10 Dec

This post has been weaving itself in my head for about a week.  But the story keeps changing.

When the post first started, I was going to call it Big Decision.  Two weeks ago I decided I wanted to make an appointment with my oncologist.  We hadn’t been to see Dr. Ari since late September; the appointment when I told him I was finished with chemo.  Leading up to the December 9th appointment, I went back and forth trying to decide if I was going to ask the doctor how much time he thought I had left.  I am a planner.  Of course I wanted to know what sex my babies were.  Before every trip, I make a long list so I won’t forget anything.  I am rarely late.  So finding out how much time I had left made sense to me.  I could plan it.

The appointment drew closer and I changed my mind.  I didn’t want to know.  Neither did Adrienne.  Or the kids. So the post would have ended with me finding another way that cancer has changed me.  I can be flexible some may say almost spontaneous.

There were other reasons to see Dr. Ari.  A prescription for Vicodin. Questions:  Now that I am no longer in treatment, who will be my doctor?  Palliative care?  Hospice?  Dr. Ari came into the exam room and hugged each of us.  He sat on his little rolly stool and leaned in close to us.  We talked about how I was feeling.  “Who will be my doctor now? I asked him.  “I am not just here to push chemo on you.  I will be your doctor until the end.”  Adrienne and I were relieved to hear his answer.  He then explained to us why he didn’t think palliative care was the way to go.

And then came the real decision; and I made it without even thinking.  It is time for me to go into hospice. Now that doesn’t mean a hospital bed will show up at the front door.   Now is a good time to set it up, while nothing is desperate and I’m feeling pretty good.  It will give us time to find a team of people that works well with our family.   Dr. Ari explained to us how it works, how my hospice nurse would work with him to provide the best care for me.

We left the office and went to lunch at one of our favorite places.  The big “H” word had really hit Adrienne.  I was feeling responsible and forward thinking. Choosing hospice was the right way to go.  We shopped for a few last stocking stuffers and went home.

It wasn’t until later, when I was sitting in the bathtub, (My best thinking place), that it struck me; I am making plans for my own death.

Last night was a big step.  Up until today it has only been theoretical , not reality driven.  Adrienne and I had a good cry.  Then after much tossing and turning and melatonin taking, I fell asleep.

I fully expected to wake up and write the updated blog post. It would be about taking the small emotional steps leading to a new understanding.  I thought today was going to be a rough, on the verge of tears day; but something happened around 2:30AM.  I got up to let the dog out, and laid back down.

Over the last six months or so, I have struggled with doing legacy work.  Legacy work is fancy for writing letters, making videos, etc. for those you leave behind.  I haven’t been able to do it.  Every day that I didn’t put pen to paper I felt guilty.  I can guess a whole bunch of reasons for my inertia.  When I got back into my warm bed, my brain popped awake.  I thought about the boxes in the basement.  So many photos, letters and other things I have saved over the years.  In my head I made a box for my sister.  And one for my brother. And I made a mental list of the things I want to share with close friends.

And I thought about the baby books.  I never made baby books for Quinn and Mac.  I planned to make them for Christmas gifts.  Just old fashioned photos glued in a book.  I would add little stories about the photographs.

Adrienne woke me up at nine this morning.  I drank my caffiene in the form of ice cold Coke.  Yesterday I actually purchased the photo books.  I spent the morning and part of the afternoon gluing pictures into the book for Quinn.  I laughed and told Adrienne stories.  I got a tiny bit weepy; not from sadness, but from the joy I have had in raising that serious, goofy child.

So now the never ending blog post in my head ends.  By deciding to go into hospice, the strange anxiety about legacy work is gone.  My mood is high.  It reminds me of the last few days of pregnancy; nesting.  I’m not going to worry that it all means my time is coming sooner.  Instead, I’m going to enjoy the feeling of creating something that my kids can hold on to for a long time.  I’ll give my mementos away to friends and family who can use them.


Posted by on December 10, 2013 in Uncategorized


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6 responses to “Hospice

  1. Naptimewriting

    December 10, 2013 at 11:34 pm


  2. violinnovator

    December 11, 2013 at 6:41 am

    I’ve been a lurker for quite a while (linked from Naptime Writing.) I have A Thing for excellent writing. I’ll return to lurking in a minute, but wanted to let you know how much influence your words have had on me, how much perspective I’ve gained about what is really important. Your wife and children are so lucky. Forgive me, but I’m not sure what to wish you: luck? Peace? Happiness? A seamless transition? I loved the nesting reference. I hope you don’t mind if I use it when it’s eventually my time to transition.

    • jaydeyoung

      December 15, 2013 at 9:41 pm

      Thanks for your message. Naptime writing has been one of my biggest supporters. She came to visit with her cutest son and brought bubble drinks. Thanks for reading my blog. I’m happy that people who I don’t even know read it! Makes me feel like a real writer. Luck, peace, happiness and a seamless transitions seem like pretty fine things to say. And I say the same to you!

  3. Autumn

    December 16, 2013 at 10:46 am

    Thank you so much for again sharing your thoughts with us on this journey. I can’t even imagine how impossible it must be at times. I know that Quinn and Mac will treasure the memories and legacies you leave with them forever.

  4. nathan

    December 19, 2013 at 12:51 am

    Hi Jay, I have some pictures and videos of Mac and Stanley playing over in Truckee that I’ve been meaning to give you for a while. A while being maybe 2 years now. I just signed up and logged in to the whole facebook thing so I could post them there for you. Its kind of long, but I was mezmerized by how they made this whole little world and kept going, kind of like really good improv. I should have them up before I leave this Friday. I guess you have to friend me or something first.

  5. nathan

    December 19, 2013 at 12:54 am

    and mezmerized should be spelled mesmerized. Although I think the Z’s really add to it and would prefer if people started doing it that way.

    I spent some time and read through your blog today and it is really incredible. You really are a phenomenal writer, and have such a gift for reaching people.


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