I originally created this blog to keep everyone updated, and questions answered. I have found that the writing has also served me in other ways too. Part of "going through", is updating everyone. I still get several questions that people are curious about, and here are some FAQ's:
Will you have to shave your head?
You probably thought this would be my new hair cut:
Well, I get to keep my hair! In the past, yes patients would shave their heads. Not to be graphic, but they will shave the long path from the top/back of my ear, back around towards the back side, up towards my hair part, and forward - a big "J". Pretty much my entire left side. When everything is put back together, my existing hair will cover the sutures. I just might have to switch my part to the other side.
What will recovery be like?
I will start climbing the hill in intensive care for some time (a day or two), before I'm moved to a regular hospital room for a few more days. I wish I had a crystal ball to know the answer to this. It is obviously a major surgery, and will require a major recovery.
How do you feel?
It is hard find balance in life (work, life, play) the way it is, but when physical balance is off, it is even more of a struggle. The stress has shifted to different things, but I do feel pretty balanced figuratively speaking (just not physically). At physical therapy, I was told that I had a vestibular system of an elderly person. I'm so glad that I didn't go down the balance clinic route they recommended, and did my own investigating. I just had the gut feeling that something was not right - I think it was the same feeling that the MRI technician had when he had that look on his face (but couldn't say anything) after imaging.
I have also noticed muscle weakness. When working out, it is like there is a force working against me. No matter how much I push myself, the exhaustion sets in soon after I start. I also noticed that my left leg gets pissy when it gets tired. It is like it has a mind of its own - not lifting all the way, and throwing a bit of a tantrum if it doesn't want to do something. The other day, I was picking Vera up from school with our dog Poppy in the car. When the door opened, she saw another dog and bolted out the car, dodging traffic in the school pick up line and the busy parking lot. I got out to chase her and my legs wouldn't run no matter what. I found myself kind of limping. That was a moment that I really noticed the symptoms of the tumor, and how much pressure it is putting on my brainstem. I never did like running anyway:) Luckily, Poppy made it back to the car. A dead dog was not what we needed right now, right!?
I feel like I have a buzz (minus the brain fog) most of the time except for sitting. It really is a feeling that I can't get used to. Simply put, it feels weird. I have noticed that my balance is much more compromised recently and my muscle weakness is stronger. This could be because I am ultra aware of the symptoms, or because they are getting worse - or both. Regardless, I have a sense of urgency. Now, I really want the operation, and look forward to feeling "normal".
Are you sleeping?
I fall asleep very well, and when 3/4:00a.m. rolls around, I'm up. The constant stream of thoughts start to trickle in, and offers me no signs of drying up (I've been sneaking in a nap when I can to make up for lost sleep). One night we had a little munchkin crawl into bed with us because of bad dreams. Early that morning she woke up with me and noticed I was crying. Her sweet little head hugged my chest "you are going to be okay Mommy". I find peace and strength in these moments. I AM going to be okay. The kids are in the middle of this mess, and that is what makes it so hard for me. We are giving them what they need, and they are giving me what I need. It is amazing how much strength young ones have to offer.
Can't Go around
I am usually the one showing up with a meal - not on the receiving end. Thank you for this, and thank you for showing me that it's okay to allow others to put their hands on me when I need it. This will serve me well. This journey is unavoidable, and I must go through it. I do have everything I need for this one - my family, my friends, my faith and HOPE. As I write this on Easter Sunday, I connect this day to something pastor Dan told me, "Rachel, you have your own little resurrection journey to go through". There is no way around this one, I wish I could jump over it, but I must go through. I probably won't post again until right before my surgery with anything new, and then it will be someone else's job to keep this blog updated.
Peace.
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