New Normal

One Sunday morning in March, the one closest to St. Patrick's Day, I drove to meet friends for brunch at the Lazy Day Cafe.  It was kind of a big deal because it was the first time I had driven on my own since the surgery.  I turned on the CD player (Dad doesn't understand my music unless I happen to be listening to oldies or country) as I was driving to meet Krista and Mercedes.  I was almost to the cafe when it happened..."On Top of the World" by Imagine Dragons started playing.  It was the first time I'd heard the song since my surgery and I lost it.  Crying so hard I about couldn't see, I suddenly started laughing in sheer joy because it finally hit me...I'd survived!

You see, I'd cried the first time I heard this song and listened to the lyrics (click here to view the lyrics) because I kept thinking "That's how I'm going to feel after the surgery!"  In my mind before the surgery, this song was going to be my victory song.  So there I was having a full on Steel Magnolias moment as soon as the song started playing.  There's this part in Steel Magnolias after Shelby's funeral where Truvie says "laughter through tears is my favorite emotion" that I guess I had never fully understood until that moment.

Lazy Day Cafe with Krista and Mercedes

It was during the week following this brunch that I had a series of follow-up appointments.  One with my neurosurgeon and one with an oncologist at the Huntsman Cancer Institute, because he specializes in continuing care for brain tumor patients.  It was on the way to this appointment when I came across this! 

Those of you who had Bessie for Latin at Burns may recognize part of this image, particularly this part...(since this was one I remember working on in high school)

But who knew that the puzzle we did way back when was actually part of a larger puzzle with 24,000 pieces (yes, you read that right).  Random side note, I know but I thought it was awesome!

With Lisa

And it's hard for me believe that five months have passed since that time.  In April, I completed my speech therapy.  Actually, I met with Lisa just before the PRT Dept. Luncheon where I received the Most Inspirational Masters Student Award, I may be the first person to receive that award two years in a row.  That was also the weekend that Dad and I headed on a cross-country trip back to NC.

PRT Award Luncheon

I believe that some of you know that I wasn't in NC a full week before I packed up and headed to Brazil for almost two weeks.  But what you might not have realized was that this was another test in my book.  I had missed going to Kenya in September 2013 because of Wilbur and since that time one of my goals had been to be well enough to travel to Brazil for the 2014 conference.  And I don't think it hit me until I was in the São Paulo airport and couldn't order in Portuguese that it dawned on me I was in South America...in the Southern Hemisphere for the first time in my life! Based on my experience at the airport, I was afraid I was in for more than I bargained for and wouldn't be able to communicate at all (again). 

Hotel Pirá Miúna with a Travelers Palm out front

 Luckily, the airport was my biggest struggle.  I absolutely fell in love with Bonito and the surrounding area.  I probably need to dedicate a separate post to my time in Brazil.  


Now I'll have you know that I've been working on this post since that Sunday in March and have just never been able to finish it for some reason.  But in the past couple of months I have been reminded once again how utterly precious and fragile a gift life is in the first place.  Its bittersweet because while this has been a summer of friend and family celebrations (including the birth of my nephew Emmett!) it has also been a time of mourning family friends we lost.  My thoughts and prayers go out to all those who have recently lost a loved one.

One year ago today, I posted this to Facebook: 

It's hard for me to believe that a year has gone by since I was diagnosed.  In some ways it feels like it was more than a year ago since I found out and in others it feels like it was yesterday.  I had more follow-up appointments in June and everything is still looking good.  I will have more follow-ups in October and I know the doctors plan to keep a close eye on me for awhile, after all having a brain tumor is a life sentence and chances are that I haven't heard the last of Wilbur yet.  However, for the time being, I'm going to enjoy living life for awhile!  I still have a few lingering issues with my speech, mostly when I'm tired.  Sometimes there are words I that won't come to me, other things I mispronounce, a slight weakness still with the right corner of my mouth, but I've realized that I'm the only one who notices and I shouldn't be self-conscious about it.  And so while in some ways, my life has changed forever in ways I never expected, I've realized that the new normal for me is a good place to be.

I guess I've always known that I'd need therapy someday...

I guess all families have their inside jokes or sayings...at least I assume they do!  In our family, two of the sayings that I have heard over and over again over the years are:

• Your momma must have dropped you on your head as a baby
• Youngun' you ain't right (in the head)

I'm pretty sure I was one of those kids with an overactive imagination that got me into trouble more than once.  And I'm pretty sure that one or both of these phrases were usually used after I'd said or done something off the wall that didn't make sense to anybody but me.  So I guess you could say it was just a matter of time until I'd need therapy of some sort.

In the hospital, I met with speech therapists, physical therapists, and occupational therapists.  The only ones I saw before I was out of the ICU were the speech therapists.  Now in the hospital, they were also the ones who determined what kind of food I got.  So they gave me different "snacks" to see how I managed.  I remember applesauce, saltines, and graham crackers (seems like there was one other item but I don't remember what is was).  You have realize that the day the surgery, I could barely use my right hand.  Not only did I have IV's in both arms, but my right hand was so weak I couldn't even lift and grasp a fork.  The right side of my mouth was also weak.  Drinking something straight from a cup was out of the question unless I wanted to spill it all over me.  I had to have a straw for close to the first three weeks after surgery.  But I admit it was kind of interesting to me in a weird way.  I knew that things had changed for me but it was only when I was being tested that I learned what the current limits were.  The amazing thing was the limits became less and less of an issue every day.

On Thursday after the surgery, I got to meet with the physical therapist in the morning and the occupational therapist in the afternoon.  I loved the physical therapist!  She got me up and walking about (which made me very happy, in case you haven't noticed I have trouble staying still, it's a wonder I could ever play "Freeze" as a child) and she made herself an obstacle that I had to move around.  I still smile thinking about going with the occupational therapist and seeing her in the hall and knowing from the way she was looking at me that she was going to get in my way again.  I know I just shook my head and said "No, no, no!" as I moved to pass her.  She and the occupational therapist laughed because I caught on so quick and moved to avoid her. 

I wanted to see the Ice Castle in Midway!

The day after I got home from the hospital, I woke up at 5:30 or so (early for me, normal for Dad) and went to the McDonald's near my house and then to the grocery store.  I think Dad was worried about the grocery store being too much for me to handle.  (We'd discovered the evening more that I got overstimulated very easily.  I couldn't handle having the TV on with the sound on as well.  I could watch or I could listen, not both)  But since it was so early on a Saturday morning I was fine and I figured it would me a whole lot easier for me to walk with Dad and show him where things were than it would be for me to try to explain with words where things were or just let him go in and try to find things on his own.

One week after the surgery, I wanted to get out of the house so we ended up going to Midway to see the Ice Castle (which I thought was really cool).  And the next day I got the staples removed!

Why are you taking my picture?

Back side before staples taken out

Front side with staples

We'll call this my signature face...

Before

After...no more staples!!

That first week out of the hospital was when I started outpatient therapy.  I met with Chelsea for PT twice (total) before I was dismissed and Mark from OT once.  Mark was able to measure the strength of my grips on both sides (my right hand has regained some strength since then but it's still slightly weaker than my left) and my response time on this really cool light board.  The light board is a precursor to testing ability to drive.  I was just below normal at the point, but with the way I was progressing Mark didn't think I'd need to see him again or even drive with him before being able drive on my own.  I also had outpatient speech therapy twice a week with Lisa and Sydney (who's working on her masters in speech therapy).  And I promise the speech therapy has had no effect on my accent!

I don't remember learning to talk.  And I don't think I've ever really thought about what part of your mouth you use to make certain sounds.  This forced me to think about things like that.  For a while I was really having trouble distinguishing between the "sk" sound and the "st" sound.  Like instead of saying Starbucks, I would say Scarbucks.  I had one whole session working on pronouncing each sound and not mixing it up.  These sessions also made me realize that there are certain words I've never liked to say because they sound weird to me.  One of my words is rural.  With the way I say it fast there's just now good way to pronounce the second "r."  Sydney's word was delicatessen.  Now when I stumble over a word, I have to slow down to pronounce it correctly and then repeat it three times.  On Sydney's last day, I joked that before I left she had to say delicatessen but that I would be nice and now make her repeat it three times.  Lisa and I were amused, Syd was not.

Today was my last speech therapy session.  Now I still stumble over words when I'm trying to talk really fast or am feeling tired.  I know I joke about needing therapy, but honestly I admire all the therapists I'm come into contact with.  They probably don't hear it enough, but their efforts are greatly appreciated!

Does anyone ever really get any rest in a hospital?

Happy Pi Day (3.14)!  Happy Ides of March (March 15)! Happy St. Patrick's Day!! One month ago Friday I was released from the hospital, so I figured this was as good a time as any to reflect on my experience.

There were three questions that I got sick of answering in the hospital and will be glad if I never have to answer them again.

1. What is your name?
2. Do you know where you are?
3. What is the date and/or the year?

Everybody was just lucky my smart aleck side wasn't quite functioning because now I have all kinds of comebacks!  For instance:

1. The Doctor or perhaps Melody Pond...
2. I should have gone with Tahiti. Or I could have just said in a galaxy far far away! Or on Gallifrey or the TARDIS!!!
3. No, I don't know the date, I'm wherever the Weeping Angels sent me!

And that's just a taste (because obviously I'm been watching Doctor Who reruns during my recovery)!  I would love to hear any witty comebacks you want to share!  I really should have counted how many times I got asked those questions.

Still in the ICU

These questions may seem simple and ordinary now, but I was having such a time getting the words out that I was WAY over these questions after the fifth or sixth time I was asked on the first day.  It also didn't help that for some people my first name wasn't a good enough answer and knowing that I was in the hospital wasn't enough either, I'd get the "which hospital?" as the next question.  Some realized how hard it was for me to pronounce February and let me get by with just saying 2014 but not all (that's what I get for not having surgery in a month like May or June).  Now realistically, I know that every person who asked those questions were just doing their jobs and for the most part I really didn't mind (though now I really wish I made some smart aleck comment at least one time).  

There was only one person who I minded asking the questions.  I still don't know his name, maybe I blocked it out because he annoyed me so.  The first time he came to see me was at like 4:30 in the morning the day after my surgery.  I had not had a comfortable night to say the least (I won't go into much detail, it would probably be TMI for most).  I had FINALLY gotten to sleep at 3:30 a.m. or so (and I think I was sleeping heavy because I was just so exhausted and it had taken so long to get comfortable) when in walks this guy shouting questions and when I didn't respond immediately (because I was out cold) he gets even louder!  I finally woke up enough to realize what was going on and said clearly (I mean the clearest thing I had said to that point) "If you will just hold on a minute, I will answer your questions."

After moving to a normal room

I tend to think that I was pretty entertaining in the hospital (even without the smart aleck comments).  While the days kind of run together, I remember talking to a social worker who needed to get Mom and Dad's phone numbers.  I couldn't say the numbers and even if I could I was afraid I would end up saying one number when I was meaning another, so my solution was to hold up each of the numbers on my hands.  Well apparently, he thought I was pretty special because I was so determined to get him the numbers and I didn't get frustrated and give up.  I vaguely remember apologizing for taking so long and him saying it wasn't a problem. In five years that he'd been in his job, he'd never had anyone use their hands to hold up the numbers. (Which kind of baffles me honestly, I mean we learn to count on our fingers so why wouldn't using your fingers occur to most people?)

I got poked and prodded so much during my stay that by the end, I didn't flinch or tense up for any reason.  In fact, I might have dosed off during one of the rounds of blood work (I especially if they knew what they were doing. I only had one person you had trouble getting blood from me, they must have been new).  I know that I was given potassium shots several times while I was in the hospital (I don't know what for, if someone wants to enlighten me, feel free.)  I just remember trying to explain to Mercedes what they were giving me and not being able to think of how to actually say the word (this word gave me trouble for the first two weeks).  My solution when it just wouldn't come to me:  "You know the stuff that's in bananas!"  That was a recurring theme throughout my time at the hospital as I saw doctors, nurses, and therapists (who were trying to establish baseline measures for when I started outpatient therapy), even if I couldn't figure out exactly how to say or do something, I figured out some other way to get my point across!  (Again, my stubbornness in action!)

On a side note, Mercedes saw me for the turn time on Wednesday and she claimed that I spoke to her or the nurse without ANY kind of an accent at all, which she just thought was the strangest thing to hear from me.  I don't remember it, deny any knowledge of it, will pretend it didn't happen, and either way having Mom and Dad (who's still out here) with me has ensured that I have retained my Southern accent.

More to come soon!

Slow and Steady!

Okay girls and boys...here we go!!  Bear with me because I may not be able to make total sense! (And this post has taken me days to compose) For right now, the speech and language is the hardest thing for me to handle.  The therapist says I have expressive aphasia.  But it’s getting better every day.

Feb. 10, 2014 – We arrived at 5:45 a.m. at the University of Utah Hospital.  Mom and Dad went in with me as I checked in.  In Salt Lake, I attend Christ UMC and Pastor Pat had agreed to come to the hospital and stay with my parents during the surgery.  So he was waiting for us in the surgical waiting room when we got there.

I knew I had to have one last MRI before I went into to operating room.  One of the neurosurgeon residents came down to get me.  She was afraid to wait for the orderly to come and take me because it would be 30 minutes before get me and that would mean the surgery wouldn't start on-time if they had to wait that long to get the MRI done.  For some reason this part of the day really made me feel like I was on an episode of Grey's Anatamoy.  The resident reminded me of the character, April Kepner from the show (I think was her.  Her first year on the show was the year I watched the show regularly).

For this MRI, I had “life-savers” placed strategically around my head in an asymmetrical pattern.  They were then outline with a marker so I had lovely purple marks for days after.  This MRI was easy and it only lasted for 12 minutes.  (I have one after the surgery that from my perspective didn’t go as well).  As I was waiting to go in, I talked with the MRI techs about the my speech after the surgery.  We had heard of people who after surgery wound up speaking with a British accent and we were trying to decide if I would me one of those people.  (Though I had no intention of losing my Southern accent or else heads would roll!!)

By the time I got back from the MRI, Mom, Dad and Pat had met the anesthesiologist and one of his residents.  Since I wasn’t supposed to have something that blocked my throat so I could speak during the surgery, they gave me something that tasted like an extra salty sour catch kid to control my stomach acid.  Shortly thereafter, they took me back to the operating room and I don’t remember anything else until I woke up.

Now that may sound wrong to you because since I found out about the surgery, they’ve been planning to wake me up during the middle of the procedure.  WELL….things didn’t quite go as planned.  They had my head pinned in several plans to keep it still during the procedure.  And I was supposed to wake up as easy as you please once they turned the anesthesia off.  But they couldn’t get me to wake up and apparently I am just as fidgety when I’m out as when I’m awake.  So I ended jerking my head against the pins trying to hold me still and getting cut by the pins in the process.  I (of course) didn’t know about any of this until after the fact.  I woke up 8 hours later in the OR before being wheeled pasted the waiting room to the ICU.  That time I woke up like I was supposed to, so I was wide awake and knew exactly where I was and what was going on (though I had trouble saying so).  I did know that when we passed the waiting room, I saw Mom, Dad and Dan and waved as they wheeled me passed. 

Anita is home!

Hey friends. Anita was released from the hospital on Friday and is settling in well at home. Her recovery has been remarkable. She even went to the grocery store with her dad yesterday. Her speech is a bit slow but she will start speech therapy soon, and that will improve over time. Thanks for all of your prayers and encouragement.

~Amelia

Wednesday Update

Hey friends. I talked to Judy earlier this morning and Anita is doing well. No major updates to report. She is still in ICU and she had another MRI yesterday and they are awaiting the results of that. They will probably know the results later today and then make a decision about when to move her to a regular room. I will keep you posted as I find out more. Thanks for your continued prayers and support!

~Amelia

Morning Update

Hey guys! I just talked to Judy. Anita had a good night and she rested well. This morning a speech therapist came in and did some exercises with her and asked her a lot of questions to which she responded to correctly. Her speech is a bit slow but that is because of the swelling and that should be back to normal once the swelling goes down. She also was able to do some writing exercises and she got up and walked and sat in a chair for a bit. She was able to eat some applesauce and crackers but for now they are going to do a pureed diet. Another MRI scheduled for later this afternoon and she will probably be in ICU another day or so but things are going better than expected! Judy said they have a wonderful support team there and everyone has been incredible. She thanks everyone for your continued thoughts, prayers, and encouragement.

Also, some of you have asked about visiting. Once she gets moved into a regular room, they think visitors will be okay but I will keep you posted about that. 

~Amelia

Wilbur is gone!

Hey guys! Anita wanted me to keep the blog updated for her while she is recovering. I am so happy to announce that Wilbur is completely gone! The surgery went very well, and afterwards she was able to talk and move. She will spend the next 1-2 days in ICU under close supervision because of swelling, but the doctors were extremely pleased with how everything went. I will update you when I know more details. Anita's family wanted me to thank all of you for your continued prayers and support!

~Amelia

And so it begins...

Oy Vey!! It's been six months since I found out about Wilbur!!

But somehow, it seems like it's been A LOT longer than six months since WD-Day (I'm referring to Wilbur's Discovery Day -- August 26, 2013, like that's not a date that's forever etched in my memory!).  It's less than 48 hours until I have to check into the University of Utah Hospital bright and early.  I'm ready and calm and yet at the same time anxious and terrified which really just results in my head spinning out of control.  I am SOOO ready to have this done and over with, pass GO and collect $200!  But there's still a lot of fear of the unknown about what things are going to be like when I wake up on Monday.  So for now I'm just trying to concentrate on what I do know and what I can control.

SO.....

I found out yesterday that I have the first OR spot.  I have to check-in at 5:45 a.m. and will head into surgery at about 7:30 a.m.  Before they knock me out, I'll have to have one last MRI for the Doc to compare with my MRI results from December.  Yesterday I went into the neurosciences surgical center and answered all the pre-op questions and got the bloodwork handled.  I'm going to be participating in the Tylenol study (which you're probably like "What? Tylenol isn't new!") but a couple of years ago the FDA approved basically a liquid form of the drug which has been used in neurosurgery patients.  The rest of the cocktail of drugs I'm going to be on will apparently make me wonky but they've seen results where neurosurgery patients given this liquid Tylenol for the first 48 hours after surgery see a lot of benefits from better pain management to being up and walking around a lot quicker.  So they are testing to see if these effects are occurring and can be attributed to the drug.  So I'm going to a guinea pig.  It's a double-blind study so no one including the surgical resident overseeing the study will know who received what treatment for another couple of months.  I either will receive the Tylenol with the other drug cocktail or I will not.  Either way, I BETTER not be feeling too much of anything!!  But it would be nice to be more aware sooner (which is something that may happen with the Tylenol addition).  I told Wally, the resident, that I just wanted to know after the fact what I'd actually gotten and that I was interested in the results of the study.  Gosh, I'm such a Geek!! That was my one question for him "Can I please receive a copy of the results of the study afterwards?"  (I find the whole thing kind of fascinating, is that weird?)

While I was there I got my pre-op bloodwork taken care and can I just say I want that guy to put in my IV when I'm admitted.  Holy Cow!!  I think that's the quickest that someone's been able get blood from me with such little effort.  I mean it took three different people to get the IV in me when I went to the ER and this guy just went about his business quick and efficient while I was answering the nurse's questions.  I know it may sound weird to sing the praises of someone's ability to collect blood but I've been donating blood since high school and I've always had to mentally prepare myself for what the technicians always have had to do to take my blood, it's always been such a process.  I've ended up with my entire inner elbow purple and stiff more times than I care to talk about.

I also asked about my most important question that has of course been weighing on my mind since WD-Day.  What are they going to be doing to my hair?  The resident made it clear that Dr. S prefers to shave the whole area he's working with.  I've read and seen online where sometimes surgeons only end up shaving a small patch about and inch wide for the actual incision and the rest of the hair is left alone.  So like I thought, half my head will be shaved.  But seen I wanted pictures of the process and was finally told that I'd already be out cold when they went to cut my hair.  So I decided to take matters into my own hands and control the situation.  I know they may end up having to take more hair on the day, but I could at least get the photos I wanted that will let me feel in control of something!

Here goes nothing!!

Oh Lord, I'm really going to do this!!

I'm doing the first buzz!

We'll let the professional, Adriann, handle the rest.

Oh boy! It's too late to turn back now!

Wandering Wilbur looking on...

Wilbur is not amused, but I kind of am!

Haha! This just made me laugh!

Eviction Notice for the resident in Anita's brain!!

Artist Installation at SLC EVE Celebration

You know with all the frustrations of the last couple of months, I can honestly say I was really looking forward to the start of 2014!  Since the Affordable Care Act officially went into effect on January 1, I was waiting patiently (or at least trying to) for things to line up.  I'd been told when I went for the functional MRI that I'd need to meet with the neurosurgeon once more before I could schedule surgery.  My appointment was set for January 13, 2014.  I received calls the week before from both the Healthcare Marketplace and my insurance company.  I'm pretty sure when the Marketplace people called to talk to me about being eligible for Medicaid that I laughed.  I informed them (without being too much of a smart aleck) that I did not actually qualify in the state of Utah and that I had already resubmitted another application and chosen an insurance plan.

Happy New Year 2014!!

So yesterday I had my appointment with both of the doctors who will be with me in the OR.  We started by reviewing some of the results from the functional MRI.  Overall, the feedback was very encouraging.  Wilbur, while still a major pain in the tuckus, is conveniently accessible at the surface of my brain.  The place that is of most concern is how he's stretched my primary motor cortex.  This stretching explains why during the seizures I couldn't control my arm or mouth and why my speech was sometimes slurred afterwards.  The good news is that at least 80% of Wilbur can be removed before the surgeon gets to that area of my brain.

The appointment ended with my surgeon making a joke about how I should start speech therapy before surgery because he detected a hint of a drawl.  I (of course) put my hand on my hip and declared that I better still have a Southern drawl after surgery which started a whole round of laughter from both doctors and Danielle and Mercedes.  I left with a tentative date for the surgery and feeling like a huge weight had been lifted.

Well, as of today, I officially have a date for my surgery!!   Adios Wilbur!!! On February 10, 2014, I will have surgery at the University of Utah Medical Center.  Instead of 7-10 days in the hospital, I will more than likely only have to spend 2-3 nights in the hospital!!  AND if Wilbur continues to cooperate and is the low grade tumor they believe him to be, I may not have to undergo chemo or radiation at any point in the near future!!!

I cannot adequately express how grateful I am for all the love and support and prayers that have come my way since this started.  I know I've been horrible about actually sending thank you notes (unfortunately, it's not just thank you notes. I'm pretty sure I still have birthday cards I bought years ago that never made it the birthday boy or girl) and just because I'm bad at sending notes, please know that it does not in any way reflect my level of gratitude.  While I am very hopeful about the surgery, there are still a lot of unknowns about how my recovery will ultimately go.  Please continue to keep me in your thoughts and prayers!

But in the meantime, it's finally time to say:  "So long, farewell, auf Wiedersehen, Goodbye!" to Wilbur!!  Clever eviction notices will be accepted!!  I may feel the need to create a cake to mark the event and "Wandering Wilbur" may need to wander to a few more places over the next month!!