The Faces of Blood Cancer - APL

According to the Leukemia and Lymphoma Society of Canada’s webpage they are now showing there are 5 main types of blood cancer. There are 137 forms of blood cancer and related disorders that are grouped into one of these 5 types. 

I’d like to introduce you to my friend Michelle Burleigh who was diagnosed with a unique subtype of AML called Acute Promyelocytic Leukemia (APL).

She is a patient advocate, working with several organizations, to help bring awareness to understanding patient experiences within the Canadian Healthcare system. You can check out her BLOG and I also highly recommend her BOOK. 

Here is a bit of her story in her own words.

If you had asked me who I was 6 years ago, I would have told you that I was a relentless, independent career woman who had lofty dreams that included luxury vacations, a big house with a pool and an ensuite bathroom jet tub. 

If you had come to know me then, you would have learned that I came from very humble beginnings and as a result, I pushed the boundaries of life in a way that allowed me to succeed beyond my own expectations.  What you also would have learned is that I suffered for it.   I didn’t sleep enough, I didn’t eat a proper nutritious diet and I wasn’t getting enough exercise, unless it involved late night dancing and gin.

You would have come to realize I was stressed out and suffered from extreme anxiety and, on paper, though I was doing well, my spirit was screaming.

I would have spoken with such great pride of my children, the superior education they were receiving and all the amazing activities they were a part of that I never got to be part of as a child.

I wouldn’t have told you about them being in school for 10 hours a day because of my work commitments or my lack of focus during the time we spent together because I was too busy checking email or thinking about our next move.  That is not to say I have a demanding employer.  In fact, they have been quite supportive over the years.  Rather, this was a result of having unrealistic expectations of myself.

I wouldn’t have told you that my families move to a quaint, small town outside of the GTA which was supposed to enrich our lives had turned out to be the single biggest stressor in my life because the time I began spending commuting was the time I used to spend in the gym. 

6 years ago, I was at my wits end.  

On December 8^th, 2017 my world was flipped upside down.  After feeling generally unwell for a few weeks, and then experiencing some unusual bruising, I took myself to my local emergency room for assessment. 

After having blood drawn, the doctor returned to the room and asked me how old my daughters were.  I knew I was in trouble. 

I was diagnosed with Acute Promyelocytic Leukemia that day and told I would have to go to a cancer centre immediately to begin treatment.  My first thought was, ‘People don’t come back from leukemia.  I am going to die’.

After my first bone marrow biopsy, I was told that my bone marrow as comprised of 90% leukemia cells, and had I not gone to the hospital when I did, I would likely have sustained a brain bleed that would have ended my life within 24 hours.

When my oncologist came into my hospital room and explained the game plan to me, my jaw hit the floor.  My treatment plan consisted of 2 different IV chemotherapies and several supporting oral medications.  The thought of what I was about to go through was almost too much to bare.  I was in shock, I was heartbroken for my family and I was terrified for my life.

The 22 days I spent in hospital, and the following 4 months of nearly daily treatment as an outpatient, was the single most difficult challenge I’ve ever experienced.  I felt like I had been stripped almost down to nothing.  I wasn’t the independent woman I had always been, and I felt powerless. 

A previous control junkie to manage my hectic and stressful life, and I had no control over anything.  Except one thing.  My attitude.  I relentlessly fought my leukemia with the phenomenal help of my medical team at Juravinski Hospital in Hamilton. 

I achieved full molecular remission in March 2018.

If you were to ask me who I am today, I would tell you that I am not the same person I was 6 years ago.  My battle with cancer has changed my life and the lives of my family forever. 

Having been forced to live every day fighting to win THAT day has taught me to be in the present.  Beyond that, it has taught me to appreciate the present.  I see the world around me from a very different perspective.  The sky is a little bluer, the leaves on the trees are a little greener and the fiery fall mums remind us of the coming cold.  I feel calm in my mind and in my body that is a result of no longer worrying about tomorrow.  

I live by the practice of doing everything I can that I would regret if I didn’t, no matter how afraid or embarrassed I may be, and I am teaching my children to do the same. 

I see people who are still caught up in the rush.  Disconnected from everything around them and even themselves and I feel for them.  Rather than feeling angry that the car in front of me is moving too slowly or the person at the counter in front of me is taking too long, I feel patience.

I experienced a renewed passion for helping people, which is why I launched my website, www.SoYouveGotCancer.ca, where I have blogged about my experiences with cancer, shared the stories of other blood cancer survivors and share information I hope will help people navigate a little easier or at least help them feel less alone through their own journey.

I also began utilizing my decades of business experience coupled with my lived experience as a patient to start affecting positive change within our Canadian Healthcare system, by working with several organizations to help them better understand the patient experience and where gaps in processes create unnecessary challenges during already difficult times for people and their families.

Maybe the most important lesson I’ve learned is that life is not perfect, it is not a straight path to success and the meaning of success is different for everyone.  I’ve learned that the important part for me is to surround myself with people who love me and support me and will enjoy the journey with me. 

Twenty years ago, a leukemia diagnosis was practically a death sentence.  Though my treatment course was a total of 26 months, I was given a new lease on life with a fresh set of eyes. 

To everyone who is going through a similar horrific experience, you are not alone.  Know that how you spend every ounce of your energy matters and so you can choose to use it in any way you see fit.  Be ruthless with it.  And always, always remember that you are your best advocate.