What rhymes with Wilbur?

This is probably going to be one of those stories that I go in circles about until I finally get to the point...I promise there is a point to this.

One of my favorite reality TV shows in The Amazing Race mainly because I'm such a travel junkie and want to be able to go to all the places the show goes.  Catharine and I decided years ago (we won't say how many) that we were some day going to try out to be one of the teams on the show, and we will...someday.

But the reason I bring this up is because Travelocity is the major sponsor for the show and there's all these commercials with the Roaming Gnome.  For those of you who don't know, the Roaming Gnome has his own action figure that you can buy on Amazon.  People buy this figurine and take the Roaming Gnome with them on trips and take his picture in various settings doing a variety of activities.

Now I kind of have some experience making photos like this.  When I worked at WDW, I bought Stitch because he's just so cute and is such a troublemaker.  I posed my Stitch in and around the apartment and made up captions for all the photos.  Below are two of my favorite pics:

Stitch thinks he's the Cookie Monster

Stitch can't stay out of trouble!! Got caught playing in the box but couldn't escape the bubble wrap!

So it probably shouldn't come as a surprise that I would decide to do something similar with Wilbur.  Many of you have seen the picture I posted in a previous post about the pitiful-looking Blobfish.  (I'm still kind of snickering every time I see the photo)  Meet my "artistic rendering" of Wilbur. (Remember I always say that I am a creative person but not an artistic person):

My painting of Wilbur

Wilbur will be making appearances all over the place from this point forward.  In my favorite restaurants, with some of my favorite people, I might even have to introduce Wilbur to Willie Bob (the cat) when I get to visit NC next time.

Wilbur's first outing (this is the reason for the question What rhymes with Wilbur?  I need another word to go with Wilbur that has something to do with travel -- Roaming Gnome wouldn't be the same without the roaming part, right?) was to Snowbird's Oktoberfest Celebration.  Now before any thoughts or comments about beer starts, keep in mind I cannot drink alcohol while on the medication I need to stop the seizures (Sigh!!)  So this was really just a chance to eat German food, listen to German music, enjoy the mountains and listen to the Alp Horns play! (where the deer and the Alpen Horns play, where seldom is heard a discouraging word and the skies are not cloudy all day --- come on, somebody knows this song though I did change antelopes to Alpen Horns on purpose.  I now can't think of ANY of the other lyrics or the actual name of the song!! It just came to me that Alpen Horns fit nicely in place of antelopes, ARGH!!)

I found someone who appreciates German culture as much as I do, Kristin!! She just started at the U and is from Miami so this week in Salt Lake is already winter to her!  I just shake my head and warn her she hasn't seen nothing yet!!  Our first stop was the Oktoberfest Halle, home to the German food and the polka band (I think they're called the B&B Allstars? IDK).  Wursts were on the menu along with real sauerkraut (not the stuff you normally buy in the store) and mustard, lots of mustard.  I tried the spaetzel (is that how it's spelled?) and Kristin got potato pancakes.  We got different sides so we could each try both.  Wilbur decided he wanted a piece of the Black Forest Torte.  I didn't really argue with him (neither did Kristin).

After lunch, we headed up on the Snowbird Tram to the top of Hidden Peak (11,000 ft in elevation) to hear the Alp Horns play.  It was 59 degrees when we left the base, it was 40 degrees at the top with a wind chill that made it feel like 30 or below.  I actually had to head into the warming hut today.

But at least we still got to hear the Alp Horns play!!  And one of the players was a lady who'd played the Horn last year!!  I think even these guys were freezing up there this year!  They didn't play very long.

I took a lot of pics of the surrounding landscape, but I'm probably going to post all of those on Facebook.  But stay tuned for more pics of                   Wilbur's Adventures!!  (Come on people, you gotta help me come up with a name!!  Fill in the blank!!)

UPDATE ::  October 1, 2013

I think the winning title is going to be "Wandering Wilbur" provided by my brother Nathaniel.  Nothing else just seems to roll off the tongue as easy.

Just for a side by side comparison......

I really wanted to see a giraffe but...

When I moved to Utah in August 2010, one of the first things I did as a westerner was travel from Salt Lake to Portland, Oregon for the Ecotourism and Sustainable Tourism Conference (ESTC).  My advisor (or who I hoped at the time would become my advisor) gave me a code to get signed up for the conference, I booked a hotel room in a nearby hotel, and planned my road trip.

Multnomah Falls, 2010

You may or may not know that for two years before I moved to the West, I worked as a Drive Vacation Specialist (later known as a Travel Sales Specialist II) at AAA Carolinas.  I had the opportunity to plan road trips for a variety of clients heading out on the road to see our beautiful country.  I was secretly jealous of several of the trips I planned for going to places I was dying to visit but wasn't sure when I'd ever have the time or money to visit.  Portland was one of those places.

Mt. St Helens National Volcanic Monument, September 2010

The Portland ESTC conference was really the first conference I'd been to as a "professional" so to speak.  I met people there that I still keep in contact with today.  I extended my visit and took a day to drive to Mount St Helens National Monument 30 years after the eruption (I am the daughter of a science teacher, after all, who was teaching Earth & Environmental Science at the time, you pick up things over the years).  Two very important things happened on this trip:  I got involved with The International Ecotourism Society (TIES) and realized that I love the Pacific Northwest.

My little buddy from Mt. St. Helens

The reason for this little walk down memory lane is because my involvement with TIES has continued and grown stronger since 2010.  The 2011 Conference was held in Hilton Head, SC and I was able to attend as a conference volunteer.

ESTC 2011 Crew -- L to R:  Julie, Mercedes, Aine, Me, Dru

I was involved in 2012 with the ESTC again, this time as the volunteer and event coordinator.  I was responsible for interviewing, hiring, and training all the volunteers who helped out with ESTC12 in Monterey. (I added in the event coordinator side because there a lot of "other duties as assigned" once the conference got going and I didn't think volunteer coordinator covered everything).  I had an awesome group of people to work with (I don't care if that makes me sound like I'm bragging on myself!  I'm the one who found them and brought them onboard, so there!).  Monterey was a fabulous host destination!!

ESTC 2012 Volunteer Crew Photo Courtesy of Julie Harper

So that leads us to this summer (which just ended mind you, we are officially in Autumn), where I started working for TIES as the Communications Director.  ESTC13 starts on September 24 in Nairobi, Kenya.  I was supposed to have flown to Nairobi on Sept. 18.  Because we didn't know what the situation was going to be with Wilbur when decisions had to be made, I am still in the United States, safely in Salt Lake City.  I know that my team made it safe and sound to Nairobi and to the conference venue, the Safari Park Hotel.  On Friday, a few members of the team even got to go see some wildlife (No, I'm not pouting too much, I promise).

Giraffe, photo credit Amanda Gardner

But after the horrific and crazy hostage situation that took place over the weekend, I'm thinking that things always happen the way they do for a reason. (If you have no clue what I'm talking about, have you been under a rock this weekend?  Anywho, here's a link to the CNN Updates).  My heart goes out to the families of the deceased and injured.  My prayers go out for the safety of the last remaining hostages who will hopefully be freed in the near future.  So, from now until the end of the month (which is when my team will arrive back in the United States), I'm asking that anyone reading this please say some additional prayers for the TIES team in Nairobi and the ESTC13 delegates who are traveling in from 40 countries worldwide.


UPDATE ::  October 1, 2013

I am super happy to report that the ESTC13 conference went off without a hitch!! We've been getting a lot of positive feedback from attendees about the conference.  I am also happy to report that all of my coworkers arrived safely back in the US of A!!!

We're ready for the next chapter!  Bonito, Brazil here we come!!

Never Doubt the POWER of Prayer!!!

In a letter dated September 12, 2013:

University of Utah Health Care has determined that you qualify for a full charitable write off for services provided prior to the date of this letter.

I know my Momma's dearest prayer was that I'd go in for my appointment with the surgeon and Wilbur would no longer be an issue, having simply disappeared through the power of prayer in two weeks time.  And I know that miracles can and do happen every day!  (But I knew that Wilbur wouldn't let go of me that easily, I mean it has taken two years for me to even acknowledge his existence).

So my biggest concerns have always centered around paying for the treatment I needed since I have no insurance (though I am definitely enrolling in whatever I can on October 1).

When I was in the hospital, once I'd been moved to the Observation Room in the ER, I received a visit from the financial aid office of the hospital.  I worried about whether I could even get on Medicaid in order to get some help (because I had to keep answering "no" to all the Medicaid questions they asked).  Then, the lady told me that the hospital has a charitable foundation arm that can sometimes cover some or all of a person's expenses.  So that's what I started praying for:  "Please, Dear Lord, let me qualify through the foundation, please!"

So I am EXTREMELY happy to report that my first prayer (in what has become a long line of prayers)  has been answered!!  Thank you, everyone for all the love and support so far!!  Please continue to keep me in your thoughts and prayers!!  I ain't rid of Wilbur yet!!

UPDATE :: October 1, 2013

Yesterday I received the billing statement that finally told me how much money I would have owed if it wasn't for the charitable write off.  The total was almost $13,000!!!  I'm so grateful for all the prayers and thoughts being sent my way!

Wilbur's Image...I'll stop laughing at some point...maybe!!!

From National Geographic Photo by S. Humphreys, Australian Museum/NOAA

Sometimes your Facebook News Feed has some pretty incredible updates, or at least mine seems to.  Meet the world's ugliest critter, the Blobfish!  This guy was chosen as the mascot to raise awareness about the endangered status of ugly creatures everywhere!  (I linked National Geographic to the news article with more info).

But what really got me laughing is that FACE!  I mean it's got eyes, a huge honker, and a frowny face and it's even pink.  All I could think was THAT'S WILBUR!!!!!  This is exactly how I imagined him (though the Blobfish is bigger than Wilbur, the expression is perfect!!)

I need a poster of this!!! I am seriously going to be laughing for DAYS about this!!!

Thanks, Nat Geo!  Find of the Day!!

Two Strong Stubborn Southern Women

In the hospital, I remember Mercedes being the first to use this word to describe me and my handling of this situation. I've since heard it over and over both in person and in the posts of friends and family online.

STRONG

But I have to admit, in this context, I don't think I really know what that word means.  I've never really interacted with a lot of people who get this kind of news.  So I don't understand what the expected reaction is or how to respond with strength.  I just keep thinking "it is what it is and there's nothing I can do about it right now."  There's no reason to scream and shout and ask "why me?"  It's happened, I can't change it.  The doctor said that there's a possibility that Wilbur has been with me for 5 or maybe even 10 years already.  Yes, I probably should have recognized that something was really wrong when Wilbur's temper tantrums started and gotten it checked out sooner.  But I'm a notorious procrastinator!

So again, I ask what makes someone strong in the face of adversity.  It's not a lack of crying, cause the Lord knows I have cried until my eyes hurt several times since this ordeal started.  I called Catharine at 4 a.m. my time the day after I got out of the hospital crying so hysterically it's a wonder she understood a word I said (that was the moment the initial shock wore off).  

For some reason, the image that keeps popping into my head is the Willow Tree from my Grandma Hattie's front yard.  You know the branches of a willow don't seem very strong and it's not a good tree for climbing (her Magnolia tree was much better plus you had the added benefit of being hidden by the thick glossy leaves).  But willows have deep roots because they are always seeking sources of water.  And since the branches are pliant, it's the willow that can stand up to a hurricane.  While other trees break, the willow bends.

I also question whether it's really strength on my part or sheer mule-headed stubbornness!  I'm sure there are people reading this right now who would be more than happy to tell anyone just how stubborn I am (cough, cough...Danielle, Mercedes, Amelia, Catharine, Jamie, I might as well just say anyone who has spent a prolonged amount of time in my company!)  I will be upfront in saying that I know I am stubborn and that I get it honest!!  I had the pleasure of growing up with two Grandmas who were hands down two of the strongest, most stubborn Southern Matriarchs you would ever hope to meet in your life!! 

I mean let's think about this a minute, Hattie Beatrice Poole Cooke was born in October, 1911 and Minnie Mae (Macie) Swink Ledford was born in March 1912.  Think about all the events in history that they witnessed and survived!!  World War I, the Great Depression, World War II, Korean War, Vietnam, the Civil Rights Movement, the Space Race, the Cold War, the list goes on.  They both learned how to drive cars when cars were still new technology, they saw the first televisions, first "talkie" movies, the first color televisions and movies, cordless phones, computers, cell phones.  It's overwhelming when you really start to think about all the changes they witnessed in their lifetimes.

With Ayako at the Celebration of Cultures, ESTC12 Monterey, CA

 But again, I digress.  When it comes to stubbornness, both women had it in spades!!  One of my favorite stories about Grandma Macie was from when she was young, still a teenager.  The short bob hair style had just come into fashion and someone in her circle had gotten their hair cut.  But her father wouldn't let her cut her hair because it was so thick and long and beautiful.  She got it in her head that if she went and filled her hair full of cuckleburrs, well then her dad would just have to let her get her hair cut.  (This is explains so much about why I am the way I am, doesn't it?)  Instead of getting her hair cut, she got sat down in front of one of women in her family who had to go through and pull out every last cuckleburr!

I spent a lot of time with Grandma Hattie as a teenager.  I wonder if she knew then that I'd be the one to carry on the Dried Apple Fried Pie tradition.  MawMaw Hattie couldn't hear very well for at least the last ten years of her life or so, but she sure didn't want a hearing aid.  So she learned to read lips. (Again, if you ever wondered where I get it from, here it is)  If Hattie didn't want to hear what you had to tell her, she would deliberately look away from your lips or focus on some point over your shoulder so she didn't have to listen to you!!  I saw her do this to my Momma and other family members time and time again!  It was usually all I could do to keep from laughing out loud because I recognized when she was doing it!

I'd like to think that perhaps some of my strength comes from having known and spent so much time with these women.  The picture I posted of me dressed in 1940's attire was a way for me to pay tribute to them at ESTC last year.  We held the first Celebration of Cultures and everyone was invited to dress up in a way that represented their heritage.  I kept thinking since both sides of my family have been in the US since the 1800's, that coming up with an outfit that paid homage to a way my Grandmas might have dressed would be the most appropriate outfit for me. (Plus I had always wanted a half-hat and found that fabulous blue velvet one at a vintage store in Monterey)

So what I really want to know is:

What do you consider strong?

Who do you look up to as figures of strength?  What attributes do they have?

How do you think I've shown strength? (I promise I'm not fishing for compliments or anything, I genuinely want to figure out how my actions are perceived as strength)

Let me know what you think...

Diagnosis...

After two weeks of not really knowing what was going on and going off of what the residents told me in the hospital, I finally got some answers.  Yesterday, September 11, 2013, I finally got to meet with the neurosurgeon, Dr. Richard Schmidt from the University of Utah hospital.  In filling out my paperwork beforehand, I went ahead and referred to Wilbur as Wilbur.  Mercedes and Danielle were both going to the appointment with me and I figured if I didn't say something upfront, we'd just constantly end up having to explain what we were referring to.  The nurse who showed us back to the room initially, Rob, asked how Wilbur was today right off the bat! (which of course we all laughed about)

When Dr. Schmidt came in, his question was "Why Wilbur? Why not Arthur, the astrocytoma!"  I informed him quickly that my Dad's name is Arthur so that name was not an option! (And anyone who knows my Dad would agree).  He later suggested Ollie the Oligoastrocytoma, but when I think of Ollie the only thing that comes to mind is Oliver Queen and since he's a hero who kicks butt and takes names, Ollie's not a good name for a tumor either.  Wilbur is Wilbur. Done.

Dr. Schmidt started out by explaining where Wilbur has made his home in my head and then went into the grading system of brain tumors.  Grade 4 is the malignant type usually cancerous that has spread from other parts of the body; also typically seen in people 60+.  Grade 1 is the most benign but typically develops in children and young adolescents and is caught and removed before adulthood.  So Wilbur is currently classified as a low grade tumor (probably a Grade 2 though they won't know for sure until they can biopsy the tissue.)  If want to read more, here are a couple of links Danielle sent me.

http://www.abta.org/understanding-brain-tumors/types-of-tumors/astrocytoma.html

http://hope.abta.org/site/DocServer/LowGradeAsx.pdf?docID=301

http://www.cancer.net/cancer-types/brain-tumor

Don't get freaked out by the last link!! It's just a good information source.  They DON'T think it's cancer!!!

The rest of this post is the (mostly) serious and (sometimes) scary outline of what is to come:

Step 1:  Because Wilbur has set up shop in a highly functional area of my brain that they have to be super careful with, I will be needing another MRI.  This one is called a Functional MRI, it's the one with fun colors that lights up when different parts of your brain are used.  This will be used to create a "road map" for Dr. Schmidt so that he knows where Wilbur has pushed things (since they're not in the right spot...I guess I can say I'm not right in the head now, can't I?)  Getting this scheduled and the results analyzed will probably take around six weeks to happen.  The stick in the spokes is that I have to make the financial arrangements to pay for the MRI before I can schedule it.  Let's hope I can perhaps get on short-term Medicaid so I can get this scheduled.

Step 2:  Surgery.  Despite my Momma's prayers that Wilbur would just go away in the two weeks since the diagnosis and I'd never have to go under the knife, surgery will happen.  They can't determine for certain that it's completely benign until they have tissue to biopsy and since they're in there anyway, they might as well take as much as they can while I'm there.  The tricky part is going to be using the road map to make sure that they don't paralyze me or make me lose my speech.  This is where the things go a little science fiction on me.  Dr. Schmidt plans to WAKE ME UP in the middle of the surgery and make me answer questions and move my right arm so he can know how much he can remove without doing more harm than good.  Momma said something like this could happen.  I think I literally put the phone down, put my fingers in my ears and started saying "I'm not listening to you!"  And you wouldn't you know it!! THAT's the procedure the doctor want to use on me! Part of me is completely freaked out at the concept and part of me is like someone better have a video camera handy because it's going to be WILD!!  If I remember ANY of it, there will be one crazy post about that!!  Holy Toledo, Batman!! Not sure I'm ready for that part...not gonna lie!

But the supposedly good news about doing this high-tech type of surgery is that my recovery should be reduced in the short term and any deficiencies that are present immediately after the surgery (say if my speech is somewhat slurred) should go away sooner.  So the therapy after surgery is technically Step 3. I will more than likely have problems with my speech and right-side mobility for awhile immediately following surgery but Dr. Schmidt seemed to think I would like recover those abilities completely.

Step 4:  No matter how much of Wilbur they manage to remove, chances are high that some part of him will remain with me.  That means that I will also have to undergo radiation or chemotherapy to shrink him down to size in the short term.  I may have to face the fact that after all this, Wilbur may still be with me for the rest of my life.  Even though he's slow growing, they may never be able to completely "evict" or "assassinate" him.

The timing for all of this is unfortunately still up in the air.  Assuming I can figure out how to get the MRI this fall, the earliest they can do the surgery would be December.  At that point, I'd probably end up waiting until January.  I know it may not be a popular issue right now with some people reading this, but the Affordable Care Act (Obamacare) may end up being the only way for me to get this surgery and avoid medical bankruptcy.  I haven't seen an actual bill for anything yet but just reading through the steps, all I see are $$$ adding up.  The way things stand now, if I don't qualify for Medicaid, I would have a hard time finding insurance at all.  And if I did find insurance they could charge me out the wazoo for it!  Under the Affordable Care Act, I can no longer be denied coverage or charged more because I have a pre-existing condition.  I want to have at least another 50 years with this brain and in this body.  So love it or hate it, right now the Affordable Care Act is working in my favor!

Wilbur gets some decoration...

I've figured out, after looking at the scans, that Wilbur seems to have situated himself just above my left ear and is hanging out there until I figure out how to get rid of him.

As you have probably realized, my hair is currently a lot shorter than it was this time last year.  That's because I grew my hair own so that I could donate to the Pantene Beautiful Lengths program.  I chose that program specifically because they partner with the American Cancer Society.  So I cut off my hair before I went home for Christmas last year and my Mom didn't even RECOGNIZE me at the airport!!! How awesome is that!! (I, of course, found the whole thing hilarious because I'd made a point of not saying anything to Mom about cutting my hair before I showed up).

There's a point to this, I promise.  Since then, I've worn my hair in an asymmetrical bob.  The right side is the long side and the left side (Wilbur's side) is shorter.

Well in the hospital, one of my first thoughts after finding out about Wilbur was "I'm going to have to shave at least half of my head!"  I don't know why I focused on that, but that was apparently what I needed to focus on in the middle of the night.  Mercedes encouraged this thought path by talking about how, since my hair grows so fast, I could totally pull off having designs shaved into the left side.  Perhaps stars like this...

Photo Courtesy of Beautifulearthcreature on Tumblr

Someone also suggested a lightening bolt, which I have to admit I kind of like the idea of.  But again, I digress and the shaving part of the show is probably MONTHS away, thank goodness!!  (On a side note, I've totally decided I should pull a Joseph Gordon-Levitt and at least do the first buzz myself even though I'll probably have a professional do the deed.  I'm not trusting the doctors with my hair, they're not professionals in that capacity.)

Summit Entertainment, 2011

This will obviously be the most drastic thing I have ever done to my hair and I prepped myself for YEARS before I was ready cut off the 9 inches that I donated.  The first logical step for me in the path to getting ready for the shaved look was, of course, to try dying my hair.  I didn't want to dye my whole head because I'm actually pretty happy with the color God gave me and I'll only have to shave half my head so why dye all of it?  I also figured if I was going to do this, it was a GO BOLD OR GO HOME situation.  

I know I probably quote Steel Magnolias way too much, but I just can't help myself!  I mean seriously, Julia Roberts, Sally Field, Dolly Parton, Darryl Hannah, Shirley Maclaine, and Olympia Dukakis, in one movie! (I'm not mentioning the men in the movie because you know it's all about the women in this film).  Sorry, there is a point to this too, I promise.  Shelby explains that her wedding colors are "Blush and Bashful" (I can quote this whole scene but I will refrain for now) because pink is her "signature color."  

I always joke that I don't have a favorite color, I have a favorite color palette and anything in the green, blue and violet family is in my palette.  So I decided since literally have of my wardrobe is green or blue that "emerald" and "sapphire" were my "signature colors" and those were the colors my hair needed to be dyed.  

You can really make out the green in this picture but the blue is kind of hidden because I have SO much hair!!  I actually really like it, though next time we'll figure out how to make the blue come through more.  First step towards preparing for Wilbur's removal is a success!!

Holy Wilbur!!! Sorry for the FB bombshell!!

Most of you who have spent any time in my presence probably realize that I am not the most patient person, nor do I sit still very well.  I feel like I am constantly moving, even it's just changing my position in a chair while working on the computer.  So imagine me, given something for anti-anxiety so I wouldn't fidget like normal, on a table that if it could have moved vertically, I would have been a good candidate for the next Frankenstein movie with the way they had my head and neck stabilized.  Again with the surreal...

It took an hour to do whatever it is they do with an MRI and part of the results were thing nifty little image.
**Warning don't look if you really don't want to see Wilbur**

Meet Wilbur, the tumor currently residing in the left side of my brain.

After I got the MRI results and the resident pictured here (not the ER resident who broke the news) had explained what I was looking at in a calm and rational manner, I was moved to an observation room still within the ER.  Once in the observation room, it was almost 3 a.m. which in my mind meant my parents would be awake soon if they weren't already.

I hadn't told my parents I was in the hospital before that because I wanted to wait until I knew something to actually tell them.  I'd never even told them about Wilbur's temper tantrums before, though I do think one or both of them had seen me in the midst of an episode without realizing it.  I always thought the episodes were stress related and were something I needed to mention to someone at some point in my life.  I never dreamed that they were my body trying to tell me "something's wrong here!"  After the MRI, the resident had explained that Wilbur's temper tantrums were actually seizures and that the reason for the problems with my speech and issues with my right arm resulted from Wilbur putting pressure on the areas of my brain that control those areas.

I was proud of myself for not crying hysterically as I called and told my parents what was going on.  That's not a call that anyone wants to make to their loved ones, especially when you're on the other side of the country.  I called Amelia in NC and asked her to start praying because even though I was still in shock, I knew I'd need all the thoughts and prayers I could get.  I posted on Facebook:

"So I just got the news that I have a 4cm tumor on the left side of my brain that has been affecting my speech and the right side of my body. I am looking at surgery depending on what the radiologist says later this morning. Please keep me in your thoughts and prayers. — with Mercedes Hunt at University of Utah Clinical Neurosciences."

And promptly fell asleep for a couple of hours, completely exhausted from everything that had happened the day before and everything I'd found out.

I'm really sorry if I almost gave you a heart attack with the bombshell!  I've heard from a couple of people about how shocking it was to read the update first thing in the morning on your newsfeed.  I also hate that I was too exhausted to call more people and tell them myself.  Danielle called me shortly after she read the update and was like "what the hell, Lady!?!" and promptly came to the hospital after a early morning meeting on campus.  It was while Danielle, Mercedes and I were waiting on the morning neurology resident that Danielle christened the tumor "Wilbur."

With Amelia and Danielle during Amelia's first visit to Utah

 I know Wes probably got one of the biggest shocks of his life when someone called the house to ask how I was and when I was getting out of the hospital when he didn't even know I was in the hospital.  He hadn't seen Mom and Dad that morning, so he texted me after the call trying to figure out what was going on.

When I finally got home that afternoon, I fell asleep on the couch in the middle of a movie.  Joseph had come over to hang out, eat Thai and watch a movie and I completely passed out on him.  But I think that most people understand what a great shock this kind of news comes as.

You have a mass...in your brain

Do you ever have moments in your life that seem surreal?  Like "this isn't really happening right now, is it?" And even when you play the scene back over and over again in your head, it still doesn't make sense.  That's the point I was at shortly after midnight on Monday, August 26, 2013.

As part of those tests they had to give me before they could say I was having "migraines", I had to have a CT scan.  They told me it would only take a few minutes and Mercedes got to go back with the tech and watch the action.  One of the ER volunteers, a nice guy who was getting in volunteer hours before applying to med school (I believe) wheeled me down the hall to the CT Scan.  Apparently, it had been a crazy night in the ER because they had ran out of rooms to put people in and there were beds set up along the halls as we went.

I don't remember how long we had to wait for the results, maybe 30 minutes.  But I do remember that the resident came in sat down on the stool in the room, looked me in the eye and said point-blank "I'm sorry to have to tell you this but you have a mass in your brain."

I think my jaw dropped, I probably looked like a gulping fish.  I looked at Mercedes and we share a "what in the world" look before I turned to the resident and asked "is this some kind of a joke?"  I truly thought it could have been a joke.  Like I said, the nurses and EMT's all had great senses of humor, I would have expected one of them to say "you have a mass in your brain...no, really you're just having migraines."  But I don't think the resident had much experience delivering the kind of news he was giving me.  And really how does one go about preparing yourself to deliver that kind of news?

So even though I was in shock and felt like the whole thing was surreal, they quickly prepped me to go get and MRI so they could look at the soft tissue and understand a little better what they were dealing with.

"We think you're having migraines..."

Mercedes and I arrived at the ER at the University of Utah Hospital around 7 p.m. that Sunday.  I had worked myself up (again thinking I was having mini-strokes) to the point I could barely talk for crying.  They did some quick tests to see if I was having a stroke, I obviously passed because it turns out I wasn't having a stroke, go figure!

With Mercedes and Skipper in September 2012 for ESTC12 in Monterey, CA

Mike, the EMT/waiter at one of my favorite SLC restaurants Eggs in the City, escorted us to a room to wait until I could see one of the ER doctors.  It seemed like there were a slew of people coming and going and it was hard for me to keep track of everyone.  I do remember that most of the nurses and the EMT's seemed to have great senses of humor and kept Mercedes and me entertained while we waited.  Both the attending and the resident who checked on me and gave me "stroke tests" (I don't know what else to call them) thought that I was having migraines but told me they needed to conduct tests before they could say for sure.

I don't know about the rest of you, but I hate having my blood pressure measured, tested, whatever you call it!  Well, they hooked me up to this cuff that was set to check my blood pressure periodically.  The nurse, Hailey, came and checked it.  Five minutes later it started again!  I think this is a serious flaw with the system.  If you have it set to 30 minute increments, then logically, shouldn't the machine realize when you take a measure and then start counting the 30 minute increment?????  You would think so!!  Sorry, I digress...

So I'm hooked up to this machine, Hailey checks my blood pressure, the machine checks it 5 minutes after that, and THEN 15 minutes later the machine starts checking it again.  Three blood pressure checks in less than 30 minutes!! Does that seem ridiculous to anyone else?? Anyone in the medical profession, can you explain the rationale behind this to me?!?  The reason I'm making such a big deal about this is because the **Bleepin'** blood pressure cuff and my ensuing panic set off Wilbur for the sixth time that day!

I'm in tears when this thing starts up again, I press the nurse call button and by the time the nurse answers, I'm in the middle of an episode and can't form the words to tell her what's going on!  All I can manage is "Blah" as me trying to say blood pressure cuff.  Mercedes can't think of what to call it either because she's concerned about my panic, so she just steps outside to tell the nurse to get in the room.  Once they get the stupid thing off of me, the resident comes in to administer the stroke tests again.  While he's using his iPhone to give me speech tests, Mercedes and I are still in a panic and I can tell that once again my speech is really off!  It took an hour after the last episode of the day for my speech to return to normal.

When I got worried...

So fast forward two years...

I'm finishing up my masters thesis, I just started a job with The International Ecotourism Society, and I'm preparing to travel to Kenya for ESTC13 at the end of September.  I go in for my shots on Aug. 12 and then start my typhoid vaccine pills on Aug. 14.  Everything appears to be going well, I don't appear to have any of the negative reactions to the vaccines that several of my coworkers experienced.  Part of me wonders if the vaccines startled Wilbur.  I will probably never know what actually set Wilbur off that day, but on Sunday, August 25, 2013, Wilbur made his presence known.

I woke up and had two "episodes" (as I referred to Wilbur's temper tantrums before I found out about him) before 10 a.m.  I'd developed a headache and took a couple of Tylenol to help with the pain.  My headaches have never been something that I complain a lot about.  I recognize that compared to close friends of mine who suffer from migraines that a minor discomfort that typically goes away after a couple of over-the-counter pain pills is nothing to get concerned with.  So I didn't think anything of it until I made lunch that afternoon.  I had another episode and then went to fix myself a sandwich.  Again, thinking nothing of it until I realized I really had to concentrate on holding the knife and moving the my right arm.  I could speak but even to my ears I sounded off.  I had trouble thinking of words for things, I tried to name each of the items on my counter with limited success and what I could say sounded slurred.  That's when I panicked.

I called Catharine because she knew about the episodes and then I called Mercedes because I knew she would calm me down and help me figure out what to do next and she lives close by.  When she came over to my place a little later, I explained my symptoms and why I was so worried about trying to figure out what to do.  You see, I no longer qualified for student health insurance and as an independent contractor, I didn't qualify for health insurance through my job.  Since I'm usually very healthy and only have to deal with allergies when the seasons change, I should have been fine.  I had convinced myself that I could wait until Monday and go to the Student Health Center for help, that nothing was happening that meant I needed to go to the hospital (even though I had also convinced myself that I was having mini-stroke like symptoms; lesson learned :: stay away from WebMD and self-diagnosis).

I had episodes four and five for the day in Mercedes presence.  After number four, (which was Mercedes first time witnessing an episode) Mercedes declared, "that's it, we're going to the hospital right now!"  I had episode five after I'd been convinced I needed to go to the hospital but before we could actually get going.

When I first met Wilbur...

I met Wilbur in the Fall of 2011, though he may have been with me for years before.  I was in my second year of graduate school at the University of Utah studying Parks, Recreation and Tourism.  I don't remember the date or time of our meeting, just that I thought it was very strange.  I didn't even tell anyone about Wilbur until I went home to NC at Christmas.  Describing what happens to me when Wilbur takes control is hard.  It usually happens suddenly without warning, I feel almost like I'm playing "Freeze."  My right arm is stuck in whatever position it was in when Wilbur takes over and I can't speak, can't even think of any words in English.  Typically, Wilbur is only in control for a couple of minutes before he lets me go and then I'm fine and can go on about my day.

With Catharine in 2012.

I went to visit Catharine for a few days that Christmas; I usually tried to go to Raleigh whenever I was in NC to visit Catharine and Linda.  I remember sitting in Caribou Coffee with Catharine when Wilbur took over.  We'd both been reading something, so I had to get her attention when I realized what was going on.  I rapidly tapped the table in front of me with my left hand to get her attention.  I'm sure I had a deer in headlights look on my face because suddenly losing the ability to speak is so weird!!  She watched me until Wilbur let me go, I don't remember what was said.  I just remember feeling relieved that someone knew and that it wasn't something I had imagined.