Finding My Identity After Cancer

“I honestly don’t remember what it was like.”

My friend and I were sitting across from one another at the cafe table, coffees in hand, the warm summer breeze rustling the trees that lined the city street. She looked off into the distance, tapping her finger thoughtfully against the side of the cup. “There’s a picture somewhere of me without my hair, a cute little 90’s denim hat on my head, but I don’t remember much about the actual pain or what I went through.

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At the hospital- leaving 10 days after surgery in October 2015

“I was just sick, as a kid, and then I got better and moved on with my life.”

One of the many things I’ve learned about being in the “young adult” demographic of cancer fighting is that it’s really hard for people to understand what we go through. Childhood cancers affect the families, but the child hardly remembers the ordeal as an adult. And if someone develops cancer at an older age (after having a family, becoming grandparents, retiring, etc) it’s simply viewed as another season of life, or unfortunately, somewhat expected that people more advanced in age will become chronically ill.

But when I was diagnosed last year with stage IV oral squamous cell carcinoma and had half of my tongue removed and reconstructed with muscle from my left forearm, I was left with a sense of bewilderment, shock, disbelief. I felt as if the rug had been yanked out from beneath my 27 year old sense of identity.

Your 20’s are supposed to be a time of figuring out what you want to do with your life. You’re in your friends’ wedding parties, moving, dating, traveling, getting married and having kids, paying off your loans, and grasping for a sense of significance and meaning to the things you’re passionate about. You’re a full-on adult now, but still feeling like college life was yesterday.

And you have dreams for the future.  

My “dream life” once consisted of marriage, success, and a whole lot of DOING. I was going to play my cards right and make all the right decisions to land me exactly where I wanted to be as I approached my 30s.

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Playing my first show after surgery and cancer- April 2016

Being on track meant I went to college and graduated with my Bachelor’s degree early with honors, always the straight A- student. Then, I was trying to figure out where I was going with my degree that I had just paid for with enough loans to purchase a small country. Paying the bills was my main focus. Throughout my early 20s, I recorded a few albums, played a few shows, did some domestic traveling and touring, and entered the dating world. I jumped from one job to the next, trying to find purpose and fulfillment but falling short every time, experiencing many ups and downs of life but still driven by “the plan”. I moved out of my family’s home to the city for more opportunity, had a “network” of friends and acquaintances, joined a church and quickly got involved in music ministry and leadership, which turned into a full-time job. I was certain this was the path for me!

But cancer was never a part of the plan. A cancer diagnosis changes everything.

On September 9th, 2015, I received the devastating news that I had a fast-growing tumor in the right side of my tongue, and that I needed surgery to remove it. This involved total reconstruction of half of the tongue and a neck dissection to remove lymph nodes in a six hour surgery that resulted in over six months of physical recovery. My entire world was flipped upside down; dealing with treating my cancer through holistic and alternative methods, respectfully opposing my doctors’ push for radiation, fundraising, and recuperating ultimately became my full-time job.

This didn’t fit into my plan at all. And it changed me into a “cancer patient” with her future plans coming to a screeching, painful stop.

It’s now over a year since my surgery. My latest PET scan came back completely clear, granting me access to the much-coveted and prayed for remission stage. With words like “remission” part of my regular vocabulary these days, being a part of organizations like First Descents and 13thirty Cancer Connect, having friends dealing with cancer and even a few who have passed away, it’s hard to separate myself from the feeling that I am a completely different person now. I’m so much older, having faced a possible expiration date to my short life, and overcoming the odds. Well-meaning people try to be encouraging with phrases like, “You look great! You must be so happy to move on! It’s over and done with- what exciting things are you doing now?”

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At my First Descents Tarkio white-water kayaking program – August 2016

But if you’ve fought cancer, you know that it’s never “over and done with” in your mind. It’s not something you just “move on” from.

This past summer, I attended the First Descents Tarkio white-water kayaking trip. I’ll be honest, I almost didn’t get on that flight because I was afraid of the limitations my body still deals with (such as a dysfunctional shoulder, daily pain and soreness from the neck dissection), afraid of not knowing anyone, afraid of what I might have to face.

But I pushed myself (with the insistence of my awesome sister) to get on that plane and fly across the country to experience what ended up being one of the most pivotal weeks in my journey of cancer, recovery, and identity. The people I met became family, the struggles I pushed through on the Clark Fork of the Columbia River, allowed myself to really feel all of the emotions that I had been holding back for so long…it changed me in so many beautiful ways.

On August 24th, I sat on the porch of the Tarkio lodge overlooking the steep path that led down to the riverbed. It had been a long, tiring day on the river, and I was documenting and processing in my journal, penning these words:

“The river brings out the very best and very worst in us. You either press in and conquer, beat yourself up over failure and fear, or you opt out altogether. It makes you feel. The numbness, the facade, the brave face you’ve been wearing for so long to let everyone know “I’m fine, I’m ok, no worries!”, just so you don’t sound like a broken record anymore or like you seem weak – none of that matters. It’s all released into white-capped waves and rapids.”

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Rafting on the Clark Fork of the Columbia River during my Tarkio program

Never in my life had I felt so lost and out of my comfort zone as I did that day. But it felt good. I knew that something amazing was growing and shaping inside of myself. I knew that, by the grace of God, I was still here and had fought through the battle to discover I was stronger, braver, and more alive than I ever thought possible.

As this year draws to a close and I look forward to 2017, I have so much hope and expectation for the new year. My path and my passions have completely changed in surprising and exciting ways. Doors opening, connecting with people that I never would have been able to reach prior to my cancer, relationships, opportunities, and career changes. It’s been an unexpected whirlwind. I’m not “moving on” from what happened, and I never will, but I’m instead using the journey to tap into my greater purpose in this life.

Fighting cancer gave me a deeper perspective, a stronger purpose, and a renewed passion to live this life fully – not based on what others think, or the shallow sense of success and identity that we are expected to strive for. I’m continuing to become who I was created to be, and cancer was simply a part of the eye-opening process. One of the greatest lessons I am learning through this journey is that, while cancer will always be a part of my story, and the nightmarish year my body betrayed me is forever burned into my memory and literally carved into my arm, neck, and tongue…but my identity is not based on my ever-changing circumstances.

I am so much more. And I’ll forever carry the lessons of the river.

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Practicing yoga on the beach in Punta Cana – April 2016

 

 

cross-processed-barnSabrina Gauer is a Rochester, NY-based singer/songwriter, worship leader, public speaker, blog contributor, and freelance creative. Founder of Going Rogue Collective (launching in January 2017!), she is a stage IV oral cancer survivor, passionate about embracing and teaching complete wellness, juice barista at Just Juice 4 Life, and completing her certification in health coaching at the Institute for Integrative Nutrition®.

Sabrina dabbles in traveling, outdoors-ey adventures, yoga, and going for the occasional “run”. She loves coffee, deep conversation, and daydreaming. Her writing has been featured in Cottage Hill Magazine, Elite Daily, Tirzah Magazine, Tirzah in the Word, 13thirty Cancer Connect, and upcoming pieces for Elsie Road Magazine and the First Descents blog. Check out her website at www.sabrinagauer.com!

A Cancer Diagnosis, Treatment and a Living Will?

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All cancer is hard and brings along with it things that most young adults never even think about. My cancer experience started in October 2012 when I was first diagnosed. At the time I underwent my first cancer related surgery I was under the knife for 14 hours. I remember the hospital asking me at my intake if I had a living will. I had never even considered needing one, it was at that moment that I realized it was something I needed to do. Fast forward to my first recurrence in April 2014, I was hospitalized immediately and during my intake you can guess what they asked me. When they brought up the living will again I sheepishly told them no, I didn’t have one. Onward through treatment I never took the time to create one. When round three of cancer hit me in 2015 I was asked again, at this point I was well versed in making jokes about not having my living will taken care of. As many of you can understand, I didn’t want to think about dying. I didn’t want to think about the possibility that any of these cancer surgeries could have a freak accident and result in my never waking up. I didn’t want to think about it. I am young, invincible, and I shouldn’t have to think about what happens if I die (even if I have cancer).

Attending First Descents gave me many gifts, one of them was an outlook on the rest of my life. I realized one night while in West Virginia that having a living will didn’t mean I was going to die. It meant I could live more freely. It meant I didn’t have to worry about what would happen when I was gone. It was a weight lifted off of me, as an added bonus I didn’t have to be embarrassed anymore when the hospital or doctor asked if I had it taken care of.

Upon return from my FD1 experience one of the first things I did was talk to my husband about the fact that we needed to get this taken care of. He scheduled a meeting for me with an estate planner, I quickly named her my death lawyer. When I went to meet her we talked about all of the things that I felt like a young adult shouldn’t have to talk about. There were a lot of words thrown around like beneficiaries, estate trust, medical power of attorney, financial power of attorney, and even funeral planning. I thought it would be scary and depressing. I even told the lawyer that I had dubbed her the death lawyer. She told me that she liked to think of herself as a life lawyer, because she helps plan things for you so that you can live your life. That is what it is all about right? Being able to live our lives and be out living it!

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So, have you taken the time to meet with an estate planner and organize your living will? I know that I felt like I didn’t have any assets when I walked in to meet with the lawyer. When she asked me if there was anything of any value that I wanted to leave to anyone specific literally the only thing I could think of was my white water kayak and gear. If you have been on white water you will totally understand this! It wasn’t until a week later that I realized I had many other things of value that I should leave to people, but hey the kayak was my first thought!

If you don’t have your living will yet, first, please take the time to find an estate planner to help you. After you find your planner, take a few minutes and consider the following:

1. What type of financial assets do you have? – Consider life insurance policies, bank accounts, retirement accounts, stocks, bonds, and any other type of financial assets. I completely forgot about a life insurance policy I have until months after I created my living will, by thinking about this before going you will have a better chance at thinking of all your assets.

2. Who do you want to be your beneficiary and financial power of attorney? – Think about which two people would you want to manage any financial assets. My first person was easy but I really had to think about who I would want to name as my second person in the chance that my first named person wasn’t available.

3. What physical assets do you have which you want to name to specific people? – Do you have any assets that you want to ensure go to a certain person? The living will is the place to let your wishes known. These physical assets don’t have to be big and expensive, they can be something sentimental that you want to ensure your best friend gets. My estate planner left a place in my binder where my will is located so I can add to this as I think of things I would want people to have.

4. Who do you want to have as your medical power of attorney? – Think about what you would want your end of life care to look like, then think about who you believe would actually follow through with those plans. – I opted for two people here too. My husband is one and a friend is the second. I felt that my family wouldn’t be able to actually follow my end of life wishes so I had a conversation with the friend to ensure that she knew exactly what I would want and where to find the documents if it ever came to it.

5. What do you want your services to look like when you die? – Do you want a funeral service, cremation, open casket, closed casket, celebration of life, big service, small service? What about flowers, music, donations? What do you want it to look like? All of these are pieces to consider when planning what you would like your services to look like. This is an ongoing discussion point for me. I know there are things that I absolutely want to happen and others I know I do not want to happen. I have even met with a funeral director to find out options.

So there you have it, some things to consider so you can be prepared when you go to plan your own living will. I hope that you have an amazing estate planner, death lawyer, or as I now refer to mine life lawyer. I hope that getting your living will together lifts a weight off of your shoulders. A weight you might not even realize is there. I hope that it helps to facilitate you in your goal of out living it!

 

left-eye-9-1Erica, Left Eye, is a 31 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she can be found roboting or heading up the STEM program at the school where she is an educator. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with FD, chatting it up with her FD Family, and spending weekly visits with the Hoosier Kayak Club. Follow Left Eye on her own blog,www.tealelfs.com