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.

IMG_1583

 

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The Desire to NOT Die

When I was first diagnosed with breast cancer in March 2011, I thought a lot about dying. Now that I’m 2 years out, dying is moving further and further off my radar. The other night, though, I had a really intense dream about it.

I lived in some kind of futuristic society with a controlling government (think The Hunger Games), and I was going with a group of people to a big gathering. The group I was with (myself included) had previously decided that, because we didn’t like the government, we were going to wear bombs to the event and blow ourselves up in protest (think Al Qaeda).

Yes, it’s morbid. Don’t ask me how my subconscious comes up with these things because I have no idea. Anyway, on the way to this event, I realized what it actually meant to blow ourselves up and I started uncontrollably crying and begging the rest of the group to let me back out. I remember being so upset about the thought of dying that my insides felt like they were made of stone and I would be able to make myself so unwieldy that no one could push me forward and make me do the dark deed.

Gate to the wild (salvaje), Vilcabamba, Ecuador.
Gate to the wild (salvaje), Vilcabamba, Ecuador.

Then I woke up.

In conjunction with this dream, I’ve also been watching The Big C, the Showtime series about a woman who is diagnosed with terminal skin cancer. Besides the first season, during which I found the main character, Cathy, to be insufferable because she wouldn’t tell anyone about her diagnosis, I have really enjoyed the show and felt many of its moments to be relatable to my experience. Cathy searches for meaning in her life, tries to focus on what’s really going to make her happy, and, finally, tries to come to terms with her inevitable demise. I laugh, I cry, I sob, I cry some more. I marvel at the fact that this character is hurtling toward her death and doing it so gracefully. That’s Hollywood for you.

I’m not sure what the point of all this death talk is, except to say that, even though I don’t think much about death these days, I still really, really don’t want to die. I just don’t know how anyone can find peace with dying, though I know many people do, and one day I’ll have to, also. Hopefully, that will be in 80 or so years, after I’ve run a marathon, played Eponine in a production of Les Mis, and visited every continent.

 

 

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.)

Weekly Happy: Bursts of Sunlight

Potomac

There are many positives to living in Washington, DC, and the excellent metro system is one. Today I was taking the Yellow Line from where I live in Columbia Heights to King Street in Alexandria, Virginia. I rarely ride the Yellow line out of the District, so I was pleasantly reminded about the above-ground bridge over the Potomac River. For a brief minute, you are out of the dark underground tunnel and able to see the beautiful sights of the DC waterfront. Today, this bridge crossing was particularly smile-inducing, because of the sun, blue sky, and crowds of people out and about enjoying the last of the cherry blossoms and the trails hugging the river. Of course, just as you’ve become hypnotized by the Washington and Jefferson monuments and warmed by the sun, you drift back underground, but it makes that brief moment all-the-more magical.

Someone was asking in the Young Survival Coalition Facebook group if anyone had advice to get her through treatment, and one thing I might offer would be to enjoy the small moments when you feel happy. They might be few and far between, but they do happen and it is worth your time to bask in them before they disappear. One such moment, for me, was the week after my first chemotherapy infusion. I had just left my follow-up doctor appointment and was walking through a warm, May day in DC, amazed at how good I felt despite all that was going on. In that moment, I felt strong enough to get through the whole ordeal, and I still remember that happy feeling to this day.

Oh, I guess I should also mention that, since my last post, I hit my two-years-cancer-free mark. It was April 5, 2011, when the tumor was cut out of my right breast. Yay!?!

Come Blog About Death

http://www.npr.org/blogs/health/2013/03/26/175383540/why-more-patients-should-blog-about-illness-and-death?ft=1&f=1001

I kind of want to say “Duh” to this article, but I know that there are a lot of people out there who have terminal illnesses who probably don’t think at all about writing. And that makes sense… because having a terminal illness gives you way more important stuff to think about.

But, for me, writing is and always has been therapeutic, so it’s awesome to see it validated by NPR, even if it’s just anecdotal for now (get on it, researchers).

Speaking of writing, my weekly happy for this week was going through old school papers in my bedroom at my parents’ house. They recently painted so all of my things were in boxes and I had to decide what to keep and what to throw away. I wrote many stories in high school and college, but I haven’t written regularly in a while. Reading old stories made me surprised at how eloquent I was and inspired to write more.

Last week, I sat in a cafe and churned out a couple paragraphs of creative writing. It felt awesome and I realized how much I missed it. Unfortunately, I also realized how bad I was at plot. I can do expository ’til the cows come home but putting together a coherent story with a beginning, middle, and end is really hard for me. Something to work on in my spare time, which I have a lot of now that I’m unemployed.

I leave you with the first paragraph of the story I wrote last week, inspired by a guy I saw out the window of a bus:

Karl bashed a cigarette butt against the stone sidewalk of 16th Street with the heel of his worn sneaker. Crowds of tourists wandered past, lost on their quest for the White House. Though Karl knew the damned thing was just two blocks away, he didn’t dare speak to these cheerful families lest they try to start up a conversation about the beauty of the capital in springtime.

Estoy Aquí

Contemplating Cuenca
Contemplating Cuenca

I am home from Ecuador a bit early. I had planned to be traveling for seven weeks, but alas I only traveled for four. It was a great run – so many empowering moments for me and a lot of self-reflection, which was the whole point. But I got tired of the backpacking style – living out of one bag that I had to pack and repack each time I was leaving a place, hauling my pack on long and dreary bus rides, staying in some dimly lit lodgings, etc. Mostly, though, I was lonely. I met some great people, of course, but the nature of my trip was such that I was in each place for a couple days and then I moved on, and people were rarely moving on in the same direction I was, so each couple of days I had to say goodbye and head off to meet new people who I would say goodbye to in a couple of days.

Late one night, as I was stewing in my own anxiety about an upcoming 8-hour bus ride across the border from Ecuador into Peru, I realized I just wanted to go home. What fun is traveling if you have no one to share it with, or if you’re going to work yourself up into a debilitating anxiety each time you have to do something difficult? It really didn’t seem worth it anymore.

I was surprised at how at-peace I was with my decision, though. Much of my self-realization on the trip was focused on how much I beat myself up over things that I don’t do or don’t do “right”. I expected to feel really disappointed in myself for what others might view as “giving up”. I met so many others who were backpacking alone for months at a time. What was wrong with me that I couldn’t do the same? Was I not flexible enough, or adventurous enough, or outgoing enough? Why didn’t I eat guinea pig or jump off a bridge or completely change up my plans or all manner of other things that backpackers did?

My “aha” moment was this: who cares that I didn’t do those things? I am myself, not other person, and I need to be okay with that. It’s so much easier to beat ourselves down about the things we aren’t doing than it is to build ourselves up about what we are doing, especially when we constantly see things on Facebook or Pinterest or YouTube that would suggest that other people are living lives much more epic than our own.

But for most people, life is about 5% epic and 95% normal (at least by other people’s standards) and so making sure that you’re happy with your non-epic moments seems a lot more important than striving to make everything epic, right?

This is not to say that I don’t want to have dreams. I still want to travel to India and sing on a Broadway stage, and I think having cancer made me feel like there was no time to accomplish my dreams so I had to do everything RIGHT NOW, and that caused me a lot of anxiety because, realistically, you can’t accomplish all of your dreams at once and sometimes you can’t even accomplish them at all. So I would like, instead, to focus on being satisfied with what each day brings because life’s too short to be anxious and disappointed.

And this is why I’m starting a new project on my blog, which is to check in each week with something that I did that made me happy. I’ll call it my “weekly happy”, and along with my own posts I’d love to hear from my dear readers with their weekly happy, too.

Have shoes, pack, hair… will travel.

I haven’t updated in quite a while, but it’s for good reason. I’ve been planning a big life change and I’m finally ready to announce it here! Yes – I have quit my job (last day in the office will be this coming Friday the 25th), and will be embarking on a two-month adventure through Ecuador and Peru.

I am endlessly excited and endlessly terrified all at the same time. So many people ask me why I’m doing this, and it’s sometimes hard to articulate. So often throughout the past year, I’ve thought to myself, “there’s got to be more to life than the routine of working 9 to 5, cooking dinner, watching Thursday night sitcoms, and going to bed, just to do it all over again.”

While my life was by no means bad, I still just felt like there was more out there. Like I could get closer to finding my passions, I just needed an out-of-the-box experience. I needed to get out and see things, spend some contemplative time with myself, and be challenged, empowered, and humbled by the universe. I could blame it on cancer, but I can’t say that this wouldn’t have happened anyway. Cancer just made it seem more urgent.

So… solo travel to South America emerged as a viable plan. I was a Spanish minor in college and I love the region’s literature and culture, plus it’s a haven for backpackers, and Ecuador is one of the cheapest countries in that part of the world.

I’m off on February 4th. First I’ll enroll in a Spanish school in Quito to get back my language skills, and then I’m off to adventure. First to the beach with my boyfriend for a week, then back to Quito to see him off and make my way down through the varied Ecuadorian landscape and into Peru, where my main goal is to get to Macchu Picchu, however that might happen. I’m not planning to blog regularly, because I would rather be living in the moment, but hopefully I’ll be able to post some pictures and updates here, just so I have some documented memories!

Hiking shoes
These shoes are made for walking
photo 3
Hey, hair past my ears!
photo 2
My pack. Think I can fit my mattress in there?

 

YSC Holiday Party

Last night I went to Teaism for Young Survival Coalition DC’s holiday party. There was a large group of women there, which was wonderful and sad at the same time. I sat across from a young woman who was diagnosed just 2 months ago and is now in the midst of chemo. She did not seem to be doing well emotionally – she was often unable to put her feelings into words and kept asking if she’d ever be back to her normal self.

I’m in such a different place right now than she is, but I definitely understood where she was coming from. That feeling of being thrown, violently and against your will, into a vortex of doctors, decisions, information, emotions, fears, anxieties, baldness, etc. – it can all feel unbearable and insurmountable at times.

I was at a loss for what to say with her to make her feel better, but another woman at the table said something I thought was really profound: “You will get through this. And, after you do, you’ll be sitting at this table comforting someone else.”

For me, I’m at the “sitting at the table comforting someone else” stage of my experience. But it’s humbling (and infuriating and sad) to know that at any moment, I could be thrown back into that vortex. And I think that’s why I enjoy staying in touch with groups like YSC, because I still need their support.

The Emperor

I’ll admit I don’t understand this article. Also, I didn’t read all of it. Coincidentally, I also stopped in the middle of reading the author’s (Siddhartha Mukherjee) book, The Emperor of all Maladies

I stopped for two reasons: 1) I was bored and 2) it scared the crap out of me, because most of the examples in his story were people who were treated and then had recurrences that killed them. Originally, I thought it would be interesting to read a history of cancer. The first couple chapters were really interesting (did you know that one of the first recorded cases of breast cancer came from an ancient Egyptian papyrus, or that mustard gas played a large role in the development of chemotherapy as we know it?), but then it got really scientific and I was less able to follow. It also really brought me down to read story after story of failed courses of treatment. Not what I needed after finishing my own, seemingly “successful” treatment.

Needless to say, I am now reading mindless fiction (Neil Gaiman’s American Gods). I just thought it was important to mention Mukherjee’s article and book, because for doctors, scientists, or others who really want to read about why cancer treatment is where it is today, it’s probably a worthwhile read.