Lisa Bonchek Adams and Cancer Wars

A couple weeks ago there was a notable controversy in the world of cancer and social media. A husband and wife, both journalists, wrote two separate articles in popular media that questioned the choice of stage IV breast cancer patient Lisa Bonchek Adams’ decision to tweet through her experience. The articles, published in the Guardian and the New York Times, respectively, weren’t overtly nasty but they did call Adams’ tweets things like “the equivalent of deathbed selfies” and say that it may be more heroic to die quietly than to fight cancer to the death.

The Guardian article, by Emma Keller, has been removed, but here is an editor’s note about it. The husband, Bill Keller’s, article is here.

And a wonderful Time Magazine piece about the whole thing can be found here. I wholly agree with one of this article’s points – that if you don’t want to read Adams’ tweets, you don’t have to.

I don’t have anything wildly intelligent or insightful to add to this conversation, but it’s worth sharing. I find there to be so much cancer-shaming in this world – people telling others that they are somehow doing things wrong or making others feel bad or whatever. Heck, I did it myself in the post about the video of the woman who danced before her mastectomy. I think it’s natural for humans to do this, and though I’m not thrilled about it happening in ultra-public forums such as New York Times, I do realize that this is the age of the Internet when everyone has a wide-open land in which to share their views.

Ultimately, everyone’s entitled to their own opinion. Remember my new motto – “feelings are never wrong.” But sometimes, especially if those feelings might hurt others, it’s best to keep them to yourself. And even BETTER than that, is to dig deep within yourself and try to accept that everyone is different and everyone deals differently, and not judge others too harshly if they choose a path that is not the same as yours.

Can’t we all just get along?!? In conclusion, here’s a T-rex covered in snow.

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On Angelina Jolie’s Double Mastectomy

Okay, fine, I have to say something. First, I applaud Jolie for writing a very good piece in the NY Times calmly and rationally describing her decision. I think this is really going to boost awareness about hereditary breast cancer, and that is a good thing!

On the other hand, I have already seen and am afraid of more people being quick to judge and make conclusions without the correct information. My best piece of advice for everyone is to EDUCATE YOURSELVES and make sure you aren’t blindly following the news or listening to moronic website comments. BRCA gene mutations are serious business, as are preventive surgeries. There is so much information out there that is easy to find (visit facingourrisk.org, for instance), so there is no excuse for ignorance, vitriol, or fear-mongering.

This video is my oncologist, Dr. Kaltman, from GWU Medical Faculty Associates talking about Jolie’s decision and BRCA mutations. I am posting it not to advertise GWU (though I do love my onco), but to provide some straightforward information.

Before I step off my soap box, I also want to admit that I’m angry. I’m angry because I know Jolie had the best doctors money can buy and I’m sure her reconstruction will be flawless so she can look perfect on the red carpet. I was not so lucky and I know many other women out there who were in the same boat. A mastectomy is not all roses and rainbows, it hurts physically and emotionally and, for many women, things don’t go as smoothly as Jolie’s writing suggests. Most women do not recover in a couple of days and they are often very uncomfortable with the way their body appears post-surgery. But while I’m angry, I am trying very hard to also be accepting and kind, as I always do when I hear about previvors who have “perfect” results and go through life never having to know the turmoil of a cancer diagnosis. I guess what I’m saying is we should all love our fellow man, especially around the tender issue of cancer. We are all different and when someone else has different feelings or experiences, it is not good to respond by badmouthing them in public. (Of course, feel free to gripe all you want in private. I, for one, am going to go scream into a pillow.)

Basser Research Center will focus on BRCA

This is fantastic news. Dr. Domchek was my oncologist in Philadelphia, and she is a wonderful and renowned researcher in the BRCA field. I couldn’t be happier that my hometown is getting this research center. I hope to be able to participate in whatever research they have going on in the future (as a survivor, of course – I’m kind of done with the cancer patient thing and don’t plan to do it again).

Bad press for Komen

Those of you who are (unfortunately) hooked into the breast cancer “scene” have probably already heard about the controversy over the Susan G. Komen Foundation pulling grants to Planned Parenthood allegedly because of pressure from anti-abortion groups.

I don’t want to get political, but this does anger me because, while people may not agree with all activities of Planned Parenthood, they do provide breast cancer screening services to a large number of disadvantaged women who may not have these services otherwise. So this decision by Komen, no matter the reason or your politics, is jeopardizing the breast health of a huge number of women which is neither good nor right.

My friend brought my attention to this article and I want to share it with you all: Five Ways to Support Women’s Health for All. Even if you do not agree with the article, I do want to highlight a list in a previous entry of some excellent organizations that are just as worthy of donations as Komen and are important to me for one reason or another.

Article: Triple-Negative Research

Reading: Groundbreaking Research on Triple-Negative Breast Cancer Gets Boost from Komen

While this article has a positive message (hooray, research specifically geared toward triple-negative breast cancer!), it always scares me when the media talks about this subset of breast cancers because of things like this: “Research suggests that triple-negative breast cancers have a higher proportion of cancer stem cells.” It’s so cold-sounding, matter-of-fact. Like if my doctor were to just come out and say, “Cara, you have triple-negative cancer, and that’s bad because those cancers carry a higher incidence of brain mets, grow more aggressively, and tend not to respond to anything other than chemotherapy. So if chemotherapy stops working, you’re SOL.”

Sigh. It angers me that, though I feel so great about everything right now, one silly article can knock me down a few pegs and again bring about these fears of recurrence and death.

Hoda Kotb on her Breast Cancer

This weekend, the boy and I went to the National Book Festival, a delightful celebration of literature that brings authors of all genres to the National Mall to talk about their work. The biggest draw for me was Toni Morrison, but I stuck around to listen to Hoda Kotb after seeing that she recently wrote a book about her career and her battle with breast cancer.

Many celebrities have had breast cancer: Melissa Etheredge, Edie Falco, Christina Applegate, etc. Not many talk freely about the experience, which I guess I understand because they’re in the public eye and not everyone wants to hear all the gory details about surgery and chemo and that good stuff. But still, I wish a celebrity would take us through the details, to prove that person is real and has a real breast cancer experience. Hoda didn’t do that – her story was very much about “fighting” and making it through and being a survivor – you know, the sugar-coated version of breast cancer. Still, I think it’s important that she shared the story at all, so here’s what I videotaped on my iPhone for you all. (Hopefully, this isn’t illegal, but I guess if I post a mug shot in a couple of weeks, we’ll know!)

I want to add two things that Hoda said that I found very profound. For one, she shared a story about a man on a plane who, after she was reluctant to tell him she had breast cancer, told her, “Don’t hog your journey. It’s not just for you.” That’s why I keep this blog!

She also said that, though after surviving breast cancer many women feel they need to do something huge with their lives, it’s important to realize that making small changes every day also makes a big difference. I liked that. Maybe I don’t have to run a marathon or start a non-profit or change someone’s life, but I can make small changes every day that will make my life better after breast cancer.

Thanks for the words of wisdom, Hoda.

Me in the New York Times!

Now that I’m done chemo, I don’t feel as inclined to blog. Maybe it’s because I have less to complain about. It could also be that I’m getting back to life and I’m busy with friends and work (which is REALLY busy right now). Either way, I am happy to report that I feel fantastic and am looking forward to my upcoming surgeries in October and December, which will hopefully result in my having a beautiful rack.

Today I have two things to share. One, I’m in the New York Times feature “Picture Your Life After Cancer“! Sure… I submitted myself… but it’s still exciting. Second, the article Breast cancer: patients with mutation diagnosed earlier than previous generation. When I first saw the title of the article, I thought it would be about women getting diagnosed earlier because they start screening earlier in mutation carriers. But the article comes to a different conclusion: that women with the mutation get cancer earlier than the older generations in their family. I think my explanation is better (though who would take my word over the people at MD Anderson). It just makes sense that if women start screening earlier, they’re going to find breast cancer earlier. My mom could have been screened at my age, and perhaps they would have caught her cancer before it was so far gone that there was nothing they could do about it.

A very Cancer-y week

On Monday, I had a follow up appointment with my oncologist – the last chemo follow up. In all honesty, I feel pretty awesome already. My hands are a little bit itchy and my thumbs and feet are still tingly from the neuropathy, plus I’m still bald, but I feel great. Thrilled to be finished with chemo. Thankful that on this Wednesday night I’m not dreading another infusion that would have taken place tomorrow. No needle in my port, no taste of metallic saline in my mouth, no weekend of feeling tired and worn down and off. Just normalcy… well… as much normalcy as one can feel after being diagnosed with breast cancer and undergoing a summer o’ chemotherapy.

Did I mention that I was followed around by a camera crew at my follow up? No? Well, I was. Yep, the marketing people at GWU asked me if they could film a little profile about me for marketing purposes, to post on the website and play on TVs throughout the Medical Faculty Associates building. I’m okay with being the poster-child for young adult cancer, in fact, I’m flattered they asked me. As with the pictures Rina took of me, a video of this experience will be interesting to look back on. Plus, the videographer said if I’m interesting enough (if?) he may want to turn it into a full-blown documentary!

Which brings me to my next point: tonight I attended a screening of the movie 50/50 that was followed by a Q&A with actor Seth Rogan and writer Will Reiser. In the movie, Seth Rogan plays Kyle, friend of Adam (Joseph Gordon-Levitt) who is a 28 year-old diagnosed with a rare spinal tumor. The movie follows Adam from diagnosis through chemo to surgery, all the while exploring his relationships with Kyle, his girlfriend, his doctors, his parents, and his therapist. I thought the movie was wonderful – seamlessly weaving comedy with drama and showing a, for the most part, authentic young adult cancer experience.

Many scenes really hit home. When Adam hears the doctor say “your cancer” for the first time, everything seems to dissipate around him and the rest of the doctor’s words become jumbled. Many of his friends don’t know how to respond, and say the “wrong” things to him, as in “My uncle had cancer too… he died.”

(L to R) Doug Ullman, Livestrong CEO, Seth Rogan, and Will Reiser

The one thing I didn’t like about the movie was the moment when Adam’s doctor comes out after his surgery and tells the family “He is going to be okay.” One issue for a lot of young cancer survivors is the fear they carry for the rest of their lives of recurrence and new cancers. To wrap up the movie with such a simple statement makes everything seem black and white – like cure is extremely easy to achieve. Cure might be possible, in some sense, but young adult cancer survivors will never truly be “okay”. Cancer forever changes you. I realize they had to end the movie somehow and it didn’t bother me enough to negate the rest of the movie’s positive points, but I did need to comment on it.

Go see 50/50. It’s worth it. You’ll laugh and cry, even if you have no experience with cancer.

Tomorrow night I’m going to participate in a young adult cancer patient group at GWU, so it’s a cancer-filled week! I’m looking forward to a time in my life when I won’t have to say that.