Epic Experience, Boston, SF

Allow me to set the scene.

Yes, this is what I'm looking at as I type this. Not bad huh?

Okay, now that the scene is set for no particular reason, let me catch you up on the last few adventures. I really hate that I've procrastinated on writing, because now I have to catch you up on my Colorado Epic Experience, Boston, and San Francisco.

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So I'm not saving the best for last, because as Kelsey and Brandon would say, "Ain't no one got time for that!" It gets to go first. Good god, I love white water kayaking. I'm not being sarcastic this time! Those of you who know me well know that when my dad took the family white water rafting years ago he took us on a class 4/5 (there are only 5 classes) and I just about shit my pants. But I absolutely loved the white water kayaking. Epic Experience really spoiled us with incredible adventures and kayaking took the cake. But even better than the little excursions were the people. Every individual there was incredible. I was the baby of the group but was surprised by how quickly I bonded with everyone. I was even more surprised that this group was more wild and booty shaking than friends my age. Loved it.

Every second was filled with some fun activity. Horseback riding, white water kayaking, bowling, hot spring'in, hot tub'in, dancing in the short bus, the list goes on. I would have been happy with just the 7W dude ranch alone, the scenery was remarkable.

I could go on about every fond memory of this week, but instead just want to give a shout out to this wild group in case they're reading: Mama Lou, Mr. Fuzzy, Wingman, Pamster, Hollywood, MC, Scrat, Matteo, SoCo, SuperTrooper, Diva, Dudeman, Flash, JoJo, Frosty, Yolo/ Camp whore, Princess, Tree, Otter, Doc Holiday, Strings, Windfall, Hickory, and Glide, Thank you! You guys made the experience, can't thank you all enough. And yes those are their real names.

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Guess what, I've changed locations. Here's where I'm typing now and watching old people do tai chi. Very relevant.

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Two days after Epic Experience was Boston with the Pops. Best part was seeing two of my soul sistas, Brett and Carson. But the excuse for doing a Boston trip was to attend the Acquired Resistance Forum for us lung cancer mutants. So much information, and it was remarkable hearing this information from the top researchers. I owe them my life, literally. The most valuable information was that regarding what drugs to take should the Xalkori stop working. And my favorite part was learning how quickly this research and drug development is moving. As most cancer people, I am also really intrigued by immunotherapy and can't wait to watch this area develop further. I will admit that the room seemed to have a slight solemn mood, very different from the Bonnie J. Addario Lung Cancer Foundatino 5k I walked Sunday (talk about that in a sec), but it was surreal and wonderful meeting some of my LC virtual friends in person.

                                  LOL

Fellow ROS-1'ers (Thank you Tori for being my Ros-1 LC mentor!)

The Carson Corey kayak

This was my first trip to the east coast, so I had to do all the touristy things, ie. the Freedom Trail (totally recommend), Boston Museum of Fine Arts (recommend even more), checked out Harvard (Cal is better), and kayaked on the Charles River (was gorgeous). Besides hanging out with Brett, Carson, and Timmy Toes, eating was my favorite part (real shocker). Best Italian food I've ever had was in North End, the restaurant started with an A (I'm so helpful). And we had some drool-worthy oysters at Mare, also in North End. Other things I learned about Boston: the people are obsessed with Dunkin Donuts and Bostonian accents are not pretty.

Oh, and George Washington had a male camel toe. Proof is below.

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Now you may have guessed from the pictures that I'm in San Francisco. You're wrong! I'm in Spain! Just kidding, but I swear I am going to Europe someday soon, preferably when I can drink (a lot) again. So yes, I came up to San Francisco for the Bonnie J. Addario Lung Cancer Foundation 5k. Besides being a solid excuse to come up to the Bay Area to see my friends, the 5k provided the perfect opportunity to meet and hang out with some LC peeps. Some of my friends joined me on Team EmBen to walk/run the 5k. As always it was uplifting and wonderful to see Emily and her fam and how cute they all are together, and it was also comforting to meet other LC youngsters, Molly, Natalie, Lisa, and Brian. The overall mood of the event was hopeful and inspiring, which is really the most important thing a cancer kid needs. Yeah, I may have been the youngest one there but I'm kind of getting use to that. If anything this young face is good at getting research money for lung cancer! So go donate now. SF is glorious as usual, and other festivities included Oktober (drunk) Fest at the pier and last night was karaoke in Japantown, so I'm a happy kid.

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When I'm not traveling and am at home, I'm usually bored out of my mind, so I've been doing advocacy work with Lung Force and may start doing some advocacy for a company that does molecular testing to identify driver mutations (ie. my Ros-1). I recently attended a kickoff event in LA put on by Lung Force and Generation Humanity. I gave a quick speech that wasn't too painful and really loved the event because it was full of young adults, which I was not expecting. It felt so good to have my fellow peers rally for a cause so near to my heart (well about 6 inches away from my heart in my left lung to be exact). Our OC Lung Force walk is coming up, Nov. 8th! and you will be there, so go register, now.

LA Lung Force 5k kick off partay

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I know everyone wants medical deets and updates but I don't have much to report this time. I'm still only on the Xalkori, lower dosage, and don't have side effects. My first scan to see how well the Xalkori is working will be near the end of October, which might be hard to fit in. I have back to back trips during October: Portland to Denver to San Francisco to New York, so I have about 8 days when I'm at home to chose from for scheduling a scan. I'm probably an oncologist's worst nightmare, but Dr. Reckamp seems to get me and knows I just really love traveling and being busy. That reminds me, during my last appointment Dr. Reckamp gave me the a-okay to move and work. I'm leaning towards Denver....I know I know, last time I said San Francisco, but I think I need the outdoors more than I realize and Kelsey is just really good at persuading so we'll see.

Convincing smiles

Convincing Denver sunset.

You know, I almost just ended the blog post right there, but it didn't feel right. So here's your dose of honesty corner. I don't want people to get the false sense that life is easy, I was diagnosed and now I have a great excuse to go travel and not work! False. As much as I love random trips, I miss routine, working, and normalcy. Although most days truly are happy and I can achieve some sense of normalcy and get cancer off my mind momentarily, some days it hits me really hard. I've accepted that this is my new normal but sometimes I just really really hate it. Yet, after a short pity fest I usually have a moment of clarity and realize that if all I want is a guarantee of endless time, what would be the point if I just use all that time worrying about the future and not being present and doing something that will make me happy in that moment. I also realize that everyone has something. It's easy for me to walk down the street and envy others, assuming that their cancer-free lives are perfect. But who's to say they aren't thinking the same thing about me? Everyone has something that they're dealing with. And I will admit that every once in awhile I wish that you could tell that I have cancer, particularly when it comes to asshole drivers..."You just cut off a 22 year old with lung cancer asshole!"  So that's your dose of Corey's Honesty Corner, if anything I hope you'll live in the present a little more and not cut off lung cancer patients on the freeway. Adios.

It's an on/off kind of relationship

It’s my Xalkori and I’ll cry if I want to

How boring is a 3-part story? This girl was diagnosed with lung cancer, she then tested positive for targeted therapy, so she took a pill daily and all was well. I like to keep things interesting. So my liver graciously took the time to add some suspense to my story.

After being on Xalkori for 2 weeks, my liver enzyme numbers spiked (revealed via blood test, AST & ALT numbers for my curious LC friends out there). My oncologist at St. Joe’s casually said I would need to stop taking Xalkori for a couple of weeks, but not to worry, this was a common thing. Um, this was not a casual thing for me. So like a dramatic schoolgirl I went to the bathroom and cried. All I heard was no Xalkori for a couple of weeks! What the hell is a couple of weeks? 2? 10? Screw the liver, let’s get crazy with this drug. But it turns out we need our livers to live. Go figure.

If you painted this scene for me a year ago (me crying in a bathroom because I wasn’t allowed to take a pill), I’d be extremely confused and ask if it was some creepy club drug that I was addicted to. (You can tell I don’t do drugs by the fact that I just called it a “club drug.” I’m embarrassed for myself.) But I really liked my Xalkori, we were just getting to know each other.

Let’s take a moment to mourn

Sensibly, my next question was “how do I get my liver to calm the hell down?” And here comes my downfall. Under my breath, I mentioned to my doc how my fever, a few weeks back, started exactly one day after playing beer pong and drinking champagne with friends. Oops. Now, my dear friend Alcohol may not be at fault at all, but the poor guy cannot be ruled out as a contributing factor. Therefore, I will not be drinking alcohol for the next 12ish weeks, maybe longer. Let’s now take a moment to mourn this. Tragic. And I was one of the few 22-year-olds who knew good beer! I swear. And I was just starting to really understand wine. Now if there’s a stellar IPA that I have not tried, you’re damn right that I’m going to take a baby sip of it to offer my expertise.

But there are perks to ordering shirley temples at a bar. First, I save money. Second, after my trip to the bay this past weekend, I realized that going out and dancing and living really was not that different, if at all.

Still, I appreciate your moment of silence as we say goodbye to tipsy Corey. And who knows, my liver may relax and welcome the Xalkori, so I may say yes to wine tasting before I know it.

I miss home

“You don’t know what you had til it’s gone.” God, that’s got to be one of the worst clichés. But ugh, it’s true! I miss the bay area. I miss my friends. I miss Bart. I miss clean air. I miss normal temperatures. I miss fog. I miss real food. I don’t miss hipsters.

This past weekend I went to San Francisco to see all my babies and had too good of a time. No, literally too good, because now all I want is to be living on my own in the bay. Don’t get me wrong I love love love my parents and they truly are a good time, but I do miss my old ways. So I’ve decided to shape up and start applying for bay area jobs. I want to stay home for at least the next 3ish months, because 1) I love my parents, 2) I love my dad’s cooking, 3) I like taking random trips, 4) who actually likes working?, and 5) I really like City of Hope and my oncologist there. So if I could find a job that starts around Novemberish and have an apartment lined up in San Francisco, I’ll be pleased. If anyone wants to work on this task, that’d be great.

The weekend consisted of running, shopping, laughing, eating, dancing, and karaoking. Some of you may be wondering what happened to Denver? What happened was I really like my friends in the bay area, that’s what happened. (Sorry Lee, love you! Never say never.)

SF pics!

my pretty presidio run

 my pretty presidio run #2

 Rella's office has a 5-star kitchen. Es not fair. But go Nitro! such a cool work atmosphere.

They'll hate me for putting this picture up, so I did. 

Tourists for days!

This world traveller had just flown in from India after a month long trip and guess where her first stop was? Lunch with me! So so sweet. Now keep changing and saving the world.

Cancerlebrities

I got to meet one of my cancerlebrities, Emily (canerlebrity= cancer+celebrity for you oldies). And now she’s a dear friend. There is nothing more comforting than someone who knows exactly what you are going through, and without even having to ask. It also helps that she has a similar attitude and sense of humor. We have a theory that lung cancer simply looks for positive, happy athletes and says, “Mmm, yeah she fits the bill.” Really scientific. Harvard call me up if you want to research this theory.

Emily (Bennett) Taylor is a wonderful, needed advocate and is the spokesperson for a study that I’m participating in. I think it’ll excite many of you since the most common question I get is, how did this happen to you? The Genomics of Young Lung Cancer Study is looking at the potential driving mutations and causes of lung cancer in people like me. (Put on by the Addario Lung Cancer Medical Institute and USC's Cancer Center.) 

Okay, this video of Emily is 2 years old but it’s hilarious. Enjoy.

And here’s a nice ABC news splice on the study. Please click on the link and watch it!

http://abc7.com/240920/

Speaking of advocacy I recently got to do a radio interview at Saddleback College. It was really fun and it started my relationship with Lung Force (focuses on the increase in lung cancer among women), which is a part of American Lung Association. I’ll be a Lung Force Hero, and we have a team for their walk/run in November, team Beastie Girl. I’ll send out more info on this soon.

Oh yeah, I’m on Xalkori again

Now I realize that the beginning of this blog makes it sound like I’m still not on Xalkori. But I’m not going back to edit it. The truth is I am back on it! And I love it. It’s a pretty shitty feeling having cancer and not doing any form of treatment for it. I’m now on a kinder dosage (200mg twice a day, rather than 250 mg twice a day), but am saving my old pills in case I work my way back up to that dosage. I’m drinking a ton of water, exercising, not drinking, and eating healthy, and don’t foresee my liver getting pissy again, but I’ll be doing weekly blood tests to watch it.

Buddha Corey

I’m not one for cheesy revelations, but I do have one for you.  A number of people have asked why/ how I’m able to keep positive, because my attitude is pretty much exactly the same as it was pre-cancer. My typical answer to this question: “I don’t know.” But now I’ve thought about it more. Some outside factors that likely contribute include: 1) I’m asymptomatic, 2) my friends and family, 3) I’m healthy and can exercise, and 4) I’m ROS1 positive (aka we found my driving mutation). Sometimes I wonder if my mind is in some ways protecting me, as though my PMA, as my mom calls it, (aka positive mental attitude), is a psychological protector. Who knows. But my cheesy revelation for the day is that happiness is in a lot of ways a choice. Some of these choices are big: what your job is, who you hang out with, whether you are active, etc. But you can also pause for a second and make a conscious decision within yourself to be happy, at least in that very moment. I must admit I was thinking about this during a run, so it could have simply been a runner’s high. And I’m now realizing this is really difficult to explain in typed words. But you get what I’m saying, right? No, you’re definitely not, maybe we’ll try again later.

*Dr. Wood Disclaimer: Depression is not a choice. Mental health problems and chemical imbalance obviously deserve medical attention and someone can not simply choose that they disappear.

“Your life looks so fun!”

That’s probably because it is. Next week I’ll be flying to Denver for an Epic Experience, a week-long adventure for young adult cancer thrivers. We will be white water rafting, horse back riding, and! there will be 2 massage therapists there. After, I come home for 2 days and then leave for Boston. So my liver better stay #$%*^&@ calm! Just kidding, I’ve forgiven the little guy and we’re on good terms now.

Lastly, again I so appreciate all the lovin’ I’m getting. And I am aware that it is hard to comment on these blog posts. I don’t even know how it works.

<3

Xalkori, Fever, Dog, Sin City

Time for an update! I’m a little overdue for some people’s questions, but alas, the time has come. I’ve had questions sent in from all over the world: how has it been on the Xalkori? Have you barfed yet? How do you achieve such luscious, silky locks? And here are your answers.

Medical update (special shout-out to all you ROS1’ers! Get dat Xalkori!)

The day I picked up my pills also happened to be the same day as my first “Stupid Cancer” meetup dinner. So I took my first Xalkori pill at my first Stupid Cancer dinner, how appropriate.

Here I am taking a pill in style.

I take it twice a day and the first week I had no side effects! Except for a slight vision effect that I somewhat enjoy. The effect gives certain lights and movements a surrounding glow, kind of matrix like. The second week I had a slight fever and some aches. My oncologist wasn’t sure if it was a side effect or virus but told me to ride it out, which I did, with impeccable timing…my fever disappeared right before leaving for Vegas. The second week I also experienced constipation, such a blast, while at the same time hardcore craving vinegar. So the bloated look from the constipation, (not to mention the drug causes some swelling), coupled with the vinegar craving made me seem like one badass pregnant woman. Luckily the fever is gone now and I was even able to run again this morning.

I Have Friends

Everyone says this and it’s so damn annoying, but I’ve never said it: My friends are better than your friends. Guaranteed. But really, I have some incredible rafikis in my life and here’s a picture of us drinking bubbles in some bubbles. #bubble.

 These gems came to visit me 2 weekends ago. They drove all the way from Berkeley and two of them were little cherry-on-top surprises, I had no idea they were coming. Such happiness and good times.

Which brings me to these beautiful ladies.

As if their smiles weren’t enough, their humor gives me stomach cramps, (does not help the constipation), from laughing so hard. My theory is that if I laugh enough I'll cough up a lung, preferably the left one, and all is well! 

Step 1 after a cancer diagnosis: go to Vegas

So after being on Xalkori for only 2 weeks, laying on the couch with a fever for a week, and having lung cancer and all, it really only made sense to go to Sin City. But in all seriousness, so glad I went. My mom, aunts, and I did a quick weekend trip and a few of my friends happened to be there at the same time. I knew my mom and aunts were funny, but I kind of forgot they were that funny, so many laughs, which felt so good.

And although I treasure going to bed at 10pm, I decided I have to at least pretend I’m 22 at heart and not 70, so I joined this beauties (below) for da clubs. It felt good to be surrounded by sweaty, drunken bodies everywhere. Kidding. I really did love it and dare I say it, would go again.

Overall great Vegas trip and it was nice to actually forget about the cancer every few moments.

Also, Vegas truly has not changed for those of you who haven’t been there in awhile. You still never win at gambling and you can’t actually afford the drinks you’re buying (ps. A water bottle at the pool club we went to cost $13, I know I sound like a grandma saying that but it seriously blew my mind. We used the water fountain.)

When I showed my mom and aunts this picture of the pool they said it looked like a human soup. They were not far off. 

 Doggy

Our family got a dog! And she is so sweet and adorable. And here’s a pic.

She even sits in the jacuzzi with us, she just hopped right in, such a babe. 

Ask my dad, her name is Ella. Ask me, her name is Edna. 

Making moves in the cancer world

So far I’ve gone to a Stupid Cancer meetup and 2 events at UCI for young adult cancer patients. One of the UCI events was a presentation on essential oils followed by a support group talk and the second was on sexual well-being. I’ve pretty much signed up for any and all events because I certainly have the time now. 

Stupid Cancer meetup

Rather than walk you through each dinner and presentation, just know that cancer patients and survivors are the most incredible people you will ever meet. It is almost incomprehensible how strong some of these people are. One guy I met has had four brain cancer relapses. That’s #(%*&^ insane. Yet, he's marching right along, he works as a software engineer and is so outgoing, kind, and happy.

Also, a lot of people are not aware of the hardships post cancer. I certainly wasn’t. Fertility problems, early menopause, scanxiety, PTSD, the list goes on. It’s so much easier to picture the cancer road as 3 steps: diagnosis, treatment, and done. Ha. I’m quickly gathering it’s far from this. Which explains why a good number of the people at the Stupid Cancer meetup had been out of treatment for more than 5 years.  Clearly they find the support important throughout life.

Lastly, another interesting find during these support events was how few know about targeted therapy. I don’t know what other cancers have it as an option, but some people weren’t quite grasping that I’m only a pill and not doing any traditional IV chemo.

The ladies I refer to in my head as lung cancer sisters, have been some of the biggest supporters. Via blog, texting, and emails, I’ve been communicating with some younger lung cancer ladies and feel so much less lonely and can get a better grip on the side effects.

Jeopardy! Lung cancer version

Some fun facts:

·      The median age for lung cancer patients is 70.

·      Only 2-3% of lung cancer patients are under 40 years old. (would love to know the percentage under 30).

·      My drug without health insurance costs over $12,000 a month. Cha ching

·      My drug was approved by the FDA in Nov. 2013.

“What’s next Corey?!”

In August I’ll be doing an “Epic Experience” week in Colorado (told you I’d get in on dem free young adult cancer outdoor adventures) and in September I’ll be going to Boston for a conference for us lung cancer mutants (which I think is under 35% of the lung cancer world). I’m also doing a Bay area trip fairly soon so come find me. Lastly, I get to see the genius Dr. Reckamp at City of Hope again in about a week. (She’s known for being aggressive with treatment and last time she told me not to rule out surgery for the future…so I need to figure out exactly what she meant by that.) My best guess is that my next CT/ PET scan will be in about a month, to monitor the drug’s magic.

Until next time my beautiful, captive audience, adios.

Fabulous "Cancer Card" from Stupid Cancer. It says, "The bearer of card has the right to do pretty much whatever they darn well please, including, but not limited to shunning people who repeatedly ask, 'how are you feeling today?'"