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.


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?"
"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.


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.