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.

The Plan

I met with my local radiology-oncologist Friday and I am very happy with the staff and the doctor. He explained the process, we discussed my fears & struggles, he wasn’t dismissive or rushed, and was easy & pleasant. I know they will take very good care of me. That helps.

I will have my mapping appointment on the 23rd. This involves another CT and making a radiation mask. I will return (likely) the 29th and will do so every weekday for 2 weeks for treatments. The sessions last only 10-20 minutes and I’ll go to work afterward. We are not expecting results for 4-6 weeks after the treatments are over. The radiation dose is less than they use for cancer treatments so the side effects shouldn’t be as bad. I’m grateful for that.

I’m glad to have the steroid infusions behind me and look forward to the side effects to dissipate. The weather has suddenly changed but my feet won’t go into my close toed shoes! So I’ll be rocking my summer kicks looking like I don’t know the seasons have changed. I only gained 7lbs over the 12 weeks and I know without a doubt, it’s all fluid. I will certainly miss the energy they gave me but I doubt Steven will miss motor mouth Thursday’s!

We return to Vanderbilt next week. Since I declined so much between the last two visits they need to check on things sooner now. I’m hoping we’ll get a longer break this time; the trip and appointments are exhausting. But the time with Steven...*swoon*.

This has hit me kinda hard and my village has certainly rallied. Sweet reminders have came at the most God timed moments that I can do hard things.  You guys are amazing....I am so grateful for all of the messages, texts, cards, and especially the prayers. 

Hey New People!!

I've handed out my blog info several times lately so I wanted to pop this post up to the top for my new readers.....

Click Here New Visitors!

As far as any updates....I've got nothing right now.  I am in a holding pattern waiting to hear from my local radiation oncology office to get things started.   I will be sure to update as soon as I have something to pass along!

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. 

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.