The Premier

Meet the incredible cast of #mylastdays Kendrick, Jessica, Kat, Darth, Claire and Isabel. Tonight, we will make TV history as over the next three nights at 9 PM a @thecw, a massive television network is taking a chance in its programming and airing this three night special for one purpose... To inspire. I can't wait for you all to meet these six real life super- heroes. Please tell your friends, watch with people you love, and enjoy the journey because "you don't have to find out you're dying to start living" - Zach Sobiech. Here we go!!

A photo posted by Justin Baldoni (@justinbaldoni) on Aug 17, 2016 at 7:09am PDT

I could not be more proud to be a part of this series! I CAN NOT WAIT for you to see these souls, their stories, this amazingness. I am exhausted, my brain is killing me. We were up visiting with everyone from the premier until just past midnight. So I drugged myself and woke up at noon. That's laughable in itself! I never do that! My head has been splitting since I woke up, so I'm still in bed trying to see what I can take to not make my head feel like it's gelatinizing. I don't think I even made sense when with what I just wrote. The pressure in my head brings me back to the three different surgery experiences. Frick if I'm not losing my mind in pain.

Enough of my complaining. You guys, Justin & his dad Sam Baldoni, Ahmed and Farhoud and the whole Wayfarer family who produced this series have been so gracious. This experience has been more than a dream, more than a gift, more than we could ever have asked for. They produced these stories with pure grace, and truth, showcasing our individual stories perfectly. You will be uplifted, and inspired by these people. I can't even believe, I am not worthy, that I am included in this caliber of humans. Please share the information about this series, watching their stories has completely changed my life!!! I want that for you too!!!

I had reservations, very nervous as the premier and airing of the show neared, unsure if it would depict us accurately, but of the 18 minutes that I've seen so far, it is better than I could have anticipated. Just beautiful. The first episodes air on the CW tonight at 9:00 pm, then again at the same time tomorrow and my episode will be Friday night. I. CAN. NOT. WAIT.

We have a viewing party tonight in Santa Monica, which should show the full episodes, I believe, while you all will be able to watch the first two episodes. That should be Darth Vader, and Claire. I swear, you will LOVE it!!

Okay, Jess, shut it down and rest. Love you all, and thank you for spreading the word. Although the name My Last Days suck, it does not depict these souls whatsoever - you will be happily surprised. Justin did not disappoint!!

Can't Mask My Surprise

Always a fan of multi-tasking, Dan just caught me watering the garden with a charcoal mask on. 

In my mind I look like a supermodel.
Pictures like this royally remind me I'm just a regular model.

 

But, I'm in a rush! I have to finish the chores and get packed for a 4 am wake-up. The My Last Days 2 premier in LA is tomorrow!!!! Cripes. That snuck up too fast! We need to scream down to the airport in the morning, and jet off like we're some sort of big deal.

Clearly, looking fly comes easy, so it should be fine. 

This is going to be one hell of an adventure! It's very gracious of Wayfarer to fly us down, put us up, and introduce us all. Let's hope my cold continues to subside. At this point I sound like a two-pack-a-day-er. 

I'll keep up with Instagram updates and try to do a blog post if able.

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!

We All Need A Wizard

Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they're trying to gain the biggest viewing potential, and that potential could help people. It's all about pulling people in, about shock value. It's the world we live in. I just don't believe I'm in my last days. I don't describe myself as terminal, although that's exactly what I've been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don't know what our life has in store, for example, when we will die.

So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.

Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.

Good morning [Wizard]! Sorry for the delay.

I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.

Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.

I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.

Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.

Jess

In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.

I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.

I feel more connected to others every day, and in that, I feel more alive.

From our episode on My Last Days

In All The B's

*Written somewhere over the midwest, as I flew home from NYC late last night.*

I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I've never seen a child apply SPF by choice. When you get this crazy diagnosis it's like living in an alternative universe; you're instantly catapulted into the raw threads of life. You're 29 and 99, all at once, wondering where your life went.

My favorite part of cancer is that there's people whom I've fallen in love with. They're kind, they're gracious, they're real, and explosively smart. They're honest, we quip, tease, and I can't believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don't have to be a cancer patient, or caregiver, to be "enlightened" - yuck, I don't even like that word in the context. I'm swirled with people of all backgrounds, different histories, and the longer I live, the happier I am - if that's possible. Who would pick cancer? Not me. And I'm not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me - a person is just a friend I haven't met yet.

I'm expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it's not that simple. I needed proof to make sure that when they saw into my skull again, for the 4th time, it's necessary. I now know 7 different patients who had brain surgeries for recurrence, and it was in fact necrosis, inflammation, or slowly growing scar tissue. Crazy!! No spank you. (Granted, over the past several years, I've probably talked to hundreds of patients and caregivers - so it's not exactly common.)

I should have already gone under the knife, and I know from experience that I should be panicked; I could have already lost my crap. But you know what, we will die when we die. Ya, sure, duh, if you love those around you, you don't want to let go, and I don't know what has changed, why I'm chill, but who cares, all I know is that I will live my life not in fear. And more than ever, I'm not focusing on what I do not have. We are out of treatment money, yet I have never been more at peace. How weird! I'm not going to look a gift horse in the mouth. Maybe I won't even look at any horses.

I'm literally flying home from NYC as I type, no treatment rendered. A risk from international treatment issues. My point is that I was listening to a couple (just a few) survivors complaining about the fact that we did not get our most recent treatment on time. Not all, but several, were pissed because they had vacations scheduled. Weeks off. Do they not see the projects we drive by on our way to the clinic? Every time I blow through South Jamaica, Queens, on my way to and from treatment, I think about all those apartments, those high rises. Statistically, there are people in the projects that I pass and I doubt they're getting any cancer care, in fact any medical care, and when I hear those complaints I'm floored. It's not my role to teach people, to change others, but man is it eye opening. Fuck you guys, seriously, what does it take for people to realize how gifted we are? I'm not saying we can't complain about circumstances in life, but know your audience. Put things in perspective.

We are the privileged. Yes, my treatment was delayed by several days. No I wasn't able to stay or come back. Everything is a give and take. 

Am I scared? Bheh. No. Yes. Sure, but not really. My fear is to leave Danny. I'm convinced that if I die before him, I'll haunt him in the bees, the butterflies, the bats, the butterscotch candy he sucks on. In the burkenstocks the person next to him is wearing. He will see me in the laminate countertop on the ferries as he heads back to our home island. In the whip of the wind against his face as he gets into his truck for work in the morning. He'll see a red summer dress and think about my silliness. Is silliness even enough to accurately describe? He'll see a goober dancing so ridiculously in the grocery store that I hope he'll dance with them to not leave them hanging. 

But worse would be if he left me. That would be unbearable.

See, I have it easy. :)

A photo from my First Descents kayaking & camping trip earlier this week.
No need for a filter, life is stunning as is.

Half-Assed Update

Hi Friends,

Sorry for the long hiatus. To say it's been a crazy month would be an understatement. 

I've been on a few treatment wild goose chases, and some strong leads. I have about an 85-90% lock on my new protocol, pending any changes. (And there's always changes.) I can't get my fingers on everything immediately, but I'm headed back to NYC next week for a previously unscheduled treatment and meeting to address a few ideas. 

It's been a highly stressful time, but I'm still having a lot of fun. It IS summertime, after all. 

I've wanted to do an update, but things were up in the air. And, I don't really have the time to emote, or the energy to write just to write. It's been taxing, and when I wasn't scrambling, contacting doctors, radiologists, researchers, patients, I needed to decompress so that I could wake up and do it all over again.

I have no clue if this new protocol will be enough to stop the tumor growth - oh wait, I think I haven't even told you that the tumor is, by all consensus from every single one of my doctors, clearly growing again. Crap in the pants is about how I feel about it. 

I keep wanting this tumor life to be over, to not live in limbo, but oh well. It is what it is. I hadn't said anything on the blog - at least I don't think I did - but Dan and I had started the process (very premature stages) of getting approved to adopt foster children. Because I had been stable for over a year, it was a legitimate possibility. But I keep learning that my life is not really my own, and I don't have the luxury of planning. I realize typing this out that I may sound sad, but I'm not. It's just a fact. 

Each recurrence I am reminded that I need to just be grateful to be alive, to be here in this moment. That fact has to be enough for this life. Good thing I've been doing a damn good job of it. I'm still just as social, still walking with my group as much as I can, jogging, gardening, doing weekend trips with friends. It's not that bad to live in the moment, to tell you the truth. Maybe it's like those crazy fools that are adrenaline junkies. I'm not to that level, but I can appreciate their hunger.

Our lucky Independence Day jelly in FH. Those whispy little stingers. Just like life, beauty always comes with a price.

Also, I want you guys to know that when I run into people at the grocery store, or the coffee shop, and people introduce themselves, or say hello after years of not seeing each other, and they tell me they follow the blog, and that they care about me, about us, it's about the most gracious and heartwarming thing. In those moments I just want to reach out and hug people. And sometimes I do, and other times I don't want to freak them out. So thank you, for caring, and for telling me. It makes me feel incredible!

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. 

Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!

Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.

Ha! Makes me laugh every single time.

I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining. 

Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!

Start Now, The Creativity Journal by Kate Neckel

I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

Grit: The Best Four Letter Word

A girlfriend just introduced me to the concept of "grit". I knew the word well, although in my family it's termed sticktoitiveness, what I didn't know is that a curious woman is researching it. Angela Lee Duckworth has evolved into a scientist (she was corporate, then became a teacher, then went back to school to become a psychologist), and her work focuses on determining what is "grit". She did an amazing Ted Talk, sharing what she had learned, and at that time she didn't know if grit could be taught. Here's the cool part, one day, probably not too long after her Talk aired, Coach Carroll happened to turn on the tv to the Ted Talks, and listened to Angela. The subject so moved him, especially the part where she wasn't sure how to transfer or teach grit, that he immediately got in contact with her.

It was fateful that Coach caught Angela's Ted Talk (of all the days to turn on a Ted Talk, and for all the TT's out there, it had to be this one), but it was grit, that drove him to reach out. See, Coach has been living a gritty life, full of purpose, and drive. With strength, and humility, and he's been teaching it. 

So tonight, my girlfriend invited us to attend the Town Hall Meeting at Seattle University to listen to Angela and Coach talk about what it means to have grit, how you can foster it in yourselves, how we can nurture it in our children, and in those around us. And good God it was powerful. And it was just what I needed. 

You see, even though I'm not convinced I'm dealing with a recurrence, I still have cried quite a bit about this turn of events. At first, I thought to myself, I can't possibly handle a fourth brain surgery. Not all that pain again, not with the danger of my complications, the blood clot and dura mater hardening, the risk of dying. What if I lose my language or mobility like I did? The months of speech and physical therapy, my God, I can't go through that a second time, I don't have the energy. As those fears swooped in, I realized, I'm not really scared of a theoretical surgery, I'm bawling because of the freaking trauma I've endured. It was residual emotional pain that rides the waves of those memories. It's powerful, and traumatic. 

Listening to that Town Hall Meeting was moving. It was catalytic. It was comforting to hear that you can't lose grit, you may not always be in touch with it, but you can't lose it. And if you're gritty, that doesn't mean you don't need encouragement, or guidance, or best of all, coaching. Having grit doesn't mean you're infallible, that you have everything figured out, instead it means that when you get bumped, you don't let it deter you. That you continuously rise up to the challenges placed in your path. 

What I love about grit, is this concept that we can all be great. We can be gritty with our jobs, with our dreams and our daily lives, and for me it's especially true for cancer. It's about being passionate, about educating yourself, learning from your mistakes and evolving. It's connecting and absolutely never giving up - even when you're beaten, and exhausted, sad or scared. 

I like to think I have grit, but lately I had lost touch with Her. I learned tonight that even if you feel lost, grit can not escape you. That we all need coaching, support, and unconditional love, in order to truly be our greatest selves.

I think it's impossible to be your best self without learning from others. I have learned grit from all of you. You've helped support me in all ways, and that is why I am still here, why I've been successful thus far. It's easier to get back up when you have a hundred people reaching their hands down to you.

Today, as I drove to the gym, I started sobbing. I sat in my car for a few minutes, pulled myself together, then went in and worked out. Then I walked back to my car and before my door was even shut, I started sobbing again. I was embassed that it even happened, frustrated that I was still this emotional about everything. Then, tonight, while I was listening to Coach, and Angela, I realized that grit is in the every day. Grit is determination, and heart, along with effort, and perseverance. And, today, although sad, I refused to be defeated. So I guess Grit never left me, I just needed to pay attention to her.

Angela Lee Duckworth has written the book Grit, and also has a fabulous Ted Talk that you can watch here:

UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)

PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

Guest Blog Series - Anonymous

It's the first Friday of the month, and that means GUEST BLOGGER! I am loving reading other people's perspectives, their feelings, their experiences with their cancer and how it effects their daily life. When I received this article, I immediately started reading it aloud to Dan. We were both floored by her candidness, and her ability to get us chuckling in one minute, then nodding our heads in agreement, then cringing. Her writing is organic and true, and I love it. I'm very grateful to Anonymous and Lone Wolf for participating in the Guest Blog Series. 

Jess, the guest column idea looks like a good one. I was completely absorbed by Lone Wolf’s description of her experiences, partly because she writes well but mostly because she writes well about shared experiences. 

Take the “tell your friends or not” issue. When I was diagnosed, I wanted to keep a low profile but it seemed to be hard for my family and against the advice I was getting from the experts. “Let your friends in,” one writer urged. “Keeping a serious illness under wraps is like trying to keep a beach ball underwater,” another noted. True enough.

I ended up writing about my diagnosis and sending installments via email. Of course, once you start that, everybody knows – and they want to know more. Human nature is well-intentioned but it didn’t take me long to cringe at the eventually predictable conversations. Me: “Hey, how’re you doing?” Friend, “No the question is how are YOU doing?” There’s a certain look in the eye. It sets me apart. It makes me feel somehow targeted whether I feel like talking or not. Even whether I know who’s asking or not. Word gets around. Cancer is interesting. A grocery clerk at a local store invariably approaches me when I come in to ask how I’m doing. I have no idea who she is but I know the look and the sound of the voice. The cancer survivor has entered the store. (One of my sort-of friends announced at Market Place in a loud voice, “She’s a cancer survivor.” What gets into these people?) 

I’m doing very well right now but this has been an ordeal. Chemotherapy and radiation are not fun and all of us who go through the treatments know the peculiar fear. What is this stuff doing to me? After-effects aren’t pleasant either, but all of it has been manageable and I feel good about life in general, that is until I get into another conversation with one of our relatives who likes to tell me, “I would never put that poison in my body.” 

So far I am unfairly attacking my poor well-meaning friends/family but unfortunately there is no perfect formula for talking about cancer so I can’t adequately advise people when I would just like them to shut up. Just let me go back to being normal and benign. Try to forget everything I’ve told you. 

I have always been a hypochondriac but I am now beyond belief. Remember Veda in “My Girl?” She was so afflicted that she thought she had prostate cancer. I am just about that bad. Currently I’m certain that I have breast cancer, tongue cancer, and brain cancer but I have not (yet) seen an oncologist about any of these. “Riddled” with cancer as I’ve heard it said. I am tempted to go hunting for symptoms but the Internet is a terrible place to look for information. If you look for fatalities caused by hang nails and acne, you will find them. 

Then, too, sometimes the people who should know better, do not. I went to see a specialist in Bellingham about two weeks into this “journey” (“journey” is as popular as “survivor”) without realizing that she is a heartless witch. I asked for three things, a clear diagnosis, the options for treatment, and some hope. I got the first two but the third wasn’t in her repertoire. Instead of hope she gave me the odds – the odds against survival beyond a couple of years, the odds in favor of recurrence, the odds in favor of the grim reaper coming to call. I was stunned into silence – a rarity for me. 

So…here I am, feeling good, feeling smarter, loving my family and some of my friends more than ever, looking forward to summer, and gaining inspiration from others. Some of them are celebrities. Joan Lunden appeared bald on the covers of magazines, Angelina Jolie has undertaken extremely brave measures to assess in advance any cancer that might be genetically ready to pounce, and Jennifer Griffin, a tv news analyst, diagnosed in 2009, has conquered triple negative breast cancer. These women and many others keep my optimism intact. True for my admiration for Jess too although she resists the pedestal. 

Jennifer Griffin said this: “The problem is we all think we will live forever. Cancer stops you in your tracks and makes you think about how you want to live your life.” And that’s the truth. 


Anonymous

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! :)