Monday, May 29, 2017


Four years ago today I was diagnosed with lung cancer. We wouldn't find our for several days just how bad it was. This time four years ago I was still under the false impression that the cancer was contained in my left lung, that I would be facing chemo and the removal of my lung. That we would be aiming for a cure.

We wouldn't know for several days that it had spread to the other lung, to my spine, my hip, my shoulder blade, my ribs, and my liver. We didn't know yet that the cancer was incurable. We hadn't yet thought of the word "terminal."

The statistics for Stage IV lung cancer are sobering. According to the American Cancer Society, the 5 year survival rate for metastatic lung cancer is 1%. The Lung Cancer Association cites more optimistic figures at 4%.

We had a big, heartbreaking loss in the lung cancer community yesterday. The red headed unicorn, the force of nature, the woman who inspired so many of us, Kim Ringen died yesterday, just a few days short of her 4 year cancerversary. It's hard to celebrate mine when I know she and so many others will not.

So today I'm trying to turn the sadness into thankfulness. We spent the weekend putting in our backyard vegetable garden, and with each turn of the soil I thought about how lucky I am to be able to dig in the dirt, to plant and nurture new life. I try to accept that I need to pace myself, even though my physical limitations frustrate me (as Zander put it, "Mama, you take A LOT of breaks).

Kiddos hard at work

The Garden
I remind myself how much sicker I was four years ago at this time, when I would gasp for air after taking more than a few steps, when I was too weak to stand in the shower, when even a conversation would leave me short of breath.

I remember all this, I think of all the friends who I have lost, and I remember how very lucky I am to be here four years later.

Tuesday, February 28, 2017

The Best Bad News

I'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news.

The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.

I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.

In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)

In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)

In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.

I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.

Then how did each scan show no growth, you wonder?

MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.

We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.

So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.

I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!

Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.