Saturday, December 31, 2011

Christmas Party at the Laurita Winery

Gary graduated from a small school, Spotswood High School, where he teaches today. He and his high school group of friends have remained close, and every year the McPartlands throw a wonderful Christmas party that gathers their old high school gang together. This year, the party was held at the Laurita Winery in New Egypt, NJ. (Yup - New Jersey has wineries too! In fact, according to a NYT article, NJ produces 412,000 cases of wine a year.)

The winery was enchanting, and had a wonderful private space upstairs for our gathering. Gary and I have already begun planning a return visit, to sit by the grand fireplace, sip wine, and chat the night away. The Laurita Winery is truly a little gem in Jersey.

NY Times Article on the Laurita Winery

“France was the renowned wine capital of the world,” Mr. Johnson said. “And then they started to do some good stuff in California. Then California took off. Long Island’s doing the same thing, and New Jersey will follow.” - Owner of Laurita Winery

Wednesday, December 28, 2011

Party Pleaser: Three Cheese Mini Mac

Gary filling up mini muffin tins with cheesy goodness
Last night, Gary and I went to a friend's Christmas party, and everyone had to bring an appetizer. Gary decided to try a new recipe from Food and Wine Magazine: Three-Cheese Mini Mac. They were fairly easy to make (with the exception of Gary having to go to Princeton at the last minute for mini-muffin tins), and were a real hit. I was amazed at how the mac and cheese kept their muffin-like shape, and just slipped right out when the tins were turned upside down. Below is the recipe for anyone who wants to make a nostalgic dish for a grown-up party - this is definitely not your kid's Kraft Macaroni and Cheese!

Food & Wine Magazine
Ingredients for Three-Cheese Mini Mac   
1/2 pound elbow macaroni
1 1/2 tablespoons unsalted butter, plus more for brushing
1/4 cup freshly grated Parmigiano-Reggiano cheese 
2 tablespoons all-purpose flour 
3/4 cup milk
4 ounces cheddar cheese, shredded (1 packed cup)  
4 ounces deli-sliced American cheese, chopped 
1 large egg yolk
1/4 teaspoon smoked Spanish paprika    

  1. Preheat the oven to 425°. In a large saucepan of boiling salted water, cook the macaroni until aldente, about 5 minutes. Drain, shaking off the excess water.  
  2. Brush four 12-cup, nonstick mini muffin tins with butter. Sprinkle with 2 tablespoons of the Parmigiano; tap out the excess.
  3. In a large saucepan, melt the 1 1/2 tablespoons of butter. Whisk in the flour over moderate heat for 2 minutes. Whisk in the milk and cook, whisking, until boiling, about 5 minutes. Add the cheddar and American cheeses and whisk until melted. Off the heat, whisk in the egg yolk and paprika. Fold in the macaroni.
  4. Spoon slightly rounded tablespoons of the macaroni into the prepared muffin cups, packing them gently. Sprinkle the remaining 2 tablespoons of Parmigiano on top.
  5. Bake the mini macs in the upper and middle thirds of the oven for about 10 minutes, until golden and sizzling. Let cool for 5 minutes. Using a small spoon, carefully loosen the mini macs, transfer to a platter and serve.
Make Ahead The recipe can be prepared through Step 4 and refrigerated overnight  
My girlfriend and I hamming it up before enjoying the fruits of Gary's labor... delicious!

Tuesday, December 27, 2011

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.

"Let Me Not Keep Christmas"

Christmas, 1978 - 4 years old

Let Me Not Keep Christmas, by Linda Felver

"Let me not wrap, stack, box, bag, tie, tag, bundle, seal, keep Christmas. Christmas kept is liable to mold. Let me give Christmas away, unwrapped, by exuberant armfuls. Let me share, dance, live Christmas unpretentiously, merrily, responsibly with overflowing hands, tireless steps and sparkling eyes. Christmas given way will stay fresh - even until it comes again."

Saturday, December 24, 2011

Evaluating New Doctors

US News and World Report recently published an article: 9 Signs You Should Fire Your Doctor. The article explains that an unhappy relationship with your doctor could damage your health care, and lists nine signs that you should look elsewhere for medical treatment:

1. You don't mesh. You and your doctor don't need to see eye to eye on everything, but it's helpful if you work well together.

2. He doesn't respect your time. You should never feel like he's "speed-doctoring" through an appointment.

3. He keeps you in the dark. A doctor should be open and thorough about both what tests he's ordering as well as the results.

4. He doesn't listen. It all comes down to communication and whether you feel like you're asking questions and they're not being answered.

5. The office staff is unprofessional. The receptionists are the link between you and the doctor.

6. You don't feel comfortable with him, or wonder about his competence. A sense of unease about his decisions and recommendations, even if you can't say exactly why, is also a perfectly legitimate reason for cutting the cord.

7. He doesn't coordinate with other doctors. Your primary care physician should be the quarterback of your health care team.

8. He's unreachable. A good doctor is available for follow-up questions and concerns.

9. He's rude or condescending. Your doctor should never trivialize your concerns as though they're not valid.

I've had some good doctors, and some really bad ones over the last two years. My dermatologist is an example of a fantastic doctor whom I meshed well with, who listened to me, and who carefully considered my symptoms in order to suggest an innovative approach to treatment. I found my dermatologist by first looking at the doctors listed in NJ Monthly's Top Doctor's edition and cross referencing the names with,, and - which are patient rating sites.

Unfortunately, my insurance didn't cover any of the endocrinologist recommendations by fellow 'noid patients, nor any of the endocrinologists listed in Top Doctors, nor any of the recommendations on the patient sites. Ultimately, I was forced to just go with someone on my insurance provider list. I already don't really like her receptionist... let's see how she does on the other "9 signs".

Sunday, December 18, 2011

A Very Helmetta Christmas...

Helmetta is a small town - population of 2,008, which is about 400 people more than the student body at the high school where I teach. But with a small town comes charming holiday traditions... like this one:

The weekend before Christmas, "Santa" comes to town...  police cars drive around the neighborhoods blasting Christmas music out of their bullhorn speakers to alert the neighborhood kids that the firetruck carrying Santa is not far behind. Like the siren song of an ice cream truck, kids hear the music and come running out of their homes to greet their hero in red, who gives them all a little present. It's a sweet iconic touch to a holiday otherwise filled with Black Friday and Super Saturday consumerism.

At our home, our Christmas tree is up and our penguin wreath on the door... Christmas break can't come soon enough.

Friday, December 16, 2011

Christmas 1976

A blast from the past... I am 2 years old in these pictures; we had just moved from the army base in Tacoma, Washington to my grandparent's home in Rockland, NY. My grandfather is the one dressed as the bank-robber-like-masked Santa, and the costume is still in the family - ready to scare the stuffing out of the next generation.

My dad, aunt and grandma ... this blue velvet couch is still in my grandparent's living room in Rockland
My mom and grandpa try to comfort me ... in my defense, that's one creepy looking Santa!

Saturday, December 10, 2011

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.

Thursday, December 1, 2011

An Italian Thanksgiving

My small contribution to dinner: Antipasto (marinated olives, prosciutto, mozzarella, artichoke hearts, provolone cheese, roasted peppers, ham, three types of salami); Manhattan Coffee Soda; and Rainbow Cookies.

88 years old and still a "leg man"
Before Thanksgiving break, I was in debilitating pain. Everyone at school pitched in, and somehow I managed with their help. In between the pain and teaching classes, I got quite a few surprise visits from seniors whom I taught last year. It was wonderful to hear their college stories, and I was truly humbled by the  fact that they were so excited to share their stories with me.

My Uncle Frank - cutting the bird

I slept most of Tuesday (after getting home from school and grocery shopping) and all of Wednesday... so by the time Thursday rolled around, I was feeling up to dinner at my uncle's house. It was a perfect meal - with all my family gathered together in one spot. We were even able to skype-in my mom, dad, sister, and dogs using my uncle's large screen Web-TV. (And yes, my mom actually held up each of the dogs in turn so I could see them)

This Thanksgiving, I am also especially grateful for the carcinoid community - and I draw on their love, strength, support and courage every single day.

My grandparents have been married for over 60 years - and at dinner, they were holding hands under the table.. so cute!
The Family (minus CA crew and 3 cousins who were running late)
Typical post-turkey chat between grandpa and Gary... the black and white picture in the background is of my great-grandfather (Sicilian immigrant) playing bocce ball