Starting Over

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

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

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

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

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

"Sure" I replied.

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

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

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

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

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

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

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

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

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

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



- Posted using BlogPress from my iPhone

Food for Thought

According to The National Cancer Institute, three out of four Americans will die from diseases linked to poor nutrition such as heart disease, diabetes, and some cancers.

Since my carcinoid cancer diagnosis, Gary has completely overhauled how and what we eat at home and at restaurants. He shops organically, and we don't eat meat unless we actually know the farm it comes from. This, however, has not prevented me from partaking in a steady stream of marshmallows and chocolate - both of which seem to sneakily slip into my diet on a daily basis.

What amazes me is that through two surgeries, a cancer diagnosis, and a barrage of specialists  - not a single doctor has ever asked me about my regular daily diet. Not one. In fact, other than the temporary diet restrictions following my right hemi-colectomy, "food" has never been discussed as part of recovery, prevention, or treatment of whatever it is that is still making me sick.

While I don't know about totally giving up my sweets - I do know that I need to be more responsible in my independent food choices. Since Gary basically has the home-front covered, I think that what I really need is a basic meal plan for school days... breakfast / lunch / snack. Time to do some thinking (and shopping).

Black Raspberries v. Carcinoid Cancer

A few weeks ago, I attended the Carcinoid Cancer Foundation's Symposium on Neuroendocrine Tumor Management at Mount Sinai Hospital. It was excellent; in particular, I was extremely impressed with Dr. Eugene Woltering from the New Orleans Neuroendocrine Tumor Specialists (NOLA NETS).

Dr. Woltering presented a radically different view and approach to carcinoid cancer treatment. Firstly, he considers carcinoid - whether a patient presents syndrome symptoms or not - to be a chronic disease because of its long term devastating effects on the body. He used the "hypothetical case" of a patient with a midgut carcinoid tumor (without noid or liver metastasization) to lay out what he considered to be the "standard of care" for carcinoid treatment following removal of the primary site tumor:

1. MRI and ecocardiogram every 6 months for the first three years following surgery;
2. Sandostatin monthly injections for a minimum of one year following surgery;
3. Octreoscan within the first year following surgery;
4. long term daily dose: 40 grams of black raspberry powder. (45 grams of freeze-dried powder is equal to 1 pound of fresh berries)

He also presented specialized target chemotherapy for recurrences... which he set at a much, much higher rate than Sloan Kettering does.

In short, he presented a more aggressive approach following surgery. Personally, I trust Dr. Nash, and prefer the "let's wait and see" approach rather than sandostatin injections and more screenings. I will, however, add the black raspberry powder to my diet.

The medical research (funded by the American Cancer Institute) Dr. Woltering presented on the benefits of black raspberries was overwhelming. The reason why it's such a "natural wonder drug" is that the antioxidant level in black raspberry powder exceeds all berry types - with anthocyanin (antioxidant) equaling 5 to 7 percent dry weight. Also, it is a COX2 inhibitor - reducing inflammation as well as slowing the growth of pre-malignant and malignant tumors.

The only problem is the cost (about 7$ a day). I have heard that some insurance companies will cover it with a prescription... I guess that's something worth investigating with my own insurance carrier (United Health Care). I'm not holding my breath.

Resources on Black Raspberry

Research about Black Raspberries and Cancer:
Science Daily Article: Black Raspberries Slow Cancer by Altering Hundreds of Genes
Ohio State Research: Black Raspberries Show Multiple Defenses in Thwarting Cancer
MSNBC: Black Raspberries Prevent Colorectal Cancer in Mice
Cancer Prevention Research: Black Raspberries Inhibit Intestinal Tumorigenesis Apc1638+ / - and MUC2-/- Mouse Models of Colorectal Cancer

Purchasing Black Raspberry Powder:
Note: you need to purchase 100% black raspberry powder - do not get tricked by products that advertise "black powder" made with blue raspberries! Also black raspberries are not the same fruit as the "blackberries" you buy in the store.

NutriFruit - $24.95 for 142 grams (most expensive)
Stokes Berry Farm - not accepting internet orders
Sturms Berry Farm - $79.20 for 5lbs of frozen berries (not powder)
BerriHealth - $340.50 for 3000 gram bulk powder
Acai Berry Pure Bulk - $325 for 5 lb bag (approximately 2267 grams)

Q: What's Good for a Sore Throat? A: Bent Spoon

My pre-Valentine's Day masterpiece from The Bent Spoon: chocolate port ice cream on the bottom and chocolate-covered-strawberry sorbet on top.

To celebrate Valentine's Day, Gary and I were supposed to go to Avenue last night - a beautiful French restaurant in Long Branch with floor to ceiling windows overlooking the ocean. Unfortunately, I've been plagued by flu-like symptoms for the last few days: sore throat, runny nose, aches, sneezing, ear infection ... the works. Gary was such a good sport though; he just canceled our reservations and instead took me -sniffles and all- for a steaming bowl of noodle soup at Rai Rai Ramen followed by ice cream at The Bent Spoon in Princeton.

TripAdvisor ranked The Bent Spoon #2 out of 68 restaurants in Princeton, and it's probably one of the few ice cream places in the world that has a line out the door in the middle of winter (with only three indoor tables). If waiting in a long line to eat ice cream outside in the freezing cold seems like a ridiculous notion - it's obvious that you have never eaten at The Bent Spoon before. Publication after publication (NY Times, NJ Best, Time Out NY, NY Post) have touted the glories of The Bent Spoon's crazy delicious treats, and I too have been known to blabber on incessantly about their legendary flavors to anyone who will listen.


Above is a picture of The Bent Spoon menu from Serious NY Eats. The flavors change all the time depending on what they can get locally, so you never know what flavors will show up on those little brown paper bags. The owners (a husband and wife team) estimate that they have about 380 flavors in their rotation - every single one using only organic, locally grown ingredients like "honey culled from Jersey bees or chocolate laced with mint grown by student farmers at a nearby Riverside Elementary School" (NY Times). Probably two of my all time favorite flavors are blueberry mascarpone (only in summer) and Guinness - Baileys cream (only around St. Patrick's Day), but the chocolate-covered-strawberry sorbet that I had yesterday is definitely in my top 10.

The sweetest thing about the afternoon, however, wasn't the velvety perfection in that little black plastic cup... it was the fact that I was with Gary, and thanks to my doctors I hopefully will get to spend many more Valentine's Days with the love of my life.

Oprah vs. Milk (& Cookies)

Senior and Junior English Midterm Exams:
In the Grade Books!

After grading 119 exams, I got a real treat - a snow day because of the ice storm that hit last night. Gary also had a snow day, so we indulged by watching some programs on our 80% full DVR. First up - Oprah.

Even though we aren't regular Oprah watchers, we taped yesterday's program because it featured one of our favorite "food rock stars" Michael Pollan. The program, however, did not closely examine Pollan's famous "food rules" - instead it followed Oprah and 378 of her staffers as they took a challenge to go vegan for a week (which means no animal products at all - no eggs, cheese, meat, butter etc). The vegan charge was lead by veganist Kathy Freston, a beautiful best-selling author of vegan diet and cook books. Pollan got a couple of words in here and there, but really it was Kathy's show.

The difference between Pollan and Freston is a critical one, although not really discussed on the program. While there are health benefits to vegan and vegetarian diets, just eliminating animal products doesn't necessarily mean that you are following a healthier diet.

For example, a lot of the "meatless alternatives" Freston pushed on the episode are highly processed with unhealthy artificial chemicals and high in sodium. (For more on problems with "meatless" substitutions, read: "3 Things You Should Know Before Going Meatless".) Also, Freston doesn't take into consideration Pollan's motto of "think global, eat local" - the fruits and vegetables a vegan consumes could be shipped from farms thousands of miles away, or from farms that use dangerous chemical pesticides. We are better off eating locally grown, organic, non-processed food rather than just cutting out meat, cheese and eggs all together.

Of course, all this food talk made me hungry, so I went to our kitchen for a little snack of milk and cookies. As I was munching away, I realized that my simple snack was a good illustration the shortcomings of Freston's ideas.

Who Doesn't Like Milk and Cookies?

No one will deny that Girl Scout Cookies are delicious (and irresistible when your next door neighbor's six year old is peddling her wares in a red flyer wagon), but there is really nothing nutritious about them. In fact, the first ingredient is sugar; the other ingredients include: peanuts, enriched flour, vegetable shortening, high fructose corn syrup, cocoa, corn syrup solids, corn starch, leavening, salt, soy lecithin, whey*, artificial color, natural and artificial flavor, sodium. The milk, on the other hand, is organic, from non-hormone, grass fed cows, raised on a family farm in PA. While the milk does contain "bad fats" - it is also packed full of protein and vitamin D.

Now, a vegan could eat the processed, nutritionally void peanut butter patties - but they could not drink the calcium rich milk. Instead, they might turn to a Coke to wash down their cookies, which is a perfectly acceptable vegan product. Do you see where I'm going with this?

At least the conversation is happening though. One thing both Freston and Pollan agree on is that we have a real epidemic on our hands in America - and we are literally nutritionally starving to death while simultaneously becoming obese. Sadly, there is no quick fix or fad diet to correct the last 100 years of changes in the food industry largely responsible for this health crisis, but we can - as Pollan says - "vote with our forks" one meal at a time.

Click Here for Feb 1, 2011 Oprah "Vegan" Show Details.

*A friend just pointed out that technically "whey" would eliminate the cookies for vegans; but I think you get the point - plenty of junk food is both "meatless" and unhealthy.

Pastina, Ramen, and Falafel: Jersey Comfort Food

This Christmas break, I was sick; really sick. (Luckily my body had the good sense to wait to completely fall apart until I had some time off from teaching. It's hard enough to function when you're feeling lousy - try being "on stage" in front of a 140+ teenagers while feeling lousy.) To help lift my spirits, periodically throughout the week-long holiday, Gary would make my favorite childhood comfort food: Pastina.


When I moved to California, Pastina was next to impossible to find outside of an Italian specialty store. Here in New Jersey, boxes of Pastina line the shelves of every grocery store. Growing up, I was plagued by severe ear infections, and my Sicilian mother would make me heaping bowls full of these little pasta stars, mixed with butter and salt, whenever my ears would ring and bleed; for me, Pastina remains the epitome of comfort food.

But not even Pastina sounded good last week, during our second snow day of the season. Usually teachers love snow days as much as the kids, but I woke up with nausia, a fever, and a soar throat. So Gary, our friend Chaya and I sought out some relief from the cold at the bottom of a steaming bowl of hot ramen soup at Rai Rai Ramen in New Brunswick, NJ.

Magnet from Rai Rai Ramen - Permanently Stuck On Our Fridge.

Pictures from Rai Rai Ramen by Amnet NY Times

It was so delicious - salty and sweet, with hot steaming noodles to slurp up.

And wouldn't you know it - this Martin Luther King Jr. long weekend, I once again came down with a fever, soar throat and joint pain - and once again, Gary and I went in search of some comforting food. This time, we found ourselves at a vegetarian mecca: Maoz Vegetarian - which is a "fast food" chain specializing in authentic falafel and vegetarian food.

The restaurant chain has not only gotten some major press, but it is also pretty easy to spot - it's floor to ceiling green tile with a couple of wooden benches. In addition to six US locations, there are Maoz Vegetarian franchise restaurants in The Netherlands, UK, France and Spain.

Gary Checking Out Menu at Maoz in New Brunswick, NJ

Maoz's "Meal Deal" - Picture from Maoz USA Website

I ordered a falafel and Belgian fries, and loved every bite. Perhaps you are noticing a trend? While all of my comfort food is delicious, for the most part it's also simply prepared and vegetarian.

Gary and I are both trying to eat more organic food, and be socially responsible in our food choices. What does this mean? Basically, it means that we are trying to eat real food instead of "edible foodlike substances", and we won't eat meat unless it comes from an organic farm that raises and slaughters its own meat, such as Griggstown Farm or Simply Grazin (both in Princeton, NJ). Our general lifestyle change has been inspired by Michael Pollan's books (In Defense of Food, Omnivore's Dilemma, Food Rules), Foer's book Eating Animals, and food documentaries including Food Inc. and Fresh.

As a cancer survivor, it's important to limit any exposure to harmful carcinogens, and controlling what I put into my body is a critical step in my ongoing fight against a recurrence of carcinoid cancer. Now, if I drink milk - it's whole milk from grass-fed, hormone-free cows; if I eat a granola bar - it has only a handful of organic, easily-recognizable ingredients... I check labels, I do research, I make sure I know what I'm digesting. I think that every cancer patient should read and watch the above resources, so that they can learn what to eat in order to increase their (and the planet's) chances of survival. If you don't have time to read a book or watch a documentary, try using a mobile-tool such as "fooducate" (for the iphone) to help make healthier choices in the grocery store.

Wafels & Dinges NYC

We had an appointment with Dr. Nash yesterday, who thought the wound looked absolutely fantastic, but told us to keep packing it until it completely closes. He also said that I no longer need to follow a low fat, low residue, low fiber diet - but to take it slow.

So what was the first thing Gary and I did when we left Sloan-Kettering's Manhattan office? We hunted down this legendary Belgian waffle truck, Wafels & Dinges, for my first post-surgery taste of raw fruit: strawberries.

I ordered a liège wafel (soft / chewy) covered in fresh strawberries and a tasty addictive spread called speculoos, which has the consistency of smooth peanut butter but tastes a little like gingerbread and caramel. As they say in Belgium: mmmmmm .... lekker*!

Now, I don't necessarily think this sinful treat was what Dr. Nash had in mind when he said, "take it slow", but in my defense - he did say to gradually start incorporating fruits and vegetables back into my diet, so why not eat some strawberries in style?


*lekker = (Dutch) adv. deliciously, with wonderful taste or smell; adj. delicious, tasty

Breakfast at IHOP

Ok. IHOP is not exactly the best place for a low fat / low fiber / low residue diet. Sure, I could have had some turkey bacon and scrambled eggbeaters - but come on, who goes to IHOP for eggbeaters? Personally, I only go for one reason: crepes.

So before we went, I looked up a typical crepe recipe: 2 eggs, 3 cups milk, 1 1/2 cup flour, 1 tbs sugar, 1 tsp salt.... all things that are on my approved diet! Since I can't have fruits or vegetables, I reasoned that as long as I ordered the German crepes (lemon butter) instead of my usual Swedish crepes (lingonberry butter) I was well within my confines.

It was just like that old Bill Cosby skit in which he justifies feeding his kids chocolate cake for breakfast because he thinks about what's in chocolate cake and comes up with such nutritional ingredients as eggs, milk and flour (and gets into big trouble with his wife).

While plain pancakes are on my approved list of foods, delicious crepes fried and drenched in lemon butter are not (you are meant to avoid rich, fried food). I had two of these golden delights, and 10 min later needed to pop an emergency nausea pill. I'm still a bit queasy, and think I'll avoid IHOP for a while, but all and all - it was worth it.

First Non-IV Dinner

First solid meal: pasta, tapioca, tea, mashed potatoes


- Posted using BlogPress from my iPhone

Clear Liquid Diet

This is my first "mobile" blog entry. Last night I was treated to my grandmother's delicious homemade lasagna and Hoffman's ice cream with the Gozicks before topping off the evening with fresh squeezed lemonade on the Point Pleasant boardwalk.

Today, I start my clear liquid diet: Coffee (without milk); Ginger Ale; Jello; Juice (no pulp), Ice Tea

The purpose of the diet is to get my calorie count up while "eating" easily digestible food that won't leave any intestinal residue. It's a little strange because some items don't "look" clear (coffee) but are considered clear for the purposes of the diet.

This is my third time on this diet in the last four months, but the first time a nurse really explained it to me and said I could have coffee.

As long as I can have coffee, then the rest is a cake walk (bad idiom). It's a little like that scene in the movie "Airplane" when the flight attendant is explaining that there is no captain and the plane is crashing to a calm group of passengers who begin whispering, and then quietly announces: "and we are out of coffee" at which point absolute chaos breaks out. Never underestimate the power of caffeine (nor the comedic genius of Leslie Nielson).

Really, I have nothing to complain about...in a couple of months I'll be back to eating whatever I want; diabetics have a daily, life-long restrictive diet -- which is much, much worse.

- Posted using BlogPress from my iPhone

Post-Surgery Diet Restrictions

One of the big changes after Monday's surgery will be my restrictive diet (thank goodness it's a temporary change...I am Italian after all, and food is life and love all rolled into one delicious bite).

Here is a list of foods I can eat for the 4-6 weeks following surgery. Gary is an awesome cook - so if anyone has any great recipes out there, please send them along! Everything that I am allowed to eat is listed below.

Low-Fat, Low-Fiber Diet (aka mostly boring food)

Fats = low-fat or non-fat of the following items: margarine, mayonnaise, salad dressing, sour cream, cream cheese

Fruits = canned fruits, applesauce, a ripe banana, fruit cocktail

Meat and Meat Substitutes = tender beef, pork and lamb that are well-cooked and trimmed of any visible fat, skinless poultry, fish, eggs, low-fat tofu

Veges and Potatoes = well-cooked or canned vegetables without skin, lettuce, carrots, beets, asparagus tips, white potatoes without skin, string beans, tomato sauce

Soups = reduced-fat bouillon, broth

Beverages = coffee (THANK GOD), tea, apple or grape juice, cranberry juice

Milk Group = 1% or skim milk, low-fat peach flavored yogurt, low-fat ice cream without chocolate or nuts, low-fat cheese, low-fat pudding made with skim milk (no chocolate)

Breads = white bread or rolls without nuts, coconut or dried fruit; saltines, Oyster crackers, Graham crackers, waffles, pancakes, animal crackers, rye bread without seeds

Cereals and Grains = refined cereals such as Rice Krispies or Special K, farina, cream of wheat, white rice, grits, regular pasta, couscous

Deserts = low-fat plain cakes and cookies, gelatin, sherbet, hard candy, marshmallows, jellies or jams without seeds

Even eating from the above list of foods, I must stay under 40 grams of fat and 12 grams of fiber a day.

There are certainly some obvious meals: pancake with a ripe banana and a tablespoon of low-fat margarine; pasta and tomato sauce with asparagus tips; mashed potato with skinless chicken and string beans...but we are talking six weeks, 5 small meals a day = 210 meals to plan, so any creative recipes or snack ideas will be very, very welcome!