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.
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?'"