Once upon a time, I was diagnosed with cancer. I had a wonderful support system, my treatments were easy on me, and I went right back to my normal life after treatment ended. Oh, and I looked fabulous bald! The End.
Just kidding. The real story is less of a fairy tale and more of a comedic tragedy.
It is incredible to watch how cancer is portrayed in the media. Unfortunately, these Cinderella storylines inform most of society’s views on cancer patients. I promise I am not trying to be the evil stepmother, but I am here to tell you the truth. There’s no glass slipper and you most definitely turn back into a pumpkin as soon as your oncologist says, “see you in three months!”
I was first diagnosed with Hodgkin’s lymphoma in 2018. At the time I was working forty plus hours a week, I was a mom, and the last thing I had time for was being sick. I believe I actually uttered those words at one point. Plot twist! Cancer made sure I had time for nothing but being sick. As a part of my coping strategy, I convinced myself that cancer would be nothing but a blip in my story. An interesting tale to share with the grandkids one day, because we all know the hero always survives. Right? Right . . .?
Sorry, but that is bibbidi-bobbidi-bullshit. My cancer relapsed shortly after treatment ended, while I was in the middle of playing the part of the “brave, strong, and well-adjusted” cancer survivor. I returned to work, and everyone admired how well I was handling everything. Privately, I was not handling anything but depression and anxiety. When my cancer returned it was like a bomb went off. I was angry. I was told by everyone (myself included) that this chapter had ended. The reality was cancer had inserted me inside a whole new book and I was drowning in it.
In 2020, I underwent a stem cell transplant which “knock on wood” worked and I was declared no evidence of disease (NED). I swiftly transitioned from my identity as a cancer patient to a survivor. I had never spent significant time in the land of survivorship, but I could sense that it was different. I was different. Optimism for a return to my life was replaced with grief for Her. Her being the girl I used to be. The life I used to have. It was gone. She was gone. How do you explain to people that you are grieving your own death while you’re still alive?
As soon as I was declared NED, I felt an immense sense of “WTF do I do now!?” I refused to pretend everything was OK this time. I needed to be authentic to myself and my experience. A fact that I quickly realized was contrary to what society wants and expects from cancer survivors. Society wants the happy ending (hey, so do I).
I would compare my survivorship to “The Upside Down” world from Stranger Things. Everything looks similar, but at the same time, nothing is quite right. Things have a sinister glow, and someone (cancer) is always watching. I am no longer able to relax. I am no longer able to plan for a future. In many ways, I am no longer able to exist in this world. I often feel like a ghost now. I have even described survivorship as living in a sort of simulation. I am pretty sure I survived, I am alive, but there’s always a chance this is a dream. Maybe I’m like Princess Aurora from Sleeping Beauty, just waiting for a kiss to awaken me from this eternal slumber.
When things are so out of control it can be shocking how much your eyes are opened. What was important to me was crystal clear and everything else was unimportant. That included a career that did not make me happy, so I decided to walk away from it. This was just as liberating as Pinocchio having his strings cut off. I felt a sense of freedom to just exist. Honestly, I did not want to do anything, yet I wanted to do everything at the same time. I am so grateful for my husband who was so supportive to me. He was OK if I needed to sit on the couch watching the Price Is Right for the next year or if I wanted to do something crazy like start a business. Which is exactly what I did. (A little Price Is Right and a little small business).
Totally normal right. . .?
In conjunction with my business, I began sharing my cancer experience more publicly online through art. My real cancer experience, which was far from the one the movies portray. I was nervous to be so vulnerable online because I wasn’t sure what people would think. I was so used to the toxic positivity and empty platitudes that had followed me since I was diagnosed. However, the response that I received online was incredible and so much more than I could have imagined. I found my people. I found my community. I was finally being “seen.” I heard so many stories from my cancer friends that echoed my own experiences. They helped me understand that what I lived was normal. (Well, normal for the cancer world, that is.) I never want anyone to feel as lonely as I did throughout cancer. This is why I decided to keep talking. To keep sharing. To be honest even when it hurts.
I told you this wasn’t a fairy tale, so of course sharing your cancer story online isn’t always sunshine and rainbows. In fact, I have had people outside of the cancer space contact me and tell me they “hate” what I am doing. I was told I should be grateful when someone says, “Let me know if you need anything.” I was told to shrink down and shut up. I refuse. I am not a brave, strong, and inspirational role model for you to put on a billboard. I’m a lost, confused, and dark humor-filled human. A human who is trying to hold a candle for other lost souls and make cancer suck a little less.
Existing online in the cancer space and connecting with cancer friends has been a priceless experience, but it has also been a punch in the gut on more than one occasion. I am talking about survivor’s guilt. I have lost so many cancer friends over the past two years that it’s hard to keep track. All these friends show up like ghosts now on my “friends list” because I can’t bring myself to “unfriend” them. We never stopped being friends. Cancer stole them. A few weeks ago, I lost one of the first cancer friends I made through social media. I went back to read our last messages; hungry for a way to feel their presence again. One of the last messages they sent me said, “When I die, I want to put your Instagram in my obituary so my family can read it and finally know how I really felt.”
Gut. Punch. I was heartbroken for my friend. They never got to be authentic in their experience. They had to pretend. This needs to change and I feel a responsibility to be a part of changing it. This responsibility, desire, need—whatever it may be is the basis for the next chapter in my tale. I know it may involve slaying some dragons, some poison apples, and even a troll or two, but it will be worth it. It is worth it.
This isn’t the end. It’s only the beginning.