The Wall of Love

I feel as though I have been inundated with love and support since before I went into surgery.  There has been a constant stream of gifts and cards and messages in every possible way.  This is my Wall of Love where I have posted almost every card and picture.

This is a glimpse of my hospital room at one point with flowers and balloons.  I knew they were there, but I did not look at them all that much.  My vision is so bad that if I do not have my glasses on I really can not see much of anything but blobs of blur.  Add on top of that my eyes would not sit still for a second I just did not bother looking around all that much.

The kids' artwork was displayed prominently in my room, again blurry but I knew it was there and helped me along.

 And these are the flowers on my table right now!

This is just a huge THANK YOU to all of my friends and family that have been sending me love, support and encouragement in so many different ways.  Thank you for taking the time to send me messages, cards, flowers, balloons, fruit, gifts, and even coming to visit me and walk me around!  Every little gesture means so much to me.

With Love,
Kristi

The one week hangover: Arnold's legacy

One week ago today Arnold was surgically removed from my life.  The ride since then has been hellish.

Day 1: Pre-op
What a machine UCSF is.  Everything is so organized and together.  They run like clockwork and take such good care of everyone, patients and loved ones.

We breezed into the city and self-parked.  Spent about 1 minute in admissions where they handed me a folder and sent me to the surgical waiting area.  We checked into the waiting room where they are very strict no food no drink in those areas for all of us that are fasting.  They took down Greg's name and number so they knew how to get ahold of him for updates.

My Big Brother, Kent, was there to meet us and we just visited in the waiting room until they called us up.

Then like little drones, we were called and directed to the "M" elevators, up to the 4th floor into the only room open.  We were given a bed number and escorted there by a staff member.  I received a large yellow bag for all of my belongings, Greg ended up just taking all of that with him.
Then, all of the people started coming by:

1. Dr. G - Dr. M's resident
2. Another doctor that was Dr. L's resident
3. The anesthesiologist
4. The anesthesiologist's assisant
5. Dr. M - neurosurgeon
6. Dr. L - ENT/otolaryngologise
7. Nurse S, head of the OR nursing staff
8. Nurse E, head of the neurology surgical nursing staff
9. Nurse J, the nurse taking care of me in the OR

I know there were more, I can't remember who they were.  They all asked me about the same questions, checked that I was marked in the right place and were just nice, professional and quick.  Soon it was past 8:30, Dr M has forgotten to do something in the computer so we had to wait for him to complete that before they wheeled me in.  Greg watched me get wheeled into the OR and then that was is.

Kent left a little before 8:30 as he had a meeting.  Yes, life moves on even when I am in surgery.  I have to take this moment to thank my big brother for his assistance on this journey.  I have mentioned before he was the catalyst that made me seek out the doctors at UCSF.  Having him there to help us navigate parking and where to go has made this easier on Greg and for me.  Because he is an employee of the medical center, he was able to get us concierge status, which just meant a few extra kudos for us and our stay.  Most importantly, though, he was there to see me into surgery and when I got out.  He checked in on Greg and helped keep him occupied.  He has been a big support and I am so thankful for all that he has done for us.

Once in the OR, I really tried to look around and see what was going on.  Honestly, it kind of reminded me of the room of requirements in Harry Potter.  There were just machines and contraptions all over the place.  It was a big room and had big lights, then lights out.

Day 1: Surgery
I slept.

Day 1: Post-op/Neuro ICU
Next thing I knew i was all bundled up waking up with a massive headache and a very dry mouth.  Greg was there, Kent was there, I asked for pain meds.
I tried opening my eyes and they bounced all over the place like a pachinko machine! I felt miserable and wanted to sleep.
I believe that first night there were a lot of people around.  My other brother, Kevin, came by for awhile.  The doctors came, various nurses, etc.  I hardly moved and just wanted to sleep. My mouth was dry so Greg was able to dab it with a sponge.  I hadn't a prayer of taking a drink.

Day 2: Neuro ICU --> Neurology ward
The Neuro ICU is not a restful place.  There seemed to be people around all of the time and I was constantly checked.  The narcotics were making me groggy but I was not sleeping very well.  I did not feel like I ever really went all the way to sleep.

This first day I'm fairly vague about.  Lots of doctors, residents, etc. came by.  I tried to sleep alot.  Overnight I had graduated from sponges to ice chips to actual water.  They were trying to get me to take pills as their effect would last longer.  Interestingly enough through all of this, they did not actively manage my pain for me.  I had to ask for pain killers when I needed them; they did not come give them to me on a schedule or anything like that.
I basically spent al day in the Neuro ICU awaiting a room.  Because of Kent, admissions was holding out for a private room for me!  It was completely worth it.

I had a post-op MRI sometime that morning.  They wheeled me out with everything attached.  They warned me of bumps at which I would clench my teeth in hopes that my head would not jiggle too much.  They had to remove all the monitoring pieces on my chest and replaced them with MRI specific monitoring pads.  It seemed like quite a process and the whole time all I could do was just lay there wishing I could feel better.  Sometime later Dr. M came by declaring the MRI was clear!

At one point the Physical Therapist came in and got me up and I walked into the hall, then went back to bed.  It was hard, there was nausea and nothing seemed to want to sit still for me.  But, I did it, that's what counted.

Mom, Dad, Kevin and the kids made it for a visit sometime too.  They let them come into the Neuro ICU after checking their temperature.  I was so glad to see them, for what little I could look at them.  They did not stay too long, I was not very good company.

Soon after I was moved to the neurology ward of the hospital into my own room.  All the monitors were removed from me, but I still had tubes coming and going in every direction.   I think I can sum up about how many things they had all over me in the ICU:

1. IV on the right
2. IV on the left
3. Instantaneous blood pressure gauge
4. lumbar drain
5. foley catheter
6. at least four sticker type monitors on my chest
7. both legs were wrapped in inflating pads that continuously filled with air and then released.  This was to keep the blood moving so I would not develop clots.

  <--That's the pump!

Day 3: The Lumbar Drain
As soon as I was moved to my regular room, the lumbar drain was turned on.  It actually is a little vacuum that slowly drains Cerebral Spinal Fluid (CSF) from my spine and thus from my head.  The rate of drain is directly related to where my head was.  So, I could not move my bed up and down, I could not lay down, was always a little tilted.  The purpose of this is to decrease the pressure in my head so everything could heal and seal up nicely.  The effect, though, was so discouraging.  I did not want to move because my head would throb and the pain shot up so fast when I tried to get up.  In general I felt miserable with little to no motivation to move or do anything.

Greg left in the evening to relieve my mom.  Both kids were getting sick and my Mom had a relapse of her cold.  While I would have loved to have Greg stay, I am very thankful that he had to go.  He would have been miserable staying in the hospital with me.  They check my vitals every 4 hours.  They are in just about every hour to check that the lumbar drain is at the correct range.  You never really rest while in the hospital, but with how I felt this day I was not sure how I was going to manage to get home on Sunday.

By the time Greg left, they decided to slow the drain from between 10 - 15 to 5 - 10, whatever that means.  It translated into me feeling a tiny bit better after a nap.  I even had visitors that evening, and was able to smile and converse.

 I can not believe how much CSF they siphoned out of me.  Was there anything left to hold up my brain?

Day 4: The Penthouse Suite
My head started throbbing more and more through the night.  By the morning, the new day nurse was determined to get me up and about.  I had to control the pain so I could move.  I was reluctant to try a new drug, but obviously just Tylenol was not enough.  Nurse E gave me Norco, which is acetaminophen and hydrocodone.  She made me get up and my head hurt.  So, she shot me full of demerol so I could manage to sit up for awhile.
The Norco did not affect me as heavily as the oxycodone, I was able to sleep a little, function ok and control the pain.  In general, this was a much better day than Friday.  I was able to sit up three times for about an hour.  I walked the corridors twice, once I made it around the nurses station and back.
Sometime at night, they removed the lumbar drain.  I then had to lay flat for 6 hours so it could heal.  I was thankful to be able to lay down, but then I still was not optimally comfortable.  By morning, my head was hurting again.

Day 5: Hospital --> HOME
My first time getting up this morning my head throbbed.  I had not had any pain meds for quite a while, so I popped a tylenol to see where that got me.  I managed to be up and nibble some breakfast.  I even took a walk before heading back to bed.

The occupational therapist came by and talked with us about getting along at home.  She had me practice using the walker and suggested she will send the Physical Therapist in to evaluate and possibly prescribe a walker for home.  She also suggested we would need some in home consultation in about a week.  All sounded fine to me as I was so wobbly and everything swims so badly when I stand up.

I settled in for a nap and eventually Greg headed out for lunch.  Dr. M came by sometime as I was waking up to see how I was doing.
Dr. M: "So what do you want to do?"
Me: "I wanna go HOME!"
Dr. M: "Ok, call your husband and get out of here!"

Dr. M also mentioned that he will be presenting my case as a small tumor that they operated on (mostly just radiate these small ones) with excellent facial nerve outcome.

So, a couple hour later, I was in the car on my way home.  Dr. M had cancelled any recommendations from the OT/PT and just sent us home.  The ride was long and bumpy, but somehow I made it through and into my own bed.  It was such a relief to be home!

Day 6: HOME
There is something inexplicable about being home versus in the hospital.  I by no means am back to normal, but I feel better and better ever so slowly.  Mom made me wintermelon soup and oystersauce noodles.  The soup was SO good and really hit the spot.  I think I drank that for three days.  My appetite has slowly returned and my vision is slowly getting better.  My left eye still likes to bounce around and I have a hard time focusing on anything to read.
In general I feel that I can make it through this.  I was not so sure in the hospital.  I felt so awful and did not feel like it was getting any better.  My best analogy, I feel like I have been hung over this whole time! 

Mission Accomplished!

Kristi's surgery was a complete success!  The Doctors were able to remove Arnold the tumor completely and preserve all facial nerve function.  The post-op MRI was declared 'beautiful' as well.  Kristi has been moved out of the ICU and is now in a regular room where she continues to be groggy from all the pain medication.  She did manage to get up and power through some serious pain and nausea to walk through the ICU amazing both me and the Physical Therapist.  This was all less than 24 hours after having the surgery!  The next steps are to spend more time on her feet, eating some solid food and getting the lumbar drain removed.  I'm confident Kristi will blow through all those requirements no time.

Kristi has Entered the OR

Kristi was just wheeled into the OR in good spirits.  They expect to be done around 4pm today.  I will post an update as soon as I am notified of the successful completion of her surgery.

Franken-kristi

This was an unexpected event today.  For my MRI, they placed about 8 markers around  my head.  You can see three on my forehead:

There are about 5 more scattered around my head for which they shaved patches into my hair and attached.  Don't worry, I did not freak out too badly that this was happening.  I do have to keep these on all night for surgery tomorrow.  That means no showering: they can not get wet.  Otherwise, I do not have to do anything special.  I can sleep normally and if one or two fall off it is ok as they are all marked with a sharpie dot in the center.

What are these for?  They are markers, so on the MRI they highlight where they are on the scans. Then, for the surgery, the doctors are able to use those for navigation.  My brother explained it much better, but that is about the gist of it.

There is so much I would like to write, but lately I have had a hard time gathering all my thoughts.  I have also been keeping busy trying to tie up loose ends, so to speak.  Here are a few highlights of what is on my brain:

Prepare for Surgery Workshop
Greg and I attended a Prepare for Surgery workshop at UCSF last Monday evening.  I could easily write a whole blog post on that, but will sum up that it was worth going, though not all of what they were talking about applied to me.  I picked up a few important pieces of information and it really helped to set my expectations of what going into surgery will be like.  They also stressed how important it is to sleep and relax before surgery.

The Arnold Pack
Some of you know I decided to go ahead and really try to gain some weight for the surgery.  Part of the procedure is to harvest belly fat to seal the hole in my skull.  I want to be sure there is plenty of fat there.  The last few weeks I have been drinking more milk shakes, eating until I am really full, having plenty of french fries, dessert every night, etc.  I feel like I have gained weight and the scale today said I am up 6lbs from where I normally am.  So, thanks to all those that were supporting my efforts to gain weight by feeding me and eating with me!  Big thanks to my mom for all the wonderful food she has been cooking and will be cooking for me as I recover AND for the yummy chocolate cake with whipped cream to plump me up.

Lots of Pre-op
I had my prepare call on Wednesday last week, exactly one week before my surgery.  Actually, the prepare clinic called me on Tuesday to schedule my prepare call on Wednesday.  Anyway, it was fairly brief and they added yet another appointment to the Tuesday before surgery.  
Today is Tuesday before my surgery, here is what I did today:
 
 8:30AM pre-op consultation with Dr. L the otolaryngologist.
 9:45AM audiogram - confirmed the hearing in my right ear is useless
11:30AM prepare clinic appointment to review paperwork, have my vitals taken and draw blood
LUNCH TIME!!!  I'm very glad that I packed a bottle of water to take with me as I was so busy I did not have much time to get water.
 1:30PM check-in for my MRI.  This is when I was surprised with the markers AND they poked me with an IV for the contrast.  Usually, the MRI's I have had at PAMF, they just injected the contrast after doing their initial set of scans.  This time, the had a machine inject it so they could scan while the contrast was making it's way through my system.

Four appointments does not look like much but it seemed like a lot to me.  I am wiped out and going to head to bed very soon.

Remember, no food or water after midnight.  6:30AM I will be checking in to the hospital.  I will be in the OR by about 8:30 and the drilling will commence around 10:30.  If all goes well, I could be out as early as 3PM.

Thank you to everyone that has been sending their love and support through gifts, e-mail, text, facebook and prayers.  Every single one is invaluable to me and it helping me to keep going.

Big thank you to my mom and dad for keeping the kids as of yesterday as we wade through all of this.  Our stress would be so much higher but for their love and support.

HUGE hugs, kisses and thank you to my amazing husband who is already taking care of me and has been helping me through this every step of the way.  I never would be doing this if it were not for him.

What to Expect when you are Evicting

This post may be rather disparate.  I thought it would be fun to list out what I expect to happen, then I can compare what actually happens come surgery and recovery.  Yes, perhaps this is more for me than for you, but then again, maybe this whole blog is just my own therapy anyway.

Surgical Cost
This is from Miss A:

On average, a surgery can cost anywhere from $150,000 +.  The cost to you is based on the individual patient/insurance contract.  Our office is responsible for obtaining prior authorization but your insurance company doesn’t process the claim until after the surgery. The post-operative period is three months following the date of the surgery.  All visits with the surgeon within that three month period are included in the cost of surgery.  Patients typically meet with Dr. McDermott approximately 6-8 weeks after surgery.

The Surgery Itself:
More from Miss A:

You will be admitted to the hospital on Wednesday/the morning of surgery.  The check in time is 6:30am and the surgery starts at approximately 8:30am.

What I think I know about the surgery:

• This is an all day kind of thing, an 8 hour operation
• Dr. L is in charge of drilling to the tumor, with this approach that can be 3 hours of drilling!
• A very large drill will be involved
• Dr. M is in charge of removing the tumor
• This is microsurgery, a very powerful microscope will be involved
• UCSF is very organized, according to Miss C
• I pretty much will be knocked out and the next thing I know I will be waking up and it will be all over.

The Hospital Stay:
Yup, Miss A again: 

That night (night of surgery) you will be in the Neuro-ICU.  Patients usually remain in the ICU for one night.  You may have visitors but no one can stay with you. 

The next day (Thursday) barring any complication or change in plan made by the doctors you will be moved to the regular Neurosurgery floor.  You may have visitors and they can stay with you.  

Three days with lumbar drain, then after they remove it another day of observations.

[Regarding whether Audrey and Enzo will be able to visit me in the hospital] Yes, your children will be allowed to visit you in the hospital.  They may not be able to visit you during your night in the Neuro-ICU.

What I think I know:

• When I do wake up, between the surgery and the anesthesia I will feel like crap.
• The hospital food will be awful.
• They do not ease you into meals, they are serving you normal food from the start (where's the jello?!)
• They will make me get up the first day after surgery and it is going to be the hardest thing, although I have had two kids so it may not be that bad?

Post-op:This is mostly from Miss J, the Nurse Practitioner:

Patients usually remain off work for 4-8 weeks following surgery.

Your suture/staples will need to be removed 10-14 days after the date of surgery.  This can be done by Miss J or your local physician

No driving for 3 weeks.

Physical Activity:
0 - 3 weeks: unlimited walking ok.
3 - 6 weeks: may do 1/2 intensity of normal.
No aerobic exercise for 6 weeks.
after 6 weeks: no restrictions

Post-op appointments:
6 week approximately: post-op appointment with Dr. M
6 month follow up brain MRI and appointment with Dr. M
12 month follow up brain MRI and appointment with Dr. M

After your initial post-operative appointments with Dr. M (approximately 6-8 weeks after surgery) you can follow up with your local physician if you prefer. 

...and more about what I think I can expect:

• Pain.  There is going to be a lot of pain.  Take the meds, don't be a hero.  The incision on my abdomen will hurt, my head will hurt ALOT!
• Balance issues: I *will* have balance issues.  They are cutting out my balance nerve, of course I am going to have balance issues!!  As brainy as I like to think of myself, it is going to take time for my brain to figure out how to remain stable with just one vestibular nerve on the left side.  This is going to completely suck and I think be the hardest part of my recovery.
  
• Facial weakness:  The right side of my face will not be working very well.  It will be crooked because I will not have as much control over it.  Yup, I will be drooling on myself.  One effect of this that Mr. A pointed out is I am not going to be able to chew hard foods or open my mouth very wide in the beginning.  Pizza, toast, big juicy hamburgers are not going to happen immediately.
• Stiff neck?  I will be laying in surgery looking left so they can operate.  Lady C said she had such a stiff neck afterwards she went to massage therapy to loosen it up.  It could happen to me?! 

There are of course some serious possible complication post-op, mostly due to drilling into your head.  I know I should be prepared for them, but I really just don't want to think about it.  They are rare and I just hope they don't happen to me. 

AA: Arnolds Anonymous

Ok, there is not really a support group called Arnolds Anonymous.  However, there is a nationwide support group called Acoustic Neuroma Association (ANA).  Their website is a wealth of information.  They offer a trial membership for free, which I signed up for sometime in early 2011.  They sent me a whole bunch of good stuff to read.  

By the time I signed up for this group I had learned quite a bit already.  The things they sent helped to re-affirm that I understood my case and the options available to me.  In fact, the doctors I met with, websites I visited all were saying almost exactly the same thing.  There were subtle differences and new little pieces of information or perspectives to pick up here and there, but the main text was the same over and over again.  This gives me confidence that I really do have a handle on what is happening to me and what my options are.

The ANA also has local support group meetings.  There is a group that meets every other month at Stanford and at UCSF.  I receive flyers in the mail and e-mails reminding me when these meetings are happening.  Greg has been encouraging me to go from the start.  I have been hesitant to go until I reached a point where I felt confident in my research and decisions.  So, I kept these meetings in the back of my mind.  One would come up and there would always be a conflict.  They did not hold enough priority to me to make an extra effort to attend.  

As I was in the throws of deciding when to schedule my surgery, an opportunity finally came up to go to an ANA support group meeting at Stanford.  I had no excuse to not go, so I finally went.  I had decided to go through with surgery by then, but had not scheduled it yet.  I was now looking for reassurance that surgery was a good choice and added confidence that I was making the right choice.  I knew it was time to look to people that had already been through this.

I counted about 10 patients at the meeting, all in various stages of treatment.  Some were post-treatment, some were going through radiation right then, some were like me just before treatment and some were just trying to understand their new diagnosis.  One lady in particular made the whole experience worth while.  Lady C had just had translab surgery in August at UCSF.  She is exactly my age and looked to be moving and functioning quite normal just 4 months post-op. Meeting her there gave me added confidence in scheduling my surgery.

Lady C and I have been e-mailing sporadically since then and had planned to meet up.  As you know, I have a rather crazy schedule so planning something like this just kept getting pushed out further and further.  Lady C happens to be unemployed right now and has been enjoying her unemployment with trips to Tahoe!  So, just about when I posted this blog to facebook for the first time, I nudged her to meet up.  She bravely came to my house with a plate of chocolate chip cookies in hand and experienced the chaos that is my Tuesday evening.  Once I put the kids to bed, we had a wonderful talk and I am forever grateful for the time she took to come and visit. [More about this in the next post]

As the days tick down to my surgery, I am finding I am slowly accepting that I will be having this surgery.  There are so many unknowns that weigh on my mind, but I think I can bucket them into two categories.  First, what is going to happen to me?  Second, how do I know I have chosen the right doctors?

The first question seems to be best answered by people that have been through surgery before.  Of course talking to Lady C was the best analogy to what I will be going through.  Another friend, after reading my blog, put me in touch with his friend, Mr. A,  that also went through acoustic neuroma surgery.  While his surgery was a different approach (middle fossa) and with a different practice, many things he told me were similar to Lady C's experience and strengthened my expectations.  To Lady C and Mr. A, I thank you so much for taking the time to lend your support to an otherwise perfect stranger.  I hope I will be able to pay your kindness forward to a future ANA patient.  Your friendship and support are invaluable to me.

I have found also just talking to other people that have gone through traumatic health issues and here they are on the other side in a state of normalcy helps me believe I will be ok and can be normal after this. So, for all of my friends that have shared their history of surgery and illness, I thank you for sharing your stories.  It is helpful to know what strong survivors I have for friends.  You give me confidence that I too will come out on the other side of this just as feisty as ever.

The second big question is harder to answer.  How do you know anyone is good at what they do?  Well, by their reputation.  Reviews and stars and whatever we can find on the internet give us a good recommendation for everything these days.  But how do I know I have chosen the right ENT-neurosurgeon team for this?  I have not yet found a website that ranks these particular teams, so I have to trust their reputation.  From at least 4 different independent sources I have heard this team is at the top of their game:  I could not be in better hands.  

On particular source, Dr. C, whom I mentioned in an earlier post (What do you do about someone like Arnold?) is actually doing a fellowship at House Ear Clinic in Los Angeles.  She encouraged me to consider going there for my treatment as she believes they are highly specialized exactly this type of treatment.  As going to LA is just out of the question for me, she asked her colleagues about Dr. M and Dr. L:

I spoke with our senior neurosurgeon & neurotologist- they say dr M is the only neurosurgeon they would recommend in the Bay Area. They also say good things about dr L.

To me, this was an extremely high recommendation.  

I am still apprehensive, though.  Am I concerned about the doctors?  maybe.  Concerned about the surgery?  definitely.  Will I get over this feeling?  I do not think so.  I have a feeling I will be rolling into surgery still apprehensive and fearful.