i am not the word

What is your worst nightmare?

Mine became a reality the day I was diagnosed with cancer.

I remember the morning I went to the hospital like a vivid blur; yes that makes sense, at least to me it does. I was sitting on the couch, finishing my coffee, while Nick was upstairs doing his morning yoga. The pain in my chest had been getting progressively worse. With moments of reprieve here and there, for the most part I could barely get up off the couch without tremendous pain. I would hold my chest and find the easiest way to get up. Basically just picture someone who is nine months pregnant trying to get up off the couch, except instead of holding my belly, I was holding my chest.

As I got up off the couch to go put my coffee cup in the kitchen, I looked at my dogs and knew I couldn’t keep hoping this pain would go away. I knew, because they knew. Dogs are wild man. They definitely sensed something was wrong with me, they would cuddle me closer when I had really painful days. Phoebe, more so than Chewie, was the best companion for painful days. She would snuggle into my left ribcage.

So I knew that I needed to do something. This couldn’t just be costochondritis, like the walk in clinic doctor had told me it was. I am not one for questioning doctors, honestly I am usually pretty trusting of them. Not blindly, but I mean they are the experts for a reason. Can they be wrong? Sure. But I was sure they knew more than me, and that is usually enough for me. But deep down I knew I needed to seek a second opinion, cause I couldn’t live with the pain anymore. Even if I was just going to hear the same thing from another doctor, I knew that I needed that confirmation.

I struggled with every step, but I made it upstairs to the bedroom to interrupt Nick’s yoga session. I just looked at him, pain in my eyes and told him I needed to go the hospital. He didn’t question me, he stopped what he was doing, and put the dogs in the backyard while I got us an Uber. Usually we met our Uber at the front gate, but I could barely move so I waited at the house door as Nick told security to let them in, and then he went to open the second gate for the car to come all the way to where I was. And then Nick had to help me into the car.

Now this is November 2020, pandemic was raging. We had masks on. There was hand sanitizer for us to use. I was panicking about being in a car with a stranger. It was all a lot to deal with, in the midst of also being in pain and needing to get to the hospital.

As we arrived at the hospital, it wasn’t as easy as going to the ER and all that. First off all, pandemic. We had to go through a screening to answer questions about symptoms. Thankfully the symptoms I was feeling were not related to COVID, so we were able to enter without any issue or hold up.

This is where everything becomes a bit of a blur to me. I told Nick that I want to write out what I remember and check it against his memory, as he was the one navigating everything from here, and likely can recall more of the events better. But the reality is, it was traumatic for him too. His memory has a lot of holes in it too. I want to try to paint a picture of what I remember, and what I can piece together reading texts to my parents, sister and my best friends.

I don’t remember anything about how I got from the door of the hospital to the first bed. I remember being surrounded by white. White walls. White sheets. White curtain separating the beds. I remember lying in pain on the bed, while people came in and out. You know in shows when people are still, but everything around them moves around with the speed amped up on high. The rest of the world was a time-lapse video, and I was just a still photo. I remember hearing Nick attempt to explain what I was going through in Spanish, being thankful that he knew any Spanish at all to be able to. I remember a woman, not a nurse or a doctor, who did speak English. But I honestly can’t recall what she helped with, if anything. I remember answering questions, but not what those questions were. I recall tests being done, but not which tests were done from there. Looking at texts, and discussing with Nick, this is when blood tests were done.

Before I knew it, they were taking me to my own hospital room. This was clearly not a good sign. It was COVID times, in the thick of it, and many people were being denied access to their loved ones in hospitals, but they allowed Nick into my room. I have no idea why they allowed him to stay by my side, maybe because he spoke enough Spanish and I did not. And I am forever grateful, as I could not have endured all of that alone, regardless of the language barrier.

It was a Tuesday. Being put into my own room that day, it was obvious that I wasn’t leaving any time soon. Thankfully with virtual learning, it was an asynchronous day for both of us, which meant we didn’t need to be on camera with students. But we were barely able to be available through email either. Nick got word to our school what was happening, and made arrangements with them to figure out our classes while we were in the hospital. Between our admin, HR and the school doctor, they came by often to help with figuring out insurance, any translating, and one person even would drop off food for Nick, since the hospital was giving me meals but nothing for him.

As I lay in my hospital bed, in the private room I was put in, I remember Nick not wanting to leave my side, but also needing to go home to feed our dogs and check on them. And also get himself food. I remember the internal struggle he felt with the idea of even stepping out of the room for a moment, let alone walking home to do that. We didn’t even know what was wrong yet, but he knew he didn’t want to have to leave me alone. But he knew he had to, so he would walk home (20 minutes or so) and take care of the dogs.

The only thing I remember from that first day, when he was gone, was staring at the wall in front of me for a long time. I do not recall much else without help, but reading through messages sparked the memory of one of the doctors coming in. She didn’t speak much English, I didn’t speak any Spanish, and all I got out of her was that there was something wrong with my blood. I wasn’t sure what that meant exactly.

There are so many details that are lost to me. I don’t think my memory is chronological, but using texts from those few days helped me to piece it all together. I know what days I was there. I have memories of bits and pieces of it, but by no means can I recall what order things happened in or be able to recite the words said to me.

After being given a private room, there were X-Rays, CT Scans, ultrasound, echocardiogram, etc. on that first day. The CT scan showed no inflammation, ruling out that costochondritis diagnosis I had gotten from the clinic previously.

As soon as the other doctor, Dr. Di Stefano, one who spoke much more English, walked into the room, and his jacket read ‘Oncologist/Hematologist’, I knew things were not looking good. But honestly, even in the moment that I read his jacket, I never believed that it could be cancer. I was scared, terrified really, but no one wants to believe that they are going to be told they have cancer. Even when it was obvious that is where things were heading. There was so much blind denial.

Nick was allowed to stay with me in the hospital, which again, it was COVID times and this was not normal. But that man spent every night, sleeping on the couch in the room. He held my hand for every test, for every word spoken to me by a doctor. He never left me alone, and never let me know how hard everything was on him.

That night, when I thought I had been through all the tests for the day, Dr. Di Stefano came back to my room. He said he wanted to get a bone marrow sample. To anyone who has ever had a bone marrow biopsy done, you know that the pain is an excruciating one that is hard to compare to anything else. I was so tired, in so much pain, also on pain meds, that the only thing I really remember was that they wanted Nick to leave the room because it is not something pleasant to watch and they didn’t want to have to worry about him passing out or anything. But ultimately they allowed him to stay, but promise not to look. So he held my hand as tight as he could, and stayed by my side.

I spent the next day in the hospital sleeping a lot. I had a hard time sleeping at night. As you can imagine, having a bone marrow biopsy can get your head spinning. But I was exhausted. The pain was terrible, they had me on fentanyl to try to help. I couldn’t keep down any food. It didn’t help that I was vegan and attempting to eat the meat they were providing. I also got work done, which now in retrospect seems ridiculous. I can’t believe I worried about work while in the hospital, but alas, sometimes in the moment, you think it will help get your mind off things, or you are worried about it. I wanted to make sure there was work for my students to do while I was not able to go on camera and be present. That second day in the hospital was pretty uneventful for the most part.

Except the moment Nick cried, that broke me. He was just as terrified as I was, and all he wanted was to be by my side and support me. But he left twice a day to take care of the dogs, and feed himself. Thankfully, living somewhere with beautiful spring weather all the time, leaving the dogs in the backyard all day was perfectly fine for them. Knowing they were fine helped.

The next day, Dr. Di Stefano came into my room. It was Thursday, November 26, 2020. It was American Thanksgiving weekend. We had plans that weekend to join friends for a ‘friends giving’. I was going to try to make a vegan pumpkin pie. I was really excited. But that didn’t happen.

If you asked me to recite the words that came out of the doctor’s mouth, I wouldn’t be able to. The only words I can be sure were said were ‘multiple myeloma’. I had never heard of it. But coming from the oncologist’s mouth, I knew it was a form of cancer. I vaguely remember him discussing a word, that I can’t recall now, but Nick and I googled it later and it meant something related to blood illnesses.

I held Nick’s hand tight, I don’t even remember crying in the moment, I think I was in shock. He said we both had tears forming, but that the breakdown happened a little later when it all sunk in. There were also many people in the room, it is a training hospital and there were students observing it all. It also just all felt surreal. No one believes they are ever going to hear the worst thing you could ever hear.

He also said that I had a decision to make. That I could do chemotherapy there, and treatment was available for me. Or I can choose to go back to Canada. But he assured me that treatment would not differ between the countries, and I did not HAVE to leave, and it was entirely up to me. He also mentioned that he did not give me me a diagnosis until he got a second opinion by colleagues in Spain, which I appreciated.

I honestly do not remember anything after that. Even reading messages and talking to Nick, everything that happened is a blur. But everything I felt, I still hold that sadness deep inside me. The pain I came into the hospital turned from physical to emotional, I felt it in my entire being.

As some point, my school was informed of my diagnosis. We honestly can’t recall how. But Nick went out of the room to talk to my doctor a little later, and my admin, HR and school doctor were out in the hall. Nick’s memory of this boils down to when the doctor said that the key was to stay positive. He told Nick that the people who believe they will make it, make it. The people who don’t, don’t. And that Nick needed to be positive to keep me positive. He told him that I can’t see him like this… Nick was a mess of tears, and had broken down outside that room. I had no idea.

During this time, I messaged my best friends, my parents and my sister to tell them the news. This is never the kind of news you want to relay to your parents, your family, especially by text. But I was a mess. An emotional mess. And I just did not have it in me to speak on the phone or FaceTime, and I knew I needed to tell them ASAP so they weren’t left wondering. The unknown is a terrible place to be. As hard as hearing you have cancer is, the moments between tests and results suck the life out of you. I didn’t want to keep my family in the dark. And so I messaged them to let them know.

I decided to post about my diagnosis on social media. I have always been a sharer. Mostly cause I love to write, but also cause I am just an open book. Life isn’t always a a fairytale. Social media can be a constant highlight reel, but I choose to make it as real as I can.

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After diagnosis, I wasn’t just able to leave. In fact I didn’t leave until Monday morning. I had X-Rays done, which helped to show the extent of the bone lesions. Bone lesions in my ribs are what started the pain that lead me to the hospital in the first place. Some people end up with broken bones, and that is how they end up there. I didn’t get to that point. I also had to have a blood transfusion. I had never had one before. It made me appreciate people who donate blood so much, and think of all the people I know who do!

In this time, I had made the decision to stay in Ecuador for chemo. I did not want to uproot my life that I just started there. I did not want to choose to go back to Canada, though many people made many comments to me that were very xenophobic. The assumption by many was that I would do just that, because obviously Canada is better right? Wrong. In Ecuador, I was able to get into chemo within days of discharge from the hospital. In Canada, things would have been much slower. I was lucky that I had health insurance from my school. Up to $100k per year. Which sounds like a lot until you realize chemo alone costs $3.8k every time. But I was covered, and had enough.

I made that decision for me, and in the end, I do not regret that. It allowed me to continue living my life the way I wanted to. It helped keep me sane.

And so Monday morning, I left the hospital. My school doctor came and picked us up and drove us home. And I would begin my treatment on Wednesday. Treatment is a story for another day.

Timeline:

Entered hospital on a Tuesday.

Diagnosed by Thursday.

Left hospital on Monday.

In chemo by Wednesday.

Reading other people’s experiences, mine does not seem to be a common timeline. I am forever grateful to my doctors. My school. My family and friends. But mostly to Nick, who was there with me, every step of the way, and has been since.