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.
You're definitely out of the will....
ReplyDeleteCorey 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
ReplyDeleteCorey, this is Coach Green. What is your email address?
ReplyDeleteCorey, 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)
ReplyDeleteYou go Glenn Koko! When you come to Denver I'm taking you out on the town ;) miss you keep it up Coco
ReplyDeleteI 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.
ReplyDeleteI 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
ReplyDeleteHi 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.
ReplyDelete- Lisa