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Katie “Crush” Campbell 1983-2016

This is a hard post to write. There is the concept of death, and actual death, and there is a vast difference between the two. Saturday evening, I was munching on corn chips, sipping on a margarita, listening to old stories at Dan’s 20th high school reunion, when a friend shared that Crush had died. My pulse raced, everything froze, I went deaf, time stopped. In a split second I recorded that I was living, but more importantly, I alive, a luxury she no longer enjoyed. Shocked, I quietly excused myself, weaving through the hall to the bathroom for privacy. I sobbed unabashedly, not caring about the strange women who pretended not to see me. I cried for Crush because she had so much more life to live. I cried for her husband, and friends, and family. I cried for those who love her.  If you’re new to the blog, Katie “Crush” Campbell is a buddy that I met at a young adult cancer camp, First Descents. After rock climbing in Moab, UT, we kept in contact for the past two years, leaning on each other, laughing, supporting. We started a YouTube series this past year, Cancer Convos with Crush & Coconuts. It was short lived, and fun when we started, but it was emotionally exhausting, and eventually it fizzled out. We wanted to inspire and share the nuances of life as a young adult cancer patient – a world most don’t see. But, with our rigorous health demands, we simply couldn’t maintain. And, even though the series ended, we remained friends, with the final text message arriving just Friday night, several hours before her death.  I really don’t have anything eloquent to say, nothing to make this heartbreak any easier. I’m numb now. Confused. I think I’ll always be at a loss about…

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A Letter From Dad

My dad emailed yesterday, after calling in tears. He is deeply moved by all of the generosity, and compassion, and felt compelled to share his feelings on the blog. I love him so much, and am happy to oblige! Hi Jess, Humility to a new level! Greetings to one and all, my daughter has graciously allowed me to interject some thoughts on her blog. This is prompted by the results of the GoFundMe (instigated by some wonderful friends of my little Cricket). Bonnie and I just returned from an arduous trip. It was difficult, but full of beauty. The goal was to procure medicine for Jessica in another country, a country that is extremely poor. The beautiful souls we met, who helped us, did it with joy in their hearts, but not much more. Then, when we returned, we witnessed what has happened with Jessica’s GoFundMe and I about fainted. As I scrolled down the donation list, I could not hold back my tears. I know that many who will read this don’t know me, so let me give some background. I spent a year in Vietnam 1966 and then tested the hippie world for a few years before a stint in a vegetarian lifestyle. On to logging, trucking cross country, then to Alaska and working on the oilfield in the Arctic for 14 years. I was not a man prone to tears, but in the last two weeks, I have probably drained 4 or 5 gallons of them. It’s been a good cleansing, but has reached a point where I am having trouble shutting it down. My first 36 years were defined by the fact that I was a great consumer of spirits. From that haze, I have been a very selfish and arrogant individual for a large portion of my…

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Extended Version Episode Online Now

Oh my god, what an emotional 24 hours. We watched our episode (and Kendrick’s too!) last night, and even on the third time, yep, I cried. Then, this morning when we watched the longer version on the website, and you guessed it. Cried again. But it’s so lovely!!! From the music, the editing, reliving that beautiful wedding, uuuuuugh, it gets me every time. I am so filled with gratitude to everyone, for all of the help that we continue to receive. The other day Dan and I were driving, in a rush, and we had no traffic, and I was telling him that I feel like the luckiest person in the world. I feel like everything always works out, or that no matter what, we can find fun in any situation. Gold dust floats around our life, maybe it’s dancing angels overhead – I hope so, I like the mental image. I don’t know how we have been this blessed. Dan smiled as I was laughing in amazement of our continued fortune, and then he said, “You’re right, except for that small brain tumor thing.” And I almost wet my pants. Hahaha! Oh right. That. I’ve embedded the full version of our episode below (last night’s was an 18 minute clip), the full one is 35 minutes. If you would like to use a link to watch in a larger window (which makes a lot of sense), you can click HERE. The longer version helps fill in the backstory, and ongoing details. I love watching everyone, their faces when they show up to the “birthday” party, and the intimate interviews with my parents and Dan. Those are the tearjerkers. What a lovely life I get to live, surrounded by these beautiful souls. Your browser does not support iframes.

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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…

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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.

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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…

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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…

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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…

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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…

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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.

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