Radiation & Vandy Update

I’ve written and deleted this post countless times.

The bottom line? Radiation was terrible.

What was not terrible was the support. So I’m going to leave the crappy details out and focus on the awesome. (There is an actual medical update at the end...I didn’t keep y’all waiting for a month a half just to read about how well I am loved).

-I had someone there with me every single day. Gary (my boss and very dear friend), Steven, my parents & my sister Carol all made sure I had a smile to see and a hug to receive when I was finished. Start to finish I wasn’t there more than 20 minutes and it seemed silly to have someone come all that way for 20 minutes. Until I had my first treatment.... Thankfully Gary insisted he come that first day. (If you choose to scroll down and see the photos you might understand why I needed a hug). I underestimated radiation. I put out a text and it was handled for all 10 days.

-I had a card to open every morning. Carol had 10 cards prepared & labeled with which day to open it. This girl didn’t just sign her name to a Hallmark card. Nope, these were the blank inside cards where she wrote Bible verses, jokes, inspirational quotes, weird hashtags, and a thoughtful, day specific encouragement note from her. The time & energy it took her to do all of those for me....sheesh!!

-When I got to work each day after radiation, I had an encouraging note from Vicky (we share an office and she’s my pal) laying on my keyboard!

-Chloe (my niece), Kennedy & Tania (Arissa’s best friends) spent several of their Sunday’s with me doing anything that I needed to make my week go easier. With their help, I’ve been able to still meal plan and prep meaning I’ve stayed on track with my diet. HUGE stress reliever!

-Beka (another office pal) made me a radiation countdown and affirming words board. She got me the prettiest “you did it!” celebration flowers my last day, too!

-Steven got me through with his strong shoulder, usual humor and a dozen roses that second week when I hit the wall and melted down.  He took me to Lakeside Tavern to celebrate, too!

-My incredibly understanding and supportive work family made this so much easier.  I never worried about the time missed or the work that had to be done.  They cheered me on, picked up my slack, and tried to down play the way I looked each day (for that I am so grateful because that part was really tough on me).

Side note.. this whole thing may have been so hard because I was also dealing with my back. I have now received 2 lumbar injections and finally got relief a few days before Thanksgiving. Sadly, this was after I was done laying on a hard table every day. Miserable is an understatement.

But! We DID make it through, I graduated and got a souvenir mask. The mask is now hanging in my living room and will be wearing season appropriate hats for the foreseeable future.

                        

Now—-what we’ve been waiting on. Did this work? 

As of Friday, nope. It sure didn’t. 

And things are getting worse instead of better. I DO have single vision and therefore have 2 eyes most of the time these days which I am very grateful for! However, the tests that matter show I am not seeing everything and my eye is still “smooshed”. I was told that we would have to see a positive change in January or we will have to move ahead with the surgeries we have been fighting to avoid. Radiation continues to work after treatment ends so we are praying for a huge change in the right direction when we go back to Nashville. 

That mustard seed faith .....

Photos below may be tough to see.  I've had several in my village choose not to see them (totally understandable).  If you don't want to see my face after treatments or me bolted to the table then your visit to The Pod ends here.  They aren't gruesome but hard to see when it's someone you care about. I've added a bunch of space so scroll down for the photos.

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.....