Scars

I bet nearly everyone has a scar or two once they reach the age of 33. My two-year-old already has two on his chin. Poor kid will have patchy facial hair. Hopefully he doesn't want to be a bearded hipster or Santa Claus when he grows up. I certainly had more than a few scars before I got my Whipple. The Whipple procedure (that nasty surgery I had to remove my tumor) left me with 5 new physical scars on my abdomen. No biggie. I had a robotic Whipple, so 3 of my small incisions housed robot "arms" for 11 or so hours, and 2 of my scars are from drains put in place after surgery. All of my scars are less than an inch long. If you are interested in seeing a picture, click here. (That 6th scar in the middle is a remnant of my late adolescence, a scar from a navel ring.) I have no problems with showing off my battle scars, but I do not want to subject my abdomen to the reader who would rather leave it to his/her imagination. 

I should add that the surgeon had to remove the tumor from a much larger incision, so he re-opened my c-section scar and removed it from there. Also no biggie; it healed rather quickly. Now nearly 9 months later it is barely visible. 

So why am I writing about my scars if they are no big deal? To stress the point that even though I look okay and "normal," looks can be deceiving. My insides were sliced and diced and reconfigured. That took MONTHS to heal. I'm still healing. Some days I don't feel great physically, some days I don't feel great mentally. This could be said of anyone, especially those who suffer from an invisible chronic illness. 

Several weeks after my surgery I visited the dermatologist. He saw my incisions and wondered if I had had a my gall bladder removed, a fairly normal occurrence in my age group. When I said, "No, I had a Whipple," he was surprised to say the least. He asked plenty of follow-up questions, such as why, what's the prognosis, how am I feeling, etc. I've seen him twice since then and each time he asks relevant questions about my healing and "new" (but not improved) digestive system. He's familiar with the surgery and has a family member who had a Whipple for bowel cancer about 10 years ago. He knows what a big deal this surgery is; he knows there are lasting effects. 

My small scars are the only evidence to the world that I had a pancreatic tumor, and even the scars suggest I had routine gall bladder surgery. People in my life often inquire about my health and I most often respond in a positive manner, because I feel pretty darn good considering. However, the question: "So you're totally fine then?" or some variation often follows. How do I answer this question? The questioner wants to hear that of course, yes, I'm totally fine, back to normal, etc. Or they say, "Good thing that's behind you" or the like. I'm not totally fine. The surgical procedure is behind me, but I'm still recovering and there are physical effects I will likely endure for the rest of my life. I'm not complaining, I am so thrilled to be alive and feeling as good as I do the vast majority of the time. My physical scars may be fading (thanks, Mederma!), but I have been altered. The surgery and diagnosis will never be totally behind me. I will never again have a gall bladder and will always be down half a pancreas. I will always know that my sort of cancer could come back, though it probably won't. Every time I get a follow-up scan I will get that "what if" feeling in the pit of my stomach. Odds were in my favor that I didn't have a pancreatic tumor in the first place, but I most certainly did. These are the scars that you can't see. They too are fading, slowly, but they will never disappear. I will always be thankful for good health and empathetic to those whose health suffers. When you ask me how I'm feeling, I will almost certainly say "pretty good," because that's the truth. For 33 years I accrued scars whose origins were not memorable (besides that belly button ring!), but on January 20, 2015, I received more than a few very memorable new scars. I wear them proudly, knowing it could have been so much worse. We all have visible and invisible scars; I know that so thoroughly now. They remind us of where we've been an how far we've come. They remind me that I'm alive. I'll take it. 

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!

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. 

"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."