Monthly Archives

March 2015

Uncategorized

MRI 3/22/15 Results

The MRI results are in: “Findings: Compared to multiple previous examinations, contrast enhancement at the site of previous left parietal craniotomy and tumor resection is unchanged. The extent of flair signal abnormality is also unchanged compared to July 20, 2013.”                       Woo HOO!!!!  Still have to wait for final UCLA results in a few weeks, but with UW’s results like this, I’m going to remain optimistic. Time to dance!!! And now I can focus more on others, not me! Ha! YES!!! My ultimate goal is manifesting. I like this.

Continue reading
Uncategorized

Organizing Patient Data

My butt has been planted on a padded bench at a coffee shop since 7:30 am. I’m down in the city, in the place I love – Seattle – killing time until I can make my way to the records department at Harborview Hospital (the new location to house all of University of Washington patient records) to get my radiology report. Don’t worry seizure monitors, it was a split shot. I could have walked in there hours ago, they open at 8:30 am, but I’m trying to wait until Dan and I can read it together and I don’t trust myself to have the report and not read it. It’s too stressful to have that hot ticket in my fidgety little fingers. My plan is to ask for an envelope, and I’ll seal it. Then I can’t sneak a read before Dan. The thing is that I’m the kinda girl that can’t even wait for people’s birthdays or Christmas to give gifts. I get too excited. And although this is different, it’s essentially the opposite side of the same candle. I’ll have to grab the report before Dan’s off work so there will be a period of time where I will have to demonstrate enormous restraint. Ugh. I hate having restraint. It may be my worst – or missing – attribute. So what am I doing? I’m going through all of my emails, text messages, and phone calls, organizing all of my patient records. I have been helping lots of people over the years, and we’ve all talked about so much stuff, all these unique cases (as all cases are), and it’s a mess. I never had a good system, which I am realizing is a major misstep. Fortunately, Stephen (astrocytoma options) sent me a wonderful spreadsheet for just this…

Continue reading
Uncategorized

MRI Reschedule. Again.

What a day. My girl friend Laura picked me up this morning for my MRI (Dan had to work), and I realized halfway to the hospital that I forgot my Lorazepam – you remember my Lorazepam, it’s the under-the-tongue pill that stops my seizures from progressing. Usually, it’s not imperative for me to have Lorazepam on me at all times (although it would be smart), but for my MRI days, it is imperative. For a brain MRI with contrast, you go into the “tube” and they do a scan of your brain with a bunch of loud noises and vibrations. Then, they pull you back out and they inject the dye and do it all over again. The dye courses through your veins, you get the taste of saline in your mouth, there’s a heat that rises in your body. In that moment, the injection moment, several MRIs ago, I had an aura. Luckily, I had brought my Lorazepam into the MRI room (just in case) and it ended up saving me from being transferred to the ER which apparently is standard procedure if you have a seizure during an MRI scan. Today, when I realized I forgot my pills, in the interest of keeping the appointment, we did not turn around to get the drugs. Instead, acknowledging it was a hospital, we assumed they would be able to do something for me. I mean, all I needed was a 1 mg pill. A tiny dose. But, of course, it’s the weekend so they couldn’t verify (or wouldn’t verify) my prescription. After discussing with the nurses at radiology, in my backless gown no less, we decided to play it safe and not risk it. If I would have had a seizure it would have been a disaster, both emotionally and financially…

Continue reading
Uncategorized

Dropping Baggage (or Hair)

For the first time since diagnosis, almost five years ago, I went to my hairdresser Jesse, and actually asked for shorter hair. After years of shaving and growing out after brain surgeries, I finally got to the point where I made the choice – the choice – to cut my hair for style purposes. I had no idea how freeing, and reparative it would be. That I would feel weightless, both physically and emotionally. I have a couple of pictures. The first one is just after the cut….. The second is the next morning, bird watching with the cat…. It may seem silly to get my hair done just before a brain MRI, a foolish choice since it could be directly followed with another bald brain surgery, but you’ll remember that this year I vowed to not live in fear. Each time I overthink things I’m going to strategically continue on. I will not be paralyzed. It’s easy to do, to become overwhelmed and stagnant.  I’m still terrified, but like a happy sloth I’m slowing moving forward. And with half my hair gone, it should be a little bit easier. The cut has longer pieces in front and it’s a little shorter in the back. I’m the new 90’s throwback: party in the front, business in the back, letting my curly flag fly. I’m kinda rocking my own version of a reverse mullet. It seems quite indulgent to write a whole post about hair when it’s not mentioning my huge railroad scar, or baldness, or tufts of hair coming out of a scab. My poor skull, and follicles, and hell, everything above my neck, has been through so much. So tonght I write this post out of happiness and gratitude that I am able to just allow the wonderful ability of…

Continue reading
Uncategorized

Moving Up The MRI

Oh man, my face has broken out into blisters. Good grief, I am a ball of stress. This always seems to happen in the days/weeks before an MRI. Seriously, sometimes I feel like I’m a woman trapped in a neurotic miniature chihuahua’s anxiety problems. Between the seizure and my skin, I am getting some major warning signs that I need to get this MRI over with. I’m scared, like usual, and no matter what I do (nap, meditate, walk, garden, clean, work) things do not seem to be getting better. Last night I was texting back and forth with my bro, and I sent him this quick pic to make him laugh (and illustrate the blisters). What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn’t even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded. Isn’t it weird how scary it is to get an MRI when the truth…

Continue reading
Uncategorized

More Seizure Activity

Damn it. I had a little seizure episode last night. It wasn’t a big, aggressive, episode, but still very annoying, and frightful, and frustrating. I’m grateful that I’ve been able to quell a lot of the seizures, but even though they seem to be rarer and rarer, it’s still exhausting. It was such a freaking shame too, I had gone to a comedy show with my girlfriend Christel, and when we sat down we ran into a bunch of girlfriends from Friday Harbor. “Of all the gin joints in all the towns in all the world, [they] walked into [ours].” The show had me ripping my side in laughter, my face burning with blush from content, and doubled over in pure shock, then I noticed that I couldn’t feel my right arm, that it was numb, even though the room was very hot. The flickering of the big screens all over on the walls at the venue, the loud music and voices, combined with that heat, I felt an aura coming on and made a beeline for the exit. Thankfully Christel & Erin both knew what to do. Within moments I had pills under my tongue, enough ice water to service an international flight, and I was feeling better. We stopped the seizure from progressing, but I was down for the count. My arm eventually started gaining some sensation, but I was walking like a drunken sailor, and felt incredibly weak. Boy do seizures suck. I live in a world where even the most fundamental event of a comedy show can put me into a seizure tailspin. I still don’t know how to protect myself completely, from seizures, unless I just stay home all the time. Now I’m ruined for the day. I have a seizure hangover. My brain feels…

Continue reading
Uncategorized

STC: Panel Discussion

I finally did it! I have downloaded (it took hours and hours) and embedded an introduction to the premier of Surviving Terminal Cancer the documentary, from the premier in New York. Next is the full documentary, and finally the third video is the panel. I hope you enjoy! Introduction Surviving Terminal Cancer Documentary Panel Discussion

Continue reading
Close