Monday, December 28, 2015

My parenting rules

These little guys turned 3 today!
Birthdays, at least the early ones, are more of a celebration for the parents rather than a celebration for the children. Today, my kids turned 3. We've been to their peers' birthday parties and have been talking up their "Happy Birthday" for weeks. But, today I reflect upon the way the "twin tornadoes" have impacted my life. They turned me into a mother, but also a "mother of multiples," which I suspect is slightly different than parenting singleton children (that's what us mothers of multiples call offspring not born in sets). So, without further ado, here are a few lessons I've learned. 

Children (and everything else that really matters) are washable. Yep, truth. From newborn excrement and spit-up to 2-year-olds who draw all over themselves and sometimes the walls and stick stickers to my floors, it all can be washed. If it can't be washed, say that onsie has had it (throw it out!) or a magic eraser doesn't do the trick on wall art (hasn't happened to me yet), it didn't really matter in the first place. I didn't buy my babies $40 outfits because they'd likely sh!t all over it, and I don't buy my 3-year-olds $40 outfits because they really enjoy avocado (it stains!), play doh, and markers. 

Children are expressive individuals who operate on their own timeline from the day they are born (or sooner!). This is a lesson I attribute to having given birth to two babies at once. I see the insecurities of parents of singletons as they wonder if their child is "on schedule" for milestones such as rolling over, talking, walking, etc. My two never seemed to do the same thing at the same time (except poop). Rather than fret over why one of my boys walked at 11 months and the other one not until closer to 14 months, I just accepted their status as individuals. Not to say I don't experience insecurities about my children's development, because of course I do, but there is a wide range of normal.

Your children will embarrass you, but everyone else's children embarrass their parents, too. (Or they're lying or delusional.) I'm a fairly confident individual, if I do say so myself (or I'm just oblivious), but my kids do cause embarrassment occasionally, and by occasionally, I mean nearly every time we're not at home. They run (because toddlers don't walk), they throw balls inside (because what the hell else are you supposed to do with balls?), they throw tantrums (because they're expressive individuals, see above). I can handle the above embarrassment with a certain amount of grace, sometimes, but the worst is when your child is an asshole to another child (who isn't related to you). Thankfully, since my two came as a pair, they have been used to competition and most often respond to other children with either kindness or indifference, but, sometimes they are a-holes. It happens. We intervene as necessary, but we can't always prevent them from being a-holes. 

"Just wait" should be a phrase banished from discussions about children. My husband is super guilty of this one. I catch him telling his friends newly granted parent-status "just waits" all of the time. If what you are about to say to a fellow parent starts with "just wait," you're probably going to describe a negative aspect of having children. I'm amused by the "Just wait until your kid eats blueberries for the first time" (because it's super gross), but if you say something like "Just wait, your sleepy newborn will soon keep you up all night!" - just shut up. Don't say it. There are a bunch of "just wait" moments in parenting, but focus on the wonderful, especially to those new to the job. I am happy to have this life experience, even if it involves sleepless nights and other unsavory things.  

Strive not to make other people feel bad about their children or themselves. If I had made this a numbered list in order of importance, this rule would sit closer to the top. Before I had kids, I recall a colleague saying that becoming a parent really changed her as a teacher. Not how she interacted with children, but how she interacted with parents. I really, really understand what she meant now, three years into the gig. As an educator, I never, ever want to make parents feel bad about their child. For one, their child is their entire world. They know their child's weaknesses and really want what is best for their child. My own kids are in daycare, and I can honestly say no one there has made me feel bad about them. I know they're in the right place. I really only have experience as a parent up until the age of three, but I can honestly say I deliberately try to lift others up rather than make them feel bad. If you are reading this and I have ever made you feel bad about yourself or your child, I am sorry. I didn't mean to. 

Strive to make your child not feel bad about him or herself. As parents, we all lose our "game face" at times. Sometimes, I get overwhelmed and yell even though I know better. At my school, when the adults lose their "game face," we say that we "leak." So, yep, I leak. But, I really don't want to make my children (or anyone else's children) feel bad about themselves. You won't catch me referring to my child as a "bad boy." I cringe if I hear that kind of language. You might catch me saying "good boy," but know that was a slip of tongue rather than a deliberate choice of words. Am I saying I don't correct behaviors or offer praise? Of course not. Feedback should be immediate and specific, in my professional opinion, "professional" referring to my teacher self rather than my parental self. So instead of saying, "You hit your brother! Bad boy!" say, "We do not hit. That is not nice." I am not saying I've got this parenting thing all figured out, I'm just saying I don't believe in labeling children. Label behaviors. 

So, Happy, Happy Birthday to the guys who took everything I thought I knew and up-ended it. It's been a real trip.
The newly 3-year-olds this morning. 

Wednesday, December 23, 2015

Anniversaries/Life goes on

Not surprisingly, I remember exactly what I was doing a year ago today. Sure, it's the eve of Christmas Eve, and it was only a year ago, but next year I will likely remember this December 23rd as a semi-ordinary Wednesday. 

One year ago today I was in diagnosis limbo, which felt like diagnosis hell, really, if I'm allowed to be dramatically figurative. My husband and I attended our first-ever "baby gender reveal party," unless you call our twins' first detailed ultrasound a "gender reveal party." I cried on the way there. I cried on the way home. I did not allow myself to cry at the party, I put on a happy face and did my best to avoid thinking about my pancreas. No one else knew I was having a hard time, and I was determined to keep it that way. I drank a glass of wine, I ate some pizza. I witnessed the true joy of expectant parents finding out the gender of their baby. I was so, so happy for them. This event was a memorable lesson in "life goes on." This is corny, but every joy I have had the fortune to witness since my tumor has been especially joyful. I don't mean necessarily in a "I'm so glad I'm here to experience this" kind of way, but in a "life is truly incredible" kind of way. 

One year ago was not my first memorable December 23rd, however. Four years prior (five years ago today), I spent part of the day in the emergency room (as a patient), as doctors tried to decide if I was carrying a viable pregnancy or if I was miscarrying. I would have to return on December 25th for blood work that would confirm a miscarriage. I had to make a couple of interesting phone calls that evening, since we hadn't told anyone I was pregnant but that my miscarriage might interrupt holiday plans thus people (parents) must be informed. So I had to announce my likely failed pregnancy on Christmas Eve eve. No fun. I will say that telephoning my father to tell him about my pancreatic tumor was much, much worse, though, but it wasn't on a December 23rd. As mentioned in a previous post, I'm going through a bunch of weird anniversaries this month, some good, some really, really, bad, but all memorable. 

So, if this blog post were a record, "Life Goes On" would be the B-side. I'm not trying to compare myself to The Beatles, by the way, but it's a catchy, meaningful title of a decent song. I suppose I could also steal It's a Wonderful Life as an analogy for this next bit. After my surgery I was hospitalized for 14 days and recovering at home for months. I got a view of my life I suspect most people don't experience at the age of 33. I was most certainly alive, but I got to see what life was like without my active participation. You know what? Life carried on. My husband, family, friends, and daycare providers took over. I remember trying to explain this to my BFF, who summarized this revelation that life goes on as "a really depressing episode of Dr. Who." Yep, it's depressing to think about, but also reassuring. Obviously, I was the most worried about my 2-year-old twins through this whole ordeal. But I learned that they'd be okay. They'd know me, too, through the people who knew me. I'm tearing up as I write this, but it's a reality I tackled head on during my illness and during counseling. 

But, today, on Christmas Eve eve, today's reality was normal things. Life really is incredible. Merry Christmas.

Saturday, December 19, 2015

Different strokes for different folks

I've lost count of the number of times I've been to the doctor over the past year. And by "the doctor" I mean any number of doctors, because I have quite a few. I've definitely been to "the doctor" tens of times this year. Three groups of 10? Five groups of 10? Can you tell I teach small children for a living? 

Earlier this week I made the decision to go to urgent care because my shoulder REALLY hurt. Before I arrived at said decision I was filled with doubt- should I go to the doctor? Can't I handle this on my own? Will I be wasting my time and the doctor's time? I knew I had just hurt myself and I didn't know what to do as I had to go to work and I can no longer take anti-inflammatories (like Advil, thanks to the Whipple). But I was seriously worried about whether or not this was worth the doctor's time and was I just being a wimp. 

I have a really hard time asking for help. I bet nearly everyone reading this would say the same thing. Why is that? Why do we feel the need to handle things on our own, without an expert? Why did I feel my shoulder injury was "silly?" I didn't want to go to the doctor when I had that awful heartburn that led to the diagnosis of my tumor, either. I remember saying it was "just heartburn." Ha. It was just heartburn, but it was being caused by something really huge- a 9.5 cm pancreatic tumor. I suppose I'm glad I went to the doctor then. There were three months between that initial visit and diagnosis, though, and during that three months I became a regular at my primary care doctor's office, trying to figure out what was wrong. At one point the doctor started treating me for depression, thinking maybe my stomach problems were a physical manifestation of depression. I remember later explaining to my would-be-surgeon that I was taking anti-depressants and him telling me "you're not depressed, you have a legitimate physical reason you are sick." He was both right and wrong. I had a legitimate physical reason I was sick, but I was also depressed. I have been diagnosed with "adjustment disorder," which is considered a somewhat temporary depression in response to life events. My definition of adjustment disorder probably isn't super medically accurate, but that's how I understand it. 

It's difficult to ask for help when something is physically wrong, but in my opinion it is even more difficult to ask for help when you can't cope emotionally. A physical problem seems less within your control than an emotional problem. I was raised to believe that emotional problems were a lack of strength or a sign of weakness, something you could think yourself out of. I know some people truly believe that their coping mechanisms and strength of mind are within their control, and that they should be within my control, too. I'm sure people think I'm weak for taking an antidepressant, that I should somehow be able to snap out of my funk with positive thoughts or exercise. A part of me believes that I should be able to snap out of my funk with positive thoughts or exercise, too. My life is pretty great, admittedly. I have a family, a job, a home. But I'm also depressed. And an antidepressant is just one tool in my toolbox of mechanisms to snap out of it. I am not going to feel bad about it or allow someone to shame me for needing medication. 

Each reader will make his/her own conclusions about the legitimacy of my depression, and I suppose that's fine. But the teacher in me feels the need to restate the moral of my story: don't judge. Maybe you can handle more than I can, but don't assign me the label of weak of character. Don't assign others that label, either. I ended up going to two doctors for my shoulder pain, and in the words of my osteopath, I "tweaked" a rotator cuff muscle. Ouch. She assigned me heat, stretches, and steroids. I feel much better today, and there's no shame in me having asked her for help. If you believe in asking for help for physical pain, please believe the same for emotional pain. It might not be what you need, but I'm not you. We all aim to be healthy and happy, and our paths to that aim will be different. And that's okay.

Different strokes for different folks. Some people make funny faces when having their picture taken.

Tuesday, December 15, 2015

Mmm, Barium.

This will be a VERY short post, as I am pressed for time. I don't know what I was thinking, but I scheduled my 1-year-post imaging test for today, 364 days after my first-ever CT scan that revealed my pancreatic tumor. I am not super worried that the tumor has returned, because it is unlikely to have done so, but I won't get the results until my oncology appointment next Tuesday. I scheduled my oncology appointment to be before Christmas on purpose, relying on good news. The thought was if I knew I was OK before Christmas, I would be free to enjoy this holiday season (last Christmas SUCKED). I suppose this was going to be a hard week anyways, approaching all sorts of tough "anniversaries," so might as well pile it on. My husband and I have a history of dramatic holidays. Last year we were not-so-patiently waiting for my biopsy, three years ago awaiting the birth of our twins (this was crazy good drama, of course), and five years ago I miscarried the day after Christmas, after having spent part of the 23rd and the 25th in the ER. So, fingers crossed for a medically uneventful holiday season. If this last year has proven anything, I can handle the unexpected, ungracefully, but I can handle it. Fingers crossed for a "normal" CT.

Saturday, November 28, 2015

Initial diagnosis

To say I was a bit nervous between December 16th, 2014 and January 15th, 2015 is a gross understatement. I was more than a bit nervous; I was a wreck and downright miserable. "Acceptance" was not a stage of grief I met during that long, long, long month. When I learned that there was something really wrong going on in my body that might kill me (but "probably" wouldn't), my reaction was not graceful or admirable. I kept it together on the outside for most of those days, but on the inside, I was crumbling. I wondered how some people seemed to face the possibility of death by long-term illness with strength. Actual named diagnosis on January 15th brought much relief, thankfully. No one wants a giant tumor in their pancreas, but the kind of tumor I had was the "good" one. It was surgically curable. I was going to be okay. But the month of living both with and without pancreatic cancer (a fun mental experiment? NOT!) was terrible.

December 16, 2014, I had a CT scan to basically rule out an overtly physical cause to my heartburn, nausea, and anxiety. Within an hour of completing the CT scan, I got a phone call from the doctor's office. General rule: results from a CT scan relayed within an hour must not be good or "normal" results. I was expecting a couple of days until the "you're okay" phone call came.  The results of the CT scan as reported by my doctor said that I had "changes to the pancreas, unlikely to be pancreatic cancer" and that I needed to see both a gastroenterologist and a surgeon within a week. A nurse had delivered the news and could not answer any of my questions; she only could relay the message from the doctor. This was in the evening, so any questions would have to wait until morning. In the absence of a medical professional, I turned to the Internet. While I know that was an absolutely terrible idea, I was seeking reasonable, benign explanations for "changes to the pancreas." Warning: there really aren't any reasonable, benign explanations for "changes to the pancreas." There are relatively benign explanations, but nothing common or reasonable. If you've got something wrong with the looks of your pancreas, you're probably not going to be getting good news. Sure, you could have a benign cyst, but anything Dr. Google could tell you would do nothing but incite terror and dread. Needless to say, I love using clichéed transitions in my writing. I do. But, really, needless to say, I did not sleep that Tuesday night. 

If you know me IRL (in real life), you probably know I am a skeptic and a realist. I believe there is a reasonable explanation for everything and I do not believe in fate or karma. I believe in the hard sciences and statistics. I am a pragmatist through-and-through. You will not find me using clichéed expressions such as "Everything happens for a reason" or "Every cloud has a silver lining" or even "God only gives you what you can handle" (in which case, why the hell did God think I could handle a giant pancreatic tumor?). I know, I know, I'm no fun. However, the stars aligned in such a way I have been forced to re-think my stance on "everything happens for a reason." I still don't believe that, ultimately, but the set of coincidences after diagnosis gave me pause. 

I met a gastroenterologist (digestive system doctor) the day after my CT scan. I would come to appreciate him for his kindness and attention in addition to his expertise. It was a Wednesday (this becomes a relevant coincidence). The girl who took my vitals in the exam room attempted to be reassuring and said something like, "It might not be so bad, our doctors see these things all the time." Boy, was she wrong. Dr. Amar Bansal came in shortly thereafter, sat down and explained what the radiologists saw on the CT in his soothing doctor voice. I don't remember what he said verbatim, or even in what order things were said, but certain statements stood out. Like nearly everyone I encounter, he asked how I knew something was wrong. Heartburn. There were other obvious symptoms as well, but I didn't realize it at the time. Dr. Bansal went on to tell me out of 1000 CT scans on someone my age, 999 would be normal with the exception of a few ovarian cysts. He would not have ordered a CT scan simply because I had heartburn. This is the first coincidence that stands out in my mind. The doctor who ordered the CT wasn't even my regular doctor, and the specialist wouldn't have even ordered a CT based on my symptoms. When I saw the only doctor available that Thursday back in October, he recognized my symptoms as unusual (the heartburn was constant and unrelated to what I ate) and ordered a CT. Why I waited 2+ months to get a CT is a long story by itself, but this detail turned out to be another happy coincidence (or blessing, if you prefer). Dr. Bansal described my tumor as it appeared on CT imaging (sizable, but no evidence of spread), and he first described adenocarcinoma of the pancreas and why he believed I did not have this deadly form of pancreatic cancer. He explained that the radiologist believed I had a pancreatic neuroendocrine tumor or PNET, the "Steve Jobs" kind of pancreatic cancer. It might be benign or cancerous, but if it's a cancer it's slow-growing. Adenocarcinoma, the Patrick Swayze kind of pancreatic cancer, is aggressive and infiltrative (it spreads to other organs quickly). This is distinctly different from the kind of tumor I likely had, the PNET. This was good news, apparently. I would almost certainly need surgery and I should definitely keep my scheduled appointment with my surgeon the next day. As he walked me out of the office to schedule my endoscopy for that Friday, I asked him nervously, "Do you think this is going to kill me?" And he kindly replied, "No, I don't. You might need chemo or radiation after surgery, but I don't think this will kill you." He also told me to stay off the Internet and only look at the Johns Hopkins and Mayo Clinic's information about PNETs. I left feeling a little better. A little. 

By the grace of coincidence, I had an intake appointment scheduled with psychiatry later that afternoon. It was actually a reschedule. The nurse practitioner came to get me a little later than my appointment time; she was reading through my medical charts. This is one advantage to going to a large medical group, no need to explain what was supposedly going on in my pancreas, she already knew. I sat there and cried and talked for the entire 40 minutes I was allotted and left with a prescription for a sleeping pill. I reassured her I would get myself together enough to drive myself home. 

At some point that evening, the surgeon I had with whom I had a scheduled appointment the next day called to cancel my surgical consultation. He did not do that kind of surgery (which I would later find out is called a pancreaticoduodenectomy, or a Whipple procedure) and I should call Dr. Fabio Sbrana at Lutheran General Hospital. After a sleeping-pill-induced and much-needed night's sleep, I called Dr. Sbrana's office that Thursday morning and saw him a few hours later. My next opportunity to see him for surgical consult would have been January 8th, 3 weeks later. To this day, I am so thankful that he had that appointment slot. I didn't realize until much later than Dr. Sbrana only saw patients in his office on Thursdays. I happened to call on a Thursday morning, another happy coincidence. This time I was not alone in the exam room. My husband, probably as freaked out as I was, came with me. Dr. Sbrana came in promptly and in his Italian accent told me that this is something "very strange" and "nearly impossible", and that is a "good thing". The more typical pancreatic tumors are quickly deadly. He said I would have a nasty, nasty surgery, but that I'd be fine. And you know what? I believed him. He turned out to be right. I did have a nasty, nasty surgery, and I'm not dead. He didn't even say I had a PNET. That day I developed a crush on my surgeon. He is pretty good looking, sure, but he was going to save my life. Before we left, he personally spoke to the gastroenterologist who specializes in the pancreas about me over the phone and I had an appointment with that doctor the following Monday, December 22. My husband and I left feeling more confident about my prognosis and we went out to lunch and I didn't cry on the way home (I had spent a fair portion of the last 36 hours in tears). The next day, Friday December 19th, I had an uneventful endoscopy. Dr. Bansal stuck a camera down my throat and saw that the tumor (or whatever it was) was pushing on the exit of my stomach, the duodenum, and that was causing my heartburn. The tumor had not grown unto my stomach lining. More good news. There was still no evidence of spread. I got through the next 26 days until actual diagnosis somehow. It was a very long 26 days that included Christmas, my boys' birthday, and New Year's, so of course lots of gatherings and lots of playing it cool. It was exhausting. Actual diagnosis occurred on January 15th, 2015. It was not a PNET, it was a psedupapillary neoplasm. This was good news. There's a lot more to be said about my life between December 16th and January 15th, but I'm going to save that for another post or two. For now, I will leave you with a Ralph Waldo Emerson quote: "Bad times have a scientific value. These are occasions a good learner would not miss."  

Wednesday, November 25, 2015

Show up (and bring food)

I'm not super into giving people advice unless specifically asked for it. You won't find me telling other moms how I somehow have mastered this parenting thing and how my kids are perfect or how I did this or that this way or that way, and this way or that way is obviously the right way to do things. But, here's my unsolicited advice to pretty much anyone out there: Show up (and bring food). In my opinion, that advice applies in very nearly any situation. 

The eve of Thanksgiving (today) is a fantastic time to write about showing up and bringing food. Thanksgiving is a great time to show up to an occasion with something edible (or drinkable if that's more your style). Bringing food to a joyful social gathering is an obvious application to my aforementioned piece of advice. 

I had many, many visitors during my hospital stay. So many, in fact, that I have had people tell me months later that they came to visit me in the hospital and I didn't even remember! Again, another obvious situation in which showing up is important. If someone you love is stuck in the hospital, show up (though probably don't bring food). 

Thankfully, no one brought me food in the hospital (I didn't eat anything for 10+ days), but people brought my husband and my sons food at home. The food continued after I got home. People in our lives showed up and brought us food. Hot food, cold food, frozen to-be-eaten-later food, fast food, home-cooked food. The non-cooks and distant folks sent us gift cards for food! It was amazingly wonderful that our meals were taken care of. 

That question you want to ask when someone is hurting: "How can I help?" Instead of asking, show up and bring food. Happy Thanksgiving, all. I hope all of your showing up and bringing food is in joy tomorrow. Don't forget to show up and bring food for the less obvious food/presence occasions, too! 

Image created with

Friday, November 20, 2015


I've noticed that some people are uncomfortable when I talk about my illness. I do not intend to make people uncomfortable. At this time in my life, surviving whatever you want to call my tumor/mass/neoplasm/sort of cancer is a big part of my life. Thankfully, because of counseling, proper medication, and feeling relatively normal, my illness no longer consumes my thoughts. But I can't ignore it. When I talk about it, I am not seeking sympathy. But when the topic of the complex origins of cancer comes up in conversation, I can't help but add my personal experience. Isn't that what conversation is? It is my hope that as time distances me from my surgery and my follow up imaging tests remain clear, this will become more a part of my past than a part of my being. I really, truly had hoped that once the tumor was gone and the surgical wounds had healed, I would be over and done with it. That's most likely the case, I'm most likely done with this pseudopapillary tumor. The doctors say it "probably" won't come back. Probably. So while I'm very probably done with pancreatic tumors of unknown origin, I'll never be completely back to how I was (body and mind) before surgery. 

Once I learned I'd be an oncology patient for the rest of my life, the wheels of negative thought started turning. Oncologists work with cancer patients. Because of the lack of knowledge about this tumor and its unpredictability, I will forever be followed medically. Better safe than sorry, I guess. Especially because if it comes back, surgery is again an option, unlike what I call "real" pancreatic cancer (adenocarcinoma of the pancreas). Surgery is only an option in about 15-20% of pancreatic adenocarcinoma patients in the first place, and a second surgery is nearly unheard of. I am acutely aware that I have it better than most oncology patients. I think my oncologist likes seeing me because he periodically gets to give me good news and odds are our routine of him saying "your cat scan was clear" will continue indefinitely, or at least until I have to get a new oncologist for whatever reason (relocation of him or me or his retirement, basically). In the unlikely event that the tumor does come back locally or as a metastasis, I will deal with it then, or at least that's what I tell myself. Living with that knowledge, however, has taken a toll on my psyche. In an earlier post I referenced my half-written blog post about my depression, and since my depression/anxiety make me uncomfortable, I'll tack in on to this post. Here it is:

I am a high-functioning depressed person. At least that's what my cancer counselor (licensed therapist) told me. I have an "adjustment disorder" or "situational depression", something in my life caused my depression. When she told me I was a high-functioning depressive, I must have given her a wacky look because she went on to explain that I was still able to take care of things in my life that needed care. I went to work every day. I made dinner. My kids' needs were met daily. I was/am able to go on like normal, but only sort of. When my depression is getting the best of me, it is so difficult to get pleasure from things I normally enjoy. That doesn't sound so terrible, but add a moderate dose of anxiety and my rational self disappears the by way of the white rabbit. I get stuck in a hole of obsessive "what ifs" and "if onlys".

I sought help when the need for knowledge about my tumor turned into an obsession that stopped me from functioning normally. This was uncomfortable for me. I was raised to think seeking such help was a sign of weakness (I know you're reading this, parents, but that's my perception.). I brushed aside my discomfort and went to my medical practice's mental health office. I left with a referral to Living Well Cancer Resource Center. It would be a couple of months before I worked up the courage to call Living Well, but I eventually did and saw a counselor who helped me develop strategies to get out of the rabbit hole. This was my first experience with counseling, and I would not hesitate to go back if I am in need of a "tune up" or to recommend counseling to someone who is having a rough time. 

I have said this before, but I am not seeking sympathy when I talk about my medical woes; I am coping. I am not comparing my awful situation to your awful situation or to universally awful situations. I know it's really not that bad in the "grand scheme" of things and I do believe I have the gift of perspective. It took a whole lot of uncomfortable to arrive at my new normal, physically and mentally. I'm happy to be here and "normal," though I still need help from time to time. I truly appreciate my health, my body, and being alive. Talking about our experiences is not always comfortable, and I'm not going to apologize for that. I wish you all healthy bodies and minds, and the ability to seek help when you need it. Cheers. 

I couldn't think of a relevant photo, so here's a serene picture of  Calypso the sea turtle at Baltimore's National Aquarium (photo credit: me). Calypso had one of her flippers amputated, which was probably uncomfortable. Calypso was about 2 years old at the time. 15 years and 500 pounds later, Calypso is thriving despite having only three flippers. I think there's a lesson to be learned here, but I will leave it to the reader to identify the moral and remain true to my teacher self. 

Monday, November 16, 2015

Who are you?

I'd guess most of the people who read Things Left Out know me IRL (In Real Life). However, Google Blogger gives me lovely statistics about my readership, and there are definitely readers who I have not met IRL or virtually on social media. 

First things first, how did you read the title of my this blog post, "Who are you?" In my head, the voice of Alice in Wonderland's hookah-smoking caterpillar (according to Disney) poses the simple yet deep question about my perception of my being. I am an elementary school librarian, champion of public education and literacy. Occupational hazard: I experience much of life though book references. Granted, the voice of Disney's version of Alice's caterpillar popped into my head, but I have read (and loved) Carroll's original. 

Alice in wonderland illustration by John Tenniel Find public domain images at
I am in my seventh year as a school librarian and tenth year as a public school educator. I taught middle school science for the first three years of my career. After ten years as an educator, who I am and what I do are no longer easily separated. At a social event last week I was conversing with an old friend about his experience as a mentor for a school-aged child and I pulled a relevant book OUT OF MY PURSE and gave it to him. I carry books around in my purse. As of last night, I carry books around in my purse and give them away. I was thrilled to have the right book at the right time. It was poetic, really. I hope to do it again soon. If you're wondering, the book was Diary of a Wimpy Kid by Jeff Kinney. I'm late to the Wimpy Kid party, but they really are fantastically engaging books.

Another defining characteristic and occupational hazard: I also attempt to solve poor social behaviors and parenting problems with books. Case in point: Chugga Chugga Poo Poo! Time to potty train? Love of trains? There's a book for that! I could go on, but I'll spare you. If you need a book recommendation, let me know!

As I previously stated, I've been in the "business" of public education for ten years. I have no plans to leave my profession and am ever-seeking opportunities to improve as an educator and as a librarian. One of my professional goals is to form a partnership with the public libraries to better serve my students and families. There are may ways I am accomplishing this community partnership, but last fall (before my illness) I decided to run for public library board. I was elected, and I now sit on the Messenger Public Library board to not only perform the public service of library trustee, but to help further the connection between the local libraries and the school district. I am grateful for my elected position. If you are interested, here's my candidate profile from the Daily Herald.

I've mentioned this before: I am a mom of twin boys. They are about to turn three-years-old. "Who are you?" I am a mother. My boys are my first priority and the best parts of my life. They, too, suffer the consequences of my librarianship. One of my favorite hashtags to use on social media is #librarianmom, though #teachermom works really well in context. Yesterday my son showed me a block of cheese he had swiped from the fridge and said "I found a rectangle!" I excitedly replied: "YES! You found a rectangular prism!" Nitpicky, yes, but accurate. My kids will go to kindergarten minding their p's and q's, but also knowing the general difference between monkeys and apes (monkeys have tails, apes do not). I find the development of my children utterly fascinating, and I could go on about them for a length more suited to a book than a blog.  

This is one of those fortunately/unfortunately things, but I can no longer honestly answer the "Who are you?" question without considering my illness, diagnosis, surgery, and recovery. Unfortunately there are lasting physical and mental effects after undergoing such an ordeal. I have medication to handle most of the physical stuff and as long as I watch what I eat, I feel pretty good most of the time. Normal, even. A new normal, but a totally livable normal. The mental stuff is a little harder to deal with at times. I have medication to help me with that, too. I have a half-written blog post about my depression and anxiety. I'll get around to writing the other half of it someday. The tumor is gone, and it "probably" won't come back, but it could. Living with that knowledge has been a struggle. The changes of my body and mind aren't all negative, though. That's where "fortunately" comes in. Fortunately, I no longer have a tumor. Fortunately, I have learned to let go of things that don't really matter. Fortunately, I have become unapologetic about my views and actions to make my world (and the wider concept of "the world") a better place, though this change may have come with age and experience rather than as a result of my "sort of" cancer. I'm not specifically referring to politics, either. By my estimation, pulling the right book at the right time out of my purse and giving it away has the potential to improve the world, if only a little bit. This small action accurately defines who I am, or who I think I am, anyway. If the people in my world see me as the enthusiastic (if not a little nerdy) librarian who talks too much about books (or pulls them out of her purse at social events), I'm being true to myself, because that's who I want to be. 

Tuesday, November 10, 2015

The importance of the village (part 1)

My twins turned 2 during the "limbo" phase of my diagnosis. We knew there was something really wrong- but we didn't know what exactly. It "probably" wasn't an aggressive cancer, but until it was biopsied, we really didn't know. That was a tortuous month. We had a small birthday party for them with close friends and family as guests. I'm so glad we decided to have a party. George and MJ (the twins) had a blast and they knew the party was in their honor. Two short weeks later I would be preparing for surgery and an undetermined length of a hospital stay. 
I didn't need to do a lot to prepare my body for surgery, besides following a liquid diet the day before and not eating or drinking before midnight. Mentally, I was ready to get this tumor out of my body. My surgeon told me this was an awful, nasty surgery with a long recovery, but I knew I could handle it. I wasn't worried about surviving surgery because of my otherwise good health and relatively young body (I'm about half the age of a more typical whipple surgery recipient). My kids were too young to understand what was going on, so to prepare them we took them to get haircuts because that's a two-parent job! 

An unrelated decision we had to make about their daily care a couple of months prior turned out to be one of the best ways to prepare them for my absence. Daycare. Up until they turned 2, we were lucky enough to have my mother as their caregiver while we were at work. She came to our house daily and our children benefited from their "Grammy Nanny." She made a lot of sacrifices to help us out, and we are grateful. But it was time for her to return to work and for us to make new childcare arrangements. 

Daycare. Some moms shudder at the word, and I admit I used to be uncomfortable with the idea. If you are a mom who participates in social media, you have probably come across a blog article that either sings the praises of paid childcare workers or shuns the very idea of leaving your child in the hands of "strangers." Prior to sending my kids to daycare, I assumed neither position. You do what you have to do, and sometimes that includes daycare. Period. Now that I send my kids to daycare, I sing the praises of the wonderful people who care for my children in my absence. 

In the childcare "Mommy Wars" the topic of daycare is inevitably linked to the topic of working mothers versus stay at home mothers, or SAHMs, because we seem to need acronyms for everything. I work because I choose to (and I like eating food and living in a house), and I will not apologize for that. It is the best for me and the best for my family. Daycare is a necessity, and we chose a daycare facility rather than a nanny or a smaller home daycare for a multitude of reasons, but those reasons don't belong in this blog post.

Something most people hopefully will never have to consider is the necessity of daycare because you are physically unable to care for your children because of a lengthy, serious illness. The timing of sending my kids to a daycare facility could not have been more perfect. I spent two weeks in the hospital and three months at home recovering, and for the better part of those three months I was unable to give my children what they needed on a daily basis, by myself anyway. My kids started daycare the first week of January, and I had surgery on the 20th. Sure, there were tears that first week of newness, but by the time my surgery rolled around it was part of their daily routine. In fact, my parents came and took my kids to daycare (and picked them up) the day of my surgery. I wanted them to have a sense of normalcy even though things in their life definitely were not normal. I was comfortable with that decision at the time, and in hindsight, it really was best in a not-so-ideal situation. 

When raising children, the old adage "it takes a village" is relevant. It does take a village. My village happens to include daycare. Of course no one loves your children like you do, but I know my children are well-cared for and loved in my absence. The daycare naysayers wouldn't believe that, but I certainly do. I am a teacher, and I do care fiercely about my students. I believe the same of the wonderful people who taught my children to wash their hands, eat with a fork, and pedal a tricycle (among other things, of course). Thankfully the daycare we chose assumes a philosophy closely aligned to our parenting philosophy, but that was not an accident. We CHOSE this facility. Now, nearly a year later, my kids will now occasionally cry when I come to pick them up, especially if I am too early. They don't want to miss their outdoor/gym play and their time in "Kathy's Room." They get upset if they miss "school" because they are sick. 

Our village includes many people, and I learned how broad my village really is during the length of my illness. I am so thankful for the individuals who care for my children during the day while I am at work. My husband and I would have had a very difficult time during my illness without them. I believe my children would have had a more difficult time without the love and support of the daycare "school" and teachers. The timing of this transition could not have been better. It's unfortunate I had to learn this very important lesson because of a very large tumor, but I am thankful. I understand that people do not take their childcare decisions lightly, and I also understand it is not the job of others to judge their decisions. So I cringe whenever I see an article that calls working moms "selfish" to leave their child to the care of others, not specifically because I am a working mom, but because sometimes we, as parents, need help from our village. Sometimes, that village includes daycare. No apologies.

Monday, October 12, 2015

Tell me all your thoughts on god

I recently started attending church after a very long hiatus. It seems cliche, but when I was faced with the possibility that my time here alive on Earth may be cut short by cancer (turns out I only "sort of" had cancer), I started thinking about my spiritual self again. Since I wouldn't describe myself as Christian any more than I would describe myself as Muslim, Jewish, or Buddhist, I didn't really know where to turn. I prayed just in case someone was listening, though I generally believe prayer is a form of positive self-talk that offers comfort and strength. Several months after surgery, my body was healing, but my mental state was deteriorating. Caught in a downward spiral of "what ifs," I made an appointment with the psychiatry department at my medical group. The lovely nurse practitioner whom I had seen once before on the day they told me I had a large pancreatic tumor talked to me for 20 minutes and referred me to the Living Well Cancer Resource Center. I expressed my concern that I didn't "deserve" their services as I didn't really have cancer. She looked right at me and said, "It counts." It took another month or so for me to work up the courage to call Living Well, but I did eventually call and started receiving individual counseling. The counselor didn't turn me away of course, so I saw her several times. She asked me about religion, I told her I had none. At a later session, I told her I was contemplating going to a Unitarian Universalist service. In the true fashion of a psychologist, she asked me how I felt about that. I told her something like, "Well, I thought I'd give it a try. I don't have to go back." She affirmed. So I eventually worked up the courage to go to a Sunday service. I attended on a day they had a member of the congregation give the sermon rather than a church leader and the sermon was titled "Back to School." The main ideas of the message I left with were choosing kindness, service to others, and self-improvement. I felt like he was speaking directly to me. 

Most people of faith that I know would identify as some kind of Christian, so I am taking a leap and assuming most of my readers cannot define what a Universal Unitarian is. Frankly, neither can I (yet). But here is a definition lifted straight off of their website:

As Unitarian Universalists, we are part of a long tradition of religious freedom, theological inclusiveness, and community acceptance, and we cherish our diversities of race, age, ability, politics, theology, sexual orientation, culture and ethnicity.

Seems like a good match for me. I was raised watching Mister Rogers and internalized the idea that "You are special." I don't mean me, specifically, but each and every one of you are a worthy human being. Any religion that preaches self-righteousness and exclusivity is not for me. Going back twenty years or so to my "Statement of Faith" I gave at my confirmation, I said before the congregation something like: "Faith is what you make it; it is individual. No one religion can be right and not every religion can be wrong." I'm paraphrasing here, as I didn't actually keep that piece of loose-leaf notebook paper, and I surely did not properly use the semi-colon at the age of 13. My Pastor and the congregation accepted my statement of faith and I was confirmed in the United Church of Christ faith. They apparently were an accepting bunch and let me in despite my lack of commitment to their particular brand of Christianity or Christianity in general. The Pastor was a jovial man who once told me that he saw God everywhere, even in a package of Oreos. I always felt at home there. My family moved shortly thereafter and I never did find another house of worship with which I identified. 

I have been back to service several times and I have always walked away wanting to be a better person. If that isn't the right reason for going to church, I don't know what is. Some of you don't understand, and that's okay. Some of you think I'm wrong, and that's okay, too. I stepped out of my comfort zone when I stepped into service that one August Sunday. I reminded myself that I didn't have to go back. I did go back. Several Sundays in, I still tell myself I don't have to go back. But I probably will.

Thursday, October 8, 2015


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. 

Sunday, October 4, 2015

The people that you meet

Day 10 in the hospital was a Terrible, Horrible, No Good, Very Bad Day. I have since referred to Day 10 as one of the worst days of my life. Anyone who saw me that day noticed that I looked Terrible and Horrible, and that I was not myself. I had just pulled out my own NG tube (an awful thing that goes up your nose and down your throat) in a fit of extreme discomfort and effort to have some control over my body, upsetting my nurses and my family. I nervously awaited my morning visit from my surgeon, but to my surprise, he was unfazed. My kids came and saw me for the first time since my surgery that day, which was wonderful, but I'm glad the then newly 2-year-olds will not remember their visit. However, I will always remember that dark day. This is both a fortunate and an unfortunate thing. Why remembering my Very Bad Day is unfortunate is obvious. The first few days in the hospital are hazy memories, which is probably a good thing, but Day 10 is crystal clear. Fortunately, my Terrible Day 10 led me to people who helped my mind find a path towards recovery. 

I have yet to knowingly meet someone who has undergone my type of surgery face-to-face. We're a rare bunch. I don't believe I have mentioned the type of surgery I had. I had a pancreaticduodenectomy, more commonly referred to as a Whipple procedure. Overly simplified, I had parts of my digestive system removed (including the tumor, obviously), and then the remaining organs were rerouted and reconnected. Before I had the surgery, I was warned that recovery could take 6-12 months. I share these details to illustrate why meeting someone who has "been there" is so essential to healing the mind. On or around my Very Bad Day, or Day 10, a kind woman I met on a Facebook "Whipple Warriors" group CALLED THE NURSES' STATION AT THE HOSPITAL on my behalf and told the nurse who answered the phone a few ways to help me out my darkness. In this small act of kindness, a virtual stranger became a friend. She talked to me on Facebook and expressed that if she lived closer (she lives several hours away) she would come and visit me. She empathized. She listened. She knew the pain I was in. Eight months later, I know she is following my blog because she comments on almost every post. Knowing I was not alone was enlightening. She is not the only person I met as my body healed, but she was the first Whipple Warrior to reach out to me.

In the coming weeks I would meet more people who I will never forget and hope to meet in person someday. I met another educator who underwent the Whipple a week before I did for noncancerous cysts. Being a week ahead of me, he gave me small glimpses of hope that soon I too would be able to eat a bagel with cheddar cheese for breakfast. We bonded over our pain and darkness, but also over our recovery. We shared a common addiction to isotonic beverages (he liked Vitamin Water, I had to switch to Gatorade when I puked Vitamin Water one too many times). 

Amazingly, I met a wonderful woman who had had the same type of "sort of" cancer as I did, but her tumor required a distal pancreatectomy (the other half of her pancreas and spleen were removed). Hers was removed a few days prior to mine. I say "amazingly" because this tumor is so especially rare. There are about four thousand members of the "Whipple Warriors" Facebook group (still an elite bunch), but there are only 69 members of my tumor-specific Facebook group, many of whom do not live in an English-speaking country. Let that sink in. In the 1.5 billion Facebook users, only 69 of us have found the Frantz/Pseudopapillary tumor group. There are more, to be sure, but we are a really, really rare bunch. It's entirely possible that she and I were the only people in the world that had this tumor removed in January 2015. She lives in Miami and I can't be more thankful for our virtual connection. We will meet someday, hopefully with our families (she also has two young children), and we will cry. At least I will. In the mean time, I will text her before every follow up CT scan and oncology appointment. She gets it. I'm not saying you don't get it, but she gets it on such a personal level that I feel less alone. 

I am so thankful for these three individuals, though they only scratch the surface of support my family and I have received over the past year. They led me out of my 
Terrible, Horrible, No Good, Very Bad Days and are still there for the days I veer off path. Those days are few and far between, but I know I will always have those days. We all do, no matter the state of our pancreases. 

Thankfully, there are no pictures of me in the hospital. This is the first picture I shared after my surgery. It was in March following my January "Whipple." It was also my first walk outside. My dog Lola was pleased, as was I. 

Saturday, October 3, 2015

Why (not) me?

When the doctor told me I had a sizable tumor in my pancreas, I asked him the few questions that came to mind. As I was walking out of the door of the exam room, I asked him, "Do you think this is going to kill me?" He calmly answered, "No, I don't think so. You might need chemo or radiation, but I think you are going to be okay." To date, so far, so good. No chemo, no radiation, not dead. But before I thought to even ask that question, I asked him "Why?" He informed me that in the absence of a strong family history, there is no good answer to that question. There is nothing I did to cause the tumor and there is nothing I could have done to prevent the tumor. 

Over the next several days and months, I would occasionally find myself going down the rabbit hole of the "Why me?" question. Heck, my brain still goes there on occasion, even though it knows better. In life, things happen. Accidents happen, tragedies occur, genes mutate, and tumors grow. Perhaps a better question is "Why not me?" The answer: no reason. There is both some comfort and some terror in the notion that anything can happen to anyone for no particular reason. "Why me?" sounds a bit whiny and implies that other people might deserve your fate more than you did. "Why not me?" acknowledges the random and awful as random and awful. 

The question "Why not me?"can also address the good things. It is a question to ask yourself when you are trying something new, different, or unfamiliar. It's a question I asked myself when I decided to share my story via self publication on the Internet. I wasn't sure people would want to read what I had to say, but people do sometimes want to read what others have to say, so why not me? 

I can't stress enough that I am not writing to compare my awful to your awful. I am not writing to minimize the experiences of others. I am not writing to get sympathy. I am acutely aware that my random awful could have been so much worse. A large portion of people who undergo the same surgery I did are fighting "real" pancreatic cancer (not my "sort of" cancer). I do know how lucky I am. Since I am just a lowly blogger and not a pop star, I am going to pull out a Pitbull quote to (w)rap this up: "everyday above ground is a great day, remember that." 

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."