Sunday, May 18, 2014

That Time of Year

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

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

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

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

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

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

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

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

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

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

Tuesday, May 06, 2014

Xalkori, a Love Affair

Scan results today, and the verdict is...

...drumroll, please...

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

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

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

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

Thursday, May 01, 2014

What Are The Odds

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

I couldn't help but chuckle.

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

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

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

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

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

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

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

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

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

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