Six years and counting…

It was six years ago last night that I was going to take my life, hearing two weeks earlier that I had only six months to a year to live.

There was a telephone call a few hours earlier asking for my volunteerism with an American Cancer Society walk in the autumn. I knew the coordinator calling, and told her about the “Carcinoid Cancer” (now NETs) diagnosis.

I ended the call with, “I’ll see you next weekend at the Relay,” and hung up. Because I was true to my word and figured she was a mandatory reporter anyway, I suspended my plan until after I saw her.

The following day, May 29, 2012 I had an appointment at Seattle Cancer Care Alliance with Dr. David Byrd, the surgeon who performed my mastectomy and node biopsy in 2007.  I learned from Dr. Byrd that there was a much different possibility than what I heard from Lt. Col. Dr. Tommy Brown two weeks earlier.

Dr. Byrd shared that there was hope for life beyond that year. A good portion of the rest of the story can be read in my “About the Author” page, and in blog posts in April through July 2012.

What I want to share here is this…

We must question what we hear.

Living in fear to the point of worry robs us of LIFE. Worry is the lie that fear tells to us.

So, it has been six YEARS thus far…and I am looking for six years times two or three. Here is to living life, one day at a time!!

 

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¡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.

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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.)

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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.

 

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:

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?

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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.