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. 

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 cancer.org). 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.