April 5, 2019

I’m HOME, and my blasts are DOWN!

I spent just under four weeks in the hospital. The day before discharge I even got a pass to go out to dinner with Mike and Erica. It felt very military… a paper signed by a few authorities with strict guidelines of when I needed to be back, and who to call should anything happen… stickers… a stamp… paragraphs… All to step outside. Walking left me winded. The sky made me cry. I didn’t realize how much I missed it! We went to a ramen restaurant and ate grilled skewers and soup. It wasn’t the best food, but the freedom was delicious. By the time we got back I was exceedingly tired and Erica wheeled me back to my room in a chair. That night I underwent another sleep study to make sure I could go all night without needing extra oxygen. I passed.

Out to dinner- enjoying the sky

As the hospital discharge process cranked along the next day, I savored the things I most appreciated about my stay, and tried to mentally prepare myself to take over keeping track of my piles of meds. My care giver-friends kept stopping by to chat and we packed up all the stuff I’d accumulated (well, Erica packed it up while I lounged around). We ordered the tastiest desserts on the menu with our lunch- a hot scooped browny and a carrot cake, and talked with providers as they rounded by. It felt like moving out of a dorm room. The final step was the most unpleasant: a breathing treatment for preventing some sort of lung infection… I should have paid more attention. I figured it would be a little puff of air to breathe in and I’d be good to go. Oh… was I wrong. I was a huge set up, and 15 minutes of breathing in poison flavored gas. It turns out I’m pretty tough when it comes to general pain, but spineless when it comes to lung challenges. But there was Erica, ready to help me through. She had to wear protective gear from head to toe to be with me during the breathing treatment. She read me a wonderful story by Wendell Berry to pass the time. And then… my delightful dad showed up!

This part was the warmup. Not too bad.
Making a hand tossed– Candy Salad for the nurses station.

Coming home was so sweet… and so difficult. My muscles have atrophied a lot from being in the hospital and I can’t interact normally with Mike and the kids, and that is overwhelmingly sad- but it’s countered with the joy of being with the people I love and not being held up in the hospital bed.

Fashion is me

Where things stand now…

  • Bone Marrow Biopsy showed a preliminary 6% Blasts!!!! This is huge, my friends!!!!! The cancer has taken a HIT!!!! I could get a transplant at these levels!!!
  • I’m on dialysis three days a week. My kidneys must wake up! Please pray that my kidneys are healed!
  • Thursday is our big meeting with Dr. Hall to discuss our options… including can we possibly transplant on dialysis??
  • It’s time to get buff. Transplant would require another month at the hospital and I need to gain some weight and muscle mass! With kidneys not working, I gather water in my gut and ankles one day, lose it on dialysis day… it’s very odd.
  • How am I? I feel emotionally wrung out, but I’m trusting in God’s good plan for my life- and death- whether sooner or later. I feel like I’m a clay jar that is crumbling, but I’m held together in God’s hands. Not one piece is out of place, even though I’m thoroughly broken. He’s holding me just right.
My Dad doing yard work with Marian

20 thoughts

  1. Oh Heidi you are the dearest thing. You are so brave to just sit and focus on writing this beautiful update. That takes so much courage. The picture of you in the car for your dinner out just touched me to the core. You sitting with your precious children is just that….precious.
    God love you and give you good things each day to encourage you!
    Praying for the needs you listed and asking for God’s grace upon you.
    Love, Vicki

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  2. Sweet Heidi. So thankful that those blast cells are down. Praise God! Will pray for your kidneys and strengthening and adjustment to home with its joys and challenges. Praise to God for your testimony of His faithfulness. Your eloquent, inspired words remind me of the Laura Story song, “I think of You” (from early album Great God Who Saves–so good) “I think of You who shines with endless light through broken jars of clay…”

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  3. Hey Heidi, been following your pilgrimage from afar here in Lyon. Thinking about you and praying for all the specific challenges that you face.

    Glad you have family around and people reading Wendell Berry ! 🙂 love that guy. One of the wiser people around these days.

    I’m sure it’s good to be home, can’t believe it’s almost been a month! Enjoy!!

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  4. Hey Heidi, been following your pilgrimage from afar here in Lyon. Thinking about you and praying for all the specific challenges that you face.

    Glad you have family around and people reading Wendell Berry ! 🙂 love that guy. One of the wiser people around these days.

    I’m sure it’s good to be home, can’t believe it’s almost been a month! Enjoy!!

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  5. Hey Heidi, been following your pilgrimage from afar here in Lyon. Thinking about you and praying for all the specific challenges that you face.

    Glad you have family around and people reading Wendell Berry ! 🙂 love that guy. One of the wiser people around these days.

    I’m sure it’s good to be home, can’t believe it’s almost been a month! Enjoy!!

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  6. Following your journey every step… I’m SO happy to hear of the improvements! Congratulations on making it home!! Sending out lots of prayers to help you along the way.

    Kisses from the delicious ones.

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  7. Dear Heidi, you are in my prayers. I pray for healing and strength for you and your family. I pray that your kidneys will wake up, that the transplant will be successful, and that your life will be forever blessed by what you are going through.

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  8. My dear sweet Heidi…so excited that you are home and that you are kicking that cancer in the butt. Definitely praying for those kidneys and building yourself up but also just your transition to being there.
    You are an amazing woman. God has his loving arms around you and your faith is so encouraging! This new life at home sounds like it could be a bit taxing so praying you can take one day, one task at a time and trust Him with it and in it! Love you lots!

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  9. Heidi – your parents are in our small group and we pray daily for your healing, for Mike’s role in all this and for peace for your children and your parents’ hearts. Thank you for opening the door of your soul and helping us see the Lord Jesus living with you through this. Your words reveal His work in and through you including your care of caregivers, your mothering through this and your honouring your extended family. Praying your kidneys sense the many reasons around you to awaken.

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  10. Oh Heidi, I just learned about this and read your entire blog. (I’m not on Facebook often.) We will be praying for you everyday. I understand exactly why the nurses and aides wanted to stay in your room and chat. Even through trials, you are still the same Heidi I remember from Oklahoma. 🙂 You are such a woman of faith and once again have proved that. We will be praying for you, the cancer, Mike and the kids
    Natalie

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  11. Thank you for writing these updates for us so we know exactly how to pray! So thrilled you get to be home with your familia. We will continue praying for progress!

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  12. So glad you are home transplant buddy. I had the same problems with weakness and atrophy and figuring out the pills. Bob has graciously kept my drugs organized for
    me 4 years later! Mike and everyone have done a great job with your kids. But the picture shows they love Mama Rock and she is Home and it’s all ok now.

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  13. Heidi, you don’t know me, but I work with your Dad. When I heard about all that you are going through I asked your Dad to give me one of your children to pray for. I have a picture of James at my desk and I’m praying for him so often. It is a pure joy. Praying for friendships, for strength, for joy in play and adjusting to routines. I’m praying for you too, but my call is to lift your little boy in prayer. Blessings to you in all of this.

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  14. Praying like I have never prayed before Heidi. Thank you for sharing this with all of us. Your pictures are so touching that I am on the front porch crying. I love you Heidi. You are beautiful inside and out and I always look back fondly when you, Erin and I would get together and pray over our husbands. Xoxo

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  15. Hey Heidi,
    We met a couple times in Monterey and had a great conversation in the Nursing room at Santuary Church 🙂 and we have a mutual friend Jacqui Teti that forwarded me your blog. Sorry you are going through this, but I am so encouraged by your faith. Stay in the fight, dear sister. We are lifting you and your precious family in Fervent prayer from Albany, GA.

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