Wednesday, April 25, 2012

The Approaching Activation

So my activation is tomorrow.  Wow.

It was not supposed to happen so soon, but I figured it wouldn't hurt to inquire about an early activation.  My assertiveness paid off.

Let me back up and discuss the post-operation period a bit.  When I went for my follow up appointment yesterday, I questioned if I was healing as expected.  I was caught off guard by an uncomfortable period in my recovery, and I was baffled that my discomfort was growing worse instead of better.

Several days following my operation,  my cochlear implant optimism really started to wane.   Up until that point, I had made it through the annoying and difficult-to-eat phases of Days 1 and 2.  I was fatigued, certainly, but I gave myself permission to ignore the housework and sleep as needed in my very comfortable bed.  Jeff had also voluntarily moved himself to the couch for a few days; though deaf on the right side, my left ear-sadly- can not escape Jeff snoring.   In a way, my recovery was becoming a mini-vacation, with tropical daquiris and views of the beach being replaced by Tylenol with codeine tablets and Bravo reality shows.  This whole surgery thing wasn’t so bad!

Jeff's reaction when I sent him the picture of Pammy Pumpkinhead?
But then Day 3 hit.  The right side of my head had remained pretty numb up until this point, but as sensation started to return, I grew more uncomfortable.  Not only that, but the right side of my head started to expand.  It started to feel like my head wasn’t stretchy enough to hold all the puffiness, and it resulted in this throbbing pressure, and an outward appearance of what I like to call “Pammy Pumpkinhead.” Though I was starting to feel pain, I didn’t have many pain pills left.  The mini-vacation wasn't such a fun time anymore.

It was around this time that my mom-guilt also started to kick in.  Claire's 5th birthday fell on Day 5 of post-op, and I had promised her I would make cupcakes (even though others had offered to bake on my behalf.  I realize I'm still struggling with letting others help me).  One of my character strengths is that when I commit to a project, I like to develop something unique and very special-- especially when it comes to my kids and their birthdays.   As a result, I've created some great memories for my family.  At the same time, I've also collected a lot of stress and tension; my projects are never as simple as I imagine them to be!  By the third damn cupcake, I was tired and messy and wondering why I didn't just pay someone to make professionally decorated baked goods.  (Someone remind me of this next time I start to bake anything that involves decorating, please).  

Cupcakes created during my recovery.  It was my baby's 5th birthday, after all!
On Day 4, the kids, Jeff, and I left the house to obtain my supplies for Project Cupcake.  I was sick of being in the house and ready to experience life outside of my bedroom.  The trip was my first adventure with my silent right ear.  In addition to being a bit uncomfortable, I was also off balance.  Driving in the car felt like I was on a roller coaster, and my depth perception was also impacted.  While shopping, I felt like I was about to fall over my children walking ahead of me.  With only one ear to guide me, loud stores were just a cacophony of noisy sounds.  I realized how difficult it was to really understand the world around me with just the left ear.

By the time our trip was complete and I had spent two hours baking and decorating cupcakes, I was DONE. The pressure in my right ear was pretty bothersome.  Over the night and into the next day, the pressure intensified and my balance continued to be affected.  By the time the post-op appointment came around, I was dizzy and nauseated, and frightened to drive.  Jeff accompanied me to the appointment and the surgeon was quick to identify that I had more swelling than usual.   He thought it was a result of a blood clot behind the incision, which was causing all the pressure.  I went through a series of x-rays to confirm.  After, the surgeon informed Jeff and me that the clot had not impacted the healing, and he thought I could be activated early next week.

Initially, I pictured scheduling the appointment for Monday, the earliest possible day in the work week.  But as I thought about it further, I asked myself, "What is the big difference- really- between activation on Monday and the Friday before?"  

I asked the receptionist about the possibility of a Friday activation and learned the audiologist, Dr. Susan, would not be in her office that day.  But after considering the Friday possibility, I was fired up and decided I wanted activation as soon as possible.  Two celebrations are occurring this weekend- a party for my daughter, and my son's first communion- and I just want to hear something.

"How about Thursday?" I asked.

The receptionist went on and on about how she wasn't sure if she was supposed to schedule anyone on that day and she would have to talk to the audiologist and call me. I provided contact information and in the mean time, I remembered I had a secret weapon: my audiologist's email address.

On the way home, I wrote an email to Dr. Susan and told her about the upcoming weekend's events.  

I received this response: "How about 1:00 on Thursday?   You do understand that you may not hear at the activation.   You will hear sounds, but may not understand speech, which can take months.    I don't want you to have these high expectations that you will hear this communion service..."

I took the appointment.  Though I've been reminded, once again, to keep my expectations in check, I'm really not going into the activation thinking that the audiologist will hit a button and BOOM!  Pam can hear!  I know I am going to have a lot of work and rehabilitation ahead of me. I anticipate certain sounds will be unidentifiable and bizarre at first.  Instead of high expectations, truly, I have no idea what I'm about to experience.  Though I have watched plenty of you tube videos, and though others have shared their activation experiences with me, I am not prepared for tomorrow.   I don't know how I could be.  Of course, I'm extremely curious to start my new life with the cochlear implant.

I'm struggling to find an appropriate ending to this post, so I leave you with this image of a happy little Pam who loved to dance, and who I believe at the time, could hear pretty normally.  I wonder what sounds I'll hear again that will remind me of this time period?  I'll start to find out tomorrow. 

Friday, April 20, 2012

Surgery Day

Jeff and I post-surgery with my new friend, "Jock Strap"
When I woke up in the recovery room, my first thought was: "It's over?" 

I touched the top of my head and was surprised- and pleased-  to not be wrapped up in bandages, turban-style, as I anticipated.  (After consulting with other recipients, I feel quite blessed that I received the prestigious velcro bandage that I affectionately nicknamed the “jock strap.”  It’s easily removable and pretty comfortable.  I got lucky.)

While touching the bandage, I immediately thought, "Can I still hear?"

I started banging the bed, clapping my hands, snapping my fingers... making any possible noise to see if my right ear got anything.  In my drug-induced state, I was certain the right ear was still hearing.  I even grabbed the male nurse next to me and told him, “Hey! I think I can still hear!”  I then looked up to God and said, "Thank you."  And lastly, I looked around and realized other patients were in the room with me, also trying to recover before heading to post-op, and being forced to listen to the young woman with a jock strap attached to her head, happily clapping and snapping. 

I also realized it was about 4:30 in the afternoon, which meant I had not seen Jeff for over three hours.  I didn't even remember saying goodbye to him, but when I woke up, I wanted to see him immediately.  The drugs made me comfortable, and I was also very loving.  I told the nurses how nice they were several times (I wasn't making it up-- they WERE nice), and I kept asking for my husband, telling the nurses I love him and that he's really sweet and handsome.  (That IS the truth, though the drugs certainly provoked me to be more candid than usual with complete strangers).  Luckily, Jeff and I were reunited before 5 PM, and he informed me per his discussion with the surgeon that everything had gone perfectly.  I was feeling great.

Although surgery day was a bit of a blur, I can recall some specific memories before heading off to the hospital.  One of those times is when I said goodbye to the kids; if you’ve been following the blog, you know I’ve pictured this scene in my mind repeatedly and that I’ve cried instantly when thinking about it.   As a mother, it was a very touching moment for me, but I didn't break down crying on Colin and Claire’s little shoulders like I pictured.

The individual goodbyes from the kids were reflective of their personalities.  Claire was first.   She wrapped her tiny arms around me and said, "I love you, Mommy, and I hope you have a very good surgery."  Then she sweetly put her mouth next to cheek and just for my right ear, she whispered, "I love you, Mommy."  She walked out the door to her ride to school, blowing me kisses and mouthing "I love you" until she got in the car.  She is the best.

Colin was next.  He hugged me too, although it was more like ME hugging HIM, and that was expected with an eight year old boy.  He mumbled he loved me, but the best part about Colin's goodbye was his honestly.

"I don't get why we are acting sad when this surgery is going to make you hear BETTER!" he said.

It was a good point, very Jeff-like, and a reminder of all the blessings to come.  Colin wasn’t worried because he realized in time, not just my life, but our lives were going to improve.  Colin's not the kind of kid who is going to whisper sugar-coated Hallmark card phrases to me (that's what Claire is for, after all), but Colin can be very wise.  His perspective cut through the anxiety I was feeling and made me remember the bigger picture.

It wasn’t soon after I said goodbye to Colin and Claire that Jeff and I were off to the hospital.  And remarkably, I was quiet, calm… I didn’t cry.    Once we arrived, things moved quickly.  After putting on the hospital gown and a bit of a wait, I remember Jeff telling me it was “show time,” though I don’t specifically recall saying goodbye to him.  I somewhat remember being wheeled into a room where it seemed as though there were nurses everywhere preparing me for surgery… one was putting massage-like things on my legs, one was putting sticky circles and wires on my chest…   I remember seeing my name on a whiteboard in that room, and I remember saying a prayer for all the people who had offered so much love and support to me over the last few weeks.

The next thing I knew, I was making a lot of noise in the recovery room and telling people how cute my husband is!  And I was so grateful… I just knew when I woke up that I made the right decision to go through with the surgery.  I just knew I was going to be okay.

Almost 48 hours later, I’m still okay.  I have experienced many of the normal side effects from the procedure.  I’ve had a hard time eating (my jaw is sore) but smoothies are one of my favorite foods anyway!  My taste buds have also changed; I was warned of a metallic taste in my mouth, and sure enough, the flavor of food is pretty dulled.  In the first 24 hours, I had very minimal pain, but as Day 2 approached, swelling increased.  In addition to looking a bit like a hobbit, my head and neck also hurt.  Thank God for pain meds, and don’t worry!  I am taking them regularly!

Also, as soon I was given the okay to take the jock strap off, I had Jeff put a headphone in my right ear and play a song without telling me what it was… and I got nothing.  So, as I was warned, I assume I am officially deaf in my right ear.  What is unexpected, however, is that I really had to perform the headphone test to know for sure.  It is amazing how much my left ear compensates (which is why I thought I was still hearing out of the right side in the post-op room).  Also remarkable is though I can’t hear sound out of my right ear, I still sense energy on that side.  It’s a strange sensation to explain but I spoke with a friend who is deaf and he understood what I meant.  I thought I would be sad to lose the hearing, but honestly, the circumstance just fascinates me!  As a blog commenter so eloquently put, my story is an example of losing first in order to gain. And I certainly feel I am gaining more than losing.  With your love and support, I've gained strength, courage, excitement, and an increasing sense of peace. Of course, I'll also be gaining a lot of sound in the right side soon.  I just need to heal a bit first.

The post-operation appointment is scheduled for April 24th and the activation appointment will be next.  In the mean time, I remain on pain meds with jock strap nearby in case I need him, and I send all of you much love and gratitude!  Thank you!

Tuesday, April 17, 2012

Great Expectations

On Thursday morning, I sat in an examination room.  I was in Albany for my pre-operation appointment, the final time seeing my doctor before the cochlear implant surgery.  While waiting, I looked at a faded piece of paper on the wall that had been framed.  The document was titled “The Top Ten Things I Can Hear.”  In a child’s handwriting, the list included astonishing items (to me, anyway) like “my neighbor talking to me from across the street” to phrases that made me laugh such as “my sister’s loud chewing.”  I felt grateful.   I was even daydreaming career options for myself in audiology, picturing myself helping a child like the creator of the document on the wall.  I was at peace.

And then the surgeon came in.  This was not our first meeting, so I should not have been surprised by the doctor’s lack of bedside manner.  He is known for being a reputable surgeon, after all; I don’t know what possessed me to think that a warm-and-fuzzy, social worker-version of him would be entering the room.  But I did.

I think he said hello, but within seconds, he was dryly reciting a checklist of surgical risks, and I was not at all prepared.  His lack of emotion left me rather unemotional.  I’m not used to feeling an absence of connection with a person I am talking to, let alone, the person who will be drilling a hole in my head in less than a week.  I wondered, did he understand my responsibilities as a wife and mother and my ambitions as a professional?  Was he seeing ME?  Didn’t he want to get to know ME?

In the next fifteen minutes, additional information was presented that caught me off guard.  The surgeon and I had a brief discussion of  disturbing (though very rare) side effects such as FACIAL PARALYSIS (SCARY), but mostly, we discussed the natural deafness that would fill my right ear.

“Now, you’re prepared,” he began, “to have no hearing left on your right side.”

I responded, “Well, I thought there was a chance some of my natural hearing would remain… I’ve heard it can happen.”

The emotionless expression remained on the surgeon’s face and he told me that while some recipients report having residual hearing, I should not expect to keep mine.  Funny how I panicked over the extremely rare threat of facial paralysis and yet I had been so assured that I would defy the odds regarding residual hearing.  I realized that my thinking up to that point had been jaded by these expectations that my surgery would somehow be exceptional—that I would wake up with my 20% natural hearing untouched, though every other recipient I’ve met had lost most or all of theirs.  I hadn’t truly believed that my right ear’s hearing would go away, never to return, until that moment.

Before the surgeon and I parted, I asked him if I would be seeing the audiologist.  He told me it wasn’t necessary during the pre-op unless I needed to talk to her for a specific reason.  It was then I realized that another expectation for my surgery was not going to happen.

It hit me like a ton of bricks.  The pre-op appointment is with the surgeon, discussing the incision, the pain medication… basically all that the surgery involves.  Why did I think the post-op would be any different? 
On the way out, I asked the nurse the question I already knew the answer to.
“So when I come to the post-op appointment, I won’t be getting activated that day?”

“Oh no,” she laughed.  “You have to heal first!  You won’t be getting activated until maybe, three weeks after the surgery.  But don’t worry—you’ll be hearing by summer!”

In a period of thirty minutes, I  truly realized I would  be deaf on one side, and also that the weeks following the surgery would be much different than I initially anticipated. Driving out of the parking lot, my mind was racing.  I had been prepared for 6 days un-activated, but three whole weeks or more?  How would I get through my daughter’s birthday  party?  I was so looking forward to hearing in church during my son’s first communion, and now I wouldn’t hear anything!  How would I tutor?  Baseball games, dance lessons… how was I going to do this?

It is thirteen highway exits from Albany to my husband’s office building, and I called him to see if he could meet me in the parking lot.  When the passenger door of my car opened and I looked in his eyes, I knew he understood why I unexpectedly drove there at 11 AM.  I was scared.  So much, that I wasn’t thinking clearly and even began doubting my decision.

 "What if he hits a nerve," I wailed, mascara running down my cheeks, "And I have facial paralysis... you promise you'll love me even if I have a droopy face?"

 "That's not going to happen, but if it did Pam, yes, I'll still love you."

We went on this way for awhile, me providing a terrible what-if scenario and then Jeff responding that it wasn’t going to happen.  My stress was all the more escalated because of my disappointment regarding post-surgery, and my emotions were running wild.  The tears had grown out of control, and any rational thinking was now replaced with uber-dramatic dialogue.

“I just wish I had more time to connect with the doctor,” I cried to Jeff.  “I should have reached for his hand.  I just wanted him to cradle me and tell me I would be okay.”  (Yes, I actually said this.)

It was that moment that Jeff looked me straight in the eye and said, “I don’t want you to take this the wrong way.   But you’re NOT THAT SPECIAL.”

Well, that shut me up.  I hope I’m not presenting Jeff in a negative light, because the tough love he gave me was EXACTLY what I needed to hear, and I remain grateful for the reality check.  In so many areas of my life, I dream up these exceptional, romanticized scenarios that in no way would be realistic unless my life was a movie or Broadway musical production.  Because of these overblown expectations- with my family, with my career, with myself- I constantly set myself up for disappointment.  And I was doing it again, creating ridiculous expectations for the surgeon to shield me from all that is bad in the world.  Jeff’s words made me realize I was dealing with a surgeon, not Superman, not my best friend, not a counselor.  He was a surgeon, and he was doing his job. 

Thursday, April 12, 2012

Claire's Commentary

This morning I had my pre-operation appointment, the final appointment before the surgery.  Once again, the reality that this is really happening is setting in.  After going through all the possible worst-case scenarios with the surgeon, my excitement is GONE. Here I sit after sharing my story, receiving so much encouragement, and yet I can't believe I am asking myself, "Am I making the right choice?"  Other recipients have assured me of the emotional roller coaster that accompanies this process, and I certainly hope this is the most frightening part of the ride. 

I spent some time this evening re-reading the notes that were sent to me when I initially posted the blog.  Many included comments regarding my courage.   Tonight, I depended on those notes because I feel anything but brave.  I've also been watching a video of my four year old daughter, Claire.  I recorded it last week, when she came in my bedroom unable to sleep, and we discussed my upcoming surgery.  We then fell asleep watching her new favorite show on the Food Network: Diners, Drive Ins, and Dives (there is no relevance to including this other than I find it funny).    Anyway, like all of the encouraging notes, this video of my daughter quiets my doubts and rebuilds my courage each time I watch.  I hope you like it too.

Monday, April 9, 2012

Fears, tears and a final song

A very fast week has passed since my first post, and at this point, my surgery is nine days away.  NINE DAYS.  The initial high I experienced after sharing my story  is quickly transitioning into a feeling of sheer terror.  This is really happening. 

I am currently dealing with a mixture of bittersweet emotions.   One moment, I picture myself going on vacation in June, hearing the whole sound of the ocean with my family, and feeling a sense of joy and gratitude I didn't know existed.  Another thrilling idea is that I won't have to turn my head to look at people... how amazing to cook dinner, and not have to stop chopping in order to look and understand what my child is asking me!  Thoughts like these make me want to drop everything to get the surgery RIGHT NOW.

Then there are other situations I visualize that leave me incredibly anxious and worried.  One of the scenarios I keep running through my mind is when I first wake up from the surgery.  I'm preparing myself to hear silence, as there is a good chance I will officially be deaf in my right ear post-surgery.  It is not a guarantee that this will happen (some of my residual hearing might remain), but there is no way to know for sure. 

Let me explain the reality of the surgery.  When I currently hear through my right ear, sound travels via hair cells in my cochlea.   Since I don't hear well,  I imagine most of those cells are already damaged and/or nonexistent. Still, some must be healthy and functioning which explains how I can hear about 20% of sounds.  For the implant to work,  the surgeon must swirl a wire through my cochlea, all the while, potentially damaging the good hair cells, and possibly eliminating my ability to hear any sounds naturally through that ear. Of course, with the implant, after recovery,  I should be able to hear much more than 20%, but the reality is that I will be dependent on the implant and processor for quite possibly the rest of my life.  It is a terrifying concept.

Another scary question: What will the world sound like with the implant?

After my surgery, and a few days of recovery,  the implant will then be "turned on" or "activated" by my audiologist.  I've read several accounts of how other implant recipients describe the activation process, and I've learned it is a very individualized experience.  Some people hear right away; others have to work weeks, or even months to really hear well.   Some recipients describe the activation process as a series of loud beeps and static, maybe a few pops here and there, with voices initially sounding like robots or Mickey Mouse.

The Mickey Mouse voice description is tough for me.  I've cried a lot over that. 

I can't help but to choke up thinking of my children's sweet voices suddenly turning into robotics-- the thought alone was enough to make me question going through the surgery at all.  Right now, I can recognize Colin and Claire's distinct voices;  they are precious to me, even if I don't usually make out the words my kids are saying.  Other recipients have assured me that while it is hard to explain, my brain will adjust, and Colin and Claire's voices will become "normal" in time.  Still, I feel like I'm saying a final goodbye to those voices next week.  I keep questioning if my brain will remember the pre-surgery versions of them calling me Mommy.  It's tough to think about.

I also fear how I will make sense of music.  So many people have expressed excitement that I will be able to enjoy music with the CI, which is a strange concept to me because I have TRULY enjoyed music as a hearing impaired person.  For example, I've been dancing for as long as I can remember... probably since I could walk.  Some of my best performances include competing as a hula dancer at the age of 5, an epic solo performance to Janet Jackson's Rhythm Nation in fifth grade, choreographing a huge group routine to Debbie Gibson's Electric Youth, and several age-inappropriate routines during my middle school years (Giving Him Something He Can Feel at a Bat Mitzfah?  Yes, that was me.  I'm so sorry, Mrs. Leviner.)  As an adult, I'm still dancing.  I consider myself quite skilled at Zumba, for example, and when a tipsy lady at a wedding wants someone to join her on the empty dance floor, my hand is the one that she grabs.   I am totally cool with this; I love to dance.

Me and my happy place: The dance floor

If you haven't seen me dance, then maybe you've seen me sing...   Give Me One Reason by Tracy Chapman, Melissa Etheridge's Come To My Window, What's Up by Four Non Blondes... I  have my karaoke performance favorites and I am not at all hesitant to share my vocals with the world.  I am also very good at recognizing songs, strangely enough.  I am constantly identifying background music in noisy restaurants- much to the surprise of my husband who usually has to really focus to hear the song- and yet,  I can't hear a person talking directly in front of me.  It makes so sense, but I've always been thankful that I am able to enjoy music no matter what.

When I was initially considering the surgery, I just assumed my understanding of music would become even better.  I would be able to hear better, after all, so music must become clearer, right?

A few weeks ago, I talked with several recipients and they shared with me some not-so-good news.

"Music appreciation," the one lady stated, "is probably the most difficult part of hearing with a cochlear implant.  Music is so complex that it takes a long time before the brain can make sense of songs."

This thought has been difficult to accept.  Much like not being able to hear the natural version of my kids' voices, I mourn that songs might sound different to me after surgery.  I have faith I will adjust, but it's frightening, nonetheless, to possibly lose something so precious to me.

I'll end this post with a final fear and an interesting question.  I was recently reading about a recipient's experience, and she wrote how she still "hears" a drilling sound  (FYI: The surgeon will drill a hole in my head during surgery.   You would think I'd be scared of that, but it's the next thought that really bothers me).  So anyway, this woman wrote how she still hears the drilling noise, probably because it was the last sound she  heard before losing what was left of her natural hearing.  I am PRAYING that this does not happen to me.

I was just telling someone this story and she thought up a unique solution. She suggested  I ask the surgeon to play a song next to my ear while drilling, increasing the chances that if I must hear a ghost-sound following surgery, it will be music, and not a drill.

So my question:  What song would YOU pick?