Brain Tumor Movie: Volunteers

Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren't familiar you'll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com)

In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.




I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)

People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.

I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.

I'm sorry I can't do more. I feel horrible about this. 

A Letter to Joe Biden

I just received an email from a brain tumor caregiver about a post he wrote and it is the most eloquent explanation as to why our clinical trial system is failing us as patients. He precisely explains everything I think, and exactly how I feel. It needs no further introduction.

If you haven't seen Surviving Terminal Cancer the documentary, as he references in the letter, please, please click to see it: WATCH THE DOCUMENTARY HERE. And Logan, you are a rockstar! Thank you!



Patients, people, are dying! Until we find a way (and I'm guilty of not figuring out how of solve this problem) to take control of the system of how we treat brain cancer, we will continue to die at a 99% death rate. I may not be a good organizer, but I am willing to do whatever I can to get the message out. To work for the cause in a meaningful way. There is so much money wasted on things that don't help us right now, in this moment. I'm sick of wasting money on awareness, on talk. We need to push legislation through to give patients the opportunity to try promising drugs and treatments. We are given no hope, because the things that could help us are tied up in bureaucracy and it will take years even decades to have access. And during that process, many treatments get dropped because they won't make enough money - not because they don't have efficacy.

I am sharing this Letter to Joe Biden to help spread the word of Logan Lo, about his courageous wife. I don't know how to do it, but we need to mobilize the brain cancer movement in order to gain traction. The AIDS activism, with ACT UP, effectively stopped the requirement of Phase 3 trials for AIDS cocktails, getting the drugs to patients immediately.

Nothing will change until we take our frustration, our fear, and anger, and start being heard. We need the equivalent of the Day of Desperation.

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.

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...