As I mentioned in my last article, Cancerversary Turmoil, it’s been a very emotional couple of weeks for me…I’m realizing for my family, people who are very close to me and even some who aren’t always so close too. Christmas now takes on a very different meaning for us all. On Christmas day last year, I was sitting in my hospital room taking my daily chemotherapy – Arsenic Trioxide; my mouth still raw from the lesions that were healing. I know how that sounds; Arsenic Trioxide. When the doctor first told me the treatment plan, I couldn’t believe we would be fighting my cancer with poison. I guess all chemotherapy is poison but I, personally, had never thought of it that way. If an oncologist was delivering the news to you and he or she said, ‘You are going to need daily infusions of VinChristine’, you may think nothing of it. You may think of someone you know named Christine, or maybe Vin Diesel or maybe of Valentine’s Day. However, you likely wouldn’t think, ‘Wow, that is definitely poison!’. Sorry, I digress.
On Christmas day last year, my (then) boyfriend proposed marriage to me. I’ll never forget that moment. Being the engineer that he is, he made me a PowerPoint presentation with pictures of our daughters holding signs telling me how much they love me and how much he does too. He took his sweater off while I flipped through the slides and underneath, he was wearing a white t-shirt with #MarryMe written on it. If anyone had asked me how I thought he might propose, that may have been my answer…with maybe a different backdrop. I was literally hooked up to chemotherapy in my hospital room when he popped the question. While that may not have been the romantic setting I had dreamed of, it may have been the most meaningful one he could have picked. To me it meant, ‘At your very worst, I still want you to be my life partner. Even if we don’t know whether we will be granted tomorrow. I still want you’. I’m not sure I would have understood something like that prior to being sick, but I assure you, when you feel-scratch that, are broken and the love of your life obliterates your vulnerability and makes you feel special, it’s a memorable moment.
So here we are, one year later and what an incredible difference between this special memory last year and now. We are happily engaged and looking forward to planning our wedding. It was such a perfect day with our children in our home this year. No one can ever say it wasn’t a memorable Christmas last year. We unwrapped presents with our children on a blanket on the waiting room floor at the hospital but to be home today simply couldn’t be beat. Unfortunately, there is no denying the anxiety related to last years events, no matter how grateful I am or how special the new memories made are.
From the time I was discharged by the hospital on December 30th, 2017 to the end of April 2018, I made the 150 km trip to the hospital and back almost every day. Most days, I put my make-up on and a pretty pair of earrings and a necklace. I talked to as many people as I could and I walked the halls often, even if it was only 300 steps a day. I maintained a positive attitude throughout, even in the early days, because it’s what I needed to do to keep myself together. Towards the end of April, I couldn’t take it anymore. My body was exhausted, my mind was exhausted and I was just done. One day, for no particular reason at all, I cracked. I quickly came to realize that I hadn’t really felt much emotionally up to that point. That day at the end of April, was just the day those unprocessed emotions decided to flood back. The fact is, when dealing with an acute diagnosis it is common for a new patient to switch into survival mode as the first days, weeks or months mean the difference between life and death. It seemed to be a very subconscious shift which, in retrospect, I am grateful for. The thing is, like a check engine light, you can try resetting the computer if you want but whatever caused the light to come on in the first place, is still unresolved. I remember being comforted by my incredibly compassionate Nurse Practitioner, Kristine, that day. She hugged me and said so many helpful things, like it was ok to feel terrible and not talk to people. Even though some days were like the Juravinski Social Club, and I really enjoyed it, I didn’t need to be social if I didn’t want to. She even offered to put me in an isolated room if I needed to be alone during treatments. She is a shining example of what medical care should be.
To try tricking myself into believing the emotional fall out of the last year was done after my hospital breakdown would be naïve. All of the work I had done in my adult life to create control in my life had crumbled and so many of the things I believed myself to be felt like a lie. I felt painfully exposed. So, within three weeks of finishing the final round of IV treatment, I decided to start seeing a psychotherapist. In one of my most recent therapy sessions we spoke about the events leading up to my diagnosis which prompted my therapist to recommend a book (recently turned into a movie) called Brain on Fire. It is written by a young woman named, Susannah Cahalan, who very suddenly started experiencing dramatic neurological issues that, after weeks upon weeks of deteriorating health, went improperly diagnosed. When the doctors couldn’t figure out what was wrong, they tried to chalk it up to something outside of their training by suggesting a psychiatric institution. They couldn’t figure it out so it must have been psychological…right? Finally, they were able to diagnose and easily treat the autoimmune condition that was attacking her brain, which had caused so many deaths historically.
It has been months of feeling like I’ve got a good hold on my emotions, so I was completely shocked by my own reaction when Marvin and I watched the movie on Christmas day. I managed to keep my composure through the whole movie but completely lost it as the credits started rolling. It was just too close to home. I realized a couple things watching this movie. Firstly, I continue to have a hard time allowing myself to feel my emotions. I justify or logic them away, focus on the future, or outright deny them. I have always fought them as much as I can. Sometimes feelings hurt and I think it’s fair to say no one wants to feel pain, emotional or otherwise. But as mentioned above, emotions are like that check engine light. If we choose not to deal with them, they will rear their ugly heads and the longer we try to fight it and choose not to acknowledge them, the more it wreaks havoc on our heads, our bodies and our relationships. So, I let them in. A small victory! The other thing I realized is I’m angry. SO, so angry. I’ve spent the last year trying not to be angry. After all, so many people have reminded me just how grateful I should be to still be here. But the anger is still there. More so now than ever before.
Up to now, I’ve tried very hard to be as diplomatic as possible about my experience leading up to my diagnosis. My career and reputation has always been of the utmost importance to me and I know very well what it feels like to have your integrity questioned. As the source of my anger, this needs to be addressed in order for me to move beyond this anger. It’s not my own integrity that is in question but the integrity of my former family doctor and that of the triage nurse at the hospital where I received my preliminary diagnosis. There is a catastrophic issue which exists between medical professionals and patients. People are dying for no reason, whether it be acute leukemia, autoimmune disease or anything else. Before I address this any further, let me explain how I have come to this conclusion by sharing the story of what happened leading up to December 8th, 2017, the day I was diagnosed with Acute Promyelotic Leukemia.
I started feeling strange on November 17th, 2017, while grocery shopping. I starting feeling a migraine coming on. I had experienced a couple after child birth but it had been a long time and I couldn’t figure out what may have brought it on. It was, I supposed, a few weeks before Christmas and I had been incredibly busy, the weather was unusually warm which I remember well because my employer held an ice cream party on our office patio that week. Marvin, one of our daughters, and I were in the check out when my vision started blacking out. I had full vision in my peripherals but I couldn’t see the debit keypad while I was paying for our food. I also had piercing pain in my head. I asked Marvin to drive home. I knew from previous experience that my direct vision would clear soon and my peripheral vision would slowly narrow as the thundering pain took hold in my head. After sitting in the car for 5 minutes, my direct vision cleared as expected, but the debilitating, crushing headache never manifested. It was odd but I was thankful and left it at that. The next day, my mom, grandmother, daughter and I baked up a storm. We had begun transitioning my grandmothers Christmas baking tradition of making goodie baskets for family and friends, to my mother and I.
After baking for an hour or so, another one of those strange headaches started to creep up on me. I laid down quickly in hopes, I would be so luck as the last time and bypass the crippling pain in my head. Sure enough, it passed as quickly as it came on. The first time was easy to brush off but the second one worried me. The next day, I noticed a mild strange discomfort in my mid back. I had problems with my back all my life but I never felt anything quite like that. About 5 days later, after a workout at the gym, I was exhausted but pushed forward as the Christmas break was approaching and there was still so much to do. After a quick trip to the grocery story, one of my daughters and I baked together all afternoon. As a 36 year old woman at the time, with a very active lifestyle, I shouldn’t have been as tired as I was. I could practically feel the bags under my eyes sitting on my cheeks. And what was up with the headaches? The next day, I rose from bed with sharp pain in my hip. It wasn’t the first time I had experienced this but previously, such pain would have been caused by intense workout routines and not enough stretching. By midday, I couldn’t walk. Sitting was painful, walking was excruciating and laying down did nothing to relieve it. That night, I made a trip to my local hospital. I explained the pain and my back/hip history which didn’t raise any particular alarms and the doctor sent me home with a fantastic pain killer and muscle relaxer. If you’ve ever taken pain killers and muscle relaxers together before, you will be familiar with the warm and fuzzy blanket this potent combination wraps you in. Unfortunately, as a mom of young children, I did not have the luxury of being high all day long. Over the following few days I gritted my teeth through the pain, as it progressed into a locked hip muscle. It was finally time to visit my (former) family doctor. My relationship with her was still quite new as my family and I had only moved to our new town a year earlier. On December 1st, 2017 when I visited my doctor, we discussed my back/hip history, I explained what seemed to have caused the locked muscle, the meds the other doctor put me on and my need to function day to day. She prescribed two different medications that would not impair my ability to function. The prescriptions were Lyrica (a drug often prescribed for sciatica) and Meloxicam, an ibuprofen based pain killer. I took my first dose of each on the evening of December 3rd. The following evening, I noticed the first of the bruises. They were small, green and oddly shaped. Sort of how you would picture a paint ball fired against a wall. SPLAT! The following morning, I called my doctors office to ask about the bruises that seemed to be a side effect of the medication. The office manager took a message and promised to get back to me. She did so later that day with a message letting me know that the bruising was likely not a result of the medications but that I should let them know if it got worse or didn’t improve and if I had any other questions, I should speak with my pharmacist. That was it. There was no further inquiry related to what might actually be causing the bruising. No offer of an appointment to check it out. As a professional in the financial world, it is safe to say that I am not a bruising expert. Nor am I a medication expert. And so, while I was not thrilled with this response, I chose to believe that their response was an indication that there was nothing to worry about. The following evening, I stepped out of the shower and wiped the mirror off. I was shocked to see more bruises on my arms, back and legs. One on my right leg that was about the size of a baseball, puffy and painful to the touch. It was obvious to me that something that something what happening inside my body. As of that night I stopped taking the medication. It was also time to take matters into my own hands. So, I did exactly what every doctor will tell you not to do…I googled. It took about 20 minutes to find even one reference to blood cancer which was mildly concerning but didn’t reference any time sensitivity. To be honest, I couldn’t even fathom it as a possibility but my concern continued to grow. In the middle of the night, I shot downstairs to find the information sheet from the pharmacy, that maybe for the first time ever I hadn’t thrown out, and written there was exactly what I suspected I would see:
In the moment that I read, ‘Tell your doctor right away if you have any serious effects, including: easy bruising…’, I felt rage. I was so angry at my family doctor and I was just as angry at myself. I knew I should have trusted my own instincts but I let my doctors incomplete assessment go without further question because I was ‘too busy’. I felt betrayed, although I’m not sure why. She had already displayed a general disinterest for my wellbeing in previous meetings. I will admit fully, because it is not above me to do so, that when I called back the following morning, I was not the best version of myself. Rather than provide any information or help, the office manger I had previously spoken to scolded me for my tone and defended her employers actions. I was clearly not getting anywhere. Even when offered an appointment, I had to decline. It was obvious I could not trust this doctor so there was no good reason for me to return. But this left me in a predicament. While I was covered in bruises, I did not feel particularly ill. I wasn’t in pain anymore from my hip. Yes, it was definitely uncomfortable and it seemed the rest of my body was following suit but I figured it was just from taking a cocktail of different drugs over the last week. It didn’t seem I was in any immediate trouble, besides one of my kids Christmas concert was that night and I had already missed my company Christmas party (which is ALWAYS an epic party) and I wasn’t about to miss this concert. Then I started bleeding. WARNING! This is about to get graphic. For the record, things got a lot more graphic than this in the days to come.
As a woman who has always been pretty lucky to not experience severe symptoms of having a period, I just figured, ‘I’m not getting any younger. Must just be age starting to catch up with me’. But that day, was like no other. It was definitely alarming but I was on my way to my daughters Christmas concert and nothing was going to stop me. Certainly not a heavy period. After the concert, which was nearly impossible to smile through, Marvin said something that shot panic through my spine. As a man who typically has little to say, he spoke up, ‘Maybe it’s time to go to the hospital’. Per one of my earlier admissions, I stomped that fear back down. I was so so tired and the only thing I could imagine doing was getting into my bed after the concert. As I got ready for bed that night, I noticed small red dots on my arms. I knew immediately what it was. It was blood vessels breaking in my arms. Still, I brushed it off believing that having no pain was equivalent to no danger. So, I went to sleep.
The next morning, I felt just as awful as I had the night before. My condition had not improved overnight at all. If you had looked at me, you wouldn’t have thought anything unusual. With the exception of the cold sores that had broken out on my lip and didn’t seem to be healing, I looked perfectly healthy. Normal. Contrary to how I looked, I felt like getting out of bed and putting one foot in front of the other would have been next to impossible. Marvin’s words ringing in my head, I sat on the side of my bed for about 30 minutes that morning, listening to my kids get ready for school, debating whether I should go to work. My dedication to my career and guilt for missing time the week prior, made it hard to justify taking more time off. I remembered speaking to a nurse at 1-800-TELEHEALTH once about symptoms of a cold my daughter had once and decided to give them a call again. I’m not sure why but it still seemed ridiculous to me when the nurse finished collecting details about my condition and provided advice. She told me in such a cool and collected manner, ‘Go to the hospital immediately. Do not drive. I will call you an ambulance if you need one. How dramatic, right? Like the incredibly stubborn woman I am, I did exactly what I felt needed to be done. I got my daughter ready for school, dropped her off and drove myself to the hospital. What happened next blew my mind.
I was fortunate to be only one of two or three people in emerg that morning. I sat down in the glass cubicle with the nurse to explain what was happening, ‘What seems to be the problem?, she asked. I said, ‘Well, I started taking these medications for back pain a few days ago and now I’m covered in bruises, it seems my blood vessels are bursting and I have the heaviest period I’ve ever had’. Unconcerned, she responded, ‘The doctor is probably going to tell you to just stop taking the medication,’ to which I replied, ‘I’ve already done that but I don’t know whether that is making the problem worse or better. I’m afraid that just stopping may not have been good for me either.’ I was met with a blank stare. Then, ‘So you’re here for a heavy period?’ This was clearly not going to be an easy conversation. In the calmest, most polite tone I could muster, I said, ‘I am here because I spoke with Telehealth this morning and they recommended I come here immediately’. I was floored by her response, ‘Ya, we call Telehealth 1-800-GOTOEMERG around here’. That was it, I lost my cool, ‘I don’t care what you call Telehealth around here. I am covered in bruises. This is not normal. I am bleeding like crime scene investigation and I NEED to see a doctor!’. That was enough to get her moving. Lack luster as a piece of cinderblock, she said, ‘Well, we aren’t very busy this morning so I guess we can take a couple vials of blood to see if there’s anything going on’. I couldn’t help but think there should never be an instance where a triage nurse makes you feel like an idiot for being concerned for yourself but here I was, at a loss for words. If it had been any other day, it may have been a very different interaction but I was tired…Like, 1st trimester driving home at the end of the work day, in the slow lane doing 10km under the speed limit, holding my eyelids open with clothes pins so I don’t crash, kind of tired. And so, I just let it go. I needed to be in the washroom while I waited for a doctor. It wasn’t very long before I was called in. Since I was in the washroom, it took me a few seconds to get myself together enough to re-enter the waiting area but the nurse that called me was already gone. I picked up the phone on the wall by the door to the examination hall, to ask to be let in. The nurse returned and very abrupted demanded I follow her. I was completely stumped by the way I was being treated. What had I done to these people to be spoken to in such a manner?!
It was about an hour later that the preliminary blood results came back. They must have known, or at least suspected what was happening. The doctor told me further testing would need to be done and she recommended I stay in the hospital while my blood was couriered to another hospital for further testing. It was also about the same time the abrupt nurse came into my room with a much gentler tone and an offer of a warm blanket. Shortly after, the triage nurse entered my room I’ll never forget what she said, ‘Well, it’s a good thing you insisted on seeing a doctor’. That’s it, that’s all. Not even an apology. Three hours later, I found myself 75kms away from home in a cancer hospital, hooked up to three IVs being pumped full of multiple blood products in a race to save my life.
Why did it take a cancer diagnosis for these people to treat me like a person in need. I had never met them before. Maybe I wasn’t the most cheery, bubbly conversationalist on that particular day but does that mean my concern for my health should have been met with complete condescension and invalidation? Or that I should have been spoken to like a multiple homicide convict just processed into the jail they would likely spend the rest of their life in. No. Absolutely…NOT. Barring physical violence, there is no good reason whatsoever to treat someone the way I was treated that day. It was bad enough I had to face an acute cancer diagnosis and possible death but the fact that I had to FIGHT to get to that point was shameful.
It has been a full year of me resetting the check engine light. Rather than being angry about this, I made a mental note to deal with it later. I had a bigger battle to fight and I couldn’t spend any energy on the appalling revelation that maybe I’m not the only person who has been treated this way. So, I spent the next two months fighting for my life. As the weather turned and spring started to blossom, I decided to look into how to deal with the events leading up to diagnosis. I decided to go the formal route of launching a complaint with The College of Physicians and Surgeons of Ontario. I filled out form upon form in the midst of chemo brain. One of them took me three tries to get right. I included a complaint against my family doctor and tried to include a complaint against the triage nurse. With the first acknowledgement of my complaint, I came to learn there is a separate organization responsible for complaints against nurses, The College of Nurses of Ontario, and that I would have to start with the hospital first. It’s ironic because I feel like I have overcome incredible odds over the last year but something so simple as walking into that hospital, I just can’t do yet. It has been six months since I filed my complaint. I still haven’t been able to step into that hospital but two days before my 38th birthday, I did receive the final decision from the College. It was big, heavy envelope. I thought, ‘What could they have sent me?’. Inside was a letter from the College explaining how they had come to their decision on how they would proceed. The resulting action of an investigation could be anything from no action at all, to requiring further training, to stripping a doctor of their license. I wasn’t out to have her license taken away but something had to be done. If I had died, she would have, at least, in part been responsible for my death. What’s more, I couldn’t accept that this could happen to anyone else. Ultimately, the College determined that she neglected her duty to be inquisitive. However, they disclosed that she had never had a complaint filed against her. For these reasons, she was ‘advised’ to speak directly with patients who raise concerns such as medication side effects instead of passing messages through her staff. She was also ‘advised’ that when a patient brings such a concern to her attention that she be inquisitive as per the Colleges Practice Guide: Medical Professionalism and College Policies. She has been advised.
While I respect and understand the College’s decision, I don’t feel that justice has been served. Maybe I’m biased. All I can do is hope that the warning is enough to teach that doctor to care more about people. I’ve tried hard to just be grateful for being here recovering from the worst experience of my life. But every day, I can’t help but wonder, had I been taken seriously the first time I called my doctor, or if her office manager had put her ego aside and understood there was a much bigger problem than my tone, would I still have been deemed high risk? Would I have had to endure those 4 doses of the chemotherapy Idarubicin, specific only to high risk patients, that made my hair fall out, just about stopped my heart and covered the inside of my mouth with lesions? (By the way, Arsenic Trioxide was like a trip to Disneyland in comparison to the Idarubicin). Would I still be exhausted and dealing with side and after effects that make it hard for me to be out of my very controlled environment? Might I have been back to work by now, making my full salary and moving forward with my families life plans? Would I still have had to take oral maintenance drugs for 2 years to maintain my remission (which could cause any number of catastrophic consequences later in life)?
At the rate Acute Promyelotic Leukemia moves-with the period of onset to mortality being seven to twenty eight days-it’s possible that the four days I spent trying to get someone to help me could very well have made the difference in how horrific the treatment was and continues to be, and watching the movie of that young woman whose parents had to fight so hard for her made me feel angry, and helpless, and sad. Just today, I read about a one year old girl named Addison Leigh, whose mother took her to the doctor twice before her concerns were taken seriously and it may well have saved her daughters life. She was diagnosed on her third trip to the hospital with Acute Myeloid Leukemia and admitted to McMaster Children’s Hospital in Hamilton, Ontario to begin immediate treatment. For more information on this story or to support this family in need, go to their Facebook page here. I am fortunate to be alive. I will deal with the repercussions of this experience for years to come, I’m sure. The fact is, I just don’t see the world the way I used to. I’m grateful that my eyes are now open, but the world is a scary place. Even still, I’m here. At the end of the day, the silverlining is this; I’ve never been so driven to change anything, as I am about changing the way human beings are treated by other human beings in all medical settings. Every life matters and if we are going to stop people from dying for no reason, we need to speak up and advocate on our own behalf and on behalf of those who can’t. If it means seeing a therapist to help you deal with the emotions of having cancer, caring from someone who does or standing up for yourself when you are being mistreated, it is perfectly reasonable and within your right to do so. I would go so far as to say it’s even your social responsibility to protect others from the same. The bottom line is, it’s not just your life that may depend on it.