I continued to experience a
decline in my overall health, and an increase in paralysis on my left
side. By late May /early June, I had
terrible head pain, ran a temperature, and slept most of the time. I could no longer walk but a few assisted
steps; we bought a potty chair to prevent bathroom falls. I can’t see through my left eye, and lost
even more facial muscles on the left side.
On the scale used for assistance, I could no longer shop, bathe myself,
or prepare food to eat. I am very
dependent on my caretakers.
So by May’s end/June’s
start, it was obvious I was dying and the family flew to see me.
My primary oncologist was
scrambling to deal with a variety of symptoms, especially my declining ability
to breathe or swallow. We turned to
specialists for help; the ENT specialist
used a camera on a tube to diagnose me with paralyzed vocal chords. No wonder I could barely talk! He also said it was causing the
choking/aspiration/inability to breathe.
It needed to be addressed ASAP.
In the second week of June,
we were headed home from an intrathecal treatment through my Omayya reservoir
when my caretakers got an urgent text from my primary oncologist to pack my bag
and head back to the hospital – I’d just been diagnosed with bacterial
meningitis from an unknown bacterium, as well as sepsis from—not one, but—two
unknown bacteria living IN my red blood cells.
No wonder I’d been ill! And thus
began a week of hospitalization followed by 15 weeks of in-home nursing care, all
spent hooked to IV antibiotics 24/7.
Well, there went my Jacuzzi therapy and summer swimming!
While hospitalized, I was
again subjected to the camera-down-the-throat and and diagnosed again with
paralyzed vocal chords—only this time, I was told I could have NOTHING by
mouth, neither food nor liquid, because of the aspiration. I immediately
rejected that and continued to eat as I could (soup, liquids w/ thickener
added). After I got out of the hospital,
I went to an amazing doctor (Dr. Andrews) at a world-class facility. He did surgery on me in early July (while I
was awake) and ameliorated the problems the paralysis was creating w/my vocal
chords. I still can’t eat regular food,
but at least I’m not aspirating so much now and the choking/not breathing
episodes have dramatically decreased.
I’ll write more later; much gratitude to my
caretaker G for typing it up for me so I can post and update y’all.
hfh
