There are things to be happy about when it comes to the diagnostics involved thus far. I don’t have the protons found in the later stages of pancreatic cancer. The MRI didn’t show a mass in the pancreas. What is still on the table are the malignant cells found in the entrance of the pancreas and the bile duct. That is why he chose to address it first as pancreatic but with the next diagnostic the goal is to narrow the area. I have an in-person appointment with him to discuss the process, the goals and how we go forward. Pancreatic cancer has a much higher success rate unfortunately than bile duct cancer so everything done now matters when it comes to my longevity.

Once that is appointment is done, I want a second opinion with another doctor so I have done diligence. I respect my doctor’s conservative approach but I also know being conservative in my previous cancers wasn’t successful so I need to be my strongest advocate.  My goal is to be a centenarian so I need to cover every angle and to dot all my i’s and cross all my t’s as my favorite teacher, Mrs. Swenson always reminded us.

That poor woman, I drove her crazy because I refused to capitalize my first name. I always wrote lyn and then capitalized my last name. I felt I was just  me, the true value lies in my family name, the heritage of our existence. I’m sixty four and I still don’t capitalize my first name. I am who I am. A capital will not make me any different.

Mrs. Swenson she inspired my love of reading. She read out loud to every afternoon. Her voice carried us away into the classics every afternoon. My favorite stories were the Prince and the Pauper and the Secret Garden. She opened my mind to the possibilities of becoming a writer. Our assignment was to rewrite our favorite part. It was incredibly exciting to have that kind of power on the page as a ten year old. I was given permission to change a story that was published by an adult anyway I wanted. We talked about what we wrote and why we wanted the story to change in this way. Thinking back, we learned so much about editing,self-expression and using our imagination to improve a story. I’ve re-read both books and rewrote my own story line numerous times over the years. I should create some found poetry with each of them and see where my mind goes.

I had my nerve block done this morning for my migraines. I have crazy pressure following the injections and the only way I can reach a comfortable space is to lie down for a couple hours once I get back home.  Something about lying flat helps, at least for me it does. The afternoon disappeared on me and before I knew it was time for my writing group and then finally get to my blog entry. My emotions are still all over the place and I tire easier than I want to admit. Maybe saving my energy for when I will need it most will be beneficial but unfortunately rest seems to allude me. Another doctor question? I know sleep is highly over-rated but I do need it.

I’m much to young to feel this damn old as Garth Brooks would say.

This ol’ highway’s getting longer
Seems there ain’t no end in sight
To sleep would be best, but I just can’t afford to rest

I’m much too young to feel this damn old
All my cards are on the table with no ace left in the hole
I’m much too young to feel this damn old

If I asked you to get a fast car, so we could just go anywhere… anywhere where the letter-c can’t go, would you? That’s what I had for fifteen years until twenty six days ago. Two days of just my immediate family knowing before I shared with my close friends and began blogging my way through my feelings. The temptation to simply flee is strong but it won’t make the letter-c go away. It was so much easier as a child… running and climbing trees with reckless abandon without responsibility looming.

I remember thinking that when I was a grown-up I would do anything I want when I want.  No more curfews for me, no more doing chores and especially no more drunk adults screaming like banshees. Curfews and drunk banshees are gone. Chores I actually don’t mind. The hardest part of my childhood desire has been doing anything I wanted. I’ve explored different outlets, found joy in the majority of them and sadness in others. What I didn’t understand as a child, timing is everything. If only… I had that young dreamers energy again.

I said yesterday that Cisneros’ House on Mango Street influenced to try a vignette like hers about hair. Well,  here it is:

Turning the Pages  Vignette 1

Hair

 My father’s hair was blacker than a nighttime sky without a star, yet sometimes it shone like it had its own galaxy hidden, especially when a blue hue appeared within his curls. My mother’s auburn hair was sprayed stiff and sticky with a daily coating of shellac. It was always stiff and scratched my face, so I avoided any close contact with it. The toxic smell kept us at a distance well before social distancing became a norm.

My father’s insistence that his daughter’s hair was long and his son’s hair short determined our appearances in our family. My sister Lori’s dark thick hair waved like the ocean curling across the sand in the night. Her hair bounced lively, showing the golden streaks the sun teased out of the darkness when she walked. My brother Rick’s sandy straight hair always stood up in the back like a submarine periscope. To his dismay, our mother fussed about the way it refused to collapse and would yell at the barber. My poor brother was humiliated every time she took him. He used to beg to go inside alone.  My sister Lisa’s thin blonde hair hung down her back like streams of sunshine coming through a window. My mother would always brag to her friends how angelic she looked with her golden glow. Her ego became as inflated as a hot air balloon with all of our mother’s attention. My sister, Shirley’s hair, was almost as dark as my father’s and as thick as Lori’s but never had a strand out of place. Her hair never seemed to rebel regardless of the weather. She flaunted her perfect hair like a beauty pageant queen, but it was never enough to get our mother’s attention.  My brother, Randy’s hair, was golden ringlets always made me think of butterscotch lifesavers the way they appeared to be lighter than darker on the edges. Those ringlets became his badge as he slid into his lifestyle. At the time, I envied each of my sibling’s hair because it had personality, whereas mine hung like a limp dishrag on a towel bar. My long red hair didn’t shine or even wave.  Why did I end up with a mass of red hair that lacked fiery inspiration?  In a moment of frustration or maybe teenage resistance, I cut it off right at the elastic where it was reined in at the top of my head in a ponytail.  I felt joy losing the stringy strands. My rash act was the beginning of my rebellion to be me.   Who knew that bold act of courage would open the door to years of exploring different hairstyles and experiencing heartbreaking times with no hair from chemo  I learned my hair doesn’t define what’s inside me, it occasionally compliments it. 

Amusingly, after chemo, my hair grew back wavy and is just as unruly as my brother Rick’s.  Yay, of all them he’s the one I’m glad we look alike. ©

I chose Fast Car by Tracy Chapman today. My appointment for the MRI is today at 4:00 pm.  Part of me still has the urge to flee and the other part just wants to get there and back so it’s done. It has loomed over me long enough. I understand needing all the diagnostic information to determine the course of action…but it feels like we’re moving at a tortoise pace. That impatient child in me isn’t really gone, she just tires quicker than she wants to admit.

“You got a fast car
I want a ticket to anywhere
Maybe we make a deal
Maybe together we can get somewhere

Anyplace is better
Starting from zero got nothing to lose” ~ Tracy Chapman

Turn the page, I just want to be through this journey and on to the next one. I thought 2019 was horrific with Johnny getting killed and wanted 2020 to begin. I got what I asked for, it is a new year but not the one I hoped for either.  My thoughts wander the way they always do, as I try to focus on the positive… when and then what if… not this time. The thoughts are as fractured as the mug I didn’t mean to break.

In a feeble attempt to pick my mood up I danced last night with Bianco Brown’s the Git Up playing on U-Tube only to realize I am directionally challenged more than I once was. Damn it why can’t I remember which way is left and which is right. He’d sing go left and I’d go right. I’ve always had two left feet when it comes to dancing, don’t know why I expected last night to be any different. But at least I went from crying to laughing at myself.

I finished reading Sandra Cisneros’ The House on Mango Street. It’s a compilation of vignettes or snippets of the people in her life as a child. Through her eyes, we saw the different influences a young Latino girl faced. I enjoyed the abruptness of the book with each vignette not being more than two or three pages long. Some were even just a single page but the details described made you feel like you knew them too. I loved the one about each of her family’s hair texture. Cisneros simply titled the vignette Hairs. Her papa’s hair was like a broom, her hair was lazy, Carlo’s hair was thick, Nenny’s hair was smooth, Kiki’s hair was like fur but her Mama’s was like rosettes. Mama pinned her hair into pin curls everyday but her hair didn’t smell like roses instead it made her think of freshly baked bread. I loved each little tidbit she attached with the description. I thought about my own hair what would people say. In my childhood my hair hung straight like a limp dishrag not a wave any where. After chemo with my breast my hair returned wavy and coarser than it had been. Looking in the mirror right now I see hair that refuses to submit. Yup, that’s me.

I decided that writing 500 words was do able so I did while the house was so quiet as the sun rose on this day.

As I turned the pages this morning finishing the book, I thought about all of my own vignettes and how I could present them. I sat at looking at a new word document trying to decide what to call it the first thought came to mind was Turn the Page. Then I recalled Bob Seger did a song called Turn the Page and Metallica did an awesome cover as well. The saxophone intro is incredible.  I genuinely enjoy both versions.  Both are here in case you’re not familiar with them.

“Here I am, on the road again
There I am, up on the stage
Here I go, playin’ star again
There I go, turn the page”

The chorus fits the situation I’m in as well.  This c journey has me on a new road, I’m definitely in a stage and playing star again although I didn’t choose either place or role but I will turn the page.

Today, talking with a friend about my first cancer forty years ago. She said you have so much experience that others may find it helpful reading how you addressed your experiences . I hope by writing about my experiences with the letter-c does make a difference.

I had stage 4 cervical cancer. I was also very much pregnant with youngest daughter. The doctor recommended an abortion and followed by the radical hysterectomy.. I support every woman’s right to have an abortion. But with that said, an abortion wasn’t happening. I wanted to carry my baby to term. I saw several doctors before making the  switch to a doctor who genuinely listened to what mattered to me. We proceeded on a different course that would allow me to carry my baby while monitoring the cancer closely. It did spread to my uterus by the time my daughter was born but my life wasn’t in jeopardy because he closely monitored me. My daugher was healthy and beautiful . The radical hysterectomy took place after her birth followed by chemo. until it was determined I was cancer free.

The reason I’m bringing this up is to help individuals who have been recently diagnosed. It is so important that you are proactive in your care. Be up front with your doctor about the things that matter most to you. Cancer is intimidating but simply taking whatever course of treatment without asking for more than one opinion isn’t the best solution. Ask questions. Ask what trials are available? Be your own best advocate. “It is a waste of time not to do the most effective, useful, or important thing you can do.”― Mokokoma Mokhonoana

When I think back that if I had simply followed the first doctor’s recommendation I wouldn’t have my daughter today. Life doesn’t end with cancer you just adapt. Find the doctor who listens and adapts with you. “Life is short, and it’s up to you to make it sweet.”~ Sarah L. (Sadie) Delany

My initial conversation with my doctor this time was while you’re determining what treatment keep in mind that coffee is non-negotiable. He started with objections as doctors like to do but I nipped it right in the bud with my reply there are simple things that I cherish and look forward to daily. My coffee matters to me. He acknowledged my request and is putting a plan together. Now maybe to some people that seems ludicrous but I’m 64 years old and I’ve drank coffee since I was young. My parents gave up trying to make me drink milk and let me have coffee. I have good blood pressure and no heart issues so leave my coffee alone.

I carry a photograph of my husband, my children, my grandchildren, my friends in my mind. They are the reasons why cancer can’t and won’t destroy me.  Which brings me to the song I chose today Photograph by Ed Sheeran.

“Loving can hurt, loving can hurt sometimes
But it’s the only thing that I know
When it gets hard, you know it can get hard sometimes
It is the only thing that makes us feel alive:.”

Love can heal, loving can mend your soul

We keep these photographs of love
We made these memories for ourselves” ~Ed Sheeran

I enjoyed spending time in the garage with my friend socially distanced watching the rain come down and talking for hours. I’m grateful to have another awesome photograph to carry in my head for when I need it. Thank you Jeanne for today.

“One clear moment, one of trance
One missed step, one perfect dance
One missed shot, one and only chance
Life is all…but one fleeting glance.”~― Sanober Khan

“The world was my oyster but I used the wrong fork.”― Oscar Wilde

Is that why I’m going thru this c- crisis?

Sleep eluded me because my internal alarm clock since I got the diagnosis woke me at 2:00 am again. Cancer concerns are disruptive to all normalcy.   I admit the moon was beautiful glowing in the window across Yeatsie’s body sprawled across the carpet.  He’s my sixteen year old blue tabby. For the life of me, I have no idea why the vet says he’s a blue tabby.  I just know he’s an enjoyable member of our family.

My thoughts returned to a conversation earlier in the day about death. For me death isn’t scary because I’ve already done it once, in a crazy accident in 2007. The warm white beckoned me to go forward. It was so peaceful there I was so tempted but I wondered where Vic was and then I had the sharpest pain ever in my chest with an EMT looming above me as I woke up in an ambulance. My sternum had been broken along with three broken ribs. Needless to say breathing was brutal for a while. I never felt fear. Though I’m glad it wasn’t my time to go.

I’ve thought about death a lot since then. Death happens to us all. It’s the natural progression. What isn’t acceptable to me is suffering before we pass. I’m a firm believer in compassionate suicide. Everyone should die with dignity. It’s sad to me that as a society, we don’t bat an eye putting our pets down so they don’t suffer but insist that our loved ones or even ourselves do suffer.

What brought about the conversation was my previous round with cancer. The chemo made me so sick, I longed for death. I just wanted it to end. I told Vic, that if if cancer recurred I would never do chemo again. I lost weight, my hair, my sense of taste and smell and was exhausted all the time. Fifteen years ago they didn’t have as many options as they do now so hopefully things won’t take me back to that darkness again.

Then, I thought about all the dreams I have still. I want to be married to Vic longer than I was with my first husband. We’re coming up on our 12th wedding anniversary on Halloween, we’re only 18 years shy of that goal.  There are so many places, I hope to see with Vic. Writing that I want to publish. Grandchildren, my children, and my fur babies I adore and want to see their lives evolve.  There’s so many things I want to do with them. I want to finish my mandala afghan and maybe create a second one. I have always wanted to live to one hundred. Imagine being able to say, I’m a centenarian. “This year, the number of centenarians has increased to a new high of around 533,000 worldwide. The United Nations expect that number to rise to approximately 573,000 by 2020. The U.S. has the highest absolute number of centenarians in the world with 72,000 living in the country. Jul 26, 2019″ ~ https://www.statista.com  To me our dreams have validity, regardless of where we’re from.

“You are never too old to set another goal or to dream a new dream.”
– C.S. Lewis

I know many of you can relate to the things that matter most to me.  Life is meant to be lived.  Which brings me to my song choice for today by Etta James, Something’s Got a Hold on Me. Just thinking about my goals, my dreams and what motivates me the most definitely brings joy to my step that dang letter c can’t touch. I won’t let it.

Like Etta, I get a good feeling…. a feeling I’ve never had before.
“Let me tell you now … I got a feeling, I feel so strange…. Everything about me seems to have changed.. Step by step, I got a brand new walk… I even sound sweeter when I talk Oh, something’s got a hold on me right now, child (oh, it must be love) ”