Why not me, revisited

Prior to the fall of 2014, I did not feel connected to Steve Jobs in any real way, besides having owned an iPod and an Apple computer or two. The doctor who was given the task of telling me about my pancreatic tumor introduced the diagnosis by telling me what it "probably" wasn't- pancreatic adenocarcinoma. So I said, "Oh, like Patrick Swayze?" Him: "Yes." Me: "Or Steve Jobs?" Him: "Wait just a minute there. Steve Jobs had a neuroendocrine tumor, which can be curable. We think you might have a neuroendocrine tumor." I absorbed the gravity of the potential diagnosis from my knowledge of Steve Jobs, a very public figure who died of pancreatic cancer relatively recently (he died in 2011). While I did not end up having the "Steve Jobs" variety of pancreatic cancer, I did have a Whipple surgery like he did. I did have "a" variety of pancreatic cancer like he did, though it wasn't the same histology (type of tumor tissue). So, I feel a bit of a connection to Steve Jobs.

I came across this Steve jobs quote the other day as I was creating the image for the Julian of Norwich quote ("All shall be well..."): "The people who are crazy enough to think they can change the world are the ones who do."  I was instantly attracted to the quote itself, and then I saw to whom the quote is attributed. Steve Jobs. I had to save this one for later! So I created another image with his fantastic message. 

As I tried to make peace with my trial of an illness, I didn't wonder "Why me?" I decided to question, "Why not me?" Or I tried to, at least. "Why me?" is a pity-seeking question in my opinion. To me, "Why not me?" means that I am like everyone else. I am not more or less deserving of good or bad things. So, I got a tumor. "Why me?" is not a really productive thought to ponder, but "Why not me?" grounded me to the idea that the random and bad things that can happen are just that: random. Maybe you already see how this world view of mine relates to people being crazy enough to believe they can change the world, maybe you don't. Simply: People do make a difference. Why can't I be one of those people? I can! Why not me? Why can't you be one of those people? You can! Why not you? 

All will be well

I'm not a regular churchgoer, though I sometimes attend a local Universal Unitarian Sunday service. I heard these wise words during the "For All Ages" part of a poetry-themed service, though the speaker changed "shall" to "will," probably to make the saying more understandable to the younger folk. The speaker said this was a poem he kept in "his back pocket." While it's not a poem, exactly, it's a good saying to have at the ready. It's a really eloquent (and poetic) way of saying, "It's going to be alright!" I now prefer Julian of Norwich's positive spin to my oft-used, back-pocketed saying, "This too shall pass." 

During my two-week-stay at the surgical telemetry suite, I communicated with my family though text and video chats. I distinctly remember typing to my husband, "This will be behind us soon." All shall be well. 13 of the 14 days I was in the hospital, I held on to the hope that this experience was but a blip, that I would soon return to normal. All would be well. On that one day, Day 10 as it were, I had a Terrible, Horrible, No Good,Very Bad Day. I blogged a bit about that day back in October 2015. On that dark day, I lost sight of the larger picture. I did not reassure myself that all shall be well. I didn't know that saying yet, so maybe that was the problem. 

How do you get through your dark days? 

Leave your mark: part 2

"The thing I realize is that it's not what you take, it's what you leave." 

-Violet, via Jennifer Niven, author of All the Bright Places

It's no secret that I love books. I am a librarian, after all. The past seven years I have been working with elementary school-aged children, and I have loved (almost) every minute of it. However, the time has come for me to move on to something different. I am moving to our district's high school, so my student body and thus reading material has had to change considerably. There's a lot I have to catch up on. The quote above is from Jennifer Niven's book All the Bright Places. If you read this post about making your mark, you know my approach to this goal has changed since my illness. Making my mark is about what I leave, not in the "when I leave this world" sense, but in the "what can I do today to make the world a better place" sense. 

For me, this quest to make the world a better place includes my quest to become a better human. Professionally, I constantly work on improving my craft and bettering my students' educational experiences. Personally, I strive for self improvement. As my career progresses in time and in responsibility/success, the line between my professional self and my personal self not only becomes blurred, but it is starting to disappear entirely. In other words, I present myself honestly and consistently across the different "categories" of my life. What you see is what you get. My colleagues, fellow library trustees, social club friends, etc., all know the same person that my family knows: ME. 

I'm pretty sure I was the same way before surgery, but I was perhaps a bit more guarded than I am now. I'm honestly not sure. I'm the now me, as I ever am (as we all ever are). As time moves me further away from my illness, surgery, and recovery, I reflect less on how this experience has changed me, which is evident by my lack of writing on this particular blog. I spend more time reflecting on how to do better, how to be a better human. If you'll stay with me, I'll continue to write about my quest. Not as a documentation of the things that I do that I perceive as "good," but as a challenge to myself to "put my money where my mouth is." This week I've been all about reading inspirational quotes, so look forward to that- hardy har har. 

And now, one of the most confusing quotes from one of my favorite pieces, Lewis Carroll's Alice in Wonderland: 

"'Be what you would seem to be’–or if you’d like it put more simply–‘Never imagine yourself not to be otherwise than what it might appear to others that what you were or might have been was not otherwise than what you had been would have appeared to them to be otherwise.'" -The Duchess

Being Alive

This past weekend, my husband posed the question, "Aren't you glad we had kids?" Of course! That's an easy question. I'm going to go out on a limb and suggest most parents are mostly happy about their status as parents. In turn, I asked, "Aren't you glad I'm not dead?" A ridiculous exchange, I know, but asking ridiculous questions with (hopefully) obvious answers is part of the fun of (our) marriage. 

Prior to my giant tumor/illness/surgery debacle, "Aren't you glad I'm not dead?" was not part of our repertoire. Again, it should go without saying that people are mostly happy about Being Alive. The status of Being Alive, however, became more important to us after we had to look pancreatic cancer in the face (in the pancreas?). In the diagnosis-limbo month, nearly everything I read was doom-and-gloom. I remember thinking that I might have a life expectancy of an additional six months, according to common pancreatic cancer statistics. Even so, I was hopeful that I did not have adenocarcinoma and had a neuroendocrine tumor instead (possibly benign!). I remember saying to Chris, "Even if it is neuroendocrine cancer, there's a good chance it'll take 5 to 10 years to kill me." I got daggers for eyes in response. The initial and post-surgical biopsies proved much more optimistic, my tumor was exceedingly rare (a good thing in this situation), surgically curable, and unlikely to return. 

I'm about 18 months post-surgery at this point, and super happy about Being Alive. My quality of life is fantastic. Most people who have had the Whipple procedure report similar quality of life to the un-Whippled, according to this study. 

I feel great, though undergoing a pancreaticoduodenectomy (I spelled that right on the first try!), a.k.a. Whipple procedure, has not been without consequences, physical and otherwise. I see an oncologist quarterly for an exam and blood tests, and I have a follow-up CT annually (indefinitely). While not exactly convenient, it's helpful. My surgical changes have rendered me anemic, but the answer is iron pills (no big deal!). My surgical changes have messed a bit with my digestion and given me chronic gastritis (a slightly bigger deal but still manageable). My surgical changes are what helped me remain the the "Being Alive" category, so I take the negative consequences with a pretty positive attitude, hence the "fantastic" quality of life statement. 

I recognize how trite it is to state one's appreciation for Being Alive only after a brush with not Being Alive, but it is my truth. Thanks for reading.

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!