Recipe for Living with Metastatic Cancer

Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.

• First, you will need three heaping cups of support.

This support can come in a variety flavors, and many blend well together.

The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.

The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.

The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.

Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.

• Next, throw in two large handfuls of courage.

Sometimes the courage comes in big chunks, enough to sustain you for weeks. Other times, it is granules that are just enough to keep you going one moment at a time.

It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.

• Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.

People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience.

When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.

• Throw in a dash of denial.

Without just a touch of this, the flavors can sour.

Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.

• Finally, cover the whole thing with a generous dusting of hope.

This final ingredient pulls the flavors together and makes it all palatable.

Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.

~~~

Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer

Live in the Moment: A Lesson From Cancer. And Preschoolers.

Having stage 4, incurable, metastatic, terminal lung cancer (or "eventually terminal" as my cancer buddy says) has made me acutely aware of death in a way I never expected to be at age 38.

I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.

I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge?

~~~

People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.

So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.


I'll look back on this when I'm 80 and I'll laugh about it!

This will make a great story to tell my grandkids!


I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.

In five years, our little boy will be 11 and in middle school. Will he still have his heart-achingly gentle outlook on the world? Will he still be the kind soul who once explained to me, the reason Oscar the Grouch is so unhappy is because he lives in a garbage can. How can he sleep? The poor creature is miserable, no wonder he is rude.

In five years the twin girls will be 8. There will be no baby talk left in them. The terrifying sounding "pinado" will become a simple "piano," and the aptly named "hungerburgers" will be plain old "hamburgers."

Those 3-year-olds have the concept of living in the moment down to a marvelous, frustrating science. When prancing around the house like Elsa and Anna, nothing else in the world matters.


"It's time to get dressed and go to preschool."

"But we're dancing!!!"


Really, what matters more than the joy of spinning around in fairy wings and a cape? Being around small children forces you to stay in the present moment. The runny noses and sore tummies are so grounded in reality and immediacy that there is little room left for worry about futures that may or may not be.

~~~

Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?

So I avoid thinking about the future. At least most of the time.

It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?



Originally posted at: www.curetoday.com/community/tori-tomalia/2014/12/live-in-the-moment-a-lesson-from-cancer-and-preschoolers

The "Why Me" of Cancer

Cancer?!?

This can't be happening.

What did I do to deserve this?

Am I being Punked?

Is this my fault?

This isn't real.

Why me?

Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, "Why me?"

Why does a 14 year old vegetarian get bone cancer?

Why does a 37 year old non-smoking mom of three little ones get lung cancer?

Why would both patients be the same person?

~~~

When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist. Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40?

A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma.

My pediatric oncologist confirmed that this does not appear to be a late effect of prior treatment. Survivors of childhood cancers do face a slightly increased risk of subsequent cancers, based on what treatments were used for their first. However, the chemotherapy agents I had increased my odds of getting leukemia (very slightly). Lung cancer is nowhere on the list.

The third question was a bit trickier. She told me that I needed to get tested for Li-Fraumeni Syndrome, a rare genetic condition that makes a person highly prone to developing any number of cancers. The most worrying part about this is that I have three children. If I tested positive, each one of them would have a 50 percent chance of inheriting the syndrome.

How's that for maternal guilt?

Fast forward through CT scans, PET scans, a second bronchoscopy, genetic counseling, and sending DNA samples to be tested for Li-Fraumeni.

The bad news: the lung cancer had spread throughout my bones and into my liver. Metastatic. Stage IV. Incurable.

The good news: I do not have Li-Fraumeni. So, as far as they can tell, the second cancer is not part of a syndrome that my kids could inherit.

Those are some pretty heavy scales. But they tip in favor of the good.

That brings us back to the why.

The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke? While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked (like me), and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.

~~~

Why me? Why did I get cancer?

Well, it must be because you smoked. No?

Well, then it must be caused by previous treatment. No?

Well, then it must be caused by a genetic condition. No?

Well, then it must be caused by lifestyle choices. No?

Well, then it must be caused by second hand smoke. No?

Well, then it must be caused by radon. No?

Well, then it must be caused by pollution. No?

Well, then it must be because you prayed to the wrong god.

Well, then it must be some sort of cosmic joke.

Well, then it must be punishment for mistakes in a past life.

Because it must be YOUR FAULT.


I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.

Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?

Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.

~~~


So, why me?

Why me?

. . .

Why does it matter?

What about you? Have you had a "why me" journey? I welcome you to share your story in the comments.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/the-why-me-of-cancer

Repeat Visitor to Cancerland or The Worst Vacation Destination Ever

One of the things I love about reading blogs is their immediacy. They are typically written in a moment of heightened emotion, in response to a life event. They are raw.

In my new adventure blogging for CURE magazine, I am going back to the beginning of my cancer journey to catch those readers up to where I am now. I am able to reflect on moments that were too intense at the time to fully process. In my first post, I talked about the terrible moment in May of 2013 when I was diagnosed with lung cancer. The overwhelming emotion at that time was shock. I felt frozen and unable to think clearly. Looking back now, I can attempt to explain what it felt like, hopefully reaching out my hand from the shore, helping others navigate that awful fog.

I realized that I couldn't talk about my current adventure with cancer without revisiting the first time, twenty some years ago when I had childhood osteosarcoma. So here is a glimpse at the early days of diagnosis, the first time around.

You Have Cancer. Again.

If that link doesn't work, try this one. You Have Cancer. Again.

You Have Cancer. Again.

The first time I heard that dreaded phrase, I was 14 years old. I had taken up a juggling hobby (make that obsession) and had been practicing for many hours a day. My right shoulder had started to ache, so we all assumed it was from overuse. I tried to back off a little, but the ache continued. One evening, I was juggling clubs at The Juggling Club and I threw a high double and caught it in my right hand. I heard a snap and felt excruciating pain shoot down my arm. I dropped the club I had just caught, and the ones in the air clattered to the ground. The room full of jugglers turned to look. I gritted my teeth, smiled and said, "Oops! Ha ha, I'm just … gonna go get a drink of water," and I rushed out of the room. Once in the hallway, I collapsed against the wall and tried to figure out what had happened. I could barely move my arm and it hurt, oh how it hurt.

~~~

It was already late, so I told my mom I was too tired to go the emergency room, let's wait until morning. It's probably nothing, may as well get a good night's sleep first. A couple of ibuprofen should dull the pain.

~~~

The ER doc thought it was most likely some sort of muscle strain, and that the noise I heard was the joint popping. "Let's take an X-ray, just to be safe."

His face when he returned with the films . . .  the look on his face told me it was not good.

"It's not what we expected."

He put the X-ray up on the board and we saw that a large tumor was filling the head of my humerus. The weight of a single juggling club had caused this weakened bone to snap.

I had heard my bone break.


My mom's face.

The doctor's face.

I picked up a magazine and pretended to read.

~~~

My best friend's dad was the pediatric oncologist available that morning. Now that I'm a mom, I can't imagine having to tell my kid's best friend this terrible news, to look at the parents that I know so well and say that heartbreaking diagnosis. Osteosarcoma. Chemotherapy. Surgery.

"But I'm in a play. I can't have cancer."

"We will do a biopsy to confirm. If it shows cancer, we will put in the portacath while she is still under anesthesia. We will need to start treatment right away."

~~~

As we drove to the biopsy that cold October morning, I looked out the window and thought to myself, "Thus begins the winter of my life."

So dramatic!

~~~

When the first wisps of consciousness lifted me out of anesthesia, I immediately felt for a port along my ribs. It was there. So it was confirmed.


You have cancer.


And now, over 20 years later, I am back in Cancerland. This time it is stage 4 lung cancer. So much is the same, and so much has changed.

The first time I heard those words I was terrified of needles. I was terrified of the hospital. I was terrified of losing my hair. I didn't think about dying, all my fears were focused on the really really really difficult chemo regime it involved.

The second time I heard those words, I was terrified of dying. I was terrified of missing my children growing up. I was terrified that they would never know their mom. I was terrified of not holding my end of the bargain with my husband, we were supposed to grow old together, raise our children together, build our lives together. How could I skip out on all that?

"I can't have cancer. I have three small children."

I made it through then, I can make it through now. Of course, now there isn't a "through." Now there just is. Just this, just now, just treatment and side effects, hoping I don't run out of options. Hoping the meds can keep one step ahead of the disease. Hoping that science keeps pace with my cancer. Hoping all the promising research pans out in time for me to use it.

Now I need to stick around for the next big thing.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/you-have-cancer-again

Blogging for CURE

In an exciting turn of events, I've started blogging for the cancer publication CURE. They publish both a magazine and web content, and I am looking forward to sharing my story with a new audience in the hopes of educating and helping more people who are on a cancer journey. CURE provides Cancer Updates Research & Education to patients, caregivers, and people working in the field of oncology. The magazine has recently brought on several bloggers in an effort to give readers a more personal side of the patient experience. I'm very happy to be one of them.

I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog.

Full disclosure: CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on my post below. And if you enjoy the read, please pass it along to your friends.

The first several posts on CURE will be catching those readers up on my cancer experience so far. My initial post (below) deals with the terror of the first few weeks after diagnosis. I welcome any feedback you have, either here on my blog or on the comments section over at CURE.

Knowledge is Power: A Cancer Patient Navigates Her Diagnosis

Edited - some people were having trouble with that link on certain browsers. If it doesn't show, try it here: 
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis


**Housekeeping note**

Some people have asked how to know when there are updates on this blog. If you are reading on a desktop, look over to the upper right hand side for the "follow by email" box. Just put your email address in there and click submit.

If you are reading on a mobile device, scroll down to the bottom and you will find the "follow by email" box. Put your email in there, click submit, and you are all set.

Best of Lung Cancer Awareness Month 2014

"...be inspired and punch a hole in the wall of numbness and dumbness. And now is the time to do it. It's going to take a very strong person to punch that hole. But that person or persons will lead the way to the next place. One just sits and waits for the rumpus to begin."  - Maurice Sendak

The Lung Cancer Awareness advocates have been busy! While we didn't have sports teams and cheerleaders wearing pearls or white ribbons for us, I think we had better visibility than last year. We are making progress in reaching more people, and equally as important, we are growing stronger as a community. As my friend and fellow lung cancer blogger said so well, "We may be low on funding, but we’re big on community." (If you haven't read it before, click on that link for a wonderful post about the life-altering power of community.)

There were thousands of inspiring and educational videos, blogs, stories, tweets, and articles during the month of November. Since it would take a long time (like, a month) to repeat them all here, I will instead highlight a few of my favorites. So grab some popcorn and settle in to enjoy this Best Of #LCAM14.

Best Infographics

 

• Who doesn't love an acronym?

• I hate to admit it, but I think I was one of them. Are you?

• DustyJoy.org created an entire alphabet of facts about lung cancer.

Post by DustyJoy.org.

• LUNGevity challenged lung cancer patients, caregivers, and advocates to take pictures of themselves wearing a LUNGevity band and holding facts about lung cancer. The goal? To educate and change the face of lung cancer. 

• Damien (aka @CoolioUserName), a fellow lung cancer traveler, created a whole slew of awesome graphics. Here are a few of my favorites.

Best Blog Posts

•  Oren Miller, a young dad with stage IV lung cancer, shares what he has learned from living with this disease. His beautiful post reads like a love letter to his family. "I Am A Dad With Stage 4 Lung Cancer, And Here's What I Know Now"

• Lisa Goldman, young mom and fellow ROS1er wrote this funny, snarky post that asks what we need to do to raise awareness for this disease. "Lungs. They're Right Under Your Boobs! (Celebrating Lung Cancer Awareness Month)"

Bonus - because of the great response to her new slogan, Lisa created some merchandise, and the proceeds from the sales will go to the Bonnie J. Addario Lung Cancer Foundation.

Best Videos

• Terrified by the awful statistics? Need some hope? Then watch the remarkable Linnea Duff, a 10-year (yes, you read that right) survivor of stage IV lung cancer, as she talks about living with lung cancer. "It's Possible to Live WITH Cancer | GRACE :: Lung Cancer"

• Lace up your gloves, folks, the Bonnie J. Addario Lung Cancer Foundation is asking you to join the fight. This video takes us back to the first days of the war on cancer, and looks at where we are today. "Addario Lung Cancer Foundation - Join the Fight!"

• I really hope by now you know more than 99% of the women in this survey. Watch the LungForce video "Women's Lung Health Barometer" to make sure.

• For the past year, Molly Golbon has allowed a camera crew to follow her experiences as a young mom with stage IV lung cancer. I cannot fathom the courage it took for her to let them film her getting scan results. She must be made of steel. I think I speak for the whole lung cancer community when I say a heartfelt thank you to her and her family for opening up their lives to help educate the nation about this disease. Please take the time to watch this amazing documentary. "Molly's Journey: Living with Lung Cancer."

Well, there you have it. What a remarkable month. I am so proud of the lung cancer community. Let's do it even bigger and better next year!

Knowledge is Power: A Cancer Patient Navigates Her Diagnosis

Knowledge is power.

This belief has driven how I respond to stressful situations throughout my life.

When I was pregnant with our first child I took every class I could find, read stacks of books, and watched many hours of birth videos (thanks to my midwife sister).

I focused. I studied. I prepared.

When I found out that our second pregnancy was twins, I read books and asked questions of every twin I knew. As the pregnancy progressed and took a complicated turn, we were told that the girls may be born severely premature and if they survived they would face a lifetime of challenges. In response, I started reading about raising children with special needs. I subscribed to blogs written by some amazing families with special children. I got ready for every possible scenario.

I focused. I studied. I prepared.

When I was diagnosed with metastatic lung cancer, I dove into the research and tried to learn everything I could about this disease.

Actually, that's not quite true.

For the first few weeks I was in a fog of confusion, denial, shock. In those early days I felt completely frozen. It was as though there was an avalanche of emotion waiting to engulf me, and any wrong move could set it off. I couldn't even listen to music, because the feeling of the notes caused the ground around me to vibrate and I knew if it shook too hard the walls would collapse and I would be crushed under the weight of my reality.

For the first few weeks I actively avoided reading anything about lung cancer. I knew enough to understand how dire my situation was. I couldn't face seeing it in black and white.

I had to absorb the news in tiny droplets, taking in a little bit more every day. Drop by drop, I started to accept it. As the weeks went on, I started to face my diagnosis. My coping mechanism for tough situations had always been to seek out knowledge and turn to information for comfort.

I took a deep breath and started reading.

And what I read was scary. The stats were bleak, and they were staring back at me unblinking from the page.

I knew that I had non-small cell lung cancer.

I knew that I was only 37 years old.

I knew that I had three kids under the age of 5.

I knew that I may not be around to see them grow up.

I knew that it had spread from my left lung to my ribs, my spine, my hip, and my liver.

I knew that there was no cure.

I knew that I had a really rough road ahead of me.


I knew that I was ready to take the first step on that path.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/knowledge-is-power-a-cancer-patient-navigates-her-diagnosis

If Not Me, Then Who?

As I hope you know by now, it is Lung Cancer Awareness month, and the members of the LC community have been working our lungs out (see what I did there?) to educate and raise awareness about this horrible disease.

A heartfelt thank you to my friends and family who have put up with me going on (and on and on...) about lung cancer awareness. But it means a lot to me. Obviously.

During this week, this week of thankfulness, 3,000 people in my community will die from this ignored, underfunded, misunderstood, and stigmatized disease. 

3,000 people.

In this week of Thanksgiving I am constantly reminded of just how freakin' lucky I am to still be around today. I can breathe. I can speak. I can write. Too many people in my community are no longer able to do so.

I speak out for myself and on behalf of those who no longer can. I keep talking about it, because so far I am not one of the 3,000.

I keep advocating because I still can. If not me, then who?

As part of the effort to educate and raise awareness, I have been posting images, stories, and facts each day on my Facebook page. If you haven't yet, please join us on the Lil Lytnin' Facebook page.

I also had the opportunity to share my story on a few other platforms. Click through each link to read the articles.

For the first time in my lung cancer advocacy career, I wrote for a non-cancer-related site, Parents Magazine.

| The Parents Perspective

 

I guest blogged at Livestrong.

A Survivor Story: Tori Tomalia

Lung Cancer Awareness Month (#LCAM) got some nice coverage on NBC news and I got to share my story again, this time alongside two awesome women, Emily Bennett Taylor and Arielle Densen.

Lung Cancer for Nonsmokers Still Stained by Stigma - NBC News

By the way, I swear I have submitted other photos to these media outlets, but they always choose this one. I can't blame them, Edda did an amazing job with it!

I also made an online quiz, a fun, interactive way to learn something about lung cancer. 

What do you know about cancer?



So there's a recap of what I have been working on over the past month (I mean, in addition to juggling side effects, raising kids, living life, helping start a business, etc.). Don't think I have forgotten about the outstanding people and groups that have been doing great things for LCAM14. I will have a "Best Of" list in a subsequent post. Stay tuned!

Breathing Easy

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months.

Speaking of breathing, here is one of my favorite lung cancer infographics. 

At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting.

We will be addressing these questions:

• Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
• Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
• Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
• Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
• Q5: How has the lung cancer information you share changed over time?
• Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?

Please join us! It should be a lot of fun. 

Superstition

"Security is mostly a superstition."
- Helen Keller

I like reason and facts. I question everything, and always want to see evidence. I think I am a pretty sensible, level-headed person.


And yet....

I wear the same socks for each CT scan.

I wear my favorite shirt for each appointment where I get scan results.

I wear two "charmed" necklaces every day.

And I have saved every empty bottle of my cancer drug Xalkori.

Saving my first bottle of Xalkori didn't seem so strange, since it was such a momentous occasion when we found my driver mutation and I started taking this magic medicine. And then I kept the second bottle so the first wouldn't feel lonely, and by the time I got the third bottle I couldn't bring myself to throw that one away because the medicine was working so well. So now here we are, a year later, and I have over a dozen bottles cluttering up the shelf. Ridiculous, yes, but that totally irrational part of me thinks that maybe if I get rid of the bottles the medicine will stop working.

Superstitions make sense, really. When it comes down to it, we actually have no control over anything that happens in this life, as much as we like to think we do. The road twists and turns as we travel along, and all we can do is hold on and keep moving forward. Little trinkets and good luck charms give us something to cling to as the winds of chance try to knock us off our feet.

It's scan time again, which has me feeling extra punchy and on edge. On Friday I will drink the oh-so-yummy contrast solution then lay myself at the feet of the imaging gods as the machine takes pictures that determine my fate. On Tuesday, the wizard will reveal my future.

If I have snapped at you or been irritable in the past few days, please excuse me. Scanxiety is a nasty beast. Excuse me while I go curl up with my shelf of empty pill bottles.

Quiz: What Do You Know About Cancer?

It is one of the most feared diseases, but what do you really know?

Happily Ever After

This past weekend I had the pleasure of seeing my baby brother get married. When he and his then-fiancée announced their engagement last August, I secretly feared that I wouldn't be around to see the big day. Thankfully, I made it!

All the wedding stuff got me reflecting on marriage, and being a know-it-all big sister I can't help but give a little unsolicited marriage advice - not that the newlyweds will read this, since they are off honeymooning!

Lounging out before the ceremony

People often sagely say that "marriage takes work" and "marriage is hard." I think they are emphasizing the wrong thing. It's not marriage that is hard; life is hard. 

In the words of my favorite superhero, "The hardest thing in this world is to live in it."

It is hard to face all the random twists and turns that life throws at you. It is hard to be thoughtful and kind. It is hard to remember to say "thank you" for all the little things. It's hard not to take people for granted. It's hard to remember to find the joy in the small moments of life. It is hard to feel all the emotions that come with being human.

At dinner, Jason was talking about an improv rule that I think is also a great reminder for life:

"The scene in your head is rarely the scene you are in."

All the small affronts that become looming problems in our minds can often obscure the life that is happening right in front of our noses. It is easy to read too much into an offhand remark, to assign motivation to a tone of voice. It is easy to read weary body language as frustrated, and a comment born of exhaustion as a personal attack. I have often found that when I get irritated with Jason, it actually has nothing to do with the glass left in the sink, but everything to do with how tired I am.

Being a good person is no small feat. Sometimes life is really hard.

So it only follows that marriage has all the same challenges as life. At the same time, it carries with it joy and partnership, love and friendship. For those lucky enough to find it, marriage becomes another one of the blissful challenges you face during your journey on this planet.

Congratulations, Phillip and Liz! May you have many, many happy years together!

Sharing Our Story

I almost titled this post "Sharing My Story," but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so.

This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer.

~ ~ ~ ~ ~

It started with a cough that wouldn’t go away. But everybody I knew had a cold, so it didn’t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn’t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent me for a chest CT scan to see if there was something else going on. There was. The scan revealed a large mass in my left lung, that had wrapped all around and had caused my lung to partially collapse. A biopsy confirmed that it was lung cancer, and further testing showed that the cancer had spread to the other lung, my spine, my hip, my ribs, my shoulder blade, and my liver. I was unequivocally stage IV, inoperable, at age 37.

At that time, I thought it was impossible for a nonsmoker to get lung cancer. Clearly, I was very wrong.

So I began 4 months of chemotherapy. July, August, September, October, I struggled with side effects and tried to spend as much time with my family as humanly possible, to “make memories” as my social worker advised. I got to see my little girls learn to ride tricycles, and I got to see my son start kindergarten. The amazing thing was that as the summer progressed, my breathing started getting better. I was able to climb upstairs and kiss my son goodnight again. I was able to walk around carrying my little girls. And then the scans confirmed it: the chemo was working, and my cancer was shrinking. But as October rolled around, a question loomed: what next? The cancer was shrinking, but not gone, and a person can only tolerate so much chemo before the toxic side effects become too damaging. We discussed what they call “maintenance” chemo, a lower dose of chemo that they can give for as long as the patient can tolerate it, to try and keep the cancer at bay.

Meanwhile, the shock of having stage IV cancer was starting to wear off, and my thirst for knowledge had kicked back in. I started reading about personalized medicine, where they can test the tumor and figure out what went wrong to cause the cancer, called the cancer “driver.” My oncologist had tested me for two common ones, but my obsessive reading and research revealed that there are several other rare ones that can be tested for. I asked my oncologist for further testing and on October 31 – Halloween – I got the wonderful, game changing news that we had discovered what went wrong to cause my cancer, and that there is a drug to treat it. In November, I started on a brand new drug called Xalkori. I have been taking this medicine – two pills a day – for 11 months, and currently I have no evidence of active cancer anywhere in my body.

But I know the battle isn’t over. My wonder drug is amazing, and I am thankful for the good quality of life I have now. I still have side effects, but they are not as bad as chemo. However, I know that my cancer will eventually become resistant to this treatment, that my cancer will figure out a way around my super drug. If/when that time comes, I will pursue other treatments, plans B, C, D, and so on. I have stage IV cancer, I will always be in treatment.

To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be, if that is possible. And I have connected with a whole lung cancer community full of incredibly strong and wonderful people, who I now consider my “lung cancer family.” Sadly, I have learned that this disease can strike absolutely anybody.

There’s Craig, diagnosed at age 60
Janet, diagnosed at age 55
Mark, age 47
Lisa, age 41
Molly, age 39
Samantha, age 33
Emily, age 28
Burton, age 23
and Corey, age 22

The thing we all have in common is that we were all diagnosed at stage IV. Stage IV. The other thing we all have in common? None of us deserved this.

Here are some sobering facts:

• Lung cancer is the second leading cause of all deaths in the US.
• Lung cancer kills almost 2x as many women as breast cancer and 3x as many men as prostate cancer.
• Lung cancer in never smokers is 6th leading cause of US cancer deaths.

And yet, I chose to remain hopeful. I know that I am one of the lucky ones. Things are changing fast in cancer research. If I would have gotten this a few years earlier, I probably wouldn’t be here today. If I hadn’t pushed to get more testing done on my tumor, I might not be here today. Chalk it up to stubbornness, perseverance, or just dumb luck, I am very thankful to be here talking to you today.

I am alive because of research. There are some really exciting discoveries going on out there and some amazing things coming down the pike. My goal is to stick around long enough to see them.

Save a Breath

Next Saturday I have the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. Peter Kaylor was diagnosed with stage IV lung cancer in October of 2012, at which point the cancer had already spread to his lymph nodes, heart, and brain. He was given 4 weeks to live. Despite this terrible prognosis, he soldiered through chemotherapy and radiation and lived for over 5 month, celebrating the holidays with his family and sharing many memories that they hold dear.

Following his death, the family decided that they wanted to make sure other families didn’t have to go through this kind of pain, and they held a fundraiser walk in his honor. This upcoming Saturday will mark the second annual walk, and the proceeds will go to fund the West Michigan Cancer Center, which has set up a foundation to provide PET and CT scans for people at risk of lung cancer.

The group has planned a lovely day beginning with speakers (including yours truly), then a balloon release (using organic, environmentally safe balloons), followed by a one mile walk throughout beautiful Allegan. Afterward, you can bid at the silent auction, the proceeds of which also go to fund the Cancer Center.

If you are in the Allegan area, please come out and join us.

When: October 4, 2014 at 11 am

Where: Mahan Park, Allegan, MI

You can register online (click “donate”) for $20 in advance, or you can register at the event for $25.
Check out the facebook page for more information.

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.