“When you learn, teach – when you get, give.”
What is awareness if we do not teach the things that we become aware of?
Today is Neuroendocrine Cancer Awareness Day, which is something I was not aware even existed a year ago. A year ago today, I was being told by cardiologists that there was nothing wrong with me and to “continue taking your heart medication if it makes you feel better, but it’s probably not necessary.” Let me clarify what “nothing wrong” meant:
It meant that my heart rate, which continued to fluctuate between 50 to 140 BPM, was within “normal” range to cardiologists. An otherwise healthy 25 year-old with a heart rate that raced up to 140 BPM was “normal”. But other than that, my heart showed no abnormalities. So that meant nothing was wrong with me. A seemingly healthy 25-year-old with a heart rate into the 140’s was “normal” according to them. So that’s what it was according to me.
A year later I know that what I was feeling was not normal in any way, but I spent six months believing that it was. I spent half of a year lying to myself, trying to convince my body that it didn’t feel as shitty as it did. My family and friends started to believe that I was overreacting about the severity of my symptoms because a cardiologist said there was nothing wrong with me. She had the words MD followed by her name, I didn’t, which meant that she was clearly more knowledgeable than I was. It even got to the point where I began to believe I wasn’t “really sick”, too. That’s how you become stuck. I woke up every morning in a battle with my own body. Her telling me “please stay in bed — you are so tired.” Me saying. “We HAVE to get up. They said nothing was wrong, remember. You need to get up, just push through, you are NOT sick.” I have read so many stories from other NET patients who faced the same exact battle. The battle between what you feel and what you’re being told is the most difficult battle one can face. My body eventually won that battle. And me listening to my body and not the “all-knowing” doctor with the medical degree, led me to a trip to the emergency room at 4 a.m. and a diagnosis of a Paraganglioma. An extremely rare tumor which was taking over my body and causing all kinds of havoc in the process.
Rare diseases are so hard to diagnose. I’ve met doctors who have only heard of my disease in books, making finding proper treatment that much harder. That’s why it is so important to bring awareness to my condition and conditions like it. I had no idea what Neuroendocrine Cancer was or a Paraganglioma before I had been diagnosed with it. I often find myself wondering if I had heard about this type of tumor if my naturally investigative self would have done more research and could have been treated earlier.
My goal is not to let anyone else feel the way that I did, so I will scream from the rooftops to bring knowledge of this disease to people and doctors all over the world. To make a better future for myself, my family, and all the other people in the world fighting this disease and those yet to get a diagnosis. I invite you to join with me and share the knowledge you have gained about NET Cancer — you do it for Breast Cancer — can you do it for NET cancer, too?
Merriam-Webster’s Dictionary defines brave as, “having or showing mental or moral strength to face danger, fear, or difficulty”. But does that really encompass all that is bravery? What if, instead of using our strength to face the fear – we used our strength to embody our fear, to aid us in being brave. What if, instead of a battle – it was a dance. Rachel Turner, who was my life coach the months prior and during my Paraganglioma diagnosis, wrote an incredible book called Brave and Afraid. The whole thing is brilliant. She mentions in the book a conversation with her dad, in which she talks about how she is trying to “punch her fear in the dick”. Rachel’s bluntness is one of her many qualities that drew me to work with her. She continues on illustrating the conversation; saying how her dad explains to her that fear is a normal human emotion, and to instead, imagine dancing with her fear instead of dicking kicking or fear punching it. Rachel goes on to explain that, instead of trying to remove this “thing” from your life, understand that you can’t ignore what’s real. So instead, try and imagine yourself dancing with your fear, to feel what it’s like to move with that feeling instead of away from it (Turner, 2019). This concept was so foreign to me at the time that I read Rachel’s book. I thought that being brave meant not being afraid, and just barreling through life with a make-shift bullet-proof vest on, hoping no one sees the blood starting to soak through my shirt.
“You are so brave.” I think this is the statement I have heard the most throughout this process. But what everyone lacks to see is the amount of fear that walks hand in hand with that brave. There is a lot of unknown with my genetic disorder, as with most rare diseases, and with the unknown comes a lot of fear. Not knowing if or when I will get another tumor, is terrifying. That’s a hard thing to just stand up in the face of, and just “be brave”. In order for me to be brave, in the face of the obstacles that life has presented me with, there are a few things I have needed to accept.
- I cannot do this with the absence of fear, no matter what I previously thought.
- I don’t need to know what the future holds in order to make it through today.
- I have to dance with my fear. The macarena preferably.
- I am allowed to be afraid.
Let’s not confuse being brave with being invincible though. If there is one thing the last year has taught me, it is that I am human. I am vulnerable. And life is a gift and not a promise. So be afraid. Feel fear. But also, be brave. Because you are.
A misspelling in my DNA, a simple error to bring on a lifetime of pain.
A conversation waiting to be had – but what on earth would be said.
An apology – would that suffice? For years of heartache and strife.
Would a simple conversation do? Would I even want to talk to you?
I often find myself thinking back to my past. I wonder, what I would say if I could write a letter to younger versions of myself. Knowing what I know now, of course. What WOULDN’T I say? What would the letters to “past me” say, when “present me” feels so unclear on how “future me”, is going to get by? Ya know, with the whole genetic disease canon, ready to shoot tumors out at any moment, and all.
What would I say to 5-year-old me? Just barely made a dent in the world. Would I tell her to spend more time enjoying life? To play with her siblings more. To not worry about getting messy – it’ll wash off. To paint the world with the colors in her heart. To never dull her sparkle, but maybe not wear that Bride of Dracula Halloween costume for picture day in second grade. Would I tell 5-year-old me that school can be fun contrary to what her brother keeps telling her? To keep reading and learning. Also, that her mom really LOVES when she calls her at 9 pm to pick her up from sleepovers.
How about a letter to 10-year-old me? What would that letter entail? Would I write to her about the boys she’ll meet? I bet I would tell her about her first period – and how she gets ice cream after so it’s ok. Would I tell her she meets her dad? But not to worry, because he’s a good guy. I would have to tell her that she’s about to meet one of her best friends and not to be deterred by the animal print. The two of you will go through everything together. Don’t worry, she’ll stick around forever. I would tell 10-year-old me not to take the next few years so seriously, and that a few great friends are better than a bunch of untrustworthy ones.
15-year-old me would be the hardest to write a letter to. Would I tell myself about my first heart break? How it’s going to suck for a long time, but it DOES get better. Would I warn her that the next couple of years are going to be tough but that she is tougher? Would I tell 15-year-old me to enjoy the little things? To relax while she can. To love her friends. I would tell her not to settle. To believe in herself. Make sure she spends as much time with her grandma as she can. The last thing I would tell myself is she’s going to meet someone who will make one of the biggest impacts on her life near the end of this chapter. It will be rocky at times, but you need her more than you know.
20-25 are big years. Some of the biggest for me. Some would say comparable to Mt. Everest… Okay, I’m “some”. So, what would I want 20-year-old me to know before climbing Mt. Everest? Probably that she’s stronger than she thinks she is. That she is going to lose A LOT – BUT she is going to gain even more. I’m not talking about weight, stop worrying so much about that. I’d write about how she’ll get a new job in a new city and how J&R will become more like family than bosses. I would tell her that sometimes taking comfort in people from your past is ok. Just be prepared to accept the consequences. People have a hard time changing. Never take advantage of breathing. To trust her instincts, except for maybe with that one guy. In that situation maybe listen to R. I mean come on – we ALL knew that was a terrible idea. You meet your person over beer and mac and cheese burgers. It’ll be one of your most important friendships – you got lucky. You’re in for quite a surprise at 23. I promise you just need to make it until then. The Macarena works. Grab a map. You’re about to go on a journey to find yourself.
25-year-old me. What is there to say to 25-year-old me? I think that I would just tell her to prepare as much as possible. For anything. This next chapter is going to be really tough. Especially the next year and a half. I don’t know much more now than I knew then, except that life is REALLY complicated. Lean on Mike when you need to. Trust your body. I would tell myself that she has incredible friends and to let them help her. It doesn’t make her weak. That even though the future is going to start to look unclear and scary, that she can do this. One step at a time.
You see, there’s all these things I would say to myself. Little letters I would mail in purple envelopes. To ease the stress and pain. To give myself hope and courage in the times that I’ve felt low. To know that there is a light at the end of the tunnel. Here’s the thing though, I am scared of tunnels.. And I can’t write younger versions of myself letters. Well I can, but I spilled wine on the instruction manual for my time machine. So, they aren’t getting anywhere. What I can do though is, avoid tunnels like the plague, because … well … irrational fears. What else I can do is write letters to future Caitlin. To ease the stress and pain. Make myself feel less alone. But that’s a letter to be mailed at another time.
August 16th, 2018
“If it goes above 150 again, we’re leaving.” Mike repeats, referring to my heart rate, as he looks at my Fitbit.
Mike, Pizzy, and I are sitting what seemed like 30 flights up, in Terrace Section C of the Mann Music Center; listening to what I can only explain to you as the sweet, sweet, sounds of a baby angel. Or as some refer to him – Ben Folds.
“I’m fine.” I say. “I don’t want to leave.”
What I wanted to say was: “I am pretty sure I’m having a heart attack. I’m about to be THAT girl who died at a Ben Folds concert.”
August 16th, 2019
It has been exactly one year since that concert. 365 days.
Yes, my heart rate did go above 150 again that night. No, I was not having a heart attack. My body was just being taken over by a tumor – but we wouldn’t know that for 7 more months. I also, much to my surprise, made it through that night without my heart exploding from my chest, and succumbing to what I thought was my impending death.
One year ago, today, I SAT at a Ben Folds concert, in Philadelphia, Pennsylvania, with a resting heart rate of 120-156. Notice I said sat. I was not dancing. I was not running. I wasn’t even walking. I was sitting. With a heart rate in the mid 100’s. I felt dizzy and nauseous. I could feel my heart pounding. Objects were becoming blurry and my head was beginning to hurt. All symptoms that I would eventually find out were related to my Paraganglioma (Pear-uh-gang-lee-oh-ma. Wow – that was pretty good). That’s when I gave up.
I remember looking over at Mike, feeling so defeated, and telling him I was ready to go home.
Driving home that night, I made the decision to call my family doctor the next day. I had been living with my elevated heart rate for two months at this point, but it had never gotten this bad before. [I walked around with full blown pneumonia for a week the previous year – so it takes a lot for me to be concerned about health-related symptoms. *Not that I condone this, it’s just the result of working in the medical field.] I was terrified that night though. I remember going to sleep being worried that I might not wake up the next morning. Something was wrong with my body – and I knew it.
Little did I know, that decision would be the first step of many on one of the hardest journeys of my life. A journey that unfortunately will never reach an end. The journey of living my life with a rare disease.
When I found out about my super uncool gene mutation in July, I needed something to use as an outlet for all of the emotions I was feeling. Well, something other than chocolate peanut butter ice cream and quesadillas. As I began journaling and began processing (not very well at first) this new information about myself, which sucked, I realized a few different things.
- The more I write the better I feel
- This feels really lonely at times
- I have A LOT of support – not everyone has that
- I have a platform and a voice that could reach out and help other people
- I can do hard things
After those realizations, deciding to start this blog that you’re reading currently, was an easy decision. Opening up about one of the more personal parts of my life – not so easy. As it turns out, 90 percent of the people that know me – didn’t even know I had a tumor until weeks after I had the surgery to get it removed, and most still don’t know the type of tumor I had. Even more people are also learning for the first time now about my gene mutation and how rare it is. You see, I have been very private about my medical journey over the past year. Until today.
We all have our “why’s” for why we do the things that we do, whether it’s for the people we love, for recognition, or to help someone in need. Whatever your “why” may be. My “why” for writing my blog is simple. If I can help one person feel less alone in this mess of a process, then my heart is happy. You may never truly know how lonely that one-in-a-million can feel until you find yourself as that very one.