Saturday, March 26, 2016
Snow
Wednesday, March 23, 2016
Things not written/Karma
Oh, what the heck. I'll share my diatribe on karma here, in the likely event I never go back to that piece:
Karma is crap. Think before you mention karma to someone who has greatly suffered. To tell someone they deserve a hardship because of something they have or have not done is an awful thing to say. No one deserves a giant pancreatic tumor. No one deserves cancer. No one deserves to have their life cut short my declining health or a tragic accident. Does the speeding jerk who cut you off deserve to get pulled over? Sure. But call that consequences, don't call it karma. To be clear, no one directly said I deserved a tumor. But to preach "karma" is an insult.
So, that's how I feel about karma. (And that's a conclusion a fifth grader would write. At least I didn't open with a question. "Did you know...")
Now that I've established my feelings on karma and that I don't always finish what I start (ahem, blog posts), what about getting what you deserve? Well, that post was crap. Sometimes you do get what you deserve, but like I said, I attribute that to consequences, not karma. My inner teacher voice is telling me to point out that consequences are both positive and negative. But I also need to point out that in this example, I am attaching consequences to conscious choices.
Bad stuff happens to people. Period. Do not try to justify a tragedy by thinking it was somehow deserved. You will not convince me that I got my tumor because I "deserved" it, unless you somehow weave the words "gene mutation" into your explanation, like "The mutated gene thought you deserved a pancreatic tumor." Life handed me lemons (actually, the tumor was more of the size of a single small orange). So, I've made the choice to make lemonade. I'm still working out the recipe for my lemonade, but it somewhat includes writing clichéd metaphors whilst sharing my life experiences. Someday, I hope to reach more people and use my experiences for the greater good, like promoting pancreatic cancer awareness (which hopefully leads to more funding which hopefully leads to medical advances). I will keep trying to make lemonade, as life does not discriminate when it comes to handing out lemons.
Saturday, March 5, 2016
Surgical changes: Those who can, teach.
I've already established that I'm not the same person I was pre-illness. To bring new readers up to speed, I recently had major, major surgery to remove a "low grade malignancy" from my pancreas (a large portion of my pancreas got the boot in addition to other digestive organs most of you still house in your bodies). I've dubbed my illness a "sort-of cancer," as it wasn't quite benign, though in the world of pancreatic cancers I got the super rare, relatively "good" and curable variety. My one year follow-up CT scan revealed "surgical changes" (duh), and nothing more tumor-related.
I remember 48-hour-post-discharge appointment with my surgeon like it was last week, never mind that it was actually 13 months ago. My surgeon, the wonderful, kind, talented, and handsome Dr. Fabio Sbrana told me and my husband that the day he ordered my discharge papers (a Tuesday), he had told the nurses that I'd be back, meaning, he didn't think I was physically ready to go home and would be re-admitted, but he let me go because I was BEGGING to end my two-week stay at hotel "Surgical Telemetry Unit." But, that Thursday I walked, upright, mind you, into his office probably looking like hell, but looking ten times better than I had in the hospital. My determination to be home and healing kept me at home and healing. At this follow-up visit my main questions were about bile (if you're curious, ask, but I will spare the non-curious the green details), what I could eat, and my physical restrictions. I could eat pretty much anything I could stomach, and I didn't have any physical restrictions. Yes, I could pick up my giant two-year-olds (hallelujah!) a mere 16 days after my 11-hour-surgery, and, in fact, I could go running! I laughed, as I'm not a runner, but thanks, doc, for those "surgical changes" that turned me into a runner. Joking aside, his point was I couldn't do any physical damage to my surgery with physical activity, and in order to heal, I needed physical activity. What wasn't mentioned were the emotional repercussions of undergoing such a traumatic event. I've mentioned my resulting depression and anxiety, but that's well-managed. I've explored how this experience has allowed me to admit my like of Phil Collins, Lorna Doones, and tattoos. Those who see me everyday (who knew me before my illness) have noticed yet another change, the weakening of my "filter." I'll joke and say Dr. Sbrana removed my social filter along with half my pancreas (and somehow made me a runner), but this change is all emotional resulting from the physical.
When I publicly admitted I got a tattoo (gasp!), I assured my reader that this change came about, in part, because I don't really care what you think of me anymore. While the weakening of my filter is related, it's not because I don't care about offending others, it's because there are things I DO care so much about that I speak up much more often than I used to.
If you know me IRL (in real life) you know that I've been a public school teacher for the past 10 years. You might also know that my great-grandparents were CPS (Chicago Public School) Teachers in the 1930s through the 1960s. Several of my aunts and uncles are teachers. My sister-in-law is a teacher. I have firefighter relatives, my father helps run a large, successful park district, my grandfather retired from military, and I'm married to a public defender. Public service is kind of a family thing.
I work in a struggling school district (as defined by the great state of Illinois), but I'm a proud supporter of my school district. We don't suck, really. We're not unsafe, really. We have some star educators, really. The wider I cast my social net, I've realized that some people think poorly of my school district for reasons beyond our struggling test scores (I won't even go there...). Admittedly, the community which houses my school district is a very diverse place, racially, socially, and economically, but I consider this an asset rather than a hindrance. Most of my coworkers have been in social situations where someone bashes our school district, sometimes unknowingly an employee is in his/her midst, but sometimes knowingly. My first reaction when this happens is to speak up. I don't teach where I teach because I can't get a job in a "better" school district. I don't live where I live (I live in district, people!) because I can't afford to live elsewhere. I believe in what I do, and I believe in where I do it. I go to work every day as a small attempt to better the lives of children through education, my small contribution to this life. I bring my own children to daycare rather than stay at home with them because I really want to make their world a better place, and for me that means teaching and defending public education and public school students by way of example. (Not to mention they drive me nuts. I say that with love, of course.)
Like all teachers, I'm not a fan of the expression, "Those who can't, teach." This is a horrible, horrible thing to say about people who spend their minutes, hours, days, weeks, months (even the summer ones!), and years teaching our children. I teach because I can, and I teach because I want to. I teach for my kids, even though they aren't in school yet. I don't apologize for my increasing willingness to speak up for public education. My surgeon told me I can now run, but I have yet to do so. Though he didn't prepare me for the emotional changes after surgery, this conviction to continue to do what I do (teach!) and talk about it (and defend, with evidence, when necessary) is a welcome change. After all, these guys are pretty worth my efforts (aren't they cute?).
Monday, February 22, 2016
I don't know who you are anymore (Part 2)
Astonishingly, Chris does not read my blog. If he were the one writing a blog I'd be all over it, stalking the url for new posts and urging him to write more. Writing about oneself used to be reserved for diaries, which were kept hidden away under the mattress or a loose floorboard. But, now, personal blogs have taken what was once private and turned it into permanently public publications. I'd love it if Chris poured his inner thoughts onto the blogosphere. Alas, he has not, and I will continue my astonishment of his avoidance of "Things Left Out."
I insisted upon reading him my last blog entry, as I wanted him to read it, but I didn't want him to read it whilst driving. So I read it to him as we drove home from a family party, at which a family member gave me a thoughtful and encouraging compliment about my writing (thanks, G!). Chris's first response to my public declaration of becoming a (slightly) different person: "You forgot the Lorna Dunes!" He was right. I forgot the Lorna Dunes. Lorna Dunes are delicious yellow-packaged butter cookies that hospitals seem to have in abundance to hand out after you've fasted for whatever reason, or when you're pregnant and have been asked to wait longer than anticipated and you get a little hungry. How is this relevant, you ask? Well, I have no memory of this event (thanks, anesthesia), but I hazily awoke from my endoscopic ultrasound and biopsy on January 9, 2015 (11 days before my Whipple surgery), and was given a small yellow package of Lorna Dunes. I apparently said, "Ooh, Lorna Dunes. I LOVE Lorna Dunes!" Chris later expressed his astonishment that I even knew what a Lorna Dune was, as he had never heard of them until that day, hence, "I don't know who you are anymore!" So, to him, my last piece of writing had a glaringly obvious omission: the Lorna Dunes.
Whenever Lorna Dunes come up between us, we also rehash the events of that day. That day was truly one of the hardest days of the whole journey, for both of us. It was the first day I saw Chris truly scared about my diagnosis, until then he chose to believe all of the doctors who said that everything would probably be okay. The doctor who performed the biopsy, Dr. Ken Chi, had previously instilled the most hope that I might have something easier to deal with, such as a benign cyst that could be treated with steroids. After my biopsy, I sat in the recovery room with the Lorna Dunes on my lap, and when I was awake enough Dr. Chi came to talk to us along with the nurse who helped with the procedure. Until that day, I had never truly seen a doctor deliver bad news to a patient. That patient was me, so I really felt the weight of the experience. He spoke in a low, nearly apologetic tone, telling us that I definitely had a tumor. You could see in his face and hear it in his voice that this was the "bad news" delivery. Even the nurse standing next to him looked as if he was witnessing something awful. I asked, "but it hasn't spread, right?" He replied, "there is no evidence of spread." I knew the omission from that statement. What he really was saying, "While this is no evidence of spread, we won't really know until we get in there for surgery." He gave me the "differential diagnoses," or, the different things the tumor might be. His best guess was the pseudopapillary tumor (he was right, thankfully), after that, a neuroendocrine tumor (still treatable), but after that, adenocarcinoma. A doctor finally said the worst-case scenario out loud. Adenocarcinoma. That's the pancreatic cancer that kills most patients within six months of diagnosis. Chris and I left feeling crushed, really. The next five days were sooooo long waiting for the biopsy results. The biopsy results were best-case scenario, thankfully. I barely noticed that the doctor told me I had a "low grade malignancy" in my pancreas. I was going to be okay.
That experience changed me. I had been diagnosed with a miscarriage several years prior, and the doctors who saw me for that treated me with compassion and sympathy, but their delivery of that bad news barely holds a candle to the delivery of bad news I was given on January 9th of last year. I feel so badly for anyone who has gotten such delivery of news for any reason. Stressful only scratches the surface of ways to describe that event. I won the lottery when it comes to pancreatic malignancies- I got the well-behaved one. Still, that day has become a part of who I am and how I treat others.
I have revealed a little more of myself to you, and a little more of my husband's experience (sorry, Chris, if you are even reading this). In exchange for your time, here's a little more of that ink:
Sunday, February 14, 2016
I don't know who you are anymore (a.k.a. being true to oneself)
When my husband found out I started writing this blog, he said to me, "I don't know who you are anymore!" This was coupled with the "new" information that I happen to really love Johnny Cash's version of "Hurt," of Nine Inch Nails The Downward Spiral fame. I say "new" because this should have not been new information to anyone, really, as it's a fantastic rendition of an already great song, but when I started publicly writing about my personal struggles (and liking Johnny Cash/NIN), I somehow didn't fit who my husband perceived me to be. He had to adjust his perception of me, and I'm fine with that, and though I can't speak for him, I think he was fine with that, too.
So why confess that I'm down with Phil Collins? Not just Genesis Phil Collins (that was always OK), but regular ol' solo artist Phil Collins. To illustrate a change that happened slowly over time and all at once. I say slowly over time because I think confidence sometimes accompanies age and experience (but not always), but all at once because of my experience with my sort of cancer and surgery. I don't care what you think of me anymore. You think I'm a bossy know-it-all akin to Hermione Granger? Fine. You don't like me? Yep, I probably know you don't like me (and I don't care). You don't agree with my viewpoints, political, religious, or otherwise? Oh, well. Don't get me wrong. I care about YOU, your thoughts and opinions (even if they don't align with mine), and your mere existence in this magnificent life, but I don't care what you think of me. Really. Sure, I still get insecure at times. For example, writing like this leaves me feeling a bit vulnerable, but overall, I'm doing what I do because I want to. Not because of how you will perceive me.
In addition to the admission that I unapologetically like Phil Collins, I have physical evidence to provide.
Tuesday, January 19, 2016
Happy Whippleversary to Me
One year ago today I underwent an 11 hour surgery to remove a 9.5 cm tumor from the head of my pancreas. Those of us who have had The Whipple call these anniversaries "Whippleversaries." So, happy Whippleversary to me. I remember that day all too clearly (except the 11 hours I was anesthetized, of course). I remember the drive to the hospital, checking in, and waiting in the waiting area. I remember the awkward prep for surgery, I remember the surgical nurse telling my husband Chris it was OK to kiss me before I went into the operating room, I remember getting an epidural. If you've ever been "out" by way of anesthesia (the "black magic of medicine," as so named by my BFF), you know that time passes in an instant (or it does for me anyway). So after the epidural I remember waking up, being extubated (they took out my breathing tube /respirator), and being wheeled to my room in surgical ICU. I remember seeing my husband, Chris, who seemed giddy to see me and couldn't stop saying how good I looked, which was funny to me because I had never felt more terrible. I remember my surgeon came to see me in recovery with an imprint of the mask on his forehead from looking through the DaVinci robot to operate on my insides for hours on end. I was freezing cold, and my surgeon called me a "popsicle" in his soothing Italian accent. My father and stepmom (who had been there all day, too) came in to see me. They told me they loved me and they'd be back the next day. I remember telling my husband that no, he should not spend the night, our kids needed him more than I did. I remember spending a long night (mostly awake) listening to the sounds of the ICU.
Thankfully, the next couple of days passed in a blur of sleep and pain meds. I remember more than I'd like to, but I'm indeed thankful for what I forgot. Apparently I had a concerningly high heart rate that was feared to be a pulmonary embolism or a blood clot somewhere else. I did not. But they put me on blood thinners that may have slowed my recovery. I'm OK with that, as I left the hospital 2 weeks later without having faced a serious complication.
I can't say I'm thankful for the experience. I'm thankful to be alive and tumor free, I'm thankful that the Whipple surgery exists, I'm thankful to have been eligible for surgery, I'm thankful for my surgeon, and I'm thankful for my seemingly hundreds of doctors and nurses (realistically, I had tens of doctors and nurses) who managed my care. So, I'm thankful for so much, but that surgery sucked. I've been told that all surgeries suck, which I now willingly believe without the necessity of experience.
For many people who undergo the Whipple, the surgery is just one step of their care. Many people face chemo or radiation before or after or before and after surgery. My tumor did not require such adjuvant therapies. I am thankful for that.
I am thankful for so much. For family and friends who visited me, who washed my hair and rubbed my feet, who talked to me when I wasn't dozing in and out of sleep and who just sat in the room with me so I wasn't alone. I'm thankful for everyone who sent me well wishes and prayers and fed my family.
Maybe the day will arrive when I can say that I'm specifically thankful for having had the experience of the Whipple, but for now I'll be thankful for the positive effects of the Whipple (no tumor) and everything else positive that surrounded that surgery and recovery. I'd like to think I could have learned the life lessons I learned with a gentler experience. But for now, that's the best I can do.
Happy Whippleversary to me, the first of hopefully tens of Whippleversaries.
Saturday, January 9, 2016
Anniversaries (part 2)
A year ago today I received what was probably the most traumatic news of my tumor experience. The news that I had a mass in my pancreas that was probably a tumor three weeks prior was also pretty traumatic, but I would place it at a close second.
In mid-December I had a CT scan that revealed something amiss (a.k.a. a large mass) in my pancreas. The next day, a Wednesday, my GI Dr. Bansal told me about my probable pancreatic tumor in an incredibly gentle way; I'm still in awe over his bedside manner. That Friday Dr. Bansal performed an EGD (in the simplest terms, he stuck a thin camera down my throat while I was under anesthesia and looked around and took a few biopsies, or samples of cells). I knew I would have another EGD in a few weeks (January 9th, 2015, to be specific) that would reveal much more diagnostic information. The first EGD revealed nothing unexpected, and we all got to see the bulge of the alleged tumor from inside my stomach via camera. No wonder I didn't feel good. The tumor had not grown into my stomach, so that was good, but beyond that, we would have to wait until a biopsy of the actual tumor (and not just the lining of my stomach) could be performed.
In order to biopsy the actual tumor, I needed an endoscopic ultrasound (EUS) with fine needle aspiration (FNA). So, to simplify, an ultrasound machine was stuck down my throat along with that camera, and they biopsied the tumor using a needle by way of my small intestine (the ultrasound allowed them to see the mass so they could accurately obtain a biopsy). January 9th was a date I awaited with a fair amount of nervousness, but also looked forward to for the relief of information. Dr. Chi, the GI who performed the EUS/FNA at Lutheran General Hospital, was optimistic that the assumed pancreatic tumor was actually a cyst, and best case scenario, may have been treatable without surgical intervention. So, January 9th we would get more information.
I arrived at the hospital with a crazy high heart rate (nerves), and I was looking forward to the nothingness of the required anesthesia so I'd wake up to hopefully good news. My poor husband had to endure the wait of my procedure awake. After my procedure, I was visited by Dr. Chi. We did not get the good news we were hoping for. The mass was definitely a tumor. A big one. He gave us differential diagnoses, or several types of tumors the biopsy may reveal. He said it was most likely a pseudopapillary tumor, followed by a neuroendocrine tumor (the Steve Jobs variety of pancreatic tumor), followed by adenocarcinoma (the Patrick Swayze variety of pancreatic tumor), a highly deadly (and the most common) form of pancreatic cancer. Reflecting upon this crappy experience, my husband said that he had never seen a doctor give bad news before. It sucked. It's difficult to say something positive about the experience. I learned from it, surely, but it simply was awful.
What did I learn? When something is wrong with your body, it is difficult to say the least. Dealing with the unknown is tough, dealing with the possibility of being diagnosed with a highly deadly cancer is downright traumatizing. I learned to never minimize what someone else is going through. Don't compare your awful to someone else's awful. For the individual, it is a personal and difficult experience. Hearing that it's going to be OK or that it could be worse really isn't that helpful to the one suffering. I said those things numerous times during my tumor experience, mostly to make other people feel better. The most comforting things people said were honestly the people in my who acknowledged how awful this was and they didn't try to minimize or overshadow what I was going through. So when someone tells me about their heartburn or depression or whatever, I listen and acknowledge how hard it is. I don't say, "well, at least you don't have 'x' going on." It's not helpful. It's just not.
This is not a particularly uplifting piece of writing. Last January 9th was not a particularly uplifting day. One year later, I'm fine, and on this day in 2015 I was 6 days shy of receiving relatively good news. But I hadn't received it yet, so I was feeling pretty low. Some of the people close to me might remember how uncontrollable crying spells would happen at unexpected times, like at work. I'm very thankful for my understanding coworkers and the social worker who sat with me and got me to at least stop crying. One year later I'm so thankful for a relatively indolent tumor and modern medicine. And while I'm not thankful for having a tumor in the first place, I'm thankful for what I learned. Never minimize what someone else is going through. We all have our moments of awful.