Wednesday, April 27, 2011

Happy Anniversary to Me

“Birthdays don't really matter much anymore ... for me, I sort of have a new birthday and that's October 2nd, the day I was diagnosed, ... the day we all sort of look to and mark these milestones by one year, two year, five year, 10 year. Hopefully, I have a 50 year.” Lance Armstrong

One year ago today, I was diagnosed with carcinoid cancer; the following day, I started this blog. Recently, somebody commented that perhaps Channeling Jackie-O had lost focus, "I mean - is it a cancer blog? a travel blog? a food blog?" I guess the answer is - it's all of those things, because although cancer has become a big part of my life, it has not consumed my entire identity.

One of the toughest things about this past year has been trying to lead a "normal" life - in between doctor appointments... my blog is a record of both the cancer, and life beyond the cancer. So here is to another year of colonoscopies and Sloan Kettering appointments, teaching and grading essays, traveling with friends and eating great food... here is to another year of celebrating life - one day at a time.

Atlantic City Spring Break Kick-Off

Last Thursday was the first day of my spring break, and Gary and I celebrated by going to Atlantic City for some pampering. After checking into our room at Harrah's Resort, we went to White House for Italian subs.

White House Sub Shop, AC

White House subs are legendary, and the real deal. In fact, Frank Sinatra loved the subs so much - he once had them shipped from NJ to a movie location. But for "all its stardust, the White House remains a humble naugahyde-and-neon sandwich shop with a row of booths along the wall and a counter up front. The lighting is harsh, the napkins are paper, and the service is lightning fast: it would be a sin to sell subs any other way." (from

Now some of you may be scratching your head, saying "I thought Gary was a vegetarian. What is he doing with that giant meat filled sub?" Well, you're right - he is a vegetarian...with rules. He will in fact eat meat if it falls into one of three exceptions: 1) if we are traveling to an exotic location, 2) if he knows the farm where the animal was raised and slaughtered, or 3) if it is a dish that a famous restaurant is known for. White House Italian subs fall into exception #3.

After White House, we wandered around the AC outlets, and I picked up an 8$ t-shirt at H&M. Next, it was over to the Tropicana for some tasty treats at Cuba Libre Restaurant and Rum Bar.

Cuba Libre

We started out with cocktails: a watermelon mojito for me and a pineapple mojito for Gary, while snacking on some Tostones (twice fried green plantains with garlic mojo dipping sauce). Then, we indulged in the siren song of the coffee world - cafe cuba libre, which is dark Cuban coffee made with steamed coconut milk.

After we finished our coffee (and practically licked our mugs) we headed over to the Borgata because we wanted to try N.O.W. Noodle Bar. I don't gamble, but we had some time to kill so Gary taught me how to play the one-armed bandits - and I had a good time trying my luck at an "Airplane" themed slot machine ... I even scored a couple bonus rounds.

Even though it was 11:30 pm by the time we got over to the noodle bar, we still had a 45 min wait for a very disappointing, bland dinner of well... you guessed it... noodles. (And I LOVE noodles, so for me not to like a noodle bar - it has to be pretty terrible.)

Then it was back to Harrah's for some sleep before our "couples massage" at Elizabeth Arden's Red Door Spa. Luckily, our spa appointment wasn't until 9 am, so we had enough time to sleep off our noodle haze.

After our blissful massages, we checked out of Harrah's and headed to the Chelsea Hotel for possibly the best thing to ever come out of an oven: sweet monkey bread.

Monkey Bread at Teplitzky's in the Chelsea Hotel

Let me explain the genius of this monkey bread. First, the bread itself is a loaf of warm, twisty knobs of delicate pastry, layered with butter and cinnamon. If that wasn't enough to knock your socks off, there are two dipping sauces to dunk your bread in: homemade strawberry jam and a rich cream anglaise. I should also mention that the monkey bread was followed by perfectly cooked eggs, fresh squeezed juice, and a pot of strong coffee ... but that monkey bread made us go ... well, bananas! (too easy of a pun?)

What a great 48-hours with the guy of my dreams.

Hudson Valley Restaurant Weekend

iphone picture of Hudson Valley: March 19, 2011

Hudson Valley Restaurant Week
March 14 - 27 2011
Three courses, lunch $20 + dinner $28

Now that it's spring break, I can catch up on some blogging. A few weeks ago, Gary and I celebrated his birthday by spending a weekend in the Hudson Valley, and taking advantage of their restaurant week.

Day 1

Blue Hill at Stone Barns

The restaurant that Gary had his heart set on for his birthday dinner, Blue Hill, was unfortunately not participating in the Hudson Valley Restaurant Week - but the meal was so good that it was worth every outrageous penny.

The grounds are rustically beautiful, and the inside of the restaurant is designed to look like a modern, airy barn - complete with iron beams and white linens.

Blue Hill only has two dinner options: either a five-course tasting menu for $108, or an eight-course tasting menu for $148 (both menus provide the same amount of food - the eight courses are just smaller portions).

What perhaps is the most unique thing about the menu is that other than the number of courses, diners have no choices at all. The chef constructs the menu every night depending on what is fresh from the farm that day; and with each course, the servers explain the "local" ingredients. For example, before an amazing poached egg in pesto course, our server showed us this "nest" of eggs and explained how many egg-laying hens were on the grounds, and how the eggs were gathered that morning for our meal. Now that is fresh!

Gary and I both chose the eight course tasting menu, and with each delicacy, we ascended higher and higher into culinary heaven. One of our favorite small bites were these "beet burgers" - mini burgers made with beets and goat cheese on a micro-bun (pictured below).

After we left Blue Hill, with goofy smiles on our faces - trying to recall every epicurean detail of our wonderful meal, we headed over to our B&B: the Kittle House Inn.

Kittle House Inn

11 Kittle Road, Chappaqua, NY 10514

After getting our room keys from the "hotel reception" area (which doubles as the restaurant hostess station) we climbed a set of wooden stairs to a clean, comfortable room -- above the restaurant's kitchen. Surprisingly, it wasn't too noisy, and we were able to get a good night's sleep for the second day of our adventure.

Day 2

Luckily for our bank accounts - our culinary adventures on day 2 revolved around restaurants actually participating in Restaurant Week.

We started the day with lunch at Union Restaurant and Bar Latino, which was not only festively decorated, but featured beautifully prepared traditional Latin dishes with a modern flare. Another wonderful layer to our lunching experience at Union Restaurant was the "local" wine and beer offerings, meant to compliment the prix fixe menu.

Union Restaurant
Lunch Prix Fixe ($20)

Gary's Menu
Guacamole Tomatillo Salsa (chimol, hard egg, and smoked paprika tortilla chips)
Pan Roasted Hake Habichuela (zucchini, white beans ragout, and kale sauteed in citrus)
Conklin-Farm Apple Fritters (vanilla ice cream and Phillip & John honey NYC)
Mother's Milk Keegan Ale, Kingston NY

My Menu
BBQ Pork Quesadilla (jack cheese, cucumber, and cabbage coleslaw)
Pan Roasted Hake Habichuela (zucchini, white beans ragout, and kale sauteed in citrus)
Coconut Arroz Brlee (coconut rice pudding and caramel crust)
Millbrook Chardonnay, Hudson Valley, NY 2008


After lunch, we drove over to the CIA (Culinary Institute of America) to stroll their grounds and pick up a "class list" for Gary. The campus itself was lovely, and inspiring.

We even got to see the pastry class's "final projects" - themed cakes.... I really loved the detail on this one (especially the cute, muddy pig)

Valley at the Garrison - Dinner Prix Fixe ($28)

After we left the CIA, we were ready for our final meal of the weekend, dinner at Valley at the Garrison.

Gary's Menu
Garrison Farms Leek Veloute (speck, potato)
Wild Hive Grits (local egg, winter vegetables, black olive, caper berries)
Warm Brownie Pudding (coffee crunch ice cream, roasted almonds)

My Menu
Tuna Crudo (honey, chives, grapefruit)
Wild Hive Grits (local egg, winter vegetables, black olive, caper berries)
"Chunky Monkey" Bites (chocolate chip doughnuts, coconut cream glaze) - pictured below

The best part of the dinner at Valley was the creamy grits, which were served in a black iron skillet, with a perfectly poached farm egg nestled on top, and soft chunks of vegetable nestled underneath. The appetizers were clunky and had very single-note flavors; in particular, the thick chunks of tuna were just "ok", and lacked any real sweetness or acidity that the honey and grapefruit promised to provide. The deserts were also a bit disappointing. For example, although the doughnuts looked pretty, they were dry, despite sitting on top of a thin layer of cream. However, for the price and beautiful atmosphere - the grits alone were were worth it.

Trip Links:

Hudson Valley Restaurant Week

Friday March 18, 2011

Gary's Birthday Dinner: Blue Hill at Stone Barns
Bed and Breakfast: Crabtree's Kittle House Inn

Saturday March 19, 2011
Lunch: Union Restaurant and Bar Latino (participating restaurant)
Day Trip: American Culinary Institute of America (CIA)
Dinner: Valley at the Garrison (participating restaurant)

Sunday, April 17, 2011

Namaste, Yogadesha

"Faith is taking the first step, even when you don't see the whole staircase." Martin Luther King, Jr.

This past Sunday, I walked into a yoga studio for the first time in over three years. I have been threatening to get back into yoga ever since I moved to NJ, but it wasn't until a wonderful friend of mine arranged a private lesson for me at Yogadesha (Montclair, NJ) that I made good on my threats.

The word "yoga" is derived from the Sanskrit word "yuj", which basically means to unite. My yoga instructor, Rebecca Bergstrom, reaffirmed this basic philosophy as she explained that "yoga is not about self-improvement; it's about self awareness." Put another way, everything you need to conquer your fear, anxiety, pain is already inside of you - yoga is just a means of access.

I understand, respect and admire the proven benefits of yoga. There is little doubt that this ancient Indian practice, which is over 26,000 years old, has helped millions of people overcome countless physical and emotional ailments -- and there is plenty of scientific evidence documenting how meditation can change brain patterns to relieve pain.

But it's sort of like obeying the posted speed limits on the freeway -- a good idea, but who has time for that kind of cautious self-indulgence? I guess the answer is: I have to make the time.

My instructor, Rebecca, studied biology and psychology at Stanford University, and dance with Martha Grahm. She turned to yoga as a means to cope with the death of her young husband - when she was pregnate with her first child. She has the highest level of certification, and has helped people with ms, cancer, fibromyalgia, and other long term health concerns - and she most definitely has helped me.

Yoga classes typically start and end with the teacher and students bowing to one another, repeating the Hindi salutation "Namaste", which is a combination of two Sanskrit words: nama ("to bow") and te ("you"). So literally, "Namaste" translates to "I bow to you" - or more loosely translated, "The spirit in me respects the spirit in you." The spirit is the one thing that Western medicine largely ignores, even though it is a critical component in any recovery - especially from a physical trauma such as cancer.

"Trauma" is the Greek word for "a wound" (and for "damage or defeat"). I have had lots of physical damage and defeats over the past year, all of which are easily described ... but some of the emotional wounds my treatments caused are a bit harder to recognize and define - even for myself.

After giving Rebecca a complete account of my surgeries, treatments and testing, as well as a summary of my current levels of physical pain, we began working by having her touch certain key points on my body to heighten my awareness.

Before she began, she asked "do you mind being touched?" and I gave her the reply I give all my doctors and nurses these days, "do whatever you want, I've been poked, prodded and stuck by so many people so many times that I have no humility left"... And she stopped and said "what a trauma". I never thought of THAT aspect of my treatment as "traumatic" but her acknowledgement of how difficult it is to not have control over your own body brought on a flood of emotions: anger, resentment, loss, self-pity, courage ... all at once. The next 45 min were about control - my control of my body. It was amazing.

I'm definitely going to take her Wed "breath centered" yoga classes and find a yoga studio by me. It's a first step toward a different kind of healing - a step I'm taking despite not being able to see "the whole staircae" - it's about faith... in myself.

CCF Symposium on Neuroendocrine Tumor Management

I just registered for the Carcinoid Cancer Foundation's 14th Annual Symposium, entitled "Neuroendocrine Tumor Management: The Era of Personalized Medicine" on Sunday, May 1st from 1:00 pm to 5:30 pm at Mount Sinai Hospital in New York City. The symposium will feature three NET medical experts, sharing their insights and expertise:

Richard R.P. Warner, MD
Professor of Medicine, Mount Sinai School of Medicine
Director of the Center for Carcinoid and Neroendocrine Tumors
Mt. Sinai Hospital, NYC
Medical Director, Carcinoid Cancer Foundation

Edward M. Wolin, MD
Co-Director, Carcinoid and Neuroendocrine Tumor Program
Medical Oncology, Samuel Oschin Cancer Center
Cedars Sinai Medical Center, LA California

Eugene A. Woltering, MD, FACS
The James D. Rives Professor of Surgery and Neurosciences
Louisiana State University Health Sciences Center
New Orleans, Louisiana

To register for the symposium, click HERE.

Tuesday, April 12, 2011

Managing an "Orphan Disease"

"Carcinoid cancer and carcinoid syndrome are orphan diseases that do not garner as much attention as more common diseases, but we are trying to change that" - Dr. Richard Warner

There are about 11,000 to 12,000 people diagnosed with a carcinoid tumor each year in the United States. About two-thirds of all carcinoid tumors are in the gastrointestinal system. Specifically, appendiceal carcinoids account for about 26% of all carcinoid tumors, and out of these - only about 5% of appendiceal carcinoid tumors are greater than 2 cm.

Bottom Line (approximatly): less than 156 people are diagnosed with an appendiceal carcinoid tumor greater than 2 cm every year in the United States; I am one of them.

My friend Christine jokes that I won the very elusive "unlucky lottery" - and when you consider that 1,600 new lottery millionaires are created every year...she makes a darn good point.

If it wasn't enough to have a rare cancer, I also have a laundry list of very unusual symptoms:

* constipation after a right hemicolectomy (Dr. Nash teasingly pointed out during my last visit that this symptom has been conspicuously missing from my previous blogs... touche doctor). Usually, people without half a colon have the "opposite" problem with their bowels. Again, leave it to me to be the odd duck. It's rare, but sometimes the nerves in the colon negatively respond to surgery and the colon doesn't work as well afterward. Dr. Nash said he only sees this reaction in a few patients a year, and I'm on a daily dose of Colace (perhaps permanently).

* a heart rate that drops as my exercise intensity increases

* weakening muscle strength and increased joint pain

* exhaustion to the point of tears

* fevers and nausea

The most frustrating issue is that I'm getting progressively worse with each month - sometimes it's even hard to walk now. Is it related to the carcinoid? Since the MRI didn't show signs of the carcinoid metastasizing in the liver - probably not... but it's such a rare disease, how can we be sure? In search of answers, Dr. Nash and I have mapped out the following plan (including my annual colonoscopy since mid-gut carcinoid increases my risk of colon cancer):

Future Schedule

May 5th: cardiology appointment - Dr. Avendano (Cardiovascular Interventionalists)
June: rheumatology appointment (Hospital for Special Surgery in NYC)
July: colonoscopy - Dr. Maloney Patel (Robert Wood Johnson Hospital, CINJ)
October 7th: follow-up appointment - Dr. Nash (Sloan Kettering)

Thanks everyone for your continued support, love and prayers; I couldn't have gotten this far without you.

MRI Results

Dr. Nash called yesterday evening to let me know that the MRI scan looked normal. YES!! Now, as long as the cardiologist doesn't find any leaking valves on my echo, we can safely eliminate carcinoid syndrome as the cause of my other symptoms.

UPDATE April 12th: I spoke to Dr. Nash, who called me in between his surgeries today. (This guy deserves a bronze statue in Sloan Kettering's hall of fame.) He explained the CT and MRI results a little more in detail. I have two small cysts on my liver that were not in my previous CT scan. This is not unusual, because CT pictures are taken in intervals - so they can miss things. He just wanted to make sure they weren't new growths or changing, and the MRI delivers a much clearer image for monitoring purposes. (To read more about diagnostic CT and MRI imaging of benign liver cysts, click HERE.)

Monday, April 11, 2011

Tips for Surviving an MRI

MRI Machine

So, it's all over. I got my MRI done today at Sloan Kettering, without taking the Ativan. While my claustrophobia is still a major issue, today's MRI test went much more smoothly than the last one.

What is an MRI like?

After a nurse runs your IV line, you go into the MRI room and lie down on the "patient table". For a liver MRI, you raise your hands over your head, and a technologist straps a "coil" over your chest - which looks a little like a baseball catcher's chest protector. Next, the entire table raises up so that it's even with the machine's opening, and the technologist pushes you into the MRI tunnel until you're completely inside.

After you're inside, the machine (which is a huge magnet) turns on...which is loud, REALLY loud. Periodically, the machine will instruct you to breath or hold your breath as it takes pictures. There will be a lot of loud buzzing and beeping - and toward the end of the test, a contrast die is injected into your IV. When it's all over, you get pulled out of the tunnel, and the table lowers down so it's easier to get off. The entire test takes anywhere from 35-40 min.

Top 5 Tips for MRI Testing

1. Wear pajamas and Uggs.

You can wear your own clothes for an MRI exam as long as there is absolutely no metal on them. This means nothing with snaps or zippers, no bras with underwire, and no metal aglets (the little tubes at the ends of sweatshirt strings and shoelaces). Make sure to also remove all jewelry.

2. Go in Feet First

For organ imaging (liver), request to be put into the machine "feet first". You still end up completely inside the machine, but it psychologically feels better when your head is the last thing to go inside the tunnel.

I love this cutaway diagram, mainly for the totally unnecessary identification of the "patient" - as if they were worried that people might mix up the "patient" with the "radio frequency coil" or the "gradient coils"

3. Get Blindfolded

Ask the technologist to give you a blindfold, and put it on before the table starts moving. This was a tip from my amazing friend (and hero) Sasha Cano, who won her battle with cancer after undergoing two brain mapping surgeries. Her story is nothing short of miraculous and inspirational, and she is featured in many of UCSF's advertisements (click HERE to read Sasha's story.) I don't know why it's so much better using a blindfold rather than just closing your eyes, but it really does help. Plus, you get to keep the snazzy blindfold as a lovely parting gift - BONUS!

4. Have a Secret Weapon

You need something to occupy your panicking mind for at least 30 minutes. I had two secret weapons: 1.) a folded-up slip of paper in my shoe with an inspirational quote printed on it and 2.) a cadbury creme egg in my purse. While I was in the tunnel, I kept repeating the quote over and over in my head, while visualizing myself safely in my car on the way home from the hospital, eating that creamy, chocolately egg-shaped treat.

5. Take a Break

When the nurse comes into the room to inject the contrast into your IV, ask to be pulled out of the machine for a few minutes. Don't take the blindfold off or move around... It's enough just to know that you're out if the tunnel, which allows your body to relax.

Visiting the "Quote Garden" Before My MRI

Worrying is like a rocking chair, it gives you something to do, but it gets you nowhere. ~Glenn Turner

I am extraordinarily claustrophobic, so an MRI is basically my least favorite thing in the world. Dr. Nash ordered a mild sedative for me this time, which hopefully will help.

One of my students, who is a cheerleader, let me in on a little secret ... before the cheer team goes into a big competition (and they usually win Nationals), each cheerleader tucks a small slip of paper with an inspirational quote on it into their shoe. My student explained that the quote changes with each competition, and gives the team a sense of hidden strength and unity.

I'm stealing this idea, and have chosen the following quote to slip inside my own shoe for today's competition between myself and that coffin-like tube...

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." Eleanor Roosevelt

Between the quote and the sedative, I might just be able to control my panic long enough to avoid being pulled out of the machine every 15 minutes because I'm "freaking out" (I believe that's the medical term for it). Guess we will see.

Saturday, April 9, 2011

CT Scan and Dr. Nash at Sloan Kettering

(Gary catches me looking contemplative while getting my contrast IV - as if I'm pondering my mortality or the meaning of life ... when actually, I am just thinking about how awkward my knee-high leather boots look with my paper gown.)

Just a quick update on my CT scan (which stands for "computed axial tomography") and followup appointment with Dr. Nash yesterday.

First, the good news.

It turns out that Dr. Nash reads my blog (how awesome is that?), and he started the appointment by correcting some information in one of my previous posts. Some medical journals lead me to believe that my likelihood of cancer recurrence was high, but Dr. Nash said that given the fact the cancer wasn't in my lymphnoids, my recurrence rate could be as low as 10% - which is fantastic!

Now, the other news.

The CT revealed two small spots on my liver, which probably are nothing to worry about - but since I have these other symptoms, I have to go for an MRI on Monday just as an extra precaution. If the cancer has spread to the liver, then there could be a chance that my other symptoms are being caused by carcinoid syndrome. If the cancer hasn't spread to the liver, then I have to go to a bunch of other specialists to try to figure out my pain issues. Either way, Monday will yield some answers and I can move forward - which will be a big relief.

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Thursday, April 7, 2011

End of the Marking Period

I teach 4 sections of World Literature Honors (seniors) and 1 section of British Literature (juniors). Yesterday was the last day of the third marking period, and grades are due Monday. I always work on weekends, but last weekend was a marathon - I spent more than 25 hours grading and prepping. This weekend's forecast appears just as dismal: with 100% chance of excessive caffeine, "Murder, She Wrote" netflix reruns, and red pens.

Today, I am going to Sloan Kettering for a CT scan and meeting with Dr. Nash. I'll be curious to see my own "health" report card, which hopefully will show great improvement.

11:45 - radiology
12:45 - CT scan
2:00 - Dr. Nash

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