Sunday, April 06, 2014

The Other C Word

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


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

I've often been told how brave I am in this cancer journey (and in my first). That has never made much sense to me, as I'm not doing any of this by choice. I would much rather NOT have cancer, and NOT put my family through all of this. Sure, great life lessons, live in the moment, blah blah blah, but I would really prefer not to have cancer at all. Really. REALLY. Really really for real.
 

I am, however, surrounded by some very courageous people. Perhaps the most astounding and least acknowledged are the caregivers, the partners, the spouses. They voluntarily attend countless appointments, put up with scanxiety, hold the patient's hand while awaiting daunting test results, and take care of rambunctious munchkins when the patient needs to sleep. (That last one might be specific to me.) None of this is required; it is not their bodies that are resentful hosts to this beast, yet they do it willingly. That is courage.
 

The other group who knowingly walk into this fray are the doctors and scientists. Sadly, I need to qualify this since I have come across too many that have the - usually unspoken, but not always - belief that people with stage IV cancer are not really worth the trouble and should be sent home to die. Thankfully, there exist some doctors and researchers that dare to dream. I'm talking about the handful who choose not to give up on us, even when the odds of living a long life with metastatic cancer are, well, pretty close to nonexistent. These are the rockstar docs (I've become a bit of a fan girl for some of them). They face hopeless situations with the crazy belief that these people are worth fighting for. They believe that with enough work, seemingly impossible things just might come true. And even if they don't, they will continue to try their damdedest to find a solution.
 
As Atticus said, 
"You rarely win...
 

...but sometimes you do."

Sunday, March 30, 2014

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.



Wednesday, March 19, 2014

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.

Monday, March 17, 2014

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.

Tuesday, March 11, 2014

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. 




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.



Friday, February 21, 2014

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.

Sunday, February 09, 2014

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.


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!