One of the best ways to heal yourself and to help heal others is to share!
If you are a fighter, survivor, caregiver or a medical professional and you have a story of courage, bravery or triumph, I would love to hear from you! Please email me your story, along with a picture of yourself or one relevant to your journey (if you’d like one posted) at Michelle_Burleigh@Hotmail.com or by clicking on Contact in the above menu.
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AS SOON AS THE DOCTOR ASKED ME HOW OLD MY KIDS WERE, I KNEW I WAS IN TROUBLE
July 15, 2018 – So You’ve Got Acute Blood Cancer…Join the Club!!!
BY: MICHELLE BURLEIGH
I grew up in a household that struggled financially and the focus always seemed to be getting through a day rather than living a day. I’ve never been the type of person to accept anything less than exactly what I want. Coupled with an intense drive for financial security, this led me to spend the majority of my adult life believing that success is associated with career development, financial gains and material things. Later, my daughters future success also became part of that focus.
I graduated high school in 1998 and went straight to work. In 2001, I fell into the financial industry when I landed a job with a major credit card company in Vancouver, British Columbia. As it turns out, I really enjoyed learning about the financial industry and helping people. Over the last 17 years, I have worked tirelessly to drive my career forward, sometimes to the point of crashing and suffering physical illness and mental exhaustion. All the while, focusing very little attention on nutrition and wellness. At times in my life I’ve decided to lose weight (let’s be real, every summer for a new Caribana costume and tropical vacations), usually it was done by liquid diet, starvation and insane working out. Wellness was limited to getting on a plane to party for a week (Caribbean partying? No regrets there!!!).
The birth of my first daughter, Victoria, really sparked my interest to learn about having a proper nutritious diet. Growing up on processed foods and sugar, like everyone else in the 80’s, has unfortunately led to battling brutal eating habits. Quite frankly, has very likely contributed to me being right here writing this story. I have spent the last 6 years struggling to make healthy choices and ensure she, and then they, are raised having a healthy relationship with food. To be honest, Victoria has an iron clad will and is as stubborn as her mother (my mantra is, ‘It will do her good in the long run’…usually accompanied by wine). Isabelle is an awesome eater. Victoria and I certainly have our food struggles now but if at 6 years old she feels like she’s rebelling from the cooked vegetables I put on the table for raw ones in the fridge, be both win every time.
I started feeling generally unwell toward the end of November 2017. I started having headaches that were impacting my vision. The pain wasn’t unbearable but I couldn’t see which was scary. They also seemed to come on with physical activity; cooking, grocery shopping, housework. I didn’t think much of them because it was November and still hot outside. I figured it was just related to the unusual weather. After a workout at the gym, a muscle in my hip locked for a number of days. I visited my doctor who prescribed a pain reliever called Meloxicam. Within 24 hours, I started bruising for no apparent reason. The following day, the bruising became worse. Some of them were small and irregular shapes and colors. Some were large and dark and puffy. I also noticed that I was incredibly fatigued. In fact, I couldn’t even finish preparing dinner for my family that night. I was too tired, and one of those strange headaches was taking hold. I had also broken out in coldsores on my mouth like I’d never had before and they weren’t healing. The day before I was diagnosed, I noticed blood vessels bursting on my arms. I had also started my menstrual period and the amount of blood was unlike anything I had every experienced before. I had called my doctors office twice during the course of these 3 days prior to diagnosis and was told what I was experiencing was likely not medication related and I should call my pharmacist for more information about the medications (have I mentioned bruising, breaking blood vessels and excessive bleeding and tell tales signs of leukemia?). I was even scolded by my doctors office manager who didn’t like my tone. Side note, I have a new doctor now. I visited the emergency room the next morning. In retrospect, I should have known sooner that there was something seriously wrong. But as a busy mom and career woman who was in the process of preparing for Christmas parties, hosting Christmas dinner and just living the daily grind, I did not have time to feel sick. So, I ignored it and kept going.
I spent 5 hours at the hospital the morning after the bleeding started, after having to argue with the triage nurse to even see a doctor. I guess I didn’t look sick enough? They took bloodwork which revealed some odd results and so they sent my blood to another hospital for further assessment. The doctor did mention that my platelet count was low and it could be anything from my spleen eating up platelets to, worst case scenario, cancer. It was said so non-shalantly. Ironically, I clearly remember thinking, ‘I hope it’s not my spleen. I don’t want to have surgery!’. I was more worried about scarring and cancer didn’t even register as a possibility.
I’ll never forget the doctor coming into the room with the diagnosis. She asked me how old my kids were and I knew I was in trouble. I didn’t answer her question and instead asked her one in return, ‘Is it worse case scenario?’. She said, ‘It’s never easy to tell anyone this. You have leukemia’. My first thought was, ‘People don’t come back from this. I’m going to die’.
It was terrifying and devastating. As a seemingly healthy woman, raising young daughters and nurturing a thriving career, I thought, ‘I’m not done here yet’.
My mother and I already had plans to spend that afternoon together so when she arrived at the hospital, I told her the news. I immediately texted my boyfriend to leave work immediately and come to the hospital. He was in the hospital room with me within an hour. I told him in person in the hospital. I felt sorry for my mom. Like I needed to protect her from what was coming. And I felt shame when I told my partner. I felt that we are too young to be dealing with this. We should be happy and growing together and thriving together. Instead, I knew I would have to rely on him to help me through whatever was coming and he may even have to face my death only months after losing his father. I felt guilty. As a mother, I immediately felt helpless and inadequate. Like I had failed my kids.
The immediate 80 minute drive to Juravinski Hospital in Hamilton, Ontario, where I would be admitted for treatment, is the time I used to call my father, brother and best friends. Two days later, the hematology team confirmed that I had Acute Promyelotic Leukemia. When my oncologist visited me in my room to share the news he was very clear and concise in his explanation of what we were dealing with, and what was in store in the coming days, months and years. He told me that APL is a subtype of Acute Myelotic Leukemia (AML) and one of the most rare forms of leukemia. He also told me there was good news and bad news. The good news was, it is the most curable form of leukemia and the prognosis was 90% full recovery. The caveated was, I had to make it through the first 10 days of treatment. He also followed up that statement by assuring me that I was young and healthy and my chances were good. And finally, he revealed that the disease was so far advanced at the time I was admitted that had I not visited the hospital, I would likely have experienced an internal bleed that would have killed me within 24 hours.
It’s incredible how the human brain processes this kind of news…or maybe just doesn’t right away. There was no time to digest this information, there was no discussion about options. I was dying and I had to trust these people to stop that from happening.
I don’t think I felt much at the time the doctor shared this information. I did not have time to feel anything. I was headed into the fight of my life and my energy needed to be 100% focused on the fight. I focused on things like how much my daughters need me. I focused on the home renovations my partner and I wanted to do. I focused on all the things we wanted to do with our family, like getting married and taking our kids on a Disney cruise.
The first time I was really afraid after the initial diagnosis was the night my heart rate dropped. I had already received my first dose of a chemotherapy called Idarubicin and nicknamed ‘The Red Devil’ and it turns out it is very appropriately named. My heart rate dropped to 38 beats per minute and stayed between 40 – 50 beats per minute for a week and a half.
I did a great job of ignoring the fear during the day but when I laid my head on my pillow at night and couldn’t feel my heart beating in my chest, the fear took hold. It was the most lonely and helpless feeling in the world. I started writing people. In particular, people I hadn’t seen for a long time and thought should know I might not be around much longer and people who I had insights about that I wanted to share before it was too late. For example, the owner of the nail salon that I had started visiting a year earlier. She is a kind, compassionate and brave human being and I needed to tell her that (go see her at Pink Nails & Beauty in Georgetown, Ontario!!!). I spent countless hours looking at pictures and videos of my family, reminding myself why my heart could not stop. My family needed me.
I spent 22 days in the hospital receiving red blood cells, platelets, cryoprecipitate (my blood wasn’t able to clot on it’s own), antibiotics, chemotherapy, x-rays, ultrasounds…the list goes on. I finished the first phase of treatment in mid-January 2018 and at the end of the month received the results of my second bone marrow biopsy. I was in remission, and the cancer was undetectable. I don’t think I’ve ever felt so relieved about anything in my life as I was when I got that phone call.
After 4 more months of IV treatment almost daily at Juravinski, I started the final phase of treatment. This is the longest and least climactic phase of treatment as the immediate danger has passed and we are now working towards maintaining remission. As it turns out, I have a genetic mutation called FLT3 which puts me in the high risk category. Meaning I will take oral chemotherapy for a total of 2 years following IV treatment. I’m not exactly sure what the long term looks like for me. What I know is, emotionally, this is the hardest phase to deal with. Not only have all of the emotions I didn’t allow myself to feel over the last few months whack me like a Louisville Slugger, I also have to come to terms with the reality of my new normal. The world can be a scary place after treatment and learning how to live life to the fullest and manage the new threats like, sun sensitivity, long/short term medication side effects and post-treatment trauma is no small feat.
I have spent my whole life planning for the future, working hard and spending very little time in the present. While planning and working hard for what you want is important, NO ONE is guaranteed tomorrow. While, I wouldn’t wish this on anyone, I can honestly say there is a silver lining. I’ve come to the realization that when I am laying on my actual death bed (hopefully when I’ve had many many years of dragging Marvin out on crazy adventures), I won’t be thinking to myself, ‘Man, I really wish I had moved that light fixture in the ensuite bathroom!’. It’s the time we spent together, living life, having fun, appreciating our family and watching our kids grow. That’s what I want to remember on my dying day.
I TOOK PAIN MEDS, ICED THE SPOTS THAT HURT, AND CONTINUED WAITING FOR THE PAIN TO GO AWAY
July 31, 2018 – So You’ve Got Acute Blood Cancer…Join the Club!!!
BY: ALEXA PICKENS (email@example.com)
I was 19 years old when I was diagnosed with cancer. I was in my second year of University, and overall, I was exceedingly healthy at the time. I worked out regularly, focused on my school work, ate healthy and I didn’t smoke or drink. The diagnosis came as a complete shock, and the life-threatening complications that I endured during treatment were just as incomprehensible.
It all started in October 2013, when I woke up in the middle of the night with the most excruciating pain I had ever felt. I remember crying in agony, popping pain meds like they were candy and laying on the floor trying to get back to sleep so I could be rested enough for my midterm exam the next morning. The pain subsided enough for me to catch a couple more hours of sleep, but the pain would not let up for a week. This viscous cycle continued for 4 months. I was in tears from the pain and lack of sleep. Going to school, working out, and working were next to impossible, but having been an athlete most of my life, I took pain meds, iced the spots that hurt, and continued waiting for the pain to go away, all while I tried to live my life as normally as possible.
Finally in February 2014, I went and saw my doctor, no longer able to handle the pain and exhaustion. The bone scan I did revealed that I had a compressed facture on my L5, and after further investigation with an MRI, it was determined that a tumor had caused the fracture. There were also more tumors spread along my spine, neck, pelvis, ribs and sternum. I was given high doses of steroids, morphine and valium while doctors and pathologists tried to figure out what kind of cancer I had and over the next 2 months would be poked and prodded more times than I can count or remember. First doctors thought I had Lymphoma, then Multiple Myeloma, then Ewing’s Sarcoma. The results of bone marrow biopsies and blood work always came back either inconclusive or normal. The only thing doctors were sure of was that I did, in fact, have cancer. They eventually determined that it was a form of leukemia but were unsure if it was Acute Promyelocytic Leukemia (APL) or Acute Myelocytic Leukemia (AML), and had no definitive way of determining which one it was.
I was about to be referred to the Mayo Clinic in the States when I got the call on April 22, 2014. I was finally diagnosed with APL after 2 very long and uncertain months. I went to the hospital that night, and the next morning I began my first dose of ATRA, followed by Idarubicin, and then Arsenic + ATRA. Treatment was going really well. I was almost bored as I was not feeling any side effects from the chemo. I was running out of shows and movies to watch while I lay in my hospital bed.
Unfortunately, about 11 days into treatment, the boredom was replaced with chaos and I began my first bout of complications. This would continue for the next 3 months and almost take my life on more than one occasion. My heart needed to be restarted twice as it was beating at an alarming rate, I developed differentiation syndrome –extreme swelling of the body- which caused my small intestine to perforate, and bleed profusely for weeks. During this time, I developed a blood clot close to my heart due to the PICC line that was inserted in my arm, and then became septic due to the tearing in my bowels. The sepsis caused bacterial meningitis. Since this had gone undiagnosed for so long, I needed emergency surgery and was put on life support as I was comatose and showed little to no cognitive function. My family was told to say their goodbyes and there wasn’t anything more they could do for me. At this time my family sent my file over to a family friend who works for the CDC in Winnipeg. He discovered a procedure that involved injecting vancomycin through the temporary shunt directly into my brain. This procedure has only been done a handful of times successfully in the States, but has never been done in Canada. When my family brought this information back to the ICU doctor, he explained the risks to my family. He told my family that this injection could do 1 of 3 things: it would do nothing, it would kill me, or if it worked, I would be left with severe cognitive and physical impairments and most likely need to live in an assisted living facility of some kind. My family decided to go along with the injection despite the risks. Several hours later they were told to come back and say goodbye, as the injection didn’t seem to have worked. Fortunately, the next day my stats began to improve, and I was beginning to make a miraculous recovery. I ended up developing hydrocephalus because of the infection in my brain, and so I was rushed into surgery for a second time where the surgeon inserted a permanent shunt into my brain to help with the inflammation and fluid build-up.
During these months, I had spent 41 days in and out of ICU in critical condition and lost a staggering 50lbs. I was 140lbs when I started treatment, and dropped down to 90lbs. I suffered severe muscle atrophy in my arms and legs; so much so doctors told my family I would never walk without a mobility aid of some kind. I don’t remember most of what happened to me as I was in and out of a comatose state and given high doses of fentanyl, dilaudid, and morphine during these months.
I was eventually able to leave the hospital and resume my treatment as an outpatient. I needed to learn to walk again and gain my strength, so after chemo, my nights consisted of physiotherapy, occupational therapy, and recreational therapy to help me regain function in my brain and muscles. I was hopeful it would help reverse some of the deficits I had developed. My family was not sure if I would ever regain full cognitive or physical function again, there was still so much uncertainty about what my future would look like… It was exhausting, and there were so many times I wanted to give up. I had developed a severe skin reaction as a result of the treatment and had painful blisters and rashes throughout my entire body. Physio exercises, let alone moving in general, was extremely difficult. I was told I was in remission on October 09, 2014 and finally finished my IV treatment January 23, 2015, resuming with the maintenance round up until November 20, 2016. During this time, I had returned to my studies, and eventually transferred universities to pursue recreational therapy. School became a great distraction for me and gave me a bit of the normality back that I had been craving so much.
A week after I finished my maintenance round, I experienced severe pain in my left hip and began limping quite a bit. I, of course, ignored the pain as it was far too familiar from the pain that I had felt from before; I didn’t want to believe that my start to a new life was going to consist of more pain and more doctors. February 10, 2017 I was diagnosed with Avascular Necrosis in both of my hips because of being on high doses of corticosteroids and treatment. I had a bilateral hip decompression surgery on May 15, 2017 in hopes of treating this condition. Unfortunately, it did not work, and I would require a full replacement of my left hip.
Being diagnosed with cancer at 19, put on life support at 20, going through chemo treatment at 21 and 22, having hip surgery at 23, and a hip replacement at 24, I have struggled with feeling like my 20s have slowly slipped away. This is supposed to be a time about finding yourself as a person, getting your undergraduate degree and maybe your masters, and starting a career. I am going to get my undergraduate degree, and I will eventually get to where I want to be in life, just not the way that I once thought I would. Trying to live a normal life with chronic pain and dealing with medical issues has not been easy, but it has taught me how fortunate I am, and how resilient I am. It has shown me that no matter what life throws at me, I will be able to get through it. There is a purpose for me. These past 4 years of my young life have taught me so much, and I am forever grateful for that. It’s so easy to look at the negatives in our lives, but when we take the time to see the good, to see the positives, we realize how lucky we are and how strong we are, and most importantly we learn to appreciate the little things in life and those who have stuck by when things went a little south.