Decision-making post cancer

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This is Philadelphia, our new home. Yes, the boyfriend and I have left DC for a “new” city (in quotes because we used to live in Philly, so it’s not really new, but it’s new enough after four years away).

I am here to pursue grad school: a Master’s in Arts Administration, so I can one day change lives through the arts… or something like that. This has been a huge decision for me and mostly every day I question whether it was the right decision. I guess everyone does that with big decisions: buying a car, buying a house, moving to a new city, taking a new job, etc.

But I’ve definitely noticed that making decisions has become much harder for me post-cancer.

This might be an over share but I want to relay something my therapist and I talked about, which is my fear of loss, because I think it relates a lot to this topic. I have lost a lot in my life: my mother, my breasts, my “carefree” 20’s, my feeling of control over my body… the list goes on.

And with each loss, I become more averse to the feeling. Thus, when it comes time to make a decision, I think about everything I might lose in the decision-making process. If I choose one path, I am “losing” the possibility of all other paths. For instance, I have chosen to go to Drexel for a Master’s in Arts Administration, but that means that I can’t go to UPenn, a better school, for a certificate in Nonprofit Management! The horror!

It even trickles down to little decisions. I spent the summer working at Ford’s Theatre, where Lincoln was shot in 1865. A couple times, I was wandering through the museum making sure all the visitors were accounted for and I’d find abandoned tickets on the floor. I would pick them up to throw them away, but I’d weigh the decision very heavily. What WON’T happen if I throw this away? What if the visitor realizes they dropped it and comes back? What then?

During those moments, I would try to calm myself by saying, simply, “It ISN’T THAT BIG OF A DEAL. Throwing this ticket away will not be the end of the world.”

I realize I have to see things as more gray, not so black and white between having and losing. Making decisions is what advances life and I can’t let it cripple me.

Any other survivors experience this?

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Are Cancer Survivors Selfish?

The other day a friend posted an angry rant on Facebook about racist names of sports teams, such as the Washington Redskins and Chicago Blackhawks. In my endless quest to find happiness post-cancer, my reaction was, naturally: “Calm the f&*k down. Life is way too short to get worked up about those things.” But then I thought about how it was truly unfair that we treat native Americans so poorly, and, for a moment, I felt bad about my reaction. 

Which brings me to my next point: Are cancer survivors selfish? I often find myself having a similar reaction as the one above to people who gripe about the world’s injustices. I also see lots of stories on survivor message boards about people who were in good relationships pre-cancer, but then after cancer their significant others break things off because they feel the cancer survivor is only thinking of him or herself.

My uneducated explanation is that a brush with fatality makes us turn inward and realize that life is short and all we really want to do with our time here on earth is be happy. That might sometimes mean that other people’s drama or other people’s causes get pushed to the side in favor of our own passions and pursuits. 

Of course, maybe it’s just me. I’d love to hear what others think – cancer survivors and non-cancer survivors! 

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.

La Mariposa

Today I visited Mindo, a town about 2 hours outside of Quito that is known for its cloud forest, orchids, butterflies, and adventure activities like zip lining and tubing.

I went with a woman I met in my hostel. She is from Russia and doesn’t speak English, plus her Spanish isn’t great yet so it was a bit frustrating. But during a particularly frustrating moment (she had lost some tickets that we bought earlier in the day for an activity I wanted to do), a butterfly landed on my bag and I had to smile.

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After that, the day improved greatly with some spontaneous zip lining high above a lush forest and rushing river. I was scared but I sucked it up, reminding myself that I lived through cancer so what’s a dangerous activity in a third world country going to do, really?

The meaning of a broken bracelet

I’m in Ecuador. It’s hard to believe, but I’m here among the mountains and valleys, the jungles and beaches. It’s been wonderful so far – I’m already afraid that a month won’t be enough time to see and do everything that I want to see and do.

Today, the baci bracelet that I got during my First Descents trip back in September snapped off as I was scrambling to find my hostel keys. I cannot think of a more exquisite symbolic moment for my first day in South America!

First Descents was my first step toward breaking my routine and making life changes. It was a small step, but one that got me to believe that there was more to life than cancer and playing it safe. I learned that fears could be overcome and that I can take back control. The baci bracelet embodied that spirit of adventure and vibrancy.

Ever since First Descents I’ve ached for more adventure and chances to challenge myself and feel empowered. Whenever I looked at my wrist, I was reminded that I could do more.

And now, I am doing more. This trip is my next step, a much bigger one. If that bracelet could speak, it would have told me that I was on my way and that I no longer needed it as a reminder to take life by the horns. Also, it probably would have called me grasshopper. Thanks, baci bracelet.

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