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. 

Cancer Convos: Episode 1 #Scanxiety

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

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

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

Polar Bearing for FD

Alright, sorry for the delay. We've been inundated with friends all weekend. Yay! So we've been enjoying the company, and now it's time for the results of the fundraiser. Drum roll please.........we did it!!! We climbed 51 climbs, I believe. I knew we wouldn't be able to remember all of the climbs so we took a photo of each route we completed (many we climbed a few times). I'm uploading the photos to prove it, although we did sneak in some kid's climbs, but hey, they were still 10-12 foot climbs, and of course we had to do climbs in the bouldering area (okay okay, we did mostly bouldering to get the quota). Those count, right?

We had so much fun climbing; you can't beat that crew! And in honor of all those magical donations which I consider the equivalent to a bunch of carebear stares to hearts you've never met, nor likely will, Dan and I ran into the drink today to say thank you.

And the video to prove it:

It's far away, and you probably can't easily tell, but I pulled off a shallow dive and we both went under the water for a full dunk. We also spooked three huge rock crab. One of them was missing a pincher, poor guy.

Here's a photo with our photographer, Burke. After filming, he set down the camera and ran in too! So look at that, you inspired a whole new person to get "OUT LIVING IT".

Thank you again for the AMAZING success of this fundraiser. You all completely blew us away with the continued generosity, and support. Please know that the money that you donated is truly going to have an impact on young adult cancer people. It was a turning point for me, a huge eye opener, and one of the best weeks of my whole life. When you get diagnosed then get thrown into the medical system, it's overwhelming and your whole life changes. It's terrifying, and sad, and you have amazing friends that come together to help you, but there are others who pull away, or whom you must pull away from to avoid toxic relationships. All of a sudden your whole life is survival. Your body changes as they cut, (and burn and poison) you're told you don't have long to live. The whole process is overwhelming, shocking, dumbfounding, impossible to relate. So when an organization forms to help us young adult humpty dumpties put ourselves together, it is not only generous and kind, it's profoundly needed. Young adult cancer patients have the worst survival rates. It's scary in here, in this group, and we need support to continue to mend, and flourish. So thank you for helping do that, and thank you in joining us in paying it forward. You have all touched my heart so deeply.

Climb-A-Thon FD Fundraiser

Dan and I found a way to fundraise for other cancer patients to join First Descents on an adventure camp retreat - by fundraising we make the camp free to the cancer patients! Here is my story from the fundraising page. I'm so excited at the idea of more cancer patients getting to enjoy the experience that is FD. It may be crazy but we're hoping to raise $3,000. In 10 days. Yep, we're crazy. PS All donations are tax deductible! (click to donate)

Hi Guys, 

Welcome to our First Descents Climbathon fundraising page! Very soon, on April 18th, Dan and I will rock climb to raise money so that more cancer patients/survivors can enjoy the life changing experience of a First Descents camp. We signed up a little late, so we only have about 10 days to raise money before we climb our hearts out. Our goal, in the three hour time slot, is to do 50 climbs between the two of us. Is that insane? Yes it is. But, if we divide it by two, that's 25 climbs apiece, then divide it into three hours and it's less than 10 climbs per hour per person. Is it possible? I don't know! But good gopher we're going to give it our all. 

My lovely blog readers, friends, and family, have heard me sing the praises of what a First Descents adventure camp did for my morale, my confidence, my soul, my spirit. It was epic. I also gained profound friendships, soul siblings. They're family. Please help us support First Descents and its mission to provide amazing outdoor adventure programs for young adults impacted by cancer. Please consider making a donation. I can't emphasize enough how excited I am to be raising money so that others can enjoy what I've already been able to experience.

As many of you know I was diagnosed with a brain tumor on April 13th, 2010 at the age of 29. I had my first brain surgery on the 27th of that same month. It was an awake crainiotomy. They literally put me under, sawed open my skull, woke me back up and dug around in my brain with electrodes, and tools, to determine what was tumor tissue, and what was healthy brain tissue. During the process I was joking with the doctors and answering their questions - it was wild! They awake craniotomies in cases where the tumors grow dangerously within important areas of the functiong brain. For me that area was speech, language, and movement. I was at risk of being paralyzed on my right side, of being unable to process or use language.

Not long after the eight hour brain surgery, my body created a blood clot in my brain along with hemorrhaging in the tumor cavity. It required a second, emergent brain surgery. When I came out of the second brain surgery, I was paralyzed on my right side. I couldn't say more than a one syllable word. I didn't know the months of the year, or the days of the week for that matter. I couldn't recognize everyday items. I couldn't walk. I couldn't feed myself, or even wipe my own bum. The doctors and nurses said I would not get better. And they were almost right. It took shy of a full year to learn how to read  again, and run the way that I used to, the way I loved. I still get better every single day. 

I have since had a second brain tumor grow, and it was resected. I have been doing active treatment ever since (two and a half years). My treatment protocol is intense and dedicated. I've flown to other countries for immunotherapies, I swollow hundreds of pills a day. One of my main treatments must be refrigerated, and it requires applications of medicine every four hours. (This is how I have to insert the medicine up my nose every four hours.)

When I went to my First Descents camp I was nervous because of my treatments. I thought  I wouldn't be able to enjoy all of the activities. But the First Descents crew, especially "Honeybucket", made sure that I had my medicine, going as far as strapping the cooler of my treatments to her back as we climbed. (My medicine is in a cooler in that gigantic backpack.)

For the first time since my diagnosis I wasn't the weirdo doing treatments, or the girl who had to stay home because of seizures. I was free. I was supported. I was normal in a sea of my peers. Just writing those words, remembering the freedom, has caused me to start crying happy tears. This is what I want to share with others. I want to pay it forward so that no other cancer patient ever feels alone, or weird, or isolated. We are not meant to be alone, solitary. It puts a damp cloth on the fire of our soul.

There is no pressure here, but if you can't make a donation at this point, please help me reach my goal by sharing this page on Facebook and Twitter. Or, even better, send an e-mail to friends you think might be interested in contributing and include a link to my page!

Thank you for loving me, for supporting me, and for helping me pay it forward.

With love,

"Coconuts" (and "Huckleberry" too!)

Want to donate? CLICK HERE

First Video Post: FDX

I just made my first video post. Talk about awkward. Let's hope I get better at this.....

Please Forgive Me

Sometimes I wonder what the hell I've done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don't see is that I get so tired. I get these brain flu episodes. I can't explain it; I can't anticipate it. When I don't feel well, when I can't get my brain to unfuzz, I don't blog. I don't complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I'm missing healthy brain tissue, tissue that I'm sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they're only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I'm known for not putting things off, but there's a fine line between putting things off and not being an alarmist. In the meantime I'll focus more on diet, lowering inflammation, and regular exercise, and meditation, and prayer, and rest.

I'm wondering if a portion of it is stress, these issues, or the majority for that matter. Another thing that I don't tend to write about is that I get contacted daily via email, text, phone, by other friends with cancer, and also several times a day new people find me. Right now two of my closest cancer friends just found further metastasizes. And that was just in the past 24 hours. Those two girls, along with another of my closest friends who also has active stage 4 cancer, need me. And I adore them. I love them. Then I get other people that need help and direction, and I'm happy to do so; those emails are a joy. I want to help people survive, but then I get other emails, so so so many of these emails, of people that don't tell their husbands, their parents, their siblings, their children, that they are battling cancers, and tumors, or diseases, and they come to me for camaraderie, and to vent, and to find a source of support. But the thing is that I am only one person, and I am already exhausted, and scared, and trying to remain healthy. Stack on top of that, my friends whom I adore, whom I want to save, whom I want to cure, whom I want to be around for decades and decades. I want them to be around for a lifetime. And I'm virtually helpless. I'm stuck here. I'm just me. I research for them, I brainstorm, but it's not enough. I want to do more. I want to be there. I want to take it away from them. I want to be the superhero that snags the ticking time bomb of cancer and flies it away at supersonic speeds to another galaxy, returning in the nick of time so that we can all be saved. (Sorry neighbor aliens.)

I want to help everyone. I want to give you strength, but each time I give my strength I have to be replenished too. I can not continuously give. I can not be everyone's rock. From the time I was young I have internalized other people's plights. I was one of those kids who would cry for starving children. When I read your emails, when I hear people's fear, I feel it. I can not live removed. So what I have to say right now is that I am asking those of you who reach out (and as you read this please know that there are tens of people daily, this is not singled at any two or three people) and are carrying the burden in the dark to open up to your friends, and family. Not only will you need that strength and love and support, but also, as my dad recently reminded me, it makes them feel better to be a part of the journey. They appreciate being involved. They want to help us. Of course, you don't have to do anything you don't want, but I guess this is my cry to you, I can not carry everyone else's burden. I can carry a few, but this is not normal stresses. This is life and death, and my friends are a high need group, and in order for me to be a good friend, and be able to handle the reality and research and emotional support to help them, I have to focus and know my limits.

I feel horribly guilty that I can't be everyone's friend, that I can't have relationships with everyone who reaches out. I hear the fear in your voices. I feel what you feel. I want to help. I want to fix. I am so sorry that I can't do it all. I'm so sorry that you're going through this. Even though I'm writing all of this, I hope that you still feel comfortable reaching out if you have direct questions. I really appreciate it when they're short. It's especially the long emails that get me. It takes so long for me to read and think and analyze - it zaps me. I am incredibly capable, but I have limitations, and I have to be able to triage. I can't be attached to my computer and phone all day, it isn't healthy. And the subject matter is so heavy, so dense, so dark.

I'm sorry that I had to post this message. There is nothing more that I want than to help, but I am only one woman. And I'm not trained for this. I'm not built for this. And my heart, which thankfully is quite large (probably big like my huge noggin), is reeling. It is deeply bruised, and hurting for my two First Descents camp friends who have had such horrible news. Fucking cancer.

I'll leave you with this quick video, it's about angiogenesis and cancer. There aren't any great anti-angiogenesis drugs for brain cancer that will cure, but don't forget that food does matter. We can eat things just because we're hungry, or because it makes us feel temporarily better, or we can make our food serve a purpose, to make it count. There are all these little things that we can read up on and learn about to take charge. I'm not trying to imply that diet is enough. I'm only imploring you to get curious, read up, research, Google stuff, and find what empowers you. There are so many times with cancer when we feel helpless, and scared, but there are actions that can help. Never give up. You are capable just within yourself. In any moment you can make choices to change. It's all in you.

Venom-ing All Over Town

Sorry I'm not posting much these days. I can't seem to get my thoughts together, which sucks because I have so many stories. It's times like this that I can't help but be afraid that the tumor is growing back. I can't remember even basic things, let alone important details. It's ridiculously scary. I realize that stress messes with the mind, and I've been doing a lot since Moab, in fact just a couple of days after I got back I flew to NYC for my most recent immunotherapy shot (it was so fun to see you Nate, Miriam, Sol & Larry!!) - but still, it feels different. But maybe it always does.

I talked to my dad the other morning (maybe it was even yesterday - it's all such a blur) and we started the process of scheduling my next MRI which, once approved, should fall on October 25th. I had a total and complete breakdown just scheduling the scan. I'm so scared. And I hate that I'm scared. So I did the only thing I thought to do, I reached out to my FD campers, knowing they would understand. And within moments I was surrounded by love and support. They get it. They know that fear intimately, an ominous cloud, the Grim Reaper hidden in its' dark folds, red eyes glowing.

My brain may be fuzzy, tired, not-connecting, sad, scared, out-of-wack, but I made a deal with my friend "Crush" (Katie) that I was going to make it to the gym every day, Monday through Friday, from now until the MRI. I only have to be there for five minutes (although so far I've blown that out of the water). It's a trick to get me moving, to distract me. A rule to get me out of the house, and out of my situation.

I used to just chill at home most of the time because of the venom, and its' applications (gotta refrigerate, have to find a spot to lay down, etc.), but when I was with First Descents, on our final long three pitch climb, our FD Instructor/Camp Facilitator/Friend "Honey Bucket" climbed up the mountain with my venom strapped to her back so that I didn't have to sit below in the car by myself. It was profound. It changed me. Somehow it had escaped me that I could stuff a cooler into a big pack and go. To get nuts and live; to live like a normal person, not a hermit. (Sorry hermits, I still love you.) So I've been off on park benches, on rocks, on anything that will sustain me, dropping chlorotoxin into my nose. I've grown thicker skin, ignoring the stares, the odd looks, the whispers.

Honey Bucket with venom in tow

Venom-ing at JFK by myself (super tricky photo op)

Venom-ing on top of Mt Si

Venom-ing on a walk with Dan

So, again, I'm sorry that I'm finding it hard to think straight, that it's hard for me to formulate blog posts, but I'm sure you understand, and I appreciate the compassion. For my sanity, I must get out of the house and move my body, or it feels like I will evaporate, or disintegrate, or spontaneously combust, leaving only fingernails and hair in my wake. (I don't know why the hair and nails would remain, it's just a hunch.) Off to bed. With love, Jess

Moab in Pictures

Still at cancer camp - it's even better than I could have imagined! I keep conquering big walls, looking down, and thinking to myself, "Yep, I just did that." 

And I couldn't have done it without my new friends. My tribe.

I'm living in an alternative universe of the most amazing breed of people. How have I not reached out (in person) to this community before? I've really been missing out.

Joining My Herd

My lovely, timid, garden finally produced her first cucumber! (I'm pretty sure it's my fault for under-watering.) There is nothing more delicious than snipping a warmed-by-the-sun cucumber, and taking a big ole bite. The flesh was soft, giving way to a watery crispness. Yum!

I have some pretty exciting news. Remember when I mentioned that this year, my 34th, would be a time of challenges? That I was redefining fear in my life? Well, on Sunday I am flying out to Moab, Utah for a week of rock climbing. It's through a program named First Descents. I applied expecting to hopefully make it into a program for next year, but just a few weeks ago I received an email about a cancellation so I quickly started jumping through hoops. The program I was trying to get into was surfing in Santa Barbara, and I was stoked, but after my physical and final documents made it to their medical team, it was decided that because of my history of seizures I'm not allowed in their water programs; I at least have to be seizure free for a year. (There goes the river kayaking, too!) But, as a very kind gesture, they sneaked me into a rock climbing program instead. I'm so nervous.

Oh ya, did I mention that all the attendees are cancer fighters and survivors?!? That's the part I'm most excited about. I've written about my isolation before, about how hard it can be when you're fighting tumors or cancer, that you can't relate on the same level with your friends, or even your family.

"First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."

I can't wait to join my herd. (Does that make me a cow?) I can't wait to make friends. I can't wait to laugh! I can't wait to freak out from the heights. I can't wait to kick some rock ass. I can't wait to sweat. I can't wait for the challenge. I can't wait to earn my fear. I am so sick of shooting up out of bed from nightmares. I'm sick of nightsweats. I am sick of sensing tingles, and changes in my tumor cavity, always wondering, Is that the tumor? Am I feeling angiogenesis, a new blood vessel feeding Hermie, helping him grow? I'm sick of fearing brain tumors. I'm sick of fearing fear. It's not that I want to change how fear plays a role in my life, it's that I am changing how fear plays a role in my life. I am taking control now.

I feel guilty taking a week long vacation while Dan works. I feel guilty taking time off of my life, my research, my job helping my friends fight their cancers. There won't be an internet, or I've been told it's spotty, so I'll literally be gone. I feel guilty and lucky that I get to go on this free trip, and get this amazing experience. I feel like this will be a game changer. That it will be a catalyst, empowering me, humbling me, recharging me. In my life, at each turn, I just keep getting gift after gift. Who gets to live like this? This girl. And she's damn grateful.