Tuesday, July 8, 2014

An update already!

I love you
Holy $%&%#@#$%. You are all so incredible. Never in a million years did I expect that big of a response. Your encouragement and love truly makes a difference and adds even more spark to my fire. I guess this also means I’m committed to the blog? Kidding, I really did find writing it therapeutic and empowering.

Major news (<said in Posh British accent)
The reason I am updating rather early is because I finally have some good news. Yeah, you read that right, GOOD news. I told you the future was here. Welcome home targeted therapy, we’ve been waiting your arrival. I have a mutation!!! Never thought I’d say that so happily, but let me say it again, I’ve got a freakin mutation.
Okay, some of you may be confused. I myself am not mutated, contrary to popular belief, but my cancer cells have an identifiable mutation meaning I can go the targeted therapy route by taking a pill called Xalkori (<I know my name is in it! How cute it that?). This statistic makes it even more fun: only about 1% of adenocarcinoma (lung cancer) peeps have this mutation. Say what? Bizarre odds, but so is getting lung cancer at 22, so it’s sort of my style.
I’ll hopefully be getting the pills next week (after insurance authorizes it, insurance really does run medicine, let me tell ya, but that can be a whole book by itself). I’ll be taking them twice a day. The pill is known to have a high response rate in patients and moderate side effects. I’ll still be doing scans, liver & kidney tests, maybe some EKG action etc. just to monitor things. But taking a pill= no iv= lots of freedom= traveling and/or potentially moving= happy Corey. Very scientific.
Unfortunately this isn’t a long-long-term cure. I will eventually develop a resistance to Xalkori, after months or years, and will either change to a “second generation pill” (currently in the process of being developed), or immunotherapy, or maybe I’ll be eligible for surgery. I’m hopeful this pill could make me eligible for surgery, which could mean removing my whole left lung, dramatic, I know. But living> running and high altitudes. Before this cancer chaos, I didn’t even know you could live with one lung but apparently thousands of people do it. So cool. Talk about adaptation.

The randoms that I guess are funny
Apparently some of my experiences that I find boring, others find amusing. (Credit for the revelation: Brandino).
1.   We’ve had a lot of fam/friend gatherings over the past few weeks. I was just telling a friend how I sometimes catch people staring hardcore at me. Granted this is usually after a few several glasses of wine, but what are they thinking as they stare at me? “She doesn’t even look like she has cancer?” “Do I have cancer?” “I wonder if she secretly was a hardcore chain smoker since infancy?” “Oh, poor Corey?” Usually they look away as soon as we make eye contact, but it is somehow funny. So next time you’re drunk don’t stare at me with puppy dog eyes, stare at me with some fierceness, smizes at me (oh hey Tyra!).
2. Cancer card. Okay, I swear I haven’t used this for real, yet, but I can’t resist using it every once in awhile on fam and friends. For example, the last big dinner gathering we had my sister and I were fighting over which seat my mom would take, the one next to me or my sister. (Yes, we are 4 years old and proud of it.) I totally pulled the cancer card and pleaded, “But mommmm, you have to sit next to me, I have cancerrrrr.” She didn’t sit next to me. She sat next to my sister. I’m not even kidding. Ask my sister.
3.    Another thing that is really weird is that I can say, “I run (almost) every morning with lung cancer.” That is seriously weird to me. The other day I ran 9 miles and after the run I realized I just ran 9 miles with lung cancer. I don’t know why, but that is really really weird to me.
4. There is a whole young adult cancer world that I’m excited to delve into, if only for the social scene. Yorba Linda doesn’t quite do it for me, although I did miss the Costco shopping with madre, nice to have you back Costco samples. I also plan on taking full advantage of the free outdoor, overnight excursions (rock climbing, rafting, kayaking, surfing, paddle boarding, canoeing, camping, etc.) that are for young adult cancer patients and survivors.

Again, I love you all so much. Thank you for reaching out to me and being so supportive. <3


Ps. If you’re interested in better understanding ROS1 mutation because I did a shitty job of explaining it, here’s a link that explains it fairly well to the lay person: http://outlivinglungcancer.com/2012/06/26/a-new-mutation-on-the-block-ros1/

Farting around in the doc office. Kelsey: "Oh my god you guys, this is so cool, I can see dirt and old makeup in my finger. This is so gross. Wow."

He's going to kill me for this, but look at how white my dad is! I'm chilling next to Casper! Good thing he went swimming that day to finally get a dose of vitamin D. Sorry Timmy Toes. 

Fourth of July! It was a party of 25, awkward I only have pics of us 4. #Selfish. 


8 comments:

  1. You're definitely out of the will....

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  2. Corey you are so funny and strong and cute and I am so proud to know you and even prouder to be related to you! Love you! Troll

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  3. Corey, this is Coach Green. What is your email address?

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  4. Corey, there is no doubt you will be calling yourself a cancer survivor! You have the right attitude and fight to do this. I think you you have found your calling as a writer! You're amazing. We are praying for you and know the outcome will be a good one. Vicki Sommers (Holly Porter's Mom)

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  5. You go Glenn Koko! When you come to Denver I'm taking you out on the town ;) miss you keep it up Coco

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  6. I love your blog. I hate that you have joined the lung cancer club but I have no doubt you'll fight it with everything you've got. Your family sounds awesome, and having a strong support group (family or not) makes a big difference.

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  7. I love your blog! Your humorous outlook will come in handy on the crappy days. I also have ROS1 mutation was diagnosed stage 4 at age 40. I've been on xalkori for 14 months (in remission for 10). Wishing you the best

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  8. Hi Corey - So sorry to welcome you to this club, but glad you're blogging! If you have any questions, please don't hesitate to reach out. My blog is lisa.ericgoldman.org or email me at goldmanlisa [at] gmail.com.
    - Lisa

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