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.

6 comments:

  1. Marlena,thank you for participating in the Relay of Life,where you plan to speak about Carcinoid Tumors.

    May God Bless you.
    Joyce Dobbs,Arkansas

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  2. Such an eloquent speech! I have no doubt you will deliver it beautifully.

    ~stephanie

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  3. Thanks for the vote of confidence! It actually went very well and everyone seemed to love it. I'm glad it's over! (Despite being a trial attorney and a teacher, I still get nervous / hate speaking in front of large crowds.)

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  4. christine gozickJune 20, 2011 at 6:55 AM

    i am so proud of you! you did an amazing job! i was so happy to be a part of this with you, and would really love to do it again. it was a pretty neat experience.

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  5. Awww thanks Christine and Six - love you guys too.

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