What I know

First, the medical stuff: I went to the dermatologist today. He gave me a full-body skin check, and felt my lymph nodes. They felt fine, and he didn’t see anything else unusual (though I have lots of moles). He talked to me about my oxymoronic diagnosis—“amelanotic melanoma.” It means, dark without any pigment. We talked about insurance issues, since I’m a student and he wants to see me frequently for the next several years. (As long as we have our current health care system, I’ll have to have jobs with benefits—I won’t be able to find insurance on my own.) A friend had come with me, and the doctor answered both our questions. I told him I felt like I’d fallen down a rabbit hole; I have this scary sickness, yet I feel fine—and I was completely normal last Thursday. He told me what interferon is, and how it works—essentially I’ll feel like I have the flu for a year. He was really gentle, compassionate, personable. He’d given me his home number over the phone on Friday when I first got the diagnosis. I don’t know if I’ll use it, but he’s open to frightened patients calling him at home.

I went on to the lab for a blood draw, and radiology for a chest x-ray. Checking in at the latter, they gave me a wristband with my name and Kaiser number—I don’t know why they needed it, but they checked it when they called me back. The wait was really long, and they called us in batches—I think five were in my group. It really did feel like a cattle call. They gave us gowns, told us what to strip to, let us in to dressing-room stalls. They called my name, did the x-ray, and let me leave. Then we went to the pharmacy to pick up my barium for tomorrow.

My schedule for the rest of the week: I’m meeting with a head/neck surgeon tomorrow morning, and getting a CT scan in the afternoon. Wednesday, meeting with an oncologist. I’m also getting a PET scan in May. We’ll go from there. (I left class early this morning, because I got three calls from Kaiser while I was watching presentations. I was too wound up to sit still, after that.)
***

“Hey, what are you doing Wednesday?”
“I don’t know yet.”
“Want to go to Oncology with me?”

This is normal, casual conversation now. I have an oncologist. And I feel physically fine.

I peeled off my band-aid, threw away the wristband, and we left the hospital. Except for the bottle of barium I carried, I looked no different. I act no different, most of the time. I’m still me. Yet, I am different. I heard one word which changed my world forever—and I didn’t hear much after that. The best-case scenario would be if it hasn’t metastasized. They’ll cut it off of me, and make me sick for a year. I’ll be monitored for life—but the terror will be flooded with relief.

Obviously, I don’t know yet whether this cancer is in me, or merely (?) on me. Still, you don’t go to this place, even for three days, and leave the way you were when you went in. Fear for your life narrows your focus, amazingly quickly. It’s like my peripheral vision is shutting down. I just want to gather myself, and my community around me, and heal.

I know something I didn’t know before. I’m in a place of strength I hadn’t imagined. I'm leaning on people, but I'm not bleeding on them. I feel like I’m in a silent siblinghood—silent, that is, until a new sister or brother shows up. Unknowingly, I opened a secret door. There are many people in the room before me. Those who know this fear, know how to listen when others find ourselves here. You can just sense it. You know.

My friends and my teachers are deeply present—and my teachers, gracious and flexible. I don’t have any deadlines for the rest of spring, and I got excused from some group work I hadn’t done. It’s an incredibly sucky reason to get out of your work—but I’m grateful to them for giving me this space. It’s the space I need, to go inside.

My advisor told me, she doesn’t know what God is doing with me. I don’t know either. But I know that it will become obvious. This will be, what it is. If I can survive it, and give something to the world in the meantime, okay. I can’t choose not to drink the cup—it got poured down my throat, over the phone on Friday. I couldn’t help but gasp it down. I can’t control what is in my body. I can control what I do with it. I can choose how I live. I choose to live with as much strength and grace as I can find.

Sometimes I wonder if I’m freaking my friends out on my behalf, for no real reason yet (since I don’t know fully what I’m dealing with). I still look and act like me, and I don’t feel sick. But I get random hugs at lunch now. It’s sweet—but it’s not entirely helpful. I don’t always want to be reminded that I’m facing a very scary thing. Listen when I want to talk—but also be aware that I can tell when you’re acting out of your own fear, or being present to me. Don’t ask me to take care of your need to care for me. Touch me, yes—but in love. The same love you felt for me before any of us knew I had cancer.

“…I [have] cancer.” Whoa. I’m still not used to that. I’m reeling, and I know my community is reeling for me. You’re also bearing me up, with amazing presence and love. For that, I can’t thank you enough.

Thank you, a thousand times thank you. I have half the planet praying for me—and I know I’m held in grace and love. Many, many people are holding me before God. Bless you all.