Monday, December 17, 2012

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.

Saturday, September 29, 2012

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

Saturday, September 1, 2012

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 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.

Friday, August 24, 2012

"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.

Tuesday, August 14, 2012

Fashion Forward

"Fashion is not something that exists in dresses only. Fashion is in the sky, in the street, fashion has to do with ideas, the way we live, what is happening" - Coco Chanel 

I've lost weight. Usually every woman would turn green with envy at that statement... but not when it's part of a "constellation of weird symptoms" of an unknown illness. It's been hard to be independent because of the pain, and it's even harder to drag yourself out of your apartment when literally you have nothing to wear.

Enter two of my amazing students - Cody and Sam - who were both in my 12th grade World Literature Honors course last year. Last week, they became my personal shoppers for the day. We ravaged "Forever 21" as they grabbed dozens of clothes from the racks, and then stood patiently outside the dressing room as I tried on dress, after dress, after dress. We got some good finds, and then I treated them to a post-shopping dinner at California Pizza Kitchen.

Chipotle Chicken Pizza: spicy chipotle sauce, chicken, mild chilies, mozzarella and enchilado cheese - topped with roasted corn, black bean salsa, cilantro and lime cream sauce. GENIUS!

The day made me feel "normal" again...  as my friend Joe told me, "You gotta get out in the world... you can't just feel like an ugly pair of shoes shoved in the back of the closet." Just picking out some clothes for the upcoming school year, and doling out relationship advice to my girls, made me feel more determined than ever to get well enough to return to teaching this fall.

When I was in Sloan Kettering for the week after surgery, I participated in a patient "make over" by "Look Good... Feel Better", which is an organization dedicated to helping women with cancer feel better about their physical appearance. Their philosophy is simple: a woman's self-esteem is ravaged by disease, and by helping women feel better about how they look, patients feel more hopeful in all aspects of their fight. This may at first sound vain, but there is real science behind it supporting the organization's mission. My little mall make-over did exactly that for me - made me more hopeful.

So a special thank you to my girls for not only helping me feel better about how I look, but for also helping boost my determination that I will be able to get back to doing what I love most - helping my students in their own journeys - using literature as a vehicle for self exploration.

Monday, August 6, 2012

Starting Over

My friend Mike took me for an epic bowl of seafood pasta at Biggies Clam Bar in NJ 
(My friends are making sure I keep my weight up ... Lost 15 lbs in last 2 months)

Firstly, thank you all so much for the emails and concern. I haven't been updating my blog because it seemed as if there was just too much to say...

I was in the hospital 5 times in July - four ER trips and one scheduled surgery. After the last blog, Rob (aka Batman) and I ended up going down to Robert Wood Johnson ER - and there we at least got a few answers.

As I was having a pain spike - the medical resident recognized it immediately:

"Have you ever had a charlie-horse?" The young doctor asked. (um ... I played competitive soccer so yea)

"Sure" I replied.

"Well you're having intestinal spasms - it's like a charlie-horse in your intestines" he explained.

While he was able to identify the issue he had no idea as to its cause.

He put me on Bentyl and Valium and the pain is under control. I saw a GI specialist who ordered more tests, and I see a top Internist tomorrow to try to figure out all the non-carcinoid related symptoms I've been having (pain, bruising, exhaustion, weight loss, weakness, low grade fevers, muscle spasms - I even developed thrush a couple weeks ago).

On top of all of this Gary - my partner of 5 years - and I separated, and I moved into my own studio in June. So I find myself back at the start - in all aspects if life.

I feel like an unwelcome visitor in my own body, and my new place doesn't feel like home yet - despite the heroic efforts of my amazing friends, and countless trips to IKEA.

On a positive note, my surgery (uterine polypectomy) went very well, and we are confident the biopsy will come back just fine. It's the mystery of why I'm still so sick that's the lurking ghost.

They estimate that I had Carcinoid Cancer for 5-6 years - the last year is when it broke through the appendix and was "accidentally" found during another surgery - and initially diagnosed as recurring appendicitis. I love looking at the MRI and CT reports that were done 2 weeks before they found the 3 cm tumor. Both reports say "appendix appears unremarkable". Luckily for me, my surgeon thought differently.

As Dr. Kulke (Carcinoid expert) told us - the "good news" is if my cancer has metastasized in my blood - which can't ever be ruled out - "it will eventually present itself" ie there will be more tumors.

But now there's a new unknown. How many years before this medical mystery is solved?

Carcinoid is rare, and nobody - not even doctors, really understand its true nature... But at least I had a name for what I thought was shutting my body down. Now, there's just more unanswered questions. I'm hoping tomorrow's doctor visit will bring us closer to some answers. I just need to keep moving forward.

- Posted using BlogPress from my iPhone

Monday, July 23, 2012

Advice from West Point Grad (my dad)

"In the infantry it was always about improving your position. You didn't need to win the next day - you just had to be in a better position than you were the day before ...

We all live in a world of uncertainty - yours is just a lot more uncertain than most." - dad

1975 - Army Base in Washington

Sunday, July 8, 2012

Egads! To the ER Batman

"You never know how strong you are until 
being strong is the only choice you have."

These last five days have been rather trying for me. I have spent about fifteen hours in a local hospital for what they call "pain management"- which is an oxymoron.

This all started Monday night. After visiting a friend for a dinner party, I was struck with severe abdominal pain. I tried like always to do it on my own and tough it out, but around 7 pm the next day I realized I needed help.

My two best friends - the best guys you could ever ask for- rushed to my aid like Batman and Robin (with Robin throwing everything he could find, including a Yankees jersey, into an emergency overnight bag).

My first visit to the ER went as smoothly as a warm barium shake before a CT scan. Of course the first question was,"on a scale from 1-10 what level is your pain at?" In my mind I visualized those stupid smiley faces that progressively become more contorted with each level. Frankly jabbing the nurse in the eye with her pen would have been a better description of my pain.

Confidently I replied "9ish."

They started an I.V. line, and the night nurse Jess proceeded to tell me "you must be one of the most stubborn people to let the pain get this bad." It took three shots of increasingly stronger pain medication to bring me to a comfortable level. I was then a victim of the infamous doctor shift change leading me to leave without pain medication that were recommended by doctor #1.

Since I despise pain medication I knew I had squirreled away over 100 pain pills at my house, so we didn't wait around for doctor #2 to catch the mistake. (After all it was already 4:45 am.)

Thankfully, Batman and Robin's secret underground lair  -AKA shity apartment- was just around the corner from the hospital.

My "Heros" took turns watching over me and pumping me full of pain pills to keep my "smiley face scale" as far away from "9ish" as possible.

The next two days were better, but only marginally. My pain level had moved down to a four and spiking to a six, but episodes were further apart. My shining moment was when the boys made me Pastina with butter and salt, my favorite comfort food from my childhood.

Wendsday night things got bad again. At about midnight, we as a team sat down to discuss another trip to the hospital. Against my vehement protests, and a three year old type tantrum (ending with Batman carrying me over his shoulder back to the Batcave) we set off to the hospital...again.

This time no I.V. and fairly little concern for my "pain management." However Jess, my first nurse, did show how amazing people can be by coming over and checking in on my well being both mentally and physical. Again I was discharged without pain medication by a doctor with the bedside manner of a boar.

Back to the Batcave!!!

The next two days were filled with more pain pills and less episodes. I began to eat again, but I began to get more pain and soreness in my extremities. (The upside though - apparently the 4th of July fireworks look much better on OxyContin.)

Last night I woke up feeling my normal pain and a new puzzling sensation that felt like battery acid was flowing through my arm. After a stage of sheer panic, I began applying ice to ease the burning - but to no avail.

So I did what I thought was the responsible thing: I activated the Batphone, drove myself to the Batcave, Batman climbed in, and we drove to the ER for the third time.

Upon entry I had an overwhelming feeling that this was going to be a "prototypical ER trip" for a Zebra. I was not givin an IV and was stowed away in a corner of the ER. My nurse instantly sent over the doctor after we deluged her with the recent happenings. From the doctors first moronic comment "why are you crying? I don't understand" I began to shut down mentally.

I explained my symptoms and my last two ER visits, and of course said I had Carcinoid Cancer. She took Dr. Nash's number at Sloan Kettering and abruptly left. Ten minutes later she came back with the tone of an annoyed school principal. "I talked to a nurse who had your records. You do not have cancer. You had a 3cm tumor that was removed and there is no more cancer in your body..." Even at my interjections she raised her volume and spoke over me.

Since she denied me the opportunity to breath no less explain my medical history, I'll say what she should have heard here.…

I know how big my tumor was, and I am grateful they haven't found additional tumors since my hemicolectomy.…however, there is an ongoing dispute amongst Sloan doctors and other members of my medical team whether or not I have Carcinoid Syndrome, which would mean distant METS without local lymph spread. (For details on this topic just hit "Carcinoid" on my label section)

I was not going to explain the complexity of staging and diagnosis of a rare cancer to a woman who was practically screaming at me that she "knew the real story." Bottom line I was writhing in pain which she completly dismissed and deemed as grounds for discharge.

After a shot in my arm and a warning I was no longer able to receive treatment for "pain" at the ER, Batman carried me to the car because of my inability to walk.

Now I had no idea whether or not it was the Carcinoid but since it presents such a "weird constellation" of symptoms it seemed like it might be a viable cause of the pain. So I called Doctor Woltering in LA to discuss whether or not the Carcinoid syndrome could be the cause of this latest setback.

For non Zebras out there, Woltering is one of the only experts in Carcinoid and gives his cell phone to all Carcinoid patients. He picked up on the second ring.

After a short discussion, he affirmed that the Carcinoid Syndrom was NOT the cause of this pain. I believe him. (He also rattled off the list of tests and treatments I should consider at other oncological centers.)

So where does that leave me and my Caped Crusaders?

At the start of a new and exciting episode. You would think I would be happy that it's most likely not related to the Carcinoid, but for anyone who has gone through dealing with a rare disease, the thought of hunting down a new, mysterious villain seemed crippling.

Sitting here now, however, I realize that even though these last days have been full of pain and frustration, knowing I have my dynamic duo at my side and a supportive cyber Carcinoid community to rely on - I feel like I have the will to carry on, and the fight in me to keep moving forward... even when I can't reach my Batsignal.

*Special thanks to Batman for typing this all for me.

Saturday, July 7, 2012

Visiting Hemingway's House in Key West

Hemingway drank and wrote about whales; Ginsberg tripped and wrote about God. Same thing.

Wednesday, June 13, 2012

Shore Musings

View from Our Shore House Deck
This past weekend, I took my 89 year-old grandmother to her beloved second home at the Jersey shore. Our shore house has served as a family gathering place for the past 23-years, and despite two decades of family changes (divorces and marriages, deaths and births, losses and hopes) our little house on the bay has remained a safe haven - a respite from our troubles.

Last summer was filled with hospitals and worry. My grandmother had major heart surgery, and there was a strong likelihood that she would not survive the operation. The fact that she and I were able to sit side-by-side at the Ocean together - finding joint solace in the rhythmic tide - was one of the greatest blessings in my life.

6/9/12: First Time My Grandmother Has Seen the Ocean in 5 years
Whenever I'm at the beach, I make it a point to go for a run with my soccer ball. Soccer was my way out as a kid; it kept me on a road toward college and away from a dark path filled with devastatingly bad choices. This past weekend I was able to push myself to complete a 3-mile sprint work out in the soft sand. It felt good - and then it hurt like crazy. 

"The ball is round. The game lasts 90 minutes. This is fact - everything else is pure theory." - Sepp Herberger 

When I was first diagnosed with cancer, Gary bought me new cleats and a soccer ball as motivation. Everything is different now.

This Thursday is another CT scan and Dr. Nash appointment, but for the first time Gary's not going to be there. I have a new life and new friends who are helping me pick up the pieces, but I'm tired of always being tattered. I just want to be that strong girl again, with a wicked left shot - full of fire and anger. I feel like I'm always chasing the ball, but just can't seem to get it under control.

I know these emotions are "normal" and probably even healthy to an extent. Thursday will come and go. It really doesn't matter what they find or don't find... there's always another underdog match around the corner.

Christopher Reeves said "either you decide to stay in the shallow end of the pool or you go out into the Ocean." I guess I'm trying to build up the courage to wade out into the terrifying awe of truly living again.

Sunday, May 20, 2012

15 Things

Sunday, May 13, 2012

Birthday Wish for Myself

I have been neglecting things.

My writing, my students, my friends, my family - they have all managed to slip just beyond my outstretched fingertips...

I wish I could  tell you why. But I can't.

Sometimes I feel like I hear a kitchen timer in my heart, ticking down the days - hours - seconds until my next surgery (which has been scheduled for July), or my next MRI or CT or TVU - or any other medical acronym that brings with it paper gowns and poisoned injections.

My baby sister is becoming a doctor. She has finished 2 years of medical school and is studying for the boards. Tomorrow, her big sister turns 38 and I'm still sick.

I wish I could be positive. But I can't.

Sometimes you grow tired of having to see "the bright side" of things all the time, and just want people to let you sit quietly alone in the rain. Teachers and cancer survivors don't really get to have bad days ...  people tend to look to them for reassurances that their own lives will turn out fine. It's a role I'm usually very proud of, and pretty good at... but not lately.

I know that it is important to actually go through things - not just around them. Guess I'm just trying to get through things the best I know how.

Joseph Campbell said "Life is without meaning. You bring meaning to it. The meaning of life is whatever you ascribe it to be. Being alive is the meaning." The fact that I can take a breath on my 38th birthday is in some ways the biggest testament to my life and it's meaning. So my wish for myself is to breath a little more deeply and little more peacefully in the future.

Sunday, April 29, 2012

2 Year Anniversary

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." - Bloom

Friday, April 27, was the two year anniversary of my cancer diagnosis. I always hear people talk about cancer as a "journey" - but ultimately it is one walked alone. I remember trying to decide whether I should have my hemicolectomy surgery at the NJ Cancer Center or at Sloan Kettering. It was agonizing, and the only topic of family discussions for a solid two weeks.

Finally, my mom took me aside and said, "You know that you have our love and support, and we can keep going over the pros and cons of each center for as long as you need - but ultimately, when you are lying on that table, it's going to be just you and the doctor; nobody else. You can't doubt your choice."

My younger body was riddled with scars. Most of them are now more than 20 years old, and have faded so much that they are barely noticeable to the naked eye...  reduced to an existence sitting on a shelf in the hazy halls of dark memories. Once in a while, I find myself wandering those halls - remembering cigarette burns and black eyes - and marvel at my tenacity for finding a way out. I've never been ashamed of my past, nor have I ever felt sorry for myself... it is simply part of my life's story; nothing more, nothing less.

Now my body has a new scar. It's a strange alien like thumbprint above my bellybutton - where they put the surgical port in that took half my intestines and lymph nodes out. It's a reminder of how my body was taken from me for a while. I still haven't gotten it all back, but I'm making progress.

I'm eating, running outside, and even took my first spin class in 3 years. My body is starting to look healthy again - except for that alien scar. To an outsider, the scar may not seem like much - but for me, it has some strange mystical power ... making me forget the strength I once had. As Humpty Dumpty told Alice, when it comes down to it, the question is: which is to be the master - the cancer or me - that's all.

Wednesday, April 18, 2012

Home from China

We got back from China on Sunday. 

I couldn't post while I was overseas because blogger - like many other social media sites - is blocked by the Chinese government. I really want to share some of my incredible experiences, but quite frankly I'm too darn tired. (I'm still adjusting to a 12 hour time difference.)  For now, I'll  just post a few of my pictures in order to preview some future posts on the history, cuisine and culture of China.

We saw such historical structures as The Great Wall (above) and Terracotta Warriors.

We were able to sample some traditionally authentic Chinese food - jellyfish and all.

We also got to chuckle at some of the extraordinarily awkward translations... like this one - a donation box at the airport labelled: "Shanghai Workers Foundation for Assisting the Difficult" 

Thursday, April 5, 2012

Zaoshang Hao

Good morning from Newark Int Airport! Gary and I are about to embark on the adventure of a lifetime - 11 days in China.We have already hit a few minor snags:

* On Monday Gary found out that he needed a root canal or his tooth might explode in-flight. He got some emergency work done yesterday.

* We got to the airport and Gary had no seat. That's since been resolved.

* I had a minor setback with my walking pneumonia, but the steroids seem to be keeping it under control.

But otherwise we seem pretty ready: we put travel notices on our bank and credit cards; got a charger and dissolving caffeine strips (coffee isn't common where we are going); and saw our doctor who prescribed antibiotics in case we get sick.

We also exchanged $140 for 800 Yuan.

Next stop Beijing.

- Posted using BlogPress from my iPhone

Sunday, April 1, 2012

In Memory of Rachel

Rachel Cheetham Moro (1970-2012)
“When I first started my blog in 2009, I had no idea just how important it would become in helping me deal with this disease. What has surprised me even more is just how many people are interested in what I have to say." - blogger Rachel Moro

I have heard people call the act of blogging a way to share your unedited self with the world.  "A blog is a personal diary. A daily pulpit. A collaborative space. A political soapbox. A breaking-news outlet. A collection of links. Your own private thoughts. Memos to the world." (

For me, Channeling Jackie-O was initially a way to share information about my rare cancer with my family and friends in California, but eventually it became much more - a way for me to connect with other cancer patients and advocates. I am incredibly grateful for the amazing online community support that my blog has provided me, and for the new friends I've made through my writing.

One of my blogger-friends, Rachel, recently died from stage IV breast cancer. And I miss her.

I miss her comments to my posts, and reading her incredible words - her "unedited self" - that she was able to share so eloquently with the world.

On December 31st Rachel posted a comment to my blog about the Laurita Winery: "Definitely going to have to check this place out! - Rachel" After reading her comment, I had thoughts of us finally meeting face to face - two Jersey girls, swapping encouragement and stories over a bottle of Chardonnay.

Rachel died Monday, February 6th, and there is an aching sadness that I will never have the opportunity to meet her in person; she was only 42 years old.

Rachel was brave and talented, and like all great writers, she was a keen observer of life. As a young women twice diagnosed with breast cancer, Rachel was unabashedly critical of the "pink pop-culture" movement. Through her blog, The Cancer Culture Chronicles, she challenged her readers to move beyond pretty pink ribbons and balloons, and take a long hard look at the ugly truth about metastatic breast cancer, which has somehow gotten buried underneath mountains of pink glitter.

Rachel was an intellectual powerhouse at crunching numbers and calling out the foremost cancer organizations for not doing more (especially Susan G Komen Foundation - see Rachel's post "Komen by the Numbers"). But what I loved most about reading Rachel's blog was her dark humor about the daily absurdities of living in "cancer world" as a permanent resident - rather than as a tourist merely passing through during a charitable bike race or 10k run.

If you like my blog, you'll love Rachel's; below is an excerpt from one of her posts "Pink Proxy". My heart goes out to her beloved husband Anthony, to her friends and family, and to her extended "blogosphere family" - whom she touched through her honesty, wit, spirit, and unique outlook on life.

I've never been very good at goodbyes, so I'll let Shakespeare do it for me: "Now cracks a noble heart. Good night, sweet [friend], and flights of angels sing thee to thy rest." (Hamlet)

"Indeed, the writing does send out tentacles that demand to be heard and invariably evoke a response and hopefully a call to action of some kind. We must keep writing to keep being heard. It is imperative" - Rachel

From "Pink Proxy" - Cancer Culture Chronicles, Nov. 7,  2011
by Rachel May Cheetham Moro (

"...Then the news. You have a pneumothorax (partial collapsed lung) and we're taking you down to the emergency room now. Great. Here we go again. Cue the waterworks.

Pull up to emergency room desk. Me in my wheelchair sobbing. Radiology nurse clucking attentively. Emergency room desk receptionist dressed in bright pink breast cancer awareness sweatshirt and pink ribbon lanyard. Rather than taking pity on me, as I would have expected from someone who was so aware of breast cancer, and on the last day of Pinktober no less, the bitch (it's the only fitting descriptor) couldn't have cared less, and rudely waved us on to the next receptionist.

It was at this point that I stopped crying, and almost burst out laughing at the irony of the scene.  Has the color pink simply become a proxy for giving a shit? Wasn't I the point of her stupid sweatshirt? Wasn't I entitled to some special pink treatment during my special pink month? What's the point of having breast cancer if you can't jump the ER queue at least because someone's AWARE of you? Perhaps it was my fault. Maybe my chart wasn't clear enough. More the fool me for forgetting to wear my pink feather boa, bedazzled pink fedora, and Fight Like A Girl t-shirt.  End facetiousness..."

Some of My Favorite Posts by Rachel

Pink Fall (9/19/09)

Wednesday, March 28, 2012

It's Elementary My Dear Watson

 HAL: Look Dave, I can see you're really upset about this. I honestly think you ought to sit down calmly, take a stress pill, and think things over.  - 2001 A Space Odyssey [on Dave's return to the ship, after HAL has killed the rest of the crew]

I came across this article recently, about how the IBM supercomputer Watson was moving on from its dazzling stint on "Jeopardy!" to diagnosing cancer at Sloan Kettering Cancer Center.

While the concept of having a supercomputer helping some of the most talented doctors in the world treat cancer patients is an exciting prospect, it's also a bit disturbing to think that someday metal and bolts may usurp a doctor's unique insight in cancer care.


There are nuances in a patient's voice when describing symptoms, or realities in a patient's priorities (such as living long enough to see a child born) that simply "do not compute" when looked at as a sterile set of facts.

Already there is talk of having Watson go to bat for the insurance companies - which makes me even more wary of its place in the medical world and the level of care I might someday be restricted to based on a computer's logarithms rather than a doctor's intuition. Remember that CT and MRI scans all missed my cancer for years - it was my surgeon's gut that told her something wasn't right with my appendix (where my carcinoid was) that saved my life.

It's undeniable that for rare cancers like carcinoid Watson could be an unbelievable asset; but it's important to keep things in perspective and realize that this latest supercomputer is only a resource for experts to use and not an expert in its own right... otherwise Watson may just morph into HAL. And Dave, nobody wants that.

Read the Article: IBM's Watson Supercomputer Gets Job As Oncologist at Memorial Sloan-Kettering Cancer Center

Sunday, March 25, 2012

Cancer and PTSD

"Nothing fixes a thing so intensely in the memory as the wish to forget it." - Michel de Montaigne

My seniors have started my favorite novel of the year: One Flew Over the Cuckoo's Nest. (If you haven't read it, do so immediately if not sooner.) The narrative is told from the perspective of Chief, who is a paranoid schizophrenic - institutionalized in a psych ward in the early 1960s.

As part of the unit we go over various mental illnesses including Post Traumatic Stress Disorder (PTSD), which is generally defined as an anxiety disorder that a person can develop after experiencing or seeing a life-threatening or extremely frightening event. As I was reading my notes on PTSD I began wondering if those who survived cancer could develop the disorder.

Sure enough, I found several articles explaining that cancer patients (and their caregivers) are at risk for developing PTSD - especially if they had long hospital stays, cancer recurrences, or painful treatments. One of the most interesting pieces of information I found explained what are called "protective factors" - or variables that decrease a cancer patient's risk for developing PTSD, which include increased social support, accurate information about the stage of cancer, and a satisfactory relationship with their medical team.

I survived severe trauma as a child and young adult, which is probably why I never reacted negatively to my cancer diagnosis. People thought I was so brave - handling my surgeries so nonchalantly, but really it was probably just a coping mechanism I'd developed from a very young age... avoiding the reality of the danger by burying it.

I don't think any cancer patient ever forgets the reality that the cancer could come back. My doctors all tell me not to worry, but I continually hear stories identical to mine (carcinoid in the appendix, followed by a totally clean right hemicolectomy) that end with mets in the liver.  Sometimes I feel stuck and don't want to plan too far into the future just in case it returns. That's no way to live - it's like you're constantly sitting on the edge of your seat in a horror movie as the score crescendos, right before the dumb girl goes to "check out a noise" in the basement... where the killer lurks.

There is a  NJ carcinoid support group that has been on my radar for a while. Perhaps I should make it a priority to go.

Good Links: Article on Cancer and PTSD
National Cancer Institute's Article on PTSD
Breast Cancer and PTSD

Saturday, March 17, 2012

Happy St. Patrick's Day (1976)

I am half Italian and half Irish, so dressing me up in traditional Irish get-ups for St. Patrick's day was always a fun grown-up pastime in my house. My step-dad is also Irish, and the following blessing hangs in my mother's home:

Irish Luck

Ample food and sturdy drink,
A clean pillow for your head,
And my you be forty years
in heaven
B'fore the Devil knows you're dead.

Happy St. Patrick's Day to all my friends and family - wishing you the luck of the Irish now and always.

Dress from Ireland - 1976
Irish Temper and Italian Attitude = one Sassy 3-year old

My maiden name (revealed on shamrock) is Gibbons. Later we learned my father's family name was "McGibbon" before they immigrated

Tuesday, March 13, 2012

Dinner Party Cuteness

Tomorrow, our handcrafted dining room table from Vermont is scheduled to be delivered, which means that we will be (hopefully) hosting our first ever dinner party very soon. I was looking for something that would bring some whimsy to a Spring dinner with friends... and uncovered these adorable "Marshmallow Favors" from a 1965 McCall's Family Style Cookbook (thanks to Retro Kitchen) and some "Little Lamb Cupcakes" by Food Network... (Click HERE for recipe). I'm excited to try these fun ideas out -  since I think that we could all use an extra dose of cuteness in our lives these days.

Monday, March 12, 2012

Day at Balboa Park

Artist studio at Balboa Park in San Diego
Whenever I don't write a blog for a while, I always want to start out like a 13-year-old girl who has neglected her bubble-gum pink puffy-vinyl covered diary for too long (ok - like a 1980s 13-year-old):

Dear Diary,
Sorry I haven't written for so long diary. A lot has happened. 

Truth is, a lot HAS happened... not the least of which was that I finished out the rest of my wonderful vacation with my mom. One of my favorite days was the one we spent together in Babloa Park - where we ate calamari fries, meditated at the Japanese tea gardens, marveled at the Spanish colonial architecture, and took a trip to the world famous San Diego Zoo (where I got some GREAT shots of my favorite zebra pals).

Since I've been back in Jersey, I've been able to see two movies (Pina and The Artist), throw a surprise birthday party for my boyfriend, and had my yearly teaching review.

And I got sick.

So I guess all I can say is - I'm back modern-blogger-diary, and I'll try to write more often in the future.

Japanese Tea Garden at Balboa Park
One of the Many Amazing Buildings at Balboa Park

Saturday, February 25, 2012

Lenten Beauty

On Ash Wednesday I was looking for something to give up. Chocolate was out of the question - I'm a Catholic, not a martyr. So I began thinking of an alternative.

Lately, I've been struggling with vanity. Now that my cancer worries have declined, I find myself increasingly concerned about the "worry lines"on my face... I don't like the pigment changes in my skin caused by the flushing, I hate the way my clothes hang; you name something about my physical appearance and I'll tell you what's wrong with it.

Vanity: otherwise known as "pride" under the seven deadly sins, or "hubris" in ancient Greek tragedies; irrespective of what you call it - being overly caught up in your own appearance is one ugly vice. 

Then it came to me - what about giving up wearing make-up for 40 days? Wouldn't that help with this vanity thing? Wouldn't that make me be a better role model for the teenage girls I teach every day? It's not like I even wear a lot of make up to begin with - but what I do wear is corrective, so facing the world without it was such a jarring thought that it screamed Lenten sacrifice to me.

Then, I told my mom my idea. I thought she'd be all for it, but she simply responded, "Life is hard enough, why pile on more sacrifice? Why not pledge to meet the challenges you already have in your life in a more positive way, rather than creating new challenges for you to overcome?"

And my mom, a polio survivor, knows a lot about challenges and sacrifice. Her words made sense, and became even more clear as I spent the day with her at Reins Therapeutic Riding Stables - where she keeps and rides her horse Andy.

Giving Andy a Post-Ride Treat
Reins specializes in therapeutic riding for children and adults with all different types of physical and mental disabilities - and several of the stable volunteers are disabled themselves. I've been involved with the disabled community my entire life, so being at Reins is completely comfortable for me. 

Mom and Andy
Watching my mom on her horse - pretty much riding without the use of her legs - reminded me what true beauty is... it's about being comfortable in your own skin, and doing what makes you happy - irrespective of what others might think. My mother has never let her disability paralyze her in life; she's always followed her dreams. 

Whether I wear make up or not, is besides the point - it's what I chose to focus on... and for the next 40 days I'm going to do my best to celebrate the unique beauty that is mine.

Tuesday, February 21, 2012

February Break in CA

Mom's Backyard Today:
74 degrees and sunny

I'm lucky enough to be back in paradise at my mom's house in Fallbrook, CA for February break. I have spent the last couple days lounging around with our dogs and hanging out with my mom, sister, and stepdad.  Since Gary and I can't have dogs where we live... I'm really trying to soak in all the canine cuteness I can while I'm here.

My alarm clock...
Can you tell Bently stole Charlie's favorite toy?
My mom's backyard has several statues... including this little angel
Bently smelling the flowers
Lil and I picking some oranges in mom's backyard