Monthly Archives

October 2015

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UCLA Tumor Board

Morning Guys! Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time – it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn’t mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend’s house and upload the report. It took a total of four minutes! Talk about fast. That’s way better than the several weeks it usually takes. It’s not that the US mail takes that long, it’s the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board. Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It’s disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Na├»vely, I keep hoping that the tumor has shrunk, but no such luck. If we’re lucky, we should have an update on the status of my…

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MRI RESULTS!

Here are the important things: 1. Surrounding FLAIR hyperintensity is unchanged. 2. There is no evidence of new areas of enhancement at the resection cite or elsewhere in the brain parenchyma. 3. A right frontal development venous anomoly is noted. (?) 4. Stable post surgical changes related to left parietal craniotomy and tumor resection without evidence of recurrent disease. Looks good to us!!!! Time to jump for joy and make Dan a pack lunch for his second shift at work today. At least these long hours can keep his thoughts happy! Thank you for the love and support, and the ride to the hospital from my friend Jozann! What an angel she is. I told her to just drop me off but she wouldn’t leave me by myself and stayed with us the entire time. Now THAT is a friend. You guys sure know how to support a girl. Phew!!!! WOOOOEEEEE!!! Now I can stay up all night reading my book about the Lusitania disaster. Hey, we all gotta have ways to celebrate. Ha! Final results from UCLA should be in a few weeks, but with no obvious regrow, I’m a happy girl!

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When You Can’t Bear it Alone

You guys are so sweet to me. Thank you for picking me up with the kind comments. I always feel awkward by how nice you all are, feeling like I don’t deserve it. But it makes me feel incredibly special too – regardless of whether I feel like I don’t deserve the praise. It took some time, but little by little I started feeling better. I did it by forcing myself to get out of the house and back into my walking group (other than today, but it’s because I couldn’t sleep last night and was afraid I might have a seizure). They always make me smile, fill me with hugs, and encourage me – as they do with everyone else in the group. It’s more like a mutual appreciation and laughing club, that walks. In fact, I feel like I stole that description from one of the fabulous women in the group. So far I’ve been taking it up a notch by running to and from the walking group (other than accepting a ride home one day). Those stupid amazing endorphins really do change your mood. It’s annoying but true. Aaaand convenient, I guess (she said begrudgingly).  The MRI is set for this Saturday, with preliminary results on Monday. (I just go to the UW records department to get the results myself – no doctor.) I’m stressed, and not sleeping well, but I’ve laid off the anti-anxiety pills because I’m afraid I’ve become dependent in order to sleep. I never want to be dependent on anything. *isnt that ironic*  As I type this, Dan is taking his three hour nap, he’s currently scheduled for four days of 18 hours per day of work (trying to make up for the added expense of heading back to Germany unexpectedly for more…

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Impending MRI Impending Life

I don’t want to share this. I don’t want to say it. I hate that I have to release, but the truth is that I can’t handle my feelings. I have best friends, and I know that they would do anything for me. They know that I hurt, but they don’t know my pain because I can’t tell anyone, not even them. I’ve never told anyone how I badly I hurt. The pain of this, the diagnosis, the hamster wheel I live on. I give pieces to Dan, to my mom, to my dad, but if I gave any one person my whole sadness, it would be the meanest gift, and I refuse. Yet here I am, I can’t stand it anymore. But it’s a choice to read; close the window if it’s too much.I would rather cry alone, than burden my friends. I would rather hurt, and sob, by myself, because my friends have their own lives. No one’s life is easy. It has taken me years to understand that, but I get it now. I’m a ghost that is here, but that doesn’t live. People see me, or my hologram, but they don’t know me. I just float.I was meant to be a mother. I was meant to be a mom. What is my life without that? I found the most kind, handsome, generous, thoughtful, fantastic, man, but he always expected a family too. But now he worries about me. ME. He should have kids by now, he should have that beautiful love from his own children, that sticky snot filled, accidental wet bed, picky eating life, and I can’t give that to him. And what is a life without children? Seriously, to those of you who read this, can you imagine your life without your kids? That is the life…

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