More Leukemia, No Vision Improvements

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I really can’t catch a break, can I?

My latest BCR-ABL blood test that detects my cancer’s genetic mutation came back ever so slightly positive (like 0.01%). This isn’t a relapse but rather just some pesky cancer cells that refuse to take a hint.

To treat this, I will be taking a very specialized drug called Blinatumomab. It’s administered as a continuous 28 day drip which means I’ll have to carry around a portable IV pump. I’ll then get a 2 week break before a second 28 day infusion. If I’m disconnected from the pump for more than 4 hours, I may have to start the whole 28 day cycle over again. What a pain.

This Sunday I’ll be admitted to the hospital for 3 or 4 days of monitoring to make sure that I don’t have any negative reactions to the medication.

As for my vision issues, depressingly there hasn’t really been any improvement. If anything I’ve gotten more blind spots that make it hard to see things that I’m directly looking at.

I’ve been unable to work or drive, both of which I desperately want to do. I’m having a really tough time with the thoughts of things never improving past where they are now.

9 thoughts on “More Leukemia, No Vision Improvements”

  2. At this point I’m sure you’ve heard all the platitudes you can bear. This down right sucks. I wish I could help in some way. I am always thinking about you and sending good vibes, and prayers. Just don’t give up, have hope, be strong. Positive thoughts and optimisim is what you need. Keep it up .

  3. Jessie said it perfectly. Know that we’re here to support you, feeling the feels, and will continue to be there along your journey with you. Keep sharing your story Alex! Hugs 🙂

  4. Just discovered your blog and the medical issues you’re having, via looking for more info on one of your plugins.

    As noted above, this sucks. All of it. And, I have no cheery words of uplift to share, as I’m sure you’ve heard them all.

    The only thing I can say is, a stranger you’ve never met is thinking of you right now, and is {{sending warm thoughts || praying || asking the universe for better days for you || take your pick || all of the above}}.

    Will subscribe, just so I can continue doing whichever of the above you chose. 🙂

  6. Oh, Alex. Dang. Such a bummer to hear this. Hope that the drip(s) works wonders. Rooting for you from North Carolina – hope to see you again soon.

  7. Alex! Hang in there man. When this is all over, we’re going to have to get you to a Barrett-Jackson car auction and get you a nice ride to whip through the mountains in.

    We’re all here for you dude.

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