Monday, August 29, 2011

NJ Pictures of Hurricane Irene

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)

(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.

Friday, August 26, 2011

Surfing Irene

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

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

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

Tuesday, August 23, 2011

Octreotide Scan Recap

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.

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)

Saturday, August 20, 2011

Beluga Whale - In the Bucket

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.

Friday, August 19, 2011

Second Call from the Governor's Office

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

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:

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:

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:


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.

Tuesday, August 16, 2011

Muddled Hope: Oscan Test

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.

Friday, August 12, 2011

The Return Home aka the Best Sausage Pizza Anywhere

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!)

Thursday, August 11, 2011

Kennebunkport, ME

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.