Sunday, March 31, 2013

Happy Easter 2013!

After an early rain, I was so thankful for a beautiful Easter Sunday! With Easter being so early this year, our Dogwoods bloomed perfectly in time. I love how they depict the blood tinged cross of our Savior.

We started our day with the most beautiful worship service this morning. Afterwards, the girls participated in the flowering of the cross.  I love this tradition.

Then we headed home for an egg hunt with my niece and lunch with the grandparents.

And...they're OFF!

It felt so good to host today's festivities in our home. It has been a while since I have felt up to that! And I have to admit my mom still did most of the food... ;) My only contributions were fresh lemonade, fruit salad and this super easy coconut pie.  Mom did pulled pork and all the fixins...delish! Plus the grandparents went to our house before we were home from church and hid well over a hundred eggs. Then they left and magically appeared right after we pulled up so it really did seem like the Easter bunny had come. ;)

The Lord used these people, along with many friends, to truly carry us along over the past few months.  I missed getting a pic of my sis. :(

My in-laws, aka Memmy and Paw, above. My parents, aka Gramma Jean and Papa Dean, below.

I also missed getting pics of our confetti egg fun because I was too busy getting attacked! Lots of mess left to capture though.

Hope your Easter was a blessed day...He is risen...He is risen indeed!

Thursday, March 28, 2013

Grandparent's Day (including 6 wk post op pic)

Our Easter break officially started today with a fun event for grandparents at the girls' school.  Lily was especially excited because she was the only one in her class that had two sets of grandparents coming.

But then the phone rang...Jerry's mom, Memmy to the girls, was sick and they weren't able to come. Boy did the tears flow.  It was so sad.

They did cheer up in time for the program.  Lily's grade recited Psalm 121 and then sang 50 Nifty United States.  Jade's grade sang the cutest timeline song. She was the "woman of progress". Then we visited their classrooms where they got to show off some work and introduce their grandparents to their teachers.

So thankful for grandparents! (My parents...Papa & Gramma aka Papa Dean & Gramma Jean!)

Missed you Memmy and Paw!

Silly Daddy!

 Here I am at 6 weeks after surgery. I feel great!


Still hoping my left eye will relax some. Both my neurotologist and ophthalmologist mentioned that usually the eye on the side of the surgery site would be more droopy than normal...but mine is opposite. Weird! Not a big deal...especially since I can look back at old pix and see that some asymmetry was present before surgery too.

I often look at the clock on these weekly anniversary dates of my surgery. It was around noon today when at lunch my dad said something to the effect of how it was hard to believe where I was at this hour 6 weeks ago. Yep. I guessed I was about 3 hours in to surgery...probably the neurotologist had just finished his part and the neurosurgeon was beginning to resect the tumor.

Even as I type this, I think back to 6 weeks ago from this hour. I distinctly remember awaiting a 1AM cat scan to check for bleeding on the brain. Y'all prayed...and He answered. So thankful to be on this side of it now. Part of me wondered back then if I would be up to attending something like Grandparent's Day at this point. Though some friends were surprised to see me there, I was definitely up to it and so glad for that!

I hope your Easter weekend is especially good.  I know this one will be special for our family!

Wednesday, March 27, 2013

Acoustic Neuroma - 6 Weeks Post Op

It is crazy for me to think that tomorrow marks 6 weeks since surgery. That means Valentine's Day was 6 weeks ago people!  Do you still have candy hanging around like I do?!? {Time to throw it away...the Easter candy is coming!}

I have been slow with posting about how my journey with acoustic neuroma began...hate that...but since I started driving again, life has been full throttle! So I thought I would just give a brief (probably will turn out long, sorry!) current update instead. ;)

In short, my answer to the ever present question of, "How are you doing?", is, "Well, very well."

As I mentioned, I AM DRIVING AGAIN.  That alone is a huge milestone and answer to prayer. Since my update at one month after surgery , driving is probably the biggest news.  I started to drive out of necessity when my in-laws needed to leave town. And you know what? It was fine.  I was fine. My kids were fine. I even made it through the craziness of a carpool line traffic pattern change at the girls' school. I did get a few raised eyebrows, like, "you're driving again?!?"...funniest from the headmaster, but again, all is fine! Friends are even letting me drive their kids around again. To me that is the biggest sign that life has returned to normal. ;) And after 5 weeks of not driving (very humbling, and honestly just a pain!), this new normal is a very welcome change.

Let's see...let me go through the list, as I know many of you have been praying for me. Thank means SO much.

Dizziness/vertigo? None. Sleep? Completely normal long nights! (when I go to bed at a decent hour at least). Hearing? Well, still deaf on L side. ;) Energy levels? Much improved. Headaches/Clicking noises in head? Much less noticeable.

What is still hanging around?

Ringing in left ear? Yep. This is so weird to me. I really do not understand it. At the risk of seeming dense, I will probably not ask my doctor again, but I could really use a full blown audiology class when it comes to tinnitus in a DEAF ear. *sigh*

Neck muscles still tight from surgery? Yep. My surgeon (will introduce him in later post...great guy) did call me in a refill for a muscle relaxer (over a weekend, no less) and I did go get a massage last week (total splurge, but well worth it!). My neck felt great for several days and I wasn't popping Advil or muscle relaxers. While I am still not popping meds, it just does not feel great anymore. Hoping time will remedy this.

Issues with left eye? Still present, but being treated. My ophthalmology appointment last week was pretty uneventful. After worrying about dilation (you would have too if you had witnessed Lily's reaction!), and arranging rides, etc for us because of it, the doc didn't even end up dilating me. I was relieved, but sad that I had called in the help 4 friends (FOUR!) to replace my in-laws that morning. Not kidding.

Basically my left eye is "moderately to severely" dry. Lots of dead skin cells present, so that is why she did not dilate. Apparently dilation causes more dead skin cells to form...just temporarily. She recommended placement of a punctal plug in the lower lid of that eye to keep the tears in my eye longer. I was apprehensive about this, but went ahead with the procedure and it was NO BIG DEAL. After watching a YouTube on it though, I am very glad my eye was numb. When it was all said and done, I went home with 3 meds for my eye...a steroid drop (will the steroids ever end?!?), a rewetting drop, and a nighttime ointment (that one is just plain weird to use...blurred vision). I also get to wash my eyelid daily with Johnson & Johnson baby shampoo...I guess it really is "as gentle to eyes as pure water"!  I follow up with the eye doc in two weeks to assess my progress. Though she thinks I will probably be dealing with "dry eye" from here on out, it really doesn't seem like a big thing to me...especially considering the reality of much more troublesome complications that I was spared. Praise the Lord!

See, it ended up being a long update. Sorry! I do want to leave you with an encouraging word that the ophthalmologist left me with.  She has been in private practice for over 20 years...after training at UTSW where my surgeons work. Anyways, she looked me in the eyes and said, "Kerry, you are the best looking acoustic neuroma patient I have seen. Usually I can spot an acoustic neuroma case at the door, but it wasn't until I read your chart that I even knew. You realize that this is a 'God thing', right?".  Yes, ma'am...I DO. Thanking HIM continuously.

I might be taking this out of context...should have asked my hubby, but I am enjoying Psalm 107 this morning...this one part in particular. 

19 Then they cried to the Lord in their trouble,
    and he delivered them from their distress.
20 He sent out his word and healed them,
    and delivered them from their destruction.
21 Let them thank the Lord for his steadfast love,
    for his wondrous works to the children of man!
22 And let them offer sacrifices of thanksgiving,
    and tell of his deeds in songs of joy!

I am so thankful to be where I am today. I couldn't have imagined feeling this great so quickly after that monster of a surgery. Praising Him.

Saturday, March 23, 2013

Rainy Day Breakfast Fun

Today has been a welcome change to a *possibly* over-scheduled life.

Cold and rainy weather caused 2 soccer games and one outdoor birthday party to be cancelled.

Which meant we all lounged and didn't even eat breakfast til 10:30! It also meant Mom had time to do more than throw some cereal in the girls' bowls.

I had fun with these pancake and egg molds.  I think I found them at a kitchen store in Natchitoches, LA during this trip. It's sad I haven't used them more often in that many years!

Anyways, who says breakfast can't be sunny on a rainy day?

Hope your day is off to a great start!

Wednesday, March 20, 2013

Initial ENT Appointment - Acoustic Neuroma Part 2

On Wednesday, 11/28/2012, Jade and I made our way to our friend's ENT office. Though Jade is in Kindergarten, it is only part-time.  Thankfully she is a great little companion...even to appointments like these.

Tim had kindly put us down for 1:00 PM...I always like those "first after lunch" time slots. Usually no wait, right? Ha! Not always.

They pulled me back pretty quickly to do a hearing test with the audiologist. That was a crazy experience. As I sat there, with Jade actually IN the booth with me, I couldn't help to think back to the countless times I sat in a similar booth with each of my girls.  Both of them having chronic ear infections as itty bitties, I had held them on my lap many a time at their pediatric ENT in Coppell. Only this time it was me. And there weren't any little rubber duckies spinning and lighting up in the corner.  Just a test of different pitches and then a word test.  The word test was hard! It was during that section on my left ear that I knew something was wrong.

I can't even remember the audiologist's exact words. Something to the effect that I definitely had a measurable hearing loss on my left side. In my mind it didn't register though. Not being aware of the different types of hearing loss, I was thinking temporary...due to fluid or allergies or something else that posed no real harm. But then I remembered she had said there was no evidence of fluid in an earlier test. Hmm. But me, always wanting to lean towards thinking there is nothing wrong, smiled at Jade and walked back to the waiting room, really not worried at all.

And then we waited. I felt so bad for Dr. Thomason.  Patients were arriving much faster than they were being called back. Oh the stress of knowing your waiting room is filled to the brim while needing to give undivided attention to the patient at hand. Doctors can keep their paychecks! I am just fine with folding towels and planning meals that hopefully the hubby and kids will both like! ;) Anyways, I guess his "first after lunch" case was something serious and took over an hour for just that one patient. 

Jade and I didn't know what was going on. After a couple of hours of waiting and having already called in a favor to get Lily picked up from school, I decided I should reschedule to a day when Tim wasn't trying to work me in.  As we approached the front desk though they assured me they now had a room ready for me.  Hmm, I thought. To me the "room" was just a smaller waiting room without the TV, but with the addition of so many things that Jade would find interesting to explore. I think they felt bad because I was a personal friend of the doc, but I assured them I was not all...and that I should probably just reschedule. All I could think of was getting back across town, retrieving Lily from my sweet "go-to friend", homework routine, dinner and then Lily's basketball practice that night. And then the nurse called my name...

So, back we went! Tim appeared immediately (score!) and apologized about the crazy wait explaining that his first case was unexpectedly complicated.  He asked me what was going on and I started telling him about the moisture and itchiness in my ears. He told me what it was (I can't even remember) and also mentioned some drops he would prescribe to help. Then I told him about the humming in my left ear.  His countenance changed a bit and just then the nurse handed him my hearing test. As he reviewed it, I knew this was a game changer. He seemed concerned and mentioned needing an MRI..."just to rule some things out". That is when I learned my hearing loss was most likely permanent. What?!? I tried to keep myself together...mainly for the little blue eyed blond that was also taking all of this in. I didn't really succeed though.  Not a crazy ugly cry but definitely a few tears of confusion.

There was some hope though when he realized it had just been the week before that I had noticed the humming. Apparently if a patient presents with a hearing loss as recent as two weeks they can try to recover the hearing with a hefty (in my opinion!) course of steroids.  Let me just tell you...I despise steroids. More on that later though.

So Jade and I walked out...with a prescription being sent to my pharmacy and an order for an MRI to be done the next week. We also walked out with Tim's assurance that most likely it was nothing to be overly concerned about.  He mentioned that these MRIs come back negative 95% of the time.  Pretty good odds I thought. Tim also wisely asked that I follow up with his partner the next week...I am guessing for a completely objective opinion.

As we were making our way back across town, my first call was to my personal RN and the smartest woman I know, my mother. She assured me further...kind of surprised about the steroids and MRI...told me it was probably just their routine course of take them and go ahead with the MRI...surely it wouldn't show anything!  I love that woman...she is always able to calm me down as she puts things in perspective.

Part 3 coming soon...and for any fellow acoustic neuroma peeps out there, Part 1 can be found here.

Thursday, March 14, 2013

Acoustic Neuroma - One Month Post Op

Though I have drafts started for parts 2 and 3 of my acoustic neuroma story, I felt I should take an opportunity on Pi Day (!) to update quickly how I am doing one month post op.

I think it is easiest to look back to my early FB posts. For those of you who I am not friends with on FB, below is what I posted at 1 week post op.
One week. As I sit comfy in mom and dad's recliner (PTL my parents remarried last fall!), I can't help but think of where I was-just one week ago. ICU-getting wonderful care, but unable (or not wanting) to move or open my eyes. I was awaiting a 1:30am CT scan to check for bleeding on the brain. I was soooo thirsty. 24 hours w/o water plus bouts with nausea that I didn't win, left my mouth in a state of distress. Poor Jerry, he would swab my mouth with ice water, not sure what would be too much and not wanting to induce vomiting. Ah to be still. That is all I wanted and all I could do. Be still. Sure for dizziness sake, but also because of all the things I was still hooked up to - two IVs, oxygen mask, automatic compression stockings, sensors on my chest, pulse ox, auto BP cuff going off way too often, an arterial catheter and of course the other cath, too. Being still was good! When my mom read my "Jesus Calling" to me Saturday it was as if written just for me (see pic). Ah I have so many thoughts swirling in my head. I don't want to forget and therefore not be able to proclaim the Lord's faithfulness to me. I regret it if I am on screens too long, but cannot wait to write my own blog post soon. Lord, I BEG you to remind me of your every kindness.

So, how am I doing one month post operation?  In short, well.  Very well!
  • Facial nerve still working normally! Symmetrical smile, eyebrow movement, etc.
  • Dizziness/Vertigo pretty much gone. Just can't whip my head around quickly yet (as in when driving)
  • Steroids have run their course and I am sleeping better.  Still not 8 hours, but even after 5 I feel rested.
  • I can pretty much do normal life again...little things like bending over to pick something off of the floor, blowing my nose (it was so hard to remember not to blow my nose!), and as of today I can actually lift more than 10 lbs again and even start exercising.
  • Though I am deaf in my left ear, I even feel like that is going better than expected.  But I haven't done many crowded and noisy situations yet. It is weird and there have been a couple of funny situations that I might recount later, but all in all, it is not as bad as I imagined. Praise HIM!
A few things I am still dealing with: (would love your prayers)
  •  My left eye isn't quite right.  I hate even bringing it up to the surgeons (well, really just one surgeon is taking care of me post op), because it seems so minor and even if it never remedies, I will be fine. The surgery was a success! Basically my left eye just isn't tearing normally.  I will see an ophthalmologist next Wednesday to assess the situation.  Though I have had corrected vision since 5th grade, I have NEVER had my eyes dilated.  I have always had large enough pupils that they just haven't needed to.  But this time I will.  I wasn't worried about it, but today I sat with Lily (our 8 year old) for a 3 hour eye appointment and she did not tolerate the dilation well at all.  She sort of freaked out saying that her eyes were popping out and all sorts of things. Well, that pretty much freaked me out for my appointment! ;) Poor thing...she was almost blind and we didn't even know it! Not really, but pretty bad.  I am thinking that after the surgery I just endured that I can surely make it through eye dilation, right?
  • There are little annoyances going on in my head. Ringing in left ear...still present. *sigh*; Headaches are not uncommon, especially around my temple area...and only on the surgical site side (L); I have these odd clicking noises in my head...annoying, but I guess nothing to worry about. According to my doc, after a craniotomy, patients describe all sorts of weird sounds. *awesome*
  • I tire easily. Its hard not to over do it. My stamina is just not what it was....yet, anyway. 
  • I am still not driving.  They said 4-6 weeks, but I know I am not ready...not quite yet.  It is not so much a dizziness issue as it is a spatial awareness issue. I was messaging my doc about this earlier today.  Basically I have become the worst back seat driver ever! I feel like whoever is driving me is not going to stop in time in traffic.  Also, several times I have felt like cars on either side of me were going to come over into our lane...when my "chauffeur" did not. I was explaining it to one friend and she said, "So, basically you are living the life of of a rear view mirror"! Yep---objects are appearing closer than they really are. ;) I have felt claustrophobic at times too.  I keep telling Jerry it is time to enlarge the kitchen!
  • My neck muscles are still really stiff.  Pretty much ever since the muscle relaxers ran out (I get the feeling they don't really like to refill those!), my neck has been a mess.  I am going to get it worked on next week though. I think it is a medically necessary massage and should be run through insurance, don't you?!?
  • I am probably gaining weight daily. :( Not really, but I wouldn't be surprised.  It's not the lack of exercise part as much as it is the meals people have been bringing! We have been so well cared for...meals 7 days a week the first 3 weeks and now we still have a meals coming 5 days a week until Easter.  I am sure my girls will be disappointed when Mommy starts to cook again! ;) I rarely do dessert...and they have been getting dessert every night for a month now! ;)
See? All pretty minor things.  So thankful!

Still rejoicing at the Lord's provision...


Friday, March 8, 2013

Sudden Hearing Loss - Acoustic Neuroma Part 1

While there is much I would just rather forget about this brain tumor diagnosis and surgery journey, there is much more that I want to document and remember. Why? Well, three main reasons:
  1. I don't ever want to forget the Lord's faithfulness to me - even in the dark moments. And there were dark moments...more than I might want to admit. We need reminders of life altering events in our past. To help us remember, we can set up the "stones of remembrance" mentioned in Joshua chapter 4. In some sense, these blog posts are my stones of remembrance.
  2. I hope to paint an honest picture of how Jerry and I walked through the diagnosis and treatment decision making process, in an effort to help others who find themselves staring at an MRI report with a large, nicely shaped ice-cream cone-like tumor lodged in their head. Being a "lucky one", meaning being one of the 1 in every 100,000 people who are diagnosed with acoustic neuromas annually, is quite overwhelming. Just the vocabulary itself that I have gained over the past three months is astounding---neurotologist, vestibular system, 8th cranial nerve, translabyrinthine approach (craniotomy anyone?!?), gamma knife radiosurgery, advance directive, tinnitus, mastoid, skull base surgery, meningioma, vestibular schwannoma, neurofibromatosis, otolaryngologist, etc.  Seriously, someone give me the SAT, stat. I can actually pronounce and spell them too. ;)
  3. I love to is therapeutic in a way.  Now that I am no longer working part-time, I actually have the time to do it. No pressure to follow along...this is more for me than you. And I realize acoustic neuromas are probably only interesting to a small percentage of the population! ;) 
So, this is how it all started...

We spent much of Thanksgiving break at my in-laws home in East Texas. That is the first time I remember thinking something was not right with my hearing. We were playing Yahtzee, and in her typical fashion, Lily (8) was shaking the dice way too loudly in the plastic tumbler. She does everything with gusto, so I didn't comment, but started to notice that one of my ears was more sensitive to the noise than the other.  Then I realized there was actually a soft humming sound in my left ear.  I didn't think anything of it, until a couple of days later when I moved my cell phone from my right ear to my left in order to do something with my right hand. I could still hear the voice, but it was hard for me to figure out what they were saying.  Just on the left side. 

At this point I was about 6 weeks into a new part-time job.  It was crazy and I disliked it, but I still didn't really want to miss it for a doctor's appointment since I was so new. I was also having another symptom in my ears, that I would learn was totally unrelated to the tumor. I had this weird itchiness and I would wake up with moisture in my ears. I think that was actually more bothersome than the humming, and seeing that I had my first ever (in my life...according to my mother dear!) ear infection about 6 months earlier...I decided I better get my ears checked.

I HATE calling in favors to friends who also happen to be physicians. Having a couple of physicians in the family helps me to see it from their perspective, too (though I don't hesitate to call in favors from them, ha!). Basically, I think is is rude and presuming and just not ideal....BUT...what did I do when I needed to get in quickly and on a day when I wasn't working? I texted Dr. Tim Thomason, a friend from church and fellow parent at our girls' school, to see if he could work me in! ;) He kindly obliged.

So, on Wednesday 11/28/2012, Jade and I headed to the ENT office of our friend.  I figured after a round of antibiotics and a steroid shot, perhaps, that I would be as good as new.

Wow, did I figure wrong.

Part 2 coming soon...

Related Posts with Thumbnails