In waiting for No Evidence of Disease, Ana Reyes says cancer survivorship is much like a board game—full of false starts, great luck and a lot of waiting.
A very dear friend of mine wrote a blog post about living life as the mother of a child with leukemia. She likened it to playing Jenga—how she built her tower up, but things like fevers, ER trips and colds would remove blocks, weakening her tower until so many blocks were gone that the Jenga tower that is her life would come crashing down. All she could do at that point was slowly and carefully start rebuilding the tower.
I started thinking about my life as a cancer survivor and it isn’t quite the same as a Jenga tower. Instead, my life feels like Sorry, the board game.
Starting the Game
Everyone playing Sorry places their pieces in the Start Circle. This is a holding pen of sorts. Before you can remove your piece from the circle and begin, you must draw a one or a two from the deck of cards. You never know when they will pop up. It could be on your first turn or it could be on your 18th turn. You just have to wait. There is nothing you can do to start playing the game until you draw one of those cards.
This is how receiving the No Evidence of Disease (NED) prognosis from your oncologist feels. You never know when it will come. Will it be on your first post-treatment check? Will it take weeks or months or years? Will it ever come? Until you hear that news, you are left waiting in the holding pen.
Moving Around the Board
Once you’re out of the holding pen, you can start playing by drawing cards to move around the board. Each card has a different number on it. You may draw a three. You may draw a 12. You can even draw cards that instruct you to move backwards. The goal is to move as quickly as possible to the “Safety Zone” where no one can send you back to the beginning again. Drawing cards, you move—sometimes slowly, sometimes quickly and sometimes backwards
The parallels to survivorship are evident. I am always trying to move forward. I am always making progress in getting back to the way things were before my diagnosis. Going back to work full time and making it through the entire school year? Move forward 10. Attending social events with friends? Move forward seven. A weird pain and an abnormal test result? Move backward four and then backward again. Is the pain nothing and easily treatable? Move forward one.
It is a constant back and forth. The goal is always forward motion. Sometimes, I move more quickly than others and sometimes others pass me by. Sometimes, it is a slow and steady movement. Other times, I am knocked backward by anxiety or side effects or less-than-desirable test results. But even then, I can look back to see how far I have come on the game board.
When drawing cards from the deck, there are even a few cards that have no numbers on them at all. No forward or backward movement. The cards simply read “SORRY.” When you draw a ”SORRY,” you go back to Start, back to the holding pen. You must wait again to draw a one or two to begin your movement around the board.
You never know when a ”SORRY” will appear, and you don’t know how many you will draw in a single game. Maybe you will draw none. Maybe you will draw many. But the “SORRY” card will always knock you out of the game and back to the beginning while others move on, steadily pushing forward on the board.
“SORRY” is the dreaded recurrence. It lingers—always a possibility, but not a given. You worry about it. You wonder if and when it will pop up. You hope it won’t. It won’t matter how far you have come on the board, or in life.
If you pull the “SORRY” card you are immediately sent back. You hope that if you do get it, you will quickly pull a card to get you back in the game, that the ”SORRY” card won’t put you behind for very long. You see others pull “SORRY” and even though you feel awful that it happened to them, you can’t help but feel a little relief that it wasn’t you. The worry about that card—about recurrence—is always a part of the game and a part of being a survivor. It lurks throughout your survivorship, sometimes more than others, but it is always there, no matter how far along the board you get.
The Safety Zone
Once you have moved all the way around the board, you enter The Safety Zone. Now, you can’t get sent back to Start anymore and a “SORRY” only means you move backward a few squares. You will not have to go back to the beginning.
I hope that the Safety Zone is similar to the glorious, exclusive five-year NED mark. At this mark, statistics for recurrence of all cancers go down significantly. For some cancers, your risk goes down to what it was prior to even having had cancer.
I am sure that at the five-year mark, survivors still worry about the “SORRY” card. It doesn’t just go away completely and it can still cause trouble. But it causes less trouble. And I imagine this is what the five-year mark will be for me. I will never be completely safe. I will never stop worrying about recurrence. I know too much now. I know too many people who have had their lives cut too short. But at five years NED, I will have made it into my own Safety Zone.