Had my tests today....

I had an appt at 1:00 today for some tests and I would be there for 3 hours. The tests were very interesting and some I never want to do AGAIN!
1. This test I sat in a chair and watched a screen display the letter "E" in different positions then I would name the position (up, down, left, right). The first two rounds my head was still, the third and fourth rounds I had to move my head from side to side as if I was shaking my head "no", this made me really dizzy but I did well.
2. The posturography test was really weird. I stook barefoot on a platform and wore a harness that would hold me up if I fell. There was a wrap around scene around me also. This test was about 15-20 minutes, I would have my eyes open and closed at times. Sometimes the platform would move, other times the scene would move, and sometimes they both moved. I was confused sometimes and didn't know if the platform or the scene was moving. The harness and nurse had to catch me one time, other than that I stayed on the platform.
3. The rotary chair test was CRAZY! I sat in a chair in a dark room with a camera on my right eye that recorded eye movements. The chair would spin around fast and slow, and move up and down, and rock all different ways. I was completely disoriented.
4. This test was not painful but I did not like it at all. Seemed simple enough, lie down then the nurse sprayed water in my ear. Boy oh boy, was I in for a shock. I layed down, then cold water was sprayed into my ear for 30 seconds, about half way into the spray, I got VERY dizzy. Then she waited 5 mintues and cold water was sprayed into my left ear (tumor side), I did not immediatly get dizzy but eventually I did. Next warm water was sprayed into my ear, then waited then she did my left year. Using the warm water, I had similar results as with the cold. Normal results are getting dizzy about half way through the spray. After she was done, I was so dizzy I thought I was going to be sick.
5. The last test didn't require me to do much but turn my head and listen to sounds.

I get the test results tomorrow and do any follow up testing, then the doctor will make a recommendation.

I think I am going to have nightmares about water being sprayed into my ear, I still feel it.

Still sick

Isabelle and I have been sick since Wednesday, I think on Friday our symptoms were the worst. Both of us are on antibiotics, Isabelle is doing better but I still feel very sick. Tomorrow I have my final exam for school, then next Wednesday I will graduate. I am getting anxious about my tests coming up on Thursday, then I will find out the results on Friday. Maybe then I will actually find out what the heck I am going to do. After thinking about my last visit with the doctor, I feel like the doctor is not taking my concerns seriously. I know that my tumor is small and most people when they are diagnosed with a tumor it is rather large, I feel like he isn't taking me seriously since mine is small. However, I am giving him the benefit of the doubt, I am sure since he see's these often he is somewhat desensitized about them. Hopefully, a lot of questions will be answered this week at the doctor's office.

Whew!

Well, I survived the weekend....barely. Isabelle's friends and family birthday party was this weekend and I swear no matter how much I get done before hand, it is always chaotic. We had a bushel of oysters, 8.5 lbs of shrimp and hot dogs. The good thing about chaos is you tend to forget about other things aka my tumor (Lloyd) A test that was done at my last doctors appointment was where I had to march in place for 60 seconds with my eyes closed, the results I move forward slightly and to the right 45 degrees. I have asked friends and family to do the test just to see what some normal results are, and I can honestly say, I still don't know what normal results are. Maybe I don't have normal family and friends, although I didn't need a balance test to confirm that. My mom marched about 4 feet forward and to the right about 15 degrees, Jeff turned to the right slightly, and my friend Shellie... well she is always out of whack! (Love ya Shellie) Any time I have talked to someone about my tumor and described my symptoms, it seems like everyone has all my symptoms too, maybe this tumor things is an epidemic. I am kidding, my symptoms are actually pretty common individually but as a whole can be bad. I completed my last two assignments tonight for my final college class and will take my last final exam tomorrow, then I am DONE! Miami bound in 16 days! With as long as I have gone to school I should have my doctorate degree, but I am equally happy with my dual major in Business Management and Finance. Isabelle will turn 5 this Tuesday, where did my baby girl go? She is becoming quite the young lady. Today, would be the day they induced me and my 30 hours of labor started. I love you Isabelle, well worth every hour.

Not good news, Not bad news, just news....

I went to see the specialist today. First I was given a hearing test, which they put me in a room which was bizarre in itself, it reminded me of the popular optical illusions that you stared at it long enough, an object would appear. Anyways, the room was very weird. They did several hearing tests along with the word discrimination test and I did well on both, minor loss in my left ear but overall good. The audiologist conducting the test mentioned the nurse that would take my information had an acoustic neuroma and would share her experience. After the hearing tests we went into an exam room and the nurse, Ericia came in to document my symptoms, she gave me a handout for a support group and a copy of a book she wrote about her experience. Next, the doctor came in, he went over my scans and we saw my tumor (Lloyd). The doctor was impressed that I had already spoken with House Ear Institute and said I was getting good information. He basically said everything that I have read, my three options are:
1. Wait and Watch
2. Radiation
3. Surgery

He wants to run some more tests to find out more about the tumor, then he would give a recommendation but it would more than likely be watch and wait, then have an MRI in 6 months to see if there is any growth. Ideally, I want the tumor to not grow at all. I asked him what the goals are when you have this kind of tumor, they are:
1. Save your life
2. Save neurological function
3. Save facial nerve to avoid facial paralysis
4. Save hearing

It is almost a guarantee, I will lose my hearing so the first three are key. Obviously I would love to have my hearing in that ear but if I had to decide between my hearing and facial paralysis, I would give up my hearing. He did say that there is no way to find out how close the tumor is to my facial nerve unless he does surgery. He did stress that mine is small, however I was hoping that since it was small I would have more treatment options and less damage would be done. I go back in two weeks for 3 hours of balance testing. As I checked out, the nurse said my insurance didn't cover one of the tests and my amount is $108 to be paid that day....lovely! Even with insurance this is expensive, my portion of an MRI is $190, so I will have that expense twice a year, along with other things related to this. What else is next?

'So it wasn't good news, not bad news, just news.

Thank you for all your support!

Tomorrow I see the specialist

Tomorrow I will see the specialist here in Jax. I called them on Monday to let them know about the tests that House Ear Institute recommended I get and ask if I could go ahead and get them done that day. The receptionist said "The doctor doesn't like to order unnecessary tests unless he has seen you", I said are you kidding me, I hardly think these are unnecessary, do you realize your doctor did a fellowship at this institute, I doubt they are unnecessary. She said well we don't have time that day anyways. Why didn't she say that in the first place, it isn't like a have self diagnosed myself on the interet. So tomorrow I will be having a hearing test and I hope the other ones also. I will keep everyone posted.

Is it ever going to get easier?

I find it easier to tell people of my diagnosis via the phone or through an email. I apologize for it appearing to be impersonal but the words "I have a brain tumor" aren't easy to say, especially when you see the look on their face and the silence that follows. Even typing an email or talking on the phone about it brings tears to my eyes, plus there is usually a lot of questions that follow so I answer them then direct them to the blog, where a lot of questions are answered. This just really sucks, and fear of the unknown. If anyone has a crystal ball, I'd love to borrow it, it would make this a lot easier. My first thought about treatment was, "I just want this thing out of me", which is still true right now, but with any treatment I will be giving up something. Depending on the results of the next tests, I think I will have a better understanding of the damage done. Now I am leaning more towards waiting to see what it does, but as I have said in a previous post, what ever damage that is done can not be undone, so it is a big gamble.

On a side note, something great happened today, no need to go into details but this lifted a huge weight off my shoulders. I can breathe a little easier now. Isabelle's school birthday party is this weekend, she invited girls from school to a party at gymnastics, it should be really cute. Easter is Sunday which is a huge event in my family, definitely one of my favorite holiday's, we play volleyball, corn hole, hunt eggs, and eat LOTS of yummy food. A bunch of families get together, it is unfortunate we don't make this a monthly thing with as much fun as we have. Jeff comes in tomorrow, so Isabelle and I are excited about that. She wanted us to have a race down the hallway and the winner got to give Jeff a kiss first. I think it is sweet.

Thanks for reading.