Wednesday, December 17, 2014

Survivor's Guilt

“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.

Guilt.

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.

20 comments:

  1. O. M. G. This is SO me!!!! Wondering why (and thanking God that) I'm still here. My sister-in-law told me at thanksgiving that she even forgets I'm sick b/c I'm still doing stuff and look so good. I'm not sure how to take that. At the same time, I just told my husband that I want to go to Hawaii for our 30th anniversary. We celebrate our 24th later this month. Go figure. Thanks for putting into words what resides deep within me.

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    1. I went to Hawaii for my 50th birthday-a year before I was diagnosed. It had been my lifelong dream. We stayed at Ka'anapali Beach in Maui for ten days. We sunned, drank pina coladas, went to Lahaina, shopped, whale-watched, went in a submarine - it was everything I'd hoped for and more. The air smells like plumeria, it actually rains flowers in Hawaii, and little drops of rainbow blow off the hills. It's magic. I am so happy I went before all this started - it's a wonderful memory. I think you should plan it for your 25th! There are deals to be had, especially if you are on the west coast. *hugs*

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  2. Very interesting. Thank you....

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  3. the answer for me is that life is a random crap shoot. we won the lottery just for being born in the US. I am healthy but my son is not. There is no fair or right with this stuff. You lost the lottery by getting bc to begin with. You won the lottery by having a happy successful child. Mets was the worst, and yet you are here. Are you lucky or unlucky? Black or white? It's all gray, a random soup of stuff. The best I hope for is to not hurt folks along the way, to be kind before I die. Best of luck for continued good health.

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    1. Right, you have the same philosophy I do. It's chaos, no rhyme or reason. And, having healthy kids is winning the lottery, without a doubt, no matter what happens to me.

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  4. Guilt is an ugly emotion. It dictates that we should feel bad when good things happen to us. I hope you can escape guilt's grasp as you continue to have fantastic results from Perjeta. Your success is cause for celebration. As Anonymous stated above "life is a random crap shoot". There are lots of experiences or behaviors that we can feel guilty about, but I think living is not one of them.

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  5. Its nice you are feeling better and are still here.

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  6. xoxox!!!! This is such a good read and Ann, I love your writing :)

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  7. What an interesting, thoughtful, funny post. Thanks for sharing!

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  8. Authentic person--and writer. Thank you for sharing this.

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  9. This is very well written; it must also feel very lonely as the number of mets women with long term survival is so small. But don't feel guilty about having ordinary problems or hangups. After all, that's what life is all about and isn't that all anyone with a life threatening disease wants, to have an average/normal life?

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  10. Hi Ann, I read your blog to understand more about the illness that has affected many friends and family - and to wish you well! And, of course, to enjoy your wonderful writing. Don't feel a moment of guilt - you are an inspiration whichever way your health goes, but to be in such a positive place right now gives hope and joy to us all. Good people love to help each other and be needed when times are tough - to have that sense of community and see you now enjoying life must be a double blessing. Happy Christmas to you and your family. L, from the UK

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  11. Hi Ann,
    This is such a good post for so many reasons. Survivor's guilt is something we all struggle with from time to time and as you wrote about so eloquently, even women such as yourself who are living with mets can feel it. The mind is a complicated thing and cancer is pretty darn complicated too. Maybe it is all a crap shoot. Thanks for sharing some thoughts on this topic that we all think about. And much love to you and yours this holiday season.

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  12. Hi Ann.
    As usually, you are spot on.
    I went through NED for 15 months. Began to think it was permanent. Began to hope someday I would even be off the crummy meds and feel halfway normal. Maybe I was going to get my chance at being a little old lady someday after all. Of course now, it's back and I'm off the old crummy meds to be on new crummier meds.
    We go from treatment to treatment, in and out of NED, until there are no more treatments. A few, for reasons no one understands yet, will stay in remission a very long time or even for life.
    I know you don't believe, but I pray for you anyway, Ann. I hope your NED is permanent. You may think it is luck or fate, I think it is up to God, but what we both agree on is that we ourselves, not even our doctors although they do their best, ultimately have control over this disease and it's progression or remission.
    And don't worry about the dishwasher. I think you have a more important purpose than that. This blog, for one.
    Merry Christmas and many Happy New Years!
    Elizabeth J.

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  13. Dear Ann -
    Wishing you Happy-Holidays-That-You-Never-Thought-You -would-See. I felt that way a few years back. 14 years ago to be exact - then my follow up in the first week of January crashed my hope. Cancer back and rampant.

    However, here I am able to read and write back to you. As one of those who inexplicably was able to fend off two more bouts with mets, and now off all treatment. I have no real idea how I did that or why the treatments worked for me. I will never look a "Gift Treatment" in the mouth - just take it and tell my body to use it the best it can and as intended by the scientists who spent so much time to create said treatment.

    You wrote: "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."

    I had such passing thoughts, too. But they were getting in the way of ME taking care of ME, so I could help my family members up and down the line from myself who really needed something from me. (Maybe being the oldest of 4, and having it drummed into my head that I needed to set a good example had something to do with that.)

    What I got out of your post is that so-called "Survivors Guilt" is harder on us who are surving serious advanced disease. And you wind up your post with the words of my oncologist, who put it the same way. "Someone in this trial will have a complete response, and it could be you."

    Much as I doubted him when I heard those words, I knew to my core that statistics always need a variety of resposes to plot, and I wanted to be above the median.

    It has taken a long time, but my brain fog has improved, and yours willl too. I look forward to your post one year from now.

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  14. Dear Ann, I've been reading your posts for years. I always log in with fervent hope that you're still around to enjoy life, watch your son grow up, and share your trenchant observations with the rest of us. Why should you feel guilty for still being here? You are a source of hope and inspiration to so many dealing with BC. Think of that as your calling and understand that maybe having that sense of larger purpose may play a role in your very survival. It's been proven, time and again, that being imbued with a sense of meaning and purpose, even in the face of the apparent senselessness of life, is good for your health. Keep sharing your wit and wisdom with us for many years to come. None of us knows our Expiration Date, and just as well so!

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  15. Ann, no one person can encompass all experiences within the large umbrella of cancer. No one person can be something to everyone. Your experience is your own and it moves the people who need it. Just keep being you, doing what you do. We're all happy for you and admire you. You're one person who makes a huge difference.

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  16. Thank you for writing this...feeling the same guilt sometimes it helps to know there are others too! Greetings and best whishes from one stage IV to the other from Germany

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  17. Oh my goodness, Ann, you've got inside my head and described perfectly everything I feel too! I'm now living on "borrowed time" it was 27 months I was given a prognosis of 26 months, and on most levels it feels fabulous, but there are these niggling moments when I doubt everything and feel like a complete fraud. Maybe we're a group of long-surviving pioneers who can change the landscape for all Metsters coming after us? Maybe that's what our purpose is - oh, and of course, to empty the dishwasher...! Yvonne

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