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Stage V

09 Oct

I am sitting outside, overlooking the hills of the Carmel Valley; hills so tall they are mountains, covered in live oak and pine.  The wind comes up through the trees and the sound reminds me of long summer days working in the forest in Oregon.  There are few sounds besides the wind; an airplane, every once in a while, a car.  The house is so unlike our own; it’s clean and uncluttered, and the perfect size for two people.  I took a bath in the outdoor tub this morning, watching the sun burn away the fog.  Adrienne is snoozing in the big fluffy bed.  My mind has finally relaxed.

Last Friday I found out my current CEA number.  For those of you who don’t know, CEA is a protein found in the blood of people with certain cancers.  There are at least twenty different, “blood tumor markers.”  Some cancers don’t have one, and not all cancers are reflected in a marker.  My cancer has followed the CEA number religiously.  If the number goes up, cancer is on the move.  Mine has been as high as 65; normal is under two.

When I decided to quit chemo, my CEA number was 13.  Now it is 20.5.  I knew I was making the right decision, what I didn’t know was that having that number go up would send me into another freak out.  Now it is official; I have stage 5 cancer… I am terminal.

Terminal is an awful word and I will never again use it to describe myself.  I haven’t yet decided how to describe myself.  It reminds me of when I was pregnant, very pregnant, and I looked in the fridge and saw the expiration date on the half and half.  The date was February 15.  My due date was February 10th.  That half and half would still be good when my baby boy was born.  And it was; he was born on February 13th.

I have an expiration date, but I don’t know it.  Will it be sooner or later?  And how do I live until then?

This is the hard part, how do you live while knowing you are going to die?  Sure, we will all die, and we can all ask when.  But my expiration date is coming. Will it be before the holiday’s?  Mac’s birthday?  Quinn’s birthday?  Mine?

I have said before that I am not scared of death.  I am scared of leaving.  I don’t want to miss anything.  Looking at the kids is hard.  I want to see what kind of grown-ups they become.  I want to see Adrienne’s turkey adventure come to fruition.  I want to keep learning and growing and be with my friends and family.  I could write pages and pages about the things I don’t want to leave.

The moment of death doesn’t seem nearly as scary as the downhill slide known as dying seems.  I have had a sore throat going on three weeks.  I’m coughing more.  These things scare me.  Will the cancer stay in my lungs or spread to other parts of my body?  Will I ever feel any better, or is this as good as it’s going to get?  Will I feel up for the vacations we have planned?

It’s time to find some answers to these questions.  I have avoided reading about death since I was first diagnosed.  Now is the time to take the fear and mystery away from something we will all face someday.  That feels like a good decision.  I am always one to run and find a book on something I am interested in.  The time has come to find a book on dying.

So how do I proceed, trying to hold living and dying in one hand? Even through the mundaneness known as regular life? I’m fumbling trying to find the answer.  But I believe it has to do with taking away the fear and being grateful for what I have.  What do I have?  I have so much; a family that I love more than anything, great friends, an eye for the beauty of nature, Mexican Cokes, my comfy chair, a little dog that sits on my lap, good food, an amazing wife… and even though it may be short, I still have time.

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7 Comments

Posted by on October 9, 2013 in Uncategorized

 

7 responses to “Stage V

  1. Basie Moreno

    October 9, 2013 at 7:40 pm

    Your strength amazes me. It’s hard to see this on so many levels as I wish Mario had the time to out down in words what you have been able to. He truly wanted to but his mind and time wouldn’t permit. Thank God you have that abilitity and chance, thank you for all you share. I love you big!!

     
  2. donnio

    October 9, 2013 at 7:59 pm

    Jay, your writing is strong, your devotion to your family is clear and your love of life is fierce, yet your body is under attack. Thank you for sharing your living experience with any of us who care about you and wish to learn from you. Please let me know when you are ready for your couple and family portraits. sincerely, donnio

     
  3. Elizabeth Pidgeon

    October 9, 2013 at 8:07 pm

    Jay, you and I… we’ve only briefly met. I know this: my husband chose the route you have. It takes courage, and not just one person’s courage. I think you are a remarkable person, not just for your recognition and embracing of the partner you have… Adrienne, but also because it seems you have found the strength to know yourself… and to trust that your partner is with you in this. My husband’s expiration date was supposedly six months. We had six days. So this I want to tell you: hold back nothing between the two of you. Don’t worry about not wanting to burden the person closest to you with your troubles, your hopes, or your wishes. To have and know someone is forever. The unfinished business is what haunts. Your gifts of writing will last for those who love you, I wish you the best along your path, both for you and all those you love. Safe travels, and precious memories.

     
  4. Tim Blue

    October 9, 2013 at 9:58 pm

    Jay,
    we have not met, but I have heard of you and am a friend of Adrienne’s from years back. Your love and the people who share this with you will help you through any answers or the experiences you have to go through. Thanks for the words, you help show what love is more clearly through them. as a believer believer in love as the prime value above all else, I wish you only the best in the times coming

     
  5. Autumn

    October 10, 2013 at 9:43 pm

    Hi Jay, this is Autumn from Camp Kesem. Just wanted to let you know I’ve been reading and I so appreciate your honesty, your authenticity, and your courage. Please tell Quinn and Mac that Autumn says hello and tell Quinn that some of my favorite memories from camp are the conversations we shared. We are sending you all so much Kesem love and magic and we want to support your family in any way that we can. Thank you for sharing your story.

     
    • jaydeyoung

      October 15, 2013 at 8:23 pm

      Hi Autumn!
      The kids will be so excited when I tell them I heard from you. I have been writing a blog post about Camp Kesem since the kids got home from camp. I hope you know how much Camp Kesem has helped my family. It seems that they went at just the right time to understand what they needed to at the time. It wasn’t until Mac’s second year that he really understood that you can die from cancer. The timing was perfect. Thank you for reading my blog. Writing it has really helped me go through this journey.

       
  6. Jeannie

    October 16, 2013 at 10:57 pm

    Jay,
    I have been absent from group much of this summer, but my thoughts are frequently with you. I just found out today about your blog and have spent the last four hours reading it from the beginning. I just want you and Adrienne to know I’ve felt less alone in all of this since meeting you both. Thank you for putting your journey into words.
    Jeannie

     

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