Thursday, October 13, 2011

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

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


  1. Congratulations Marlena on all of your hard work! I have a question; why do they want to continue testing your ovarian cyst? I had a cyst on my last ct that was basically ignored. I have been having similar symptoms that you have been having and am actually scheduled to have my gallbladder removed on 10/26. I will say... this disease is maddening! I have wondered if my gallbladder has "gone bad" after my hemicolectomy. Who knows? I have loved reading your story- it closely mirrors my own- except you are about 6 months ahead of me on your surgery:) Thanks for writing your story. It helps to know that there are others out there like me. Regan Reding

  2. Hi Regan!

    Are they taking your gallbladder out so that you can start octreotide shots? A lot of noids I talk to say that is why they get theirs out... you should definitely ask the docs why they want to take it - I've learned to question everything (sometimes driving my docs crazy).

    I've had a history of ovarian cysts with complications ... in fact - that's how they found my carcinoid, they were doing surgery on my ovaries and found my appendix was completely deformed (3 cm tumor inside). So I think it's more just my history that a normal course of action... the last time I went to my GYN he didn't like how some things looked on a TV ultrasound - so this just makes it more pressing that I actually follow up.

    Your kind words are much appreciated. Please let me know if there is anything I can do to help... I don't know a lot - but have made a lot of cyber carcinoid friends who do :) And yes, it is a completely maddening disease - hang in there.

    wishing you the best,

  3. i've said it many times, but it is the truth - you are my hero. i'm so very lucky to have you in my life. :)

  4. That Awesome, Ms. J! You are doing it! You are raising awareness little by little one step at a time. I am so proud of your accomplishments and how you never give up!
    I was planning to visit PC on Nov 10th, but unfortunately the way my schedule works out, in school and stuff, doesn't allow me to be there. You can definitely expect to see me sometimes before Thanksgiving though. I really miss PC.

    Just as a last side note for you, as Rob Schneider once said in the 1998 movie of "The Waterboy", "YOU CAN DO IT!" Go Ms. J!

  5. I just found you from Renn's blog page. My BEST friend is has her inner Jackie O going on and she too has an "orphan" cancer. Your blog title caught my immediate attention!!!
    I'm just one of the pink people (although I'm PROUD to say I had a rarer type of breast cancer so I can differentiate myself from the pack). Just wanted to take a second to say hi to a fellow Sloan patient. And to say you have one more friend at your back.
    Good job on the proclamation. Love a woman who doesn't stop til she gets what she wants!!


  6. Awww thanks Steph! I can't wait to hear all about college - did you consider doing the pre-law program?

    AnneMarie - thank you for the kind words! You should definitely check out this amazing blog: about her fight against advanced stages of breast cancer. She's amazing.

  7. Marlena, Blessings to you. I also Requested Gov. Christie to proclaim November as Pancreatic Cancer Awareness month. The hard copy of the proclamation arrived in the mail last week. I lost my husband to this disease 6 months ago and have made it my "mission" to get the word out with regard to education and awareness. I will hold you in my prayers. Julie

  8. Thanks Julie, and you are in mine. I'll make sure our cancer awareness club at school does something for pancreatic cancer awareness.