Newsletter

Friday, August 15, 2014

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!


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

3 comments:

  1. Corey you are amazing, your positive attitude has inspired me in so many ways to use that outlook in my out life! I've been praying for you and hoping the best. Keep being awesome :)

    -Holly Porter

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  2. Corey....I'm so happy that your Auntie Kim is sharing your blog with all of her friends. Are you growing weary of everyone using that 'inspiring' word when describing how you make us feel? Well, it's true! As my son gets ready to head back to Cal next week, I 'get' it when you mention all the things you miss about the Bay Area....all the same things he has been talking about all summer. I hope you can make your dream a reality really soon! Many best wishes....the chocolate chip cookie delivery lady, Nancy :)

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  3. Corey - not only are you an amazing writer, but you're also incredibly inspiring! I'm so happy to call you a dear friend :) Keep on fighting girl, and enjoy your Epic Experience - you deserve it!

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