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How to talk to someone with stage IV cancer

10 Sep

For those of you who follow my blog, you know that over the summer I really felt that my death was no longer creeping up on me; it was rushing towards me with a speed I hadn’t anticipated.  Well, that turned out to be my own head; not my body.

Today,  I’m sitting in the infusion room waiting to start my fifth chemo treatment, ( 22nd overall.)  But the fact remains that at some point, all the medicines will have failed and cancer will ravage my lungs and I will die.  My numbers aren’t really going down; in fact, they have gone up one point.  So the chemo is holding the tumor steady, but cancer is easily adaptable and soon the poisonous chemo will have no effect.  Sad, but I am happy I have the time to be with my family and to help prepare them for a life without me.

After my death seemed not to be in my lap, but just over the horizon, a friend posted this comment to a blog post of mine:

I have to say, I want a post on how to be a friend to someone with Stage IV cancer. I want to hope until there is either no more cancer or no more breath, but is it cruel to say “you have more life to live” if you don’t actually get that life? Is it mean to go along with you when you feel as though you’re dying if it turns out your three big tumors are really two little, receding tumors? You were so sure. Is it wrong to go with you, or is it wrong to contradict you? Put aside for the moment that the cancer is the bastard here, not the friends who are trying to navigate the absence of a Cancer Miss Manners…

I want to attempt to answer.  Of course, remember that this is my answer.  Other people with stage IV cancer may have different answers.

My journey through stage IV cancer has been a twenty-one month roller coaster ride of chemo, radiation and surgery.  My prognosis changes with the tides it seems, but the fact has always remained that I am fighting for time, not for my life.  Sometimes I want to think about my death.  I want to plan for it.  I want to face it bravely and with dignity, (and hopefully with facial hair).  Other times death sneaks up on me and I don’t want to contemplate it, but often the thoughts of dying overwhelm my small human brain and I can’t talk myself out of it.  I told my friend to ask, “Do you want to be talked out of this place?”  My answer could be different every day.

My friend wants to believe and hope.  So do I.  And I love that there are people hoping and praying for me everyday. If someone says to me, “Miracles happen,” many days I will agree; but I feel I have had my miracle.  Having the first lung surgery was a miracle.  And so was the second surgery.  I have had a year of life that would not have been mine without the surgeries.  Just because I don’t think another miracle will happen doesn’t mean others can’t believe it.  My life is spent balancing the present with the future.  I have to be pragmatic.

Friends have disappeared over the last three years.  And new friends have emerged.  Some people are more comfortable than others when it comes to dealing with such a heavy subject.  It’s okay.  I’m not angry with those who have left.  I do think they have missed a chance to grow and learn, but death comes to everyone at some point.

For those of you who are with me, please know how much your love means to me.  Having cancer can be a very lonely place.  So here are a few ideas.

When people say to me, “I’ve been thinking about you,”  I want to tell them to do something about it.  If I don’t know you are thinking about me, it doesn’t really help either of us.  Send me a text.  Write something on my facebook page.  Call me.  I’ve started doing this myself.  If I am thinking about someone who means something to me, or a friend going through a rough time, I let them know that I am thinking of them.  Takes no time at all and on some days could mean the difference between a lonely sad day and one that feels hopeful.

Now, I know that some cancer patients hate to be told, “Well, you look good.”  It makes them feel what is really being said is, “You can’t possibly be that sick.”  I like to be told I look good.  I never want to look sick.  I want the fact that I have cancer to be something that has to be told to people, not something that even the grocery store clerk can see.

This whole ordeal is uncharted territory for me and for most of my friends.  We are all fumbling around.  Don’t think you will say the wrong thing.  If you say it, I’ve probably thought it.  And how often have I reacted to anyone in anger?

And one last thing; just because my life’s problems seem giant compared to yours doesn’t mean I don’t want to hear about your life.  It’s great to talk about something other than myself and the cancer that has taken up residence in my body.  I want to hear about your kids, your partners and your life.  I’m not jealous or upset.  We all are living the life we have.  Let me still be your friend.

Well, I don’t know if that answer helps at all.  I know what works for me.  My life is not what I had hoped for, but I am making the best of it.  For those of you around me, you will never know how much your friendship means.  I know it takes bravery to face the reality and stay in my life.  Thank you for doing it.

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Posted by on September 10, 2013 in Uncategorized

 

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20 responses to “How to talk to someone with stage IV cancer

  1. Anne-Marie

    September 10, 2013 at 12:19 pm

    Hi Jay. I have to say, when I first met you, I thought to myself–“I like this guy… He is really down to earth and cool.” I could be real with you, and laugh and be my silly overbearing self in some situations.. but I genuinely lit up when I would see you walking through the gate. “He’s a gem in this world” I would think…. I have thought about you.. almost every day in fact. I am so amazed at your farm, and your kids, and your wife… and everything you say in the face of what you are dealing with. I feel humbled and grateful to even be able to read your blog. I know this sounds silly….but I just had to say it.. .. as ‘I have been thinking of you’…… I know we were never super close… but I cry for you and your kids and the amazing strength you have and the amazing words you share. Thank you so much for being you… and I thank the universe that we crossed paths……. ❤

     
    • jaydeyoung

      September 11, 2013 at 7:33 pm

      Anne-Marie! Good to hear from you. Thank you for your kind words. I love seeing your pictures. Your kids are growing up so fast. I can’t believe how big Teagan is. Seemed like you just had her.
      I hope things are going well for you and I bet you are in better shape than you were before you got pregnant.
      Have a great day,
      Jay

       
  2. Mark Wasserman

    September 10, 2013 at 2:54 pm

    Jay, I’m always blown away by how insightful and thoughtful each of your blog posts are. You’re always in our thoughts, and I wanted to make sure you knew that. Your bravery and perseverance through everything you’ve had to go through (and I’m sure I only know a small fraction) is truly inspiring. You’re the best.

     
    • jaydeyoung

      September 11, 2013 at 8:07 pm

      Thanks, Mark. I think about you guys as well. I saw Irene and Hazel at ECPC last week. Hazel was the only kid there I recognized! Thanks for reading my blog. Makes me feel like I am connected to those I don’t see much anymore. I hope things are well with your family,

      xxoo,
      Jay

       
  3. pianoshay

    September 10, 2013 at 7:50 pm

    Your honesty in dealing with cancer makes it easier for me, at least, to talk about anything with you. I appreciate you so very much, Jay. I’m one who believes that what we deeply believe becomes true for us – our thoughts can create miracles. So I’ll send out prayers and thoughts that affirm that you are a perfect, whole and healthy Child of the Universe. Hold that belief with me, Jay. Watch for the positive changes to occur. .

     
    • jaydeyoung

      September 11, 2013 at 7:35 pm

      Thanks for the reply. I’ll take all the prayers and thoughts I can. I do believe that I am a child of the Universe. My time will come when the time is right. Until then I plan to live my life exactly as I am; full of love and gratitude.

       
  4. Bonnie Lynne Engel

    September 11, 2013 at 12:22 am

    Thank you for your honesty.
    Emotions are often ragged and words often don’t convey ones true meaning.
    My best to you and thank you for your support to so many.
    Bonnie

     
  5. Cindy

    September 11, 2013 at 7:05 am

    Dear Jay,
    This is Cindy Burton, Erin’s friend. You visited me in Vermont with Quinn, Mac, and Erin; I also came to your house in Oakland (many years ago, actually right after my son died of cancer). can I write to you off line? Thanks, Cindy

     
    • jaydeyoung

      September 11, 2013 at 7:53 pm

      Hi Cindy, I think of that visit to Vermont often. The kids were so little and we had so much fun. Magic Hat is finally being sold in California! I drink it when I’m not in chemo.
      Here is my email address: jay_deyoung@yahoo.com I’d be happy to talk to you.

      xxoo,
      Jay

       
  6. Felice Luftschein

    September 11, 2013 at 8:44 am

    Hi Jay- Remember me? I remember you and do think of you often. I think of our kids who are so close in age and how they were little babies in Eugene at the Saturday Market the last time I saw you with Erin so many years ago. I started reading your blog a few months ago when Erin posted a link on FB. I come back every once in awhile. To be honest sometimes I just can’t bear to think about cancer, facing it and death and pain and all that. Both my parents had colon cancer and seem to be OK for now – my Dad the cheapest man on earth says the colostomy bag saves him money on toilet paper and my brother had kidney cancer so I figure my genetic probability isn’t too good and try to avoid “going there”.But you write to so well and honesty that I can’t stop reading it. Thanks for sharing your life. Still thinking of you and wishing you the best.

    Felice

     
    • jaydeyoung

      September 11, 2013 at 7:51 pm

      Hi Felice!
      Of course I remember you! You know I have a friend here who knows Nick. When I first met him, I thought, “That William is a guy like Nick.” Then I found out they knew each other.
      Sorry to hear about all the cancer in your family. Seems to be everywhere. Scary.
      Sometimes I get bummed out about how serious my blog gets; but it really is my emotional outlet. Thanks for reading.
      I hope your life is going well. Are you guys still doing the market? I get up to Eugene occasionally. My sister is still there. I wish I could move back; impossible with a split family, although Erin and I get along well and parent well together.
      Thanks for commenting. Good to hear from you.

      xxoo,
      Jay

       
      • Felice Luftschein

        September 11, 2013 at 8:10 pm

        Hi jay-
        oh yeah- William (aka Bill) Abernathy- !I remember seeing his name pop up on one of Erin’s facebook posts and saying- how the hell do you 2 know each other ?small small nerdy world.
        We’re doing great. Our internet jewelry sales have been doing surprisingly well and our Saturday Market sales were falling in the opposite direction at the same time as well as our desire to interact with customers face to face in the wacky world of Eugene. So we decided to take an official year leave of absence from the market and likely will not return as sellers if all goes as planned. I’m enjoying having weekends at home and not spending 12 hour days working on Saturday. Getting too old and tired for that.
        Keep blogging- I can’t wait to read your book.
        love to you and your family,
        F

         
  7. Connie L

    September 11, 2013 at 8:59 am

    Hello Jay, this is the first post I have read but your words that you have shared here have helped me more than you could know. Just over a week ago I was told I have stage IV of a disease which is not cancer but a liver disease (stage 4 is the final stage as well). People say to me “oh I am sorry to hear that” and because I was in almost panic mode I pretend its no big deal but then I think to myself it is a big deal and realized there is nothing they can say right now other than “Oh wow I just found a cure and I will be there with it in half an hour” that would make me feel better. I agree that when people are thinking of you they need to let you know. I agree with you that talking about other peoples lives is good….it makes you (me) feel “normal” for a moment. I heard something once on the TV show House that has just sat in my heart; “people don’t die with dignity, they live with dignity”. I just love that and I hope your time left is amazing for you and that your life if full of love, peace and dignity. Thank you for sharing your words.

     
  8. Penny Webb

    September 11, 2013 at 11:19 am

    When my husband was fighting his battle, he never acknowledged that he was going to die. Well, that one time–the false alarm–he actually talked about what it might be like for us to be left without him. But, after that we never acknowledged that he wasn’t going to make it. It was a weird place to live–in outward denial with this unspoken knowledge beneath that we were losing. Honestly, as we ran out of options and things were definitely not going to magically turn around, his belief that he could still beat the cancer was so strong that it would have been cruel to say something to the contrary. It has bothered me all these years that he didn’t face it, discuss it with us, and say goodbye. But, then again, his cheerful reticence made him a joy to be around. Like you say, everyone’s journey is different. And, what one person might wish to hear, another, not so much.

    I think you are facing this situation with a great deal of courage, grace and compassion–for yourself and others. I think you are an amazing person and I love you, Jay, even though we have never met! Your writing is marvelous. And, you are very wise. I look forward to continuing this journey with you, as your friend and fan.

    All the best,
    Penny

     
  9. jaydeyoung

    September 11, 2013 at 7:39 pm

    Thank you Penny,
    It is interesting how people deal with death differently. I chose this way because I thought it would be best for the kids, (although it is really hard and my two are in therapy.) It’s only been recently since I have given into the idea that there isn’t going to be a miracle. It was hard to let go of. I don’t feel I’m being pessimistic, I just want to live every minute knowing that the minutes are limited.
    Such heavy stuff!
    Thank you for the story. I have learned from you. I hope at some point that you and my wife can connect. Being the caregiver is a whole different game.
    I loved the pictures from your vacation. Beautiful. Good luck with the braces; we are facing the same trauma at our house.
    Love,
    Jay

     
  10. Kelly Olsen Parkinson

    September 11, 2013 at 8:24 pm

    My dear friend…..
    Your writing is eloquent and thought provoking. I refuse to let this time go by with out saying I how much I I look forward to each chapter as you write. Please know I think of you. With the return of Rover you had me in tears. What a tender mercy…Know you and your family are in my thoughts and prayers. What fun memories we shared as college roommates especially when we tried to teach a kid from Oregon to ski in the mountains of Idaho! I love you very much…. We shall be forever friends!
    Love you much….
    Kelly

     
  11. outlawmama

    September 11, 2013 at 8:41 pm

    I found you from naptimewriting. This is a helpful post and it’s left me with choices and options and for that I am grateful. I am wishing the best and the miracle.

     
  12. muddy feet mama

    September 11, 2013 at 11:10 pm

    You’re a gift, Jay. I thank God every day that I am here with you. Thank you for writing your truth. Your insight is powerful and healing. I love you. -A

     
  13. donnio

    September 11, 2013 at 11:14 pm

    Jay, I just feel blessed knowing you. Thank you for sharing your thoughts as well as your heart. with love and appreciation, donnio

     
  14. Ange Taylor

    September 12, 2013 at 3:34 am

    Wow…what a thought provoking blog! I don’t know you but you can best believe that a prayer will be said for you too! I remember as a child to ask that God’s will be done! That sometimes was hard for me (still is at times) because what God wants is not what you may want! However, I would like to think that whatever his decision is, that it be a good one! I went thru nothing like you but I too had to deal with the diagnosis, the two surgeries, chemo and then radiation for breast cancer. I didn’t do a blog but I did post on Facebook. Had to make this choice of hiding it or facing it head on and sharing the good and the bad. I think I may have done some folks some good! I feel the same about your blog. Folks need to know that it is just okay to be there. To say something. To not be there if they want. The part about folks saying you look good got me to laughing because I have felt the exact same way! In fact it got to the point that when folks would ask me how I’m doing I would say “Peachy” and let them think what they wanted to! I am so glad for you that you get to be there with your family and have the opportunities to laugh, smile, and even cry with them! God Bless You and again Jay, you will be in my prayers!

     

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