Monthly Archives: August 2013

Stamina

This week I haven’t had to see any of my docs.  Since I have more free time, I’ve been trying to build my stamina by getting out more.  I find myself tiring easily over the smallest tasks.  For example, after putting clean sheets back on my bed, my heart was pounding and I was really out of breath.  Or yesterday, I was standing at the sink doing dishes for 5 minutes, bending over to put them in the dishwasher, and I felt exhausted.  It’s time I build my strength back up!

stamina

(The teacher in me liked this clip art I found when I googled “stamina.”)

Over the weekend I went to Target and True Value with my mom to run some errands—ooh fun!  (I know you’re jealous).  It wasn’t much, but at least I got up and walked around a bit.  Then on Monday I went to Dairy Queen with Katie and Rick.  I seriously have been eating ice cream every night since surgery, no joke.  But hey, I’m all about listening to my body.  I can’t help it that my body keeps saying, “feeeeed me iiiiice creeeeaaamm!”

Today I put in a pair of contacts today for the first time in over a month.  They’re a pair Dr. Sacks, my Costco superhero, gave me before surgery, gratis, no less (the weaker prescription), and they seem to work just great!  That will seriously be the strangest thing if my prescription did change for the better, and continues to stay the same post-Trudy.

Speaking of Dr. Sacks, my mom went to Costco yesterday and spent 20 minutes talking with and thanking Dr. Melanie Nichol, the optometrist who hired my superhero.  She said she’d heard about me, the girl who had the tumor that Dr. Sacks discovered, but Wom filled her in on more of the details.  She also mentioned that a friend of mine visited their clinic for an eye exam.  This friend of mine was “bummed” to find out Dr. Sacks wouldn’t be doing their eye exam.  Bummer is right—he is the best!  So now I ask, who are you mystery friend?!

Last, I think my weak facial muscle got better over the past week too!  Yahoo!  Thoughts???

2013-08-19 19.15.37 2013-08-28 11.30.56Please ignore my messy hair.

Out and about

Yesterday was my first big outing, and Ryan took me to lunch.  We tried out this new sub sandwich place in Mount Prospect called Firehouse Subs.  It was really good, but boy, it was weird being out again.  As soon as I walked in, I felt like EVERYONE in there was staring at me, (and it was pretty crowded.)  In my head I was like, “Am I walking weird?”  “Can they see my scar?”  I’m sure it was just me being paranoid again, but it was still a super strange feeling.

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Everything seemed okay and normal until I went to order.  I could barely hear the girl at the register!  With their kitchen making noise, music on (it wasn’t even blaring), and people talking, it was really hard to hear anything.  I was about to “cup” my right ear, but I thought that was a little much.  I ended up just turning my head slightly to the left so my right ear was facing her and it was fine.

Once Ryan and I sat down, and I was across from him, I could hear him perfectly, but that’s certainly going to take some getting used to!  I was thinking to myself, just wait until I go to a much louder establishment!  I really won’t be able to hear anyone unless they are right next to me (and on my right side of course!)

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On a positive note, I was able to do all the walking by myself without having to hang onto to Ryan for balance/support.  That was a big milestone for me!  Now that I’m walking around and doing more physically, I find my body and muscles are starting to hurt, especially the two incisions on my tummy.  My mom said that is normal because my body is used to being pretty stationary, and she’s pretty much a doctor, so….

As long as these feelings are typical, I’m okay with it!

1 month

Well, it’s been 1 month (4 weeks) since surgery and we sent Trudy on her way.  It’s hard to explain the way I felt when I first arrived home, but all I can come up with is “complete shit.”  Now I literally feel like a new person.  I can walk, talk, smile, laugh, eat…you know, normal human things.  Like I said yesterday, I’m still not 100%, but I’m gettin’ there.

I could not have gotten through it without ALL OF YOU!  From the bottom of my heart, thank you for all your kind words, positive vibes, well wishes, gifts, flowers, cards, and most importantly—prayers!  I am still so overwhelmed with the amount of support I have received through all of this.  I never expected it, but it is/was much appreciated!  I am SO damn lucky!

THANK YOU, THANK YOU, THANK YOU!!!!  Love you all! 🙂

“No restrictions.”

WARNING:  Really long post, but a good update!

This afternoon I had my one-month post-surgery follow up with my ENT Dr. Leonetti and one of his residents.  It went amazingly well!  He was extremely happy with how I am progressing and healing thus far.  The best news?  He said I have “no restrictions.”  This means I can blow my nose again, drive again (maybe—I’ll explain later), sneeze again, carry things again, etc.  All these tasks seem so simple, yet I was unable to perform them while recovering because I couldn’t strain my body in any way and was on heavy medication.

However, just because he gave me “no restrictions” does not mean I’m going to join the circus.  I still do not feel 100%, so I am going to take things slowly.  Oh, I almost forgot the best part!  The doctor gave me the go-ahead to leave my house to do something [fun]!  My first outing will be this Wednesday with Ryan taking me to lunch!  To be honest, I am terrified to leave the house.  I feel like Sheila on Shameless (see—I watch some good TV), you know, Karen’s mom who is an agoraphobic?

sheila

I know everything will be just fine, but just imagine not going anywhere, literally anywhere (besides a hospital), for a month, and then being told, “Go ahead!  Go out!”  It’s scary!  I think it’s a step in the right direction now that I have “no restrictions,” easing my way in since I’m still a little weak and need to work on my balance.

Now for the other “less fun” news—Dr. Leonetti said my incisions are healing wonderfully.  He reminded me that a scar takes 5 days to heal, but a wound takes 6 months, so I must still be very careful with the wound in/on my head.  He also said the ringing in my ear “should” go away, “eventually.”  Whatever that means…

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Part of my skull was removed, but it is nothing to be worried about.  To put it simply, the doctors took the fat from my belly and put it in the hole in my skull.  This is covered with muscle and the fat should turn into scar tissue over time.  All of this fat is also causing my left ear to protrude obviously more than the other one.  He said that given time, this should also settle and become equal again.

As for my weak facial nerve?  That’s getting better too.  He was SO pleased with how much it has strengthened already!   They rank weak facial nerves on a scale of 1-6 and mine is a 1, meaning the best it can be.  It has a little bit further to strengthen, but it too, should go back to normal in time.

me

I was also referred to a neurologist who will assess whether or not I had a true seizure or just a vasovagal episode.  Read more on that here– http://www.mayoclinic.com/health/vasovagal-syncope/DS00806.  Hopefully it is the latter; otherwise, I may not be able to drive for 6 months if it was a true seizure.  This would make things pretty difficult for me still having to depend on others when I’m trying to work on my independence!

Last, TMI ALERT!  I thought I felt something in my left nostril and told my doctor it felt like a hard booger that I just couldn’t get at.  (We’ve really gotten to know each other well over the past month)!  After a disgusted look from him, I asked him to “take a look” up there since I am paranoid about everything now.  He said, “I hate noses, but fine.”  Everything was a-ok!  Even the resident Doogie Howser got a laugh out of that one!

Feelin’ stronger every day

Did you start singing Chicago’s song when you read the title? Good, it’ll be stuck in your head all day! Muahaha!

I thought I would have a positive post today after those horrid images of Trudy I put up on Wednesday. Many of you said how unbelievable the images were, and I completely agree. Every time I look at them it seems surreal. I wonder when I’ll really feel like I’m looking at images inside my very own head. Maybe in a year? Maybe never? Maybe it’s all a bad dream?! Ha, I wish!

Anyway, I am happy to report that I am feeling SO much better than last week. I have been walking around the house a lot lately and I’ve been able to go up and down the stairs without a spotter. I’ve also been spending more time outside, even though it was freezing this week- WTH?! I’m so glad to see it’ll be warm again next week! Fresh air is great for the soul. Last, I am weaning myself off taking the painkillers every 4 hours. I am taking them “as needed” instead, since I don’t feel as much pain anymore. Hooray for that!

This coming Monday, I have my first check-up with Dr. Leonetti, my ENT. I haven’t seen him yet since surgery (besides his quick hello at the hospital when I was all drugged up), so I’m anxious to hear what he has to say about my progress. My mom and I have come up with a list of questions for him too- lucky him. Here are some of my most important ones:

  1. Is this obnoxious ringing in my left ear ever going away?—If I’m going to be deaf in my left ear, I’d like complete silence, please and thank you!
  2. Is part of my skull removed?—I don’t really care, I’m just more curious than anything. However, if part of it is removed, I suppose I might have some kind of soft spot I should be aware of in case I ever fall.
  3. Will I need physical therapy?—I think I’m walking okay, but I still do not feel 100% normal. Then again, I forgot what normal feels like since I was dizzy for so long! Damn you, Trudy!
  4. When can I leave the house to do something?—It’s not fun leaving the house if you’re just going to the doctor (which is the only time I have left)! I want to know when I can go out to eat or something. Haha I’m such a fat kid at heart, always thinking of food.
  5. Why do I burp so much now?—TMI? Sorry guys, but I was never a “burper” and now I feel like I burp all the time. It’s disgusting, and I’d like to know if I’ll be like that forever. I find these types of people quite repulsive.

I have other questions too, but that’s enough for now. Hope you guys have a great weekend! I just ordered some DVDs for Saturday night- Saved by the Bell: Hawaiian Style & Saved by the Bell: Wedding in Las Vegas that I’ll be watching with my sister, Katie. NERD ALERT! We’ll be those annoying people quoting the entire movies. Good thing it’ll only be us, because most people HATE us when we do that.

sbtb

Good news!

My CT scan report came back normal/fine.  Dr. Anderson’s nurse said my ventricles are “down” from pre-surgery, so there is no indication of hydrocephalus (fluid on the brain, which I had prior to surgery, hence the shunt implant.)

This is how the Acoustic Neuroma Association, ANA, explains the function of the ventricles.  “Functions of the cerebral hemisphere are affected only with large tumors (like Trudy), which may compress the brainstem, (which she did), that the normal flow of cerebrospinal fluid (CSF) is obstructed along its normal course from ventricles, through the brainstem, to the surface of the brain.  This causes enlargement of the ventricles, or hydrocephalus, which can be life threatening.”

While at Loyola Monday, we requested copies of my imaging tests.  They were given to us on a CD, and I am being brave enough to share some rather disturbing images of Trudy pushing on my brainstem as well as my large ventricles.  You can also see where she grew out of my internal auditory canal.  This explains many of my pre-surgical symptoms, such as dizziness, headaches, and tinnitus, or ringing in my ear.  It does not seem real that I lived a normal life with a tumor THAT BIG in my head!!

P.S. If you couldn’t figure it out, Trudy is the big white blob.  !$%*#@&^!!!!!!!!!!!!  HOW FREAKY IS THAT?

Trudy 1

Trudy 2

Trudy 3

Happy Anniversary, Mom & Dad!

In other non-tumor related news, yesterday my parents celebrated their 34th wedding anniversary!  They can’t believe they’ve put up with each other for all those years, haha!  To celebrate, and to thank them for being such wonderful parents, my sisters, brothers-in-law, boyfriend, and I did a cookout at my parents’ house.  It was nice to get outside and spend time with family; it’s a nice a change from my monotonous days of lying in bed reading or watching TV.

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I especially love watching my niece, Nora, play out in the backyard.  She is really developing her own funny personality!  Yesterday she was playing with Duplos (those bigger Legos) building towers.  When she couldn’t quite connect two pieces, she’d say, “almost!”  Then when her towers got too long, they would break in half, and she would start to whine and throw the Duplos.  We couldn’t help but laugh.  Is that mean?

She really does know how to cheer me up though!  Whenever I ask for a hug or a kiss she will always give me one (lately).  I think it’s because she can sense something is wrong with me.  My sister says “give Aunt Goo a gentle hug and kiss,” and she really is gentle!  She has seen all my scars and now she always says, “Aunt Goo owie,” when she sees me.

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This afternoon I’m going for the CT scan to see about my head pain.  My mom gave me a new pillow and it seems to help.  The pain does not seem as extreme as last week, but I’d still rather be safe than sorry. I’m not taking any chances!  I’m telling you, I’m so paranoid now about every little thing.  I’m going to become a hypochondriac after this!  I’ll keep you all posted about today’s test when the results are available.

P.S. Can we talk about how awesome parents’ outfits were for their wedding?  I mean seriously, my mom’s hat and my dad’s ivory suit with taupe accents?  Amazing.

Other news

For today’s report, I have some good news and some bad news.  Most people like receiving the bad news first, so I’ll begin with that…

Within the past 3 days, right before bed and when I wake up in the morning, I have had some pretty bad head pain.  It’s on my entire left side (side of surgery).  The strange thing is it seems to go away once I’m up moving around or just sitting upright in a chair.  However, the pain is so bad in the middle of the night that it wakes me up and it really hurts to even shift in bed.  I would compare this new pain to how my head felt right after surgery, so it really concerns me.  I called Loyola today and spoke with Tricia, one of Dr. Anderson’s nurses.  They ordered a CT scan just to be on the safe side.  She said that since I don’t have any other symptoms, such as nausea or vomiting, she isn’t too worried about it, which is promising.  They just want to make sure the ventricles in my head are normal.  I am scheduled for another CT scan on Monday… piece of cake.  Fingers crossed everything is okay!

As for the good news, I have experienced something positive of being deaf in my left ear!  My neighbors are getting a patio put in (sorry to complain, Kristen & Tim, I know it’ll be beautiful when it’s done!  You better invite me over for cocktails :)).  It is quite noisy when the workers have their machines on.  I’ve learned to sleep on my right side so that ear is on my pillow (covered) and my left ear is facing out.  This really cuts out the noise, and I have been able to sleep quite nicely during my afternoon nap.

Also more good news—I finally feel like I can read again!  For the first two weeks after surgery, it was really hard to read anything other than magazines with short amounts of text.  You know, mostly about important things like the royal baby, where Kim Kardashian is hiding, or how Des, The Bachelorette, accepted a proposal from Chris after being totally in love with Brooks just days earlier!

I have received so many books from you guys and I can’t wait to read them.  I started with a novella, Shopgirl, by Steve Martin.  [Thanks, Karen & Craig!]  It’s one of those books I can’t seem to put down and now I’m almost done!  Since I feel totally unproductive because of the length of my recovery, I want to read as much as I can.  Mentally, it makes me feel a whole lot better about myself than just lying in bed watching TV all day, that’s for damn sure!

shopgirl

Priceless

As most of you know, I received my Master of Arts in Teaching in May.  The lucky recipients (haha) were a fourth-grade class in Mount Prospect.  Since then, l remain in touch with my awesome cooperating teacher, Pam.  Yesterday Pam left the most priceless gift on my doorstep that literally brought me to tears—don’t worry they were happy tears. 🙂  She organized a group of my fourth-grade students together to create cards and a video for me!

In the video, they sang me two songs and each child had their own message for me.  It was the sweetest thing ever!  Most of them looked so nervous saying, “I hope you get well soon, Ms. Nugent!” followed by them quickly running away from the camera; it made me laugh.  They still look and sound like the same kids I taught.  I am so thankful for this video.  It gave me hope that I will find a teaching job once I am through all of this crap because I LOVED seeing “my kids” again, even if it wasn’t in person.  They were such a wonderful group and I was lucky to have such a caring mentor, too.  Thank you so much, Pam!

All the cards were so cute and really reflected each child’s personality.  Here is one amazing example of a card from one of my students.  As you can see, she has a beautiful talent for art and making origami; she made me lots of it during student teaching!  I knew exactly who this card was from the minute I opened it.  How sweet is this?!

cardIf you click on the picture, it’ll get larger, and you can read her actual card.

ANA membership

Yesterday in the mail I received an envelope from the Acoustic Neuroma Association, or the ANA.  My sisters, Lin and Katie, thought it would be a good idea to sign me up for a year-long membership to the ANA; I absolutely agree!  Thank you so much, sissies!

In the envelope were a lot of informational packets about acoustic neuromas, a monthly newsletter, and also a list of people who are on the “willing to talk” list, about 50 of them.  A lot of the information about acoustic neuromas I was already pretty familiar with from my doing my own research, but the newsletter was very intriguing.  In the newsletter, there were several stories from people who have had acoustic neuromas relating their experiences, along with the latest in acoustic neuroma studies and surgical procedures.  There was also quite a bit of information about the upcoming ANA Symposium; it actually happens to be this weekend out in California.  Maybe someday I will go!

I found the list of people who are willing to talk extremely interesting.  They are from all over the country.  The list gave their name, contact information, state, size of their tumor, treatment(s) performed, and when they had their treatment(s) completed.  Trudy was almost as big as the biggest tumor listed!  However, someone did have a larger one sizing in at 5cm; Trudy was beat by 1mm!  There is actually a female from Illinois who had that 5cm tumor and her treatment was performed in 2007.  I might reach out to her to see how she is doing now and just to hear another story.

It seems strange reaching out to a complete stranger, but that’s what they’re there for, right?  I think it’ll be nice to hear from someone else who went through a similar situation and especially to see how she is doing today.  A lot of people on the list had gold eye weights post-surgery.  These are used to correct an eyelid that will not close all the way from facial paralysis.  I feel so fortunate that I do not need that (knock on wood).

I truly feel I had the best possible doctors that did such an amazing job removing 99% of my tumor.  I was talking to my mom and sister today and I actually feel lucky that I’ll walk away from this with just hearing loss in my left ear.  My weak facial muscles seem to be getting better every day too!  Even Dr. Anderson said he thought it improved when I went to see him last week.  With that being said, I realized I never showed you guys my incredible doctors.  Here they are—Dr. Douglas Anderson (neurosurgeon) and Dr. John Leonetti (ENT)!

anderson leonetti

 

P.S.  I think I am finally ready for visitors.  Short visits only though!  I get really tired from talking 😉