She wanted to talk to me about cancer, but she hesitated. She was worried because she thought her cancer wasn’t as bad as mine. When I finally realized the reason for the hesitation, for the trepidation in her voice, my heart dropped.
She had just apologized because she thought her cancer wasn’t bad enough. No one should ever have to do that.
It hurts to think I might have given that impression, but I know it’s not just me. This issue of comparison is part of our culture. We compare cars, houses, job titles, the behavior of our kids, and even our pain.
Comparing pain is insidious
We are measured against others throughout our lives (what is a Bell curve, anyway?), but at the same time we are cautioned against comparing wealth and power, and warned against envy and conceit. But when it comes to comparing pain, it’s actively endorsed. ‘Don’t feel bad, there are children in [insert third world nation that it is currently en vogue to pity] who have it so much worse than you.’ Comparing pain is deeply ingrained in our culture.
Don’t feel bad, we say.
Here’s another way to look at that: In the act of trying to console someone that way, we’re actually invalidating their pain. We’re attaching shame to the pain, and yes, that makes everything worse. No one should feel shame for experiencing pain. I don’t care if they just stubbed their toe, that shit hurts and comparing it to a brain tumor doesn’t make it hurt less.
Pity is not compassion
Also, a point about pity. Pity is condescending and dehumanizing, whether it is directed at someone on the other side of the world, or your next door neighbor. It others, creating or deepening the “us and them” perspective, and moving us further away from compassion and connection.
A few years ago, Brené Brown said that “Comparative suffering corrodes compassion and connection. It makes us judgmental and critical. Belittling our own suffering doesn’t elevate the suffering of others. It throws us into a ‘race for the bottom.’ It disconnects us from the truth that we are all inextricably connected – we all have strength and we all have struggle. We all need and we all give.“
I’ve seen the truth of that.
Your pain is valid
Whatever it is, your pain is valid. It is worthy of your attention. It is worthy of acknowledgement. It doesn’t matter if someone else has a different pain, or something some might consider to be a worse pain. You have pain. Deluding yourself, or trying to make excuses or rationalizing why you shouldn’t be experiencing pain won’t make it go away.
I heard a quote some years ago that has stuck with me over time. I have no idea who said it, and since I can’t remember the exact wording, I’m having trouble hunting down the source, but here it is in essence: telling yourself your pain is invalid because someone had it worse than you is the same thing as telling yourself your joy is invalid because someone had it better than you.
Avoiding toxic positivity
There is a cult of positivity in our culture as well – Suck it up. Paste on a smile. Hang in there. Fake it till you make it – And there are times and places for this approach. But positivity that is dismissive and forces delusion is toxic. We all need a place, a person, something somewhere that will allow us to let down our guard and get real.
Glennon Doyle once wrote, “You know, what strikes me is how desperately we all need to know that we are seen and heard. We don’t need our lives to be different, or easier, we just need someone to see the pain. To know what we’ve faced and overcome. To say: Yes. I see this. This is real. We don’t need a magician to take it all away – we just need a witness.”
When someone opens their heart, chances are they don’t need someone to come rushing in to fix everything, they don’t need delusions, they need a compassionate ear, they need a chance to release their story.
Some things have to be released before we can be free of them, or at least get up and move forward. Sometimes we have to acknowledge we have a problem before we can get help. Sometimes we just need permission to feel our own pain without shame.
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.
I was getting ready for Get Hitched Give Hope, an amazing, annual charity event that pairs wedding planners and vendors with happy couples planning their nuptials, and the proceeds benefit two organizations that support people living with cancer: the Young Survival Coalition and the Dream Foundation. It was my biggest formal event of the season, and the driving Seattle rain had just gone horizontal.
I was so glad I arranged with Vera to have stylists come to my home to do my hair and makeup. I could get beautified at home in my pajamas, and not have to brave the weather until I left for the party.
My hair likes to frizz and be difficult, and on a rainy day like this, I needed help. Tanya Joseph came over to do my hair.
Since she was right there in my home, I could show her my dress and jewelry, so she was able to make suggestions that would balance the neckline, accessories, and my hairstyle.
I washed it right before she arrived so it was ready for her to get started with a blowout.
And then we had a lovely chat while she did my hair.
I’m telling you, even in this tiny apartment, I felt like royalty having someone come over to help me get prettied up.
After Tanya finished with my hair, Megan Yamamoto came over to do my makeup.
Megan showed up with a coolest tower of tools and sooooo many pretty colors. Her hands worked magic with a palette and a few palette knives, blending colors and shades and consistency to find just the right mix for my skin.
She listened to my fears about too much color on my face, or the way my eyes get lost in shadows with too much smokey eye shadow. She found a good balance, and while I was a little nervous at first, I loved the look when she was done.
By the time they were both done getting me all prettied up, the sun broke through the clouds and we were treated to a stunning rainbow.
I kept thinking how much easier it would have been to have stylists come to us for my own wedding.
The rain held off for the rest of the night, and I had a lovely time at the event with some of my favorite people.
My hair stayed beautiful all night long, with nary a frizz, my makeup stayed put and looked fabulous, and Get Hitched Give Hope raised a lot of money to help people living with cancer while helping a lot of love birds plan their weddings.
Rather successful day all the way around, I’d say.
Disclaimer: Thank you to Vera and the stylists for providing these services to me for this special event at no charge.
Not only is Barb riding in the West Coast Tour de Pink, but in September she completed the East Coast Tour de Pink, and earlier this year her gorgeous cherry blossom design was selected by Liv/Giant for their official Tour de Pink bicycle.
Barb isn’t alone in this, and that is one of the reasons that the Young Survival Coalition (YSC) exists. Cancer can be very lonely, and much of the the breast cancer outreach is oriented towards senior citizens, and does not address the issues faced by young women, such as dating after a mastectomy, fertility, building a career while battling cancer, a cancer diagnosis during pregnancy or while breast feeding, and too many other issues to list here. YSC is there to help make sure no young woman has to go through breast cancer alone.
Barb is not alone on the ride either; she has a team pedaling along with her. Team Sakura is named for the Japanese word for the cherry blossom. These delicate blooms have taken on a special meaning for the members of our YSC group in Seattle. The blooms light up our spring, and they signify the temporary nature of life, as well as it’s delicate beauty. And they remind us to embrace each moment, to live fully, throwing everything we’ve got at life.
And so they ride. They ride to get back at cancer, they ride to support each other, and they ride because they can.
Last year’s Tour de Pink was the first for Karen Lawson as well. Neither Barb nor Karen thought of themselves as athletes. Karen said, “I thought it seemed beyond my wildest dreams. I could barely walk during treatment and physical exercise afterwards seemed like a million miles away from what I could manage.”
Barb and Karen trained together, along with their partners, Brent and Sebastian. The training can be difficult, often extending over a hundred miles each week. But completing the ride was a fulfilling experience:
“I’m awed by the support and love from all the other riders and volunteers. They are so dedicated. And then I’m so awed by the survivors riding. Really taking back their lives and doing something so hard with such grace. The ride is really tough, but it also feels really safe because there is so much support. It was a great achievement and made me feel really powerful. I didn’t have anything to prove to anyone but myself and I’m proud that I did that.”
This year they’ve got a much bigger team, that means more support, and more fun and antics as they prepare. Training is still intense, but they always travel at the speed of the slowest rider. It’s not a race, and no one gets left behind.
Sheila Cain is new to the Tour de Pink this year. She was surprised at the commitment involved in training. In the beginning she thought hour long rides were time consuming, but now six hour training runs are frequent. The sacrifice and the challenge of the Tour de Pink is not just the 200 miles one weekend each fall, it’s also the months of training that make that ride possible.
[Photos provided by Karen Lawson and Nicole Taylor]
Team Sakura Members:
Carl Taylor* *training only
These amazing people have done so much. They’ve endured the cut, poison, and burn that is cancer treatment – or they’ve been there for their partners through it. They’ve put in the blood and sweat to train for this event. The members of this team have logged countless hours volunteering for YSC in other capacities as well. And now, they are ten days away from the start of this epic ride.
They have a team page, and they have a team fundraising obligation of $25,000, and they are almost there. But not quite. As of today, they are about $1,500 short.
I’ve talked about YSC ad nauseum on this blog – but only because I am so passionate about this organization. The doctors saved my life, but it was YSC that saved me, my sanity, my spirit, my sense of self. I had wonderful friends and family members who were so helpful during treatment, but they didn’t comprehend what I was going through. The women at YSC did, and they helped me pull myself through.
I wrote this post last year, but Team Sakura rides again this year! Here’s a link to their 2014 fundraising page, in case you’re inclined to support these amazing women, and this organization that helps so many women living with cancer.
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.”
I learned the hard way that the financial implications of cancer extend well beyond just the cost of medical care. It’s a far too frequent story where jobs are lost, or the hours worked drop below the minimum to maintain health insurance – or pay the rent.
The cost of babysitters alone could bankrupt a family, and then there’s all those extra meals eaten out, and meal delivery services on speed dial, because mama just didn’t have the strength to prepare dinner. Again.
And don’t even ask about the condition of the house. At a time when cleanliness is more important than ever, the strength to tackle that job is tied up in continuing the cycle of breath entering and exiting the body in a timely manner. It’s really hard to scrub toilets while you’re going through chemo.
Paying it forward
Debbie Cantwell was blessed with a strong support system while she was going through her own breast cancer battle, so she decided to pay it forward. From her kitchen table, and armed with determination and inspiration, Debbie started a non-profit organization, the Pink Daisy Project, to help other young women with breast cancer who were struggling and didn’t have the same kind of strong support system to call on.
This is a very small scale non-profit, and the grants to these young women with breast cancer are quite small as well, a few hundred dollars in gift cards or services. Just enough to turn the tide a bit, to get the momentum going again, a lift, a kindness, hope.
How the Pink Daisy Project helped me
The help I received from the Pink Daisy Project while I was going through treatment did all those things for me. I could buy diapers for my baby, and put gas in the car, but it did something more than that, too. By lifting one of my burdens, the gift lifted my spirits. I felt less weighed down. It put a little bit of bounce in my step, my energy level actually improved. Kindness has huge implications in the world.
Every once in a while, I take advantage of the fact that my blog has an audience to tell people about the good work that the Pink Daisy Project is doing. I want to shout it from the rooftops.
But, at a moment like this, more importantly, I want people to consider giving. Financially, times are tough for most of us right now, and that translates into fewer and smaller donations than usual. Of course, the need remains, and applications for assistance keep coming in.
I think its important to note that the money is not just sent out to just anyone. There is an application process, and the stories are vetted. These are amazing, resilient women, who found the strength to ask for help when it became necessary. These are women who take care of others, but at this moment, need some care taking from others. Here is another family that the Pink Daisy Project helped.
This is Shelly and her son:
My name is Shelly and I’m a young breast cancer survivor.
During treatments and surgeries my marriage fell apart, I was unable to work and had another surgery in a week when me and my son had to leave an abusive life. I was terrified!
School was getting ready to start and I couldn’t even get pencils for my son.
Pink Daisy stepped into my life at that point, I received gift cards for Kroger , with those I was able to get all the supplies my son needed! I was also given food cards that helped us to have what little money I had go towards getting utilities turned on and food in our stomachs.
I cried with relief to be able to do these things, my son had already been thru so much, watching me go thru everything with treatments, and lost his world when we had to leave. And PDP helped me help my son thru the most difficult time we ever faced.
Me and my son have plans to help pay this gift forward so other families in same positions can get the help and lifeline Pink Daisy gives! We thank Pink Daisy and all the supporters of this wonderful group with all our hearts!
Please consider giving, or at least sharing this story.