Experiencing Gamma Knife

It has been a week since I had Gamma Knife at Hoag Hospital for the 5th time on the 8th, 9th, and 10th brain tumors to be treated. You probably assume I have yet to post because I was on my couch recuperating, but you my friend would be incorrect. I have been out running, doing pilates, shopping and playing with my kids!

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.

Bring It On

This past weekend was the annual Surf City Marathon in beautiful Huntington Beach, and as most of you know I had been training for 2 months to break 2 hours in the half-marathon. Over the last couple of weeks I had several set backs, all tumor related and absolutely annoying. A spine tumor made it difficult for me to breath, and when I ran at the speed necessary to reach my goal time my ribs would cramp under painfully until I was forced to stumble to a stop on the side of the road, clutching my side and sucking in air. I realized breaking 2 hours may not be possible right now, but I had to at least do my best. Surf City is not an official NF Endurance Team event, but several of my friends on the team have formed the unofficial NFET California Dreamin' Team and that was all of the motivation I needed to put on my running shoes and paint that course yellow!

Paul and I left the kids with a friend and showed up in Huntington Beach for the expo Saturday. We met up with friends, grabbed our bibs and timing chips, and escaped for a margarita at Fred's Cantina. Later that night my friend John was awesome enough to host a dinner at his home, 8 of us crowded around his table for pasta and stories. As usual our collective health statuses left much to be desired, but morale was high and the wine flowed freely. By the time we all hugged good night I couldn't wait for race morning.

Paul, John and I actually went to the Santa Ana Artwalk for a bit after dinner to visit a gallery showing the work of my friend Tyoni who does my tattoos. Totally random bit of information, but it was fun and her art is beautiful. I just wanted to rip it off the wall and transfer it to my skin. After dropping John back off at home, Paul and I crashed his friend Fred's couch and caught a bit of sleep.

Before we knew it it was 6am, and I popped right off that couch ready to attack the course! I yanked on my Bad Ass running socks, comfy purple running shoes, my fave black running shorts, my Nike Sports band, my new running hat that says "Some girls chase boys, I pass them," a ton of Glide, and finally my bright yellow NF Endurance Team singlet. I cleaned up and smeared on sunblock, by 6:10 I told Paul I was ready to rock! We drove down to the parking lot and caught a shuttle right to the race. 20,000 people milled about, some stretching, others doing quick sprints to warm up. I shook my legs out and took a deep breath. Suddenly Paul noticed people moving and told me I better get running. I planted a big sloppy kiss right on his mouth, and took off running toward the start line.

Most of these major race events line everyone up in waves by declared goal finish time. I have done my time being in the back 2 or 3 waves, but not this race. As I jogged to my starting spot I passed thousands of runners crowding around pacing signs. 3:00, 2:45, 2:30... I stretched my neck and searched for the big 2:00 pacing group, but the line had already started moving and before I could get left behind I jumped in with the 2:04 pacing group. The leader was a young girl wearing a horrible blue plaid running skirt. As we crossed the start line I turned my sportsband on and set it to the chronograph. I breathed in deeply through my nose and forcefully out of my mouth and focused on the road ahead of me.

The first mile of a race is always interesting. There are always a few jerks who just refuse to stick to their wave group and walk right smack in the middle of the course, causing dangerous traffic for all of the people running at the correct pace. There are always people who go running by with the oddest running styles, one hand sticking straight out, feet dragging or even moving in circles in front of them like a cartoon character. As soon as you see them, they pass you and are gone. Surf City runs along PCH and the ocean breeze urged me on as I hit my stride. I felt a slight twitch in my ribs and went into denial mode, as I passed the 1 mile mark I noted 10 minutes had gone by already. I was 30 seconds behind my 9:30 pace, but the first mile is always a warm up so I was not concerned. As I set into a rhythm my rib cage flummoxed against my skin and I instinctively reached to hold the pain. I quickly realized that if I shoved 2 fingers right into the cramp and breathed deeply, the pain would recede until I could breathe normally again. Armed with this new tactic I picked up the pace, and every 2 or 3 minutes as the stitch came back I would roughly press it in with my fingers. Somehow I had become one of those crazy people running along with an elbow sticking out randomly. I could have cared less, as I neared the 2 mile mark a glance at my sportsband showed 19:30. I had run the second mile on pace and was feeling fabulous. I tried to relax and enjoy the scenery, forcing my mind to zone out rather then counting steps. At mile 3 the course took a sharp turn to the right as I knew it would, and until halfway through mile 5 it was all uphill. I love hills, I settled into a steady type of march and pushed onward. I thought back to the previous year when I had walked the half with my friend Giselle, I wasn't worried about my finishing time and knew it would be fun to complete the course together. I wished for a moment she was there again for the company, but knew that this year I had to run my own race. Suddenly the hill ended and I found myself at the top of a neighborhood looking out over a small inlet of water covered in a thick fog. It was beautiful, and as I turned downhill again I let myself fall forward with the incline, picking up my pace as the hill descended until I had again reached PCH and the course turned back to it's original direction. I was at mile 6 and almost at the one hour mark. I was about halfway there and starting to tire. I took my first drink of the race at the 6.5 mile hydration station, curving the little paper cup to my lips and sipping it down as it splashed all over me. I tossed the cup toward the massive pile of discarded cups and wiped my mouth with the back of my hand, all without breaking stride. I spotted the 2:04 pacing team again and fell in line with them. Every time I tried to pass them they ended up passing me again, until finally I resigned myself to their rhythm and fell in line. Its hard to describe miles 8-12 of a half marathon to anyone who has never done an endurance event. My adrenaline wore off, the caffeine ran out, and as excited as I was to run this race I was ready for it to be over. Instead of slowing down as my body wanted to, I knew I had to maintain or increase my pace for 5 or 6 more miles. At this point I started a meditative kind of thought process, urging myself forward and ignoring the pain that had settled over my entire body. Dull pain was expectable, and I welcomed it, knowing that pain is weakness leaving the body. Right around mile 10 the pain went from dull to sharp in 3 seconds flat. My left foot started to cramp and slowly curl in under itself. I tried to keep running for about 2 steps before I stumbled to the side and jammed my foot against a curb trying to force it to flatten back out from the painful ball it had hunched into. Within seconds I was loping along, trying to relax my foot and keep all of the tension in my core. I snatched the energy gel from my hydration belt... which is really the same thing as a fanny pack... I ripped the top off the package and squeezed the goo into my mouth, willing the electrolytes and potassium to relieve the cramp. I successfully ran another sub-10 minute mile and realized I was almost at the finish! At mile 12 my foot cramped horribly again, I again tried to ignore it but it curled under. I came to a halt on the curb, cursing like a sailor and shaking out my foot. I looked longingly down the course at the finish line, I couldn't make it out through all the fog but it still taunted me. I took a deep breath and just ran. I saw the pacing group and ran right past them. I couldn't even look at my time, I was too busy willing my feet to bounce off the road as hard as possible, propelling me forward against all probability. I was moving maybe around 9 minutes a mile but in my heart I was flying down that course. As the final stretch loomed into view spectators crowded the sidelines. Girls in hoola skirts waved signs that read "Nice Legs" and "You have stamina, CALL ME!" Children sat on their father's shoulders holding signs that said "RUN MOMMY RUN!" They all blurred into a line of color rushing past on either side as the big Finish Line banner came into view above my head and with a smashing step over the finish line I jammed my thumb into the stop button on my sportsband and looked down. 2:06. I sucked in air and accepted a medal and banana from volunteers. I stopped for the first time in over 2 hours and stretched deeply. For some reason I thought of the movie Bring It On. A National Championship team of cheerleaders goes back to defend their title, but a better team wins and after all of their hard work they earn 2nd place. As they accept their trophy they look at each other and say "Second place?" and with a smile they erupt in cheers and scream BRING IT ON! Bring it on, indeed.

I fought my way out of the finisher's holding pen and found Paul, I gave him a big sweaty hug and just pointed toward the beach. I ripped off my running shoes and hobbled barefoot toward the ocean. I walked right in and let the ice cold water numb my swollen feet before realizing just how cold it was and rushing back out. I ran back to give Paul a kiss then ran toward the surf again, this time letting the water reach above my knees and rush all around me. I took in the horizon and slowly withdrew from the waves. I stretched on the beach, not caring that wet sand stuck allover my skin. I went through my entire yoga routine right there, on the sand, with the water snaking up to my fingers as it reached out for me.

Finally I got cleaned up, and we found our way back to the team. We waited for everyone to finish and then said our good-byes. As always, when it comes down to the important moments in my life only Paul was left. We held hands tightly and headed for the shuttle. No matter how far I run, I always end up back at home.

Meal Planning

I am going to start sharing our weekly dinner meal plan so you guys can get an idea of what the heck we eat to keep 4 different people happy in my household. Paul eats freaking everything, but is happy as long as he is full and has meat a couple of times a week. I don't eat meat or milk products in any form, but I love the heck out of egg whites! JT is not allowed to have dairy or processed foods. Mica loves milk, but has started rejecting meat and I limit her processed foods as well. With a little planning and research I keep us all fed and satisfied for less than $100 a week on groceries! I usually make a bunch of stuff, and grab other random things from the fridge, and then put everything on the table with serving spoons buffet-style. Everyone just eats what they want. So this is what is on my table this week:

Monday: Morningstar Farms Vegan Riblets for Mommy & Mica, prepared fried chicken from Albertsons for Paul & JT, potato wedges, sauted kale & breadsticks.

Tuesday: Leftover chicken for Paul & JT, Amy's brand curried lentil soup, vegan potato salad (just use vegenaise instead of mayo, TADA,) steamed broccoli, & rolls.

Wednesday: Awesome Brown Rice, Soyrizo Fajita Mix, fried plantains, burrito fixings (whole wheat tortillas, shredded vegan cheese, salsa, guacamole, shredded lettuce,) soy & flaxseed chips

Thursday: Sloppy Janes (made with tempeh, bell pepper, onion, garlic & tomato sauce) served on sandwich thins & sauted kale.

Friday: Pizza Night! We have pizza every Friday, I order a Vegan Berkeley from Z Pizza & then a regular pizza from wherever. Sometimes I just make my own with homemade whole wheat dough, some ragu, caramelized onion, vegan cheese, jalapeno and pineapple YUM.

WEEKEND: This weekend I'll be running Surf City with some friends from the NF Endurance Team, so that's it for this week. See, that was easy!

Recipes:

Awesome Brown Rice: Saute onion & garlic, add 1 -2 cups of rice and brown, add cumin, seasoning salt & black pepper, 1/2 can diced tomato & chilis, enough green tea to just cover rice. Cover and simmer til all liquid is absorbed, about 45mn. Top with ground almonds and bake til almonds brown.

Soyrizo Fajita Mix: Saute onion & garlic, add 1 or 2 chopped bell peppers, 1 pkg of soyrizo & a can of black beans.