When you receive a call and hear the words “the doctor wants to see you ASAP” – you know that can’t be good. Although I only had to wait two days for this appointment, it was extremely hard to stay calm. When the day had come, I think I found myself pacing back and forth in my living room so anxious that nothing could settle me at all. On my way to the appointment, I think I said the words “I really, truly don’t think they found anything”. Denial? The only explanation.
I got into the doctors office with my mom by my side…even though I said to her 1000 times “Mom, I am a grown woman, I don’t need you to come in” – she refused to take no for an answer. To this day, I am grateful she did because I only remember hearing bits and pieces of what he told me. It was also nice to have her rub my back when she knew I was holding back tears.
“So on your MRI they did find a mass – a little bigger than a golf ball and we are referring you to a really great team”. What do you mean mass? Like a tumor? but how can this be? I already have so much on my plate why do you need to throw this my way. I didn’t have the words to say because yet again, I was in complete and hysterical shock. I kindly said thank you very much and proceeded to the front desk where I couldn’t hold back tears any longer. I got a copy of the MRI and was forced to wait by the phone for yet another specialist appointment.
What I have is called a vestibular schwannoma or an acoustic neuroma (AN). Two names, one tumor. This tumor arises from the 8th cranial nerve which controls hearing and balance. The fact that I have this explains two things for me: why I lost my hearing, and why I’ve been clumsy for the past couple of years. These tumors are non-cancerous (one bonus) and they grow slowly. Therefore, it was quite unexpected when it was discovered that my AN was in the large category. Usually they don’t grow this large until middle age, but not always. I’ve been told that these tumors are quite rare and although they grow slow, they have the ability to impede other cranial nerves such as the facial and swallowing nerve. I was also told that these tumors don’t become dangerous until they start compressing on areas of the brainstem. Not only was I told that I have a large tumor, but that mine is pushing my brainstem quite significantly and that my only option for treatment is surgery.
Life as I knew it was over. My life was over, as far as I was concerned. I was scheduled to return to work for the first time since my car accident just two days after finding out this news. How was I truly going to focus on the needs of tiny babies when I can’t even focus on anything but the image of a semi-truck coming towards my car, and the image of my tumor in my head. But, I tried. I returned to work and suffered through the pain I was having from my car accident (lumbar and sciatic pain is nothing to joke around about). I was able to work, because for a moment in time my focus was helping these babies which I know and so adore. However, my mind kept wandering back to this news and I found myself telling colleagues who barely knew me “so weird, I just found out I have a brain tumor..giggle”. Those who know me, know that I will always present with a smile on my face despite the darkest days. When people looked at me with a shocked face, and said oh my god! I knew it was nothing to lightly mention. Oops! A friend and I laugh about that to this day – I’ve never been more grateful for finding something funny.
Just when I thought the hard part was over, I realized that this surgery is no joke. But what’s even worse? There is virtually only one set of doctors that do this surgery in the entire province. Therefore, after finding out I have this brain tumor, I am told that I have to wait a (long and painful) 6 weeks before seeing one of the specialists, and another 2 for the neurosurgeon. I can tell you, there is nothing worse than being told you have a brain tumor then you have to wait to talk to the person who is going to fix it. During this time I literally thought I was going insane. The anxiety that I felt was causing physical manifestations and I can tell you that a single day did not go by without an outburst of tears. I am a happy-go-lucky person believe it or not, but one person can really only handle so much. I am so insanely grateful that I have a strong support system. Had I not, I honestly don’t know what I would have done. As I told you this blog is “real and raw emotion” – this is no joke when I tell you that I called one of my best friends Laura (God bless her heart) every day to “talk me off a ledge”. Not actually, but I was so grief stricken and anxious of waiting that I couldn’t handle it. I read probably every single blog post there is about these AN. I read about a man who lost his wife because he woke up and half his face was paralysed, I read about a beautiful little girl who has overcome every challenge that has come her way, and I’ve read about a woman who just had a baby and found out about this devastating diagnosis as well. I would sit in emergency rooms and clinics just desperate to talk to a doctor that could maybe give me an answer. But it all went back to one thing, there is only one team that can help you in the province. One thing I learnt, never take for granted those amazing friends who will take the time to calm you down, show care and concern by accompanying you to the ER (thank you Celina), and never let you feel like you are overreacting.
Luckily, the day did finally come and it felt like Christmas. I got the answers I needed and was welcomed with the best bedside manner that any doctor could ever give. I have now seen both doctors, heard all the risks, such as the potential to lose half of my face due to facial paralysis (temporary or permanent), I will be totally permanently deaf in the affected ear, and they will cut my left balance nerve during the 8-12 hour surgery. Therefore, I will have to train like crazy so that the other side of my brain will learn how to compensate balance for both sides. I may appear drunk at first, but I will do extensive rehab to be able to walk straight. Right now, is a waiting game again. By the phone, everyday, to get the surgery date. I really hope it is soon. The best Christmas gift I could get would be to get this lump of coal out of my head.
As I sit here and wait, half of my face is numb (it feels like I just left the dentist). Half of my tongue is numb and tasteless as well. I have poor hearing on one side, a constant ringing in my ear, my balance is so awful that I look like I am drunk on the daily. But please know that isn’t true, mainly because I can’t drink without crying myself to sleep. The headaches I experience are severe and some days, nothing will take them away. I walk around in public and I feel like I am in such a mental fog. Blurry vision comes and goes and some days its really hard to stay awake. However, I do have good days. And recently, a lot more good days than bad. This is how I know that I will overcome this. This is how I know that my “new normal” won’t be so bad. One day at a time, and counting everything I am grateful for along the way.