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Inching forward without movement

Posted Aug 18 2011 12:00am
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.

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