more and more hospital

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Hello, my lovelies.  It’s been a little while since I’ve posted.  It’s gotten kind of difficult for me to type.  I have neuropathy in my hands because of the brentuximab.  Thankfully I can still button my pants, though it takes a few minutes.  Usually I just wear yoga pants because, you know, I can.

I’ve been hanging out at Wellstar facilities lately.  I was in the hospital three times in the month of July.  My hemoglobin kept dropping, which meant I needed blood transfusions.  I also kept vomiting blood, so we knew I was bleeding somewhere in my upper GI tract.  Last week I nearly passed out while trying to do an MRI (for a look at a spot on my liver) and ended up back in Douglas Hospital.  The GI doctor decided to do another endoscopy and this time found several AVM’s on my stomach.  They are little spots where the blood vessels have burst and are bleeding openly.  So all of those got cauterized.  It’s been five days and my hemoglobin was 9.4 today, which is awesome for me!  And I didn’t puke all weekend.  So hopefully I won’t be having another staycation anytime soon.

I did get the MRI done while in the hospital, and it confirmed that there is a small lesion on my liver.  This basically means the lymphoma is spreading again.  So how do we combat it if the brentuximab isn’t working anymore?  Well, I’m going to try a new drug called Opdivo.  It’s not actually been approved for use with Hodgkin’s lymphoma, but we applied with my insurance company for what’s called “compassionate use.”  So hopefully we will get an approval soon.  Then we can get the new drug in me and get these masses to go down so that I can do the next transplant.

On a personal note, the kiddos started school today.  Fiona is in kindergarten and Elliott is in 3rd grade.  I’m really not sure how that happened.  I mean, wasn’t it just yesterday that I had a baby and a toddler?  I swear it was.  At any rate, they had a great day and I’m very pleased with their teachers.  It is a little weird not to be starting back to school myself, but I know in time I will make it back to the classroom.  Until then, I suppose I’ll just have to content myself with the role of “homework helper!”

Love you all.  Thank you so much for your many good vibes and prayers these past few weeks.

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4 responses »

  1. Hi Kristi, Rachel shared your post. You are a remarkable young woman. I see why Rachel thinks so highly of you and treasures your friendship. Love and prayers to you and your family. Ronny Carr

  2. “We are like the stars
    of the Milky Way,
    twirling in time,
    moving gracefully together
    across the dance floor
    we call the universe,
    pulled and driven
    by a mysterious force
    that links us to the same
    amazing journey.”

    From: The Geography of God’s Mercy

    God Loves You and so does your family and friends. Rely first on God; then everyone else.
    Love and Praying for You
    Aunt Brinda & Uncle Tom

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