Channeling Jackie-O

Lenten Beauty

2012-02-25T03:57:00.000-05:00

On Ash Wednesday I was looking for something to give up. Chocolate was out of the question - I'm a Catholic, not a martyr. So I began thinking of an alternative.

Lately, I've been struggling with vanity. Now that my cancer worries have declined, I find myself increasingly concerned about the "worry lines"on my face... I don't like the pigment changes in my skin caused by the flushing, I hate the way my clothes hang; you name something about my physical appearance and I'll tell you what's wrong with it.

Vanity: otherwise known as "pride" under the seven deadly sins, or "hubris" in ancient Greek tragedies; irrespective of what you call it - being overly caught up in your own appearance is one ugly vice.

Then it came to me - what about giving up wearing make-up for 40 days? Wouldn't that help with this vanity thing? Wouldn't that make me be a better role model for the teenage girls I teach every day? It's not like I even wear a lot of make up to begin with - but what I do wear is corrective, so facing the world without it was such a jarring thought that it screamed Lenten sacrifice to me.

Then, I told my mom my idea. I thought she'd be all for it, but she simply responded, "Life is hard enough, why pile on more sacrifice? Why not pledge to meet the challenges you already have in your life in a more positive way, rather than creating new challenges for you to overcome?"

And my mom, a polio survivor, knows a lot about challenges and sacrifice. Her words made sense, and became even more clear as I spent the day with her at Reins Therapeutic Riding Stables - where she keeps and rides her horse Andy.

Giving Andy a Post-Ride Treat

Reins specializes in therapeutic riding for children and adults with all different types of physical and mental disabilities - and several of the stable volunteers are disabled themselves. I've been involved with the disabled community my entire life, so being at Reins is completely comfortable for me.

Mom and Andy

Watching my mom on her horse - pretty much riding without the use of her legs - reminded me what true beauty is... it's about being comfortable in your own skin, and doing what makes you happy - irrespective of what others might think. My mother has never let her disability paralyze her in life; she's always followed her dreams.

Whether I wear make up or not, is besides the point - it's what I chose to focus on... and for the next 40 days I'm going to so my best to celebrate the unique beauty that is mine.

February Break in CA

2012-02-21T21:40:00.000-05:00

Mom's Backyard Today:
74 degrees and sunny

I'm lucky enough to be back in paradise at my mom's house in Fallbrook, CA for February break. I have spent the last couple days lounging around with our dogs and hanging out with my mom, sister, and stepdad. Since Gary and I can't have dogs where we live... I'm really trying to soak in all the canine cuteness I can while I'm here.

My alarm clock...

Can you tell Bently stole Charlie's favorite toy?

My mom's backyard has several statues... including this little angel

Bently smelling the flowers

Lil and I picking some oranges in mom's backyard

A Love Poem...

2012-02-14T20:27:00.002-05:00

I shared this poem today with my seniors... it's one of my favorite "love poems" - Happy Valentine's Day.

Poem: "I Love You Sweatheart," by Thomas Lux
from New and Selected Poems: 1975-1995 (Houghton Mifflin Co.).

I Love You Sweatheart

A man risked his life to write the words.
A man hung upside down (an idiot friend
holding his legs?) with spray paint
to write the words on a girder fifty feet above
a highway. And his beloved,
the next morning driving to work…?
His words are not (meant to be) so unique.
Does she recognize his handwriting?
Did he hint to her at her doorstep the night before
of "something special, darling, tomorrow"?
And did he call her at work
expecting her to faint with delight
at his celebration of her, his passion, his risk?
She will know I love her now,
the world will know my love for her!
A man risked his life to write the words.
Love is like this at the bone, we hope, love
is like this, Sweetheart, all sore and dumb
and dangerous, ignited, blessed - always,
regardless, no exceptions,
always in blazing matters like these: blessed.

Puppy Love

2012-02-13T21:25:00.001-05:00

"Cheese" the Dachshund

I turned on the TV a few moments ago, just as "Cheese" - a long haired golden Dachshund - was prancing around the circle at the Westminster Dog Show. It made me smile, giggle and cry a little, all at the same time.

You see... on Saturday I'll be flying home to California to visit my family, and my dogs.

And while "the boys": Bently (Whippet) and Charlie (long haired black Dachshund) will be there, along with my sister's baby Lil (a tiny Chihuahua) ... my little girl Gretchen - a long haired golden Dachshund (who by the way looked remarkably like "Cheese" in her youth) - will be missing.

Gretchen died a few weeks ago, and for the first time in 16 years, I will not be greeted by her waggling tail (and I do mean "waggling" because she wiggled as she wagged), nor her deep throaty bark as I slide through the door with my luggage. The house will be different without her.

Perhaps it isn't a coincidence that the Westminster Dog Show is being held on the eve of St. Valentine's Day, for there are few things more wonderful than the love of a dog. In fact, my first word was not "mom" or "dad", it was "aboom" which was the name of our Westie. (Her real name was Abby, but "aboom" came pretty close for a toddler.) In a way, you could say that Abby was my first love... my first experience with pure devotion and unbridled joy. Abby and I were inseparable growing up, and I can honestly say that she was the best friend a little girl could ever want. It's true what Dean Koontz says in A Big Little Life: A Memoir of a Joyful Dog:

Abby and I - Enjoying Dad's Nightly Bedtime Stories

“No matter how close we are to another person, few human relationships are as free from strife, disagreement, and frustration as is the relationship you have with a good dog. Few human beings give of themselves to another as a dog gives of itself. I also suspect that we cherish dogs because their unblemished souls make us wish - consciously or unconsciously - that we were as innocent as they are, and make us yearn for a place where innocence is universal and where the meanness, the betrayals, and the cruelties of this world are unknown.”

Vedge Restaurant in Philly, PA

2012-02-08T20:18:00.001-05:00

Last Friday, Gary and I went to Philly for an early Valentine's Day dinner.

The last time we went into Philly, we had a wonderful meal at Barbuzzo Mediterranean Kitchen and Bar, followed by an amazing concert (Owen) at North Star Bar and Restaurant. When we came out of the bar, however, we found that our car had become part of a crime scene - and we ended up waiting hours before the detectives released it.

Our car is the silver Mazada; the black car with the bullet holes in the windshield belongs to a drug dealer involved in the shoot-out that we thankfully missed

Luckily for us, Friday's trip into Philly was all about the action packed flavors of Vedge, a new vegan restaurant, instead of the action packed streets of the "City of Brotherly Love".

Opened in Fall 2011, Vedge is an modern vegetable restaurant
by Philadelphia Chefs Richard Landau and Kate Jacoby

The dishes at Vedge are "globally inspired" but feature locally grown produce. The restaurant is tapas style and recommends 3 plates per person, which allows you to venture out and try interesting items you may otherwise pass up in favor of a "safe" entree. And trust me, you'll be grateful for the culinary freedom since Vedge has so many interesting sounding combinations, you're not sure where to start.

Vegan (no animal products at all including milk, egg, cheese, butter etc) sounds scary, and tasteless - but forget the tofu... Vedge focuses on flavorful vegetable concoctions, which are so wonderful that you don't even miss the usual hunk of meat that comes with most upscale dinners. We ordered two dishes off of their regular menu, and four dishes off of their "dirt list" - which is a daily rotation of dishes using only organic vegetables from nearby Lancaster farms:

- portabella cappacio, salsa rustica, arugula crema, olive oil, capers, crostini
- grilled seitan, black lentils and mushrooms, creamy horseradish, kohlrabi
- brussels sprouts, shaved and grilled smoked mustard (dirt list)
- crispy cauliflower, black vinegar, kimchee mayo (dirt list)
- grilled shittake mushrooms, soba noodle salad, menma, cucumber, cilantro, scallion (dirt list)
- black kale, grilled garlic, preserved lemon aioli, balsamic hazlenuts (dirt list)

brussels sprouts

Our favorite dishes were the portabella cappacio, brussels sprouts, and grilled sietan.

The portabella slices were firm in texture and tasted like soft, velvety veal - with a nice salty kick from the salsa and capers. The brussels sprouts were chopped rather than left whole, and slathered in a savory, smoky mustered sauce. The seitan (derived from the protein portion of wheat) was well seasoned and worked perfectly with the rich mushroom and lentil stew. (Why people eat tofu instead of seitan is beyond me; seitan is denser, "meatier", and more flavorful than tofu.)

If the main courses were a harmony of flavors - the desserts were Vedge's opus. (Note: the dessert small plates aren't as "small" as the entree versions - we ordered four dishes, but three is probably the magic number.) For dessert, we had:

- cheesecake, meyer lemon marmalade, clementine juice, blood orange supreme
- sticky toffee pudding, salted carmel, vanilla-bourbon ice cream
- apple cake fritters, waldorf salad, cider caramel
- ice cream trio: peanut butter and jelly - popcorn - strawberry cheesecake

The "best dessert award" was a tie between the sticky toffee pudding and the ice cream trio.

The sticky toffee pudding was reminiscent of a fluffy cinnabun, and the vanilla-bourbon ice cream on top gave it just the right hint of punchy flavor.

The ice cream trio (peanut butter and jelly, popcorn, strawberry cheesecake) was just plain wacky... and delicious. The creamy consistency not only tasted like the real thing - but delighted our taste buds in a way that usually only the best artisan ice cream can.

Vedge is definitely worth the drive to Philly, and one great romantic epicurean adventure.

Food for Thought

2012-01-24T15:38:00.001-05:00

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).

Mission Accomplished

2012-01-08T16:21:00.001-05:00

This weekend's trip was centered around one purpose: buying a dinning room table. We moved into our condo four years ago, and we have been looking for a dinning room table ever since.We had several near purchases over the years, but nothing quite perfect enough to invest in.One Saturday, we were eating at a restaurant in Chelsea Market, NY and fell in love with the restaurant's tables... They were thick slabs of reclaimed wood on metal welded legs.

After doing a bit of research, we found out that the tables were made by a company in VT called Vermont Farm Table, that builds their tables out of wood recovered from old Vermont barns.The concept of the company, along with the unique look of their tables, won us over -- so we drove to Vermont to talk to the owner, Dustin, who would be hand crafting our table.

He couldn't have been nicer, and with the help of his iPad, he walked us through all of our custom options, and showed us pictures of beautiful but dilapidated VT barns where the wood came from.

We decided to go with a rich, golden reclaimed Pine, and should get the table in 5-6 weeks... after so many years of looking, the relief of finding "the one" was well worth the 4.5 hr trip.- Posted using BlogPress from my iPhone

Ben and Jerry's Ice Cream Factory Tour

2012-01-07T11:50:00.001-05:00

I love ice cream ... wait, let me rephrase that: I worship ice cream. So when we discovered that the Ben and Jerry's Factory was only 30 min south of our hotel, it was a no-brainer that we'd start our day off with a trip to my Mecca.

We arrived at the Ben and Jerry's Factory just in time to take the 10:30 am tour, which was very impressive - and included a bird's eye view of the production floor. One of the things that we learned on the tour was that all of their ice cream is made exclusively with milk from Vermont dairy farmers who do not use growth hormones.

After our tour, Gary and I drove out to their "flavor graveyard"... where various flavors are forever "put to rest" - either because they flopped or because the ingredients became too expensive.Some of the flavors sounded amazing (especially the peanut butter and jelly ice cream)... If I was ever going to become a grave digger, this is the place I'd dig up!

- Posted using BlogPress from my iPhone

Marriott Residence Inn, Colchester VT

2012-01-07T11:27:00.002-05:00

We arrived at our hotel a little after midnight, and were pleasantly surprised with the accommodations. For $98 we had a spotless, well-appointed studio apartment, complete with a full kitchen. It was almost a shame that we were only staying for a few hours.

This morning, we enjoyed a complimentary breakfast, complete with a DIY waffle bar. While it was fun making my own waffle (without having any of the clean up), the waffle itself wasn't crispy at all, and tasted a lot like a warm, limp Eggo. Still, it was better than any other "continental hotel freebie" I've ever had.

Overall, the hotel was a GREAT bang for our buck.

- Posted using BlogPress from my iPhone

Crossing the Mid-Hudson Bridge

2012-01-07T09:55:00.001-05:00

On the way to Vermont...

- Posted using BlogPress from my iPhone

Kavos Gyros in Poughkeepsie, NY

2012-01-06T20:33:00.006-05:00

This weekend, Gary and I are on our way to Vermont to pick out a dinning room table. Then, we are heading to Canada.

As soon as we were on the road, our first order of business was to find a place for dinner in between NJ and VT, so I grabbed our copy of Roadfood from the back seat of the car... but for the first time, our trusted gastronomical guide let us down. Literally there was nothing listed along I-87 - just a long, lonely, squiggly line moving north along a barren page. Sorry eastern upstate NY - you're apparently a virtual Roadfood wasteland.

Changing tactics, I hopped on the Internet with similar frustration ... until I studied a map and determined that Poughkeepsie was close enough off of I-87 for a slight detour - I was certain that we could find something to eat there.

And find we did.

We needed something quick but local. (Our one cardinal rule while traveling is: no fast food or restaurant chains.) TripAdvisor, Yelp, and Urbanspoon all gave ridiculously high ratings to a little gyro place called Kavos, so we decided to give it a try.

The gyros were awesome. If you've never had a gyro, they are sort of like a Greek version of an overstuffed soft taco.

I had a gyro with hummus, carrot-cabbage slaw, tabouli and pork (pictured below), and Gary had a gyro with roasted red peppers, caramelized onions, goat feta and garlic arugula.

The flavors in my gyro worked well together -- the pork was slightly sweet and smokey, the hummus was rich and creamy (but not too heavily applied), and the entire flavor profile was brightened by the carrot-cabbage slaw and tabouli (which is a fresh, finely chopped salad of tomato, cucumber, parsley, mint, garlic, onion, olive oil and lemon juice).

We also ordered a side of fries with oregano, lemon and sea salt. The fries were the thick cut kind, which I like, but a little dry. Gary and I both loved the oregano and lemon, but we couldn't taste the sea salt... with ketchup they were perfect.

We did, however, have two "non food related" complaints: 1. No bathrooms, and 2. Only 8 tables (seating for 16) and half of the tables (like ours) were made out of wire... so the juices from our gyros seeped through the holes in the table, and got all over our pants.

We left Kavos with happy bellies, anticipating the bathtub jean scrubbing awaiting us just a mere 4 hrs and 27 min. down the road. - Posted using BlogPress from my iPhone

Christmas Party at the Laurita Winery

2011-12-31T16:42:00.002-05:00

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

Party Pleaser: Three Cheese Mini Mac

2011-12-28T18:35:00.006-05:00

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

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.
Brush four 12-cup, nonstick mini muffin tins with butter. Sprinkle with 2 tablespoons of the Parmigiano; tap out the excess.
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.
Spoon slightly rounded tablespoons of the macaroni into the prepared muffin cups, packing them gently. Sprinkle the remaining 2 tablespoons of Parmigiano on top.
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!

WNCAD Wrap Up: 2011

2011-12-27T23:12:00.015-05:00

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"

2011-12-27T10:13:00.000-05:00

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."

Evaluating New Doctors

2011-12-24T13:58:00.001-05:00

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 vitals.com, ratemds.com, and healthgrades.com - 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".

A Very Helmetta Christmas...

2011-12-18T15:21:00.000-05:00

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.

Christmas 1976

2011-12-16T22:14:00.002-05:00

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!

New Doctor - New Diagnosis

2011-12-10T14:24:00.015-05:00

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.

An Italian Thanksgiving

2011-12-01T21:14:00.002-05:00


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

Peck Slip Pickle Festival - NYC

2011-11-25T00:44:00.003-05:00

View from New Amsterdam Market

Last weekend, Gary and I met my SF friend Amanda (who now lives in Portland) at the New Amsterdam Market in NYC for the Peck Slip Pickle Festival. This was the first time Gary and I had ever visited the New Amsterdam Market*, which is a weekend-outdoor marketplace under the shadow of the Brooklyn Bridge that features local vendors who support regional agriculture. Some of my favorite vendors that set up shop at the New Amsterdam Market are Blue Bottle Coffee (originated in SF Ferry Building) and the Bent Spoon (Princeton fame).

This weekend was special; in addition to the regular vendors, there were additional vendors featuring... you guessed it - pickles.

Pickles Were the Star of the Weekend's Market

One of the best things at the Pickle Festival was the McClure's Pickles stand - and we all absolutely loved their Spicy Bloody Mary Mix and Dill-Garlic Potato Chips... a dangerously delicious combination.

Gary and Amanda Talk to One of the Vendors: McClure's Pickles

Regular Vendors Sold Out within a Few Hours of Opening

Of course, there were more than just pickles to be sampled - and I stocked up on homemade Mexican chocolates from a local bakery.

It was such a fun way to spend an afternoon with a very missed friend. Gary and I will definitely return to the New Amsterdam Market - when the weather gets a little warmer.

Good Links

A Look at New Amsterdam Market - Serious Eats

The Top 10 Lunches at Farmers' Markets - Bon Appetit

Power Picnics - NY Post

2010 30 Under 30 List: Joe McClure (McClure's Pickles)

* The New Amsterdam Market takes place rain or shine every Sunday from 11am to 4pm in front of the Old Fulton Fish Market on South Street & Peck Slip in Lower Manhattan.

Medical Time Line Tool

2011-11-13T10:29:00.004-05:00

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

click on image to see a larger version

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

Loose Pages Ladies Book Club

2011-11-13T09:53:00.003-05:00

New School Meets Old School

My friend Jean at work started a ladies book club with a few other teachers from school. I created a blog for the group, and dutifully read (ok skimmed at times) our first pick: The House of Sand and Fog by Andre Dubus III. The book was pretty depressing; without giving too much away, I'll just say that none of the characters manage to survive the ugliness of their lives fully intact.

Friday was the first meeting of the "Loose Pages Ladies Book Club", which was my first real "social" event outside of school. To be honest I was a little nervous at first, but as soon as I entered that inviting, cozy room, all of my uneasiness melted away. The fact is that I really like all of the women in the club (and our honorary member Cinder the dog), and they immediately made me feel right at home. The evening was delightfully warm and filled with laughter - a drastic juxtaposition to the novel's tone and themes.

Our host, Mary Pat, was the epitome of graciousness and prepared a spread fit for queens, including delicious cheeses, grapes, dips and chips... followed by fruit, brownies and Italian cookies. She even had personalized bookmarks made for each of us.

As we sat around the glowing fireplace sipping our wine, we talked a little about the characters in the book and a lot about the characters in our own lives. I guess that's one of the reasons why I love books so much - they can transport us to previously unexplored parts of the world, human nature, and ourselves... and having people to share the literary journey with makes the discoveries along the way that much more exciting.

I'm really looking forward to our next meeting in December... especially since my friend Stella, who is also Italian and can cook like nobody's business, is hosting it. Guess I need to start reading our next selection - Skipping Christmas by John Grisham. At least it's about 200 pages shorter than the first book. (Great, now I sound like one of my seniors!)

Beyond myself,

somewhere

I wait for my arrival

Epigraph to The House of Sand and Fog; From "The Balcony" by Octavio Paz

NET Cancer Awareness Day is Tomorrow!

2011-11-09T21:17:00.008-05:00

November 10th is NET Cancer Awareness Day.

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

We need your support!

Halloween Treats

2011-11-06T13:48:00.002-05:00

"Cinderella" - Halloween 1976

At school, we have a tradition of allowing the seniors to dress up on Halloween (which is even that much more of a treat for them because the rest of the grades have to wear their school uniforms). Since school was canceled Monday (Halloween) due to the weather, seniors had to wait until this past Friday to wear their costumes.

The great thing about Halloween at PC is that everyone dresses up - not a single senior wears a uniform that day, and the creativity is overwhelming.

Halloween is my favorite holiday; there aren't any romantic expectations attached to it or a big price tag - just the fun of playing dress up and being rewarded in chocolate for your efforts. We all wear masks; Halloween is a time when our masks are of our own making, and not those we feel compelled to wear out of insecurity or shame.

"Angel" - Halloween at PC 2011

Halloween gives us complete freedom to morph into a new identity and use our imaginations. As we grow older, we are so busy with trying to keep up with credit debt, and family obligations, and job duties, and the latest technological advances that the simple power of "pretending" is lost. This is why, for me, Halloween is so wonderful. It is a purely self-indulgent holiday, filled with giggles and smiles from children and adults alike. It's ironic that Halloween is the one day when everyone looks crazily different, yet everyone is unconditionally accepted for how they look... if only every day were more like that.

Having a snow-day on Halloween made the holiday that much sweeter, and I used the extra day off to treat myself to a lazy day of grading and watching a fantastic "B" movie: Bubba Ho-Tep, which I absolutely loved.

Bubba Ho-Tep is an unlikely buddy movie that tells the tale of two nursing home residents - one who believes he's JFK (Ossie Davis) and the other who believes he's Elvis (Bruce Campbell) - as they battle an ancient Egyptian mummy that is sucking the life out of the near-dead elderly residents. It's quirky, off-beat, and delightful - and served as the perfect ending to a strange and wonderful "winter-white" Halloween in Jersey.

The Dalai Lama on Health...

2011-10-29T20:22:00.002-04:00

Pictures from October NJ Snow Storm

2011-10-29T18:46:00.016-04:00

Despite the snow, we ventured out to grab some breakfast at the diner... here are some pictures of our first snow storm of the season - and it's not even Halloween yet!

Rainbow Brite and Wordsworth

2011-10-23T14:12:00.020-04:00

Rainbow Over Our Condo - October 20, 2011

Rainbows apologize for angry skies. - Sylvia A. Voirol

As it just so happens, last week I was having a really pain-filled day (the kind where I can hardly move without feeling like my entire body is in a giant vice - and my bones are getting slowly crunched together).

It was also raining.

During my hour-long commute home from school, the fog and rain were so terrible that I could hardly see. I have to say that between the pain and the weather, I was feeling pretty glum. About 5 minutes from home, the rain stopped; and as I pulled up to our condo, a beautiful rainbow appeared.

Along with every cliche rainbow saying in the book, Wordsworth's poem sprang to mind... and Rainbow Brite (one of my sister's favorite cartoons). Say what you will - Rainbow Brite and Wordsworth were on to something...

 My heart leaps up when I behold
       A rainbow in the sky:
   So was it when my life began;
   So is it now I am a man;
   So be it when I shall grow old,
       Or let me die!
   The Child is father of the Man;
       I could wish my days to be
   Bound each to each by natural piety.
(Wordsworth)



"Hey glum face, the next time there's a rainbow, look up.
You'll feel better."
(Rainbow Brite)

Baking My First Apple Pie - From Scratch

2011-10-16T19:55:00.030-04:00

Last weekend, my friend Michelle was kind enough to teach Christine and I how to bake an apple pie from scratch. Michelle is a legendary cook, and can out bake southern belle Paula Deen in a pie contest with one hand tied behind her apron...

So the day started off where any great pie should - in the orchard, picking our own apples.

Next, the cooking class began in Michelle's kitchen. As Michelle supervised Christine and I making our pies, the guys gathered in the living room to watch football and snack on a cheese plate, complete with homemade spiced pumpkin seeds, bread, and chutneys (of course deliciously made by Michelle).

Then, my pie went into the oven while we all enjoyed apple cider and other libations. (Christine took her pie home to bake.)

"Now all that's left is to put it on the windowsill for a hobo to steal" - our friend Chaya after we pulled my pie from the oven.

Half of my pie was eaten at Michelle's house, and Gary and I took the other half home. The next morning, I had the best fall breakfast in the world: a warm piece of homemade apple pie with two scoops of Ben and Jerry's limited edition pumpkin cheesecake ice cream.

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

2011-10-15T11:29:00.006-04:00

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

Gov. Christie Proclaims November 2011 to be "Neuroendocrine and Carcinoid Cancer Awareness Month"

2011-10-13T11:03:00.026-04:00

Last Friday, Gary and I spent the day at Sloan-Kettering, which consisted of a CT scan, a follow-up appointment with Dr. Nash as well as a second appointment with my new oncologist Dr. Reidy Lagunas.

For CT scans, you have to arrive an hour early to drink 25ml of oral contrast and get your iv.

As I was sipping away on my artificially raspberry-sweetened concoction, I decided to send an email to Liz Ortiz in Governor Christie's office to see if any progress was being made in procuring a Proclamation for NET Cancer Awareness:

From: Marlena Johnston
Sent: Friday, October 7, 2011 10:31 AM
To: Liz Ortiz
Subject: Proclamation Draft Language: Neuroendocrine Cancer Awareness Day (11/10/11)

Hi Liz,

I am sure that you are very busy, but I was hoping to get a status update on my request for a proclamation from Gov. Christie declaring November 10th Neuroendocrine Cancer Awareness day in NJ.

Given the sad fact that Steve Jobs died Wed. from a neuroendocrine cancer of the pancreas, I feel the time is now for the Governor to help further raise awareness about this rare disease.

The following governors have already issued proclamations declaring Nov 10 2011 NET Cancer Awareness Day:

Gov Fallin (Oklahoma)

Gov Barbour (Mississippi)

Gov Hickenlooper (Colorado)

Gov LePage (Maine)

I sincerely hope Gov. Christie is soon to join them.

Thank you very much,

Marlena Johnston

channelingjackieo.blogspot.com

Yesterday, I got a call from Jeanne Ashmore, Director of Constituent Relations at Gov. Christie's office, with great news - Governor Christie signed a Proclamation declaring November 2011 as Neuroendocrine and Carcinoid Cancer Awareness Month.

In addition to my badgering, the NJ Carcinoid Cancer Network also helped to get this important Proclamation issued. Below is a PDF version of the Proclamation; Ms. Ashmore said she would put a hard copy of the Proclamation in the mail for me today.

I wish I could say that my latest doctor appointments yielded similar concrete results. Basically, I've been going through more of the same - no one seems able to pin-point the cause of my "constellation of symptoms".

The Oscan results came back pretty much normal - some uptake in thyroid (to be expected) and right abdomen (probably scar tissue from surgeries). My blood work has the same flags - but nothing too alarming.

New blood work confirmed that my night sweats, fever flashes and flushing aren't due to pre-menopausal hormone changes. Dr. Nash discovered that I've developed an incision hernia, and the CT revealed that I have a new ovarian cyst which needs further testing. (My mother's first question - is it the same ovary that I had surgery on last year? Good question mom. Didn't even ask which ovary it was.)

Next Tests:
Oct - follow up with GYN on ovarian cyst and sonohysterogram
Nov - heart stress test
July - regular CT scan and follow up with Dr. Reidy Lagunas

Next Steps:
Research homeopathic remedies for pain
Research Essiac (alternative cancer and immunity treatment)
Make an appointment with a rheumatologist for bone pain
Attend regular yoga classes and other meditative exercise

Think Different...

2011-10-10T16:11:00.032-04:00

Gary had a wonderful idea of using Apple's slogan "Think Different" to promote NET cancer awareness and advocacy. The above picture is my first attempt at incorporating the two campaigns.

Additionally, some of my students are going to try to adapt the "Think Different" video below for NET Cancer Awareness Day (Nov. 10th).

While Steve Jobs decided to downplay his cancer diagnosis, the sad fact is that he had (and most likely died from) a pancreatic NET cancer... perhaps his determination to look at the world differently - as a world full of endless possibilities - will help encourage medical professionals to broaden their purview when faced with NET symptoms, especially since the average NET cancer patient waits 5-7 years before receiving the proper diagnosis.

The NET / Carcinoid community has been challenging the medical world to "think differently" about NET cancers for years. Below is an explanation from the Carcinoid Cancer Texas Survivors (CCTS) website about why zebra stripes are the chosen pin "color" for NET cancers.

Why the Zebra?

When medical students are going through their training they inevitably hear the phrase: "When you hear hoof beats, think horses, not zebras."Basically this helps to illustrate the strategy of initially diagnosing the more usual diseases or problems when a patient presents with symptoms.

An all-too-common scenario for many patients with Carcinoid, however, is one where a proper diagnoses is not made for a period of time . . . very often those with Carcinoid Syndrome are diagnosed with IBS or Crohn's Disease or perhaps even allergies or heart disease, before finally the correct diagnoses is made.

Some of our expert physicians have been heard to state therefore that in the case of Carcinoid, the patients ARE the Zebras . . . the more unusual . . . and NOT the horses! One of our more colorful Carcinoid Expert Physicians is well known for telling Carcinoid patients not only are we the Zebras, but we have pink stripes with purple spots!

And so we proudly embrace our ZEBRA STRIPES!!

Think Different * NET Cancers

What Really Killed Steve Jobs?

2011-10-06T22:50:00.026-04:00

Yesterday, the iconic Apple founder Steve Jobs died.

He was 56 years old, worth billions of dollars, and liked black turtlenecks.

He transformed the world of technology, and ran a shrewd corporate empire that managed to make $1,300 computers and $200 phones an American household necessity - in a world where 1.4 billion people live on less than US$1.25 a day.

Despite the media reports, Steve Jobs did not die of pancreatic cancer.

He did not have pancreatic cancer - he had a neuroendocrine tumor (NET) in the islet cells of his pancreas. NETs are not a "rare form of pancreatic cancer" - they are a different disease all together... one that Jobs and I share.

NET cancers are rare, can occur in several organs in the body, and behave differently than any other type of cancer out there. They are so rare in fact that their "cancer ribbon" is zebra striped - to remind doctors that when they hear hoof beats don't just think horses, also consider zebras.

When Steve Jobs died, an unprecedented opportunity to raise awareness and support for the NET community died with him.

Last year was the first Worldwide NET Cancer Awareness Day (Nov. 10th), and I actually wrote to Steve Jobs, asking for his support... I didn't get a reply; I wasn't really expecting one. Still, that was one "launch" I wish he would have shown up for. I hope the financial stability of Apple stock was worth the price of his silence.

A Big THANK YOU To the News Guys Who Got it Right:

San Francisco Chronicle: Steve Jobs Waged Eight-Year Health Fight After Rare Cancer Diagnosis (October 6, 20011)

NPR: With A Spotlight on Jobs, Time To Talk About Cancer (August 25, 2011)

The Importance of Hair

2011-09-30T18:07:00.078-04:00

My New Hairdo 9/28/11

Hair is important... just ask any guy spending $19.95 a month on rogain, or the average woman who spends well over $100 every 5 weeks for a cut and color (don't even get me started about the additional cost of a blowout).

Millions of dollars are spent every year in salons and on styling products, and networks are starting to create reality TV shows (e.g. Tabathas Salon Takeover; Shear Genius) that showcase the "real" trials and tribulations of bobs and bangs. Even Sarah Palin's hair salon is getting its own series: Big Hair Alaska, "where the personalities of the owner and her staff are as big as the hairstyles they create."

Why all the fuss?

Hair has long been considered a source of mythological and cultural strength. Some Native American tribes believed that scalping was a way to capture their enemy's strength. In the Bible, Samson is granted unimaginable physical strength by God on the condition that he never cuts his hair. (Samson of course loses his power when Delilah finds out his secret, and has his head shaved.) Even today, certain faiths still forbid their followers to cut their hair, such as Amish women and Sikh men.

Hair is important... just ask any cancer survivor who has gone through the trauma of losing it.

I've been a frequent flyer at different cancer centers these last 15 months, always with a full head of hair. While I am grateful that carcinoid cancer really doesn't have a treatment path that leads down the way to baldness ... my locks always make me feel like a bit of an impostor - like a weak warrior on a battle field of combat veterans who wear their shiny bald heads (delicately lined with thin blue veins, wrapped in colorful silk scarves) like fierce battledress.

In the new Seth Rogen comedy, 50/50 (opening this weekend) two 20-something bosom-buddies find out that one has cancer - with a 50% chance of survival. The trailer plays a familiar scene in which they use a "questionably clean" set of body trimmers to shave off the one friend's hair, before the chemo and radiation can melt it away.

This film scene isn't fiction for one of my seniors - Tim - who did the same exact thing, two years ago. (Except he used very clean trimmers of course!)

In tenth grade, Tim was diagnosed with advanced stages of Hodgkins Lymphoma, and had to complete the year through home-tutoring and painful cancer treatments. He returned his junior year and organized the first ever PC Relay for Life, which raised over $43,000 dollars for the American Cancer Society. He and I were the speakers at Relay's opening ceremonies, and formed an instant bond. We were both thrilled that he was in my English class this year, and for the past two weeks, we have been working on his college essay.

Tim started his college essay with a memory from the day his pediatric oncologist told him, "you have cancer" for the first time. At this point, his immediate thought did not turn to the fear of dying, but to the fear of going bald. Apparently, Tim was absolutely obsessed with his hair and couldn't imagine living without it. Eventually, he decided that he needed to be the one to take his hair - not the cancer... so first he gave himself a Mohawk, and then he shaved his head.

Having the privilege of getting to know this young man, I can unequivocally state that Tim's spirit and strength could outmatch a follically endowed Samson in any battle - any day of the week.

So I think the mythology got it backwards. Hair in and of itself does not pass along secret powers to its owner... rather it is the act of losing one's hair in a deadly, knockdown-dragout fight against an invisible enemy that makes one truly heroic.

Life is Too Short for Self Hatred and Celery Sticks - M. Wann

2011-09-28T18:10:00.020-04:00

Bent Spoon in Princeton
September 24, 2011

Saturday, Christine (the lovely girl with the flower) completed her first 80 mile bike race; a particularly awe-inspiring accomplishment in my eyes since I can't even ride a bicycle. I can, however, eat ice cream while basking in the joy of my friends... which is just what I did.

"Seize the moment. Remember all those women on the Titanic who waved off the dessert cart." - Erma Bombeck

Teaching About 9/11 (in English Class)

2011-09-18T14:04:00.027-04:00

During my senior of high school, my mother, sister and I moved to an orange farm in Ojai, CA; before that, we lived in Ridgewood, NJ in Bergen County. Three years ago, I moved back to NJ and began teaching English at Paramus Catholic HS - just a few miles away from where I grew up... a full circle.

Bergen County is a suburban area that is heavily populated by Manhattan commuters; and before my family's cross-country relocation, both my parents worked at what's now known as ground zero. Sadly, many of my students lost family members in the tragedy.

The beginning of our school year always inevitably corresponds with the anniversary of 9/11. This year, we had orientation on Thursday (September 8th) and started classes on Friday - two days before the 10th anniversary of when everything changed in America.

While I could have spent the first day of classes jumping right into Unit 1 - an introduction to the ancient texts of Mesopotamia, I felt it was important to recognize the magnitude of 9/11.

After I began the class with a prayer - remembering all those affected by the terrorist attacks, I asked students to raise their hands if they had ever read The New Yorker before - not one of my 118 seniors raised their hands.

I explained that The New Yorker is basically a literary magazine, filled with a datebook, cartoons, short stories, essays, fiction and poems; and that it would provide an important literary voice for reflecting on the 9/11 attacks. Then, I passed around my advance copy of The New Yorker's 9/11 edition (reason #637 why I'm not a Kindle fan - passing around a Kindle version of The New Yorker to students whom had never seen it before just wouldn't be the same).

I then read from an essay in the magazine's 9/11 edition: "Speechless", by Jonathan Safran Foer.

Literary Non-Fiction Essay

"Speechless" starts with a personal anecdote - the author recalling his young son crawling into bed with him and his wife after having a nightmare. When the author asked his son what the nightmare was about, his little boy was at a loss for words:

"At the time, I thought he didn't want to describe it: putting a nightmare into words - saying it aloud and sharing it - would only expand the terror. But I've come to wonder if he simply didn't possess the vocabulary. And if that failure of language was at least part of the problem."

The author uses his son's inability to articulate what was so frightening about his dream as a metaphor for his own inability to explain what it was like living in New York on 9/11:

"How could this world be so unlike the world that I believed I was living in? I can't describe it. Do I not want to describe it, or do I simply not possess the vocabulary?"

(Here - I snuck in a quick review of metaphor v. simile.)

The piece concludes with a reflection on the power of language - not only to make sense of the senseless, but as its own form of heroism:

"Is there anyone who hasn't played out the nightmare of having been trapped in one of the towers? Is there anyone who hasn't wondered if he would have had the superhuman composure to call and comfort a loved one? Dozens of phone calls home were placed from the towers between the moment that the first plane hit and the time that the north tower collapsed. When words should have been most impossible to find, there were words of grace, and dignity, and consolation. Words of fear, and words of love. There's nothing to learn from this, except everything."

After we discussed "Speechless" and the importance of having the "vocabulary" to adequately tell our own stories, I asked the class if anyone had seen photos of the planes crashing into the towers. This time, every hand went up. The fact is, you couldn't turn on a television leading up to the 10th anniversary without feeling like you were trapped in a time warp - the newsreels looping a never-ending reminder of terror.

I then asked my students if any of them knew what the City was like immediately following the attacks... none of them did.

First-Hand Account (Interview)

I then shared an interview of a 16-year-old girl that I heard on the radio on the way to school that morning. She was asked what she remembered most as a 6-year-old living blocks away from ground zero. Ash. She remembered ash covering everything - and how she begged her parents to buy her a purple plastic umbrella that she carried with her outside every single day for three years. She also said that she taught herself to read, just so she could read the weather report every day - so she would be prepared if something like this ever happened again.

I told my students that when I first heard the interview, I didn't make the connection - but then it dawned on me. This little girl associated an environmental change (ash) with panic and sadness. She didn't see the towers crashing, and had no way of linking cause and effect; all she knew was ash was falling from the sky - like rain - and if she had some advanced warning when the ash was coming again, she could feel in control of her situation.

Poetry

Then I lead a brief discussion about how poetry could also be a way to gain a sense of control through self-expression. Next, I held up the tenth anniversary edition of Poetry After 9/11, An Anthology of New York Poets, and I read a short excerpt from the Forward, written by editors Dennis Loy Johnson and Valerie Merians:

"There were, in the immediate aftermath, poems everywhere. Walking around the city you would see them - stuck on light posts and phone stalls, plastered on shelters at bus stops and the walls of the subway stations. In neighborhood newspapers the letters-to-the-editor pages were full of them. Downtown, people scrawled poems in the ash that covered everything. And on brick walls of police stations and firehouses, behind mountains and flowers and between photos of the dead, poetry dominated... Prose wasn't enough. There was something more to be said that only poetry could say. Everybody, apparently, knew this."

We then discussed as a class what the editors meant by: prose wasn't enough. (Here, I managed to sneak in a mini-lesson about genre, and the relationship between form, purpose and audience as well as the importance of cultural context in analyzing literature).

Finally, I shared one of my favorite books - which isn't a book at all in the traditional sense... rather it's a book of postcards entitled Haiku on 42nd St, A Celebration of Urban Poetry & Art . Each postcard is a photograph of a haiku poem that found its way onto one of the empty porn marques of Times Square.

After shocking the socks off of my students by describing how Times Square used to be a very different place (filled with shady hawkers, prostitutes and drug addicts - not $200 show tickets, strolling tourists and sidewalk seating), I defined the word "gentrification" and briefly mentioned some of the mixed social connotations of the word.

Holding up my postcard book, I explained that the photographs captured a moment of transition in Time Square's history - just before one of the most dangerous areas in NYC became one of the most sought after tourist destinations in the world. Perhaps these unsolicited haikus were one last rebellious dare - challenging the magical land of Oz (or Wicked) that was soon to follow.

For homework, students were asked to brainstorm about a moment of change in their own lives that they might use for their college essays. I reassured them that their "moment" didn't have to be as dramatic as 9-11, it just needed to provide a little snapshot of their character for the admissions officers to see.

I will end this blog the same way I ended my first day of 12th grade World Literature classes - with two 5-7-5 snapshots of New York City ...

9/11: Remember * Honor * Reunite.

Additional 9/11 Links:

Gathering Place - remembering those with disabilities on 9/11: This blog reflection is especially powerful for me, because my mom is disabled and this was one of the first things she said after the planes hit ... "what about the gathering place?" I didn't get it - she did. When you are disabled you are supposed to wait at a certain location for help in case of an emergency - all those people with disabilities (save one blind person whose dog led him out) died at the designated "gathering place" waiting for help that never came.

Baseball symbolized resiliency after 9/11: The nation turned to baseball after 9/11 for a sense of normalcy and healing; this article captures some of the incredible moments - including Fenway Park's famous 7th inning stretch when the entire stadium erupted in "New York, New York" during their first home game against the Yankees after 9/11.

National September 11 Memorial (WTC): A guide to a national tribute of remembrance and honor to the 2,983 people killed in the terror attacks of September 11, 2001 and February 26, 1993.

Prayers, Vigils, Remembrances Mark 9/11 Anniversary: A listing of events in Washington, PA and NY to remember the victims of the 9/11.

The Sept. 11 Attacks, Remembered - PICTURES: A series of pictures of international and national remembrances.

For My Teacher Friends... Concepts Taught In This Lesson

Vocabulary: gentrification; connotation
Literary Terms: simile; metaphor; genre
Writing: relationship between purpose, form and audience; cultural context; voice
Poetry: haiku, postmodernism
Big Idea: there is nothing more important than stories - and nothing more powerful than having the ability to skillfully tell our own stories to others

Organizing Classroom 1204

2011-09-10T07:29:00.003-04:00

My new classroom's "before" pictures...

Just add "interior designer" to my job description...

It's official. The first day of school was Friday.

For the past two weeks I've been setting up my new classroom, which is located in a part of the building aptly nicknamed "The Tower" - mainly because there are only two rooms on the entire floor (part of the old priests' residence), which are up two flights of stairs - completely inaccessible from any other part of the building.

My new and old digs are in sharp juxtaposition. My old room was next to the cafeteria and doors leading out to our fleet of buses - which meant that every single one of our 1570 students had to walk by my classroom on a daily basis. By contrast, in "The Tower" - there are never more than 60 people on the floor at any one time.

At first, I had mixed feelings about the move, but there is a quiet calm about the room that I've come to embrace. Moments before my first students arrived, I added the final touches of "clean linen" scented oil diffusers and air fresheners, which seemed appropriately metaphoric (hey, I'm an English teacher)... time for a fresh start with a brand new set of 116 seniors.

Cue Rocky Theme Song.

Below are some additional classroom makeover pictures; just hit the "play" button on each collage...

This collage made with Smilebox

Digital collage generated with Smilebox

Big Gay Ice Cream

2011-09-03T19:52:00.027-04:00

(picture from NY Examiner article)

If you've never heard of a "salty pimp" before - you've probably never heard of the Big Gay Ice Cream Truck in NYC either. Thanks to our friend Christine (a fellow ice cream aficionado), the truck has been on Gary's and my radar for a long time - but they usually are only "rolling" on weekdays, so we've never been able to catch up with them. Today, however, was the grand opening of their Big Gay Ice Cream Shop - eliminating the need for weekly location Tweets and daily Facebook status updates.

We were in the City this morning anyway, so obviously, the logical thing to do was to walk 10 blocks and wait an hour in line to finally taste their iconic cone (salty pimp): vanilla soft serve, covered in dulce de leche sauce, sprinkled with sea salt, and dipped in chocolate.

Overall, I have to rate the ice cream a solid B. It was good, but all the flavor was in the topping... the ice cream itself was nothing more than Dairy Queen vanilla. While I'm glad that we finally had this NYC treat, it wasn't exactly the same ordering a salty pimp in a shop adorned with unicorn murals - instead of from a Good Humor truck on rainbow colored steroids. Perhaps these crazy inventive ice cream toppings (toasted curry coconut, pumpkin butter, key lime curd, wasabi pea dust, elderflower syrup) are more awe-inspiring when they come out of a slide window on four wheels rather than a brick and mortar shop. For my buck - I'll stick to the Wafels & Dinges truck, until something better rolls along.

Six Years After Hurricane Katrina

2011-09-02T08:32:00.007-04:00

Monday was was the 6-year anniversary of Hurricane Katrina, which hit the Gulf Coast on August 29, 2005.

In the summer of 2006, I went to New Orleans with a dozen other Marianist volunteers to help with the rebuilding efforts. The devastation was unfathomable. I recently came across some papers from that trip, including a catalogue of items found in the first house I ever helped to rebuild... the list speaks more to the tragedy than anything I could write here.

List of Items Found in Home - Lower Ninth Ward (June 23, 2006)

unopened prison letters - marked "censored by staff"; "Vote for Kerry" campaign button; insulin needles; soaked polaroids of small children; rosary beads; mardi gras beads and coins; baby shoes; bible; rotting food in the refrigerator; bail bond receipt; IOU note for $195; small batman action figure; heart shaped wood block with two little boys on it; David and Goliath picture book; a plastic bag on the door with a picture of a family sitting on the lawn; china - some broken; baby shampoo; coats and dresses stuck together with mold; The Joy of Signing: The Illustrated Guide for Mastering Sign Language; candle sconces; bills - some marked paid, some not; a purse with a social security card in it; cards from grand kids; insurance papers; 1 tie.

We salvaged what we could, and the rest was thrown out with the gutted mold encrusted drywall and cockroach infested floor boards - until nothing was left but the house's frame... an entire family history of love and heartbreak, washed away by the storm.

As I was working, I couldn't help but worry about the fate of the family member who was in prison. I knew that most of the New Orleans prisoners had to be moved last minute when Katrina hit, and were haphazardly scattered across jails in several states - without clear records of placement. For example, one college kid - who had been in an overnight holding cell for public intoxication - was "lost" in a TX jail for nearly 4 months before he could be processed and released. Also, many of the court files in NO were not electronic, and were damaged in the flood - a litigator's nightmare. These violations of due process were almost wholly ignored by the media - I only knew about them through a fellow social justice worker, Bill Quigley, who is a Loyola University law professor in New Orleans. As I brushed off the prison letters and moved them to the "keep" pile, I felt this profound sadness - for both the physical and spiritual loss this family had suffered.

I was so incredibly moved by the experience that I vowed to return - with students from Archbishop Riordan HS (where I was the Campus Minister and Director of Service Learning, as well as an English teacher).

In 2007, a brave colleague (ARHS Director of Operations) and I took 16 students and 3 parents to New Orleans over spring break. Below is a news report (I'm the one in the white jacket, leading the prayer) and a few pictures from the trip:

The tradition of going to NO during spring break has continued at Riordan every year since - maybe it's time to bring this same tradition to Paramus Catholic HS.

Links:

Hurricane Irene vs. Hurricane Katrina: How They Stack Up
S.F. students join Katrina relief | Staff report | Local | San Francisco Examiner
Marianist Reflection: My Everyday Struggle with Justice (April 2007)
Casey: My Hero is a Bus Thief
Just Faith Ministries: Prayerful Reflections and Faithful Responses to the Gulf Coast Disaster
Catholic Charities - Volunteer in New Orleans

NJ Pictures of Hurricane Irene

2011-08-29T08:52:00.029-04:00

Flooded Road in Sea Isle City

After the 5.8 earthquake on Wed - Hurricane Irene hit Saturday night. Here are some pictures of Hurricane Irene's impact on parts of NJ. We were lucky; our power was only out for two days and we didn't have any property damage. Most of the roads, however, around our place were flooded - and we couldn't leave.

Outside Our Condo
(two of the many trees brought down in the hurricane)

Spotswood

(click HERE to see video of a Spotswood family getting rescued)

Parking lot of Immaculate Conception Church in Spotswood

Pictures of Milltown
(taken by one of Gary's students)

My cousin also took VIDEO FOOTAGE of the damage in Northern Jersey, by my uncle's place - his footage was used on News 12.

I love this picture of a boarded up place in Asbury Park - it reminds me of the picture I should have taken, but didn't... the house across from us in Sea Isle was boarded up and had "No Wake" spray painted across the planks - wish I had snapped that one.

This is the place next to ours in Sea Isle - we woke up Friday to the sound of a table saws (cutting boards) and at least 50 seagulls squawking out of their minds - flying in circles.

Surfing Irene

2011-08-26T21:39:00.027-04:00

While most of the island is trying to get away from the ocean in preparation for hurricane Irene's landfall - NJ surfers rush in... There were at least 15 surfers right in front of our Sea Isle place tonight. (We are evacuating tomorrow.) Sorry, Gov. Christie.

Sea Isle Seashell Still-Life

2011-08-26T19:40:00.025-04:00

These are some of the shells I collected during our morning walks on the beach - the clam shell in the middle is the "affirmation shell" that I got after completing my beach yoga class on Monday. Below is my first attempt at watercolors; not too bad a for a first try. Life (and vacation) after all is about trying new things.

Before the Evacuation

2011-08-26T11:35:00.028-04:00

August 24, 2011

For the past 5 summers, we have rented a house in Sea Isle City, NJ for a week in August with a couple of our friends. This year, our place was a million-dollar home right on the promenade; we moved in last Saturday and are supposed to check out tomorrow - but there is a hurricane coming, and the town is busy boarding up windows and throwing down sandbags... so we are thinking about leaving a day early.

Evacuation is only "suggested" for today - but mandatory tomorrow; Gary just went to get gas because a local said the gas stations are running out. I wonder how badly the Jersey coast is going to get hit by hurricane Irene. At least we had a beautiful week at the shore (see below).

Our Friends' Baby in Front of Our Rental

Our Balcony, Overlooking the Beach

Balcony Dwelling

Morning View from Our Balcony

Afternoon at the Beach

Evening View from Our Balcony

Octreotide Scan Recap

2011-08-23T07:57:00.060-04:00

August 16, 2011
On the way up to Boston (for my Octreotide scans), we stopped in Mystic, Conn. for my "meet and greet" with a beluga whale. Afterward, we ate at Sea Swirl, a seafood and ice cream stand which is housed in an old, converted Carvel Ice Cream storefront.

Mystic Sea Port (where Humphrey Bogart and Lauren Bacall spent their honeymoon)

I Love Sea Swirl's Logo: a Fish Eating an Ice Cream Cone

Sea Swirl's clam strips are simultaneously flaky and chewy - in a good way.

Sea Swirl has both soft serve and hard ice cream (including black raspberry); I was especially excited to see watermelon soft serve - but discovered it was vanilla ice cream with a "flavor blast" of watermelon... still delicious.

After we left Mystic, Connecticut, we went to my aunt's place in Wakefield, Massachusetts - where we stayed for a few days in preparation for my Dana-Farber appointments.

August 17, 2011
We arrived at Dana-Farber at 8:00am, and after we wandered around the wrong building and the wrong floor for a while, Gary and I finally found the nuclear medicine department. Perhaps the coolest thing about the entire experience was the crazy-looking metal container that my radioactive iv shot came in - the nurse explained "this container is to protect me, not you." Ok, that's comforting I guess.

After four hours, the scans started. I hated it. I thought I'd be fine after conquering the MRI, but I was wrong. While the Oscan machine is open on both sides, a massive, flat camera gets lowered down until it's right above your nose (for much of the time). Even with a blindfold, meditation music, and deep breathing - I spent nearly every moment fighting panic.

At first, I couldn't figure out why I was having such a problem with the tests (which are a couple of hours long) until I remembered that in my early 20s I went through a phase of having really vivid nightmares of being buried alive. Worse than the nightmares themselves, however, was the fact that somehow I'd manage to crawl UNDER the bed during my sleep... so I'd actually be touching the underneath of my mattress while dreaming that I was feeling the inside of a coffin. I would scream and scream until someone in the house would pull me out from underneath the bed and wake me up. I think having a large flat surface over my face triggered those memories. Hopefully, I won't need to get another Oscan for a long, long time.

My Radioactive "Non-Warning" Label

Octreoscan Machine (the flat screen lowers down once you slide into that doughnut looking hole)

Gene Display at Dana-Farber Cancer Institute

Post Oscan Activities
Since my first Oscan was an all-day event, Gary took in an afternoon Red Sox game at Fenway. I had some time to kill in between my testing and the end of the ballgame, so I went to the Gardner Museum, which is one of the most eclectic, fascinating, beautiful museums I've ever been to. (Travel note: Fenway Park and the Gardner Museum are both within walking distance of Dana-Farber, and totally worth a visit.)

August 18, 2011
After my second day of testing, Gary and I headed home - and hit Frank Pepe Pizzeria in New Haven, Conn. for a clam pie. Gary thought it was absolutely pizza hall-of-fame material; I thought it was solid, but not mind-blowing.

We finally got our clam pie (See previous blog post: Not So Clamtastic aka Shell Shocked)

Beluga Whale - In the Bucket

2011-08-20T21:44:00.030-04:00

About 7 years ago, my closest friend from college - Sasha- was diagnosed with a brain tumor, and had radical neurosurgery (during which she was awake) to remove it. Her story is incredible, and has been featured in commercials, print ads and on UCSF's website.

I remember Sasha going through the agonizing process of deciding whether or not to have the surgery. The tumor was under a major artery in her frontal lobe (part of the brain that controls movement, language, memory and personality). Even if they were successful in removing the cancer, there was a strong likelihood that they would fail to preserve "Sasha" as we all knew her. It was an incredibly courageous leap of faith to go ahead with the surgery; but even braver still was the fact that Sasha postponed the operation until she first took a trip to Europe - something she had always wanted to do. I am happy to say that the surgery was a complete success, and today she is alive, and beautiful, and healthy, and very much her same, incredibly spunky self.

Six years after Sasha's cancer diagnosis, mine came. My right hemi colectomy and lymph removal last year wasn't a dangerous nor life threatening surgery... certainly nothing like what Sasha went through - but I still wanted to follow in her footsteps and do something (on a small scale) that I'd always wanted to do before they gutted me like a trout. Only one problem - I couldn't think of anything.

I had no bucket list.

Since carcinoid's "mascot" is a zebra, I thought it'd be cool to do something with an "exotic" animal - so I decided to try and find a place that had beluga whales. I love these ridiculously cute, bulbous, smiling, iceberg-white creatures... if you have never seen one, this is a beluga:

Sign from Mystic Aquarium
Pointing the Way to the Beluga Exhibit

As I was researching aquariums, I came upon the Mystic Aquarium in Connecticut, which not only has beluga whales, but an entire "Beluga Experience" where participants actually get in the water with one of these amazing animals. I called immediately, but they were completely booked for the summer - so I went into surgery with my one and only bucket list item still left unchecked.

This year - I was determined to finally get to meet a beluga; so on the way to my Dana-Farber appointment (for my radioactive injection and Oscan), Gary and I went to the Mystic Aquarium to meet Juno, a 1,320 lb male beluga whale, who let us pat his tongue, wiggle his melon (head blubber), feel his teeth, pet his back, and give him simple commands. It was a once-in-a-lifetime "encounter" - complete with a parting kiss.

Below are a couple of pictures from the day... the first three were taken by the aquarium photographer and a photo-booth; the second two were taken and edited on my iPhone using Instagram. Guess I need to come up with a new dream to stick on my bucket list.

Second Call from the Governor's Office

2011-08-19T15:32:00.006-04:00

Today I received a second call from Liz Ortiz, from Governor Chris Christie's office, about a possible proclamation for Neuroendocrine Cancer Awareness Day on November 10, 2011. She asked me to draft some language for the proclamation... below is my email and my proclamation attempt. Keep your fingers crossed!

From: Marlena Johnston
Sent: Friday, August 19, 2011 3:31 PM
To: Liz Ortiz
Subject: Proclamation Draft Language: Neuroendocrine Cancer Awareness Day (11/10/11)

Hi Liz,

Thank you so much for contacting me about the possibility of Governor Christie becoming the 17th governor to support the international initiative for increased awareness of neuroendocrine cancers (such as carcinoid). Presently, there is a global movement to recognize November 10th, 2011 as the second annual Worldwide Neuroendocrine Cancer Awareness Day (WNCAD), which you can learn more about at netcancerday.org.

After our conversation today, I looked at the proclamation language of the WNCAD initiative, as well as the proclamations for "NET Cancer Awareness Day" signed by governors Patrick (MA) and Bebe (LA), and crafted the below language for Governor Christie's approval. (Please note that the facts cited in the proclamation are agreed upon by the global NET community, and can be found at: http://netcancerday.org/resources/global-press-kit/.)

As I had mentioned in my earlier correspondence, I am a carcinoid cancer survivor, and a teacher at Paramus Catholic High School. Last year, our students gathered 792 signatures on 11/10/10 in support of the first ever WNCAD, and the students' efforts were featured in The Carcinoid Cancer Foundation's blog: https://carcinoid.wordpress.com/tag/paramus-catholic-high-school/.

The students of PC have already begun making plans to support the second annual WNCAD this November 10th, and the Governor's support would really mean a lot to them (and me). Please let me know if I can be of any further assistance.

Thanks again!

Marlena Johnston, NJ Resident
(my cancer story: channelingjackieo.blogspot.com)

Proclamation

Whereas Neuroendocrine tumors (NETs) often develop into cancer, including carcinoid cancer, that if left untreated can result in serious illness and death; and

Whereas According to the Carcinoid Cancer Foundation, Inc., approximately 11,000 people are diagnosed with carcinoid / NET cancers each year in the United States, including citizens from New Jersey; and

Whereas Over 90% of all NET patients are incorrectly diagnosed or initially treated for the wrong disease; and

Whereas From the initial onset of symptoms, the average time to proper diagnosis of NETs and related cancers exceeds five years; and

Whereas Through timely diagnosis and proper treatment, NET cancer patients can have significantly improved outcomes and quality of life;

Now, Therefore, I, Chris Christie, Governor of New Jersey, do hereby proclaim November 10, 2011 to be:

Neuroendocrine Cancer Awareness Day

Across the State, and I encourage patients, caregivers, health-care professionals, as well as the wider community, to join together to raise awareness about carcinoid / NET cancers, and the need for timely diagnosis and access to optimal treatment and care.

Muddled Hope: Oscan Test

2011-08-16T22:09:00.028-04:00

Editing Note: The above picture has been changed from the original post because THIS is really what an Oscan machine looks like... before that big block looking thing lowers down until it almost touches your nose.

After a lot of invaluable input from family, friends and fellow noid survivors, Gary and I decided to go ahead and keep my appointment at Dana-Farber tomorrow for an Octreotide scan (aka Oscan). After we made our final decision, Gary turned to me and said, "I don't even know what to hope for anymore... I'm not sure if we want the test to come back positive or negative."

I know what you're thinking... how can you want the test to come back positive for cancer? Well, here is the problem - regardless of whether the Oscan test shows that I have carcinoid syndrome, or it's another phantom disease making me sick - there's still a silent mutiny going on inside of my body. If it's related to the carcinoid, at least the enemy has a name... and we have a couple of weapons in our arsenal to fight it. If it's not the cancer, we have no immediate course of action - just more specialists and tests, pain and frustration.

The other tricky thing is that you wouldn't know by just looking at me that I'm sick, so a "positive" result would make me feel... well a little less crazy. Every time I'm sitting across from a new doctor - he inevitably looks at me skeptically after I describe my symptoms - like he just can't believe that this athletically built, happy looking girl (with all her hair) can really have anything all "that" wrong with her. It's like I'm at my car mechanic's garage, trying to explain a weird sound my car is making, and my mechanic is looking at me like I'm nuts.

One of the blogs that I follow is The Cancer Culture Chronicles, which details the journey of a very brave (and talented) author in her battle against breast cancer. Recently, she wrote a post "Look at Me" about this very phenomenon:

" 'You just wouldn't know it to look at you,' clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond. The thing is, pain for the most part is invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion." The Cancer Culture Chronicles

So much of what is wrong with me (including a lot of pain) is also invisible. Every day activities - such as climbing my condo stairs, have become difficult mini-battles.

These few little steps used to be a non-issue; now, they are my nemesis. Other small "changes" I've gone through in the last 8 months - that are invisible to the outside world - include:

- sleeping in two towels to try to sop-up some of the perspiration from my severe night sweats
- scarfing down nausea pills when the cold sweats and spinning come on
- regularly taking my temperature to monitor a never ending series of low-grade fevers
- constantly checking my heart rate at the gym to make sure it doesn't suddenly drop to 50 bpm (usually it does this after I hit 140 bpm)
- having to stop and rest - a lot
- making these little whimpers of pain every once and awhile... that just squeak out.

While most of the world aren't privy to this new reality, my friends and family are - and they tell everyone (including me), "I just can't explain it - but she's sick and weak." Their confirmation is comforting, as if they are sitting next to me at the garage with my mechanic saying, "yup- I know that car really well too, and something isn't working right."

So my big question is which girl will the Oscan detect tomorrow: the one who at first blush seems absolutely fine, or the one whose body is slowly deteriorating a little more each month? Will the Oscan come up with some answers, or just tell us to "go fish" again? Whatever it shows, I guess it's good news: negative = no more cancer; positive = a couple of treatments that might make me feel better. I suppose we will just have to hope for "the best"; whatever that may be.

The Return Home aka the Best Sausage Pizza Anywhere

2011-08-12T10:26:00.018-04:00

We packed a lot into our little two-day road trip up to Dana-Farber; and I was completely bed-bound for a day and a half following our return, but it was worth it. In particular, our final stop on the way home was one of the best: Colony Grill in CT.

At home, Gary and I eat vegetarian and organic (as evidenced by our monthly Whole Foods bill)... but when we travel, we eat whatever is the local specialty. The best way to understand the culture of a new place - whether it be a new country or a new state, is to eat whatever the locals eat. Luckily for us, the locals in Stamford, CT eat sweet sausage pizza.

We left Kennebunkport, ME in the afternoon and reached CT around 8 pm... we once again turned to our book Road Food to see if there was a place to stop for dinner; its suggestion was Colony Grill - right off of route 95:

"Pizza is the only food on the menu, available in one size, about a foot-and-a-half in diameter with crust as thin as a saltine...Aside from the wild crunch of their crust, Colony pizzas are known for sweet sausage made across the street at another neighborhood survivor, DeYulio's Sausage Co,, and for the optional topping called 'hot oil': peppery olive oil that imbues them with zest and lusciousness unlike any other." - Roadfood

We ordered a mushroom, sausage, and hot oil pizza. When it came, it looked amazing - Gary took one bite and waived furiously at me to stop... don't eat. His eyes started watering as he mouthed "hot" - I asked "temperature or spice" and he choked out "spice."

Uh oh.

I took a bite and assured him it wasn't too spicy at all... which is weird since he can stand spice more than I can. It turns out that (unbeknownst to us) a "stinger" had made its way onto our pie, which is what Gary had bitten into. We later searched the internet, but couldn't find just what exactly a stinger was... other than ridiculously hot! (I tried a small "stinger" bite and it singed my taste buds). We did come to learn, however, that every hot-oil pie has one to two stingers placed in the middle to indicate that the hot-oil had already been applied to the pie. I guess accidental stinger consumption is part of the "rookie" Colony experience... we won't make that mistake again when we return. And yes, we will drive to CT to have another pie - it may have been one of the best pizzas I've ever had. (That's saying something coming from an Italian-Jersey girl!)

Kennebunkport, ME

2011-08-11T23:05:00.022-04:00

We stayed overnight at my Aunt's house in Wakefield, Mass on Monday night, in order to make my appointment with Dr. Kulke Tuesday morning at 8:15 am. We were done at Dana-Farber Cancer Institute around 11 am, and did the only thing we could following a disappointing doctor's appointment that basically left us with no answers and no plan of action - we drove to Maine for lobster rolls.

We were a bit apprehensive given that Road Food's "best clams" suggestion was a big flop; but the book assured us that The Clam Shack in Kennebunkport Maine was THE place for lobster rolls. It was a split decision - I loved them while Gary was so - so on them. They were no frills - just one lb of fresh lobster drenched in butter on freshly baked bread. The lobster meat was delicate and fresh - the lobster claws in particular were sweet and the perfect firmness.

After lunch, we did some strolling around - Kennebunkport is a fishing town on the coast, with a lot of amazing houses overlooking the ocean. We decided to get some blueberry pie at Mabel's Lobster Claw Restaurant. Gary was tempted to try another lobster roll - but opted for "Yankee style" clam chowder instead, which was outstanding: creamy and filled with fresh hunks of clams and roasted potatoes. My blueberry pie was equally good... I guess Maine wild blueberries are a regional specialty, and the locally grown ones are much smaller than the ones in the supermarket, with a tangy flavor punch.

Political Note:

George W. and Laura Bush have their vacation "compound" in Kennebunkport. They too love Mabel's blueberry desserts ... but trust me, the pie transcends politics.

Boston MD (Dana-Farber Cancer Institute)

2011-08-09T18:59:00.017-04:00

The trip to Dana-Farber Cancer Institute to see a carcinoid expert ended up being extraordinarily anti-climatic.

Dr. Kulke was nice enough, and smiled a lot. He had all my records and pathology slides. The appointment started with me patiently explaining my myriad of symptoms: heart problems, joint pain, exhaustion, flushing, rashes, fevers, night sweats, nausea, abdomen distention and pressure, leg swelling, and muscle weakness.

After I was done, Gary asked him: "Does any of that sound familiar?"
He just smiled and said, "Not really."
Followed by awkward silence.

Dr. Kulke then summarized his opinion: there is a very low probability the cancer has developed into the syndrome (good news), but he couldn't rule it out since some of my symptoms are consistent with the syndrome (ambivalent news). He advised an octreotide scan (two-day nuclear medicine test) along with a blood test for a NET tumor marker to investigate further. His only other suggestion was to get a good general practitioner. We scheduled the octreotide scan for next week, and a follow up appointment with him in September.

(I also asked him whether he knew anything about the black raspberry powder - he said he had heard some of his patients talk about it but wouldn't put much stock in it.)

Bottom line is: we didn't learn anything new. Everyone agrees that something is making me really sick, but both Dr. Nash and Dr. Kulke concur that there is only a slim probability that carcinoid syndrome is the cause. If the next tests come back negative for additional NET tumors, I'll have to see a slew of new specialists. It feels like deja vu all over again (6 years of misdiagnosis before carcinoid was found).

Don't get me wrong; I am very grateful that my cancer is most likely gone (or at least under control), but I am disheartened that there is no real plan of action to get me better. All I know is that I'm 37 - I am not diabetic nor overweight, I don't drink, smoke or do drugs, I exercise and eat organically - I should not feel like I'm stuck in the body of a 70 year old woman.

Gary and I decided that since the only thing Dr. Kulke offered was a test Dr. Nash didn't want to do - we would call Dr. Nash's office to see if he would change his mind and order the test to save us a trip back to Boston. Rachel (best nurse in the entire world) called today from Dr. Nash's office, and said he wanted me to meet with a different doctor at Sloan Kettering, Diane Reidy, who was well versed in carcinoid to discuss the merits of the new tests and my current condition. I have an appointment with her on September 9th.

Big question: do I cancel the octreotide scan in Boston? Since Dr. Nash doesn't believe in octreotide scans, I assume the new Sloan doctor doesn't either. I'm not exactly thrilled about being injected with radioactive material - but what if it lights up something that explains what's wrong with me? I guess it comes down to trust - and I trust Dr. Nash and Sloan Kettering; and I was really impressed with Dr. Reidy's CV - so most likely I'll say "thanks, but no thanks" to the pleasant Dr. Kulke and "let's get down to business" to Dr. Reidy.

One thing that Dr. Nash's nurse Rachel did say, however, is that I can't put off my cardiology appointment any longer - she's right. It's pretty scary when your heart stops and is so violent in restarting that you cough and shake like a madman; finding a good cardiologist just got top billing on my summer to-do list.

Update August 12th: After talking it over with Gary and my family, as well as other Carcinoid survivors, I decided to keep both appointments: the one in Boston for the octreotide scan and the one at Sloan-Kettering with Dr. Reidy. Until we find answers, we decided that we should see all the "experts" possible and do any non-invasive testing that might help shed some light on this thing.

Not So Clamtastic aka Shell Shocked

2011-08-08T20:15:00.002-04:00

Monday, August 8TH (on the way to MA)

For lunch, we went to Frank Pepe Pizzeria Napoletana in CT - to sample some of their famous "clam pie," which is basically a white pizza with fresh clams on top. So imagine our disappointment when we arrived only to be met with this sign:

What bad luck!

We ended up ordering their "summer pizza" which was amazing: it's served on a rectangular baking sheet, and the crust is thin yet doughy, with the perfect amount of cheese, topped with basil and slightly caramelized marinated fresh tomatoes.

While the pizza was out of this world, we just had to ask our waitress: "why no clam pies today?" As soon as we uttered the question, the couple in the next booth piped up: "They never have clams on Mondays."

The waitress expanded on this by explaining that apparently "Eric" is the only one who shucks the clams, and he works 6 days a week... Monday is his only day free from his high-pressured, fast-paced mollusk responsibilities. In fact, (she announced somewhat tauntingly) there was presently a huge pile of clams in the back - patiently waiting for Eric's magic touch. Drats.

So, with clams in mind, we continued our journey north to The Clam Box in MA, which according to Road Food has some of the best fried clams in the country.

Road Food was wrong; dead wrong.

We ordered their two types of clams: strips and native... both were fried, and both were big letdowns.

The clam strips were tasteless, and the batter severely under seasoned. The native clams had little balls of briny flesh attached, which tasted watery and bitter instead of sweet. Even the fries were non-noteworthy.

I used to think anything fried was delicious... I guess I have The Clam Box to thank for setting me straight on that one. Looks like we will just have to get some good old fashioned New Jersey steamers this weekend, to finally satiate our clam craving.

-Posted using BlogPress from my iPhone

On The Road Again

2011-08-08T18:35:00.002-04:00

Today, Gary and I packed up the car for an overnight trip to Boston in preparation for my appointment tomorrow with Dr. Kulke, a carcinoid expert, at the Dana-Farber Cancer Center.

Three years ago, Gary and I drove my car (and stuff) cross country from CA to NJ, and made a pact to only eat at local places -- NO FAST FOOD period. It was a fun challenge; one we met with the help of this book:

So last night we dusted off this old friend of ours, and picked out three places (and seafood specialties) to work into our trip:

Pepe's Pizzeria Napoletana (New Haven, CT) - clam pizza
The Clam Shack (Kennebunkport, ME) - fried clams
Clam Box (Ipswich, MA) - lobster rolls

Should be an interesting 48 hours.

- Posted using BlogPress from my iPhone

Visiting Sistah

2011-08-08T14:49:00.003-04:00

I got to spend a couple days with my sister Meredith (aka sistah) in Claremont, CA before I had to fly East and she had to start her second year of medical school; once again we jam packed our days ... Here is a recap of our top 5 mini adventures:

1. 90 min Bikram (hot) yoga class

2. Double feature at a drive-in movie theater (Captain America and Harry Potter)

3. Lots of play time with Lil - her 4 lb chihuahua

4. Awesome trip to the antique mart

5. And of course In and Out Burgers! (Can you tell which one is sans meat?... Hint: not mine.)

I really miss her (and CA).
---

Note on the etymology of "sistah":

My grandmother never uses proper nouns unless absolutely necessary ... so when inquiring about Meredith she always asks, "how's sistah?" in her thick Brooklyn accent. (Also, she refers to me as "the kid" - even if I'm standing right in front of her.) Meredith and I find my grandmother's colloquial quirks endearing, and have adopted them accordingly.

- Posted using BlogPress from my iPhone

Visiting Home - Fallbrook, CA

2011-08-08T01:46:00.015-04:00

Paradise: My Mom's Back Yard

After our Santa Fe trip, Diana and I spent a couple of days at my mom's house in Fallbrook, CA, and laid by the pool, ate great food, and met her new horse Andy.

This is Andy (and what he thinks of me)

... and this is me trying to bribe him with carrots.

After the stables - mom and I traded in the carrots for a Hawaiian lunch

...and then, Diana and I took in a car show.

Diana and I even got to see a movie during our visit: Cowboys & Aliens, which I give 5 out of 5 stars. I can't believe the critics who slammed the film... the movie is about cowboys versus aliens - what did they expect?? Like Snakes on a Plane (another classic), the movie doesn't purport to be anything more than what it is - fun, campy brilliance. (Then again, I am somewhat of an eccentric aficionado of fantastically bad B films - as evidenced by the fact that I consider Shark Attack 3: Megalodon one of the greatest movies ever made.)

On Sunday, my sister met up with Diana and I for an afternoon Padres game. Now, I'm a Yankees fan and Diana is a Giants fan - but baseball is baseball, and neither of us had been to Petco Park. On the way down to San Diego, we gave Meredith a crash course in the basic rules and strategy of baseball. It turned out to be a great game between two not-so-great teams (Padres vs. Rockies), which resulted in a win for the home team. Bonus - we had insanely good seats (15 rows from the field), which only cost $38 a piece on StubHub.

After the ballgame, we dropped Diana off at the San Diego airport for her return flight to San Francisco, and Meredith and I drove up to Claremont for some sistah time.

Santa Fe: Arts and Culture

2011-08-07T22:29:00.041-04:00

Santa Fe Opera House
Image from ArtsJournal Weblog

The Santa Fe Opera House is one of the most beautiful venues I've ever been to, and I remain on their mailing list - forever hopeful for a chance to return. So when I got a 50% discounted offer from the Santa Fe Opera for their new opera: "The Last Savage" back in February - the wheels for our Santa Fe trip were set in motion. What makes the opera experience so breathtaking is not only the world-renowned vocalists, but the scenery... the opera is outdoors - with the mountains and sunset as its backdrop. This was my third opera in Santa Fe, but definitely not my last.

Di and I at the Opera

In addition to attending the opera, Diana and I managed to pack a good amount of art and culture into our 4 day trip. We learned about Santa Fe's history at the Palace of the Governors (which is the oldest continuously occupied public building in the US), and wandered among famous American iconic paintings (such as Warhol's Jackie-O silkscreens, O'Keeffe's landscapes, and Rockwell's "Soda Jerk") at the Georgia O'Keeffe Museum.

Iconic New Mexican Painter:
Georgia O'Keeffe (google images)

In addition to formal museums, Diana and I also visited the art galleries on Canyon Road.

Artist Coffee Break?

Canyon Road is Santa Fe's art district - and features over 100 galleries and studios in converted adobe homes. It is one of the premier destinations in the world for art collectors - just behind New York and Paris. In one of the galleries Diana and I came upon, three elderly gentlemen, in "casual wear" were considering purchasing a 22k silver plate. We somehow felt like intruders in a very personal moment in these men's friendship. I would have loved to know the back story behind these three, smiling amigos, and how they came upon this particular art dealer on Canyon Road.

Churches of Santa Fe

2011-08-06T15:21:00.050-04:00

Diana and I are both Italian Catholics, so of course we wanted to visit the several historic churches in Santa Fe.

The Cathedral Basilica of St Francis of Assisi

The first Cathedral was built in 1610 by the Franciscan Friars and Spanish colonists, but was destroyed in the Pueblo revolt in 1680. The current Cathedral was rebuilt in 1886.

Interestingly, the French archbishops had all of the traditional New Mexican Mission Style art removed from the Cathedral, but in 1997 the present Archbishop commissioned Santa Fe local folk artist Marie Romero Cash to redo the artwork lining the walls in the Santero style reminiscent of the historic churches.

The Loretto Chapel

Diana and I stayed at the beautiful Inn and Spa of Loretto, in the heart of Santa Fe. It's a first class hotel, and I had one of the best therapeutic massages of my life at their spa (which was rated #25 out of the top 50 spas in the country by Conde Nest). Another really neat thing about the Loretto Inn is that our room overlooked the chapel.

The Loretto Chapel is home to the "miracle staircase" which Diana and I payed $2 to see. At first, I couldn't understand what was so miraculous about it since the stairs looked like, well... stairs.

So we did a little research. Basically, the story goes that nuns built this chapel, but miscalculated the proportions and had no way to get from the ground floor to the 20 foot choir loft. The nuns prayed to St. Joseph (saint of carpenters), and a carpenter showed up in the middle of the night on a donkey, and built the staircase using only a square, tub of water, and a saw. The stairway makes two complete 360 degree turns, has no central support, and no nails. In short, mathematically it shouldn't stay up. Additionally, the wood is not indigenous to the area - no one has any idea where it came from.

After he finished, the carpenter left in the middle of the night, without asking for payment; miracle or not - that was one great guy.

The San Miguel Mission

The San Miguel Mission is the oldest active church in the United States, and it was our third and final stop on our "church tour." While it was the most architectually simple, there was something amazing about it - which made me linger a little longer than normal after we lit candles for our loved ones at the altar.

After all of this religious and historical reverence, we made our way through The Mission's gift shop, and broke out into huge grins when we came across this little gem:

Diana and I are English teachers after all, and we catch spelling errors for a living - so there is something wonderfully entertaining about finding these rare linguistic renegades out in public, especially when you least expect it.

Santa Fe Recipes

2011-07-27T15:00:00.070-04:00

Santa Fe is known for its architecture and food, which are both heavily influenced by its Anglo, Spanish and Native American tri-cultural heritage.

The New Mexican desert is dotted with pinkish-beige adobes, which are made by pouring a mixture of mud in between wooden frames. "Recipes" for adobe "mud" differ between Pueblo tribes, and are passed down from mother to daughter. Nearly all of the buildings in Santa Fe are adobes, and recently there has been a push to interview women elders of Pueblo tribes in order to record and preserve this uniquely "green" building method.

In addition to architectural recipes, New Mexico's distinctive culture is reflected in its cuisine, which may be some of the best food this country has to offer. Below are a few of our most memorable epicurean moments...

Breakfast: Luminaria

The locally grown green chile is an absolute staple of New Mexican cuisine (even for breakfast) and has more of a flavor-packed punch than a tabasco-like heat. I love NM green chile, and was anxious for Diana to try some as soon as possible. So, for our first breakfast in Santa Fe, we ate at our hotel's restaurant, Luminaria, which turned out to be wonderful. Diana and I both had eggs scrambled with green chile, tomatoes and avocado, with a side of hash browns, homemade warm tortillas, and fresh pear / ginger juice. It was the perfect start to a delicious trip.

Lunch: Tomasita's

In addition to the green chile, I could not leave Santa Fe without introducing Diana to my beloved sopaipillas, which are puffy, deep fried squares of dough, made in the same tradition as Navajo fry bread. Locals and tourists alike agree - the place for these tasty-pillow-treats is Tomasita's. While people have strong opinions on how to best enjoy their sopaipillas (savory or sweet), I subscribe to the local three-step process:

Step One: break off a large piece of the sopaipilla and smother it in honey-butter.

Step Two: squirt a little local honey over the honey-butter (and no, it's not too much honey).

Step Three: dredge your sticky, golden, buttery bread through a mixture of spicy chile - preferably "Christmas style" (1/2 green and 1/2 red chile).

Diana and I perfected this ritual with a main course of Huevos Rancheros, (corn tortillas layered in chile, beans and cheese with two fried eggs on top) - another Tomasita's classic.

Afternoon Snack: Mangiamo Pronto!

Santa Fe is at 7,000 feet, and the altitude does get to you. One afternoon I took a short nap as Diana tooled around. When I woke up, I got a text from her: "I'm at the gelato place across the street" - leave it to Diana to hunt down an Italian pit-stop in NM. This little cafe turned out to be a winner- with good coffee, creamy salted caramel gelato, and high quality prosciutto wrapped melon.

Dinner: The Shed and The Pink Adobe

We had two outstanding dinners: chicken enchiladas at The Shed and pork tomalles at The Pink Adobe. At both places, we were giddy with the explosion of flavors - and thanked the food gods for leading us to the promise land.

If you look closely at the picture above, you will see some posole on the left hand side of my dinner plate. Posole is a little like a dry popcorn soup, and is made with lime, hominy, pork, chiles, garlic & spices. There is an expression in NM: "rice is nice but posole is holy" - and an argument can be made that you aren't really eating a traditional New Mexican meal unless posole is a part of it. It's sort of bland on its own, but takes on the heat and flavor of whatever it compliments, which makes it a perfect side to any chile-smothered dish.

They say "if you can't stand the heat, stay out of New Mexico: Here chile is king"; I say - long live his majesty's reign.

Some Santa Fe Food Links:

Hatch Chile Festival: Sept 3-4
Santa Fe School of Cooking
Gil's Thrilling (and Filling) Blog

Getting to Santa Fe

2011-07-26T15:49:00.005-04:00

When I moved from San Francisco to NJ three years ago, I left behind one of the closest friends I've ever had - Diana. Since we are both teachers, we decided to plan a little summer get away this year for some girl time. We chose to explore Santa Fe, New Mexico because it was somewhat "in the middle" of the two of us, and Diana had never been.

While I have been to Santa Fe at least 6 or 7 times before, I've never navigated it without a car - so I had no idea how to get us from the Albuquerque airport to downtown Santa Fe.

Diana and I decided to jump right into the local flavor of things, and take the train instead of an airport shuttle. Even though we had to wait 2 hrs at the airport (since the train runs so infrequently), we didn't have any problems chatting away the time. On our short (free) bus ride from the airport to the train, our driver gave us a great tip: we should go straight up-stairs and sit on the right side of the train for the best scenery.

While we miscalculated where the "right" side was, the train turned out to be a fantastic, relaxing way to see some beautiful southwest landscapes. Plus - it's dirt cheap: $3 for students and $7 for adults.

Next stop: Santa Fe adventure!

- Posted using BlogPress from my iPhone

Allusions in Paris

2011-07-23T23:57:00.046-04:00

Allusion: a reference in a literary work or film to a famous person, place, or thing in history, or another artistic work.

Yesterday, I lunched on popcorn and snow caps as Gary and I took in Woodie Allen's new movie, "Midnight in Paris" - which was simply fantastic.

I didn't really know anything about the film before going, except that it was about Gil (Owen Wilson), a successful Hollywood movie script writer who goes to Paris to try to write something "serious", and in the process finds a portal in time back to 1920s Paris.

There were only 7 of us in the theater, so when the protagonist Gil first enters this "alternate 1920s Parisian universe" and meets "Zelda" - my gasp was clearly audible. My mind began racing - "no way, can't be" and then... Scott (as in Fitzgerald) introduced himself to a wide-eyed Gil.

Neither Gil nor I could believe our luck - not only was this a trip back to 1920s Paris - but a ticket into one of the most incredible literary and artistic group of friends history has ever known: Gertrude Stein, Hemingway, Fitzgerald, TS Eliot - somehow Gil had found my beloved "lost generation" literary heroes.

As the movie progressed, the allusions kept coming (Picasso, Matisse, Baker, Porter etc) to my delight, and I just melted into the romance of the era, good acting, breathtaking cinematography, and Allen's witty dialogue. I felt like Ceceila in "The Purple Rose of Cairo" - like somehow I had jumped into the film and was tagging along with Gil - throwing a knowing, nudging elbow here and there at inside jokes concerning these literary and artistic legends' lives.

After the film, I tried to find a list of allusions in the movie and came across several scathing reviews criticizing Allen's 1920s cameos. I was surprised by the negative reviews - claiming that the allusions were only added so pseudo intellectuals could loudly acknowledge obscure historical references with a grunt or vigorous head nod. Ridiculous. That's like claiming the creators of The Simpsons and Family Guy only put literary and artistic allusions into their shows so parents can look down their noses at their small children and dogs, and "humph" in triumph at their own intellectual superiority.

I am a high school English teacher - allusions and other literary devices are the bread and butter of my trade.

I tell my students that they need a baseline knowledge of historically and artistically important works, people and events because these "allusions" weave a fabric of common experience that present-day authors and creators draw upon to provide a richer experience for the reader or audience. In a way - allusions are a short cut to deeper understanding... If I say, "I really, really, really, really, really, love my boyfriend" - that only conveys a vague explanation of my emotions... but if I say, "I love my boyfriend as much as Juliet loved Romeo" suddenly, the depth of my relationship is more clearly conveyed.

Allusions are important, and intellectually satisfying - as demonstrated beautifully by Allen's film. Through Gil's charming relationships with literary and artistic giants of the past, he reveals a simple but important truth: sometimes the enchantment of nostalgia can prevent us from seeing the beauty of the present.

You better believe that I'm showing a clip from this film after I teach "The Great Gatsby" - and I can guarantee the smiles and "ohhhs" of understanding from my students will not be mere feigned intellectual prowess, but honest reflections of the wonderment they will feel when they realize that they are finally in on the inside jokes.

Summer Treats

2011-07-23T19:12:00.014-04:00

Last night I got two treats - Gary and I got to hang out with two of our favorite people in the world: Chris and Christine AND we got ice cream filled crepes from Cake, Bake and Roll on Long Branch's "boardwalk" - Pier Village.

Christine and I both got the coffee-chocolate-chunk ice cream with our crepes, and although the flavors were absolutely delicious, the ice cream melted too quickly because it was actually stuffed inside of the crepe rather than resting on top of it. Next time, I'll just have to be more "hands-on" in the assembly process.

It's a cute place; I especially liked the little bistro touches like the European lazy-susan ice cream wheel. According to the weather index, yesterday "felt like" 115 degrees, so the fact that the cool Ocean breeze made it bearable enough to eat outside made the crepes (and evening) that much sweeter.

Colonoscopy Results

2011-07-22T16:35:00.024-04:00

Even though this was my 5th bowel prep in 15 months, all did not go exactly as planned.

I had major vomiting and fever issues, and lost 5.6 lbs between 4 pm Mon afternoon and 5:30 am Tues morning. In fact, I actually started blacking out right before my iv went in, which - thankfully - has never happened before.

The great news is that they got me stabilized, and my colonoscopy came back free from any further growths! We are really happy with the end results (no pun intended), and I'm relieved that I don't need another one until next year.

On a side note - Gary and I love my RWJ colorectal oncological surgeon who does my yearly tests (Dr. Maloney-Patel). She just recently had a baby girl, so we got her a little newborn outfit as a small token of our gratitude for her amazing ongoing care and support. (I must have looked a bit odd in the ambulatory surgery waiting room - wearing a cancer survivor shirt and two hospital id bracelettes, with a baby present on my lap...)

It turns out that I was Dr. Maloney-Patel's first patient back from maternity leave, and that her baby girl - Nina - shares my birthday (May 14th). Somehow the "cuteness" of this news overshadowed the miserableness of the prep, and I couldn't help but flash a big, toothy smile at the anesthesiologist, right before he put me under.

- Posted using BlogPress from my iPhone

Virtual Stamp Collection: Featuring Zebras

2011-07-18T17:24:00.037-04:00

Prologue: I wrote this on Monday - while doing my bowel prep... and going on an internet stamp hunt turned out to be a great diversion.

For the past 2.5 hours, I've been drinking 8 ounces of my blue-colored, mucus-flavored bowel-prep concoction every 10 minutes, as directed.

In between gagging down this terrible elixir, I decided to write a letter to my sister to take my mind off of things; not an email or facebook message - a real, honest to goodness, pen-to-paper, letter.

After I was finished, I thought about how perfect it would be if I had a zebra stamp to stick on it. (Carcinoid ribbon color is zebra striped). There is something so romantic about stamps - especially ones that have a faded, foreign postmark, smothering them, as they cling to the right hand corner of a yellowed, hand addressed envelope.

Then I thought - well, hey... there have to be countries that feature zebras on their postage... and how cool would it be to start a stamp collection? While I probably write more letters than most, I too am guilty of indulging in the immediacy of virtual messaging on a daily basis - so I found it sweetly ironic (and immediately gratifying) to create a virtual collection of zebra postage stamps from around the world.

From time to time, I'm going to add to my virtual collection, and maybe someday I'll affix my own foreign stamp to a postcard telling of some adventure I'm having - a miniature zebra winking from behind a smudged ink-ring - symbolic evidence of my triumphant return from the land of cancer.

Congo (1993)

Rwanda (1984)

Rwanda (1967)

Cuba (1970)

Guinea (1975)

USSR (1968)

This is a collage of stamps that I created through a program called Smilebox, which includes stamps from the following countries:

left column: Kenya (1966); United Nations (1984), Rwanda (1984); center column: Angola (1953), Portugese colony of Mozambique Companhia (1937), Belgian Congo (1942); right column: Vietnam (1982), Dependency of Ajman, Manama (1969), Zimbabwe (1980), Republic of Guinea Bissau (1988), Arab Democratic Republic of Western Sahara (1996), Nigeria (2001)

If you happen upon any zebra stamps out there in your travels - please send me a picture :)

Stamp Entry 7/23: Submitted by My Friend Jean in NJ

Famous Still Lifes

2011-07-18T11:49:00.015-04:00

Paul Cezanne
Still Life with Apples
Oil on canvas, 18 1/8 x 21 5/8 (1890)

Marlena Johnston

Still Life with Miralax and Ben & Jerry's
Photo on iphone, 2.1 MB (2011)

The night before a bowel prep, I give myself a free pass to eat whatever I want - so last night, I had sushi and a 1/2 pint of Ben and Jerry's Chubby Hubby ice cream... today, I am on a clear liquid diet, and around 4 pm will start consuming 255 grams of Miralax, 4 Dulcolax pills, and 64 ounces of Gatorade in preparation for my colonoscopy tomorrow.

Yankees Milestones: Jeter and Grandpa

2011-07-17T16:13:00.001-04:00

Last week, Gary and I witnessed a Yankees' milestone when Derek Jeter earned his 3,000th career hit. The hit itself could have been straight out of a Hollywood movie script: full count, Yankees trailing by one at home, Jeter at bat -- all eyes and cameras on him when... he hits a BOMB that blasts out of left field - soaring Jeter into history. What made it even sweeter was that hit 3,000 was the first home run Jeter had at Yankee Stadium in about a year, he went 5 for 5, and had the game winning RBI in the 8th inning. Jeter is only the 28th major leaguer in the history of the game to get 3,000 hits - and the only Yankee. Even if you don't like the Yankees, you have to admit that Jeter joined the exclusive 3,000-hit club in style.

Earlier this season, there was another milestone at Yankee Stadium - I got to take my grandfather to a Yankees game for his 88th birthday. It was even more special because I was able to also share the day with Gary and my two cousins - all three of whom are HUGE Yankees fans.

Grandpa at his First Yankees Game at the New Stadium

My grandfather grew up as an Italian immigrant in Brooklyn - rooting for the Yankees for as long as he can remember. He only got to see one home game at the old stadium as a young man, and has pretty much watched every Yankees game on TV since. During my grandfather's second Yankees home game - he was in awe of not only the new stadium, but also of the entire "food culture" that has since developed around the game. As people got up and down for sushi, cheese steaks, garlic fries, beef nachos etc... he stared in wonderment:

"Are these people here to watch the game or eat?" he asked.
"Both" I said, while sipping a gourmet latte.

My grandfather went the traditional route and had a hot dog, which he said was the best hot dog he ever tasted. We too had the perfect game - with late scores from all of his Yankee favorites, and a win for the home team. It was a great day at the ballpark.

A hot dog at the ballgame beats roast beef at the Ritz. - Humphrey Bogart

I love baseball, and I follow two teams: the NY Yankees and the SF Giants. This will never change. Both of these teams represent the majority of my life, split between NJ & San Francisco; they are my "home teams", and I have spent hundreds of hours with friends and family on opposite coasts cheering for them both.

My sister once asked me why I love baseball so much. I guess because it's a simple game and a complex one:

- every at-bat starts as a one-on-one match up - until the batter wins, and then it turns into a 9-player team game;
- any team can come back at any time;
- fans can wear a part of the professional uniform (baseball hats) every day of the year;
- if a team is ahead, they still have to play their hearts out, and can't just "keep possession" of the ball to win;
- it's played on grass fields, under the starry nights of summer;
- the nit-picking-stats are mind-boggling - like an ultimate never ending Trivial Pursuit game;
- the clock does not determine who wins, skill does;
- and there is always a chance of catching a ball at a game, just like a real major-league star.

Bruce Catton said that big league ball was "the greatest conversation piece ever invented in America". Maybe that's the best reason for loving baseball; when I see young kids at games talking with their dads about a hit-and-run play, it reminds me of sitting on the couch as a little girl with my grandpa - feeling like a grown up because he and I would yell the same things at the TV when the guys in pinstripes did something wrong - or something extraordinary... both of which usually happened in every game.

NJ Does It Better...

2011-07-09T15:52:00.007-04:00

We made sure that my sister Meredith got two Jersey specialties before she headed back to California: pizza and Bent Spoon ice cream... I miss her already!

The Best-Laid Plans ...

2011-07-07T11:21:00.008-04:00

mom, grandma, grandpa, and uncle Frank

My mother and sister flew out from California for my grandmother's open heart surgery last week... The trip did not go exactly as planned:

Horses and Planes

My mom is a polio survivor and has significant weakness in both legs requiring leg braces; she is also a paraequestrian rider, and fell off her horse the day before she was scheduled to fly to NY. It turns out she pulled a groin muscle and fractured her pelvis in the fall. She, of course, was told not to fly; which she ignored.

The next morning the car service my mom had hired to take her and my sister to the San Diego airport (1 hour away) broke down, so my sister threw everything in her own car and drove as fast as she could. She pulled up to the curb, unloaded the bags and pulled out my mom's spare wheelchair - only to find that in the confusion they had forgotten the footrests - and my mother couldn't use the chair without them. After my sister got another wheelchair (with footrests) from the airline, she sped off to long-term parking... which was under construction - so she had to go to the overflow lot, which was even further.

When the parking shuttle picked her up, my sister told the driver that her flight was leaving in 30 min and she had left her wheelchair-bound mother on the curb... he quickly replied "don't worry, I know a short cut" and went flying down a dirt road. He dropped her off, pointed in a general direction and said "just run through that field... the airport is on the other side."

Dutifully, she got out and ran across the field and into the airport "on the other side" just in time to see my mother in an elevator - like a movie - with the doors closing... later they found each other - and somehow managed to successfully negotiate two planes across the country.

Med Student Diagnosis

I rented a wheelchair and picked them up at the Westchester airport, swung by my grandmother's house to pick her up, and the four of us headed over to my grandfather's nursing home / rehab facility, and met up with my uncle. (We told my grandparents that my mother was in a wheelchair because her leg braces broke - we didn't want to scare or upset them.)

While visiting my grandfather, my sister - who just finished her first year of medical school - was able to recognize the signs of C-Diff (a serious intestinal infection), which was being ignored. After her initial assessment was confirmed - we still had to make a big fuss to get him the medicine he needed. Thank goodness for med school!

Hairdryers and Fire Alarms

So then it was back to grandma's house for some sleep before her big surgery day.

We all turned in at a decent hour, only to be woken up at 3am by an alarm. At first we thought it was a fire alarm in the hallway - which my sister unscrewed... it wasn't that. Then we found another fire alarm a few inches away, which we couldn't seem to disconnect. As we were trying with all our might to get the second alarm down from the ceiling (and figure out why my grandparents' house has two fire alarms within 5 inches of each other), my grandmother - without explanation or hesitation - plugged in a hairdryer and started blow-drying the hallway. We finally got fire alarm #2 disconnected - but the beep - beep - beep - beep didn't stop; neither did my grandmother, despite our pleas.

Serendipitously, we looked at where my grandmother plugged in the hairdryer and saw a carbon dioxide alarm - which was going off... not in a way that was alerting us to deadly danger - just to a dead battery.

Once we got the alarm switched off, my grandmother slowly lowered her hairdryer, like a gunslinger from the Old West who had just killed the bad guy in the black cowboy hat... at which point my sister and I began hysterically laughing at the absurdity of the last 48-hours.

Update

I'm happy to report that things have settled down: mom is healing, grandma has two new heart valves, and grandpa is about to be released from rehab. There were many more ridiculous moments over the past week, but luckily our family is blessed with both strong genes and a healthy sense of humor.

Idiom Side Note

The common expression "the best laid-plans of mice and men often go astray" comes from Steinbeck's novel Of Mice and Men, which took its title from Robert Burns's poem "To a Mouse. On turning her up in her nest with the plough".

Happy 4th of July

2011-07-04T20:12:00.004-04:00

My sister took this pic going over the George Washington Bridge today ...

My mom, sister and I spent the morning visiting my grandmother in the cardiac ICU at NY Presbyterian Hospital, and the afternoon visiting my grandfather at his nursing home / rehab facility in NJ.

I am happy to report that they were both in great spirits and up to their old antics; in fact, they were joking around so much that my props were superfluous... But hey, when else can you wear flags on your head?

- Posted using BlogPress from my iPhone

This is Grandma

2011-07-02T13:29:00.015-04:00

Guest Blog Post: Meredith aka Sistah

The day before her open heart surgery, grandma was doing her usual routine - trying to feed us with a flurry of randomness from her refrigerator. It truly is something to behold for those who have not personally witnessed this phenomenon. Her surgery went great and she is recovering at New York Presbyterian right now, so in no time I'm sure she will be back at her old shenanigans.

Lunch Table Inventory:

mac & cheese, Raisin Bran, Rice Krispy cereal, almond cookies, oatmeal cookies, pecans, chopped chicken, cherries, plumbs, sliced strawberries, bananas, fruitcake, blueberries, left-over wanton soup, Chinese vegetables, cantaloupe, apple pie, peaches, and homemade peppers stuffed with rice, tomatoes and cheese.

Chasing Zebras: The Unofficial Guide to House, M.D.

2011-06-22T21:49:00.010-04:00

"I look for zebras because other doctors have ruled out all the horses." Gregory House, M.D.

Last May, I wrote a blog post chronicling appearances of "carcinoid" on the popular show House, M.D. (one of my mom's favorite shows). Recently, I came across this "insider's guide" to House - with a title too good not to include in my blog.

BOOK EXCERPT:

“It is an axiom of medicine: 'when you hear hoofbeats, you think horses, not zebras.' Dr. Gregory House and his elite team of diagnostic fellows chase medicine’s “zebras” — the anomalies, the odd presentations, the diseases so rare that most doctors would not have encountered them in a normal medical practice.

House, M.D. is, itself, a zebra in a herd of horses. It is a rare find of a show blessed with consistently sharp, intelligent writing: densely packed and multifaceted. It features one of the most complex characters ever to have been written for the small screen, Dr. Gregory House, brought to life through Hugh Laurie’s brilliant and nuanced performance."

Title: Chasing Zebras: The Unofficial Guide to House, M.D.
Author: Barbara Barnett
Genre: Television Nonfiction
Paperback: 352 pages
Publisher: Ecw Press (September 1, 2010)
Available on Amazon

Zebra Cover: Smithsonian Magazine

2011-06-22T17:52:00.032-04:00

A friend of mine texted me the Smithsonian Magazine cover for March 2011. Pretty neat!

After reading the magazine's featured article about the 20,000 plains zebras that wander through Botswana’s Makgadikgadi Pans - I'm even more convinced that the zebra is the PERFECT mascot for carcinoid survivors, because we share many of the same qualities ...

* Spirited: zebras have a wild spirit that makes them nearly impossible to tame or domesticate;

* Unique: like a human fingerprint, each zebra stripe pattern is identifiably different;

* Resilient: zebras "walk 34-mile round trips every two to four days to get from water to food, to water again, on an endless journey between thirst and hunger"; it's estimated that they travel more than 2,300 miles a year.

To Read the full article in the Smithsonian Magazine: "Nothing Can Stop the Zebra" click HERE.

iphone picture 6/1/11

A few weeks ago, I chaperoned the senior class trip to Six Flags Great Adventure and escaped the 94 degree heat for a while by partaking in the largest drive-thru safari outside of Africa. The 350-acre wildlife preserve has more than 1,200 exotic animals - including zebras of course!

But the Smithsonian article has me thinking - maybe I should take a trip to Africa to see these magnificent creatures, that hold so much meaning for me now, in the wild.

Weekend Warriors (Extreme Edition)

2011-06-19T14:57:00.025-04:00

Over the the past three months, Gary and I have participated in some pretty "extreme" weekend warrior events; below are some brief highlights:

Event: Relay for Life
Participants: Gary, Christine, Chaya and myself (and some of my friends from work)
Date: June 17-18
Website: CLICK HERE
Task: Relay team members must walk continuously around a track from 7 pm to 7 am; proceeds benefit American Cancer Society

Event: 5 Boro Bike Tour
Participants: Gary and Christine
Date: May 1, 2011
Website: CLICK HERE
Task: bike (with 30,000 other bikers) 42 miles of car-free streets through all five boroughs of NYC

Event: Tough Mudder
Participants: Gary (and some of his friends from work)
Date: April 10, 2011
Map of Course: CLICK HERE
Task: 10 miles of obstacles including: slushing through mud swamps, climbing over butter greased monkey bars, running through live wires ... and many more. Proceeds go to wounded soldiers fund.

Representing Zebras at Relay for Life...

2011-06-17T16:06:00.019-04:00

Two hours from now, I will be speaking in front of 300 people at the opening ceremonies of our school's Relay for Life event, sponsored by the American Cancer Society. Below is my speech; I have to say... I'm really nervous.

Relay for Life Speech

Many of you know me as Ms. Johnston or Ms. J – an English teacher here at PC. Some of you know me as Marlena, a cancer survivor and advocate; but my friends and family know me simply as Mar or MJ, and they have stood by my side this past year as I’ve struggled to balance being both a teacher and a cancer patient. While cancer has not taken over my identity, it certainly has changed it.

When I was first asked to speak at Relay as a cancer survivor, I was honored, humbled and a little baffled as to where to begin. So, I did what any good English teacher would do – and looked up the definition of “survivor” in the dictionary. This is what I found:

Survivor (noun)
1. a person who survives.

Not a particularly useful definition; so I looked up the word “survive”:

To Survive (verb)
1. To continue to live or exist, esp. in spite of danger or hardship
2. To manage to keep going in difficult circumstances

I like this last definition best because that’s what cancer patients do every day – they “manage to keep going” despite getting plucked out of their normal lives and plopped into a foreign land of needles, and survival rates, and doctor appointments, and chemo, and surgeries…

Susan Sontag said: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

Every cancer patient knows the exact day their obligatory stay in the “kingdom of sick” began… it’s their diagnosis date. The day you get diagnosed with cancer, everything changes. In fact, Lance Armstrong doesn’t even celebrate his birthday anymore; instead, he celebrates October 2nd - the anniversary of his cancer diagnosis.

On April 27th 2010, I was diagnosed with carcinoid cancer and began my own journey into a world which was not only foreign to myself – but to most of the medical profession as well.

Prior to my diagnosis, I had been sick for at least 6 or 7 years – but no one could figure out why. Last year, they found a suspicious looking ovarian cyst, and thought it could be ovarian cancer, which would account for my abdomen pain, weakness and severe nausea; so I had surgery to have it removed.

When I woke up from surgery, my oncologist had a big smile on her face, and told me that they had done an immediate biopsy of the cyst and were 99% sure it wasn’t cancer. She also explained that – strangely - they ended up having to remove my appendix because it looked “deformed” and that I probably had recurring appendicitis, which would explain a lot of my symptoms.

A few days later, I was resting at home when my doctor called: she said, “I have great news Marlena, I just got the biopsy back on your cyst, and you don’t have cancer…let me see if the pathology on the appendix came in yet, I’m sure it’s nothing, just routine” … I waited a few minutes while she checked the computer – and her voice changed as she said “I have to call you back.”

About 15 min later, she called back to tell me that they had found a 3 cm carcinoid tumor in my appendix, and that I would have to have another surgery called a right hemicolectomy to remove half of my colon and about 20 lymph nodes.

I had never heard of carcinoid cancer before… most people haven’t. Only about 11,000 people are diagnosed with carcinoid cancer every year in the US. It’s rare, and it is unlike any other type of cancer out there. It is caused by neuroendocrine tumors, or NETS, that secrete hormones into the system … these tumors aren’t confined to any one specific area in the body – and can develop in the digestive system, liver, pancreas or lungs.

Out of the approximate 11,000 cases of carcinoid cancer reported each year – less than 150 people are diagnosed with the type and stage of appendicenal carcinoid cancer that I have.

I had hit the “unlucky lottery.”

Carcinoid is rarely, if ever, cured – it doesn’t respond to traditional cancer treatments and doesn't ever leave the body…it’s kind of like bread mold, and spreads like little spores, disrupting all of your major systems, including the heart.

There are only a couple of doctors in the country who specialize in treatments – and because most doctors don’t know about carcinoid, an estimated 90% of neuroendocrine tumors are incorrectly diagnosed, and the average patient waits over 5 years for a proper diagnosis.

The ribbon for carcinoid cancer is zebra striped, and zebras are sort of our mascot along with the slogan “if you don’t suspect it, you can’t detect it.” The zebra is to remind doctors: “if you hear hoofbeats, don’t automatically assume it’s a horse – it could be a zebra.”

Over the past year, my role as an educator has grown. I now find myself not only talking about Shakespeare and Dante on a daily basis, but also sharing my story as a carcinoid patient – and advocating the importance of educating the general public - as well as doctors - about this rare, deadly disease.

That’s why events like Relay for Life are so important. It’s a time to share information as well as hope; a place to celebrate those who continue to fight, as well as remember those who fought bravely. Thank you for joining me and everyone else here tonight in helping to make the American Cancer Society’s dream of “more birthdays” a reality.

Alien Autopsy

2011-06-13T20:34:00.045-04:00

The problem with having a rare cancer is that every unusual symptom is cause for a trip to a specialist, who pokes and prods you as if you were some strange alien they just brought in from Area 51 for scrutiny. It gets sort of annoying after a while.

Senior Graduation

2011-06-09T19:37:00.020-04:00

My seniors tagged my car...

Every teacher calls their students their "kids" - and years ago, I purposely decided that my school "kids" would be the center of my life, rather than having biological children of my own. So for me, graduation is kind of what I imagine Mother's Day to be like - I get these heartfelt cards and sweet presents, and my kids cry and hug me as they tell me how much I helped them, and how much I mean to them ... it's pretty amazing. The only problem is - I really miss them already.

Senior Prom: two of my boys, who always made sure I got my daily dose of shenanigans

A few of my girls at graduation ...aren't they beautiful?

ACOR.ORG

2011-05-31T19:59:00.029-04:00

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.

Memorial Day Memories

2011-05-30T11:20:00.024-04:00

My father is a West Point graduate, and my mother was a military wife (as were both of my grandmothers). Memorial Day gives us a chance to say thank you... to the soldiers and families of soldiers who make the ultimate sacrifice, every day.

My mom and dad (now divorced) were married at West Point

My Dad and I on the army base in Washington State

Even tough army officers have to change diapers and make little airplane noises to get their babies to eat...

My grandpa Di Maria in his air force uniform with my grandmother. (They have been married for over 60 years.)

My paternal grandfather, who died from diabetes before I was born, in his army uniform.

(I'm not a Tim McGraw fan... but darn this video is good.)

A Para-Equestrian's Passion

2011-05-28T21:06:00.002-04:00

My beautiful mom showing off her Mother's Day present: a pictorial history of Jackie-O's lifelong passion for horses

My mom contracted polio in 1955; ironically the same year the vaccine came out - she was 5 years old. She spent 10 months in the hospital, and the polio left her with severe weakness in both legs. The doctors all said she'd never walk again, but she proved them wrong by walking, by herself with the aid of leg braces, up to the altar to receive her first Holy Communion. Afterward, she got a gift that would change her life: a ride on a white pony.

My mother in 1956 with my grandfather - taking her first ride on a horse while still wearing her leg braces, Holy Communion dress and veil

This began my mom's love affair with horses... but it wouldn't be until she was in her 50s that she would start competing competitively as a para-equestrian rider. Over the past few years, she has gotten so good that her competition level required her to get her own horse. After much searching, she finally found Andy - a beautiful white Arabian. I can't wait to meet him this summer.

Mom and her horse Andy at
REINS Therapeutic Riding Stables

My mother's grace and talent continue to inspire all who meet her, especially those in the equestrian community. Thanks mom for reminding me every day that there is no value in being a victim - only in living bravely.

Lyme Disease Testing

2011-05-22T00:13:00.004-04:00

I saw Dr. Yager (GP) last Thursday, and picked up a prescription for a Lyme disease test. Here is how that brief encounter went:

Dr: what test do you need done?
Me: the cardiologist thinks I should be tested for Lyme disease.
Dr: that's a good idea, it could be Lyme disease.
(awkward pause)
Dr: did they find something on your EKG?
Me: I think some stuff with my right ventricle.
Dr: well, carcinoid can affect the heart ... but something always shows up on an EKG.
(handing me the script)
Dr: this isn't a very good test.
Me: what do you mean?
Dr: it can come back positive when you don't have Lyme disease, and come back negative when you do.
(second awkward pause)
Me: ok
Dr: it's not a very good test; we'll call you with the results.
Me: uh, ok. Thanks

15 minutes later, I was at LabCorp, getting yet another vile of blood drawn for a test that is apparently meaningless; I have absolutely no idea what to do when I get the results.

- Posted using BlogPress from my iPhone

Update 5/28: Lyme Test Came Back Negative. (Despite Dr. Yager's distrust of the results, I'm crossing Lyme off the list.)

Black Raspberries v. Carcinoid Cancer

2011-05-20T17:00:00.037-04:00

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)

Cardiologist

2011-05-08T23:50:00.017-04:00

I saw a new cardiologist last week, who was less than impressive. Based on my experience, I put together a few tips for you budding heart doctors out there.

1. After a patient tells you that she had half of her colon removed because of a carcinoid tumor, your follow up question probably should not be, "so was it benign?"

2. Don't leave your patient alone for 20 min in the examining room while you google her disease.

3. Try to be specific when discussing test results, and avoid overgeneralized statements like: "I don't see anything very life threatening here."

4. Avoid starting sentences with: "well - you don't smell." (He wanted me to get fitted with a heart monitor halter before leaving the office - which would mean that I couldn't shower for 24-hrs).

5. Know how old your patient is, especially by the end of a 45-min appointment. (While flattering, the fact that he thought I was 26 years old, instead of 36, was a bit disconcerting.)

In addition to his bedside "quirks", my soon-to-be ex-cardiologist shared his initial findings based on my exam and echo test: irregularity (t-wave inversion) and insufficiency in the right ventricle with possible neurological disruption (causing heart rate to drop with exercise). He ordered a stress test, heart halter, and new echocardiogram. He also suggested that I get tested for lyme disease.

Initially, I scheduled the follow up tests for Thurs. - but decided to cancel them, since it's not a "very life threatening" condition; now I have time to find a different doctor before subjecting myself to more cardiac testing. In the meantime, I'll get the lyme disease test done - just to cross that possibility off the list.

Why Princesses Matter

2011-05-07T13:11:00.020-04:00

"Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed." - G. K. Chesterton

Marlena, Princess of Emerson NJ (1976)

It's a strange phenomenon. We encourage little girls to grow up to become doctors and lawyers, yet we dress them up as miniature princesses every Halloween, and relentlessly play Disney DVDs over and over again, until they become obsessed with pink tulle dresses with matching sparkly tiaras. (Go to Toys 'R Us and just try to find the "high powered business executive" themed birthday party paper-plates, streamers, and napkins... not happening.) As we grow older, our fascination with princesses doesn't go away - it simply morphs into an "adult version" of a fairy tale: the wedding.

Diana, Princess of Whales (1981)

On July 29, 1981, my mother and I watched a beautiful 20-year old girl emerge from a horse drawn carriage and walk into St. Paul's Cathedral - with her 25-foot train, trailing behind her. I was seven years old at the time, and Princess Diana's wedding is one of the first clear memories of my childhood that I have. Last weekend, I once again watched a simple girl become a breathtaking princess ...

Catherine, Duchess of Cambridge (2011)

Catherine ("Kate") Middleton married her prince in Westminster Abbey, with 2.5-3 billion people watching; four years ago, about the same number of people watched another royal gathering at Westminster Abbey: Princess Diana's funeral.

Touchingly, the last hymn sung at Diana's funeral - "Guide me, O thou great Redeemer" - was the first hymn sung at her son's, Prince William's, wedding. As I watched Kate standing at the alter in her laced bodice gown, I was immediately reminded of Grace Kelly's wedding to Prince Rainer of Monaco.

Grace, Princess of Monaco (1956)

On April 16, 1956, American movie star Grace Kelly married Prince Rainier (who proposed three days after they met) and became Princess of Monaco. Life as a princess for Grace Kelly, however, was no fairy tale. Prior to her marriage, she was a very accomplished actress, starring in three Hitchcock films, and even won the Oscar for Best Actress in 1955. After her wedding, however, Prince Rainier banned all screenings of Kelly's films in the country, and refused to allow her to act in any future projects.

Sadly, Grace Kelly died at the age of 52 in a car accident. Ironically, Princess Diana was the representative for the British royal family at Princess Grace's funeral in September of 1982. (Diana, of course, was also tragically killed in a car crash - she was only 36 years old.)

No life is filled with only happiness, but as the expression goes, if we did not feel the cold of the rain, we would never appreciate the warmth of the sun. The divorce rate in America is about 50% - but that does not stop us from spending over a thousand dollars on a single beautiful dress that we will wear for just one day, and posing for hours for an overpriced photographer - hoping he will capture our own storybook promise of "happily ever after" on film.

These moments of celebration, of joy, of beauty are absolutely necessary; whether it's a wedding, prom, or quinceanera... we all need to see flashes of fables come to life - even if only for an instant - to remind us that sometimes the dragons really do get slain, and love really can conquer all.

Happy Anniversary to Me

2011-04-27T19:30:00.021-04:00

“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.