Another Year: Reflecting on 2013 and moving forward to 2014

Just like that another year has passed. My cancer experience was confined to 2011, and since then I kind of defined my time based on that – 2013 was 2 AC (after cancer). 2012 was a rebuilding year; I literally rebuilt my body and figuratively rebuilt a “normal” life after cancer. When 2013 started, I saw it as a year of bursting forward in spectacular new ways. I quit a job that I was starting to resent, I traveled on my own to a foreign country for a month, I applied and got into graduate school and I moved from DC back to Philadelphia, where I grew up, to attend said grad school. This past year, in a lot of ways, brought me closer to the path to happiness and fulfillment that I so desperately seek and that feels so much more urgent now that I’ve had cancer. 

Sometime in 2013 however, probably in the summer, I stopped thinking of time in terms of cancer. My hair was long enough to put into a ponytail, and I was making new friends who, absent of any context clues, had no idea that just a year and a half ago I sat in a cushy chair while adriamycin and other such pernicious drugs coursed through my veins. Now I struggle with whether or not to tell my grad school friends, and my bf and I say things to each other like, “Hey, remember when I had cancer? That was crazy.” 

In 2013 I was easily moved to tears many times. Fortunately, I think it is not because I watched many romantic comedies but instead because I let beautiful moments into myself so deeply. I was moved to tears by great pieces of music, well-written books, and natural wonders like a night sky full of stars or sunset over the Teton mountains. Considering I made a resolution in 2012 to stop and fully experience small moments, 2013 was a smashing success. 

But there is still a lot that I have to work on, so here are my “resolutions”, of sorts: 

• One: I have to settle on a whether or not and how to tell new friends that I had cancer. It was a whole year of my life and left me with stories to tell, but it is often strange to start a sentence with “I had cancer and…” while at a bar surrounded by beer bottles or at a friend’s house enjoying a home-cooked meal. 
• Two: I have to continue learning not to beat myself up over feelings like jealousy. As was written in the book I just read, A Map of the World, “…feelings are never wrong. Emotions in varying degrees exist, of course, and have to be acknowledged, but they in and of themselves… do not have moral weight and should never be judged.”
• Three: I have to stop being timid when it comes to going for the things I want in life. I always seem to apply to jobs that are below my skill level because they are easier targets. I take unpaid internships because it’s easier than trying to find paying part-time work. For many years, I’ve said that I can’t make a living from singing because auditions are too hard. All of that needs to stop. I know it can’t all happen at once, but I want to acknowledge that I have this problem and work on it.

And that’s about it. Not sure how any of this relates to cancer, except that cancer lit a fire under my ass to get my life in order and realize what’s really important. 

Anyone else have resolutions they want to share? 

Decision-making post cancer

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?

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! 

Speaking at Survivor Luncheon

This month, I had the privilege of participating in the George Washington Breast Care Center Survivor Luncheon. It was a beautiful event celebrating the patients from the Breast Care Center – with great company, great remarks, and last, but not least, great food.  I was honored to be asked by my surgeon, Dr. Christine Teal, to sing, but I also said a few words about my experience.

Andrea Roane, anchor of a local TV news station and champion of breast cancer awareness in DC, and I.

Here are my remarks, here’s a video of me singing! Sorry for the tilted-ness and sound quality. My dad took it from his cell phone.

“Hello. I am so honored to be participating in the program today. I was diagnosed with breast cancer in March of 2011 and, though I’ve been out of treatment and surgeries for almost a year, I am still trying to find out what being a survivor means. I still feel fear and sadness on a regular basis, as I’m sure many of you can relate to, and that makes calling myself a survivor difficult.

During last year’s luncheon, they played a video profiling my story and featuring the wonderful people at the Breast Care Center. I was so grateful to be able to share my story, and I hope that people found it powerful. The video described that my cancer was genetic, from the BRCA 1 gene mutation passed down to me by my mother, who unfortunately passed away from the disease when I was just 3 years old.

For me, the most moving part of watching my video at last year’s luncheon was seeing my mother on the screen. She could have never known that her story would be broadcast to so many people she didn’t know, but people she had something in common with. And that really made me feel like the video was not just about me, but also about her. It was a way to tell a story that she never got the chance to tell.

I relate that experience to a similar experience I had in September. I was lucky enough to go on a trip with First Descents, an organization that takes brings young cancer patients and survivors on week-long adventure trips. I was rock climbing in the beautiful Colorado Rockies, and on our last night, we had a ceremony where we all floated a candle on a small pond to honor those who weren’t able to be with us. I, of course, thought about my mother, and I found myself thinking that I was on the trip both for myself and for her—because she never had the chance to be a young survivor and go rock climbing in Colorado.

I see a theme emerging in both of these examples. There are so many people who were not given the chance to survive, and that makes it so much more important that us survivors live each day like it is precious. We’re here to celebrate surviving, and I don’t think we can do that without remembering those that we’ve lost, and being grateful each day that we have the opportunity to continue experiencing all the beauty, joy, and even hardship that life brings us.

As much as I like philosophizing, I’m actually here to sing. I’ve been singing my whole life. As a child, I’m sure much to my parents’ chagrin, I belted out Disney tunes at any given opportunity. Much to my boyfriend’s chagrin, things haven’t changed much. During treatment, singing and listening to music provided a great tool for channeling my sadness and cheering me up.

I’ll be singing, “You Walk with Me,” from the musical The Full Monty. One of the characters in the show sings it at his mother’s funeral, so of course I think it is a fitting tribute to my own mother and to anyone who couldn’t be with us today, but who we still keep close to us to remind us that we have been given a gift that not everyone receives.”

Quote

Wanted to share this quote that I’m finding particularly inspirational today:

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
– Eleanor Roosevelt

It so perfectly sums up a lot of what I’m feeling in this moment – the need to go out and challenge myself in ways that I didn’t consider before. After living through a horror, confronting fear, not on my own terms, I am inspired to confront fear on my own terms. Making changes, traveling to strange places, discovering myself – all are scary but all are my choice and controlled by me. There are so many positive changes I want to make that I think I cannot make – because of finances, fear, security, etc. But I can’t let fear hold me back. I was forced to face fear before and I defeated it; now it’s time to take back my life.

 

 

Light the Night, DC 2012

This weekend I participated in the DC Light the Night Walk, for the Leukemia & Lymphoma Society. I did it with a friend from my First Descents trip who is a Lymphoma survivor. Here’s a picture – I’m the one toward the middle of the photo looking up at the blurry white balloon, with a glow-stick necklace and green scarf.

I enjoyed being at an event supporting awareness and research for a cancer other than breast cancer, especially during breast cancer awareness month. I don’t want to start a rant about “Pinkwashing“, because so many others have already done it for me and I’m trying this new zen thing where I don’t dwell on things that stress me out, but suffice it to say that I’ve seen some really stupid BCA partnerships (Kentucky Fried Chicken?) and events (e.g. Boozin’ for Boobs, which raises awareness through, you guessed it, getting good and drunk on a substance that’s been proven to raise your risk of breast cancer).

Back on topic, at the walk there was a young woman, probably around my age, who was clearly in the middle of treatment. She was wearing a hat to cover her bald head and she was wide-eyed and kind of terrified-looking. I obviously don’t know what’s going through her head but it brought me back to my own journey and how it felt to be in the middle of treatment – like everyone was looking at you and thinking “poor girl”. It’s crazy how far I’ve come from being that person. At the walk, we were just having fun. We ate cotton candy, made buttons, played kid games, and talked to a guy on stilts. Had this been a year ago, I probably would have felt more camaraderie with the people there, but instead I felt detached. Like I wasn’t one of them. It feels good and sad at the same time. Obviously no one wants to go back to having cancer after they’ve moved on from it, but, for me, I felt safest and most cared for during treatment, and that was a good feeling.

Preparing to Rock Climb

Last night I attended a happy hour for First Descents, this awesome non-profit that sends young cancer survivors on adventure trips. I, myself, am heading out a First Descents rock-climbing camp in Estes Park, Colorado, in a couple weeks, and hearing other people’s enthusiasm for the program really pumped me up.

Last weekend, the boyfriend and I headed to an indoor climbing gym so I could familiarize myself with some of the climbing lingo (“Belay on!”). We learned to tie lots of different knots and use a carabiner, which, up until 5 seconds ago, I thought was spelled caribbeaner. I guess now I can stop dreaming of sunny islands with white sand beaches every time I say the word. Or maybe not, because dreaming of beaches is fun.

Also fun? Climbing walls. Fun and terrifying, because I am not Spiderman and losing my grip on the wall and plummeting to my death is a very real fear. Nonetheless, I am hella excited for my trip and not quite sure what to expect. I know there will be about 15 people living together for 5 days in a lodge with a cook, some volunteers, and our “counselors”. I know that we’ll be climbing rocks. Other than that, I don’t know how it’s going to feel or whether I’m going to accomplish the goals they set forth for me, but I know I’m going to try.

The past few weeks have been difficult. Work is extremely stressful and my routine is cumbersome: wake up, walk the same route, stare at the same computer in the same office, and deal with the same frustrations. There’s gotta be more to life (thanks Stacie Orrico), right? I’m hoping that the First Descents trip is a metaphorical catalyst to help me move forward.

Happy Mastectoversary!

A year ago today…

I was in the hospital recovering from my double mastectomy, which was April 5, 2011. I almost would have let April 5, 2012 go by without a thought but my boyfriend reminded me it was a year since my surgery.

As I sit here now, typing this, I don’t have any sense that April 5th is a monumental day in my life. It probably was when it was happening, but not now. I read about all these young women who have prophylactic mastectomies and achieve peace of mind that they’ll “never” get breast cancer. I’m glad for them, but even after my double mastectomy, I still fear getting breast cancer. Again.

Is this normal? I tell myself it’s just being realistic. People get recurrences, even after major surgeries to remove breast tissue. I hear about it more than I’d like to. In the shower, I still run my fingers over my skin to make sure there are no lumps. Every time I feel a weird soreness or sharp pain or other strange sensation, I have a fleeting fear the cancer has returned.

Peace of mind would be great. But a year after my surgery I’m still not there.

And now this has turned into a really negative post that doesn’t accurately reflect my mood today (It’s Friday! I am going home for Passover! It’s spring! Team Peeta!) so I want to also say that this fear of cancer doesn’t consume my every day and paralyze me (except when I’m crazy like with the dizziness episode) – it just exists. I think it’s something I’ll live with the rest of my life. Maybe that’s just the difference between previvors who have mastectomies and survivors who have mastectomies.

Last Year’s Anger

I haven’t posted in a while, which is probably a good sign that I haven’t thought lately about cancer.

To prompt this entry, I decided to look back at what I was writing this time last year. I had my MRI done mid-February and then an ultrasound a couple weeks later, and I wrote this post after the ultrasound but before my biopsies, on March 8, 2011.

“I just feel so angry that I’m 25 and I have to go through this… I’m angry that I got tested so young and I’m angry that I’m not being stronger.”

I’m struck by my expressions of anger, but what strikes me most is this feeling of being disconnected from the person who wrote that entry. It’s only been a year, and yet I keep saying in my head, “I am not that girl anymore.” When everything was happening, I was hyper-present for it all. The feelings felt deeper, the emotions were stronger, my head was right there, and now… it’s all a blurry vision. Sitting in the chemo suite hooked up to the wires. Prepping for surgery. Hanging out by my parents’ pool, bald. All just silent videos in my head.

Is it weird that I’m kind of saddened by this dulling of memory? By no means do I want to return to last year. But I don’t want to lose the memory or the feelings – the energy of fighting for my life and and focusing on me and knowing I had only one job to do – it kind of made things easier. Now, I’ve got my job, maintaining relationships, cooking, cleaning, deciding what to do on the weekend, making plans, paying bills. Cancer is hard work, but I’m starting to think that life is even harder.

As a side note, I want to share that I did sign up for a 5k race at the end of April and I’m proud to be training for it right now. Working out feels good – I pump myself up by saying, “Body, you betrayed me last year, and now I will run you into submission.” I also signed up for the First Descents program and I’ll be traveling to Colorado in September to rock climb with other young cancer survivors.