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."  

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 canva.com

Uncomfortable

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. 

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 http://public-domain.yolasite.com

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. 

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.