I've been upset all day, crying, feeling desperate, having depression creep in. Two Thursdays ago, I had the meeting at Duke Cancer Institute, where they told me that my brain tumor is no longer shrinking, or even staying the same size. It's growing.
For eight months I was on a particularly challenging chemo, and things were going well — until they weren't. And the tumor has gotten so bad that I could see it on the MRI, and that's often not the case.
Six weeks ago, things were much different at Duke when everybody saw my MRI. "Great!" my medical team said. "Looks like it might actually be shrinking!" Six weeks later, on August 6, everything had changed.
Sharon, my nurse practitioner, walked into the room and sat down in front of me, her knees touching mine. She never does that unless there's bad news. "Your tumor is growing," she said. She held my hands as I started crying. I was so devastated I couldn't process what she was saying. A few minutes later, another doctor came in. She apologized but kept swearing about the situation. "This is bullshit!"
What does it mean? The simple answer: My neurologists are taking me to the next level of chemo. This time I'll have chemo plugged into my body. It's an IV. I'll have my blood taken every week, and every other week I'll have a full day to go through the IV process. I won't be sick, but I'm going to be exhausted on the day of IV and a day or two after. They told me explicitly that they don't know how it's going to go for me. It seems pretty clear that I won't be nauseated, but I will be exhausted. But I'll be okay. I'll be working, and it'll be okay.
The deeply emotional answer: For the last two weeks, every time I've woken up, I've felt a painful misery emerge. I have the usual happy moment — "I'm awake !" — and then quickly I trace through what's happening: "Wait, where am I? Oh, fuck, it's a brain tumor." This actually happens to me constantly. Every time I forget that I have a growing brain tumor, the realization that I do comes back, and it sucks the air out of my body.
Sometimes I'm OK. Sometimes I'm so unhappy that I can't imagine how I am going to get through this. I think about all kinds of things. Often it's my daughter Maybelle, I'll wrap her up in my arms and press myself against her (tall!) body. What will I do with Maybelle? How can I take care of her when I might be so exhausted that I won't be able to pick her up from school? Who will fix her dinner? Will I be able to do all of this and not fall apart until after she's asleep?
Other thoughts are far uglier.
This week I've had a hard time writing and talking. Communication has been trickier than normal. Parts of my communication abilities still aren't working.
Despite this challenge, I've got folks who are incredibly supportive, people back at home in Tennessee, where I'm staying this week, who have gone on walks or have had Ralph's Donuts with me. My parents are so freaking amazing that I'm able to make it through this day. And their support and their willingness to have fun makes me feel both grateful and devastated.
So there you are. If you've been saying kind words — and so many of you have — then I need to tell you that things have gotten worse. And they are getting worse. It's all a mystery.