Tuesday, December 2, 2014

Grammar Lesson #23

Linking Verbs


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Monday, November 10, 2014

Happy NET CANCER AWARENESS DAY

The theme for this year’s NET Cancer Awareness Day (Nov 10, 2014) campaign is “Time to Diagnosis,” focusing on one of the most common issues with carcinoid and other types of neuroendocrine cancers: misdiagnosis.

The International Neuroendocrine Cancer Alliance (INCA) and Carcinoid Cancer Foundation put out a call for NET patients and survivors to send in photo selfies with a downloadable placard that shows how many years it took to be diagnosed, the misdiagnosis, and actual diagnosis.

For me, it took over 5 years and countless failed CT, ultrasound and MRI scans that finally lead to a surgery for a suspicious complex ovarian cyst (read ovarian cancer possibility). It was during that surgery that my carcinoid tumor - that had perforated my appendix wall - was accidentally discovered and again misdiagnosed as recurring appendicitis until the biopsy came back.

After my carcinoid diagnosis, I went through my old radiology notes. Unbelievably, the three most recent scans unanimously, and erroneously, declared "appendix unremarkable." Granted they were looking for ovarian cancer - but what is truly "remarkable" is they missed a 3 cm tumor over and over again.

Had they found the tumor early, I would have had a simple appendectomy and been 99% cured. Instead, I was gutted like a fish (although scoped masterfully by my hero Dr Nash at Sloan Kettering) and lost 1/2 my colon and 20 lymph nodes with a subsequent infection, open wound care, and ongoing health issues.

It's still a struggle. I have a chronic condition that includes flushing, bone crushing pain, muscle weakness and a myriad of other not so nice things. Some symptoms are self-reporting and others are independently observable or in the labs.

The jury is still out - and arguing the old chicken and egg riddle ... Is my chronic health condition caused by carcinoid syndrome or was the carcinoid a by-product of some overarching mystery disease. I stopped spending my time trying to solve the "which came first" riddle and have instead learned to focus on trying to naturally manage my day to day symptoms and staying positive.

The carcinoid slogan is true "if you don't suspect it you can't detect it." Listen to your body - if you know something is wrong with your health but no one can figure it out ... encourage your doctors to look for the unusual - zebras instead of horses when they hear hoofbeats.





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Tuesday, October 7, 2014

Shoot For the Moon... Get 14 Blogs

So I really wanted to get back to writing, and thought the "30 Days of Summer" project would be a good motivator. However, as any Mr. Softee truck driver, school kid, or teacher will tell you, the summer is always too short. And here we are, at the start of a new school year with a whole new set of adventures and tomfoolery to write about. The remaining 16 missing blogs of the "30 Days of Summer" project will have to slide through the cracks of autumn, and come in drips and drabs as the year rolls on.

Until then, I'll leave you with a recent conversation with one of my seniors:

Me: You were supposed to find the four noble truths that correspond to the first four chapters in Siddhartha... why didn't you do your homework?

Student: I did. (shows me the sentence from chapter 1 that I used as an example in the previous class lesson)

Me: I already gave you guys that one yesterday... what about the other three?

Student: Well I wasn't paying attention in class yesterday, so I should get credit for at least this one since I found it on my own.

Let the games begin

Back to School Night Swag

Monday, September 1, 2014

Cupcake Tour of NYC

When a Groupon deal came along for a cupcake walking tour of the West Village, complete with food, I jumped at it. To my great delight and amazement, my future stepson Michael (14 yrs old) said he'd like to go with me. This was our first solo outing without Victor, so I was a little nervous ... but what the heck, what kid doesn't like cupcakes?

NYC Cupcake Walking Tour Review (Great NY Tours)

So we set out for Manhattan and joined about 15 other tour goers in Union Square. Our guide, Jessica, was an outgoing bundle of trivia and enthusiasm. Our tour included 6 delicious stops, and historical facts along the route to each confectionist.

First up was Baked by Melissa in Soho, which packs diverse flavor profiles into their signature mini cupcakes. Michael was kinda quiet, so I asked what cupcake flavors he liked ... He responded quickly, while looking off into the distance, "vanilla with vanilla frosting." Uh oh, this might not be the slam dunk outing I was hoping for.

Luckily I had a secret weapon... Melissa's was the only place on the tour that I had visited in the past, and I knew exactly the cupcake I wanted him to try. As part of the tour, we each got their flavor of the month (vanilla cookies and cream) and an additional cupcake of our choice... I whispered to Michael, "get the peanut butter and jelly" - one bite and his eyes lit up. And just like that, we started having a great time. Thank you Melissa!

Next up was Amorino, an absolutely amazing gelato place which is a French chain (after all a tour can not live on cupcakes alone). The tour included a heaping sample of their most popular flavor: mango. Before Amorino, the best mango I ever had was straight from the street vendors in Nicaragua ... the gelato's creamy rich mango power punch, however, topped Nicaragua's fresh fruit.

Mango gelato

We left mango heaven and headed over to Bisous Ciao Macaroon. This was the tour's one slip up in my humble opinion. The tour included a double chocolate macroon, which was very heavy and rich ... I'd suggest switching the stops so the gelato could be a pallet cleanser for the macaroon. Just a thought. But the macaroon colors were like an artist's palette and hard to resist - so Michael and I bought some fruit flavors to go, which were all much tastier (and prettier): lemon, blood orange, pistachio, salted carmel, and green tea.

We also visited Milk and Cookies, and were given giant white chocolate macadamia cookies to try. Child's play. Michael went ahead and bought a bacon, chocolate chip cookie to go - despite the girl behind the counter telling us "it kinda tastes funny, I don't like it." Well, she was right. I've had some scrumptious sweets that incorporated chocolate and bacon before, but this tasted more like baking soda and gristle. But that brief bacon let down was soon replaced by my favorite stop - Molly's Cupcakes on Bleaker.

Molly's Cupcakes was founded as an homage to the owner's third grade teacher, Miss Molly, who used to bake cupcakes for the class when a student had a birthday (in a time before peanut allergies and school approved snacks). Inside Molly's, there are lunch boxes on the walls and swings at the counter. We got to make our own cupcakes - for our cake flavors, Michael chose a carrot cake base and I chose banana, but we both got the brown butter frosting, which is their signature flavor that helped them win Cupcake Wars on Food Network. The cake was dense yet soft, and frosting was creamy yet fluffy. They even had a sprinkle bar.

Michael and I finished every crumb of our giant cakes, only stopping every few moments to gush "this is so freaking good!" We vowed to go back to try some signature flavors like the Ron Bennington (dark chocolate with peanut butter filling and chocolate butterfinger topping).

The last stop was Magnolia Bakery, made famous by Sex and the City. We got to try a mini sample of their red velvet and in short, it was very disappointing. The frosting was too airy - like the end of a whip cream can, and the cake hard. If it was a full sized cake we would have thrown it out.

Magnolia

While Magnolia was disappointing the tour was great. We learned all kinds of interesting NYC facts - like Washington Square was built on a potters field with 10,000 bodies under it, and the "hanging tree" for public executions was conveniently near by. We also saw famous buildings like Eleanor Roosevelt's residence, the TV show Friends house, and the narrowest building in Manhattan - only 9 feet wide, which was built during prohibition to prevent crowds from gathering in the alleyways outside a famous speakeasy (after all they couldn't call the cops). This "little" building was also used in the Stuart Little film ... a movie both my little sister and Michael like a lot.

The afternoon was so successful that at the end of our 3 hour walk, Michael said we should sign up for their pizza tour. All in all, a very "sweet" afternoon with my wonderful future stepson. Can't wait for our next adventure.

FINAL FUN FACT- cupcakes were invented in the Babe Ruth era of baseball when outfielders would stuff cake into cups that they would keep in their back pockets to snack on while waiting for fly balls.

 

 

 

 

 

Saturday, August 30, 2014

Confused Marketing

On my recent travels, I was reminded of the power of language (or misuse of language). One more reason for my students to pay attention in English class. (hotel do not disturb and airplane snack).

Where am I going that I can't be disturbed?
Def "A Hail Mary pass or Hail Mary route is a very long forward pass in American football, made in desperation with only a small chance of success, especially at or near the end of a half."

 

New Back to School Uniform

At the end of last year, I was told that since I used to be a lawyer I'd be teaching a new legal professions class in addition to my upper level literature classes. When I asked what a "legal professions" class was - my superior shrugged and said, "whatever you want." Hmmm .. In exchange for creating a new curriculum, I feel like I should get a couple "dress down days" so I can sport some of these spiffy Ts.

Ruby 6 ... Pure Gold

I went to Lisa at Ruby 6 in the Village for the first time after getting an orange tinted one-process dye job (pictured in below top left frame). I wanted a deep red, but in the sun, my hair took on a hue that mimicked a SF Giants jersey that had been washed 10000 times. Although I'm pale, I have an olive skin tone, and my hair just made me look washed out and a little green.

I found Lisa in a NY magazine review... I went in for consult and she asked:

"They let you leave the salon like that?"

Yup.

She noted that the top of my head was a few shades lighter than the bottom, and said, "Did they at least acknowledged they did something wrong?"

Nope.

She assured me it was easy to fix. She (unlike the other salon) let my roots set for longer, and painted parts of my hair at different intervals. It came out an even rich Auburn that put a smile back on my face. I even made Lisa's Facebook page :)


A few months ago, I would have just dealt with the washed out Wilma Flintstone color; after all, I am lucky to be alive and feeling well - isn't that enough? Call me greedy but I want more. I want to feel pretty... Isn't that what every girl wants? In the words of my dear friend Joe, "no one wants to go through life feeling like an old pair of shoes shoved in the back of the closet."

 

 

Tuesday, August 26, 2014

Sock Baby TOO

When my grandma was sick a couple of years ago, my mom and sister flew out from CA and we all stayed at grandma's house together. I got it into my head that I wanted to make a sock baby because on one of my trips to Barnes and Noble, I picked up this awesome book with really poor grammar: "Stray Sock Sewing, Too." So my sister and I spent a very long night (with my mom supervising) creating my first sock baby: the dinosaur.

This summer I set a craft goal of creating a second sock baby, and son-of-gun I DID IT! I was trying for a pig but it came out more like a cute weird NYC creature. I used all the leftover materials my sister and I bought years ago, but obviously I needed my sister too. It's not nearly as good as sock baby #1... but at least I can check it off my list ;)

 

Monday, August 25, 2014

Crossing Crossroads

This is the summer of new experiences and fresh fashion, so what better way to fund an updated style than selling some old clothes? I've never been to a clothing reseller before, so I scoured Yelp for the inside scoop on where to go and what to sell; based on the reviews, I settled on Crossroads in the Village.

In general, BUY-SELL clothing stores offer you either 55% of the estimated sale price in store credit, or 35% cash on the spot - which seemed like a gamble worth my time. So I meticulously sorted through my closet and gathered (what I thought to be) a diverse selection of hot cake sellers... some still sporting their original tags. Bulging ecofriendly bag in hand, I boarded the subway from Queens to Manhattan, ready to make a little scratch.

When I arrived at Crossroads, I put my name on their "sell waiting list" and browsed a bit. They had a lot of worn out H&M / American Eagle, with a few smatterings of higher priced ticketed items. When they called my name 20 minutes later, I felt fairly optimistic.

One by one, the sales girl examined each item with paulpable disdain; as if I had just dragged in a trashbag of old unmatched socks, which she now had to sort through.

Finally, she stopped looking bored long enough to announce that I wasn't "in line with current trends" and took only one piece - a Forever XXI shirt with the $18 tag still on it... for which I got a whopping $2.28 - less than the cost of my subway ride home.

All in all, it was a disappointing experience. I left feeling even more desperate to update my seasonal frocks than before - but without any extra spending money.

If I were to reapproach the concept again, I would load up on cheap sundresses from Forever XXI type stores in May and June, and dump the ones that were so-so at the start of August. ... In the meantime I'll take the sales girl's advice and check out this season's fall fashions on their blog to see if I've got anything up to "Crossroads' style standards" that I can recycle... If for no other reason than for a little fashion vindication.

 

Monday, August 18, 2014

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.

 

 

 

Thursday, August 14, 2014

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.

  

Wednesday, August 6, 2014

Theme Song for Kicking Cancer's Butt

This amazing woman says it all.

 

 

Friday, July 25, 2014

Monster in Hiding

OUR NEWEST FROGFISH HIDING IN OUR ELEGANCE CORAL
love our salt water aquariums; they are more than underwater gardens, they are secret doorways to hidden worlds. You see animal behavior you can't believe - like our anglers literally holding hands when they feel threatened, our rock skipper's colors changing for no apparent reason at all, our corals dancing in the current, and our clownfish hunting live guppies and feeding them to its host bubble tip anemone.

Salt aquariums force you to work through complex problems, and research constantly. You also learn patience and flexibility; for example, you could spend hours setting up your rocks perfectly only for an urchin or hermit crab to rearrange things in 2 min. Every day there is something new to discover ... it's a living hobby that brings me joy and wonder every day.

Monday, July 21, 2014

Mood Music

In a world where life's pressures often feel too much to bear, and inner peace feels too fleeting to hold onto ... it's hard to choose to be happy. Yes, happiness is a choice - not some tangible person, or event, or goal you chase after. It's a way of living - a way of being open to possibilities of a greater purpose. Sometimes, I have to remind myself that if Holocaust survivors, like Viktor Frankl, were able to find spiritual resistance and resilience in that hell, so can we all.

That being said, sometimes we could use a reboot; like a frozen computer screen, we get stuck and can't seem to process the world around us in a positive way. The power of music over mood and physical well being is scientifically established ... But you don't need medical journals to tell you that; just go into any mall department store and listen. Clothing stores utilize music to increases confidence and sales, just as bars use music to boost booze consumption and endorphins.

Still skeptical? Try this little experiment that I do with my English classes to teach the difference between "mood" and "tone". Listen to Hey Ya by Outkast and then the version of Hey Ya by Obadiah Parker. You will feel an involuntarily shift in emotion.

We subconsciously mimic the mood of the music we listen to - so when you're feeling depressed, resist dwelling in cathartic sad tunes for too long and opt instead for songs that pass the American Band Stand Test: they have a good beat and are easy to dance to. (Ps. I personally am guilty of putting on lonely, crooning songs when down. In fact, my mom knows every Depeche Mode song by heart because as a teen, when I was upset, that was my go to band for my "Depressed Mode" soundtrack.)

Below are my top five music videos that help me shift gears and change direction when I'm going in circles: Ms. Jackson by Outkast, I Like the Remix by New Kids on the Block, Sitya Loss by Eddie Kenzo, Weapon of Choice by Fat Boy Slim, and Radioactive by Imagine Dragons.



'Ms. Jackson': The supporting cast of animals grooving along to this song in the video are as smooth as Outkast's catchy lyrics. My personal favorite extras are the cantankerous kitten and hooting owl. Fun fact: the song features an altered version of "Bridal Chorus" from the opera Lohengrin by German composer Richard Wagner (also known as the "wedding march").



"I Like the Remix" by New Kids on the Block is a blast from my 80s past - just updated.. It features one of the best statements on inner beauty I've ever seen in an overly sexualized industry. This video is sure to boost any girl's confidence thanks to Artemis Pebdani's sassy attitude. * Urban Dictionary definition SASSY = possessing an ungodly amount of cool.




I fell in love with Ugandan children while working with the Invisible Children project 9 years ago. For more than 30 years, Joseph Kony has kidnaped over 30,000 Ugandan children, and through unspeakable acts of machete brutality and psychological torture, forced them to become child soldiers in the LRA. Luckily, grassroots movements seem to finally be effectuating change; just yesterday, CBC reported that Kony's LRA army is on the run. This video shows Ugandan children dancing to an Eddy Kenzo song (Ugandan singer). If these kids can find joy, what's stopping us? PostScript: Kenzo promised not to leave the kids behind, and has kept his promise - finding them a home and taking them along with him for shows. The featured "ghetto kids" no longer wear tattered clothes and are malnourished - a drop of humanity in an ocean of human rights abuses against Ugandan children.



If you've never seen Christopher Walken's dance swagger - you need to see this Spike Jones directed Fatboy Slim video immediately, if not sooner. I dare you not to smile. Fun fact: the line "halfway between the gutter and the stars" refers to a line in Oscar Wilde's play Lady Windermere's Fan: "We are all of us in the gutter, but some of us are looking at the stars."



'Radioactive' by Imagine Dragons has Lou Diamond Phillips, a radioactive pink teddy bear, and an underground puppet fighting ring that harkens back to Jabba the Hut scenes from Star Wars. Need I say more?


Finally, my bonus "feel good" pick has to be Stephen Colbert's 'Get Lucky' Music Video. (It is a Comedy Central clip so you have to chase it a bit on the internet. Totally worth the search.) I'm a huge Colbert Report fan, and was lucky enough to see this air live. What a treat! Colbert and friends try out their best dance moves ... set to Daft Punk’s 2013 summer hit ‘Get Lucky‘ - featuring appearances from Hugh Laurie, Jeff Bridges, Jimmy Fallon, Bryan Cranston, Henry Kissinger, Matt Damon, Jon Stewart, Nick Cannon and the Rockettes. Classic.

Friday, July 18, 2014

Summer Grammar Refresher #wordcrimes


I'd like to interrupt your regularly scheduled lackidazical summer with a little grammar refresher ... After all, Back to School sales are everywhere - even though we have only been out of school for about 2.5 weeks.

Weird Al did this spoof on Blurred Lines by Thicke .. If you are having sound problems with the above embedded video look it up on YouTube -  it's worth the extra 2 seconds .

Monday, July 7, 2014

Yo - Anyone See Hamlet?

Our school year went long; my last day was June 30th! At least some of my students gave me a few end of the year chuckles on their final exams and projects.

The above is an answer to a 12th grade exam question: Why do you think Shakespeare left Hamlet out of Act 1 Scene 1? (Btw Act I.i takes place outside.) #Elsinorishellabig

My favorite project: 10th graders created IPod playlists for the characters in King Lear. Students had to choose songs that their character could theoretically identify with, and pick out the lyrics their selected character would like best, with an explanation as to why. This sweet, quiet, incredibly polite boy came up with the song Loyal, and specifically the lyrics: "These Hoes Ain't Loyal"... and nailed his explanation. #CordeliaOG

I've got the best job in the world...but I'm glad for the break from my 126 darlings until September.

 

 

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.


Sunday, April 27, 2014

Photographing Your Monster

I stumbled on this great UK article where a photographer used mini figurines to bring their nano tank to life. One of the cutest things about angler fish is when they use their little lures to fish ... I think this picture is brilliant. Below is a collage of our anglers playing around angler eggs! (They are under the red one... Looks like a smoke swirl).

 

Above is Victor's tank as of April 2014. We tried Brazilian anglers, who use a worm lure. Sadly, they had a bacterial infection we are still treating. That's the luck of getting wild fish ... They can carry disease. Most big time aquarist have quarantine tanks for first few weeks of getting a new fish ... It's an option we are looking into. As you can see the coral is flourishing ... Thought it would be neat to show bubble coral eating - it reminds me of Audrey II from Little Shop of Horrors.


[LITTLE SHOP OF HORRORS last lines, director's cut]

Company: [singing] Hold your hat and hang on to your soul/Something's coming to eat the world whole/If we fight it, we've still got a chance/But whatever they offer you/Though they're slopping the trough for you/Please whatever they offer you/Don't feed the plants!/Don't feed the plants!