Monday, March 23, 2015

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.

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 purpose, and I'm having a blast entering all of the data. I love me some organizing. It's helping me realize how random my accumulated patient data is. It's making me want to reach out to everyone and see if they can fill out some info about how they're doing now, what they're taking (treatments, supplements, off-labels), how often their MRIs are, what their pathology is, the mutations, who their doctors are, etc. all that good stuff. The more we know about what we're all doing, the more we can start correlating and working together. I keep saying that there's strength in numbers, but the truth is that if we aren't organized, the information is almost useless (not really, but it definitely isn't as helpful). Just so you know, I won't share your private information, I'm just trying to make sure that I can keep up with all of you and make sure you're doing okay. And if you allow me to reference your case to others, it might be helpful for others. An example might be anecdotal information about dosing and side effects of off-label use. (No names would be needed.)

That's what my day is looking like. This is my distraction that makes me happy. I feel best when productive, and I feel best when I'm focusing on other people's needs. I'm excited to beef up my spreadsheet, very hopeful that it could make things easier for all of us. As each of us continue to be successful, or at minimum continue to try new treatments, and new combinations to get healthy, it's a win-win for all. Doctors have a lot on their plates, and I don't expect them to fix everything. As you know I take a lot of responsibility for my health. I don't expect anyone to cure me, but me. That includes choosing the right team to employ (my doctors, and nurses, and experts). But I do the majority of my own work. People rarely give us things in life, not the big stuff anyway. People don't just give great jobs just because, they give jobs because you've earned it by the resume you've built, by the experience you've gained. They don't give away houses just because you want one. You have to save money, or do the research to find supplemental programs that will help you get a roof over your head. All things in life take work, effort, but you don't have to see it as a burden, you can just look at it as a process. Everything is a process. Is it all fun? Nah. Course not. But with the right mindset, and the right people around you, anything can be fun. Hell, I'm even having fun today as I await my fate.

I've been chilling in Green Lake and it's almost time to start the hour long, two bus, trek to Capital Hill to visit Harborview's medical records department. A journey that in a car, if I could drive, would be less than 15 minutes. Thus goes the life of an epileptic.

Saturday, March 21, 2015

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 (the ER, then a holding room for watch and wait).

So tomorrow morning at 7:45 am, with Lorazepam in hand, I will try again for a MRI scan. From the whole experience, what I learned is that they schedule and provide appointments for MRIs on Sundays. Sundays?!? How cool is that? Here I've been thinking that Saturdays are the best because they're slow and quiet, but now I know I can do them on Sundays, and the nurses say it's even quieter than Saturdays. I'm pretty excited. Oh ya, and I learned that I really do need to keep Lorazepam on me at all times. It just makes things easier. Guess I learned two things today. :)