No easy choice

I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?

M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.

Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.

The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.

It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”

Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.

M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”

Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.

Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”

Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.

doobybrain.com

doobybrain.com


Our newest spokesperson: Angelina Jolie

Thanks to my friend Marie at Journeying Beyond Breast Cancer for the heads-up on a noteworthy event in the breast cancer world: Angelina Jolie’s preventative bilateral mastectomy.

Yes, you read that right: Angelina Jolie had a preventative bilateral mastectomy. She spoke out on her choice in this New York Times piece. I’ve read it twice and know that I will return to it again and again. Not because she’s a celebrity (frankly, I don’t get our societal obsession with celebs; if anyone can find anything remotely interesting about Kim Kardashian besides her unfortunate maternity wardrobe, please drop me a line. I just don’t get it.).

But I digress.

I will likely return to Jolie’s article because she’s articulate and well-informed about this nasty beast called cancer. She’s proactive, which ladies and gentlemen is what makes or breaks your fight against this damned disease. She advocates for a person’s right to choose the medical care that’s right for them. True, she has money and resources unknown to most people, but her message still stands.

Normally when a celeb comes out with a revelation about cancer — particularly breast cancer — the world takes notice because it’s happening to a celebrity. We get all atwitter about the person rather than the disease and the many ways in which it affects them. It becomes about the celebrity instead of about the cancer. In the case of a celeb with breast cancer, I cringe along with my pink-ribbon sisters when that celeb boasts of having “caught it early” and even worse, waxes poetic about how exciting it is to get “new boobs.” (Exhibit A: Giuliana Rancic. I threw up in my mouth more than once while reading her account of her cancer experience and wonder if she really believes the crapola she shoveled.) Newsflash: “new” does not correlate to “better.”

Jolie writes of losing her mother to cancer at age 56, and how the disease stole from her own kids “the chance to know her and experience how loving and gracious she was.” I get that. My favorite girl was 3 when my mom died, and she has few real memories of her YaYa. There are plenty of stories that have been recounted to form memories, but nothing tangible. mom's funeral

That, my friends, is a tragedy.

Jolie says she tried to explain to her children the disease that took “mommy’s mommy” and that they wondered if the same thing could happen to her. The scariest thing about my own diagnosis was explaining to my kids that YaYa’s cancer — which they watched her die from — was very different from my cancer.

But is it really?

Yes, the particulars are different — ovarian vs breast, stage II vs metastatic — but to a child, what’s the real difference here? It’s an amorphous, scary monster that snatches away the people they love.

Jolie says that “cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.” The best way to combat that powerless feeling is to do something about it. Jolie underwent the BRCA analysis, which tells us if we carry a gene that makes us more likely to develop breast or ovarian cancer.  Her results: an 87 percent chance of developing breast cancer, and a 50 percent chance of developing ovarian cancer.

She goes on to say, “On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.”

For someone in her business, and as someone who is celebrated for her body as much–if not more–than for her charity work, that’s big.

So is the empowerment Jolie speaks of: “For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”

Make your own informed choices.

The majority of breast cancers occur in women with no family history of the disease. That’s one of the many ways this stealthy beast sneaks up on us and takes over our lives. People like Angelina Jolie are helping to change this. She says, “I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”

Living under the shadow of cancer.

Those words will stay with me as I read and re-read her piece.

I expect Jolie to bring her considerable influence to addressing the fact that the cost of the BRCA test (upwards of $3,000) precludes many women from undergoing the test. The test is not always covered under insurance, and the insurance companies will squawk about it being unnecessary if there’s no family history of the diseases. But as Jolie says, that should not stop us from trying. Often it’s as simple as having the prescribing doctor contact the insurance company to assert the need for the test.

Jolie ends her article with this: “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”