When your life turns to chaos, keep making your bed. Maybe.

They said the pain was similar to that of giving birth. I wouldn’t know, but I do know that I have never rated any pain above a 6 or 7 in my life – and I’ve had my chest sawed open and sewn back together with wires.

It felt like someone had clamped something on the right side of my abdomen, and was twisting and pulling. After appendicitis was ruled out, I was positive that an alien was going to explode out of my stomach. I was on a stretcher in the hallway in the emergency room on January 2nd, crying because morphine wasn’t enough to numb the pain or put me to sleep. After 24 hours, a bed was found for me and I was admitted to the hospital for tests. Happy new year to me. I was wheeled around to scans, which I cannot remember because thank you pain killers. I saw my heart transplant doctor and various doctors from gastroenterology, hepatology, gynecology, to urology.

On day 3 (I think), Dr. Ross (the heart transplant doctor) sat beside my bed. I had first met her when I was 18, in January 2008, after I had dropped out of my first year of university, and moved into the hospital. In a small examination room, packed with my parents and maybe 2 residents/students, she had pulled a chair up to face me, looked me in the eyes and said, “there’s a 15% chance you will die within the year without a heart transplant.” (That number may be inaccurate, that part of my life is partially a black hole). In January 2017, Dr. Ross sat beside my bed looking in my eyes, again.

“Remember that mass we noticed on your kidney in December that we were going to check out around now?” I didn’t. I could barely concentrate or keep my eyes open. “It’s grown a centimeter in the past two weeks And it’s pressing on your ureter. According to urology, this can be quite painful.”

Immediately she set to work trying to contact the best urologists she knew to discuss how to get a piece of tissue and figure out what it was. The fear was that it was a recurrence of Wilm’s Tumour. But the pain was subsiding, and I was starting to feel good again. In the efforts to choose our course of action, a scan showed that it was starting to return to the size it was when we first noticed it in December. The doctors determined that whatever it was had bled, which is what made it appear to grow so drastically in such a short period of time, and caused such an acute onset of pain.  

After I had a biopsy, I finally ate. I went 6 days without eating because of the pain and vomiting, and I LOVE EATING. I was released from the hospital with a diagnosis of Wilm’s Tumour recurrence, even though a radiologist from Sick Kids had actually ruled that out. I went home to wait, thinking that I would return to work and return to the excitement that 2017 was going to be. But there was a constant frown that I felt at the base of the back of my head. The excitement had disappeared in anticipation of the results. I went to work and I went home each day, hiding from having to reveal what was happening because I couldn’t handle questions or discussing the unknown.

On January 12th, I sat in another small examination room. My urologist came in casually, and we all smiled at each other. He had been so kind and patient with us.

“It is malignant. I’m sorry to be the one to tell you this. Our treatment option is surgery.” (His opening was less robotic than this, but I can only remember it as a sequence of facts).

“So no chemo?”

“No chemo.” Gratitude. I can handle being cut open and scars. I do not want to feel sick. All I wanted for 4 years of my life was a better quality of life, and for the past 6 years I have had nothing but. There are a few possible outcomes of the surgery, which you can read about in a forthcoming episode of Maya Explains Science. No matter the outcome, I will return to a good quality of life. 

My immediate instinct was to run. Get away while I still could, before I’m chained to machines. Unfortunately, you can’t actually run from your problems when they are literally a physical part of you (or ever, apparently). But my parents and I booked a trip to Key West anyways to pretend that nothing was real for the next weekend.

After planning The Great Escape we had to spread the news. Turns out, telling everyone that I care about was more painful than hearing the diagnosis myself. Firstly, every time I told someone it reinforced the fact that it was true, which I didn’t believe. Maybe I still don’t.

It was hard to tell people without crying, which I just find so exhausting. And then there are all the people that need to know that I don’t see or speak to every day. I made one phone call, shocking my friend, with my voice cracking the whole time. Thanks, friend, for being the test phone call and a lesson to me that I couldn’t do that repeatedly. There was also the anticipation of telling people I love bad news that made it feel like I was about to break up with each of my friends.

I am extremely grateful for the extent of the support I have received, and peoples’ infallible belief that despite the uncertainty of the outcomes I will be okay. And doing so without writing me off or ignoring my feelings. I have the best people in my life.

I am unsure of the tears. Are they sadness, fear, uncertainty? Is it just that there’s such a weight to the diagnosis of cancer that I experience this sadness with it? There’s the acute aspect where we need to treat the existing thing in my body, but that will be done with and I’ll be fine and recover and I’ll show off the new scars on my body. The heavier part is that cancer is a long term diagnosis. It’s a 5 year long wait once I reach remission before I can consider myself ‘cured’, and throughout those 5 years and beyond there is the constant fear of spread, and that it’s not all out of my body. And the fear of other cancers, because clearly my cells are supercells and just want to multiply. At this point, how can I believe I’m ever in the clear?

Then again, the pain has mostly dissipated, and lying on the beach by the ocean, under a hot sun I really thought I had meditated the thing away. Without constant symptoms, it’s easy to forget that there’s something wrong happening inside your body, and it makes it harder to accept and be real. It takes time after waking up, and my brain starts running, before the word cancer pops into my mind and I remember. I will be making my bed, which only happens occasionally, and I’ll remember I have cancer. Why am I making my bed? There’s no point to it, even when you don’t have cancer.

Sometimes I feel sad…that my future is undetermined, that my future may not be a real thing, that things have to go on hold, and that plans I haven’t even made can’t be planned. Yet again, I may be watching others live life while I’m spinning in the same spot, chained to a wall.

But no matter what, there are some thing I can do: keep making my bed, maybe. keep spinning, because it’s dancing and once I stop, time stops. and keep on keeping on, because if I don’t then there’s really no point. So most of the time, I’m still excited about the potential that is the future.

Thank you for joining me on this tour of my mind. Stay tuned for future tours. And I’ll leave you with this: