Tuesday, October 1, 2013

Stage IV cancer now what? What would you do?

STAGE IV CANCER, NOW WHAT?  What would you do?  

Do I cry? Yes!  Do I continue to cry?  Absolutely.  How long do I cry? Almost every day.
I cry because the beautiful sunshiny day that I am feeling today may not be felt by me next fall or next spring.  I even love the hot sunshine of summer.

I cry because I may not get to hold my youngest child or be there when one of my twin daughters wants to call me on the phone because she wants to talk about something that is bothering her.
I cry because I may not be able to finish raising my 10 year old.

I cry because I may not get to see my son stop trying desperately to gain his independence from me because he thinks I try to control every aspect of his life.  I may not get to see him reach the realization that what he interprets as “controlling” is done out of my love for him and my concern for his well-being.
I cry because my son and I were planning to go somewhere in celebration of me making the 10 year mark cancer free after my 2009 recurrence and this will never be.  

I cry because of the medical bills.
I cry because my sweet dog, Tucker, won’t get to follow me to the bathroom to steal one of my socks when I am getting ready to shower.

I cry because I want to plant flowers and may never get to again.
I cry because I won’t get to enjoy my husband’s retirement with him.

I cry for the things I will miss, but…I won’t miss them because I won’t know I am not alive to miss them.
I cry because I feel ugly and sick. 

I cry because life will go on without me, and I don’t want it to.
I cry because I am scared of how I will feel physically in the end.

While I cry, I plan.  I plan the things that I need to get done before I go on this permanent vacation.  I call this “preparing my nest” only it is not for a new baby. 
My Will…done.  My Power Of Attorney…done.  My Health Care Power of Attorney…done.

My plan includes repairing an old quilt, making a new quilt out of old t-shirts from all the theater shows my son has been involved in over the years, organizing each piece of paper I have saved for various reasons, and organizing pictures. I plan to look at everything I have kept over the years and will decide what to do with it.  For whom, have I saved these things for I wonder? No one will care about these things as much as me.  The memories attached to these items are special only to me.  Each memory will die with me.  
My most important task to complete is one that I may not be able to finish.  The process is slow, but I work on it every day.   That is the education of my ten year old daughter.  I am homeschooling her just as I did her three older siblings.  They are all in college.  I am so proud of them.  All summer my daughter and I worked on math, social studies and writing.  Now, along with those subjects, we will dive into 5th grade grammar, punctuation, spelling, science, typing and hopefully music.  I will do this as long as I am able. 

Each day I work on accomplishing something on my list.  But, it is proving to be difficult.  My advice to everyone:  don’t put things off for too long.  It is hard to get the “must do before I die list” done when the rest of life does not stop.  I still have to take care of the daily mundane tasks of laundry, cooking, cleaning, care of my dogs and cats, grocery shopping, taking my daughter to gymnastics, and keeping up with everyone away at school. Those things just never end even when you are at the end of your life.
The t-shirt quilt I started immediately and worked on it four months.  I took it apart several times.  Tediously, I tried to make each block of material as symmetrical as possible.  I worried that someone would look at it when I am gone and see the imperfections.  But it had to be finished.

After the t-shirt quilt was completed, I covered my dining room chairs with the fabric I bought before I knew my diagnosis.  I reread the story I had written about my mother’s and father’s deaths, and read my journals from years ago eliminating those pages that I didn’t want anyone to read.  I took clothes to Goodwill that I will never wear and organized my other clothing so my husband wouldn’t have to.  I cleaned the top of my cabinets in my kitchen where I display favorite glass wear and plates.  I cleaned my front and back porches and repotted several plants.  The porches look the nicest they have looked in years.  Soon I will tackle my attic.
The reason I have kept a journal since I was seven (no, I have not written every day) was so I would not forget the details of things that happened in my life.  The objects I have kept are like my journals.  They spark memories that I have stored in my mind and these things make them resurface.  The mere touching of one of my mother’s books or the scissors she used when she sewed just brings back a flood of memories.  Yes, I cry over these things that I have kept, but often they are memories of how I much I loved that person.  I hope the objects that I have created and am creating will spark happy thoughts about me for my children and my husband.  I hope that I have been important in their lives. 

This morning when I awoke, I began thinking about Tim McGraw’s song Live Like You Were Dying.  (This song has always brought me to tears.) The song describes experiencing the thrills of life. While I see why someone would want to get those adrenaline rushes, my diagnosis gives me the chance to plan, to prepare for my death.  I suppose if I could say one positive thing about my situation, this would be it.  I get to plan.  No, you won’t see me on a bull named Fu Man Chu, or sky diving, or mountain climbing.  Knitting or quilting a blanket and spending time with loved ones is more my style.  Those things would not be great to sing about in a song, though, because it just does not capture the essence of living and how much fun it is.  Imagine these song lyrics…I spent many hours knitting, long hours sitting,... well you get the picture.
Someone might remember my riding a bull, but for me there is more significance in leaving something tangible behind.  My father fenced in our backyard and built a barn for our horse when I was a kid.  He died in 1994 and that fence and barn are still there.  So, a piece of him is still here, and it is not just a memory. That brings to mind another intensely emotional song for me, “The House that Built Me” sung by Miranda Lambert. 

If I could just come in, I swear I'll leave
Won't take nothing but a memory
From the house that built me

Miranda Lambert - The House That Built Me Lyrics | MetroLyrics   
There are those memories again that only I know and will die with me. 

My projects that I finish, my kids and my husband will be able to touch.  They are little pieces of me that I will leave behind.  So my message to anyone is don’t leave things undone cause you might not get the chance to live like you were dying.
Here are the lyrics to the song.  Get the box of tissues!

He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?

An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:

"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?

"Sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And then I loved deeper and I spoke sweeter,
"And I watched Blue Eagle as it was flyin'."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'."

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