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.
.....

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.
.....

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.

 

The Meaning of the Median

Eight months ago today I was lying on the couch eating Trader Joe's fish sticks. Those days, I was so short of breath that sitting at the dinner table and eating was a lot of effort, so I took most of my meals on the couch. The phone rang, and I got the terrible news: the biopsy confirmed that I had cancer.

Eight months.

I am officially at the median survival time predicted by the (most likely outdated) statistics. 

What better day than today to dust off Stephen Jay Gould's great essay, "The Median Isn't the Message," writing that is often circulated among cancer patients, with good reason. He does a great job of explaining why he felt confident that he would outlive his cancer's median survival of eight months (and he did). He reminds himself, and us, that the median tells us 50% of the people with this disease will live longer than that point. The right tail of this graph can stretch out for quite a ways, and based on reports from several lung cancer patients who have lived with this disease for years, it does.

I hope to keep pushing further and further into the right side of the graph.

I have a scan on Friday and I have come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions, and general crabbiness. The logical side of me always grapples with this weird fear because nothing is actually different before and after the scan. The event itself doesn't change anything, only my knowledge changes. And yet, it still freaks me out.

I will get the results on Tuesday. Fingers and toes crossed for a good report.

Coming Out with Cancer

I was at the grocery story the other day and caught sight of an acquaintance I hadn't seen for over a year. I started to walk across the store to say hello, when I froze. I realized that she had no idea about my diagnosis, and I would have to decide whether or not to jump into that minefield when she asked how I have been over the past year.

So instead I walked the other way.

Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong.

Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me.

I am not ashamed of having cancer, and I am happy to talk about it with people, but the initial coming out is wrought with uncertainty. Will I get the "pity face?" Will I get the list of things I should/should not eat/drink/breathe etc.? Will I get the awful silence that follows the exchange, "What stage it is?" "Stage IV." ". . . . . . . . . . " (That really happened. I wanted to say something to make her feel less awkward, but I couldn't think of anything, so I just sat there as she squirmed.)

There must be other people who feel this way, people who have an important part of themselves that is a somewhat touchy subject. Perhaps this is how members of the LGBTQ community feel? Perhaps people who have experienced a life-changing event feel this? There is no external marker to show that something big is going on, but it is there, and it is important.

I'd love to hear from others who have felt this way, if you woud be so generous to share your thoughts. And if I'm way off base, tell me that too!

I used to say that I wanted to live a hundred lives in my lifetime. This upside of this cancer journey is that it is helping me to walk in other people's shoes and see with their eyes.

There is the yin in that yang.

When Truth is Not Absolute

Jason and I adamantly believe in being honest with the kids. No matter how difficult or awkward the question, we always strive to answer in a straight-forward and age appropriate way. This includes all topics, from Santa Claus to where babies come from. (Side note - like most kids of his age, Zander has this fascinating ability to simultaneously believe in something and know that it is imaginary. He knows that Jason and I fill his Christmas stocking, but he also believes that Santa is real.) (Side side note - when I was pregnant with the girls, I prepared an explanation about where babies come from, complete with gardening analogies. Two-year-old Zander was totally disinterested.)

So how do you tackle telling kids their mom has cancer?

Mom, is Casper the Ghost real?

No, he is a character in a story.

We told them that I am sick, with a big sickness that requires some really big medicine. And sometimes that medicine makes me feel really tired and crummy. We told them that it is a sickness that takes a lot of work to get rid of, and that the doctors are doing everything they can to fix it.

This is, essentially, the truth.

Mom, are ghosts real?

No. ...but some people think spirits are real.

Spirits?

I haven't gone into the whole horrible prognosis of this disease with the kids, largely because I don't really accept it as absolute truth myself. There are people who have lived with this disease for many years. Who is to say I'm not going to be one of them? How would learning the meaning of the word "terminal" now help these small beings deal with an enormous grief that may not happen until quite a ways down the road?

Yeah... Some people believe ... that if someone you love very much dies, that person's spirit can come back and visit. You won't be able to see or touch, but you may sense this loved one.

But is that real?

...some people think so....

I do not accept that my future is a foregone conclusion. I cling to hope and all the possibilities that hide in the unknown.

I'm still expecting my deus ex machina in Act V.

100th Post! or Why Do I Blog?

This is my 100th post to this blog! Who would have ever guessed, when I wrote that first entry of my travelogue, that I would end up here.

Why do I write this blog?

My motivation has changed radically with each new chapter. In 2005, a free-spirited young woman set off traveling around the globe and used this space to document her adventures. Upon returning to the United States, she met her perfect match and got married in an idyllic beach wedding. A few years later, the two welcomed their first child into the world. This new mom wanted to capture each amazing moment of her little boy's development and share it with friends and family. Since parenting was such a joy, the couple decided to have another child, and were pleasantly shocked to discover that this new baby was, in fact, twins. The tale took a turn as the pregnancy met with complications that resulted in a month of hospital bed rest followed by a premature delivery of the beautiful baby girls. After a harrowing stay at the NICU, the family was finally reunited under one roof, and the adventures of parenting 3 under 3 began.

And now, as you know, lung cancer.

So, once again, my motivation for writing has changed.

~~~~~

The first few cancer posts were a way to let friends and family know what was going on, and to avoid having to explain details over and over. While this remains a major focus, I now find more reasons to write. For me, reading blogs by people going down this strange path has been vitally important; I hope that I might provide that comfort for others.

~~~~~

To my pleasant surprise, several of my blog posts have resonated with people on the other side of cancer. A friend who is an oncologist working with breast cancer patients asked if she could share my post, "An Exciting Time to Have Cancer" with her patients, as she felt I explained things in a concise, accurate, yet personal way that would mean a lot to them.

~~~~~

My friend, Agi, who is an instructor in the biological engineering department at MIT, shared a few of my blog posts with her lab class to help them understand the human side of what they are studying. She also wanted to give them "the reality check of how insurance companies and pharma businesses intersect with the science."

"[S]cientific discoveries don't translate into swift clinical action," she said, "it takes an educated, persistent, brave, and articulate patient -- especially with very recent findings."

One of her students wrote to me, expressing how much reading my blog has helped to motivate him and make him realize "that some fairly meaningless name I'm studying, like ROS1, can be so life-changing for another person."

He eloquently expressed to me that he is one of the students, working and studying

"late night after late night, training to become the professors, scientists, engineers, and doctors that will one day dream, develop, test and prescribe the weapons that you go to war with every day. All of these professionals push past obstacles day to day in order to sharpen your swords and strengthen your shields, so that when you go to war, you will win."

It inspires me to hear that kind of passion from the upcoming generation of scientists. 

~~~~~

I was honored to have this blog make Healthline's list of the Best Lung Cancer Blogs of 2013. I hope this will help people who are dealing with this disease to find the blog.

~~~~~

In case you may have missed it, I was interviewed for a story in the Ann Arbor News. Journalist Katrease Stafford wrote a great article that covers events in my life both pre- and post-cancer.

~~~~~

And while I am very happy to be making these new connections, there is one other very important reasons why I write.

I write because there are conversations I may never get to have with my kids. One day they may read my words and I hope that will give them comfort. It is a way for them to know me, to understand how I view the world, and what I find important about how we travel through life. I want them to know how much they motivate me to be a stronger person. And I want them to know and understand that I love them more that I could ever explain, and I will love them for all eternity.

Happy New Year to all! May 2014 be filled with laughter, love, and life!

Patience

Cancer is forcing me to learn a whole new kind of patience. Though I am starting to feel fairly decent on my new meds, my stomach is still unpredictable, and I don't have the energy I used to have. In some ways, because I feel close to normal it is all the more frustrating to face my limitations. I can't multi-task as seamlessly as I used to, which I attribute to the powerful medicines that have been bombarding my body for the past 6 months. I find myself getting overwhelmed when I'm trying to follow several things at once, whereas I used to thrive in these situations. Janet of Gray Connections wrote a lovely piece about how this "chemobrain" side effect has helped her to empathize with people who face various challenges. (Janet is also a ROS1+ stage IV lung cancer fighter, and a lovely and brilliant lady.) This experience is forcing me (sometimes dragging me kicking and screaming) to become more patient with myself and accept that things may need to move at a slightly different pace now.

The funny thing is, I've often attributed my impatience to having bone cancer as a teen. I had just started high school, and was wrapped up in trying to figure out that world when BOOM! Cancer. I learned that your whole life can change in an instant. When I finished treatment and had the wonderful gift of living, the notion of how fleeting it all is stuck with me. 

Case in point: 

Jason and I met in November, got engaged in December, got married in April. 

When something is right, don't wait!

I don't mean to say act foolishly, just don't waste time doubting yourself and making excuses.

And if my kids are reading this one day: remember that Dad and I were both 29 and had years of dating experience so we were able to assess the situation well. Be cautious about rushing into a lifelong experience at age 18!

When I was traveling around Australia several years ago, I thought I would try my hand at scuba diving so I signed up for a 3-day / 2-night scuba boat excursion on the Great Barrier Reef. I was recounting this to my sister a few months ago and she commented that I had never scuba dived before, so how did I know I would like it? I didn't really know how to respond. It hadn't occurred to me that I might not like it, and even if I had not enjoyed diving, I'm sure I would have found something else to do on the boat which would have been fun. 

When an exciting opportunity presents itself, say yes. 

I think this philosophy has been a big part of what drives me. As a result of this, I have led a pretty great life. 

But I'm scared

That's okay, I'm scared too.

I've been called fearless, but they're wrong.

I'm, sometimes, beyond terrified.

But sometimes, beyond terrified

Is where you need to be.

So now I am trying to balance impatience with patience, and gain everything I can from both. I guess this is my gift from cancer. ...kinda wish I could have learned an easier way!

I am looking forward to a lovely holiday season with my family, and hope to have many more. Thank you to everyone sending their love and support. It means so much to me!

My wishes for you....
Enjoy the moment.

Play.

Love.

Laugh.

Make mistakes.

Be bold.

Say yes.

Live.

And never pass up the opportunity to pee.*

Happy holidays!

*My old friend Dan gave me this piece of advice many years ago, and I have found it to be surprisingly useful in day-to-day life. You kinda have to pee, but think you will just wait to get home - just take Dan's advice and go now. Your bladder will thank you. 

Xalkori - What a Joy, What a Pain

The past few weeks have been pretty challenging. The side effects from my new superdrug, Xalkori, hit me hard. Hats off to fellow stage IV fighter and Xalkori user Kim (you can read all about her at aquariusvscancer.com), who warned me that I should give myself a good month to settle into the side effect routine with this drug. Boy, was she right.

I've had a crazy number of side effects: nausea, vomiting, reflux, taste changes, constipation, diarrhea, stomach cramps, dry eyes, blurry vision, achy knees and hips, fatigue, and strange strobe-like visual effects.

That last one is pretty fascinating. When I have been in a dark room for a while (such as watching a movie) then move into the light, for a few minutes I get tracers around moving objects, sort of like those stroboscopic photos I remember seeing in Boston. I went to the eye doctor to check out my intermittent blurry vision and he determined it was because of how dry my eyes are ("they look like stucco"). While a variety of eye drops can help with that side effect, he said he was not sure that he could do anything about the strobe-effects. "Oh, that's fine," I said, "I kinda like those."

The taste changes are mostly just annoying. At first I thought I had burned my tongue, because everything seemed to lack flavor. At the same time, things took on this strange, overly-sweet artificial-flavor, like eating sweet plastic. The only things that I still enjoyed were salty and bitter things. Not a big deal, but a bit disheartening when I was already struggling to eat.

The stomach stuff has been the real challenge. Weeks 1 and 2 were really rough, when I felt nauseated pretty much all the time. I would also get these terrible stomach cramps, followed by (excuse my bluntness) horrible gas. In a house with two kids in diapers, we are not subtle when we smell something foul. There were several funny moments when I was curled up clutching my stomach, and Jason started checking the girls' diapers. "Okay, who needs a bum change." When no dirty diapers were found, Zander kept looking around the room shaking his head, "Why do I keep smelling something stinky?!?" Then Mikaela came over to me and said, "Mommy, you have a poopy diaper!" Oh, the comedy.

However, things were gradually improving with the nausea when I had a few bizarre episodes. My heart started racing, I had trouble catching my breath, and I got dizzy. About 20 minutes later I felt completely fine. I contacted my doctor to let her know what was going on. She told me to stop taking the Xalkori and come in to see her. When I got to the clinic, I started having another one of the spells, so they sent me to the ER. From there, they said that they needed to admit me to the hospital so that they could keep me on a heart monitor, since Xalkori can have rare cardiac effects.

Of course, all of this happened while Jason was preparing for finals. Really, the best frame of mind for writing your final papers is to get a message from you wife saying that her doctor sent her to the ER and now they are admitting her to the hospital. Ugh. I don't know how he does it.

They ran a gazillion tests on me and the good news is that the could not find anything wrong. My heart looks great, blood work is just fine, the chest CT showed everything was stable with possibly a little more shrinkage (encouraging since I have only been on the Xalkori a few weeks). They think it was probably a combination of dehydration which led to the dizziness and triggered a panic attack. They sent me home with a clean bill of health and a prescription for Xanax should it happen again.

Since then, things have been pretty good, though I still struggle with nausea in the mornings. The trouble is I have never been a breakfast eater (my stomach always feels a little off when I wake up). Now that I need to take these pills twice a day, I need to make myself eat something for breakfast since taking it on an empty stomach is WAY worse. I am finding my way through that, and usually feel decent by midday. I realized that all of the crumminess I feel now is a side effect of the meds, not from the cancer. It is a fine point, but an important one. It feels more positive in some way, and feels like the balance is tipped in my favor.

The strangest thing for me now is that my doctor doesn't need to see me again until after my scan at the end of January. How weird is that? She said as long as I continue to feel okay, I am considered stable so it is just a matter of managing side effects and chugging along.

I am thrilled to give my veins a rest, and I will happily take these side effects since Xalkori gives me another shot at controlling this disease. I am going to try acupuncture since I've heard it can work wonders with digestive issues. I hope I can be one of the lucky ones who can stay on this drug for two or more years.

In other news, this blog got nominated for the "Best of Health Blogs 2013" contest. If you feel so inclined, you can click on the link below to vote. I doubt it will win (the current top-ranking blog has close to 3,000 votes) but it would be cool to break the top 10.

Healthline

The Key to Happiness

My friend and fellow stage IV lung cancer fighter Jessica Rice has had a very rough road throughout her treatment. She is two years into this journey and has been through numerous chemo cocktails, Xalkori, a clinical trial, CyberKnife, and whole brain radiation.

When I found out I had lung cancer, I was desperate to find other young people dealing with this terrible disease. When I came across her blog, I read it from start to finish. I look up to her as a sort of expert who has already tread the path that I am on, someone who can be a beacon in these unknown waters.

I was looking through her "Frog List" (things to do before she croaks) and I noticed that one of her dreams is to see a Cirque show. Suddenly, I had an idea for how I could try to pay back some of what she has offered me.

I contacted the three people I know who have worked with Cirque du Soleil and, being the lovely people that they are, they all replied promptly with thoughts on how to help my friend. Much scheming ensued, and we were able to contact the Artistic Director of La Nouba (the resident show in Orlando's Disney World) who not only granted two free tickets, but also coordinated for Jessica and her fiance to meet some of the cast members.

How cool is that?

The funny thing is how happy this has made me. Being able to help out someone else feels amazing. I have been the beneficiary of so much support since my diagnosis, it feels nice to help someone else.

I saw La Nouba many years ago, and it is a great show. Over a decade later, this scene still brings a huge grin to my face.

Source: Orlando Sentinel

Take a moment and look over her Frog List. Perhaps there is something on there that you can help with. If not, do yourself a favor and help out someone else today. You just might end up feeling great in the process.

World Prematurity Day

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011.

I had been in the hospital on bed rest since 28 weeks because of placenta previa. I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes.

Man, I just can't do anything the easy way, can I?

The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think back on what my little girls went through when they were too small to understand what was going on. If they endured it, who am I to complain?

Thank you, Mikaela and Autumn, for teaching me how to fight, how to thrive, and how to beat the odds. You are growing into such fabulous little people who keep me laughing and bursting with love everyday. I am so lucky to be your mom.

PS - I really didn't want to talk about cancer stuff in this post, but I would be remiss if I did not mention that I got my scan results and they were stable. No more shrinkage detected, but no growth either. As I explained in An Exciting Time to Have Cancer, stable is one of the good results of a scan. And if you had forgotten that I was waiting for scan results, then just forget about this PS and go back to admiring my wonderful little girls.

Stage IV is No Time to be Timid

I've been rather giddy about my ROS1 mutation news. When I met with my oncologist on Tuesday, she told me that I am the first person at the University of Michigan Cancer Center EVER to test positive for ROS1. She said the technician ran out into the hall screaming when he got the results. The tumor board couldn't stop talking about it. "We finally got a ROS1!"

How cool, I'm Patient #1.

My oncologist wrote my prescription for Xalkori (the brand name for crizotinib), then paused as she handed it to me:

We may run into some problems, because this is considered off-label for ROS1.

Urg, I didn't even think of that. Because the ROS1 group is so small (only about 30 cases), there have been no clinical trials specifically for us. We have tagged along with the ALK mutation trials because, thankfully, the mutations are similar enough that their targeted drugs also work for us. But technically, there are no drugs approved specifically for ROS1. My oncologist assured me that if insurance turns me down, we can appeal directly to Pfizer to get compassionate use of their drug. But all of this will take time.

I asked if I should wait to start the meds until after my scheduled scan on Friday.

Oh, this won't be through insurance by Friday.

Sure enough, when I took the prescription to the Cancer Center pharmacy, they tried to run it and it was declined by my insurance. They will need to get a "prior authorization." This will take several days.

Sigh.

I spend Wednesday hoping to get a phone call from the pharmacy. No luck. So, I go to Pfizer's website and fill out the forms to request the drugs, but notice that the processing time is two weeks. Urg.

I contact the wonderful Bonnie of the Bonnie J. Addario Lung Cancer Foundation. She replies within minutes, and starts working on my behalf. She contacts Dr. Camidge, one of the leading ROS1 researchers, and he advises her what documentation I will need in order to dispute my insurance. (Here is a nice short video of Dr. Camidge discussing ROS1, crizotinib, and the FDA challenges.)

Thursday rolls around, still no word from the pharmacy. I start to get nervous. I would normally be starting chemo on Tuesday, and if we end up needing to go to Pfizer and then wait two weeks for a response . . . this could drag on for ages without me getting any treatment.

So I tweet my frustration.

Tori Tomalia ‏@lil_lytnin
Fighting @BCBSM to get my meds. #ROS1 #xalkori #LCAM2013 #lcsm

Moments later, this appears in my feed:

BCBSM ‏@BCBSM
@lil_lytnin Please email the 800# on the back of your card & contact info to membersupport@bcbsm.com for help getting answers. Thanks. ^GD

Wow, they follow twitter? Incidentally, does anyone know what "^GD" means?

I consider contacting member support, though doubt that they will be able to help me. I decide to first call the Cancer Center pharmacy to see if any progress has been made on my claim. Nope, insurance is refusing it, needs a "prior authorization." The pharmacist said they will work on it and let me know as soon as they know more.

How frustrating that my potentially life-altering medication is being held back by a mess of red tape.

I try to put the girls down for a nap (mostly a failure), I attempt to get some work done (semi-successful), I eat some lunch (success!), and then the phone rings.

It is BCBS of Michigan. They have expedited my claim and approved me for a 6 month supply of Xalkori. They tell me to call my pharmacy and have them re-run the prescription. It will go through now.

!!!!!!!!!!

I call the pharmacist and tell him this.

(Stunned silence) Your insurance called YOU?!? This happens in maybe ... 1 out of 20 cases.

He re-runs the prescription. It goes through. The meds are ready for me.

I tweet a "thank you" about BCBS expediting my claim.

Then I start to feel bad. Had I strong-armed the insurance company by tweeting about them? Had I been inappropriate in airing my frustrations publicly? Should I have just quietly waited and accepted whatever response they gave? Suddenly, the words of a fellow lung cancer warrior ring in my ears: "Stage IV is no time to be timid."

It's true, I am literally fighting for my life.

Tomorrow morning I have a CT scan to see the impact of rounds five and six of chemo (results on Tuesday). I would love to see more shrinkage, and hope for at least stability. I plan to ask for a vanilla/mocha blend for the contrast solution (see my post "Fear" for that story).

Tomorrow night I will start my new adventure with Xalkori. I hope I am one of the lucky ones who show a great response. I plan to stock up on ginger ale and Imodium for what I've heard can be a rough start with this medicine.

I will gladly accept all thoughts, prayers, well-wishes, chanting, etc as I head down this new path. Thank you, as always, for the amazing love and support you have been sending from all over the world. 

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 lots of books, and watched many hours of birth videos (thanks to my midwife sister). I learned and got ready.

When I found out we were having 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 would likely 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 prepared.

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

Actually, that is not quite true. For the first few weeks I actively avoided reading anything about it. I knew enough to understand how dire it was. I couldn't face seeing it in black and white.

Eventually, I took a deep breath and started reading.

Terminal.

Eight month median survival.

Gulp. Well, now I know. Now I will learn all that I can.

So, THEN I started wading through journal articles that were way over my head, desperately trying to understand this thing that was taking over my body.

One very interesting area of research is the driver mutations for adenocarcinoma. By analyzing a sample of the tumor, the doctors can sometimes determine what is causing the cancer to grow. This has been a game changer in the world of NSCLC. Rather that using chemotherapy, which as Jason said is like a shock-and-awe campaign on the body, there are now a handful of drugs that are specifically designed to target a few driving mutations.

Early on in my treatment, my oncologist tested my tumor sample for two common driver mutations with targeted drugs, EGFR and ALK. Sadly, I did not test positive for either. Over the next few weeks, as I gradually started to understand a bit more about this cancer, I learned that there are actually over a dozen known mutations, each that seem to correlate to certain population characteristics (smoking status, age, race). I went to my next appointment with my long list of possibilities and said that I wanted to be tested for all of them. Unfortunately, the sample that they had taken during my biopsy was too small to send off for this full battery of tests. Since the chemo was working, it made more sense to continue on and wait until my cancer started growing again to biopsy more tissue and test for mutations.

But something kept nagging at the back of my mind.

Fast forward to my sixth cycle of chemo. My oncologist was out of town, so I had a short visit with the nurse where she mentioned that I would be starting maintenance with avastin, or alimta, or alimta and avastin. I left feeling a bit unsettled and dove into researching maintenance therapy.

And that nagging feeling came back.

Then it dawned on me: there wasn't enough tissue left to test for a dozen mutations, but I bet there was enough to test for one.

I emailed my oncologist and asked if we could test the sample for the ROS1 mutation. I had a hunch.

I bet you can guess where this is going.

Yes, the test came back and revealed that we have found what is driving my cancer. And even better, there is already an FDA approved drug to treat it, crizotinib, plus several others possibilities currently in clinical trials. 

This chart shows the breakdown of mutations in NSCLC. See that tiny little pink sliver at 1%? That's my tumor's mutation!

Source: Targeting Tumors Early: Trials Push Novel Agents to Forefront

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

Targeting Tumors Early: Trials Push Novel Agents to Forefront

- See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.IHaQjWge.dpuf

This is pretty exciting news, as it opens up a whole new treatment path. I will be meeting with my oncologist on Tuesday to discuss starting crizotinib. I have heard that this drug comes with its own set of challenging side effects, and it can take weeks to months for your body to adjust to it. Most people say that once you settle in, it becomes more tolerable than chemo. Plus, it is administered in pill form, so I will get a break from IVs for a while!

Most importantly, though, it means I have more options. I know that I will be dealing with cancer for the rest of my life, so the more tools I have to work with, the better. I keep reminding myself to temper my excitement, that there is always the chance that I will be in the minority for whom the targeted drug does not work, and cancer can eventually mutate again in response to treatment. For now, though, I am going to revel in my mutation.

Targeting Tumors Early: Trials Push Novel Agents to Forefront - See more at: http://www.onclive.com/publications/oncology-live/2013/january-2013/targeting-tumors-early-trials-push-novel-agents-to-forefront/2#sthash.KPAklSr7.dpuf

Farewell Carboplatin, Thanks for the Dead Cancer Cells and Painful Hands and Feet

Since this is my last cycle with my first-line chemo triplet (carboplatin/alimta/avastin), I thought I would give a little more detail about the experience. Check me out, I'm getting nostalgic.

Day 0 (day before infusion): I start the pre-med steroids, and the effects kick in by evening. I feel amped up and my joints start arching, particularly my hips. Plus I get this weird insatiable hunger, with pronounced cravings for meat. I am unable to fall asleep until after 4 am.

Day 1 (infusion): I start with a blood draw to check that my blood work is good enough for the next onslaught of drugs. This goes off without a hitch, in and out with little delay.

Next stop is the oncology department. My oncologist is out of town, so I have a quick check in with the nurse. My blood counts look good so we go ahead with the treatment as planned, and schedule my next CT scan for November 8. I am leaving oncology at 9:15 am and head over to the Infusion Center for my 10 am appointment.

At 12:45 pm (after over 3 hours in the waiting room), they call me in for my infusion. The room is a large U shape with recliners and IV pumps set up around the perimeter, and a nurses' station in the center. I settle into my comfy recliner and ask for warm blankets to wrap up my arms. This helps to make the veins pop out more and hopefully make the IV access easier. Jason pulls up a not-as-comfy chair and goes to get us something to eat from the snack room. The steroid hunger is kicking in big time.

It takes two nurses and three needle sticks, but they finally get an IV going. No shots today, so that is the last poke for me. They start the anti-nausea pre-meds, and by 1:30 they finally get the chemo started. Jason and I get out the iPad and headphones and start watching "Orange is the New Black."

There is some drama when we hear a nurse from the other side of the room call out, "Guys!" Her voice has that blend of urgency and forced calm that speaks volumes. All the nurses run over and we hear an assortment of rapid-fire orders about Benadryl, call a code, history of asthma, allergic reaction. A tense quiet falls over us as all the patients freeze, hoping for the best and knowing that this could be any of us. Several minutes later the situation appears to be under control and everyone goes back to their business.

My final drug infusion wraps up around 3 pm and we head out. I feel okay, just very worn out. And STARVING. I stop at Panera and pick up a sandwich that I take home and proceed to devour. I spend the rest of the evening going back and forth between my bed and couch, plus enjoying a lovely Korean dinner thoughtfully brought over by a friend.

Day 2: I feel generally run down, but not terrible. Tired, vaguely yucky. Thankfully, Aloxi (the anti-nausea drug) works really well for me. I have a couple of nice bruises on my arm from the IV attempts, and some soreness at the infusion site. The tingling and sensitivity is starting in my hands and feet, a neurotoxic side effect of carboplatin. I spend most of the day on the couch or in bed, "lounging out" as Zander would say. There are also the other GI side effects, but in the effort of avoiding TMI, I will just say that Miralax is great, as are those flushable wipes made for potty-training toddlers. And Activia is really helpful. Who knew?

Day 3: Still tired and run down, increasing tingling and sensitivity in my hands and feet. It becomes uncomfortable to open jars and use hot water. The funny mouth taste is starting, a bizarre and rather gross side effect. It tastes like I have some strange after taste from something sour or slightly off. The only things that seem to help are sucking on hard candies or nibbling on snacks. More lounging out.

 

"Resting" on the couch with my girls

Day 4: My mouth tastes gross. Just gross, gross, gross. It makes me want to sip on something all day - which is a good thing overall, I just wish I could get rid of this weird taste. Salty snacks seem to help. The tingling in my hands and feet is pretty constant today. I feel worn out still, but managed to have a short outing for a hair cut. I have a chronic runny nose and itchy eyes, a side effect from the Alimta. Not terrible, it just feels like I have allergies all the time and I go through a LOT of kleenex.

Day 5: I keep thinking I have more energy, but little things tire me out very fast. I feel sort of foggy-minded, I guess it is a mix of the fatigue and "chemobrain," or the impact of having lots of harsh chemicals coursing through my system. I find that it manifests in that I have a harder time multitasking. If the kids are talking to me and the TV is on and the water is running for the dishes, I have a really hard time following all of the sounds. I have to turn off the faucet and look right at the person talking in order to really follow what they are saying. A very strange feeling when I am used to doing a million things at once. I do manage to do some studying and take the online quiz for my Statistics class (I aced the exam! Woo-hoo!). I just need to focus a lot harder than I am used to.

Day 6: Things are improving. The sensitivity in my hands and feet is decreasing, making washing dishes way less painful. I managed to do a bit of vacuuming, did a quick grocery shop, and carved pumpkins with the kids. Still tired, but things are looking up.

Day 7: I am a marathon sleeper (really, if there were a contest I could totally win), but I am starting to feel more like myself. My feet are still a little sensitive, but cozy slippers and socks make them much more comfortable. Time to get back on my exercise routine!

So, there you have it, a glimpse at chemo week. I am very thankful that I am one of the luck ones who is still able to function somewhat normally while on chemo. Now comes the "nadir week," where I feel more and more okay, but my immune system takes a nose dive. Lots of hand washing and Purell!

Making Small Talk When Your Life is Upside-Down

It is day 4 after chemo (cycle 6), so I am pretty wiped out. My exciting outing for the day was a quick haircut at Great Clips, since we are going to have some family photos taken on Tuesday and I thought I should try to look decent. We have been meaning to get photos done since the girls were born (yes, over 2-1/2 years ago) and we are finally doing it.

I hadn't realized how complicated small talk with strangers can become when tackling a major health issue. My friendly stylist chatted away, as they always do, asking me what I was up to today.

WHAT I THOUGHT: Sleeping, recovering from chemo, trying to eat a lot of calories and keep my fluid intake up.

WHAT I SAID: Oh, I have had a pretty relaxed day. Just taking it easy.

Somehow the conversation came around to what I do, which is a weird topic of conversation for me now, because I am still in grad school, but only taking 1 class, and I am only working very part time. She asked what I was studying, I replied Theater for the Young, and of course she asked what sort of work I would do with that.

WHAT I THOUGHT: I used to know. I wanted to be a professor. I was going to develop arts integration curriculum, and write and direct shows for young people. But who knows now what I am going to do. My priorities have all shifted. The most important thing now is spending time with my family. 

WHAT I SAID: Oh, teaching, working with kids in the arts. Freelance stuff.

As we discussed my haircut, she mentioned that I was last there in March for a trim of my shoulder-length hair (I didn't realize they kept track of that stuff). I explained that I chopped my hair short this summer, and she asked what prompted the drastic move.

WHAT I THOUGHT & WHAT I SAID: Well, actually, I'm on chemo. I cut my hair short because I was expecting it to fall out. It has thinned a lot, but I still have a lot left.

I felt bad, this seemed like a lot to dump on my friendly stylist who just wanted to have a pleasant chat. But she took it in stride and we wrapped up the haircut.

It made me realize how differently I view things now. Life changes when you no longer assume you have an endless string of tomorrows. It's not that I mind talking about all this cancer stuff, it just seems to shake people up a lot and then I feel bad that I have upset them. No one likes my answer when I say the prognosis isn't good. I remain perpetually optimistic, but my situation has radically impacted my thinking. Sometimes I feel like I am in some alternate reality, where future plans are forever unstable and all that really matters is this present time.

And then, I think, this may be how life really works.

Health Kick, or Is It Possible to Get Healthier on Chemo?

On Tuesday I am due to have cycle #6 of this chemo cocktail (carboplatin, avastin, alimta), the second of my "bonus rounds." For some reason, cycle #5 has been incredibly kind to me. Sure, I had lots of the annoying side effects, (a weird taste in my mouth, tingling hands and feet that become incredibly sensitive, plus I got a stye in my eye) but those left after about a week. The fatigue is always rough, but this past week I have felt my energy returning to levels much higher than before I started chemo. The main thing is that I can breathe so much more clearly. 

After I was diagnosed, I remember looking around our backyard, and I noticed that I had placed a lawn chair next to every one of the kids' play areas. I was so short of breath that I could not stand for any length of time to play with them. I didn't go up to Zander's room because I would be so very winded by the time I reached the top of the stairs. In those days, having a shower and walking back to our room was enough to require at least half an hour of bed rest to recover. 

Somewhere over the past few months, that has all started to change. I can now walk around carrying my daughters (one at a time, mind you!). I discovered this quite by accident when Mikaela was fussing and I picked her up purely on instinct and started walking. After a minute or two, I realized that I wasn't puffing for air. That was a wonderful moment. 

My new found ability to breathe has put me on something of a health kick. About 2 weeks ago, we bought this lovely new toy.

Mikaela working out

I decided that, since my lungs actually seem to be working again, I have an obligation to keep them as healthy as possible. I appreciate the ability to breathe so much more than I ever have before.

At first, I struggled to do more than a few minutes on the bike. However, after 2 weeks of dedicated practice, I can go 20 minutes nonstop. It's not so impressive - I have to keep it on the lowest setting, but remembering that it was only a few months ago that I could not climb a flight of stairs, I feel pretty excited.

I have also been drinking protein shakes to help keep me at a 2000+ calorie a day diet. Weight loss is a major problem for cancer patients, both because the cancer steals nutrients, and from chemo related nausea. Thankfully, the anti-nausea meds have been very effective for me, so I have been working to pack on the pounds. I am pleased to say that I have gained back all of the weight I lost, and then some!

Hopefully, Cycle #6 will be relatively tolerable, and I will be able to continue (slowly) improving my fitness level. It's not much, but it makes me feel good to be able to do something to keep myself in good condition. I hope to be in this fight for a very long time.