A few years ago, my younger daughter loved a game called “Would You Rather.”
For those unfamiliar with this game, it’s pretty simple. You basically think of two equally awful things and try to choose the one with the best outcome. I’m not sure what the object of the game is. I guess it’s kind of a personality gauge — a way to open up conversation, or just have some morbid fun.
Here are two examples:
Would you rather lose your legs in a horrible accident or lose the ability to speak forever?
Would you rather jump off a bridge one hundred feet above water, or jump out of a second-story window onto the soft grass?
“Would You Rather” is a game of poor odds. Both choices are bad choices. It’s fun to play because the scenarios are typically outside the norm. You consider these worst-case-scenarios from a place of safety, trying to imagine the best of two terrible outcomes based on limited knowledge of what it would actually be like to, say, lose both legs versus the ability to speak.
But for my family, “Would You Rather” was a real game that we started playing immediately after my older daughter’s cancer diagnosis in 2012 and persisted until she died, nearly five years later, in March of 2017.
Rare, pediatric cancers present a multitude of equally hard choices. My daughter’s real-life game of “Would You Rather” went something like this.
Would you rather get chemotherapy to shrink the tumor on your liver (but it might not work) or get a liver transplant and be on anti-rejection medication for your entire life?
My daughter: “Give me the transplant.”
My husband and I: “Chemotherapy. Let’s save her liver!”
We went with the second choice which didn’t save her liver, but it did make her sicker. She lost her hair and had to have a liver transplant anyway. When the transplant didn’t stop her cancer from growing or spreading, we had more hard choices to make.
Would you rather get invasive surgery to remove multiple new tumors in your pelvis, or try a targeted new oral chemotherapy drug which hasn’t been approved for children, or your specific type of cancer?
My daughter: “Give me the targeted drug, assuming it doesn’t make me lose my hair.”
My husband and I: “Targeted drug!”
The targeted drug worked, but it turned her hair white and caused constant and sometimes debilitating stomach pain. Then it stopped working and we got to play the game again.
Would you rather get low dose chemotherapy to try and shrink the tumors in your lungs, abdomen and bowel, or do nothing and most certainly die? You may not lose your hair or you may not.
My daughter: “I’d rather die than lose my hair again.”
My husband and I: “Chemotherapy! It’s worth the risk of losing her hair if there’s a possibility of shrinking her tumors.”
Ana’s cancer was resistant to standard chemotherapy treatments and radiation. We honored her wishes to avoid low-dose chemotherapy and instead turned to surgery and a few more experimental treatments. Nothing worked. The cancer always returned.
There are no rule books for teenagers with cancer, no guidelines, no way for a teen to comprehend the repercussions of their medical decisions. Like most teenagers, Ana didn’t have a true sense of her own mortality. Unlike most teenagers, she had experienced debilitating illness and surgery, so she understood that she wasn’t invincible. Even so, she didn’t quite understand the cold, hard truth about walking away from treatment. At least, not until treatment wasn’t an option anymore.
Eventually, her cancer overtook all treatment options and her oncologist told us there was nothing more he could do.
Ana remained defiant, aloof, and contentious until her body began to fail her at the age of fifteen. She never made it to sixteen.
We played “Would You Rather” until the end of Ana’s life.
Would you rather die at home or in the hospital?
Would you rather take another opioid to alleviate your oxygen hunger and risk crippling constipation or crank up the oxygen tanks?
Would you rather I hold your hand or simply sit beside you?
The conversations I had with my daughter at the end of her life were so far removed from typical mother-daughter conversations that it was almost absurd.
She didn’t want me to hover over her. She wanted to be left alone. But instead of slamming her door and telling me to get the hell out of her space, she’d glared at me and said, “I don’t want you to stand over me when I die. Don’t hover.”
What could I say to that?
My conversations about drugs weren’t normal either. Instead of getting mad at her the time she confessed that she tried smoking pot, I’d asked in earnest, “Did it help you with your pain? Is it something you’d want to do again?”
These weren’t fictional scenarios. This was my life and it was absolutely unfathomable, except it happened. It was real.
Would you rather your child become addicted to oxycodone at 14, or have cancer and be grateful that oxycodone exists to relieve her intractable pain?
Would you rather stress over the cost of college and the success of your young adult or not give a shit about your kid’s grades because it’s doubtful she’ll live to finish high school?
Would you rather your 15-year-old was smart, talented and wise beyond her years — so wise that she tried to distance herself from you because she didn’t want her death to hurt you — or have a clueless teen who has no ambition at all?
I’ll take the clueless teen any day, the teen who will eventually grow up, grow out of their lack of ambition, get married, have kids, and outlive me.
Would you rather die a thousand times, living and reliving the horror of a painful disease so that your child could grow up healthy and unscathed, or watch your child die?
I wish I could die a thousand times. That’s all I’m saying.
We need to fund childhood cancer research. We need to talk about the hard parts of childhood cancer. We need to do something so that no one has to play the awful game of “Would You Rather” ever again.