Xalkori, Fever, Dog, Sin City

Time for an update! I’m a little overdue for some people’s questions, but alas, the time has come. I’ve had questions sent in from all over the world: how has it been on the Xalkori? Have you barfed yet? How do you achieve such luscious, silky locks? And here are your answers.

Medical update (special shout-out to all you ROS1’ers! Get dat Xalkori!)

The day I picked up my pills also happened to be the same day as my first “Stupid Cancer” meetup dinner. So I took my first Xalkori pill at my first Stupid Cancer dinner, how appropriate.

Here I am taking a pill in style.

I take it twice a day and the first week I had no side effects! Except for a slight vision effect that I somewhat enjoy. The effect gives certain lights and movements a surrounding glow, kind of matrix like. The second week I had a slight fever and some aches. My oncologist wasn’t sure if it was a side effect or virus but told me to ride it out, which I did, with impeccable timing…my fever disappeared right before leaving for Vegas. The second week I also experienced constipation, such a blast, while at the same time hardcore craving vinegar. So the bloated look from the constipation, (not to mention the drug causes some swelling), coupled with the vinegar craving made me seem like one badass pregnant woman. Luckily the fever is gone now and I was even able to run again this morning.

I Have Friends

Everyone says this and it’s so damn annoying, but I’ve never said it: My friends are better than your friends. Guaranteed. But really, I have some incredible rafikis in my life and here’s a picture of us drinking bubbles in some bubbles. #bubble.

 These gems came to visit me 2 weekends ago. They drove all the way from Berkeley and two of them were little cherry-on-top surprises, I had no idea they were coming. Such happiness and good times.

Which brings me to these beautiful ladies.

As if their smiles weren’t enough, their humor gives me stomach cramps, (does not help the constipation), from laughing so hard. My theory is that if I laugh enough I'll cough up a lung, preferably the left one, and all is well! 

Step 1 after a cancer diagnosis: go to Vegas

So after being on Xalkori for only 2 weeks, laying on the couch with a fever for a week, and having lung cancer and all, it really only made sense to go to Sin City. But in all seriousness, so glad I went. My mom, aunts, and I did a quick weekend trip and a few of my friends happened to be there at the same time. I knew my mom and aunts were funny, but I kind of forgot they were that funny, so many laughs, which felt so good.

And although I treasure going to bed at 10pm, I decided I have to at least pretend I’m 22 at heart and not 70, so I joined this beauties (below) for da clubs. It felt good to be surrounded by sweaty, drunken bodies everywhere. Kidding. I really did love it and dare I say it, would go again.

Overall great Vegas trip and it was nice to actually forget about the cancer every few moments.

Also, Vegas truly has not changed for those of you who haven’t been there in awhile. You still never win at gambling and you can’t actually afford the drinks you’re buying (ps. A water bottle at the pool club we went to cost $13, I know I sound like a grandma saying that but it seriously blew my mind. We used the water fountain.)

When I showed my mom and aunts this picture of the pool they said it looked like a human soup. They were not far off. 

 Doggy

Our family got a dog! And she is so sweet and adorable. And here’s a pic.

She even sits in the jacuzzi with us, she just hopped right in, such a babe. 

Ask my dad, her name is Ella. Ask me, her name is Edna. 

Making moves in the cancer world

So far I’ve gone to a Stupid Cancer meetup and 2 events at UCI for young adult cancer patients. One of the UCI events was a presentation on essential oils followed by a support group talk and the second was on sexual well-being. I’ve pretty much signed up for any and all events because I certainly have the time now. 

Stupid Cancer meetup

Rather than walk you through each dinner and presentation, just know that cancer patients and survivors are the most incredible people you will ever meet. It is almost incomprehensible how strong some of these people are. One guy I met has had four brain cancer relapses. That’s #(%*&^ insane. Yet, he's marching right along, he works as a software engineer and is so outgoing, kind, and happy.

Also, a lot of people are not aware of the hardships post cancer. I certainly wasn’t. Fertility problems, early menopause, scanxiety, PTSD, the list goes on. It’s so much easier to picture the cancer road as 3 steps: diagnosis, treatment, and done. Ha. I’m quickly gathering it’s far from this. Which explains why a good number of the people at the Stupid Cancer meetup had been out of treatment for more than 5 years.  Clearly they find the support important throughout life.

Lastly, another interesting find during these support events was how few know about targeted therapy. I don’t know what other cancers have it as an option, but some people weren’t quite grasping that I’m only a pill and not doing any traditional IV chemo.

The ladies I refer to in my head as lung cancer sisters, have been some of the biggest supporters. Via blog, texting, and emails, I’ve been communicating with some younger lung cancer ladies and feel so much less lonely and can get a better grip on the side effects.

Jeopardy! Lung cancer version

Some fun facts:

·      The median age for lung cancer patients is 70.

·      Only 2-3% of lung cancer patients are under 40 years old. (would love to know the percentage under 30).

·      My drug without health insurance costs over $12,000 a month. Cha ching

·      My drug was approved by the FDA in Nov. 2013.

“What’s next Corey?!”

In August I’ll be doing an “Epic Experience” week in Colorado (told you I’d get in on dem free young adult cancer outdoor adventures) and in September I’ll be going to Boston for a conference for us lung cancer mutants (which I think is under 35% of the lung cancer world). I’m also doing a Bay area trip fairly soon so come find me. Lastly, I get to see the genius Dr. Reckamp at City of Hope again in about a week. (She’s known for being aggressive with treatment and last time she told me not to rule out surgery for the future…so I need to figure out exactly what she meant by that.) My best guess is that my next CT/ PET scan will be in about a month, to monitor the drug’s magic.

Until next time my beautiful, captive audience, adios.

Fabulous "Cancer Card" from Stupid Cancer. It says, "The bearer of card has the right to do pretty much whatever they darn well please, including, but not limited to shunning people who repeatedly ask, 'how are you feeling today?'" 

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. 

"You've got lung cancer." Yeah, good one doc. good one.

Seriously?

You've got to be kidding me. ME? I have lung cancer? Excuse me doc, but I've never smoked, in fact I've done quite the opposite...I've run 8 marathons, eat fairly healthy, and don't even have the slightest cough. I can just picture my lungs snickering, "8 marathons? eh. Half ironman? not so much. Climbed Kilimanjaro? not working for us. We need a real challenge. We want to give lung cancer a go." Challenge not accepted! Yet here we go, don't have much of a choice here, so here comes the next challenge that I've oddly decided to share with all of you (the honest reason why I'm blogging this is because I really didn't like the other therapy options presented by the pros: journaling, no..too much like school, art or photos or music, no...I'm so not artsy, so blogging it is).

Ze phases

My reaction went a little like this:

Phase 0.5: slight denial
Phase 1: I hate healthy people. (don't worry this didn't last long, I love you all again).
Phase 2: I want to be someone else. Anyone else. I'll even taking the fate of that homeless man that hoots and howlers the weirdest things.
Phase 3: WHY, tears, few more tears. This is bullshit. I don't even like attention. And I understood the big picture early on in life: its the people and relationships you have that bring happiness, nothing else. I don't need cancer to show me this.
Phase 4: "Woe is me is so last year." It is what it is. Being negative and morbid is so exhausting and not fun. I don't know what made me switch from phase 3 to phase 4, it was literally somewhat of an overnight switch, but I'm sure glad it happened. Books on young adults with cancer helped way more than I expected. My favorite is Kris Carr's Crazy, Sexy Cancer, I recommend it if you're curious of what this roller coaster experience is like.
I did not expect to adapt this quickly psychologically, but I don't mean to paint a rosy picture. This is incredibly hard. But moping around would just create another win for cancer, and I'm a competitive bitch.

Logistics, bleh 

I know many family and friends are interested in the medical deets so here they come, in a shorter, sweeter version. I have adenocarcinoma (non small cell lung cancer) and most of the little tumors (technically called nodules because they are all under 3cm) are in my left lung with some small mets to my spine and pelvic and right eye. And here's the real kicker: I'm asymptomatic! Aka I have no symptoms whatsoever, except.....for a slight flashing in my right eye. That's right, a 2mm bump behind my right eye is what initiated the scans in the first place. So my right eye is my knight in shining armor. Without it, I suspect I would have gone another 2 years or so with no symptoms and no treatment. Scary. The eye lead to a PET/CT scan, which led to a needle biopsy of one of the lung nodules.
My thoracic surgeon, (Dr. Gharai, one of the most incredible people I have ever met), later removed the largest nodule I have (had), which was just under 2 cm, the size of a peanut. Although my tumors are quite small, they are widespread, (docs often describe them as beads), so chemotherapy is the chosen treatment. No one knows why this has happened, nor why there has been a large increase in young nonsmokers developing lung cancer, especially women. Genetics? Random? That damn Southern California smog? Who knows. But at the same time, a small part of me kind of understands. 77,000 young adults (18-39) are diagnosed with cancer in the U.S. every year. Why the hell would it not be me? It could easily be me. Who ever said I was invincible? You truly never know what is going to happen, which is scary, but is also why I understand the phrase "live day to day" a lot better now. A day (really even a moment) spent stressing is just more lost time.

Ze latest medical step

Right now we are waiting for the molecular results of the tumor we submitted to pathology. Now this part is impressive: targeted therapy. The future is here. If my cancer cells are positive for certain mutations there are drugs that can target the cancer cells and destroy them bastards. If my cancer cells are negative for all the mutations, my tumor will be submitted for PDL1 testing. If positive I will do immunotherapy. supercharges your antibodies to attack the cancer cells. If negative for PDL1, I will do a chemo cocktail of carboplastin, avastin, and taxol? I already forgot the names, but here comes the disappointment for my audience... I will not lose my hair. I know we were all curious what I looked like bald, hell, even I was a little curious, but some chemo drugs don't affect your hair. I've got an army of doctors: 2 oncologists, palliative doc, radiologist, eye retina specialist, therapist, and sassy nurses. But more importantly if you have ever met my family you know how close and strong we are. Not gonna lie, if I were an outsider I would almost be disgusted by how much love, camaraderie, laughter, and support there is in our family, (but I hope you guys aren't picturing the kissing family on SNL.....too far...but that is representative of my relationship with my cat). And of course my extended family and friends have showered me with love and support and encouragement that truly makes all the difference. 

Peeps reactions

This part is kind of interesting. People's reactions to the words, "I have cancer," really go all over the place. My favorite reaction was, "Did you get your medical marijuana card yet?". My least favorite reaction, "Omg, I can barely breathe." <<Oh, you can hardly breathe? Maybe we should go to the emergency room. It could be lung cancer. You're right, I'm being too harsh. Most reactions were sincere and often followed by words of encouragement. It really is amazing how quickly people rally around you. But I also find the stigma attached to lung cancer a bit annoying. Which reminds me, I have not been focusing on the statistics, I recommend you do the same. How many nonsmoking 22 year olds do you know that have lung cancer? I feel like 20 year olds should have their own subset of stats.   

I also find that people tend to follow your lead in regards to talking about cancer or reacting to it. We all know I'm just a wee bit sarcastic, so I can't help joking about this from time to time. If you have questions, just ask me. But don't bring up topics on death.....were you born yesterday? Come on. 

Goals

My doctors have told me I need to write down some goals and plan for the future because I am going to be okay but need to avoid dwelling on how my life has become somewhat frozen right now. Although some of this may seem personal, oh well. A cancer diagnosis seems to strip you naked (figuratively and literally), so here we go: (in no particular order)

1. Backpack and travel through Europe

2. Do a Southeast Asia trip

3. Fall in love and have kids (line up boys, nothing sexier than a cancer patient)

4. Return to Tanzania

5. Sky dive

6. Only do jobs that truly mean something to me/ that I enjoy (goodbye money, hello nonprofit world)

7. Keep my family healthy and make them do screen tests every week, just kidding, kind of
These were just the first few goals that came to mind. I'm sure I'll be adding to it weekly. 

Shape up or ship out

So yes this really sucks. But I'm ready for the fight, mostly because I have to be. I found out about this a week after graduating from Cal. I had accepted a job working with kids in Denver and was ready to live it up for a year. But I've been thrown one more challenge. This summer has been one of a kind to say the least. I still plan on moving to Denver, soonish, and living it up. 

In the mean time I'll be kicking it with the parentals which means lots of good food and wine and running everyday. I'm grateful to be asymptomatic and feel 100% normal, physically, and now that I have plenty of time I'll be doing a few trips in the near future: bay area, Denver, Vegas, and NYC (hopefully), so I'll be calling you to sleep on your couch!

I suppose the next time I update will be when we figure out the chosen treatment (so maybe 3ish weeks?) If I'm really bored perhaps before then. Love to you all, kwa heri! (<quiz! go figure out what language that is).

I later realized that this was taken the day of diagnosis. Honestly this was not a conscious "day-of-diagnosis" pic. I was more in denial and bored watching tv and took a selfie. But now you all get to see what I look like haggard, weird, and frazzled with no makeup. Embarrassing, yes, but I had to include it. 

Checking out the chemo room. Forgot to mention the radiation I had done. That's my mask in the right corner. I had my eye met radiated for 14 days, since that was my only symptom. Right eye vision isn't stellar, but could bounce back fairly soon. (Also fun side note: I have stumped every doctor I've seen so far because they have never seen lung cancer metastasize to the eye, usually it goes to the brain..which thank god my hasn't! knock on wood). 

Me and momasita at graduation a week before the chaos. Talk about mom of the year award, she has temporarily left her job so I can hire her as my medical navigator, insurance fighter, supporter, and bff. 

Okay, this picture has nothing to do with a cancer blog but how cute is this picture of my mom? Killing it. 

Fam bam.