On Friendship

April 2nd, 2012 § 19 comments

We gather friends like seashells throughout our lives, tucking the treasures away to take with us as we walk. At different times, we appreciate different qualities of those friends; characteristics that initially attract us to someone may later be a source of discomfort. Some friendships last entire lifetimes, others are brief but intense. Friendship is an art form, one we must learn and practice daily.

I recently read Lindsey Mead’s post about friendships made during life transitions. She writes, in part: “It strikes me that it is not an accident that our truest and most lasting friendships are forged during times of life transition; we are closest to those who have shared experiences that changed who we are. Whether it was childhood, college, or becoming mothers, this is true for me.”

I’ve thought about this for weeks because while I absolutely understand what she is talking about (and do have some friends like this), I’ve also seen many of those friendships fall by the wayside. I have written before about the ways cancer and friendship sometimes don’t mix. There are friends who just can’t deal with a friend’s illness and/or death of a family member and they just disappear. In contrast, there are friends who seem to thrive on helping when there is a crisis underway.

When I was diagnosed with breast cancer at 37 I did not have any friends who had already had the disease. One of my closest friends has a son who had experienced leukemia twice and received a bone marrow transplant from his sister that saved his life. I talked with her a lot, not only because she had some sense of the fears I had but also just because she is my friend and a great listener. While I treasured that connection, though, I didn’t know anyone who had recently had a double mastectomy, chemotherapy, or needed to figure out how to balance those treatments with caring for three young children. My diagnosis preceded my involvement with Facebook and Twitter; social media would have greatly changed my experience with cancer.

I didn’t like support groups; they just weren’t right for me. Instead, I found myself talking to and finding support from a few women who used some of the same surgeons I did. We’d see each other in the waiting room at the plastic surgeon’s office when we went for weekly “fills” to add saline to the tissue expanders in our chest that were stretching the skin and making space for the implants some of us chose to receive. During chemo, nurses would often try to put younger patients in the same semi-private chemo room so they could meet and pass along wisdom and support.

Not every interaction I had led me to a friendship, of course. Sometimes in stressful situations we just need someone to help get us through. Like the stranger in the seat next to you during a turbulent airplane ride who chats with you and passes the nervous minutes, we rely on strangers to steady us when we wobble. We look for cues that everything is okay, that our experience is in the range of what might be expected.

But as my chemo and surgeries and constant doctor appointments waned, there was more room for “the rest of our lives” in the conversations I was having. One woman and I became quite close; we’d meet for coffee and spend hours talking about cancer, its effect on us, our children, our spouses. We were different kinds of people, though, in dealing with our similar cancer diagnoses. As time went on, it became more and more apparent. For example, she didn’t want to share as much information with her children about her cancer as I did. She turned to controlling food as a way to deal with her fears of a recurrence; she felt she would be immune from a recurrence if only she only ate certain foods. She wanted to train to be a Rekei healer. Eventually, though, it was our disparate attitudes about cancer that drove a wedge between us. She felt it was important to always put a sunny face on cancer; she felt it was necessary to find the joy in it. She had a “head painting party” when she went bald from chemo. She had her daughters paint her head with designs and words. She collected positive sayings into a little book that extolled the virtues of positive thinking as a key to remission success.

I could be her friend and listen but I could not agree with what she believed. The thought of someone placing their hands over my skin but not touching it and transferring energy to me (Reiki) did not work for me. I didn’t believe that food was key to avoiding cancer (after all, I had friends who had been vegetarians before they got cancer; if food were the simple key to avoiding cancer we’d have figured that one out by now, I thought). I felt control of food was a grief reaction, a way to manage fear in an uncertain world. That difference alone would not have come between us, though. I think it was the “positive thinking is the key” that I think was the biggest stumbling block. We just fundamentally differed about how to approach this disease that dominated that period in our lives.

I was strong, determined, motivated. I researched the available options and discussed them with my medical team. I pushed back when they suggested certain treatment options. I was a participant in my treatment plan. But I also felt that this thing called cancer SUCKS. And it was okay to say that. It was okay to have a bad day, or hate shaving my head. I didn’t have to have a head painting party and rejoice in the experience of going bald from chemo. It was okay for me to get halfway through shaving my own head in my garage on the morning of my second chemo and tearfully ask my father to help me finish because I couldn’t get it all. It was okay to cry, to scream, to pout for a bit. Then I picked myself up and moved on. That’s what worked for me.

Every time I got a piece of bad news or felt overwhelmed after a doctor’s appointment I allowed myself 24 hours to recover. That day I could complain, feel the injustice of it all, just react. But the next morning: it was time to get on with it. Those negative feelings were important to me. They were real. They were how I felt. And having someone constantly saying that I should only think positive rubbed me the wrong way. It was, to me, “pinkwashing”: making breast cancer seem less awful than it often is. If the only things I expressed were how “cancer is a gift” and I “had to find the beauty in it” (as she did) that denied a very real truth to me: cancer had fundamentally changed my life and those around me, and those changes weren’t always positive.

It didn’t mean there weren’t experiences or people or lessons that I appreciated. It didn’t mean I didn’t want to emerge a wiser person for having gone through it. But “cancer is a gift”? No way. I saw blogs and books where survivors wrote, “Cancer is the best thing to happen to me.” I will never say those words. I think of all of the people in the world who live with cancer every day, whose lives will be cut short by it, who have lost people they love to the disease. In my mind it diminishes their deaths and diminished quality of life to say their disease is a gift. I will not say that cancer was the best thing to happen to me.

My friend and I just sort of fell out of touch, though we have talked a few times in the last few years. We have only warm feelings for each other and wish each other good health and happiness. But we aren’t close. And what that tells me is that cancer is a part of life. You can’t make a relationship work just because you have the same disease. We have different kinds of friends for different reasons. Some we love them because they are “just like us” and share common interests or senses of humor. Some we love them precisely because they are different– they push us in ways we are not accustomed to or expose us to interests or information we otherwise might miss. In this day and age we have Twitter friends, best friends, school friends, Facebook friends, etc. We interact with a variety of people in very different ways.

I also realize that we have different levels of patience for conflicts at different times in our lives. Maybe the differences I had with my friend about cancer wouldn’t bother me so much now. Maybe we were both raw and stressed about managing our illnesses and our families. We supported each other through the hardest times and once that period was over we just moved on in different ways. Maybe that wasn’t even what really caused our relationship to cool off in the first place; after all, we didn’t part ways on bad terms, the friendship just “fizzled.” It happens.

I realize I’m more likely to make friends in the daily grind of life, and my life is full of more people I consider friends than ever before. I have a rich network of people I like, trust, and enjoy spending time with. We are not always similar, and we don’t even have to share the same beliefs all of the time. Respect and kindness are hallmarks of friendship, and every relationship for that matter. I really enjoyed thinking about the friendships I’ve made, how I’ve made them, and which ones haven’t worked. The topic of cancer and friendship is one I will continue to write about. I treasure the friends I have. I am fortunate.

Thank you to Lindsey for planting the seed for me about this topic; she and her blog frequently push me to think, learn, and grow. I’m still ruminating on this subject… and I like that.

 

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Where do we go from here?

February 29th, 2012 § 3 comments

Yesterday I wrote about the past and present of my parents’ relationship. Today I talk about its future. Their commitment to each other has not ended. Their respect and concern for each other continue. I have done what I can over the last few months to help smooth communication and have been an integral part of the evolution of their relationship. I take great pride and satisfaction in knowing that I understand each of them well enough to do so, and I can definitely say that it’s one of the most difficult but gratifying things I’ve been involved in. It is not only for their benefit, but for my own, that I’ve done this. I want them both in my life, and in my childrens’.

Over the past few months during their separation, their friends and acquaintances have at times been more uncomfortable than my parents themselves have. On one occasion my mother arrived at a restaurant for lunch with a friend to find my father already there lunching with a friend of his. The staff wasn’t sure how to react, offering to seat them in different rooms. It wasn’t necessary, my mother told them, it wasn’t a problem.

My parents and I have spent many hours talking about their relationship and its future. We talk about their relationship as it was, as it is, and as it could be.

There is still a great deal of affection between them, there is a bond of 50 years of life together. Their memories are mostly of life with each other, I’d bet. They have two children and six grandchildren. They are intelligent and accomplished individuals who have spent their careers helping others. They are strikingly different; however, each was able to help a legion of patients.

My parents are committed to each other. No longer will they be married, but instead they will be bound by what is right. They are firmly committed to helping each other. After my mother moved into her apartment last Autumn she fell and badly injured her leg. She called my father. He took her to the emergency room. He took her to follow up appointments. When she needed to be hospitalized for IV antibiotic treatment he assisted. After she was released he went to her apartment and changed the dressing on the leg (often daily) and checked on it for healing and infection. She had a problem and in his usual way, he wanted to help fix it. I was touched by his devotion to her after the separation, but not surprised.

She remains concerned about him, his safety, his health. Should he have a medical crisis, I know she would immediately be there to help.

They have attended events together as recently as last week. They live in a small town and will no doubt see each other often both intentionally and unexpectedly. As their child, what matters most to me is that they can rely on each other since they live only two miles apart from each other; I am hours away. Of course I worry. Of course as they age I will worry more.

Those who know me have sometimes wondered why I’ve been as involved as I have over the past six months as all of the transitions have occured. Often, friends have tried to discourage me from being involved and told me to “just get out.” They say I shouldn’t have been in “the middle.” What I can say is this: they are my parents. They are my responsibility at this time in their lives in a way they might not have been when they were younger. I am hopeful that they can each live alone and enjoy their lives as much as they can for as long as they can. But when they can’t, I am committed to their safety and well-being. Helping to ensure that they understand each other and can move forward as peacefully as possible is important. It’s important because we are still a family. My brother and I are ties that bind them, our children do, too.

We are a family. We remain respectful, caring, and committed to help each other.

The truth of the matter is that there isn’t anything I wouldn’t do to help them, as long as they need me to. This has been a time of acute change, and when I was needed I stepped up. Going forward, we hopefully won’t need this to be the case as often. But this is what is right for us. The months I’ve spent triangulated in this process have been meaningful, valuable, necessary. I’ve helped them reach a state where we all can look to the future and say it might not be what we would have dreamed, but it still can hold more wonderful memories for us, both together and apart.

 

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Those days are no more

February 28th, 2012 § 25 comments

I remember the old days.
I remember the way my father looked at my mother.
I remember when they were married and living together.
Those days are no more.

……………

I remember when they danced in the living room as my brother and I watched.

I remember my mother clicking her tongue to the beat, waving her arms in small circles, wrists cocked, like windshield wipers gone awry.

I remember my father smiling, biting his lower lip, chin extended outwards, hopping and bobbing to the beat.

……………

I remember when he would ask me, “Isn’t she cute? Isn’t she adorable?” and playfully pat her on the rear.

I remember the way she said her heart went pitter-patter when he walked in the room.

 

I remember when she listened to talk radio as she cooked, the wire antenna taped to the underside of a cabinet so that her favorite station’s reception would be strong. Masking tape marked with surgically precise lines identified the stations she would tune to.

The radio always got turned off when he pulled in the driveway.

……………….

I remember falling asleep in the backseat of the car.

I remember waking up, startled, not realizing where I was.

I remember them twisting from the front seat to say, “Surprise! We brought you to see the panda bears at the National Zoo!”

I didn’t think life could get any better than that.

……………….

I remember the fights. The yelling. I remember newspapers on a kitchen chair, shoes on the table. I remember so much more.

I remember their wedding anniversaries on Christmas Day. Nothing open, nowhere to go, no good way to celebrate.

I remember cardboard cartons of Chinese food.

……………….

I remember the beginning of the end.
I remember their being close to the precipice once before, my relief that it went on.
I remember it finally being the end.

……………

There is a small guest room in the house that I now call my father’s. It used to have a crib in it; now, as my three children have grown, it’s been replaced with a twin bed.

I know that in the closet there used to be a small white leather briefcase.

Inside that briefcase is a Viewmaster and two rows of dual-image slides. These are my parents’ wedding photos: three-dimensional images that get popped into the Viewmaster and looked at through light.

I haven’t looked at them in years; suddenly, it’s the only thing I want to do.

My mother’s brother, so young in those images, died in his 40s. My father’s brother, now dead too. Neither has living siblings, nor living parents. There are so few of us in the family left now.

…………….

I see the disbelief, how people are unwilling or unable to accept that something that lasted for so long is over.

It scares them.

Like cancer that recurs after a decade, it means we are vulnerable even after a seemingly safe waiting period has elapsed.

Divorce can happen after 50 years.

……………..

“They’ll get back together,” one of my doctors insists whenever I see him for an appointment.

“No,” I say, “they won’t.”

…………….

“Did you see it coming?”

“Do you think they’ll reconcile?”

“What happened?”

“Are you surprised?”

…………..

“You’re the writer,” my mother says, “Maybe you’ll write about this.”

……………

I took my mother’s wedding ring out of the drawer this morning.

She gave the ring to me years ago when Dad eventually bought her the diamond one he hadn’t been able to afford when they got married.

I rubbed the ring, imagining the two young people who stood exchanging vows.

Hopes. Dreams. Compromises.

A lifetime together. Their lifetimes together.

Until now.

 

I know my mother has a receipt for that ring, 50 years old, in a file.

I know where that file was when she lived in the house.

But now she doesn’t live there anymore.

Her papers are in boxes in storage.

Somewhere in a box in my mother’s apartment building there is a receipt for the ring my father bought for her.

That paper will outlast their marriage.

……………

I remember when that ring proudly announced to the world that my parents were happily living together.

Those days are no more.1

  1. The prompt “I remember” was used in Joe Brainard’s book of the same name. I first learned of this book in a seminar with writer Dani Shapiro. I like this prompt a lot and often use it as a way to get my writing started. To read about a joint exercise I did with friends after that weekend, go here [↩]

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Why I divorced the Susan G. Komen Foundation years ago

February 3rd, 2012 § 273 comments

I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge organization which claims to be committed to finding a “cure” for the disease I have. Even my choice of words there is related to my criticism of Komen; I think they need to focus less on a “cure” and more on acknowledging and helping women deal with cancer after their initial treatment and/or those women like me who have metastatic breast cancer. Survivors, and there are more and more of them, have long term physical needs, psychological concerns, and medical issues that are unique.

I started out like many breast cancer women do, looking to give something back when I finished my surgeries and chemotherapy. I was energized, and wanted to help. Of course, the Race for the Cure in Central Park is one way to do that.

In 2008 I joined a family friend and her fellow Yale students for the Susan G. Komen Race for the Cure.

 

 

 

 

 

 

 

 

 

 

 

 

 

I believed I was a part of something big, meaningful, important.

The following year I asked my parents if they would join me at the Race for the Cure to mark my 40th birthday. At my birthday party I eschewed personal gifts and asked instead that guests donate to our family team. We raised almost $15,000 that year between the party and other donations. My mother (a stage III cancer survivor) and I walked in our pink t-shirts with my father and my daughter Paige.

 

 

 

 

 

 

 

 

 

 

 

 

I wrote a piece in 2009 (titled “A Walk in the Park) about the experience. I’m including the text here because I think it shows my commitment to the cause, to that day… at least what I thought that day meant.

 

“More than just a walk in the Park.” 

That’s the catchphrase that the t-shirts sponsored by Duane Reade had on them at the Susan G. Komen Race for the Cure yesterday. Clever. You spend a lot of time reading people’s backs while you walk the 5k. 

Some people just have their registration numbers. 
Some have bright pink signs that read “In Celebration of” or “In Memory of.” 
Sometimes it’s one name. 
Or two. 
Or a list. 

I didn’t wear a pink sign.
My list was too long.
You guys know who you are.
It would have been a long list.

And then it would have said:
Mom.
Me.

Sometimes there is a photograph or drawing on walkers’ pink placards. 
Or a drawing of some hearts. 
Sometimes the writing is neat, businesslike, easy to read. Sometimes it’s in a child’s handwriting. 
Sometimes it’s hard to read, in magic marker or crayon. 
Sometimes there are stickers. 
Sometimes it’s a full name, 
Sometimes it’s more familiar,
“Aunt Cathy” or “Grandma Rainey.” 

It might be “Mom,”
or “Nana”
or “Bubbe.” 
“My sister.” 

There was a man walking in front of me for almost a mile whose bright pink sign said “In Celebration of ME.” Male breast cancer is not common, but it’s real, and it can be very aggressive. How hard it must be to be a man with breast cancer, I pondered. It’s almost always talked about as a woman’s disease.

There was a t-shirt that said “Pink is the new purple” on the back. We followed it for a few minutes, unable to figure out its meaning. We kept hypothesizing what it meant. Finally my mother ran ahead a few steps and asked the young woman in her 20s what it meant. My mom returned with the explanation:
Her sister had breast cancer. 
Her sister’s favorite color was purple. 
Her sister had died of breast cancer. 
She was walking in her sister’s honor; 
Therefore, pink was the new purple. 

There was the man we caught up to and quickly passed who did the whole route limping heavily, walking with a cane. “Wow,” Paige said, “that must be really hard.” 

“Yes,” I said, “That’s what this day is all about. 
It’s not about going the farthest distance. 
It’s not a marathon. 
It’s not about pushing your body to do the most it can do. 
They make this race a distance that lots of people can do. 
Even cancer patients who are in the middle of their treatment.
They want to include everyone: 
Moms with strollers, 
people in chemo, 
that man with his cane. 

It’s about raising money, 
not about making the walk too hard that people can’t do it. 
It’s about bringing people together.”

There were families. They forced me to struggle to keep composure. Dads with children. Usually they had matching t-shirts with pictures of a woman on them. They all said a woman’s name and then “Mommy, we miss you.” These were families grieving women who were taken from them. Families who had lost their queen to breast cancer.

Twenty-five thousand people were there yesterday. 
We were only four of them. 
Everybody had a story. 
My mother and I were only two of those breast cancer stories. 

We were united yesterday with a purpose: To keep our daughters, nieces, and friends from having to go through what we did. 
The distance wasn’t far to walk. 
The distance we have to go to find a cure is. 

I don’t personally know that I believe a cure is possible. 
I don’t think in those terms. 
I do believe that the advances we have made/are making in improving treatment are real. They help in terms of lower recurrence rates (fewer women get cancer again after having it once), higher survival outcomes (fewer women die from their cancer), and better quality of life. Even if we can’t find a cure, I believe that the more money we can get into the hands of scientists and foundations to help get women the care they need for their bodies and their minds can only be good. 

I wore pink and walked side-by-side my mother yesterday. 
I felt lucky to have her with me. 
I felt lucky that she was alive to be next to me after being diagnosed with stage III breast cancer. 
I couldn’t treasure her more than I already do. 
But this disease is one thing I don’t want Paige to have in common with us. 

It was a great day yesterday. 
Paige and I woke up tired this morning, but happy. 
Last night when we pulled into the garage I gently shook her awake. 
I told her how proud I was of her. 
I told her how happy Nana and I were that she had been with us. 
How great it was that we had made a memory like that together.
How proud she should be that she and I had raised about $7000 for Komen for the Cure. 

It really was more than just a walk in the Park. 

So much more.

…………………………………………………..

In fact, the last time I spoke to my mother-in-law before she was killed in a car crash was a phone call she made to tell us how proud she was of us for raising so much money for Komen.

But after that event my feelings started to change. My health was still affected daily by the aftermath of my cancer. I started to be bothered by staplers with pink ribbons on them and football players decked out in pink sweatbands. I started to dread October’s ubiquitous pink ribbons in the name of Breast Cancer Awareness Month. Facebook status updates with women writing in silly code about where they leave their handbag as a veiled hat tip to breast cancer “awareness” started to bother me more and more. Soon friends and I started a contest; we would snap photos of the craziest products we could find with a pink ribbon on it. When Komen partnered with Kentucky Fried Chicken and Mike’s Hard Lemonade, people started wondering about some of the choices Komen was making; after all, fatty processed foods and frequent alcohol use are risk factors for breast cancer. I wondered, too.

As I’m feeling worse about all of this “pinkwashing,” I learned that Komen was getting litigious against everyone from kids to business owners trying to raise money for cancer charities. Why? Because Komen said that only they could use the phrase For the Cure (a brief overview here). I love what Stephen Colbert said:

Anybody who knows me knows I am a huge supporter of the Susan G. Komen for the Cure foundation, which raises millions of dollars a year in the fight against breast cancer . . . So I’m giving a big Tip of my Hat to the Komen foundation for spending almost a million dollars a year in donor funds to sue these other groups. If they don’t own the phrase “for the Cure,” then people might donate money thinking it’s going to an organization dedicated to curing cancer, when instead it’s wasted on organizations dedicated to curing cancer.

………………………………….

By this point I was getting more and more annoyed with Komen’s corporate actions that simultaneously limited the language others used to raise money for cancer research while expanding its own pink grasp seemingly without standards. I stopped raising money for them. I felt the Komen organization was putting a happy face on breast cancer, and not paying attention to the often-unpleasant realities of life as a survivor (including recurrence). Survivorship isn’t always always smiles and pink ribbons. I wrote one of my most popular posts “These things are not tied with a pink ribbon” to capture some of those feelings:

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

 ………………………………….
By the time the Planned Parenthood de-funding was announced this week, I was already gone. For years, mail from Komen always went unopened, and a phone call asking if I would be re-registering a team for the Race for the Cure had been met with an emphatic No. I had left the cult of the pink ribbon, and it saddened me that I found it necessary to do so.

So this week I am grateful that I can look at my decision as the right one. When I saw Nancy Brinker (sister of Susan G Komen and the founder and CEO of Komen for the Cure) on MSNBC and how she engaged in what Barbara Boxer correctly termed “revisionist history” I was stunned (click here to either watch the video or read the transcript). This isn’t a woman who speaks for me. This isn’t a woman I want in charge of donations I make. This isn’t even, in my mind, a woman who is in touch with reality.

I’m allowed to vote with my pocketbook. I have dollars I opt to give to charity and Nancy Brinker, they don’t come to your address anymore.

Many people may be surprised this week that Komen isn’t everything they wanted from a breast cancer charity; I’m not surprised. I’m actually glad that this week has brought some of Komen’s actions to light so that others may decide how they want their dollars spent.
I think a better name for them is Susan G Komen For(got) the Cure.
*In October of 2012, the year I wrote this piece, I was diagnosed with a distant recurrence of my breast cancer… I have metastatic, incurable breast cancer. I have revised a few words in the piece to reflect my status. Since that time I’ve learned more about SGK’s history of ignoring metastatic patients in their print campaigns. Only a few years ago did they first put a person with stage IV disease in an ad, and even then they put a happy face on it, concentrating on the woman’s hope and future. That woman has since died from metastatic breast cancer. Rather than educate about the only type of breast cancer that actually KILLS (and was the cause of death of its namesake, Susan Komen), SGK has opted to again pinkwash the reality of this disease.
Some have asked where I think donations should go. Not enough money goes to research into metastatic breast cancer and advanced disease. I have established a fund at Memorial Sloan-Kettering that is earmarked for this research. You can see my page here for it. The money goes to research. Another good place is Metavivor.

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Half a Life by Darin Strauss

January 13th, 2012 § 4 comments

Today’s post is one of the rare ones that discusses a book I’ve read. I’ve previously written about Dani Shapiro’s Devotion and Katie Rosman’s If You Knew Suzy. Today I share some thoughts I have after reading Darin Strauss’s memoir Half a Life. The book won The National Book Critics’ Circle Award. If you’d like to hear some excerpts, you can listen to an NPR podcast here. It’s gripping radio.

I’m not a book reviewer, and this post isn’t a review; I consider it more of a response piece. Half a Life touched me in many ways and I still find myself thinking about it weeks after closing the cover.

One reason I like to write about books is because our reading of them is so personal. We bring our own experiences to bear on an author’s words; passages which seem to have been written just for us may go unnoticed or unappreciated by others. Reading is a solitary activity, yet we are a community of readers. I welcome comments about this book and/or the general topics.

………………………………

I think the Zilke family is lucky.

You might think that is a crazy statement if you know the story of how more than twenty years ago their teenage daughter Celine suddenly jerked her bicycle across two lanes of traffic and into the immediate path of fellow classmate Darin Strauss’s car. He couldn’t hit the brake in time; in truth, there was no time. Whether or not Celine intended to die on that day remains a mystery, we will never know what caused her to swerve. But die she did, with Darin behind the wheel, on that road, on that day, at that moment.

It wasn’t Darin’s fault; it could have been anyone in that particular place at that particular time. If his shoe had been untied and he’d taken a moment to tie it, if he’d forgotten his wallet upstairs, if he’d decided to use the bathroom one more time before heading out with his friends for a round of mini-golf, if… well, if anything… things might have been different.

If games are so common with grief: If only _____, things would be different. We create counterfactuals in our minds, imagining an alternate reality to the one that we just don’t want to accept. We hide away our truth, conceal the reality of pain. Darin did this for half of his life. For all that time he felt the pressure to live his life for two people; to make his life special, meaningful, and worthy of the fact that he lived while a schoolmate did not. Although Celine’s family originally absolved him of blame (and he was never criminally charged after the accident), they later sued him, settling out of court.

So why do I think they are they lucky?

Well, you have to know a little bit about me, and about my grief. If you’re a regular reader you know that my mother-in-law was killed in a car crash (I don’t ever call it an accident, unlike Darin’s case) when a man was driving in the wrong lane on a Wyoming highway in 2009. He was trying to pass an oversized load and was alongside that load at highway speed around a curve. His view obscured by the load, he didn’t know there was a car carrying my inlaws directly in front of him. The newspaper account appears here.

My mother-in-law was killed instantly; my father-in-law, seriously injured. The driver of the other car was charged with the misdemeanor charge of vehicular homicide and later sentenced to 90 days in jail. My account of that heartwrenching day and my visit to the crash site appears here.

Bruce Carter, the man who killed Barbara, didn’t say a word at the sentencing. He never said he was sorry.

I wonder if he thinks about her. I wonder if he thinks about us, the ones left behind.

I think the Zilkes are lucky because now they know. They know Strauss’s grief, some of his thoughts, his emotional shift from guilt to regret. Celine’s parents don’t need to worry, as I do, that their loved one has been forgotten by the person who took his/her life. Strauss’s agonizingly honest description of his thoughts about his actions and their aftermath resonate because they are so well-analyzed. Though the loss of a child in an accident is difficult, perhaps knowing that Celine’s life became a litmus test for so many events in Strauss’s own life would be a speck of reassurance. As Strauss grows older, Celine’s memory becomes his partner in a 3-legged race, bound together, their lives pulled awkwardly into tandem. I think the worst thing is to be forgotten. With this analysis of his life in the last 20 years, Strauss documents the changing nature of his grief.

……………………….

The theme of living one’s life for two people– of making his life “count” for two after the accident is one that is especially intriguing. Eventually Darin realizes this is impossible. As a high schooler he had reflexively promised Celine’s mother that he would make his life count for two, but this is the knee-jerk automatic response of a young person agreeing with something he doesn’t understand. Just like the ineffective shrink who pigeonholed Darin’s responses (ultimately making therapy a worthless endeavor), Celine’s mother obtained the answer she wanted from a person unable to fully understand what he was agreeing to. In a similar fashion, when a child dies, a sibling often feels he/she now has to carry the added weight of the unfinished life of the deceased family member. This psychological burden can be overwhelming.

We become responsible for others in many ways– as their friends, siblings, children, and especially as parents– but we do not truly understand these obligations when we first enter these relationships, most certainly when we are young. Growing into the recognition and acceptance of these responsibilities is part of the process. In so many ways we are wholly unprepared for the roles we step into both personally and professionally.

Others had been quick to forgive Darin– to tell him it couldn’t have happened any other way. Like the legal standard of the “reasonable man,” Darin had passed the test; there was nothing he could have done to avoid hitting her. However, his own timetable of forgiveness was much longer. While others instantly granted it to him, it took twenty years for Darin to forgive himself.

………………………

Regret and guilt play a large role in Strauss’s book, I did often disagree with his frequent interchangeable use of the terms. Regular readers may remember the guest post my mother (a psychologist specializing in grief and loss, death and dying) wrote about the difference between guilt and regret (full post here). I have certainly come to accept those distinctions and to use them accordingly:

People use the word “guilt” more often than is appropriate. Improperly using the word “guilt” can result in unnecessary emotional distress and harsh self-criticism. The word “guilt” refers to something you did, something which you feel you shouldn’t have done because it was morally or legally wrong. But what if the experience you feel guilty about was not something you caused or had control over? Then you would feel regret, not guilt.

Througout the book Strauss uses the terms interchangeably. He ends up with a painful stomach disorder requiring surgery. He later suffers from IBS and then CPPS (chronic pelvic pain syndrome) summarizing, “That’s the force of guilt for you.” I’d argue that it’s regret he feels; the accident wasn’t his fault. I wonder if Strauss would describe the book as I do, one which documents the evolution from guilt to regret; a journey toward making peace with the fact that things couldn’t have been different on that day.

I couldn’t help but wonder if counseling could have helped him see his actions in the proper light and helped to relieve some of this literal gut-eating self-criticism he’d been experiencing for years. At various points, Strauss believes Celine may have committed suicide, there are clues that this may have been the case. In the end, the only emotion Strauss is justified in feeling is regret; he writes, “Regret doesn’t budge things; it seems crazy that the force of all that human want can’t amend a moment, can’t even stir a pebble.”

Given my upbringing, I couldn’t help but be bothered by the lack of good psychological support for Strauss after the accident– could an insightful therapist trained in grief counseling have helped him negotiate some these feelings? Strauss says in a footnote, “I’d started going to therapy… though not (I really don’t think) as a response to the accident. I’d gone with pretty boilerplate stuff: your typical mid-thirties complaints… my therapy attempts had always been near-misses, fizz-outs if not outright failures.” A psychologist specializing in grief would have certainly been able to show that while Strauss may not have himself seen that he was seeking therapy as a response to the accident, it certainly could not be removed from his problems. While the problems in his thirties may have been boilerplate, the accident which haunted him for twenty years until that point was not.

……………………….

Writing about grief, regret, shame, and inner turmoil can be difficult. By their very nature our most personal and private thoughts can be difficult to express. However, they can also be the most rewarding to document, for these are challenges most people face at some point in their lives. The road maps we have for navigating life’s challenges are some combination of our own instincts, observations of others, and advice along the way.

I would think Strauss has heard hundreds, if not thousands, of stories since he finally began sharing his own. Tragedy invites sharing, camaraderie. I have found a similar experience with cancer; there is a natural tendency for others to connect and say “I have been there too.”

………………………….

Strauss is now a father. I wonder how Celine’s death will impact his next twenty years. Will he be more safety-conscious? What will it be like the first time his sons drive a car? Ride a bike on a busy street? How will he navigate parenthood differently because of this experience? And what are the triggers now for making him think of Celine? There must certainly be a pattern to those. Perhaps because therapy was ineffective in his youth, I was left wondering if parenthood will cause some of these unresolved emotional landmines to crop up yet again.

While time has a way of allowing us to move into a different stage of grief where we can go through minutes, hours, and days without being consumed with emotion, the feelings are always there, just below the surface, ready to rise at a moment’s notice. We can’t possibly always know what might trigger the flood, but it will come.

I started this post saying the Zilkes are lucky; they have a window into the mind of the person who accidentally killed their child. My own unanswered questions about Barbara’s death certainly affected my reading of this book. If I can’t have my own answers, I wanted to read Strauss’s. The truth is that we have to find our own answers, our own ways of weaving experiences into the tapestry of our lives so that we are resilient for what is yet to come.

I really enjoyed reading this book and grappling with some of these difficult questions as I read. The themes of death, regret, perseverance, responsibility, and decision-making are endlesslessly fascinating to me.

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Bye-Bye Grandma

December 19th, 2011 § 12 comments

One of the things that still astounds me about grief is how it only takes a moment to be jerked back into its grasp, even years after a loved one has died. It still happens to me with Barbara. I’m going along, minding my own business, and I see something, hear something, touch something and it reminds me of her. And it hurts just as much as it did two years ago when my mother-in-law died in a car crash.

Two weeks ago I walked through the Christmas decoration display in a tent at a local store. I was looking for outdoor lights and was feeling like a child mesmerized by all of the lighted figurines and trees. They had music playing and it wasn’t until I stepped further in that I really heard what it was: it was a boys’ choir singing Ave Maria. That’s all it took as I silently cried while listening to those pure voices sing one of Barbara’s favorite songs.

Our senses betray us, provide the conduit to those places in our memory we think are closed and safe. I’m not sure I’ll ever be safe. I think we stay vulnerable, sensitive, fragile. That’s what happens when you really love someone.

………………………………………………………………

October 6, 2009

The moments catch me off-guard,
like my brother used to do
when we were kids.

He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.

He would leap out,
scaring me,
terrifying me,
and I would scream
and shake
and cry.

That’s what these moments do:
they make me
scream
and shake
and cry.

Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.

“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”

And so we cried.
Together.
And we talked.
Together.

Tonight
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
emotional assault.

I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.

I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.

But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”

There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.

I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
waiting,
lurking,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.

And so I acted just like I did when I was a
child and my brother scared me.
I screamed.
I shook.
And I cried.

I vowed not to let my guard down like that
Again.

I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.

And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.

It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.

One day
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.

Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…

It makes me want to
scream,
and shake,
and cry.

 

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Dealing with the topic of death

December 14th, 2011 § 15 comments

My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.

They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.

Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.

When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.

I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.

I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic

And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.

Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”

What if they didn’t get it all.

What if the chemo doesn’t work.

What if the cancer comes back.

What if I get another (worse) kind of cancer from the chemo.

What if I die.

No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).

I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.

I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.

Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.

Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.

Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.

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Children grieve differently

December 2nd, 2011 § 4 comments

I’m working on a new piece about grief during the holiday season, but really want to re-share this short post for those who missed it. I actually re-read it from time to time to remind myself of a valuable insight I had with two of our three children. This was originally written two days after their grandmother was killed in a car crash in 2009.

……………………………………………………..

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

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The importance of open-ended questions in cancer and friendship

November 28th, 2011 § 14 comments

This is still one of the most important posts I’ve made. One of the ways you can be a good friend to someone going through a difficult time is to use open-ended questions. In this way, you are not projecting your own feelings onto them; neither are you assuming what feelings they are having. Trust me: they’ll appreciate it.

…………………………………..

There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.

It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.

One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.

As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.

A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.

What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”

The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.

But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.

Maybe the battle is not really with cancer. Maybe it’s with myself.

But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.

You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.

Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.

Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”

An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.

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The Fabulous Beekman Boys come to town

November 20th, 2011 § 0 comments

Last week Darien was lucky enough to have the Fabulous Beekman Boys (Dr. Brent Ridge and Josh Kilmer-Purcell) come to do a book signing at the Darien Library. My friend Aimee did a great blog post with more pictures on her own site but I wanted to share the picture she took of the three of us.

 

 

 

 

 

 

 

I love the photo! Brent and Josh have a farm in Sharon Springs, NY and their business is based there too. When they found and fell in love with the historic hotel/farm, the two men rearranged their lives to make their dream of owning a working farm come true. Brent left his medical practice in geriatrics to be at the farm full-time. Josh divides his time between the farm and working in advertisting and an author. They also had a TV show on Planet Green for a few seasons which chronicled their time getting the farm established. It’s wonderful and I always enjoyed watching it.

Josh has written two memoirs I Am Not Myself These Days (which is about his life as a drag queen) and the book about their farm, The Bucolic Plague. They have a new cookbook (The Beekman 1802 Heirloom Cookbook) which I love because the recipes are very simple and take advantage of foods that are in season. Every detail of the book is beautiful from the sewn pages to the cover which is designed to look like cheese cloth (their handmade cheese called Blaak is a favorite of mine. They make it in limited edition each year; its black ash rind is beautiful).

Josh and Brent were warm, entertaining, and funny… just as I thought (hoped) they would be. They are very involved with their fans on Twitter and Facebook and work very hard not only at the farm but also now on tour. Josh had just gotten off the train in Darien after a full day of work at his office in the city. They are tireless advocates for small town businesses and the craftspeople who make fine wares.

You can find them at www.beekman1802.com

here is a link to Aimee’s post about the evening: The Fabulous Beekman Boys

 

 

 

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Writing as an insurance policy: Katie Rosman’s If You Knew Suzy…

November 20th, 2011 § 3 comments

I am re-posting this piece now that Katie’s book is available in paperback. So many of these questions have been swirling around in my mind (Hmmm, I sound like Herman Cain?) while I try to decide whether to write a book. I think about why I write, what I can contribute, if there is an audience for the things I think about. I do write for you, my readers, and am so thankful you take the time to read what I say. But I also realize that I write for my children.

With the sudden death of my mother-in-law two years ago, I realize that “things left unsaid” are a heartbreaking prospect to me. When I was diagnosed with breast cancer nearly five years ago I made many decisions about treatment with the goal of living as many years as I could to parent my three young children. I chose more aggressive surgeries (including an oophorectomy) because I felt they would give me better odds at not only avoiding a recurrence, but surviving.

I realize as I age that my memory is fickle. I make endless lists of items I need to buy and things I need to do. Similarly, I find I rely on writing down my feelings so that I can look back and accurately remember the emotional experiences I’ve had. I worry that if I don’t, not only with those memories be lost to me, but also they will be lost for my children. In the crazy, hectic life of raising three children there is so much that goes unsaid, not only to the kids, but also to my husband. It’s not the actions of driving to football practice or tennis lessons that make me unique; anyone can do those tasks. It’s the thoughts in my head, the way I express them on the page, that are mine, and mine alone. If I don’t express my thoughts for someone else to read I cannot truly be known.

Most days I think my thoughts get lost. I have them here as an insurance policy of sorts. I write because it is my explanation of who I really am… to my children, to my family, and to my readers.

 

My discussion of Katie Rosman’s book, originally published June 24, 2010

There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.

If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.

Yesterday I sat transfixed reading Katherine Rosman’s book If You Knew Suzy: A Mother, A Daughter, A Reporter’s Notebook cover to cover. The book arrived at noon and at 11:00 last night I shut the back cover and went to sleep. But by the middle of the night I was up again, thinking about it.

I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died (on today’s date in 2005) from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.

Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.

I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.

I fear that what happened to Suzy will happen to me:

My cancer will return.

I will have to leave the ones I love.

I will go “unknown.”

My children and my spouse will have to care for me.

My needs will impinge on their worlds.

The day-to-day caretaking will overshadow my life, and who I was.

I will die before I have done all that I want to do, see all that I want to see.

As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.

Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.

It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way…  these are things that are “significant.”

I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?

Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?

Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?

If I don’t do it, who will do it for me?

And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?

My blog has the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:

If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?

What if you die without being truly understood?

Would that be a life wasted?

If you don’t say things for yourself can you count on others to express them for you?

Further, can anyone really know anyone else in her entirety?

After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly last fall. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.

Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.

I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.

I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.

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The decision to have a mastectomy (a response to Dr. Susan Love’s post)

October 24th, 2011 § 18 comments

Last week I was featured in an article by Liz Szabo in USA Today. You can find the story here. It was so much fun to see how many people saw the piece and for the kids to see themselves in a national newspaper.

The decision to have a mastectomy is not an easy one. Many men and women with breast cancer are thankful that their cancer is in a location where the tumor and surrounding tissue can be removed. When faced with cancer the reflexive reaction may be “just get the cancer out.” Statistics on recurrence and mortality rates with certain treatment options are handed over; a new language is learned, risks are assessed. How much risk is acceptable?

Dr. Susan Love, noted breast surgeon, argued in a blogpost recently that decisions by breast cancer patients to have mastectomies constitute “wishful thinking” on their part.

I agree with a few of the points Dr. Love makes, first and foremost that a mastectomy is not equivalent with a “cure” and that it does not ensure cancer will not recur. The problem is that her post really makes it sound like she is arguing with the decision.

In my case, I needed to have one breast removed; I opted to have the other removed as well.

Let me be clear: I had no delusions that a contralateral mastectomy was going to save my life or even prevent me from having a recurrence.1 I knew I could not control if my cancer would return. What I knew is that I could control how I treated my cancer, how I managed it, how I lived with it/after it. I knew there would be choices to be made. I knew cancer would not be a “once and done” thing for me. Survivorship means living with the ramifications of the disease, long after hair has grown back in.

I also very much agree with Dr. Love’s critique of food and eating particular items to prevent breast cancer or keep it from recurring. Dr. Love writes:

Finally, there is the wishful thinking about diet! The headlines scream that if you eat blueberries or drink red wine or don’t drink red wine you will not get breast cancer. We all want to believe this magic!

In reality, these findings come from observational studies, which show you a correlation, but cannot prove cause and effect. If you knew that all drug addicts drank milk as babies, would you really think that drinking milk as a baby could make you a drug addict? Of course not! That’s a correlation. It’s not cause and effect.  Exercise and maintaining a healthy weight have been shown to reduce risk, but what you eat seems less critical.

I agree that it may be tempting to cling to food as protective and/or curative. After all, when cancer takes so much from us, there is a desire to control the factors that we can — including what we eat and drink. I can’t tell you the number of women I know whom, at the time of diagnosis or the completion of treatment, decide they will eat “clean” or “healthy” and are right back in their old ways within months. During the acute phases of surgeries, chemotherapy, and/or radiation there can be a desire to take fear and channel it. By controlling what we ingest, we must be controlling what our body does and what happens to cells, right? Dr. Love reports that this is not as strong a case as one might think.

In my own opinion, if what we ate and drank were that instrumental in determining who got cancer and who had a recurrence, we’d have a cure by now. This is not to say that we aren’t learning more about risk factors and how certain foods can affect likelihoods of getting certain cancers. But for now, we do not have the scientific evidence to support such cut and dry statments about causality with breast cancer.

She shows little insight in her post into the mental reasoning that women make when deciding their treatment options. In fact, I don’t care at all for the way she chides the reader that a diagnosis of breast cancer “is not an emergency” and we should not make a deal with the gods to exchange our breasts for a clean bill of health.

In essence, she suffers from what she has just taken us to task for… equating correlation with causation. After all, just because women want to get rid of their cancer and they opt for a mastectomy, this does not mean they are making the decisions with that tradeoff as their guide. In fact, more often than not, it’s not even necessarily a reduction in breast cancer recurrence that women are after. There are other things they do not want to go through: mammograms, MRIs, biopsies, waiting for test results… and in my case, radiation on my left side which could cause heart damage.

I quote Dr. Love at length here:

We use wishful thinking all the time when making treatment decisions. When a woman is diagnosed with breast cancer her first reaction—understandably since she is scared to death!—is to do anything she can to insure that she is cured and make the fear go away. This fear (accompanied by wishful thinking) often leads people to do things that are not supported by the science.

One example of this is the studies that show that the number of mastectomies for breast cancer has been increasing in the U.S. each year. This is not happening because doctors are finding bigger tumors, or because mastectomy is a better treatment. It is the result of wishful thinking:  If I offer my breast or breasts to the gods, I will surely get my life back in exchange! If I have no breast tissue, I never have to go through this again !

In reality, a mastectomy never removes all of the breast tissue.  (I am a breast surgeon, so I should know.) The breast tissue does not come neatly packaged so that it be easily removed, which is why there always is some breast tissue left behind in the skin, around the muscle, and at the edges.  In reality, the local recurrence rate after mastectomy is 5 to 10% and the local recurrence rate after lumpectomy and radiation is 5 to10%! It is exactly the same!  And the cure rates are the same as well.

The critical issue is getting the tumor out with a rim of normal tissue and dealing with any cells that might have escaped—which is what radiation, chemotherapy, and hormone therapy are for.  It seems like the more radical the surgery the better the results should be . . . but that is really just wishful thinking!

The rollercoaster ride of cancer is not to be underestimated. Once a patient has a history of cancer, there will be frequent monitoring which brings not only potential additional radiation, but also the knowledge that if there is a question, more testing, including biopsies, will be needed. This emotional up and down means a woman must prepare herself each time that her cancer may have returned.

The main problem with Dr. Love’s piece is that she chides patients for making hasty decisions about their heath care. She reminds us that she’s a breast surgeon for thirty years, after all. And yet, with that experience and scientific background, she should know better than to lump women into one decision-making category and not divide them out based on demographic differences. Oncologists (surgical and medical) both make recommendations to patients based on many variables. Issues such as age, whether this is a first diagnosis of cancer, whether other cancers are in the patient’s medical history, grade of the cancer (how aggressive), what type (including hormone receptor status), and family history all come into play in medical decision-making.

Additionally, women may opt to have a mastectomy or double mastectomy for aesthetic reasons. Some of my initial decision to have a mastectomy on my right side was because I wanted my reconstruction to be symmetrical. After three children my breasts were looking their age. If I had a mastectomy on one side I would have needed surgery to reshape my breast to better “match” the breast that would be made with reconstructive surgery.

When confronted with breast cancer, patients get divided into two camps: there are those who want to do the most possible to treat it and there are those who want to do the least they can while still “taking care of it.” Factors of age, grade and stage of cancer, issues of radiation, reconstruction, BRCA-1 and 2 status and personality type all come into play. I personally believe that the ability to tolerate ambiguity and uncertainty is a key part of the decision-making process.

I don’t say I’m cancer-free: I never say that.
I never say a double mastectomy means I won’t get cancer again.

I know what I had.
I know what I did.
It’s about well-informed choices.

I know what might happen…
In the end, it’s not just about the statistics: it’s about the person.

 

  1. a contralateral mastectomy is the removal of the “healthy” breast. In my case actually ended up showing atypical cells that put my odds of getting cancer in that side well above normal [↩]

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USA Today interview: “Rate of ‘preventive’ mastectomy rising”

October 18th, 2011 § 2 comments

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For those of you who missed it yesterday, click here to the USA Today piece that Liz Szabo did about the decision for some women with breast cancer to have a mastectomy.

Everyone was so supportive in sharing publication day with me… thank you. The enthusiasm from Facebook and Twitter friends was truly touching.

The kids feel like celebrities! The photo on the cover page of the Life section was huge and the photographer captured a great laugh with the kids. The children were so patient during the 1.5 hour photo shoot.

I’m still working on a big post with more about the subject of mastectomies for breast cancer. I promise to have that up as soon as I can.

The response was overwhelmingly positive but there were a few criticisms of my decision. Here is what I reply:

I don’t believe that my decision to have a double mastectomy was a guarantee that my cancer won’t come back. There was much I could not control about cancer; some of that uncertainty still remains. However, how you treat your cancer, live with it, and monitor it are things you can control.

The shame is that when observers (many whom have no direct experience with cancer) decide to be critical of people with the disease, survivors may be afraid to tell their stories. Cancer awareness– true awareness– can only happen when men and women with breast cancer feel comfortable enough to talk about their experiences, their choices, and their disease without fear of being challenged.

I will continue to tell my story.

 

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Seth Mnookin’s Common Hour talk on his book The Panic Virus

October 12th, 2011 § 0 comments

Last week I returned to my alma mater, Franklin & Marshall College, to introduce a speaker at their Common Hour lecture series. My new friend Seth Mnookin was the featured guest and it was great fun to spend time with him during my visit. I had been introduced to Seth on Twitter by author Rebecca Skloot and knew he would be a great fit for the school’s series and suggested him to the Center for Liberal Arts & Society committee.

Seth spent time with students on three different occasions and I know everyone judged the tour a success. Seth primarily talked about his new(ish) book The Panic Virus which focuses on the irrational fear surrounding the MMR vaccine. I encourage you to read this book; issues of myth, fear, public policy, and expert knowledge are all at play in this fascinating and well-researched piece.

If you are interested in seeing Seth’s talk, including my introduction and the student question/answer segment, you can watch it by clicking here.

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Things were different, and not only the things

October 11th, 2011 § 8 comments

Regular readers of this blog know that after more than 49 years of marriage my parents have decided to separate. Over the past few months I’ve memorized a new phone number for my mother. I wrote her new address on a piece of lime green note paper and pinned it to my bulletin board. I’ve repeated stories about my children in the past few weeks twice– first to one of my parents, then to the other.

But six days ago I had the unique and unpleasant experience of driving up the driveway to the house they still own knowing my mother would not be standing out in the driveway waiting for me to arrive.

I was greeted by my father, instead, alone ushering me into my mother’s garage bay, the one she still uses when she has occasion to be at the house.

I walked inside and looked around; her desk in the kitchen was mostly bare, so too some of the walls in each of the rooms. The refrigerator held less than half of what it usually would; even my beloved Nespresso machine was no longer a fixture. I didn’t even go in many of the rooms. I didn’t want to see all of the changes.

Things were different, and not only the things.

Seeing my mother needed to be planned, coordinated. No longer was she only as far as a loud yell down the hall. No more could I stalk her around the house instigating conversation in an attempt to catch up on every little thing we’d missed since our last phone call.

That night I saw her new apartment and everything really started to sink in. By the next morning when I awakened I was overcome with emotion. I went downstairs to the kitchen and still half-expected her to be there, reading the paper, re-heating a cup of coffee that might have been put aside and gotten a chill. I still expected to see her the way I almost always did in the morning: dressed for the day, a full face of makeup save the trademark cherry red lipstick she would wait to apply until she had finished her morning cup of coffee.

For now phone calls via speed dial and texts would have to tie us together.

It wasn’t the same, of course. It couldn’t be. It can’t ever be.

I did keep a constant refrain in my head: my mother is alive, my mother is healthy. I am thankful for that.

She was not under the same roof I was anymore, but she still resides where she always has: in my heart, as close as she can be.

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Straightening Out (Tristan’s visit to Shriners Hospital last week)

October 9th, 2011 § 13 comments

Last Wednesday we took Tristan to Shriners Hospital for his checkup with his spine and hand team. He goes every 6 months for monitoring, in particular to make sure the tilt of his head has not increased. His spinal deformity consists of hemivertebrae (vertebrae that are only partially formed) and vertebral fusions (ones that are stuck together). This combination results in his case in something known as a disorganized spine.1

As an infant his head was quite crooked on his neck.

 

 

 

 

 

 

 

 

 

 

 

During the ensuing months, the tilt measured 25-30 degrees. The severity of the situation increased and Dr. Randal Betz told us if the curve progressed we would have to intervene with surgery to fuse the vertebrae in a straight position. His neck growth would be halted; while his body would mature his neck size would be that of a toddler. He would have no mobility in the neck after the surgery. We prepared ourselves for hearing the news.

We continued to monitor his growth. As he began to sit, and then walk we watched as the neck grew. His two hemivertebrae were growing in such a way that they were balancing each other as he grew. Had the pizza slice-shaped wedges been wide on the same side, surgery would have been inevitable. Because they were on opposite sides, this “z-curve” worked to his advantage. By the time he was a toddler his head was straighter.

 

 

 

 

 

 

 

 

 

 

Though his neck is short, and always will be, it has continued to grow. Physical therapy since birth has kept his muscles stretched and strong. Weakness on one side of his body is imperceptible.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This week his x-rays showed that the tilt once at 25-30 degrees is now less than 8 degrees. His eye sockets and lower jaw are almost even. The three points he has mobility in his neck are stable and should be sufficient to prevent extraordinary wear. He’s doing as well as he possibly can be, given his anatomical issues.

We next had Tristan’s appointment with his hand surgeon. He, too, was pleased with the results of Tristan’s three-pronged surgery last March (you can read about Tristan’s hand deformities here including his lack of a flexor pollicus longus muscle on his left side which makes his thumb unable to bend ). A flexor digitorum superficialis tendon transfer, ulnar collateral ligament reconstruction at the base of the thumb, and a 4 flap z-plasty of the thumb index web space were all successful. The large scar on his wrist is fading and it’s hard to believe it looked like this.

 

 

 

 

 

 

 

 

Here he was this week showing that hand with his upper extremity surgeon, Dr. Scott Kozin.

 

 

 

 

 

 

 

 

 

 

 

His left thumb will never bend, and the hand will be weaker because of it. He is a lefty, so it does affect his fine motor skills. But we continue to do hand therapy with him and it’s made a world of difference. Each Monday and Tuesday this 5 year-old is doing his therapy sessions at 6:30 A.M. before he heads off to kindergarten. That smile is always on his face. He never complains. He got a great report and we left Shriners happy and exhaling for another six months. We saw many friends there and it’s always like a family reunion. We’ve been through a lot together and we are grateful for their continued support and care.

I do want to mention one thing we learned at this visit. Shriners specializes in orthopaedic and spinal cord injuries; when children have traumatic spinal injuries, this is where they go. Tristan’s spinal surgeon told us there are two activities that they recommend children avoid because the risk of spinal injury is so great (this is for all children, even who do not have any defects): trampolining and riding four wheelers (ATVs). Those two activities have such a rate of injury that the surgeon does not allow his own children to participate in them. I share that information because it was new to me; we do not own either piece of equipment because Tristan is not allowed to do either but we were not aware that those activities were so dangerous to all children.

 

  1. These defects were not visible on ultrasound (the bones are too small during development and are not yet fully calcified) prior to his birth and it is not a genetic defect, so amniocentesis did not reveal the problem. It took months and many specialists to get a complete diagnosis on what his problems were. [↩]

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These Things Are Not Tied with a Pink Ribbon (Breast Cancer Awareness Month)

September 29th, 2011 § 12 comments

I hate October now. I don’t even like the color pink anymore. I get cranky in the last days of September when I start seeing everything from toilet paper to staplers colored pink and sporting a pink ribbon. It’s not that I don’t want attention called to the disease that affects so many people including me; it’s more that I think the focus has gotten misplaced. I don’t support Susan G. Komen Foundation anymore; I think they have lost their way. There is good research going on in many places, but I have come to question the line between commerce and research with Komen’s support of everything from Kentucky Fried Chicken to alcoholic beverages to its own perfume while simultaneously trying to prevent anyone else from using the phrase “For the Cure.” What happened to thinking we are all in this together, trying to achieve the same goals?

Last year I tried to think about awareness and what it means to me. I wrote this and it quickly became my most-read blogpost. It still describes how I feel, it still expresses some of the emotions I have.

…………………………………………………..

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

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Mommy guilt

September 27th, 2011 § 9 comments

September 29, 2010

Most of you probably read the title of this post and thought I was going to write about the guilt we may feel as parents over the course of our children’s lives when we can’t be there for every event they want us to attend or say no to things we know they might want to do.

But that’s not what I mean by “Mommy guilt.” Instead, it’s the feeling I have today because my mother is coming to visit.

I feel guilty because I have a mother who’s alive and many people I know do not.

I commented on Twitter this morning that my mother was coming for a few days. Author and friend Katie Rosman tweeted back “jealous.” Katie and I actually met because of the moving book she wrote about her own mother’s death five years ago, If You Knew Suzy. I wrote a blogpost about that book; in it I shared personal feelings about having cancer and what my legacy might be for my children.

But there was more.

Katie’s mom is dead. So is my husband’s mother. So are the mothers of many of my friends. And as I go through middle age this will happen more and more. And someday it will happen to me.

Every time I drive the fifteen minutes to the Amtrak station to pick Mom up (when she and my father don’t arrive by car here together) I think about the night I drove to get her at the train station the first time she came to visit after Barbara died.

When I saw my mother step off the train that night last year I almost had to look the other way: it was like looking at the sun.

The sight of her was
so bright,
so intense,
so welcome,
so wonderful,
that I almost had to look away for a moment.

The guilt over being able to see her step off that train and into my arms again overwhelmed me.

And so, today, when I see her again, I will hold her, kiss her, hug her. I’ll hug her for an extra moment and think to myself: this is for all of you. This is for all of you who have lost your moms and can’t do this simple act anymore. A way I can honor her and you is to appreciate these times we have together because I know there are so many who would give anything to have one of these moments with their mom again.1

  1. I should say that it’s not true guilt of course, it’s not my fault that my mother is alive while others are not. But especially in the months right after Barbara died I did have feelings that it was unfair, that I was so lucky. I wrote a piece about the difference between guilt and regret, and perhaps I should have re-written this one with different language. But I decided to keep it true to what I wrote at the time, for better or worse. [↩]

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I have a dream: to keep you safe

September 27th, 2011 § 0 comments

A previous discussion about inspiration and setting an example provoked my friend Laura to write to me, “If something ever happens to me where I have to dig deep to find that strength that you have found (and shown), I will think of you. Often. And re-read your blog. Often.”

This was the highest compliment and I appreciated those words immensely. Her words got me thinking.

So many of my friends have mothers who’ve had cancer. In college, my two closest friends, Alex and Deb, both had mothers who had breast cancer. Somewhere in that experience was an expectation for them that someday, inevitably, they would have it too.

It was many years before my own mother did. And then right on her heels, so did I. Before Alex and Deb did. And so, like my mother was for me (see Everyone Needs a Trailbreaker), I suddenly became the trailbreaker for my best friends.

I’ve gone through some cancer scares with friends and acquaintances over the past three years. I’ve sat in waiting rooms, taken phone calls, written emails, met with women in person. I’ve helped friends, strangers, and friends of friends.

When I was young someone teasingly called me a walking encyclopedia. Somehow it still seems true. My husband only half-jokingly shakes his head when he hears some of the questions people ask me. He sometimes says, “They do know you’re not a doctor, right?”

I know that I’m the first of my friends to have breast cancer. And have it “bad.” The whole nine yards. That experience comes with responsibility. I know that having cancer at 37 means that I will be that resource, that friend, that support system.

In the future, others will need me. Friends will ask me how to help,  what to do, what things mean.

There is a lot of pressure coming my way and I think about it already: what if I let them down?

That’s the kind of person I am.

I am already worried not only about getting through my own experience; I’m worried how I can help my friends if their time comes.

And statistically it will.
I’m worried who will be next.
I’m angry someone will be next.

I want to be the lightning rod.
I want to take in on for them.
I want to protect them.

Laura, I want to protect you:
I don’t want you to have to read my blog for strength.
I want you to read it because you want a window into a world you never have experienced. And never will.

That is my greatest hope, my greatest dream.

If I could sleep, that would be my dream:
To keep you all safe.

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Two Cents

September 19th, 2011 § 6 comments

Don’t tell me things happen for a reason.
Don’t tell me there is a plan.
Don’t tell me I’m supposed to learn a lesson from this.
Don’t tell me I’m a better person for it.

Tell me I’m strong.
Tell me I’m tough.
Tell me I did it well.
Tell me you care.

I don’t believe I was given cancer for a reason.
I don’t believe there is a master plan.
I don’t believe this is a test.
I don’t believe you only are given what you can handle.

I know I will learn lessons.
I know I will be stronger.
I know sometimes it is too much to handle.
I know sometimes I want to give up.
I know sometimes I thought dying would be easier.

I believe the power is in me.
I believe the power is in my doctors.
I believe in the power of medical science.

I believe unless you have experienced this, you cannot know.
I believe unless you’ve been there, you cannot give advice.
I believe unless you’ve felt it, you cannot judge.

I believe in the power of friendship and love to make the journey bearable.
I believe suffering is a process.
I believe in picking myself up and pressing forward.
Again.
And again.
And again.

I believe persistence pays off.
I believe in enjoying the gifts I’ve been given.
I believe many people will never understand.

It might sadden me, anger me, and frustrate me.
But in the end that does not matter.
I can only be true to myself.
I must be true to myself.

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The threadbare shawl (Missing Sara and Barbara)

September 16th, 2011 § 7 comments

September 16 is the anniversary of the death of two women I loved: my paternal grandmother, Sara, and my mother-in-law, Barbara.

Bubbe (Yiddish for “grandmother”)  died in her 80s, many years ago, after her health had begun to fail. She lived in Israel, and I did not have the opportunity to see her one last time before her death. In stark contrast, Barbara died only weeks after I last saw her, laughed with her, attended a family wedding with her. We had no earthly idea she would be killed in a car crash, of course, no time to prepare ourselves for hearing the words that rocked our world.

It was Open House at my children’s elementary school that night, and when the phone rang I didn’t recognize the voice. It was my husband’s voice, strained, hiccuping, sobbing. I didn’t understand at first; I couldn’t process what he was saying. In the same way I quizzically furrowed my brow when I sat in the basement of my daughter’s school in New York City and the principal announced on that first day as our preschoolers were upstairs, “A plane has hit the World Trade Center,” I again heard information and my brain responded with Does Not Compute.

Anticipatory grief is real. A diagnosis, a doctor’s report, an assignment to hospice– all are ways others try to prepare us for the death of our loved one. With each step, with each caution, with each added conversation we start to get our minds used to the idea that it may be the end. Like a threadbare shawl we continue to wrap ourselves in, each time we are comforted less and less by others’ words of reassurance.

When a death is sudden and unexpected, there is so much to get used to, so much to process. It is a task to make sense of the death, to integrate it into our consciousness. We must unbreak habits. I remember so clearly when my uncle Alan died, I still continued to pick up the phone again and again to share a piece of news. I had to keep reminding myself, “You can’t call him anymore.”

There are so many talks I have missed with these women. There are so many things I’ve wanted to show them, share with them. However, I am so lucky to have had them in my life for as long as I did.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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The house with the purple awnings

September 9th, 2011 § 10 comments

I drove by it thrice today: the little house with the purple awnings.

It’s on the street near my children’s school… within walking distance, in fact. It almost always has a For Rent sign out front and seems perennially in a state of slight disrepair.

Barbara used to pass the house and say, “Paige, I could rent that house. And then you and your brothers could stay with me and I could walk you to school in the morning.”

We knew she wasn’t going to rent it, but the idea of having her so close was so appealing to us all.

“Whenever the boys are giving you trouble you can just walk over here,” she’d say to Paige. “We could have sleepovers.”

Grandma’s little cottage we sometimes called it.

But then Grandma died in a car crash— almost exactly two years ago. When that happened, our dreams of seeing her often and Paige’s fantasy of having her in the little cottage died too.

And so, today — and every day when I pass the house with the purple awnings– I think of her. And miss her. And all of the memories we could be making in the little house with the purple awnings right now.

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Kindergarten

September 6th, 2011 § 11 comments

 

 

 

 

 

 

 

 

 

 

The house is so quiet… for the first time ever, all three of my children are out the door before 8:00. Tristan will have half days of kindergarten for the first two weeks so the change from preschool won’t be too dramatic. And yet, somehow with his backpack on, lunch pack clipped to it, it is different. He stands at the bus stop with a bunch of other children from the street; some of them were babies when we first moved here seven years ago. I see the changes in them after the summer more easily than in my own.

 

 

 

 

 

 

 

 

 

 

 

 

 

These are the psychological stretch marks I’ve written about before. These are the moments you know are monumental. Growth happens in fits and starts, not with smooth, sliding grace. This shift is simultaneously sudden and gradual in its arrival; I’ve been counting the days for the last month, but still the finality of its presence takes my breath away. With Tristan it’s different, his life thus far has been a challenge in many ways (background on Tristan and his physical abnormalities here). We’ve been a team, and worked so hard together. He will continue with OT and PT and need a few modifications in the classroom. But I know he’s going to be just fine.

I’m looking forward to writing again… the last month has been busy with things mostly of the unpleasant kind. But the routine of the fall, the schedules, the calendars give me structure. And with structure comes comfort. I can get through this rocky time. I can create the life I want, the one I need. I just have to keep trying.

 

 

 

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Limbo (waiting for Irene)

August 26th, 2011 § 7 comments

Uncertainty is my enemy. Preparedness is my talisman.

The nervous anticipation I have for unwelcome events is astounding. I sit, waiting for Hurricane Irene, asking myself repeatedly if I’ve done everything I can to minimize damage and inconvenience.

The unease is the same feeling I had waiting for chemo to start; knowing something is coming but not knowing precisely what to expect worries me. If I were told exactly what the hardship would be and its duration it would be easier. Blind movement forward can be a challenge.

My family will be together and I am sure we will stay safe.

I’ve done all I can. The eye is projected to pass within 5 miles of our house.

Hope you all stay safe and dry and out of harm’s way wherever you are.

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Tangled

August 19th, 2011 § 23 comments

Much writing comes from pain. Much of mine has.

I initially started this blog when I was dealing with the after-effects of my cancer diagnosis, chemotherapy, and surgeries. Later I wrote about my grief when my mother-in-law Barbara was killed suddenly almost two years ago. Back then — and now once again — there is a line I have always tried to walk between exploring my own feelings about my life and those in it while not divulging too much information about people who might not want to be so public with their thoughts as I have.

I haven’t posted much this month; it’s not just because it’s summer vacation time. I’ve been struggling with some issues and unsure how I can write about them while still allowing those I love their privacy.

I try to be the quiet wheel– you know, the one who doesn’t get the grease. With neighbor disputes, school and coaching situations, I do my best to be neutral, to just get along with people. When it comes right down to it, I just hate drama. I could never go on a reality show because my idea of a great day is one that most would term “boring.” I just want quiet and peace, a good cup of coffee and good health for my friends and family.

But lately that’s not possible and there’s a knot in my stomach all the time. And what I’m realizing is that it’s hard for me to write when I can’t be completely open and honest. It’s hard for me to carve out a part of my life and say “but I won’t touch that subject.”

The varied parts of our lives are intertwined; the strands are knotted. It’s one big heaping mess of togetherness.

And so, I want you to know I’m working on it. I’m trying to figure out how to navigate this time in my life.

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Perspective

August 10th, 2011 § 12 comments

I never wrote about cancer when I was diagnosed.
I never wrote about my body before the surgeon cut into it.
I never wrote about chemo when I was going through it.
I never wrote about dying when I was most afraid.

This morning I was angry at myself. Why didn’t I write during these times? Why didn’t I capture the raw emotion as it was happening? Why did I let this emotional gold mine slip through my fingers?

First, of course, was the pain. When I was in physical pain, I couldn’t be analytical. I couldn’t be intelligent. I couldn’t even be upright. When that pain dulled, and I started to feel better, I didn’t want to be self-indulgent. I didn’t want to think about me anymore. When I felt well, I wanted to be with my family. I wanted to give my children everything I had when I had it. I didn’t want to take time away from them, sit in my office, and write.

So I waited.

What have I gained from waiting? By writing about past experiences, am I living in the past, dwelling on it, and anchoring myself to a difficult stage of my life?

No, I quickly thought. I’m not.

In fact, it is only now that I can look at the past four years clearly. Now that the pain of recovery has shifted I can see it for what it was— for what it is.

Only now can I put the past in perspective. But what does “having perspective” really mean?

Being in the right spot makes all of the objects in your vision align properly, in correct proportion to one another. If the perspective is “off” it means you’re not viewing it from the right place.

Without perspective, your point of view is literally wrong.

What’s changed? The objects you are looking at haven’t changed. Your stance relative to them has. And in looking at the same objects from a different place, you see them differently. When we put life experiences in perspective, we are doing the same thing. By taking a few steps back, putting some distance between us and our experiences, we are better observers, we are more accurate.

My point of view was wrong before. When I was ticking off the boxes of surgeries, procedures, and treatments I was “too close” to them in space and time. Had I written about them then, I would have remembered more details of conversations, dates, and my surroundings. But that’s not what I feel passionately about. I don’t write about what it’s like to go through these things as they happen.

Gene Weingarten writes, “A writer has to figure out what that piece is before she can begin to report her story. Only then can she know what questions to ask and what things to notice; only then will she see how to test her thesis and how to change it if it is wrong. That’s what nonfiction storytelling is about. It is not enough for you to observe and report: You must also think.”

I love to write about what life is like after these events happen– after you live through them and come out the other side… how you go on after, and what it feels like when you look back.

I can see this part more clearly because my emotions are separated from the pain, from the chaos, from the shock.

For a moment I regretted that I didn’t write about all of this while it was happening. Now I know it was the right thing to do for me. Only now, with a bit of distance, can I put it all in perspective.1

  1. Other writers may have different motivations, different goals for their writing. In many cases documenting the events as they are happening is important. Writer Dani Shapiro says, of memoir, “It’s not what happened; it’s how you tell what happened.” There is a difference between journaling and writing memoir. Figuring out where you, as the writer, are vis-a-vis your subject matter is crucial– especially when that subject matter is yourself. [↩]

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Separation

August 2nd, 2011 § 27 comments

I thought they would always be together. I thought it would be until the end. When I look back over the things I’ve written about my parents, a constant theme is always how I can’t imagine them without each other.

And yet, this week, my mother moved into her own condo and began her life apart from my father.

Their dynamic just was not working anymore; six months shy of their 50th anniversary, they’ve decided to separate.

I’ve known for a few months, and the children know now too. In fact, as I write this, my parents are (together) spending a week with Paige and Colin as they do each summer. Nothing, even the decision to move forward apart, comes in the way of that this year.

I’m still a child. Their child.

I’m learning that no matter how old you are it affects you; age is not a protective shield against the hurt that can accompany such changes. Now 42, I have two generations to consider: my parents and my children. At the moment my parents’ health is good; I’ve written before about my mother’s stage III cancer diagnosis six years ago (she is in remission). But I confess, even on their healthiest days I play the “what if” game. I feel I need to always be thinking about the future, making sure I have an escape route. Like a stewardess pointing with a flourish to an exit in the forward cabin, I need to show myself that there is always a way out, a plan should something go wrong.

Even in the face of truly excellent health we’ve learned that life can change in an instant; after all, Clarke’s mother was perfectly healthy when she was killed in a car crash almost two years ago. I did not have a “what if” mentally written for that circumstance– how could I? But I have seen the way a tragedy can change a life in a split second. I think my confidence in what the day will bring has been shaken; I no longer believe that the day shall end as it began, life bookmarked in its progress.

I love my parents dearly; I am as close to them as a child could be, I think. We laugh, we talk, we share. I wouldn’t have it any other way. But the fact we are so close means this new chapter of their lives affects me deeply. How can it not? The very foundation of home life I have know my entire life is gone. I’ve been married for fourteen years; I am not a naive child who thinks wanting to make it work is enough.

And so, I program my phone with my mother’s new contact information; she gets her own entry now. I order change-of-address cards for her, and return address labels. Information now needs to go to two places. Anecdotes about the children need to be recounted twice rather than hearing my voice echo on speakerphone in the kitchen.

I support their decision– how could I not? I want them to be happy, and to achieve this goal they must live apart. But my knowledge that it’s what is best doesn’t make the bitter pill any easier to swallow.

I know a lot about grief and loss. I know that it takes time. This loss is something I’m dealing with, and will continue to, day by day.

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I think so too

July 14th, 2011 § 14 comments

Sunday will be the four year anniversary of the day I had breast recontruction surgery after cancer. My tissue expanders were removed once chemotherapy was over and my silicone implants were put in. Last week I had my annual visit to my plastic/reconstructive surgeon and received the all-clear to now have a visit every two years. It’s always gratifying when the time in between visits gets longer; I remember when I was there at least once a week during the reconstruction process.

“Did you know it’s been four years since your surgery?” my surgeon asked. Immediately he chuckled, “Of course you know that,” he said, realizing my mental calendar was certainly more precise than his– of course I marked the days off in my head.

Whenever I sit in a waiting room I am instantly transported to that place and time. I sit and watch patients walking in and walking out. I can tell by hearing what the time interval until their next appointment what stage of treatment they are in.

I sit in the chair, the same one I did four years ago.
It’s the same chair, but I am not the same person.
My body is not the same.
There is continuity in that chair.
There is a story it tells me.
I wrote this piece to the next person who sits in that chair.

………………………….
That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.

That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.

That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.

Those reactions you’re getting?
I’ve had them too.
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.

Those side effects you dread?
I’ve dreaded them too.
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.

That embarrassment you’re feeling?
I’ve felt it too.
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.

That fear you’re suppressing?
I’ve squelched it too.
Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?

That day you’re yearning for?
I’ve celebrated it too.
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.

That hope you have?

I have it too:
A cure.

Don’t you think that would be amazing?
I think so too.

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Still the Best Policy (being honest with your children about cancer)

July 5th, 2011 § 18 comments

I met a woman who told me something shocking.

It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.

What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.

Ever.

Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.

She never told them.
To this day– five years later– they do not know.

I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”

I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.

When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.

Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).

It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.

The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.1

If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.

I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.

To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.

Further, I think it’s a poor example to set for my children.

Lying,
covering up information,
and omitting important information are all wrong.

With rare exception, the truth is always best.

Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.

It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.

I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.

April 9, 2010

  1. She decided to tell them that she was Christmas shopping, not staying in the hospital to recover from surgery. She made up reasons why her torso hurt and why she couldn’t lift things. [↩]

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Part of the Problem (children and books about death)

July 5th, 2011 § 19 comments

Last summer I wrote the following piece about an upsetting interaction I had with a bookseller. It remains one of the posts that readers mention and still ask me about. The topic of children and death must be a touchy subject for most. I guess because I grew up with a mother who was a psychologist specializing in these topics I have never felt uncomfortable talking about them. Let me know what you think.

……………………………….

June 23, 2010

School is out for my three children. At ages 11, 8, and 4, the days are a hodgepodge of activities to allow them relaxing time at home with each other and some physical activity each day. No matter what their summer plans hold (sleepaway camp for 2 of them later this summer), I always make sure they each have a stack of books they are excited to read. Each night they go up to their rooms for at least 30 minutes before bedtime to read.

Yesterday we took a trip to my favorite independent bookstore. The tiny, jam-packed store has many employees who know and love books working there (all women, it seems). The children’s section is brimming with wonderful books for all ages. My favorite thing to do is bring the older children there and let them chat with a bookseller, telling what they’ve just read and whether they liked it or not. The clerks then can make suggestions about what the kids might like to buy/read next.

When we walked in it was apparent my favorite person was not there to help us. Another woman offered, and off we went to the back room. “What have you just read that you liked?” she asked my 11 year-old daughter. “Elsewhere,” (by Gabrielle Zevin) she answered. The woman immediately snapped, “That’s too old for you. It has death in it,” she said. She looked at me quizzically, silently chastising me for my daughter’s book choice.

“I don’t mind that she reads about death,” I said.

“I loved that book… it was so good!” Paige implored.

“It’s not appropriate for a 7th grader,” the woman persisted.

“I think it’s how the subject is handled,” I said. “We talk openly about death and illness in our house, and my daughter is obviously comfortable reading about it,” I pushed.

The subject was over. She was not going to recommend any books that had to do with the death of a teenager or what happens to that character after she dies. And so, she moved on to other books and topics. Eventually, we found a lovely stack for Paige to dive into.

As soon as we left I talked to Paige about what had happened: how the bookseller had steered her away from reading about death and pushed her to “lighter fare.” I told her that I disagreed with this tactic, and fundamentally think it reinforces a fear of death and discomfort with talking about the subject.

While I believe that a teenager’s obsession with death can be a signal of some larger emotional problem, I do not think that reading novels where the main character dies is inherently a bad idea for a mature reader. After all, so many of even young children’s favorite characters in television and movies have absent/dead parents; Bambi, Max and Ruby, and countless others have significant adults missing from their lives.

I don’t believe in forcing children to deal with the topic of death in reading until they are ready. I do believe parents are the best arbiters of what information and topics are appropriate for their children. But if a child is comfortable in reading books where a character dies, I believe it’s healthy for the child to do so. As a springboard for an honest conversation about death, it can even be extremely useful in beginning to have conversations at home about it.

Paige’s grandmother was killed instantly in a car crash in the fall of 2009. She learned that the death of a loved one can greet us at any time, whether we are prepared for it or not. By trying to steer my mature child away from the topic, the salesperson contributed to the emotional shielding that makes death a topic that so many individuals (including children) have difficulty thinking and talking about.

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Some thoughts on Katie Rosman’s “Why Friends Help Strengthen a Marriage”

July 3rd, 2011 § 4 comments

Katherine Rosman’s piece “Why Friends Help Strengthen a Marriage” in this week’s Wall Street Journal is an insightful look at some ways in which friendships serve as additional support to the ever-challenging marital relationship. Noting that modern times have uprooted many from the anchor of their families, Rosman identifies that friends have become our “family of choice.”

Making friends with other couples is important, not only for practical and social reasons but also because they strengthen our own marriages. Rosman explains, “[A group of friends and I] all agreed that friends help you gather perspective on your relationship to your spouse: When you’re inside a marriage, it’s easy to focus on the points of friction and the minutiae of daily life.” Therefore, friends serve as a buffer, a release valve to ease tension.

As I was reading, however, I began to think of ways in which the opposite could be true. (I should note that I agree with everything Rosman says. Many/most of our own Saturday nights are busy with dinner plans with friends, people my husband and I both enjoy being with. I think it’s not easy to find couples where all four individuals truly enjoy each other’s company. Clarke and I treasure these friendships and really enjoy spending time with the people we care about. I do think it helps our marriage to be with other couples and to see how others interact. The “perspective” concept is vital.)

Here is a dynamic where I think the opposite could be true; that is, friendships with other couples could undermine the marriage:

You go out with couple A and see how they interact. Perhaps one spouse speaks really nicely to the other, compliments him/her in front of others. Or at dinner one spouse doesn’t talk too much and gives the other time to talk. One prompts the other with things like “Tell that story… I love when you tell it. It’s so funny.” Couple A spends time together, helps each other, and/or travels together. While they aren’t perfect as a couple, (who is) they are generally respectful and happy.

Now, Couple B sees this relationship. One person thinks, “Wait a second. Our marriage isn’t like that. Is that what it could be like? Why doesn’t my husband/wife talk about me that way or help me out. Maybe I could do better? Or I would rather be alone than be treated like this if I see some other people have these types of warm and supportive relationships?”

Suddenly, there is a comparison, a reference point. It is precisely this comparison component of friendship which can often be destructive. You might do the comparison on your own, or in a one-on-one chat with a friend (“How does it work in your marriage?”)

Besides comparison, another potential wedge can be introduced into a marriage with critique. Most often, we just need friends to listen. However, sometimes we ask for or they feel compelled to offer opinions, advice, and criticism. In our loyalty and love for our friends we may advise them “you know, your partner doesn’t treat you as well as s/he should.” What we take as normal, tolerable, average, a friend may plant the seed of doubt. In an effort to be supportive they may be “bashing” the spouse. “You could do better,” may be proffered.

I think Rosman’s scenario works but until a tipping point. When all of the couples are happy, (or at least have a similar sense of dissatisfaction) and the disagreements in the marriage don’t escalate, the friendships serve as buffers, releases for some of the frustrations that inevitably accompany two people in a long-term relationship. However, the critique and comparison can ultimately cause trouble. The tolerance for frustration may change as the number of years of marriage increase.

Finally, what happens if one of the couples eventually splits? Not only does that breakdown affect the dynamic of the foursome, (couples will be forced to “pick sides”) but it also serves as an example of how marriage can go awry. “If it can happen to them it can happen to us” may be a question difficult to dislodge. If comparison results in the opinion that their marriage was as happy as your own, the implications for your own long term success may eventually be called into question as the years go by and more and more couples split.

Comparison, critique, and divorce are three ways in which friendships may undermine our own marriages.

I really enjoyed reading Rosman’s piece; once again she has brought a fascinating topic to the page, one that many of us deal with in our daily lives.

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Tipping Point

July 1st, 2011 § 28 comments

Okay, so today’s post is something totally different. We’re going to play, “What would you do?”

Clarke came home early for the holiday weekend. As he walked in the door the phone was ringing. I answered it and it was the local taxi company. The man on the phone said he had Clarke’s wallet and told me where we could pick it up. Clarke went back to the train station and retrieved his wallet. Later tonight I asked if he’d tipped the man when he picked it up… in essence giving him a finder’s reward. Clarke said the man hadn’t actually found the wallet; a third person had turned it in. Had the man been the one to find the wallet, he would have given him a reward, he says.

“But the taxi man still could have kept it and not called you,” I said. I thought he deserved a reward, or at least the offer of one. Taxi man could have refused if he felt that doing the right thing was its own reward.

I think that it’s nice to acknowledge that not only did the man did a nice and honest thing, but he also saved Clarke time and money by rescuing his wallet, credit cards, and cash.

What do you think? Would you have actually offered a reward when you picked up the wallet? Remember, the man Clarke picked the wallet up from was NOT the man who actually found it and turned it in, just the one who made the call.

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Bilateral Damage

June 30th, 2011 § 12 comments

It’s not that I didn’t like my right breast.

It hadn’t really ever done anything “bad” to me, except for the few times when it wouldn’t keep up with the milk production of the left one during the months when I nursed my children.

I didn’t harbor any negative feelings for it. In fact, I didn’t think about my breasts much at all except to chuckle at the sagging that inevitably comes with middle age and three pregnancies.

But all of that changed with four words: You have breast cancer.

The cancer was in my left breast: I needed a mastectomy. But what about the “good” breast?
Note the popular lingo: the non-cancerous breast quickly becomes tagged as the good one– like a good child who behaves and does what it’s told, the non-cancerous breast has faithfully done its duty and stayed healthy.

The left breast?

Well, that’s the traitor.

I had a decision: what would I do with the right breast?

Keep it?
Toss it out in biohazard trash?

With four words, that part of my body became a liability. I didn’t want that breast anymore, thanks. I’d rather have no breasts than one. Mentally, it was much easier to me to part with both, not live the rest of my life in fear of what might be lurking in that tissue.

To be clear, surgeons and oncologists explained that in their opinion, my chance of getting cancer in the right breast was no higher than my chance of getting breast cancer in the first place; I wasn’t necessarily at increased risk of breast cancer on the other side.

But:

I had already been a statistical anomaly.
I had gotten cancer at 37.
I was BRCA-1 and 2 negative (but didn’t know it at the time).

In my mind I thought:

Go ahead and tell me that, but I don’t believe you.

And so I heard their words.
I understood their words.
But I didn’t believe them.

And time proved me right.

I opted for bilateral mastectomies. And when the pathology came back, there was abnormal tube proliferation and some cell dysplasia. Things were awry in my right breast even though nothing had shown up on the mammogram.

Now, yes, eventually I would have found the problems when the cell proliferation got large enough to be detected on a mammogram or MRI. And maybe my chemotherapy would have gotten these cells anyway.

But are you really going to take that chance?
I wasn’t.

Body parts become liabilities.

My perspective about my body has changed so much in the last four years. My body itself has changed so much too.

I’m not exaggerating when I say that, like aging itself, the side effects of removing my ovaries one year after my mastectomies has changed almost everything about my health as I know it.

I went to the kitchen just now and pulled out my binder of cancer records to double-check my pathology report to write this blogpost.

And there it says, quite plainly, that my cancer was 1 mm from the deep margin (chest wall).

One millimeter.

A hair’s diameter.
A grain of sugar.

It always takes my breath away.
A millimeter.

So many people link their happiness to pounds, or inches, or dollars.

Me?

I think part of my future might hinge on that millimeter.
I’m counting on it.
And moving forward.

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Grasshopper Grows Up (for my father)

June 17th, 2011 § 8 comments

I wrote this in 2009 for my father in honor of his 70th birthday.

 

I am turning forty, and I still call my father Daddy sometimes.

And when I do, my voice still catches in my throat.

I’m still his little girl.

I always will be.

 

When I found out I was pregnant with Paige, I remember Clarke saying,

“One of the great things about having a daughter is that she will always stay my little girl.”

He knew this from watching me with my father.

 

My father is strong, unflappable, and focused–

Things you’d like from a heart surgeon.

Daily in the operating room I know my father displayed strength under pressure. He had to.

But the greatest demonstration of this characteristic came not in his professional life, but in his personal life when his two girls—my mother and I — needed him.

 

In 2004 my mom was diagnosed with cancer.

Three years later so was I.

 

I am often asked if my dad took control of my medical care– if he took charge and told me what to do.

Those people obviously don’t know me very well.

After all, I am my father’s daughter.

Nobody tells me what to do.

Not even my father.

 

That’s how I knew I had earned his respect.

He didn’t take charge.

He met each of my surgeons one time.

He knew immediately I’d chosen well.

While he wanted to know every detail,

It was because he loved me, not because he questioned me.

He trusted me.

 

Finally I knew I had graduated.

Grasshopper had grown up.

 

He has always been my teacher.

I have always been his student.

Life with him has been a master class.

He was a tough teacher.

He brought out the best in this student.

 

That’s what a good teacher does.

He doesn’t ask.

You just know.

You want to do your best.

You want to impress him.

You want him to take notice.

You want to earn his respect.

 

It’s taken forty years,

But I finally feel I’ve earned it.

It wasn’t in school.

Or with my grades.

Or with a job.

Or by getting into a certain college.

It was, instead, in the school of life.

 

The way I live each day.

The way I move through the world.

The way I raise my children.

The people they are becoming.

The home I have made,

The challenges I have encountered.

And the tools I have used to meet them.

 

I learned these life lessons from both my parents.

A girl could have no better teachers.

 

A thank you to my parents.

You are my supporters,

My teachers,

My friends.

 

Mom and Dad:

Eternal gratitude.

I love you.


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A reaction to Bruce Feiler’s ” ‘You Look Great’ and Other Lies”

June 12th, 2011 § 32 comments

Cancer is not one disease and there is more than one way of coping with a diagnosis. While some patients research every aspect of their illness, treatment, and prognosis, others would rather have their physicians sift through information and chart a particular course of action for them.

While many people with cancer or other illnesses may agree on what they like to hear (or not hear) from friends, family, and acquaintances, Bruce Feiler’s New York Times piece “‘You Look Great’ and Other Lies” falls victim to assuming that just because it is true for Bruce means it’s true for all. While he does use “many” and “most” throughout the piece, his list is prefaced by “Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick.” If Feiler’s piece were a blogpost I might not feel the need to react in such detail; however, as a highly visible piece, I suspect there are many readers saying to themselves, “I say a lot of those things… was I really that wrong?” All day yesterday my Twitter followers were asking my opinion about the piece; they wondered if he was right.

I recognize that there is a lot of good advice in his piece, and I want to acknowledge how hard it is to write a short article about such an important and personal topic. I think that opening up this subject to a larger discussion may allow readers to see the variation in reactions: remarks are interpreted in a variety of ways by different listeners. Even the same remark may be interpreted as harmless one day and loaded the next; hard and fast rules are unlikely to apply.

Thus far on my blog I have resisted writing rules about what people should and should not say. Readers have forwarded many such lists to me for my opinion.1 At the time I was diagnosed, I was the first of my friends to have cancer; I didn’t have anyone I could ask for advice.

I was often annoyed with the comments people made. I felt some were just silly (“It must be nice to be able to have time to rest in bed during chemo”) while other comments seemed hurtful or downright rude (“Is your cancer what is going kill you?”).2 While I was frequently upset or offended by statements people made, I didn’t articulate a list like Feiler’s. Why? While I reacted negatively to some things people said, I still felt that in most cases their intentions were good. That is, they might have made comments that were not helpful, but they weren’t making them to be hurtful. They might have been nervous, naïve, or clueless, but they weren’t trying to be cruel.

While the hope is that people will think before they speak, saying “these are the things you must not say” will make people even more self-conscious. The danger is that people will do something even worse than the things Feiler mentions: they may remain silent and not offer any help or express any affection at all for fear of saying the wrong thing.

Many people don’t know what to say. It’s wonderful to have some suggestions of what you should say as Feiler does (and I think he’s spot-on with every one of those). The danger of criticizing in harsh terms is that every person you’ve interacted with then feels the need to ask, “Are you talking about me?” At that point you are put in the position of consoling those who should be helping you. Frequently I found myself in the position of comforting others about my own diagnosis or that of one of their relatives. My recommendation is to avoid telling a person with cancer about your friend or relative who either had it and has lived 20 years (implies their fears are unwarranted) or that a person you know died a terrible death (discouraging).

One main criticism of Feiler’s piece is that it makes no distinction of or allowance for social proximity. That is, the expectations we have for what others should say to or do for us varies in relation to how close we are to them. It may be reasonable to expect a spouse or best friend to clean your refrigerator but not for your child’s teacher to do so.

Now, on to more actual details of the piece.3

It’s interesting that Feiler assumes the offer of food is innocuous. He claims food was one of his great helps and implies that this is a safe way to offer help to those in need. I explicitly forbade food to be brought to my house. I didn’t want anyone spending time or money preparing or purchasing food that might not get eaten. One friend reported that while her son was being treated for leukemia, well-wishers sent so many lasagnas that her kids could no longer look at the dish after a few weeks of receiving them. Similarly, smells eminating from food can often be offensive during chemotherapy.

Feiler starts his list of helpful speech and behavior by outlawing the questions, “What can I do to help?” and “My thoughts and prayers are with you.” he tells readers, “Just do something for the patient… Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.” Gee, I’d like someone to do those things for me even when I am not sick!

These things are not only unrealistic in most cases (live far away, don’t have a spare key to the house) but also impractical. These sound like suggestions for close family and spouses/partners. Perhaps saying, “Where’s your to do list—I’ll pick something off of that” might be more reasonable. I don’t want anyone in my house, actually, and how can you know what to do unless you ask?

To me, asking “what can I do to help” is not the same to me as “Call if I can do anything.” His point is that it “puts the burden back” on the person who is sick to come up with a way to help. I predict most people have their mental “to do” list available and could reel off a few suggestions to those who would offer. Close friends can just “do” or  insist in a way that others can’t. I do agree with him that being more forceful about helping is the right way to go, just not to the degree he does. Taking children for playdates (phrased as “We’d love to have your child over, please let us/we won’t take no for an answer”) is a lot more likely to receive approval than, “What can I do to help?”

Further, those who are ill may take pride in being able to accomplish a task themselves. I wanted to be able to do small tasts to contribute to taking care of the house. It’s not realistic to think an acquaintance is going to march into your home and scrub your toilet; after all, it’s hard enough to get those who actually make the mess and live there to do it. Arranging for a cleaning service to come might be more helpful. Often it’s easier to allow strangers into the home than friends; and it could be done while the person it at chemo treatment, for example. (with care taken about fumes and smells that might trigger nausea). Offering to do grocery shopping or be available to receive an online grocery delivery might be good, too. There is a whole post I could write about suggestions for how to help a friend.

Feiler also outlaws “My thoughts and prayers are with you.” He writes, “In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending ‘thoughts and prayers’ are just falling back on a mindless cliché.”

First, I think this is an extrememly personal reaction. How a person deals with severe illness is highly charged. In my case, I don’t want your prayers under any circumstances. I don’t believe in God and I don’t want you to pray for me. I didn’t tell anyone not to do it; after all, it made them feel that they were doing something for me. However, it also smacked of illogicality; why pray now? The damage is done: I’ve got cancer. I don’t believe that your prayers will make the difference as to whether I live or die from it; after all, I am quite sure that the people who die from cancer every day have people praying for them, too. Feiler assumes again that what is good for him is good for all– not all people with cancer will find prayers comforting. It’s a bit confusing because he also says it’s something not to say; I’m not sure where he really falls on this matter.

Second, when someone says, “My thoughts are with you” (a phrase I use often and am not about to stop) I think it can be nice. When you live far away or don’t know someone well it can an expression said with genuine concern; when said to a close friend or family member it expresses affection while feeling powerless in such a terrible situation. I believe that to be true.

I counsel: empty phrases said without emotional authenticity are likely to fall flat with the recipient. But I think telling people not to say, “I’m thinking of you” is extreme.

I wholeheartedly agree with his #3 (“Did you try that mango colonic I recommended?”), #4 (“Everything will be o.k.”), and #5 (“How are we today?”): double emphasis on numbers 3 and 4.

Then we come to #6 (“You look great”). This is the one the title points to as “a lie.” One major criticism of the piece is that “You look great” is not necessarily a lie (and I believe the compliment most often is true). I think what Feiler is sensitive to is that we have no way of knowing if it is in our particular case that someone is lying or not. Even in the midst of terrible sickness it’s likely the speaker means “considering everything you’ve been through” which can still be an honest compliment.  Also, many people appreciate being told they look great, even if the truth is questionable. Some days it doesn’t take much to lift your spirits. In the piece Jennifer Goodman Linn said, “When people comment on my appearance it reminds me that I don’t look good.” She is convinced she looks bad and doubts the honesty of the comment. Why can’t it be that she does look good? Why isn’t there room to compliment anyone on how they are dealing with things?

As I see it the real core of the problem is that “you look great” might imply that “you can’t be that sick.” Observers are trying to reconcile the disease inside with the appearance outside. When pictures of Gabby Giffords emerged yesterday, for example, everyone including newspapers commented “how great she looks.” I did not. While I thought it, and believe it (I guess Ms. Linn would find that impossible to believe), I didn’t say it because I was not trying to undermine the seriousness of her condition. Just because she looks good doesn’t mean she isn’t terribly affected cognitively and physically by the aftermath of being shot in the head. Just like when your hair grows back after chemo and everyone takes this to mean you are “all better,” serious medical situations can be present even when not visible to outsiders.

I loved when people told me I looked good. I looked sick, of course. But the effort I took to put makeup on or compliments to how I wore a scarf to coordinate with my outfit were nice. On a day I felt sad I always loved a compliment.

The irony is that illnesses that are invisible can be harder to live with. “I know you are sick but you look so healthy” is not helpful. It’s always disconcerting when someone who “looks healthy” is diagnosed with a serious disease or dies suddenly. These situations strike fear in all of us because being healthy makes us feel protected. When someone looks like us but is concealing serious sickness it can make us feel vulnerable– but that is not the patient’s problem. I again revert to the advice that you should say what you honestly believe. I don’t think it’s always a lie and I don’t think it should be on the list of outlawed expressions.

“People reminded me that I had a free ‘No’ clause whenever I needed it,” said one person in Feiler’s piece. My advice: let those who need to use it do so. When a friend got her own diagnosis of breast cancer, she assumed she would easily be able to opt out of being a Girl Scout troop leader during surgery and chemotherapy time. Instead, she was not given a gracious “pass” and no one offered to fill her spot (that would have been one way to really help). Instead, “But you’re still going to be able to be a leader, right?” was the reaction that met her.

I totally agree with the suggestions Feiler makes for things to say (Don’t write me back, I should be going now, Would you like some gossip, and I love you).  I think there are more, but I think he’s got some perfect ones to start a list there.

Elsewhere I’ve asked readers to contribute the strangest/rudest things people said to them when they (or a loved one) had a serious illness. Some of the responses there are definitely statments I would caution people to think twice about saying. I also heard:

“Is it terminal?”

“What’s your prognosis?”

“It could be worse, you know.”

“Everything happens for a reason.”

“It’s all part of a larger plan.”

“Now that you’ve been through this you’re due for some good things to happen.”

“I’m sure it’s fine/I’m sure it’s nothing” (similar to Feiler’s “Everything will be okay”). And there are many more.

There is an anger that can divide friends and family once a person is diagnosed with an illness. “You just don’t get it” or “You wouldn’t understand” can be a common refrain whether silently or outwardly expressed. The same words spoken by a friend/acquaintance/colleague may be interpreted differently depending on the day or mood of the patient. I quickly learned that physical pain and emotional agony trumped all; I had little patience or care for others when I was hurting. I learned to withdraw during those times or only discuss it with those who did understand. My hypersensitivity was undestandable but not necessarily easy to be around. The desire to be understood is part of how the ill connect, attract, and cling to one another. The fact that most people with a serious illness can rattle off offensive or ineffectual questions or comments made to them means they are important.

Feiler’s piece struck me as one in which his feelings of “you just don’t get it” were overwhelming and raw. While much of the advice is good, in the end I am critical of him for the same reason I didn’t make such a list during treatment: if you go around telling people how what they did was so wrong all the time, and things they should never do, soon enough they won’t say anything for fear of disappointing or offending you. In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them. I guess I shouldn’t say that will work for everyone, but that’s what works for me.

  1. For those who don’t know my history, here it is in a nutshell: I was diagnosed with hormone receptor positive, BRCA-1 and 2 negative, stage II invasive ductal carcimoma of the breast 4 years ago. I had a double mastectomy with reconstruction, 4 months of chemotherapy, and an oophorectomy eighteen months later. I had 3 children at the time of my diagnosis, the youngest was 7 months old and had his own serious medical condition to deal with. [↩]
  2. While I may use the example of cancer in this post, Feiler and I both are referring to any serious illness. I refer to cancer because that is the most serious of the conditions I have had experience with. Insensitive comments are by no means confined to the diagnosis of cancer. [↩]
  3. While not Feiler’s fault, I’d like to question the title “’You Look Great’ and Other Lies”… what exactly are the other lies mentioned in the piece? [↩]

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Is Closure Really Possible?

June 6th, 2011 § 9 comments

The rest of my family is coming back today. After a week in Jackson Hole, Clarke and Paige and Colin will return tonight, just in time for Colin’s 7th birthday tomorrow.

The refrigerator has been really empty this week. With just a 2-year old and me, it doesn’t take much to keep us fed. So I took the opportunity this morning to clean out the refrigerator and freezer– really clean them. Take everything out, throw away all the junk, the ice cream that now is just ice crystals. I tossed all of those “placeholders” that you never eat, they just take up room.

As I sprayed a wonderful new lemon verbena spray on the glass shelves, I start contemplating this week. The last seven days were my week to recover from surgery (an oophorectomy), to get stronger, to close out my year. I know I made the right decision not to join my family in Wyoming this year. It’s been a reflective time, a time for my soul to be quiet and heal. I think it’s done that a little. I think another week might help. I’ve loved my one-on-one time with Tristan; we have a nice little routine going, and I feel like he’s grown up this week.

But as the new year starts, of course, we are pushed to reflect on ourselves, to make ourselves better in the next 365 days. We reflexively reflect on whether we’ve kept any of those elusive resolutions from the previous year. December 31st is supposed to bring “closure.” In the arbitrary distinction between one year and the next (after all, why is there really a difference between the last day of 2008 and the first of 2009 any more so than any other passage of midnight on any other day of the year), we are pushed to wipe the slate clean and start anew. As I cleaned the house this week, purging old canned goods, papers, clothing, and sprucing up the house I found I was instinctively doing this: “Out with the old, in with the new.”

This annual rehabilitation, then, is supposed to be psychological and physical.
Most of our resolutions are about ways we want to be better, inside and out: concentrating on the new and gaining closure on the past.

One of my dearest friends wrote to me in an email last week, “And yet, you can no more gain ‘closure’ on life-altering events than you can erase moments from your memory.” I read that sentence many times. It is beautiful, and true.

I remember well when my friend Alex’s father died of cancer almost 10 years ago. She was so busy with all of the things that needed to be done, the arrangements that needed to be made, and taking care of her mother who needed constant attention and support. I remember wondering when she was going to grieve. I worried that his death, and his absence from her life, would fester and haunt her.

As I scrubbed the refrigerator shelves this morning I realized that you never grieve the way you think you should.
No one really just sits alone and thinks about the tragedies that befall them.
It’s too painful, too powerful to take that in as one big gulp.
Instead, what we do is weave it into the tapestry of our consciousness.
We make it part of our daily life, quiet, but present.
Maybe at this time of year we reflect more than usual, and maybe that’s why the holidays are painful as we take stock of what we’ve lost during the year and what we’ve gained.
Where that balance lands says a lot.

A year ago I thought surely 2008 would be better than 2007. It really didn’t turn out that way. But I am doggedly optimistic even when I’ve been been proven wrong so many times. I do not believe that there is a “justice meter” in the universe that is going to now dump things on someone else and leave me alone for a year. But maybe as my own tapestry of consciousness keeps getting woven, it will be stronger and more resilient to keep me going this year.

At least I’m starting with a clean refrigerator.

originally written January 2, 2009. Modified June 6, 2011

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A Day Away (when people take their lives for granted)

June 3rd, 2011 § 10 comments

More often than not, cancer creeps into conversations with friends. New friends, old friends.
I don’t think I’m obsessed with it. I don’t have to talk about it. Why does it come up?
Is there a cancer radar?
Is it just that when cancer folks are together we let our guard down to share?
Do we want to compare notes and try to get information from each other?
Probably all of the above.

Here’s also where I think it comes from: talking about illness is grounding. It puts the emphasis where it should be. I have many friends who have family members who either have had or currently have cancer. We’re a club. There is a support we can provide for each other, a language we can speak. Stages, grades, blood counts, oncologists, PET scans, MRIs, tumor markers… and on it goes. I really think I should get credit for CSL… cancer as a second language.

I like people who “get it”; I find more and more that I am naturally drawn to them. I’m rarely surprised to find that new friends of mine have had some type of hardship in their lives.
Maybe it’s just that more and more people have “something” in their life story.
Maybe those are the people I gravitate to.
Maybe they are drawn to me (or the “vacuous people need not talk to me” sign I have on my back scares others away).

It’s not that I don’t like talking about shoes or The Bachelorette or movies. I do– a lot. And I actually do think they matter. It’s important to have a break from the heavy, serious stuff. Some people think that the small stuff is all there is– that it matters. Those people are hard for me to take.

One day, shortly after I was diagnosed, I sat watching my son take a tennis lesson. I was still numb and reeling from the news that I had cancer. I hadn’t started chemo, and was still awaiting surgery. I knew what I was facing: double mastectomy and chemo. But to the outside world I looked totally normal; no one would know what news I had received.

There were two moms sitting near me chatting loudly while their kids had their lesson. These were the days before the recession, when women in my town were flush with cash, and living high on the hog. They were talking about vacations. “I just can’t decide where we should go for vacations this year,” one said, “John has so many vacation days it’s going to be hard to use them all. We could go to Switzerland again. But that’s kind of boring. And there’s the Caribbean. But I kind of want to do something different. What do you think?” she said to her friend.

I know what I thought. I thought someone needed to hogtie me to the chair before I punched her out. That was a problem? It was one of the few times I really wanted to say “Lady, let me tell you about a problem.” But I didn’t.

Why?

Because maybe her mammogram was the next day.
Maybe she was a day from being told there was something suspicious on it.
Maybe she was a week away from having a biopsy.
Maybe she was a month from having a double mastectomy.
Maybe she was six weeks from starting chemo.
Maybe she was just about to learn the lessons I was learning.

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“Thank you” never gets old (Memorial Day)

May 30th, 2011 § 8 comments

Each year my letter to troops stationed overseas is similar. Each year I question whether I should write something new, if it’s “cheating” to say the same thing. In the end I realize that thank you never gets old, it never needs to be re-written. Thank you doesn’t have an expiration date.

This year we went to buy items for the care package drive sponsored by the Darien Little League. Volunteers collect supplies including toiletries, non-perishable food, and games and send them to soldiers far from home. While the supplies are important, and more than 500 boxes will go, the most important items sent are the letters. The letter I sent this year has the same theme: bravery– chance or choice?

May 28, 2011

Dear Servicemen/women,

My family and I are sending you some supplies on this Memorial Day Weekend. We want you to know that we have not forgotten you or the sacrifice you are making every day to be away from your own families and in harm’s way. It’s not much, but perhaps knowing you are in our hearts and minds will help.

Four years ago I was diagnosed with cancer (I am now in remission). When I was going through treatment, people called me brave. I didn’t deserve it. “Brave” was not a word you used about someone like me. I had gotten cancer by chance and I dealt with it, the best I could.

But soldiers? You are brave. You have a choice—you put your lives on the line after making a conscious decision to do so. You know the danger and you do it anyway. To me, that is true bravery, true heroism.

It feels good to say it, to confess it. I have been called a word I haven’t earned.

Seeing danger and making the choice to proceed anyway is precisely how I define bravery. We all find ways to deal with the fear of death. We know the uncertainty that lies ahead. We see the bravery in others before we will see it in ourselves.

What underlies bravery: chance or choice? Can both? Are we just hesitant to see the quality in ourselves? Are we just modest? Do we just act the way we need to, to get the job done?

I think when you choose to throw your hat in the ring, that choice counts for something. That makes you brave. That’s what makes soldiers heroes. Happy Memorial Day to you. And thank you for your continued service to our country.

 

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When daughters grieve the death of their mothers

May 25th, 2011 § 1,101 comments

A few months ago I asked my mother to share some thoughts on the difference between guilt and regret (A Psychologist’s Perspective on Guilt vs Regret, February 7, 2011). That post quickly became one of my most-read pieces. When I knew my mom was coming to visit this past weekend I asked, via Twitter, if anyone had any questions they wanted me to ask her.

One reader wrote:

My mom passed away six years ago, when I was 24, after a five-year battle with cancer. I’m getting married in a few months and I’m finding two things difficult: 1) going through a big life change, and the actual planning of the event, is making her loss feel much more at the forefront than I expected; 2) I’m struggling with marrying someone who didn’t know my mother and doesn’t understand (and honestly, not sure how he can, not being there) my grief.

My questions are: how do you help the new people in your life know the person you lost and understand the depth of your grief? And how do you deal with the new kind of grief that comes with entering a new phase of life?

……………………………………..

My mother, Dr. Rita Bonchek, spent her career as a psychologist specializing in grief, loss, death, and dying. She had some thoughts on the subject. I decided to add my own take on it; that perspective appears after hers.

……………………………………….
Dr. Rita Bonchek writes:

In American society, the topic of death causes great discomfort so people do not think about or discuss the subject. When the death of a loved one occurs, the bereaved are often encouraged to put the occurrence in the past. Freud felt that the mourner needed to ” let go” in order to move on. However, when Freud experienced the death of his favorite grand-child, he often expressed with great sadness that he would never get over the loss.

What is not appreciated about the death of a loved one is that “Death ends a life but it doesn’t end a relationship that lives on in the mind of the survivor.” Some studies have shown that mourners hold onto the relationship with the deceased with no notable ill effects.

A childhood death of a parent can be a devastating event. How the child grieves is extremely individual and based on the child’s age when the parent died, the cause of the loss, the quality of the parent-child relationship prior to the death, and the support system available both at the time of the loss and afterwards. If a surviving parent removes all items and pictures of the deceased and does not talk about him or her, the child is denied the grieving process. The secrecy and the inability to have a shared grieving between the child and family that shares the loss is a travesty.

The mourning for a mother never really ends. Even after many years while there may not be active grieving, there are what one child called “mommy-missing feelings.” And what does a mother provide for a daughter: support, advice, a significant person who can help and validate the child during development. No one else is so uniquely important to the child as a mother who helps her to form an image of herself. With this self-image, a daughter is helped to determine how to interact with the world and the people in this world. A daughter’s feelings, thoughts, hopes, desires and attitudes are influenced by a mother. But this mother does not have to be the mother who existed in real life but who is a mother who exists in the daughter’s heart and mind. This is a mother who is carried within a daughter forever.

When a mother-daughter relationship has  been strong and positive, a mother loves a child in a very intense and special way. A daughter will miss a mother’s protectiveness, loyalty, encouragement,  praise, warmth, and, as the daughter becomes a woman, an adult-to-adult friendship. There are special times in the developing daughter’s life in which the absence of a loving person is painful: graduation, confirmation, Bar/Bas Mitzvah, a wedding celebration, the birth of a child, etc. This is when the wound is re-opened.

Who the daughter was when her mother died is not who she was after the painful event. Every death of a loved one changes us and causes us to re-grieve the loss of other loved ones. Hope Edelman, in her book Motherless Daughters encourages women to acknowledge, understand and learn from the changes that occurred as a result of the early loss of a mother. It can take years. With reflection  and understanding of what was lost when her mother died, a daughter can, with greater sensitivity, become her own role model as she creates a strong family and friend network of her own.

…………………………….
I had the following thoughts:

Even though the death was six years ago, it happened to you at a time before marriage and/or motherhood. While not relevant to all women, these are often defining events in their lives. While you had your mother for your childhood, oftentimes daughters do not fully appreciate their mothers until they become wives and mothers themselves. When you no longer have a mother to admit “now I understand what you meant” or “I’m sorry for how I behaved as a child” it can feel that there is unresolved business at hand. Not being able to ask, “Is this how you felt on your wedding day?” or “What was your day like?” is difficult.

Of course, a wedding is one of these events that is tied to family. How can you possibly explain the ways in which these occasions make you miss your mother? As my mom said, it’s not just the relationship you had that you grieve, it’s the relationship you could be having now. There is no way to fill that void, no one can fill that space. I think that incorporating your mother and her memory into your ceremony may provide a way for her to be remembered and present during your wedding. Because your fiance did not know her, he will not miss her in this event. You will, however, as some of the guests at your wedding will too.

It’s a common misconception that talking about your mother or acknowledging her absence will “make people sad.” On the contrary, I believe that talking about her and her absence is appropriate. One way I think this is appropriate is to mention her in the wedding program and/or light a candle during a portion of the ceremony that names those who are “special to us but not here to share this day.” I have seen an acknowledgement of special friends and family who are deceased but remembered on this special day. A paragraph, properly worded, could mention your mother’s role in raising you, making you who you are today, and how you wish she were here to share this occasion. Similarly, wearing a piece of her jewelry or clothing (like a veil) or carrying her favorite flower in your bouquet might help you feel closer to her on the actual day.

Grief sneaks up on you when you least expect it; the reflexive reach for the phone is a hard habit to break. Both happy and sad events can make you miss loved ones. Every little thing reminds you of your loved one, the things you did and the things you had yet to do. You grieve the relationship you lost and the one you had yet to build. The relationship was truncated, and that cannot be fully appreciated by someone who has not experienced it.

I don’t know if you have shared a lot about your mother with your fiance, but I think it’s important to do so before you get married. I think it’s important to write about her and talk about her with him. He’ll never be able to understand fully, and he’ll never miss her since he didn’t know her as you did. But he does need to understand how important she is to you now even though she’s no longer alive. That may not be intuitive– although your mother died six years ago she is still a very important part of your life.

It’s important to say that not all of the memories surrounding your wedding would necessarily be happy; after all, weddings can be prime opportunities for mothers and daughters to clash. However, the pivotal moments of walking down the aisle, first dance, photographs, and so on can be especially difficult.

Sometimes when we grieve we don’t know exactly what we need, and in the end, no one can provide the “fix” for us — that could only happen if our loved one came back. Realizing that you don’t really know what you need all the time as you go through this is important, too. Something your fiance says might be incredibly aggravating one minute (a reminder that “he just doesn’t understand”) but other times the same thing may strike you as supportive. He’s in a tough situation because he’s trying to support the woman he loves on a day that is supposed to be one of the happiest days of your lives together. However, it has a component of pain involved for you. He needs to accept that dialectic and not try to gloss over or erase the pain that will accompany all of the happy days you will have together. He needs to know that grief will be a part of every happy event you will have in the future because your mother is not there to share it. The sooner he can accept that truth, the better it will be for both of you, I think.

I hope that some of these thoughts will help you in the months leading up to your wedding and that you can find a way to incorporate your mother’s memory into your ceremony. I know she will be in your heart and on your mind.

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It takes two

May 18th, 2011 § 16 comments

A few weeks ago I was talking with a friend about our blogs. She said that she never writes about her husband; some readers didn’t even know she was married. I don’t directly write about my husband Clarke often. I’ve written endlessly about his mother Barbara’s sudden death in a car crash in 2009 (if you want to read more about her, please click on the tag “Barbara” on the lower right of the page) but not about Clarke. Clarke is private, and I respect the fact that he doesn’t want to write or discuss topics that I do.

Clarke wrote a piece that I treasure. In 2009 he nominated me as a “Brave Chick” for a website that celebrated women who had tackled adversity (www.onebravechick.com). The interesting thing to me as I re-read the essay now is how much more has happened since then. We’ve had many medical and emotional challenges since this letter was written. I like to think that the seeds of strength were sown during some of these experiences.

I am re-posting this today not to celebrate myself, but rather to celebrate my husband. We are a team in this thing called life and I couldn’t do it without him. I hope I will get him back here on the blog sometime to write about some more of the issues we have dealt with; I think hearing it from his point of view might be helpful for some readers. But for now I will let his words sing, and hopefully honor him by doing so.

 

…………………………………..

“The bravest sight in the world is to see a great man (or woman) struggling against adversity.”
-Seneca

“Let us do our duty, in our shop in our kitchen, in the market, the street, the office, the school, the home, just as faithfully as if we stood in the front rank of some great battle, and knew that victory for mankind depends on our bravery, strength, and skill. When we do that, the humblest of us will be serving in that great army which achieves the welfare of the world”
-William Makepeace Thackeray

My wife Lisa and I met for the very first time at the George Foreman / Evander Holyfield fight in the spring of 1991 when, in a scene straight out of Rocky, a forty-two year old Foreman went the distance with the undefeated Holyfield. We met again at a Halloween party later that year and began dating. We got engaged in 1995 and married in the summer of the 1997. Over the course of our 18 years together and in particular the last three, it has become clear to me that my wife possesses more than her share of courage.

As with any 18 year period we have had our ups and downs together but mostly it has been up. We have three beautiful and intelligent children, loving and supportive families and great friends.

In the grand scheme of things, our life together was pretty smooth which is why I think we were completely unprepared for what the last three years have brought us. In August of 2006 we learned that our five month old baby boy was born with a condition that required immediate open heart surgery. He also had complex problems with his cervical vertebrae and the muscles of his hands that would require a significant ongoing investment of time and energy in medical care and therapy.

Since Lisa is at home with the kids when I’m at work, the day-to-day heavy lifting of running the house and managing the often crazy logistics of our lives naturally fall to her. In addition, because she is the medically savvy one in our family (her father is a surgeon and her mother is a psychologist), Lisa ended up quarterbacking and supervising Tristan’s care which included (and still does include to some extent) coordinating treatment with four or five different specialists (neurologists, pulmonary specialists, pediatric cardiothoracic and orthopedic surgeons, etc.) in three different cities. Juggling all of those competing priorities was extremely challenging and time-consuming. It seemed like fate was piling on hardship in January of 2007 when Lisa was diagnosed with Stage II breast cancer.

Lisa spent much of 2007 aggressively treating her cancer with a double mastectomy and chemotherapy. I’m sure many women who read your website are acquainted with the harsh reality of how tough a cancer treatment regimen can be on one’s body and, just as importantly, one’s psyche. I must confess that I wasn’t really prepared for what was to follow. Like many things, cancer treatment seems much simpler in the abstract or on television than in the messy reality of real life. It is a process where you are forced to make life-changing and often heartbreaking decisions while in possession of only limited information all the while dealing with the physical, mental, and emotional side effects of disease itself and the treatment. If adversity is the test by which character is revealed then I’m proud to say that my bride has passed her personal test with flying colors.

At least by the romanticized ideals of literature or history you don’t get to see real bravery very often when you live in Darien, Connecticut (braving the long lines at the local Starbucks doesn’t really count). However, there was something quietly heroic in how Lisa handled the myriad of issues she was dealing with in a thoughtful and calm (with some exceptions) manner all the while taking care of the thousand little details that go along with being a mom to a young family. No matter how much personal pain she was in, the kids’ lunches got made, their homework got done, their boo-boos got kissed, and their very real fears addressed and soothed even on the very worst days. Tending to young kids isn’t easy on your best day but being able to do so and face the world in the midst of cancer and chemo and all that implies is something else altogether.

Looking back, the amazing thing to me is how little impact the whole period had on our children; that speaks to how much of her energy and force of will Lisa put into ensuring that that was the case. We had lots of help from our families and our amazing group of friends, but at the center was Lisa getting up each day and doing her best to move forward with grace and determination (kind of like a 42 year-old George Foreman coming out of his corner, taking his licks and getting in some good shots of his own). In my book, that is all any of us can really expect of ourselves and defines what bravery is all about. When my test comes, I hope I do as well and face up to it with as much strength as Lisa did.

A friend whose wife had just gone through the breast cancer experience told me when I learned about Lisa’s diagnosis “the thing about breast cancer (pardon another tortured sports metaphor) is that you never get to spike the ball in the end zone and say you are done. There is always something else.” I thought I understood what he was saying at the time, but I appreciate it much more now. Although chemo ended in the summer of 2007 and her breast reconstruction finished shortly thereafter, Lisa has been dealing with the often frustrating regimen of drugs and side effects that come along with being a cancer survivor. While things are certainly better than they were, it has been a constant challenge and adjustment for both of us.

As I said earlier, one of the most difficult things about having cancer, even a cancer that is as common and well known as breast cancer, is that you really don’t have any idea what is ahead of you as either a patient or a spouse when you begin the process. There are reams of data and academic studies available but despite that fact, it is difficult to distill and digest all of that into a coherent picture as to what you as an individual (or the spouse of one) will experience.

As part of her life as a cancer survivor, Lisa has taken it upon herself to make understanding the long road of treatment, recovery, and being your own best advocate a little easier for women who will face the same challenges she did. She spends hours and hours speaking to women in our community who are just beginning the process about what she has been through in the hopes it will help them be prepared. As an extension of those conversations she began writing (and later blogging) about her experiences and feelings about cancer and posting them on the web. She sometimes writes clinically about the nitty-gritty medical realities of treatment and recovery which are based on her personal experiences, extensive research of the available medical literature, and her own conversations with her doctors.

Other times she examines the darker, emotional, frustrating, and deeply personal places that being a cancer survivor can sometimes bring you as young woman and a young mom. Her writing is often beautiful and poetic and is always thoughtful and enlightening. She puts it all “out there” for public scrutiny. She posts regularly under her own name to help her fellow women (our moms and sisters and daughters) understand and deal with a path that all too many of them will walk down at some point in their lives. I believe this is noble and selfless and courageous.

So as a very small and modest way of acknowledging her daily efforts and recognizing her achievements, I would like to nominate Lisa Adams (age 39), loving wife, wonderful mother, caring friend, talented writer, and strong cancer survivor to be a featured brave chick. I would invite those members of your community who are interested to check out her writing at lisabadams.com.

Thanks for your time and dedication to Brave Chicks everywhere.
Clarke Adams

July 7, 2009

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A bookmarked life

May 13th, 2011 § 9 comments

One of the defining features of childhood is innocence.
As children we don’t realize that things change. We think the way that things are when we go to bed at night is the way they will be in the morning. We put the bookmark in our lives and expect everything to be the same when we return to it.

Of course, as we grow we realize that’s not true.
That it can’t be true.
That’s not how things happen.
That’s not the way the world works.

And what do we say when someone still believes it? We say he is being childish.

Oftentimes I wish I could retreat to childhood. Not because of how my childhood was, but because I want to recapture that mindset, the one that says that everything is going to be alright. When people tell me “everything is going to be fine” I snort. I recoil. I don’t believe them.

It’s not always going to be alright.
Sometimes it is. Sometimes it isn’t.
But the road you must take to figure it out might break you before you ever find out for sure.

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I remember (a joint blogging exercise)

May 10th, 2011 § 19 comments

I left last Friday morning for a very special weekend. For 48 hours I went to Lenox, Massachusetts for a writing workshop for about 50 people taught by author Dani Shapiro on crafting memoir. I knew Dani, but hadn’t met any of the other attendees in person. I’d started chatting with a few of the women on Twitter in the weeks before the workshop and was excited to meet them.

Kripalu itself was new to me; as a person who doesn’t practice yoga I hadn’t heard of the well-known destination. I’ll write more about the details of the weekend in another post; suffice it to say that it rejuvenated me as a writer and a person. I spent my days with four special women (click on their individual names below to visit their blogs); the picture below was taken on Saturday night when Denise, Lindsey, and I stayed up late gabbing like college girls.

One of the many thought-provoking exercises that Dani Shapiro gave us while at Kripalu was to write for 10 minutes, without stopping, sentences that begin with “I remember.” (An exercise inspired by Joe Brainard’s classic book, I Remember).  Denise, Christine, Sarah, Lindsey, and I all found this both fun and surprising – we discovered that we wrote down both long-cherished memories and ones we had not even realized we remembered. Katrina Kenison (who was also at Kripalu this weekend) also recently wrote her own “I remember” list.

We think this is a powerful and revealing exercise, and wanted to share a few of our “I remembers” as well as invite you to participate. Please join us – either by writing a post on your blog about what you remember or by adding a few of your memories to our comments. Start with 5 “I Remember”s and if you get a good rhythm and flow, keep going! If you write your own post, please come back and link it here – and we look forward to reading and responding to your memories.

 

………………………………………………

I remember the purple fingerprints up and down the tape measure the surgeon used to mark me for surgery.

I remember going to Legoland.

I remember walking down the aisle.

I remember less than I used to.

I remember my mother’s light blue Cadillac and the way she put newspaper down on the floor of the backseat so my riding boots would not get them messy.

I remember mowing the lawn of my childhood home and being paid 25 cents for each of the four portions.

I remember visiting my brother at college and falling asleep to the sound of his girlfriend repeating “Mmmmm” as I told stories.

I remember pralines and cream ice cream.

I remember the way Clarke’s voice sounded the night he told me his mother had been killed in a car crash.

I remember how he almost fainted when Paige was born.

I remember my father telling me he thought my one year old daughter was too chubby and laughing about it once she grew so skinny she couldn’t find pants to fit.

I remember thinking that marrying Clarke would mean nothing bad would ever happen to me. I remember learning that I could not have been farther from the truth.

I remember how great it felt the first time a reader left a comment on my blog.

I remember my grandmother telling my mother and me she thought we were too close.

I remember the epidural. I remember not having the epidural. I remember which one I liked more.

I remember the bathrobe-style gown they use at Sloan Kettering.

I remember the last night I looked down and saw my breasts.

I remember waking up after they were gone.

I remember sleeping in Colin’s hospital room. And Tristan’s.

I remember being called “Mom” for the first time.

I remember hearing the words, “I know what’s wrong with your son.”

I remember thinking, “But what do people do on Twitter?”

I remember the strong smell of Steve’s cologne in high school and how you could smell him before you saw him.

I remember Bill’s white Ford Pinto.

I remember telling my parents I didn’t believe in God.

I remember my first serious boyfriend, James, telling me he loved Jesus more than he loved me. I remember telling him our relationship wasn’t going to work, then.

I remember clipping my grandmother’s toenails a few weeks before she died. I remember how the nail on her big toe was about to fall off and how I just couldn’t leave it hanging there.

I remember getting the phone call that my grandfather had died.

I remember my mother turning down the volume of the radio when my father would come home from work when I was growing up.

I remember missing my college graduation.

I remember my father giving me a list titled “10 Maxims for Our College Girl” when I went off to college.

I remember that my birthday cake had a horse on it.

I remember sitting for hours while my hair got permed in high school.

I remember thinking I would never weigh more than 100 pounds.

I remember my first blind date. I remember my last blind date. I remember that they were the same date.

 

 

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I can do better, but I have done my best so far (Mother’s Day)

May 8th, 2011 § 9 comments

I can do better, but I have done my best so far.
I’m not the fun mom, but I’ve taught my children big lessons in their young lives.

I try to be a good wife, mother, daughter, friend.
I try to inhabit the womanly roles even when I don’t always feel feminine.

I spend a lot of time inside my head,
twisting, pulling, ruminating.

It doesn’t mean I’m sad. It means I’m thinking.

I’ve made mistakes,
I regret some of them.

But my children are not those mistakes: they are my legacies.

I look at them and wonder how it can be that Clarke and I have created three people. Literally given them life.

It is a joy for a mother to see her children grow,
learn to inhabit the space they take in the world,
learn to own that property.

It’s as if children need to learn the size of their bodies– the breadth of their being– in order to go out into the world and participate in it.
I love watching this process unfold.

I can do better in the future, but I have done my best so far to mother them.
And really, that’s all anyone can ask.

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Crybaby

May 4th, 2011 § 10 comments

I decided to repost this old piece after reading Katie Rosman’s Wall Street Journal piece “Read It and Weep, Crybaby”

September 3, 2009
It’s 11:30 in the morning and I’ve already done it once today. Cried. Not sobs. But a quiet, empathetic cry. Large tears welling.

It happens less than it used to. I have gotten better at managing it. I can now get to the point where I well up, but the tears don’t actually spill out and run down my cheeks.

It’s progress.

That difference seems to make people less uncomfortable. My doctors are used to it; they know I well up. I figure if you’re dealing with cancer patients you are used to seeing lots of crying– you must have a coping mechanism. Maybe it doesn’t even register anymore. Maybe they are immune to it. I see tissue boxes in all of their offices so it’s likely a common occurrence.

There are certain subjects guaranteed to make me cry.
Tops on the list?
My parents; my mother in particular. Raise the subject of anything happening to my mother— any illness, any harm, most especially her death– these words if spoken aloud instantly make me cry.
My mother is, to me, a prized possession, a beloved security blanket that must remain complete and undamaged.

Other topics do it too.

Today the trigger was talking about a specific day I was bald in front of my plastic surgeon. I remember the way I felt stripped of every ounce of dignity in a way that being naked, topless, breastless countless times in his presence had never made me feel. Obviously I can still connect to that emotion.

I still remember that feeling of being naked. Not clothes-less, but dignity-less, bare of everything that held me together as me. Sitting in a coffeeshop with music playing and the sun shining and my friend sitting with me, I could still feel that feeling two years later.
I could still feel it. And I cried.
I cried for the friend I was with, herself recently diagnosed with breast cancer.
I cried because I didn’t want her to have to feel it too.

I cry for her sometimes. I cry because I want to protect her. I want to be the pit bull. I want to stand guard at her driveway, at her mailbox.
“NO!” I want to yell.
“You cannot have her,” I want to say to the intruder.
To cancer.
To all of the things she might have ahead of her that will cause her pain.
Silly, perhaps.
Childish, perhaps.

But that’s how I feel.
I bet that’s how she feels.
I know that’s how I felt.

As a person with cancer you wake up and think,
You know what?
I don’t want to have cancer today.
I want to take a day off.
I don’t want to go to any doctors.
I don’t want to make appointments.
I don’t want to talk about cancer.
And even though I can’t seem to talk about anything else,
I don’t want to talk about it.
I just want to stay in my pajamas all day
and eat peanut butter from the jar with a spoon
and have the world go on without me
because I don’t want to participate today.
I just want a “sit it out today” note from my mom
so I can just take a break today…
and maybe tomorrow too…

I want to protect my friend.

We moms are good at that.

My daughter started middle school. On the second day she came home and started in on her math homework. Within minutes she was in tears. She got frustrated and started crying. The teacher had given them a very hard sheet of problems and told them to see what they could do. Some of them were complex probability and statistics questions. She brought them to me and was frustrated. I didn’t laugh at her. Or even criticize her for over-reacting. I knew what she was feeling. I knew it was the “everyone else knows what they are doing and I’m the only one who doesn’t” syndrome. I knew that, like me, when frustration takes hold, our kind doesn’t get angry, we get emotional.

It’s not a great trait; it is especially hard for men to deal with. For husbands. For fathers.
My father used to go crazy when I started crying. It was just an irrational, irrelevant act he had to deal with. A distraction.
I know if my husband had been there he would have told our daughter to stop crying. I know the tendency won’t serve her well.

I always think of Tom Hanks’s character Jimmy Dugan in A League of Their Own when he yells “There’s no crying in baseball!”

It’s a good thing there wasn’t a sign on my oncologist’s door that said “There’s no crying in cancer.” Some days I think it’s a necessary part. I think it’s healthy. For me anyway.
I’ve cried on Saturdays.
On my birthday.
I’ve had breakdowns stringing Christmas lights on the trees in my yard when I just couldn’t get it right.
I’ve kicked the tires of my car.
I’ve slammed doors.
I’ve screamed to the sky.
I’ve sworn a blue streak.
I’ve cried so hard my stomach turned inside out and I’ve retched and collapsed because I just couldn’t hold myself up anymore.
I’ve dreaded the night-time because I knew I would be scared and my dreams would frighten me.
I’ve taken medications to muffle the anxiety of the chemo treatments I knew were about to come.
I’ve been terrified and wondered how I was going to get through it.
I’ve faked it and smiled and been the portrait of strength and composure while ready to crap in my pants because I was so scared inside.
I’ve felt the chemo needle go in my arm bringing the drugs in, felt the cold liquid hit my blood and wanted to scream “Wait! I’ve changed my mind! I think it was a mistake! I think it wasn’t me! I think you got it wrong!”
I felt the pre-medication go through me, hit my brain, cross the blood-brain barrier and fog me up.
Pausing, knowing it’s in me.
Thinking
Please.
Please.
Do your work.
Save me.
Drugs, do your work and save me.

How will I know if they did? I won’t.
I don’t say I’m cancer-free. I have no idea if I am.
I will hopefully die of something else and I will have my come-uppance. I will give cancer The Finger.
I will have it say on my tombstone:
Hey, Cancer: I laughed last. I died of something else.

So, call me a crybaby.
I prefer to say I experience the world richly.
Either way, I make no apologies for my tears.
That’s the kind of girl I am.

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The Sisterhood of the Scarves

May 3rd, 2011 § 26 comments

There isn’t one right way to react to loss. And the thing about grief? It’ll sneak up on you precisely when you’re not looking.

This morning I attended a memorial service for a 38 year-old mother of two. She died of complications from leukemia, leaving a loving husband and two children behind. We were connected by a shared friend and a diagnosis of cancer.

When Kellie was diagnosed fifteen months ago and learned she needed to have chemotherapy I offered her my scarves. I had an extensive collection from my months spent without hair and had been serially loaning them out to friends after my hair grew back. After they’d covered my head, they’d gone to a friend’s sister in Colorado who had breast cancer. Then they went to a friend down the street who also had breast cancer. The fourth head they touched was Kellie’s.

During that time I had to deny others the use of the collection. I know too many women who’ve had cancer, I thought. There isn’t a break in between their tours of duty. The scarves don’t rest, they just keep traveling.

Perhaps some might find it icky to wear a scarf of someone else’s. That never seemed an issue for my friends. In fact, their softness from being washed so often was a bonus; heads are sensitive when hair comes out and the softer the cotton is, the better.

Kellie had those scarves for a long time. Her own fiery red hair was long gone; my scarves were a poor substitute for that ginger hair of hers. I like the thought of her having something comforting and cheery to cover her head during some of those difficult days though.

After the service today the guests stood talking over coffee and tea and far too many sandwiches and baked goods. Unprompted, our mutual friend assured me the scarves were safe and would be returned soon. I know when the stack comes back I’ll touch the scarves longingly, wishing Kellie were delivering them herself.

I’m overwhelmed today with emotions… sadness at the second Mother’s Day without my beloved mother-in-law, anger at cancer for claiming another young mother, frustration that oncology is often an art more than a science, worry that it will happen to me.

I just need to think. I just need to cry. I just need to remember. I just need to live.

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Litmus Test

May 1st, 2011 § 5 comments

In the weeks before my surgery, I looked at pictures of double mastectomy patients on the Internet. I Googled “bilateral mastectomy images before and after” thinking I was doing research. I thought I was preparing myself for what was coming.

In reality I was trying to scare myself. I wanted to see if I could handle the worst; if I could, I would be ready. My reaction to those images would be my litmus test.

Some of the pictures were horrific. I sat transfixed. I looked. I sobbed. I saw scarred, bizarre, transformed bodies and couldn’t believe that was going to be my body.

Days later, when I met my surgeon for my pre-op appointment he said, “From now on, don’t look at pictures on the Internet. If you want to see before and after pictures, ask me– look at ones in my office. You can’t look at random pictures and think that’s necessarily what you are going to look like.”

All I could do was duck my head in an admission of guilt. How did he know what I’d done? I realized how he knew: other women must do this. Other women must have made this mistake.

The aftermath is terrible to me though not in the ways I’d anticipated. I have no sensation in most of my chest. I never will.

A major erogenous zone has been completely taken away from me. Yes, I have new nipples constructed, but they have no feeling in them; they are completely cosmetic. The entire reconstruction looks great but I can’t feel any of it. It does help me psychologically beyond measure to have had these procedures though.

Here I sit, two gel-filled silicone shells inside my body simulating the biologically feminine body parts I should have. And sometimes that thought is disturbing.

To be clear: I don’t regret having them put in. I’ve never regretted that. It was a decision I made, and made deliberately. I knew that reconstructing my breasts was the right decision for me. I’m getting used to them– I’m almost there.

I definitely don’t remember what my breasts looked like before. I only remember these.

I once asked my plastic surgeon to see my “before” pictures a year or two after my reconstruction was over. You know what? My “before” breasts didn’t look so great. In my mind they did.
In my mind, everything about my life before cancer was better.
But that’s not the truth.

My mind distorts the memory of my body before cancer. Then forgets it.

My mind distorts the memory of my life before cancer. Then forgets it.

With time, I can get used to a new self.
It’s like catching my reflection in the mirror: only lately do I recognize the person staring back at me.
For over a year the new hair threw me. It’s darker than I remember it being before it fell out. It’s shorter than it was before, too.

And the look in my eyes? That’s different also.
I just don’t recognize myself some days.

Sounds like a cliché if you haven’t lived it.

But it’s true.

April 15, 2009

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Inspiration: just doing my job

April 30th, 2011 § 6 comments

What does it mean to “be an inspiration”? A few people have said that to me recently: I am an inspiration. At first I laugh. I guess I’m an inspiration because I’m still alive. Maybe that’s enough.

What’s inspirational about me? Trust me, I’m not searching for platitudes here. I’m trying to get at “what makes someone an inspiration” and why do people think I and so many other breast cancer survivors qualify? There’s definitely more than one day’s blog in this question.

Is it being a mother and worrying about your children more than yourself? No. That’s what every mother does.

Is it summoning strength to confront chemo when it’s your greatest fear?

Is it putting a smile on your face when you are crumbling inside?

Is it speaking the words, “I have cancer” to your children, your friends, your husband, your parents, your in-laws, your brother, and all of the people in your life enough times that eventually it starts to sound normal?

Is “inspirational” when you offer to show your post-mastectomy body to women so that they will know the results just aren’t as scary as they are thinking they will be?

Is it answering everything and anything people want to know?
Is it putting words and feelings in black on white?

The essence of inspiration is being strong.
When you least want to be.
When you are faking it.

Strength.
When you lack it.
When you have to dig deep for it.

When your kids need dinner and you want to vomit from the chemo.
When you are too weak to climb the stairs.
And you don’t think you can get through another day.
Or hour.
Or minute.
Or second.
And you just want the pain to end.
Somehow.
Some way.
Any way.
Just have it go away.
When your pride is gone.
Dignity is gone.
All of it.

Being inspirational means being tough.
It means feeling rotten but not wanting others to.
It means wanting to put others at ease with how you are doing.

It means being a lightning rod for everything bad.
A catalyst for everything good.
A spark.
A resource.
A friend.
A wife.
A lover.
A mother.
A daughter.

It means telling your parents you feel okay when you don’t.
A little fib so they will go home and get some rest for the week.
Take some time off for themselves before they come back in 8 days and do it all over again.
A break so they don’t have to see their little girl suffer anymore

Because 6 days in a row is enough.
For anyone.

Because looking good makes others feel better about how you are doing.

So you put makeup on.
And dress well.
And put a big smile on your face.
So they will think you are feeling good.

And when you switch the topic of conversation, they will go along with it–
They will believe you when you say you are feeling better.

Okay, so maybe I am inspirational. I don’t call it inspirational. I can only admit to the smaller things. The micro things. Inspirational sounds big. Important. It’s hard to accept that one.

But I think I’m convinced.

The reason I’m going to finally concede is that I just realized something:
That was my goal.
Except I wasn’t calling it that.
I was just calling it doing it right.
I was calling it setting an example.
I was trying to show my family, especially my daughter, how you can tackle an obstacle– a big one.

I was just doing my job.

 

June 15, 2009

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The Stories It Could Tell

April 28th, 2011 § 12 comments

I almost stole it: the tape measure with the purple finger prints.

After all, my surgeon had left it in my room by accident. After he had marked me with his purple pen and left my room on his way to get ready for my surgery, he left it sitting on the counter by the sink. In my nervousness and tranquilized haze I didn’t see it until after he’d left. I figured I shouldn’t hold onto it as I was wheeled in (“Who knows what germs lurk in tape measures!” I thought), and that if I gave it to a nurse it might get misplaced. So I shoved it in my bag of personal belongings knowing I’d be in for an office visit shortly after surgery.

I actually forgot about it during the days I was home after my two-day hospital stay. The drugs, the pain, the shock of my breasts gone and numb chest filled with temporary tissue expanders were all I could think about.

I forgot all about it as I was shuttled around for weeks unable to drive. I wasn’t living my normal life, my normal routine. I wasn’t carrying my purse and keys daily. I was living in pajamas and constantly trying to adjust to a new body once the drains were removed.

Then while I was looking for my keys a few weeks after my operation I saw it: the tape measure.
The yellow fabric one with the purple fingerprints up and down its sides.
The one.
The one that had measured and determined where my body was to be cut.
It was there in my bag.

There wasn’t anything particularly special about its practicality; it was just a tape measure.
Just like the ones I have sitting around with all of the odds and ends that inhabit kitchen drawers.
But that doesn’t capture the social meaning of it.
It wasn’t just any tape measure. It was mine.
But it wasn’t just mine, I argued with myself—it wasn’t a personal momento for me.

For a moment or two I wanted it.
I needed it,
as if to remind myself what had been,
of what I had been.

It wasn’t mine, I thought– it was his.
But more than that, it was theirs; it was ours… the other women who had needed it.
Now I was one of them. It was a shared history we had: strangers who had endured the same surgery, whose faces and names I would not know.
We were bound together by this object which had literally touched all of us.

And then I realized it was my responsibility to give it back.
Not for the obvious reason that it didn’t belong to me.
But as usual, I thought of the other women: the ones who didn’t even know they had cancer,
the ones who were going about their normal lives that day, and in the days ahead, only days or weeks or months from learning the life-altering news that would change their lives.
I felt giving back the tape measure would be my way of being bound to them, of saying “I know what you have ahead of you. I’ve come from there, and we are in it together.”

And so when I went to one of my office visits, I took it out of my bag and casually handed it to my surgeon. “You forgot this in my room when I had my surgery,” I said. He thanked me and said “I wondered where it had gone to.”

Little did he know the journey it had taken.

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When friendship and cancer don’t mix well

April 24th, 2011 § 30 comments

I have a friend — a good friend. We’ve known each other for a long time. When I was going through chemotherapy for breast cancer, however, she wasn’t my most sympathetic friend. One of her typical reactions when I would talk about the bottomless fear of cancer recurrence that was swallowing me up was, “Well, I guess you’ll just have to get used to it.”

This was not really stellar support in my book; I think she could have done better. In my mind, because a close family member of hers had cancer in her past, she was not a stranger to its emotional component. Perhaps if no one in her life had ever had cancer I might have been more forgiving. Her relative was doing well, still in remission many years after her initial diagnosis. I mentally wrestled with myself: was I being too hard on a friend? After all, my emotions were on a rollercoaster. Things that didn’t bother me one day would infuriate me the next. Was I actually trying to let her off the hook for not emotionally supporting me? Was I excusing bad behavior? If those who have no experience with cancer shy away from those who are ill and those who have experience do so as well (if the memories are too painful to think about) then who is left to support you when needed? I couldn’t decide if I was expecting too much; maybe I was setting my friend up for failure.

Many times on the phone with her during my months on chemo as she proceeded to rant about the problems in her life and the ways in which things were not going her way, I wanted to point out to her how my life was “doing me wrong” in a bigger way.

Looking back, I wanted to trump her woe.

Lately, she has been having some medical issues of her own. Nothing permanent or relatively serious, but annoying and painful. For the last few weeks she has had some pain that is “excruciating.” She’s abroad this week, on vacation with her family. The pain, I guess, was not enough to keep her from that. While she has complained about her pain, her appointments, her problems for the last few weeks, I’ve really been holding back. I’ve really had to fight the part of me that wants to once again lash out.

“I guess you will just have to deal with it,” I want to say just like she did to me.
“I guess it’s not bad enough you can’t take your European vacation,” I want to say in a childish retort.

I want to trump her pain.

I want to wave the cancer card. Cancer trumps her issue, chemo trumps the discomfort she’s got.

Four years ago I found it almost intolerable that she should complain to me about the small things that were bugging her… the traffic on the way to school dropoff and how “inconvenient” her child’s schedules were. The way she had to take her child to the doctor twice in one week to check out an ear infection. How repairmen were keeping her waiting.

These things get sympathy from me under normal circumstances; these are things that bug me in my own daily life.

 

But not then.

While I kept silent then,
put it behind me then,
this latest round of friendship injustice just makes that time raw once more.

It brings that anger back.

My fear is that every time my friend has a hard time from now on, I am going to again have that feeling that she let me down when I needed her. I thought I had moved past it, but I guess not.

I don’t want it to get in the way of our friendship.
Maybe someone who wasn’t there for me then can’t really be a friend now.
Maybe some lessons can’t be learned until you go through them for yourself.
Maybe she can’t know how her responses hurt me unless she experiences it for herself someday.

The thing is: I don’t wish it on her.
People have different strengths.
We shouldn’t expect a person to be good at everything–
To fulfill all of our needs, all the time.

Extraordinary times call for extraordinary measures.
Maybe that’s true of forgiveness too.

 

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Scylla & Charybdis

April 22nd, 2011 § 21 comments

Sometimes a random comment stays with you forever. When I was in high school, a guidance counselor said something with me that has stuck in my mind for more than 20 years. I think I had lost a student council election and was discussing it with this advisor. I am actually not sure what the triggering event was, but I vividly remember her words to me: There are people that you like, and there are people that you respect. You are the kind of person that people will respect, but they will never like.

Setting aside the ridiculous (and destructive) way of simplifying the world into these two camps, what effect did this counselor’s words have on me?

This interaction started a time of introspection and self-examination. I felt for a number of years that I needed to choose: did I want to be liked or respected? Which is more important? Did I have the self-confidence and awareness to eschew the lure of peer pressure and popularity? Should I solely strive to engender respect instead?

I spent a while in college trying to figure it out. I literally “tried on” different combinations of being easygoing (likable) with allowing my stronger, perhaps more abrasive side to emerge.

Somewhere along the way, I found my voice in the classroom– first as a student, and later as an instructor. I think that’s where I first felt comfortable with who I was. I gathered confidence as time went on. Looking back on it, I think I learned the art of self-expression in the classroom. I realized the importance of being able to articulate opinions in a way that is diplomatic; by doing this, one could be liked and respected.

Somehow, in my independence and natural process of maturing, I realized that the counselor was wrong. Her heuristic for analyzing the world was absolutely incorrect. Though it doesn’t necessarily happen that way, you can be liked and respected. It is not a Pareto-optimal choice you must make (where choosing one necessarily comes at the expense of the other).

I have spent much of my adult life trying to prove that woman wrong. In hindsight, her statement was probably more a reflection of her own psychological insecurities than an assessment of mine. I certainly have my own internal struggles, but I’m not about to let words from 20 years ago plague me. In the end, I think I have found a balance. I hope I have.1

  1. one of the things that is so fascinating about this type of comment is that I am sure this woman neither remembers me nor the comment. Educators should be aware of the effect their “offhand” comments may have [↩]

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