Inaction, it seems, is harder to tolerate than action.

Doing something, even if it’s ultimately a mistake, is better than doing nothing.

I’m constantly torn between taking chances and staying nestled in the warm comfort of habit. I am a lover of routine, constancy, predictability. One of the many reasons I fell in love with my husband is his admirable and enduring sense of calm. I am more hot-headed, far quicker to be annoyed, get frustrated, to yell. I strive to be more like him in his ability to go with the flow, but most often I fail miserably.

I’m not a risk-taker. I tend to over-think things. If there is something unpleasant that needs to be done, I do it immediately so I can move on. If I were still a child I would eat the green vegetables first so I could enjoy the rest of the meal.

Making drastic changes often doesn’t work. I’ve been trying to branch out in a few ways over the past few months and I’m happier for it. I’ve started doing Pilates weekly, sometimes twice a week, and I’m loving it. I am physically stronger, have a teacher I adore, and many weeks get to take the lesson as a duet (semi-private) with a dear friend.

I’ve been taking lots of photos and enjoying not only the images I’m capturing, but also the social element of sharing them on Instagram. I enjoy seeing the slivers of beauty that are around us every day and am taking time to appreciate them more.

I’m taking more chances with my writing. I’ve been privately writing about a wider variety of topics, and trying out longer-form work. I recently read a story I wrote out loud to a group for the first time.

I curse middle age a few times a day, mostly about my body and how things just don’t work like they used to. But the perspective I have through my life experiences, the wisdom that I have after 42 years of ups and downs, the confidence to say, “I am flawed, I will try to be better, but I also know who I am” are all valuable.

I enjoy having others in my life but also know that when it comes time to take a chance, I can wrap my arms around myself and jump.

I will hang this in my office to remind me that clouds and rain may come quickly, but the sun will always return, even if it takes a little while.

Two simple sentences that captured so much of what I’ve been thinking about this week.

The tweets read:

Folks, these were the days I fought for during chemo. This time is my reward. These days with my family are priceless.

It doesn’t mean I don’t complain, or have bad days, or get frustrated with my kids. Life isn’t perfect. But I try to appreciate all I can.

breakfast

the simple geometry of a beach umbrella

open door policy

pool steps

I took many photos this week which you can see now on Instagram (my username there is AdamsLisa). I’ll be posting my favorites here occasionally in the weeks ahead, and probably next winter when we all are craving some views of sunshine and palm trees.

I am grateful to Clarke for working hard each day to pay for the trip, to my children for being the individuals they are who make me smile, laugh, and go to the computer to Google answers to endless questions. I always appreciate their hugs and kisses and sense of wonder and enthusiasm for life. I know these days with them are fleeting.

Life is fragile. I know it.

I am treasuring these last hours here in Paradise.

Using the real words to name our diseases/conditions can also be important for children’s knowledge of their family medical history. I have heard stories of women diagnosed with breast cancer who only learned of a family history of the disease after their own cancer was diagnosed. Only then did information come to light that relatives had also had the disease. Perhaps knowledge of a familial history of the disease would have been useful at an earlier time and monitoring could have begun sooner.¹

…………………………….

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.²  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.

1. usually screening recommendations are different if there is a family history
2. 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 them or heavy objects

My thoughts on this topic stem from a variety of influences: my father spent his career as a cardiothoracic surgeon and now is editor of the Journal of Lancaster General Hospital. My mother spent her career as a psychologist. I have a graduate degree in sociology. Five years ago I was diagnosed with stage II breast cancer. I have a son with congenital defects in his spine and hands.

I list some of these influences because they are important sociological variables and have surely affected the way that I think about this subject. It is often the case that anecdotal evidence supplants cumulative scientific data when people make decisions; that is, if you or someone you know has had a certain experience, that information will weigh more heavily into your thought process than knowing what “the statistics show.”

When I underwent a double mastectomy and completed chemotherapy for my breast cancer, my two oncologists and I sat down in separate meetings to discuss the always stressful: “What now?” I had hormone-receptor positive cancer (breast cancer that is “fueled” by estrogen and/or progesterone)  so I was able to take adjuvant therapy.¹ I opted to have my ovaries removed even though I am BRCA-1 and 2 negative.

But what about screenings? After my double mastectomy they told me I wouldn’t get mammograms anymore. I would, however, do “tumor marker tests” that measure levels of antibodies in the blood. They are not very reliable, and therefore are not good screening devices. This is why they are not yet used for the general public and some oncologists don’t even use them. The tumor marker tests can sometimes show if cancer has returned before other symptoms show. Because the tumor marker tests are done via routine bloodwork, the tradeoff seems acceptable to us. The tests are relatively benign. When it comes to other testing, however, the bigger discussion started with my oncologists.

What about PET scans?² Chest x-rays?

Discussions about screenings and testing are negotiations of sorts. As the new research and guidelines indicate, doctors and patients are often at odds on how much monitoring is “just right.” I propose that one of the most important variables in this discussion has been overlooked: the psychological ability of the patient to tolerate ambiguity. That is, I believe there are some people who can live with uncertainty better than others, and the amount of uncertainty a patient can accept in his/her treatment should be an important consideration in current discussions about overtreatment of patients.

The decision to have a prophylactic mastectomy on my right side, for example, was in part made because I didn’t want to worry about getting a new primary breast cancer on my other side.³ Some consider this decision controversial and I’ve spoken about my thought process here in USA Today with a followup to critics here.

Screenings are not always benign. While blood tests may be considered simple, they still cost money. Mammograms, x-rays, CT scans, and PET scans all expose the patient to radiation in varying amounts. Many patients are not aware of the relative radiation exposure that screening/diagnostic tests pose. For example, a chest CT provides nearly 200 times the amount of radiation as a two-view x-ray of the chest. A helical abdominal/pelvic CT provides the same amount of radiation as twenty 4-view mammograms (full article here).

My oncologists were quite clear five years ago: there would be no PET scans for me. I worried: after all, shouldn’t I be monitoring my body for any residual cancer? In my particular case, they were adamant: no (of course there are many cases where this risk-to-benefit ratio is different and PET scans are necessary. There are many factors used to make this decision). These decisions are not solely about radiation exposure; they also take into account how likely tests are to yield false positive results on a PET scan.⁴ There are many reasons why areas may “light up” in a scan, arousing suspicion. If any areas do light up, this could provide more anxiety and opportunity for additional testing, most often unnecessarily. Not every suspicious area can be biopsied, and you can’t biopsy every time something lights up. Instead, watchful waiting with a keen eye to symptoms of potential recurrence is what we’ve determined is best. I do get a chest x-ray each year. I do tumor marker tests. I follow up with my physicans if there is pain that doesn’t resolve (which can sometimes be a symptom of a cancer recurrence).

I’ve taken a different approach in the past few years with tests not only for myself but also for my children. I always ask “Is this really necessary? Is it important? Does it need to be done this often?” This is not to say that the test won’t happen. I’m not arguing with the providers. But discussing these topics is important. Frequently, tests or screenings are suggested with a time range and now, with with some tests, if screenings have been clear in the past, longer intervals may be used in the future (Pap smears, dental x-rays, etc.). It is worth reading about some of these options and talking to your doctor/dentist about them.

Research shows that antibiotics are not needed (and no more effective than placebo) for many common illnesses like bronchitis, sinus infections, and ear infections. Yet, patients often clamor for them.

As I talked about in the USA Today interview/response piece, there are many factors which come into play when deciding what surgery one wants to have and what level of follow-up care is right for patients. This determination is one that a doctor and patient must come to together. Each must rely on the other to help navigate the murky waters of staying healthy. That said, our healthcare system does not often allow for such conversations to occur and does not reward doctors for the time needed to have in-depth conversations with their patients. Further, physicians are still concerned with liability if they opt to reduce testing on a patient and they miss a problem.

One variable that I think will help doctors and patients come to a more mutually satisfying relationship is a determination of the patient’s tolerance for uncertainty. With this information, physicians can identify more pointedly which levels of acute treatment and long-term follow up care are both psychologically acceptable to the patient and medically reasonable.

1. adjuvant therapy referes to drugs taken after chemotherapy to block the effect of the hormones… for pre-menopausal women this would be a drug like Tamoxifen, for post-menopausal women an aromatase inhibitor like Arimidex
2. Positron Emission Technology scans require a radioactive dye to be introduced into the body via IV that is then absorbed and monitored. It can be used for a variety of purposes but is freuquently used to try to identify tumors in the body
3. even though I was told the statistical likelihood was the same as that of getting breast cancer in the first place. I decided that those odds hadn’t been in my favor once before. Part of my decision was made for aesthetic reasons of symmetrical reconstruction, but part was made to avoid mammograms and biopsies in the future. In the end, pathologists found dysplastic cells in my “healthy” breast so maybe being proactive was a better decision than I even knew at the time
4. a false positive result is one which indicates there is a problem when in fact, one does not exist

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.

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.

……………

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

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.

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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.

Only this morning I learned about what could be the single worst pink ribbon product ever: a handgun.

You can read more about it here. (Note: this story is literally unfolding. A commenter has correctly brought to my attention that Komen is now disputing this alliance. I’m leaving this section in place but acknowledge that this product is currently being investigated. One article appears here)

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.

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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.

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.

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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.

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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.

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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:

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.

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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.”

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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.