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

Think Different...

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?

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)