Peace out, 2013!

Last Monday, 12/23/13, I had a five-month follow-up MRI.  Once again, it was claustrophobic, totally sucked, took forever, was seriously loud (even for a one-eared person), etc. etc.  However, I’m glad it’s over and I will be getting the results on January 6 when I meet with Dr. Anderson.  Fingers crossed Trudes is completely gone or shrunken smaller than the chickpea-size she was one month post-op.  As you recall, they had to leave a small portion of her in my head because her fat butt is stuck on my facial nerve.

Anywho, since it is New Years Eve (AKA the most hyped-up and overrated holiday of the year where you’re all like “OMG- what are your planssss?!” or “I’m going to this killer party in the city!”) I think it’s time that I say good bye to 2013, once and for all!  I hope I don’t make you all cry again, like I apparently did on Thanksgiving (sorry about that)…

As you can all assume, 2013 was a pretty awful year for me, but rather than be totally negative and bitch/moan/complain, I thought I’d make a list of one or two good things that happened each month during 2013.  Let’s begin!

January– I began student teaching in Mount Prospect and was assigned to a wonderful fourth-grade class of 27 boys and girls led by the amazing and funny Pam.  She was/is the best mentor I could ever ask for!

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(Kinda creepy, I know, but we teachers gotta be careful)!

February– I attended a birthday brunch for my beautiful Grandma Mick with family.  Isn’t she lovely?  Grandpa Jim is a lucky guy!

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March– I took a trip to New Glarus, Wisconsin with Ryan, my sister Katie, and brother-in-law Rick for a “wild and crazy” spring break.  We drank good beers, sang karaoke, and enjoyed each other’s company.

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April– I went to see Fleetwood Mac play at the United Center with my mom and sisters.  I gotta say, Stevie Nicks has still got it!

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May– I graduated with a Master’s degree in Elementary Education.  Rather than attend graduation, I celebrated one of my best gal pals, Janet, at her bachelorette party in Nashville with my friends.  We had the best time!

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June– I traveled to Door County, Wisconsin with my extended family (our tenth trip up there!) and later that month celebrated my friends Janet and Mike as they tied the knot.

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(The DC pic is from last year, but you get the point)…

July– I [once again] traveled to Door County Wisconsin to celebrate my friends Jenna and Mike get hitched (about a week before surgery.  I just had to go out with a bang!)

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August– I found out I would be an aunt to another niece or nephew.   Congrats to my sister, Katie and her husband Rick!  Baby Carney is due in April 2014.  I also celebrated my wonderful parent’s 34th wedding anniversary by having a backyard BBQ- my fav summer activity!  Oh yeah, and Miley twerked, entertained the world, and gave us all something to talk about.  Thanks for taking my mind off Trudy, Miley!

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(Don’t worry, I won’t include Miley on this one).

September– I welcomed my new niece, Miss Shea Elizabeth, into the world and celebrated the 2nd bday of her big sis, Nora.   Another huge congrats to my sister, Lin and her husband Brett!

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October– I attended my first ANA meeting where I was comforted by others in my situation and was totally enlightened by their experiences.  It really was a great day and I’m still looking forward to the next meeting!

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November– I celebrated Thanksgiving by reflecting on how truly thankful I was this year (this year more than ever).

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(Apparently I didn’t take any pics at Thanksgiving, but this’ll do).

December– I was surrounded by family and friends all Christmas season and I will celebrate the end of 2013 tonight with some of my greatest friends.

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Thinking back, yes, Trudy really put a damper on 2013, but there were also so many positive events that happened and I will not allow that rude tumor to overshadow them.

Hope you all have a safe and wonderful holiday.  Sayonara, ciao, adios, au revoir, hasta la vista, GOOD RIDDANCE 2013!  Here’s to 2014, may it everyone’s best year yet!  Cheers!

Now I’ll go help myself to some of that ½ price champagne I bought at Dominick’s…their loss was definitely my gain 😉

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Extra thankful

Aside from this being one of the most stressful years in my life, 2013 has also made me realize how thankful I am.  Between student teaching and my Trudy escapade, you’d think I would lose it!  If it wasn’t for each and every one of ya, I don’t think I would have never gotten through all those stressful times.

Now, not to get all sappy on everyone, but I think it’s appropriate for me to do a Thanksgiving Day post, eh?  Where do I begin to talk about how thankful I am this year?!

First and foremost, I’d like to thank my superhero who saved my life, Dr. Sacks.  If fate hadn’t led me to him, I’d hate to say it, but it would’ve been a really ugly picture.  I repeat—he saved my life, and I am forever grateful.

I also want to thank Dr. Anderson, Dr. Leonetti, and their medical teams for their expertise in removing that fat biatch from my head!  I can’t imagine having any other doctors perform that miracle like they did.

I want to thank my amazing family for their support, humor, and patience during my recovery.  I wasn’t always the sweetest girl to be around when I was on those crazy meds and I’m sorry for being snippy at times.  Thank you for making me laugh throughout all this craziness; it made it a million times easier!

I’d also like to thank my wonderful friends, who visited me, sent prayers/flowers/gifts/cards/text messages/etc, got me out of the house, and provided me with encouraging words all the time.  You know who you are!  I hope I can repay you someday.

[Wow, this is really starting to sound like I’m accepting an Oscar, huh?  “I’d like to thank the Academy…”  Too bad acting never worked out for me, this sounds pretty good!]

Thank you to the random people who read my blog.  Yes, I’m talking to you in Switzerland, Sweden, Romania, Belize, and Demark.  I’m glad you have an interest in my life with and without Trudy.  Really, I mean it, thanks for reading!

How could I forget the next guy?!  I obviously want to thank God!  Despite him giving me this rude tumor for whatever reason, he also had Dr. Sacks find it at the right time, got me through that wretched surgery, and helped me recover quickly.  I believe I am a stronger person for it!

Last, but not least, I’d like to thank my love, Ryan, who was/is the best boyfriend, nurse, friend, confidence booster, believer, calming influence, and cheerleader (wait, did I seriously just call Ryan a cheerleader?  Sorry, Ry…) EVER!  Thank you for sitting with me every day while I slept away the pain.  You are fantastic.

Aaaand, now I’m crying.  Cue the music—your speech is over, Kelly!

Hope you all have a blessed Thanksgiving with family and friends!  Thank you, thank you, thank you for EVERYTHING this year!  I really am the luckiest, most thankful, deaf-in-one-ear gal in 2013 because of each and everyone one of ya!

Now I leave you with this strange yet hilarious Thanksgiving message.  Thanks for introducing me to this in 2004, Emmy!

What?! Pardon me?! Huh?!?!

Since I’m almost 4 months post-op, I thought I’d share what has been the hardest change for me thus far.  To best honest, I’m not sure if this will ever get “better,” hopefully easier, but the hardest adjustment has definitely been my hearing loss.  Many have asked if it will ever come back.  The answer?  No, it won’t.  Unfortunately it was necessary to sever my hearing nerve when Trudy was being removed.

I am constantly making jokes about how I am “one-eared” and/or I ask people to speak in the “good ear,” but I really mean it!  I literally hear ZERO out of the other ear, so it’s extremely frustrating when someone continues to talk into it.  GET IT STRAIGHT PEOPLE, I HAVE ONE WORKING EAR—and it’s my right ear!  If you’d like to chat with me, be sure you’re speaking into my right ear or sitting on my right side!

Because of all this hearing loss, I find it difficult going out to loud restaurants, bars, movies, sporting events, and the like.  I’m discouraged because I consider myself quite a social person and this whole Trudy incident has had a major effect on my social life.  I know it sounds sort of trivial, but it’s the truth.

Even though it’s hard, I have been trying to get out a little more now that my energy is coming back.  I’ve gone out to eat several times with groups of friends, and I’ve realized the “perfect setting” for me is four people and I prefer rectangular-shaped tables.  Any group outing larger than that is pretty tough.

I’m very aware of where I sit at the table in a restaurant too.  If I place myself at the end of a rectangular table/booth, I can hear everyone at the table (for the most part).  Round tables are the pits because whoever’s sitting to my left will be ignored the entire meal and I won’t be able to hear them, like at all.  Same goes for square tables.  See what I mean?!

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My friends Amy, Leanna, and Janet reminded me this past Friday (while out to dinner in a noisy Mexican restaurant—yes, a group of 4, & yes, we sat at a rectangular-shaped table), that I will adapt to these noisy places, it’s just going to take time.  They agreed the only way to get used to it, is by getting myself out there.  Thanks for the pep talk, ladies!

I took their advice and went to one of the loudest places I know on Sunday.  Where did I go?  Soldier Field, of course!  Talk about noise!  Ryan, Katie, Rick, and I went to the Bears game and it wasn’t so bad after all, probably because no one could hear each other, haha!  Jokes aside, I am really glad I’m getting out more and adapting to this one-eared hearing.  It’s all part of this process; I just have to work on the patience part.

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Drug free!

Well boys and girls, it’s official!  I am med-free!  I took my last lil’ dosage of the anti-seizure medication last night and it was a wonderful feeling!  I like to think the “L” on that half-pill stands for “last” medication for a while!  Or maybe it stands for “lousy” joke…?

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Either way, drug free is totally the way to be!

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Other than that, there is not much new around here.  My hair is really starting to grow back to the point that Skrillex is almost officially gone.  There goes my Halloween costume….

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At least now I have some killer sideburns.  Who says ladies can’t rock sideburns?

ANA meeting

Yesterday I attended my first ANA meeting, and it was awesome!  Everyone was so outgoing, encouraging, and knowledgeable.  Upon entering, we received numerous packets of information about facial nerve damage, hearing loss, methods for improving balance, and other issues that acoustic neuroma patients deal with post-surgery.  I can’t wait to read up on all of this and learn even more.

A small group of us, some joined by family (I had my mom attend with me), gathered at the Evanston Library to hear a speaker discuss issues with posture, balance, and movement following acoustic neuroma surgery.  Our speaker was Dr. Jeff Getzell, who is a behavioral optometrist and had surgery for an acoustic neuroma in the past.  Jeff was very informative about what he does and provided strategies we can use to help with our balance and posture.

He had us do multiple hands-on activities as well.  One activity involved three people who tried walking with their eyes closed.  First they walked with their glasses on and then they walked with their glasses off.  When they had their glasses off, they took wider strides and had less tension in their bodies.  This showed us that glasses give us sight, but not vision.  He stated that most people believe vision and sight to be the same thing, when vision really affects how we think, speak, listen, and move.

Yours truly was quite the volunteer for many of the exercises (at first by choice, then I was simply asked to do them).  By the end of his speech, Jeff was referring to me as “his favorite person,” and told me I did a great job.  I’ll take the compliment! 😉

After our speaker, our group was able to ask questions and converse with one another.  This was my favorite part—meeting everyone and hearing their stories!  Out of the 12 people at the meeting, 9 people were acoustic neuroma patients in various stages of treatment.  Everyone had a different story to share.  One man, Gregg, is having surgery on Tuesday.  Who are his doctors?  Well, Dr. Anderson and Dr. Leonetti of course!  He was obviously nervous, and I reassured him that he is in THE BEST hands!

Another young woman had her surgery about a year ago.  She told me she had pretty severe facial paralysis post-surgery but is now almost fully recovered from that.  After stating that Trudy was almost 5 cm, how I had a shunt implanted before surgery, and that my surgery lasted over 14 hours, one man came up and hugged me!  He said his experience was so similar to mine and that we should swap stories because of it.  The only difference?  His surgery was in 1986!  I feel very fortunate that medicine has advanced so far since then, that I had a fantastic team of surgeons and other healthcare professionals taking care of me, and that my recovery has gone fairly smoothly.

All in all, it was a great day!  It was so wonderful to meet others who know what it is like to go through an acoustic neuroma surgery and discuss issues and strategies with them.  I am already looking forward to our next meeting!  We all decided a quiet place is best since all of us only have 1 ear that works- haha!

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Neuro-ophthalmologist visit

This past Monday, the 7th, I had my 2-month-ish follow-up with Dr. Pula, my neuro-ophthamologist.  Remember him?  Yep, it’s been a while!

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Anyway, he had a few things on the agenda.  He wanted to check my eyesight, test the swelling behind my eyes by doing another OCT scan (as I had previously done twice), and discuss what my next steps are.

My eyesight has not changed much.  It is still better than it was at its worst.  My right eye is seeing 20/20 and my left eye is seeing 20/30 (which are both pretty good).  Dr. Pula thinks my vision will still change slightly over the next few months as the swelling continues to go down behind my eyes.  I will have another eye exam in about 4 months.  He thinks by that time, my eyesight will probably not change.

The OCT scan revealed more great news!  The swelling and pressure behind my eyes have continued to go down—I am almost in the “normal” zone for all areas of my eyes.  I had this scan done before surgery, two weeks after surgery, and then this past week.  Before surgery, as I had mentioned in a previous post, the swelling was so off the charts he ordered an MRI (and that’s when we found the reason for said swelling—Trudy, that rude tumor).  Since surgery, the swelling has decreased tremendously.  Dr. Pula anticipates when I see him again in 4 months, it should be completely normal in all areas.

Next week, I will have another visual field test to test my peripheral vision.  The following week, I will be attending my first ANA (Acoustic Neuroma Association) support group meeting.  I am really looking forward to meeting others in my situation, hearing their stories, and receiving advice from them.  After that, I will be quite doctor and/or appointment-less for a while, woo hoo!

I cannot stress enough how great it feels to be improving each week.  Thank you friends and family for your continued support!  I love you all!!!!

Independence

Freedom at last!  I am happy to report I am now driving and working again.  Slowly but surely I am gaining back some independence, and it feels damn good!

Since I’ve been weaning off this anti-seizure medicine for a few weeks and am feeling fine, I gave myself the go-ahead to start driving again.  It felt surreal the first time I got behind the wheel to drive to Citibank (approximately 1 mile from home).  I haven’t gone that long without driving since I studied abroad in Italy for 4 months back in 2007.  I’m easing my way in, driving short distances.  The only change I’ve noticed is my eyes seem extremely sensitive to light, whether it’s the sun or headlights shining in my eyes, I find the need to squint.  I think this will take some adjusting.  For now I am all about the sunglasses—gotta protect them eyes!  I cannot express how nice it is to feel somewhat self-sufficient again.

Also last week, I returned to work.  My former boss at the real estate office, Dennis, was gracious enough to have me back very part-time.  He is allowing me to come and go as I please, basically choosing my own schedule.  How nice is that?!  I am beyond thankful for him.  Best. Boss. Ever.

I worked two days for about 5 hours each.  It is the perfect job for me right now as I am still building up my stamina.  At the moment, my whole teaching gig is on hold.  While I’m anxious to get back to the classroom, I think a room of 28 screaming children would be a little much for me.  Hopefully as time progresses I can do a little real estate and some subbing.

For now, I’ll continue singing Destiny’s Child “Independent Women,” throwing my hands up in the air.

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2 month MRI & follow-up

The MRI on Monday went really well!  I almost freaked out when I was told I was being put in the small MRI machine, but I talked myself out of it.  It’s all about deep breaths and not opening your eyes.  It also helped that the tech, Sue, was extremely friendly and informative.  Sue put earplugs in both of my ears to hide the noisy machine.  I thought to myself, “Sue, save yourself an earplug.  I only need one,” (ha!) but I let her do her job.

After the MRI, I met with Dr. Anderson.  He was EXTREMELY happy with my progress.  He said out of the 35 years he’s been working at Loyola he has never, I repeat never, seen someone with facial function as strong as mine after a tumor the size of Trudy removed.  It made me feel special. 🙂  He also said it made him feel good about the job he did.  Duh, he did an amazing job!

Next, we looked at my MRI results to see what is left of Trudy.  As he had told me post-surgery, he had to leave .5-1% of Trudy in there because it was just too close to my facial nerve.  I thought I wouldn’t even be able to see Trudy, that rude tumor, on the MRI scan.  However, I could still see a small ball on the scan believed to be Trudes.  She is about the size of a chickpea.  He said it is hard to tell if this chickpea-sized white blob is all tumor or some fat too from the fat graft (they both appear white on the scan).

We are on a watch-and-wait basis with Trudy now.  I will have another MRI in January to see if she has disappeared, stayed the same size, or grown.  Dr. Anderson said that based on her location he does not anticipate growth.  If she does grow, he will “zap” her with radiation.  Again, since the leftover-Trudy is on my facial nerve, the radiation could mess with that, so I am hoping she shrivels up on her own.

Anna, Dr. A’s physician assistant, reprogrammed my shunt on Monday as well.  Since the shunt has magnetic parts to it, it gets shifted around a bit during MRIs.  After any MRI, I will have my shunt reprogrammed.  It only took a minute and didn’t hurt or anything, so it’s no biggie.  My shunt regulates the amount of fluid drained from my brain, so it’s important to make sure it is at the correct setting.  We don’t want too little or too much fluid drained.   Like Goldilocks and the Three Bears’ porridge, we want it “juuuust riiiight.”

As for ole shunt?  He’ll be sticking around!  Although my shunt isn’t totally necessary anymore, Dr. Anderson said there is no reason to remove it either.  He asked if the shunt bothers me and since I said no, we’ll be keeping him around cuz he’s a good guy.  Should I name ole shunt too or am I just getting way too weird now?  Any suggestions??

MRI Monday

Today is my first MRI following Trudy’s departure.  Like I had previously posted, we’ll find out if she has shriveled up or the 0.5-1% of her has stuck around or, ugh, I don’t even want to say it—grown.  Obviously, I am hoping there are zero signs of her overstaying her welcome.  I am also hoping I don’t have a freak out when they put me into that claustrophobia trap.  Fingers crossed ALL goes well there!

My shunt is being reprogrammed today too.  Yeah, remember that thing?  I feel like all I ever talk about is Trudy (who deserves NO attention).  Poor ole shunt gets no attention anymore.  My shunt’s still around!  I will be discussing with Dr. Anderson what the next steps with that are (meaning how often do I have to have this thing reprogrammed, do I need to have this forever, what is its purpose now, what is the removal surgery like, etc?)  I have mixed emotions about ole shunt.  I would prefer to not have it the rest of my life, but then again, it saved my life.

It doesn’t really bother me; I just have a huge bump on the back of my head from it.  It’ll become one of those annoying things I’ll have to explain every time I get my hair washed before it is cut.

Hair wash girl:  “Do you know you have a bump on the back of your head?” (Thinking it’s a tumor or that I got clocked in the back of my head in a fist fight—judging me).

Me:  “Oh yeah, that’s my shunt.”

H: “What’s that?”

M: “Like a drain.  It was used to drain fluid from my brain when I had my brain tumor.” (Trying to really freak her out).

H: “Oh…”

[Awkward silence].

What does this “reprogramming” consist of?  I’m really not sure; I’ll let you know.  Here’s a pic of how ole shunt is healing.  My hair is gettin’ pretty long! (7/18/13, 8/15/13, & 9/30/13)

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Two months tumorless

Well folks, it’s officially been two months since my dreadful surgery on July 23.  Happy two-month tumorless anniversary to me!  To say the body heals quickly is an understatement.  Look at me the day after surgery—woof!  My face was tremendously swollen (you can barely see my eyes!) from that trauma of the brain surgery and the many medications, and that facial nerve of mine was extremely weak.  Pretty unrecognizable I’d say!  

I NEVER thought I’d post a picture of me like this (for obvious reasons), but I want people to know there is life after brain surgery!  It’s beyond scary, but I got through it!

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And here I am today, hi!  I know I have man-hands…

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Anyway, all in all, I’m feeling pretty well.  I’m still getting used to not having hearing in my left ear, but I am adjusting.  People say when you lose one sense, other senses become stronger.  This holds true for me in terms of touch and taste.  I am now ticklish (as I had previous posted about during my pedicure experience), and I feel as though I am more sensitive than ever to spicy foods.  I was always wimpy with spicy foods, so who knows…?

I can tell my nerves are still healing because I am still lacking feeling on the left side of my head.  When I wash my hair, I can’t really feel my hand massaging the scalp.  Also, the left side of my tongue and gums feel a bit numb.  As I have learned, this is normal.  Nerves take a long, long time to heal.

The next step is finding out Trudy’s status.  My doctors had to leave a little of Trudy on my brainstem (about .5-1% of the tumor).  This is quite common with how large she was and where her fat butt was located.  I have my first follow-up MRI and appointment with Dr. Anderson next week.  During the MRI the doctors will see if Trudy shriveled up or is still hanging around.  She better not be; she ain’t welcome!

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