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. :)

Thursday, March 19, 2015

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 a haircut give me peace of mind. I'll take it. 

There's always something to smile about lurking around every corner. Like that badass poem that one of you posted in the comments section recently. Man, I felt absolutely not deserving of such praise, but I printed it up anyway. I will be using it as a guide to strive for. So thank you for that - on so many levels.  

Monday, March 16, 2015

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 of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.

Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.

What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.

That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.

There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance,  a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.

Friday, March 13, 2015

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 fried. I'm hazy, and lethargic. Living this life of moderation, limits, structure, analyzation, concern, always trying to keep healthy, keep the tumor at bay, and limit the liability of seizures, has radically changed my daily life, my social life, my career life. 

My brain feels swollen. I can feel the thump thump of blood flow. My eyes are droopy, but I can't sleep.

I realize I should just be resting and not blogging, but I felt like I needed to vent my disappointment and frustration. To not have control over my mind and body is probably the hardest part of my life. It reminds me that I sometimes don't have power - even over the most basic things. I feel disconnected, unable to predict or dictate bodily and mental functions. 

I'm going to try and take the weekend off and rest. We'll see how that goes. For now, I replenish antioxidants, phytocmenics, minerals, vitamins, nutrients, and of course my favorite, healthy fats. 

Tuesday, March 10, 2015

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!


Surviving Terminal Cancer Documentary

Panel Discussion

Monday, March 9, 2015

First Video Post: FDX

I just made my first video post. Talk about awkward. Let's hope I get better at this.....

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