Tuesday, August 23, 2011

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

Thursday, August 18, 2011

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.

Tuesday, August 9, 2011


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.)

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