“I can’t stand the rain

Against my window

Bringing back sweet memories

I can’t stand the rain

Against my window…”

-Ann Peebles, I can’t stand the rain

The Sound of Dread

Two months before any of this happened, Alyssa and I, along with some friends, went on a 25-mile hike down Northern California’s Lost Coast, camping on the beach along the way. It had been just before dawn, on the last day of our trek, when I heard the first scouts of rain testing un-rhythmically at our thinning tent.

Pit. Pat. Pit. Pit-pat Pit… Pity-pat-pat pit…

Alyssa lay asleep, warm in her bag next to me. Envying her oblivious state, staring at the top of the translucent tent in the groaning dawn, I wondered if the shelter could withstand the rain. Doubtful.

Pit. Pat. Pitter-pitter-pat…

Imagining what it would be like to pack up wet, then hike wetter still, the remaining 7-8 miles through a rain storm, I wanted to get up right then and get going. But no one was up. So I just lay there. Waiting.

There is always a point at which rain decides to rain. Before that, it is just those little scouts, tentative, testing, and there seems the possibility and the hope that it will pass…

…

…I’m at home now and under constant supervision. Alyssa has to bath me, filling a pitcher of warm water from the bath to pour gently over my head, me sitting cross-legged on the tub floor, too wobbly to stand. I wince in expectation as she pours the water down the right side of my head, over my U shaped sutures, but it doesn’t hurt. My scalp is completely numb still, and I’m only vaguely aware there is water trickling over my stitches. This vague awareness permeates. I feel so vulnerable. Defenseless. Dependent. I hate it. These feelings only seem to grow as the powerful steroids they put me on, leave my system. The talkativeness and expansive feelings fade and are replaced by a more conscious sense of dread. The early morning awakening is the worst. Every night I’m in bed asleep by 5pm; waking by 2am, or 3am at the latest. Then I just lay there. It rains almost non-stop for that month, and at 2am, it frightens me to hear it. I recall waking up on one such occasion just in time to hear the rain begin. As I lay there in the loneliness and the darkness, I hear the tentative, initial pitter patter. It really does seem to me as if the rain is just testing to make sure everyone’s asleep. It starts out scared, pitter pattering here and there, gradually growing emboldened that none of us react. Fearful, I want to wake Alyssa up; warn her. But a part of me knows I’m thinking crazy. Knows she desperately needs her rest. Selfishly because I know how much effort and care I take right now and I don’ want her to collapse. I’m a full-time job. I need her like I’ve never needed anyone. Well, except maybe when I was a baby.

So I lay there defenseless, helpless in the dark, filled with dread. A giant baby.

The PathologyReport

In Dr. McKnifeskills’ voicemail telling me he needs to talk to me about the pathology report, I can tell from the sound of his voice, something is wrong. I call his scheduler right away. He is clearly prepared for my call, with instructions to keep me on the line while they got ahold of Dr. Mcknifeskillzz. Mcknifesklilzz had just arrived in Mexico with his family to start his vacation, but he still wanted to talk to me. This can’t be a good sign.

“Melanoma.” Dr. McKnifeskillzz says with such disdain and contempt for the disease that I want to hug him. “Ok.” I say into the phone, which is on speaker, my Dad and Alyssa sitting next to me on our couch. “So what does this mean?” “It means, we need to get you into treatment right away. Gotta find the source, the primary, otherwise its just gonna continue to shed cells. You haven’t had any moles removed in the last year?” “No.” “And he’s just been to the dermatologist, not even two months ago to get checked.” Alyssa adds. “He was all clear.” “Sometimes they can miss it. Sometimes it can be in the eyes, in the gut.” McKnifeskillzz says. “We need to get you in, and have a complete exam, check your scalp, your nails, eyes. Need to find the source.” Then he adds, “There’s a procedure called gamma knife. Its radiosurgery. Focused radiation. I had a patient with s similar situation, underwent gamma knife, he’s been disease free for 17 years. He and his wife wrote a book about it.” “So what do I need to do now?” I say fighting the panic. My dad is already searching on the internet for some obscure form of treatment. “Not now.” Alyssa snaps at him. I’m grateful. I can’t handle some obscure alternative medicine approach right now. “My assistant Jennifer already knows.” Dr. McKnifeskilzz says. “She’s gonna be all over this. She will handle all the scheduling with Melanoma oncology. You’ll be called right away.

I thank Dr. McKnifeskillzz for calling me while on vacation. He brushes it off, says he felt bad about the initial diagnosis (he’d thought it was benign). I hang up and I just feel sick. I’d thought this was over; that I just needed to recover and move on with my life, not have to worry about this anymore. This is another moment that I don’t remember very well. I’m sure I got up to take one the lorazopam anxiety pills the doctors gave me. I don’t remember doing that, but I’m sure I did. I do remember opening my laptop to google “gamma knife.” I remember the first thing to pop up was an article on “survival rates.” The first sentence of the article read something like, “After such and such years, this number were dead..” I closed the laptop there, concluding my gamma knife research.

I felt defeated. And scared.

The Change Up

Several days later, and I’m in for a full-body PET/CT scan. They do a PET/CT scan of my entire body because they want to see if a trail of glucose will lead them to the “primary,” the originator from whence my brain invader came. What can I say about the PET/CT scan? It’s a little better than the MRI because the tube the shove you in is not quite as claustrophobic as the MRI tube. A PET is a little worse for you health-wise, because you get radiation, “about the amount you get on a cross country flight…”yhey always say. You can’t eat before it, either. They want your blood sugar at a certain level, low. The ultimate results of my PET scan is that they don’t find anything.

Next, they have me see an ocular oncologist. Sometimes melanoma can be in the eyes. This doctor does his thing with me and he doesn’t find anything either. He said he was not surprised,

“Melanoma in the eyes doesn’t go to the brain. It goes to the liver.” He says with a shrug and a nonchalance that I find terrifying. Then he tells me about a study he did in with patients who have eye cancer. In the study, there are two groups: Group A gets radiation treatment on the eye, while Group B gets a part of their eye cut out. Group A, he said reported better “quality of life.”

No shit? The group that doesn’t get there eyeball cut out seemed happier? You needed to do a study to figure that out? I don’t say this of course. I recognize there is probably more complexity to the study than that…I hope.

So, a week and a half after getting the Melanoma call from Dr. McKnifeskillz, Alyssa and I are back in his office waiting for him. He comes in, and first thing he does it begin inspecting his work. Doesn’t even say hi. This amuses me, so I just sit, looking forward while he examines my head, like its some thing. I don’t mind. He is a surgeon after all.

“Well, they’re both clear. Both the PET Scan and the Eye exam.” Dr. McKnifeskillz says. “So what do we do?” Alyssa asks. “Well, the cells were replicating rapidly. So you do need treatment. The thing about a Glioma is that it responds fairly well and quickly to radiation and chemo treatment. But it also tends to come back. “Wait.” Alyssa says. “So this is a Glioma? Cause I thought we were looking at Melanoma diagnosis? “Right, we discussed it at Tumor Board and the consensus, based on the negative PET and eye exam is this more likely a glioma. It’s a little confusing. Basically, you’re going to be written up in a medical journal as an incredibly rare case.”

I’m not really able to ask questions at this point. I can’t tell if one is a better or a worse diagnosis to have, and I’m afraid to ask. Dr. McKnifeskills answers that question without me having to ask.