January 22, 2020

With the new year comes the anniversary of my diagnosis. At this time last year I was undergoing my first round of chemo, blissfuly unaware of the kidney failure that lied ahead, and of just how long this road would be. We did have a wonderful Christmas and New Years though… and then we got some bad news. My blast count is up between 18 and 19%. It’s hard to realize that after a year of treatment I’m worse off.

With the new year also comes Jame’s birthday. He’s 9! He loves writing comic books, and this is one of his characters. The cake was decorated to his precise specifications.
James got this chess set for his birthday. We’ve been rearranging the pieces ever since.

What’s the plan?

Right now I’m starting my second round of azacitidine chemo, and I’ll be taking venetoclax as well. The azacitidine is a series of 15 shots in the belly over the course of five days. It leaves my belly looking sunburned and it becomes very sensitive. The venetoclax is an oral chemo that’s supposed to boost the effects of the azacitidine. I should expect all my blood counts to drop with these and to be sustained with red blood cell and platelet transfusions. I’m a little nervous about being neutropenic (low white cells) again, since every time I have been has led to a hospital stay. Thank you so much to all of you who donate blood! If you’re A+, I’ve been using it all up.

My mother in law and I took the boys to see Madison Ballet’s Nutcracker. They actually enjoyed it!

What if this doesn’t bring the blasts down?

This is the main question I’m looking to answer at my appointment tomorrow. I’ll keep you posted. My guess? Stronger chemo.

What does success of the chemo look like?

Success would be for the blast % to come down under 5%. That’s the cutoff required to move on towards bone marrow and kidney transplant in Boston!

10th Anniversary Date. Buffalo wings included.

Please Pray

  • The blast count will be under 5% at next check in about a month’s time.
  • That I would avoid infection and sickness during my time being neutropenic.
  • That I would have good relationships with family and friends despite not feeling well. I love interacting with family and friends- it’s the highlight of my life- and I miss it terribly when I’m nauseated or struggling with low blood pressures and joint pain. Especially if I end up going down hill and not recovering, I want to make sure my relationships have been the best they can be!

How am I holding up?

Christmas and New Years were a real treat. There’s nothing quite like giving your kids presents… the excitement and thrill is so fun! Dialysis, though I still despise it, has become easier. My line is working well, and I mostly try to sleep to make the time go by. My anxiety hasn’t been too bad either. It does however feel like I’m hanging from a cliff. It’s hard to relax or focus intently on anything. I feel like I’m holding on to a rocky edge, feet dangling, and wishing I could either fall to my death or be lifted onto the ledge. Some days I don’t mind hanging, and my arms feel strong. Other days I can barely hold on, and I feel desperate. I can’t stay like this forever… one way or another, I can’t wait for this to be over.

A pile of people. David on the left, James on top of Papa Rick, Marian in the lap, Liam on the right, and myself. Who can resist the Berenstein Bears? Riveting literature. Just right for my attention span.
Marian has a new found appreciation for Captain America and Dau Weyddur. And of course her true love… blankie.

12 thoughts

  1. Thank you so much for the update…..My 6 yr. old granddaughter, Rosie, asked me at Christmas- ‘who is the family on your bathroom mirror?’ When I told her your story, she just stared and asked more questions. Such a sweet time with her of praying and thinking of others.
    Love you dear one……
    Char Reehm

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  2. Ah, sweet Heidi! How wonderful to hear you candidly talking to us again! My prayers have been fervent for you to ever grow closer to Jesus through this stark time of life. But do you know that as you allow us to glimpse pieces of your life, we are drawn closer to Him too? I love you, dear one. ~~Jeanette Baker.

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  3. Appreciate the update Heidi, I think about you a lot and pray for you frequently. Glad to see you enjoyed the holidays with family. Keep up the good fight! Love you!

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  4. The word that rings in my head as I read your update is “steady”… Even though the roller coaster is going on around you I see a steadiness in your life…even in the hanging my a thread. It’s only through His strength that anyone can have that calmness… I’m grateful that’s what I’m seeing but knowing the fragileness of each day.

    I know you don’t know me personally…but having held you at one time and knowing your parents I have a link and bond to your journey. You are blessed to have the foundation of faith your parents laid for you and sisters that fight fiercely for you. More important…for the number of times God has brought you to the forefront of my brain…you have to know you are on His mind constantly. Oh the love He has for you!

    I know God will bring you through this. I’m looking forward to seeing all He is going to do!

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  5. Thank you for taking time to share. Please know that we are praying for you. We love you and your family please don’t loose hope.

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  6. Prayer–the safety rope for people hanging off the edge–with their feet dangling! Thanks for this image. It helps me pray for your arms!

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  7. Gracias Heidi, es hermoso verte sonreír y jugar y cocinar y saber que eres cuidada y amada. Me uno a tus rezos, y que sigas caminando en este proceso rodeada de gente bonita. Te pienso siempre.

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  8. Hello Heidi! I’m glad you and Mike got to celebrate your 10 year anniversary! It seems like not that long ago. Every time I drink a big glass of water I pray for you- being pregnant you get prayed for often 😉 Keep holding on my friend! Your faith has always amazed me 😘

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  9. Thanks so much for sharing and filling us in on your life both the good and the not so great. I alway so appreciate your honesty and genuineness. It really helps me know how to pray. I am so so glad your holidays were fun and you could enjoy it with your family. I will definitely continue to pray about that darn dialysis and your new chemo regimine. I had so hoped and prayed you would be going to Boston sooner rather than later but hopefully this is just a speed bump to get over to get there.
    I really miss our chats and time together. Am praying for miracles and for
    God to do exceeding abundantly beyond all you can ask or think!
    Love you dear friend!
    Donna

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    1. Thank you SO much for your prayers, Donna… it means so much. Hope you guys are doing well and hanging in there with all the craziness these days. Much love to you both!

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