When the wind is knocked out of your sails....Find your mustard seed

Friday we went back to Vanderbilt to meet with my team.  Here is what I 100% expected would happen-- things are still improving, my vision isn't decreased, eyes are working well aside from the lingering double vision, finish these last 2 infusions and see how the double vision settles out, come back in a month and we'll go from there as far as radiation.  Have a great weekend, Mrs. Freeman.

Here's what actually happened when I started my pilgrimage down the hall and in and out of rooms--

Not as bad as before treatment started, but definitely decreased vision in my left eye.  The field vision test that I have aced every single time (even before treatment started and my eye was really, really bad) had marked changes.  My pupils aren't reacting evenly.  As I'm taking these tests and seeing the difference in lights shone in my eyes, I sunk.  I could tell where this was going.  I knew this wasn't going to go how I thought.  Once again, surgery was made to sound urgent.  I bit my lip looking at Steven, who locked eyes with me.  I think we were both stunned.  I tried to make my lip stop quivering.  Sat myself up straight and made a point to look my doctor in the eye with a strong look of determination.  As we walked out of his room to wait to see what the final decision would be, the wind in my sails fluttered away and I sat in the chair next to Steven, put my head on his shoulder and quietly cried.  I'm not sure I've ever cried in a waiting room before...I guess there's a first time for everything.  I just couldn't believe things weren't as good as I thought they were.

We waited for the first doc (Dr.L; the neuro-opthamologist) to talk to the second doc (Dr.S; the ocular plastic surgeon) to discuss the next steps......

I'm pretty sure I have the only surgeon that doesn't want to actually operate because once again, she has a plan to save my vision and keep me out of the OR.  We are upping my last two steroid infusions back to the full 500mg.  I am referred to Radiology Oncology for radiation treatments.  She sent me for a CT of my orbits before we left Nashville & I have a return appointment in only 3 weeks. 

There are a few caveats though..one being my liver function test results.  I had them drawn Thursday as a follow up to labs ran 4 weeks ago that showed elevation.  If the LFT is too high, no more steroids.  Also, I can't have radiation while "diabetic" so we have to wait for the steroid infusions to end before we can begin.  I have more questions than answers as far as the radiation goes so I don't have much to tell y'all except that it is 2 straight weeks of daily treatment.  Please pray this can be done locally; this having to be done at Vanderbilt would create a HUGE issue on many fronts. 

I asked how things can be so bad when they look so good?  Inflammation is what compresses the optic nerve--the inflammation is clearly reduced. He said it is likely compressed in the back.  The radiation is supposed to reduce this inflammation.  Studies show that steroid treatment along with radiation typically has as good of an outcome as surgery.  I am still not a great surgical candidate and I really really really don't want surgery.  But, I also really really really want to see well again.

So....I reach for my mustard seed.  I'll probably wear it more often than not.  I'll fiddle with it and I'll remember.....

Bum Rap

If you knew me you would know I'm just a person, doing the best I can with what I've got, and with what I've been given.  Maybe it's a bum rap, and maybe it is actually the greatest opportunity I've ever been given.  I think it's probably a bit of both.  -Lisa Bonchek Adams

Every day I put one foot in front of the other.
Every day I take the hands full of pills.
Every day I know that there isn't an alternative to this life I have been given.
Every day I look in the mirror, don't recognize who is looking back at me, but put on my makeup, jewelry and try to make myself look as much like me as possible.
Every day I am thankful that I have the resources that I have.
Every day I am grateful that while I have really significant issues, they likely won't take me from this Earth.
Every day I remember that no matter how heavy my load is, there are others who face much worse with dire consequences.

That doesn't mean this is easy.  That doesn't mean I don't struggle.  That doesn't mean it's okay to make pirate jokes or to make comments about my appearance.  This shit is hard enough without feedback from people that have no idea how hard I fight to function every day.  And I don't just function or barely get through each day...I have a very active life that I have to make a conscious decision to participate in.

Some days this whole deal just aches in my heart.
Some days keeping track of everything is too much.
Some days I shed tears over the enormity of all I juggle.
Some days I wish I could wear a sign that with my long list of crap I have to deal with so people will know I have really good reasons to be short tempered or not in a great mood.
Some days I just pray that I'll make it through the day without saying or doing something that I can't take back.

The steroids are wreaking havoc on my body.  The latest development being a diagnosis of  medicine induced diabetes.  I now have to check my blood sugar twice a day.  I now have to modify my already modified diet.  I have to read labels differently, track my foods more accurately, track my macros more carefully.....my brain just doesn't get a break anymore.  I am constantly planning, brain storming, making lists, researching.  It never stops.  Never.  And it's exhausting.

We met with a dietitian, we have a treatment plan and this will eventually be second nature to me just like everything else I've had to adjust to over the years.  But honestly...right now, I'm pretty bitter.  There is hope that once I am done with the steroid treatments my body will chill out and the diabetes will resolve.  I'm also realistic...I know my body.  I know my luck.  I know how this will likely end.  And I know that in all likely hood, this is my new forever.  And I know it's not the end of the world...it's just another big thing on my plate that was already stacked high and wide.

I don't write these words for replies, sympathy or pity.
Sometimes I just need to write my feelings out so they don't fester and consume me.
Sometimes writing and sharing is better than quietly crying while the house sleeps.

Sometimes after I write it all out I look back and think...suck it up, buttercup.