Here I Go Again

The last 5 months have flown by and now it is time for Earl's eviction. I am having my second craniotomy but this time they are using a  translabyrinthine approach. Which is a really large word to describe they are drilling a hole in the thickest part of my skull behind my right ear. By doing this they will have a better view of my facial nerve when trying to evacuate Earl. Then they will steal some fat from my belly to plug that hole. After that they will place a metal plate over the area and as my ENT doctor said "baseball stitch" me up. 

My 2nd attempt to stop. Stereotactic Radiosurgery. The radiation

Good news is they cut my vestibular nerve last time. I had no meaningful hearing in that ear and it actually made hearing more difficult when it was whole. So how is that good? My body has already compensated for the loss of hearing in that ear. Our hearing does way more for our balance than you would imagine. I have come a long way in my compensation for my hearing loss to the point where many of my coworkers did not realize I was deaf on the right side. My recovery from this surgery should be easier due to the fact that I have been living without my hearing on that side for almost 6 years. 

Returning home after 1st surgery. I lost my ability to use my right arm cause a butterfly need was left under me for 12 hours compressing my brachial nerve. It came back after a month :)

So as White Snake said it best....Here I go again. Sometime today between 2pm and 4pm they will call me and tell me what time to be at the hospital tomorrow. I cheated and know my surgery is scheduled for 0800, first case, and the approximate O.R. time is 515 minutes, which is about 8.5 hours. To put into perspective my last surgery was about 12 hours long.  Since this is my second rodeo I already kind of know the drill. I will check in. Then go back to central and get little lifesaver looking probes clued all over my head. After that I will go for a short MRI to map my head. Then go back to central where they will give me some happy meds to make me calm. There is a weird since of relaxation when having a little bit of foresight to how things may go.

I have a harder time with processing the fact that Earl is growing this time. Mainly because I feel fine. I understand though that currently Earl is growing right into my brainstem. My life source. It is easier for the doctors to ensure my safety and well being operating on him while he is smaller. 

So today is my last day before D day. I am going to wash my hair multiple times with my nice Kenra shampoo that I love. I know I will have to use baby shampoo for 3 months and that sucks. I am going to put on my makeup and smile. I fear losing my smile. And I am not going to waste one day I have that I am able to. My husband said it best during one of my anxiety attacks....there is no point in worrying about what you can not control. What is the point of fighting so much for your ability to move your face if you can not enjoy every minute that you have it? I am going to carry and hug and my dachshunds, Jack and Dani. I will have a 10lb lift limit for awhile and Jack is a little over that :). And one of the things I am going to miss the most is....I am going to carry my daughter to her bed after story time tonight. One thing Earl has done, is help me realize the important little things in life. The things we take for granted everyday. 

So thank you all for your love and support. Send me a prayer tomorrow and some positive vibes. And smile cause you can! 

#thirdtimesacharm

As many of you may already know my battle with my tumor is far from over. I am one of the unlucky 10% that radiation treatment did not result in tumor control, meaning my tumor is still growing. So it is easier for me to write all this information down and just share it with everyone. So it make things easier to follow I will start from the beginning.
My tumor is a acoustic neuroma. Another name for it is a vestibular schawannoma. It is formed from a mutation of the myelin sheath around the vestibular (hearing) nerve. My first symptom of this tumor, who is named Earl, was losing my hearing on that right side back when I was still in the first trimester, pregnant with Autumn. Things developed over the course of my pregnancy. I experienced facial numbness, right sided facial weakness, dry eye on the right, inability to feel my tongue or teeth on the right, and eventually vertigo. The vertigo I experienced was like being drunk and having the room spins.
I had Earl surgically resected in November of  2011. Earl was big. I don't remember his exact dimensions but he was over 4 cm. Now my mom likes to ask me about the hormones so I am going to clarify something. My pregnancy did not create Earl. I already had Earl. My pregnancy DID HELP speed up his growth but he would have grown with or without being pregnant just probably at a slower speed.

Earl in October of 2011 prior to surgery

Two pieces of Earl were left behind that were stuck to my facial nerve. To preserve my facial nerve and improve my quality of life these pieces were intentionally left. It is horrible to have no feeling in your face. Your eye feels like it is constantly burning. After surgery all the things I described earlier got better. My biggest fear is having to experience those symptoms again.

Earl in January 2012

After surgery growth was seen from the beginning but if it is less than 1mm it is hard for them to tell if it a marginal error or difference in MRI machines slicing of the image. Therefore time was needed to see if Earl was in fact growing. In January 2014 I was given the option of having another brain surgery or trying stereotactic radiosurgery (the radiation). The radiation is far less invasive and has a success rate of 90% so I thought heck yes! Surgery is rough. But my radiation did not stop Earl.

Left is January 2014 prior to radiation. Right is last week March 2017

So here I go again. There are 3 treatment options for acoustic neuromas: observe, brain surgery, or radiation.Radiation did not control Earl so my only option is to have surgery.....again. I met with my neurosurgeon and they informed me they will do everything in their power to preserve my facial nerve, which means so much to me! I will meet with ENT here shortly to discuss my coming up surgery. I have some factors such as scar tissue and radiated tissue that make my case a bit more complex but I have faith that it will all be okay. 

I have my bad days and my good days. My husband, my rock, my support is absolutely amazing at calming my anxiety and helping me look for the glass half full. I may have to have more brain surgeries than the average person..... but I have to look at the positive and I have to smile at my beautiful daughter. What is the point of fighting so hard to protect a facial nerve if you do not enjoy the days you have with a functioning one? My neurosurgeon told me, "You can live a quality life and perform your daily activities with a tumor in your head. You have been doing that for 6 years. You will continue to do that."

To my brother

Brian Bender here is a old rant of mine I forgot to post :)

 In 1997 the Great Mall of the Great Plains opened. This mall was supposed to be the biggest outlet mall in the state of Kansas. It featured both outlet and traditional mall stores laid out in a half of a mile circle. This mall did not succeed to say the least. It is sad, half of the store spaces are empty. However, this indoor circular mall has become a winter wonderland for toddlers and  mall walkers.
The winter has come and has trapped Autumn and I inside our home. 14 degrees sucks. I have tried shopping like mentioned earlier, but my child needs to run. She needs to play. Her behavior out shopping is a direct result of needed stimulation. Autumn and I are the same, we don't like being cooped up all day and get bored easy. I bake out of boredom and I need to relax on this because I am starting to gain my winter coat of fat.
Therefore I decided to take her to The Great Mall of the Great Plains. I have been told before that this a great place to let your toddler run off some energy in the winter. That was some good advice. And the people that own this mall know it. There are little quarter rides placed everywhere, games, and play areas for little children. We went to a play area that only one other little girl was playing in at first but by the time I left there were 8 children there.
So now that Autumn is older I find her starting to interact with kids that are a bit more vocal than I am used to. Autumn was playing on this bridge and a little boy was trying to climb on the outside of the bridge. Autumn went to put his hands down and I immediately stopped her and said "we share the playground and we don't put our hands on others". She stopped and looked at me pouting her lips and then the boy reached over and pushed her saying "yeah don't touch others". My immediate reaction was to snap at him and I did "that goes for you too!".  Well we go on to a slide that Autumn needed help climbing up. The little boy follows us and of course he needs help climbing up too and is asking me. So where is this kids mother? Oh just playing on her cell phone.
We all do things that other parents don't agree with. Mine is I let my kid eat in the car. I am sure people would tell me my kid is going to choke and that food can always wait. But I can not stand the parent on the phone. Especially when their child is following me around asking me for help. I don't like telling others kids not to push and I definitely would never pick up a strangers kid unless they were in danger or something. Needless to say after awhile we ended up just moving on to the next play area.
Autumn had a blast running around and I was so happy I got to get us out of the house for a bit!

Radiation Week: My Story

I for some reason have a bit of a writers block when it comes to describing last week. Mainly because I slept anywhere from 12-16 hours a day and experienced some pretty wicked nausea. I have brought you all on this journey with me and now I can tell you how it went.
On Monday, my first day of treatment, I actually went to work in the morning. It was kind of ironic. Here I am teaching a student and helping patients, when later in the day I would be on the flip side in the patient's position. It was a emotional experience, to take care of people when all you want to do is cry in the corner for yourself, but you have to be strong because at the end of the day these people need you to be. The student I had was impressed by composure. When you are sick, it is mentally exhausting, at the end of the day all you want to for life to be "normal", treated the same way, and there is no point of crying in that corner because this is your life and you have to think positive and protect it. Being negative just ruins a day that you could possibly enjoy and who knows what can happen to any of us at any time. Life is precious and it is a gift. My husband walked over with me that first day. My anxiety was so high. I was just staring at the clock. It was "the final countdown". The receptionist told me they were ready for me and I met my nurses. They explained everything to me. The room is full of screens and of course the gamma knife. Which I appropriately named "The Dixie Chicks", since my tumor is named Earl. They place you on the table, in the mask, do a CT scan, then you wait for Dr. Wang, my radiation oncologist, to check calibration because they get it down to a 1mm accuracy. They move you throughout the room on the table to those white markings on the floor, and there are three which makes my name even more appropriate.

The first day, my nurses warned me would be the longest. About 45 minutes in the mask. Once it got started, radiation does not hurt while you are getting your treatment. It is the after effects that make radiation difficult. That and the laying in the mask. Won't lie when you are actually getting the radiation beam it sounds like a laser ink printer. 

The mask has a front and a back side. They bolt you to the table in it. The holes on the side is where they literally hammer it into the table.

There is a bite block in there that you are biting on the whole time. If you look at my photos I took daily after treatments you can see the red marking on my face from how tight the mask has to fit.

I woke up the next morning with a right sided headache and nausea after sleeping 12 hours straight. I felt like I have after a super rough night of drinking, where you are hugging the toilet and regretting your actions from the night before because you are throwing up water and bile. It was horrible. I had Autumn with me this day and our little ones can tell when you are sick. Autumn took me by the hand "Come here, mommy", placed me in her toddler bed, covered me with sheets and Norman (her sock monkey), and said "you no good, you sleepy". I lifted my head to look at her and she just placed my head back on the pillow. Just looking into those deep brown eyes make everything I have to endure worth it. She is my miracle.
I went into my second treatment. Got a prescription for zofran ( anti nausea med) and it only took 20 minutes. My mother drove me on Monday, Tuesday, and Wednesday. After the second treatment, we had to go pick up Autumn from my friend Lindsay's house, and I fell asleep the whole way from KU med to Gardner. I woke up in Gardner and my mom was freaking out because she missed a turn. I went inside to get Autumn, spoke to Lindsay, but completely forgot about this later. Like I said the week of radiation was truly a blur of sleeping and vomit for me. I slept about 16 hours that night.
Day 3, I felt like a person again. Much better, just tired. I took Autumn to my friend Haley's and made my journey to radiation again. Once again slept on the way home from radiation and Haley could tell I was a little out of it. I got home slept on the couch. Then slept 12 hours that night.

Had my ladies on the couch with me. You can't tell too well but that is Dani under my right arm.

Day 4, the nausea returned. My sister in law Jessi took me to radiation. We got lunch at Panera. Autumn was at daycare. I remember this being the most I ate all week. It was so good! After treatment though, my decision to eat was a bad joke and I slept another 12 hours.
Day 5, my mother in law took me to radiation and she kept Autumn afterwards. Fred was to get off work early and take me home. I got to ring the bell and keep my mask. YAY! Fred and I went to Houlihan's to celebrate. We shared a app and I got a glass of wine. This would later be yet again another bad idea. I would hug the toilet and sleep 16 hours.
Fast forward to now and I feel so much better. I am still tired and now am suffering some of the side effects from taking so much Zofran but I won't get into details about that. The fear of my face drooping is still there. And that is mainly in my head. They say if my nerve was to swell from radiation, I should have experienced this by now. I am so happy it is over. According to the literature this week and next are supposed to be worse for fatigue then last. So far, um....no, last week week was horrible. But I am so happy this part is over. I have a follow up with Radiation Oncology in a month to see how I am doing. Then my next scan will be in July with Neurosurg. I have a feeling I will be a nervous wreck that week! But that can wait. Live in the moment. Cherish the day! I know my tumor will be a life long journey. There will always be scans. There will always be appointments. There will always be a chance of it growing again. Which radiation has a 90% success rate but technology and radiation is changing yearly so there is not much research about the long term success of stopping tumor growth but up to 5 years.  I feel good and have a beautiful family, there is no reason to feel pity for myself. I accomplished something last week for that I am proud of myself. 

Final Countdown! 2 days

The five stages of grief are the emotional stages that one experiences when faced with death or extremely awful fate. The stages are denial, anger, bargaining, depression and acceptance. I always think of this episode of Robot Chicken I saw, where this giraffe is stuck in a tar pit. I somewhat relate to this giraffe. I am now in the stage of acceptance. I am happy to say.
 I was reading my information from my doctor's office, a pamphlet "Understanding Radiation Therapy- A Guide for Patients and Families". The first sentence in this book is "You've been told you have cancer." Okay.....wait a minute.....I don't have cancer. But the reality of the situation is most people that undergo Radiation Therapy have cancer. The typical treatment plan for radiation is 3-6 weeks, 5 days a week. Mine is only 1 week, for 5 days in a row. All the information I am given about radiation all say things like "to prevent or stop cancer to spread", "lessen the chance the cancer may come back" At the end of day. Things could always be worse. Most of the people I am sitting with in the waiting room are facing cancer that if they don't stop, it is a life or death situation. My tumor is not going to kill me. It may damage my face, which is a HUGE deal, but it will not take my life.
Today I baked cupcakes. I love baking. If you follow the directions, you will always come up with something fantastic that puts a smile on people's faces. I take my analogy of baking and use it towards my health. If I follow the directions to the best of my ability, the outcome will be amazing and will put a smile on my face and the people I choose to surround myself with.
Sure I am scared. Don't get me wrong. But I am looking forward to ringing the bell after I complete that last treatment next friday. I am looking forward to the future. Sure I might now have to see a Radiation Oncologist along with my Neurosurgeon for the rest of my life, but what other options do I have. I have received some letters and cards this last week. I thank everyone for their kind words and support through all of this. Your words and actions of sending out cards, keep me strong, keep me positive, and help remind me that it is all going to be okay. It is the simple things that can change a day, so thank you!
I start treatment Monday. My paperwork for work is in. Child care for treatment times set up and rides to treatments arranged. Now I just have to do it! Wish me luck! 2 more days till treatment time.   

2 More Weekends. 1 and Half More Weeks

The anticipation. The constant feeling, touching and looking at my face. "Is it drooping?" "Is it tingling?" "Do both sides feel the same?" "Please God don't grow and push against something in this short little time I wait to begin radiation." The jokes. The feelings of this is all going to be okay. The countdown. The anticipation.
These are just a few of the thoughts that conquer my thought process everyday. The wait to begin a procedure or have a surgery is just taxing on someone. You just want to get it over with. Feel normal again. My husband has played this game before with me. And you can tell. The minute I begin touching my face. He stops everything looks at me and says "Honey it is going to be okay. We are almost there." Today on Valentine's Day I am so happy to have him and celebrate with him. It makes me forget the sickness, the fear and the anticipation.
I got a letter the other day that was just kind of like a slap in the face. You have been denied life insurance due to.....acoustic neuroma. No matter how much better I feel or how long the beast lays dormant in life, I will never qualify for a life insurance policy that requires a medical background check. This broke my spirit just reading it. I am 29. If something happens to me, my husband and daughter will not be left with much. And no matter how healthy or what ever good news I receive in the future, I will always be too sick and risky for life insurance. Talk about something I never would have dreamed about having to face before I am thirty.
I have 2 more weekends. One and a half more weeks till treatment time.
Hold your loved ones close today. You never know how fast something can change and alter your path in life. You forget how much the little things matter.

My amazing mask for radiation

It was hot plastic that they lay on your face and you have to stay still for 25 minutes while it sets. I wish this process upon no one.

Autumn's Valentine's Day gifts to her Grandmas

Feelin' Lucky

Luck varies. This is the first thing that is mentioned when google search "luck". Even its definition can change based on philosophy,  religion, ethnicity, ect.. I personally agree with the definition of luck as being "events that influence one's life and are seemingly beyond one's control".  My luck these last couple of weeks have been below desirable. Who ever came up with that whole things happen in sets of three, I wouldn't mind punching. The thing is though, I do believe that all things happen to us for a reason. I do not sit there and dwell on the bad things that happen to me because shit things can always be worse. And I do truly believe that. I could have died during surgery. I could have found out about this tumor early in my pregnancy and had to have to make a decision that would require me to question myself everyday. When my car died on the highway, it was the weekend, I was able to make it over to the shoulder without getting in a bad car accident. With my phone, shit at least the one and half days I went without one my car decided to still run good.
Tomorrow is my big radiation oncology appointment. First off, you get good parking. I know that would not be a positive thing most people think about but.....heck yes I will take that. The thing is though, patients get really good parking for radiation oncology because they are really sick. I have no symptoms from this tumor growing. I feel perfectly fine. It is such a emotional roller coaster to be going into a appointment because in all reality, I guess I am sick. I have a tumor growing in my head. I fear these treatments because they will probably make me feel sick and I have very high anxiety of my previous symptoms before surgery returning. I hated the tingling all over my face, the inability to chew food on my right side of my mouth, the eye drops/gels, drinking water and having it come out the right side of my mouth, and plan old just looking in the mirror and not recognizing my own face.
I know I am lucky. I have a good support system. I tackled a huge ass tumor and came out smiling. I have a excellent medical team. Everyday I take care of patients, I am able to give hope. No one talks about the positive outcomes or has internet sites dedicated to successful stories. I am a positive story. This radiation my be a set back but it was always in my original neurosurgeon's plan. I knew this possibility existed since waking up in the ICU.  At the end of the day luck is in the eye of the beholder. Luck defines the events that influence ones life but it is my life and I will take from it what I want. And at the end of the day I still feel lucky.