Sample Text from Trust Your Doctor: Memoirs of a Patient

To follow is a short sample of my book which I hope will be published shortly as I finalize editing. I welcome all feedback as it may help me improve!

Who is the best doctor? What is the best treatment? These were the questions that dominated my thoughts on September 1, 2022. It is incredibly hard as a patient, to navigate the medical system. The difficulties extend far beyond matters of science or fact—those can be approached through reading, studying and familiarizing. The greater challenge lies in the institutional protections that surround medicine and its practitioners, creating barriers that make clarity, accountability, and justice extraordinarily difficult to attain. Injustice exists in every sphere of life, but when one’s health, quality of life, and their well-being are at stake, the consequences are far more profound. This is the very reason why I firmly believe that recounting my experience is paying it forward by illuminating the path for others who are going through health challenges, have loved ones going through them, or who is seeking to approach medical care with greater caution and awareness.

I was faced with difficult, life-altering decisions in September 2022. This was one of the darkest times of my life. I was overwhelmed by depression over obtaining a cancer diagnosis in my early thirties, the loss of my health, the loss of my freedom and dependence on family support. At times, it felt like an out of body experience and I was a spectator to another person’s journey. Merely four months later, out of need not want, I embarked on a journey to leave Canada and to get treatment abroad in the USA.

Q: Who leaves Canada with it’s universal free healthcare to pay hundredth of thousands of dollars for insured treatment across the border?

A: I did.

Q: Why?

A: Because expert specialized care was not available, not accessible, and not offered.

Q: Doesn’t the Out-of-Country Healthcare Committee cover the treatment expenses when such treatment is unavailable at home?

A: No. The operations of the Committee are not transparent, politics shapes the outcome as does subjective opinion of doctors who are non-experts in the subject matter tasked with making expert decisions. We all know that there are flaws within our healthcare system. Mistakes happen, medical malpractice happens, but taxpayers protect the system because it provides equal access to all, or so we are made to believe.

Q: Besides, what is the alternative? Private healthcare like in the US?

A: Canada’s population is eight times smaller than that of the US or a mere 12% of the size of US population. It is a ridiculous comparison and one that should never be made. What taxpayers could consider, however, is a middle of the road approach with both public and private healthcare such as in European countries like the United Kingdom, Germany, even Ukraine, the poorest country in Europe right now.

Q: How does a different healthcare system solve the injustice and institutional protection problem?

A: No solution is ideal but a little competition is healthy, it’s necessary. It could save lives by taking some of the burden off of the public system and by allowing people who would otherwise seek treatment abroad an option to spend money at home. My case is unique, it is 1 in 300 million, but my case highlights the issues all the same.

Q: Do you have a political agenda in writing this story?

A: No, I do not have a political agenda and my memoir is outlining my personal journey through a health crises. I merely touch on politics which shape the current system and hint at my own vision of where healthcare reform could head in Canada.

My own friends who work in the medical field, could not comprehend all of what was happening during this short interval of time in my life between 2022 and 2023. Unless you go through it yourself, it is also impossible to understand that a doctor can adamantly insist on treatment even though they are not competent to execute that treatment. After all, we are wired to trust our doctors. Patients, in a sense are the unsuspecting victims of egocentric individuals who are invested in protecting their own practice and their own image. That is not to say that there aren’t amazing kind and compassionate doctors out there, but those are not the ones to be weary of. It is most important to recognize, to ask the right questions, and to be on guard so that you will not become somebodies victim or another doctor’s salvage surgery. We are all human, we make mistakes, but some mistakes can cost a life, a family. The stakes cannot be any higher.

My first encounter with dubious medical practitioners started with someone I am going to call Dr Done, a Canadian orthopaedic surgeon who I was referred to after years of suffering from neurological pain in my left arm. As far as first impressions go, having met him, all I noticed really is that he was exceptionally tall, had huge hands with super long fingers, was very confident, ego-centric to a fault, and zoomed around the hospital like a coyote on a mission. He never stayed at anybodies bedside for too long. He never asked personal questions like, ‘how are you doing’ or ‘how are you feeling'. He also answered his patients questions with 2-3 words max, never really elaborating or trying to engage in an actual conversation. I know all this because my first pre-op encounters with him were in a hospital setting where sheets separated patients and I could both see and hear everything that was going on around me.

It is no surprise, I suppose that both the treatment and the outcome of the above was a disaster. Not only did the original nerve pain in my arm not regress after his surgery, but also new symptoms surfaced post-operatively which effected my quality of life and well-being.

As a patient, I was forced to advocate for myself which felt more like begging for someone to help, to care, to take charge. After multiple visits to my family doctor as well as to the specialists who diagnosed ulnar nerve neuropathy in my left arm within one year post-operatively, a spine MRI was finally ordered in order to find an alternative explanation for the persistent neurological deficit.

The spine MRI turned out to be “a little more then we expected” as per the clinic staff who phoned to advise me of the results. In search of clarity, I went back to the orthopaedic surgeon and I watched Dr Done’s ego slip away as I came to discuss my new diagnosis of Chiari Malformation Type 1 and I knew, that it was bad. Although I still didn’t know how bad or understand why it’s bad, I watched his reaction to gauge how I should feel about it and I could literally feel my body leave the room from the anxiety and depression that was coming on about what it means that I don’t actually have an arm issue, I have a spine and brain issue!

Once the shock of the situation wore off, I once again found myself in front of another character who I am going to call Dr Miami, a local neurosurgeon who I was referred to after having post-op testing done. He was not a newbie, in fact he had been practicing for seventeen years as a neurosurgeon. I also found out that he was the head of the department at a local hospital through another doctor’s office who I was trying to get a second opinion from. Nevertheless, his experience only acted to reinforce his confidence in manipulating the system, in understanding that he has institutional protection and letting his personal ego cloud his judgement about the best interests of a patient. The reason he is called Dr Miami, is because he did his residence in Miami and his most distinctive character trait is that he regurgitates anecdotal arguments about the US healthcare system as facts and does not believe that there are talent and skill differences between doctors.

The above-mentioned then refers me to Dr Rhino, after having discovered that he and his colleagues missed a brain tumour, brain cancer, on my original pre-op MRI scans. He brags that he had hired Dr Rhino for her expertise and studies in Toronto where she got plenty of clinical practice, so to speak. My initial impression of Dr Rhino is that she looks exceptionally young and therefor is probably inexperienced. In our first meeting, she came off very cold and arrogant. I thought it was odd given that she was breaking the news to me that I have a rare cancerous brain tumour. But nevertheless, she went from behaving like an ego-maniac to seeming like she is scared of me by the time of our next appointment. She was literally taking huge pauses before speaking which were uncomfortable, avoiding eye contact, taking a lot of time to speak to the point that it was me ending the conversation, not the doctor, and otherwise odd behaviour given that I had never even spoken to her other then the first encounter on September 1, 2022 and then the second and last appointment on December 20, 2022. The only thing that happened in between these two appointments, is that I spoke to a lot of other doctors who clearly filled her in on my thoughts, my research, and my second opinions to the point that she knew she could not explain her way out of her former incompetence, it was just damage control at this point.

While all of this was going on, I had a doctor who was supportive. I cannot imagine that my mental health would have allowed me to go on if I had zero people who made me feel like they were on my side. This was the case with Dr Indubitably who, while not an expert in my disease and not a specialist, he did nevertheless let the situation play out by agreeing to do what I asked him to do. For instance, send letters asking for second opinions, send an out of country application, order diagnostic testing etc. Although he never specifically told me to write or do anything, I quickly learned that I had to do it myself and come with the paperwork pre-executed for him to sign if I wanted to get anything done. It was almost like I got coached to do, not to speak, just do. One must realize that at that time, I had just had brain surgery, then found out I also had a brain tumour, and that I may not make it because the brain tumour was in a tricky location. But instead of rolling up in a ball and crying, I had to deal with all of the above-mentioned as my family, as supportive as they were at times, also have English as a second language, and were suffering from their own depression while concerned with raising my child and dealing or coping with my medical crisis.    

I am so grateful to be alive, to have made it this far. But the struggle must not be in vein. There were lessons learned, a transformation, and all of that was part of this journey that marks the start of my life again. In the beginning, I was naive, trusting and undoubtedly had faith in the medical establishment as much as anybody in their 20s and 30s who had no serious or life-threatening health issues. However, when I realized that there were errors made in diagnosis, treatment and the ongoing offer to care was a death sentence, I began to think in terms of suspicious motives and cover-ups. I was paranoid, in a sense, that everything that was going on was happening to bury my story, and me, so that I would not tell the truth about them. Then this suspicion of motives finally transferred to acceptance, it is what it is. I cannot change what happened, maybe justice will not come about the way that I imagined it but that is ok because I am alive and I have to go on. I also acknowledge that I have circled back to many of the characters that I write about and have therefor overcome my paranoia and am able to maneuver the very system better as a result of my nightmare experience.

Jidda Krishnamurti, an Indian philosopher and spiritual leader, once said, “you cannot not go with your stream, you must go”. This reminds us, just how complicated our lives really are. There are many moving parts, obstacles, challenges, and an inevitable urge to be in control.

As much as I wish I could control the events and outcomes that transpired surrounding my health and even my life journey, a cancer diagnosis has taught me that control is a fleeting concept, a nuisance more then anything. I stopped thinking about how to manifest the life that I was dreaming of, and was only thinking how to move one foot in front of the other. Health changed everything for me revealing the fragility of existence and the fleeting nature of stability. It made me realize just how good I had it with little to no effort. I lived a carefree life without ever considering or presupposing that everything can change in a second; that the entire life that I was so accustomed to could just disappear.

Over the course of one year post-op, acceptance has allowed me to let go of the anger I was feeling, to embrace what I view as the next phase of my existence whole-heartedly and to process the events that transpired more rationally. I cannot say with any certainty that I totally get it or that I know everything that is going on with the healthcare system, that would be impossible. But certainly I have developed my view, my lived experience to inform the facts, all of which I hope will not die with me.

At times, and to certain people, my truth is going to be uncomfortable, cringeworthy even, but growth happens by acknowledging and doing justice to the facts, not sweeping them under the rug and hoping they disappear. Throughout the past two years, I have hit nothing but dead ends, road blocks and speed bumps in my journey but all of those ‘stops’ only propelled me forward even more because I know I’m onto something life-changing when there is this much friction and resistance coming my way.

Although the start of my healthcare journey was rather rough, the end has been a miracle. The team of doctors who treated me in Pittsburgh PA ultimately saved my life and gave me a second chance. They restored my hope in humanity, in medicine, in science and even in God. When you listen to several doctors talk about treatment they know nothing about-flip flopping, getting angry, getting frustrated at being questioned-a part of you starts to question whether you are even meant to be alive, being such a medical mystery and all. By contrast, you listen to a doctor who has a plan, a solution, and easy to follow logic backed by results grounded in excellence, it makes you want to live. I believed that he could do it, that he would succeed, that he would save me. And he did. There are differences in skills and talents of surgeons. As much as the Canadian healthcare system discourages doctor shopping, seeking treatment abroad, or even seeking it in another province, my story is a case in point that proves beyond the shadow of a doubt that surgeons like Dr Miami and Dr Rhino do not have either the expertise or the talent to carry out a treatment that lands me in the top one percent of difficulty in the world. They didn’t even take the time to figure out the statistical probability of how rare I am within the scope of medical practice. That is how fast things moved back in 2022 and it was not to their detriment but to mine, who absorbed the weight and stress of the situation.

When I look back to the time when I had to make a decision about doctors and treatments, I feel a sense of peace. The right decision was made. The life-saving treatment was obtained. My US doctor, although there was a team, but the head of the team is my hero. He delivered what he promised and I trusted him when he told me that I don’t need radiation post operatively. When everybody else was saying that the standard treatment for chordoma is incomplete unless you get radiation, my hero doctor told me that there are more risks then benefits to radiation in my case and that the cutting edge in chordoma is not to do radiation. Ultimately, I did not have proton beam radiation to my brain and I am over a year and a half cancer-free now having been spared from the harmful effects of said treatment. It is because of this decision, that I have been making amazing progress over the past year with physical and cognitive rehabilitation.

The term ‘trust your doctor’ has dual meanings to me. On the one hand, I had a disastrous experience with unprofessional and in my opinion, incompetent doctors, who let me down and I want to shed light to that fact so that other’s may be spared from that sort of hardship. On the other hand, I had a wonderful doctor in Pittsburgh who saved my life and I do trust him and his advice moving forward. There was never a doubt in my mind that I need to trust him in order to survive the predicament that I was in.

It is important to highlight that I am not playing favourites regarding doctors on either side of the border or trying to argue the merits of either the American or the Canadian healthcare system. My goal is to outline what happened, my interpretation of what happened, and the lessons learned as a result. Throughout my journey, I had come to some personal conclusions regarding how I think the situation could improve in Canada, for instance by introducing private healthcare to exist alongside the public system, but this analysis is just a side note suggestion. My mission is patient advocacy as opposed to political reform discussion. Unfortunately politics influence patient care, doctors, hospitals, and certainly the healthcare budget which is set by politicians as well. I would be remiss in claiming that politics are irrelevant but certainly that is not my domain of expertise.

In Canada, without much influence from market forces as seen in the U.S. capitalist healthcare system, the government plays a much larger role in healthcare budgeting. This shifts the primary pressures faced by hospitals and doctors from patient demands to the policies and expectations set by their governmental employer. The result is a healthcare environment driven more by government-imposed limits than by direct competition or consumer feedback, making resource allocation and service delivery highly dependent on political decisions.

In many of my encounters, I experienced how socialized healthcare can sometimes result in a lack of empathy, substandard care, and cost-saving measures like reduced diagnostic testing and rushed patient exams. Discussions about a doctor’s experience or skills were often discouraged. It felt as though the focus was more on efficiency than on patient-centered care. If there were a government slogan for Canadian healthcare, it might be: "Just follow the treatment plan and don’t ask questions," emphasizing compliance over dialogue.

I did exactly that, I just followed the treatment plan and didn’t ask questions with Dr Done, the orthopaedic surgeon who figured an ulnar nerve transposition surgery needed to be done on my left elbow in order to relieve the nerve pain that I was suffering for years. He acted sure, and I thought he wouldn’t behave sure if he wasn’t actually sure?! I was mistaken though. This factor is highly subjective and variable from person to person. Some act sure even when they are far from it.

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