Tuesday, October 15, 2013

Spring and Summer 2013, Part 1

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.


ayesha said...

gud to hear from u...hope u get well soon and have the best of health...i lost my mother to this evil evil leptomenengia thing and i am just so amazed and inspired by u and how u r fighting it...keep it up and beat this evil disease... i keep on checking back for ur blogs...

Anonymous said...

I'm always checking in on your blog from Norway. It is good to hear from you! I wish you all the best!