New Ink

“A tattoo is a true poetic creation, and is always more than meets the eye. As a tattoo is grounded on living skin, so its essence emotes a poignancy unique to the mortal human condition.” - V. Vale

"everything was beautiful and nothing hurt"- my first tattoo

Unfortunately, my inkwell went dry for a while - despite a deep reserve of new stories and major life changes.

I have been feeling guilty about my silence. I can almost envision a disappointed Kurt Vonnegut, shaking his head as he rhetorically asks, "Who is more to be pitied, a writer bound and gagged by policemen or one living in perfect freedom who has nothing more to say?" My response to K.V. is - both.

I began thinking: How will I ever start blogging again? Where will I begin? I even pulled out my laptop a couple of times, but there just seemed too much to say... the white computer screen unblinkingly stared back at me, mocking my indecision.

But as Bukowski once said, even "writing about a writer's block is better than not writing at all." So I decided to start writing again, which meant haphazardly picking a moment from the past few months to reflect upon... I finally settled on November 17, 2012 - the day my close friend took me to his seriously cool tattoo artist at the "Tattoo Garage" in Bloomfield, NJ.

For the past 10 years, I have wanted to tattoo my favorite quote from Slaughterhouse Five across my back. The quote reads, "everything was beautiful and nothing hurt." Perhaps it's because my young life was wracked with such pain that I've been repeatedly drawn to these words; however, something always seemed to get in the way of putting ink to skin. I think I now understand why - sometimes, even if we know what we want in life, we aren't yet ready for it.

Everything about the day of my tattoo felt right. I loved the fact that my friend's artist was in Bloomfield - the town where I was starting my life over again, after a long battle against Carcinoid cancer; and after ending a 5-year relationship with a good man - who just wasn't the right man.  I finally felt like I had reached a point in my life where I was ready to take a shot at happy possibilities instead of merely falling back on survival instincts.

Shortly after getting my tattoo, wonderfully positive things began to happen.  I met an adoring man who actually understands who I am at my core, and has made me feel more loved than I ever thought possible. I've begun to finally put on weight again, and have managed to go from a size 00 (I didn't even know they made a "double zero") to a size 2. I started seeing a new oncologist, who is running the right tests and helping me stay on top of the cancer. And finally, I am continuing to develop friendships with deep roots and supportive care.

Truly now, my tattoo isn't merely a black and white quote ripped from the pages of my favorite book - but rather a living testiment to the idea that beauty is attainable if one can force themselves to push past the pain.

Back to School

"The dream begins, most of the time, with a teacher who believes in you, who tugs and pushes and leads you on to the next plateau, sometimes poking you with a sharp stick called the truth" - Dan Rather

One of my recently graduated seniors - passing along motivation for me as I return to work :)

I started teaching again - hesitantly. I get these pain spikes that are almost seizure like and crippling. It's hard to predict them, and my walking was still very weak when I first returned to work.

Luckily, the physical aspects of teaching (including standing for 40 min at a time) have really helped to reverse some of the atrophy in my quads, and some days, my walking is as fluid and seamless as a flowing stream. Other days, I'm shaky and clumsy ... there really isn't any rhyme or reason to it.

The first week of school, I told my students about my general health status. I basically said, "I want to stop the rumor mill before it starts, and as my students I'm going to share something with you that I believe you have a right to know. I have an illness that causes me pain sometimes, and I may start shaking in class. You may see me walking down the halls, and I may look like I'm really hurting. Do not worry or be afraid, I am fine. I am not dying - I'm not leaving you. I assure you, the pain is not as bad as it looks and my Carcinoid cancer is under control. If you want to talk more about this privately, I'm happy to do so."

I teach the honors English courses for juniors and seniors, and my kids are amazing; they totally get it and have adjusted accordingly. For example, sometimes my writing is too shaky because of the palsy like tremors in my hands, and a kid will take over at the chalkboard.  If I need to sit (which I can only do for a few minutes at a time because of my animated teaching style), they become eerily quiet so that I don't need to raise my voice beyond a normal speaking tone.

I was having great days the first couple weeks of school, and even better lessons... until I got a pain wave last week after 1st period. When these waves hit, it feels like my entire body is in a trash compactor and my bones are being broken. I had to be driven home by a friend, and then Mike and Rob drove my car to my apartment later that night.

I was embarrassed, and almost didn't want to return to school... I started questioning whether or not it was fair to my students to continue teaching given my illness; I felt guilty that the pain prevents me from preforming at my absolute best, and I am uncomfortable with the fact that there will be days I have to miss because of the unpredictability of my symptoms.

I returned to school two days later to find a beautiful card from my 3rd period, and had every kid rushing up to me to ask me if I was alright.  Many of the teachers (including the librarian) said that my students were really worried, and kept asking them if they knew anything about my condition ... one teacher even remarked, "I can't believe how attached they are, and how much they love you after only a couple of weeks!"

Card from my Current Juniors 2012

My kids' reactions, along with the overwhelming, genuine concern and compassion of my colleagues, made me realize that I had the support system to continue, and my students are better off with me (even if I'm not 100%) than without me.

As long as I can stand, talk, and breath - you can find me in room 126, discussing Beowulf, Ramayana or life choices... challenging kids to think about their identity, and pushing them to understand that they must create their own opportunities in life. Below are just a few pictures from the end of the summer / start of school... I am grateful that I am able to live my passion every single day.

Pictures: After my students graduate, I allow them to "follow me" on Instagram, and give some of them my number in case they need anything.

(Instagram Photo) One of my students (at Rutgers) showing me that she is writing in the journal I gave her for graduation

(Instagram Photo) College Send Off Lunch 2012: love these boys and their constant shenanigans (never in my class of course)

(top left - email from one of my students from last year who won the Gates Scholarship... love the subject line; top right - taking two of my recent grads out to lunch... these two are super special because I taught them both Jr and Sr year - and they're awesome of course; bottom - email from parent following last week's Back to School night -- I taught her daughter (North Eastern) as a senior 2 yrs ago ... this year I have her son.

It's texts like these that make me smile....

When I returned to my classroom after being sick for two days, I found a zebra sitting on this photo of a grad whom I still mentor on a weekly basis. My current students must have put it there! (Zebras = symbol for Carcinoid cancer).. on the right is a recent trip to Annamaria's home so I could visit with "momma"

This comment (on a recent Instgram photo my sister took of me) is from one of my students whom I had for Jr and Sr year... he and his best friend Kalyn recently told me, "we miss you like a child misses his mother" - such wonderful kids

IKEA Debacle

The Look of IKEA Defeat

It just so happened that my two best friends, Mike and Rob, moved in together this summer, around the same time that I moved into my own studio. IKEA sells cheap furniture, so between the three of us, we have made a dozen trips over the past few months to this "some assembly required" (aka "build it yourself") furniture mecca.

Despite July being eaten away by hospital visits and doctor appointments, my apartment has been steadily coming along. Recently, Mike and I decided it was time I get a couch and a kitchen island; so off to IKEA we went... a routine as familiar as putting on your shoes before walking out the door.

By now, we have visited IKEA so often that we could probably draw a detailed architectural blueprint of the store from memory. We were able to quickly locate the three items we wanted: sleeper couch, kitchen island, kitchen stools, and masterfully found the corresponding boxes in the warehouse... after which, we followed the usual steps:

STEP ONE: Load everything into the car

STEP TWO: Spend 2 hours trying to put together an item that should theoretically take 15 min.to assemble

PROBLEM: Everything was going according to plan, but as Murphy's Law states: "If everything seems to be going well, you have obviously overlooked something."

Once Mike fully assembled the couch, we realized it was factory defective. Mike had the exact same couch in college - so he recognized the issue right away... the factory had sewn the cushions on inside out. What are the odds that we picked probably the only defective box in the warehouse? Mike then spent the next 30 min on hold for customer service to report the problem.

STEP THREE: Listen to non-soothing elevator music while trying to reach customer service

After a recent trip to the shore, Mike and I somehow managed to reload the couch (fully assembled) back into his car, and he and Rob returned it. Of course, IKEA doesn't currently have the couch in stock - so we are non-anxiously awaiting a new shipment so that we can repeat this entire process again (minus the defect of course).

Any other friend would have given up on me and my unfathomable bad luck by now - thank goodness Mike isn't like any other friend.

"Pee in this Jug" and Other Medical Updates

My Friend Mike's Abstract Photo Interpretation of Our Series of Doctor Visits

I just had follow ups with my GI specialist (Dr. Chamberlain) at St. Barbabas Hospital, and with my Internal Medicine specialist (Dr. Totaro). Both Dr. Totaro and Dr. Chamberlain ran blood work.

GI Specialist

Dr. Chamberlain said that if the Valium and Bentyl combination was controlling my intestinal spasms - just stay on them (forever if need be). I sheepishly told him that I had been supplimenting Advil for the Valium because I wanted to be able to drive, but it really didn't help the pain. Dr. Chamberlain reassured me that it was ok to drive on the Valium, and that my body would adjust.

So far so good; the drugs have kept my abdominal pain at a minimum, and being able to drive again has given me most of my independence back. I take my med combo every 6-7 hours.

Internal Medicine Specialist 

When I initially met with Dr. Totaro and explained my symptoms, including thrush  - he said, "well when I hear someone say 'thrush', I immediately think HIV. We better test for that."

Now, I didn't really think there was any real risk of me having HIV (I've only had a few long term partners); but I grew up in the 1980s and watched two friends die from AIDS in the 90s. Sadly, one of my current friends is HIV positive... living with AIDS and HIV is a lonely, painful existence since patients are forced to deal with both the relentless symptoms as well as the social stigma of the disease.

Truth be told, there is nothing medically scarier for me than HIV, and hearing Dr. Totaro suggest it as a possibility was a little like watching Jaws 6 times in a row and then going for a midnight swim in the ocean.

Luckily, the HIV test was negative.

The blood work also eliminated Systematic Lupus, Lymphoma, and Pernicious Anemia. Yet, it didn't reveal a cause for my muscle atrophy, shaking, bone pain, and weight loss (20 lbs since May). Additionally, a comparison of my labs over the course of the last two years revealed that I have become steadily and increasingly more anemic - despite having regular iron levels and a normal B12 count. There is absolutely no explanation for the anemia, nor for some of the other blood abnormalities on the reports.

Dr. Totaro wants me to see a Hematologist. His thought is that if we can figure out what is causing the blood abnormalities and unexplainable anemia, we might be able to find the cause for my other symptoms and declining health.

5-HIAA Test Results - Carcinoid Syndrome

When we realized that it wasn't the cancer causing this latest - and most pressing - health decline, I admittedly began to ignore the Carcinoid. "Why chase two illusive dragons at once?" I thought - one was enough.

Except there was the infamous 5-HIAA test - first ordered this past June - which I still had yet to complete. The 5-HIAA test is a 24 hour urine collection in a bucket:

The 5-HIAA is standard in the Carcinoid world for helping diagnose malignancy and Carcinoid syndrome. It really should have been ordered over a year ago, but that's of little consequence now.

In order to limit the chance of a false positive on the test, I had to stop Valium and avoid certain foods (plums, pineapples, bananas, eggplant, tomatoes, avocados and walnuts) both prior to and during the collection - which I did dutifully.

I just got the test results: the normal range is 0.0-14.9 .. mine was flagged "high" at 17.3. It probably is nothing serious, but I can't be irresponsible either. Dr. Woltering suggested a Carcinoid specialist on Long Island whom I'll investigate.

So What It All Means....

In my first meeting with Dr. Totaro, he summarized my medical condition perfectly; he simply said, "You're a complicated little girl aren't you."

My body is at war with itself, but no one knows why.  There are objective signs, symptoms and labs that just make no medical sense. It's one doctor after another, and when I wake up it's a question of what hurts, and how much. Not having a "name" nor diagnosis for what's doing this to me is probably the most frustrating thing of all.

In Romeo and Juliet, Mercutio described his fatal wound to his best friend this way: "Tis not so deep as a well, nor so wide as a church door, but 'tis enough, 'twill serve."

I am grateful for the health I have. I am appreciative that I can sit in this beautiful French bistro and type this blog. But the psychological toll of feeling like an unwanted stranger in your own body 'tis enough, t'will serve as one of the hardest aspects of conquering my latest medical mystery. Over this past summer especially, I have discovered that my greatest defense against this foreign, unknown enemy is the love and support of my friends and family - who are always at the ready for whatever new medical bombshells get thrown my way.