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.

Cliches and The New Normal

In the past couple of weeks, there have been several times when I’ve paused and thought “What the hell am I doing with my life?” Mostly, these happen at work. It’s not that I don’t like my job, I do – it’s just that the the weight and profundity of what I experienced this year suddenly become so real to me that I wonder why, after it all, I am still sitting at the same desk I sat in last year, staring at the same computer, hacking away at the same 9 to 5. Hanging out with the same friends. Having the same “normal” banter with my boyfriend. Watching the same TV shows. Eating the same food.

Welcome to “survivorship”, I guess. What is it that makes people want to do something profound after experiencing something profound? To me, I just feel kind of lazy and disappointed in myself. I was confronted with what could have been (and still could be) a fatal disease, and yet, when treatment, major surgeries and major life decisions were over, I went back to the same crap I did before I was confronted with my own mortality. There is so much I would like to change about my life and so many adventures I would like to have before I die – why not start now? Because, of course, these things don’t happen in a day and there are realistic limits in life – money, jobs, family, social obligations.

What I really wanted to do was post this article about cancer “rehab”, because it made me think about all the above issues I’m dealing with. I’d love to hear from other cancer survivors who went through this.