Wednesday, August 24, 2016

A Message From Dan

Hello everyone, this is Dan.

Earlier this afternoon Jess had a seizure. It was different then her normal seizures as it came on with no aura or preceding affects. She attempted to call me but was unable to use the phone until things had passed and luckily I was not too far away and got home quick to find her laying, unable to move, in the yard. She has been going non stop for the last few weeks and I feel this has put a strain on her. She always wants to answer every text, email, comment, and no human could possibly withstand that pressure. She is slowly getting better as we speak from napping, but needs to rest as much as possible. So, with that said, I am instituting a technological blackout. Most of you will remember me doing this in the past, but in case there is someone newer or does not remember, Jess will be refraining from blogging, texting, calling, emailing until she is feeling better. Or until she sneaks behind my back to do it anyway:). Jess wanted to make sure I wrote something so everyone would understand why she is not returning your messages. We have a good friend in town tomorrow, all the way from Texas, to cheer on the Seahawks vs Cowboys preseason game, and knowing her, I can't stop her from attending if I tried - however, it's imperative that she get as much rest between now and then. She's heartbroken that her running steak of no seizures has to start over, and scared that this seizure came with no aura, no forewarning. She thanks you for your patience, and is embarrassed to have to explain this situation. Thank you for your cooperation, and if you want to send her well wishes, feel free to do so on the blog. Also, even though you want to reach out in this moment with an email, text, or call, please hold off. The growing list of emails/texts/etc. will just stress her more. A comment on the blog is fine, but but other forms of contact put more of a strain of responsibility at this time. Thank you for understanding. I just want to protect her, Dan

After I carried her back into the house.

Tuesday, August 23, 2016

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 death; I can't even try to understand the concept. 

I recognize the world that I live in. I know that I am in a subgroup of the population that is at a much higher risk of death. That death is expected, but, somehow, that doesn't make it any easier.

I mourn for my friend Crush. I mourn for her soulmate Andrew, who graciously sent a personal email to me to make sure I was aware. I can't imagine his grief, his pain. 

Crush had a sense of urgency the whole time I knew her, but I never got the feeling that it stemmed from diagnosis, but rather her diagnosis only intensified it. She made things happen. She had an expanded world view, she had seen suffering and cared about the human condition. I have no doubt that she would have continued to change the world, given the chance. 

Crush was able to sneak off a book toward the end, which she felt was her legacy. It's available on Amazon. I believe that her contributions, which are many, will connect her spirit to souls all over the world. She was/is one of the most determined, disciplined, curious, joyful, thought provoking people I've ever known. 

Katie "Crush" Campbell, Katie Crushes Cancer

Monday, August 22, 2016

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 70 years. So through the travails of my daughter over the last 6 and 1/3 years and the incredible patience and forbearance of my beautiful and generous wife, I am finally learning to change. 

I thank all of you for helping "my little girl". I cannot express the gratitude and love that I feel; you have left me as a pool of Jello. There are so many of you generous, loving, and wonderful souls. I need you to know that if there is ever something I can do to help you, it would be an honor.

Also one last thing - Claire-Darth-Kendrick-Kat-Isabel (stars of My Last Days) - I could never thank you enough for sharing your unbelievable stories and your sweet spirits. And Jessica, how such a wonderful and beautiful young lady can be related to me, I do not know. You have all inspired me to be true and genuine going forward. The six stories that are shared by "My Last Days" on The CW Network has filled me gratitude. 

God Bless all of you (God being of your flavor) mine being JC.

Love and hugs to all of you,

Saturday, August 20, 2016

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.

Wednesday, August 17, 2016

The Premier

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!!

Monday, August 15, 2016

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.

Thursday, August 11, 2016

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!

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