Thursday, October 15, 2020

Four out of five granulocytes transfusions completed

 First off, thanks to all of you who reached out over the last few days, but I didn't reply to at all. I was barely able to look at my phone much of the time (but I'll get to that), but I read them all in bits.

Today during my MRI (I'll get to that, too), I tried to get through it by writing my next blog post in my head. And then I got back to my room and was visiting by the doctor on rounds this week (Dr. Michaelis), who is wonderful, but told me something. She told me that she knew that all of this stuff with the granulocytes was extremely stressful and that it hits at the core of our "fight or flight" response. But she needed me to stop obsessing (that's not what she said) about everything about this treatment--counting and self-rationing meds, worrying about fevers, etc. And she said that I should trust that my team is on top of things and they will let me know when they need my input. She also said that I am, despite these big set-backs, a very healthy person (my heart, lungs, kidney function, etc.) and that the granulocyte transfusions seem to be working. I should trust in the process. Also, I should use the meds that are available to me and not suffer.

So with that being said, I'll work back to my difficult couple of days. First of all, it was finalized that I would receive a total of five granulocyte transfusions. The first two (Friday, Monday) came from one donor, and the other three (Wednesday, Thursday, Friday) will be from a different donor. Each has had an expected arrive time, and they've all been wrong. :) It just makes it a little hard to plan things like other IV meds when they're expected at 3:00 but don't arrive till 5:30.


I described in detail the Friday infusion. The others (so far) have not been that intense, but have been more "classic" granulocyte transfusion reactions. For me, that means high fevers and rigors. I've gotten enough pre-meds (after the first two times, they added a steroid) that the actual infusion goes fine. But afterwards it's a mess of fever-med-fever-med cycling. Every day we learn a little more and are better able to deal with it, but it has left me with days where I'm either feverish and really uncomfortable, waiting for the next dose of meds, or I'm doped up because I just took meds. So I've been out of contact quite a bit of that time. I will probably be mostly out of contact the next few days, too, as this all works through my body. But I am hopeful that it is working, and grateful for the medications that allow me to handle it all.

Last bit on the MRI: I woke up Saturday with a very sensitive spot on my left ankle where it meets my foot. It hurt to even wear socks! I mentioned it on rounds, and it came up again the next day. So to "rule out that the fusarium has impacted the bone," I got an x-ray of that ankle. It didn't show anything definite, and had some comments about possible previous trauma (I'd sprained it before), but I wasn't worried. Then yesterday the who thing was again sensitive, but the area was reddish and warm to the touch. Thus the MRI. I don't have results from that yet.Essentially I'm just hanging in here, taking it one day at a time. I'm trying really hard to relax and just get through. I've been using some meditation and some essential oils. And I'm also really happy that tomorrow is my last one of these. :)



6 comments:

  1. Your medical team seems so competent and wise. . . really good advice they offered about how you can trust them and they will do right by you. So glad that this process is working!! And is almost over. Hope you can do something that gives you pleasure to celebrate. Can you convince someone to let you have take-in again? Keep up your superhero strength, Lori, and we all will keep believing in your complete recovery in time.

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  2. What a traumatic ordeal. I like what your doctor said to you- that is incredibly encouraging for you, your family, and all of us who care about you. Your exercise routine made your organs strong, but your inner strength is impressive too. Hang in there- you’ve got this! My prayers continue.

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  3. You are so courageous. Your strength is what carries you through. Your Dr.'s clearly believe in you. I watch from afar and pray for you every day.

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  4. It’s so difficult to lie back and trust when you have so much knowledge and know self advocacy is SO important! So happy to hear the transfusions are happening and the process is one you can grapple with. ❤️

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  5. So glad you & Laura finally met!❤️

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  6. Sending positive vibes! We’re all pulling for you. I can’t wait to hear when things are getting better for you. Real soon!

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