Thursday, September 24, 2015

How did you know?

One of the questions I always get about being a mom of twins is: "Do twins run in your family?" (Yes.) It's part of our social script, apparently. Another big one: "How do you do it?" (I just do.) I do not mind these questions. Bring 'em on. I also do not mind when people ask me about my "sort of" cancer, my tumor. Tumor is such an ugly word. Even my surgeon said so and started calling it a "growth." The number one question about my growth is: "How did you know?" Even doctors, nurses, and other medical professionals ask me that question when they find out what I've been through. In other words, what caused me to go to the doctor that first time? One word: Heartburn. 

Thanks to "the cloud" I have a record of when and how I started feeling unwell. Here's part of a conversation I had with my husband, Chris, on October 14, 2014:
"It just feels like acid indigestion. Nothing worrisome." Ha. It seemed so inconsequential at the time I mentioned it in passing before Chris reminded me I was due to go to the eye doctor. I had started feeling "off" the week before. I blamed it on an increase in coffee consumption. My kids were not sleeping well and as a result I was not sleeping well, so I drank more coffee than usual. I problem-solved, and stopped drinking coffee. I hadn't had coffee on the day of the above conversation, but you will have to trust me on that one. I'm not going to screen shot every minute detail! Speaking of screen shots, here's another conversation I had about twenty-four hours after the one above:
I still wasn't super worried. I just really, really, didn't feel well. So not well I made an appointment with the first available doctor. I didn't actually make it to my Friday appointment. I called on Thursday and begged for an earlier appointment. They eked me in with a doctor I had never seen before and never saw again, though he was a huge important part of what led me to be diagnosed. Nearly a year later, I am thankful that he was the one who had 15 minutes to talk to me. I didn't really care for him at the time, but he knew something was up. 

I really don't mind talking about my "growth." I also don't mind talking about my twins. The only question that crosses the line is: "Are they natural?" Um, what? I haven't had any questions that crossed the line about my tumor. Not yet, anyway. So if you're curious, ask away. And if you have really, really bad heartburn, go see a doctor!

Saturday, September 19, 2015

Pleather shorts theory

Remember the store Hot Topic? The one you (or your kids) went to buy trendy "goth" style items? Turns out it still exists. The "Pleather Shorts Theory" is based on an experience my friend had (and I witnessed!) at Hot Topic nearly twenty years ago. 

Liz (the friend) and I were at "The Mall" with her mom. We were cruising the various stores, as children of the 1990s so often did for entertainment, and we, of course, wandered into Hot Topic. There Liz saw a pair of very, very short pleather (fake shiny leather) shorts. She just HAD to have them. But, since we were 14 and didn't have our own cash (at least not enough to buy pleather shorts), she had to ask her mom. Once we found Liz's mom and dragged her to Hot Topic, of course she said no. However, with the "No" came the suggestion: "Why don't you get some of this colorful clip-on fake hair instead?" Wait-what? Liz's mom just gave the okay for red clip-on hair. Of course Liz went with it. Thus, the Pleather Shorts Theory was born. Ask for something outrageous that you will NEVER get (short, short, shorts), then ask for the mildly outrageous item that you really wanted anyway (clip-on hair). Try it some time. It works!

Now, what does this have to do with having a giant tumor in my pancreas? Plenty, actually. Think of the story from the perspective of Liz's mom. Your highly intelligent leggy daughter wants super short pleather shorts, and she's only 14-years-old. Shocking request, right? Of course Liz's mom was thinking "Not a chance in hell." So she decides, to Liz's advantage, that this colorful clip-on hair is a much better alternative to pleather shorts and likely to appease her daughter. She was right. Liz got fake hair and didn't ask for pleather shorts again (that I know of), and Liz's mom spared herself and her daughter of a shocking fashion statement. 

Are you following? When I had a cat scan, I got a phone call an hour later saying there were changes to my pancreas (shocking, worrisome, etc.). The next day I met with a very kind gastroenterologist who told me that I had what appeared to be a sizable tumor in my pancreas and it might be a pancreatic neuroendocrine tumor, which may or may not be pancreatic cancer (the Steve Jobs pancreatic cancer, if you are at all familiar with the celebrity "faces" of pancreatic cancer). My exact response was, "Oh, shit." Super, super shocking (like super, super, short shorts). Fast forward a month later, a whole freaking month, to actual diagnosis. The same kind doctor called me to tell me the biopsy revealed a pseudopapillary tumor in my pancreas. WHAT A RELIEF! The pseudopapillary tumor was the fake clip on hair in this story. A much, much better alternative to neuroendocrine cancer. A recap: the doctors and I thought I might have neuroendocrine cancer (pleather shorts). I actually had a relatively indolent (slow growing) tumor called a pseudopapillary tumor (fake clip-on hair). So I'm Liz's mom in this story. I was relieved by a scary diagnosis, but it was WAY less scary than what was originally suggested. 

In the month waiting for the biopsy to take place, I had learned a bit about the pancreas. I knew that neuroendocrine cancer had a 5-year-survival rate of anywhere from 16-61% (according to I also knew that pseudopapillary tumor patients had a 5-year-survival rate of around 95%. Which would you take? The 95% prognosis, obviously. So the diagnosis was actually a relief. A huge relief. The Pleather Shorts Theory definitely applies. 

Of course, there's more to this story. Neuroendocrine tumors aren't always cancer, but when you aren't sure if you have cancer or not your mind explores the worst. A cancer counselor I saw helped me see that for that month I was both living with cancer and not living with cancer. This did some damage to my mental state. The prognosis for my actual tumor is fantastic, but I would obviously rather not have had it. I got the "good" pancreatic tumor. But I still had a "low-grade malignancy," and I have to live with the thought that it might come back (but it probably won't). I'll take that fake hair over the pleather shorts, but I would prefer not to have stepped into Hot Topic in the first place.

Sunday, September 13, 2015

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. 

Thursday, September 10, 2015

"Sort of" cancer

I have never felt the need to write down the birth story of my twins. I went to the hospital, birthed 2 healthy babies, it was the best day of my life, The End. About two years later, I had some of the worst days of my life, from finding out there had been “changes” in my pancreas, to the diagnostic events that led to a complicated 11-hour surgery with a lengthy recovery process. While my body has mostly healed, I am still trying to make sense of what happened to me. I am sharing my story to admit that I “sort of” had pancreatic cancer (I’ll get to that later), to heal, and to connect with others who may find some solace in the fact that they are not alone in facing a difficult situation.
I’m going to do my best to tell my story topically rather than chronologically. If I told my story in chronological order, it would begin in October 2014 with an awful case of heartburn and a trip to an abrupt physician. The ultimate diagnosis wouldn’t happen until 3 months later, but I feel it necessary to lead with the proper naming of my condition. I had a “solid pseudopapillary neoplasm” located in the head of my pancreas. A neoplasm is a fancy way of saying “a growth that shouldn’t be in your body.” A neoplasm can refer to either a benign (non-cancerous) or cancerous growth. But how does one “sort of” have pancreatic cancer? The term “pancreatic cancer” usually refers to adenocarcinoma of the pancreas, which is a highly aggressive form of cancer that leaves far fewer survivors than victims (this is the cancer that took Patrick Swayze). I did not and do not have adenocarcinoma. I did not and do not consider myself a cancer survivor, though if you visit the Johns Hopkins website, there under the “Neoplasms of the Exocrine Pancreas” a solid-pseudopapillary neoplasm is defined as a low-grade cancer. One of the top hospitals in the United States of America classifies my tumor as a cancer of the exocrine pancreas. I say I “sort of” had pancreatic cancer because a) I don’t want to admit I had cancer, and b) I don’t want to make light of or compare myself to those who are fighting much tougher battles.
Putting this "out there" is a big risk for me.  I'm not a particularly private person, but I tend to be a positive person and I haven't shared my darker moments, of which I've had plenty. As of today, this is the only post I've written. I wrote it about a month ago, and I've been debating publication. I decided to go for it. Since I'm telling the story of my "sort of" cancer topically, I have a few topics in mind already. Next up, why I have chosen to title this blog "Things left out."