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A.W.O.L. - With Reason

Tags: rule sleep taste

As some of you may have noticed my contributions here stopped/stalled some time ago as I left this endeavor to my angel of mercy. She has done a terrific job of keeping you-all updated while my attempts at updates became, well, problematic. As my health improves and with so few things I'm "allowed" to do there's far too much time to think back on the past 7 months. My attempts to make an update have all been emotional jumbled up incoherent messes. Perhaps today will be different as I have reached a better level of stability to chat in more detail about this crazy journey.



Things that can trigger (many you've heard already):
⦁    Thinking/talking about those first 3 weeks between discovery and my first 'incarceration'. Knowing that the first week the Docs knew but we were still in the dark, only knowing something was up but not what. Then having to wrap our home, work, and lives up in just 2 weeks for a month-long absence while also juggling appointments both local and 3.5 hours away. We were more numb than emotional, now the reverse is true at least for me.
⦁    That first month was what they call Induction Therapy. Basically chemo to knock down the bone marrow in the hope that the misbehaving newer marrow gets evicted while preserving just a smidge of my 'good' marrow to rebuild. This month was, really, the worst. Cooped up in a tiny room where only Wendy and the nurses and Docs were allowed to visit. I am no social butterfly and can manage alone time as well as anyone but this month was almost too much for even me. Perhaps it had something to do with isolation, perhaps it was sleep deprivation and chemo lag. Speaking of sleep, the first 2 weeks I was never able to sleep for more than a couple hours without someone 'needing' to wake me. Then I staged a revolt, talked to my NP and to the head nurse and managed to get a compromise that would allow for a couple 4 hour sleep segments during the night. 
⦁    Induction included the bonuses of baldness and taste bud short-circuits. When I say baldness I mean BALDNESS. There are only a few hairs left anywhere on my body and I can at least empathize with those with alopecia now as that happened at the end of June and is still the case today. Starting in the third week of June the taste buds just ..... stopped. Everything tasted like wax or cardboard. While the nature of it has changed now and then (transplant brought them back some but everything tasted wrong and bad) it was only in the past 2-3 weeks that they have started to turn around. I wish I had the words to express what happens when I find something 'new' that suddenly tastes right. It's much like an uncontrollable emotional episode. The first was a simple cinnamon raisin bagel and I was driving. When I took the first bite it was so overwhelming that I had to immediately pull over and stop for a few minutes while it worked itself out. In the last few weeks there have been a dozen or more instances much the same. I now know to try new-old tastes sitting down, not driving.
⦁    Hospitals and care centers take COVID very seriously. And for the most part very screwy with conflicting rules and procedures that, fortunately, the staff sees through for the most part. Every institution had different rules from the rest and some institutions had different rules wing to wing. Some places just took a temp and sent you on, some took a temp and asked questions, and one place had 3 check-points to get through all doing/asking the same things. As far as within a wing, the nurses were kind enough to stretch rules that were confusing and ignored most of the senseless rules. They did follow the sensible rules pretty much to the letter keeping us as safe as possible.
⦁    Oh the drugs, the ointments, the supplements, and shots. I now have my own pill minder (I am MUCH too young for this) and the professionals keep believing I'll manage to memorize all of the names and purposes of this potpourri of chemical mush that changes weekly. I am even MORE determined to not memorize any of it with this chemo brain that mixes everything up like a great big grab bag. I keep my pill reference and refer to that for all answers. When I remember, that is.


That's good enough for the re-initiated posting. More to come, maybe enough to makie you wish I'd stayed scatter brained. Or maybe I still am and just don't realize it? Would it be  bad if I lost awareness of the jumble brain and just wrote anyhow? 


As always, thank you for following our journey, for all your love and help, and for your prayers. Without those and God's care and reassurance we'd have surely gone crazy by now.





This post first appeared on Strangely ORdinary, please read the originial post: here

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A.W.O.L. - With Reason

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