¡Viva la cebra!

I have been auditing a Spanish class this quarter, not to receive a grade but simply to learn. It has been decades since I have studied the language. We have our final exam on Thursday. It is difficult to believe that the quarter is over.

Yesterday, our final project was to be delivered.  It had both a written and oral component. Orally, we were to deliver it from memory, not read it.

We were to tell a story of “Una Fiesta.” It was to be in third person, in past tense. and between two and four minutes in length, using vocabulary and concepts that we have learned these past 10 weeks.

At the last minute and with my professor’s permission, I decided to do it a little differently than what I might have first considered. I pushed myself to tell a true story. My story. So, I did not write it until Monday night, which made memorization of it more difficult, considering the words I would have to research and speak.

I began by passing out “Zebra Awareness” ribbons that I made the night before. It actually gave me some time to get comfortable. One might say it was a “stalling technique.” (There are some effective strategies that I have learned as a presenter over the years!) At the end of the speech, I passed out information sheets with symptoms, misdiagnoses, and websites for more information on Neuroendocrine Tumors (Carcinoid Cancer).

This was my first “speech” that I have delivered in Spanish. Though it was not long, and it may not have been completely understandable to the other first-year college Spanish students who had to suffer through my stumbles and less-than-perfect pronunciation,  I completed it, and I was able to plant the seed of awareness for eight more people.  That was as important to me as writing and speaking this message in Spanish.

* * * * * * * * * * * * * * *

Tres meses antes, la mujer de 56 años escuchó palabras que nadie debería escuchar.

“Lo siento, pero tienes el cáncer carcinoide neuroendocrino de la Etapa 4 en todo su sistema. No hay quimioterapia ni cura.”

El doctor continuó y dijo: “Tienes seis meses o un año.”

Nada la preparaba para esas palabras. Era surrealista. Se sentía afortunada de estar, pero tenía pocas esperanzas de vivir hasta el final del año con este raro cáncer, representado por una cinta de cebra.

Ella planeó su fiesta de cumpleaños final en agosto en su restaurante italiano preferido. Ella invitó a 200 personas. Por supuesto, no todos podían estar allí, pero 40 invitados celebraron a su amiga. Una amiga, a quien no había visto en 20 años, la sorprendió volando desde California para cenar con ella.

Todos los invitados comieron ensalada, pasta y pizza. Bebieron vino. Se rieron juntos y disfrutaron de la noche.

La mujer no murió en seis meses ni en un año. Ella no murió en dos años. Esa noche fue hace más de cuatro años y medio.

Yo soy esa mujer. Soy una cebra. Y estoy viviendo CON cáncer, no muriendo de él.

¡A la vida!  ¡Viva la cebra!

(To read the English translation, click here.)

carcinoid

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The Importance of November 10th

Most, who have had a relationship with the United States Marine Corps (USMC), know that November 10th marks the USMC’s birthday. Today is their 241st birthday.  So, I begin by wishing all of you who are Marines–“Once a Marine, always a Marine”–a very happy birthday. Semper Fi!

November 10 also represents something very important to me.

November 10th is Neuroendocrine Tumor (NET)/Carcinoid Cancer Awareness Day. November is Awareness Month for this cancer that has been previously considered a rare cancer. It is now being recognized around the world  as the day and month to build awareness of this cancer.

As many know bits and piece of my story with this cancer,  I am living with Stage 4  Neuroendocrine (aka Carcinoid) cancer, having been diagnosed in May 2012. There is no cure (yet).

As I have been told by several in the medical field that I have known, there was not a lot of teaching of this cancer during their time in medical school.  “Under an hour,” and “15 minutes” are two answers that were shared with me.

This cancer is generally misdiagnosed on average of 10 years, and over 90% of us, who are called “Zebras,” are diagnosed in advanced Stage 4 levels.

In my case, some of the things that I had heard suggested, tested for, diagnosed with, and/or treated for over a period of over 20 years were (not necessarily at the same time and in no particular order) : Gastroesophageal reflux disease (GERD), Irritable Bowel Syndrome (IBS), Diverticulitis, Asthma, and more.

I am not here today to rehash things that you can read elsewhere on my blog, but simply to let you know that today is a day that I want have you consider learning what you may not know.  I knew nothing (and I fear many medical professionals had no idea either) of this disease before my diagnoses in the spring of 2012.

I believe true learning comes from discovery, when we are challenged in some way to find out answers, rather than being force-fed the information.

So, my challenge you is to start by discovering a little today, by becoming curious enough to find out WHY we are called “zebras.” Let it begin there.

Then, I want you to encourage you to find some other bit of information that you find interesting about this disease, and then share this information on your social media sites. Begin by becoming aware, then by passing awareness along.

Feel free to share my story, if you wish, but I IMPLORE YOU to start by learning more yourself.  There are many people who are (were) walking around with this cancer and do  (did) not know it yet.

I am one of those people.

Please keep in mind that today, November 10th, is one day to remember to build awareness. Or to say, “Happy birthday!” to a Marine.  But we can have 365 days of building awareness. Or thanking a veteran.

It all starts with one day.  Today is the day to begin.

Check out these resources to start:

http://carcinoidawareness.org/  and  http://carcinoid.org

Zebra 1

 

Funk(ing) the Dumb Stuff on an Anniversary

carcinoid

The longer we live, the more apt we are to have days that remind us of life’s events.

Anniversaries of things we would like to remember, or wish we could forget, will stick with us.  Some of us are better at remembering those dates than others.  Anniversary dates of birthdays, weddings, divorces, being hired or being fired, accidents, other days that simply have some sort of impact on us and our lives, both big and small, become a month, weekly, and (dare I say?) daily occurrences, especially as we approach our golden years.

Some of these days coincide with normal holiday seasons and, if the event has been particularly challenging or painful, we never look at the holiday or month or season quite the same. As we anticipate the anniversary of the event, the grey clouds of doom and gloom seem to hover over us, and we can dread the very act of waking up to face the days ahead.

We can get caught in a funk.

If this funk were the music of the band, Tower of Power (ToP), then it would be a lot more fun. But this is the kind of funk that sucks the very life out of you.

I have been approaching this funk for about six weeks now, as I foolishly continue to recall or ruminate on the dates, and remember situations and stories that take me back to April to July of 2012.

Today, I asked my sister, Sonja, if she knew what today was. She remembered, yet I proceeded to mention that this was the date four years ago that I was informed of stage 4 diagnosis with neuroendocrine tumors (NETs)/carcinoid cancer. He said the prognosis was “six months to a year, two if lucky.”

I cannot even begin to articulate what it is like to hear those words. It changes the world, as you know it. There are a few days where you are in a complete state of shock, trying to wrap your head around the knowledge, most of the time in disbelief. Then you have to move forward somehow. I did not know how I was going to make that happen, and nearly made a decision where there would be no moving forward.

But I did move forward and have now come to this four-year mark after diagnosis.

But have I truly moved forward?

My sister may not realize it, but she kicked me in the ass today.  We all need it from time-to-time.  She held a verbal mirror in front of me, and I had to take a hard look at myself.

“Yes sis”…she knew what day it was.

“I don’t focus on that though.” 

And then she knocked me over.

“You showed me to let go and never look back, to keep moving forward because that is where our future resides…You taught me to never fear the moment…”

At that moment, all I could think of is, “I did?” 

Inside, I felt like a fraud.

Presenting the image of having it all together…

…and asking others to see beyond their own challenges is certainly much easier than going through the pain of moving forward.  Even if others do not know it, because I can talk a good game, I know it. And the couple of people whom I let in to see the pain, and fear, also know it.

Thankfully, they will call me on it, when I need it. They do it with love, but just as directly and compassionately as I do it with my clients and students…and with them.

Yes, today is an anniversary. It has been four years since I hear some bad news that changed my life. The events leading up to it were painful, scary, and confusing. The months following were challenging on many levels, including my choice to stand up to a doctor that I did not believe had my best interest at heart.

But, I must let go of the internal hold these dates have on me, because I am holding on to the fear, anger, and pain of those days, weeks and months from four years ago. It has been insidious; so much so that I did not realize it.

I am alive. I live with neuroendocrine tumors. I have had surgeries, and more CT scans, MRIs, monthly injections, and blood work than I can count.

BUT…I am ALIVE…and my future lies in moving forward.

In the words of my sister:  

“…it’s easier to preach what we know to be true…, but difficult to apply to our own lives…Logic and emotion collide and we…are paralyzed to apply it…We feel empowered (however) to help others…”

I do not know when I ever taught her any of the lessons she taught me today. But she does understand me, and we are very much alike.

Today, I move forward into my fifth year after diagnosis. The future. And I am eternally grateful for those who have stood by me, understood me, and loved me every step along the way.

As far as the “funk”…I think I will take a lesson from (ToP), and “funk the dumb stuff” from now on…

© Coral Levang 2016

 

 

Time Runs Away with Me

00clocktimeFliesI am never quite sure to where time runs off. It has been nearly six weeks from my last post, which was not my own post, but a share of another’s blog.  I really need to become better at consistency wherever I write, and in whatever I do.

I also realized that I failed to share the outcome surrounding the issue I shared two months ago in When Things Become Too Familiar.  

I did, indeed, go to University of WA Medical Center for an MRI, and blood work. It was three months earlier than what the year out was to be.  All the results came back and there were no surprises.  Everything was relatively stable (again) after the nine months.

The liver lesions show virtually no growth and there a no new detectable lesions or new tumors in my system. My blood work came back as normal, though the levels in the Serum Serotonin and the Chromogranin A are elevated, as usual in someone living with carcinoid cancer/neuro-endocrine tumors.

So, the question becomes, “Why?” The attack that I had could be attributed to lesions in my intestine, healed from when they did the resection. Or it could be due to the one thing that I noticed on the report that I have never seen or paid attention to before:  Gallstones.

I have had no other issues since my June issue, which concerned me, other than the “normal” pains and symptoms that I deal with living with this condition.

Sometimes, I get a bit frustrated, angry, depressed, and whiny about them, but I try to get through those moments as quickly as I can. I do not want to ever beseen as someone who cannot deal with whatever life throws my way.

Thankfully, I have a couple of trusted friends with whom I can be honest, and let them see the overly-human person.  Although it is not pleasant for them, I am grateful that they accept me, love me, and (even) reach out to me in those moments.

With August right around the corner, my goal is to write daily.  To all who read me, thank you for your continued support.

 

When Things Become Too Familiar

carcinoidAbout four years ago, I began to have some episodes that I allowed to pass without consulting a physician.  I was able to explain them away.

In April 2012, however, I found myself in the emergency room (ER) with an intestinal blockage, and thus began my journey with a new knowledge of what was going on with me.  I had been diagnosed with Stage 4 Carcinoid Cancer/Neuroendocrine Tumors (NETs).

The reality of the matter is that I had been living with this for years, probably several decades. The difference was that now I knew about it.

Knowledge can be a wonderful thing.  It can also be something that we want to ignore, because what we know is not always pleasant.  Then we make a choice to turn away, or face it head on.  It is not an ideal that I always care to visit.

This weekend, I had a situation that was way too familiar to me. In fact, it is the second of episodes I have had in the past few months, with similar symptoms to what I experienced several years ago.

As much as I would like to “ignore it and hope it goes away,” I chose to write to my specialist and explain the situation.  I suggested that we not wait until September for my next CT scan and follow-up appointment, which would have been a year since my last. I am awaiting a response.

I do not relish the idea of the possibility of having to go through more surgery, but I recognize that it may be necessary. I also realize that I have to face my life head-on, though sticking my head in the sand would be easier in some ways.  Unfortunately, by ignoring it, I cannot guarantee that it will go away.

I have to keep reminding myself that I am LIVING with this disease.  That will require me to be ever-vigilant in paying attention to what my body tells me, and not letting my mind lie to me.  That is one familiar behavior I do not need to repeat.

Three Years Ago Sadness But Today a Different Story

chinese-675117_640Today, I give you short and sweet.

It was Carl Jung who said, “Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better to take things as they come along with patience and equanimity.” 

Three years ago was a very bleak time for me and for those who were closest to me. Much has transpired over these three years.

Yet, in the midst of the darkness came a flicker of light, which was not able to be extinguished. And for that, and the wonderful people in my life, I am truly grateful.

I invite you to read these other two posts to hear more of the story: Three Years and Continuing to Make Memories and Suicide: The Night I Took My Life.

“We all have a personal pool of quicksand inside us where we begin to sink and need friends and family to find us and remind us of all the good that has been and will be.” ~~Regina Brett

I Learned How to LIVE by Facing a Big Demon

Zebra 1I have to admit that I did not feel much like living, when I heard the diagnosis.

“Carcinoid cancer. Stage IV. Six months to a year, two if you’re lucky.”

Stunned, I started to prepare myself, and my family and friends, for the worst. We were to face the biggest demon any of us had ever known.

I thought I knew what to expect from death. I watched several people succumb to cancer and other health issues over several years before. It was a taste of what was yet to come. I felt that I had feasted at others’ tables with Lucifer himself.

Three years have passed.  Thankfully, I am not in the same place that I was during those first few weeks after my diagnosis. But, I have to admit, as I come up on the anniversaries, I get a bit freaked out. If nothing else, it is unsettling. I do not do it in doomsday fashion, as I refuse to give it more energy than is absolutely necessary. But I can find myself going down a rabbit hole and reliving those weeks leading up to hearing the actual diagnosis, and the events that took place afterward.

That serves no one, especially me.

When we are facing challenges that seem to consume us, it is unrealistic to think that we can just ignore them away by refusing to address them. Whether health concerns, issues at work, personal tests, divorce, insurmountable bills, or any other problems that seem to be dropped in front of us, we MUST be willing to look at it realistically.

Refusing to see things, as they are, is just as dangerous as jumping into the pit of negativity. It equates so often to sticking our heads in the sand of denial.

Hope…but prepare!

Every day of my life, I recognize the need to be prepared. I learned early on in life to “hope for the best; be prepared for the worst.” These skills have served me well, encountering many different scenarios throughout life.

Some people may certainly see this as giving focus to the bad.  I see it, however, as being realistic enough to understand what may on the other side and having a direction. Of course, one must be able to embrace balance.

Standing up to take on the demons we encounter is not easy, but it is necessary.  If we are not willing to do so, we allow our fears to lie to us, and down the rabbit hole of doom and gloom we go.

Facing the demons

I wish I could forget that carcinoid cancer ever existed in my life. I wish there was some potion for me to swallow to make it go away. I wish that a fairy godmother could wave her wand and life was magically transformed into something that what it is at any given moment. This goes for more than only a cancer diagnosis.

The biggest demons any of us face are not cancer or other illnesses. They are not a bad boss, an unrelenting ex-spouse, or rebellious teenager. They are not the circumstances that we encounter that are beyond our control.

The monster that we face each day is the person we see in the mirror. Our demons might very well be how we look at each situation. How we react to others and the challenges we face, given our beliefs, values, and habits, do not always serve us well.

I try each day to eliminate my knee-jerk reactions to things I face.  I am not always very effective.  In fact, sometimes I fail miserably.When I am in reaction mode, I give up my power to that (and others) which is making life inconvenient, annoying, or even painful.

Looking to the future

I am grateful for life itself, and for the last three years I have learned things that came from being diagnosed with cancer. It represents every single challenge in life that I have faced and thought I would never survive. I celebrate the people who have come in (and out) of my life.

I look forward to many more years to come, armed with more knowledge than I (or the general surgeon) had three years ago this afternoon.  And I live my life, in spite of the people and the issues that try to make it difficult for me, or when they decide they want me to give up.

I have said many times over the last several years, “We are all in the war together, and the war is LIFE.  It is our battles which are different, and each make us unique (though we can relate).”

I am not dying from cancer. I am LIVING WITH cancer.   

What are YOU living with?

* * * * * * * * * * * * *

10711038_813112818731600_2929378673711612179_nFor more information on Carcinoid Cancer/Neuroendocrine Tumors (NETs) visit:

NET Awareness Day

TODAY, November 10, is NET /Carcinoid Cancer Awareness Day.

Most people simply do not know much or have never heard of carcinoid cancer, including many medical professionals. There are some under-informed professionals who do not give accurate information.

It is important for us all to arm ourselves with knowledge and share that knowledge. We share responsibility as human beings to help one another.

So, I ask you to bookmark some websites, and come back to read them.  Share them with others. And don’t let it just be one day a year.

We need to be as fervent about getting the word out about this cancer, as we have been about breast cancer. The zebra ribbon deserves as much recognition as the pink ribbon.

It has been said that carcinoid cancer/neuroendocrine tumors are “rare.”  I disagree with this, as I (and others I now know in the medical community) believe they are “rarely diagnosed.”  Because they are regularly misdiagnosed or we are not taken seriously in our symptoms, most of us are at the stage IV level by the time we have even been introduced to the words, “carcinoid cancer.”

Please begin to wear a pin, a wristband, or a zebra ribbon.  Please go to these websites and learn all you can, download and print and then pass out fact sheets.  Please start by sharing the stories of the “zebras” that you know.  You likely know more than you think you do.  But you now know me.

We need you to help us.  Just like you have done with many other recognized ribbons for a variety of causes.

We zebras cannot do it alone, and this zebra thanks you for your support and help in getting this information out there.

http://carcinoid.org
http://carcinoidawareness.org
http://caringforcarcinoid.or
http://walkingwithjane.org
http://walkingwithjane.org

 

 

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