Home Is (bleeping) Burning

I heard an interview a while back with Dan Marshall, who wrote a memoir about caring for his terminally ill parents. Yes, you read that right: parents, plural. Both of Marshall’s parents had a terminal disease: his mom’s lymphoma and his dad’s ALS.

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The book, Home is (bleeping) Burning, tells the story of the Marshall family, who (except for their copious and creative cussing) sound like a regular American family living their lives and doing their thing until their regular lives are upended by health crises. Here’s how Amazon describes it:

For the Marshalls, laughter is the best medicine. Especially when combined with alcohol, pain pills, excessive cursing, sexual escapades, actual medicine, and more alcohol.

Meet Dan Marshall. 25, good job, great girlfriend, and living the dream life in sunny Los Angeles without a care in the world. Until his mother calls. And he ignores it, as you usually do when Mom calls. Then she calls again. And again.

Dan thought things were going great at home. But it turns out his mom’s cancer, which she had battled throughout his childhood with tenacity and a mouth foul enough to make a sailor blush, is back. And to add insult to injury, his loving father has been diagnosed with ALS.

Sayonara L.A., Dan is headed home to Salt Lake City, Utah.

Never has there been a more reluctant family reunion: His older sister is resentful, having stayed closer to home to bear the brunt of their mother’s illness. His younger brother comes to lend a hand, giving up a journalism career and evenings cruising Chicago gay bars. His next younger sister, a sullen teenager, is a rebel with a cause. And his baby sister – through it all – can only think about her beloved dance troop. Dan returns to shouting matches at the dinner table, old flames knocking at the door, and a speech device programmed to help his father communicate that is as crude as the rest of them. But they put their petty differences aside and form Team Terminal, battling their parents’ illnesses as best they can, when not otherwise distracted by the chaos that follows them wherever they go. Not even the family cats escape unscathed.

As Dan steps into his role as caregiver, wheelchair wrangler, and sibling referee, he watches pieces of his previous life slip away, and comes to realize that the further you stretch the ties that bind, the tighter they hold you together.

In the interview, Marshall read passages from his book, and just so you know, the language and some of the topics in Home Is (bleeping) Burning may be less than pleasant for some readers. (Does it mean I’m weird/crude/uncouth/all of the above because I really relate to and enjoy the mom, who is the most prolific with her cussing?). Also note that the Marshalls live in Salt Lake City but are not Mormon, and there are some non-PC comments made about their Mormon neighbors. Perhaps this book is not for the faint of heart. But then again, neither are terminal illnesses or recurrences or sick parents. As Greg Marshall (the author’s brother) so eloquently put it: “For the Marshalls, life is a contest to see who is _____-est. Bravest. Weirdest. Grossest. We take our lack of filter to superlative heights.”

Perhaps my own lack of filter attracted me to the Marshalls’ story. It could also be because I too cared for a sick parent. I too experienced the strange role-reversal that comes with caring for a parent. I write often about the terrible yet honorable practice of becoming the authority figure and advocate for the person who, until their illness took hold, was the authority figure and the advocate for me. I write often about how my mom’s death affected me, and continues to affect me. That’s why my ears perked up when I heard about Dan Marshall and his memoir.

This passage got me. Hit me hard. Reminded me of my own sweet mama (without the cussing). This passage describes the family discussion on Christmas day. The topic is how the family will handle Mom’s lymphoma recurrence and Dad’s new ALS diagnosis. Dan described his mom’s stance upon learning her cancer had come back:

“She wasn’t just going to roll over and let cancer f*** her to death. She was going to fight and fight hard. And she suggested we all do the same.”

Indeed. May we all do the same.

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Does It Ever End?

Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. mandjeffreyThis is my favorite girl today. fullsizerender

I know, right??? How does that happen???

Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.

She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.

Feelings. The dreaded feels.

I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)

Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.

When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.

That will happen, right?

Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.

I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.

I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:

Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.

I should know damn good and well that there is no end. So why do I keep looking for it?

 


New year, new game

Two weeks into this new year, I am wrapping my head around a whole ‘nother challenge. This new game has nothing to do with cancer (for the moment, anyway — knock wood) but concerns the myriad ways my body challenges me. I refrain from classifying those challenges as failures, i.e., the many ways in which my body is failing me, because that is the new game: the mental side of physical illness.

I’m a fierce player in all aspects of the game that is confronting health issues. All aspects except the mental game. I suck at that part. Give me the worst-case scenario (mycobacterium fortuitum, I’m talking to you) and I will slay it. Give me a long, difficult road on which to travel, and I will keep on truckin’. But tell me that the only weapon I have in which to fight is my mind, and I’m hosed. Tell me to stay positive and look on the bright side, and I struggle. Offer me platitudes and I will want to punch someone. Outlook: not great.

Some of the news ways in which my body challenges (fails) me are minor: graduating to the bifocal club, or needing to hit the hay well before midnight. To those challenges I say let’s call a truce. But the bigger challenges are well, bigger. And more challenging. There are three bad guys vying for attention these days: the bad knee, the wonky thyroid, and carpal tunnel syndrome. Awesome.

The bad knee is acting up and acting out. Again. Three surgeries and countless rehab exercises mean nothing to that old hag. The misaligned kneecap is screaming for attention, and the missing cartilage is hunkering for its piece of the pie. Two very squeaky wheels in an already crowded field. The second round of synthetic synovial fluid injections did little to appease the missing cartilage. IMG_3073Despite the giant needle being jabbed straight into the innocent flesh adjacent to the bone-on-bone area, relief evaded me. Upon reviewing my day-after-Christmas x-ray, my orthopedist shifted gears from a previous recommendation of partial knee replacement to osteotomy, which requires cutting the bone at the top of the tibia and using plates and screws to relocate it in its proper place. The one word that comes up when researching the recovery for this surgery: brutal. Standard care is crutches for two weeks and a cane for a month alongside endless physical therapy. Thanks but no thanks.

The thyroid is being an asshole, as well. Long story short: underactive thyroid, two daily meds, and two nodules that may or may not be problematic, and dissenting opinions by my crack medical team as to whether another thyroid biopsy is needed. Being the fierce player that I am, had my crack team concurred, I would have promptly had that biopsy. As much as I detest the idea of another needle being stuck IN MY NECK, I will do it if it’s necessary. But if there is dissent on the matter, I’ll defer. That said, that asshole thyroid has some wily ways of mucking up my life. Symptoms and side-effects of a wonky thyroid are far-reaching, and just when I think I have them under control (or am at least resigned to them), another one makes its grand entrance.

Which brings us to the third challenge: carpal tunnel syndrome. For a couple of years I’ve had what I thought was neuropathy: tingling, numbness, swelling, and radiating pain in both hands especially first thing in the morning. It came to a head shortly after we moved into our new house last year, and my GP chalked it up to overuse of my hands and forearms from packing and unpacking endless boxes. A round of steroids and some anti-inflammatories should have done the trick, but instead there is a fresh new hell to endure. 165305

Ugh.

If I employ the “coulda/woulda/shoulda” tactic for dealing with the three most-pressing physical challenges, I find myself regretting my decision to put off treatment even though I had met that $6,000 deductible last year. As I face the blank slate of a reset deductible, I wish I’d sucked it up and had the surgeries and procedures I need. Perhaps I would not be typing this very post with pins & needles fingers. Perhaps I would not be thinking about how stiff and sore my knee will be after sitting at my desk to compose a blog post. Perhaps I would not be chiding myself for having been tapped out by the end of 2014.

Cue the mental side of dealing with a physical issue. Because I did not have these problems surgically repaired, I must figure out how to change my thinking. For instance, I give myself a pep talk on the way to the gym. It goes something like this:

“Don’t think about what you used to be able to do, but focus on what you can still do.”

“You’re here.”

“Lots of people more able-bodied than you aren’t even trying.”

“Don’t look at what the other gym-rats are accomplishing; comparison is the thief of joy.”

“Even a shitty workout is better than no workout at all.”

I’m not very good at this part. I recall the words of my favorite yoga teacher: where my mind goes, so too goes my energy. I envision my faulty parts bathed in a warm glow of healing energy. But it’s work. A lot of work. I’m not a fan of listening to my body and accepting limitations; I much prefer to push through the pain. It’s a struggle to avoid falling into the “haven’t I suffered enough??” mentality, and it’s certainly not a great way to start a new year. But, instead of deciding that this old dog can’t learn a new trick, I will become a player (albeit not a starter) in this mental game. As the great Yogi Berra once said, “Ninety percent of this game is half mental.”


A terrible, horrible, no good, very bad day

To quote from Alexander, the hero of Judith Viorst’s timeless children’s book, today was a “terrible, horrible, no good, very bad day.” Alexander-and-the-No-Good-image

Actually, truth be told, it’s been a terrible, horrible, no good very bad month. It’s been a death-by-a-million-paper-cuts month.

I didn’t wake up with gum in my hair or miss out on dessert at lunch like poor Alexander did. But it’s still been a THNGVB day.

This is dangerous territory. As a cancer “survivor” I should be grateful. I should be happy. I should be thankful to be alive and (more or less) in one piece.

To which I say, screw the “shoulds.”

Of course I’m grateful to have “survived” cancer (and of course I recognize that the “surviving” only hold true until the day in any given month in any given year that the cancer comes back. Which it does for some 40 percent of women diagnosed with early-stage, favorable breast cancer). I am happy that I’m not currently metastatic. I am thankful to be alive. None of this, however, cancels out the rest of the yucky stuff involved, and sometimes a girl’s gotta vent.

Today was the tipping point of my THNGVB month. A punctured tire this morning turned today’s to-do list into a scrap in the recycle bin. A cut on my leg from two weeks ago has become red, hot, painful, and pussed instead of healed. My attempts to slather it in Neosporin and cover it with a band-aid didn’t cut it (heh heh) so I’m now back in antibiotic hell. Cue the nausea, thrush, and terrible taste in my mouth, which join the dizziness, joint pain, neuropathy, fatigue, mental fog, muscle weakness, hot flashes, and sweating. Sheesh. I mean, sheesh.

I’ve been blaming this fresh hell on Aromasin, the latest aromatase inhibitor I’ve been taking to stave off a recurrence of my cancer and (theoretically) live a longer life. However, I’ve had the luxury of being off the dreaded Aromasin for a two-week period in advance of and following surgery. Yes, another surgery. Don’t be jealous. Perhaps it takes more than a two-week window to rid oneself of the nastiness Aromasin brings. Perhaps I’m just a whiner. Either way, I don’t feel good and I firmly believe that in some cases, the cure is worse than the disease.

Attempts to ameliorate any one of these symptoms are for naught. Taking a probiotic. Counting my blessings. Backing off of the intensity of my workouts. Viewing photos of baby donkeys and Golden Retriever puppies. Lighting a yummy-smelling candle. Drinking more water. Making an appointment with a neurologist. Doing a good deed for a friend in need. Nothing is helping. Nada. Nuttin.

In my most recent attempt to carve out a moment of not-hell, I read this quote in the current edition of Oprah’s magazine:

In our day-to-day lives, it’s easy to become overwhelmed with responsibilities and challenges. Having enough time to give to everybody who needs you and have any left for yourself is a constant struggle. But in the long run, designing space for you is the only way you can survive without burnout and resentment. There is no life without a spiritual life, and spirituality is like a muscle. It must be fueled. Fuel yourself with beauty, inspiration, music, laughter, nature, a hot soaking bath, silence. Whatever form it takes for you. Know this for sure: You have more to give when your own tank is full.

Dammit, Oprah! I’m trying. I’m trying to design space for me and to fuel myself. But what does one do when nothing is working?

I suppose I’ll have to take a page from Alexander’s book and move to Australia. alexander-childrens book-disney

 

 

 

 


Suck it up, buttercup

This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.

Proceed at your own risk.

The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”

The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they do in fact detect cervical cancer. It’s the “no known cancer risk” part that really galls me. How do we know what our risks are if we can skip out on unpleasant tests?

Despite the ACP’s “feel-good” stance, the American College of Obstetricians and Gynecologists continues to recommend pelvic exams and says that eliminating the exam would mean “providing women with less comprehensive care.” In addition, the ACOG recognizes that many women don’t mention symptoms in their nether-regions until a doctor finds an abnormality, and that many women receive peace of mind from knowing that everything is normal below the belt.

Gynecologists agree that pelvic exams are not good tools for screening for ovarian cancer, which is notoriously difficult to diagnose. But, they say, experienced physicians can use pelvic exams to find other problems, such as noncancerous fibroids, and to identify changes linked to urinary incontinence and sexual dysfunction. And equally importantly, to establish a baseline of normality so that a change is easier to detect.

Dr Barbara Levy, vice president for health policy for ACOG says, “Not everything we do in life can be studied in a randomized trial powered to find a scientifically valid answer one way or another. I’m not sure there’s evidence to support most of what we do on physical exams. Lack of evidence does not mean lack of value.”

 Anyone who has ever undergone a pelvic exam knows it’s not pleasant. No doubt. But guess what’s also unpleasant? And dreadful? Reproductive cancers. And if doctor’s groups are recommending women be spared from unpleasant exams today, who’s to say that similar recommendations against other unpleasant screenings won’t follow? Residents of cancerland, raise your hand if you find routine visits to your oncologist unpleasant. Raise your hand if those visits and the requisite exams produce anxiety. Now let’s have a show of hands for those who find the frequent port flushes to be unpleasant and painful. But we do them anyway, don’t we? We suck it up and get it done, despite the anxiety and the fear and the pain.

My sweet mama was one of those who didn’t like to go to the doctor and who put off going as long as humanly possible. She was tougher than a $2 steak, but she didn’t like to go to the doctor and would find any excuse to skip it. In fact, when she was being eaten alive by ovarian cancer and had a belly so distended she looked 6-months’ pregnant, and when she had raging “tumor fever” from the unwavering progression of her disease, she still didn’t want to go to the doctor.

She would have loved to hear recommendations like that of the ACP, saying “Don’t worry about it. Don’t put yourself through any unnecessary discomfort — physical or emotional.” And I would love for her disease to have been caught sooner, and to have her still here, still with me. Instead, I have a hole in my life and a missing piece in my heart. I have no patience for recommendations and doctors who say it’s ok to skip out on tests/screenings/visits/checkups because they’re no fun.

IMHO, the ACP’s latest recommendation is akin to the “everyone’s a winner” mentality that pervades our society. Here we stand, handing out trophies to both winners and losers and telling women that it’s ok to skip an unpleasant exam. We’re inundated with messages that we “deserve” more — whether it be a house we can’t afford or a luxury item we don’t need — and we forget that life is sometimes unpleasant. Certain aspects of life can be painful. It’s not all smooth-sailing. In a whacked-out effort to avoid hurting anyone’s feelings, we lean too far the other direction. Instead of building ourselves up, these misguided efforts have the opposite effect: eroding self-esteem, self-worth, and self-confidence by failing to learn how to weather storms. suck-it-up

 

 


tentacles

I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.

Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:

“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.

The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”

Cancer does not respond predictably to treatment.

True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.

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Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life,  to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”

This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.

Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”

Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”

She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”

Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.

Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”

Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.


THIS is breast cancer awareness, people

This. the-scar-project

Not this. nfl-watch-nike-breast-cancer-awareness-week

This. emily

This is breast cancer awareness.

The SCAR Project is in town. My town. I went yesterday. What an experience.

I was dilly-dallying around about going and trying to convince myself that I am too busy to take time out of my jam-packed schedule. Truth is, I was a little nervous about going. I was nervous about  seeing the incredibly powerful images and then confronting the emotions they would inevitable bring to the surface. I’m 3 1/2 years out from my diagnosis, yet I know that at any given moment, cancer can upend my “new normal” and bring me to my knees.

I suspected that seeing The SCAR Project images, full-size and in person, would upend me and bring me to my knees. They did.

I’ve seen the images online and in my copy of The SCAR Project book, one of my most-treasured gifts (thank you, Trevor). The book is available on Amazon.com; click here to order your copy.

Seeing them in person, however, is a completely different experience.

The exhibit is housed in a small gallery in the heart of Houston. On my short walk to the gallery I passed this lovely shrine in someone’s front yard.20131023-155312.jpg

I certainly hope I didn’t offend by snapping a quick photo. I don’t see things like this in the ‘burbs where I live.

Nestled into a quaint neighborhood surrounded by bustling businesses, Gremillion & Co Fine Art, Inc., is spartanly understated. The lush greenery surrounding the modern-but-not-out-there building and the pieces of sculpture flanking the gallery speak to the idea of popping inside for a quick fill of art in the middle of the day. 20131023-155031.jpg

I gotta come back in the spring and see this wisteria in bloom.

20131023-155200.jpgSome of the sculptures surrounding the building.

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This gate leads into a little courtyard to the side of the gallery; a serene spot in the middle of the city. 20131023-155130.jpg

Enough stalling. Time to go inside.

There’s a sign on the gallery door that requests that visitors keep their conversations to a minimum and in a whisper because of the gripping, emotional response people have had to the photographs. While some not so intimately acquainted with the beast that is breast cancer might find this intriguing and perhaps even titillating, it did not have that effect on me. I felt certain my initial misgivings about witnessing the photos were true.

A small table filled with programs and copies of The SCAR Project book stands in the entrance. A cut-out window just behind revealed a man eating lunch, and I realized that man was David Jay, founder and photographer of The SCAR Project. I asked the docent if that was indeed him, and she nodded. I told her that I’m a survivor who greatly admires his work. She said, I thought you might be a survivor.

How did she know? What caused her to suspect? Perhaps the majority of visitors to the exhibit are. Or perhaps she read the fear and trepidation in my eyes. Either way, she smiled sympathetically and stepped away. Next thing I know, David Jay is standing right beside me, saying hello. Wow. I told him how much I admire his work and how grateful I am for him telling the real story. Not the “prettied-up, pink ribbon” story. He nodded and said, “That’s why the subtitle of this project is ‘Breast Cancer Is Not a Pink Ribbon.'” Amen, brother.

In the exhibit program, Jay is quoted as saying, “Still, through all of this, there is beauty. Soul. Courage. These are the things which cannot be taken away.”

Jay told me that he never envisioned working on this project, but that after a friend was diagnosed, the project was born. His mission: to show what breast cancer really looks like, especially in young women; to fundraise for research; and most importantly, to empower the women who have been affected and to hopefully allow them to see the beauty, strength, and resilience in the aftermath.

“For as long as I can remember, I have struggled with body-image issues. Losing my breasts and developing thick, red scars across my chest only made matters worse. I could not bear to look at myself in the mirror. I hope that being a part of The SCAR Project will help me to see something beautiful for a change. Maybe it will help me appreciate my body….It has, after all, created and sustained two new lives; it has fought cancer and won. It’s time I started giving it, and myself, much deserved respect.  Maybe if my scars were viewed as art, it would help me to heal.” — Gabrielle, age 30

“The most important part of being photographed was that it made me feel beautiful. It was an opportunity for me to stand tall and strong with my scars and redefine my beauty for myself.” — Emily, age 32

“My challenge has been and continues to be to accept the sorrow, focus on the joy, and remember to share both with the ones I love. Survival is about more than breasts: it is about courage, strength, and the many other attributes that make a woman beautiful.” — Jill F, age 28

Barbie, age 36, served 18 years in the U.S. military before being diagnosed with breast cancer. 1376917173_SCAR-12

In her SCAR Project bio, she says that “a weapon, a FLAK jacket, and a Kevlar helmet didn’t protect from THIS enemy.” She goes on to say that “I am not going to ever get over breast cancer or move past it. I will love with it for the rest of my life. Remission is not a cure.”

Not surprisingly, scars are a recurrent theme among the women featured. “My scars are powerful lines that point to hope, faith, and love.” — Candice, age 30

“Our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but of living.” — Eliza, age 22

Some of the quotes by the women featured are so sad, yet so true:

“Cancer does not discriminate; it doesn’t care who you are.” — Jessica D, age 22

1376917209_SCAR-16“An East-Indian girl, I was a mother to a toddler who fed from cancerous breasts for 20 months. A wife to a husband who left because he feared what my cancer would do to his life. A sister to a man who didn’t know what to say, so said nothing.” — Sona, age 36

20131023-155412.jpg“Cancer took so many things from me, but the one thing I may never get over losing is my sense of security. Blood work and tumor markers allow me to live my life in 18-month intervals, but cancer is an unpredictable beast.” — Toni, age 28

“I lost all of my hair, looked like ET, got my boob hacked off along with 9 lymph nodes, got zapped by so much radiation my skin burned and bled, and will need to cut open my stomach and relocate my fat and muscles to my chest. I think sometimes I am so good at putting on a pretty face and acting all put-together that people don’t realize the extent of everything that breast cancer survivors go through. My scars and words are only half the story. They don’t show the emotional and private struggles that are continuously present.” — Vanessa, age 25

Something else Vanessa said really resonated with me: “I’ve never wanted to be the center of attention, or to be regarded as ‘special’ or ‘brave.’ I don’t need to be pitied or felt sorry for. In life, there’s a beautiful balance of happiness and sadness, awareness and unawareness, acceptance and rejection, blessings and misfortunes. These dualities are the moments that define life.”

Not all of The SCAR Project women survived. David Jay tells the story of Jennifer, age 27, who could not travel to New York for her photo shoot because her cancer had spread to her liver. She wanted to do it, though, and asked Jay if his studio had wheelchair access because she could no longer walk up the stairs. Jay told her, “Just come, I’ll carry you up the stairs if I have to.” She never made it to New York.

Each of the women featured in The SCAR Project has an important story to tell. Each has experienced things that profoundly and permanently changed them. Each faced the terrifying reality of cancer at a young age.

This wall of images represents each woman’s story and each woman’s struggles. It is moving beyond words.  Not just for those of us diagnosed with the disease, but for all of us as human beings.20131023-155333.jpg

As I left the exhibit, I saw David Jay outside, on his cell phone. I waved to him as I walked past to my car. Pulling out of the garage, I thought, I should ask him to sign my program. But I didn’t want to interrupt his phone call. What to do? What to do? Interrupt him. Ask him.

So I did. 20131024-122627.jpg

For more information, go to http://www.thescarproject.org. Follow The SCAR Project on Facebook and Twitter (@thescarproject). Watch the Emmy-winning documentary Baring It All and purchase The SCAR Project book.