Last Friday Paul and I made the drive down to Newport Beach at the crack of dawn. I was greeted by the nurses who know me all too well by now and led to my room. At Hoag Hospital Gamma Knife is performed in a separate building called the Advanced Technology Center. The halo placement, MRI's, and treatment are all done in one small building. It is comforting to be kept so close to my husband throughout the entire ordeal, without even having to take a trip to the huge, cold, main hospital.
Being an old hat at this entire thing I came prepared with no jewelry or metal on, and just changed out my sweatshirt for a scrub top to wear over my comfy sweats and monkey slippers. Within an hour the nurse had all my vitals taken and expertly placed an IV, and then suddenly the room was filled with people ready to get started. I felt the familiar panic rise in my throat at the thought of being put to sleep and having a frame hand drilled into my skull within the next 10 minutes. Before I was even directed to count I closed my eyes and directed my consciousness deep within me to a place only I can visit. A vast beach stretched before me, blue waves crashed down on powdery white sand warm from a light that just seemed to emanate from the horizon. The water barely lapped at my toes and the warmth seemed to seep into my pores, filling me with light until suddenly I felt a hot hand on my arm. I took a breath and opened my eyes to see everything framed by the halo around my head. Paul was at my side, as always, and I told him I felt like Magneto.
Slowly I came back to my surroundings and the heaviness of the frame set in. My head ached but I knew there was nothing to be done about it so I just tried to relax. I waited about an hour to be taken back for Gamma Knife, and the doctors told me I would be in the machine for 80 minutes. Again, the panic rose like bile in my throat as the doctors circled around me making adjustments, finally snapping on another piece of the halo that rocked my skull with several deep thunks. (thunk is a word now, screw you spell check.) They guided me onto the bed that lays in front of the Gamma Knife machine and laid me back until my head frame snapped into place. I took a deep breath and gave the worried doctors a reassuring smile. They knew that once the machine pulled me inside of it I would be deaf, blind and unable to move at all for the next 80 minutes, with not even a clock in sight to provide structure to the pain. I knew if I allowed the fear to set in I would cry, but there would be no escape and so instead I resigned myself to prayer.
The bed slid back into the dome of the machine and pulled my head at an odd angle until I was basically hanging by the screws and surrounded by darkness. I thanked the Goddess for the technology available, for the doctors I am blessed to be treated by, for my family who was supporting me, for my children who were waiting for me. I thanked Goddess for everything I could think of until I could not ignore the pain any longer and finally my eyes flew open to see nothing by layers of metal, and beyond only darkness. Had it been 15 minutes or 30? Was I almost done or had they even started? What if there was an earthquake and the machine ripped my skull apart? I had to stop, I knew sleep would allude me and instead brought my mind back to my beach. Within moments I walked along its sandy shore, stretching unendingly to a place I could never reach. Wisps of clouds in every color swirled far out over the water and I inhaled the crisp air wondering how long I could stay. I was not asleep, I simply chose to exist on my beach and not in that machine. I could feel the pain but I chose not to experience it. I was still afraid and worked actively to subdue my panic, knowing that just one rogue wave could crash my entire beach, drowning me in an unnecessary tsunami of fear.
Suddenly the horizon shifted and I realized I was moving, my eyes opened and the doctors surrounded me, releasing the halo from the Gamma Knife and offering a hand to help me sit up. I followed a nurse back to my room in a daze. I saw Paul and my Dad waiting with a casual ease that comes only from having NF2 in your family for the last 40 years. It wasn't like I had actual brain surgery, this was nothing to us. I tried to muster smiles for their teasing but really just wanted to have the halo taken off as quickly as possible. Time ticked by and I kept lapsing out of consciousness while wide awake. My mind was trying to escape my head. The nurses came in with empathetic hand squeezes and produced a power drill and rolls of gauze. Everyone helped me sit straight up and as the drill settled into the first screw my mind flew free and settled somewhere deep inside of me, where not even a beach of light could exist. There was only darkness and a keen awareness of a detached reality surrounding me. Warm blood trickled down my skull and as the 4th screw was removed the halo was lifted and gauze was quickly wrapped around my head. I opened my eyes and saw my Dad and Paul looking at me with bemused smiles. My Dad gave me hugs and left to go about his day. Paul went back to playing on his phone as we waited to be released. I laid back and pulled the scratchy hospital blanket up to my chin. I felt like the halo was still on, like I had never had it on, like I was still at my first Gamma Knife treatment, and already at my next. I felt like I could live another 10 years and felt like I was already dying, and already gone.
Before leaving we had a final conversation with Dr. Duma who told us he treated all 3 tumors involved in the cluster of tumors we were targeting. There was also a large tumor at the top of my skull between the hemispheres of my brain stretching straight back that was treated as much as possible. With all of the radiation so close to the surface of my skull I was warned I may lose hair. I remember my Mom's bald spots and just nodded in understanding. I smiled like I always do and we left. I could see Newport Beach as we drove out of the hospital parking lot but I turned away from it, it was time to head home.
I woke up the next morning expecting pain, and finding none. My head was sore like I had drank too much cheap wine, but within 2 days I was able to run a 26mn 5K on the treadmill. I just keep moving forward and forcing my body to follow along for the ride. I've had a few headaches, and every morning I comb through my hair checking for bald spots that have yet to form, but most of the time I just do what is expected of me, because there is nothing else to be done.