One of the many hard truths

Posted: August 12, 2011 | Author: | Filed under: breast cancer | Tags: , , , | 9 Comments

It’s been a while since I’ve seen my dear friend and most beloved surgeon. He’s been busy this summer traveling and I’ve been busy avoiding his office. Not because I don’t love him and his staff–I do–but because the longer the gap in between appointments, the more I can pretend to be normal post-cancer.

Or so I thought.

I’m learning the hard way that there is no “normal” post-cancer. Most people (myself included) have the impression that once you’re diagnosed,  have surgery, and complete treatment, you’re done with cancer. But you’re never done. This is one of the many hard truths about cancer: you’re never done.

Three-fourths of the way through my 2-week vacation, my thoughts more regularly return to cancer. And surgery. When I first arrived at Salisbury Beach, I thought, FINALLY! I’m here, I’m on vacation and can take a much-needed, eagerly anticipated, and well-deserved break from cancer. I’d thought of little else in the days leading up to my vaca and was ready, oh so ready to get on the plane and be there. 

It’s been great — good weather, huge waves, plenty of cocktails & lobster, and the company of friends who’ve become family. I missed all this last year because of that damned post-mastectomy infection, and I was determined to make up for lost time this year. And I have. Yet my brain isn’t entirely on vacation, and as I’m soaking up the sun and relishing the cool east wind, my brain says “Whatach think about your upcoming revision surgery, missy?”

I don’t want to think about it. I’m on vacation. I should be thinking about what to drink next, or whether to get the 1-pound or 1.5-pound lobster. Yet I do think about it. The brain prevails, and my thoughts turn from all things beachy to thoughts of yet another surgery. While the upcoming surgery is a good one in the realm of surgeries, it still means arriving at the crack of dawn, being assaulted with the dreaded hospital smell, enduring endless digging to find a non-wiggly vein for the IV, undergoing anesthesia, coming out of anesthesia, and starting yet another recovery process.

A couple of months ago when I scheduled the revision, one of my wise friends said don’t you think you might want to do this after the kids go back to school? I said hell to the no, I want to get this done ASAP and get on with my life; I don’t want to wait even one more week because I want to be done. But now I know that I’ll never be done.

Yes, I will get to a point in which I no longer have surgeries and revisions and procedures on the horizon, but I’ll never be done with cancer.

Thoughts of the “big C” will infiltrate my brain here, there, and everywhere. On vacation. In the grocery store. On the tennis court. At the baseball field. In my bed, while I should be sleeping but instead am thinking. About cancer. 

I woke up the other night–on vacation, mind you, with the windows open to the cool breeze and the sound of the crashing waves–thinking about cancer. Even when I’m sleeping, those thoughts are in my head. As my revision surgery approaches, I find myself with the same apprehensions I’ve had before every surgery I’ve had since my diagnosis. I may be nearing the finish line in terms of procedures required, but my thoughts refuse to budge. Instead of getting closer to being done, I realize there’s no such thing.

The SCAR Project

Posted: May 19, 2011 | Author: | Filed under: breast cancer, cancer fatigue, infection, Surgery | Tags: , , , , , , , , , , , , , , , , , , , , , | 20 Comments

duggal.com

Listen up, people: this is really important.

If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.

The project’s acronym stands for “Surviving Cancer. Absolute Reality.”

I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”

And how.

one of the many "pink ribbon" cards I've received

I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.

I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic.  I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis.  The SCAR Project is following suit.

As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.

One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”

We’ve come a long way.

But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.

The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.

When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.

Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it.  Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.

dailymaverick,.com

Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:

“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”

Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.

lipmag.com

I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.