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.