Hello again!
Wow it has been a long time since I have posted an update! As of tomorrow I will be 15 weeks post op...what a recovery it has been! So many things have happened during the past couple of months, I really should have been blogging more often.
Let me start my saying, I continue to improve with each passing week. I feel like I really turned a corner a couple of weeks ago, both mentally and physically.
I was really struggling during July/beginning of August in particular. I think the weight of what I have experienced really finally hit me. Many mornings I would wake up hoping it was all a bad dream followed by the disbelief that I was still dizzy, still extremely tired and still deaf in my left ear. I felt intense anxiety and depression for how to figure out my new life. I mourned the loss of who I used to be. I have come to better terms with what my new normal means...and as my sister puts it...who's normal anyway :)! So I have dusted myself off and continue to work on the new version of me, Kris 2.0: New Mom and Brain Tumor Survivor
I am doing new things all of the time. Things that seem everyday to all of you, but I am happy to celebrate each one of my milestones...some of which include walking up stairs with Parker, driving a few blocks, walking a few blocks in the dark (when they mess with your balance nerve it affects your night vision), having stamina to not need a 2 hour nap everyday, reading a book...and so on.
Being deaf in one ear has its challenges. Sometimes I wish I could wear a sign to let people know that I am not ignoring them, I just have no idea that they are talking to me. I have to constantly make sure that people are walking on my good side. It can be so frustrating at times. I am so, so thankful to have good hearing in my right ear! This leads me to my next piece of news.
In a couple of weeks I will be having another surgery. I know what you are thinking...what kind of sadistic person signs up to have their head drilled into again?!? Well, there is technology out there that may help give me 'hearing' back on my left side. It is called BAHA (bone anchored hearing aid). As it turns out our bodies are capable of conducting sound through bone. The BAHA works by having a metal rod implanted into your skull. Then a small box, the sound processor, attaches to this metal prong. The device works to pick up sound on my bad ear and sends it via my skull to the cochlea of my good ear. So I am not actually hearing anything on the left or bad side per se. Most of my inner ear and hearing nerve were destroyed in order to get my tumor out. This is why I can't use a regular hearing aid. They just amplify sound. I don't have anything to process that information. So my left ear is really just for show now :) So when you see me next, you will know what the tiny little box snapped to my head, behind my ear is. I can even plug my ipod into it directly and don't need earphones...straight sound to the brain. This device will give me some of my surround sound back that most of you folks reading this enjoy!
The procedure will take under an hour and they do it while I am awake. This makes me a little squeamish, but it will not even come close to 11 hours of actual brain surgery. Nonetheless, wish me luck. I had tears in my eyes when I tried on a demo of the device. To hear someone talking on my bad side again was miraculous! Hurray for advancements in technology! Once they drill/screw the metal rod into my head, I wait for 3 months to allow the bone to heal around the peg. Once it heals I will be ready to wear my new hearing aid processor. Supposedly, it won't give me directionality back, but at least my blind spot isn't so big. Directionality is a handy tool that allows you to tell where sound is coming from...with one ear you have no clue. So when you call my name from a distance I literally have to look all around me to see where it is coming from. It is a pain in the rear end when you forget where you set your cell phone and don't know where its ringing from let me tell ya....
The longest thing to heal has been my eyes. My tumor did a number on them. They are much improved! However, they have a long way to go yet. I am hopeful that between my therapy and time they will work themselves out. Basically when I look to the left or up and to the left my eye can bounce around. This has made it tough to do much driving. It can also take me a minute to get focused in new or different surroundings (so that I can get oriented). I just keep exercising them and try to stay patient. Many of my tumor friends tell me that they continue to improve even up to 3 years post-op!
My physical rehabilitation is going well! My physical therapists were impressed with the amount of balance I had 4 weeks post op and my steady improvement. They said that the fact I was a gym rat prior to getting sick really worked in my favor. I have gone from learning how to turn my head to look both ways before crossing a street to catching balls thrown at me from different directions! I have to walk and do balance exercises everyday to stay sharp. My right brain has taken over that job for my left and needs the constant stimulation. My amazing husband creating a balance gym in our basement for me, complete with a balance beam for me to use in between PT sessions.
In summary, I am doing a lot better, but still healing. I still feel so lucky to have the outcome I did. I have talked to other people with my size of tumor that have full facial paralysis, weights in their eyes so they can blink or double vision. I am lucky to be alive and smiling! When it comes down to it, life is hard sometimes and everyone has their struggles. When it comes to balancing it out, I have way more to be thankful for than to complain about.
Parker has been instrumental in keeping me moving forward...He has given me the strength I need to get out of bed in the morning and fight through the rough days. I know that he deserves all of the love and attention I can give him. I could have never imagined the amount of joy he has brought to my life. He is such a healthy and happy little boy!
Enough of my rambling. I will try to post again soon and not so far between! I know you are all dying to see some new scar pictures!
Thank you all again for the words of encouragement throughout these past few months! It means the world to me to read and hear from everyone!
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We are excited about your upcoming implant.....we know someone who is delighted with his. It has helped his balance too. Hang in there. Once the surgery is over you can move ahead! Keep posting.....we look forward to your news. You are in our thoughts out here in California, and we were delighted to get to know you and your family while you were here. Love, Mary
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