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.