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.

20131023-155147.jpg

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.


WEGO HAWMC

day2

 

The WEGO HAWMC is quite a mouthful! WEGO Health describes itself as “social media’s most active online health community — Health Activists. These influencers, organizers, connectors, leaders and contributors are passionate about helping others lead healthier lives.” WEGO Health Activists have thrown out a challenge: the HAWMC, or Health Activist Writer’s Month Challenge. It’s a post-a-day challenge taken on by several bloggers I greatly admire. One of them asked if I was planning to participate, so here we are.

I missed Day 1, so will start with Day 2, which is pretty scrambled logic for this Type-A girl, but part of the challenge is thinking — and blogging — outside of our comfort zones so I guess I’m in.

Today’s prompt:

Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
Yikes. I hate to think of breast cancer as “a condition” but I suppose it is. I certainly don’t think of myself as an activist, but for these purposes I’ll assume I am.
Ok, so introducing y’all to breast cancer. Y’all, this is breast cancer. Breast cancer, this is y’all.
It’s safe to say that everyone knows about breast cancer, thanks to the pink-ribbon brigade, so on to the 5 things you need to know about breast cancer. Those who have it already know. Those who care for/care about someone who has it already know, too.
#1 — “Early detection is key.” Yes, and no. Early detection is important in that it can prevent breast cancer from spreading and progressing to a more complicated prognosis and a less favorable outcome. But it also leads to overtreatment and contributes to our skyrocketing health-care costs.
#2 — “Breast cancer is a “good” cancer. This is rather loaded. Yes, it is “good” in the sense that it occurs in a body part that is nonessential to sustaining life, and in a body part that can be removed, ostensibly also removing the cancer. But let’s face it, no cancer is a good cancer. And while have a lumpectomy or mastectomy is perhaps easier than removing a lung or other vital organ, the aftereffects for women are brutal, both physically and emotionally.
#3 — “Taking Tamoxifen every day for 5 years is a pretty easy way to manage the disease.” Tamoxifen is rough. Its side-effects are numerous, and even if a women suffers just one or two of those side-effects, they’re quite disruptive. And quite sucky. For those of us diagnosed before menopause, Tamoxifen fast-forwards us to the land of hot flashes, night sweats, mood swings, and other lovely challenges. Within days of starting my Tamoxifen, brown spots appeared on my face. My skin grew noticeably thinner while my body tried to grow fatter. My anxiety level soared while my endorphins crashed.   Having to remember to take my little white pill every day stresses me out: taking it ensures these awful side-effects, but stopping it puts me at risk of recurrence. What part of this is easy??
#4 — “Your breasts don’t define you.” True. Very true. This is true for all women, whether they have breast cancer or not. Huge strides have been made in women’s rights and it’s a wonderful thing that society “allows” us to be more than window dressing. But pick up any magazine and look at the ads or watch any random commercial or walk through any suburban grocery store and notice the boobs. They’re everywhere. And they’re big, round, and perky. If we aren’t defined by our boobs, then why is losing them so traumatic? If we aren’t defined by our boobs, then why do more than 300,000 women a year in the United States undergo elective, cosmetic surgery to enhance their breasts?
# 5 — “Being diagnosed with cancer makes you stronger.” Perhaps in some ways it does. I am no longer afraid of needles after the bazillion shots and injections I’ve received, and can now give myself a shot if need be. I barely flinch when the phlebotomist pierces my skin with a wide-bore needle to extract a blood sample. I know that I can endure an awful lot — physically and mentally. But did I need to be diagnosed to become stronger? Doubtful. And that newly gained strength is a pittance compared to the things that cancer costs me — physically, mentally, and financially.

 


“awareness”

In my ongoing rant against Pinktober, I’ve asked the question many times without getting an answer: what does all the breast cancer “awareness” make us more aware of, exactly?

I ask in all seriousness. I know what I think when I see a package of paper towels all decked out in a pink-ribboned wrapper, but I’m curious about the average, non-cancer-infested person. How does breast cancer “awareness” affect those who’ve not personally been waylaid by breast cancer? If I were just some normal person, going about my daily life and I saw an ad in the window of the TGF Hair Salon advertising their “Clip for the Cure” promotion, what would my reaction be? If I were not unwillingly strapped into the pink dress, would the “squeeze a boob, save a life” bumper stickers make me want to choke someone?

When people see breast cancer “awareness” products and services, do they think, “Oh my gosh, women (and men) are suffering from and dying from this terrible disease?” Do they think, “Damn, I’m sure glad I don’t have that!” or perhaps “Why does that damned breast cancer get all the attention?” or maybe even “mmmmm, breasts” in a caveman-like tone?

Apparently there was a time, not so very long ago, in which I was some normal person, going about my daily life. I don’t recall specifically reacting to any breast cancer “awareness” messages or intentionally buying pinked-up crap because I thought it would save some unfortunate woman’s life. I doubt I gave it much thought at all. Even very recently, as I went about my daily life and scheduled my annual well-woman exam, I didn’t think much about breast cancer “awareness.” When my OB-GYN wrote out the orders for my annual mammogram and I made the appointment and I showed up on that day and I changed into a gown and I stowed my belongings in a locker with a key and I waited in that ugly gown in a freezing cold room set up to look like a spa except for the TV blaring some dumb morning show that was most definitely not relaxing, I didn’t think much about breast cancer “awareness.” (BTW, if I ever do go to a spa that has a TV blaring some dumb morning show, I will turn on my heel and walk out.)

When the mammogram tech chatted with me about how I’m young for an annual mammogram and I explained that I’ve been getting one since I was 36 because my mom died of a reproductive cancer, I didn’t think much about breast cancer “awareness.” I expected the report to come back telling me I had dense breast tissue but no changes had been detected from the last year so I was free to go live my life unscathed for another year, until my next mammogram. When it didn’t exactly turn out like that, I still didn’t think much about breast cancer “awareness.” After my last mammogram, as I waited in the freezing cold room once again with the TV still blaring some dumb morning show while the mammogram tech showed my images to the radiologist on duty, I thought not of breast cancer “awareness” but of how much longer that appointment would take because I had a long list of things to do. When instead of being told I was free to change out of the ugly gown and back into my regular clothes, I was called back into the screening room so the radiologist could get a few more images, I still didn’t think much about breast cancer “awareness.” When the radiologist suggested we do an ultrasound in addition to the mammogram, and when her gel-covered want hovered over a certain part of my right breast while she made an upsetting and not-very-well-disguised frowny face, I still didn’t think much about breast cancer “awareness.” When the frowny-faced radiologist declined to answer any of my questions about what she thought she was seeing on the ultrasound screen and when the mammo tech gently patted my shoulder, I didn’t think much about breast cancer “awareness,” beyond being “aware” that this situation had all the makings of a disaster–a really big, really bad disaster.

When my OB-GYN got the radiologist’s report and called me to say I needed to make an appointment with a breast specialist, I didn’t think much about  breast cancer “awareness.” When I called to make the appointment with the specialist and noticed that the name of her practice was Southwest Surgical Associates, I didn’t think much breast cancer “awareness” because I was busy wondering why on earth my OB-GYN had given me the number of a surgeon. When the receptionist at Southwest Surgical Associates said I needed to go ahead and schedule a biopsy, I didn’t think much about breast cancer “awareness” because my whirring brain had not quite caught up with my common sense, which would have told me to panic.

While the breast specialist injected me with lidocaine before she inserted a hollow-cored and very sharp needle into my right breast, then twisted that needle to extract a tissue sample deep within my body, I didn’t think much about breast cancer “awareness” because I was busy going to my happy place to avoid the searing pain that spread across my chest, despite the lidocaine. When the breast specialist, who at that point was just the breast specialist and not my breast specialist, double checked the coordinates on the ultrasound machine that guided her as she scooped out the tissue sample, I didn’t think much about breast cancer “awareness” because I was craning my neck trying to see what she was seeing on that screen. When she was all done and bent down to her little freezer to give me a few ice packs to stick into my bra, I didn’t think much about breast cancer “awareness” because I was wondering if the ice packs were too noticeable to stop me from running into the grocery store on my way home.

When the breast surgeon’s nurse Sharon called me a few days later to make sure I wasn’t driving before she said that the doctor needed me to “put her on my social calendar” I didn’t think much about breast cancer “awareness” because I was consumed with a feeling of dread more palpable than anything I’d ever experienced. When I (unfairly) pressed Sharon to tell me over the phone how bad it was and she back pedaled, I didn’t think much about breast cancer “awareness” because I was picking apart her every word and intonation for clues to how bad this really was.

When I drove to the breast surgeon’s office the next afternoon, I didn’t think much about breast cancer “awareness” because I was instead thinking about how I was going to get ahold of Trevor, who was out of town, to deliver the verdict before he boarded his plane. While I waited in the breast surgeon’s waiting room, I didn’t think much about breast cancer “awareness” because I was wondering whether I’d get out of there in time to go home and grab my kids then get across town–in rush hour–for my cousin’s 60th birthday celebration. When the breast specialist said that the biopsy did not look good, I wasn’t thinking about breast cancer “awareness” because I was wondering if I’d live to see my kids grow up. As the breast surgeon–who went from a breast surgeon to my breast surgeon–told me very matter-of-factly that it was indeed cancer, I didn’t think much about breast cancer “awareness” because I was focused on the pounding of my heart and the feeling of life as I knew it being replaced by a very undesirable alternative. As my breast surgeon laid out the options for ridding my body of its unwelcome visitor, I didn’t think much about breast cancer “awareness” because I was already dressing for battle. When she told me she didn’t want me to make a decision about surgery for at least 5 days, I didn’t think much about breast cancer “awareness” because my brain was full of slash-and-burn thoughts toward this cancer. When Trevor said he was ditching his business trip and catching the next plane out, I didn’t think much about breast cancer “awareness” because I was busy convincing him to stay, because if he changed his plans and aborted his trip, I could no longer operate under the (temporary) assumption that everything was ok.

While I worked the phones and manipulated my calendar to get through the myriad scans and tests required to see if this cancer had spread to other parts of my body, I didn’t think much about breast cancer “awareness” because I was still trying to make sense of the fact that at the age of 40, I was a cancer patient. As I researched oncologists and made appointments for them to review my case, I didn’t think much about breast cancer “awareness” because I was trying to wrap my head around the fact that I had a breast surgeon and an oncologist. Sitting in the oncologists’ waiting rooms, I didn’t think much about breast cancer “awareness” because I was focused on the fact that every single person in those rooms was a good 20 years older than me, and I was pleading with the powers that be to please, please, please let me live another 20 years.

As I scheduled my bilateral mastectomy, I didn’t think much about breast cancer “awareness” because I was busy counting exactly how many days there were between the surgery and the last day of school, knowing I would need as much child-free time as possible to heal. When I explained to my kids what was going on, I didn’t think much about breast cancer “awareness” because I was desperately searching for the right words to convince them that they weren’t going to watch me die from cancer they way they’d watched my mom die from it.

Healing from the surgery that left me battered, bruised, sore, scarred, and very, very flat (and not just in my chest), I didn’t think much about breast cancer “awareness” because I was busy emptying the 4 JP drains that sprung from my body and tugged and hurt like hell. As I searched in vain in my closet for something, anything, that might make me feel good about myself when I put it on, I didn’t think much about breast cancer “awareness” because I was preoccupied with wondering if I would ever get used to my new profile.

And when the post-mastectomy infection took over my body and once again turned my life upside down, I didn’t think much about breast cancer “awareness” because I was trying rather hard to stay alive. Upon being hospitalized for 9 days straight just 3 weeks after my mastectomy, I didn’t think much about breast cancer “awareness” because I was busy getting sicker and sicker while the doctors tried to keep me from going septic. When I was hospitalized a month later and then again 3 days after that hospital stay, I didn’t think much about breast cancer “awareness” because I was consumed with worry about whether the infection could be contained. As I endured 267 days of powerful antibiotics, I didn’t think much about breast cancer “awareness” because I was nauseated and utterly beaten down. When I decided to undergo DIEP reconstruction to get a blood supply to the oft-excavated and much-ruined chest wall, I didn’t think much about breast cancer “awareness” because I was planning how to endure a 5-to-7 night hospital stay, including a night in the ICU. When I left the hospital with 6 JP drains and a fragile peace between the transplanted blood vessels and their new host site, I didn’t think much about breast cancer “awareness” because I was on high alert for flap failure. As I recovered from that surgery, I didn’t think much about breast cancer “awareness” because I was, well, recovering from a pretty intense surgery. As I endured two more revision surgeries, I didn’t think much about breast cancer “awareness” because I was railing against the much-promoted fallacy that “at least you get new boobs.”

As I began life as a breast cancer survivor, I didn’t think much about breast cancer “awareness” because I was busy trying to live my life as a breast cancer survivor. With the passage of time and the re-introduction of non-cancer-related things to my life, I didn’t think much about breast cancer “awareness” because I was trying mighty hard to get back on track. As each cancerversary approached–date of diagnosis, date of mastectomy, date of infection, date of reconstruction–I didn’t think much about breast cancer “awareness” because I was thanking my lucky stars that all that was behind me. Then as I realized that “all that” may well be “behind” me but it’s always, always, always going to be a part of me, I didn’t think much about breast cancer “awareness” because I was busy feuding with the unruly monkey on my back. As thoughts of recurrence snake through my subconscious on a regular basis (say, every.single.day), I don’t think much about breast cancer “awareness” because I’m way too busy talking myself down off the ledge. When the inevitable thoughts of “why me?” enter my head, I don’t think much about breast cancer “awareness” because I’m committed to not RSVPing to that pity party. While I’m working my way back to my former state of fitness and wholeness at the gym and am surrounded by perfectly round, non-cancerfied breast implants, I don’t think much about breast cancer “awareness” because it takes all my energy to not feel really bad about my post-cancer body. As I gear up for the thrice-yearly oncology appointments and the biannual checkups with my breast surgeon, I don’t think much about breast cancer “awareness” because I’m busy, very busy, following my dear friend Amy’s advice of “don’t borrow trouble” (yet those pesky thoughts of “what if” are very determined to infiltrate my postive-thinking brain).

While I spend a whole lot of my time not thinking much about breast cancer “awareness,” the current culture of Pinktober makes it damn near impossible to not think about it, multiple times a day. Open the newspaper and see the Wacoal ad. Flip on the TV and see pink splattered all over NFL stadiums. Drive down the road and see inane bumper stickers and their infuriating references to the ta tas and the boobies and the girls. Go to the grocery store for necessities and run smack-dab into a sky-high pyramid of pink-labeled Campbells soup cans, which more than likely are chock full of BPA, which has been shown to cause cancer. While in the store, run across a woman wearing a ridiculous t-shirt and accost her for doing so. Tune in for the presidential candidates’ debate hoping to hear a reference to a plan to confront the breast cancer epidemic but come away with nothing but a watered-down homage by the First Lady and the first lady wannabe.

After all this, my question still stands: what does all the breast cancer “awareness” make us more aware of, exactly?

 

 

 

 


If not Komen, then who?

Because it’s Pinktober, the month for breast cancer “awareness,” you can’t swing a cat without hitting some form of pink merchandise allegedly deemed charitable and “for the cure.” Now, before all you cat lovers get up in arms, I wouldn’t really swing a cat, it’s just an expression from my neck of the woods. I’m not a cat person and have never had one as a pet, but I believe in animal rights for all critters, including cats.

Before I was diagnosed with the dreaded disease and in the early days of my cancer “journey,” when I thought of BC charities, I thought of Susan G Komen for the Cure. It wasn’t until I became better educated, as a member of club to which I did not want to belong, that I learned  how shockingly little of Komen’s resources actually go toward “the cure.” The much-beloved blogger Rachel Moro of The Cancer Culture Chronicles deserves the credit for my education; to see how beloved she was, click here. Sadly, Rachel died from metastatic breast cancer in February at age 42. Words fail me when I try to explain how instrumental and important Rachel is (present tense very much intended) in the ongoing march toward transparency in BC charities and in dethroning Komen as the go-to breast cancer charity.

Rachel was tireless in her efforts to remove the emphasis from awareness and place it where it belongs: on research. She wrote so eloquently and so passionately:

Education, screening and treatment won’t “cure” my cancer.  Sure, by being “educated” I might be able to find out more about my particular type of breast cancer. By being “screened” I might be able to see if my cancer has spread.  By being “treated” I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can “end breast cancer forever” is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period. Spending anything less than the bulk of its resources on research, clearly does not support Komen’s mission of ending breast cancer forever.

I’ve said before that while Komen has done much to eliminate the shame and scandal that once was associated with breast cancer, in the 30 years that the organization has been working “for the cure,” not much has changed. 30 years. No cure. Nothing even close to a cure.

The statistics are alarming. Being diagnosed with cancer is scary enough, but to also learn that advancements toward a cure are nonexistent is terrifying. The American Cancer Society estimates for 2011 predicted that some 230,480 women would be diagnosed with an invasive breast cancer, and an additional 57,650 women would be diagnosed with an in situ breast cancer. For the uninitiated, in situ breast cancers are located within the milk ducts (ductal carcinoma in situ, or DCIS) or breast lobules (lobular carcinoma in situ or LCIS), in the same spot the cancers began. Invasive breast cancers are those that originate in the ducts or lobules but have broken through to invade surrounding breast tissue. The majority of breast cancers are invasive, and many women, including yours truly, find themselves with both in situ and invasive cancers, both at the same time; sometimes in the same breast, even.

The ACS reports that since 2002, breast cancer incidences rates have remained relatively stable. So in the 30 years that Komen has been promoting its pursuit “for the Cure” and in the last decade of ACS records, not much has changed. What needs to change is the shift from “awareness” to research. As Rachel so astutely pointed out, the best path “for the cure” is through research. What causes breast cancer? What makes it recur? How can it be prevented?

Now that we know that Komen hasn’t really done all that much toward finding a cure for breast cancer, the question becomes, if not Komen, then who? My blog friend at I’ll Drink to That raised an important question in a comment to this blog post when she asked, “Who should my money go to? I don’t want it to go to pink socks for football players, or stupid tshirts or pink nail polish – I want it to make a difference.”

Who should my money go to? Excellent question. The short answer, IMHO, is anyone but Komen.

And here, ladies and gentlemen, are some ideas.

Research-based charities: You’ve got the heavy-hitters, like  MD Anderson, right here in my fair city. There’s also The Dana Farber Cancer Institute in Boston, and Memorial Sloan-Kettering Cancer Center in New York City. Those 3 links take you to each org’s donations page.

Beyond the hospitals, there’s the Dr Susan Love Research Foundation. This is one of my faves, and I’ve blogged about it here and again here, because the focus is on the research that will stop breast cancer before it starts. What a dream come true! Breast Cancer Action is a fantastic organization founded by BC survivors whose goal is to “inspire and compel the changes necessary to end the breast cancer epidemic.” The Breast Cancer Research Foundation was founded by an executive from the Estee Lauder company, and the foundation funds nearly 200 scientists working on the breast cancer puzzle. The National Breast Cancer Coalition has declared January 1, 2020 as its deadline for ending breast cancer forever. I’d like to see that goal realized.

Local breast cancer charities: Google “breast cancer charity” and your city. You should get several hits that aren’t Komen-related. My favorite in my city is The Rose. Here, insured women and women who can pay for services help offset the costs for women who are uninsured or who cannot pay. It’s been estimated that women with insurance have breast tumors diagnosed when the tumors are about the size of a raspberry. Women without insurance are diagnosed with tumors the size of a tangerine.

Site-specific breast cancer charities: One of the most intriguing is My Hope Chest, which offers financial assistance to women for reconstruction-related expenses. Even with insurance, reconstruction is expensive. Metavivor focuses on research for metastatic breast cancer, or BC that has spread. Look Good Feel Better uses the idea that if cancer patients look more like themselves–and less like cancer patients–during treatment, their self-esteem will increase ans so will their ability to cope.

There are ways to help beyond spending money, too. If you are considering buying a pinked-out product that claims to help fight breast cancer, read the fine print to see which charity is receiving proceeds. If it’s a charity that isn’t actively working toward research, perhaps you can select another product or skip it altogether. Volunteer at your local hospital or breast screening center. Speak up: if the preponderance of pinked-out product placement bugs you, say so. Tell your grocery store manager that you don’t like it. If you come across campaigns that seem more about the boobs than about the disease, contact the purveyor and say so. Spread some cheer to someone on the cancer “journey” by reaching out to them, regardless of how well you know them. A text, email, or greeting card saying “I’m thinking about you and I support you” is a small effort with big impact. Join Dr Susan Love’s Army of Women in which women–with and without breast cancer–of all ages and ethnicities can participate in a variety of studies & surveys.

And this concludes our lesson on if not Komen, then who? Class dismissed.


Cancer is such a bitch

Yesterday I was picking up a prescription at Walgreens — finally one that has nothing to do with breast cancer or the post-mastectomy infection that plagued me for more than a year — and I smiled to myself as I waited in line behind the senior citizens getting their Lipitor and the mom with 3 small kids getting her flu shot (good idea, with those little snot machines attached to her every appendage, said the germophobe in me). I smiled to myself despite the fact that as soon as I walked in the door I was confronted by the display of “pink ribbon products” designed to “raise breast cancer awareness” and “help save a life.” Quotation marks very definitely mine, and intended to convey the maximum amount of snark possible.

I smiled in spite of having passed the pinked-up display of nail polish, glittery lip gloss, pink-ribbon bedecked emery boards, and “hope, faith, and a cure” shower caps (how in the world have I managed without one of those?). I smiled to myself because I was upright, in line at Walgreens under my own steam, having driven myself on a brilliantly sunny day without help from anyone. While my knee is still in recovery mode from the most recent repair, I’m for the most part healthy and able-bodied.

I’m healthy and able-bodied and going about my routine on a very ordinary day with no surprises like finding infection-riddled, 3-inch blisters that were hanging from my mastectomy scars like stalactites hanging from a cave wall. Like the sharp pain that literally felt like a knife blade stabbing through my chest wall as the nerves tried to regenerate after being sliced & diced, post-mastectomy. Like the shock of having caught a glimpse of my new profile in the glass of a store window. Like the pulse-pounding, breath-stealing fear of recurrence that plagues me and other cancer warriors on a regular basis.

No, no surprises yesterday as I waited in line at Walgreens. Instead of surprises, I felt a sense of happiness. A sense of calm. A sense of — dare I say — normalcy. Just an ordinary woman on a routine errand to pick up an RX for low thyroid. I’m far removed from the multiple trips a week to Walgreens that were necessary during the infection phase, and now that I get my cancer-related maintenance meds through the mail, Walgreens is not a place I make an appearance on a thrice-weekly basis.

I was a happy girl as the pharmacist handed me my new prescription, which will hopefully kick-start my lazy thyroid into gear so I can manage to not collapse at 8 pm every night like a cranky toddler. I was happy and calm and normal, until I swiped my credit card and the little machine asked me if I wanted to donate to the Susan G Komen for the Cure. There was the infamous pink ribbon logo atop neat little boxes offering a $1, a $5, a $10 or a $50 option to add to my pharmacy tab.

And just like that, my ordinary day turned on me.

This, my friends, is why I hate October. This is why pinkwashing makes me see red. This is why I rant and rail in this blogspace about the messed-up system that has deemed an entire month for “awareness.”

I AM AWARE OF BREAST CANCER.

Whew, I feel a little better. I wanted to do that in Walgreens yesterday, but I did not. I did not curse, stomp my feet, smash a single thing, or whack a single person. And for that I would like a medal. Or a trophy. Or a cold beer.

I’m glad that the grand poohbahs who run the Walgreens corporation place an emphasis on charity. I like charity. I think charity is a good thing. But come on, does it have to be Komen, and does it have to be so in my face all month long?? In all fairness, it’s possible that Walgreens does shove other charities down customers’ throats in other months of the year and this particular customer hasn’t noticed. But I’ve swiped my card at the pharmacy window many, many, many times at Walgreens and never been accosted by a “donate now” screen on the little machine. I’m quite certain I was swiping my card through that same machine many times the last 2 Octobers and did not see Komen with its hand out and its “Remember you had cancer, lady” banner flying.

Trevor and I had a lively discussion last night, and again this morning, about the whole pinkwashing/Pinktober/Komen/awareness issue. The course of the conversation ran from why all the pink makes me crazy, how unfair it seems that other cancers don’t get so much attention and hype, how the awareness idea has gone wrong, and which causes are worthy of pink dollars. The consensus was this: the time for awareness has long come and gone. We are all well aware of breast cancer. Komen did great things for breast cancer, and the awareness, in the early days. Members of the pink ribbon club owe Komen a debt of gratitude, IMHO, for de-stigmatizing the disease and for making it culturally acceptable to talk about breasts in a medical context. But there are many, many other deserving and hard-working charities that do more actual good for the women and men who suffer from breast cancer. I’m happy to see that some of those causes are gaining attention and getting a piece, or a few crumbs, of the Komen pie. However, we have a long way to go, which is why I’m compelled to yell my head off in this little blog about things like how precious little of Komen’s huge budget actually goes toward research. How infuriating the pinkwashing pandemic is to those of us who’ve walked miles and miles in pink shoes. How the blatant sexualizing of breast cancer makes me want to throw up and punch someone at the same time. How seeing a grown woman in a “Save the Tatas” shirt causes me to go all Serena Williams on her in the grocery store.

This is the reality of October for breast cancer survivors/warriors/victims/patients. And it stinks. I find myself counting the days until this month ends. That it’s also the month in which my sweet mama died from the insidious ovarian cancer that stalked her for years just adds to the misery. What I wouldn’t give for one day, just one day, in which cancer didn’t smack me — and millions others like me — in the face. Even on an ordinary day, cancer has the ability to knock me senseless and dare me to right myself and keep on keepin’ on, yet again. Cancer is such a bitch.

 


Pinktober is making me crazy…for realz

It’s not just an excuse to go postal or blow off some steam, it really is making me crazy. The prolific presence of Pinktober is making me nuts. I’m seeing red (of which pink is a derivative, I suppose). The other day, a woman in the grocery store was sporting one of the worst pink offenders, IMHO, the “Save the Tatas” shirt. I saw her and her offending shirt in the produce aisle and felt a sick feeling in my stomach. I was barely in the store and was already being thrust into the belly of the beast. Just walking in the store, I was accosted by a huge display of “awareness” crap — flower arrangements, helium-filled balloons, potholders, even pink-ribbon bedecked cakes, for cryin’ out loud. Sheesh.

Do those of us who have tangled with this damn disease really need to run the gauntlet of reminders of said disease just to get into the grocery store? Sheesh.

Maybe the display of pink junk that greeted me at the store set me up so that when I saw the “Save the Tatas” shirt, I was primed and ready for a tussle. I tried to be respectful. I did. I entered into the conversation with every intention of getting her point of view. I’m curious, genuinely curious, as to why a grown woman would sport such a message across her chest. So I pointed to her shirt as our paths crossed by the giant pile of pumpkins (which thankfully had not been painted pink). I asked her if she’d had breast cancer. Just curious. She said no, she has not had breast cancer. Oh, so you know someone who has? I asked. No, but she bought the shirt to support breast cancer awareness.

Ah, yes, “awareness.” More “awareness.” The “awareness” we all so desperately need.

The interrogation continued as I asked her if she was aware of how buying the shirt helps, and what, in her opinion, does “awareness” even mean? She didn’t really have an answer for that. Huh.

I pressed on, like a dog with a bone, and asked if she was aware of which charity received proceeds from the purchase of that shirt. Again, no answer. At this point, she was probably wondering how to contact security in the grocery store. I concluded our little chat by telling her that I have had breast cancer, and I do know many other women who have as well, and that those of us in the pink ribbon club don’t care for those shirts because some of us were put in the unpopular position, through no fault of our own, of not being able to “Save our Tatas,” and that seeing such messages serve as a stark and unwelcome reminder of that most unpleasant fact.

She said she’d never thought about that. She was not aware of that.

Huh.

I bet she’s also not aware of the fact that once you lose your tatas, each and every glance downward or glimpse in a mirror is a smack in the face. That even after reconstruction — or multiple reconstructions — those tatas will never be the same. Some women end up with a version they like better. Some end up with a version that makes them sad each and every time they see that new, not-so-improved version.

She and I parted ways, me feeling marginally better for having unburdened myself, her probably feeling like she needed to go home and lie down. Hopefully she went home and threw that damned shirt in the garbage, where it belongs.

Then I hear that our local professional soccer team, the Houston Dynamo, is hosting an “awareness” event of their own tomorrow. The first 5,000 fans at the Breast Cancer Awareness Match will score a mini pink soccer ball. Sweet.

But this is how they choose to market the event.

Not so sweet.

Tell me, please, anyone, what the scantily-clad cheerleader in the pink attire has to do with breast cancer? Or is that what it takes to get people to attend the event? Questions, people–I have questions!

I had to dig pretty hard to find any info on the actual event. While these images are splashed all over the web, details on what the event really is all about remain elusive. The Dynamo website shows a much less exciting image:

houstondynamo.com

But when I clicked on the link to bobby boots breast cancer/Dynamo Charities, I got nowhere. The computer told me that the page I sought could not be found. Bummer. My next question: is the bobby boots breast cancer image above, with the philanthropic player (who I assume is Bobby) and the soccer-cleat-wearing pink ribbon, that much less effective than the perky cheerleader in her push-up bra? Do people really care less about this dreaded disease if it’s marketed without actual images of breasts?

I was still full of questions when I saw this on a car:

Great, here we go again.

This time, I didn’t accost the person sporting the offending message because the light turned green. But I wanted to. I wanted to say, Can you imagine in your wildest dreams putting sticker on your car that says “balls! support testicular cancer research!” Or “ovaries! egg-makers or silent killers?” No, me neither. As the shirt says, It’s all about the boobies. 

It certainly isn’t “all about the boobies” — it’s about a woman’s life, and how BC threatens and too often takes her life. I’m still waiting for an explanation of how any of this boobie culture makes any difference in the “fight” against breast cancer. If you see a guy wearing a shirt like this, does it enact any change whatsoever in the BC arena? 

I wonder how he would feel if I wore a shirt saying “PROSTATES make me happy”? I can’t even find an image of such a shirt because guess what — it doesn’t exist! No, instead the prostate cancer “awareness” shirts look like this:

and this:

“I Wear Blue for My Dad” conveys a slightly different message than “Save Second Base.” It says the focus is on the person, not the body part. The take-away message here is that sexualizing a devastating disease does nothing for those who suffer from it.

Well, wait a sec — I take that back. Sexualizing a devastating disease does do something for those who suffer from it. It makes them feel bad. Really bad. It makes them mad. Really mad. It makes them want to accost random people in the grocery store or at the bank and set them straight. It makes them have to confront the fact that at this very moment, they may be crossing that bridge from “survivor” with NED to stage IV without a cure. I will never, ever forget the feeling of utter fear when the first oncologist I consulted said once a cancer comes back, no matter what stage it was upon original diagnosis, the recurrence sends you straight to stage IV and you’re considered incurable. Not that you’re going to die from it, as many stage IV cancers can be managed, but treatment is ongoing, as in, for the rest of your life (however long that will be).

That, my friends, is the reality of breast cancer. Not a cutesy slogan. Not a titillating (pun intended) t-shirt. Not an overtly sexual bumper sticker. It’s not about the boobies. It’s about my life.

 


A pretty pink piece of mail

Because it’s October and we’re awash in all things pink, I got this cute little notice in the mail from my health insurance company. 

Of course it got my attention, amidst the heaps of junk mail, because it’s pink and because when I see a pink ribbon, my brain immediately goes into fight or flight mode as visions of Komen’s money-grubbing dance in my head.

Ok, that’s a bit harsh; Komen isn’t just about money-grubbing. But Pinktober does that to me. I jump to conclusions and get all snarky.

I sat down to read this pink piece of mail, expecting to roll my eyes at yet another meaningless and offensive bit of  “awareness” propaganda. Plus, the headline imploring me to put myself first made me think I had free reign to be totally selfish and say, go get a mani-pedi instead of cooking dinner for my people. I had to read more!

Sucked in by the pink haze and the make-me-be-naughty headline, I read on. Page 2 asked a pressing question:

Why, yes, as a matter of fact, I did know that. I also know that mammograms aren’t all that effective at detecting a lump in one’s breast, as I’d been having a mammo every year and at various levels for 5 years before my lump was detected, and even then, it wasn’t detected by a mammo at all but rather by my uber-vigilant OB-GYN, who I credit with saving my life, or at least saving me from a much more protracted and undoubtedly less pleasant cancer “journey.”

Oh, boy, there goes the snark again.

I love the images used in this: the radiantly healthy, young, smiling patient with her gown perfectly draped around her non-cancer-infested body. The state-of-the art screening equipment. The competent and in-control technician. And last but not least, the perfectly round, plump, healthy breast on the screen.

Sigh.

Now I’ve moved straight from snarky to sad, and I’m only on page 2.

Page 3 gets a little more serious, but I’m still sad. That image of the round, healthy breast stays with me. I like that page 3 imparts a serious note, taking care to provide a few snippets of facts & figures to prod one but not scare the bejeezus out of one. The sympathetic tone of, “We know you haven’t scheduled your mammo and we understand, you’re busy taking care of everyone under the sun” is really effective. It’s also very reassuring the way the text suggests “Hey, if the worst does happen and the mammo we suggested you schedule shows that you do in fact have breast cancer, it’s ok; you’re good. We caught it early so you’ll survive.” (You’ll survive, but  your life, your wallet, your mind, and most of all, your body will never be the same.)

It goes on to list the signs & symptoms of breast cancer, just in case you aren’t sure. And another suggestion to schedule that mammo today. I love the line about how it won’t cost anything but time. I guess they decided against full disclosure, and nixed mentioning that the smooshing of those nice round breasts is  uncomfortable, and that the hospital smell and presence of nightmare-inducing germs everywhere may make you want to run screaming from the building, it might freak out the intended audience and one might decide to chuck the pretty pink pamphlet onto the recycle pile without a backward glance.

I did a double-take at the statistic at the bottom of the page: Did I know that BC claims last year totaled $4.3 million? No, I didn’t know that. That’s a lot of cake.

At first blush, I thought: what kind of nutter is running the accounting office, if they don’t know that I’m one of those claimants? How can they overlook the fact that I’m likely responsible for a quarter of their 2011 claims costs? I’d think that my name is at the top of the list, perhaps with a yellow highlight or maybe an alarm bell that rings, or who knows, a nuclear-reactor type meltdown when my name and ID number are associated with yet another costly claim for United Health Care and Baker Hughes. It’s been a while since I’ve kept an eye on the amount of my claims, but it’s safe to say that it’s up there. Not crazy expensive, like the dresses Ann Romney continues to wear for public appearances, seemingly clueless to the fact that this thing called the Internet exists and it’s easy to check on which designer created her frock and how much it cost, all while she and Mitten claim to be regular folks who don’t consider themselves filthy rich.

Oh good grief, the snark is back. Let me go back and look at that sweet image of the round, healthy, never-to-be-seen-again-on-my-body breast.

Ok, all better.

Thankfully, before I could call the health care PR folks and cuss them out for sending me–me, of all people–a mailing asking if I knew how much my claims had cost them, the Hubs saved me from embarrassing myself and owing a hard-working corporate soul an apology. Just as I was getting really worked up about how in blue blazes could they NOT KNOW that I’ve made hundreds of thousands of dollars in claims because of breast cancer, the Hubs reminded me that we didn’t have United Health Care during the shitstorm of mastectomy, infection, hospitalization, endless labwork, multiple stabs at diagnosing that damned infection, surgery, surgery, surgery, hospitalization, not one but two infectious-disease teams, at-home IV antibiotics, debridement, debridement, home health care, more debridement, more at-home antibiotics, wound vac, the Big Dig aka DIEP reconstruction, ICU hospitalization, more antibiotics, 2 revisions to said reconstruction, and at least 100 visits to the plastic surgeon, yadda yadda yadda.

My bad.

United Health Care got me once the bulk of my spending frenzy was done. No wonder they send me such nice, pretty mail. Whew, I am SO glad I didn’t get on the horn and issue a blistering diatribe to the first person to answer the 800 number. That would have been soooo embarrassing.

The pinky mail wraps up with one final statistic:

 

I guess I should be moved by the fact that United Health Care is looking out for the many women who are eligible for a smash-&-snap but who didn’t schedule one last year. And I am. Yes, I know that it’s in UHC’s best interest to have their insured women get their mammos, because screening is cheaper than mastectomies and chemo and radiation. I do like the gentle statistics employed in this publication–nothing too in-my-face, not all gloom & doom, no hint of “do this now or burn in BC hell.” I appreciate the assumption that I’m a grown woman who can decide for myself; personally I’m not one who needs to be told twice when it comes to doing something necessary but unpleasant, but I can forgive the repeated pleas to schedule that mamno now, because not everyone shares my “get ‘er done” mentality, and most women have less flexibility in their schedules than I.

This piece of mail struck the right balance of “you need to do this even thought it might uncover your biggest fear and thrust you headlong into a medical nightmare” and “that said, we’re here and are gonna take care of you.” I give high marks to the copywriters who straddled the idea of scaring us enough to schedule that mammo but not keeping us awake at night wondering what it will be like.

Before I was diagnosed, I didn’t give much thought to breast cancer. Sure, I saw the pink ribbons everywhere and thought the women whose bald heads were under cover of a pink bandana are mighty brave (I still do think that, BTW). Even when I got picked for the melanoma lottery, and even when my sweet mama died a not-so-pleasant death from a reproductive cancer at the still-too-young age of 67, I didn’t think much about breast cancer. I still didn’t think much about it when my awesome OB-GYN learned of my sweet mama’s death and said let’s go ahead and get you started with a baseline mammogram, even though you’re nearly 5 years away from the recommended screening age. Every year my mammo came back funny (not funny ha-ha but funny peculiar, because there’s not a damn thing funny about a funny mammo). I still didn’t think about breast cancer. The radiologists chalked it up to dense breast tissue and said, let’s see what’s going on next year. Then the next year, the images still looked funny, and maybe even a bit more unusual, so I saw a breast specialist and endured a series of biopsies. And still, I didn’t think about breast cancer. That breast specialist said the biopsies didn’t show anything overtly cancerous, and I was young for the cancer beast to come calling, so let’s just keep an eye on it and continue the annual screenings. Even then, I didn’t think much about breast cancer.

Fast forward to the present day, as I sit with a well-done mailing imploring me to schedule a mammogram.

Now I feel the need to call United Health Care, not to cuss anyone out, but to tell them thanks for the pretty pink mailing, but to kindly remove me from the distribution list for future mailings. See, I won’t be scheduling a mammogram this year, or any year in the future. Instead, I go see the unflappably darling Dr Dempsey twice a year for a chest and lymph node ultrasound. It’s not a breast ultrasound, because my breasts contain no breast tissue. Nope, they are made of 100 percent belly tissue, and breast tissue and belly tissue look totally different in a mammo. As far as I know, there’s not a smash-and-snap procedure for the belly. In addition to my twice-yearly screening by my favorite breast surgeon, I get to see my cutie-pie oncologist three times a year. Blood work checks my tumor markers and hormone levels, and I submit to a thorough exam and lecture about my champagne habit.

Maybe I will call United Health Care, to tell them that I appreciate them putting out such a fine piece of mail. The best part about the mail? Not once is there an image like this

ort this

or this 

or this

or this

or this

or this

or good-golly-miss-Molly this

And for that, I’m grateful.