Paring Down to Basics

I have been procrastinating on writing this blog for days, a feat in itself as I am incredibly limited in my choice of activities. Paul has been taking me for Hyperbaric Oxygen Treatment in Irvine as per Dr. Duma's advice to hopefully heal this radionecrosis in my brain and get my life back. I am ridiculously blessed to have access to this level of care, the means to attain it, rides to get there, people to take me there and back and care for me. As I lay in my little chamber inhaling the oxygen and visualizing healing bright light helping my brain cells stitch back together, little voices nag at me with negativity, I cannot give in to them. I have to just be positive. I have to be a hippie and read the Dalai Lama and not eat meat and drink tons of water... if I don't do those things, I don't know what else to do. So I take my medicine and vitamins, and when I find myself doing nothing I get up and do SOMETHING... even if to most it is nothing. I've been walking after Mica around the complex on her bike, trying to cook a real breakfast every morning, and washing a few dishes. I take my time caring for the kids, read them extra books, tuck them in extra tight, and then try to squint through maybe one show with Paul before my eyes just can't handle the strain anymore and I lie with my eyes shut pretending such a slow day has actually tired me out when all my body wants to do is RUN.

Meditation, prayers, deep breathing... at some points I want to say cut the crap, let's get real, and just throw something!!! But I have people... little people... who rely on me to be their Mommy. I have Paul who is bearing just as much stress as I am... and I have myself. Yes, me, I am worth the effort. Even if I had no family, nobody to love me, I like to believe I deserve to try for me. So I will.

What that means for me... and for those in my immediate circle, is that as of now I am on a needs-to-happen basis. I am stepping down from my role as Team Captain of the Long Beach NF Endurance Team. I will be attending, and walking the 5K, and cheering for all of us as we fight together. My co-captain John will be handling logistics. He is awesome and I am really lucky to have my good friend running things so I do not have to worry.

My fundraising page will remain up but I am not going to be going out of my way to do anything right now, emails, organizing, all of it feels like a challenge. This thing in my brain is like a burn, and while I am trying to maintain that it WILL HEAL, as of now I basically have brain damage. I panic, I can't drive, I pass out, things confuse me. I would be able to deal a bit better if I could just get comfy with my Hello Kitty blanket and pass the time in bed playing with my family and watching TV, but Paul has to work, the kids have school, and I can't see the TV. I feel scared and trapped and will definitely be adjusting, and learning who really cares and sticks around by just keeping me company so I don't lose my freaking mind any more then I already am. I don't expect most people to stick around, it is how life goes. We all have our own issues, as my Uncle says, "A tissue for your issue?" We come into this world alone, and we leave alone, and the only way to be happy is to focus on how much compassion we can give, and not worry about how much we absorb. I constantly see people talking about how disappointed they are when people don't DO things for them, reach their expectations, care. All we can do is control our own moods, and every time we feel alone, give, because its the only thing that cures the human condition.

Yes, I am all wise and yoda-like now. I blame the meds. Meh.

So to bring this all together for those of you who do want to do something:

Sign up with the NF Endurance Team and run for the cause at www.nfendurance.org

Come visit me, I love the company. Please excuse the mess, duh. Emails, texts, whatever, I am still here people.

If you are one of my kids' friends' parents, they are available for playdates and can use the escape.

If you pray to anyone, throw some in for me if you can and throughout the day if I pop into your head picture a bright white light cleansing and healing me.

As always you can donate on my fundraising page at... http://www.active.com/donate/nflongbeach2011/Olivia

NEVER GIVE UP

PS if you receive the link to this multiple times, my apologies, same goes for typos.

Inching forward without movement

I am in no mood for verbosity, I am blessed to have a lot of people asking me how I am doing but not really able to see well enough to text and email everyone back. So I sit and blog, and share it in one place, and when people ask me I direct them to my blog to be read as they wish... or not. I am hoping by updating it often, and pouring all of my negativity and hope into one bright page I can barely see, to purify the rest of my conversations from excessive morbid tumor talk. I caught myself being a total Debbie Downer last week at my friend Val's bonfire. Looking back, I probably talked more about NF then anything else that day, and that is not the life I choose for myself, or the conversation I wish to trap people in. We all have our cross to bear, every person you pass has a story of heartache. Its the human condition, and I refuse to be defined by mine.

Over the last couple of weeks I have been attempting to adjust to my lack of vision. I can see, but it hurts to focus, and so I try to conserve my time spent doing anything that requires me to strain. So my follow-up MRI was done Monday, and Tuesday I sat down with Dr. Duma. He does not feel going blind is inevitable, because the swelling is contained and nowhere near my optic nerves. The swelling on the right atrium of my right lateral ventrical is just nuts. If I remember correctly from the Biology class I actually passed in high school, the right side of the brain controls the left side of the body and visa versa. So the vision tract fibers lie across the atrium, and the right side of the fibers are where the swelling is, so the left side of my vision in both eyes is affected. I can't see anything to my left, and people walking up on that side startle me, but the right side of my left eye is fine. So I have these two right-sided windows struggling to work together, with a chunk of blur and nose in between, and they are becoming increasingly sensitive to bright light. Dr. Duma now agrees there is some necrosis happening, which is when healthy brain cells start dying off from radiation spillage. Radionecrosis being the technical term. On my last visit he did not yet want to commit to that diagnosis and sent me home to just find my balance and hope the swelling went down. As of this MRI the edema is still a problem and not shrinking on its own. Dr. Duma doesn't want me on steroids long term, as they are just horrible to be on, and he believes pulses of treatment may help. So I'm back on steroids for 2 weeks, still on the anti-seizure meds for the small eye seizures the swelling is causing, Vitamin E and a blood thinner to promote blood flow and healing to the area, and have been referred to a doctor who does Hyperbaric Oxygen Therapy in Irvine. I know absolutely nothing about it yet, but I consult tomorrow, and will share what I learn at that point and if we are moving forward that route. Most likely, yes, because I trust Dr. Duma's opinion. When I chose Gamma Knife for all of these tumors I jumped on the ship, and I'm in, all or nothing. Dr. Duma has kept me running, breathing, and seeing this long, and prolonged my Mom's life by probably 10 years. No matter what I do these tumors will grow, it's the tumors, not the treatments, that are at fault. I refuse to be cut up and filleted until there is nothing left of me to move, and I am a flickering light trapped staring out of a corpse. Instead I do my best to be aggressive in my treatments while passing the time just like everyone else. I do laundry, read to my kids, play cards with my husband, cook us all dinner, have friends over. I push a button, I fold a shirt, I chew my food, and life inches forward. At times it is mundane, at others poignant, but mostly just normal. I sleep a lot, and nobody wakes me up. Paul and I don't really bicker. The kids try to do little sweet things without being asked, and together put a blanket over me when I fell asleep on the couch. Paul took two weeks off to just breathe with me, and sometimes I walk in to find him washing dishes. We watch movies in increments, until it hurts too much, and then both fall into bed and sleep as deeply as we can into dreams where life is abnormal, because nothing is broken. What would we do with life if there was nothing to fix or fear? What would we hope for, or learn from? When I wake up I am happy, my kids are usually tangled in our sheets and light cuts through my blinds warming sections of my legs. Moments are all anyone has, and I'd rather have mine then anyone else's.

Blur

The edges of my life are blurry, purpose and intent comingled with days empty of accomplishment. I squint at the TV or computer, and then struggle to focus on the sea of people in a store, before finally looking to Paul and seeing only shapes and movement as he squeezes my hand to reassure me. He teases me mercilessly, and I laugh as only we can, at the ridiculousness of being 28 and deaf, and increasingly unable to really see anything from far away or focus on anything up close, on my growing list of old lady ailments, at my inability to do most of the things I love, but my odd ability to constantly find new things to love, that are then taken away as well. We laugh as he talks and I cock one eyebrow in a very yoda-like way, as though I understand it all, even without having any idea what he just said. I look away and squint, he looks the same direction I do, and squints, and we both erupt in hysterics. Then there are the moments I panic, when I realize even if my body gets strong enough to run again, I would be terrified to run not knowing where I am at all times, and possibly nauseated by the bouncing horizon I used to direct my prayers toward and now have to sheild my eyes from. Then I remind myself I am overreacting again, of course everything will get better, I will run, and I will see. Maybe not quickly, and maybe not well, but jogging and squinting are fine substitutes. I push away the fear until it floats away and I am distracted by another thought, because if I let it rise up it might drown me, and I can't really swim anymore.

My MRI to check on the brain swelling has been moved up to Monday, because of the aforementioned vision issues. Last week I spent a couple of days with the kids and my Nana swimming at Harris Ranch. This weekend I am taking a family vacation to San Diego with my husband and babies to live my life the way I want to, like everyone should. I'm going to have fun, and Paul has promised to stick next to me so I don't get lost... again. I get to "see" some of my family in San Diego, stay in a hotel on the beach and follow my kids around Legoland for a day. Reading over this to edit before my Dad attacks with his virtual red pen (in my defense I CAN'T SEE)I realize that being ill has afforded me a sick sense of entitlement (pun intended.) Every day people tell me have a glass of wine, or just eat whatever you want, or go right ahead in line, or take a nap at 11am and leave the dishes be, just enjoy yourself, because you DESERVE it. It is a dangerous concept, especially when there are children involved. I wont have my children growing up thinking that when hard times come it is acceptable to just let life slip by. Blurred or not, life goes on, and we all make the best of it.

What kind of mother would I be if I didn't mention JT started 4th grade and Mica started Kindergarten this week, and they are both amazing and adorable and the lights of my life, and everything I do, I do for them (cue Bryan Adams song.)

One Day at a Time

The next time I have potential Gamma Knife damage on a huge area of my brain, remind me to see my Gamma Knife doctor before freaking out. This morning my Dad took me down to Newport Beach with my scary MRI CD in hand to see Dr. Duma. Over the weekend I had a few episodes where my vision on the left side of my left eye got a bit... wobbly. I saw a black spot at one point. My headaches have been much better on the steroids, but I am still just tired and nauseous all the time. Of course, its hard to be tired on steroids, so I have been exhausted while filled with pent up energy that has fueled my anxiety. I was ready to get information from Dr. Duma today about the huge area of swelling around my right ventricle, and expecting the worst after Dr. A scared the bejeesus out of me last week in DC.

Dr. Duma came in, looked at my scans, asked questions, and let his resident do a neurological exam. He then told me that when I had Gamma Knife in February he treated both ventricle tumors as well as the tumor running down the center of my brain, and that unfortunately a healthy area of my brain had gotten a bit too much radiation as well. I asked how this happens, he said it just does, it's a known risk. I asked if it was radionecrosis, and he said he does not like that term because it means brain cells are dying, and they are not. (sigh of relief) He said the entire white area is edema (swelling) and that I should continue the steroids for about another week and the swelling "should" absolve itself within the month.

Excuse me? Did I misunderstand? Last week I was told this was a really dangerous thing on my brain and I could be facing surgery. That my vision fibers were involved. I had already heard from Dr. A Monday morning clarifying that the fibers involved were directly related to the left side of my vision, which was scary because of the weird shimmering I have been having to my left.

Dr. Duma believes the swelling in the ventricle is causing small visual seizures. He also said it is time for me to get on anti-seizure meds because I just have a lot of tumors, and any of them could cause a seizure, but specifically for my current situation it is the best course of action. He said the modern anti-seizure meds are not a problem to take and I should do fine on them. I have to take steroids for one more week, and got some Xanax to calm the heck down. While Dr. A wanted me to MRI again in 3 weeks, Dr. Duma said if my headaches don't come back then 6 months is fine. I asked if for my own mental health and well-being we can just MRI in 1 month to be sure this issue is under control and he agreed although he really didn't think it was a big deal! I reminded him he wasn't walking around with this in his brain but he pretended not to hear me, HAHA, I am teasing, I love Dr. Duma. I don't blame him or Gamma Knife for this ordeal. I blame the fact that I have NF2 and countless brain tumors, and treatment is never going to be perfect. I will still have Gamma Knife in the future when possible and will continue to avoid surgery.

I asked what daily activities could potentially trigger seizures or problems. He then dropped the bomb on the Fabulous Running Mommy, he said hard exercise is not recommended for patients in my type of situation. He basically said, don't get red in the face, but that I can listen to my body and find my balance. No more marathons? No more speed miles? No more weight lifting? I'd rather be slightly chubby and be able to see my children grow up then hurt myself trying to attain a level of fitness slightly out of my body's reach, but the idea of giving up such a large part of my active lifestyle is a bit disheartening.

So, I was sent home with some meds and a smile, and told not to worry. I trust Dr. Duma's opinion because he is a Gamma Knife doctor and sees this all the time, and he said it generally resolves. I've been so afraid all weekend, I am having a hard time believing it could be that easy. My plan is to take my meds and rest until the MRI, and then take baby steps from there. One day at a time is all any of us can do, but a lot can be accomplished in a day.

This is your brain on Gamma Knife

My life is as stagnated as this blog. In 6 weeks I have gone from getting up early every day to run my house, care for my kids, bang out routines at the gym, hang with friends and cook fresh healthy dinners from natural ingredients... to laying on my couch with a neck pillow, getting my chores done in increments between dizzy episodes. My life was simple, but it was mine, and I want it back.

Last week I flew out to NIH for my biannual MRI's. I assumed these headaches would be explained away by a sports injury. I would continue to nurse my neck and take Excedrin, focus on yoga and jogging, and then slowly ease my way back into my routine, back into my life.

Instead I was told that one of the brain tumors I had treated with Gamma Knife has doubled in size in the last 6 months and introduced to this image...

The bottom images are 6 months ago, and the top images are now. The left images show the tumors themselves, and the fact that they look black inside is good, tumor necrosis has set in. However, the images on the right show the swelling and fluid around the tumors.

Yes, that top right image is my brain now... and no I am not on drugs. Doesn't it remind you of those old anti-drug campaigns? "This is your brain... this is your brain on... radiation spillage?"

Yes, somehow, radiation spilled into my brain and a huge area of it is crazy swollen. I have no further information until my GK doctor gets me in this week so I can show him the MRI's.

The doctor I see at NIH for the NF2 Clinical History Study said "I am afraid for you." Honestly, that is a bit disconcerting coming from a man who sees worst-case-scenario patients on a daily basis. Apparently the swollen area has a bunch of nerves that control... vision. Yes, my vision is now at high risk.

I can deal with a lot, and I will continue to do so. I cannot even fathom being blind and deaf but the idea terrifies me. I think of how hysterical I was when the power went out and I couldn't find Paul for a few minutes. Everything was pitch black and no matter how loud I called out I had no idea if anyone was coming for me. I sat down and curled into a ball until I felt Paul's hands touch me, and then I just hid in his arms until he lit a candle and shadows lit up the walls. How would it feel to never escape that darkness?

I have to deal with this as I always do, I compartmentalize, and put things away, and just don't deal with them. Dwelling on a hypothetical situation is a waste of time, and I have half-convinced myself that I am being dramatic, and that any day now I will get my life back. But as day turns to night and another day of baby stepping through my chores passes, I can't help but glance at the fear edging my mind as I go about my business.

So, I am on steroids to hopefully bring down the swelling. I am to see Dr. Duma ASAP and have another MRI in 3 weeks. If the swelling or radiation has spread, then I am proverbially f*cked. At that point we would discuss "options" and in the meantime I have been sent home to let my radiation... marinate? I am a total hermit as of now, I am afraid to drive in case I have a dizzy spell or just suddenly go blind. I am bored and feel guilty for trapping the kids when they should be out enjoying their summer vacation. I am consciously forcing myself not to lay all of this on Paul, and trying to do nice things for him whenever I can because I don't want our family to revolve around me, and also because he is an amazing person and pleasing him makes me happy. So today I rest, and come Monday I don't care how I feel I am going to get a little piece of my life back. One day at a time, I will get it back.

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.

Power Puff Girls & Chickens...

This might be a bit lengthy, so grab a snack and get comfortable...

After having MRI's at NIH in December I sat with Dr. Asthagiri (the doctor in charge of the study)and went over my scans. His impression was that I am stable, and if you are a regular reader of this blog you already know how I feel about that. All of my tumors are growing slowly, but surely. Mofo, the brain stem tumor which I had treated with Gamma Knife last year, has supposedly not shrunken but stopped growing, which is great news in itself. Dr. Asthagiri is a wonderful doctor, but like any other profession there will always be differences of opinion. When dealing with NF2 it does not seem like anyone has the right answer, each of the doctors just do their best to prolong our lives with as little pain as possible. My regular neurologist is Dr. Duma, and I adore him. He has been my doctor since 2003, and before that he was my Mom's doctor. He saved her life at one point, and I will never forget that. Dr. Duma is the one who has helped me to form my long term care plan for NF2. We radiate any tumor that has the nerve to threaten me as soon as we are sure it is growing steadily. This differs from how most doctors treat NF2. The usual rule of thumb is to treat a tumor only when it is symptomatic. The problem that I have with that is once the tumor is symptomatic and you remove it, you do not necessarily recover everything you have lost. Most likely, it improves a bit, but you are forever altered, another chunk of your ability stolen by NF2. Over time those chunks become gaps, until you have nothing left to give. It seems to me that if you have measured growth of a tumor over several MRIs, then you know it is growing and may as well treat it while it is small and less dangerous. At this point another debate comes into play. Many doctors do not think people with NF2 should use radiation to treat their tumors. They say it does not always work, which is true. What they rarely mention is that surgically removed tumors can grow back just as easily as a radiated tumor can, and surgery has much higher immediate risks. The other issue is that by radiating the tumor it can become cancerous over time. In a healthy person with a random tumor that is a significant reason to have surgery rather than radiation. I personally feel it makes more sense for a person with NF2 to focus on immediate benefits and consequences, rather then delayed possibilities. Radiation is an outpatient procedure, and when used by the right doctors on the right tumors it can be highly successful. I have had 6 brain tumors and 1 spine tumor radiated, all stopped growing, and most shrunk within 6 months. Dr. Asthagiri explains this by saying every person with NF2 has their own tumor biology, and mine seems to be very susceptible to the radiation. He admits I have been very lucky. (really!?) This is not the case for all NF2 patients, unfortunately. However, I have to make my decisions based on my own history, which of course includes having watched my Mom have surgery after surgery, each one taking more than it gave. Every person in my family with NF2 has gone the surgical route, and every one ended up paralyzed, Deaf, blind, and dead before the age of 40. It seems to me that I at least have to try something different. It does not make any sense at all to follow the same path that has ended so badly before. So, against the advice of most doctors, I keep a sharp eye on every tumor and if it grows consistently I have it radiated while it is small. This method is at best going to extend my chances by a few years, and keep me running as long as possible. What we really need is a medication that targets the tumor's growth and stops them from growing or even forming. Otherwise the tumors will just play a game of Tetris in my head, building up slowly until there is not any room left.

In the meantime... after going over my MRI's with Dr. Duma yesterday we located 2 areas with tumors that are definitely growing and should be addressed now before they are too big to be radiated and would require surgical intervention. I am not having surgery, it is just not happening people.

In case you don't see the 3 headed blob floating in my head I made it easy to find. Several names have been tossed around for this 3 headed atrocity, but Cerebrus sounded too scary. The entire point of naming the little f*ckers (excuse my language Nana) is to make them less threatening. So meet the Power Puff Girls. They are going down. On previous MRIs these were 3 separate tumors, but with time they have grown and joined forces against me. I'll have gamma knife on 2 of them in February, but the area is too large to treat all at once, so I will have to have the 3rd radiated later on. Gamma Knife is amazing, and I am blessed to have it and avoid letting these things continue to grow or having a major brain surgery (although I totally need an excuse for a mohawk.) Gamma Knife hurts, they bolt a frame to your head. I am not looking forward to that, but it is only for a few hours and I will survive.

These are the Thoracic Chickens. When JT was just a baby I had a major spine surgery, Dr. Duma went in and removed every tumor in my entire thoracic spine. He couldn't even count them. Afterward my spine was as clean as I have seen it since I was a teenager. Now these f*ckers (sorry Nana) have the nerve to grow in on my nice clean spine. So every time I see them I think "Ain't no one here but us chickens." I added a chicken for extra emphasis on this point. Very scientifical. Anyway... these 2 tumors are actually working together to create a potentially awful situation. I will have them treated with Cyberknife sometime in February as well. Cyberknife does not hurt, it is the post swelling that worries me, but I will expect the best and prepare for the worst.

I was also momentarily diagnosed with a lung tumor, which on further investigation seems to be my heart, which is for some reason very large. Seriously. I then came home and opened my scans myself, and (mis)diagnosed my bladder as a huge pelvic tumor. At that point I just started laughing.

What else can you do?

Til Monday...

One week blends into the next as I wait for the sun to realize its summer vacation. Gamma Knife recovery is a simple one, come home and wait for my head to not feel like its in a vise. Easy enough. The kids wander around the house aimlessly, sucking down countless popsicles and passing out for random nap times. All week I have rotated between couch surfing, leaving the house for small errands, and half heartedly cleaning up the messes Paul and the kids leave in piles for me to find. They have taken good care of me, Paul making me a drink while JT cleans up after Mica and Mica tries to tuck me in and bring the puppy to me for a kiss. Its been an oddly comforting time, and I've been able to settle into it and enjoy it while it lasts, knowing full well that come Monday, its back to kicking ass and taking names!

I've avoided eye contact with my Runner's World magazine, knowing if I flipped through it I'd want to lace up for just a quick jog. Instead I'm taking this entire week to do absolutely nothing! My headache has subsided almost completely as of today, yet still I've spent it in sweats reading and cuddling as time ticks by with no accomplishments to claim. My energy is building back up and just waiting to be released on my To Do list, so the sun better come up Monday morning because I have got things to do people! Summer means hot hilly runs, recruiting, fundraising and planning for Long Beach, extra ab reps, laps in the pool, and homeschooling the kids 3 times a week. But not today... today I make the list, and Monday I smash it.

The Demise of Mo Fo and his Evil Twin

After a night of tossing and turning, then finally dozing off late in the night, I woke with a start just after 5am yesterday. Paul and I quickly and silently dressed, I kissed my babies good bye and slipped out the door past Sheila on my couch. Paul drove the 45 minutes down to Hoag Hospital. I tried to catch a few more minutes of sleep but my eyes just stayed open, staring out at the sea of red brake lights in the morning traffic. Paul reached over to squeeze my hand, and all too suddenly we had pulled up to the recently built Advanced Technology Center at Hoag Hospital.

The ATC is a shiny new building at Hoag that houses a newer version of the Gamma Knife called the Perfection, as well as an MRI machine and state of the art exam rooms. On all 3 of my previous Gamma Knife treatments I had been wheeled back and forth around the main hospital for different parts, this time everything was within 1 small building and I knew almost every staff member. From my perch on the exam table I could see a reflection of the hallway, and soon I saw what could only be the Tish clicking her way in with my Dad right on her heels. Since I was a child and would accompany my Mom to appointments while my Dad worked, when my Dad showed up I would always feel a sense of relief. A deep trust in my soul that will always believe once my Daddy is here, everything will be okay. I realized I felt that way as soon as I saw the Tish as well.

Once I checked in things began to move quickly. My nurse for the morning, Tom, is also a runner and it was a great distraction to chat about running and different races we have done. He set me up for an IV and I felt the familiar urge to get up and run far away to a land with no needles. This time, I resolved to just breathe, and the IV went in without any mistakes or digging. Dr. Hseih, the anesthesiologist, came in and informed me of all the usual risks... that he was going to inject me with a chemical and I might never wake up, and asked me to sign a paper saying that was just fine with me. I signed and reminded him that during my last treatment I woke up to soon, he promised to work on that. I should really hope so, I thought. Dr. Duma came in to place the head-frame, and my family was asked to wait in the other room. Dr. Hseih appeared at my side and began to inject it into my IV, I felt the familiar panic at my chest and wanted to struggle, but reminded myself of the nightmares I've had in the past and instead just took a deep breath and let go... While I slept Dr. Duma used a power drill to screw a metal halo onto my head at 4 different points. 2 on my forehead, and 2 in the back of my skull.

What felt like moments later my eyes snapped open and I could see past the metal frame on my head into an empty room. I had only been out for 20 minutes, and only felt slightly groggy. My family came back and gave me those big doe-eyed looks and supportive smiles, then went back to their conversation. I am surrounded by people who are used to seeing me be cut open, and on the scale of things Gamma Knife doesn't even warrant a Get Well card anymore! Soon another doctor came in and took some measurements, he kept grabbing the head frame and moving it a bit roughly, my eyes narrowed and I felt the words in my throat but instead I just closed my eyes and waited until he was through. I was then taken for a quick MRI right down the hall before being returned to the exam room again to wait while the doctors set up the treatment plan. The head-frame was squeezing my head like a vice, but I knew that was the only way to be sure the treatment was precise and well worth the pain.

Finally it was time for the actual treatment, we were led like a procession down the hall just one more door to the Gamma Knife room. At the last minute I stopped for the restroom and pulled Paul in with me. Things were getting way too serious, so I made him pull out his cell and record me doing a little booty dork dance, rocking out with my head-frame. We were laughing hysterically when we tumbled back out and the nurse just smiled as she led me toward the machine. The doctors then informed me that Mo Fo has an evil twin. The treatment would last about 45mn versus the 20mn we were originally planning for, and both Mo Fo and his twin were going down!

Gamma Knife looks like an MRI with a dome at the head. I was asked to lie down toward the top and then slowly leaned back until I felt a clunk that rocked my skull a bit and the head-frame locked into place. Everyone said their goodbyes and exited the room. The bed began to mechanically slide back until I was inside the dome from about my chest up. The head-frame was rotated back at a slight angle, so that the weight of my head rested on just the 2 screws stabbing into my skull. It was uncomfortable, but I knew it had to be done and just closed my eyes. The dome I was locked into shot many tiny precise beams of radiation directly at the tumor in its shape while the head-frame kept my head in place. All of these small rays of radiation were individually harmless to the surrounding brain tissue, but when they all converged directly on Mo Fo and his evil twin, it mutated their cellular DNA causing destruction of the tumors. I could just imagine Mo Fo and his twin screaming in high pitched horror, "We're melting! Melting! What a world... what a world..." (um like in the Wizard of Oz duh) The treatment itself is painless and invisible, although it would be so cool if the Gamma Rays were visible!

After about 45 minutes the bed slid out and the doctors came in to help me up. I went back to the exam room for head-frame removal. For the removal you stay awake and although it was not painful I wouldn't say it felt good. An odd compression feeling happens as they unscrew the back screws, and I could feel the bones in my nose almost caving back. Soon all 4 screws were removed and as they lifted the head-frame I could feel warm blood trickling down. I was quickly cleaned up and bandaged with a Lady Gaga inspired head wrap, with attached ice pack of course. The IV was removed, and that was it!

I slept the entire drive home, came in and slept some more. My girlfriend Sheila is so awesome, she watched the kids all day and then at her insistence took Mica with her for a few more hours so I could just rest. I finally woke up a bit later in the day when Mica returned and tried to pet the puppy, but when I bent over blood started gushing from my forehead, and it finally happened, I freaked out. I started yelling for Paul and tears ringed my eyes. I don't like blood, who does? He rushed me into the bathroom and Mica followed us screaming bloody murder. There is no room for panic and tears when a toddler is watching, so I wiped away the tears that never fell and told her it was ok, Mommy just has a little boo boo.

I felt well enough to meet my parents for dinner at Wabi Sabi, where we raised our sake and plum wine and toasted... to my Daddy for his birthday, to God and technology, to my doctors, to life, and to love.