when things are difficult and take time to look after myself.  Sometimes this means taking naps, sometimes it is about asking for help, sometimes it is saying no to activities, sometimes it is just about having a good cry.  An equally important lesson for me is knowing that it is not healthy to stay in this state of sadness for long.

So, I have found an incredibly positive antidote to sadness:  having multiple projects to look forward to that enrich my life and feed my soul.  More on this in my next post!

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