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.

Whiner

Sometimes my body fails me, no matter how hard my mind pushes. Every run since my last has been consistently worse. I finally realized something is going on with my health, and have come to blame the thoracic chickens. I can feel them pressing into my spine, stunting my breathing and pushing my posture off even more than usual. On Wednesday I left my house with the intent of running 10 miles, and at mile 1 I was hobbling along gasping for air as my sides cramped in around me. 2 weeks ago I ran 10 miles in 94 minutes and was disappointed with that time, now I would kill to be able to run like that at Surf City. I am doing the usual, I took a day to rest, did some yoga, emailed my neurologist and called my GP. BLAH BLAH BLAH. My neurologist wants me to have an EKG and chest x-ray to rule out simple causes for my shortness of breath and cramping. I would agree, except that we already know I have 2 large growing tumors right there on my spine in the exact place that would cause this. Just prescribe me some steroids, let me deal with the 'roid rage, schedule me for Cyber Knife, and lets get this over with!

I am tired of my life being interrupted. Every time I convince myself I am normal I get a slap in the face from another tumor, taunting me with a list of things I wish I could do. I wish I could sit and talk to Mica, and teach her to read. I wish I could hear JT play guitar. I wish I could hear Paul tell me he loves me. I wish I could hang out in a group and get all the inside jokes. I wish I could walk without people thinking I'm drunk. I wish I could sit through Taekwondo without feeling like I'm on fire and having my legs fall asleep. I wish I could run forever and leave the pain behind me. I wish I could picture myself getting old with Paul. I wish I could snap out of this funk and stop being such a whiner, whining is really unattractive.

So there it is, and here I am. I can choose to wallow, or choose to leave it here in writing and let it go. Well I choose to wallow! No, I'm kidding, the day I lose my ability to look at the bright side is that day I know I have nothing left. Instead, I choose to let it go and do my best for the rest of the day. I choose to just keep pushing back, to stop wishing and start accepting, to live each day remembering that it is a gift in itself, to find joy in the smallest moments and sleep deeply knowing I am loved by my family, friends and Goddess. Whether I am complaining or smiling, the pain is still there. I may as well be in pain with a huge smile on my face.

Race Standards

Surf City is just 2 weeks away, and I find myself measuring everything by race standards. Two weeks is really 2 more long distance runs. Food is seen as fuel and water as hydration. Everyone I hang out with drinks beer and I politely decline each offer, even when I rest my mind's eye is focused on my goal.

The first time I ran a half marathon I finished in I believe 2:35. I was happy with that time, because your first race is always a PR! After a few more mediocre attempts and a year of sluggish training runs I logged a 2:18 at San Francisco. I will never forget the feeling of running across the Golden Gate bridge and realizing I was flying. The hills of San Francisco fought hard, but that day I won. I have steadily improved since then, taking time off as necessary for life, but last month when I ran in Las Vegas and clocked 2:05 I knew a sub-2 hour half was within my reach.

Last week I finished my 10 mile training run in 94 minutes, just 4 minutes shy of the pace I would need to sustain to reach my goal. When I set out this morning for another 10 miler I had only one goal in mind, to improve on last week's time. I knew I may not hit 90mn exactly, but as long as there was forward momentum I would be satisfied. I started out strong, clipping miles at exactly 9:00 and 18:00, but by mile 3 my old friend Side Stitch decided to tag along for the ride. I tried to fix my posture, my breathing, my form... but every time I sped up to the necessary 9mn per mile pace my side cramped until I was forced to slow down and wait for it to subside. At mile 3 my stopwatch was already past the 30mn mark, and I knew I was in for a long 10 miles. I always chant to myself as I run. Usually I say "Pain is weakness leaving the body," or if someone passes me I say "Run your own race." By mile 7 I was telling myself "Just do your best," and praying I would at least be able to hit a 10mn per mile pace. On the shaded parts of the trail I would begin to perk up, but that mid morning hot sun was stalking me and I found myself dragging across a blistering half mile stretch of heat. I finally reached the end of the run in 1:45 and trudged back to my van unsure of if I was capable of breaking 2 hours at Surf City in just 2 short weeks.

I wonder why I even do this to myself? The last 4 miles of that run were incredibly miserable, and my back is in a series of knots and pain that are only going to stiffen by morning. I could stop, quit, give up and give in. How different would life really be? Then I remember that feeling on the Golden Gate bridge, I remember looking at my watch in Vegas and realizing I had clipped my PR by 13 minutes, I remember when I "ran" the full marathon in Las Vegas and saw all of my family screaming for me at the finish, and my kids running on their little legs with huge smiles, ready to cross the finish line with me. I remember all the friends I have made on the NF Endurance Team, the pasta dinners, the expos, the photos and the medals. I remember every race morning, the anticipation while the Star Spangled Banner played, barefoot men covering their hearts next to war vets running in camo and soccer Moms in tutus. All of the amazing people I have seen on the course, people getting married while running in Las Vegas, an 80 year old man passing me in Long Beach, the Pacific ocean in Surf City. I remember every finish line, how it seemed so unattainable, but the harder I worked the closer it got. All of those final stretches, no matter how tired I was or how long I had been limping, at every race I reached down deep into my gut and ran like I stole something for a big finish. At every finish there was a smile on my face so big my cheeks hurt because no matter how many thousands of people had crossed over before me, I had won my own race. I had done my best and never given up.

I never will give up, I'll run until I can't run anymore, and nobody can stop me. Not a cramp, not a stop watch, not the heat, and not the back pain. For all of my chanting there is only one that really matters, "Never Give Up."

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?

Prepared

There are four weeks left until I hit the half-marathon at Surf City for the 3rd year in a row! The NF Endurance Team does not participate in this event officially, but we will still have several mavericks running strong in their yellow singlets, including me of course! I have spent the last 2 weeks lounging with my kids, eating with my family, and running 5K distances on the treadmill. After finishing the Las Vegas half marathon in 2:05 in early December I assumed this all would be adequate to keep my fitness level strong enough to hit the ground running this week in preparation for Surf City.

I set out this morning on a 10 miler with a goal of finishing in exactly 1:30 at a 9mn a mile pace. I stepped outside the door and the cold air smacked me right in the face. I shrugged it off, assuming that I would warm up as I acclimated but by the time I dropped both kids off at their respective schools the chill had settled deep into my bones. There was no friggin' way I was going to run 10 miles with my breath frozen in my lungs! I headed straight for the gym, resigned to my fate of slogging out a tedious 10 miles on the dreaded treadmill. I cheered up when I realized I would be able to manage my pace more efficiently and even had lofty ideas of running an entire 13.1 miles as I watched Regis and Kelly on the big screen. I calculated in my head that if I want to run 13.1 miles in 2 hours, I need to run 6.55 miles in 1 hour, and cranked the treadmill up to a 6.6 mph pace. By the end of the first mile I was sweating, and at the end of the second I was already focusing on breathing correctly instead of hyperventilating. I took a water break at 30 minutes and accepted that I would have to scale back if I did not want to risk an injury. I ran another 30 minute increment, varying the pace in an attempt to squeeze in a bit more distance, and finally finished in exactly 1 hour at the 6.55 mark. I gasped for air and almost lost the bit of pineapple bread I had eaten just 90 minutes earlier. That seemed like a lifetime away as I held onto the bar of the machine and waited for my head to stop swimming. I finally cooled down, then trotted upstairs for some punishment. Not completing my goal mileage at race pace was a smart decision, I remember my knee injury all too well and do not want to repeat history. I still hate the fact that I fell short of a goal. I went over all of this in my mind as I went through my entire weight routine and cranked out extra leg-lifts. I did my best for today and left it all on the treadmill, all I can do is respect the distance and keep on running. If I add 15mn each week of January to the run I completed today, I still have a chance of breaking 2 hours in Surf City. No excuses, no whining, no tears.

Happy New Year (from yet another Mommy blogger)

Happy New Year to any of my readers who are still left after such a long break! My last post left me feeling creatively exhausted. I took some of my most intimate feelings and just let them explode out of me. It was cathartic and terrifying at the same time. My feelings have shifted over the last few months and I have had a harder time pointing out the silver lining in every situation as I usually do. I have come to accept that the darkness is just another part of me, but never will I allow it to control my daily life. Fear is no doctrine to blindly follow, it only extends suffering that cannot be avoided in the first place. With that in mind I thought of the resolutions I set for myself at the beginning of 2010, and am happy to say I met every one!

• I broke a 25mn 5k, at Long Beach with the NF Endurance Team
• I broke a 2:30 1/2 marathon, by far in 2:05 while at the Las Vegas Rock N Roll Marathon
• I wore a bikini over summer and felt proud to do so
• I continued to avoid the consumption of animals, and decided shrimp does not count on occasion!

Now I am excited to look forward into 2011, but have a healthy dose of trepidation keeping me on my toes. While reviewing my 2010 goals what struck me most was how selfish each goal was. A resolution tends to be selfish by concept, but there is no reason that with so many goals all should be focused only on myself. With that in mind I am anxious to reach my 2011 New Years Resolutions over the coming months:

• Break a 24mn 5k (I did this in 23:47 this morning, but want to translate that performance to an official race!)
• Break a 2 hour 1/2 marathon (I'm looking at you Surf City!)
• Get my body fat percentage to 15%
• Spend more time pursuing hobbies with the kids, to be measured as at least 2 specific activities a week each or together.
• A financial goal (specifics of which are "none of yo bidness")
• For our Long Beach team to raise $10,000 for the Children's Tumor Foundation this year.

What are your New Year's Resolutions?

Existence

This past week I have been at NIH in Bethesda, Maryland for my 3rd trip to participate in a clinical study of NF2. Each visit I fly out with Paul and have high-tech MRIs and see specialists for the smorgasbord of issues NF2 has gifted me with. I've swallowed barium mixed with pudding in front of a moving xray, had fluorescent dye injected into me as multi-colored lights were flashed into my dilated eyes, been timed as I used one hand to pick up quarters and place them in a cup, and been poked with many an IV by incompetent nurses who don't seem to know how to get the vein on the first try. After all of the tests on the last day I sit down to go over the results with the doctor in charge of the study. Dr. Asthagiri is friendly and empathetic, he makes looking at tumors in your brain feel like opening the mail, just another task in a busy day. I have been blessed in my NF2 journey. I may be Deaf, but I have so many NF2 friends my age who cannot walk, see, talk, eat, or even think clearly for all of the surgeries, tumors and medications they have been assaulted with over the years. The fact that I can run and do not suffer from facial paralysis labels me as "lucky" in the NF2 community, and I am grateful every day for that. However, on my biannual MRI results day I am not comparing myself to others, I am instead forced to look directly inside myself and see the army of tumors attempting to choke out my entire brain and spine.

Each visit I have only minimal growth, but that growth is measurable over time and as it stands now I have a 3cm tumor that looks ridiculously scary and intrusive embedded right in the top center of my brain. It has a tail winding back like a whisper the length of my entire head. The space between the 2 hemispheres of my brain looks disgusting, lumps of tumors clot together in trails, others stand alone in random places. MoFo has stopped growing and is stable, but has not shrunk, and is now surrounded by baby tumors all lunging toward my brain stem. After swallowing the image down I asked the Doctor to show me my spine MRIs. We went through each section, and it seems my spinal cord is barely dodging contact in too many places to count. After thoroughly reviewing the doctor told me that as of now I am stable.

STABLE!? (and here comes the rant, if you are having a nice day look elsewhere before I ruin it.) How the hell is having so many tumors I cannot count them stable? Is stable synonymous to "There is not a damn thing I can do, keep running until you lose every single bodily function one at a time, your dignity, as well as your ability to communicate and partake in life with everyone else, then die." or does it mean "Yup, you still have NF2 and there is still not a cure, and no matter how healthy you eat or how much you run this is something you cannot control so just go eat some chicken Mcnuggets and wash it down with some JB because you'll be dead before it matters anyway." OR does it mean "We see people way worse than you every day and so we are unable to validate your fears and concerns and instead want you to go home and pretend you will get to ever be normal, while everyone around you looks the other way and pretends the same thing while slowly distancing themselves from you so they don't have to cry when you inevitably die."

Now here comes the part where I end on a high note, but today I have nothing to give. I am just empty. I think it is particularly cruel to have watched my Grandma, Uncle, and Mom all go through this before it is happening to me. I know all too well what is about to happen over the next decade, and wish I didn't. I wish I could lie to everyone but I can't even lie to myself right now. I already feel apologetic for my rant, reminding myself that I am not the only one with problems, and I am blessed in my life. I have excellent medical care, am surrounded by a family who loves me, have a solid marriage with my best friend, children who make me proud, and friends who honestly care about me. Would I rather live to be a hundred but live those years lonely or in squalor? Isn't life about the quality and not the quantity? On most days I truly believe in my heart that the amount of time God decides to grant me is more than enough, but sometimes I am just not that magnanimous, some days I kiss my kids extra hard and think "I don't want to go." Why does everyone else get to live while I have to die? My parents, Paul, the kids, will all continue on, and I'll just be a picture on the wall. They'll only hang the ones of me now, bright and smiling. The ones of me in the end will be hidden, and eventually forgotten. Admittedly, we are all resigned to the same fate, it just seems my luck will run out sooner than most. I cling desperately to the hope for a cure, and strive to make a difference in each day I still exist.

What else can I do? What else should any of us do?