First things first, this post is dedicated to Dr. Leventakos. You’ll find out why later.
We’ve always talked about this cancer thing like being on a roller coaster. Over the first three years there were times of uncertainty, fear, and sadness, but also screams of joy, celebration, and hope for the future.
So why aren’t we celebrating? Oh, sorry, you’re probably asking “celebrating what??”
Frank had scans on Thursday! This was actually Frank’s 5th scan since starting his new drug 11 months ago – sorry for the radio silence. It’s unbelievable really that time has gotten away from us this quickly. Needless to say, Frank has responded remarkably to the new drug Alectinib. His last two scans were basically all clear. All of the spots in the brain have disappeared and it’s now been 30 months since we’ve had a radiology or pathology report that mentioned anything about cancer in Frank’s chest or abdomen. That’s the type of news that we celebrate, right?!?
Well, yes, of course. We had dinner with a couple friends on Friday and had you been there, we would have gotten credit for celebrating. The next morning Frank flew to Chicago to spend the day at a LUNGevity regional Hope Summit visiting his “peeps” in the lung cancer community. I just spent the weekend doing my thing. Multiple soccer games, soccer practice, and all of my “mama duties” as I like to call them. This may seem boring and you may think we should be celebrating in grand fashion, but this is what we want and have wished for. Normalcy!
The fact is that we’re kind of over it. When I say that, I don’t want to diminish the miraculous success that our team has achieved with Frank. We believe in our heart of hearts that if Frank had been diagnosed in 2004 instead of 2014, his situation three years after diagnosis would be significantly more dire. We would be feverishly fighting this disease and every single scan would be total stress bomb. But we’ve been blessed with a variant of this disease (ALK Positive) that’s given us the luxury of getting over it.
Getting over it doesn’t mean Frank is cured. That doesn’t mean Frank will get to stop taking pills every morning and every night. We will ALWAYS get scans every 3-6 months. I will be stressed, cranky, crazy, and full of anxiety starting about a week before every one. There is always a chance that the drugs will stop working and that will be followed by severe disappointment, uncertainty, and stress. With this cancer, we expect to be in treatment of some kind for EVER.
We can wrap our head around that. It’s a new normal. We’ll do it. We are over it.
It’s really kind of wonderful. To be the beneficiary of the hard work of so many dedicated smart people who didn’t write off lung cancer as “just a smokers disease”, but believed that there was a lot of difference to be made is really surreal. These people worked for years, investigated, used new technology, passed the baton to others, collaborated, brought game-changing drugs to market, and learned the best way to give them to people like Frank. They are working as I write this to solve the puzzle, and Frank is living a normal life 3+ years after a Stage IV diagnosis.
We are thrilled to be over it. We thank THEM for bringing us to this place.
Ah, so at the top we dedicated this to Dr. Leventakos (who I might add is a big one of “THEM” from above). At our last appointment, we got the polite *knock knock* on the door as we were holding our breath, waiting. Dr. Leventakos came in and immediately started into a story about a friend of his who Googled him and found this blog. He had no idea we were blogging, but he DID in fact know that people called him “Eleven Tacos”, so we were relieved that we weren’t the ones who let that one out! Anyway, he read the blog and wanted to know why we stopped writing. We didn’t have a good answer. It doesn’t take long to write these. Most of you like when we share.
I guess we were just over it…but sharing is caring and we want you to know how much we appreciate all of the support and prayers that you send our way. Many heaps of love from our family to yours. We will do our best to keep you current if anything changes, but for the time being, assume no news is good news!
Katijo (and Frank)