Two Scary Words
“Courage, dear heart.” -C.S. Lewis
The word “brain” isn’t scary…until it’s paired with the word “tumor”. Together, these words would incite fear in anyone, and they did for me just 3 short weeks ago.
At first, the doctor called it an “Acoustic Neuroma”. Those words together don’t sound very scary or intimidating, which is probably why he called the little neoplasm in my brain an acoustic neuroma instead of a brain tumor (which is, thankfully, benign!).
So here it is, Hi. I’m Hailee Reeder. I am a mom of 2 sweet little boys, wife to an amazing dental school student, and now, an Acoustic Neuroma Warrior.
My journey didn’t start when they found this tumor 3 weeks ago. It started in February of 2016 when I picked up the phone in my classroom and couldn’t hear the person on the other end. Nothing. Silence. Enough to make me call an ENT. When I called, they told me I could come in to see the doctor in a few weeks. Then I told them my hearing disappeared today. The voice on the other end sounded a little more urgent now. “We need to get you in sooner. The doctor can see you tomorrow.” Well, that was comforting. Bryan came with me to my appointment and they had me take a hearing test. Can I just tell you how incredibly terrifying it is to know you should be hearing something, but instead there’s just nothing? I mean, if they turned it on full blast (100dB) I could hear some static that I assumed were words, but couldn’t tell you what words were being said. Other things that are 100dB’s? A jet taking off at one end of the Titanic, while I’m at the other end. Because I was pregnant, the usual protocol wasn’t going to work because taking steroids is not encouraged during pregnancy, so he sent me over to an Otolaryngologist with whom I had an appointment the next day. The plan? Inject steroids directly through my eardrum (you heard that right, a needle going into my eardrum which is just as terrible and painful as it sounds). If my hearing was going to come back, it was going to come back after this shot. And you know what? It did…for a couple of hours. Then, silence (well, except for the never ending tinnitus). I went back for another injection a couple weeks later and the doctor told me “I mean, I can do another shot, but if the first one didn’t work, this one probably won’t either.” He was right, the second shot didn’t bring back my hearing.
The verdict? Sudden Sensorineural Hearing Loss most likely caused by a virus that attacked my cochlear nerve. I accepted it. I have gotten used to it. Until last month.
It started with a few migraines which I realized were always preceded by some pretty intense vertigo. That was new. And it was scary. So, I called a new ENT because it just didn’t sit right with me. More hearing tests, and a reorder of the MRI that the 1st ENT ordered, but the otolaryngologist assured me I didn’t need because he was certain of my SSHL diagnosis.
I went in for an MRI and I was sure everything would be fine, there wasn’t going to be anything abnormal. Afterall, I was already diagnosed with SSHL. I accepted it. I had gotten used to it.
The next day I got a call from my ENT to go over my results. “Acoustic Neuroma”. He told me that this diagnosis was out of scope of practice and that he wanted to refer me to Barrow Neurological Institute. I didn’t think much of it because I was going to be heading out on a cruise with my husband the next day and I didn’t want to be consumed by fear for the week. So I waited to research anything about my new diagnosis. And for that, I am so grateful. I was able to have an extremely enjoyable time on my cruise and I needed that so that I could endure what I was going to discover when I got home and started researching.
“Acoustic Neuroma” suddenly turned into “brain tumor”. I have a brain tumor. A brain tumor? Everything I had accepted about my hearing loss was now out the window and I had been overwhelmed with fear. A very real, very consuming fear. I grieved. I wallowed. I threw myself a good ole pity party.
My pity party ended pretty quickly when I was reminded that faith is stronger than fear. I will get through this and I won’t be alone. I have my family and friends close by that will reassure me, comfort me, hug me, and remind me that I can get through this, no matter what the journey will look like. And this is the reason for this blog-to document this journey, the faith it will require, and the hope that I have to keep having so I can make the best choices for me and my family.
I’m so sorry you have this trial, sweetie. Thanks to my cancer, I know a little bit of what it is like to have your world change overnight. Not something I would ever choose or wish on anyone, but I know you will deal with it (there is no other choice). I think your blog is a good idea. It is good for others but also good for yourself. I think the hardest trials are the ones where you cannot talk about it to anyone. A burden is lighter when you share it, even if they can’t do anything in particular to help. I have another young friend who is moving along the brain tumor journey. I can connect the two of you if you would like. I will pray for you, and I may be available for something more earthly if you need me.
Hailee, that sucks! You are so upbeat, vibrant, happy and full of life! Keep up your good attitude and faith in Christ!!