Leave your mark (part 1)

Before I found out I had a giant pancreatic tumor, I didn't give too much thought about the impact I was having on the world beyond the stereotypical. I teach, and in my experience us educators really do want to leave our mark on our students. After ten years in the profession, I have had some evidence that I am at least memorable to some students. I live near where I teach, so I have had former students (now adults!) approach me and say, "you taught at Jefferson, right? Mrs. Sparks?" A former student of mine is in school to be a paramedic. I taught him sixth-grade science. That has to count for some amount of impact, right? To be totally honest, I am just so excited to see my old students finding their way in life and finding success. And it's more than a little heartwarming to find out they remember me. I'm self-confident enough to believe they remember me for positive reasons (or I'm just delusional).

I don't believe there's some sort of cosmic reason behind me getting a pancreatic tumor. I just got unlucky. Some people may find comfort in believing bad things happen for a reason, and that's fine by me, but that is not what I believe. No one deserves hardship. The unlucky bit is easier for me to swallow than the possibility I was "gifted" this tumor for a greater purpose. However, in the past year and a half since diagnosis, I have been trying to create my own purpose. I have been trying to leave my mark, because I am acutely aware that making the most of the "now" is so important, as you never know what tomorrow will bring. 

The tumor I had is called the Solid Pseudopapillary Neoplasm (SPN). It's crazy rare. We have a Facebook group, and there are tens of us. Let that sink in... TENS. Less than 100 members, some members are family members of the SPN patients, and this group is INTERNATIONAL. Now I know there are more than 100 people who have had this tumor, but even the largest studies have fewer than 1000 subjects SINCE 1959. To put this in perspective, about 50,000 people are diagnosed with Pancreatic Adenocarcinoma (what people usually mean when they refer to pancreatic cancer) in the United States EACH YEAR. In sum, I'm pretty darn unlucky to get this tumor, but of the pancreatic tumors to get, I'm quite lucky as it's nearly always cured by surgery (which I underwent in January 2015). Every now and then another member gets added to our little group, and us more seasoned members are there to provide support and answer questions. After all, this tumor is SO RARE, the Internet is really the only place to turn facing this diagnosis. A few weeks back I Skyped with a woman from New Zealand who was recently diagnosed. We talked for under an hour, but it was such a powerful experience. I had never actually spoken face-to-face with someone with the same diagnosis. We compared symptoms. She asked questions about surgery and recovery. I think I provided some reassurance. I feel great, and I made sure she knew that. It took about a year for me to be able to say "I feel great," but I really do. 

So my community of SPN sufferers is a mere "tens" of people internationally, but I have been able to reach out to a few of these women (about 90% of people who are diagnosed with SPN are women). This is one way I'm leaving my mark, making lemonade from those life-handed lemons, if you will. It's one way I cope, it's one way I give back, it's one way I try to make sense of this crazy-rare-tumor nonsense. Participating in this extremely small community is just one way I'm attempting to make my mark. In the past year, I've come to a more concrete realization of what really matters to me and the potential impact of my actions. I will title an upcoming piece "part 2," as I have more to say. Thank you for reading.

May the 14th be with you

Were it not for the Google Calendar app, there's a fair chance I'd forget to do something important, like pick up my kids from daycare or give my dog her heart worm preventative (hardy, har, har). That, or I'd have to write stuff down on an actual paper calendar (who does that?!). I know that works for some of you, but paper calendars don't fit in your pocket or sync with your husband's Google Calendar. 

I've had plans for today for months. What plans, you ask? Plans with my BFF to see the Downton Abbey exhibit at the Driehaus Museum in Chicago, of course. Duh. Once tickets were purchased, on the calendar it went so I wouldn't forget and so my husband knew he had to keep track of our kids that day (today).

A few weeks later, I realized that May 14th was also the fundraising walk for Living Well Cancer Resource Center, but no big deal, as it was a morning activity and our tickets were for mid-afternoon. I had made up my mind ages (months, I'm being overly hyperbolic) ago to participate in the walk so not walking wasn't an option. 

Then, after that, we received a birthday party invite to celebrate the first birthday of our dear friends' son. I couldn't swing that, too, but on the calendar it went and Chris took the boys.

So, here's a recap. Today was busy, and I need an electronic calendar. From here, I will tell the story of my day through phone pics.

Picture #1: 

Me and my mother-in-law Mary at the Living Well Bridge Walk

My day started bright and early at the forest preserve (pictured above). My kind mother-in-law picked up my ORANGE t-shirt (it means "Cancer Survivor," in contrast to the blue-shirted people (walkers). We walked with the first round of participants, the honored survivors. I can't say I've experienced anything like that. People cheered as we walked under the balloon entryway with Rachel Platten's "Stand By You" loudly playing to open the 5K. Well, I've never had an opinion about that song, but weren't it for the distraction of talking to Mary and sheer determination, I probably would have burst into tears. Choice lyrics: "Even if we're breaking down, we can find a way to break through. Even if we can't find heaven, I'll walk through Hell with you. Love, you're not alone, 'cause I'm gonna stand by you." Yep, I'll never hear that song again and not feel something. Anyway, we walked the 5K, returned to more loud music and cheers, and I was presented a purple annual to add to my garden, to which I quietly said to Mary, "It's purple! How did they know!" (Purple is the color of the pancreatic cancer awareness initiative, like pink is for breast cancer.) She laughed her wonderful, genuine laugh, and we left the event. I will definitely do that again, though it was weird to be a "guest of honor" of sorts. 

Picture #2:

Me and my BFF Sandi in front of a bunch of cheese at Eataly

The Downton Abbey Exhibit was great fun. The Driehaus Museum is located in a gorgeous turn-of-the-century house (19th to 20th). The exhibit focused on the costumes of Downton, but because of the style of the house/museum, it was difficult to distinguish what was part of the exhibit and what was "just" part of the house. Because of that lack of distinction, I think Driehaus was the perfect Chicago location for the Downton exhibit. We followed up the museum visit with gelato and coffee at Eataly, an overwhelming Italian market of sorts. I left full of caffeine and sugar with a bottle of Limoncello in hand (unopened, of course). Sometimes I need time with my BFF, and what a fantastic backdrop we had today. 

Picture #3: 

Chicken Shawarma from Naf Naf Grill

I've noticed a big part of what I'll call the survivorship culture is returning to normal, or a "new normal" for some. This is absolutely the case for me, but I had a Deep Thought on this the other day (Saturday Night Live reference intended). Some people fight with all they have to make a full physical comeback from the devastation of an accident or illness. I definitely had to fight that fight, but it wasn't a drastic or dramatic fight for me. I had regain stamina and strength over time, and I did, just by living life. More specifically, my then-two-year-olds required it of me. What was harder was eating "real" food in normally-sized portions, something I took for granted prior to my surgery. About one-third of my stomach was removed during the surgery; it's just part of the traditional Whipple procedure. Eating was a source of pain and stress for me for months (I'll spare you the details). There were times I wondered if I'd ever feel good again, if I'd ever be able to eat something other than the BRAT diet and protein shakes again. I now have my answer. YES. I fought that fight hard, and stretched my stomach back out to its normal size (hardy, har, har). So I stopped at Naf Naf Grill on my way home from my afternoon excursion (pictured above). And I ate every last bite. It was amazing, and proof that I'm living my life, in many ways better than before. I appreciate each day, corny as it sounds, but it's true.

Picture #4:

Limoncello. Need I say more?

Here's more proof that I'm back to living my life. Cheers. 

Am I a cancer survivor?

This coming weekend I will be participating in the Bridge Walk for the Living Well Cancer Resource Center in Geneva, IL. I have been intending to walk in this fundraiser since I learned about it last summer, but I have been dragging my heels on actually registering. I have visited the registration page numerous times. It asks for relevant information such as name, e-mail address, etc. It also asks what type of participant you are: adult, child, student, or cancer survivor. Clearly, I am not a child (or a student), but the question I have grappled with for the past year and a half (give or take) stalls my progress to the next page of registration. 

The type of tumor I had is considered a malignancy (cancer), but in the absence of metastases (spread), it behaved in quite the benign (not cancerous) fashion. Surgically curable, or so they say. So far, so good. Does this give me the right to consider myself a cancer survivor? I doubt anyone would call me out on it if I checked this box. "No, Cori, you only had a neoplasm, not a carcinoma." According to the title of this article about my experience, I am a pancreatic cancer survivor: "Attentiveness saved mom's life from pancreatic cancer." Wow. That's still hard to read. 

The aforementioned evidence suggests I should check the "cancer survivor" box. But still I hesitate. Sure, I had an 11 hour surgery and a 2 week hospital stay. Sure, I had a giant tumor. Sure, I see an oncologist. But I don't feel like a cancer survivor. I didn't undergo chemotherapy. The surgery produced "clear margins" and revealed no lymph node involvement. I did not have adenocarcinoma (the Patrick Swayze pancreatic cancer). I did not have a neuroendocrine cancer (the Steve Jobs pancreatic cancer). I had an especially rare tumor with an "excellent prognosis." I got super unlucky (when I say especially rare, I mean super especially rare). But at the same time, I got super lucky. I got the "good" pancreatic tumor. The one that rarely returns, the one that very rarely causes death. My surgery was awful, there is no way to sugarcoat that, but the bulk of my medical journey began and ended during my hospital stay. The lingering effects of my illness seem to have more to do with the surgery itself and very little to do with having had a large pancreatic tumor. I'll own up to being a survivor, but aren't we all? Add "cancer" to the description of survivor, and suddenly I'm not sure I agree. 

I am sure I will be participating in the walk this Saturday. If you're local, I'd love it if you'd join me: Register here. If you don't want to walk but you'd like to donate: Donate here. If you'd like to buy some fabulous Origami Owl jewelry and have 10% of your purchase price donated to Living Well: Shop here. Your well wishes and happy thoughts are also appreciated. Thank you for reading! 

Like riding a bike

Turns out rollerskating is like riding a bike. Once your body learns how to balance itself while perched atop a set of wheels, it doesn't forget. Last night I took my twins rollerskating for the first time, which means I took myself rollerskating for the first time in over a decade. I laced up the borrowed (probably smelly) brown skates with orange wheels while sitting on a wooden bench old enough to have supported my grandparents as they laced up their brown skates with orange wheels half a century ago. I stood up and awkwardly stepped across the patterned carpet (whilst encouraging my three-year-olds to do the same) to the rink, a dimly lit ellipse with a carpeted wall that is probably much the same as any other roller rink in the Midwest, possibly in America. Holding on to the wall and (and my three-year-old), I rolled out onto the rink and was instantly reminded of my many revolutions around the hanging disco balls that decorated every rink of my childhood. The memories from my childhood of the 1980s and 1990s were only intensified as Michael Jackson was played over the sound system, and I was very nearly transported back time-machine-style when C & C Music Factory's "Everybody Dance Now" boomed through the speakers. The memory of movement is curious, it took merely seconds for my body to remember to lean forward and roll forward. Good thing, because a three-year-old on skates requires a bit of support. I remember learning to skate; my childhood best friend Lisa's mom kindly held my hand as I learned to slightly lean forward so as to not fall over. I never became a great skater (I still can't go backwards), but I became a decent enough skater to stay upright, even while my children tested their balance and attempted to learn to stay upright themselves. It would be remiss if I did not mention the last time I went rollerskating. It was about ten years ago for a friend's birthday. Most of us were reliving our junior high days, with the exception of one of my friends, I'll call him V, who had never been rollerskating before. Since I had not had drinks with dinner (and could skate upright), V, who has about 50 pounds on me, leaned on me as we circled the rink along the carpeted wall. It was hilarious at the time, but what I didn't realize is that hilarity and memory of movement would be recalled while teaching my 40-pound kids to roller skate. A drunk 25-year-old is a lot like a 3-year-old on roller skates. 

I find myself thinking about my surgery at odd times, like while rollerskating. Not about the actual procedure, but the fact that I am here and well. I feel great; I am tumor free. It is a privilege to be part of the childhood memories my children are acquiring, and for that I am infinitely thankful. 

Paging doctor google

It was the best of times, it was the worst of times. Information was available everywhere, yet information was available everywhere. You have a need for information? It's likely a click a way. But how to appropriately access and use such information, the lament of librarians everywhere (including myself). 

I should have known better. To be fair, when I started feeling sick I did go to the doctor. He diagnosed me with GERD (acid reflux), prescribed Prilosec, and sent me on my way with an order to return for a CT scan if I didn't improve rapidly (this guy knew something was up). I took the medication as directed and started feeling better, though still not great. Acid reflux is extremely common, so I attempted to explain away my symptoms through Googling "GERD" and combing through the various ways GERD manifests itself depending on the sufferer. Ultimately, I found what I was seeking, justification that I was just suffering regular acid reflux coupled with the stress of working and parenting young children. I also found that my symptoms could be explained by a multitude of other more serious conditions, including pancreatic cancer. As the weeks passed, I continued to consult Dr. Google. As the weeks passed, I kept seeing the words "pancreatic cancer" as part of my search results. I told myself I was crazy, that there was no way I could have pancreatic cancer. I wasn't jaundiced and I was only 33 years old. A couple of months after my initial doctor's visit, I had the CT scan that was originally recommended. Within an hour of receiving the CT scan, I was telephoned and notified of "pancreatic changes" and that it was "unlikely to be pancreatic cancer." The nurse who delivered the news had no other information to share, and it was evening time, so my questions would have to wait until the next day. So what did I do? I asked Dr. Google. Let me tell you that if you use the search terms: "pancreatic changes," you don't come up with anything promising. 

If you've been reading or you know me IRL (in real life), you know that my story has a happy ending. I'm alright. I didn't have pancreatic adenocarcinoma. However, to accurately portray my story, I need to share my obsession with seeking information about my illness. It began with the seemingly benign symptom of heartburn, continued throughout diagnosis, and still continued throughout my recovery, until I sought medical help for this obsession. I thought that if I just knew a little more, found the right piece of information, I'd just feel better. I'd somehow know that this disease was not going to return, or if it did, I'd somehow be more prepared. I found the right counselor at a Cancer Resource Center, who helped me realize that while it is my job to advocate for myself, I should leave the diagnosis to the doctors. I am not a doctor, and no amount of Google searching is going to give me an M.D. That's why I have a general practitioner, a gastroenterologist, and an oncologist (among others). Google cannot replace those experts. 

My point? Mostly that having information does not an expert make. I have read dozens of peer-reviewed articles (read: reputable/valid/scientific/etc.) on my illness, but it will not change any potential outcome, nor will it make me a doctor. If you aren't feeling so hot, seek medical help, as tempting as Dr. Google might be. My other point? It's OK to admit you aren't coping well. I wasn't coping well, spending hours on end reading about pancreases and crying, no, sobbing, at the thought that my pancreas might be the end of me, even months after the tumor was kicked out. I have kicked my Google habit, at least when it comes to diagnosing what ails me or my family. I still use Google to answer questions, find lesson plans, shop, and end arguments of a trivial nature. I know madness lies in the never-ending search for the final word on my illness. I'll never find that last bit of information that makes me feel better, that assures me my tumor will never return. I don't know that, and neither does Google. Instead, I have redirected my energy and focus to simply living and enjoying this life, and leaving Google to answer only the answerable questions. 

No, I'm not having more kids

I was out to lunch with my twin boys the other day and an older gentleman commented, "Two Boys! Mighty! It's about time you gave them a sister!" To which I laughed and said, "Nah, they're enough." If he had stopped at that, I probably would have forgotten all about his comment, as I find people are generally well-meaning when they try to engage you in conversation. I'm a mom of twins, and I've heard the seemingly standard "social script" of encountering a mom of twins over and over again, from, "Are they twins?" (fair question), to "Do twins run in your family?" (yes, but that's not how I got them), to "Are they natural?" (this question, thankfully, only gets asked once in a blue moon). But he broke this social script when gave his opinion (well-meaning as he was) about the number of children I should have. He went on: "Children are a gift from God and if you were My Wife..." Fill in the blank however you'd like, but he said something a tad inappropriate and at that point I started tuning him out. I have a general rule about trying to make people feel comfortable IRL (in real life- this rule oddly doesn't apply on the Internet), so I handled this well on the outside even though I was like "SHUT UP, SHUT UP, SHUT UP" on the inside (and thankfully my kids are too young to really understand what he said). Thankfully, his lunchtime companion arrived and he turned his attention to his friend instead of telling me to reproduce.

Before discovering I had a giant tumor growing in my pancreas I might have told you I wanted to have another child. Might. It depended heavily on that particular day: if I had slept the night before, if my children were being particularly cute, if there were winds in the east, mist coming in, etc. It wasn't a decision my husband and I had definitively arrived at, as the twins were just shy of two and had tired us out over the past year (ages 12-24 months with twins is HARD). But there were days we would contemplate the idea of another and try to convince ourselves that a singleton baby had to be easier- didn't it? About the time my twins turned 21 months, I started feeling sick. By the 24 month mark, I knew I had something severely wrong in my body. So the more children question was put on hold for diagnosis and medical treatment, which happened to be a solid pseudopapillary neoplasm (SPN) that was evicted by a Whipple procedure.

Fast forward a year and some, and you have me sitting in McDonald's with a perfect stranger telling me to be fruitful and multiply. I didn't need to give this stranger my medical history, but I thought perhaps I should write about his socially inappropriate behavior. Not to tell you to stop making comments about a person's family planning (that should go without saying), but to reflect on how my tumor changed my plans, specifically in regards to the more children question.

My tumor is exceedingly rare, but there are a few things that medical literature seems to agree on. Most people who are unlucky enough to be diagnosed with SPN are female (about 90%) and young (during the reproductive years, so are quite possibly related to female hormones). Though I have been told by my oncologist and my obstetrician that the risk of reoccurance shouldn't interfere with my potential desire to grow my family, I'm not sure I could handle being pregnant and wondering if this will somehow restart the any lingering tumor cells. There shouldn't be any lingering tumor cells, but I'd be lying if I said that hasn't crossed my mind. Additionally, my body was put through the wringer with the Whipple surgery. I lost some essential pieces of my digestive system and malabsorption of nutrients is a real risk for me presently and in the future. Who knew a duodenum was so important? There are a small amount of people who have gone on to have healthy pregnancies and babies after a Whipple surgery, but as of right now, I don't plan on being one of them. 

Being a parent of two boys is an incredible experience. I am sure that joy (and that pain-in-the-ass-ness of having children) would only grow with more children, but we're fine with being a family of four. We are a two-on-two team, man-to-man defense, if you will. We have even gone on an airplane and haven't been totally embarrassed. I share this as MY current stance on the subject, and I in no way want to impose my opinion on anyone else's reproductive plans. You don't want to have kids? Great! You want to have 6? Okay! 

Life is what happens when you're busy making other plans. It's a life for which I am very thankful. If someday I get that maternal urge, I might change my mind (but don't count on it), but in all likelihood, I'll probably just get a puppy. 

Symbolism/The year of the owl

Thanks to fabulous English teachers, my high school American Literature teacher in particular, I have a pretty firm grasp on the purpose of symbolism in literature. I read The Scarlet Letter my junior year of high school, and though I haven´t picked up the book since (nearly 20 years ago- eek!), I still have vivid memories of the seemingly endless discussions of symbolism that accompanied the reading of the book. I remember the behind-the-teacher's-back discussions with friends about whether or not Hawthorne intended all of that darn symbolism or if we were reading too much into his words (yes, this is really what nerdy kids talk about- Mom, you really shouldn't have worried about me). The Great Gatsby is another American lit read chock-full of symbolism, and upon multiple readings as an adult, I have decided that Fitzgerald intended every last bit of symbolism to be interpreted as such in that Great American Novel. I do not intend to write you a literary analysis of either or any text, however.

Symbols are everywhere, from the obvious heart to the less-obvious infinity symbol, to the even-less obvious semi-colon (not used as a punctuation mark). I recall seeing the semi-colon as a non-punctuation symbol for the first time on social media; some people get semi-colon tattoos as a powerful symbol of hope. 

Several weeks ago I revealed that I stepped outside of who I thought I was (before surgery) and got a tattoo. The design presented itself before I even considered getting a tattoo. I saw a picture of something similar to what is now inked on my right shoulder and I thought, "Wow, that needs to be part of me." Only then did I consider getting a tattoo. If you've been reading, you've seen my partial tattoo reveal. Well, here is the whole darn thing:

Yep, I'm a librarian with a book tattoo. This book really comes to life, no? Those pages are really flying! If you know me IRL (in real life) you probably couldn't come up with a more perfect tattoo for me. If you know me IRL, you've probably already seen this. Note the final bird isn't just a nondescript bird silhouette, it's an owl. This is my nod to my Harry Potter Obsession. The owl is Hedwig. Right about now some of you are chanting "Nerd! Nerd! Nerd!" or wondering why I defaced my right arm like so. Well, yes, I'm a nerd. And I happen to like my tattoo, and I don't really care if you don't! It's easily covered up for job interviews and public photo ops! Not that I really care in either of those situations, either!

So, I have a symbol tattooed to my arm. I love it. Would I have considered this 18 months ago before my illness? I don't know, honestly. That's not me anymore. I can't separate out my illness from who I've become. While it's doubtful I'll ever be thankful for having had a giant pancreatic tumor, I appreciate that I'm here and that I have the freedom to choose at least some of my scars (the tattoo, duh). 

When I see it my tattoo, I really do see it as a work of art. It is the one and only scar that I got to choose. (I have at least 6 from my Whipple.) However, there's this fantastic book with a really awesome raven silhouette on the cover...