Howdy folks. Some of you were interested in seeing the footage of my Forbes speech. And here it is. They put the whole conference on youtube...pretty cool. There's another youtube video of the afternoon Q/A too. (search Forbes Healthcare Summit 2014 for the whole summit...the afternoon video is called Big Data Inspiration). There were some really interesting and engaging debates throughout the whole day.
Wednesday, December 10, 2014
The blog has over 10,000 views and in 14 different countries, from Sri Lanka to Ghana. Which means my 4 readers are traveling quite a lot and hitting the refresh button too many times. But seriously, thanks for reading...it feels like yesterday that I was writing my first post, unsure of what the response would be. You'll be pleased to know the response has been good. And those of you in France and Greece give me a call, those countries are high on my to do list.
In other news, I'm so excited to tell you guys about the Forbes Healthcare Summit in NYC. I'm going to include details this time, so to all you 21st century kids with short ass attention spans this is the part where you just scroll through to look at the pictures.
Second to being related to Timmy Toes, speaking at the Summit may have been my greatest honor so far. It was a gathering of the cream of the crop in: the medical field, data/ technology/ innovation in general, health insurance, and research. I found out just before the Summit that these participants had to be invited and then pay over $1,000 to attend. Did not help the nerves. I was originally scheduled for an afternoon panel but was switched to a morning spotlight session...which was actually for the best. My invitation to speak was via Foundation Medicine...the peeps who did my genomic sequencing to discover my ROS1 mutation.
Now I'll skip to the climax...my speech actually went well! But it was thanks to my mentor from Foundation Medicine, Deborah Morosini. You can google her yourself, but take it from me she's fabulous. Her sister, Dana Reeve (who most of you know as original Superman Christopher Reeve's wife), passed away from lung cancer and was one of the first major advocates for the disease. Deborah helped make my speech more personal and moving and instilled some confidence in me so I could own the room (which by the way was beautiful and overlooked Central Park at Columbus Circle). Even more surprising than the speech going well was the response from it. I even brought two ladies to tears...success I suppose? And all throughout the day these top docs were approaching me telling me I was inspirational and motivating. What!? Me? It was crazy, I was so happy to put a face to their work and to be a walking success of hundreds of hours in the lab. (If only these doctors knew that this 22 year old still occasionally, maybe excessively, listens to Taylor Swift, One Direction, and is overly excited for the upcoming Minions movie.)
It was also fascinating to be on this side of the discussion...numbers, prices, more prices, trials, data organization, trends, and the future..most exciting part. The whole Summit will likely be going on Youtube soon...I'll let you know when. But here's a great article talking about my speech and another theme of the day: astronomical drug prices.
New cancer treatment represent major breakthroughs but who is going to pay for them
New cancer treatment represent major breakthroughs but who is going to pay for them
After the Summit, Deborah spoiled me with an amazing NY experience: nails, hair, Russian Tea House, On the Town the play, yummy foods, and really insightful conversations. Such an amazing, unforgettable trip. (We even saw Jamie Foxx.)
The bathroom alone in the hotel was enough for me. The price for one night at this hotel was more than my monthly apartment rent in Berkeley. I'm not exaggerating this time.
Pictures of the Summit.
Afternoon Q and A.
Steve Forbes came up to me after my speech! How crazy is that? He was so kind and appreciative that I shared my story.
The beautiful Deborah Morosini.
Tea time with Deborah at the Russian Tea House.
On the Town play with Deborah. Wonderful, recommend seeing it. My fav song was Carried Away.
Walking through the Ny streets with Ny veteran Deborah.
Right after NYC, I was off to Vermont to hang with the lovely, talented Carson, live it up, and finally see Burlington...a little cold but loved the city.
Next week I have the amazing opportunity to visit Foundation Medicine's headquarters in Cambridge, MA. I get to finally tell them thank you in person and give a quick speech at their holiday party. So cool..my cancer journey has truly been lucky in many ways.
Thanks for reading. And to my cancer brothers and sisters, I think hope is the most powerful medicine...don't ever lose it! Until next time, kwa heri.
Friday, November 28, 2014
Happy late Thanksgiving! I've never been super into "let's say our thanks proclamations," which may signal that I am a self-absorbed OC brat, but! this year I'm a little more into it. I'm incredibly thankful for the family and friends who have made this cancerville journey so much easier. One of the worst things about cancer is feeling alone, so thanks for joining the fight, we're winning! And I'm so so thankful for badass medical researchers (thanks for keeping me alive) and for my friends pursuing medical school...great choice, I gave up med school after organic chemistry.
I wanted to do a blog post on the things I have learned since starting an intimate relationship with the big C. So I created a practical guide to cancerville for all of you.
BUT, let's not get ahead of ourselves. First I must tell you about 2 organizations that are rocking the lung cancer world and remind me that the future is only getting brighter.
Many of you joined me on Team Beastie Girl for the American Lung Association LUNG FORCE 5k. ASANTE SANA. Thank you! That was a beautiful turn out. Our team raised $4,460 and the walk as a whole raised over $40,000. And thanks OCC for your killer volunteer turn out. Amanda and Krisztina, love you ladies, you guys went way beyond the call of duty. The event had such fun, uplifting energy, which isn't always easy to create for cancer events. I walked away from the event just feeling really happy, which sounds so cheesy but I don't know how else to put it. It's also a plus that the money was going towards lung cancer research that helps keep peeps like me alive, so maybe that's a major plus.
Right after the walk, my jet-setting ass got to go straight to the airport to fly to SF for the Bonnie J. Addario Lung Cancer Foundation GALA. I knew it'd be a hell of an experience, but I didn't think it'd be as fun and booty-shaking as it was. I had the opportunity to be a part of their video. At first it was weird seeing my crying face on a jumbo screen, and then have people recognize me the rest of the night. But I am so so glad I did it. It brought me closer to other patients, doctors, researchers, and people who have the same priorities and dreams as me. Rella and I joined Emily (my fav LC mentor) and her family and friends at a table, aka the party table. The champagne and food were to die for and the dancing was a highlight.
Now I thought this part would be fun to write. Here are some of the things I've learned from my journey through cancerville.
1. Everyone's cancer journey is very different.
After meeting and communicating with different cancer survivors, it quickly became clear that everyone has a different experience. Case in point: me vs. Ronald (changed his/her name). Ronald decided to keep his/her LC diagnosis private, with the exception of a few people. I threw my face and story out there about 2ish weeks after the diagnosis. I kind of went full throttle and wrote a blog, #overload. One path is not better than the other, and I like that strangers can't tell I have cancer. But I just find it interesting that not only are the cancer cells between two different people entirely different (even with the same cancer), but their experiences, thoughts, reactions, etc. are so different.
2. Brings me to: sometimes pity is hard. Now don't apply this to others because I think I may be slightly abnormal when it comes to this, but sometimes the pity is the hardest part. Which makes no sense since it is a natural reaction from other people. But the other day I was happily walking into the grocery store to pick up a little pre-made tray of sushi, when I ran into an old family friend. After being told "I'm just so sorry...can't believe this happening...I'm praying so hard...ladedablah" I walked out feeling a little different. I have to appreciate her sweet intentions and I'm fairly certain I just have a really weird personality that doesn't respond well to "I'm just so so sorry." "It's okay madame, you didn't bring this upon me, and turns out I'm doing pretty well...I just really need to get my hands on this sushi."
3. The little things do matter.
Just because I have cancer and had to rethink life a little does not mean I shouldn't sweat the little things. I like sweating the little things. It reminds me that life goes on, that life is going on.
4. Which reminds me that I do want to hear your problems. I may have kind of a big problem, but that doesn't mean I don't want to hear about how you fell in the middle of Target and sprained your wrist.
5. I am in love with medical research.
6. There is a slight competition among the different cancers for mula. I find it interesting and weird.
Right now I'm in beautiful Denver, then go home for a day, then fly to Nyc for the Forbes Healthcare Summit with the wonderful Foundation Medicine, then visit Vermont, then back home, then Boston for Foundation Med again. Who says cancer can't have perks? So I'll tell you about those trips lata. kwa heri.
Sunday, November 2, 2014
So this post is a little overdue, my bad. But the Xalkori is freaking working and then some! Can I get a hell yeah. I had my first scan since starting the Xalkori mid October and my doc said, "Well done, your scans are gorgeous." The nodules in the lung are gone, the lymph nodes are clear, and what is in the bone looks to be shrinking and healing. Thank you Xalkori, I had a feeling we were going to get along quite fondly.
I promise a better post in the near future, as soon as I get a break from popping champagne bottles. Have to update you all on my wonderful month of traveling and......it's lung cancer awareness month!! Get ready for some stellar, convincing spam from me that will compel you to spread the word and advocate for lung cancer research. ;)
Wednesday, October 15, 2014
Half way through my back-to-back trips!
During the beginning of October we all ventured to Portlandia for Kelsey's (mi sista) and Brandon's first marathon, and of course, THEIR ENGAGEMENT, which was beautifully performed by BDon at the finish line. We are already so excited for the wedding because there are 3 priorities: good beer, good wine, and dancing. Recipe for major success.
Besides celebrating good times, we got to see fam: Beena, Andy, Sahana, Toots, and Mig. <3. Most of our time was spent laughing and eating and drinking, which sounds basic, but then again that's really all I ever want to do. We were there for about 5 days and the weather was perfect, the sun was out the whole time which is a Portland anomaly. We explored downtown Portland, and its breweries and eateries, and went for runs. But I'm aware that everyone's probably just interested in the marathon engagement.
Here's the video:
Laughing so hard at the guy in the yellow vest that makes BDon kneel down again for a pic. Just what you want to do after 26 miles.
I joined LeeKels and Bdon for the first half of the marathon, (was almost caught for sneaking into the marathon, almost), and then ditched them for the tortuous second part where the true colors come out and nipple blood starts (<only you male marathoners will understand). I then joined a very nervous Kwi, TT, and Auntie Mig for the finish line, where we could watch Brandon surprise Kels with a sweaty ring. Overall the race and engagement went beautifully, which surprised me just a little.
Beena, the wonder chef, making the most amazing Indian food.
Besides hanging out with LeeKels, BDon, Savannah, Kendra, Ginny, and Nala (well, scratch Nala), the Walk the Moon concert was my favorite part. After Brandon got me a last minute ticket (heroic move), I was expecting to walk into a concert with about 2,000 people. Instead we walked into a bar with about 50 people. Mind blown. Here's a video:
In the video, they're singing one of my fav songs, Quesadilla. And for those who are already fans, their next album comes out in December.
I leave for San Fran tomorrow and will be there for a few days and then the grand finale trip is NYC.
Yes, I'm realizing this blog post has little to do with cancer, but how freaking great is that. I think I deserve a break. But I do realize I don't have endless funds to be a spoiled jetsetter. So first off, thanks mom and dad for spoiling me, love you. And secondly, I should probably get a job. I'll admit I haven't been job hunting that hard (if at all, oops). And part of me does actually want to use that Cal degree that cost my parents a fortune. Still leaning towards Denver, but it's about to snow and I literally wear a snow jacket when the temp is below 65, so we shall see.
Wednesday, September 24, 2014
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.
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.
Guess what, I've changed locations. Here's where I'm typing now and watching old people do tai chi. Very relevant.
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.
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.
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.
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
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.
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.