Showing posts with label cancer awareness events. Show all posts
Showing posts with label cancer awareness events. Show all posts
Saturday, October 15, 2011
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.
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:
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
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
Friday, September 30, 2011
The Importance of Hair
My New Hairdo 9/28/11Hair 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.
Friday, June 17, 2011
Representing Zebras at Relay for Life...
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 that had grown into the abdomen wall, 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.”
There are only a couple of doctors in the country who specialize in treatments – and because the mainstream medical community doesn't know about carcinoid, an estimated 90% of neuroendocrine tumors are incorrectly diagnosed, and the average patient waits over 5-7 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, potentially 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.
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 that had grown into the abdomen wall, 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.”
There are only a couple of doctors in the country who specialize in treatments – and because the mainstream medical community doesn't know about carcinoid, an estimated 90% of neuroendocrine tumors are incorrectly diagnosed, and the average patient waits over 5-7 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, potentially 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.
Sunday, April 17, 2011
CCF Symposium on Neuroendocrine Tumor Management
I just registered for the Carcinoid Cancer Foundation's 14th Annual Symposium, entitled "Neuroendocrine Tumor Management: The Era of Personalized Medicine" on Sunday, May 1st from 1:00 pm to 5:30 pm at Mount Sinai Hospital in New York City. The symposium will feature three NET medical experts, sharing their insights and expertise:
Richard R.P. Warner, MD
Professor of Medicine, Mount Sinai School of Medicine
Director of the Center for Carcinoid and Neroendocrine Tumors
Mt. Sinai Hospital, NYC
Medical Director, Carcinoid Cancer Foundation
Edward M. Wolin, MD
Co-Director, Carcinoid and Neuroendocrine Tumor Program
Medical Oncology, Samuel Oschin Cancer Center
Cedars Sinai Medical Center, LA California
Eugene A. Woltering, MD, FACS
The James D. Rives Professor of Surgery and Neurosciences
Louisiana State University Health Sciences Center
New Orleans, Louisiana
To register for the symposium, click HERE.
Wednesday, March 9, 2011
Zebra Spotting at "Relay for Life"
For years, I have heard about "Relay for Life" - the major fundraising event for the American Cancer Society. This is the first year, however, that Paramus Catholic High School has decided to host this community event, and the first time that I will be participating.The event always begins with a "survivors lap" - and as I circle the PC track, I'll be sporting as many zebra-striped accessories as possible in solidarity with the carcinoid community.
Below is an overview of the event from the American Cancer Society's website:
"The American Cancer Society Relay For Life is a life-changing event that gives everyone in communities across the globe a chance to celebrate the lives of people who have battled cancer, remember loved ones lost, and fight back against the disease. At Relay, teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Because cancer never sleeps, Relays are overnight events up to 24 hours in length.
Although every Relay For Life is different, there are certain traditions at all Relays, no matter where they are held. These traditions help participants celebrate, remember, and fight back.
Celebrate - The Survivors LapRelay starts with a Survivors Lap an inspirational time when survivors are invited to circle the track together and help everyone celebrate the victories we’ve achieved over cancer. The Survivors Lap is an emotional example of how Relay participants are creating a world with more birthdays like those of each individual on the track.
Remember - The Luminaria Ceremony
After dark, we honor people who have been touched by cancer and remember loved ones lost to the disease during the Luminaria Ceremony. Candles are lit inside bags filled with sand, each one bearing the name of a person touched by cancer, and participants often walk a lap in silence.
Fight Back - The Fight Back Ceremony
Last, there is a Fight Back Ceremony, where we make a personal commitment to save lives by taking up the fight against cancer."
PLEASE CLICK HERE TO VISIT MY PERSONAL "RELAY FOR LIFE" FUNDRAISING PAGE
Friday, November 12, 2010
PC Students Join the Fight Against Carcinoid Cancer
PC Students Advocate for Carcinoid Cancer AwarenessLast 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 AnchorsEvery 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 TableOn 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 ProclamationOur 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.
Tuesday, November 9, 2010
The Wait is OVER: WNCAD is Here!
visit: http://netcancerday.orgWhat 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
Saturday, October 30, 2010
Making Strides Against Breast Cancer
On Sunday, October 24th I joined some of our students (PC Cheer Team and PC Cancer Awareness Club) for the "Making Strides Against Breast Cancer" 5k walk at Bergen Community College, which is the biggest event in North Jersey helping to raise money and awareness for Breast Cancer patients and survivors. Similar walks are held all over the country during October (Breast Cancer Awareness Month) and there were over 5,000 walkers who turned out for our event - including about 50 kids from our school. It was a perfectly crisp October day, and the sea of pink-clad walkers looked like a beautiful ribbon winding through the brightly colored fall trees. The event raised over $546,000 in donations for cancer research.
Pictures: (top) a group photo of our students who participated in the event; (bottom) I walked with two of my lovely seniors - who are both captains of the varsity cheer team
To Read News Article About the Event: "Thousands make the walk in Bergen County to help breast cancer suffers" - Click HERE
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