“I’m sittin on the dock of the bay, watching the tide roll away, Ooo, I’m just sittin’ on the dock of the bay Wastin’ time” -Otis Redding

The Talker

Fresh with my shiny new Glioma diagnosis, Alyssa and I leave Dr. McKnifecskillz’ office, and return to the neuro waiting area. It is a large open room with fantastic views overlooking Golden Gate Park, the Bay, even my neighborhood. I recall sitting there, staring out, thinking something about Glioma, and I know it wasn’t good.

“What are you in here for?” A guy who looks barely older than me, is sitting across the way looking at me quizzically.

“Brain tumor.” I say.

“Me too. Who’s your doctor?”

“It was Dr. McKnifeskillz, but now I guess its gonna be Dr. Terry now.”

“Mcknifeskillz? Heard he’s good. I had Dr. Brom. You had surgery?”

Silently, I turn my head to the left so he can see my scar.

“Oh yea, nice!” The dude smiles big, leaning forward in his chair, both elbows on his knees.

He’s a talker. Reminds me of the cell-mate character in some prison movie. You know, the guy who’s already been in prison for a while; the friendly talker who gives the new guy the scoop on how things work. He’s likable, but you can feel there’s this loneliness, this desperation to him, like he’s been starving for someone. He’s not quite like the other prisoners; he’s not supposed to be there. He seems too young. You can also feel right of the bat; part of the reason he’s in trouble is he can’t keep his mouth shut.

“When you have it done?” He asks.

“…Two weeks ago. ”Alyssa fills in the silence I leave while searching for the answer.

“You look great!” He says.

“Yeah, I feel ok.”

“OK? Look at the rest of these fucking people.” Nodding his head about the room, seemingly oblivious that he’s being loud and potentially insulting.

I look around the room, and I can see that the rest of these ‘fucking people’ are oblivious. For the most part, they’re far older. They’re heads are bandaged. Some are in wheelchairs. I don’t belong here; maybe neither does The Talker…except we do. I down look at my cane; my heart sinks blackly.

“What about you?” Looking back up, pulling myself out of my inner puddle. “You seem alright…Actually…you seem fine.”

“Yeah, I’ve been in treatment for almost two years. It’s nothing . Nothing ,” he emphasizes. The Talker leans back in his chair, scoots his butt forward, legs extending way out into the room, forming a ridiculous seated slouch.

I find it amusing, likable even, the way he sits and talks to me as if we are the only people in the room, almost as if it’s his living room.

“How big was your tumor?” He asks.

This fucking guy. He’s all in my business.

“1.5 centimeters.” I say.

“Good. Good. That’s good. Not too big.”

“Too big for me.”

“Yeah right, of course.”

“How big was yours?” I nod at him.

“Mine? The size of a grapefruit.” Still leaning back in his ‘Adolescent I don’t give a shit slouch.

“Holy fuck!” I forget I’m in public now too.

“Yep. Yep.”

“How’d you find out!? How’d you realize it was in there?” I am in awe, not only that he’s still alive, but also that he seems to be normal…more or less.

“Had a grand mal seizure in Tahoe.”

“Whoa.”

“Yep,” Moving his eyebrows up and down. “right there in the casino. BAM. Came right outta my chair onto the floor.”

“And they took it out?”

“Yeah, they did a craniotomy just like you. I recognize your scar. Mine was just a little bigger.” He smiles, “But I’m fine now. Been two years. We celebrate it right around the same time as my daughter’s birthday. She calls it Daddy’s Brainday. She’s got a birthday, I got a Brainday.”

The talker goes on about his daughter in the most regular, normal way, with plans for the future that include him. The juxtaposition hits me like getting my hand slammed in a door: This guy has a little girl. I can’t think of two things that should go together less, than a brain tumor and a little girl. It’s not supposed to be this way. He’s not supposed to be here. I But he is. I start to really like The Talker.

“You gotta try and get into the clinical trial with amazopramalin.” The talker says. “It’s chemo, but its just pills, twice a day. Doesn’t have all the same side effects as regular chemo. I’ve been on it almost two years. I bet that’s what Dr. Terry will put you on. She’s my doctor too.”

“Oh yeah?”

“Yeah, she’s good. She doesn’t sugarcoat anything. She’s totally pessimistic. I’m always telling her I’m doing great! She worries more about all this shit,” motioning to his head, “than I do. I’m fine. You’ll be fine. You look great, man. I’m telling you. You’re doing great!”

A voice gets the Talker’s attention. Pulls him out of his Orientation speech. He gets up. Tells me I look great again, and walks toward the summoning voice. I find myself feeling genuinely hopeful for both of us as he leaves. But I can’t get past the buried message in all his words: that his doctor is far less sanguine about his situation than he is. And it gnaws at me.

Still a Zebra in a Top Hat

Dr. Terry, my new quarterback, is young, warm, intelligent, and to-the-point. Just like The Talker described. She explains the Glioma diagnosis and treatment “options.” I recall Alyssa asking more about how and why they went from an initial benign diagnosis, to a Melanoma diagnosis, and now to a Glioma diagnosis. I guess she was starting to worry about the docs’ capacity to accurately determine what this thing in me was. The uncertainty and the changing were hard on me. I couldn’t get any ground under my feet. Every time they changed it, it was like reliving that first-time-you-get-the-bad-news feeling. You just never get a chance to settle in, move forward. Its like I’ve got Ramsay Bolton for a tumor, and he’s getting off just keeping me in this perpetual state of shock. Its fucking brutal.

“You are definitely a zebra in a top hat. Your case is very unusual. We can’t get you totally figured out.” Dr. Terry smiling warmly.

Dr. Terry goes into more detail about her treatment recommendations and I sort of float away. I remember her saying treatment will involve chemotherapy pills twice a day and sweeping radiation over a substantial portion of the right side of my brain. Apparently Glioma sends out tendrils for the purposes of brain colonization. At a certain point I realize Dr. Terry and Alyssa are looking at me. They want to know what I think and what I want to do.

“I obviously never wanted to find myself sitting in an office like this;” I say, ignoring their question. “And I know you don’t have an answer for my question: But how did this happen?” I’m shocked and mortified at the pleading tone of my voice, and look at the ground, embarrassed. “That is something we cannot answer.” Dr. Terry says. “We don’t know why someone gets a brain tumor like this. It’s not from anything you’ve done.” She seems to know what’s at the bottom of my question: I believe I have brought this upon myself. “Its not like lung cancer and smoking.” She continues. “It’s different. Very young children get brain tumors. They don’t smoke. We just don’t know.”

I don’t believe her, though. Sitting there, somehow I know I caused, or at least contributed to this. I don’t know what you think about hat Dear Reader. I don’t know what else to say about it. It is just what I was thinking.

“What we do know,” Dr. Terry gets back to the point, “is the cells in your tumor were rapidly replicating. We need to be aggressive with treatment.”

Silence now. They’re both looking at me, again.

“Fine. Let’s just do it.” I say. “Let’s get started. Now. When do I start? Just tell me where to go.”

“You’re sure?” Alyssa is holding both my hands, moves her whole body so her face is directly in front of mine, close. “You can think about this.” staring at me with this quiet emphasis.

“No. I don’t want to. I don’t want to think about this. I don’t want to wait if there is this shit still in there, growing. I want to kill it. Let’s just get on with it. Now. Let’s just get on with it.” I’m looking around Alyssa now, at Dr. Terry. “Where do I go? Who do I call? Let’s just do it.” I demand.

“Giterdone.” Dr. Terry is poking fun at me a little.

“At least she has a sense of humor.” I think to myself, taking it down a notch.

Going Nuclear

Two days later and I’m meeting with Dr. Carla. She’s the radiation doc in charge of giving all the cancer patients their dose of radiation. We are two hours late for the appointment, some sort of miscommunication. They make time to see me anyways. which doesn’t make me feel special. It makes me feel nervous.

“Thanks for making time, sorry about being late.” Alyssa says to Dr. Carla’s Resident.

“That’s ok. The Resident says. “Glad you’re here. We were afraid you had missed it.” Like they’d been talking about me. More and more, I get the feeling that they view me with a greater sense of urgency than I had realized. I think about what Dr. Terry said the other day, ‘rapidly replicating.’ -Oh right.

Dr. Carla explains that I will be coming in to be irradiated (she doesn’t actually use that word) Monday through Friday, five days a week for five weeks. I’ll then get a week off to rest, before coming back to do it all over a again. There will be side effects.

“…cognitive changes, mild memory issues, the possibility of secondary cancers due to radiation…” Dr. Carla says.

Dear Reader, I ask you: How the fuck, does treatment for cancer, cause more cancer? It is irony at its most grotesque, if you ask me.

“What kind of memory issues?” Alyssa asks.

“Like, ‘Where’d I put my keys,’ kind of stuff.” Dr. Carla answers. “Also fatigue, maybe not at first, but it gradually builds up. There is also the possibility of necrosis.”

Ah yes, Necrosis. Great. I’ll let you google that one, Reader.

Alyssa asks the doctor more about all the diagnosis changes. She’s not totally convinced.

“So one of the diagnoses was Melanoma, before they changed it to Glioma.”

“That’s right.” Dr. Carla agrees.

“And they’ve now gone away from Melanoma because they can’t find anything on the PET scan or on his body.”

“That’s right.”

“But it still could be Melanoma?” You’re not totally sure?”

“That’s correct.”

“Would this be the treatment if it was Melanoma?”

“No.” Dr. Carla says…Silence… “I know this is difficult with the back and forth, and the uncertainty, and not being able to get a 100% diagnosis. But your case is so rare. This is as close to a medical certainty as we can get here.”

“If this was your husband, or your brother,” Alyssa asks, “is this what you would do?”

“It is.” Silence. Dr. Carla continues. “Look, there are a lot of smart people looking at this. He’s been presented at Tumor board so much. They’re all in agreement, but you’re right to ask about this, because its not 100%. Its a tough case.

We agree to move forward with radiation treatment and they schedule me to begin the following week, on Monday. I’ll start taking my chemo pills then as well. That Friday, three days before I’m slated start everything, I get a call from Dr. Carla.

“Hi John, your GS500, the genetic testing you did about 4 week ago…it just came back. They’re saying it’s classic for melanoma. We need to pivot.”

fuck you Ramsay.