Wednesday, August 20, 2014

Changing my name to NED

As I lay in bed this morning, my semi-conscious mind tried to decide if I was ready to face today, a day which entailed finding out if my cancer was, in fact, starting to invade my kidneys as was suspected from my last CT scan. As usual, Jason was already up and taking care of the kids because, well, because he is awesome and because my sleep needs are now much greater than they used to be. I heard him bound up the stairs and say into the phone, "Let me check if she is awake." I was, and I was greeted by the cheery voice of my wonderful PA. "It's good news!" Not only are my kidneys clear, but all the bits of tumor that are left in my lung are dead. There is no evidence of cancer living in my body. I have achieved the holy grail of stage IV cancer, NED (no evidence of disease).


And it is Jason's birthday! He is quite the good luck charm. One year ago today I got the results of my first scan after starting chemo, the scan which would tell us whether or not my cancer would respond to treatment. Needless to say, a very important and very terrifying moment. 

Two years in a row of great scan results on your birthday, Jason! I got to double celebrate with this awesome crew today.

If you are not an inhabitant of Cancerville, you may be wondering why my CT scan from last week would show something different than the PET from yesterday. It helps me to think of the CT scan as a high-definition camera that takes black-and-white photographs of the inside of the body. It can detect every lump and bump, but it can only show what it looks like, and can't tell the difference between a live or dead tumor, scar tissue, cysts, etc. A PET scan involves injecting the patient with a radioactive sugar substance. It goes through the bloodstream for about an hour and every part of the body that eats up sugar will glow when the patient is in the scan machine. Cancer gobbles up sugar, as do muscles, which is why you are not supposed to engage in much physical activity for a day or two prior to a PET scan.

A fellow cancer patient told me that he was advised not to text while in the prep area for his PET scan. I thought about this briefly while the stuff was going through my veins, but I though just a little bit of time on my phone wouldn't be a big deal. Yes, there was a "no phones" sign, but I thought that probably just referred to talking on your phone. And technically I only replied to one text, the rest of the time I was just scrolling and reading. Fast forward to the end of my scan, when the technician slid me out of the scanner machine and said, "Were you using your phone in the prep?" Uh, yes. "Are you left-handed or right-handed?" Left. With a curt nod she turned and walked out of the room. A few minutes later she returned and said, "I just talked with the doctor. The muscles in your left forearm are lighting up, but he said that is just from scrolling on your phone. You REALLY aren't supposed to use your phone in there!" Busted.

This was my view as I drove off to my PET scan yesterday. 
Such a lovely bunch of well-wishers!

For clarification, these wonderful results don't really change anything. I still have to take my amazing targeted med twice a day (THANK YOU XALKORI!), and I still have to deal with the less-than-awesome side effects of the drug, and I still have to go back for scans every three months, and I still know that at some point the cancer will likely develop a resistance to the meds. Unlike many other cancers, such as breast and prostate, there are no markers that you can track from a blood test. I can't see if my numbers are going up or down as an indication of the state of my cancer. With lung cancer, the only reliable way of knowing (currently) is to wait until it is big enough to grow into a tumor visible on a scan. So, it is quite possible (maybe even probable) that there is some cancer left if there. But, for now, it is just fantastic to know that there is no visible cancer in my body.

And for the punch-in-the-gut portion of this post:
I asked Zander what he wished for when he blew out his birthday candles. 
"I wished that you and Daddy would never be dead." 
A strange kind of boogeyman enters your world when you become a cancer family. I've learned that the thing of nightmares can come from within my own body. We all face the same impermanence and chaos of the world, but a journey like this forces you to come face-to-face with mortality in a way that many others can ignore. I miss that ignorance, and it makes my heart ache to realize that my children will grow up never having known it.

I'm NED for now - and hopefully for a long, long time - but I'm forever changed by this awareness. It's not necessarily a bad thing, but it certainly makes me view this brief blink of time we get on this earth in a whole new way.


Anonymous said...

I am so excited for you. This is wonderful news! Woo Hoo!!

Luna O. said...

Great news, Tori! An insightful and poignant post. Look forward to seeing you in Boston. -Luna

Unknown said...

So very very happy to read your email, Tori. Every one of us whom receives NED news gives hope to the rest of Cancerville.

Anonymous said...

Congratulations on your great news!

Anonymous said...

This is fantastic to hear Tori! :-)

Unknown said...

Yeah! Great news... NED is a great friend to have and to hold!!!

Zuzana Tomas said...

And it's not just a realization for you but for all the other cancer patients following your blog and those bystanders (like myself)! Let's just say I really don't sweat the small stuff on days I get your blog link in my mail! Enjoy the rest of the summer and the beautiful fall ahead of us! And I really want to run into you one of these days--which parks do you guys frequent?

Corey Wood said...

You go Tori!!! Such awesome news. This adds such fire to all of us who are fighting. Now go celebrate!!!

Anonymous said...

Awesome! Awesome! Awesome! Such outstanding news. I'm sure you're finding NED Devine. :)

Shirlina said...

Awesome post, awesome results for an awesome person!!!
YAY!!! (doing a little dance right now)