“Isn’t she supposed to be dead by now?”
I fear those words may be whispered behind my back as I go out in public.
It’s true. I couldn't blame the whisperers. I was supposed to be dead. I thought I would be by now too.
So why am I not when so many others are?
I don’t know, and that leaves me confused, with no data to steady myself. There is no clean answer.
How long do you have to survive past the posted prognosis before you become afflicted with Survivor’s Guilt? For one thing, you have to start to believe you might survive, and for me, that time is now.
In a funny way, it’s embarrassing to still be alive. I snap at people in anger, I’m bored, annoyed - I’m back to normal. I’m not living a beatific, grateful, Oprah-inspired life. People think somebody who has been through a trauma and lived through it should be Zen-like, but I roll my eyes, than feel guilty. I’m living an ordinary, messy existence. I don’t behave like a woman who is staring death in the face. I plan for the future, a year out, two years. I don't think twice making airline reservations. I no longer believe I’ll die any sooner than anybody else; I don't live in three month increments anymore. (I only get a routine scan yearly, a symptom has to appear for me to earn time in a machine.). I go to my oncology treatment every three weeks routinely now, like a rich women would do with her dermatologist. Just part of the schedule. My husband and I just had a conversation about our Christmas tree next year. A year ago, I wouldn't have discussed something that far off.
Is this all denial? Possibly.
In truth, you cannot keep up the fervor of living in a terminal state year after year, even if the menace has not passed. Eventually, the danger feels less immediate and you return to your normal self, and then think of all the people who never had that chance. You feel guilty that you grump about the rain when other people don't get to, and a drop hits you and you grump again.
Survivor's Guilt is classified in the DSM IV is a “mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.”
That’s not quite right though. I don’t believe I did anything wrong in surviving – in fact, people with my same disease now look at me with hope that they can do it too. That’s a good thing. I don’t think anybody else would think I've done anything wrong, even the dead people, not that they wouldn't have wanted to be alive too. More accurate is my belief that others deserved to live more than I did. Better people than me are now gone; people who were funnier, who were kinder, who had more to give, and I’m still trudging along, bitching about how cold I am and slamming pain meds for my aches and pains. It is not fair, and I know it. Certainly, nobody could argue that a child whose life had barely started should have been allowed to live over me. I like to think I would have traded, taken on the suffering and death of a child so that he may live. But you don’t get to do that, so my noblesse oblige is meaningless, perhaps even a lie, pedal never put to the metal.
Mixed into the soupy cloud of guilt is also the thought of a broken promise. I played the metastatic cancer card often in the early days. Not like a gambler, calculating odds and trying to determine outcome, but like a new mother. She’s so in love with her baby that’s all she can talk about, and she’ll slap a phone full of photos in front of you at any opportunity. Her entire life is about that baby. Having metastatic cancer has that level of intensity, it drives your every thought for a long time. And so you mention it because it’s always on your mind and sometimes, you are sick and you need help. Sometimes, you just want understanding. People, because they are innately good, play your game and even let you win.
Uncountable numbers of friends and strangers have brought over food, sent cards, given gifts to cheer me up, done special things for me over the past few years. They thought they were cheering up a woman on the verge of death. Sometimes, of course, they were right. There were times Death got into bed with me, but he always found me wanting and left. So were their efforts worthwhile?
In a way, with Survivor’s Guilt, you feel like you have scammed people. You hear those stories about the women who pretended they had breast cancer and even shaved their heads to start a crowdfunding account, and you cringe. “Do people think that’s what I did?” You feel guilt without committing a crime. Or maybe they think you didn't understand your diagnosis, and are, perhaps, stupid. Certainly, I've met a number of women who told me they had Stage IV cancer and in reality, had misunderstood their diagnosis (thinking a cancer cell in a axillary node was the same as a metastasis). Am I now in that group, people doubting my cancer had ever been in my liver or considered dangerous? Do they think I was a drama queen?
What do I owe these people, those who were kind, those who may doubt? My death? It feels like that’s the right and appropriate payoff.
Perhaps somebody thinks I have the metaphorical "job on earth" that has yet to be done. (If so, I'm guessing it's emptying the dishwasher.) In reality, I think chaos and medical science clash and the outcome is unpredictable. I got a good doctor who went above and beyond, I have a type of cancer that so far only wants to live in the liver, that didn't respond to chemo but does respond to Perjeta, and I was born at the right time to get these new treatments, ones that didn't exist five years ago, that now have extended my life into unknown territory. My doctor says I am an experiment, and he does not know and can’t predict what my future holds. He doesn't know how long I should be on this drug, what will happen if I go off it or stay on it – I’m a mystery, unstudied. My doctor did a Hail Mary Pass by putting me on this drug the way I am on it. The ball was caught in the endzone, and I'm doing the chicken dance - but the match is still not over.
Calling my own life lived and thinking it’s normal forever is a dangerous game. The Sword of Damocles still hangs above my head; to date, there is no cure for Metastatic Breast Cancer. Remembering that helps alleviate the guilt a little. Many of my friends have been NED and then relapsed, most of them actually. That’s the name of the game with organ mets.
But I’m starting to know some who are NED….and who stay there. Not only bone mets, but organ too, even brain. It’s early yet, but I hope I’ll be in that group, a long-term survivor. I'm starting to believe. I have already outlived the prognosis for a woman with liver mets. If my choice is to be hopeful or doubtful, I am going to choose hope.
Still, guilt is now in the mix of emotions that consist of long-term survival. Hope, doubt, guilt, worry...all normal.
When I wondered why I was the one to get metastatic cancer among everybody I knew who was diagnosed at the same time, I told myself, why not me? It has to be somebody. So that's going to be my answer when feelings of guilt rear up.
Why not me? It has to be somebody.