No More Surgeries!
As I finish out this very unexpected, difficult and wild year of 2018, I am humbled by my circumstances and by the beautiful village I am privileged to be loved by. I needed to take a moment to reflect on 2018 and find the New of 2019. (even if no one reads it) :)
Things I never thought I do in my lifetime....I did in 2018...a few times!
Of all the adventures I could fathom....Craniotomy was not on the list. I never thought I could encounter such a journey as this.
What I am grateful for in 2018...
Modern Medicine! I am the recipient of amazing surgeons who gave me their "A" game plus some. I don't know how I was given such a gift as this, but I will be forever grateful.
Surgeons willing to take risks to give me the best possible quality of life.
My tumor didn't win!A husband who had to climb his own mountains of fear along side of me. His journey while I healed is one not for the faint of heart. He knew when to share details with me, when to be strong when I couldn't, when to tell me I was beautiful when I wasn't. He is my greatest blessing.
Daughters who are as strong as I knew they were. They held me when I needed, cried when they needed and loved bigger than I think they knew they could. They are brave and strong. They faced fear head on...twice!
My village. The love and support I received was life giving and I honestly don't know if I could have made it through without them. My village was not what I expected and I am forever changed by them.
This journey. It has changed me in ways only these circumstances could. I could not conquer fears without something I was absolutely terrified of. Both times I was rolled away from my family and into the stark, bright, sterile operating room placing my life in the hands of people I barely knew....that moment before falling asleep was the most terrifying moment I've known...twice. Life will never look the same again.
Recovery. It's been a long year of tripping, falling, blindness, double vision, black eyes, numb skull, hair loss, hair regrowth, hair loss again, side effects, nerve pain, nerve healing....and hope. I admire those who live with chronic pain and those who view the world by touch and those who help them feel the world around them. I have been through a lot but it could have gone such a different way. I feel blessed (and sometimes a little guilty) for such a wonderful outcome in recovery.
What I look forward to in 2019...
No more craniotomies or titanium. I'm not sure if there is a scenario that could convince me to have another one. I think I will live with whatever my outcome is and find life in it.
Be Whole. Getting healthy. Deeply healthy. You can't have a year like this (really 2 years from the onset) and not have trauma. Just because you face fear and get to the other side, doesn't mean you're ok. It means you survived. This year I want to be ok. I want to be alive each day. I plan to recover mind, body and soul in 2019.
Dream. Trauma is paralyzing. I don't want to be paralyzed. I want to dream again and let myself chase the future. When you don't know what's around the corner, its easy to live so much in the moment that you don't know what you want anymore...except to make it through the moment.
Be as brave with our future as I have been with my surgeries. I'm excited to see what great things are ahead. I have a beautiful friend, Jacquie, who keeps telling me " You are a miracle! God has big plans for you!" I can't tell you how powerful her words have been in the very dark moments of fear. So I want to cling to the "future" of her statement and be brave enough to not be stuck.
I want to find joy in the simple things like running, eating, laughing, resting. I am too easily bogged down by stress and details. I want to find joy in everything I do...even when those things are hard things.
I want to play. Camp. Walk a beach. Hikes with my puppy. Turn work off so I can turn play on....I'm so terrible at this! As a chronic problem solver, I don't shut down one thing and move into the next. I take everything with me.
See my youngest daughter graduate and follow her dreams. I get to do this! She's got big dreams and I know she can do whatever she puts her heart to.
Believe I am valuable. I let many things define how I see myself and when I listen to incorrect story lines of myself, it creates such conflict for my soul and mental health. I want to listen to the voices and people that are worth listening to and let the others fly away with the wind they flew in on. I have gifts, talents, strengths and joys that I want to focus on this year. Like Jacquie said...God has big plans for me.
Adventure with Casey. There just isn't anything that matters more to me than time with him. We've had an adventure this year, but I want to get outside and see new things, meet new people and create new memories together. This is life for me.
Pay off my medical bills. This is the part you can't let decide your treatment, but post treatment it is all consuming. Your prayers for our debtors to work with us in payment options would be greatly appreciated. We hope to refinance our home in March to help pay them off, but many have not been interested in waiting for us to make that happen. We just need a little grace and patience as we navigate this.
As for my health and recovery today....
I will have my post-op visit with Dr Carlson on Wednesday morning, Jan 2nd. I know he did amazing work in both surgeries but I've been told by Dr Michels that the work he did to rebuild my ocular cone with titanium is amazing. He said you can hardly see a difference between my left and right eye in the post-op CT. I have great vision, but I am healing so we know this part will change over the weeks.
For those who do not know what my second surgery was for, here is a little update...
My left eye started pulsating to the rhythm of my heart rate. As I started coaching our 5k running groups I found it harder and harder to run with everything moving. I began covering my eye to keep the motion out of sight. During the first surgery, the bone above my eye (between my eye and my brain) was removed to access my eye for the tumor removal. 5 months post op, I became more restricted do to this eye pulsing. It wasn't something my doctors felt my brain would learn and adjust to so I was given the option to have Dr Carlson (neurosurgeon) perform a second craniotomy to build a titanium structure between my eye and my brain.
They worked very fast to get me in before the end of the year so that I didn't have a surgery in 2019. So far, all of my surgeries have been in a different year....3 different annual deductibles to be met and paid. I knew if I couldn't do it in 2018, I couldn't do it. AND....I was still in recovery from the first surgery so it made sense to continue recovery so that I could move on with my life. They not only fit me in, but I think Dr Carlson was going to have fun with this challenge. But this was my choice to make. It was a quality of life issue, not a tumor removal. Although it had great effect on my daily life (driving, walking, running, etc), it was up to me if I wanted to take the risk of the first miracle I had received. After much deliberation....I decided that quality of life was important at nearly 45 years old. I want to run and live as fully as I can and I had the best doctors to make this happen. As of 14 days post-op of my second craniotomy....I think we did the right thing! Time will tell for sure.
As YOU enter 2019....
Hug those you love.
Don't wait for the right moment to tell someone they are brilliant or talented or they bring you joy...just say it! Words are powerful and life giving.
Choose your words carefully...don't let your compliments be for you. Make sure that you are sincere and the focus is not about what you get out of it....you will get something though! I promise you that!
The cracks and wounds in your life can be healed. Don't wait to get help....get whole this year.
People first. Always. The rest is just stuff.
Adventure! Make a new memory that redefines how you view the world. It doesn't have to be grand...just new!