I wasn’t expecting the question. I paused the TV and thought a moment. It occurred to me that I haven’t told her much about my father. He died from cancer before she was born. The proximity of his death to my own cancer diagnosis made it even harder to talk about.
I told her about how he always laughed at his own jokes, that his belly laugh made his whole body bounce up and down. And if he was sitting, his feet stuck straight out in front of him for the duration of the laugh.
I told her about how he loved to play guitar and sing to us, and he made up the most ridiculous songs.
I told her how he was often considered the smartest person in whatever room he was in.
I told her how we used to tease him about being short, and how he would tell his friends I was 4’20” rather than an inch taller than him.
I told her how he embraced our interests, how he dove in head first to whatever we were doing. When we got into theater, he memorized Shakespeare right along side us. When we played soccer, he trained to become a linesman. After my brother married a woman from Russia, my dad learned to speak Russian. He was all in.
I told her how he loved sports, how when I went home for a visit in ’99 I found him in his ref uniform watching the US Women’s team trounce China in the World Cup. I watched him flash a yellow card at China on the TV.
I told her how he was one of the Palmer High School football team’s most loyal supporters. Long after all his kids had graduated high school, he was still the keeper of the Moose Gooser, a cannon fired each time the Palmer Moose scored. He even took that cannon to away games.
She asked me if her grandpa would have liked her. “Oh, my, yes,” I said. “He would have loved you. He would have enjoyed your wit and your laugh. He would have loved playing chess with you. He would have loved that you’re learning French and Russian. He would have marveled at the amazing young woman you are growing into.”
My dad cared deeply about a number of things, threw his energy into a lot of things, but I suspect that, out of everything, being a grandpa was his favorite.
My girl and I laughed and cried at the stories. She snuggled and held me tight. We both grieved his loss and the fact that they never met. But mostly, we experienced my Dad.
She wanted to know how he died, and I told her about how his friends came over with banjos and guitars and played the bluegrass music he loved so much. I told her about how they played “I’ll fly away,” and how that song was even more special at that moment.
I’ll fly away, oh glory I’ll fly away, in the morning when I die, hallelujah by and by I’ll fly away
Then when his friends said goodbye, he got tired and went to sleep with my mom and brother sitting by his side. In the morning, he flew away.
Sharing this moment was a gift for both my daughter and I. We haven’t talked a lot about death or grieving, and this opened the door for some deeper conversation. This process was healing for me too. I’d forgotten how it can feel good to talk about someone you lost.
My father has been gone for 14 years, but for a few moments last night, he was right there with us. I felt like, in a way, I got to introduce them to each other.
The grief of losing him is still there, but it’s different now. The time helps, the talking helps, too. The grief is something that I carry forward with me. It has helped shape me. I’ve grown since his death, and that grief was a part of the growth. I would be a different person without it.
That’s not something I would have been able to hear or contemplate shortly after his death, and please don’t say that to anyone in the early stages of their grief.
I shed many tears last night. I cried again after G went to bed. I do miss my dad, I miss the relationships we might have had. But the tears were bigger than sadness. There’s beauty in this story. I experienced a sense of awe when sharing this story with my daughter. It was moving, it was deep, it was the same kind of tears we experience when watching a masterful performance, or viewing great art, or hearing a story of profound kindness. It was healing and transcendent. I’m not done grieving my father, that’s not something you finish. But I’m no longer afraid of the grief. I’m making friends with it, and that starts with talking about my dad.
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.
My bald head was covered with a baseball cap. I was out with no makeup to cover my chemo-grayed complexion as I pushed my baby girl on the swing.
She giggled and squealed, catching the attention of a young man passing by.
“She has a beautiful laugh,” he said. “Are you her grand… parent?” He stumbled over grandparent as we both realized that, not only had he grossly overestimated my age, he had no idea whether I was a man or a woman.
That wasn’t my low point.
The real punch to the gut came a few years later when I was getting my little girl ready for a bath and she casually asked me how old she will be when they cut off her nipples. No tears, no fear, just matter-of-fact assumption that somewhere along the line, her breasts get hacked off.
I felt like my body betrayed me
Cancer didn’t just take my health, it also made off with my breasts, hair, femininity, strength, and a good deal of my confidence. I felt like my body betrayed me. And now, in this hypothetical but not unlikely scenario, my daughter’s body would someday betray her as well.
I helped her into the tub and watched her pretend to be a mermaid. Her movements are fluid and unfettered by notions of shame or inadequacy. Her future is wide open – she can be and do anything, but at this early age, my life is her template.
I knew, sitting there on that bathroom floor, that I needed to wrap my head around this cancer and my body image before my issues became her issues. But first, I had to answer this big question from the little girl in the water.
“Not everyone gets cancer,” I told her. “I hope you don’t, but you might. It will be 34 years before you are the age I was when I got cancer, and that’s lots of time for someone to invent a cure or even a way to prevent it.”
By the time I finished those three sentences, the tub was full of toys and Poseidon was mediating a battle between a narwhal and a walrus. She had moved on and wasn’t listening, but I was stuck in my head trying to define what a healthy body image means, how to make that a reality in my life, how to convey that to my daughter, and how cancer complicates everything.
My body image issues started long before cancer.
At seventeen I was touring Washington D.C. with a group of 200 high school students from around the country. As we walked through the Mall, I overheard two of the other students discussing my appearance. “Judy’s legs are so ugly,” one of the guys said.
“Give her a break, she just got out of the hospital,” the other replied. (No, my health issues did not start with cancer.)
A small part of my brain acknowledged that the second student had jumped to my defense. Thank you, by the way. A much larger part of my brain registered that HE DID NOT DISAGREE with the first student’s assessment of my legs.
In the court of high school social politics, the issue of the ugliness of my legs was raised, and swiftly seconded. That was all I needed. The verdict stuck with me, and I kept my legs covered with tights or long pants for nearly two decades.
Even today, in my mid-forties, each time I leave the house in shorts or a skirt without tights, it is an act of courage that requires a deep breath before stepping through the door.
Why do they have so much impact?
I can’t remember their names. I would not be able to pick them out from a police lineup. I have not seen those boys (men, now) since 1987, and I bear them no ill will. Why do they have so much impact over the way I prepare to leave the house most sunny summer mornings?
It’s not even about them. It’s about me, and my willingness to cling to the derogatory comments and ignore the many more flattering comments I’ve received over the years. A large part of this is about me devaluing my own needs and comfort, and assuming that I owe the world something that I don’t.
After my first mastectomy, I agonized each time before going to the gym.
Sweat made the prosthetic breast slip around, and even fall out of my clothes. Yeah, that was embarrassing. I could stuff my bra with socks and they’d stay a little better, but as I pumped my arms on the treadmill, they’d pile up in the middle of my chest, making me look more Picasso than if I’d just shown up single-breasted.
It was all so inconvenient and awkward, and I contemplated not returning to the gym.
To what extent am I obliged to present myself as a double breasted woman?
Is it offensive to the other people if I show up with one breast?
I struggled with this question. I lost sleep over it. I imagined people who’d had arms or limbs amputated; I wouldn’t expect them to wear a prosthesis if they didn’t want to. Why did I apply a different standard to myself with an amputated breast? And then, I worked up the courage and took a deep breath before stepping through the door single-breasted.
Nobody noticed.
Motivational posters
I noticed a motivational poster hanging in the gym showing a woman drenched in sweat with the words, “If you look good working out, you’re doing it wrong.” Ha! Despite the fact that I know women who do kick ass while looking amazing, there is a great deal of truth to that poster.
Why had I not seen that before?
My body is a work in progress.
I don’t need a perfect body to have a healthy body image. My thoughts on body image are evolving, even as I write this. I am learning to accept and embrace both my vulnerability and my resilience – both integral parts of what it means to be alive.
I don’t lecture my little girl on these issues, although we talk about them as they come up.
I hope that she will see that ideas can evolve as people learn and grow just as our bodies do – that is also part of what it means to be alive.
Mostly, I put on shorts or a skirt with bare legs and go out side to play with her when it’s sunny. Sometimes, I even go through the door without noticing, and I’m out in the sun before I realize that I didn’t have to stop and brave up first.
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 love this annual wedding planning gala. Get Hitched Give Hope helps to raise funds for the Young Survival Coalition which helps young women living with breast cancer, and the Dream Foundation which helps to grant dreams to people who are at the end of their life journey because of cancer. I love that we get a chance to participate in making a huge difference in the lives of people living with cancer, and I have to admit, I also love the chance to get dressed up and spend the evening with 3 of my favorite women.
