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.

hfh

2013: Part 2

How It’s Been So Far

I never got stronger in 2012, although I loved our two big road trips in March and May.  I also made it to Big Island; and I spent Friday of Labor Day weekend going from swimming in the ocean by the Mauna Kea Hotel to watching the sun set and the full BLUE moon rise from somewhere above 10K' on Mauna Kea itself. 

I could tell the decline in my strength as I swam and snorkeled, and one day I barely succeeded in pulling myself out of the sea at Two Steps.  Argh!  I ended up coming home in a wheelchair, and had to walk with assistance thereafter. 

Unknown to us, my body had started shutting down.  In September, digestion was stopping.   We noticed my singing voice was weak in March, was totally not right in May, worked in October, and then . . . went away completely.  I have even been unable to sing along with the radio.  Frustrating!

So not only did I not do as well as I'd have liked in 2012, 2013 was starting off TOUGH. 

January's tests revealed cancer still in my brain and spine, and by February my body was sliding into end stage.  High heart rate and low BP, high tumor markers, cachexia, choking, an inability to swallow or breathe properly, and so forth.  At one point, my legs and feet were purple.  I looked near death, and everyone was so worried and stressed, especially during the lengthy episodes where I couldn't breathe.  It became obvious my autonomic systems were not working properly.  We’ve spent from February on dealing with that.

By April, I could no longer walk far with my walker, and we bought a wheelchair.  I’ve had to use it ever since, except for the short walk to the bathroom (for which my walker suffices).  So 2013 so far has been spent on the sofa for me.  It’s boring; I’d rather be hiking.

And that's how it went when I wasn't here blogging!

2013, Part 1: Hello Again

It has now been more than 3 years since I was diagnosed with leptomeningeal carcinomatosis (LM). I know other LM patients and caretakers watch this blog, and I wish I'd been able to keep up with it this past year. I've only been able to focus on the most basics of living . . . getting to appointments and doing all we can to keep my body and my brain going. We've had to deal with A LOT of symptoms; I've not had remission.

I was further frustrated by changes made last May to blogger's software. It's getting harder for my brain to keep up or do multiple steps. It's not dissimilar to how we might feel after a couple of margaritas – I'd rather relax that try to do “work” tasks with my brain. I'm learning to be still.

I'm going to try to work around the problem(s) by handwriting my entries and getting help with getting them posted.

We'll see if that works. For now, know that I am still alive, still here, still going! hfh

Southwest Wanderings: Day Two

Wow!!! (Our Aching Jaws)

Saturday, March 31

~230 mi from Glenwood Springs through McClure Pass
and along Crystal River to Ouray and Durango

I'll finish this up when I can!

My morning view from the motel.

Heading south.

Following the river.

es.