It was the morning of February 14th, 2017 that my family stood at the end of the hallway and watched me slowly disappear on a stretcher – not knowing when they would be able to see me next. I would be wheeled down the hall for a couple of minutes with a nurse wearing a blue cap to the operating room that was waiting for me.
The first thing I saw was a screen that displayed images from my MRI scan. I then took note of the nurses diligently preparing on one end of the room while the anaesthesiologist waited for me at the head of the bed. In my gown that was open in the back, I was transferred onto the operating table which would become my home for the next 10 hours.
It was just after 7 am at this point and I didn’t know where or who to look at. Is this a dream? I started counting the dots on the roof panels and got to 23 before the neurosurgeon interrupted. “Were going to start talking about you now”. As a neonatal ICU nurse, I am often the one giving report on patients – not the subject of it. It was all too weird to handle.
This is Meagan Michelle Doumont. She is a 30 year old with a left-sided Vestibular Schwannoma and we will be performing a retro-sigmoid craniotomy for removal…..
The courage I had mustered up that morning started to fade as quickly as the anesthetic kicked in. And when they asked me where I want my mind to go for the next few hours, my new found vulnerability couldn’t help but blurt out “I’m scared”.
This was the last thing I would remember before it all began.
When I woke up dazed and oh so confused, it was nearly 7 pm. How is that possible? Did the whole day go by? My thoughts would be confirmed when I overheard the nurses say “Get on the phone with neuro ICU. She was in the OR ALL day long”.
I was surrounded by health care professionals who would be asking me a series of questions every few minutes. I was forced to move my body and my face just as frequent. Rest is not an option when your cognition and physical abilities are being tested – I guess brain surgery really is that risky. I had IVs all up my arm and even had a fancy arterial line – i’ve only ever seen those on really sick babies. I had beeping machines all around me, inflatable cuffs on my legs and a dreaded foley catheter. The funny thing? I was way too out of it to be bothered by any of this.
I was shivering like crazy – my teeth were shattering and my body would not stop shaking. I felt as though I had just downed a bottle of liquor and the ‘drunken spins’ were taking over. I was groggy, out of control and in my mind, something terrible had gone wrong. I was much too drugged up to express my fears – so I just laid there in my vulnerable state waiting for some answers. I felt like I was hit by a semi-truck again but this time, I didn’t have the car to protect me. What was supposed to be a 90 minute stay in the recovery room turned into 6 hours. All I wanted to do was see my family – all they wanted to do was see me.
When I finally came to it, that’s exactly what I asked for. I don’t need to say it twice, family is the ONLY thing in this life that matters. When they arrived at my bedside with tears rolling down their cheek, I could only muster up enough energy to say “I love you. Please don’t talk and just hold my hand”. And they did just that, after telling me that the surgery was long but successful and that I was officially tumor free. My mom told me that my face lit up and for a moment, my eyes were wide open with joy. I then proceeded to listen to my physical self and drift away to receive the much needed rest I longed for.
As the night went on I was eventually transferred to neuro ICU. After an intricate brain surgery, there is nothing more comforting than a quiet, low to no stimulation unit with nurses who are on top of your pain and nausea. Both of my nurses were amazing to me and I will never forget them because of that. With IV meds every two hours for pain and nausea meds, antibiotics and steroids in between, I was finally comfortable. And by morning, I would have a red moon face from the steroids and begin to take note of my new found deficits.
I am now completely deaf in one ear. This is something I was expecting as a result of the surgery and was never really bothered by it until it actually happened. I have always assumed a deaf ear to be quiet. But it’s actually quite opposite. There is a constant loud ringing and sounds like there is an on off wind storm brewing in there. I’m hoping that this noise will fade in time. But right now, it is a major distraction and when mixed with some background noise, and I can’t even hear what the person next to me is saying. A new found deficit that I will have to learn to adapt to – but a small price to pay considering.
One of my greatest fears about this surgery was the risk of facial paralysis. This tumor grows up against the facial nerve and can cause temporary or permanent damage to many who undergo surgical removal. While my perception of the importance of this has changed – I am grateful to be alive, I was blessed with complete tumor removal and no facial nerve damage. Also, just two days following my surgery – I have regained all of my sensation in my face and mouth that I had lost for months prior to surgery.
I did however, lose half of my balance. Let me tell you, you do not realize the importance of your vestibular system until you don’t have it any more. The first time I attempted to walk, it took my sister and my nurse basically holding me up and guiding me to put one foot in front of the other. I did it with their support with tears running down my face. I am 30 years old and felt 90 and the nausea I felt was almost unbearable – a symptom I continue to struggle with to this day. It is, however, getting better.
I would proceed to spend the next 5 days on a neurological unit with specialized staff. I was up with physiotherapy everyday and making progress every time. I was surrounded by love, visitors, flowers, balloons, teddy bears and an incredible view. I was blessed with the news that I do not have any permanent cerebellum damage (thank God for that) – and although I will not regain my hearing, my brain will learn to compensate balance and my vestibular system will likely improve up to 95% in the coming weeks or months.
I was discharged on a Saturday and was happy to be in the comfort of home. But it wouldn’t be long until the entire world was spinning and even upside down at times. My body couldn’t handle it any more and it lead to (sorry for the information overload) but non-stop vomiting. I ended up back in emergency and sent home later with some stronger anti-nausea meds. This minor set back left me feeling weak and lethargic. I truly felt like an infant – but my mom took amazing care of me. I don’t know what I would have done without her.
As of now, I am home and learning to adapt to my new normal. Each day I try to push myself a little further. I have successfully managed to know the where abouts of every wall, every counter and every chair so that I have something to grab onto while maneuvering around. I am not sad about this challenge with mobility any more – in fact I find it kind of funny. I have even bragged a little to my family “look I can walk on my own” – just for them to come running to grab me or to tell me I shouldn’t be. However, in time I should be able to walk independently just fine.
Although I have a long road of physical and emotional healing, I feel truly blessed. A friend who went through something similar told me not to focus on what the tumor took away – rather, what the tumor gave me. And that’s exactly what I am doing.
The tumor has given me a second chance at life with a whole new perspective. My values have changed, my ability to connect with others have changed. I am now more open, authentic and vulnerable than ever. I have a new found confidence that no professional accomplishment or physical attribute can give me. I am strong because I was weak and overcame sorrow that I never thought I would. And to be honest, many have asked me how on earth I could possibly consider myself blessed considering I just went through hell – and I continue to answer with this:
I am blessed because the tumor was found. I am blessed because it was fully removed. I am blessed to have loved ones who understand my needs fully even when I don’t have the strength to tell them. I am blessed to have faith in knowing that something very positive will come out of this – it will become my new purpose in life. At this point, I don’t know what the future holds – i’m not supposed to. And for the first time in my life, uncertainty excites me rather than stresses me.
My message to you – if you are going through hell, keep going. Even if all you do today is breathe, tomorrow is another day that will be closer to the end of your storm. Be gentle with yourself and accept the help that is offered.
Let the healing journey continue….bless you all and thank you for your unconditional love.