Last Thursday, a week ago, I had the meeting at Duke where they told me that the tumor in my brain is growing.
The tumor is no longer shrinking, or even staying in its status. For eight months I was on a particular challenging chemo, and it was doing well. Until it wasn't. The tumor is growing. Visibly. Even I could see it on the MRI, and that's often not the case. Six weeks ago everybody at Duke saw how great my MRI was. "Great!" my medical team said. "Looks like it might actually be shrinking!" Six weeks later, on August 6, everything had changed.
|Not like mine at all. But you can see how an MRI|
deals with a brain tumor.
What does it mean? The coherent answer: My neurologists are taking me into the next level of chemo--the fourth. 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 week, every time I've woken up, I've felt painful misery emerge. I have the 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 for almost every moment: if I forget that I have a growing brain tumor, it comes back, and it sucks air out of my body.
Sometimes I'm okay. Sometimes I'm so unhappy that I can't imagine how I am going to get through this. I think at all kinds of levels. Often it's Maybelle. I'll wrap her up in my arms and press myself against her (tall!) body. And the ideas are fighting. 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 make sure of what her dinner will be like? Can I work hard enough that I don't dissolve until she's asleep?
Other levels are far uglier.
This week I've had a hard time writing and talking. Communication is tricky. This isn't happening because of the growing tumor--instead, it's that I'm churning. Parts of my communication abilities simply aren't working. Despite this challenge, I've got folks who are incredibly supportive, people here in Tennessee 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 experiencing pleasure and support from them 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. Are getting worse. Are a mystery.