WNCAD Wrap Up: 2011

Christmas break means time to catch up... and I finally was able to mail off the 2011 Worldwide Net Cancer Awareness Day (WNCAD) signed proclamations to Grace Goldstein at the Carcinoid Cancer Foundation.

WNCAD: November 10th

Our students at Paramus Catholic High School were able to gather 959 signatures in one day (which is 167 more signatures than last year!) Also, our school newspaper, The Paladin Press, featured an article about carcinoid cancer as well as a student poem in honor of WNCAD. Even the varsity members of my mock trial team showed off their zebra striped bracelets during weekly practice. When WNCAD was over, students wanted to do more - and have already started planning for NET Cancer Day next year.

Additionally, one of my seniors who graduated last year delivered a presentation to her public speaking class at St. John's University on November 10th about carcinoid cancer, and had students from the course sign the WNCAD proclamation.

Overall, it was a tremendous student display of support and empathy - far from the lackadaisical, morally adrift stereotype many people have of today's teens.

The Paladin Cancer Awareness Club gathered signatures and passed out information about carcinoid cancer on Nov. 10, 2011

Some members of my Mock Trial team, showing off their stripes...

PC's paper featured an article and poem about carcinoid

NET Cancer Awareness Day Poem

by Selena Hart

Behind the trees, you hear them.

A soft pat against the dirt

a calm stride to the pool of blue.

You picture a strong, bold steed

a mane of gold, a sandy body.

You ready yourself to tame it.

To saddle it and ride away.

You breathe in, and push through the trees.

Stunningly enough, the mane you saw as gold

is black as coal.

His sandy body is quite the contrast,

stripes as black as ash and white as snow.

Your shock has stunned him too.

As he runs, you learn something new.

The next time you hear hooves,

it could be a zebra.

NET Cancer Awareness Day is Tomorrow!

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!

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

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"

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

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 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.

Call from the Governor's Office

After leaving school Thursday, I noticed a voice mail on my cell phone from an unknown number. After I played the message, I pulled into the nearest parking lot and replayed it.

The caller identified herself as "Liz" from Governor Christie's office, and politely requested that I return her call at my earliest convenience. I immediately called back, and to my great surprise - Liz picked up on the second ring.

She explained that she was following up on my email, asking the Governor to declare November 10th - NET Cancer Awareness Day in NJ. (See my Jan 21st blog post: "Ask Governor Chris Christie (NJ) to Support NET and Carcinoid Cancer Awareness")

She asked me if I could send her some proposed language for a Proclamation ... no promises of course; she was just looking into the matter. Below is the email I sent to her. I am excited at the possibility of Governor Christie joining the fight against NET cancers.
_______________________________________________________________

From: Marlena Johnston [mailto:marlenajohnston@hotmail.com]
Sent: Thursday, March 03, 2011 8:21 PM
To: Liz Ortiz
Subject: Proclamation Supporting Neuroendocrine Tumor (NET) Cancer Awareness

Dear Liz,

It was a pleasure speaking with you today about the possibility of Governor Chris Christie becoming the 17th United States governor to join the global campaign supporting neuroendocrine tumor (NET) cancer awareness.

The first Worldwide NET Cancer Awareness Day (WNCAD) was held on November 10, 2010, and was an international movement coordinated by carcinoid and neuroendocrine tumor cancer advocacy groups around the world, including: Australia, Bulgaria, Canada, Colombia, Czech Republic, Denmark, Germany, Japan, Netherlands, Norway, Poland, Singapore, Sweden, United Kingdom and United States. As part of the campaign, a Proclamation urging NET cancer awareness was created, and has since been signed online by more than 4,600 people on six continents, and in person by thousands more. (Read more about the campaign at www.netcancerday.org). I have attached a copy of the WNCAD Proclamation for your review. There are already plans for a second international WNCAD on November 10, 2011.

I was diagnosed with carcinoid cancer in April of 2010, and would have died if my neuroendocrine tumor wasn't "accidently" found during another surgery. My cancer went undiagnosed for at least 5 years - allowing it to metastasize - in large part because of the lack of education in the medical community about neuroendocrine tumors. As the WNCAD slogan states: "if you don't suspect it, you can't detect it." Therefore, I urge Governor Christie to issue a Proclamation declaring November 10th as NET Cancer Awareness Day in the State of New Jersey, or join Governor Deval Patrick of Massachusetts in declaring the entire month of November as NET Cancer Awareness Month.

Please do not hesitate to contact me if I can be of any further assistance. I'd appreciate it if you could confirm receipt of this email and the attachment - just to ensure I have the correct email address.

Sincerely,
Marlena Johnston

Ask Governor Chris Christie (NJ) to Support NET and Carcinoid Cancer Awareness

Today was another snow day, and I took the opportunity to grade essays, sleep-in past 4:30 am, and write an email to Governor Chris Christie (NJ) - asking that he join the other 16 US governors who have signed proclamations in support of NET and Carcinoid cancer awareness:

Dear Governor Chris Christie,

As a New Jersey resident and survivor of carcinoid cancer, I am writing to you in hopes that you will become the 17th governor to proclaim November 10th as Worldwide NET and Carcinoid Cancer Awareness Day.

Last April, at the age of 35, I was diagnosed with carcinoid cancer, which is a rare cancer caused by neroendocrine tumors. I was sick for over 5 years, but because carcinoid cancer is so rare, doctors didn't suspect it as the cause of my illness. When they finally did discover the neuroendocrine tumor in my appendix, it had grown so large that I had to have several lymph nodes and 1/2 of my colon removed at Sloan Kettering Cancer Center in order to stop any further spread of this deadly disease. (To learn more about my personal journey in fighting carcinoid, visit my blog: channelingjackieo.blogspot.com)

At the end of last school year, I made the difficult decision of sharing my carcinoid cancer diagnosis with the students, faculty and staff of Paramus Catholic High School (PC), where I teach 11th and 12th grade English. The outpouring of love and support from the PC community was overwhelming and humbling. I managed to convince my doctors to wait until the summer to schedule my surgery, so that I could finish out the school year. When I returned to the classroom this September, I was inspired and moved by the students' continued care and concern, and their commitment to raising awareness about this rare cancer.

November 10, 2010 was the first ever "Worldwide NET Cancer Awareness Day" (WNCAD), and the PC students designed their own mini-campaign to educate the school community about my rare cancer. In particular, students featured zebra stripes (carcinoid awareness ribbon colors) on the morning news broadcast; decorated bulletin boards with carcinoid information; and distributed carcinoid awareness pamphlets, pins, stickers and bracelets. Most impressively perhaps, they gathered 792 signatures for the WNCAD Proclamation (which can be found at www.netcancerday.org). In fact, the Paramus Catholic students' efforts were featured by the Carcinoid Cancer Foundation's blog (www.carcioniod.org and carcinoid.wordpress.com).

Won't you please join in the campaign to increase awareness about NET cancers and join 16 other governors in declaring November 10th as Neurendocrine and Carcinoid Cancer Awareness Day?

Thank you,
Marlena Johnston

16 Governors Proclaim November 10th as Worldwide NET and Carcinoid Cancer Awareness Day: Deval Patrick (Massachusetts), Arnold Schwarzenegger (California), Bobby Jindal (Louisiana), Brian Scweitzer (Montana), Pat Quinn (Illinois), Dave Heineman (Nebraska), Haley Barbour (Mississippi), Chet Culver (Iowa), Mark Parkinson (Kansas), Brad Henry (Oklahoma), Mike Beebe (Arkansas), Jennifer Granholm (Michigan), David Paterson (New York), M. Jodi Rell (Connecticut), Jay Nixon (Missouri), Jim Doyle (Wisconsin).

_______________________________________________________

If you would like to help convince Chris Christie to issue a WNCAD proclamation, simply copy and past the below email and submit it online HERE.

Dear Governor Christie,

One of your constituents - a teacher at Paramus Catholic High School and carcinoid cancer survivor, Marlena Johnston - recently requested your support in the campaign to raise awareness for neuroendocrine tumors and carcinoid cancers. I support her in her efforts, and respectfully ask that you join the governors of: Massachusetts, California, Louisiana, Montana, Illinois, Nebraska, Mississippi, Iowa, Kansas, Oklahoma, Arkansas, Michigan, New York, Connecticut, Missouri and Wisconsin in proclaiming November 10th as "Worldwide NET Cancer Awareness Day".

Thank you,
(your name)

PC Students Join the Fight Against Carcinoid Cancer

PC Students Advocate for Carcinoid Cancer Awareness

Last year, I made the difficult decision of sharing my Carcinoid cancer diagnosis with the students, faculty and staff of Paramus Catholic High School (PC), where I teach 11th and 12th grade English. Since then, the outpouring of care and concern from the PC community has been overwhelming; and when I mentioned that this year was the first ever Worldwide NET Cancer Awareness Day (WNCAD), my students were eager to advocate for an increased awareness of this rare disease. Below are just a few of the ways that PC joined the fight against Carcinoid cancer:

Paladin News Network Anchors

Every morning, the students, faculty and staff of Paramus Catholic High School tune into a live broadcast over Paladin News Network (PNN) for prayer, the pledge, and announcements. During the month of November, the students of PNN decided to help raise awareness about neuroendocrine tumors by delivering their telecast in front of a greenscreen featuring zebra stripes and a Carcinoid Cancer Awareness logo.

Paladin Awareness Cancer Team Table

On November 10th, the students of PACT - PC's cancer awareness club - set up a table outside of the cafeteria to distribute information about NET cancers. They also created and administered a quiz on Carcinoid cancer, which over 300 students took in order to win prizes such as zebra striped pins, stickers, and bracelets. PACT also decorated their bulletin board with zebras and facts about Carcinoid cancer.

792 Signatures: WNCAD Proclamation

In addition to student-sponsored advocacy, on November 10th my colleagues in the English department took a break from vocabulary, grammar, composition, and literature to talk about my story and encourage students to sign the WNCAD Proclamation, which acknowledges the need for increased awareness about NET cancers and better access to treatment for Carcinoid cancer patients. Because of their efforts, we gathered 792 signatures in a single day.

Our school's mascot, a Paladin, is a knight of uncommon valor and virtue who fights injustices in the world - I'd say that the students and faculty of PC have certainly lived up to the Paladin legend through their incredible efforts in supporting the Carcinoid cancer community.

The Wait is OVER: WNCAD is Here!

visit: http://netcancerday.org

What is WNCAD you ask? Only the first ever Worldwide NET Cancer Awareness Day (Nov 10th). Wear zebra print (or at least black and white) tomorrow to show your support for the Carcinoid Cancer community.

"Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one." ~Jane Howard