Friends and Family,
Scanxiety has been alive and well for Genevieve and me. First, we turned our trip to San Diego into a three-legged trip that started in Hawaii. That was wonderful, but it meant I had to get my CT scan in Portland two and a half weeks before I met with the oncologist in San Diego to get the results. That’s a loooooong time to wait to find out if cancer is growing!
To complicate it, my friend Shelley, who had No Evidence of Disease (NED) for over two years, asked her doctor to do a brain MRI, because it’s protocol to do them every two years. While the rest of her was cancer-free, the MRI showed three brain tumors. They took care of the tumors, but it left me concerned, since I hadn’t had a brain MRI in over SIX YEARS. I appreciate Shelly telling me about her experience. That cancer could be poking Swiss cheese holes in my brain, and I might be the last to know. I asked my doctor to order an MRI for me, so we were waiting for THAT news for two and a half weeks as well.
It seems there’s always something that can add to the worry. This time, I had been coughing more for a couple of months. So far coughing has been a terrible predictor of when the cancer is progressing for me, but it’s a well-known symptom that’s hard to ignore. Add to that some stress with a neighbor that has been going on for months, and there was a lot on our minds before we got to San Diego.
But the trip to San Diego didn’t go as planned. A mechanical problem delayed our takeoff, which put us past the flight arrival curfew in San Diego. Because of that, they re-routed our plane to LA, and then bussed us down to San Diego from there. We finally arrived at our hotel at 5:30 in the morning, with just enough time to take a two-hour nap at our hotel before getting up and going to my appointment.
A little worse for wear, we showed up and tried to be prepared for anything.
The results couldn’t have been better. No changes in the CT scan results. We were thrilled!
The brain MRI results were “unremarkable,” so you can take that however you want. I’m choosing not to take it as an insult. Really.
With all the good news in hand, we waited in a sunny outdoor courtyard until my new supply of the medication was ready for pick-up. I launched into work on my computer and was carrying on like it was just another day.
But then Genevieve burst into tears, and couldn’t stop sobbing. She said she didn’t realize that she had been holding her breath for so long. Even though we tell ourselves that everything is going well, every scan results in a yes/no, cancer growth/no growth verdict. That makes it feel like there is a 50/50 chance that the cancer has started progressing again.
It feels even more impossible that things are going so well, because on average this drug works for 13 months without progression. It’s now been five years for me!
Does that mean I’m overdue? Or that the standards just don’t apply to me?
What Genevieve and I believe about that depends on when you ask us. If it’s now: I’m the exception, and that’s all there is to it. If you ask during that time between the scan and seeing the doctor, well...
Don’t ask.
Love,
Dann