Posted by: oatmealprotocol | November 27, 2015

Trepidations: The Other Side

Dedicated to my Children

I have always been a late bloomer. Life has come as it may, and I have had a wonderful life, but it is always different than what we think it will be. This is true of the ebb and flow of life at the end of our days, and “the other side.”

I am not quite going out with a bang, although I think I want to, since I am praying for grace anyway. I find now that there are things I am afraid of, that; shadowed by death for so long, I didn’t think would bother me. I think it is a reincarnation of the boogie man. I don’t fear death, and I don’t think I fear the other side-for me, anyway.

I thought I might not go out at all, after all, I have survived pancreatic cancer for 11 years until it lifted its ugly head again, like Beowulf’s  Grendel, plundering at all cost to keep the beast alive. Grendel is a scary monster. Like Freddy Krueger and the Pit and the Pendulum Vincent. I never thought I would be afraid of death as I am of these imaginary creatures. And it is not death I fear, but life without me–for those I leave on the other side.

The biggest fear is that of the unknown, not for me, but for those I leave behind. I don’t want to leave anybody, especially in a way  that they may view me less than they viewed me in life. I think of my family and my many friends. I especially think about my children, although they are such wonderful people I know they will have extraordinary lives, always.

Ian, Tana, Kayla, and Cameron–you are my all, and always have been; you always will be. I hope this brings you solace. How much you are truly loved on all sides. Always.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I do have amazing children; and I have had an amazing life because of them. I am finding  peace because of them. That makes some of the news I have received lately easy to handle, sometimes bittersweet, and sometime a little disheartening. I am still praying for grace. It is hardest for those that I will leave behind.  My heart breaks.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am still with cancer in my lungs and bones, but we have decided to stop all chemos so that my last few months may be good, as far as quality of life goes. That’s a little scary, too. Not knowing what the next few months will hold. When the other side appears.

 

I plan to go to Columbus for a few days in December and spend Christmas in Michigan(Lansing and Grand Rapids).

As far as the other side, I am still waiting with tempered hopes and all my heart. Cherishing every moment I have.

 

I love you all, being kt.

 

Posted by: oatmealprotocol | November 3, 2015

A Grasshopper’s Proclivity to the Ants

The_Ant_and_the_Grasshopper_-_Project_Gutenberg_etext_19994.jpg ‎(380 × 366 pixels, file size: 51 KB, MIME type: image/jpeg)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I have always loved Aesop’s Fables. The fox and the grapes. The man and the wind and the sun. You know the stories.
Until very recently I always thought I was the grasshopper, playing around in the summer, dancing around until fall, and then needing help from the ants to get through winter. But those that have known me, or have known me these past twelve years with pancreatic cancer, have known that I am definitely the ants working/living away. I have worked my entire illness. I thought I had a great life, working hard through cancer, enjoying what life gave me, raising my kids and living with cancer…working hard, playing hard.
Things are changing-quickly. I cannot work at the pace that I have been working with active cancer. Change is coming so very hard for me. I am not well (The cancer is in my bones and could be  spreading) and I am having a hard time working full time. I guess the grasshopper is having the last laugh!
I don’t have any regrets, I just didn’t think it would happen like this so quickly for me. I have a week more off from work for resting and then I need to make some decisions about my next steps. Maybe it’s time for the ants to pay the piper!
Being KT

The_Ant_and_the_Grasshopper_-_Project_Gutenberg_etext_19994

I have quite a few blog posts about living in the moment, making everything count, not wasting a second, cherishing limbo as an island paradise, embracing my cancer, and…so  it goes.

I am still fighting like hell–working full time at home, living on my own (so far away from family, friends, and kids), and according to my doctors and all who know me, I am doing a really good job having cancer, exhaustion and all. (Well, there was this one person who chastised me for trying to live my life besides my cancer, but I am not counting that.)

I have done this–living with pancreatic cancer—for eleven years. I think I know something about living in the now, hoping for tomorrow, praying for grace, making it count. And yet, at times, I worry that I am missing something, wasting time,  that there needs to be a more…

Sometimes it seems that living in the moment, making ‘it’ count–that all powerful NOW (pay no attention to that (wo)man behind the curtain)…is a matter of making it through the day, living a life that is exceptional, but ordinary, not knowing how many  more exceptionally ordinary days I have left.

I do try for exceptionally ordinary every day, savoring everything, but sometimes, I do get caught up in the daily business of living as if I have an infinite (there are several kinds of infinity) number of days.

~~~~~

I spend quite a bit of my time cooking eggs. I like soft boiled eggs the best, and even have several egg cups that I like to use. (Not the antique man’s face cup I had as a child, but egg cups none the less.)  The trick is to whack the shell with a sharp curved knife hard enough to take the top off without getting shell inside the egg. Holding back but giving it your best.

I collect salt wells–they sit like sentries on my stove top–I salt my eggs from these, always throwing a pinch of salt over my left shoulder–for luck. (That is funny when you think about it.)

~~~~~

I am afraid of shark attacks. It is much more of a reality now that I live in North Carolina and there have been a deluge of attacks on the coast. (My kids like to play this game that my Whipple scar is actually from a shark bite…you cannot deny some kind of symbolic catch 22.)

I love the ocean but I wonder, next time I visit the coast, if I might not swim in the ocean. Or should I? What on Earth do I have to fear?  Is that sequestering the moment?    Holding Back? Not giving it my best? Living for a different version of now?

And now I have written another blog post about living in the moment, making everything count, not wasting a second, cherishing limbo as an island paradise, embracing my cancer, whacking the shell of each day hard enough to take the top off, diving in the ocean with sharks…

and so  it goes, being Kt.

Posted by: oatmealprotocol | May 17, 2015

The single most thing–I am the bow

It used to be using tanning beds (well, it still is…) or eating broccoli, or guzzling pots of coffee, or getting divorced, but now being a single mom causes cancer.
Five outa five ain’t bad.

B.C. (before cancer), I tried really hard to live a life so I wouldn’t get sick…I ran, I tried to eat right, I lived life…stressfully, but fully.

Life causes cancer folks…

And the news that woman over 50 who were/are single moms more than 8 years are more prone to health problems? Wrong!

Being a single mom is the best thing I have ever done, and why I believe I am still here, 11 years after a pancreatic cancer diagnosis.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

People ask me what I have done, or what makes me different than others who have not survived. Why have you lived through this disease for so long when others have not? (Some in awe and some blinded by grief wonder about a magic bullet…)

I say that I am still here because I have red hair, (or red-headed proclivities); that I am stubborn, tenacious, ornery; that I put quarters in other peoples’ parking meters and karma works; or that I am a single-mom and have work to do. I do have a kick-ass attitude, but I think I had that before the cancer.

I know, that I would not be here if I wasn’t a mom-a single mom-if I didn’t have my kids (Ian, Tana, Kayla, Cameron), if I didn’t have their strength to keep me going.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kahlil Gibran’s The Prophet(1923)
“On Children”

“…For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.

For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.

The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.

Let your bending in the archer’s hand be for gladness;

For even as He loves the arrow that flies,
so He loves also the bow that is stable.”

http://www.katsandogz.com/onchildren.html

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am the bow.

As a single mom, my arrows flew strong, and swift, and far.

I cannot comment on who the archer might be–Mother Earth,
the Goddess, God, the Universe???

I can comment on the single most fact that I am still here because I am the single mom, the bow, bent on my arrows’ paths…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Having kids saved my life, keeps me alive…a million times over…the one singular thing that keeps me here, eleven years out…

being KT.

 Kahlil Gibran On Children Chapter IV The Prophet 1923

Kahlil Gibran On Children Chapter IV The Prophet 1923

Posted by: oatmealprotocol | March 15, 2015

Fairy Gardens and Pixie Dust

"Fairy Garden" by Karen Thompson, January 2015

“Fairy Garden” by Karen Thompson, January 2015

The fear of banshees was instilled in me at a very early age. The joy of pixies, angels, and other faeries (the fae), came first. I am sure that was my grandfather’s intent; show the power of joy and happiness of the wee folk through yarns of fairy rings and pixie magic to offset the destruction and terror of the evil queen…

“…Oh, then, I see Queen Mab hath been with you…”

It has always been my practice that a conjuring (even in the mind) of winged creatures (the fae kind) can supersede the wicked banshees and terror-inducing witches hovering in the shadows just by being there…

…Not always a realistic viewpoint, but it works for this hopeless romantic.

It has always been planted in my subconscious, or rooted in my personal vernacular, (okay, Grandpa Tom always said so) that I am a changeling. It makes perfect sense that a fairy child was placed in little Karen Kay’s basket as a babe and the real K was stolen for the fairy kingdom’s whim…

…You think I would have the grace of a fairy then, but no such luck—I am just happy about the promise of wings.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I didn’t dive into the realm of keeping fairy gardens until recently—definitely AC (after cancer) and definitely more intensely so since my latest pancreatic-cancer-moving-to-the-lungs-and-adrenal glands-diagnosis last June (read banshees).

I find solace in that fairy world in miniature, just like I found solace in my grandpa’s stories as a child….the power of joy and happiness will always trump the evil queen…

…being Kt

(changeling or not…)

Posted by: oatmealprotocol | February 1, 2015

Gathering Moss, Saving Stones

"The North Side" Photo taken by Karen Thompson January 2015 Durham, NC

“The North Side” Photo taken by Karen Thompson January 2015 Durham, NC

I am a moss gatherer, a stone saver… My parents saved stones, huge rocks, and shells, and I always thought they were for different reasons, but now, I am not so sure…

~~~~~~
My mother had a rock garden when we lived in Richmond, Michigan. It wasn’t a hobby, but an institution. I remember the summer that the county was widening Ridge Road. The road was stripped down to dirt, and large boulders were moved to the rough edges to make way for a turn lane. Mom had an idea! She somehow talked the road crew with the front loader to move three boulders three blocks south to our backyard so the huge boulders could be the corner stones, a monument, of the kidney-shaped rock garden she was building. (I think chicken salad sandwiches and lemonade were involved.)
~~~~~~

My father had a rock polisher, for the little stones, and always pointed out pieces of sea glass we would find at Metropolitan Beach (Detroit area) in the summers. Not sea glass really, but coke bottles washed up on the lake shore–they seemed like exotic treasures when my dad would point them out, drop them in my hands, and tell me that time polished the rough edges…

~~~~~~

I didn’t always collect moss, but I have recently. I think it might be a combination of living in North Carolina and having my cancer come back. I line my pockets with shaggy green swatches of moss during nature walks, I contemplate buying spray moss-in-a-can for my bird sanctuary area outside my back porch slider, and I keep a moist baggie in the car for any random and serendipitous moss sightings. My fairy garden has a plush carpet verde next to the bridge troll. (More about my fairy garden obsession later.)
~~~~~
Silly, gathering moss with a terminal illness when the goal is to keep things neat and tidy so those left behind don’t have a mess to clean up…

~~~~~

I think it is a promise and a dare to myself, a life hobby, gathering moss, saving stones, as if to break the spell or the curse of that other saying, “a rolling stone gathers” none…

~~~~~

I am not sure what my hoarding lichen means in reference to my chemo, or right now, my recent chemo vacation (I am on sabbatical from Gemzar and Abraxine for two months).

~~~~~

I gather moss like I collect tumor marker scores…lining my pockets with a distant and lush promise of what I want, but may not have…

and still I marvel at the loss of rough edges of time polishing and monuments…

saving stones and gathering moss…

…being Kt.

Posted by: oatmealprotocol | December 13, 2014

Being KT: A Day in the Life (Day 30)

Every day in the month of November, in honor of Pancreatic Cancer Awareness Month, I will post a daily blog update, twitter feed, and/or Facebook post. I say that I do not like to ‘cancer out’, or state what I deal with on any given day in regards to my little recurring bout with pancreatic cancer, but as a ten-year survivor, I think it is my obligation to spread the word, spread awareness, and wage hope.

(KT note: It is mid-December and I am finishing my November A Day in the Life postings! Thank you for your patience!)

November Post Day 30 Pancreatic Cancer Awareness Month (11/30/2014)

I was on a roll, the last days of November, and I had been doing so well, posting a blog entry daily on FB to bring attention and awareness to this disease during Pancreatic Cancer Awareness Month 2014. (I hate to give credence and more power to pancreatic cancer by giving it an epithet such as “this terrible disease”, “this beast”, “this deadly curse”…it is just a disease…I have the power over this–or feign that I do.)

The last day of November came, and I had several things to write about, I knew I would meet my goal of writing, or posting, every day in November, and it was the last day, but deadlines loomed on the horizon for work—many people may not realize that I work full time from home while I am in chemo—and I had many projects (besides a killer round of chemo) that needed, or demanded rather, my attention.

(The cancer community surely doesn’t take into consideration cancer patients that work since every program, spa day, support group, or yoga class for cancer patients are scheduled during the working day.)

It was December 2nd, the online day of giving to your favorite charity, Giving Tuesday , and I thought that would be a great idea for my final November blog posting, “The Art of Giving in Limbo” or some such thing (especially relevant as we are fast approaching a Christmas season that I didn’t think I would see earlier this year).

Who would I give to? What charity would reap the benefits of my worth? Of course, the Pancreatic Cancer Action Network was one of the first to enter my mind, or another pancreatic cancer charity—after all, we were just getting over the month of awareness for pc. And then I thought of the purple I wore every day of the month in November to help spread awareness…

…I was defining myself by my disease.

It is a hazard of illness, I think, and one that Dr. B and I have talked about very early on—that cancer patients, (especially starting treatment in a new facility, in a new city, in a new state, with a new team), are identified with their disease, symptoms, and history, and not as an individual.

(And we all know I am one of those…)

It is kind of hard not to do sometimes, when you see a beautiful bald warrior—you know exactly that they have cancer (so maybe we assume that we know all there is to know about them)…yes, they are tough, but they are sick…don’t get too close, not that you might catch something, but you might get to like them and why open your heart to such hurt later?…I think it is something all cancer patients have experienced, it looks like pity…that is the last thing I (or anyone) wants to be identified as—pitiable.

(Sorry folks, this is a reality of living with a terminal illness—we patients are sometimes identified with the land of the not living-long realm. We are viewed by some, especially when we do not look our best, with pity. There are some people that may shy away…that is why my motto is “always reach out/be kind!”)

For those who know and care for me, I know you do not think this, that you like to be close, and I haven’t seen the look of pity from someone I know in a long, long time. I truly thank you for your care, your love, and mostly for your ability to see me as…

…being KT.

Posted by: oatmealprotocol | December 1, 2014

Being KT: A Day in the Life (Day 29)

Every day in the month of November, in honor of Pancreatic Cancer Awareness Month, I will post a daily blog update, twitter feed, and/or Facebook post. I say that I do not like to ‘cancer out’, or state what I deal with on any given day in regards to my little recurring bout with pancreatic cancer, but as a ten-year survivor, I think it is my obligation to spread the word, spread awareness, and wage hope.

November Post Day 29 Pancreatic Cancer Awareness Month (11/29/2014)

Over the course of my ten years with this terrible and terminal illness, there is/has been a happy but bittersweet occurrence as I make this journey.

There are good things about cancer—like the wonderful people that I have met along the way, the lives that I have nurtured (hopefully), and the people who I have met who have inspired me and have made my life meaningful, who have nurtured me in body and soul.

I learned along time ago, a great mandate from my mentor GR, that it is better to reach out when times are tough than to hunker down…I will always be the reacher…

Friends, family, and strangers all have enriched my life…but I have the privilege and the sad/happy friendships of many, many pancreatic cancer survivors that have created cherished memories and are now part of my eternal soul gardens—most have passed on, passed me by—I have survived where so many have not.

I lose a lot of friends in my life.

It makes me a truly better person, I know—for having met you my fellow warriors.

Since my diagnosis in 2004, when famous people have been diagnosed with pancreatic cancer, or have passed from pancreatic cancer, (i.e. Pavarotti-2006, Randy Pausch-2008, Patrick Swayze-2009, Ruth Gindsburg-2009 and still fighting, Sally Ride-2012, Bonnie Franklin-2013), I get very upset-more so than most outside one’s family.

I used to feel guilty when someone has passed from pancreatic cancer, and am always humbled and a little shy about giving condolences—I am here, and others have not made it.

I don’t feel guilt now, but I still have a great sense of loss; I know this is an inevitable outcome of being friends in our special club.

On November 29, we lost another true warrior, K__ F___—an intense family man, a true advocate and fighter, and a very genuine and kind person. My heart mourns with his family.

I have lost another friend, but I am so much better for the knowing—a good thing about a bad cancer…

…being kt

Posted by: oatmealprotocol | November 30, 2014

Being KT: A Day in the Life (Day 28)

Every day in the month of November, in honor of Pancreatic Cancer Awareness Month, I will post a daily blog update, twitter feed, and/or Facebook post. I say that I do not like to ‘cancer out’, or state what I deal with on any given day in regards to my little recurring bout with pancreatic cancer, but as a ten-year survivor, I think it is my obligation to spread the word, spread awareness, and wage hope.

November Post Day 28 Pancreatic Cancer Awareness Month (11/28/2014)

A lot of people know that my blog is called the Oatmeal Protocol, and some may know that there isn’t an oatmeal protocol, or for me there hasn’t been one for my experiences, but most may not know the story of the radioactive fried egg sandwiches and the need to keep down oatmeal in its stead.

One of the nuclear medicine tests I have needed in my ten-plus years with less than a full pancreas (and sans several other organs including not-quite-a-full-stomach) is a slow-to-empty study. There’s a radioactive isotope that is ingested and tracked through your system on the way to empty. The isotope is slimy, and doesn’t hold on to much food…an egg is usually used…and usually fried.

For any of you that have had lunch with me lately, eating a radioactive fried egg sandwich probably doesn’t (well definitely doesn’t) sit well with me or has high prospects to stay with me, for any length of time—or for enough time for isotopes to find a path through my digestive system—a hazmat worthy disaster— not keeping down radioactive isotopes in the form of a cold, season-less, bad sandwich with radioactive bonus points.

After the fourth time of no success with the radioactive fried egg sandwiches (sounds like a band), I called the nurse in charge of the test and asked about using something else besides eggs, such as oatmeal (Other places have had success with oatmeal, such as John Hopkins). She said yes to oatmeal and then called on my way to the testing center to say, “Sorry, you will have scrambled eggs, we have no oatmeal protocol…”

Radioactive scrambled eggs with toast and jam beats a fried eggs sandwich ala isotopes any day…

And about the protocol…there really isn’t a protocol for surviving cancer, or battling cancer in my book, except what works for me, my mantra for all things life-related/radioactive related (because life is that folks)—

Create an oatmeal regimen of
Working hard,
playing harder,
dreaming big,
being kind,
laughing hugely, and often,
loving with infinite possibilities,
and waging life…

…being kt.

Posted by: oatmealprotocol | November 30, 2014

Being KT: A Day in the Life (Days 26 and 27)

Every day in the month of November, in honor of Pancreatic Cancer Awareness Month, I will post a daily blog update, twitter feed, and/or Facebook post. I say that I do not like to ‘cancer out’, or state what I deal with on any given day in regards to my little recurring bout with pancreatic cancer, but as a ten-year survivor, I think it is my obligation to spread the word, spread awareness, and wage hope.

November Post Day 26 Pancreatic Cancer Awareness Month (11/26/2014)

Limbo Rock

If we did a word count of my posts, you will definitely see time repeated over and over (see an early post–Soul-torching the Time Bandit: September 2013), but you may see the word limbo. (See posts Postcards from Limbo: June 2010, Icharus Island: June 2010, and Perpetuating Limbo (sans the strings): January 2013), but every once in a while, certain important words need repeating, for me anyway. Or more true to my metaphorical train of thought, they just bubble over into daily thought.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am a child of the 60’s. (That probably has a high word count throughout my blog, too.) For some reason recently, I thought of the song by Chubbie Checker called Limbo Rock, but more importantly, I thought about the limbo pole and doing the limbo dance.

And for those that are following along, or have connected the dots; yes, I am dancing in limbo daily.

You didn’t need the music to do the limbo, but you did need a limbo pole (read tall, hallow, dried-out bamboo stalk). We limboed quite often at backyard parties and neighborhood street fairs, but mostly, we limbo shuffled in the basement. The idea is to put your arms out, bends your knees and crab-walk without touching the floor with your hands or the pole with your body, traversing under a horizontally-extended bamboo pole.

Think of pole-vaulting in reverse. You “win” If you make it through and your prize is to get to do it again with the pole lowered a notch. This is fun on a beach or on the grass, but sometimes, on a cement floor, noggins bump concrete, a lot. (Oh, so that’s my problems!)

I don’t think doing the limbo caused cancer, but having cancer causes the limbo shuffle, daily.

And I win every day as I get to go again on the limbo shuffle…

…being kt.

November Post Day 27 Pancreatic Cancer Awareness Month (11/27/2014)

Thanksgiving eve, before the morning on Thursday, I thought I had made a mistake. My first Thanksgiving without my kids, and maybe I should have gone North. (I am saving my energy for a trip to Michigan for Christmas!)

The kids were fine, and all had plans, and I had lavished them with Thanksgiving treats via our postal service, but I thought, driving to my friend D’s place (and her friend J’s place on Carolina Beach) on the North Carolina coast that I was going to miss out on some magic holiday.

And then I woke up Thanksgiving morning to the sound of ocean waves, a warm sun, good friends who care (and a hellacious ham and cheese omelet, thank you JL), and sounding dolphins out the plate glass window.

Dolphins on Thanksgiving!
All is right with the holiday magic (every day) and I am oh so grateful for it all…

…being kt.

Older Posts »

Categories

%d bloggers like this: