Monthly Archives

February 2014

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And I Still I Smile

It’s hard to explain, but my brain is having a very hard time. It’s issues with word finding, writing (transposing letters, omitting words), forgetting what I’m doing, bouts of lightheadedness, and organizing thoughts. If I hadn’t just gotten good scan results I would believe wholeheartedly that the tumor was growing back for a third time. Of course, these issues have been around since the first brain surgery, however, in the past month and a half it has been increasingly worse. I’ve tried naps. I’ve tried cutting back on communication (to rest the brain). I’ve cut back on activities. I’ve fiddled with my diet. I’ve analyzed any changes that may be the culprit. I’ve discussed it with Dan at length, multiple times, to no avail. I’m just beat. So tired. All the time. I’m used to being exhausted, but when my brain doesn’t work properly it’s confusing, distracting, scary, and most of all disheartening. For over a month I have felt trapped in a brain that has gone rogue. I have little control. I can’t make it do what I need it to do. I’m just along for the ride, terrified in the passenger seat. I try to push through, to shower, to create a meal, to do dishes, to pick up the house, each task a triumph. A success. That’s what I’m diminished back to, back to the months after surgeries. I keep finding myself in the kitchen, knowing I was washing dishes, but I’m looking at the dirty dishes confused as to what to do with them. I know I need something to do whatever it was I was going to do but I’m lost. I’m confused. I stop. I go back to the couch to rest. I think, and think, and then I wonder, was it a sponge…

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RLR Medical Fundraiser

Who loves to run? This girl! I am deeply honored to share the news that there is a new fundraiser on Saturday, March 22nd in Friday Harbor that includes a 10k (6.2 mi) and half marathon (13.1 mi) run. It falls just a couple of days after my immunotherapy shot in New York, but Dan promised he would take me up to the island so that I can run or walk my way through the race. I don’t think I’m capable of completing a half marathon, but I’m all about the 10k. If I start to feel sick, or seizure-y, I’ll chill out and bow out of the run for the sidelines. (But between you and me, I’m preeeeetty sure I’ll be pounding the asphalt until the end.) I know this note is a little last minute as far as training goes (that’s my fault) but if you’re around on the island and are interested, please come join us! If you’re not a runner, maybe you’d enjoy walking it? This race by Run Ladies Run is an annual event and this year they are sponsoring me. The proceeds from the race are all going to my medical fund to help me continue my life saving treatments. I am incredibly grateful, and like I said, very, very honored. I stole a picture of the event headmasters, the women who have passion in their sneakers, I hope they don’t mind. Look at those beautiful faces! I can’t wait to run in their footsteps. If you are in the running spirit – or know someone who is – please click on the photo to register, or you can register HERE. For full race information, including maps and some bumping tunes (they have a great music selection on their website), click HERE. And of…

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Ethereal

Possibly in this very moment the good folks at UCLA on the tumor board are reviewing scans of my brain to determine if I’m stable. All I can do is hope that they have the same findings as UW. Ultimately, if they don’t agree with UW, if they believe they see new tumor growth, it will be significant. I go to UW for the scans, but I don’t get treated there. UCLA’s opinion is what matters to me. They are the doctors that follow me, and make recommendations on treatment. So, I sit here crossing my fingers waiting for my decaf green tea to cool enough to sip. Yesterday, probably no doubt due to stress, I had a very small seizure. Seizures suck. I hadn’t had one in months, so there goes my streak. It was a simple focal seizure, so it really wasn’t a big deal. It’s just a bummer. My simple focal seizures occur with an aura, which is basically a premonition of a seizure. I have a few seconds to prepare myself. I grab a lorazopam and place it under my tongue, then find a dark, cool, quiet place. My right arm then begins to tingle, the sensation growing up toward my face. Sometimes it reaches my head, always only effecting my right side. The  yesterday, though, the tingling hung around my right elbow, never spreading. Of all the options I was pretty stoked (no grand mal, no loss of consciousness)! A very benign seizure indeed. I’ve had a panic attack in the past, before I ever even had a seizure, and that panic attack was tenfold worse than my little focal blip. This guy lasted seconds, and if I was a good liar I would have tricked myself into believing it wasn’t even a seizure. Damn…

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A Halal Kind of Life

Woke up to savage rain and violent gusts of wind this morning at 4:15 am. I was bummed that I was startled out of my dream, but excited to give Dan my Valentine card. I do love waking up with Dan on the odd days that my eyes shoot open like tulip buds at five in the morning. I get the house bumping with music while Dan shuffles his feet and I get the French press going pretty much like this (especially the “drum” solo): It’s a special talent. I’m an obnoxiously happy morning dancing cook. In fact, I’m pretty much an obnoxiously happy morning dancing anything. Some have implied a need to shorten solely to just obnoxious morning person, but I’d argue that I bring the party first thing. Best way to start the day. From the moment my eyes open I might as well have been awake for hours, it’s instant. I do love a good morning sleep, but those are much harder to come by. I’ve always been a morning person, possibly carried through by my nature as a light sleeper – and I never want to miss anything. As for MRI results, I’m still waiting for UCLA’s confirmation on the “no new growth”. My scans didn’t make it into last Wednesday’s tumor board (it’s a very busy place) so I have to wait for next Wednesday, the 19th. One of the hardest things about living with a disease like this is all of the waiting. It can tax even the most patient of saints (of which I am not). It’s impossible to remove the fear, impossible to forget, but I have learned that deep breaths and surrender can keep me on track. My life will never be as it was before, but I don’t want to…

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MRI Results

As the neurotic tumor fighter that I am, I drove myself to UW this afternoon to get the radiology report from the medical records department, unable to wait the 1-2 weeks for the typical UCLA response. First, a reminder that my two hospitals don’t always agree, however, it looks like we have a green light from University of Washington Hospital. To quote the final impression: “Stable postoperative changes within the resection cavity. No evidence of new abnormal enhancement or increasing surrounding FLAIR hyperintensity to suggest recurrent.” BOOM. Done. YES! This report was using a comparison to the July MRI which is even better than comparing it to October. What a relief! I have been so nervous. I wasn’t even able to eat today. I will wait for final celebrations for when I hear from Dr Liau at UCLA to confirm, but man, I am very optimistic. If she, and the tumor board agree with UW then I’m good! All the the expense for my immunotherapy, the venom, the supplements, the diets, the exercise, the research, the sweat, the energy, the effort, it has all been worth it! Now, I just need to keep the ball rolling. I want to remain healthy! I’m already happy, so the gift of health is just more than I can dream. It is always my biggest goal, my ultimate hope, and the main thing I wish for, what I work toward. To celebrate, Dan and I are headed to the gym. As I sprint it out on the treadmill, I’ll bet I’ll be the only one with a huge goofy grin on my face, just teeth, smile wrinkles and sweat, that’s all they’ll see. The only new growth I want to see is in my garden!

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Chemo?

I just sent my buddy this pic, telling her I was sending a face hug (more like a face laugh, though). The MRI is over, we mailed the disk to UCLA, so now we try to wind down and drink lots of water to flush out the contrast dye. Poor kidneys.  The radiology technition, after the scan, asked me if I was undergoing chemo. That scares me. He doesn’t compare old scans, he only looks at the current images. Does that mean he saw something? Ugh. I hope not.  Time to rest. And gotta go wipe down Mr Lemon’s leaves, I noticed they’re a little dusty.

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The Life He Deserves

There’s been a lot of snuggling in our little cottage tonight… The brain scan is scheduled for 7:30 am tomorrow morning. I should have a copy of the scan by 9:30 am or 10:00 am. A final readout should be available on Monday, Tuesday at the latest.  Am I scared? Yep. Always. It’s unnerving and surreal to have a mass growing in your brain. I’m starting to become an expert in a process I have no desire to be fluent.  If I have a bad scan, we have back up plans. They aren’t definitive, it has to do more with further genetic testing, but it’s a start. The biggest disappointment, if they show tumor growth, will be the doubt it will create in my mind. It would, inevitably, effect my confidence and psyche. I haven’t felt this good since before I was diagnosed. I’m gently driving again, and have been free of auras and seizures (knock on wood) for just shy of a year. I have more energy, and I’m all around happier. I’ve found a groove.  I hope, I dream, I pray that my tumor has not grown and that I will have four more months of freedom.  Tonight, Dan picked a funny movie to distract ourselves. Tired from a long day, I scooted over and leaned my head onto his lap. I rolled to face him, and he looked into my eyes. We sat there ignoring the movie for a few moments. I don’t know what he was thinking as he stroked the hair from my face, but I was thinking about how sorry I am that he has to deal with this type of stressful life. This roller coaster of living scan to scan, never knowing if things will be okay, or if they’re about to get…

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