So I have climbed the hardest parts of this time of trial, now it is time to embrace what is ahead and enjoy the freedoms the surgery has provided me. Although the journey continues, I get to enjoy bits of freedom of relief and reflection. I often think back to the period of time where we had to wait for any kind of answer, and how scary and painful that was. I continue to rejoice in the fact that an operation from a really skilled doctor saved my life, and promised a future full of adventure, time and memories with my babes, friends and family, and happiness. The physical and emotional ride since surgery has been challenging, positive and rewarding all at the same time. Even with the current challenges, I must continue finding joy in so many things. Some of my challenges include facing daily numbness and vision issues, balance, additional surgery, work/insurance and any other things that may come our way. I must take it one day at a time, because “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” ~Matthew 6:34. I am alive. I function. I am moving. I am here.
THE UPDATES
NEW MRI
We spent two full days at Mayo this week, full of tests and follow ups with doctors. My neurosurgeon was very impressed with the progress. We are now just under two months out, and he was thinking it was 3 months already. "You don't even look like you had surgery", was such a compliment. The current MRI scan shows some amazing, positive change. My brain has settled back into place, and there is no more crowding! Additionally, there are no signs of the tumor. The brain is such an incredible thing, right!? It is so hard to imagine all the changes that have taken place in the last 8 weeks and continue to evolve inside my head. I will return in six months for another MRI check in, and to make sure there is no regrowth and everything is turning in a positive way. There is a chance that the tumor could try and grow back. We are told that if that were to happen (which it isn't!), it would be approached with radiation. My nerves are all in place, and we pray for continued healing and regeneration to bring back feeling for me.
VISION
My physical appearance and functionality are really great, however there continues to be challenges inside my head affecting some functions and the way I feel. I continue to nap daily if I can fit it in, which helps with the fatigue, battle pin point head aches, and see very strangely. Vision is the biggest challenge for me, and double vision is the biggest culprit. Often, people who have double vision can get prism glasses to help with the impairment. I do not qualify for this, because the second image I see of everything is offset at an angle. It is so weird. I have to wear non prescription glasses, with the left side clear taped to reduce the double vision so that I can function. If I remove the glasses, I can't walk, balance or focus - and it makes me seem as though I am influenced. These really dorky glasses will be my best friend for the next year, when we evaluate if the vision has improved at all. A year is a pretty good indication of whether or not the body will take care of healing this, and there is a 50% chance of that. If vision hasn't improved at that point, a surgery on the muscles around the eye may be a possibility. As all the nerves continue to heal, there are nerves that affect the muscles around the eye which will hopefully help me. I never realized how much our vision can impact so many daily functions from fatigue, independence with driving, dizziness, and overall cognitive function. Not being able to drive has stolen so much freedom, independence and contribution to getting my kids places. However, I received the green light to drive with a patched eye, watch out MN roads! I have been warned that it will be like learning to drive again, and I have a loss of depth perception switching to one functioning eye. I anticipate some practicing with short trips in parking lots, taking me back to age 15.
FACIAL NUMBNESS
The numbness is also very present in the left side of my face, minus the back of my left jaw. Literally draw a line down the center of my face, and I cannot feel most of the left side. This has posed challenges, especially with my left eye. I happened to scratch the crap out of my cornea one night in my sleep; this would typically be very painful, however I didn't feel a thing. We have treated that with antibiotics to prevent infection, and have been monitoring the healing. I have to use lubricating drops 4-6 times a day for the next year. The injury currently exists as a scar, which makes things more blurry in addition to the double vision.
The numbness also affects my mouth, where I find myself drooling sometimes (gross!), and a challenge to eat. I will sometimes be eating, and not realize that there is food hanging out in the left side of my mouth waiting to choke me. When I smile, it is a weird sensation....almost like lifting up a rock on that side of my face. Speech has improved, however I still struggle a little bit with certain sounds. This also has a 50% chance of healing, or a permanent impairment that my body will adjust to. The incision has healed beautifully. Most all of the scabbing has fallen off, and now hair is just trying to regrow along that path.
BALANCE
Balance is something I continually work on through physical therapy. There were definitely challenges prior to surgery, so the addition of brain surgery has really impacted that. With more brain training and practice, I hope to see this improve like so many other things have shown physical improvement.
COMING OUT STRONGER
Think back to the moments where we had a plan, but hadn't started the journey or the climb, and how far we all have come. The hardest part of this climb for me was the physical challenges in the last couple of months, and the best part of the climb has been experiencing the support, experiencing emotional challenges and love with and from all of you. Thank you for laying your hands on all of us throughout this time of trial. It has been a roller coaster of emotions and physical challenges, which are all a part of our journey together. Currently, I am descending from the biggest climb. I embrace the reality that there may be other ups and downs ahead and accept that any challenge comes with freedom on the descend. Last week, my mom ran into challenges with a ruptured appendix, so life will continue to throw punches. We are human after all, and unplanned hardships come with life. How we deal with hardships is a test of our resiliency and how quickly we recover from trauma. I am so grateful for my family for transporting me everywhere and taking our kids. Family, friends, faith and HOPE have gotten us through this. I am even planning a bad ass tattoo that symbolizes hope :) This is my time to heal, and put other things on the waiting list. Going through this ordeal has strengthened my inner self, physical self and even relationships. God challenges us with things to help make us stronger....I am thankful for this.
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| Proud of the Crew |
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| Physical therapy challenging balance |
