UCLA Tumor Board Update

Friday Friday Friday. No results from the tumor board yet. I'm excited for a few days to pretend everything's normal, Dan's still on the fence about it being a good thing. Bet I can tease a toothy smile out of him yet, though!

A photo posted by @jessica_oldwyn on Oct 21, 2016 at 6:13pm PDT

Introduction to My YouTube Vlog

I'm getting lazy in my old age, and resorting to video blogs to keep in touch.

Okay, I was just cracking a joke, but truth is, I'm having a harder and harder time expressing myself with written words. I can't even think straight these days. I'm truly bone tired, and that's why I barely write anymore.

Please note: My YouTube channel will have all the videos, but the BLOG will have all the various posts: video, written, guest, etc.

Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

Abbreviated 18f-DOPA PET Results

It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.

Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.

Early Call

With a 1:30 am wake up call, I'm in bed and it's just past seven. It was easy to head to bed since I can't eat much anyway because of scan restrictions. No dairy, legumes, animal proteins, nuts, seeds, soy products - I can't even remember all the restrictions so I focused on what I could eat, which is fruit and veg. I'm not hungry though, just physically exhausted. I can barely keep my eyes open because last night's sleep was terrible - wide awake until 3:00 am.

I had been fine for the last few weeks, my mental state has been a solid 8-10, but last night it hit me. It was inescapable. We have a scan in the morning that will show, with more than a 80% accuracy between necrosis, and recurrence or scar tissue. It's a brilliant tool to have, but one that leaves little doubt, and really no denial either. At first, I thought this could go two ways. Tumor or no tumor. Then I started reminding myself that I won't die of this tumor tomorrow, or next week, or even, heaven forbid this year. We're playing the long game. It's exhausting, but as you get to know the strategies, and learn from others, there are hundreds of thousands, maybe millions of different combinations of treatments. I'm certainly not at the end of my rope, even though, sometimes it feels that way. 

I don't really want to do the scan because I don't want to have brain cancer, but since I do, I might as well get some answers. I have no expectations; I have no premonitions. I have hopes that this blob has a maxSUV of under 3.0 (which to my understanding will not be considered recurrence), but there are factors out of our control, variables that I can't even pinpoint. 

So here I lay in bed, hoping for a quiet power. I hope for strength to get me through the days ahead. I will allow myself to laugh and have fun, even though on the inside I might feel like crying. If needed, I will permit myself that indulgence too. I hope for my friends that they are safe, and in this exact moment, are smiling. 

Results will be Monday, I will try to post them as soon as I am able. Thank you for the continued love, it's much appreciated, but above that it's needed too. Sometimes I can literally feel the hum of people's energy, and who knows maybe I'm just crazy, but I think it's real. 

UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There's a venus abnormality that they've been watching, but I'm not too concerned about it.

All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I've been eating horribly, including a 20 lb weight gain - pure sugar. I've always equated excess calories as food for the tumor so the fact that there isn't obvious tumor growth is a freaking miracle. Apparently diet isn't the end-all-be-all of cancer growth. (I'm sure it matters, but who knows how much, and for which cancers, and which people?)

I'm obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it's fun, not because I'm scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being "heathy", even though cancer has taken so much from me. From us. 

It's really hard to be fearless in this situation, and very hard to not get stuck. It's time for me to stop punishing myself for success, for my good fortune and hard work. I don't know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place, I realize it, but it's there nonetheless. 

On Wednesday, through the help of a girlfriend, I was able to take my nephew KC to We Day (http://www.weday.com) where I watched thousands of seventh grade world changers. The kids are fearless, they're kind, they're big thinkers and problem solvers. I'm going to try to harness their spirit and attitude to get outside of myself. When I get in a rut, when I feel paralyzed, I need to remind myself to find inspiration. It always helps. For being an extrovert, I can certainly disappear from friends, from family, I can get scared, and filled with denial and avoidance, and that's fine from time to time, but if we don't look out, and see what's around us, who needs help, how you can have a positive impact on those around you, then what's the point. 

I'm just really relieved about this first set of results, and grateful that I didn't shoot myself in the foot with diet and lifestyle choices. One of the saddest things that we can do in life is give up, or take our health for granted. I'm embarrassed to say that I feel like I kind of had. But not any longer. There's probably a fine line  between giving up and enjoying yourself, and one of these days I'm sure I'll figure it out.

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. 

Cancer Convos: Episode 2 Fertility

I have been dragging my feet a little bit on posting Episode 2 of Cancer Convos with Crush & Coconuts, for two reasons:

1. We recorded the episode 45 minutes after a seizure that really wiped me out, so my drugged up and exhausted state is cringeworthy.

2. It's a very personal, very raw video that is clearly difficult for me to open up out. As you know I emote, and share in written form - to expose myself in a video is much more intimidating. There's no way to hide your face, the tone of your voice, the tears.

I don't even remember recording, as I blackout after seizures, usually not remembering anything for at least 24 hours afterward so essentially, I'm watching this new with you. Without further adiau, please enjoy our experiences with fertility as it concerns with cancer.

And as always, if you have anything to add, please post comments so that others can learn from your experience. I always love comments on my blog posts, but I imagine the most beneficial place would be on the YouTube channel episode. Thank you for watching! :)

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.

Last Chance

What if today was your last chance? That's the question I ruminated over on the 31st, as I ran a last minute, last chance, half marathon with my buddy Jules. I hadn't trained, but you guys know me - I'm always up for a challenge, and I'm not great at longterm planning. Jules had come up with an idea, a dare if you will, to run a half marathon every month for 2016. But of course, 12 half marathons in 12 months wasn't enough, we had to do a pre-half marathon, a literal last minute half marathon on the final day of 2015.

My longest run in the past year has been around 3 miles. A half marathon is 13.1 miles. A gross difference.

With my track record of race mishaps, this one was no exception. In fact, if I made New Year resolutions, it would be to pay closer attention at races. So, of course Jules and I needed to use the bathroom before we took off for the race, so as others were stretching, jogging in place, and getting ready for the start, we trailed the end of the bathroom line. As the line was halfway through, the race started. By the time we made it out of the stalls, everyone had taken off. So when we started running, we didn't know which direction to head. My instincts in these races are solid 100% off, knowing that, you can guess that we ran in exactly the opposite direction of the path. By the time we figured out where to go and redirected, we were 15-20 minutes late from the starting gun.

It was 21 degrees, and icy in Bellingham, and I hadn't been running outside at all, but the second my legs started moving, I was bouncing and excited. There's this thrilling feeling I get when I run, especially when I'm in a competition. And what I learned is that the best place to start a race is from behind because you never get passed.

While I ran for that 2.5 hours (or 2.3 if you deduct our bathroom and detour incident) I had plenty of time to look out at the beauty that is the PNW. I also had plenty of time to think about my life, my health, my love for Dan, my love for my family, and friends, and the gratitude I have to be here on Earth, spending time learning, and laughing, and exploring. I know that sounds cheesy, I mean it IS cheesy, but it's also truth. Reflection is a powerful, helpful guide that reminds me of all the interesting things I've been able to accomplish, the trials I've gone through, and how fortunate I am to be in the state that I am in now. Sometimes I forget how healthy I am because I get scared by the ins and outs of treatments, of the routine MRIs - the reality of the state that I live in. I'm always trying to be present, but in each moment I feel the weight of a lead shoe waiting to drop. I know it can change in an instant, and that there is a big old blob in my brain that doctors expect will kill me.

As I ran, I kept thinking about what if this was my last day on Earth, what if this was the last time I could run, what if this was the last year of my life, what if this was the last time [fill in the blank]. Would I do anything different? Just the title of the race "Last Chance", was tantalizingly provoking. The combination of endorphins and the tease of theory, of philosophy, of desire, and potential loss, washed over me in a deep cleansing.

Since the 31st I have been crippled with soreness, with pain, but it feels glorious to be alive and although I will most certainly be training for the next 12 half marathons of 2016, I will ride that pain to every finish line in honor of my brain tumor comrades who will never have the luxury.

Bacteria on the Brain Article

Holy cow this is amazing! One of my buddies sent me this article, probably knowing that not only do I love hearing about brain cancer/tumor treatments, but also I am enthralled with bacteria and viruses and how they can relate to cancer growth and treatment. If I ever have to have a fourth brain surgery, I want my brain flap soaked in Enterobacter aerogenes too - and what a surgeon! Dang. A true doctor, and true healer. I love problem solvers.

If you have any problems viewing this amazing article please click here: Bacteria on the Brain.

Impending MRI Impending Life

I don't want to share this. I don't want to say it. I hate that I have to release, but the truth is that I can't handle my feelings. I have best friends, and I know that they would do anything for me. They know that I hurt, but they don't know my pain because I can't tell anyone, not even them. I've never told anyone how I badly I hurt. The pain of this, the diagnosis, the hamster wheel I live on. I give pieces to Dan, to my mom, to my dad, but if I gave any one person my whole sadness, it would be the meanest gift, and I refuse. Yet here I am, I can't stand it anymore. But it's a choice to read; close the window if it's too much.

I would rather cry alone, than burden my friends. I would rather hurt, and sob, by myself, because my friends have their own lives. No one's life is easy. It has taken me years to understand that, but I get it now. I'm a ghost that is here, but that doesn't live. People see me, or my hologram, but they don't know me. I just float.

I was meant to be a mother. I was meant to be a mom. What is my life without that? I found the most kind, handsome, generous, thoughtful, fantastic, man, but he always expected a family too. But now he worries about me. ME. He should have kids by now, he should have that beautiful love from his own children, that sticky snot filled, accidental wet bed, picky eating life, and I can't give that to him. And what is a life without children? Seriously, to those of you who read this, can you imagine your life without your kids? 

That is the life I live every day, that deep sadness. A life where I try to trick myself into happiness. "Hooray, I'm alive." And yes, of course, I should be happy that I'm alive, but what is this? I'm helping other people function in their own families. I'm helping mothers and fathers, born and unborn, and I have become this au pair for cancer patients, for cancer families, yet here I am, unable to have my own life. I hang on the edge of despair, worrying about my cancer friends, but I need to take care of myself and I hate that I can't compartmentalize. But I can't. So I just live sad. I live on anti-anxiety pills. I wonder how I'm even supposed to help because I'm nothing special, just a talker. I'm a not a specialist. I'm not a doctor. 

I've devoted myself so fully to help others, but I need to start focusing on what it means to be 35, without children, barely able to pay for our cancer treatments. I am an educated woman, with degrees, but I bought into what the doctors said about the fact that I would die immanently. So I've been in a mad dash to help others survive, but how am I going to live long term with my treatment responsibilities? I can't just take care of everyone else. And, how do I live my own life? And how do I make Danny's dreams come true? I feel so responsible. I feel overwhelmed. I feel sad. And I wonder what the point of this life is. I have watched others die for various reasons and its all confusing and messed up and it had nothing to do with working hard, or being a good person. I am not here right now because I'm somehow significantly better than anyone else on earth. 

So I just do my best. But what do you do when you know you can't give your husband children. That you've just isolated him. Danny should not be an old man without a family. Without children. Without that special, magical love. So yes, I am alive. I'm alive longer than I technically should have been, but, is this the life I would want for him? Never.

Here I am being grossly honest, and confused. What shall I do with my life? What will I be if not a mother? My heart breaks every day. I cry every day, whether its internal or literal. The worst thing is making others feel uncomfortable, so I try to hide it, dsguise my pain.

But it's the truth. And it hurts me to be real, but I will know in two weeks if my brain tumor is growing again or not, and sometimes I wonder, when I feel this despair, will it really matter? In the sliding door of life, what would be best for Dan?

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.

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

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...

Change is Coming

We are on the cusp of serious changes in the brain cancer world. Serious changes!! I can't even believe how fortunate I am to have been diagnosed during this time. Imagine, the first fMRI (a scan to navigate the brain before surgery so that doctors can avoid healthy systems and only cut out tumor tissue) was in the early 1990's. Eeeek! I'm 10 years older than the fMRI. Yikes!! If I wouldn't have had an fMRI for my first brain tumor resection, I could have come out with the permanent loss of my speech, and motor movement. Holy cow would I be a different person. A lifetime in a wheelchair? A permanent inability to speak? A permanent inability to read and process language/speech? In ability to communicate? Would I have essentially been a vegetable? Ugh. That makes me feel viscerally ill, then immediately relieved. Thank you for those who have blazed before me. And now, it is my duty to help others who may come in my path.

I can't share the super secret details about this new badass cancer fighting company out of San Francisco until it launches in February, but please know that things are about to change. This is going to blow your minds. I'm not saying this to be a jerk, or to just dangle my secret, I'm saying it because it's going to bring more hope and save more lives than anything I've ever witnessed regarding cancer care.

If you're dealing with brain cancer, you know that not much has changed in treatment for decades and decades and decades. Why? We know, YOU know that so many things can help fight cancer, and yet brain cancer has a horrible cure rate - in fact almost all cancers have a horrible cure rate. Why is that? We know that it isn't because there aren't things that work. Is it because it's hard to institute change? Because it takes forever for clinical trials to complete? Is it because clinical trials usually only use one treatment, when it's clear that to fight cancer you need to have multiple cancer fighting modalities? From my own research, and now for the past year with astrocytomaoptions.com's research, I know that there are all kinds of things that fight brain tumors. But why is it that the research is published, yet not instituted? And why don't we hear about it? Why aren't doctors familiar with what works? With off-label drugs, and diet, and nutrition, and clinical research? And meanwhile people are dying. They're DYING. For whatever reason that they don't help us, be it their fault or not, it's unacceptable. And the only way that things will change is if we institute change ourselves. Reference the fight against HIV/AIDS. They demanded change. They marched for it. They screamed at the top of their lungs because people were dying. Why aren't we doing that? Why aren't we pissed?! Oh wait, we are pissed, but it's complicated. We're tired. We're confused. Our disease afflicts our brains, our epicenters. It effects our energy, and our thought processes, our reasoning, and our logic centers - it's different for everyone, but ultimately, it makes it very hard. We don't know how to make the change that we want to see. But for the first time, I just caught a glimpse of hope about a new system of treatment, and it's going to be public in February, along with the trailer for a new documentary about brain cancer, featuring Ben Williams, PhD., also available in February. (If you're not familiar with his amazing story click HERE.)

I hope this trailer excites you as much as it did for me. Complete goosebumps. And I hope it ignites a fire. Everything is culminating in February, it's all coming together. It's time to take charge, and start demanding change, and I can't believe I'm alive, and part of this movement. Albeit a small part, but still a part. Please let me know what you think about the movie.

Enjoy. (Click image.)

Out of The Shadows

Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can't I be fearless? Why didn't I just start talking about it from the beginning? That way there wouldn't be a buildup. I avoided it because I didn't want to deal with people's opinions. I hate bringing up controversial subjects (unless it's face-to-face where there's an open dialog), and I hate to be judged - which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors.

I've been dragging my feet because I don't know where to start. And there are so many details as to what helped me make my decision. I know that I can't include them all because it would be exhausting, and verbose, and complicated. I'm nervous because I feel like I'm not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It's hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There's a lot of names out there, and they're not all exactly the same, but they're pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they're still getting results.

Does it work for everyone? Unfortunately not. But, as a person who lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.

I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)

When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.

I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.

Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:

I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.

I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.

I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.


Here are a few teasers, but please do your own research and decide what you think.

Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/

Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196

Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full

"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62

Flipping The Switch

Oh you guys, it's almost here, we should know tomorrow about whether or not UCLA believes I'm "stable" or whether they'll want me to fly down for another Dopa PET. This is such a weird life, just saying those words. Do you ever find yourself stopping your gait, turning your chin up to face the sky, and just smiling with pure joy about how magical life is? I can't explain it that in this moment, this moment of uncertainty about the direction of my life, I find it amazing how deeply my soul is constantly overflowing with gratitude, and happiness, and wonderment. Half the time I just laugh at myself, at how annoyingly happy I am. It's absolutely ridiculous, yet I love it because I know what the alternative would be. I'm still logical, and analytical, and I still have bad days, or bad moments, but somehow I have a serious constant influx of endorphins.

Even though I can't really explain it, I do know that this inner joy, this ability to find silver linings in even the most dull, dark places, is the biggest gift the world has given me. I wish it was something I could bottle, wrap with a bow, and give as gifts. I hadn't really thought about whether or not my attitude is "normal" for a person with my diagnosis until I kept getting private emails from patient's families and friends, from people worried about brain tumor fighters who want to give up, are depressed, or are riddled with grief. Some have more progressive disease, others have less, but ultimately it doesn't matter how serious a situation is, because the power comes from whether or not it debilitates that person.

It hurts me physically when I hear each story, because I know that there is nothing I can do. I try to share my story, or give tips on how I trick myself into being happy even when I'm scared, but ultimately, happiness will always come from within. No one else can fix it. I've had my share of terrible times, and of course I've already had one recurrence, but instead of that overwhelming me, or derailing me, I used it to get stronger, to encourage myself. I used it as ammo. It's those silver linings that keep you going, that trick you into trying. Like this morning, I fried up two eggs for breakfast, and just the little detail of using my mom's old orange enameled cast iron skillet - her favorite, that she passed down - reminded me all about what my mom has given me, everything she has done, and continues to do. I think about the last time she hugged me, the last time she and I laughed together. In a series of seconds I'm filled with love, and it's escalating, it's like a catapult. I'm engulfed in gratefulness, for my life, for the gift of resilience, for the gift to be here on Earth, for the gift to experience all of this beauty, and love. It's easy for me to be happy, it's a place I go to often, I know the path by heart.

Was I always this way? Was it always this easy? No, it hasn't been. I've been depressed before - even needing anti-depressants, but it was long before diagnosis. But from the moment I was slapped in the face with the news of my brain tumor, life instantly became "real" and I internalized the fact that this isn't a trial run. This is it. This is all we've got. We've got this one life, and in any moment we can decide how we choose to interpret what's happening around us. We have the choice to be whomever we want to be. And we can choose how to best handle each situation. Those facts, the facts that we have great control over how we view the world gives me great strength. It flipped a switch in me, and I am so glad it did. Now I just want to love people, and laugh, and have great conversations, and hug people, and help others in any way that I can. (God, am I just obnoxious?)

I don't know why I'm so fortunate in life, or why I'm still here - a lucky one. I don't know how I became so blessed with all the wonderful people in my life, but I don't take it for granted for a single second. I know it can all be taken away in an instant.

Okay, I'm off to work more on an art piece for friend....

Orthoexia? What!

Holy. Cow. I have borderline orthorexia. 

It's an actual thing. 

I was watching the news this morning and a story came on about a girl who went vegan and about a year into it she realized that she would stand in front of the fridge for 20 minutes, overanalyzing her food choices, afraid to make a decision. She was obsessed with picking the healthiest choice (the definition of orthorexia). Hearing her story was like looking into the mirror. The girl became malnourished, having an extreme case of the disorder. I would consider myself more borderline, but the truth is, my obsession with food has lead me to become weak, have more seizures, limited my activities, and has isolated me from social settings. It has been too much. My relationship with food has become unhealthy. 

The tricky part, is that in the case of cancer many people say that their extreme food choices (orthorexia) saved their life. That it stopped their tumor growth, or even healed them. Of course, as with everything, there's a fine line, but I'm realizing for me personally, I've crossed it. Analyzing food has been all encompassing. Food has come to signify life or death. It has become my god and my devil. 

This realization, of orthorexia, comes just several days after making the choice to stop being so restrictive. I have stopped checking macronutrients (even though I can mentally size up grams, and ounces, and calories, and fat content and carb amounts of various foods - vegetables, fruits, meats, dairy items, oils, nuts - by memory) I no longer eliminate things from my diet. I made that decision after observing the fact that my seizures have gotten worse the more I restrict, the more I obsess and remove foods from my diet.

I should say, I can't, nor would I want to, unknow what I know about food. I'm now allowing myself to use my vast knowledge (and part of this is me acknowledging that I am educated enough to make great decisions) to eat the way that I need to for energy, for seizure control, and for tumor-fighting. Every body is unique. Each body has specific needs, and now that I've tried everyone else's protocols, I need to just create my own. I finally feel comfortable enough, after trying every tumor diet I could find, to fly on my own. Now I'm truly off in unchartered territory. My own rules. My own way. I feel empowered, but nervous. My training wheels are off. 

I have always put so much weight on food choices, since I was diagnosed, then progressively so as I researched more and more. Now it's up to me to make the best decisions. To compile all of my reading, my knowledge, and live healthy, to fight my tumor, and eliminate seizures, and have enough energy to get out and enjoy life. I hope I'm making the correct decision. I guess we'll find out in October when I have my next MRI. Perhaps, I just need to have faith in myself. And remind myself that no one diet (vegan, raw, restricted ketogenic, paleo, vegetarian, Budwigs, macrobiotic...etc.) cures cancer. But a percentage of people do well on each one. I need to go back to listening to my body, and quit beating my head against the brick wall of food/diet. 

I leave you with a photo of Charlie, my largest, happiest, cucumber plant. Note to self: I should probably stop naming my plants because it makes it harder to eat them. 

Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.