Sunday, October 17 – Home and hope

Heath and I are sitting here in Room 5210, which is one of the smallest on 5200 and has been our “home” off and on for the last 3 weeks.  I snapped a few photos.  I asked if I could take one of him.  He said “Seriously. no.” (in a slightly steroid-cranky voice) and then I asked if I could get his knee in the photo and he said, “that is completely unnecessary.” (in an equally steroid-cranky voice).

We are watching football from London, and worship, of course. Chris is leading worship this morning for the first time since the end of August, assisting our dear friend, Dan Lewis, who preached. Heath’s eating munchkins and I am drinking a chai latte. Heath is dreaming out loud about adding a golden retriever therapy dog to our brood (for him and then to share with others!) and in the midst we are throwing out ideas for not-too-far-away-drive spring break excursions.  While this seems like an odd activity as we sit in the hospital finishing up the cycle 4 chemo week, a little more than half done with treatment, I have decided that it is an act of HOPE. It is an act of looking forward.  Of dreaming of a time when this particular experience of hard stuff is past. Hope.

So I guess that tells you how he is feeling (other than a little cranky, which he blames on the steroids) — he is doing pretty darn well.  He finished the last infusion of cyclophosphamide at 2 a.m. and had the necessary 6 hours of fluids, and now we have just been told that he can GO HOME!  Folks, after starting chemo a day late due to some kidney number questions, this is awesome.  Heath had a lumbar puncture with low sedation on Thursday right here in sunny yellow 5210 and the medical staff and Chris said “he crushed it.”  He has not felt nauseous. We are attributing some of that to having the ostomy, so it is strange to be grateful for that darn thing/emergency surgery, but this week we will be grateful for whatever helps as his body takes body takes in all those heavy meds.  He just told me that he thought he would be able to walk downstairs (we’ve needed a wheelchair each discharge previously). Hope comes in all different ways.

An approved arm photo on the way home early this afternoon.

The roller coaster continues.  We are under no illusion that all will be smooth. Week 2 of each cycle is the week when your white cells go to 0 and you become neutropenic, when patients often spike fevers and feel pretty crummy.  We’ll go back to clinic on Tuesday for his next lumbar puncture and labs.  We’ll monitor closely.  He’ll take lots of meds.  He’ll eat and enjoy being in his own space.  We’ll continue to find our way in the midst. We’ll find some other ways to hope.

By the time you read this, we’ll be settling into the screened porch on this beautiful, cool fall day and the “Heath cave” will be calling for a long nap. We’ll update more as the week goes on, but for now, we’ll just say thank you for continuing to hope alongside us.

44 replies
  1. Terry Hammersley says:

    This gorgeous and still warm weather is all for YOU, Heath. I hope it is healing on top of just being home. You are so wise, Carrie — good idea to plan for something wonderful after all of this is over. Love you all, Terry

    Reply
  2. Barbara Burrus says:

    We are in continuous prayer for Heath and family. I know Chris was excited to be back to his calling. I love that Heath is dreaming and planning ahead even if it means another dog! I pray you all have continued hope and dream for a healthier future. Love to all.

    Reply
  3. Mary Kathleen Duncan says:

    Heath, I know you’re parents are mostly updating and managing this website, but I’m thinking of you and your entire family tonight. I remember praying for you when you were a baby and I was a student at Columbia Seminary. When I lived in Atlanta, the church I attended sang the below blessing all the time. I’m in Montreat (one of your special places too, I’m sure) tonight and it keeps running through my head whenever I pray for you.

    Deep peace of the running wave to you.
    Deep peace of the flowing air to you.
    Deep peace of the quiet earth to you.
    Deep peace of the shining stars to you.
    Deep peace of the gentle night to you.
    Moon and stars pour their healing light on you.
    Deep peace of Christ,
    of Christ the light of the world to you.
    Deep peace of Christ to you.

    From one cancer warrior to another…hang in there. That’s all we can do. And soon you’ll be on close getaways again.

    Reply
  4. Christina Horne says:

    Thank you so much for your updates. We are so thankful for the power of hope, that Heath was feeling relatively well this week, and you get to be at home on this lovely fall day. We are thinking and praying for you all often, along with our prayer group and church. May the Lord bless your family and give you continued strength. We are here if you need anything at all. Much love to you.

    Reply
  5. Lori and Bill Hawkins says:

    Carrie and Chris,
    Thank you so much for these updates. I hope you know how much your church family loves Heath❤️ Prayers continue for strength and hope, as well as his wonderful medical team.

    Reply
  6. Melissa Burris says:

    Thank you so much for all you put into each and every update. We share your gratitude for each little bit of progress and good news, and we hold you in our hearts as you continue to face the challenges. We’ll keep sending daily (and often hourly) prayers your way, and the entire choir and staff of First Lutheran Church wants you to know that they are praying for all of you and sending their love as well.

    Reply
  7. gordon wright says:

    Heath (and family), What great news to hear that you are home. I remember how good it felt to get out of what Amy referred to as Hotel Duke and back to my own room and bed. I also remember how Mr. Cyclophosphamide made me feel and it was not my favorite memory. I know you were kinder to your therapy dog than I was. Mine came a few days after an infusion and so he met with a rather grouchy “friend”. I applaud your courage. Like me , you are blessed with a loving family and great friends ,both a game changers. Sorry I haven’t written sooner. We have been involved with infusions here also. Lymphoma can be ugly but it can be conquered. My Duke doctors helped me do it nine years ago and I know your Duke doctors (and family and friends) will help you do the same. Stay strong. All my best Gordon

    Reply
  8. Renee Clark says:

    Crank on Heath and keep looking ahead. We’re sharing your HOPE. Our gentle, sweet, therapeutic (old) Stella sends you love along with ours.
    Renee and Len

    Reply
  9. Ann Flagg says:

    We’re so impressed with how brave Heath is. Continued love, prayers and yes, hope to all of the Tuttle family.
    We are so grateful for your continuing to keep us informed.

    Reply
  10. Charlotte Edens says:

    Click, Click, Click,
    “There’s no place like home”
    Welcome home Heath and all!
    Prayers of hopes becoming reality and big ole hugs,
    Charlotte

    Reply
  11. Daryl and Kim Fisher says:

    We continue to be people of Hope and Faith! Prayers for “looking forward. Of dreaming of a time when this particular experience of hard stuff is past.”
    Many hugs and much love to you all! 🙏💜🙏

    Reply
  12. Faye Shaffer says:

    It was good to see Chris in the pulpit this morning, especially when Tom remarked, “that looks like Chris!”
    I just looked at him with my quizzical , rolling eyes expression. Then when Chris spoke, Tom remarked,
    “it is Chris!”. My expression remained the same but I must explain that Tom is still recovering sight in one eye
    following eye surgery so he really thought it was the guest preacher. Actually I didn’t expect to see him there either. Hope this week goes well and we get that knee picture.
    Blessings to the family.

    Reply
  13. laura S mendenhall says:

    May the God of HOPE
    give you all joy and peace in believing
    so that by the power of the Holy Spirit
    you may abound in HOPE!

    Reply
  14. Patty Hill says:

    Hugs and love and prayer and above all Hope for the day when Heath can walk out of that hospital
    He is braver and stronger than any one know
    God Bless u all

    Reply
  15. Heather Hale says:

    Been thinking about y’all a lot the past couple months. 🙏🙏🙏 and energy coming y’all’s way! 💗💞💗

    Reply
  16. Betty Berghaus says:

    Prayers continue, for many things – for healing, for comfort, for patience, for strength, perhaps even for some occasional healing laughter! God bless.

    Reply
  17. Betsy Rule says:

    Carrie, Thank you so much for keeping us up to date! Sounds like Heath is very spunky, and that’s a good thing!! Tell Heath the people at Faith Presbyterian love him, and we’re praying for him!

    Reply
  18. Christie Masinick says:

    Still reading along and praying with you. Great to hear that Heath is looking forward (and that you are too). Hope is a very powerful thing. Sending our love, The Masinicks

    Reply
  19. Barbara says:

    God is always good but this time God is here with you Heath and your amazing family❤️ sending continued prayers, hugs and so much love..

    Reply

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