Carcinoid Syndrome Flushing

Flushing 

Not very pretty: melted mascara; mangled brows; sour-puss expression; no foundation, cover-up, or blush of any kind. But carcinoid syndrome ain't pretty. This is tell-tale flushing (which happened while relaxing on the couch - no rhyme or reason to it). My other symptoms are on high alert too. No one likes an ugly picture of them blasted on social media, but I made a commitment to be honest about my journey.

Carcinoid Syndrome Symptoms

Flushing feels hot and uncomfortable - like an internal, tingly sunburn. It starts on my cheeks by the bridge of my nose and spreads across my face and chest in a matter of minutes. For me, it usually happens in times of stress or when eating too much sugar. Lately, however, it happens for no reason at all. (I don't drink alcohol, but many have a reaction to that as well.) It is not menopause - got tested for that. Nor is it Lupus, got tested for that too. So it's not rocket science to put carcinoid cancer and carcinoid flushing together.

In the past, doctors have remarked how "good" I look... maybe now, with photographic evidence of clear flushing - everyone can get on the same page medically. Advice for zebras: gather as much evidence of fleeting symptoms as possible - you may just look too fabulous for doctors to consider you ill!

Admittedly,other than regular Sloan Kettering appointments, I've avoided my recent follow up visits with specialists. I feel a bit guilty about it, but sometimes you feel even more sick staring at yet another set of plastic chairs and fanned magazines on a faded coffee table, waiting to be called - only for the doctor to shrug and order more needles, more tests. But now it's time to get back on track and get my symptoms under control again

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Banksy's Zebra

Often, what makes a piece of art so powerful is our own constructed meaning, rather than the artist's intentions.

Famed graffiti artist "Banksy" creates political conversations through his street art; but for me, this image of a woman washing a zebra's stripes - atop the rubbled roofs of Timbuktu, Africa - is more than an ironic statement on desert realities ... It is a reminder of the daily work it takes to keep positive and moving forward in an often deserted, unforgiving land where (on average) a carcinoid patient is screaming into the wind for 3-7 years before someone brings them an ounce of relief for the right diagnosis.

Keep on keeping on my zebra friends.

 

 

 

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Talking Zebras with Allure's Beauty Director

Jenny Bailly and I at Saks 5th Ave

Last Thursday, I met the charming deputy Beauty Director of Allure magazine, Jenny Bailly, at Saks Fifth Avenue's 3rd annual Beauty Editors Day, sponsored by "Look Good Feel Better" - an organization that provides free cosmetics and makeovers for women with cancer.

I first became involved with Look Good Feel Better as a patient at Sloan Kettering. Two days after my right hemicolectomy surgery for carcinoid cancer, my mom came into my hospital room and giddily announced: "I signed you up for a makeover! The nurse will come get you in an hour."

At the time, the last thing I wanted to do was "glam up" my hospital gown and medical tubes, but the incredibly sweet and caring beauty volunteers of Look Good Feel Better not only made me physically appear "less sick", but also gave my mom a memorable non-cancer moment with her daughter. (CLICK here for my original blog post about my hospital makeover.) It was amazing how a little mascara made me feel more like a "normal" girl and less like a walking war.

Fast forward four years.

I was flipping through Allure magazine, and stopped dead in my tracks when I saw the below editor's note:

I couldn't register fast enough.

The day of the event, I was more than nervous - after all, there is nothing about me that screams high fashion; but as soon as I met deputy Beauty Director Jenny Bailly at the Dior counter, her genuine warm welcome immediately set me at ease. I told her how special this event was for me personally, and shared my carcinoid story. I even gave her a carcinoid zebra-ribbon fashion lesson!

We continued chatting for a while and discovered that we were both English Literature majors, which took us down two similarly circuitous paths - hers leading to the beauty industry, mine to teaching. We also discussed the immense social media pressures facing today's teenage girls, and I posed a question: if she could go back in time and give her 16-yr old self some advice, what would it be?
"Don't be afraid to play. Makeup is supposed to be fun... I wish I hadn't played it so safe when I was younger." Bailly wistfully answered.

I thought that was great advice; we ran through a short list of celebrities and agreed actress Lupita Nyong’o embodies an enviable free spirit when it comes to style, and is a wonderful fashion role model.


Like Lupita, Bailly is constantantly experimenting with the latest trends and beauty advancements. She explained that as Beauty Director, she receives literally crates of products to try out. In fact, sometimes she has to "split" her face down the middle and apply different products to each side - just to get through it all.

I asked her if the job ever became tedious, and she was quick to respond, "I never get tired of it. I still love it." Then she flashed me a smile that mimicked what a kid would look like after getting a job at Willy Wonka's Chocolate Factory.

After a thoroughly delightful conversation with Bailly, I was whisked to the other side of the Dior counter for a makeover. Several of the Dior ladies said they overheard my cancer story and wanted to tell me how fabulous I looked.

Really? I don't consider myself "fashion forward". Every piece of make up I own can fit into a ziplock bag; when I force myself to get a pedicure, I correct papers so the time seems "less wasted"; the few occasions I've updated my wardrobe in the last 6 years have been primarily out of shear necessity because of weight loss...

Bailly's advice sparked an epiphany of sorts - I have been so busy putting on a brave face for others, that I had forgotten to throw on a bright red lipstick or neon green eyeliner once in a while - just for me. Bailly inspired me to finally take the time to create a personal style that makes me feel confident and feminine. After all, this blog is named after style icon Jackie-O, who captivated a nation through her signature look and seamless elegance.

Every time I share carcinoid information with people in the media, I become a little more hopeful that someday the mainstream medical community will adopt this orphan disease. In the meantime, I'm going to head over to my local Sephora and frolic among the candy colored, rainbow shades of liquids, powders and lacquers... because for the rest of the summer this girl is banning beige.

  

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The Power of Doctors' Attitudes

THIS IS MY FIRST BLOG IN MY 30 DAYS OF SUMMER PROJECT ... I WILL BE POSTING 30 BLOG ENTRIES BEFORE SEPT 30th STAY TUNED ...

     During my last CT, I forgot to take off my St. Anthony's medal, which hangs around my neck 24/7. Rookie move for such a non-rookie. The MSK nurse was so kind that she insisted on taping it to my wrist for good luck. Guess it worked because my latest scans and blood tests indicate that everything is stable. Thank God.

     Many have asked me why I continue with Sloan Kettering when the general noid community repeatedly hasn't had great success with them. That nurse's personal touch of boosting my confidence during a nerve racking procedure is the MSK difference.

      In my follow-up appointment later that day, Dr. Nash was a little flabbergasted at my lack of questions. Usually there are all kinds of painful revolts going on in my body, and I look to him to lead a forward charge against a slippery foe. He asked me if I wanted to redo my 5-HIAA test, which was a little higher last time... I declined. My weight has stayed stable and my symptoms manageable. That's the best anyone can hope for with chronic conditions. If any new tumors emerge, I'd probably go back to Dana Farber in Boston for treatment anyway. For now, I'm sticking with MSK.

     Doctors' attitudes have so much power over recovery.

     For example, my recent MSK visit was NOTHING like my ER visit at Hackensack Hospital two summers ago. My body was obviously shutting down ...I lost 25 lbs in 6 weeks and I couldn't walk. I was having uncontrollable muscle spasms, and was in so much pain that my friends couldn't bear watching me, so they took me to the local ER for help. The first two nurses were awesome. Then I got this doctor who saw my physical condition and incorrectly deduced I was a junkie in withdrawal.

     This dumb woman thought she was going to "call my bluff." Little did she know I still had 300 ... Yes 300 pills of oxycodone at home that I never touched during recovery because I'm against drugs. After my hemicolectomy surgery, nurses would push my morphine button because I refused to push it myself. They kept telling me that if I was in pain I wouldn't heal as quickly - I didn't care. I'm terrified of drugs. I've lost friends to drugs, and know their power to destroy lives. So this ER doctor couldn't have been more wrong.

     I told her I had Carcinoid and she asked for MSK's number. 10 min later she returned - with her back to me she announced to my friends, who were holding my hand, that I was a liar. My cancer was cured and there was nothing wrong with me. She smiled at me when they gasped in disbelief.

     She didn't even talk to Rachel or Dr Nash - she had some random person look at my chart that showed no new tumor growth. In her opinion, that meant no cancer. Carcinoid is often chronic, and many sufferers never even have their tumors found at all. MSK and Dana Farber both have in my charts that they "can't rule out" Carcinoid syndrome due to symptoms and initial tumor size. Cancer Centers of Hackensack has a positive diagnosis of Carcinoid Syndrome, as does my GP and dermatologist (who recognized my tell tale flushing during one of my visits - and controls flushing, as well as the swelling in my legs and arms with Spironolactone... He has other carcinoid patients he treats similarly. It works. Click here for an article about Spirolactone and Carcinoid Syndrome). Carcinoid is complex, and this simpleton ER doctor put her ego trip over an obviously suffering patient.

     Thank goodness I had Dr. Woltering's cell number, which he makes available to the Carcinoid community because of the general lack of knowledge in the medical field about this rare disease. Dr. Woltering calmed my friends and myself down as we drove - me writhing in pain - to RWJ, where I was first diagnosed. RWJ took care of me - turns out that in addition to muscle spasms in my legs and arms, I was also having intestinal spasms - the equivalent of a massive charlie horse in your stomach - every 10 min. They too explained Carcinoid syndrome to my friends, and we were again on the right track with new medicine.

     After the visit to the Hackensack ER, I was seconds away from giving up and having others give up on me too. Who knows how much weaker I would have gotten if I had let that ER doctor get to me. Thousands of Carcinoid patients face this reality every day, which is why most carcinoid patients are treated 3-7 years for the wrong disease allowing for the cancer to spread.

     Luckily for me, my friends know of my drug phobia and that I always downplay my pain ... So instinctively they knew the ER doctor was full of shit. With Dr. Woltering's and RWJ's sound advice, we kept hunting for answers. 

     For all the Carcinoid patients and caregivers out there - be your own toughest advocate. Don't let doctors bully you. They estimate my cancer went unnoticed for 5-6 years ... Partly because I didn't push for help until the symptoms were unbareable. Stay connected, stay positive and stay strong.

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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.

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

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

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.

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.

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.

"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.

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.

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.

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.

Watson

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

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:
Cancer.net Article on Cancer and PTSD
National Cancer Institute's Article on PTSD
Breast Cancer and PTSD

WNCAD Wrap Up: 2011

Christmas break means time to catch up... and I finally was able to mail off the 2011 Worldwide Net Cancer Awareness Day (WNCAD) signed proclamations to Grace Goldstein at the Carcinoid Cancer Foundation.

WNCAD: November 10th

Our students at Paramus Catholic High School were able to gather 959 signatures in one day (which is 167 more signatures than last year!) Also, our school newspaper, The Paladin Press, featured an article about carcinoid cancer as well as a student poem in honor of WNCAD. Even the varsity members of my mock trial team showed off their zebra striped bracelets during weekly practice. When WNCAD was over, students wanted to do more - and have already started planning for NET Cancer Day next year.

Additionally, one of my seniors who graduated last year delivered a presentation to her public speaking class at St. John's University on November 10th about carcinoid cancer, and had students from the course sign the WNCAD proclamation.

Overall, it was a tremendous student display of support and empathy - far from the lackadaisical, morally adrift stereotype many people have of today's teens.

The Paladin Cancer Awareness Club gathered signatures and passed out information about carcinoid cancer on Nov. 10, 2011

Some members of my Mock Trial team, showing off their stripes...

PC's paper featured an article and poem about carcinoid

NET Cancer Awareness Day Poem

by Selena Hart

Behind the trees, you hear them.

A soft pat against the dirt

a calm stride to the pool of blue.

You picture a strong, bold steed

a mane of gold, a sandy body.

You ready yourself to tame it.

To saddle it and ride away.

You breathe in, and push through the trees.

Stunningly enough, the mane you saw as gold

is black as coal.

His sandy body is quite the contrast,

stripes as black as ash and white as snow.

Your shock has stunned him too.

As he runs, you learn something new.

The next time you hear hooves,

it could be a zebra.

New Doctor - New Diagnosis

I don't have carcinoid syndrome.

At least that is what the oncologists at Sloan Kettering (Dr. Reidy) and Dana-Farber (Dr. Kulke) said. Well, one dermatologist in Morristown, NJ disagrees with them.

This past month, in addition to increased pain and my usual flushing, fevers, night sweats and nausea - my face broke out with deep, painful welt-like cysts. (Thanks body - you're really on a roll.) At first, I tried to ignore it - angry at myself for being so vain. No matter how I tried to "get over it" however, the new acne made me depressed... which in turn made me feel even more like a narcissist and less like a strong cancer survivor. I decided that there was only one thing to do. Get a dermatologist.

I had been putting off seeing a dermatologist for awhile - Dr. Nash had suggested back in September that I seek one out for an alternative explanation for my "hot rashes" ... ( I began calling them "hot rashes" instead of flushing after Dr. Nash and Dr. Reidy assured me that it was highly unlikely that I had carcinoid syndrome.)

I did a lot of research, and found one of the most respected dermatologists in the state: Dr. Robert Marinaro.

As soon as I met Dr. Marinaro, I liked him immediately. I explained that I had been diagnosed with carcinoid cancer about 15 months ago, but that my tumor was surgically removed, and that my doctors were pretty confident that I don't have carcinoid syndrome. I explained that I wanted to discuss possible alternative causes for these "rashes" I was getting, as well as figure out a treatment for my cystic acne.

I was expecting him to ask me what carcinoid cancer was; he didn't have to - he knew. Over the next 45 minutes, he asked all the right questions, including what my 5-H1AA levels were (normal) and did I have bouts of diarrhea (no, because I have nerve damage from the resectioning of my colon). After an extensive dialogue about my condition, I was preparing for him to say either 1. he had no clue as to the underlying cause of my symptoms, or 2. I had some sort of an autoimmune disease, like Lupus or Hashimoto's disease.

"I think you have carcinoid syndrome" Dr. Marinaro said, without a hint of hesitation.
"But the doctors all say I don't" I replied.
"Yes, I know - but what you are describing is carcinoid flushing; I think it's carcinoid syndrome."

He went on to explain that if he had to guess, my body was just overly sensitive, and while the increased serotonin wasn't enough to spike my blood work - my overly sensitive system was reacting to the fluctuation as if the levels were highly elevated.

This explanation makes total sense. To say my body is "sensitive" is the biggest understatement of the decade. I can't tell you how many times a doctor has said "there's almost no risk to this - I see no likelihood of any complications" only for my body to prove them wrong, time and time again.

Dr. Marinaro proposed a new treatment for the cystic acne that was an "interesting option" for someone with carcinoid syndrome - a daily dose of 100 mg of Spironolactone, which is primarily used to treat high blood pressure (my blood pressure is on the low side 90/60), but can also be used to treat a hormone (aldosterone) imbalance.

I started the medication, and while I'm a little paranoid about some of the side effects - so far so good. My skin already looks and feels a lot better, and while I haven't noticed any changes in any of my other symptoms, I guess we will just need to give the medicine a little bit longer to kick in before I can really evaluate it. My next priority is to find a good endocrinologist and reschedule my heart stress test.

Update Dec 16th

My skin is miraculously healing and clearing on the new medication. My fevers and night sweats are still rampant, as is some flushing, but my energy level is much better - even though the nausea is back with vengeance. But hey, I'll take clearer skin and more energy for now!

I got the name of a few endocrinologists from the ACOR board - none of whom take my insurance. I did finally find one doctor in Hackensack with my insurance - I'm calling her, and the cardiologist, on Monday.

Medical Time Line Tool

I got this idea from a fellow noid patient... it's a great one.

click on image to see a larger version

Since carcinoid requires so many different scans and doctors, she created a time line in powerpoint and loaded it into a dropbox password protected file - that way she could just give her doctors the dropbox password and they could download her medical treatment time line themselves. It'll take me a while to create something like this - but it beats going through my medical history every time I see a new doctor.

NET Cancer Awareness Day is Tomorrow!

November 10th is NET Cancer Awareness Day. 

Please visit http://netcancerday.org/ to see how you can be part of the movement to "think zebra" - and sign the online Worldwide NET Cancer Awareness Day Proclamation. 

We need your support!

It's Official - Nov. is Neuroendocrine and Carcinoid Cancer Awareness Month in NJ

I just received the Proclamation from Governor Christie's office today - pretty darn cool. Thanks to everyone for their support - especially the NJ Carcinoid Cancer Network.