6.20.2013

June 4th

It never occurred to me to measure or determine the worst day of my life until about 9pm on June 4th. I sat next to my husband as he woke up after having a craniotomy. Seeing him writhe in pain while the blood oozed from the 29 staples that held his face to his scalp did something to my insides I had never felt before. The ache of not being able to fix it was beyond words.  The nurses were wonderful at quickly administering what he needed each time he puked up blood and moaned, "oh my head' in a sort of whisper you hear in a horror movie when the final character is killed off with a gruesomely slow death. I felt like I was watching him die of pain. It was like chunky layers of ash filled my insides and my mind cried angry exclamation marks in a marvelously useless manner. I had never before felt so infinitely helpless, sad and hurt as I watched someone I love so deeply suffer. "This is so horrible, mom..." I texted my mother while I curled up on a chair in a dark corner of the hospital room once he dozed off in a medical haze of sleep. She felt the pain of me not being able to help him through the tiny letters I sent to her phone. Her sweet reply was like a digital hug; it warmed me the way only a mother could.

Through the night I sat next to his bed in a chair and adjusted his ice bag each time he moved his head. When I knew he was comfy, I closed my eyes, pulled up my blanket, and prayed his brain and vision would pleasepleaseplease be okay. A number of things can go wrong during and after surgery- we knew the list well and understood the tumors needed to come out regardless. Not removing them could cause hydrocephalus (water on the brain).

While he was in recovery the doctors had informed us one tumor was stuck like Velcro to his optic nerve. They hoped his vision would not be damaged as a result of their efforts. That tumor was cut away, but some remained attached and will need radiation once he heals 3 months post-op. Another tumor remains that was tucked away in optic nerves, but a third tumor came out easily. These were the nodules left after his former surgery which removed the 4 cm tumor mass. None are cancerous.

We learned Mike's face anatomy is different than most and to take away the parts of his skull they planned to remove to access his tumors, they had to cut away some facial (chewing) muscle. It may not work the same once he heals. He is eating fine, but we are eager to see his swelling go down around his eye to watch for any impact to facial symmetry and movement. Also, his sinus went over into his eyebrow area more than most peoples' and some special repair was needed there as well.

Right now as I type this he is next to me in bed with the staples removed and a faint scar line where his skin was cut open. This is the first day since surgery where I sense more of the 'old' Mike peeking through those dark clouds of healing. He is becoming more himself, albeit some swelling is still present and his vision isn't where we would prefer. I feel like the past two weeks we lived slowly hour by hour, but my memory looks back on it like we took a ride on Eurostar; much is blurry.

The outpouring of kindness has made each day sweeter and humbled us greatly. While I prefer to be on the other side of helping, I admit our family has been supported well beyond my dreams with prayers, verbal support, meals, treats, visitors, watching of our kids, fasting, and kind thoughts. The team of doctors has proven this to be the best possible location to live while Mike endures treatment, which to me is a miracle considering this tumor deal has been brewing in his brain for years (most likely began when we lived in NY). People travel from all over the world to get access to the kind of neurosurgery treatment he is getting. While brain tumors are not an ideal situation to say the least, it's incredible to take a moment to appreciate the little miracles we have been granted along this ongoing journey. Thank you for reading and being part of it.
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