Late April seems like yesterday. Nine months ago we were sitting in a surgery prep room waiting for surgery. I still get emotional about how surreal and scared we were about not knowing what the outcome would be, yet at the same time holding onto hope. It is a strange combination of feelings, but those feelings have provided so much strength. Today, I am no longer a brain tumor patient, and I'm excited to share some positive updates!
December held a couple of Mayo days that included several tests and appointments. The ultimate appointment was with my neurosurgeon, where we went over progress and shared some celebrations. My brain lobes have 100% reshaped and moved back to where they are supposed to be. In addition my brain stem shifted back into place as well, something they weren't sure would happen. This has everything to do with reasons for my body to be feeling more confident. AND... no tumor regrowth! I look back to even 3 months ago, realize how much I still was just not feeling 100% overall. We left that day with smiles and an overwhelming feeling of happiness and relief. We will return in 7 months for more follow up. Here are the brain scans before surgery vs. 8 months out:
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| Before surgery: The white area (not eyes) is the tumor, squishing those lobes at the back of the skull |
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| 8 months Post Op: The body is so incredible, look how they have reshaped themselves! |
My continued challenges remain fairly unchanged. Full fascial numbness on the left side (eye, nose, mouth, internal ear and face), some hearing loss, jaw misalignment, muscle atrophy in temple and under cheek bone, ear drainage due to jaw issues, double vision, no use of left mandible (jaw muscle). After an appointment with a Maxilliofascial surgeon, I now have some answers to the issues. Two of the main nerves that supply a motor to my fascial muscles on the left are paralyzed because of nerve damage from the surgery. As a result, it has created all the things. This explains why chewing gets tiring and my jaw shifts to the left so my bite doesn't align. An invasive surgery is not something I will be pursuing for this one. I have had a couple of eye injuries because I cannot feel it, so I need to continue using drops and just be careful. I was told that vision would improve the most between 4-6 months, and it did! I still have some blurriness, and double vision with all my peripherals. My best vision is in the top left, so I often find myself tilting my head to see clearly without double images. I continue to wear my image blocking glasses periodically to give my other eye rest and straighten up my neck, and I continue to patch while driving. Nerve pain continues to assault, however we are still adjusting medication that has been helping. There really is nothing to compare chronic nerve pain to...it's not a head ache or like a body ache. They are sharp, and often intense, but are quick to release. There are more great days, and a handful of not so great days with nerve issues. Andy will always say "you over did it today", which can also be true. Full recovery could be up to 2 years, and I've come to accept the possibility that it may remain my new normal, and I continue to pray for nerve regrowth. My surgeon said more than once "I'm so glad you are alive". That got emotional, and reminds me that all these things are minimal compared to alternatives.
Recently, I connected with someone who was also diagnosed with a brain tumor. Although our tumors themselves are very different, the ability to connect with someone who has a shared experience is unexplainable. The depth of emotional and physical understanding of one another was unmatched, and our families felt connected. No matter what you are experiencing, whether physically or emotionally, I cannot say enough how important this kind of connection can benefit healing.
Today, I am overall feeling well. I am enjoying life like I was prior to symptoms and diagnosis. While I may live with physical reminders and annoyances of my experience for the rest of my life, I have learned to enjoy every moment. Life is so fragile and precious, and I am so grateful to be here. I have been determined to use my experiences and this continued recovery journey as a source of strength to thrive, emotionally feel better and slow life down. The improvement of physical strength and balance has also provided so much more confidence in the small daily functions that I had previously taken for granted. Recovering from a major brain/skull surgery has not been easy all the time, but the celebrations along the way have been very rewarding and prideful. Sharing my journey has allowed me to reflect, cope and locate hope and strength. Over the course of this journey, I have been touched by so many people who have quietly stepped in to support myself and our family. It always seems to be appropriate, unobtrusive, timely and my gratefulness for this is infinite. At first it was hard to fully accept the variety of support, but acceptance of this statement "I've got this, you've got us" took over, filled my heart and raised us up with HOPE.
