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

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Relay for Life

Tonight I am walking in my County Relay for Life event sponsored by the American Cancer Society. It is a fundraising event, and this is the first time I will be involved with this relay where I live.

I got into signing up rather late in this game, so I have not been doing any fundraising. I would like to give everybody the opportunity to make a donation to this event in honor of the people you know whose lives have been touched by cancer. If you are so inclined, I hope that you will follow the link and make a donation honoring those you love. I would also ask that you get this word out and pass this link along so that we can make a difference!

We really need to find a cure!

Thank you for your support!

Funk(ing) the Dumb Stuff on an Anniversary

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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.

 

8-year-old Boy Goes Beyond to Help Young Cancer Patients

AUTHOR’S NOTE:  I ask my readers for your help:  Please reblog this post or share my URL  to get the word out.  People need to hear this story of this remarkable little boy.Thank you.

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Christian McPhilamy is my hero.

How many of you know a boy who would go through ridicule of being called a girl for two years, just so he could help other children out?

That is exactly what Christian McPhilamy did when he grew his hair out for over two years. He saw a a commercial for St. Jude Children’s Hospital, and saw other young kids like him without hair while going through cancer treatment.

Now, at 8-years-old, Christian has donated his hair to an organization, which supplies wigs to those in treatment.

In a world where so many begrudge a call for donations to help others in need, there are people who willing to step up and show what true kindness and love really is.

Christian McPhilamy is one of those people. And this was a random act of kindness that I will never forget happened.

To read his story and see Christian’s pictures, click here for the story on MSN.  

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.

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?

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

April 16: Many things to celebrate

word-cloud-680706_640Three years ago today I was in an emergency room.  It began a whirlwind of events over the next 30 days that led to a diagnosis that has drastically changed my life.

April 16th is also the birthday of RGD, someone I have known since 1981. We, too, have had our own whirlwind of events in the 34 years we have known each other. Thankfully, we have remained friends over the years.  He was in the ER with me three years ago, and has been of great support since.

Today, I had an overdue diagnostic mammogram. It had been two-and-a-half years. And, as I waited for the results, I began to allow some fear to creep into my brain. Would this be another diagnosis (my third)?

I found myself planning in those few short minutes.  Planning for the “what if.”   I jump into the until it happens mode.  It is difficult for me to let that go and not concern myself about it unless it happens. It is a subtle difference that makes all the difference in the world.

The good news is that things are fine and I am cleared for another year for breast health. Another small victory to celebrate.

There will be a birthday celebration for RGD, but it will wait for a few days. And there are a few other things that need to be celebrated, like LIFE itself.

As I grow older, it becomes more and more apparent that we need to learn to appreciate each moment, as it comes, instead of our once-a-year habits.

© 2015 Coral Levang

 

Intuitive Painting Is Much More than Art

Getting through the pain and ugliness that comes with life so that we can get to a point where we might come to understand and feel peace is not an easy journey.  Far too often, we stay stuck in old patterns of behavior or struggle with new ways of thinking.

If we continue to challenge ourselves, we can find moments of peacefulness, but only if we allow ourselves an opportunity to trust. Simply trust.

Trust others. Trust ourselves.

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It requires such vulnerability and we often do not know how we can ever open ourselves up to others.  Sometimes, we do not see it coming and we are in the throws of it, before we know it.

We allow someone to see the crack in our armor.  Before we know it, they ask a question that touches the open wound and it begins to seep.

And then we bleed.

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Oh, so carefully, that someone begins to dress our wounds, offers us a tissue or a shoulder as we cry, and allows us to be human in a space where we are safe to do so.  Where we feel safe to be ourselves.

It is in these moments that we begin to experience love, connection, and peace. But we must be willing to let go of part of the pain and anguish that life has not just offered us, but dumped on us.

And  we start anew.

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We focus on something different.  Something that might bring us some joy. We see the possibilities of what can be by letting go, even for just a moment.

Then we share our laughter, the gifts of new-found friendship and a bit more peace that when we begin.  And we begin to realize what it is

…to have some fun.

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If you would like to “awaken your creativity, empower your life, (and) come play,” read below!

Credits:  All photographs and artwork shared above are owned by the author, created on 11/15/2014 at an Intuitive Painting workshop at Artful Dreamers Studio in Tacoma, Washington offered by Creative Coach Nadine Hamil.

To learn more about Nadine, Artful Dreamers Studio and the Intuitive Painting workshops and other creative classes offered,  or to signup for a workshop, check out the following links:

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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