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.

Traveling Companions

The second anniversary of my cancer diagnosis is quickly approaching. Of course it has me thinking. A lot. Not all the thoughts are happy thoughts, but that just comes with the territory.

But some of those thoughts are happy thoughts. Warm, fuzzy, happy thoughts. Like the girls I met because I have cancer.

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These are women I would have been proud to count among my friends even before diagnosis, but I can’t imagine a scenario in which I would have met any of them outside of cancer.

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This weekend a group of us traveled to New Orleans to a conference for young women with breast cancer. We learned about treatment protocols, late effects of treatment, nutrition, dealing with the impact of cancer treatment in the bedroom, and myriad other topics, and we got to spend time with other women whose lives have been similarly impacted.

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Good times, good music, good food, good company…

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I think the people with whom we surround ourselves have a huge influence on our happiness. Sure, we all have those people around whom we have to tiptoe and walk on eggshells, but we can dilute their influence with so many more amazing people, people who lift us up and love us for who we really are. I’m so blessed to have such amazing friends – that they understand what I’m going through with cancer because they’ve been there too just makes it that much better.

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I’m a very lucky woman.

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Of course I still worry about how many years I have left, but even more important than the number of trips you make around the sun is your traveling companions along the way.

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You can learn more about my cancer story here:

my cancer story | Judy Schwartz Haley

 

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The camera bag – and an epiphany

The camera bag – and an epiphany

Thoughts on Being in the Picture

I like to joke that no one really knows what I look like without a camera in front of my face. I’m THAT girl at parties: the one who hides behind the camera, capturing moments more than participating. The one who rarely actually appears in photographs…

Put Mom in the Picture

When I was first diagnosed with cancer, this really bothered me. For the first time ever, it was REALLY important to me that I have photos of myself, and photos of myself with my husband and daughter.

I wanted my family to have them – not just in case I died, but also to mark who I am right now, because I’m evolving. My looks are changing daily as my hair grows back. My outlook is changing daily as well; each new day brings a new challenge, and something else at which to marvel.

I’m trying to teach myself photography, and in that process, I spend a lot of time studying the work of some of my favorite photographers. Each has their own unique and identifiable style. What I’m learning is that a picture doesn’t just tell you about the subject matter in the frame, it tells you a whole lot about the photographer. You can see moods, attitude, approach… you can see respect, affection, and love.

The photograph is a record of the world as I see it

That realization eased my mind a bit about my absence from the photographs. I understand now, that I am in all those photographs that I have taken.

The photograph is a record of the world as I see it. It’s an opportunity to look at life through my eyes, to see what I see.

My hope is that someday in the future – when my daughter is 13/16/18/whatever, and mad at me because I wouldn’t let her stay up late/take the car/have my credit card/whatever – that she will, every once in a while, glance at one of the millions of photos I’ve taken of her, and see that the person behind the camera loves her with everything she has to give.

I can see my attitudes in the photos I’ve taken. I can see the difference between the photos taken to simply to document a place, thing, or an occasion, and those that seek out the magic of the moment. Mood, attitude, and approach do make a difference.

The camera bag of my dreams

Long before I had a real DSLR camera, I had my eye on a camera bag.  Not just any camera bag, a beautiful camera bag from Epiphanie Bags.  

After I was finally able to get my good camera this summer (with some help from my mom – THANKS MOM!), I bookmarked my dream bag, and revisited regularly. But purchasing the bag was out of the question. The price was prohibitive.

Not to long ago, I even posted the link on Facebook with the words, “sigh… someday.”

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A couple weeks later that bag appeared at my door.

But here’s the thing: I didn’t order it.  

I don’t know who sent it to me.  It was delivered by the UPS guy with no note attached.

I laughed, I cried, I jumped up and down and squealed, even scaring my baby a bit till I convinced her it was a happy dance. I am completely in awe of this bag, and the kind, anonymous, generosity that caused it to become mine.

epiphany-bag

A Sense of Gratitude and Magic

I tear up every time I look at the bag, I also stand a little taller with that beautiful braided strap over my shoulder. That kindness now travels with me everywhere. Each time I reach for my camera, I am reminded of this generosity, and as I look through my lens at the world, I do so with a sense of gratitude and magic, and I hope that will show in my photographs.

camera bag

Thank you my friend, whoever you are. You have given me so much more than a gorgeous bag to cradle my camera. Bless you.

This is not a sponsored post.