Cramming in all the normalcy

I had a great day today.

I woke up early with the kids and took Henry to gymnastics. I grabbed a bagel, a cup of decaf and my laptop. I was thinking I would maybe write another post about how yesterday was my last day at work. It felt weird, like when you graduate grade school on the last day of school. I was going to say how exhausting it is to tell patients you have a brain tumor and how now the normal day to day things are for sure changing. But I didn't write that post. In fact, I never even turned on the computer.

Even though I talk a lot at work and seem pretty personable, I consider myself a shy person. If I don't know someone, it would take a LOT for me to randomly talk to them. I guess I'm okay with this, but I do feel like I am missing out on some opportunities. Anyway, when I went to sit down at gymnastics, it was very busy, and everyone was close quarters. Because of this, I asked permission to sit next to this guy. Of course he said yes, then he made a joke about me not getting him a bagel. I smiled and said "next time" and then mentioned something generic about how it is really hard to see my son in the room because the lack of view. Then, from that time on, we just talked, THE WHOLE HOUR.  I am not normally like this, but it was nice and the time went fast. He also has a son in gymnastics that is much more advanced and it was interesting hearing his opinion.  Maybe I need to force myself to talk to people.  During this conversation I kept thinking it would have gone differently if I was talking to him 2 weeks from now.

After that, I went downtown for my 3rd ballet class. It was great. I never was big on dance as a kid, but now I am starting to appreciate it, and I feel like my body is responding well.  I hope to get back to it fairly soon after the surgery. If anything, it would be good therapy for my balance.

Once I got home, we went apple picking. I always want to do it every year, so we figured this would be the only time. The kids did great, although at the end, Henry got scared of all the bees.  Now we have a huge bag of Honey Crisp apples that is sure to last us at least a week.

Now the kids are in bed, happily exhausted.

Me, well my mind vacillates. Because I feel normal, it is really easy to forget anything is wrong. When I do remember, I start thinking about the future and the unknown. I also think about waking up from surgery and how I will have a headache, be tired and nauseous. I will be repeatedly asked to do lots of tests of my cranial nerves, and I also want to be awake when my family comes. How hard is it going to be to stay awake? Can I just force my body to do it?  Am I going to vomit (I hate vomit)? I hope my body heals quickly.

Even though I go through all of these thoughts, I know this is the right choice. There really is no alternative, not for the size of my tumor. I love my life. I love my husband, my kids and family. I have a great job and great things to do when I am not working. This is what I need to do to preserve this, so I will be brave.

Today

I think weekends are bad for me. There is too much time, too much time to think and too much time to worry

These last few days I have been working, and I feel pretty normal, like no growth in the head normal. Still, I am counting down the days until surgery. Both Aaron and I are ready to move on to the next phase. Sometimes I feel like maybe I am overacting. Is this really a big thing? I mean, really?  I will be fine after surgery, just some possible side effects.  It could be worse, right?

Then I tell myself that brain surgery is probably the biggest type of surgery out there.  Healing time is 3 months of not being yourself. It sounds like a big deal.

Right now, I am not so afraid of things. I have to trust myself. I am usually a pretty positive hard working person. I have to think that I will be able to deal with whatever happens.

That is where I'm at right now.

Fear

Last night I couldn't sleep, and I know why. I was scared for the future.

Yesterday the neurosurgeon finished his office note and sent me a copy.  I don't know why, but I read it eagerly. When I met with him, he asked me very specific questions about the sensory and motor nerves in my face. I told him the numbness in my lower right face, and I thought that was all that was involved. Apparently he saw that the muscles in my face are a little asymmetrical at rest or something (can't quite understand this part of my note). When I smiled big at the office he said it was good, so I thought he agreed that my seventh nerve is unaffected, but I was mistaken.

So, I did what anyone in my situation would do, I had a session with the mirror. I made lots of funny faces, smiled and then made my face blank. To be honest, I can't tell a difference at rest. When I smile big, there are two creases in my left cheek, but only one in my right, but that is it. I've been playing trombone fine, so it can't be that bad.  Is it there, or is what ever he saw just me normally? I don't know.

The reason this scares me is that if there is a current deficit now, I feel like there is a more chance of big damage after the surgery. I don't want to be paralyzed in half my face. I feel it would be very had to be a doctor and go into each room trying to talk about their children when all the parents are thinking is "what is wrong with this girls face."  Every day I will have to re-hash what happened and why I am left like this.

Still, having worry never changes the outcome. What will be will be. All the worry is doing is not letting me enjoy the present.  I wish I could just turn that portion of my brain off.

Also, there was another part of that letter made me cringe a little. It doesn't change anything, but he called it a brain tumor. I like to technically say that it is a growth from the sheath lining of the vestibular portion of cranial nerve eight extending into the skull and pushing on the brain.  I guess it is just semantics.

Surgery Date

Well, it is official. Brain surgery on 9-30-14.  The day before I will be getting an MRI and they will glue things on my scalp (probably for more accurate locations of things). Then I go to the hospital at 6:30. I think I will be the first and only case in that room, and what a room it is.

Here are the specifics of my surgery:
      One exceptional neurosurgeon
      One neurophysiologist - his whole job is to monitor my cranial nerves to make sure nothing
                happens to them.
      One anesthesiologist who also put the exceptional neurosurgeon to sleep once.  I guess this guy
              can be trusted.
      One special room. The actual room is an MRI machine so they can repeat the MRI that was
              taken a day before the surgery. They can make sure RIGHT away that things are good.

These things comfort me. I will be getting the BEST care. I wish I didn't need it, but I do. Whatever happens after surgery, if bad, I know it couldn't be prevented.  If it is good, I owe it all to the above.

Band

Tonight I went to my last band rehearsal.  When I got there, I told all the trombones what was going on and that I am having surgery:

I can't play immediately because I need to heal

I can't play soon because it increases intracranial pressure

Maybe I'll never play (if my cranial nerves get injured)



Yuck! Music makes me happy. When you are playing a piece and the band is acting like one and everything is clicking, you feel you are DOING something. Your whole body and mind are all about this one instant. That's an amazing feeling.

I hope I get to do it again.

9-15-14

Today Aaron and I met with another surgeon. This time it was a neuro ENT guy who does the surgery in collaboration with a neurosurgeon. When we first got there, for some reason he felt the need to tell Aaron how MRIs work in detail (polarization of water and veins show up better than arteries and other stuff). If was fine, and maybe a little amusing on my end. When you look at my MRI, there is no doubt there is something going on, no matter if you understand the physics behind it or not.

Once he analyzed my MRI, he felt like it needed to be dealt with in 2 stages (just like the other guy), but the difference was, that he wanted to do two surgeries separated by 3 or so months.  When I heard that, my heart sank.  I don't want to do two surgeries. Still, if it is better, well, then that is what I need to do. We asked him about a second surgery vs radiation and he immediately knew who we went to for our other opinion.  He stated that both approaches were fine, but he preferred surgery because radiation always carries some risk of cancer and if there is a small piece that is not irradiated, the acoustic neuroma might grow back.

After we left the office Aaron and I got talking. His reasons weren't enough to convince me I would need another whole surgery with the long recovery. I will probably have a brain MRI every year for the rest of my life. If the neuroma is still there, we will see it and monitor it. The risk of cancer from the radiation is very very low. They use a low amount and it is very directed.

Also, we met him, but not the neurosurgeon, who would be doing most of the surgery.  We looked him up and he is younger than our other doctor, so he has less experience. That can count for a lot.

Because of these reasons, we decided to go with the first neurosurgeon. We don't have an official date yet, but likely the end of this month, or beginning of next.

I am going back to work tomorrow. I will try to keep up normal appearances, but it will only be a mask.

Ballet

 

My Neurosurgeon told me to keep doing the things I normally do before surgery, so I complied. This summer I was thinking about how excited I am for Franny to start Ballet when she is 3. I felt that by her starting it, it would make me understand and appreciate it. Then I got to thinking more, and I thought, why do I have to wait for Franny? Maybe I could just do it myself.

To be honest, that was a thrilling thought for me. I know ballet is intense and demanding, but it is also graceful and beautiful.  I have never done any dance as a child except one ballet class as a 3 or 4 year old. When I had to dance for musicals for school, I would always just do the basic movements as perfectly as I could, but that wasn’t all people wanted. You needed attitude or style or something that I was clearly missing.  Still, this seemed like a good adventure for me. Something to try and learn and improve at.

I scoured all of the local dance studios and there were quite a lot of options, but most were not feasible because of my job. The one I settled on was one downtown that had lost of beginning adult ballet sessions including a fundamental class. This is the one I signed up for weeks ago.

I didn’t know about my acoustic neuroma at that point. I tried to cancel but couldn’t find an easy way to do it online, so I just decided to go for it. If anything it would be a good distraction.

So I went, and it was wonderful.

It was a very full class of beginners like me. There were quite a few guys there. Most were younger than me, but a couple were older. I didn’t feel out of place at all. I didn’t really have a ballet outfit, so I wore leggings and a t-shirt with my newly purchased ballet shoes. I looked like everyone else.

The teacher of the course was a professional dancer for 20 some odd years and seemed to be a great guy. He was interesting, funny and gave us the basics in both English and their official name.  We did lots of things; learned foot and arm position, did barre work as well as learned how to walk ballet style.  None of it was especially hard work for the body, but it took concentration to get thing right.  The hour and a half session was over in a heartbeat. I felt great.  It was fun, and I felt normal again, if just for a little while.

I can’t wait to go again

9-13-14

9-13-14

 

I didn’t sleep well last night. I’m always exhausted, but now I can never get the thoughts away. At first, it was that I was scared for my life, but now it is whatever the next step are. I just think about it and go over and over the dialogues in my head.

 

Besides learning the absolute diagnosis, last night I was worried about telling my mom.  As soon as it was official, we left and went to talk to my mom. Despite my worries, she took the news well.   I mean, this isn’t cancer. So that much is good.  It can be cured, that is also good.  This means major surgery for me, not so good, in fact the worst part.

 

My goal was to tell everyone in person, but I needed Renae’s help, so I had to tell her on the phone.  That wasn’t too much fun.  Then I told my Dad.  I think because I told two other people, I was feeling rehearsed and maybe told things too fast, but it was okay.

 

So now the next steps are telling my brother in Texas and all of Aaron’s family and then close friends and family.

For the friends, who do I decide to tell?  Hi, how are you doing, I am going to need brain surgery.  Ugh.  It’s like I have to re-hash things over and over. But, my friends deserve to know. They have been good friends and I have shared in their happiness. They can share in my sorrow.

Then what after that I guess facebook. I have been weaning off fb reciently, but is reason to restart.

I wish the world knew and we can all move on.

I feel like I have. And when I start to doubt it, I have a picture of my MRI scan in my phone that I have glimpsed at to revive my reality.

9-12-14

9-12-14

It’s only 8pm and I’m exhausted. I guess my body has been in high stress mode for two days and I am finally allowing it to relax. I have an official diagnosis: Acoustic Neuroma, just like I thought. Again, it is bigger than most, like I thought.  AND BENIGN.

 

This morning I hoped it was this diagnosis, but I couldn’t be sure. My ENT doctor called me early in the morning and confirmed the diagnosis and talked a little bit about the implications. He said it was large and surgery is my best option. He referred me to his partner, who specializes in neuro ENT stuff. I got a call back within an hour from his nurse setting up an appointment for me on Monday (today is Friday).

 

Then I got a call from my boss giving me a neurosurgeon’s name that he recommends. I called this neurosurgeon and got squeezed in today.

 

I brought Aaron with me to the appointment with the neurosurgeon, and he did everything I wished him to do. He again stated this was BENIGN and slow growing. He spoke slowly to make sure we understood things. He had my MRI images on the screen for all to see (I didn’t really want to see it any more but it was probably good for Aaron).  Then he went into the details. He talked about different therapies for treatment and which one is the best for me.  He said, the best thing would be a large de-bulking surgery that doesn’t remove everything, but most of it so the brainstem can shift back to normal This would give my cranial nerves the best chance to still function (because right now they are doing pretty good – well except cranial nerve 8).  During the surgery, one doctor would be in charge of only monitoring my cranial nerves, and the whole surgery would be done in an MRI machine so they could get information right after my surgery.  I would be in the ICU overnight to a few days and in the hospital from 5 – 14 days.  After I was fully healed (maybe about a month), then they would do radiation to catch the remaining bits of the neuroma.  At that’s it, I’m all healed.

 

They did say that after surgery I would be really really tired. I mentioned that I got a headache after running sometimes on my long runs, and they were happy to have me so athletic. They thought both the physical and mental characteristics of an athlete might help me progress quicker.  And that is exactly what I want to do.  They said that I should continue acting how I normally am until the surgery (in 2-4 weeks).

 

After I left, I felt better.  I thought this was going to be the second worst day of my life (with yesterday taking the top billing), but I’m okay. I feel relief.  It is going to be okay. This neurosurgeon has a plan. 

About an hour after the appointment I ate 2 bowls of cereal.  This was more than I ate all day.

And now the stress is leaving my body, and telling myself that I am okay with this. This is what I have to do to get better, so I will do it and move on.