The people that you meet

Day 10 in the hospital was a Terrible, Horrible, No Good, Very Bad Day. I have since referred to Day 10 as one of the worst days of my life. Anyone who saw me that day noticed that I looked Terrible and Horrible, and that I was not myself. I had just pulled out my own NG tube (an awful thing that goes up your nose and down your throat) in a fit of extreme discomfort and effort to have some control over my body, upsetting my nurses and my family. I nervously awaited my morning visit from my surgeon, but to my surprise, he was unfazed. My kids came and saw me for the first time since my surgery that day, which was wonderful, but I'm glad the then newly 2-year-olds will not remember their visit. However, I will always remember that dark day. This is both a fortunate and an unfortunate thing. Why remembering my Very Bad Day is unfortunate is obvious. The first few days in the hospital are hazy memories, which is probably a good thing, but Day 10 is crystal clear. Fortunately, my Terrible Day 10 led me to people who helped my mind find a path towards recovery. 

I have yet to knowingly meet someone who has undergone my type of surgery face-to-face. We're a rare bunch. I don't believe I have mentioned the type of surgery I had. I had a pancreaticduodenectomy, more commonly referred to as a Whipple procedure. Overly simplified, I had parts of my digestive system removed (including the tumor, obviously), and then the remaining organs were rerouted and reconnected. Before I had the surgery, I was warned that recovery could take 6-12 months. I share these details to illustrate why meeting someone who has "been there" is so essential to healing the mind. On or around my Very Bad Day, or Day 10, a kind woman I met on a Facebook "Whipple Warriors" group CALLED THE NURSES' STATION AT THE HOSPITAL on my behalf and told the nurse who answered the phone a few ways to help me out my darkness. In this small act of kindness, a virtual stranger became a friend. She talked to me on Facebook and expressed that if she lived closer (she lives several hours away) she would come and visit me. She empathized. She listened. She knew the pain I was in. Eight months later, I know she is following my blog because she comments on almost every post. Knowing I was not alone was enlightening. She is not the only person I met as my body healed, but she was the first Whipple Warrior to reach out to me.

In the coming weeks I would meet more people who I will never forget and hope to meet in person someday. I met another educator who underwent the Whipple a week before I did for noncancerous cysts. Being a week ahead of me, he gave me small glimpses of hope that soon I too would be able to eat a bagel with cheddar cheese for breakfast. We bonded over our pain and darkness, but also over our recovery. We shared a common addiction to isotonic beverages (he liked Vitamin Water, I had to switch to Gatorade when I puked Vitamin Water one too many times). 

Amazingly, I met a wonderful woman who had had the same type of "sort of" cancer as I did, but her tumor required a distal pancreatectomy (the other half of her pancreas and spleen were removed). Hers was removed a few days prior to mine. I say "amazingly" because this tumor is so especially rare. There are about four thousand members of the "Whipple Warriors" Facebook group (still an elite bunch), but there are only 69 members of my tumor-specific Facebook group, many of whom do not live in an English-speaking country. Let that sink in. In the 1.5 billion Facebook users, only 69 of us have found the Frantz/Pseudopapillary tumor group. There are more, to be sure, but we are a really, really rare bunch. It's entirely possible that she and I were the only people in the world that had this tumor removed in January 2015. She lives in Miami and I can't be more thankful for our virtual connection. We will meet someday, hopefully with our families (she also has two young children), and we will cry. At least I will. In the mean time, I will text her before every follow up CT scan and oncology appointment. She gets it. I'm not saying you don't get it, but she gets it on such a personal level that I feel less alone. 

I am so thankful for these three individuals, though they only scratch the surface of support my family and I have received over the past year. They led me out of my Terrible, Horrible, No Good, Very Bad Days and are still there for the days I veer off path. Those days are few and far between, but I know I will always have those days. We all do, no matter the state of our pancreases. 

Thankfully, there are no pictures of me in the hospital. This is the first picture I shared after my surgery. It was in March following my January "Whipple." It was also my first walk outside. My dog Lola was pleased, as was I. 

Things left out

In my first blog post, Sort of cancer, I briefly touched on why I decided to share my story: to connect with others and to heal. There's a bit more to it than that. To say the way we connect with others has changed over the past ten years would be a gross understatement. Communication has been completely transformed in ways most of us couldn't imagine prior to the widespread use of the Internet. The social media network of Facebook, at least in my corner of the world, has brought all of us closer together in some ways. Friends and family are not lost to physical distance and lack of time to connect. New friends across the globe are made. It's quite incredible, really. However, sitting behind a computer screen to communicate allows us to edit our lives, to put our best faces forward. We've all done it; we are quick to share successes and hesitate to share the less "Facebook worthy" moments of our lives. These are the things left out.  

We all share our lives to different degrees, but because we are behind a screen, we can pause, edit, filter, and omit. I believe there are things we leave out for a few different reasons. First, there are things we probably should leave out, like the mundane details of our lives. Next, we leave things out that we perceive other people either shouldn't know or don't want to know. Finally, we leave things out because we want to paint the best picture of ourselves, simply because we can. Why I left out so much of my illness is a combination of all three of these reasons. 

I remember very distinctly when I started not feeling well. I had heartburn. Admittedly, it was pretty bad heartburn, but this, as a mundane detail of my life, was not shared on social media. Plus, who really wants to know that I was popping Tums like candy, much like I don't care to share when I have a common cold. All of us experience minor illness and discomfort, so to share is almost unnecessary and honestly, a bit boring. One could argue we share the mundane to commiserate and connect, but that's just not me. At least I don't think that's me. Finally, when I did choose to share my illness, I painted the best picture I could for my Facebook friends:

I put my brave face on for Facebook in effort to not appear sorry for myself and not to burden others. A small part of my optimism was also for myself. If I could convince others that I was going to be okay, perhaps I could convince myself of the same. To lend some perspective to how I was actually feeling, I should mention that I started feeling sick about three months prior to this Facebook post, back in early October 2014. I finally went for a CT scan December 16, 2014. So in addition to not feeling very good for three months (downright crappy at times), there was an entire month of me knowing there was something wrong with my pancreas, but not knowing exactly what was wrong with my pancreas. An entire month of not knowing if this "growth" was going to ultimately kill me. There, I said it. I knew that I was "probably" going to be okay (I'll get to that later), but when dealing with a yet unknown diagnosis, your mind goes to dark places. Even with the prognosis of "probably okay," I didn't know what that would look like. I'd probably need surgery, fine. I might need chemotherapy and/or radiation, okay, I will deal with that. There's a small chance I just need a course of steroids and some monitoring (please, please, please let this be the case). I kept waiting for someone to tell me the CT scan belonged to someone else (this never happened, obviously). And this just scratches the surface of what I was going through. To be fair, what my family and friends were going through, too, but this was my body and my tumor. So, there were a lot of things I left out.

I wrote my first blog entry before I chose a title. A conversation with an old friend gave me the idea after she read my entry and said she liked it because I was sharing the things we leave out of our social media outlets. So my writing can deviate from my "sort of cancer" and recovery to other avenues of my life. There's a tongue-in-cheek meaning to "Things left out" as well; there were things left out by my surgeon before he put me back together again (some of my organs!). 

I'm terrible at wrapping things up. Writing conclusions is a weakness I've had since I began writing five-paragraph essays in grade school. So, there you have it. Things left out.