NET Cancer Awareness Day Proclaimed By Governor Jay Inslee

I received an email with an attachment today from the organizer of the Pacific Northwest Carcinoid Cancer/Neuroendocrine Support Group. It was a “Proclamation” certificate signed by Governor Jay Inslee of WA, declaring November 10, 2014 as:

NET Cancer Awareness Day.

Though I am glad that awareness for this cancer is receiving some thought, it only covers one day in 2014.

MUST we always go through this every year just to have our voices heard at a government level? How about a declaration of the day, period, Governor Inslee? Now THAT would be taking a stand that is substantive, rather than symbolic.

Some would say that I should just be grateful.

I’m sorry, but I am tired of symbolism over substance. I reject the notion that we should be “happy with what we can get.”

At what point do any of us get involved doing something because it’s the right thing to do, not simply a symbolic gesture? What does it take to get other cancers (and their ribbons) as recognized as some are now, and get money thrown at finding a cure as is done with other cancers and causes?

Zebra 1

Granted, it starts with a day. But we, who have been diagnosed with this silent killer, have been using that day of November 10th for many years,  and the many days we live with this disease, to garner support and awareness.

I know I’m being selfish, Governor Jay Inslee, because this is now about me and the others like me who live with this disease that few know much about, even many medical professionals.

And thank you, once again, for the one day this year you have given to us here in the State of Washington next month. But, I implore you…we need the same day, a week, a month…every year.

Are you wearing a zebra ribbon? Are you talking about this? When will you come to an education day/information meeting and learn about it? When will you come to talk to us, hear our stories of decades of misdiagnoses?

And whom might you know that has been diagnosed with many other ailments that present themselves with the same things that we zebras have experienced?  Which one or two or more of these friends and family will one day be diagnosed with Stage IV NETs/Carcinoid Cancer?

Yes, Stage IV.

You see, lack of awareness can lead to complacency from so many. Or some being told it is “in our heads” years before. The stories of so many of us who might have been diagnosed and treated at a Stage I level, if someone would have been aware or had listened.

“You cannot detect it if you don’t suspect it!”

More awareness is the key. We need your help.

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Sunday’s Random Thoughts–October 26th, 2014

Here it is, another Sunday.  We quickly count down to the end of another year with only nine more Sundays. By this time next week, most of us will have set our clocks back one hour.

We fool ourselves into thinking that we have one more hour to sleep, to do something that needs to be done, or to live.  We trick ourselves somehow into thinking we gain something by attempting to go back and do it again.

00clocktimeFlies

Time Flies — From MorgueFile Free photos http://mrg.bz/s0eXlp

There are no “do-overs.”

All that we have lived through cannot be undone.  There is no magic wand to make it all go away.  No magic potion to make us forget. No back button to undo what we have done. No time machine by which we can conveniently set time back to retrieve what we missed the first time-around.  We can most certainly learn from our experiences.

It is in the most painful of experiences that we learn the toughest of our lessons.

Even in the midst of our deepest anguish, we still forget that we take the time we have for granted. We get so caught up in how we have been wronged, what we must do to survive, and what is important to us in the moment, that we forget that time will still tick away minute-after-minute, until the hours and days have passed.

Learning to balance life and the time we have to do what want to do, take care of what we need to manage, and maintain the relationships with those who are important to us, can be tricky business.  The one thing that is constant is that time passes.

The older we get, time seems to pass more quickly.

We cannot gain back the hours, days, months or years of time spent on unfinished projects, sleepless nights, poor business decisions, or bad marriages. Nor can we undo what we have done or un-speak words already spoken.  What we can do is make our amends, however we deem is best and necessary, and move on.

But let us never forget that we also have a responsibility to use the time in a way that will bring about that which we say we want. We cannot shortcut for fear of losing more time.

Most importantly, may we always remember never to take for granted the clock that ticks.  Not only for ourselves but for all.

The greatest gift we can give one another is our time. 

One day we will realize that time has flown, that life ends, and there simply is no going back to let others know how much we loved them.

 

Five Things You Cannot Recover in Life

1.) A stone after it’s thrown  

2.) A word after it’s said

  3.) An occasion after it’s missed

4.) Time after it’s gone

5.) Trust after it’s lost

~Author Unknown~

 

 

 

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Sunday’s Random Thoughts–October 19th, 2014

This morning I wrote a post elsewhere about how autumn seems so bittersweet.  As beautiful as the colors of autumn can be, the time to enjoy the colors lessens with the passing of each day as we move closer to winter.

Today the wind picked up and the tree in front of my townhouse, as well as those in the neighborhood, are nearly bare.  As I wrote:

One day they are clothed in all the glorious color that is autumn. The next they are standing naked, exposed for the world to see.”

Last year’s Superbowl Champions, our Seattle Seahawks lost today’s game to the St. Louis Rams, one of the bottom three in this year’s season thus far.  Seattle’s win-loss record is now at 3-3, hardly the mark of a champion.

As I contemplate how the fall brings about change in our world, there are other changes that happen to us all.  None of us stays young forever.  Nothing seems to stand still long enough for us to get used to it.  Of course, change is not all bad.

But there are seasons in our lives when we are simply not prepared for the stark brutality reality that comes when we least expect it: The sting of the biting cold from what we thought was a blanket of warmth that would protect us forever.

Living through these seasons, we must hold on to the hope that we will weather the storms.  Time will pass and new growth will soon appear, and we will, once again, bask in all that makes us feel alive and whole.  Sometimes, it may simply take a bit longer than we want.

“And there is also a stark reminder that what (or who) we know and love (and often take for granted) deserts us for a season that may span a decade of autumns.”

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Why I Have Hated Creating Art and What I am Doing About It

“Inside you there’s an artist you don’t know about… say yes quickly, if you know, if you’ve known it from before the beginning of the universe.” ― Rumi

As far back as I can remember, I have had issues with making art of any kind.

“Stop scribbling! That’s not the ‘right’ way to color!” or “You need to color within the lines” were things that I remember hearing from about the age of four and beyond.  I heard them from family members, teachers, clergy and more.  Of course, it was not always about coloring, but also in the way that I seemed to do everything.

I do seem to remember, however, the painting books that I got at Christmastime from Santa.  A dish of water and a paintbrush magically allowed the pages to turn into colorful masterpieces that were just the right color, except that I felt limited by what others wanted it to look like.

Going to School

I never went to kindergarten, but was put into first grade a month after I turned five-years-old. No, I never got finger paint.

First grade in 1960 meant children were to learn to follow directions.  We had  pages where the pictures were numbered and there was a legend to remind us what number was for each color.  We were to finish it accordingly.

One such picture was of a little boy with building blocks. I colored his hair yellow, his face brown, one arm another color, the other arm, yet another.  Few, if any, of the corresponding numbers had been colored in correctly on the page.  I liked it, but it became clear to me that I was in trouble, when it was sent home to my mother with a note about her eldest daughter “not following the rules.” 

Mom took tracing paper and made (what seems to me now) 50 copies of this little boy building with his A-B-C blocks, and another picture of a sailboat in the water that I had also not colored correctly.  I have to say that I did not like “remedial coloring.”

Throughout my 12 years of schooling, art classes were always painful for me.  “Draw a picture” on a blank sheet of paper made no sense to me. Dropping a blob of clay on the table in front of me produced the same reaction.

“Of what?” was always my response.

I needed some sort of guidance. I just did not seem to have the same artistic blood as that of others. Most teachers did not seem to understand how to teach to those who did not fit a mold of what “good girls and boys” were supposed to be.

I never remember my pictures finding their way to bulletin boards and refrigerators, nor did my fired clay work, looking like a very misshapen lemon, become a paperweight atop a desk or displayed for the guests to see.  In fact, it made its way into the garbage bin with the rest of my things that held little value from an artistic perspective.

There is so much more to this story, but rather than write the novel now, I simply want to share that I am beginning to take this challenge on, not without some major emotional ties to this process.

Taking the Creativity Challenge

Several years ago, I started to take jewelry-making classes, but that was learning a technique and following an order for me.  I can look at a piece and reproduce it.  It is also why rosaries (though I am not Catholic) make sense to me.  There is a pattern, there is technique, and I can make it well.  It does not, however, offer much in the way of creativity.

I have also taken a couple of project classes in making small fused glass bowls at my friends’ glass studio.  It was painfully difficult getting through it, as I am my own worst critic.

On October 5th, I took the plunge by taking a painting class, “Transformational Painting,” facilitated by Nadine Hamil, owner of Artful Dreamers Studio in Tacoma, Washington.  I was with a group of approximately 10 other people.  It was stressful for me, and I fought my own version of a panic attack, not always as successfully as I would have liked.

Nadine (and the others in the class) were all welcoming and supportive.  I got through the process, which had the element of order that I can emulate, but without the “have-to” element that has been prescribed for me throughout my 59 years of life.

After the others left, Nadine (in her gentle way) asked me about what was going on with me during that process.  I shared some vulnerable moments with her, without fear of ridicule or judgement.

She asked me, “Did you at least have some fun?”

My response, “Honestly, no.  It was not fun.  But I appreciate the process and I like the resulting painting.”

I am signed up for two more of her upcoming classes in November.  I am excited but scared for the “Intuitive Painting” class mid-month, but I know that I have begun to  breakthrough.

In my next blog entry, I will share the process with photographs, and share what my thoughts were every step along the way.

For now, I share with you the photograph of the up and coming artist, Coco, with her first painting.  She (I) entitled it, “Hear Me Roar.”

Coral and First painting

“The advice I like to give young artists, or really anybody who’ll listen to me, is not to wait around for inspiration. Inspiration is for amateurs; the rest of us just show up and get to work. If you wait around for the clouds to part and a bolt of lightning to strike you in the brain, you are not going to make an awful lot of work. All the best ideas come out of the process; they come out of the work itself. Things occur to you. If you’re sitting around trying to dream up a great art idea, you can sit there a long time before anything happens. But if you just get to work, something will occur to you and something else will occur to you and something else that you reject will push you in another direction. Inspiration is absolutely unnecessary and somehow deceptive. You feel like you need this great idea before you can get down to work, and I find that’s almost never the case.”
― Chuck Close

* * * * * * * * * * *

***Author’s note:  I would also like to thank my dear friend, Ronna Detrick, for introducing me to Nadine and her work. Ronna is also the one who deemed me “a lightning bolt of instigation.”  I am truly blessed to have both Ronna and Nadine in my life.***

For more information on Ronna Detrick and the work she is doing in “transforming sacred women’s stories and inviting yours,” visit her website: http://www.ronnadetrick.com

For more information on Nadine Hamil and Artful Dreamer’s Studio, visit:  http://www.artfuldreamers.com

 

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Sunday’s Random Thoughts–October 12th, 2014

Throughout my life, I have had a keen sense of intuition about people.  I am not sure that I was born with it, but rather it developed throughout the years.  I think that it is more from observing patterns of behavior and seeing these patterns over and over again. It does not take much to understand the nature of this world and the people in it, if you step back and observe.

This is true in looking at others, but also introspectively. We must be willing to look at what we also do.

I remember a time when I would jump to react and allow others’ bad behaviors to eat at me.  I was not adept at simple, appropriate response, setting my boundaries and dealing with them.  Others and their competitive reactions seemed to ignite my own immature need to win.  Looking back over my 59 years, I see the roles I played in those reactions.

I learned some valuable lessons throughout these last four decades.  Some came with the expense of great pain.  I learned that when people come at a situation as competitors, needing to win, that no one truly wins.  Ever.

Our society seems to feed into the competition frenzy.

I think that healthy competition is perfectly acceptable and can teach someone values of good sportsmanship and working hard for a goal.

However, when we go after a “win,” at all expense,  too often one is trying to exercise dominance or incite fear. It is a form of bullying and control.  It is despicable, and we are all capable of the behavior, if we do not keep it in check.

We see it daily in the news and other media nowadays–domestic violence, terrorism, and extortion.  Reality television to illuminate the flaws of humankind. Even the video gaming that our adolescents and teens play.

Maybe I am simply at that place in life where I am tired of the bull**** games I see, and how badly I see people treat one another,  especially those who speak words of love in one breath, and rancor in the next.  It sickens me.

Behaving in one’s life in order to find a means to an end is not the way to win.  It is filled with control, threats, lies. The game does not end there and it will always produce loss.

However, when we learn how to truly love humankind and, yet, be true to ourselves, we begin to LIVE.

My hope for humankind is that more of us learn this lesson sooner than later.

 

Posted in Life in General, Self-Awareness | Tagged , , | 2 Comments

September “Zebra” Report

On Tuesday, September 2nd, I had my scheduled MRI, blood work, and follow-up appointment with my specialist, as well as my monthly sandostatin shot, before I left on Thursday.

When I shared And the Verdict Is…, I reported that the preliminary results appeared stable.  We were awaiting the radiologist’s final report and the blood work that they have to send out.   (Read here for the account.)

I have to admit that each time I have gone in since my initial diagnosis of carcinoid cancer, I seem to go through a period of trying  to prepare myself.

I wait for the “ball to drop.” 

I do my utmost to never show negativity or give it that energy, yet I never want to lose my sense of reality so that I am taken by surprise at any news.  It leaves me feeling just a bit unsettled until I can breathe again, though I handle it without most people ever knowing of my concern.  Sometimes, that effort is worthy of an Oscar nomination.

I was not too worried when I left for my visit to Tulsa to spend time with my sister, but I wanted to make sure that I received the final report, just to be aware of those realities.

I received the email reply from my specialist yesterday.  I was in the car with my sister when it came in. I broke down in tears in front of her, as if a dam had finally burst. She saw the evidence of what brews inside of me, despite my outward display.

Hi Coral, The final report on the MRI is stable or decreasing size of liver lesions. Chromogranin A is 762 slightly up from 703, Serotonin is 1650 slightly down from 1700.  So bottom line. You are good to go!  Best regards, Jim Park

 I am good to go. 

First of all, may I say that I love that my specialist and I have the kind of working (patient/doctor) relationship where we can email, and I can call him by his first name.

My next appointment will be next September.  Next year. 2015.

I am good to go.  I can let go of this for another year.   Even though I know this is something that I will live with for the rest of my life, and get monthly injections of a medication that manages the symptoms associated with this crazy cancer, I do not have to anticipate another MRI or the blood work for twelve more months.

One year.  Things will seem a bit more normal, whatever that means.  Breathe easier.

Two years ago, I feared that I would not be able to use my passport.  Today, I am figuring out when I need to have it renewed.  It expires the month before my 60th birthday, and I am making plans.  I will make absolutely certain that…

I am good to go!

 

carcinoid

 

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Thirteen Years Later…

If you were old enough to watch television on September 11th, 2001, you will never forget the events of the day that terrorists found their way to cause panic and destruction in the hearts and minds of the American people, both native-born and those who made America their home.

It is true that there were nearly 3000 people who lost their lives that day.  It is true that hatred of us was so strong in some minds that these few wanted to destroy us at what they believed was our core–government and finance.

But what we also experienced that day was an incredible resilience in the face of disaster, which included so many things that cannot be destroyed...the human spirit.

Let us always remember that we must give power to that spirit so that those who showed that spirit will be Never Forgotten.

 

 

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