Sunday, October 4, 2015

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. 

1 comment:

  1. loved reading your post! I had a difficult time recovery from the open whipple pancreaticoduodenectomy as well. I wish I had been better educated about the proceedure and recovery. The actual people that have gone through this surgery truly know how you feel and deal with the altering changes. May God continue to bless us as we try and move forward!