Real Life

Sometimes I find it hard to tell the difference between real life and fiction. This is probably due in no small part to growing up obsessed with books, stories, and plays. I tend to see life through the lens of a story: what is that character's arc? Where is the surprising twist? The "all is lost" moment? I have always been particularly drawn to stories of a plucky young heroine/hero (Buffy, Ender, Katniss, Tris) facing seemingly insurmountable odds in a bizarre reality, who somehow finds a way out in the end.

This past weekend I attended a conference in Boston for people with stage IV lung cancer, whose tumors have specific genetic changes (EGFR, ALK, and ROS1) that can be treated with targeted medicines. It was remarkable to hear from the rock star doctors who are conducting the research that is keeping me alive. What was possibly even more powerful, however, was to sit in a room full of a hundred people who are on this same crappy journey as me. Many of these people I had already "met" and they have become an important support system for me, my lung cancer family. But all of my interactions with them have taken place in a virtual space, social media or patient/caregiver online groups. At times I have wondered if they actually exist or if my mind had created them as a coping mechanism (for the Buffy fans out there, think S06E17 "Normal Again"). I'm not naturally a very huggy person, but I felt the urge to hug each and every person I met there. I'm embarrassed to admit that the words "You're real!" escaped my lips at one point. 

All of us in that room are living in a weird dual reality, looking (and often feeling) quite normal but knowing that we have advanced, incurable cancer - "eventually terminal" as one person said.

It's a strange reality to live in, which is part of why I feel like the line between real life and fiction sometimes seems so blurry. I think part of what makes it all seem so unreal is the juxtaposition of things. I spend my days with my adorable kiddos who are so full of life, then check my phone and read about another person entering hospice. I look and feel relatively normal, but know that my odds of being around 4 years from now are less than 4% (if you believe the statistics, which some say are inaccurate because of how quickly things are changing - THANK YOU RESEARCH).

I am so glad I went to Boston last weekend (where I also got to catch up with my old Rough & Tumble Theatre crew!!!). I geeked out on cancer research, and meet face to face with so many people that have inspired, informed, and encouraged me throughout this journey. Beth, Luna, Robyn, Jon, Leslie, Andy, Kathy, Jeff, Corey, Carole, Robyn, Tony, Nicole, Dan, Bernie, Craig, Kris, Ria, Bonnie, Kyle, Sharon, and everyone else, thank you for being real!

6 Easy Ways You Can Help Stop Lung Cancer

I am alive because of research.

This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED. How freaking amazing is that?!?

Sadly, lung cancer research receives very little funding. In the wake of the impressive IceBucketChallenge, several articles have come out addressing the disparity of funding for diseases. The image below, from "The Diseases We Donate To Aren't Always The Diseases That Kill Us," shows that while breast cancer (pink circle) and prostate cancer (orange circle) are very popular places to donate, the number of deaths caused by these illnesses is relatively small (see the corresponding dots on the right side). Both are nasty diseases and I personally know many who are suffering from or have died from them. What this chart says to me is that we are great at donating to these two causes, and both are now benefiting and have achieved high cure rates.

Noticeably absent from this chart is lung cancer, the #1 cancer killer. Below is another version of the graph, modified to include lung cancer. 

See the tiny white dot at the bottom on the left? Compare that to the white circle on the right. Lung cancer causes more deaths than colon, breast and pancreatic cancers combined. Lung cancer in non-smokers is the #6 cancer killer in the US, and it is on the rise in young women.  

So, when I hear about the cuts in research finding it is not just upsetting, it is terrifying. Without advances in research, I would be dead. There is currently another drug in trials - a new and improved Xalkori - that is in the wings for when Xalkori stops working for me. Support for research is vital for me, it the truest sense of the word.

"But what can I do about this?"

I'm so glad you asked. I have assembled an activism smorgasbord for just that reason.

1. For those who like pampering themselves: 

Paint your toe nails purple and email a photo of your purple toes to purpletoes@lungcancerfoundation.org, then tweet and facebook it with #purpletoes. You can get your purple nail polish right from the Lung Cancer Foundation for a $25 donation. Click here for more information.

The girls and I did this a few months ago

 

2. For those who like to get political:

 

The American Lung Association is hosting the Lung Cancer Call-In Day on Thursday, September 4th to ask congress to increase research funding. All you have to do to participate is call your congressperson on Thursday during regular business hours. 

"But I can't remember who my congressperson is!"

 That's okay, you can look it up easily right here. All you need is your zip code.

"But I'll never remember to call on Thursday!"

Click here to request a reminder email to be sent to you Thursday morning. They are making this so easy!

"But I've never called a politician before. I'm nervous!"

That's okay, it's going to be my first time calling my congressman, too. Let's all come back here to the comments section of this post after we do it and post what it was like. We can debrief together!

 

3. For those who like mingling with the stars: 

 

Stand Up To Cancer is hosting "the biggest television event of the year" on Friday, September 5th at 8/7 central. And as a flip of the old call-in-to-donate method, in this program the stars will call YOU!

"Paltrow and Joel Gallen of Tenth Planet Productions will co-executive produce the Sept. 5 broadcast, live from the Dolby Theatre in Los Angeles.  ABC, CBS, FOX and NBC, along with ABC Family, American Forces Network, Bravo, Cooking Channel, Discovery Fit & Health, E!, Encore, Encore Espanol, EPIX, ESPNEWS, FOX Sports 2, FXM, HBO, HBO Latino, ION Television, LMN, Logo TV, MLB Network, National Geographic Channel, Oxygen, Palladia, Pivot, SHOWTIME, Smithsonian Channel, Starz, TNT and VH1 are donating one hour of simultaneous commercial-free primetime for the nationally televised fundraising special on Friday, September 5, to be broadcast live from the Dolby Theatre in Los Angeles. The show will stream live on both Hulu and Yahoo."

There is already a lot of buzz building on social media about this event, with the hashtag #IStandUpFor.

Katie Couric favorited a tweet about me!

4. For those who have a bunch of cash burning a hole in their pocket: 

 

There are several excellent lung cancer organizations that will generously help you extinguish the flames by accepting that cash!

• Bonnie J. Addario Lung Cancer Foundation
• Dusty Joy Foundation
• Lung Cancer Alliance
• LUNGevity Foundation

5. For those who have just a little bit of cash burning a hole in their ... phone:

 

Text LUNG to 27722 to make a $10 donation to the Lung Cancer Alliance.
It's quick and it's easy. Who doesn't love easy advocacy?

6. For those who like doing silly stuff and putting their mug on social media: 

Join the #WhipLungCancer campaign. Here is my video:

"But wait a second, aren't you just jumping on ALS's IceBucket bandwagon?"

Actually, no. The IceBucketChallenge, in its current incarnation, was started by another lung cancer family  to raise funds and awareness for lung cancer. I don't want to take anything away from ALS; it's a terrible disease and deserves its share of the pie, too. But we are trying to bring some attention back to where it started, with lung cancer, but in a new way. Plus I got to introduce my kids to a whole new food group. Who knew food could be sprayed out of a can?

~~~~~

This weekend I will be in Boston attending the Acquired Resistance Patient Forum, hearing from several of the rockstar docs who are doing the research that is saving my life. I'm really excited to hear what they have to say, plus I will get to meet a bunch of my fellow lung cancer folks in person! I can't wait to get a photo of a room full of people with stage IV lung cancer, who are living well because of targeted meds. Keep that research funding coming!

Now, don't think that I'm disregarding all the prayers, good vibes, chanting, and more that people have been sending my way. I'm sure all your love and support has played a role in how well I am doing right now. But you know how that old story goes, about the drowned man who went to heaven and yelled at God,

"I prayed! Why didn't you help me?" 

God replies,

"I tried! I sent a log, and then a branch, and then a boat...." 

Take a look through the activism buffet above and see if there is something in there that appeals to you. If not, share this with a friend. Sadly, many of us know someone touched by lung cancer. Let's help turn this death sentence into a life sentence.
 

Changing my name to NED

As I lay in bed this morning, my semi-conscious mind tried to decide if I was ready to face today, a day which entailed finding out if my cancer was, in fact, starting to invade my kidneys as was suspected from my last CT scan. As usual, Jason was already up and taking care of the kids because, well, because he is awesome and because my sleep needs are now much greater than they used to be. I heard him bound up the stairs and say into the phone, "Let me check if she is awake." I was, and I was greeted by the cheery voice of my wonderful PA. "It's good news!" Not only are my kidneys clear, but all the bits of tumor that are left in my lung are dead. There is no evidence of cancer living in my body. I have achieved the holy grail of stage IV cancer, NED (no evidence of disease).

!!!!!!!!!!!!!!!!!!!!!!!!

And it is Jason's birthday! He is quite the good luck charm. One year ago today I got the results of my first scan after starting chemo, the scan which would tell us whether or not my cancer would respond to treatment. Needless to say, a very important and very terrifying moment. 

Two years in a row of great scan results on your birthday, Jason! I got to double celebrate with this awesome crew today.

If you are not an inhabitant of Cancerville, you may be wondering why my CT scan from last week would show something different than the PET from yesterday. It helps me to think of the CT scan as a high-definition camera that takes black-and-white photographs of the inside of the body. It can detect every lump and bump, but it can only show what it looks like, and can't tell the difference between a live or dead tumor, scar tissue, cysts, etc. A PET scan involves injecting the patient with a radioactive sugar substance. It goes through the bloodstream for about an hour and every part of the body that eats up sugar will glow when the patient is in the scan machine. Cancer gobbles up sugar, as do muscles, which is why you are not supposed to engage in much physical activity for a day or two prior to a PET scan.

A fellow cancer patient told me that he was advised not to text while in the prep area for his PET scan. I thought about this briefly while the stuff was going through my veins, but I though just a little bit of time on my phone wouldn't be a big deal. Yes, there was a "no phones" sign, but I thought that probably just referred to talking on your phone. And technically I only replied to one text, the rest of the time I was just scrolling and reading. Fast forward to the end of my scan, when the technician slid me out of the scanner machine and said, "Were you using your phone in the prep?" Uh, yes. "Are you left-handed or right-handed?" Left. With a curt nod she turned and walked out of the room. A few minutes later she returned and said, "I just talked with the doctor. The muscles in your left forearm are lighting up, but he said that is just from scrolling on your phone. You REALLY aren't supposed to use your phone in there!" Busted.

This was my view as I drove off to my PET scan yesterday. 

Such a lovely bunch of well-wishers!

For clarification, these wonderful results don't really change anything. I still have to take my amazing targeted med twice a day (THANK YOU XALKORI!), and I still have to deal with the less-than-awesome side effects of the drug, and I still have to go back for scans every three months, and I still know that at some point the cancer will likely develop a resistance to the meds. Unlike many other cancers, such as breast and prostate, there are no markers that you can track from a blood test. I can't see if my numbers are going up or down as an indication of the state of my cancer. With lung cancer, the only reliable way of knowing (currently) is to wait until it is big enough to grow into a tumor visible on a scan. So, it is quite possible (maybe even probable) that there is some cancer left if there. But, for now, it is just fantastic to know that there is no visible cancer in my body.

And for the punch-in-the-gut portion of this post:

I asked Zander what he wished for when he blew out his birthday candles. 

"I wished that you and Daddy would never be dead." 

A strange kind of boogeyman enters your world when you become a cancer family. I've learned that the thing of nightmares can come from within my own body. We all face the same impermanence and chaos of the world, but a journey like this forces you to come face-to-face with mortality in a way that many others can ignore. I miss that ignorance, and it makes my heart ache to realize that my children will grow up never having known it.

I'm NED for now - and hopefully for a long, long time - but I'm forever changed by this awareness. It's not necessarily a bad thing, but it certainly makes me view this brief blink of time we get on this earth in a whole new way.

That's Great It Starts With An Earthquake

I was jolted awake by Michael Stipe serenading me with "It's The End Of The World As We Know It" and immediately remembered my sister telling me she had been listening to that song some 20+ years ago when our mom called to tell her I had been diagnosed with childhood bone cancer.

Really poor song choice for my alarm this morning, a day when I was waiting for scan results.

Two years ago today I had just returned from the AATE conference, where I had met all sorts of impressive folks, the leaders in the field of Theatre for Young Audiences, and had received an award as one of the up-and-comers.

And today I spent the day at the cancer center.

The results of my scans were mixed. The lungs look stable with a bit of shrinkage on the remaining spots (yay!) and the brain scan was clear (big yay!). The questionable area was my kidneys. There might be something suspicious on them, but they consulted with several radiologist and they couldn't agree if they were really seeing anything or not, so I am heading in for a PET scan next week to get a closer look.

They take away was don't panic yet. It might be nothing. I'll be busy celebrating my wonderful son turning 6 this weekend, so I will keep myself occupied with that. It was this same weekend last year that I was waiting for my first scan results after starting chemo, and I got pretty remarkable results on Jason's birthday (which is just 2 days after Zander's). I hope Jason gets another great birthday present this year. And maybe next year let's plan the scans on a different week.

~~~~~
This song has been going through my head, after the terrible news about Robin Williams. (He was my second choice for my Make a Wish when I was a kid, but Winona Ryder agreed - and we had a lovely day.) What a remarkable actor and comedian, and what a terrible loss to us all. My heart aches for his family and those close to him. I sure hope heaven is real, because he is someone I would really like to meet someday (but not for a long time).

The best of times is now.
As for tomorrow,
Well, who knows? Who knows? Who knows?
So hold this moment fast,
And live and love
As hard as you know how.
And make this moment last
Because the best of times is now.

Fighting the Wrong Fight

I've been following musician Zoe Keating's struggles with their insurance company after her husband's recent diagnosis of stage IV lung cancer with mets to the brain, and it occurred to me how many people in my lung cancer family have fought that same battle. When diagnosed with advanced lung cancer - one of the deadliest cancers out there - we should be focusing on fighting for our lives, and enjoying time with loved ones. Instead, so many of us have to expend our energy fighting with insurance companies.

• Example #1: Zoe Keating's (@zoecello) husband

Zoe has been wonderfully public about this fight, posting images of their bills and transcripts of phone conversations with their insurance company. Thanks to the power of social media, Anthem Blue Cross had agreed to cover his initial hospital stay. Here's hoping they continue to cooperate throughout his treatment.
 
To Read More:
"Read the fine print"- tumbler post that includes photos of the actual bill with denied charges
"As if this isn't hard enough" - tumbler post with initial denial of the claim, along with media's response

Choice quote: 

"Coverage for the requested service is denied because the service does not meet the criteria for “medical necessity” under your description of benefits."

Not medically necessary to hospitalize someone who cannot breathe? 

Status: Resolved (for now)

• Example #2: Janet Freeman-Daily (@JFreemanDaily), blogs at Gray Connections

In her post, "Insuring the Terminal Patient" Janet explains how her insurance company denied her biopsy when her cancer spread to a new location, and the doctors needed confirmation that it was malignant before they determined the best course of treatment. Thanks to her blog post going viral on twitter, the company decided to pay the claim.

Choice quote:

"… in this case the member is already known to have progressive Stage IV Bronchogenic carcinoma even after therapy. Specifically identifying the histopathology of this right upper lobe lesion is not going to affect long-term health outcomes."

Anyone who has been following current lung cancer research (heck, anyone who has been following my blog) knows that taking a biopsy and examining the tumor can have an enormous impact on the course of treatment and life of the patient.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, taking targeted med Xalkori for her ROS1 mutation, currently NED (No Evidence of Disease).

• Example #3: Samantha Mixon (@mixon_samantha), blogs at Keeping my Faith - Living with Stage IV Lung Cancer

Blog post "Breaking up with Blue Cross Blue Shield" tells Samantha's infuriating tale of denial by Blue Cross Blue Shield of Atlanta. She was responding remarkably well to the targeted med Tarceva, and had only a portion of her primary tumor left, so her oncologist thought it would be best to radiate that area (with SBRT) to reduce the risk of it spreading. She continues to file appeals, but currently is stuck with a $116,000 bill, despite, as she said in her appeal to BCBS, "Your radiation oncologist AGREED with mine during the peer to peer review.  He agreed the SBRT was the right course of action to save my life."

Choice quote:

“We understand an appeal was requested because your doctor feels this treatment is medically necessary for you. Based on the information we have, the previous coverage decision can’t be changed. The services are considered not medically necessary….”

So the insurance company understands her medical needs better than her oncologist?

Status: Not Resolved
Stage IV NSCLC Survivor: 18 months and counting, taking targeted med Tarceva for her EGFR mutation, currently has no active cancer (thanks to the radiation that BCBS refuses to pay for).

• Example #4: Kim Wieneke (@aquariusvscancr), blogs at Aquarius vs. Cancer

Kim had been on Xalkori for her ALK mutation for over two years when suddenly her insurance company said she owed $7,000 for her refill. In "Boiling Point" she recounts a day of phone calls that finally got them to reverse this and give her the medicine for the normal price.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, currently on a clinical trial of alectinib for her ALK mutation. Her brain mets are shrinking and her lung tumor is stable.

• Example #5: Me!

You may recall that when I first started on Xalkori, my insurance denied it (I told the story in "Stage IV is No Time to be Timid"). Thanks to blogging and the twitterverse, BCBS called me to let me know they would pay for the medicine. 

Status: Resolved
Stage IV NSCLC Survivor: 1 year and counting, taking Xalkori for ROS1 mutation. 

As you can see, insurance company battles are far from rare. Yes, medical treatment is expensive, but as Zoe points out, 

"Anthem is owned by WellPoint. Did you know Wellpoint CEO Joseph Swedish earned almost $17 million during his first year on the job? Now you know how they can afford to pay him."

$17 million could buy a lot of Xalkori.

That Time of Year

I love summer in Ann Arbor. The weather finally turns warm, I plan the garden, festival season kicks off, and all my favorite annual events roll around again.

This time of year is now also a minefield of poignant memories.

I remember counting down the days last year until the end of my semester, willing myself to make it through that last final, that last presentation, and that last tour performance. I was not overwhelmed by the workload - it was a lot, but I thrived in that environment - for some reason, though, I was totally and utterly exhausted. I had been fighting off recurring chest colds for months, and I just couldn't get ahead of them. I remember giving my research project presentation and having to stop and catch my breath. Just standing and talking had me winded. I slept for a week after exams, and somehow it didn't feel any better....

Today we drove past Picnic Pops, an annual outdoor festival of local high school and junior high bands, and I said to Jason, "Oh! We went to that last year!" And then the memories flooded back. Getting out of breath walking around, struggling to carry the girls, ordering a big cup of coffee despite the heat because my "asthma" was terrible and I though a big jolt of caffeine might help.

I remember talking to my mom on her birthday and discussing how my doctor might try a course of steroids to try to get this asthma under control.

The awesome neighborhood bash Burgers on Bellwood is coming up soon, and I remember that Jason took the kids by himself last year, because by then I had been diagnosed and I was so short of breath that doing much beyond sitting on the couch was a huge effort. (The lovely hosts sent him home with a plate of food for me.) We both thought about but didn't talk about how he better get used to taking the little ones everywhere by himself.

I remember missing Zander's preschool end-of-year assembly because I was having a brain scan.

And I remember leaving the garden completely untouched, to be covered by the fall leaves, then the winter snow. When it started to melt this year, we stood there staring at it, an image frozen in time that was such an accurate representation of how we felt frozen in those early days. We were in a holding pattern, in crisis mode, just trying to make it through the day, make it through the night without having to go back to the ER.

And now thankfully, amazingly, we are dreaming about the future. Still cautiously and with contingency plans, but dreaming nonetheless.

Every day I breathe, everyday I think, I am alive! And that is something wonderful.

Xalkori, a Love Affair

Scan results today, and the verdict is...

...drumroll, please...

More shrinkage! All that is left is a tiny spot in my left lung, 7x13 mm. Amazing!

Thank you Xalkori, thank you Pfizer, thank you researchers for this miracle medicine! I understand why another Xalkori patient made a music video about her love of this drug.

Thank you to all the wonderful people sending their love and support our way. I am truly one lucky gal.

Also, this blog was named one of the best lung cancer blogs of 2014! As I said to my fellow bloggers in the list, let's do it again in 2015.  

What Are The Odds

I've been reading a book as research for a wonderfully terrifying endeavor Jason and I are working on* and I came across a section that talks about the poor odds of a small business succeeding.
*More on this soon, I promise! There is lots of good stuff a-brewing.

I couldn't help but chuckle.

That's supposed to scare me? You wanna talk to me about long odds? So I did some digging. (Okay, googling.)

For every 10,000 kids in the US, 1 or 2 will be diagnosed with cancer each year.
That's a 0.01-0.02% chance.

Let's narrow it down to osteosarcoma, my childhood cancer. In the US, there are about 5.6 diagnoses per million people each year.
That's a 0.00056% chance.

About 2 out of 10,000 people will be diagnosed with lung cancer before the age of 40.
That's a 0.02% chance.

Now recall that I have a rare driving mutation, ROS1, that occurs in about 1-2% of non-small cell lung cancer.

Then there are the gulp-worthy stats about lung cancer survival times, and I have already (THANKFULLY, CONTINUING TO KNOCK ON WOOD) made it to the good side of the median.

For something more fun, let's consider the odds of having identical twins: 3 in 1,000, or about 0.3% chance.

The odds of all of these things happening to the same person?!?

All of this is to say that when I read that 80% of small businesses fail within a year, I see that 20% are still around a year later! Those are some of the best odds I've dealt with in a while.

I don't mean to be cocky, it's just that odds have continually proven to be meaningless to me. Also, tomorrow is my 3-month scan, so I think the nerves are making me punchy. Fingers crossed for good results on Tuesday! Let's keep beating the odds.

The Other C Word

This weekend I saw an excellent production of To Kill a Mockingbird (seriously, if you live in the greater Ypsilanti/Ann Arbor area, run, don't walk to get tickets).
 
It was full of beautiful, powerful moments, but Atticus' lines about courage really jumped out to me and have been bouncing around in my mind ever since he spoke them. He explains that courage is

"knowing you're licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do."

I've often been told how brave I am in this cancer journey (and in my first). That has never made much sense to me, as I'm not doing any of this by choice. I would much rather NOT have cancer, and NOT put my family through all of this. Sure, great life lessons, live in the moment, blah blah blah, but I would really prefer not to have cancer at all. Really. REALLY. Really really for real.
 
I am, however, surrounded by some very courageous people. Perhaps the most astounding and least acknowledged are the caregivers, the partners, the spouses. They voluntarily attend countless appointments, put up with scanxiety, hold the patient's hand while awaiting daunting test results, and take care of rambunctious munchkins when the patient needs to sleep. (That last one might be specific to me.) None of this is required; it is not their bodies that are resentful hosts to this beast, yet they do it willingly. That is courage.
 
The other group who knowingly walk into this fray are the doctors and scientists. Sadly, I need to qualify this since I have come across too many that have the - usually unspoken, but not always - belief that people with stage IV cancer are not really worth the trouble and should be sent home to die. Thankfully, there exist some doctors and researchers that dare to dream. I'm talking about the handful who choose not to give up on us, even when the odds of living a long life with metastatic cancer are, well, pretty close to nonexistent. These are the rockstar docs (I've become a bit of a fan girl for some of them). They face hopeless situations with the crazy belief that these people are worth fighting for. They believe that with enough work, seemingly impossible things just might come true. And even if they don't, they will continue to try their damdedest to find a solution.
 
As Atticus said, 

"You rarely win...
 
...but sometimes you do."

Tangled Thoughts from a Restless Mind

"Enjoy yourself, it's later than you think."

 
I'm tired of being reminded of the fleeting nature of our time on Earth. 
I'm tired of being aware that this can all end so quickly. 
I'm tired of knowing how important it is to stop and smell the roses, that the frost is coming soon. 
I'm tired of happy moments carrying the pang of realization that this can be gone in the blink of an eye. 

Understanding the importance of living for today is a terribly heavy weight to carry.

"when Time and Life shook hands and said goodbye."

I'm so tired of people in my community dying.

What a Joy

It's my birthday!!! I am very excited to say that I turned 38 today. I wasn't sure if I would see this day, but it is here, and it is great.

I've never been one to be ashamed of growing older, but especially now I see each day as a success. I'm still here! I'm still enjoying happy times with my family, soaking up the tiny bit of sun that is starting to warm up our seemingly-never-ending winter, and even dreaming about planting a garden.

Tomorrow is not promised to anyone. Don't dread growing old; it is a privilege that not everyone gets to enjoy.

What a joy it would be to grow old

To watch my hair turn gray

To see my face crease and wrinkle

With the fingerprint of time.

What a privilege it would be 

To trade my near-sighted specs for those with a line or two

To shout, "eh, sonny?"

And debate the virtues of denture creams.

How wondrous to watch my skin sag

To be called "Over the Hill"

Or "past my prime"

Or Granny.

What a joy it would be to grow old.

May we all celebrate many more days and years on this earth.

If I Only Had a Brain

I went Off to See the Wizard, and believe me, Oz is really something. He answered all my questions and explained things I didn't even know I didn't know. And he insisted we take a closer look at my brain.

So we did. And the results?

I have a brain, and it is unremarkable.

Hooray!!!

Xalkori is an amazing drug, but its Achilles heel is the brain, since it cannot cross the blood-brain barrier. If one single stray cancer cell makes its way up there, the cancer can flourish in a medicine-free environment. Half of the people whose cancer progresses on Xalkori have their first progression in the brain.

My wizard insisted that I have an MRI of the brain, since I have only had head CTs up to this point, which do not reveal the same level of detail. His philosophy is to catch the little buggers when they are tiny to keep ahead of the cancer rather than waiting until they are causing symptoms. Pretty smart, I'd say, but unfortunately not how things are typically done.

Hopefully the team in Oz will help to change the status quo.

What Would You Pay For Your Life?

Medicine is expensive.

Healthcare is expensive.

Research is expensive.

Life is expensive.

Is it worth it?

I read an article (thanks to @BrendonStilesMD for tweeting it) which purports that crizotinib (aka Xalkori, aka my life-saving medicine) is not worth the expense. 

“Crizotinib Not Cost-Effective, Says Canadian Study”

Yes, this is a very expensive medicine (about $10,000/month), and I am grateful to Pfizer's co-pay assistance program which lowered my co-pay from $1,600/month to $10/month. 

Perhaps what bothered me even more than the article were some of the comments, left by doctors:

"It would be justified if this drug really cures the patient and save a life. After all life cannot be measured in dollars. But it does not cure any cancer at all, merely delaying the inevitable end by a few months or (if the patient is very lucky), one or two years. What right have drug firms to charge such a huge price by pretending that a modest palliation is a cure?"

or

"One for the drug companies and a strike out for the patient."

How? I am not allowed to comment on the article itself (it is only open to medical professionals), but I would love to have a conversation with these posters. One big problem is that statistics are good at making predictions for populations, but they cannot determine what will work for an individual. I know many people who have lived one or two years on Xalkori (a few even three years) with a great quality of life. Yes, this is not a cure, but as my lovely doctor in Colorado said, the goal is to stick around for the next big breakthrough. There are other drugs in trials that give me the hope of tacking on another year or more as I wait for new scientific advances.

The other thing that this article forgets it that because I am on Xalkori, I am not on chemo. My medical bills during those months were many times higher (about $30,000/month). Chemo has the added side effect of depressing the immune system, leaving a person vulnerable to dangerous infections and costly hospitalizations. Thus, Xalkori is actually the cheaper path. Am I missing something?

Perhaps what they are really saying is that it is not worth the cost and effort to keep sick people alive. Which, I suppose, we could debate.

Well.


I think it is time to switch gears and take a look at what is possible.

Here is an inspirational, exciting, and funny speech by Dr. Camidge, head of the lung cancer research program at the University of Colorado. My faithful readers may recall that I just flew out to visit with this group. Their program certainly lived up to the hype.

Take a few minutes to watch this. In addition to my obvious personal investment in this sort of thing, I am intrigued by how similar this kind of thinking is to how artists approach their work. Dream big, reach for the impossible, ask "why not?"

Some highlights:

• At 3:30, he talks about being a young scientist starting out. Some of the well-established institutions responded to his new ideas with “we don’t do it like that here.” When he visited the University of Colorado, they responded with, “we don’t know how to do that here … but we’d like to find out.”

• At 4:15 he tells a story that gives me chills, about a drug called PF-02341066. This drug is now known by another name, crizotinib (brand name Xalkori). And it is keeping me alive.

• At 7:55 he describes some out-of-the-box thinking, which his colleagues teased him about and called “pulling a Camidge.” This is now changing how cancer drug resistance is being treated.

He outlines the mantra that drives this cancer revolution.

1. One size does not fit all.
2. Don’t walk away from a good thing.
3. If the cancer moves, follow it.
4. Question everything.

Now THAT's more like it.

Along these lines, I am scheduled for a brain MRI on Friday (thanks to my consult in Colorado pushing to make this happen). Deeply hoping it proves unremarkable.

Off to See the Wizard

Next week I'm headed to the University of Colorado Cancer Center, one of the research hubs for my cancer's ROS1 mutation. Many thanks to the amazing Bonnie J. Addario and her lung cancer foundation who helped to coordinate this for me. Although things are going quite well for me right now on Xalkori, I know this won't last forever. The median time before progression, meaning when the cancer becomes resistant and starts growing again, is eight months (there's that pesky eight months again). While I definitely hope to be on the far right side of the graph, I want to get Plan B in place for when I need it.

I am really excited and nervous to discuss possible options, trials and so forth. I am also nervous about weird stuff, like the fact that I will be flying while carrying my ridiculously expensive and life-saving meds on my person. What if TSA finds some reason to confiscate them? Jason assured me that it would be completely illegal for them to take my prescription meds, but still, it's a little nerve-wracking.

Then, when I get back, Zander will be having surgery to get ear tubes, a tonsillectomy and adenoidectomy. I know it is a very routine procedure and I think it will help him a great deal in the long run, but, I'm a mom, so I worry.It made my stomach drop when Zander referred to his ear appointment at the Cancer Center, and that he will be having surgery at the Cancer Center. I tried to calmly clarify that while the children's hospital is in the same complex, his experience will be very different than when Mommy goes to the Cancer Center. And there will be lots of ice cream.
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I renewed my driver's license today. Whenever I do something like that there is this tiny part of my mind that wonders if this will be that last one I have. I remember signing my 2-year cellphone contract this summer and chuckling darkly to myself about the chance of me actually fulfilling my side of the agreement.
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You know, this may not be the best blog post title, since the wizard in the story turned out to be an overrated fraud. Of course, the heroine of the story also realized that she had the power to save herself all along....

May my yellow brick road lead to safe flights, fruitful meetings, incident-free procedures, and paths to healing.

Pedi-Cure for Lung Cancer

Okay, so nail polish is not the cure for cancer, BUT if you donate $25 to the Bonnie J. Addario Lung Cancer Foundation, they will send you a bottle of purple polish as part of their super cool "Purple Toes" campaign.

What better opportunity to introduce my girls to nail polish (I asked Zander if he would like to join in the fun, but he declined). The girls were intrigued but a little confused and hesitant, so I painted my toes first. I am not a particularly glamorous person, and I realized my kids have never seen me do my nails, or put on makeup, or use hair products, or any of those sorts of things, so this was quite an adventure.

Honestly, I can't recall ever painting my toe nails before. 

Zander helped out with the drying.

Here we go! Painting squirmy two-year-old toes is very challenging.

Autumn was still skeptical about all this.

Eventually, she decided to join in the fun.

30 purple toes for a great cause.

Click here to make your donation and get your purple nail polish.

Remember to take a picture and send it to the Bonnie J. Addario foundation so they can add it to their Purple Toes mural. Join in the fun, and spread the word!

Unremarkable

There are few times in your life when it is nice to be called "unremarkable." At scan time, it is quite nice.

My liver is now "unremarkable." It looks just like any normal liver, meaning no mets. The bone mets are sclerotic, essentially like scabs or scar tissue. My primary tumor in my lung is 16mm, which is slightly smaller than a dime.

Unremarkable feels pretty remarkable to me.