Wednesday, September 24, 2014

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.

5 comments:

  1. Thanks for the cameo with my big, goofy glasses at the LUNG FORCE Walk kickoff! Super stellar photo. YOU are the reason I do what I do. Thank you for raising your voice and sharing your story...and being hilarious and honest with your commentary.

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  2. It was great meeting you too! I'm so glad you are living it up and coping well with Xalkori. Keep it up for a long time!!!

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  3. I think we may need to order "Don't Cut Me Off, I Have Lung Cancer" bumper stickers. Who's in?

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  4. Hi Corey, GREAT POST, I feel bad that we didn't meet up in Boston earlier. I am on Xalkori and I was sick as a dog the day of the conference in Beantown. Your post reminds me that I need to travel more and work my scans around my travels not the other way around. I am going to France, never been to Europe. Thanks for reminding me what I love, I have been a professional patient for entirely too long, but it's better than the alternative. I too LOVE Colorado! I will keep up with you! Peace and love, Kyle

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  5. LOVE the blog...Happy that you are OUT there!...I was registered to run/walk in the Hollywood run...but came down with a horrid migraine instead....I think Emily and her family are amazing people...I am in this fight,as well....I have friends in CO.....and I am amazed at the beauty of that state!...I would love to get there again to hike....back to your blog......the last paragraph was so right on.....I know we all can say AMEN to those feelings....Mara XXX

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