Memoir, Cancer, And Tent Camping: My Friend Connie

 When a friend or family member is diagnosed with cancer, the effects ripple through the community. If we and our friend are relatively young, we may feel shock but also a sense of insulation. We have not yet begun to consider our own mortality, or the likelihood of losing our peers to accident or one disease or another. It hasn’t happened to us yet and the odds are still in our favor, particularly if we don’t smoke or drive drunk, we exercise and eat many leafy green vegetables. As the years and the decades go by, most of us will see an increase in morbidity if not mortality in our friends. They – and we – may develop osteoarthritis or Type 2 diabetes, high blood pressure, high cholesterol, all those common ailments of aging.  

Some of us will get Covid-19. Some of us will get cancer.

When my best friend, Bonnie, was diagnosed with ovarian cancer, she was the closest friend I had who had cancer. Since then, other friends have been diagnosed and some have died; Bonnie died in 2013 (peacefully, at home). One of the things Bonnie did way back when was find support groups for women with cancer. Maybe it’s a holdover from the consciousness-raising groups of the 1970s, but it’s practically a reflex: whatever is going on in your life, you grab a bunch of women to talk it through. Do men do this, too? If so, it’s a secret from me.

It turned out that a cluster of women who were at college with us at the same time and who still lived in the area wandered through these groups at one time or another, or were otherwise associated with this community. Some have also died, some weren't doing too well the last I heard, and some are thriving. One of those I lost was my friend, Constance Emerson Crooker.

Connie and I weren’t close in college, but it was a small school and everybody pretty much knew one another in passing. She wasn’t an avid folk dancer or a Biology major like me, but she and Bonnie stayed in touch so I’d hear about her from time to time. Connie was one of those who stepped up to the plate in Bonnie’s final weeks, and I was not only grateful for the extra and very competent pair of hands but for the chance to get to know her better.

Connie was a long-term melanoma survivor, a “late-stage cancer patient,” and made no bones about being one of the lucky ones. 

One of the things Connie did was to go tent camping across America. Another thing was to write about it and her cancer. I slowly read and savored her memoir, MelanomaMama: On Life, Death, and Tent Camping. Tent camping does not rank high on my list of favorite things to do. I didn’t grow up camping, and I’m poor at it at best. But as I wended my way through her breezy story-telling, I realized it didn’t matter whether it was tent camping or ice skating or tango dancing (which Bonnie did, clear through the week she went on hospice) or anything else that gives us intense joy.

William Blake wrote that if a fool would persist in his folly, he will become wise. I think that if we’re blessed to have enough time and reflection we can move through the shock and terror and sheer awfulness to some other place, one of “sucking the juicy joy out of life.” Which is why Connie’s tent camping spoke to me and I’m grateful she wrote her book.

When something awful happens to us or when we at last glimpse it in the rear-view mirror, many of us want to write about it. If we’re fiction writers, we use our imaginations to spin out stories in our preferred genre. A huge weight, a pressure of all the intense experience, the fear, the relief, the unhealed and oozing wounds, cries out for us to make sense of the whole thing. That’s one of the things that fiction does, and often it does it much better than straight memoir narrative. Fiction requires emotional coherence, at least genre fiction does. I make no promises about literary or experimental stuff. We think, If I could just nail this down in a story, it would make sense. I understand that longing, that temptation, and at the same time, in my own life, I’ve had the good fortune to pay attention to my gut feeling that I wasn’t ready. Maybe I’ll never be ready to “tell my story.”

But Connie was and she did, with wit and the ferocious clear-sightedness of one who knows she has been reprieved and what it has cost her. Some parts are travelog, some parts are survivalog, some are the observations of an intelligent, thoughtful person who has had a long time to decide how she wants to live each day. I couldn't read very much of it at a time; it was too “chewy,” too emotionally dense. I needed to reflect on what she shared and what it meant in my own life.

In Connie’s writing, I recognized something quite different from the impulse to tell our story to make sense out it. It was the even more powerful need to take what we have suffered and have it make a difference. Have our lives make a difference.

“Hey world,” she seems to be saying, “I was here. Me, the only Connie there is or will ever be.” 

“So now, I’m back to scans every three months. Watch and wait. Watch and wait. Wait for the pink and turquoise sneaker to drop. But I keep enjoying my miraculous recovery.

“When I say miraculous, I don’t mean a conventional miracle. … It’s miraculous that a Monarch butterfly can wing its way from Canada to one small patch of breeding ground on a Michoacan hillside. It’s miraculous that a black hole’s sucking gravity can pull everything, including light into is gaping maw. It’s miraculous that there are billions of stars in our galaxy and billions of galaxies in our universe…

“And I’m still here, gazing with wonder at it all.”

And sharing that wonder with us. Thanks, Connie, wherever you are tent-camping now.

GUEST BLOG: Article review: Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations

From Open Minded Health:

Gender and sexual minority health isn’t just about HIV/AIDS, sexually transmitted infections, and mental health. It’s also about cancers, and our exposures to risk factors for cancers. Why? Because everyone can get cancer, and we all need both preventative and therapeutic health care.

Cancer is not just one disease, which is why it’s been so difficult to “cure”. Cancer is when a cell mutates and grows out of control. The cells begin to invade other tissues, and can spread throughout the body. Any cell can become cancerous. And different cancers are caused by different things and have different treatments.

A recent paper, published online ahead of print, looked at the data surrounding lesbian, gay, bisexual and transgender/transsexual (LGBT) populations and cancers. They specifically looked at cancers which may be more common in LGBT communities: anal, breast, cervical, colon/rectal, endometrial, lung, and prostate cancers.

Why might these cancers be more common in LGBT communities? Perhaps because of higher levels of risk factors like obesity, smoking, and certain infections. Or perhaps because of lack of preventative health care.

But what do the data say? What data do we even have? So far it looks like we don’t have much information. Most studies about cancers don’t ask about sexual orientation or gender identity. But let’s take the data one cancer type at a time, just as the paper did…

[link] Bonnie talks about tango dancing and cancer

Here's a link to a short clip from the video the Smart Patients folks made of Bonnie. She'd gone tango dancing, oxygen tank and all. I hand in her favorite pair of shoes, red satin. The 7 1/2 cm heels are also the size of the largest of her lung tumors at the time she went into hospice. Damn, I miss that woman.

http://vimeo.com/75934182

Cancer Sucks, Thoughts From My Friend Connie

I've written before about my friend Constance Emerson Crooker's memoir, Melanoma Mama: On Life, Death, and Tent Camping, the "death" part being her ongoing tussles with Stage 4 melanoma. Stage 4 any-kind-of-cancer is majorly bad news, but melanoma is particularly nasty. Connie has, in her own words, won the lottery when it comes to treatments, but her future hasn't always been rosy and for all I know, is not now and never will be. During a nasty reversal, she wrote words that amaze me with their honesty:

When I imply my days might be numbered, people sometimes say, "None of us know how long we'll live." As if we're all in the same boat. As if I'm supposed to agree that it doesn't matter to me that I've been diagnosed with an incurable, life-threatening disease, because, after all, life is sure to end for all of us. Sorry, but I can't be so sanguine about it. I'm not saying this to garner the sympathy vote, but having Stave IV melanoma is not the same as knowing, generally, that all living things must die. It just isn't. Knowing that I can theoretically get crunched by a speeding train or knocked on the bean by a meteorite is not the same as the day-to-day realization that there's an enemy lurking in me that loves to suck my blood and grow out of control in all kinds of inconvenient places. I don't like it. I hate it.

It's not about not having lived yet. If there's some pleasure, licit or illicit that I've missed out on in life, I honestly can't think of it. I'm a fiend for sucking up life, rare and juicy.

It's not about not having contributed enough good yet. Of course I could do more, but I'm proud of my accomplishments.

Here's what it's about. Being sick just plain sucks. It's like being trapped on a nausea-producing carnival ride that won't stop to let you off. It's about feeling helpless in a cruel, cold universe that wantonly wipes out whole species, and doesn't give a flying fuck about one struggling human.

I'm reminded that the most loving and most powerful thing we can do for someone we care about who is living with cancer is not to cheer them up. It's to listen.


I highly recommend Connie's book, especially if someone you love has a serious disease like cancer. I wouldn't go so far as to give copies to everysingle friend and family member I know, but if her words have spoken to you, do check it out.

Memoir, Cancer, And Tent Camping: My Friend Connie

When a friend or family member is diagnosed with cancer, the effects ripple through the community. If we and our friend are relatively young, we may feel shock but also a sense of insulation. We have not yet begun to consider our own mortality, or the likelihood of losing our peers to accident or one disease or another. It hasn’t happened to us yet and the odds are still in our favor, particularly if we don’t smoke or drive drunk, we exercise and eat many leafy green vegetables. As the years and the decades go by, most of us will see an increase in morbidity if not mortality in our friends. They – and we – may develop osteoarthritis or Type 2 diabetes, high blood pressure, high cholesterol, all those common ailments of aging.  Some of us will get cancer.

When my best friend Bonnie was diagnosed with ovarian cancer about 5 years ago, she was the closest friend I had who had cancer. Since then, other friends have been diagnosed and some have died; Bonnie died in October (peacefully, at home). One of the things Bonnie did way back when was find support groups for women with cancer. Maybe it’s a holdover from the consciousness-raising groups of the 1970s, but it’s practically a reflex: whatever is going on in your life, you grab a bunch of women to talk it through. Do men do this, too? If so, it’s a secret from me.

It turned out that a cluster of women who were at college with us at the same time and who still lived in the area wandered through these groups at one time or another, or were otherwise associated with this community. Some have also died, some aren’t doing too well the last I heard, and some are thriving. One of these is my friend Constance Emerson Crooker.

Connie and I weren’t close in college, but it was a small school and everybody pretty much knew one another in passing. She wasn’t an avid folk dancer or a Biology major like me, but she and Bonnie stayed in touch so I’d hear about her from time to time. Connie was one of those who stepped up to the plate in Bonnie’s final weeks, and I was not only grateful for the extra and very competent pair of hands but for the chance to get to know her better.

GUEST BLOG: Janet Freeman on Gratitude and Stewardship

I was awed and inspired by how fully my friend lived the almost-five years between her diagnosis with Stage 4 ovarian cancer and her death last week. I am reminded that a terminal diagnosis does not mean we stop living -- it is an invitation to make every moment count, and thereby enrich not only the life of the patient but those around her. Here is author and lung cancer patient Janet Freeman-Daily on her own experience of hope, illness, and the zest of being alive.

I’m grateful to be here.  Actually, I’m grateful to be anywhere.  I’m grateful to be alive.  The fact that I’m alive is a modern-day medical miracle.

In May of 2011, after a few months of a persistent cough, I was diagnosed with pneumonia caused by advanced lung cancer.  No, I never smoked anything except a salmon.  Five months after diagnosis, despite chemo and radiation, the cancer spread outside my chest and I was given at most two years to live.  A year later, after more treatment and another recurrence, I learned my cancer had a rare mutation.  Last October, I found a clinical trial that could treat that mutation with an experimental pill, and I flew to Denver to get it.  In January, I achieved the dream of all metastatic cancer patients: No Evidence of Disease.  My cancer is no longer detectable.

I am overwhelmingly grateful for everything and everyone that has brought me to this state of grace: medical science that discovered new ways to treat my condition, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, and all the prayers and good wishes lifting me up throughout my cancer journey.  Thank you.  I am truly blessed.

I am not cured.

ARCHVES: Murder, the Death Penalty, and Cancer

Because I'll be busy helping with my friend's memorial and other family issues, I'm reposting something from a couple of years ago. Yes, Bonnie is the friend I mention. 

Twenty-five years ago, my mother was raped and beaten to death by a teenaged neighbor on drugs. My mother was 70 years old and had been his friend since the time he was a small child. For a long time, I didn't talk much about it except in private situations. This was not to keep it a secret, but to compartmentalize my life so I could function. At first, it was too difficult and then, as the years passed, I refused to let this single incident be the defining experience of my life. Recently, however, I have felt inspired to use my own experience of survival and healing to speak out against the death penalty. I don't write this to convince you one way or another on that particular issue, but to try to illuminate how the two issues are related for me.

My mother's murder was a spectacularly brutal, headline-banner crime, but it was only part of a larger tragedy, for the perpetrator's family had suffered the murder of his older brother some years before. I knew this, but for a long time it didn't matter. My own pain and rage took center stage. But with time and much hard work in recovery, I came to the place of being able to listen to the stories of other people.

We all lose people we love. Tolstoy wrote that happy families are all alike, but every unhappy family is unhappy in its own way. I would interpret that to mean that each loss, each set of relationships and circumstances is unique, but there are things we share.

What might it be like if one family member were murdered -- and another family member had killed someone? What does it feel like to watch the weeks and days pass while the execution of someone you dearly love draws ever nearer? How can we wrap our minds around loving someone and accepting that they have caused such anguish to another family? I've had a chance to talk with people in all these circumstances. It's been a humbling experience.

Year-End Gifts

Now is the time when Jews around the world prepare for the new year by examining their conduct and “making teshuvah.” Teshuvah means “return,” as in returning to our source, re-turning to our best selves. It’s often practiced by saying, publically and privately, “If in the past year I have done anything to harm or offend you, I am truly sorry and I ask your forgiveness.” (Can you imagine a world in which the leaders of the most powerful nations said that to the peoples of the least powerful?) It is considered a mitzvah to do this. Mitzvah means commandment, but it also means blessing and declaration. We offer ourselves in blessing to one another (and, if you are a theist, to the Eternal) in our willingness to admit our shortcomings and our renewed determination to make the world a better, less broken place (“tikkum olam,” or “repairing the world”). 

So I say this to you, who are reading my words: It has never been my intention to harm you but if I have done so, by anything I have said or done, or failed to say or do, I am truly sorry.

My personal focus during this season of renewal is different from what it has been in the past.  The world is full of sorrows, as so many traditions point out, sorrows that cannot be mended by human means. There is absolutely nothing I can do to alter the course of my friend’s disease (ovarian cancer).

There is much I can do to ease her final weeks.

Murder, the Death Penalty, and Cancer, a personal perspective

Twenty-five years ago, my mother was raped and beaten to death by a teenaged neighbor on drugs. My mother was 70 years old and had been his friend since the time he was a small child. For a long time, I didn't talk much about it except in private situations. This was not to keep it a secret, but to compartmentalize my life so I could function. At first, it was too difficult and then, as the years passed, I refused to let this single incident be the defining experience of my life. Recently, however, I have felt inspired to use my own experience of survival and healing to speak out against the death penalty. I don't write this to convince you one way or another on that particular issue, but to try to illuminate how the two issues are related for me.

My mother's murder was a spectacularly brutal, headline-banner crime, but it was only part of a larger tragedy, for the perpetrator's family had suffered the murder of his older brother some years before. I knew this, but for a long time it didn't matter. My own pain and rage took center stage. But with time and much hard work in recovery, I came to the place of being able to listen to the stories of other people.

We all lose people we love. Tolstoy wrote that happy families are all alike, but every unhappy family is unhappy in its own way. I would interpret that to mean that each loss, each set of relationships and circumstances is unique, but there are things we share.

What might it be like if one family member were murdered -- and another family member had killed someone? What does it feel like to watch the weeks and days pass while the execution of someone you dearly love draws ever nearer? How can we wrap our minds around loving someone and accepting that they have caused such anguish to another family? I've had a chance to talk with people in all these circumstances. It's been a humbling experience.

Living Now With Cancer

From my dear friend, Bonnie Stockman, as she faces her third recurrence of ovarian cancer, posted with her permission:

I'm going into my third lap.  One is such, ah, a virgin the first time.  So hopeful and optimistic for a cure even with less than charming odds.  The second time is a denouement of sorts, but a thin thread of hope hangs in there - I've talked to a couple of people that had a recurrence many years ago and are here to tell about it.  The third time... haven't run into anyone that's a long term survivor after the third time.  The stats for treatment effectiveness are similarly less than cheerful.  At this point, one term I saw used was "salvage chemo".   Buys one time - and hopefully salvages some decent quality of life.

I will miss hearing what happens in all the stories, but I am reminded that the stories are endless and the beginnings before my time.  I wonder about both ends of them, but all I have is my part right here in the middle of beginning and ending.  It was for others to know the beginnings and it is for others to know the endings, if indeed there ever are any endings.  Like the saying on the hippie school bus:  "Now is all we have".  

Indeed, we have now. And if we have been generous with our hearts, we have each other. Sometimes, we have each other even if we haven't, because life itself is full of gifts. Every day.

Open your eyes. Tell someone you love them. Listen when they love you back.