Thursday, January 27, 2011

Educating the Medical World about Carcinoid Cancer - One Dentist at a Time

I had my first appointment with my new dentist, Dr. Goldberg. Of course, in my new patient packet, I had to fill out a general Patient Medical History. You know the form; it's the one that lists a million possible illnesses - diabetes, heart disease, cancer etc - and you just check "yes" or "no" next to each one, indicating whether or not you have ever been diagnosed or treated for the illness in question. I have to admit, it felt a little weird checking off the "yes" box next to "cancer" for the first time, and writing in "carcinoid" in the space provided for "type".

After routine x-rays and a cleaning by a very friendly dental hygienist, I met Dr. Goldberg - who started with the normal chit-chat while reading over my file. Suddenly, he stopped mid-sentence and asked, "Carcinoid cancer? What's that? I've never even heard of that before."

I launched into my normal spiel: "It's a rare form of cancer caused by neuroendocrine tumors, which secrete hormones. Unlike other cancers, these types of tumors can grow in many different places, including the lungs and digestive system."

Dr. Goldberg: "How did they find it?"

Me: "They actually found it by accident. I was having surgery to remove a potentially cancerous ovarian cyst when my doctor thought my appendix looked deformed so she removed it; the tumor was inside. They think I must have had the cancer for at least 5-years becuase the tumor was so big, and I had to get several lymph nodes removed and have a right hemicolectomy to stop it from spreading."

Dr. Goldberg: "What's a hemicolectomy?"

Me: "It's when you take out half of the colon. I had it done at Sloan Kettering, and they did an amazing job. The most incredible part is that my surgeon was able to do the entire surgery through one port - meaning, one laparoscopic incision."

Awkward Pause... followed by me asking Dr. Goldberg if he wanted to see the scar. He said he really did, but didn't want to ask. So, I gingerly, slightly lifted up my sweater to reveal the small quarter-size scar above my bellybutton.

He gasped: "I can't believe it. That's absolutely amazing. They were able to get all that out through there?" Yup. Believe it doc.

It is insanely crazy when you really think about it - what they can do with surgeries now. However, even with the less-invasive surgeries, it's important to note that not all laparoscopies are the same. In fact, Dr. Nash was the only doctor I consulted with who could do a single-incision laparscopic right hemicolectomy. Even the renowned NJ Cancer Institute, where my surgery was initially scheduled, would have made at least 3 incisions for their laparscopic procedure. One port not only reduces scarring (I already had three from the first surgery), but it is also safer because there is only one potential infection site. This was especially lucky for me since my wound did get infected...can you imagine if I had three infected, open wounds? Just another reason why (as my students say): I <3 Sloan Kettering.

Three-Incision Laparoscopic Surgery (top) - NJ Cancer Institute
Single-Port Laparoscopic Surgery (bottom) - Sloan Kettering

Friday, January 21, 2011

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:

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 In fact, the Paramus Catholic students' efforts were featured by the Carcinoid Cancer Foundation's blog ( and

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)

Tuesday, January 18, 2011

Yale Medical School Graduation Address

A friend of mine sent me an email with a light blue hyper-link at the bottom. The email itself was short: "Do yourself a favor and watch this lecture. It won't take long... 15 minutes max. I promise it will inspire you. I would not send something that wouldn't!"

I deeply trust and respect this friend, so in an effort to try to nurture myself as much as I nurture my students, I closed my grade book, put down my red pen, and followed the link to a videotaped keynote address given at a medical conference in Southern California by Dr. Donald M. Berwick, President and CEO for the Institute for Healthcare Improvement (IHI).

First impressions - this guy was not going to win any "charisma awards" anytime soon ... he was monotone, circuitous, and flat; I began to doubt my friend and started eying the stack of senior essays neatly piled on my desk.

About six minutes into the video clip, Dr. Berwick finally got to the good stuff. He explained that for the conference keynote address he would actually be "redelivering" his graduation address to the Yale Medical School class of 2010. His whole demeanour changed; I sat back and gave him my attention.

Anyone who has been very ill, or loved someone who has been very ill, should watch this video. If you prefer to read it - you can find the text HERE. Personally, I found it more moving to hear Dr. Berwick deliver it himself (despite the bumpy start) which you can find HERE.

His remarks were largely focused around an email he got from a woman, Mrs. Gruzenski, who wrote to him advocating for an administrative change to hospital visiting hour policies. Her email explained the cruelty of being strictly limited to only seeing her husband, Dr. Gruzenski, to four times a day for 30 minutes during the last few days of his life in the ICU. A small portion of Dr. Berwick's remarks appear below:

"...We will have to imagine ourselves there. 'My husband and I loved each other very deeply,' she writes to me, 'and we wanted to share our last days and moments together. We both knew the gravity of his illness, and my husband wanted quality of life, not quantity.'

What might a husband and wife of 19 years, aware of the short time left together, wish to talk about - wish to do- in the last days? I don't know for Dr. and Mrs. Gruzenski. But, I do know for me.

I would talk about our children. I would talk about the best trip we ever took together, and even argue, smiling about whose idea it was. I would remember the black bear we met in a clearing in the Wrangell - St. Elias Range; the cabin at Assiniboine; the Jotenheim mountains of Norway. I would remember being lost in Kyoto and lost in Prague and lost on Mount Washington, and always found again. Mushroom soup at Cafe Budapest. And seeing Jessica born, and Ben, and Dan, and Becca.

We would have so much to talk about. So much. The nurses would pad in and out of the hospital room, checking i.v.s and measuring pulses and planning their dinners and weekends. And none of what the nurses and doctors did would matter to us at all; we wouldn't even notice them. We would know exactly who the visitors were - they, the doctors and nurses. They, they would be the visitors in this tiny corner of our whole lives together - they, not us. In the John Denver song it goes this way, '... and all the time that you're with me, we will be at home.'

Someone stole all of that from Dr. and Mrs. Gruzenski. A nameless someone. I suspect an unknowing someone. Someone who did not understand who was at home and who was the guest - who was the intruder. Someone who forgot about the black bear and the best mushroom soup we ever had - the jewels of shared experience that glimmer with meaning in our lives. Someone who put the i.v. first, and the soul second.

...In return for your years of learning and your dedication to a life of service and your willingness to take an oath to that duty, society will give you access and rights that it gives to no one else. Society will allow you to hear secrets from frightened human beings that they are too scared to tell anyone else. Society will permit you to use drugs and instruments that can do great harm as well as great good, and that in the hands of others would be weapons. Society will give you special titles and spaces of privilege, as if you were priests. Society will let you build walls and write rules.

And in that role, with that power, you will meet Dr. and Mrs. Gurzenski over, and over, and over again. You will meet them every day - every hour. They will be in disguise.

...Decide. You can read the rules. Or, you can say, 'Pardon me'. 'Pardon this unwelcome interruption in your lives. Thank you for inviting me to help. Thank you for letting me visit. I am your guest, and I know it. Now, please, Mrs. Gruzenski, Dr. Gruzenski, what may I do for you?'

...You must take your white coat off. You must recover, embrace, and treasure the memory of your shared, frail humanity - of the dignity in each and every soul. When you take off that white coat in the sacred presence of those for whom you will care - in the sacred presence of people just like you - when you take off that white coat, and, tower not over them, but join those you serve, you become a healer in a world of fear and fragmentation, an 'aching' world as your Chaplain put it this morning, that has never needed healing more."


Thank you to all my doctors who were and continue to be truly part of my healing - and always put Gary and I before the cancer. Dr. Nash, Dr. Wagreich, Dr. Maloney Patel - thank you for taking your white coats off and helping me every step of the way in my fight against this disease, instead of forcing me into battle alone. I can never thank you enough.

Monday, January 17, 2011

Pastina, Ramen, and Falafel: Jersey Comfort Food

This Christmas break, I was sick; really sick. (Luckily my body had the good sense to wait to completely fall apart until I had some time off from teaching. It's hard enough to function when you're feeling lousy - try being "on stage" in front of a 140+ teenagers while feeling lousy.) To help lift my spirits, periodically throughout the week-long holiday, Gary would make my favorite childhood comfort food: Pastina.

When I moved to California, Pastina was next to impossible to find outside of an Italian specialty store. Here in New Jersey, boxes of Pastina line the shelves of every grocery store. Growing up, I was plagued by severe ear infections, and my Sicilian mother would make me heaping bowls full of these little pasta stars, mixed with butter and salt, whenever my ears would ring and bleed; for me, Pastina remains the epitome of comfort food.

But not even Pastina sounded good last week, during our second snow day of the season. Usually teachers love snow days as much as the kids, but I woke up with nausia, a fever, and a soar throat. So Gary, our friend Chaya and I sought out some relief from the cold at the bottom of a steaming bowl of hot ramen soup at Rai Rai Ramen in New Brunswick, NJ.

Magnet from Rai Rai Ramen - Permanently Stuck On Our Fridge.

Pictures from Rai Rai Ramen by Amnet NY Times

It was so delicious - salty and sweet, with hot steaming noodles to slurp up.

And wouldn't you know it - this Martin Luther King Jr. long weekend, I once again came down with a fever, soar throat and joint pain - and once again, Gary and I went in search of some comforting food. This time, we found ourselves at a vegetarian mecca: Maoz Vegetarian - which is a "fast food" chain specializing in authentic falafel and vegetarian food.

The restaurant chain has not only gotten some major press, but it is also pretty easy to spot - it's floor to ceiling green tile with a couple of wooden benches. In addition to six US locations, there are Maoz Vegetarian franchise restaurants in The Netherlands, UK, France and Spain.

Gary Checking Out Menu at Maoz in New Brunswick, NJ

Maoz's "Meal Deal" - Picture from Maoz USA Website

I ordered a falafel and Belgian fries, and loved every bite. Perhaps you are noticing a trend? While all of my comfort food is delicious, for the most part it's also simply prepared and vegetarian.

Gary and I are both trying to eat more organic food, and be socially responsible in our food choices. What does this mean? Basically, it means that we are trying to eat real food instead of "edible foodlike substances", and we won't eat meat unless it comes from an organic farm that raises and slaughters its own meat, such as Griggstown Farm or Simply Grazin (both in Princeton, NJ). Our general lifestyle change has been inspired by Michael Pollan's books (In Defense of Food, Omnivore's Dilemma, Food Rules), Foer's book Eating Animals, and food documentaries including Food Inc. and Fresh.

As a cancer survivor, it's important to limit any exposure to harmful carcinogens, and controlling what I put into my body is a critical step in my ongoing fight against a recurrence of carcinoid cancer. Now, if I drink milk - it's whole milk from grass-fed, hormone-free cows; if I eat a granola bar - it has only a handful of organic, easily-recognizable ingredients... I check labels, I do research, I make sure I know what I'm digesting. I think that every cancer patient should read and watch the above resources, so that they can learn what to eat in order to increase their (and the planet's) chances of survival. If you don't have time to read a book or watch a documentary, try using a mobile-tool such as "fooducate" (for the iphone) to help make healthier choices in the grocery store.

Sunday, January 9, 2011

New Year's Resolution

The best advice I ever got concerning new year's resolutions was dispensed by one of my favorite grad school professors. She said that most people set themselves up for failure because they plan to unrealistically change their whole life by just uttering a single vague sentence: I'll eat healthy; I'll exercise everyday; I'll stop procrastinating.... "If you really want to make a change" she said, "change your life by one degree."

She reminded me that one degree can alter outcomes drastically; after all, the difference between water freezing or boiling lies within one degree. The overall message is a good one - just one small change can significantly impact your quality of life.

So this year, my resolution is to keep what I'm calling a "thankful journal" where I write down - every day - at least three things I'm thankful for. Since I've started keeping the journal, I have become more aware of all the little things that make my life so wonderful - little things that previously, I would have taken for granted. Life is too short not to relish in the beauty of it, and now, at least for a few minutes every day, I remind myself of that fact.

My "Thankful Journal"

"If you think you're too small to make a difference or that your voice is too small to be heard, you've obviously never been in a tent with a mosquito" - unknown

Friday, January 7, 2011

ASCO Cancer Foundation's Calendar

It's a new year, and time for a new calendar.

Excitingly, this year, one calendar in particular has very special meaning for me. The American Society of Clinical Oncology (ASCO) Cancer Foundation is the leading professional organization representing physicians who care for people with cancer. Its mission is to improve cancer care and prevention.

Every year, the ASCO solicits artist submissions from cancer survivors and their families for their calendar: "Expressions of Hope". My mother, a talented painter, submitted a small oil painting of a little bird, which was selected for the month of April:

American Society of Clinical Oncology Calendar

Month of April: my mother's painting "The Song Bird" and a quote

My mom's quote reads: "While [Marlena's] most recent surgery was successful, the recovery was difficult with a slew of minor complications which wore down her spirit; my song bird seemed to have lost her voice. I reassured her that this latest challenge could be met... with grace and dignity."

Now, a reflection of my mother's strength and talent will not only enrich my life, but will also grace the walls of thousands of doctors who help patients find hope in the fight against cancer. Thanks mom. (For more of my mom's paintings, visit her online gallery.)

Splendour in the Grass - William Wordsworth

What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find,
Strength in what remains behind...

Click HERE to see the write up about my mom's painting on the Carcinoid Cancer Foundation's blog.