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.

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. :)

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.  

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.

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. 

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

First Video Post: FDX

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

Surviving Terminal Cancer Film

I'm home; I'm slightly rested. I'm not even remotely caught up because I met all kinds of lovely people that are in the crux of diagnosis, or recurrence, and need some help - I have been troubleshooting and redirecting so that people can have research, and resources. There were also many others that I met that just wanted to say hi and graciously thank me for my blog. (Wow.) I am incredibly humbled, and still kind of spinning from it. It's surprising, and really, really cool. What I like about the whole situation is that there are all these people that are taking their health into their hands. They're thinking outside the box, and combining treatments to be more efficacious. They're going to their doctors with research and questions. They're not passive patients. I've mentioned it before, but if you really want to survive a diagnosis of brain cancer (or many cancers for that matter), you have to be drastic, and calculating, and proactive. And meeting so many patients at the premier that are off and running, like a scavenger hunt, making things happen, is thrilling. I see the hope and excitement in front of the fear. And that's incredibly valuable. It's what it takes to move things forward.

Anyway, from the moment I walked into the premier, I was up and running. People were introducing themselves, which was fantastic. It's a very unique, and foreign situation to be in when people know who you are, and are familiar with your story, your thoughts, your personality. It's nice, though. I actually really appreciated it. By them knowing who I am, what I believe, what I stand for, we were able to cut straight to the chase. And aside from that, if they were coming to me to talk, I figured their values about cancer care must be somewhat aligned. I do love directness and cutting out the fluff.

From the whirl of the reception, we were funneled into the auditorium. After that I can't remember what came first, which introductions happened. There were various speakers, including the director, Dominic Hill. He spoke of his drive to create the documentary after his brother-in-law was diagnosed with glioblasoma. The heartbreaking journey he watched, and went through, with his family was the great impetus. He saw so many flaws in the medical establishment, and he stood up, to call out the broken system, by making this film. The most amazing aspect is that Dominic is not a filmmaker. He did this out of passion, and desire. Teaching himself, with the help of a mentor. It's seriously profound what he did. And this documentary can never be taken away, it's out there, it's a creation for thought, for truth.

After the film ended, we jumped directly into the panel. Unfortunately, it was short as we were running out of time at the venue. That part was a disappointment for me. I know that when I first watched the documentary, I was floored. I was flabbergasted. It spoke directly to my heart, my soul. It verified everything I was feeling, which was powerful, but hearing my concerns and gut feelings expressed by the experts, the interviews with the various doctors, it solidified all of my fears, that we're essentially being fleeced in a medical sense. That the medical system isn't set up to cure us, or help us survive. I don't think it's anything malicious, I think it's just the fact that we're working with an outdated, CYA (cover your ass) system. So when I thought about the panel, I was hoping that viewers would be able to ask questions, that we could get into an open dialog with the audience. The panel ended up going a little haywire, a little bit off topic from the movie, but it ended up being fine. I'm going to be out of town for the next week, but after that I'm going to try and do a few web shorts to discuss things from the movie that I found were really powerful, and shocking. I'm hoping that we continue the conversation, perhaps through the comments from the web series. We'll see how it goes. I just want to continue the dialog, and acknowledge the powerful momentum from this movie. In my opinion, it's one of the most wonderful things that has happened in the history of brain cancer. We may be a small group, often unrecognized, and largely misunderstood, but we are officially on the map thanks to Dominic, and whomever privately funded the film, and to those who supported the entire cause - specifically The Brain Tumour Charity.

From Left to Right: Jessica Oldwyn, Andrew Von Eschenbach, MD, John Boockvar, MD, Rich Gerber, PhD, John Lapook MD, Colin Hill, Ben Williams, PhD, Robert Hariri, MD, PhD

A Closer Shot: Jessica Oldwyn, Andrew Von Eschenbach, MD, and  John Boockvar, MD

The most exciting part of this entire post, is that the documentary is now available - at no cost - for viewing!! So you can now watch it if you click this BUTTON, by clicking it you will be redirected. Please, please feel free to come back to this post with thoughts. I want to hear what you think. Or save those thoughts for a week or so when I do my web series, here on the blog. I really want to hear your thoughts, and get a discussion going. At least have a location where we can vent, and get excited, and gain power in numbers.

And when you watch this free streaming movie, this documentary, you'll learn about the upcoming clinical trail for newly diagnosed glioblastoma. It's a multi-agent cocktail of off label, re-purposed, drugs. It's happening in Germany because our FDA clinical trials are single agent studies, which we can now see are clearly elementary in thought and in practice. Cancer is a multi-variable issue, that's why single approaches are failing, and people are dying. Cancer uses multiple pathways, and mutations, and crazy various tricks, I don't even know all the correct terminology, but what I DO know is that we need a cocktail approach to hit cancer on as many levels as possible, and we need to do it strategically. Anyway, I'm going to let the documentary do the talking. New York was a pleasure, and a treat. I was able to spend time with so many brain tumor researchers and survivors and doctors. For the first time on my brain tumor journey I felt at ease. I felt completely comfortable, both at the reception, on the panel, and at at the events following. I was able to have real conversations about the research, and hear about the inner workings of this upcoming clinical trial. It was a gift, and I am incredibly honored.

When Dan and I walked away from the intimate luncheon on the day after the film, a luncheon to discuss the clinical trial, I was giddy, and exuberant. I told Dan that those brains thrill me. Spending time in that arena was the equivalent to someone else's Disneyland, or Paris. I realize it's a poor analogy, since I'm comparing people to places, but it's the excitement, the thrill factor. I love these conversations. I love talking about the research, and the ins and outs of the brain tumor science. I could talk about this stuff all day, every day. And technically, I kind of do, but when it's in a virtual "brain tumor think tank" consisting of top researchers, and doctors, and survivors that are literally on the forefront of change, it is something that I don't take lightly. I use the word, "honor" quite a bit, but the truth is that I am constantly so honored to be a part of this movement (albeit a small one). I have felt blessed throughout this journey, just being able to learn how to read, and speak again, and grow my brain, and now I just feel honored to be capable of trips like this, capable of engaging in events like this. I could have remained simple, and essentially incapable of higher thought. Thank you world, to the Gods, to my support systems, to fate, and luck, and hard work. I love this life, this brain, and I will use it to help others in any way that I can. Perhaps it's true that one person really can make a difference, and when we come together, we really can move mountains. I love you all.

Surviving Terminal Skirts

Holy cow what a night! The Surviving Terminal Cancer documentary premier was so much fun! I had already watched it several times (gaining access because I was on the panel), but the awe factor never goes away.

Of course, this is me, so I couldn't come without a little disaster. As I sat down into the car to head to the Loncoln Center, my skirt split. Literally. Literally all the way from the bottom of my bum to the top of my bum. The most important area to cover. I leaned in to Dan and the driver and said, "I knew I shouldn't have eaten lunch!"

We scrambled for friends to help us troubleshoot, but ultimately, our driver saved the day. He swung through a quick shop, and Dan and I scrambled through the doors. Dan and the employees started throwing skirts at me as I ran for the dressing room. The first one was a raspberry below the knee number. I zipped it up (and it was stretchy - now a must have in my department), and it fit. The girl cut the tags to give to Dan, he went to pay, I finished dressing, and we ran back out the door. It was insane, and hilarious, and it set my blood pressure and my heart racing.

I'll share more when I have time, probably this weekend. The night was inspirational. I was moved by all of the faces of those who I've spoken with only via email, and suddenly there they were. I was able to hug and meet people. Several people thanked both Dan and I for the blog which was an incredible honor, I'm starting to get choked up even as I write this. There is no better feeling than hearing that you helped someone find solice and strength in a time of need. We are all stronger together, and we have the ability to challenge the system and make it better. This is my family, and I will do whatever I can to protect them.

In the insanity of last evening I didn't take more than three pictures, here's photo of my friend Kristina, we had never met face to face before. She's a hard working, out of the box, researching bandit, all in the name of her mothers breast cancer, but she is not a purist, cancer wise. She's all about helping anyone in need. I heard her talking to doctors, offering to help research. She's a badass, full of energy and ideas. Another woman that I admire. The list is really racking up! 

Confidence is Not Cocky

Do you ever do exactly what you want, when you want to do it? To be free? I just left my dirty house, with my unpacked suitcase for NYC, and hopped on my bike for a jaunt around the neighborhood. I caught the final hour or so of sunshine. It was surprisingly nippy out, a great breeze off the ocean frosted my face. My cruiser and I rode donuts around quiet streets, circle after circle, block after block. I didn't care what people thought, even though technically I was a 30 something acting like a kid. A big old kid, and it felt soft, and comfortable, and safe.

 

I am so nervous about the panel. It's one thing to theoretically be on the Surviving Terminal Cancer premier panel, and a whooooole other thing to literally be on it. I've had all kinds of thoughts, thoughts of how I can represent our family of survivors, thrivers, those in treatment, and the missing. The movie discusses people who have been diagnosed with glioblastoma, and anaplastic astrocytoma. Those are stage 4 and stage 3 respectively. I'm just a lowly infiltrating astrocytoma. Granted, I've been around the block and had my fair share of brain surgeries and treatments, but it's different. I somewhat feel under qualified, then I think, shoot, I'm just their little sister. According to the statistics, I will grow into a stage 3, perhaps even jump to a stage 4. I've always been watching and learning from my older sibling's journeys, seeing how they navigate, how they handle things. I look up to them, the Ben Williams, and Anders Ferry, and Rich Gerber, those who are living far past their diagnoses because they took their health into their own hands. They researched, and combined, and strategically cocktailed their way into longevity. They are rock stars, and inspirations, and in my own way, by going so far outside the box always looking for cutting edge treatments refusing to just lay back and die by the joke that is standard of care for brain cancer, I'm honoring those who have gone their own way.

When I was processing the information of joining the panel, I thought about how I always put myself down. I always belittle the blog. I say things like, "Oh me and my silly blog." But why? Why would I play down my years of heart, and knowledge. It's me. This is who I am. I'm sharing my soul. I started thinking, if I was a man in the same position, doing the same thing, would he/me put down his accomplishments? His blog? I don't think so. I think most likely, an average man would just be matter of fact that he writes a brain tumor blog. He probably wouldn't put himself down. Why do girls and women do that? Why do we downplay who we are, what we've done, or what we do? Once I realized the error of my ways, I started working on no longer belittling myself, or my blog. I'm trying to be authentic, and allow myself to feel good about what I do. To acknowledge that it's okay to be proud of this blog, to be proud of myself, to be proud of what I'm trying to do to help others. In order to do that, I had to recognize that feeling good about what you do is not the same as being cocky. You can be confident, and passionate, and do amazing things while still being humble. They are not mutually exclusive. 

Anyway, I'm kind of rambling, but it was a big moment when I realized that fact. That I can be confident and humble, and I don't have to downplay what I'm doing. Even just writing that out feels strong, and real. I am allowing myself to be proud. Wow. This feels good. And foreign. I don't think that me being on the panel makes me any more important than any other person dealing with a brain tumor, but I hope that with my experiences of traveling for doctors and treatments around the globe, I will inspire others to not settle. That we're worth it. That we can demand excellence. That's what I hope to do, just share what I know, what I've done, and allow others to dream big. This doesn't have to end us.

On a side note, a very wonderful man who has been a family friend (we were driven together through the Oldwyn family business a few decades ago) has donated to cover the expense of filming the panel, and he also connected us with the videographer, so the taping of the panel is a go. (Thank you dad for reaching out!) I will check with him before I out his name, on here, but what a gift!! He may never know the full impact of what he has done, but his donation will live on indefinitely as a recorded piece of information for other cancer people that will come after us. I only hope that the information on the panel will be helpful in other people's journeys. All I want to do is help those who are on the same journey, and those who will come after me, get from A to point Z with less bumps then I've had. Let's band together and combine our knowledge, our connections, our drive, and collectively tell cancer to go kick rocks.

Pregnancy and Glioma Don't Mix

I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn't that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable.

When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn't a given, that it would cause me a third tumor, so we could risk it, but it's so scary! It's gambling with my life, I feel like our dream is crushed. So over the past two months - since we researched - we've been absorbing the information, and essentially I've been in a state of grieving. Like I said above, I'm grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it to be - even if I'm healthy. Even if my brain tumors never come back. It's painful, and incredibly sad. I go back and forth between reluctant acceptance, and reminding myself that I am just lucky to be alive. But it's hard, because if I live a long life, and it's without children, what will it look like?

One of the main reasons why I hesitated, and saved this information, is because I didn't think I could handle the obvious statements that I was sure would come. Like the, "You could always adopt." Or "There's a lot of children than need happy homes." Or, "At least you have your life." Of course, those are all the thoughts that I tell myself people could think and say, and that's because I think them and I tell them to myself. And it doesn't change things, or make me feel any better. It actually makes me feel worse.

This panel is the perfect distraction for me. I need other things to think about, a bigger cause. I need to help others, and get out of my own story. Cancer is such a nasty, nasty thief. And just when you think it can take no more, it does.

Here are a couple of studies linking pregnancy with low grade glioma:

"Furthermore, on the basis of these four case reports and other reports from the literature, women with low grade tumors need to be counseled on the risks associated with pregnancy and, more specifically, the potentially increased risk of tumor progression and transformation."
Tumor progression and transformation of low-grade glial tumors associated with pregnancy 

"The present case highlights, for the first time, the unfavorable evolution of DG during pregnancy in six of the eight reported cases. It thus suggests a possible negative interation between pregnancy and supratentenorial hemispheric DG." - Influence of pregnancy in the behavior of diffuse glioma: clinical cases of a French glioma study group (see below)



It was hard for me to write this post, but I felt that it was important for me to share the dangers of pregnancy regarding glioma. I only researched for my type of brain tumor, however in the studies that I read (I only posted two, but there are more if you chose to research further) it referred to other types of brain tumors and it seems as if there's a correlation across the board. Obviously, I'm not saying that brain tumor patients shouldn't get pregnant, however you deserve to know all of the information so that you can make an educated decision. This is, after all, our lives at stake - I mean, good grief, many of these women who became pregnant had evolved grade tumors. Some died within months of childbirth. Risky stuff. Now, I realize that these are all case studies, which make it difficult to assess, since it isn't a clinical trial with a control group. However, it's clear that a clinical trail would be unethical due to the high probability of recurrence and subsequent health risk.

Oh cancer, why do you take so much? You just take, and take, and take, and take. And all the while people look at me and think I'm doing so well, that things are back to normal. They don't see all of the complications, the things that we continue to go through. That it never ends. As if the fear of recurrence, of death, wasn't enough. Man, this life can be a real test in patience, in sanity, of loss, of strength. It's as if we're being asked, how bad do we want to live? Can we overcome all of the trials? Can we stay human, and happy, and functioning, and thriving even when cancer continues to bomb our village? I think I can, but sometimes it's okay to just mourn this life, too.

More Medical Transparency

"Studies show that as many as 94% of doctors report an affiliation with and receive money from drug companies and medical device companies. Though doctors deny these payments influence their decision-making, ample research demonstrate that it does. Many doctors’ salaries also depend on number of procedures done. At a time when 30% of all tests and treatments are unnecessary, patients have a right to know what may be influencing their doctors’ recommendation about their health." 
                                                                                                             - Who's My Doctor

  
This woman gets it - she is exactly the kind of doctor that understands the issues. Exactly the kind of doctor we need to support so that more doctors like her come out of the woodwork. I am amazed by her story, and by the backlash from other doctors. Clearly they feel threatened because it would effect their extra income. She is powerfully inspirational. Although we've never met, she has joined the crew of change; she is creating a new system. Watching her video gave me a surge of excitement, and love. I viscerally love people that care about what's right. That care when things are wrong and they make the effort to fix it, to do all that they can. It's a very beautiful thing.

Here's the TedMed write up about Dr Leana Wen: "Wouldn’t you want to know if your doctor was a paid spokesman for a drug company? Or held personal beliefs incompatible with the treatment you want? Right now, in the US at least, your doctor simply doesn’t have to tell you about that. And when physician Leana Wen asked her fellow doctors to open up, the reaction she got was … unsettling."

I still can't believe that doctors in the US don't have to admit who they're getting payouts from. It's disgusting. It should be criminal. It feels dirty. We need transparency, and I very much appreciate a doctor that is willing to call out a flawed system! Personally, I want to know why my doctor is recommending a specific treatment, surgery, device, scan or medication, or if there's a conflict of interest. The only way things will change is if we put in the effort and demand it. Or we support those who are willing to stick their necks out. I can't take on all of the causes, but I can certainly promote those I believe in. If this is a cause you believe in, here's a link for more information: Who's My Doctor

Just a Bird

You know what I love? This guy...

...it's stephen from http://astrocytomaoptions.com! How fun is that! He came for a visit. There are so many things that I'm grateful for that I would never have experienced without this brain tumor diagnosis - like wonderful new friends.

Spending time with Stephen was a blast. We're different, but have such similar views on many, many things - most things in fact. We laugh, and talk about the research, and scheme, and theorize on off-label drugs. We talk about life; we talk about everything. It's exciting, and hopeful, and it feels right to be taking matters into our own hands. I am incredibly grateful to be living in this new advancing era of brain tumor science. I'm just a bird riding the wave, but to be near the ship leading the research, to be near the captains, and the explorers of the field, is such a treat, and a joy, and gift. 

We have a disadvantage, usually, in brain cancer because the blood-brain barrier prevents chemotherapies, and other drugs, from infiltrating tumor cells. Also, we are such a minute group compared to the majority of other cancers, which gives us far less funding and research. However, perhaps those disadvantages could become advantageous. Perhaps the degree of difficulty could be intriguing to doctors and scientists and philanthropists and curious people alike. Perhaps the lack of funding could cause an underdog mentality, where people want to help us. It could be that because we're such a small group, that maybe we could be easier to study, to track our cases, our pathologies, our success stories. Whatever it is, I feel hope. I feel like big things are coming with the premier of Surviving Terminal Cancer (http://www.survivingterminalcancer.com). We are on the cusp of change, and I for one am very excited to be on this side of history.

Surviving Terminal Cancer

I am trying to pull myself together after watching the upcoming documentary, Surviving Terminal Cancer. Remember when I posted the trailer a few weeks ago? Its about the failures, the downfalls and the possibilities of treating brain cancer. How we have to blaze our own trails because of the broken system. I was able to preview the documentary because I was asked to attend the premier at the Lincoln Center in New York, and join the panel that follows the viewing.


Other panel members include:

Chair: John Lapook, MD (CBS)

Andrew Von Eschenbach, MD (ex FDA, ex NCI director)

Robert Hariri, MD, PhD (Celgene)

Ben Williams PhD (20 year GBM survivor)

John Boockvar, MD (Lenox Hill Hospital)

Colin Hill (GNS Healthcare)

Me

 

I'm thrilled, and somewhat stupefied, about the entire thing. I'm excited to be a part of this movement to demand change, to acknowledge the issues in our care, the issues in the system. I am slightly intimidated by my highly educated co-panel members, but as you know I am passionate and have quite a bit to say about the brain tumor system. 

The free premier is on February 18th, a Wednesday. (There is also a London premier on Feb 4th for those across the pond). The reception begins at 6:00 pm, the showing begins at 7:00 pm, and the panel will follow the documentary. As I mentioned above, it's being held at the Lincoln Center (Walter Reade Theater). Also, there isn't a budget for a videographer to record and stream the panel, and I'm hoping to find a way to at minimum record the discussion and questions. I feel like it's very important to get the discussion documented for historical purposes, and to continue the momentum of change, to keep brain tumor fighters in the know. I've already gained permission by Dominic Hill, the producer/writer/director to record the panel, so if any of you have friends, or family, in the NYC area that have a videography background that would be willing to donate their time, and equipment, to record the panel it would be amazing! I realize it's a long shot, but it would be a profound gift. This is how we demand change, by spreading the word and working together. We know that the current treatments don't save our lives, but it doesn't have to be that way. 

 

The charity couldn't afford to pay my travel and lodging, or any expenses for that matter, to NYC, but Dan and I felt that this opportunity was too powerful to pass up. Do you ever feel like you can't afford to do something, but in the same vein you can't afford not to? That is why both Dan and I will be flying to New York, and why we will be a part of this movement. I want change, I want to save lives, I want to stand up and be a part of the solution, even if it's difficult. Sometimes it takes risks, and sacrifice in order to help. This was never meant to be our whole lives, it was never meant to be a life purpose, but I feel like it chose me. And I know I can help. I know I can be a catalyst to redefine the brain cancer journey. Thank you to all of the people along the way that have helped pay for flights at times, donated air miles, or donated toward my treatments. Thank you for your love and your support, you have helped keep me alive, and you are the reason why I know I have to do this.

You have paid it forward to me, and now I will continue on in the same spirit. This is one hell of an opportunity. Seriously, how did I get this fortunate!?! I gotta go pinch myself...

Our First Home

We fell into a little piece of heaven on Earth. Literally. Dan and I have moved. And it's a little home, that we own, that is magically cheaper than renting in Seattle - and trust me we were renting on the cheap. What a blessing. Dan and I keep pinching ourselves, between smiles and embraces we say things like, "How did we get so lucky?" "Why do we get to live this beautiful life?"

I used to feel like I had to be in Seattle, in the city, the epicenter, to be functioning. I needed the metro, the walkability, the mobility on my bike - all my friends were there, and I can't drive very far. But as Seattle continues to boom, and expand, and explode, the prices and the cost of living was an uphill battle. We were struggling to maintain, and with an ever present fear of a recurrence and the expense of current ongoing treatments, we started exploring other places to live. We considered the Washington peninsula, we looked at Camano (I refuse to call it an island since it doesn't require a ferry), we looked all over the north coast of the state, and eventually we found our perfect little spot. Edmonds. If you're not familiar with the area, or the state, Edmonds is a little seaside community just 25 minutes north of downtown Seattle.

When our mail person, Michelle found out we were moving, and we told her where we were headed, she laughed, cocked her face and said, "Are you retiring?" That's the reputation of Edmonds, that it's full of blue-hairs. But as you know me and my retirement home volunteering ways, it was one of the many things that drew us in. There's still a PCC, our local co-op grocery store that I love so dearly. We have a lovely dog park right on the water, full of sandy beach, and dog obstacle courses which Emma loves. There's a train that takes you directly into the city in one stop. Talk about an upgrade, from bus to train! (And it's the same price.) The whole town has a speed cap of about 30 miles per hour which is rarely met since no one is in a hurry - practically everyone's retired. It's the perfect place for me to drive. It's the perfect place for me to rest, to find my zen, to heal, and thrive. Our little house is less than a 10 minute walk to a hidden beach. Everywhere you go there's views of the Olympic mountains, and the emerald waters of Puget Sound. When you fill your lungs, each breath feeds you with salty ocean air. For an island girl and an island boy, it's as close as we can come to home.

I can't believe we have a home. And it has double paned windows! It's unfathomable how warm we now are; we're no longer cold to the bone. We have a tub for bathing, what a luxury! I can't wait for spring, to plant a jungle of a garden, to feed our bodies and our souls. I've joined a Monday morning writing group at the public library, and well over half have published at least one book. They're inspirational, and confident. I walk around downtown and visit with the shopkeepers, all but one so far have been family owned. It's a dream. But it's not. This is real, and it's ours; we're a part of it, and I am so grateful. Life keeps evolving, and you never know where it's going to take you. Just a few months ago we never thought we could afford a home, and continue my treatments at the same time. But when you expand your view, and reevaluate your goals and dreams, sometimes you surprise yourself. It's not as easy to see friends, but we keep in touch just the same. I'm looking out our living room window at the old growth pines across the street as they sway in the misty air and I'm filled with relief, and pure joy. Even through the troubles, and the heartache, and fear, I'm constantly reminded of our fortune. It's something I will never forget because I wear it. It's tattooed on my heart, on my soul.

[Weed] [Dope] Smoothie

I just created my first marijuana smoothie!(I'm such a nerd, I should probably call it weed or dope.)

It's absolutely delicious!! I used a little less than half a green apple, a large handful of marijuana leaves, and a handful of salad greens in water. It tastes minty, and fresh. And although, because it isn't heated, there are no psychoactive effects I still felt a slow wave of calm roll over me. It was wonderful. The acid (raw) forms of THC and CBD are supposed to help with inflammation, nausea, muscle spasms, and tons of other things, even anecdotal stories of it fighting tumors and cancer. And it's just like eating lettuce, or basil. It's fantastic! 

You guys know I love greens, and plants, and this is right up my alley. I am very grateful to have these fresh leaves, I wish I could afford enough, or have the space and privacy to grow forests full, so that I could eat a smoothie or two per day. I can only imagine how wonderful I would feel! For now I'm happy for what I've got. 

Yum.

Survivor Problems

Oh you guys it's so weird. There is this thing that I am realizing that many cancer patients go through. They have aggressive bouts of exhaustion, then they get depressed that they're not out doing things, not conquering the world. One of my beautiful camp buddies posted a dark photo of herself in the cavern of her bed. Her hair was mussed, her face pained. She was berating herself because she isn't as productive, and accomplishing as she was precancer, prediagnosis. Now this badass girl, I am not exaggerating, has had more cancers/medical issues, more surgeries/treatments/etc. than most humans will in their lifetime. The girl has been pin-cushioned, poisoned in the name of survival. She is a force, one of the largest personalities I know. I remember just watching her emitting her fearless vibes, her mastery of the rocks, the confidence in her soul, and when I saw her recent Instagram, my heart ripped for her. It still brings swells to my eyes. I had no idea how much this overwhelming exhaustion, and self doubt permeates the cancer world. It seems crazy when I look her, so obvious that she's being too hard on herself, but also I can relate perfectly. It's something I live everyday. It's so frustrating for us. And it's impossible to explain because we don't understand it either. We can't understand why our bodies and minds won't just do what we want. Is it all the cutting? The toxins, and foreign substances that have cursed through our veins? We don't know, but instead of just being patient with our bodies and our situations, we get sick of it. We get sick of being sidelined, sick of not being able to be the person we want to be, the person we once were, the person we should have been before everything changed, before it was taken away. I realize, conceptually, that I may never have the same energy, that I may be riddled with bouts of bedridden exhaustion, almost a depression or sadness, but I can't stop hoping that it will get better, that one day I will wake up and realize that I'm healed. That I'm back for good. Completely. Until then, I hope and pray that it gets better, because I know we're never going to give up and just allow ourselves to be ruined by this.

Know My Limits

You guys are so patient with me. Thank you so much! 

I hung out with a buddy this morning, and it was so refreshing! And fulfilling. There are people that just get you, that make you laugh, and understand your trials, and it's priceless. With her help, I am coming to the realization that if I take care of myself (just like you guys said - you are so smart!), I won't get worn down. That if I don't take time out each day, I will drown. That this life alone is a lot, tack on a brain tumor trial, then tack on putting your story out there online, then tack on helping people that come to you for advice, then helping others research their cancers. It's taxing, but no one is trying to tax me, it's me putting it on myself. It is my responsibility to know my limits, it's my responsibility to express that, and let others know if I'm overwhelmed. People aren't mind readers. Next time, my goal is to not get this worn down, to not let it get to this point. 

It was hard to get out for a walk today, it had been weeks, but I reminded myself that I just have to put one foot in front of the other. Little by little, before I knew it, I was walking out the door. And it's all part of taking care of myself. I had been treating exercise/meditation like a luxury, not a necessity. This is my health, it has to be a priority. (Say and repeat and maybe it'll sink in.)

Thanks again guys, I really appreciate your insight, and kindness. I can't imagine what my life would be like without all of your love, and friendship. 

What's good for me is good for whomever is around me, didn't you guys say that?

Please Forgive Me

Sometimes I wonder what the hell I've done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don't see is that I get so tired. I get these brain flu episodes. I can't explain it; I can't anticipate it. When I don't feel well, when I can't get my brain to unfuzz, I don't blog. I don't complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I'm missing healthy brain tissue, tissue that I'm sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they're only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I'm known for not putting things off, but there's a fine line between putting things off and not being an alarmist. In the meantime I'll focus more on diet, lowering inflammation, and regular exercise, and meditation, and prayer, and rest.

I'm wondering if a portion of it is stress, these issues, or the majority for that matter. Another thing that I don't tend to write about is that I get contacted daily via email, text, phone, by other friends with cancer, and also several times a day new people find me. Right now two of my closest cancer friends just found further metastasizes. And that was just in the past 24 hours. Those two girls, along with another of my closest friends who also has active stage 4 cancer, need me. And I adore them. I love them. Then I get other people that need help and direction, and I'm happy to do so; those emails are a joy. I want to help people survive, but then I get other emails, so so so many of these emails, of people that don't tell their husbands, their parents, their siblings, their children, that they are battling cancers, and tumors, or diseases, and they come to me for camaraderie, and to vent, and to find a source of support. But the thing is that I am only one person, and I am already exhausted, and scared, and trying to remain healthy. Stack on top of that, my friends whom I adore, whom I want to save, whom I want to cure, whom I want to be around for decades and decades. I want them to be around for a lifetime. And I'm virtually helpless. I'm stuck here. I'm just me. I research for them, I brainstorm, but it's not enough. I want to do more. I want to be there. I want to take it away from them. I want to be the superhero that snags the ticking time bomb of cancer and flies it away at supersonic speeds to another galaxy, returning in the nick of time so that we can all be saved. (Sorry neighbor aliens.)

I want to help everyone. I want to give you strength, but each time I give my strength I have to be replenished too. I can not continuously give. I can not be everyone's rock. From the time I was young I have internalized other people's plights. I was one of those kids who would cry for starving children. When I read your emails, when I hear people's fear, I feel it. I can not live removed. So what I have to say right now is that I am asking those of you who reach out (and as you read this please know that there are tens of people daily, this is not singled at any two or three people) and are carrying the burden in the dark to open up to your friends, and family. Not only will you need that strength and love and support, but also, as my dad recently reminded me, it makes them feel better to be a part of the journey. They appreciate being involved. They want to help us. Of course, you don't have to do anything you don't want, but I guess this is my cry to you, I can not carry everyone else's burden. I can carry a few, but this is not normal stresses. This is life and death, and my friends are a high need group, and in order for me to be a good friend, and be able to handle the reality and research and emotional support to help them, I have to focus and know my limits.

I feel horribly guilty that I can't be everyone's friend, that I can't have relationships with everyone who reaches out. I hear the fear in your voices. I feel what you feel. I want to help. I want to fix. I am so sorry that I can't do it all. I'm so sorry that you're going through this. Even though I'm writing all of this, I hope that you still feel comfortable reaching out if you have direct questions. I really appreciate it when they're short. It's especially the long emails that get me. It takes so long for me to read and think and analyze - it zaps me. I am incredibly capable, but I have limitations, and I have to be able to triage. I can't be attached to my computer and phone all day, it isn't healthy. And the subject matter is so heavy, so dense, so dark.

I'm sorry that I had to post this message. There is nothing more that I want than to help, but I am only one woman. And I'm not trained for this. I'm not built for this. And my heart, which thankfully is quite large (probably big like my huge noggin), is reeling. It is deeply bruised, and hurting for my two First Descents camp friends who have had such horrible news. Fucking cancer.

I'll leave you with this quick video, it's about angiogenesis and cancer. There aren't any great anti-angiogenesis drugs for brain cancer that will cure, but don't forget that food does matter. We can eat things just because we're hungry, or because it makes us feel temporarily better, or we can make our food serve a purpose, to make it count. There are all these little things that we can read up on and learn about to take charge. I'm not trying to imply that diet is enough. I'm only imploring you to get curious, read up, research, Google stuff, and find what empowers you. There are so many times with cancer when we feel helpless, and scared, but there are actions that can help. Never give up. You are capable just within yourself. In any moment you can make choices to change. It's all in you.