Yea, I'm THAT Viewer... aka no longer one of Bethenny's girls

When I was a kid hanging with grandma, anyone who crossed her was subject to "a nasty letter." These were not empty threats. I can still see her clearly, sitting at the kitchen table ... Laying down beautifully scripted letters onto one of her many charity adorned notepads (you know - those long skinny pads of paper that come with donation envelopes)... a seemingly unending roll of stamps within arms reach. Her words were elegant and biting; she was a school teacher after all.

Fast forward to 2013... Now even lazy, inarticulate people can write "nasty letters" through social media. However, many of these "joe-lunch boxes" fail to put any thought into composition, audience or purpose. These days verbal tourettes seem to have replaced constructive dialogue. Well, this week I took a page outta grandma's play book, and fired off an angry message myself to the talk show host Bethenny - of all people.

My Bethenny Facebook post lasted maybe 5 min before it came down ... But I finally got what grandma has known for so long - speaking one's mind to "strangers" whom need reality checks is a cathartic experience worth the effort. My Facebook post was about the nauseating twitter backlash to the new Miss America, and Bethenny's failure to address a serous epidemic in this country: racism. ( See below)

Racist Tweets Against Davuluri:

 

My Facebook Post on Bethenny:

 

He Stole My Heart, So I'm Stealing His Last Name

"Before you cross the street take my hand. Life is what happens to you while you're busy making other plans." John Lennon, "Beautiful Boy"

I guess I'm guilty of writing when I'm worried ... Sort of like only going to church in times of trouble to seek strength - instead of also going in times of joy to sing praise. I often wonder if God sees me in moments of happiness and sighs, wishing I'd "check-in" more with good news instead of always bothering him with zombie-apocalypse worthy "worst case" scenerios. 

It's no surprise then that I've been neglecting my writing ... lately I've been busy living a wonderful, love-filled life. So I wanted to share one of the happiest moments in my journey with all of you, who have stuck valiantly by my side during the rocky parts.  

A little over a year ago, my days consisted of hospital ERs and going over possibilities of assisted living with friends and family. I could barely walk and weighed about 100lbs (I'm 5'5). The pain was unbearable and the future looked less then bright. 

A  nurse at Sloan Kettering once told me, "we are very good at saving lives here, but not always so good at improving the quality of life." The connection between mind and body, hope and recovery, can not be overstated. The western medical world of pharmaceutically funded solutions keeps us breathing, but it's eastern holistic medicine (yoga, meditation, etc) that keeps us in a place where we see the value in each breath. We need both.

When things were seemingly on an unending spiral downward, I met my fiancé Victor. I wasn't looking for love, it found me. A year later he proposed. I live in Queens now, and my heart truly feels home. My vitals are stable and the symptoms manageable; and my will to live a life with my best friend and incredible future husband is the best medicine God could have ever given me. For everyone who helped me get to the best chapter of my life thus far...Thank you - from the bottom of my heart.

Above picture: four of my students dressed up as characters from Grey's Anatomy for Halloween; my little sister Meredith - who graduates from Med school this year... My students, fiancé, friends and family envelop me in support each day

Remembering JFK on the 50th Anniversary of His Assassination

"When written in Chinese, the word 'crisis' is comprised two characters. One represents danger and the other represents opportunity." - JFK

grandma on her 91st birthday reading the Jackie-O book I gave her

Friday was the 50th anniversary of JFK's assassination.  

Kennedy's life of service started in the Navy, where he won a Medal of Honor for his heroic conduct as commander of a ship that was sunk by the Japanese in 1943. Although injured, Kennedy actually swam to 2 different islands while towing a badly burned crew-member by clenching the man's life jacket strap in his teeth. JFK's leadership secured the direct rescue of the surviving crew members. Kennedy was 26 yrs old at the time; he would be killed 20 short years later.

My grandfather served in the air force in WWII. My father graduated from West Point and was stationed in Berlin. I was born on a military base, and when I was 18, I secretly eloped with a US Marine (and divorced Kardashian style -16 mths later). You can say I grew up in a military trifecta. They say "alls fair in love and war" - but whomever said that, never experienced the losing side of either.

Those who sacrifice their lives to serve our country embody the best parts of humanity's capacity for courage. 

Bloody battles, however, aren't exclusively reserved for military maneuvers on foreign soil; there are plenty of personal wars that require just as much fortitude, strength and guts. Whether you're fighting an insurgent, an addiction, an illness, or an abusive relationship ... sometimes all we can do is live moment to moment - pushing through the fear. But as JFK said, "we should not pray for easier lives, we should pray to be braver men."

Nov 10th, was National NET Cancer Awareness Day. When I was first diagnosed with Carcinoid cancer, my father gave me some advice from his army commander: "don't worry about winning the war, you just have to be in a better position today than you were yesterday." 

I wasn't fazed by my right-hemicolectomy surgery until my 5th day in Sloan Kettering postoperative... Suddenly I became very, very tired... tired of throwing up, tired of pain, tired of needles, tired of the parade of nurses and doctors with encouraging words, tired of getting re-catheterized, tired of collapsed veins and failed IV ports. My mother saw my waning resolve and said, "this is where you earn the title cancer SURVIVOR... If it wasn't hard, they'd call it something else."

It hasn't been easy, but I finally started feeling well again these last 6 months.  Last week, however, my "leave" was up - and old symptoms returned: stomach aches, flushing, crushing pain, fevers. In military terms, it's called a STOP LOSS, which is when a military member is not allowed to separate or retire once their term of service is over. It's one of those "catches" they don't tell you about when you enlist. Bottom line, your life is turned over once you join the military, just like your life is no longer your own when dealing with rare illness. Who knows if these symptoms are signaling a second tour of duty in the battle against Carcinoid, or if there is a new enemy ... either way, time to cowboy-up and go back on the defensive.

Summer Waters

The charm of fishing is that it is the pursuit of what is elusive but attainable, a perpetual series of occasions for hope. - Buchan

Over Labor Day weekend, Victor and I woke up at 5 am and headed out to Sheepshead Bay for a day of fishing on the The Marilyn Jean IV.

It was my first oceanic fishing trip... Ever.

Turns out, I'm a pretty good fisherman. We caught 21 fish - 14lbs - and I loved every minute of it; after all, I've been addicted to boats ever since I was a little girl. 

Growing up, school days were volatile. I was what polite people (and kind social service workers) call, "a challenging kid." I turned out ok though - I even delivered the student president commencement speech at my graduation from USF School of Law. 

Part of the reason why I didn't completely fall off the grid was because as chaotic and out-of-control 10 months of the year were for me, summers were conversely quiet and structured. My beloved grandfather was at the center of my calm; a respite from a violent and unrelenting Sandy-size home front storm. Since I was 9 years old, my grandfather and I spent early summer mornings on the lagoon behind our Jersey Shore house, on a wooden row boat - hunting for ruddy-colored crabs that were clinging to the piers.

Those moments - just grandpa and me - are some of my sweetest and most foundational childhood memories; and probably why I grew up loving surfing and wake boarding... the brackish smell of salt air has always managed to stir a deep sense of peace within me.

My grandfather died last year, and I miss him every day. He would have been proud of my Labor Day catch. I see so much of my grandfather's heart and protection in Victor; even my grandmother has drawn countless parallels between the two. I am blessed that Victor met my grandfather before he passed, and that they both more than approved of each other - they admired each other. I don't think it's a coincidence that God brought Victor into my life just as he was starting to take my grandfather away ... And it's on the water where I feel the closest to all three. 

My grandpa - Frank DiMaria April 21, 1922 - April 21, 2013

“He remembered the time he had hooked one of a pair of marlin. The male fish always let the female fish feed first and the hooked fish, the female, made a wild, panic-stricken, despairing fight that soon exhausted her, and all the time the male had stayed with her, crossing the line and circling with her on the surface. He had stayed so close that the old man was afraid he would cut the line with his tail which was sharp as a scythe and almost of that size and shape. When the old man had gaffed her and clubbed her, holding the rapier bill with its sandpaper edge and clubbing her across the top of her head until her colour turned to a colour almost like the backing of mirrors, and then, with the boy’s aid, hoisted her aboard, the male fish had stayed by the side of the boat. Then, while the old man was clearing the lines and preparing the harpoon, the male fish jumped high into the air beside the boat to see where the female was and then went down deep, his lavender wings, that were his pectoral fins, spread wide and all his wide lavender stripes showing. He was beautiful, the old man remembered, and he had stayed.” 

― Ernest Hemingway, The Old Man and the Sea

Back to School and Extinct Indians

It's been a while since I last wrote; you see, the month of September for teachers is like April 14th for tax attorneys.... an insane blur. Days are filled with new classes, new students, new administrative demands, back to school nights, open houses, faculty meetings, department meetings, summer reading projects, 5am alarms, essays, quizzes, and dress code detentions.

I primarily teach upper division literature honors courses, but this year I also have one section of 10th grade American Lit Honors. During the first week of school, one of my sophomores reminded me that I have to readjust my expectations a bit for my younger students....

Me: "Alright everyone, what do we know about Native American culture?"
10th grader: "All I know is that Native Americans are extinct."
(other students nod enthusiastically in affirmation)
Me: "Respectfully, I think a lot of Native American people would disagree with you on that."

During the rest of the class, my mind kept conjuring up visions of an "extinct Native American" stoically standing next to a Woolley Mammoth in a display at the NY Natural History Museum - spear in hand, ready to take down the mighty tusked beast.

Let the year begin....

The Spider Grandmother did give two rules to all men, not just the Hopis. If you look at them, they cover everything. She said, "Don't go around hurting each other" and She said, "Try to understand things." - William Least Heat Moon.

Status Update

“The only thing worse than a social networking junkie who breaks out in a cold sweat if she hasn't updated her page in the past ten seconds is the person (usually it's a guy) who proudly refuses to join Facebook. You know, that same d-bag who held out on getting a cell phone until, like, 2002.” - Andrea Lavinthal, Your So-Called Life

One of my good friends and co-worker gave me a Facebook shout-out on a recent modeling shoot I did (more on that later....)

I don't use Facebook often, so when someone posts about me, I turn it over and over in my mind - like a grain in sand trapped in an avalanche wave. So often our souls are beaches made up of negative moments ...  and the good stuff goes out each day with the tide. Is too much ego detrimental to the human condition? Yes. But those with truly inflated egos in this world are few and far between; the majority of us are just treading water the best we can, and a genuine compliment helps us charge the next set of challenges with a little less fear.

"Each Warrior wants to leave the mark of his will, his signature, on important acts he touches. This is not the voice of ego but of the human spirit, rising up and declaring that it has something to contribute to the solution of the hardest problems, no matter how vexing." - Pat Riley

Comparative Literature 101

Hemingway drank and
wrote about whales.

Ginsberg got high and

wrote about God.

Same thing.

The Power of Connection

"We don't accomplish anything in this world alone... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads form one to another that creates something." Sandra Day O'Connor.

 

Recently, I received an email from Grace Goldstein, the Chief Operating Officer of the Carcinoid Cancer Foundation, letting me know that CCF had featured my blog on their Facebook page. I was honored and touched by her faith in my words.

...from CCF's Facebook Page

Sometimes I forget that I have a rare disease. And sometimes, I think I'm cured. And then I get test results and realize - nope... I'm still a medical mystery.  CCF is an amazing place where carcinoid patients can connect and educate themselves about this rare cancer.

I would like to share a recent message I got from a fellow zebra, Christina, because sometimes I forget that I write for more than just myself. I get lazy and down because I think - who's really listening anyway...right?  I mean... I'm just writing words so they can aimlessly float around in a starless cyberspace... so who cares if I go for a Red Mango Fro-Yo instead of blogging? (Red Mango is delicious by the way, but I digress.)

But Christina and Grace, and all my fellow carcinoid friends, help remind me that one of the purposes of my blog is to connect --which not only might help others facing the same baffling carcinoid questions that I do, but also help ME continue on with this quest, which sometimes seems like a never-ending riddle that gets even more complex with each lab print out and doctor's furrowed brow. 

Below is part of an inspiring email I received from a fellow zebra Christina (visit her site at Caring Bridge)

Hi Beautiful Marlena! 

My name is Christina and I am a huge fan of yours.. not only have you lifted my spirits, helped me to feel less alone (less alone regarding the whole Carcinoid nightmare), your whimsical and soulful writing has also opened my heart and helped me heal.. thank you dear one.

I was finally diagnosed with Carcinoid Syndrome January this year (having been misdiagnosed for over 5 years ) By February I was in Carcinoid Crisis and by Feb 21 my surgeries ( liver 70% taken out. Over a foot of small intestines taken out and several organs removed for good measure). Since then I have been in ridiculous pain 24 / 7. Have had bile leak, followed by a mean bout of painful gut retching pancreatitis, stints put in and several other issues that have come up since.
 

Needless to say I feel lost, tired and scared…..
 

To say it has been a Hell ride would be an understatement.. it has been – by far – the worst experience of my life.. yet there have been some miracles along the way .. Back to YOU. Thank you for your brave willingness to share your thoughts, efforts, feelings, hopes, … your LIFE! You are such an inspirational Lady and this makes reading your posts that much more interesting and uplifting!

...

So, dear lady, I wish you and your loved ones AND CCF all the love and healing in the world. Hopefully our paths will cross. And may you have great health and many years of adventure and bliss and love!

Warmly and with Aloha
Christina

Breath in the Funk

My Bikram yoga instructor began Friday's evening class with a stern warning,"If your fingers start to go numb, it's very important to tell me right away so I can give you an electrolyte pack, otherwise your face will go numb and you won't be able to ask for one."

He was not joking.

It was sort of like hearing a perky flight attendant go through the oxygen mask "safety demonstration" right before taking off in a flying oblong box... unnerving.

Woody Allen said, "80% of success is showing up." Obviously, Woody Allen has never taken a hot yoga class before.

Bikram (aka hot yoga) is one of the hardest things I've ever survived - and as a "beginner"... surviving is the best you can hope for. Bikram definitely requires more than just showing up; it requires unwavering willpower and fearless focus in order to complete the 26 grueling postures in a studio that's ideally set at 105*F with 40% humidity.

You start sweating about 4 min into a Bikram class. And when I say sweat, I mean water gushing out of every pour in your body - so much sweat that you can't even grip your ankles because your hands slide right off.

There is an undeniable funk about hot yoga rooms, despite odor eating machines and regularly shampooed carpets. I guess that's part of it. You got to breath in everything in life - even the unpleasant - in order to push yourself towards improvement.

Our instructor was incredibly motivational. When students started dropping (and some always do), he would stand next to their mats and assure them "I'm with you." In addition to periodic reminders about finger numbness, he constantly reminded us to breath into poses. People tend to hold their breath when they are in pain; and "relaxing" into pain and nausea isn't an easy task. It's nearly impossible.

But that's the entire point. Bikram teaches you how to deal with your body when it's "uncomfortable" - which is exactly what people desperately try to avoid feeling on a daily basis.  It's about making thousands of tiny adjustments in order to just get from breath to breath - squeezing, pulling and bending your body into perfect form under imperfect conditions.

You may be thinking: if it's that hard, why do people do it? Because after finishing a class, you feel completely cleansed - spiritually and physically. Bikram gives you clarity, which is worth the suffering.

So tomorrow I'll go back to the studio - to breath in the funk and exhale everything not essential for surviving the moment.

My yoga class… is one long, hot meditation. We put incredible pressure on you to teach you to break your attachment to external things and go within. Instead of blaming others for your own weakness, fear and depression, you will learn to take responsibility for your own life.

You’ve got to face yourself in the mirror, every part you don’t like, every mistake you make, every excuse your mind creates to limit your potential liberation – there’s nowhere to run, nowhere to hide. No escape from reality…

After you learn to discipline your body and mind under these conditions, you will truly be able to concentrate; no external will be able to break your powerful focus.

That’s why I say that the darkest place in the world is under the brightest lamp. In the Torture Chamber of my class, you will find a beautiful light, and the source of that light is within you.

~Bikram Choudhury

Carcinoid Cancer Diagnosis Anniversary

April 27th was the 4-year anniversary of my Carcinoid Cancer diagnosis. If cancer can be described as a roller coaster ride, then these past couple years have had some crazy loop-to-loops, upside down turns, and gut-wrenching drops. There really isn't a lot that is stable anymore; it's just learning to breath during the times when the roller coaster slows down or is climbing.

This past summer I lost over 20 lbs in 6 weeks - and was down to 104 lbs (I'm 5'5). I couldn't walk; I was having palsy episodes; I was in excruciating pain all the time... my two best friends, Rob and Mike, took me into their home, and instead of enjoying their summer - they applied cold packs, created complicated pain medicine schedules, carried me to the car for ER trips, picked up my prescriptions in the middle of the night, and took turns staying by my side 24-hrs a day.

None of my doctors could explain why my body was shutting down.. the blood tests were almost indecipherable - anemia with high iron, blood counts and sizes in direct conflict with each other... my doctors ruled out all the immunity issues: Lupus, HIV, etc - finally, elevated 5-HIAA "increased their reasonable suspicion" that it was probably the cancer or after-effects of the cancer. Just as inexplicably as it came on, the process started reversing itself in November.

That's the thing about the neuroendocrine system - it affects EVERYTHING... and even when the doctors tell you it's not the cancer; if there really is no other explanation then you got to trust your gut. I'm back up to 118 lbs and eating again. My palsy is at a minimum and the pain is managed well without narcotics. So I'm in that breathing space right now... but weird symptoms and pain remind me that I'm still strapped into that roller coaster seat... locked in.

I'm grateful for all of the love, strength, prayers, and support that my friends, family, colleagues and the Carcinoid community have given me. I know this - even if I'm stuck on this roller coaster for a while longer, I've got amazing people in my life who have opted to take that ride with me, and others who are on the ground - waiving... cheering me on.

Today's Grammar Lesson

Today was the first day back from Spring Break. I started classes by innocently asking them to "spell the word grammar"; more than 1/2 of my students spelled it grammEr. I shook my head and told them to get warmed up for "grammar bootcamp" this week.

For fans of the great book "Eats, Shoots and Leaves" - here are a couple of Monday giggles for you. Enjoy.

We started out discussing the importance of commas using the above lesson; and interestingly nearly 100% of my high school students punctuated it like the "college males"

We then moved onto this funny, yet accurate example of word misuse...

And finished with attempted ardvark murder charges...

Oz and Onions

"Pay no attention to the man behind the curtain" - The wizard from The Wizard of Oz

I teach literature. More than that... I (at least try to)  teach how and why we study literature.

I use the analogy of an onion with my kids, and explain that you only truly "feel" the onion when you peel back its layers ... when you reach its core - that's when your eyes water and you get that catch in your throat.

It's the same with literature... whether we are connecting  Freud's theory of the id, ego and superego to Dr. Jekyll and Mr. Hyde - or comparing the dream of a better life in 1920s America (Great Gatsby) to 1950s Apartheid South Africa (Master Harold and the Boys) ... I do my best to help unravel a deceptively simple package so that my students can see the true meaning of the work - and feel its full artistic potency.

It is about this time of year that I get students telling me, with HUGE smiles on their faces, that I've ruined their lives... today was no different. One junior came bouncing up to me in the hallways and said, "Ms. Johnston - I hate you, I just saw the movie Oz The Great and Powerful and found all this symbolism in it. I can't just watch a normal movie anymore - now I see everything! My boyfriend was really annoyed." (I told her to find a smarter boyfriend.)

Over the weekend, I received two big compliments from recent graduates about my teaching strategy ... sometimes as teachers we never know if our lessons carry beyond the walls of our classroom. Like the "mighty" wizard in Oz - who was just an ordinary, little man - we all need to be reminded from time to time that just because we are minor characters in most people's lives - that doesn't negate our impact in their life story. Thank you to all my students who truly give my life and work meaning.

Instagram from one of my seniors who graduated 3 years ago

text from one of my seniors who graduated last year

Sloan Kettering Update

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof. - Barbara Kingsolver

October 2012
104 lbs

All summer, and and in the beginning of the fall, I kept loosing weight and muscle control. I got down to 104 lbs from 127 lbs in a matter of 6 weeks, and despite a 3,500 calorie diet I just couldn't manage to put any weight on. My coordination got worse - things would slip from my hands and my legs would buckle from under me.

We were worried: my doctor's, my family and my friends. My bones felt crushed in an invisible vice... it seemed hopeless until October, when I met my boyfriend Victor.

February 2013
113 lbs

As our relationship began to grow, slowly the weight starting coming back on. The body and the mind are inextricably linked; and the value of being loved and adored - and having someone to devote yourself to - cannot be underestimated in the fight against elusive illnesses. Over the past four months I've gained 11 lbs and recently had a CT scan at Sloan Kettering, which showed that my condition is stable.

Sloan CT - STABLE Feb 2013

We are still realistic about future complications. That's the problem with rare illnesses - whether my ongoing health issues are related to Carcinoid or not, as Dr. Nash said during my last visit, doctors are very good at saving lives but not always so good about improving the quality of life with chronic conditions. Above all, hope is what will in the end make the fight worthwhile.

Measuring New Year's Resolutions in Degrees

Traditionally, when my students come back from winter break, I take a brief hiatus from Shakespeare to discuss new year's resolutions.

When I ask my students, "who made new year's resolution for 2013?" - lots of hands go up. The class lists off some of the usual suspects, which I end up scribbling across the chalkboard... "lose weight, quit smoking, go to the gym etc"

Then, I boldly assert that "over 90% of new year's resolutions are doomed to fail - all because people don't know anything about etymology."

SIDE NOTE: Unfortunately, immediately after making this statement, one of my very smart and very quirky students became visibly concerned. I asked him what was wrong and he replied stone faced,"my resolution was to stay alive this year." Despite being in good health, he was dead serious (no pun intended). I reassured him that I was confident he would fall into the 10% success rate. My job is a lot of things, but it's never predictable.

After calming the fears of my one student, I explained the etymology of the word "resolution" - which comes from a Latin term resolutionem (nom. resolutio), roughly translating to "the process of reducing things into simpler forms."

Most people fail in changing their lives because they make things too complicated, or try to change too much.  They don't respect the etymology of the term and therefore end up right where they started prior to the stroke of midnight on New Year Eve.

Someone very wise once gave me sound resolution advice, which I now pass along to my students: try to just change your life by one degree... after all, whether or not water boils or freezes is only separated by one small degree of temperature difference. If one degree can completely change the form of water - imagine what it can do for your life.

Boiling point of water is 100°C or 212° F 

For example, instead of making a huge complex resolution like "I'll lose weight" - come up with a simple one degree change... a small part of the solution - like, "I'll add one vegetable to every weekday dinner." It's amazing how much you can alter your entire lifestyle by just changing one simple thing.

So what's my resolution? What's my one degree of change? To write a haiku every day. A simple 5-7-5 form just might be the reflective device I need to keep me moving in a healthy, creative direction. They don't need to be witty, or profound, or good - just an observation... a moment to look around at my life instead of run through it.

So here is my first one.

Facebook Haiku

cuz status update:

"Jersey Shore Boardwalk Ready

By 20-13"

UPDATE: March 2
My resolution turned out to be a little more than one degree.....

Haiku Abandonment 

Who knew haikus would 

be such an arduous task

to capture the day