Each time I lose a friend to cancer, this question comes up. When Gwen asked this of me after our friend Carrie died, the question took on heavy new layers of texture. You see, Gwen understood that she was probably next.
I stammered around, trying to come up with an answer, but I had nothing.
Gwen died a year ago.
I still haven’t figured out an answer to her question.
I wanted to answer her question. I intended to. The question never left my mind, and I’ve been stewing over it since Carrie’s memorial service. I’ve been carrying around these deep thoughts and this half written post for a year and a half – reworking sentences and angles as I go about my day, but I still haven’t fully answered the question for myself, making it difficult to coherently discuss.
How do you keep going when your friends keep dying?
In truth, I was scared. I was afraid of examining those feelings to closely, of allowing myself to feel the pain deeply enough to understand it. But mostly, I was afraid of imperfection, of falling short and saying something that was less than what the situation, and Gwen, deserved.
It’s not lost on me that Gwen’s motto was “Be Brave.”
Then last month, over the course of three days, two more of my friends died from breast cancer. I had to dive back in, and ponder, again, the imponderable.
This is my reality.
In each of the six years since my own breast cancer diagnosis, I have lost several friends to cancer. I refuse to keep a tally, so I’m not sure of the exact number, although I could come up with it fairly easily if I decided to do so. I don’t want to reduce them to numbers; I don’t want to carry a number in my head that just keeps having to be updated. I remember smiles, the sound of their laughter. I remember their stories, their quirks, and I remember the way each of them enriched my life.
The interesting part of this is that for each death, the grief is different – because my relationships and my memories with each of these women were different. There is no pattern, no rhythm to sink into to ease my way through the recurring process of grieving my friends. I have to figure it out all over again each time. Even in this past month, my experience of grieving these two women who died so close to the same time has been conflicting. I find myself in a denial stage for one, and at rage for the other, or some other combination that will not allow my mind a moment’s rest.
How do you do it? How do you keep it together, and keep on keeping on, and keep showing up when your friends are dying?
The fact that she asked this question of me says a lot about Gwen. Here she was, knowing she was descending into the valley with no way to stop it, and her interest was in how it all impacts me.
I guess the first answer is that I don’t always keep it together. I fall apart all the time. And then I pick up the pieces, with the help of my friends, and try to figure out a way forward.
I don’t always keep on keeping on, either. Sometimes, I get stuck. I get stuck in the sadness, the futility, the unfairness. Sometimes, I just check out for a while. But again, my friends help me find my feet and get going.
I don’t show up for them as much as I show up because of them. I show up because I need my friends.
The other question I get all the time is, “Why?” Why do you surround yourself with women whom you know will die?
This question leaves me sputtering every time.
Everyone dies. Eventually.
These are women who understand me, who know better than anyone what I’m going through with the long-term physical and emotional effects of cancer and it’s treatment.
I do volunteer with an organization that supports young women with breast cancer, the Young Survival Coalition, but I’m there anyway. People may assume there’s some kind of nobility in this kind of work, but I show up because that’s where my friends are. That’s where I go to be understood – to participate in sharing this heavy load together.
I wanted to tell Gwen it’s not a burden. It sounds like a burden, and when I let it get to me, sometimes it feels like a burden, but really, it’s not.
It’s an honor.
It’s painful, and sometimes feels unbearably so, and dammit, it’s so unfair!
It’s a privilege to be a part of their lives, even when such a short time is left, and to have them be a part of my life – a part that stays with me forever.
How do I explain what this feels like?
I thought of comparing it to a horror film, unfolding unbearably slow, as your friends get picked off one by one. But there are no basements we shouldn’t have entered, no one went off by themselves. While myths abound regarding early detection saving lives (Gwen was diagnosed at stage 1), or ways cancer can be prevented or cured, the truth is that not one of us deserved this. Horror films have rules, and cancer doesn’t play by rules. You can do everything right, and still die.
I thought of the frequently referenced battles, and the band of brothers-in-arms. But battles suggest both sides are armed, that there is some give and take. There are rules in warfare as well – oft ignored perhaps, but they exist. A band of brothers in a battle can cover each other, there are opportunities for daring rescues. No such opportunities exist in cancer – Believe me, if we could do that, these amazing women would have saved every one of us by now.
Perhaps it could be explained better with a reference to the Golden Girls.
I get by with a little help from my friends
My grandmother lived 99 years, but the last two decades were arguably the happiest of her life, where her interactions with her close circle of friends were daily; they all lived in the same building. Grandma also experienced this phenomenon, where her dearest friends were dying at an accelerated rate. That’s to be expected in your nineties, but it doesn’t make it easy. It doesn’t mitigate the pain.
I watched this play out in her life for years before my own cancer diagnosis. The friend who didn’t show up one day, and the worried phone calls. A friend’s failing health, and the helpless feeling of not being able to make it better. When they go away towards the end, and the family takes over, restricting access. The death watch, when you know its down to days and hours, praying for them to hang on a little longer, and at the same time praying for them to let go. Simultaneously feeling relief and utter heartbreak when they pass. Wondering if you’ll be able to participate in the memorial service, or if you’ll even be invited? What will you say? How will you find the words?
For a while there, I had my own real life Golden Girls as I spent time with my grandmother and her friends. I watched them discuss food, politics, grandkids, art, and that cute new guy who just moved in on the 16th floor. I think about Grandma and her friends often as my experiences at times mirror what I watched her go through. The pain, yes, but mostly the amazing, fierce friendships. I marveled at her circle of friends, forged in fire, and sealed with brandy over a shared crossword puzzle.
They mourned their losses together – and laughed while remembering, together. There’s something to be said for the collective memory. To recall a friend with someone else magnifies the experience. You remember more. You share details. You learn more about that person and so your memory becomes richer, more robust. They live on through our memories.
There is a cliche that misery loves company, but like all cliches, it’s born of a kernel of truth. We grieve better together. The process is more efficient, more healing, when we do it in the company of others who share our pain.
Self-Care is crucial
There’s a phrase we use within our circle of cancer survivors; we say, “I’m going to Target.” It’s a way of letting each other know that we’re ok, but we’ve got to step back for a while, indulge in a little denial, and pretend like our only problems are regular things like tantrums in the candy aisle, running out of laundry detergent, and finding cool looking school clothes that don’t aggressively sexualize our pre-pubescent kids.
“Going to Target,” is a timeout. It’s artificial, because the reality of life with or after cancer is that it never really leaves us. There is the very real and looming threat of recurrence or progression. There are all the long term side effects of treatment and encompass a wide array of issues including heart damage, nerve damage, metabolic and digestive issues, and teams of specialists who don’t always agree on the best course for treating our competing complications. It’s a good problem to have, I suppose, considering it means I’m not dead yet. Cue the survivor guilt.
So how do we get by when our friends are dying?
The answer to your question, Gwen, is that we hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
It’s not easy. It’s hard. It’s painful. It requires courage. And stamina.
It’s also achingly beautiful. And full of laughter.
I heard Carrie’s voice, saying, “You should do that,” pushing us forward as Katie and I built our journaling class. I hear her all the time, as I finally set to work making dreams I’ve held my whole life into a reality.
I hear Gwen saying, “Be brave,” even as I write this post. She taught me so much about courage. And I need courage by the bucketful. This kind of writing is terrifying.
I hear Michelle’s riotous laugh, and I remember to let loose. Life is meant to be enjoyed. Right up to the last minute.
Too many of my friends are dead, but they’re still with me. They still influence me, and because of that, they influence the world I live in as I move forward, carrying their light with me.
So how do you go on living when your friends are dying? You love harder, you embrace your friends, you remember together. And sometimes, you go to Target.
It has been almost exactly 5 years since my world was turned upside down with the words “It’s cancer.” In those years, there have been many things that sustained me: my family, my friends. I know I’ve written extensively about how my girls in YSC have held me up and helped me keep it together.
But another thing that helped me through this hell-ride of cancer survivorship is the voices of other bloggers with cancer. Through the magic of the interwebs, we were able to find each other, encourage each other, and be there for each other. These voices, I could recognize from just a couple sentences of their writing, but in many cases, I could easily pass on the sidewalk without recognition,
because we never met.
Last night, another one of those voices was silenced. Lisa Bonchek Adams died because of breast cancer.
It’s a little confusing for me. Despite all these deaths I’ve experienced over this handful of years, I still haven’t learned how to appropriately grieve, to mourn these women who, for a short while, traveled this same bumpy road with me. How do I mourn someone I only know through facebook exchanges, and blog comments?
But I’m making this about me. I’m furious and sad for children who were separated from their mother, for her husband, for her real-world loved ones, as well as all the lives she touched with her words.
But she will live on through all the lives she touched. She will live on through her words, her blog, so I will close this with a quote from Lisa:
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”
I have this enduring image of Candice in my head. It’s not real, it’s imaginary, but there’s truth in it. She’s wearing a white Grecian gown and angel wings. No, not actual angel wings – these she crafted, right there in my imagination. She whipped up these wings from 14-gauge wire, feathers, a bolt of vintage white and gold Hollywood Regency fabric, and her emergency glitter supply. They’re fabulous. So was she.
It’s her posture that really grabs my attention: a shrug, with her shoulders and hands slightly elevated. And with that shrug, she says “Hey, I’m not one to judge. Whatevs. But it seems like going out and doing something fun would be a better way to remember me than just sitting there on the couch.”
So I went to a party.
Ok, so it was a gathering of her friends with breast cancer, but she would have understood and approved.
We tried to wrap our heads around the fact that this bright light in our circle of friends was gone. We all wrestled with our own mortality. We talked about how difficult it is to describe Candice, and have people really understand just how awesome she was, or how deeply her absence is felt, about the urge to insist, “But you don’t understand! This was CANDICE!” Of course people didn’t understand, unless they’d met her. You only had to meet her once to really get it.
I mean, this is the girl who responded to the diagnosis of Stage IV cancer by learning to play the ukulele.
She really lived. She had a short life, 31 years, but she lived the full breadth of it.
The first time I met her she walked in bald and bold and lit up the room with her megawatt smile.
This was a support group for young women with breast cancer (Young Survival Coalition), and most of us showed up the first time not just bald, but feeling exposed, raw, and terrified – of both the cancer and the prospect of group therapy.
I remember tucking my feet up under me on the couch, and trying to hide behind a throw pillow, as if that was possible.
Not Candice. She walked in with a kind of confidence that made everyone take notice. She was even a bit giddy, asking so many questions, and even stopping to apologize for taking over the conversation. But glancing around the room, I could see the other girls were just as thrilled as I was with this new energizing personality in our group.
We all leaned forward when she spoke.
She had this big, generous spirit, ready to help out, lift spirits, or whatever was needed. But she didn’t take shit. She would call your shit out in a heart beat. I loved her for that. too.
We often discussed the bullshit that surrounds cancer, the stupid Facebook games where people pretend to be pregnant and that’s some how supposed to be supportive of people with breast cancer or spread breast cancer awareness… I could never figure out how anyone thought that would help. It just pissed Candice off. The way people tell us, “Oh, you’ll be fine, you’ve got a great attitude.” As if cancer paid any attention whatsoever to my attitude, or anyone else’s.
Candice did have a great attitude; can we just retire that particular turn of phrase?
Candice and I had this knack for getting hospitalized at the same time. She spent much more time in the hospital, but it seemed each time I went in, she was already there or showed up shortly thereafter.
This would be a bit more fun if we were roommates, or even showing up at the same hospital. But no, she went to Swedish and I went to UWMC, and then we’d sit up with our phones and laptops and text from one bed to another, laughing at the absurdity that so often accompanies cancer.
One afternoon after she was admitted to her room (I was at home) and we were chatting online when I had a medical situation come up. I called my nurse and they decided I should head straight in to the ER. Unfortunately, I was 20 miles away, and my car was in the shop.
I was still online with Candice, and she sent her husband to pick me up and take me to my hospital. Again with the absurdity as he left his wife’s side at one hospital to retrieve me and drop me off at another hospital before returning back to her.
There were so many stories like this we shared at our cancer girls party to remember Candice. We laughed. A lot. And then we got out those wild wigs that Candice rocked, and in a move we’re sure she would have loved, we each donned a wig (there were exactly enough wigs for our party) and toasted the memory of our dear friend.
I’ve been sitting on this post for nearly 3 weeks now. Partly just processing, trying to come to terms with losing my friend. But part of it is also the perfectionist in me. I don’t want to end this post right here because there are so many things I haven’t said yet – things I haven’t figured out how to say, funny stories, photos locked away in a cantankerous hard drive that I still need to retrieve, and I’m sure I could rework a few of those paragraphs a couple dozen times . . .
But I’ve got to let it go. I’ve got to get this posted, because in some odd way, withholding this post is keeping me from saying goodbye. And as hard as it is for me to say this, it’s time for me to start saying goodbye to my friend.
So I will leave you with this video of Candice Bailey and her ukulele and a friend singing “Sunshine through the Rain.”
She would have appreciated the fact that she died at 4:20 on April Fools Day. That was our Meesh: If you can’t change the inevitable, then you might as well find a way to have fun with it.
We can also thank her for the fact that for a couple hours at her memorial service, that church housed more boob jobs than a porn convention. That would be us, her sisters in this breast cancer sorority none of us wanted to join; a sorority from which we all gain so much strength and comfort, and even joy.
Most of the time, we don’t pay attention to the way people look at us when we are out together: the surprise when they find out we all have breast cancer, followed by the sad eyes when they realize we are all going to die. We look so normal. We’re smiling, and laughing. How can we be laughing?
The truth is that we are all going to die. So are you. Some of us just happen to be on an accelerated schedule. That’s where Michele’s wisdom helped me the most. Michele had a way of telling her story so that it didn’t terrify the newly diagnosed girls. She would spin the story each time, so it came out with a message, a little moral or lesson to tie up the anecdote like the “you see, Timmy” at the end of each episode of Lassie. She didn’t preach, she just showed us how to call bullshit on bullshit, how to advocate for yourself, how to pick up and move on, and how to focus on what you can change, and how to spend your time and energy on what really matters.
During the service, the Pastor shared Michele’s words. I didn’t write them down as he was speaking, so I must paraphrase, but they really stuck with me:
“Don’t wast your time on people who suck your soul out of you. Life is too short. Invest your life in what matters, because in the end, what doesn’t matter… doesn’t matter.”
I’m still angry that she’s gone. I’m still angry that her young daughters will grow up without her. But Michele would not want us to allow our anger or sadness to diminish the richness of our lives. Michele put so much love and energy and strength and wisdom out into the world; her influence lives on through all of us. Robert Holden said “the real work of our life is to love and be loved,” and the best way we can honor Michele’s memory is to do just that.
Thank you, Meesh, I’m a stronger woman for knowing you.
In the cold, dark, fear of 3 a.m., when the cancer patient is most alone, I found ToddlerPlanet, a blog written by cancer fighting princess warrior, awesome mommy, and astrophysicist, Susan Niebur (also known as @whymommy).
Days after my diagnosis, before I learned to reign in my imagination and to view Dr.Google for what it is, I found Susan’s blog. I read for hours: post after post, page after page. It seemed she was speaking directly to me, addressing my personal concerns about life, death, love, cancer, and most important to me at that moment, the well being of my child. No sensationalism, just an honest look at life and parenting as impacted by cancer.
It would be difficult and frustrating, and at times, extremely painful, she seemed to say, but my days would still be full of love and joy, and I can still be an awesome mom, and my child can still be happy. I read those pages through tears; I was so relieved and hopeful. In the two years since then, we formed an internet friendship, tweeting and commenting on each other’s blog posts. The internet has made possible friendships between people who have never met.
Who will never meet.
Today I read her blog again through tears. Susan passed away today. She touched so many lives, her husband and little boys, her friends and family, the science community, the blogging community, the cancer and health advocacy community… and me, a girl at a computer Seattle, whose life was blessed by knowing her, even though we never met.
Is it just me, or does the moon seem to be a bit bigger and brighter tonight? I’m going to think of it as Susan’s moon.
Thank you, Susan, for the love and hope and strength you shared with all of us. Godspeed.