Living with Dying: Thoughts on friendship and cancer

Living with Dying: Thoughts on friendship and cancer

“How do you do it?”

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.

“Why?”

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.

Why Mommy: remembering Susan Niebur

Why Mommy: remembering Susan Niebur

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).Why Mommy Susan Niebur

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.

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You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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It Gets Real

It Gets Real

She had warm eyes and the sweetest smile, but it was her wit that took my breath away. You had to pay attention because her comments were quiet, under-the-breath, but they would make you snort-laugh and shoot your champagne out your nose.

To be honest, I didn’t know her very well, we only met a few times, yet here I sit with a hole in my heart. I wanted to know her better. I intended to get to know her, but we ran out of time, and now it will never happen.

Elizabeth belonged to my support group, the Young Survival Coalition, a circle of friends all battling breast cancer much too young. Daughters and grand daughters, sisters, friends, wives, and mothers of young children – a group of women I embrace, knowing full well that it will lead to my heart break again, and again, and again.

This is where it gets real. You might think losing my hair or the amputation of a breast would make it real, but those are such trivial things when death becomes an issue. I know that in the years to come, some of these women I hold so close to my heart will die. I know I might be one of them. There is so much love in this group, and so much understanding. These women comprehend the pain, the fatigue, the body image issues, the adjustment to life with this monster inside, and worst of all, the fear that someone else will end up raising your child. They live with it, too.

This is the first time since my diagnosis that someone I know died of breast cancer. I hope I never get used to it.

Godspeed E-beth, and love to your husband and children.

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You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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The Last Post

The Last Post

Saturday morning Punk Rock Mommy died from inflammatory breast cancer.

Her husband uploaded her last post and I read itpunk rock mommy

and cried.

I never met Punk Rock Mommy, I had never read her blog before this morning. But I am struck by the human spirit and how impending death can clarify perspective. Punk Rock Mommy couldn’t be more different from my father, yet they both died from cancer in the past year, and they both, in that last year of their lives, gained a super-human measure of perspective and wisdom. Things that separated my dad from Punk Rock Mommy and Randy Pausch (who wrote The Last Lecture), things like religion, ethnicity, gender, and politics are superficial labels, but underneath – we’re all more alike than different. The messages that they left us with (or are leaving us with, Randy Pausch is still fighting pancreatic cancer) are essentially the same: love one another, choose to be happy, don’t ruin the rest of your life mourning, don’t live your life in “someday,” live right now, don’t waste your time on anger it’ll just ruin your day. This quote from Punk Rock Mommy really leaped out at me: “I am no doormat, but I just let go of all that hard core resentment.”

How can we learn from this? What would you do differently if you had a week, or a month, or a year left to live? What would you write in your last post? What message would you leave for your family, friends, and the world’s prying eyes?

Precious Fragile Life: When the unthinkable happens

Precious Fragile Life: When the unthinkable happens

Yesterday I was introduced to a new blog. I don’t know who directed me there because the moment I landed on this blog, time stopped. This is the heartbreaking, achingly beautiful story of matt, liz and madeline. Liz gave birth to a beautiful baby girl in March, and died the next day. This blog is about everything that happens after: a day by day account of Matt learning to be a father and grieving his wife at the same time. He has a strong community of friends, and a larger community of strangers reaching out to him from around the world. Madeline is lovely at a little over a month old and Matt is doing a great job with her. Every person in this story is beautiful, yet each new post brings more tears.