382

Three hundred eighty-two days....I think about the last year and I still can’t believe the ride it's been.  

382 days ago I was fine.  And then I wasn't.  And it was very serious.  Then mere weeks later we got the thyroid eye disease diagnosis.

This back surgery seemed like the ultimate middle finger salute. I had just got amazing news at Vanderbilt and not even 24 hours later, I was (literally and figuratively) knocked back down. But, it forced me to finally truly rest and let my body heal from the hard treatments and harsh medications.  382 days of trying to stay ahead of the next crisis. 

I have fought so hard to get to this place. No short cuts. No magic pills.  

And y’all. I feel so good. It's weird to me how truly good I feel.

I don’t have pain. I’ve been walking over a mile a day to regain my strength. I don’t need naps after a day of normal activity. My eye is better every day. I cut almost 4” off of my hair. I got new glasses. I bought eye makeup for the first time in a year. 

Tomorrow I return to work.

And I can’t wait.

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.

Progress!!

A few days ago we were back at Vanderbilt to check on my progress since the IV steroid infusion treatments started. I’ve had four infusions (I have 2 left at the current dose then 6 at a lower dose). 

Both doctors and all of my tests point to significant improvement! The infusions are reducing the inflammation which has shrunk the eye ball back to an almost normal size, moved the eye up for better symmetry, and MOST IMPORTANTLY... the pressure on the optic nerve has been relieved. This was the largest concern since that little nerve makes or breaks your ability to see. I’m a tangible person so while I tend to use what I look like as a guide to what’s going on, it really doesn’t matter if that nerve is still compromised. 

Unfortunately, I remain in a patch. The double vision issue is muscle alignment which can’t be fixed with a prism (actually, it sounded like it could be fixed but it wouldn’t last long since everything is changing so much). Needless to say, I am pretty disappointed. We discussed radiation treatments and/or muscle surgery to fix the double vision but it is something that has to wait. 

The plastic surgeon said she is delaying surgery for 6 months unless something changes. I was very clear to her that we’d prefer surgery to not be an option. I told her that if I looked like this the rest of my life (minus the patch, of course), I could accept that. I was pretty clear that I have no desire for her to remove bones from my face. She said “fair enough”. I was sure to tell her that we have until January to get me as normal as possible because I have zero desire to look like a gargoyle in the wedding photos. She laughed and accepted the challenge. We will go back at the end of September and see where things are...hopefully it will be another appointment filled with good news!  I'm claiming it as fact now!

I met my new hematologist Thursday. We had some really good discussions about this whole situation. His preference is that I remain on blood thinners for the rest of my life. I am not necessarily opposed to that but also don’t want such a complicating factor attached to me forever, either. Lord knows I have enough of those as it is. We compromised with a full pulmonary embolism work up in 6 months to confirm that all of the blood clots are gone and we will reevaluate.  However, I've since seen my pulmonologist as well and she also wants me on blood thinners for the rest of my life.  So, it would appear I am going to lose that battle.  Which, I know is the smart thing to do.  Just kinda sucks ... blood thinners are no joke and really complicate things.  

park bench selfie waiting on them to bring our car 

he's still so sweet and patient with me, even when i don't deserve it

The stress and side effects are starting to catch up to me. My face is rounding out. I didn’t lose any weight this week. I’ve started to cry a lot. I scream at other drivers a lot. I snap at my family. I don’t laugh. My brain never stops. I can’t be pleased. Saturday we moved our girl back to school and I’ve been a mess since. Steven’s class reunion was this past weekend and I sent him alone. I just couldn’t find my “fake it till you make it” mojo. 

This too shall pass

This is only a season

Count your blessings 

It’s not that bad

Praying for those words to settle in my heart and replace the medical misery. I’d appreciate your prayers, too.