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.

Vera Beautified Me for Get Hitched Give Hope

Vera Beautified Me for Get Hitched Give Hope

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.

photo by Priya Dandawate

And then we had a lovely chat while she did my hair.

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I’m telling you, even in this tiny apartment, I felt like royalty having someone come over to help me get prettied up.

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After Tanya finished with my hair, Megan Yamamoto came over to do my makeup.

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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.

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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.

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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.

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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.

Get Hitched Give Hope - young survival coalition
Get Hitched Give Hope Raises funds for the Young Survival Coalition and the Dream Foundation

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.

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YSC, the Tour de Pink, and #GivingTuesday

YSC, the Tour de Pink, and #GivingTuesday

A couple months ago, after a Tour de Pink training ride, my friend and fellow cancer survivor, Karen Lawson, posted a selfie on Facebook, and wrote, “Love these legs and the 57 HILLY miles they just carried me up.”

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Erin Johnson and Barb Greenlee
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I was surprised when my eyes welled up at reading her post.

In the nearly 5 years since my breast cancer diagnosis, one of the things I’m still working on is forgiving my body, and learning to develop compassion and even appreciation for my body – mutant genes and all. Cancer felt like a betrayal; my own body turned against me. I’ve learned that I am not alone in feeling this way. Many other cancer survivors are also working on developing healthier and more compassionate relationships with their own bodies.

This is one of the many ways in which connecting with a network of young breast cancer survivors through the Young Survival Coalition (YSC) has helped me in recovering from the physical and emotional toll of cancer and treatment.

For more on how the Young Survival Coalition (YSC) helped me, and other young women with breast cancer cope: Normalizing – in a good way 

The big fundraiser for YSC each year is the Tour de Pink, a challenging, yet scenic 200+ mile bike ride, one on each coast.

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It’s not a coincidence that YSC raises money with a bike ride – a physical activity that takes dedication, months of training, and builds strength and confidence in the participants. That’s right in line with what YSC is, and who they serve.

These photos and quotes are from dear friends of mine who participated in this year’s Tour de Pink.

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Brian and Erin Johnson

People often ask why I would ride my bike 200 miles. My response is simple: “because I can.” I’m only 34. I’ve been through so much and lost so many friends because of breast cancer. I can’t cure cancer. I can’t bring the 40,000 that will die from this dreaded disease this year, but I can push myself for 200 miles and raise funds for YSC.

Yes, I ride because I can; and because I know that if ever I’m unable, my sisters will ride for me.

– Erin Johnson

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Erin Johnson and Barb Greenlee
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Barb Greenlee and Erin Johnson
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Last year was my first TDP ride, and to be honest, I did it for myself. I wanted to challenge myself to ride 200 miles after taking up road bike riding just a few months before. I was really proud of myself when I finished the 2013 ride and couldn’t wait to ride again this year.

My reaction when I finished this year’s ride was quite different from the self-satisfaction I experienced last year, and it surprised me. While I was happy I had successfully completed the three-day ride, I felt another wave of emotion as I was sitting on the beach at Point Mugu. All the riders had crossed the finish line, had lunch, and were preparing to board the bus back to Thousand Oakes. I took a moment to sit quietly with myself, on a bench a bit removed from the heart of the activity, and just took it all in.

I looked at all the riders — survivors, supporters, friends and family — and realized that every one of them had some burden they were carrying, whether it was the angst associated with their own diagnosis, doctor’s bills, sore muscles, whatever. But at this moment, they were all lost in the revelry of having completed a really tough ride together.

Everyone was happy and celebrating, and forgetting — maybe just for this brief moment — all their other worries. It moved me to tears, and it was then that I realized that I do this ride not only for myself, but for everyone else participating as well.

It sounds cliche, but the collective burden carried by everyone else riding is so much heavier than my own. I HAVE to ride, even if it takes up my weekends to train, I need to juggle child care, and I have to ask my friends and family for donations (again).

I’m riding again next year.

– Sheila Cain

Tour de Pink 2014
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It’s #GivingTuesday. I love this new tradition. We are nearing the end of the year, so it’s time to think about giving, especially after a month of focusing on gratitude. I give my time and energy to the Young Survival Coalition, mostly because they helped me keep it together during and after cancer treatment.

You don’t have to ride a bike 200+ miles to help address the unique needs of young women with breast cancer. You can donate to YSC directly today. These funds are used to provide an online meeting place where young women can connect with others in similar situations to safely and discreetly discuss issues like the impact of cancer on body image, sexual dysfunction, raising children while going through treatment, pregnancy and cancer, fertility and many other issues. YSC also sponsors local groups were young women can meet up face to face, provides funding for educational programs, and treatment guides for young women who are recently diagnosed with breast cancer.

[Photos provided by Sheila Cain and Erin Johnson]
The Big C and Me:  My Cancer Story

The Big C and Me: My Cancer Story

My Cancer Story

My Cancer Story is a collection of my blog posts and articles about my cancer experience over the years. I decided to pull them all together into one place to make them easy to find.

This turned out to be a much bigger projected than I expected. I’ve cataloged more than thirty here so far, and there are many more to add.

my cancer story | CoffeeJitters | Judy Schwartz Haley

This is a work in progress. I will continue adding the posts already completed as well as the new posts to come, so check back from time to time. Tags are coming soon to allow for searching by topic.

It has been an eye opening exercise to go back through these posts and see how my attitude, perspective, writing style, and my life in general have all evolved over time.

My hope is that these pieces will provide someone with cancer some measure of hope, comfort, and useful information to help them along this difficult road. Even if you don’t have cancer, you just might find this story interesting.

My Life with Cancer

Living with Dying

Thoughts on friendship and cancer.

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.

How Comparing Pain Multiplies Suffering

No one should feel shame for experiencing pain. Pain is not a competition; it’s real and it’s valid.

Taking Back October

My friends are dying, and it’s not for lack of awareness.

Breast Cancer Awareness month can be a big money making machine, but make sure your donations actually make a difference

In the Moment

Contemplating a cancerversary (anniversary of cancer diagnosis) and embracing moments of pure joy.

The cancer experience changes over time.

 

Cancerversary

Cancerversary

One month ago today, we moved into our new home.

Friday, I registered my baby for Kindergarten.

Two days ago was my dear friend Dee’s birthday – a woman who lives thousands of miles away, yet somehow still finds a way to be here for me at those moments when it’s most important.

Yesterday was Candice‘s birthday, the first birthday she didn’t live to see, and I’m still angry that she’s gone.

In twelve days my little girl turns five.

On April Fools Day, it will be the first anniversary of Michele‘s death; that still feels like the cruelest of cosmic jokes.

In two months, if I manage to get my act together and pass these classes, I will finally graduate with my bachelor’s degree. It took 25 years from the start of the degree, and I stuck with it through several levels of hell, and no small measure of high water. But I’m right here at the end of that road, dammit, and I’m going to finish it.

And today?

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Today is my fourth cancerversary. It is the fourth anniversary of the day my world was turned upside-down. It is the anniversary of the first time I really had to grapple with my mortality, with the knowledge that I can’t control how much time I have left. I had to accept the fact that despite my infinite love for my daughter, I could not promise her that I would always be here for her. I had to imagine the possibility of her growing up without a mother.

It took a while for me to let go of the idea of getting back to normal – that doesn’t happen after cancer. Instead, I’m learning to dream new dreams, and take what happened to me and try to make the best of it. I could sit here and mope through the day, feeling sorry for myself, but I haven’t spent any of my cancerversaries that way yet. In fact, last year something magical happened.

Tonight, I will be meeting with other leaders of the local Young Survival Coalition to plan out ways we can help other young women with breast cancer through the year ahead.

Life keeps coming at me from a thousand different directions. It’s a maelstrom of joy and fear, comfort and pain, fun and hard work. It’s exhausting and overwhelming, and often moves me to tears. Maybe that’s how I know I’m really living.

 

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