What Does it Mean to Be a Survivor?

Today is National Cancer Survivors Day and its my 4th celebrating as a cancer survivor. In the grand scheme of things, I suppose I’m still relatively new at this, but I feel like a veteran with the massive amount of spiritual and emotional growth I’ve gone through since my diagnosis. Its funny how time can feel both fast and slow, like light refracting through a prism differently when we change the angle at which we view it. I suppose words are similar — their meanings can shift depending on personal perspective.

Today I’m pondering the word “survivor,” as many do at some point after a diagnosis. In the traditional sense of the word, to “survive” means to outlive or outlast, and that’s how its used in the cancer world, more or less. It works because its objective and describes the literal process of living during and after a diagnosis. It’s simplistic (and far too basic for me).

However, the beautiful thing about language is it evolves over time as people begin to use it in new ways. In a more recent definition, to survive means “to continue to function or prosper despite” adversity — to withstand, to endure. Now, these words pack some serious subjective power! While the first definition conjures a mental image of a lone person on a deserted island, the second definition gives that same person in the same situation a set of clothes fashioned from palm fronds, a spear made of seashells and driftwood, and a fire cooking fresh caught fish beside them.

I can’t speak for anyone else, but I want the main character in my story (that would be me) to be a resourceful, hopeful spitfire who makes the best of their situation. They don’t just keep living, they prosper and are quite frankly amazing at it. The see the situation, realize it sucks, and try to make it better anyway.

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See, a funny thing happens with words. Just like language evolves based on our use over time — the words we use, and how we define them — can change our perspectives on things. The more I see myself as a badass persisting despite obstacle after obstacle, the stronger I feel. However, if I see myself as just hanging on waiting for the proverbial ship to save me, I feel much less empowered. I’m still in the same exact situation — Gilligan, stranded on Cancer island — but when I shift my perspective of what it means to survive, I shift how I see myself on that island. Zooming out into real life, this equates to more positive moods, resilience, motivation to grow as a person, etc.

So what does it mean to be a survivor? For me, it means enduring the hardships cancer brings and carrying on — sometimes prospering, sometimes just putting one foot in front of the other — but always knowing I’m stronger because I keep going. I’m not going to let one lousy shipwreck ruin my one shot at living an amazingly beautiful life.


Reminiscing on Death

It’s an odd feeling to look back at myself 4 years ago, just a few months shy of my first Rebirthday, and remember how hard the Summer months used to hit.

The sounds of the crickets and the spring peepers would churn up a dark feeling of dread in the depths of my gut. In some desperate attempt at “control” I would go through my calendar from the year before, trying to remember exact dates of when the symptoms started, how I felt, etc. I grasped at anything to try to piece it all together and make sense of it. I tried to figure out what caused it — was it my small jaw, my misaligned teeth, my affinity for coffee on night shifts, my queerness, that one time I had Mono in high school?

And when I wasn’t trying to explain WHY this happened, I fell into depression mourning my life before cancer — my “normal” life. Life when I didn’t have to worry about what I was eating or how long it would take or if I would choke. Mourning the way I could kiss my partners, the ability to just wake up in the morning without my tongue sticking to the roof of my mouth from dryness, and not having to constantly remember to have water, a mouth lubricant, or some other saliva-enhancing product with me wherever I went. When an earache was just an earache and not the harbinger of a 2am tailspin ending with Googling “tongue cancer recurrence.”

But slowly, inconspicuously, like the green leaves returning every Spring, these feelings began to change. Instead of fighting the feelings, I began embracing them. I became curious about why I was experiencing them and what they were trying to tell me. I slowly began learning how to accept this new version of me, side effects and all.

Gradually, I realized I needed to give the old me a proper goodbye. I realized I no longer had a need for carrying her around, and she gladly took the opportunity to fall into rest. This reduction of deadweight freed the new me for more learning, more emotional capacity, and more acceptance of what was my new normal.

In Tarot, the upright card of Death is a good card to receive. It symbolizes transformation, letting go, and new beginnings. Ancient wisdom tells us, as the earth shows us, death is necessary to live.

It’s interesting that in our society, we see death as such a horrible thing to be avoided at all costs. Perhaps this is part of the reason why its so hard to let go of things that no longer serve us — relationships, jobs, friendships, habits, etc. We are taught to cling tightly to anything we have, even if its not good for us, and in doing so we have no room left for the better things that await us. Mother Nature shows us this lesson in many ways if we pause to understand. Think about a plant growing with dead limbs still attached. If it isn’t pruned, those dead branches that no longer serve it will bring its demise. When those dead branches are removed, the plant has the capacity to thrive even more than before.

As always, its important to remember that we have the power of AND on our sides. Is it easy to say goodbye to something, especially a huge part of ourselves? Absolutely not. Quite frankly, it sucks. It’s painful and sad and difficult. However, it’s also poignant and beautiful and serene, if we allow ourselves the grace to see it that way. There is no rulebook in life saying a certain event can only make us feel one way or the other. Human beings have an incredible capacity to hold multiple seemingly oppositional emotions at the same time.

I suppose this entire post goes back to my recurring theme of death and rebirth, the phoenix falling to the ashes and rising again. Only now I am recognizing that this process didn’t only occur when I was diagnosed and first entering survivorship, but it is a continual cycle of small deaths of ego and rebirths of new versions of myself that allow me to continue to grow and thrive in my “new normal.”

Its an odd feeling to look back at myself 4 years ago, just a few months shy of my first Rebirthday, and now feel a sense of gratitude, peace, and serenity toward it all. An odd feeling, but a good one.

Body-ody-ody

Does anyone else get a song stuck in their head and then have it there the entirety of writing their blog post? No? Just me? Ok then. . .

I posed a question yesterday for the members of my survivorship Facebook group, and I thought I’d answer it here because I have lots to say (shocker). The question was “what is your relationship like with your body now that you’ve had this diagnosis?” (and for caregivers in the group, I asked if they’ve noticed a change in their loved ones as it relates to their relationship with their body).

Everyone who goes through a diagnosis has a different experience based on personality, previous medical conditions, culture, age, religion/spirituality, ethnicity, gender, sex, previous interactions with the medical community, etc. However, many of us experience the same overarching challenges, I think, and one of those is how we feel about our physical bodies after a diagnosis.

For me, there are a few challenges that relate to this particular issue:

  • Trust
  • Function
  • Aesthetic changes

Trust

This body somehow, for some reason that even the brightest medical doctors and researchers have yet to figure out, one day started making rogue cells that would have eventually killed me.

WTF, BODY?! I thought we were a TEAM?!

I treated you well(ish), never smoked, didn’t drink a ton of alcohol (lets not count ages 21-23), tried my best to eat healthy foods and drink lots of water and wear sunscreen and get regular check-ups and all the things I was supposed to do. And still you betrayed me. RUDE.

In all seriousness, that is what it feels like though: a betrayal. And unlike a relationship with another person, I can’t get away from it. I have to face that head on and learn to accept it and continue loving this body because its the only one I have. It has taken me almost 5 years to not immediately become suspicious of every single ache, bump, itch, or discoloration. I’ve had to learn how to walk a very fine line between becoming overly paranoid and still paying attention for potentially serious clues of a problem.

I have to trust that the physical Stef and the spiritual Stef can both work together to stick around on this planet for as long as possible. And that is HARD WORK after what happened. I didn’t wake up one day and think “I want to feel better so I do, now.” It has been and still is a slow, purposeful process of scanning my body for signs, thanking it for all it has endured, and trusting. That’s something that Stef BC (before cancer, for those new here) never had to worry about.

Function

This one might be the hardest for me next to trust, but its hard to choose sometimes between this and aesthetics. My body does not function the same as it did before the surgeries and radiation, and some days this causes feelings like anger and fear. I’m angry because at my age, I should be able to do more with less pain. I should still be able to work at the bedside, go for more arduous hikes, paddle a kayak easily. . .but fear of injury and pain hold me back from regaining strength. It just plain SUCKS. And I’d be lying if I said I’m not worried about my future as a single person with functional difficulties. I don’t let it run my life, but sometimes the “what if’s” about how I’m going to function get very loud.

Aesthetic Changes

And yes, the aesthetics, things people want to pretend don’t matter but they really do. My face is lopsided when my lymphedema gets bad. I have massive scars. And, related to both function and aesthetics, I miss my freaking voice. I miss being able to sing (fairly) well and I miss being able to roll my R’s (so much for all those years of Spanish). To someone who hasn’t had to deal with loss of these things, I can see why they’d think I should just be grateful I have what I have. . .and I am! I am ridiculously grateful that I had the best surgeons in the world who gave me SO much back in function and aesthetics and saved my life. But two opposing feelings can exist in the same person.

What I think it all boils down to, honestly, is shame. In our world, for whatever reason, we’re taught to believe we have to be constantly happy and if we’re not, we’re ungrateful and should be ashamed of ourselves.

We’re taught that the world is black and white, this or that, there is no in between – – and that’s a straight out lie. The world is gray, everything exists on a spectrum, and duality is a very real thing.

I think once we learn to accept that we can feel more than one emotion at a time, it starts to get easier accepting everything that happened and integrating all the changes into our new lives and healing the relationship we have with our bodies. We can be grateful and angry. We can love our bodies for keeping us alive but also distrust our bodies for creating cancer in the first place. Humans are complex, and we are also adaptive and that is how we thrive. The more we accept that good and bad things can exist simultaneously, the easier it becomes to move forward.

After all, rain falls when the sun shines sometimes, and you know what happens then?

Rainbows appear.

Do The Big, Scary Things

A few months ago I submitted my story for my university’s inaugural Nurse Story Slam. The theme was “Finding Joy Through Adversity” and I thought well, hell. I know a thing or two about this…

However, I didn’t think I’d honestly be chosen to tell my story. I mean, lots of nurses have amazing stories of overcoming horrible events to rise back up and find joy. Ohio State is a big place and the submission was open to students, alumni, faculty, and staff. So I sent the submission and then forgot about it to focus on my final few weeks of grad school.

A few weeks later, I got the email that I was chosen as one of the 6 nurses to receive professional storytelling coaching and tell our stories live on stage at The Ohio State University.

I almost said no.

I almost did my usual overthinking and found dozens of reasons not to accept this amazing opportunity.

But I took a chance and said yes. I didn’t know how I was going to work it out but I knew I’d regret it if I didn’t try.

So I flew to a new city by myself to meet with people I only knew from Zoom meetings and then get up on stage and tell over a hundred people my story.

My tongue cancer bestie drove over 3 hours to be there and sat in the front row, center seat. She was the only person I could see from the stage. A few of my classmates from my online program were there, too.

I was fairly calm until my name was announced. I walked out on that stage and I suddenly felt like I was in A-fib; my heart had to have been beating 180 beats per minute! I thought “welp, this is how I die, on stage in front of these poor people.”

But I clearly didn’t die. In fact, I made it through the entire story barely missing a beat even when my mic decided it was over it. And in 7 minutes it was all over and I felt amazing.

And now I’m sharing it here. I’m sure most people who read my blog already follow me on social media or know me irl, but for those who happen to stumble across this and need a little nudge to go do the thing, here it is: do the thing that scares you. Do it scared. Do it absolutely terrified and wondering if you’ll make it through. You will. It may not be perfect but it will be yours and no one will ever be able to take it away from you.

Permission to Live

Today I attended the beautiful, heart-breaking funeral of a fellow young adult with cancer.

I don’t know what to write, because everything I put down sounds selfish to me. But, I guess that’s the nature of Survivor’s Guilt. So. . . I guess I’ll try to write without overthinking how it sounds and just let out what I need to let out. Here we go. . .

Since my diagnosis, I’ve met many other survivors and lost a few, too. Very few are close enough in proximity that I have the chance to meet them in person. Marcie was supposed to get better after a vacation and a minor procedure and we were supposed to get coffee and start the healing process with other survivors. She was supposed to be preparing for the holiday season with her family. But that obviously didn’t happen. She got sicker and never got better. And that’s how I wound up at the funeral today.

I felt like an outsider at first. I only briefly knew her, had a few conversations and never met in real life. I wasn’t Jewish and I had never been to a Jewish funeral. I didn’t know her family or friends (except the one who introduced us). I was worried I didn’t belong among the mourners who had known her for years or their whole lives. I felt like I shouldn’t have been allowed to hear her father’s beautiful words, her young son’s hitching sobs from the front of the room, her cousin’s heartfelt tribute and stories of their youth. But then her cousin mentioned that she had wanted privacy during her illness. She wanted to be remembered as the lively, bright, beautiful soul she was. And that’s when I realized she had let me in to a space that few others had been allowed in, and I felt that I did belong. We didn’t know one another well or for a long time, but we shared the bond that only something traumatic like cancer treatment can forge.

It feels weird to say it, but today was healing for me in a way. Not only because I got to pay my respects to Marcie and her family, but because in my own way I was also paying respect to my other AYA cancer friends who have passed over the years, especially dear Carrington.

When Carrington passed over a year ago, I found out weeks later from a friend of hers who tracked me down on Instagram to tell me. You would think hearing this stranger tell me she knew who I was because Carrington had told her about “the nurse who also had tongue cancer and helped her through” would make me feel good. But I felt awful. I cried until I was sick to my stomach that night because all I could think was “I failed her.” Carrington and I had the same type of cancer, we were both single moms, and we were just a few weeks apart in diagnosis and treatment. When I finally started healing from the Hell that was radiation I had told her “it will get better.” But it never got better for her. Logically, I know that has nothing to do with me. I know I can’t heal people physically and I know she probably needed to hear encouragement during her lowest moments to keep her going. But to me, it felt like I set her up. I told her she would get better and she didn’t. I got better and she didn’t. I got to continue going to my son’s baseball games and watch him grow and she didn’t. Somehow, it all felt like my fault. Why should I be allowed to continue and she not?

Unfortunately, those questions are unanswerable. However, today helped me accept that one day I will also be the one lowered into the ground as my loved ones stand in mourning. One day we all will be there.

When I was leaving the burial today, I found Marcie’s husband and their young son and I tried to introduce myself to him, to let him know she had someone there for her who understood the nuances of what she was going through. I was sobbing, and I could barely get the words out. In that moment, that man who just lost the love of his life and his best friend and didn’t know me from a stranger on the street wrapped his arms around me in the biggest hug and told me “I’m glad you’re here. Keep living your beautiful life.”

I don’t know if he knows how much I needed to hear that. I know he couldn’t have known how those words struck deep and validated so much inside me that needed it.

Today, I went to a funeral and I left giving myself permission to live.

All I Want

Sometimes I feel like a ghost screaming at the real world, longing to be heard.

All I want is for one person to turn around and see me,

to acknowledge my effort in just being,

And say “I hear you. I see you. You are real to me.”

Sometimes I feel like a hamster on a wheel,

running faster and faster but getting nowhere.

The world says “keep going, look how strong you are!”

All I want is to be told “it’s ok to rest.”

Sometimes I feel like I’m still sitting at the kid’s table.

The men look down at me with their patronizing gaze

and pat me on the head when I speak up.

All I want is to be told “you belong here with us.”

Rebirth

I’ve spent almost the last 3 years mourning my old self, lamenting the past. I think a lot of people do this, whether or not they’ve faced cancer or another life-altering trauma. I believe it’s a form of anxious attachment to perceived comfort and stability; we feel safe in the known, even if the known isn’t safe or serving us.

Add to that, it’s so easy to look back with rose-colored glasses, to pretend everything was perfect “then”. Looking forward requires vulnerability. It’s scary to become someone new, to face uncertainty, to change. It’s scary to trust that we will not only survive, but thrive.

So many times we get stuck in the trap of ruminating on all the things we can’t change. We embrace mediocrity and suffering because it’s more comfortable than flinging ourselves out into the unknown and hoping we somehow grew wings while we were waiting for the right moment.

But here’s the secret I learned when I finally let go and leapt: the wings were always there. They just never had room to help me fly when I kept them close to my body, afraid to use them.

Superhero Status Achieved

Since my diagnosis first with Charcot-Marie-Tooth (a genetic degenerative neuromuscular disease) and then with tongue cancer (also a genetic thing), I’ve often joked that I’m like one of the X-Men.

If you’re unfamiliar with Marvel’s X-Men, they can best be described as humans with genetic changes that give them a variety of super powers. They’re referred to as mutants. Mystique can shape-shift, Magneto can control ferromagnetic material with his mind, and Storm can conjure up weather events out of nowhere. There are many other mutants but you get the idea. Each of their powers helps them through life challenges.

My first cosplay in 2016. Unsurprisingly, a mutant.

Today I was making the same old joke about having the mutations without the powers, when I realized I do have super powers! I can’t read minds or shoot adamantium claws out of my hands, this is true. But I can adapt and survive and thrive.

I, like the phoenix of lore, have the ability to burst into flames and fall to ashes on the ground, only to rise again better and stronger than before. My superpowers are adaptation and growth. My superpowers are empathy and compassion for myself and others despite the trials I’ve faced.

My super power is being me.

A More Realistic Fairy Tale

The story starts with our beloved heroine, exhausted from slaying demons, sobbing on the floor.

She is alone in her cold, gray tower. Alone except for the demons she grows so weary of fighting.

She has realized there is no knight coming to save her. No army. No one.

And the demons keep marching steadily forward, relentless in the pain they inflict.

She lays down her sword.

This princess is too weak to save herself anymore.

525,600

I finally watched Rent last night after stumbling across Tick, Tick, Boom the night before. It was an eye, mind, and heart-opening experience.

We have only so much time on this earth. Each of those 525,600 minutes per year could be our last. Each is an opportunity to change, to choose love over fear, to cast off the heavy chains of what others expect and become who we truly are…to live la vie boheme.

We all struggle. We all have our vices and our skeletons in the closet, haunting us. But thats the beauty of it! We ALL have those things. We have ALL suffered at some point, regardless of race, religion, sexual/romantic preference, social status, etc. We are all human.

My heart has been so very heavy the last 2 years with all the division and fighting and hatred. I keep waiting for it to get better, for love to finally win. I keep hoping one day I’ll wake up and people will see one another for who they truly are and not what “they” tell “us” to think.

Perhaps I’m being naive by being that hopeful. But I know when I finally leave this earth, I want to go knowing I lived authentically and with compassion. I want to look back and see that I chose love over fear as my guide more often than not.

There are 525,600 minutes in one year. How will you choose to live yours?