Pre Surgery Whirl Wind

Wow, what a whirl wind the past two days have been!  Yesterday I left for Boise and spent the day traveling.  22 hours after waking up Monday morning, I was finally getting ready to go to bed...it was a VERY long day!  My first flight went really well, although I did learn that peanut butter is considered a liquid, and they confiscated by brand new, unopened jar of almond butter at security.  Once I was in Chicago, I had enough time to grab some food and relax before boarding my flight to Boise.  We boarded and I struck up a great conversation with the lady next to me.  About 30 minutes later, we were informed because of the snow, 2 of the tires were outside of acceptable limits and needed to be changed.  After a lot of confusion as to what was going to be the solution, we had to gather our belongings and trek to the other side of the airport (not the concourse, the whole airport!).  The flight got in about 2 hours late, but luckily I continued to have a great conversation with Ann, the lady who was sitting next to me, and that really helped make the journey easier.  In fact, we exchanged phone numbers, and will hopefully get together again before I leave Boise.

After my luggage finally came - my bag was the very last bag out - I finally got to meet Heidi.  That was a very memorable moment.  It is very cool to know someone for over a year, and then finally meet them in person, especially when things feel so natural it's like you've know each other in person all along.  To my surprise, her daughter Rosalee was with her, which was awesome!  She's a cutie and VERY easy going.  For those of you who don't know, Rosalee also has Microtia and Atresia, and that is how I know Heidi.

Once I got my luggage in my room at the Bishop Foote House, we ran to the grocery store.  Heidi left around midnight, and then I had to unpack the kitchen and my luggage.  It's probably good I still had to unpack, because I was very euphoric at this point and needed some time to calm down.  The flights weren't perfect, but the company made everything better.  And although I was pretty sure Heidi and I would hit it off in person, when you're relationship with someone is purely over the internet, it's always possible in real life it will be weird, or just not work.  Honestly, it was even better than what I imagined as best case scenario.

Once in bed, I began thinking more about how funny it is that I have so many 'friends' via facebook support groups that I have never actually met in person.  Many aren't even on the same continent as I am.  I know most people find that meeting those kinds of 'friends' in real life is awkward and takes a while to make into a face to fact relationship, my experiences meeting people in my BAHA and Mictrotia/Atresia support groups has never fit that mold.  Whether I meet with a parent of a child with M/A or an individual with M/A in real life after talking online in the groups, it's always the same.  It's a deeper kind of understanding and compatibility than anything you can develop in person.  You have something in common that is part of who you/they were born as.  It's a deep kind of innate understanding of what the other's life is like in some aspects, without ever needing any words.  It is a very cool experience, and I'm very thankful to get those opportunities.  It's very exhilarating and healing.

So today was pre-op day.  I spent the morning continuing to unpack and making a smaller grocery store run (by foot this time).  It was very easy to get my bearings and find my way around after a little time with my phone's navigation.  Then, I met with Dr. Griffiths.  I also got to meet Star Thomas, who is the wonderful person in his office who's been working with me to get everything in place for this trip.  She continues to surprise me!  She informed me that she had asked her daughter if I could come use her sewing machine while I'm in town in case I want to do any sewing!  It warmed my heart, but I am really looking forwards to enjoying some of my other hobbies while I'm away from my machine, so I probably won't be taking her up on the offer, but the gesture was really above and beyond.

Dr. Griffiths answered all my questions and I never felt rushed or like I didn't have enough time to find out what I wanted.  Then, he drew lines on the side of my face to mark a large artery and other indications for tomorrow.  He took lots of pictures, made a mold of my good ear, and made a trace of my good ear.  Then he gave me a tour of the OR and the floor I'd most likely stay on afterwards.  We also inquired with the floor on what the best way to make sure I get food that I can have on my low FODMAP diet.

I think I know which method of surgery I will have, but I will keep you all in suspense until after ;)  I will write more on the surgery and how he does things at that point too.  But for now...it's getting late and I have to be at the hospital by 5:30 am tomorrow...luckily it's about a 5 minute walk from here (there's also an on-demand shuttle if at some point I need it).

Overall, things have surpassed my expectations.  That includes the people, my accomodations, as well as my mood.  I'm am no where near as nervous as I thought I would be.  However, staying that way is very hard work.  I may not "feel" nervous, but let me assure you I am using a lot of the coping skills I have learned in the past 4 years to keep it that way.  Those skills are also allowing me to not get caught up in anticipation of the surgery and the results - instead I'm doing my best to drink in every moment of this journey.  I know this is not a one day operation, but a journey that will take a while to recover from - and to adjust to.

Bedtime!  See you all on the flip side!

I also have pictures to post...just ran out of time...stay tuned!

Worn Out!

So the stress is taking it's toll.  I mean, yes I knew I was stressed.  I've been running around like crazy getting ready, and I have had a huge number of large canker sores in my mouth, which are both signs of stress for me.  Add to that the fact that I've been dealing with my fear by making sure I have everything in place (to me, there is a very subtle difference between stress and fear).  I've been pushing myself to get everything ready before I leave, knowing that as soon as I get to the airport Monday I can start relaxing and stop most of the fury.

I didn't make it.  Last night around 7 pm I crashed.  Completely crashed.  I tried to push myself to a place where I could get something productive done until bedtime, but to no avail.  I gave up and gave in around 8:15 pm and went to bed.  I slept until 10:30 this morning.  I was really looking forward to going to church this morning, but obviously I missed it.  Apparently I was worn out.  Consequently, I now have a TON of quilting to do today (around 7 hours, and it's almost Noon already).  But I'm glad I let myself sleep because the last thing I needed was to push so hard that I wound up sick right before my surgery date!

I'm still really sleepy - both physically and mentally - from everything I've been doing, but less so than last night.  It's time now for the final push before I leave.  Just thought I'd pop in and give a quick update about the effect of all of this preparation on my mind and body.

Fear

"Fear is akin to dreaming one's life away."

~Yann Martel, from The Life of Pi

In my senior year of high school I read the novel The Life of Pi by Yann Martel, right as it was starting to make its way onto top book lists.  I dog eared many pages of quotes and compiled a word document with all of them.  I then printed them and framed them to hang around my dorm room in college.  There were so many good things to remember from that book!  Unfortunately, in the process of changing computers several times, I've misplaced this document and have had a hard time finding all of my favorites on quote sites around the web.  However, I did manage to recall this one tonight as I sat down to type out how I'm feeling about my upcoming departure for Boise and what lies ahead - not just the day of surgery and the few weeks after while I get the initial healing under way, but for the next year of recovery (it takes about a year for the swelling to completely go away).

When this quote popped into my head as I was thinking about where to begin tonight, it occurred to me that this embodies what I want to say perfectly.  I am scared.  I am flying across the country by myself to have surgery.  This will be the most major surgery I ever have after the initial 2 night stay at the hospital, I will be recovering while trying to cook, do laundry, and basically take complete care of myself - I also will have no car, so if I need to run to the store, I will take the bus (which is fine) and carry whatever I purchase back to where I'm staying.  Just in case, I'm probably going to make about 4 trips total to 2 different grocery stores (Winco and Whole Foods...Winco is cheaper, but I am on a very restricted diet - no gluten, no dairy, no soy, just to name the big ones - and certain things just can't be bought at a regular grocery store).  I plan on buying enough food to make meals to feed me for most of my stay, if not all of it.  I will chop and freeze what I won't use in the first week, that way just in case I'm really laid up, all I have to do is dump stuff into a pan and fry.  I hope that I won't be that bad, but because I will essentially be on my own without many resources besides medical staff (I do have one friend in the area, thankfully), I want to make sure I will be okay.  Overall, I'm doing my best to plan for the worst case scenario, while hoping and imagining the best case scenario.

I'm also scared about the surgery itself, mainly because I'm worried something will go wrong and I'll lose the ear or get a bad infection and be in a lot of pain for a long time after the surgery.  I have had so many things go wrong this year medically, but I'm trying to focus on the positive (plus, at some point SOMETHING has to go right, no?).

So back to the quote.  Fear.  I am scared.  In fact, when I went to the doctor this afternoon and they took my pulse, the nurse left it on my finger beeping out loud while going over my medications with me and filling out my information in my chart.  At one point I began thinking about the trip and the surgery and I heard the beeping speed up because of how anxious those thoughts made me.  However, I've learned how to control my emotions over the past four years, so I took some deep breaths and changed my focus and I heard my heart rate drop back down.  I found this pretty amusing, and the nurse was still doing the paperwork, so I had some fun.  I thought about the surgery again, and the beeping quickened again.  Then, I relaxed myself again.  At this point the nurse kind of looked over at the unit kind of funny, so I figured I better stop lest she decides somethings wrong with my heart...

The point is, fear can - and will - take over your being if you let it.  If I "gave in" to my fear and stewed in it, I would be a nervous wreck.  The thing is, I know this.  When I feel the fear creeping up into my heart and throat, I am aware of those sensations.  Now, years ago, I probably would have shoved them down and eventually exploded.  But because of my extensive DBT training over the past four years, I know a healthier way.  I acknowledge the fear.  I even go as far as to validate it's existence...I say "hi", and "yes, there's that feeling again", and "gosh, I can see why I would feel this way".  But here's the turning point.  I don't engage the fear.  I don't ruminate in it and go to all the "what if" scenarios it creates in my head.  Instead, I change the subject to something else.  Sometimes I can do this subtly, like by focusing on what I need to do between then and when I leave to ease the fear, but other times I need to focus on some good music, or surf the internet.  "Do what works" in the moment.  Oh, and of course, breathe!  I know what it feels like to relax completely in a meditative or hypnotic state.  And, when I take my breath, I recreate that feeling each time I breathe out until it settles me.

When you are engaged in fear, there's no room to live.  Your body goes into fight or flight mode and focuses only on the basics of survival.  There's no room for joy, fun, or living in the present.  Fear robs you of that.  So, I use my skills to bypass the fear and live my life.  I like to say for this case that instead of thinking about how scared I am, I'm using that fear to motivate me to plan and get everything in place in case something goes wrong.  I'm channeling the adrenaline it creates in order to get done what needs to get done before I leave in 3 days...and there's still a TON to do!

And of course, I keep it all in perspective.  The absolute worst thing that could happen is I die, and the chances of that happening are pretty much zilch as long as I watch for any signs of infection, and if I notice any, call the surgeon.  Yes, I could lose the ear to infection and be left with no ear at all.  But I have to remember that the chance is again very low.  Plus, cosmetically, no one really notices my little ear, so most likely they wouldn't notice that either.  And, overall, being left without an ear, is nothing compared to being without any other body part.  I want an ear.  But, if something goes wrong, I can pretty much lead as normal of a life without one as I can with one.

So, I am just doing my best not to rush things.  I don't want to get so caught up in the outcome that I miss the experience leading up to the outcome.  I want to feel everyday and notice what I am doing instead of focusing on the fear and "what ifs" all day and missing the wonderful life I'm already living.  That's another reason I want to write this blog.  I can get out what keeps me 'dreaming my life away', without letting it dominate my life all day, while also being 'forced' to reflect on my emotions and activities surrounding this change in my life - before, during, and after.

This is a journey.  It is not an overnight fix.  A very wise lady reminded me of that today.  She told me to give it time as the surgery was just the beginning of the journey and that it would most likely take me about a year to adjust.  That made me think.  I intellectually knew having this surgery would change things, but before that remark I hadn't really stopped to think about what and how things would change.  While at this point I can only guess, I am doing my best to stay open and accepting of any changes this process brings about - both physically and emotionally.  I am looking forwards to how this process enriches the journey I'm already on.  After all, it all boils down to embracing life's journey in the end.

Countdown:

• Leave home for flight in about 85 hours (I leave around noon Monday).
• Surgery in 6 days.
• 1 week from today, I will have been in the hospital recovering from surgery for over 24 hours.

Photo Shoots are Awesome!

Even though I want to get an ear, I have had this nub for the past 25 years, and it makes me anxious to know I will never see it again.  So, I decided I should have some really nice photos taken to remind me of what it looks like now.  I spent time trying to figure out how to afford professional photos, especially since I didn't need a long studio session or outfit changes, but I wanted a step up from going to Walmart or the like.  I found a local photographer who was willing to work with me.  It was a wonderful experience, and I highly recommend it to anyone considering any surgery that will alter their appearance, or anyone with any self-appearance issues.  Getting pretty and having someone dote over my malformed ear made me feel better about myself.  No really.  It made it less of an oddity, and made me feel more like it was something special about me.  A good photographer helps that happen too...

Does the experience make me change my mind about having the surgery?  No, because once again, the main reason for me to have the surgery is not appearance driven.

Below are some of my favorite pictures from the shoot.  I put a warning before the last 3 pictures as they are extreme close ups of my BAHA post.  It shouldn't been an issue, but if that's something you don't want to see, I wanted to respect that.  Unless you click on "read more", these 3 photos should  not be visible to you.

Photos by Ken Love 

(He's awesome to work with!)  Visit his site here: http://kenlovephotography.com/

WARNING:  The last 3 pictures are super close-ups of the titanium post that my BAHA attaches to.  It is fully healed meaning no blood, raw, red, etc.  However, if you think seeing a metal post sticking out of the skin might be disturbing, please click on "read more" with caution.  Keep in mind that many piercing look much worse than this!

How This All Came About

Note:  If you want a little bit of information of my history with Microtia and Atresia and how it affected me growing up, or you would like to hear about how I decided to pursue gaining hearing on that side, please refer to the story I wrote for Ear Community (click here).  If you haven't read this or heard me talk about it, I encourage you to read it before delving into this post as I am, at this point, going to assume that you all know that bit of background...just so we're all on the same page!



Who:  Me!  My surgery is being performed by Dr. Russell Griffiths in Boise, ID.


What: Reconstructive Ear Surgery for Microtia of the right ear.  I am NOT having an ear canal built (the atresia bit of things).  When I first decided I needed to look into hearing on my right side, I only knew of one way to do it: 9 surgeries to open the canal, as per the doctors when I was young.  When I started researching my options, I knew that the techniques would probably be better than back then, but I didn't know how much.  When I started reading about Canalplasty (creating the canal), I started to think it was a bad idea.  Here's why:

                 1) Not everyone is a candidate.  Some people's inner bones aren't developed enough, etc.                  and many people's facial nerve is in the way, to put it very simply.

                 2) It doesn't guarantee any level of hearing gain once opened.  And, the hearing usually                        fades faster than hearing loss of a normal ear.

                 3) There is upkeep.  The canal has to be cleaned out by a doctor every 6-12 months.  That                  is an inconvenience, but really, I just don't know what my health coverage might be like for                    the rest of my life, and I don't need that over my head.

                 4) The canal can close up and/or narrow over time.  I've read about this happening to                          many people.

I can see why Canalplasy might seem like a good option for some, but for me, my age, and where I'm at in my life, I'm more concerned about hearing than having a canal.  At the time, I also thought I was more about function than looks.  I read about the BAHS's and went that route. (I will address how creating an outer ear came about in a bit.)

If you spend some time exploring Ear Community's website or  Dr. Griffiths' website, you will know there are two methods of creating an outer ear.  Medpor or Rib Graft.  I will let you read up on those if you need to.  I am still unsure of which method I will go with (Dr. Griffiths' doesn't require me to decide until the day before), but I'm pretty sure I will choose Medpor.  For me, I can have Medpor and have much less pain but possibly less of a match to my existing ear and an increased risk of infection from rejection of the Medpor right after surgery, or I can have Rib Graft and potentially have a better match to the ear I have and less risk of infection following surgery, but more pain.  At this point in my life, I am not too worried about exposing the framework/infections after the ear is healed.  Again, as I will explain later, I'm not sure I care enough about whether the ear is a direct match to my other one, I'm more concerned about having AN ear, not that it's an exact duplicate.  However, I also know that I only get one go at this, and I might as well do it exactly how I want.

Where:  The surgery will be at St. Luke's Hospital in Boise, ID.  I will be staying across the street at the Bishop Foote House.  Dr. Griffiths' office is about a block away as well.  After the surgery, I will spend 2 nights at the hospital, and then return to the Bishop Foote House for the remainder of my stay.


When:  I fly to Boise Monday, November 25th.  I have pre-op Tuesday, and surgery all day on Wednesday.  I should be out of the hospital on Black Friday.  In order to monitor healing and 'settling' of the ear on my head, I will stay in Boise until around December 19th.


Why:  And this, I think, is the burning question on everyone's mind! I've never been teased, even with my short hair no one even notices, I'm an adult, I can already hear on that side, why in the world would I want this done?!  Especially when I said I didn't care about looks, but just being able to hear, when I went with the BAHA back in 2011! Things change.  Since that time, I'm more aware of my options and what they entail.  I have met SO many supportive people online and in person dealing with Microtia/Atresia and/or BAHS's over the past couple years.  I feel very blessed to have the opportunity to learn from them and share my experiences to help them as well.

About 8 months after I got my BAHA 'turned on', as we call it, I started noticing something funny.  Now that I could hear on my deaf side, there was less of the thing we call a 'head shadow'.  Interestingly, however, this made me start to notice my lace of external ear.  Basically, I feel like I'm missing a body part, which, prior to having a BAHA, I never noticed.  I'm not sure if it's completely related to the fact that I can hear over there, or if part of it is just that I'm much more aware of my lack of ear/condition than I was before, but in any event, it's there.

I wanted to look into surgery before I lost coverage under my Mom's insurance (January 2014), because I figured anything I got wouldn't be as good.  I met Dr. Griffiths in late summer 2013, and decided to look into it to see what I could find out.  I worked with his office and surprisingly, my insurance covered the procedure!  Because of my benefits, my deductible, etc., the cost was very minimal to me.  They also have affordable lodging at the Bishop Foote House, so the length of stay wouldn't kill me either.  I planned surgery for this time of year, but due to other health problems, ended up cancelling the surgery in August 2013, with no plan to be able to reschedule before losing my insurance coverage.  However, by some miracle, three weeks ago, in the matter of 7 days, his office and I figured out a way to make it happen.  I feel so blessed to be given this opportunity, especially since I know if I don't do it now, I will most likely never be able to afford it again.

I have continued to research the surgery and my choice in surgeon and in the last few weeks have been feeling more and more comfortable with my decision.  I am really not doing this for the looks (although that is an added bonus!), but instead I am doing this because I notice the lack of ear and feel kind of 'empty' on that side of my head.  It's more of a feeling than a sight thing.  And, the coolest thing is that the new ear with have some feeling in it!  Through all of my research over the last year, I somehow didn't stumble across that tidbit until about two weeks ago!


So, now you know a little about how this all came about.  It's a long complicated story, and I'm doing my best to keep it short without confusing anyone, or getting a lot of questions for clarification.  If you do have any questions, etc, please leave me a comment of email me at Katie@katiesews4u.com.