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.

Seizure Help

Hey Friends,

Here's the deal, I talk to a lot of brain tumor patients, and caregivers, about seizures. And although none are the same, there are often similarities, and definitely tricks. Even though each person's situation is unique, there is almost always overlap. Last night I received an email from a caregiver about his wife's seizures - a GBM patient. She switched from Keppra to valproic acid and vipmat several months ago, and had been fine, then twice in the past week she has had seizures. Each time she is forced back into the hospital is a major setback. She loses more weight (her weight is hovering in the 70's ), and becomes weaker. In corresponding, I asked him if I could bring it up for discussion on the blog, hoping that people could share their successes and failures to help troubleshoot. 

I feel bad because I've talked to so many of you about these issues, the side effects, the trial and error of seizure drugs, the specific triggers, but I can't remember everything that you all have said. Would you be so kind to share, even anonymously? I know it would be a huge help.

I remember when a caregiver told me that he gets his wife's blood levels checked regularly to make sure that her seizure meds are at the correct levels, not too high nor too low. When I heard that I was floored. I had no idea that your blood levels could be checked, or that every body metabolizes drugs differently. That it doesn't have to be trial and error, and it doesn't have to be a shot in the dark. The more we talk the more we know what to ask for, and how to help ourselves.

So if you could please share and answer as many of these questions, or whatever you're comfortable with, both he and I would be incredibly grateful (and please, elaborate, or share what you have found helpful if it hasn't been included on his list below):

My questions are this, if you don't mind:

1. Do you get major seizures or minor ones?
2. Do you go to the hospital after each one?
3. What meds are you on? I see that you wrote about keppra and I think you got yourself off that but I'm not sure what you're on. Do you mind telling me?
4. How do you think it works for you?

Here were my answers:

1. I have had a few grand mals, but now have simple partial seizures since I've been able to control them. I take lorazepam when I don't get enough sleep, I'm careful to keep my blood sugar stable, I drink a lot of water, I limit emotional and physical stress, I don't over do stimulation (sunglasses, overheating, loud noises). Every person's seizure triggers are unique. 

2. I no longer go to the hospital for seizures. I stopped because it seemed like no point, they just monitor me and pump me full of more drugs.

3. I've tried three different kinds and none stopped the seizures. I can't even remember which ones other than Keppra. So now I just take a lorazepam when I feel an aura coming on. 

4. I've been able to manage my seizures quite well. For example, I just had to do a minor surgery in my mouth which causes seizures, it's the epinephrine in the numbing shots which has been well documented in causing seizures in epileptics and I am no exception, so I took 2 mg of alozepram which is heavy duty Xanax and had no problems. Although I did sleep 10 hours afterward. 

Four Days of Freedom

The MRI is on Saturday, and with it comes phantom headaches, throbbing in the tumor cavity, dizziness, ravenous cravings, nausea, sweaty nights jumping up from bed. The usual paranoia.

I've been hiding for months, pretending I never got diagnosed. Pretending I could do whatever I wanted, eat whatever I wanted, drink whatever I wanted, live the way I wanted. And now I have to face the reality of whatever is going on in my brain. 

Which is nothing. 

(Right?)

MRI is scheduled for this Saturday. Guess we'll find out about deez noodles.

A video posted by Jessica Oldwyn (@happy_coconuts) on Apr 11, 2016 at 4:18pm PDT

.........I still don't want to do it.

Guest Blog Series - Lone Wolf

Several days ago, a girlfriend shared a brilliant idea with me. She said, "What about guest blog posts?" It came as a solution to share other people's stories since I get sick of writing about me. You'd normally never hear about any of these folks because unlike me, there are people who fear repercussions from being honest about their diagnosis. And sadly, from the stories that I've heard, their often not wrong. Once we know something about a person, we can't un-know it. And that becomes an issue regarding employment; our stories change how we are viewed. 

You guys know me, I have no filter (or a very weak one), and I just speak. But there are times when I've regretted writing this blog. It's rare, but it happens, and it's because I know that the interwebs are eternal. If I apply for a job, there is no hiding my story. I can't disguise what I've gone through, the deficits I deal with. For certain lines of work, it's unappealing for employers to hire cancer patients, especially depending on the specific diagnosis, and prognosis. It's just a fact. Anyway, I reached out to one of my tumor friends, one who is living in solitude with her diagnosis. 

My goal in sharing these stories is several fold. I want patients to have an outlet, to express themselves anonymously. I want to give a voice to different stories so that people learn the dynamics of disease. I wish life was easier, that we could all share our truths openly, but if we can't, at least we can have a format to do that here. I have no idea if there will be others who would be interested in sharing. I really hope there will be more patients, caregivers, family members, friends, etc. that would be interested in sharing their views, their experiences. I wanted to provide this slot for guest writers, because I get to hear these amazing stories, and I learn so much. It makes me a better person, it helps me understand the myriad of lives on this earth. The more I learn about other people, the more compassion I have, the more I can love deeply and be patient, and kind. And it's interesting to hear what other people go through, to hear their perspectives. I hope this provides a benefit to those who choose to write a guest post, and a benefit for those who read them. 

The goal is to start by publishing a guest post once a month. Please let me know if you would be interested in contributing. Let me pull from two posts ago, "your story is enough". Let's learn from each other. I hope you enjoy.

"I love trees, especially when seasons change.
I love their stability, strength, and endurance." - Lone Wolf

“My Story”

So I am sitting here thinking …. “This is the first time I am going public about my diagnosis and yet I am using a pen name…ugh.” There is a reason I assure you.. Ok … So where do I begin? Honestly, I am not sure where to start. I guess I will start on the day my life changed forever, but first let me provide a little history. I am a 30 something mother of young children. I am a licensed mental health therapist, and I have been married to my high school sweetheart since, well forever.

On April 2nd, 2013 I went to the ER because I was having a pretty bad headache. A few days prior I hit my head very hard on our glass shower door. Of course this was because my puppy was up to no good and I went to quickly check on her and BOOM … there goes my head. Anyway, due to the headaches, my husband suggested I go the the ER in case I had a concussion. The ER visit went from “hey your young but let's do a CT anyway to now we need to do a MRI.” Honestly, I thought that I had bleeding in my brain and I was terrified. After my MRI, the doctor returned, and the nurse took our kids out of the room. I began to cry before he spoke because I knew it was going to be news that would forever change my life.

I will never forget that the doctor sat very close to me and said, “You either have MS or a brain tumor.” My husband and I sobbed for several minutes, but then I quickly remembered that my children are down the hall coloring and I need to be strong for them. I had to be!!!

Through time I visited several neurosurgeons, neurologists and neuro oncologists. Hey, I was on an interviewing tour. Remember we pay them!! After speaking with several specialists,  I was preliminary diagnosed with a low grade glioma. You may be wondering if I had any symptoms. The answer is no, not one. The neurologist did put me on Keppra (anti-seizure) just in case. However, three days after I decided to stop taking it I had a small focal seizure in my right arm. So my neuro oncologist decided to take away my driving privileges. Of course I would NOT let that happen!!! I have three very active kids. Therefore, on July 1st I chose to have an awake craniotomy. Ok … I have to be honest here; my two c-sections were more uncomfortable and nerve wracking compared to this craniotomy. All in all, the craniotomy went well and I had over 90% of the tumor resected. 

So pathology .. What's the news? Diffuse Astrocytoma, Grade II. Now this is when my dear old friend Google became my worst nightmare. Search after search said I was going to die and worst of all the time frame in which I can die varied. So here I am “the mental health therapist” that has dealt with everyone else’s crisis now in the middle of her own. Yeah .. I know all the coping skills, to accept what you cannot change, to move forward not backward, to reach out for help, to assess signs of depression and anxiety, etc. However, during this time I was literally a “hot mess.” I was on roller coaster of emotions that never stopped. I couldn't sleep, I couldn't look at my beautiful children or husband, I couldn't look at the sorrow on my parents faces. It was such a dark place in my life and I refuse to go back there. It took so much time to get from there to where I am today. I would love to share this in posts to come. However, I say that the one thing that ignited change was when a woman told me that I live in a house of depression. This shook me to my core. You see as a therapist I have worked with many children and see the ripple effects the parents actions can have on them. At that point, I became stronger, a fighter and a thriver. I have met amazing people along the way, including Jess. Jess and I have a lot of similarities, including diagnosis, but we are similar in one very important aspect … Yes we still live in fear of the unknown but we live, love and laugh as much as we can because guess what … no one makes it out of this world alive! So maybe, and that's a big maybe, my time is shortened but having to face my mortality everyday gave me the beauty of living in the moment. Ok .. Ok .. I can go on about that forever so instead I will address why I have a pen name.

When I was first diagnosed, many people I encountered felt sorry for me. They pitied me. Every face I saw had sympathy written all over it. One thing about me is that I have always been a go-getter. You know, nothing can stop me!!! However, I began to notice that their pity weakened my strength. It just dragged me down. Let me tell you, as a therapist, I  am highly trained on empathy versus sympathy. It was interesting to experience the two first hand. This actually helped me to become a better therapist. So after this experience I limited who I told. I never EVER tell my clients because their sessions are about them … NOT me!! Also, my job doesn't have a clue. I want to be seen as a qualified therapist and not “the woman with a brain tumor.” Oh and get this,  I use medical marijuana. Yeah … Not such a fun conversation to have with parents at one of my kids next game! So, for now, I have a pen name to protect my job, my license, and my children, but as my sister in law always says “I cannot wait for your ‘I’m coming out party!!!!’” Me too!! This baggage is too heavy for me to carry, BUT if I face sympathy, pity or judgement this time around I will be well prepared to point to where the door is!!! As someone I love always says to me and now I say to you, “Light and love.”

- Lone Wolf

Astroturfing

My brother sent me this 10 minute talk by investigative journalist Sheryl Attkisson and it changed my life, and scared the shit out of me. As a person who avidly researches, this floored me. I understand that information is widely manipulated, but I had no idea that it was this bad. It's terrifying, and disgusting, and it makes sense. I hope you find it as interesting as I did, and half as disheartening. Think again about what you think you know, and who you think you can trust.

"In this eye-opening talk, veteran investigative journalist Sharyl Attkisson shows 

how astroturf, or fake grassroots movements funded by political, corporate, 

or other special interests very effectively manipulate and distort media messages."

So what do you do? How can you protect yourself? How do you know what to believe? How much further can you really get with a discerning mind if there's so much conflict of interest, and little disclosure? Sheryl has some tips at the end to help you analyze distorted media.

This is a major issue for me with research studies. There are drug companies that fund studies, or they donate [endowments] to [medical] schools within colleges. It's blatantly a conflict of interest. Everything is so tainted, so tangled. Where's the truth? How is it that our knowledge base that is our researchers, and scientists are so exploited? You could even go as far as say they're bought. It's getting uglier and uglier, and I don't see how people can wade through the sludge to protect themselves. It's just gross.

No Model

A couple of months ago a patient told me that I'm a role model, and it completely freaked me out. That is a ton of responsibility. I don't want to model anything other than my own behavior. How can I be a model for others, what if I have a recurrence? Will patients think they're going to die too? That we're all doomed? That's how I feel sometimes when tumor friends have recurrences. I don't want that on my hands. What if I just want to eat crap for a year and see what happens? You can't do that if you're a role model. When you're a role model you're held to a higher standard; there's good behaviors that you're supposed to exhibit. You're supposed to lead by example. That's a lot of responsibility, and it's definitely too much stress. I'm not trying to be perfect, I'm just trying to be me. And sometimes that means mimosas and scones. And what brain tumor role model would encourage that? (Sugar on sugar on alcohol?!) A naughty one. One that shouldn't be looked up to. 

A couple of days ago I removed my favorite Buddhist saying and replaced it with this.
I like to think I made it up, but probably not.

Last night, a friend helped me see that I am not other people's stories. That when I help, I don't have to own what people are going through. I can assist in a time of need, hold their hand in a moment, but allow and encourage people to continue on without me. It feels a little bit like accelerated parenting. Help people find their wings by connecting them to other people and ideas and resources. It's easier said than done, but it's a lesson we all have to learn. In life, we connect, even if we don't want to. There's these invisible strings that pull us together spiritually, emotionally, physically, and if you're dealing with heavy stories all the time, you can become tangled. Tied up. And that's where I was, in a balled up mess, until she helped me break loose. 

Someone asked me last summer, "What gifts has cancer given you?" And at first I wanted to blurt out, "A horrible case of paranoia." But then in an epiphany, I saw a slideshow of faces, of all the interesting, caring, brilliant people I've met because of my diagnosis. Many of the people, most actually, who read the blog, don't comment. They're private, but they can somehow relate to what I'm feeling, to what I'm going through. Some have had cancer, others are currently undergoing treatment, and most are healthy, but what I write has struck a chord in them. The biggest shame, is that there are exponentially more people who read this blog than engage. I wish people felt comfortable, and it's my fault for not facilitating it, to comment more, to create dialog not just toward me in private emails, but amongst each other. Maybe people don't realize it's easy to post anonymously, or use a pseudonym. 

I feel strongly that we have to be the change we want to see. And sometimes, eliciting that change is just talking. It's getting the information out there. It's discussion. It's provoking thought. We learn invaluable information from others, and I can't express enough the powerful conversations that I've had between patients. They have altered my view on various things, and helped me evolve. But the conversations are private, and I'm not at liberty to share. If only people could open up, even anonymously, we could all benefit. There have been many times that I stopped writing because I thought that my story, my thoughts, my experiences, held no value, so I didn't bother, only to find in private conversations with friends, that my views and stories helped them. So the next time you think you don't have anything to contribute, please think again. Sometimes it's not what you bring to the table, it's the responses that are elicited and the trajectory of problem solving, of piecing things together, with multiple minds, that blow us away. The most beautiful thing would be for readers of the blog to begin dialog even with each other. I field so many email questions, but what if a person chose to post a question in the comments, they could do it anonymously, and just see what people suggest for solutions, or just share their knowledge. The more we talk, the more questions will come up, the more problems we could address, the more we could educate ourselves.

I have grown by sharing my story. It has made me a better person. I took a hiatus because I became overwhelmed, but with the right tools, by setting some boundaries, I think I can continue, and be better for it. It sucks, but no one is going to set your limits, you have to do it yourself. Kinda like the dishes. Okay, that was dumb. But, you know what I mean. I could have shriveled away from the blog, and in essence, I did, but it would be a shame for me to lose the magic. It has brought me so much joy, revolutionized my damaged brain, given me hope, and love, and friendship.

Thank you for giving me space, and also encouragement while I was away. The most powerful thing I've heard lately, was, "Your story is enough." I never feel like I do enough, and to be given permission to own that as a fact - that I am enough - was powerful. I'm absorbing it. I hope you can except it for you too.

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! :)

Cancer Convos: Episode 1 #Scanxiety

In September 2014, I went to my premier First Descents program. The experience changed my life, and I came away from the trip with a renewed sense of worth, of confidence, of understanding for other cancer patients of different diagnoses, and best of all some great friends. When you show up for camp, you have about 15 minutes to come up with a camp nickname. The first girl I met was in the airport. Her blue eyes were piercing, she had such depth without even saying a word. It was in her aura. On the ride to the house, she nicknamed me coconuts. She had already been dubbed Crush from when she started her journey with metastatic triple negative breast cancer. We have been friends ever since, and have toyed with the idea of creating some sort of platform to share our ridiculous thoughts/frustrations/experiences. That brings me to today, the first episode on our YouTube channel, Cancer Convos with Crush & Coconuts. It's a fun thing for us to do together, especially since we live on opposite sides of the country. We hope that over the coming episodes we can lightly touch on some of our stories, and help people navigate their cancers too. Today's episode is about #scanxiety, and the types of scans we love and hate. We touch on the pros and cons of different playlists, and the importance of third party independent scan reading centers.

I hope you guys laugh as much as we did during the filming. I felt a little awkward (Jessica quit fidgeting, and playing with your hair!), but I'll get better with more practice. If you like the video please subscribe, or share it with friends.

Our goal is to empower patients with knowledge. There are all sorts of nuances with cancer, and when we talk, and share our stories, everyone benefits!

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.

Merry Christmas Friends!

MRI is scheduled for this Saturday. Guess we'll find out about deez noodles.

A video posted by Jessica Oldwyn (@happy_coconuts) on Apr 11, 2016 at 4:18pm PDT

Merry Christmas and Happy Holidays! Thank you for helping me survive my cancer diagnosis, for helping me thrive. For picking me up when I don't have the energy to do this alone. Your support, your laughter, your hugs, and your understanding gives me strength, and a great deal of gratitude. When I was diagnosed and they told me they had nothing to help me get better, it was terrifying. But a day turned into a month into a year into several, and here I am. I've successfully completed three brain surgeries and my dream is to never undergo another. We've found amazing treatments, and I feel wonderful, and happy, and I thank all of you for helping me navigate this exhausting, wild ride. I'm still scared every single day, but it's getting better. When doctors expect you to die, you believe them. But in my heart, when I get scared, I remind myself that every single life, and every diagnosis is unique. I am not a statistic, I'm me. Sending all of you big, big love! ❤️❤️❤️

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.

Third Party MRI Results

We have the third opinion MRI report. If you had missed it, we were told by University of Washington that my MRI was stable, dating back for three years. Then, UCLA reviewed my MRI scans and told me that there had been changes in my brain, that the scans were showing recurrence and that I needed to start radiation and enroll in one of their clinical trials. (Click on the above links for the posts.)

UCLA did not review my file before looking at my brain scans, they did not look at my treatments before recommending radiation and the clinical trial. Had I not dogged them and asked many, many specific questions, I would be starting unnecessary radiation. I would be enrolled in a clinical trial for a drug that I do not need at this point in time. The treatment that I do, the dendritic cell therapy, causes some inflammation and slight increased FLAIR, but I find it very interesting that two facilities do not find reason for additional conventional treatments when UCLA made me feel like recurrence was a fact.

It is so important to ask questions, as many as you can think of. It is important to follow your gut, your intuition. You are in control of your body, and to a certain extent, your fate.

Thankfully, my family is stubborn, and we went out on our own to a private facility that reviews MRI scans. They don't recommend or provide treatment, they only analyze the images and report what they see. It's wonderful, and worth the money to get an unbiased review.

I hope you can read the report, it's fascinating. It's definitely the most in depth radiology report I've ever received. I feel relieved, and tomorrow I am going to celebrate by running a one person 5k. It has become my favorite distance.

Thank you for all of the love and support and kindness. I live on an inevitable roller coaster, but today I can hop off for a minute and just breathe.

Garlic as Antibiotic & Diets

Somedays I dink around on the US National Library of Medicine National Institutes of Health. I don't always read about cancer stuff, though. Yesterday I found a cool study showing the synergistic effects of honey and garlic in treating common bacteria like Staph, E. coli, and Salmonella. I was researching treatments for my persistent lung infection (remember that fever I was so excited about?). Anyway, I love finding fun new ways to treat myself, or take care of myself. A few weeks ago my lungs started burning - no sore throat though. And the more I did, the worse it got. I tried running out the sickness (not my brightest idea), and waiting it out. I thought about getting antibiotics, but I haven't taken them since high school. Pharma-antibiotics are amazing, and necessary, but I still like to avoid them at all cost because of the fact that they kill all the good bacteria in your gut, and your gut is not only important for digestion, but it's responsible for 70% of your immune system. I don't want to kill all my good bacteria, so I like to use whole food antibiotics like garlic. I probably sound crazy, but there is actual proof that the allicin and DAS in garlic (most effective when minced and set out for 10-15 minutes) is antibiotic. There's a pretty cool excerpt below, demonstrating some of the proof. There is a link at the bottom to read the study in its entirety. If you head to http://www.ncbi.nlm.nih.gov you can find much more (add words like "garlic", "xdiallyl sulfide", "allicin", "antimicrobial", etc.). Anyway, I started dosing heavily with garlic, two minced cloves every two hours, along with the juice of a head of garlic, 6 lemons, and 8-10 inches of ginger, and low and behold the infection is going away. My cough is almost gone, and I feel much better. Some people don't believe that foods can really make that much of a difference in health, and sometimes I believe them, but that garlic is seriously amazing. I wish food didn't matter, but it does. I would much rather have been eating two cookies every two hours but I can guarantee that there's no antimicrobial benefits from the deserts I like to eat.

Background 

In Ethiopia, people use A. mellipodae honey and garlic mixture to treat different types of diseases such as cold, cough, asthma, diarrhea and respiratory infections. But still there is no any scientific report about the synergic effect of any type of honey and garlic extract. People use A. mellipodaehoney and garlic in various combinations, there is no any scientific report about the synergic effect of these substances. Therefore, there is a need to investigate synergic antimicrobial effect of A. mellipodae honey and garlic mixture.

Research frontiers 

This finding strongly supports the claim of the local community to use the combination of A. mellipodae honey and garlic for the treatment of different pathogenic bacterial infections. So, garlic in combination with A. mellipodae honey can serve as alternative natural antimicrobial drug for the treatment of pathogenic bacterial infections. Further in vivo study is recommended to come up with a comprehensive conclusion.

Related reports 

There are different reports on the separate issues of antimicrobial effects on honey and garlic. However, a report on the synergistic effect of honey and garlic is scarce. This finding fills this research gap and may help base information for further in vivo research.

Innovations and breakthroughs 

The finding of the study paves a way to consider and acknowledge the traditional knowledge for the treatment of infectious diseases using natural resources like honey and garlic.

Applications 

Garlic in combination with A. mellipodae honey can be used as antimicrobial agent to different pathogenic bacteria. As recommended by the author it needs further validation and then it would be important for the community as it is routinely used as food.

Peer review 

This is a very good finding in which the author investigated the synergistic antimicrobial activity of mixture of garlic extract and A. mellipodae honey against pathogenic bacteria. The results are interesting that garlic in combination with A. mellipodae honey can serve as alternative natural antimicrobial drug for the treatment of pathogenic bacterial infections. - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757282/

The other fun study I found talks about the effects of diet and neurological and non-neurological diseases. It was co-authored by Seyfriend (remember him, the professor from Boston College - the ketogenic diet for cancer guy?). Check this out.....it's exactly my hypothesis, even though it wasn't specifically regarding cancer.

Abstract

Background

Diet therapies including calorie restriction, ketogenic diets, and fish-oil supplementation have been used to improve health and to treat a variety of neurological and non-neurological diseases.

Methods

We investigated the effects of three diets on circulating plasma metabolites (glucose and β-hydroxybutyrate), hormones (insulin and adiponectin), and lipids over a 32-day period in C57BL/6J mice. The diets evaluated included a standard rodent diet (SD), a ketogenic diet (KD), and a standard rodent diet supplemented with fish-oil (FO). Each diet was administered in either unrestricted (UR) or restricted (R) amounts to reduce body weight by 20%.

Results

The KD-UR increased body weight and glucose levels and promoted a hyperlipidemic profile [the unrestricted ketogenic diet lead to increased sugar and fat in the blood, along with weight gain], whereas the FO-UR decreased body weight and glucose levels and promoted a normolipidemic profile, compared to the SD-UR. When administered in restricted amounts, all three diets produced a similar plasma metabolite profile, which included decreased glucose levels and a normolipidemic profile. Linear regression analysis showed that circulating glucose most strongly predicted body weight and triglyceride levels, whereas calorie intake moderately predicted glucose levels and strongly predicted ketone body levels.

Conclusions

These results suggest that biomarkers of health can be improved when diets are consumed in restricted amounts, regardless of macronutrient composition. - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4047269/

Okay so, do you see my contradiction here? At first I say that food does matter because it can kill pathogens, then I kinda say that as long as you're calorically restricting, macronutrients don't really matter when it comes to health. You pull up different studies and you'll get contradictory messages - or at least you could argue different interpretations of the second study. But are they mutually exclusive, these two reports? Absolutely not. They can both be true. One is talking about natural chemical properties in food killing bad bacteria, and the other is talking about how an unrestricted diet high in fish oil, although high fat, normalizes body fat and lipid profiles, promotes weight loss, and lowers circulating blood glucose, unlike UR-SD and UR-KD. Or, if you want to eat a Standard (American) Diet, or a Ketogenic Diet, you'd better restrict your calories by 20% if you don't want to have negative health effects. Macronutrients DO matter, but at least you have options. 

This is what I do when I'm bored. Obviously I should go munch on more garlic so I can reenter society. (I have voluntarily quarantined myself.) One more day and I'll try running again - better do it outside though because I probably reek like a big fat garlic clove.

Thanksgiving

Happy Thanksgiving everyone! Hope you were able to enjoy friends and family - we're back in Friday Harbor, the homeland. Enjoying every moment.

The celebration is not over, but I already have to say that this Thanksgiving is the best yet.

Pre Turkey Trot

Mid Turkey Trot (paused to take a weird selfie) - the race literally runs out to my old house and back. Unfortunately, it's behind Dan's noggin.

Post Turkey Trot

I'll bet we get MRI results this week. M.R.I. That's the last time I use those letters until after the weekend. Dan's chomping at the bit already again, gotta go get bundled up for our morning run.

Love to all!

Don't Fear Germs

I'm miserable. But I'm excited.

I've had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.)

Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I'm not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn't getting loose so the coughing didn't last.

The weird thing is that I've been feeling hot for the last week, and achy. But I always find a way to reason it out.

This brings me to yesterday. Finally, so miserable that I couldn't move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn't weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to eat cancer cells.

There are several cases documented of people who get fevers and it causes a regression of their cancers.

Once I learned the fever thing, several months ago, I have been trying to catch germs when people are sick. A long time ago I read a retrospective study about people with glioma. It showed that those who get diagnosed with glioma were described as people who stated they never usually got sick or had broken bones. I thought that was interesting, and I easily fell into that group. So now, I'm trying to rectify it by purposefully enhancing my immune system by putting myself in positions where I can snag a fever. Lucky for me, my nephew is practically always sick and a few weeks ago the sweet little bugger was flaming hot, and coughing. I took deep breaths around him, and hoped for the best, even sipping on a drink he had. I did it discretely. Now, maybe I'm just crazy, but I literally never get sick. I haven't had fever since September of 2012. I specifically remember it because it was right before the most recent brain surgery and I was worried it would interfere with the procedure.

So here I am, chilling with a 100 degree temp, and although achy and physically pretty miserable, my mind is partying. I did it! I earned a temperature and as those pins and needles ravage my body, I imagine my t-cells and cytokines swimming around in my body looking for foreign invaders of bacteria, and viruses, and tumor cells! I will not take aspirin to lower my fever, I will just ride it out. And to explain my reasoning, I sent some articles to my parents and Dan so that they would understand where I'm coming from. When I talked to my mom this morning she was impressed and agreed that she would reevaluate how she handles a fever too.

A fever is a wonderful response, it's like a free housekeeper.

It looks like we've been trying to stop the fevers, when actually that is a detriment to our immune system. This is great to know! Especially if you have kids. There is a lot of information out there showing that people that grow up with fevers (as opposed to people like me who usually never get infected) have a much less probability of getting a malignancy later. Note to self - try to ride it out, but monitor any significant changes.

Anyway, I'm still a little delirious and I don't know what I'm leaving out on here, but hopefully you can get the picture and do a little research on your own.

It's miserable riding it out, I'll admit, but I'm excited about my immune response, so I'll smile through the pain.

Here's a great article from Nursing Times discussing the benefits of not giving patients paracetamo for fever. The next article is a few cases of spontaneous remission after fever. It's fascinating. There are also all kinds of research studies that you can look up online. If you're really curious, look into William Coley's treatments in the 1800's. I hope this random post helps people become less fearful of germs, and viruses and bacteria. Because there is so much that we don't know. Now, I may still be completely insane, and I may be completely off base to want germs, and to initiate fever, but heck - why would doctors try to imitate hyperthermia for cancer patients all over the world as a treatment? (It's a widely accepted form of treatment all over Asia and Europe.) There's something about this concept, and I just got my fever treatment for free! I do love a good deal. :)

Nursing Times (oh crap - they allowed me to read the article once but is now restricted to members)
http://www.nursingtimes.net/does-giving-paracetamol-to-lower-raised-temperature-interfere-with-the-bodys-natural-defence-response-to-infection/5010217.fullarticle

Fever, Cancer Incidence and Spontaneous Remissions 

https://www.samueliinstitute.org/File%20Library/Knowledge%20Center/Publications/meuroimmunmod.pdf 

Immunity over inability: The spontaneous regression of cancer

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312698/

Fever Therapy Revisited

http://www.nature.com/bjc/journal/v92/n3/full/6602386a.html

It's Okay To Be Weak

Well friends, we have yet to hear back about the third party results, which is just fine with me. For the first time in a long time I'm not anxious to hear the outcome. I just want to relax and not worry, and breathe, and live. I don't have the discipline that I used to. I am unable to restrict my diet, and am unable to rigorously exercise. I do not have the drive that I once had, which was born out of fear. The unfortunate thing is that fear was a bear, chasing me through the forrest, and without that same neurotic stress, I am unable to rise to the challenge of forgoing food, or drink, of pushing my body to extreme lengths for cardio or weights. I walk often and try to jog every once in awhile. I hit the sauna here and there, but I am in a state of relaxation, both mentally and physically. I am literally enjoying every moment. I spent years, several years, after diagnosis, trying wild extreme diets, taking hundreds of pills a day, trying random and scientific based treatments, and I'm tired. I don't have it in me anymore.

I honestly don't know how I ever restricted myself so diligently, so harshly. I'm just bone tired. But I'm happy. I'm thicker, and I don't love that, but I don't have the heart to discipline.

It's embarrassing that I can't practice what I preach, but it's the truth. It has been over 68 months since I was diagnosed, and 65 of those I was on crazy cancer diets. At times it has been a complete obsession. And when it wasn't an obsession it was the root of shame due to moments of failure, or stress from expectation. Living with cancer is living in a vortex. You're here but you're not. You're alive but every decision could lead to your death. Your stakes are impossibly higher than everyone else. I sometimes hear people say things like, "We're all dying." And I think, "What an asshole. Just shut up" The only people who say that are people who aren't in the vice of death's grip, or they're already diagnosed but trying to make other people feel better. There is nothing like living with cancer. You're supposed to just be happy to be alive, yet you're living in a slaughterhouse hearing the screams of your cancer family as they make it to the kill floor. You're being shuffled closer sometimes, and at other times you get shoved out of the way only to lose the friend next to you. It is a terrible emotional state that completely effs your brain. After years of this madness, it has taken such a toll on me that I can't bring myself to live in a state of constant battle. It's just too much. My stomach is so weak now from the years of drugs and supplements that I regularly vomit from queasiness. Last night my head may as well have been spinning, possessed, with horizontal projections - all from an off-label that I have been taking for almost a year. Dan was so terrified that he almost stayed home from work today to make sure I was okay. At a certain point you have to stop. Or at minimum take a break. My body can not take what it once did. Unfortunately, she never ceases to let me know.

I still eat quite healthy, sometimes less healthy (or worse yet much much less healthy) than at other times in my cancer journey, but as I have evolved I've realized that not only has my brain changed, and views changed, my physiology has changed, and my attitude has changed. Every single person in life has their journey. I have absolutely no idea what the purpose of my life is, other than to share my story, and let people know that we are inherently strong, but we should know that sometimes it's okay to be weak too.

Sometimes we ride, and sometimes we carry.

UW Radiology Report

University of Washington just emailed me my radiology report, and since I can easily copy and paste, I thought I would post it here in case it might be helpful to others. UCLA doesn't provide a radiology report at their Tumor Board, however in the last post I included their opinion on my brain scan (hint: they think my tumor is growing). Now, because of the differences in opinion, we wait for the private third party review from Iris Radiology to determine if I'm in the early stages of a recurrence or whether the differences in findings are more a matter of MRI reading techniques.

Narrative

EXAMINATION:
MRI BRAIN WO/W CONT

CLINICAL INDICATION:
History of left parietal infiltrating astrocytoma status post resection.

TECHNIQUE:
MRI Head Tumor (Primary) contrast plus post GD SAG T1 (Glioma /GBM)(B 2PT)

Non-contrast Head: Axial T1, axial T2, axial diffusion.
Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal
& sagittal T1.

CONTRAST:
Prohance 15 ml 10/24/2015 08:10 AM INTRAVENOUS


COMPARISON:
Multiple prior MRIs of the brain, most recent dated 3/22/2015.

FINDINGS:
Post surgical changes compatible with left parietal craniotomy and tumor
resection again noted. Surrounding FLAIR hyperintensity is unchanged. There is
no evidence of new areas of enhancement at the resection site or elsewhere in
the brain parenchyma. A right frontal developmental venous anomaly is noted.

Incidental note of small intracranial right vertebral artery flow void again
noted and unchanged from 3/22/2015. Otherwise, the major vascular flow voids
through the circle of Willis are patent.

The ventricles and sulci are unchanged in size. There is stable ex vacuo
dilatation of the left lateral ventricle due to volume loss.

Orbital structures and extracranial soft tissues are normal.

ATTENDING RADIOLOGIST AND PAGER NUMBER

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