I remember the night I realized that I was going to die. I was nine years old.
I have been an insomniac my entire life. The whole concept of a bedtime never made sense to me. When I would lay my head down on my pillow at night, instead of drifting off to sleep like most carefree children, I would think for hours upon hours about everything—letting my mind wander to wherever it pleased. I just couldn’t shut my mind off. I had always been an avid reader with trips to the library with my mother being a weekly ritual. I would lose myself in the pages of my books accepting the worlds they offered to me and entering into them gladly. I found myself entirely at peace there, never wanting to leave. My mom, knowing I could not sleep as much as I tried to every night, instilled a new bedtime rule: I had to be in bed at 8:30, but I was allowed to stay up as late as I wanted as long as I was reading. That was the coolest thing ever, I thought. And so it began.
I kept this reading lamp attached to my bed. It was pink and I had it until college until it burned off the nose of my favorite stuffed animal, Ross, and then I retired it. But, underneath that lamp, reading through whatever book I had opened that week, I felt the most comfortable.
One night, during my nightly reading period, I ran into a boy losing his mother in one of my books. She died in a car accident and I remember being completely jolted. Now, I was nine years old so it was not like I had never encountered the concept of death before. People died, animals died, plants died. In the abstract I got it. And when my pet hamster died, I experienced it. But for some reason, this time I allowed my mind to wander for just a little bit too long and realized that one day, I too will die.
I hurried out of my room and ran up the stairs to my parents’ bedroom. This, too, had become a nightly ritual. Now, as though insomnia was not bad enough, often, when I was finally able to drift off to sleep, I would have nightmares and be shaken awake by my own tears and screams. I would rush to my parents’ room and shake my mom awake, telling her about the most recent trauma I had come across in my dreams. She would tell me it was all OK and coax me back down to my room, or at least to the foot of my parents’ bed where I often found myself in the morning when my dad would almost annihilate me by tromping on me. He was, and still is, a heavy sleeper and quite often he would not have even heard my nightly visit and would only realize it had taken place when he nearly stepped on me the next day.
This night, the night I realized death was real, however, was different. Instead of going to my mom, I went straight to my dad’s side of the bed. This was a serious matter and I needed my father. I generally shook my mother awake after my nightmares because she was honestly the easier one of the two to wake. I was practical at nine years old and my dad was a heavy sleeper and no matter how gently I tried to wake him, he usually did not take it very well. It was much like you would feel if you tried to ease a bear out of hibernation, they have been in such a deep slumber that things just don’t go well when they arise. Regardless, I needed to discuss death and I needed to discuss it now. So I woke my father. At first I remember he was flustered and confused, but he saw my face red and puffy from the tears and I was pretty adorable as a kid, so I saw his face quickly soften with understanding and love. “Dad,” I said. “I am going to die.”
Dad and I had often had tough conversations. My fascination with God, and the beginning of the universe, were often things I needed to discuss. When did the universe begin? And before that what was there? We would talk for hours and sometimes satisfy my hunger for the unknown, but often would have to just move on and hope I would shut up or become distracted. Tonight was no such night. I needed answers.
My dad asked me for more information and I explained that I just realized that, in fact, I am going to die one day and it terrified me. I had practical concerns like I didn’t want bugs to crawl through me if I am buried and how am I going to get to heaven if I am just a bunch of bones? And furthermore I just didn’t want to die. Ever. Most of us don’t.
We discussed my concerns and I expressed my desire to be put on ice if I did have to die. He said that he was sure technology would advance and that would become a viable option. And then he said what comforted me the most when I said I was going to die, “Yes, but you won’t for a very, very long time.” I looked at him and took solace in these words. That helps. If I do have to die, which I still don’t want to, it would not be for a very, very long time. So, I can live with that.
A few days after I was diagnosed with cancer I recalled this conversation with my dad almost twenty years prior. I had obviously crept forward in the timeline of my life so perhaps I wasn’t going to die for a “very long time” instead of a “very, very long time.” But still, I was young. Didn’t I have more time? It was like I was nine years old again being shaken awake by the reality of death. It happens. To all of us. So now what?
Cancer has a way of showing us that we need more than just some time. Time is just time. We all need something more fulfilling than that.
With a breast cancer diagnosis, it is not all over when your oncologist calls you with news that you are cancer-free after battling the disease for months or years. You then enter this “watch and wait” period where you literally hold your breath, just praying the cancer won’t return. My breast cancer type was “triple negative.” Whenever I tell another breast cancer survivor this fact their eyes get wide and there is visible concern in their eyes because they know that is a bad one. Yes, they are all bad, but triple negative breast cancer has the unfortunate reputation of being extremely aggressive—extremely bad. As if that news is not bad enough, there are no post-treatment medications that most other breast cancer survivors stay on for several years to decrease the chance of recurrence. So I have no “safety net” so-to-speak. My oncologist just waved goodbye and shoved me out into the real world.
I have already had a significant scare since my treatment ended. A few months ago I had severe pain in my upper back. It didn’t go away for months and I started to worry. I told my oncologist about the pain and we waited it out for a few more weeks, but the pain was just not going away. Finally, my oncologist told me it would be useful to get an MRI. And then he said it, “to rule out metastasis.” Metastasis is my least favorite word. I hate it more than cancer. I hate it more than asparagus. I hate it. So then, of course, my mind goes to worst case scenarios and I start trying to comfort myself but have no success because I am scared out of my mind. Luckily, the scans came back clear and I moved on slowly and carefully with my nerves eased a tad.
The fear boils down to the extreme level of uncertainty one struggles with every day. I can have a pain in my back and it could be a muscle pull or it could be that my cancer has returned. Or I could feel tired one day and it could be that I stayed up too late reading the night before or the cancer has returned. One just never knows. Words fail to truly express how tough that can be on a person’s psyche. The other day I was looking at myself in the mirror and checking out my hair growth and a thought shot through my head, “I hope I don’t die before I can grow my hair back out to ‘ponytail’ length.” It is unfortunate that my thoughts go there, but having spoken to breast cancer survivor friends of mine I have found that these thoughts, and living with this degree of fear, is very normal.
I feel like I was good at fighting cancer. I wore the pink wig, I rocked the bald head, I joked about my crazy perky boobs, I made lifelong friends with my healthcare providers. I was a cancer cheerleader in every essence of that concept. I fear, however, that I am failing at this whole survivorship thing. Survivor friends of mine assure me that it just takes time, but how much time?
There we go again. Time. I want more than that.
If I were told tomorrow that my time is being cut short, I would want my story to have helped someone. I would want someone going down a tough road to have found comfort in the words I have written in this blog during my war with cancer. Sometimes I feel as though I have fallen short when some of the closest people to me have come out on the other side of this experience not remotely understanding what I have been through and what I still deal with every minute. I feel this heavy burden to help those going through this journey, but sometimes I fail myself when I succumb to the fear that is cancer and its aftermath. I want to see my nephew grow up and get married. I want to see my niece grow up and become a stand-up comedian, which I have determined is the road she is heading down. But I guess, before any of that happens, I just want them and those close to me to know I love them and I find comfort knowing, without a doubt, that they do.
At the end of the day, I understand that all our days are numbered. When I was first diagnosed with cancer, I often got the comforting words that yes, cancer sucks and you can die from it, but hey, “you could step outside tomorrow and be hit by a bus!!!” Oh, ok! Then what am I stressing for? But there is one thing I know for sure, that if I have one day left on this earth or 90 years, I want to surround myself with those people I hold dear and make sure they know I love them. Because time is just time, but spending it experiencing that ever-precious time with those you love—that is when you are truly living.