this is a collection of off-topic material.
I’m escorted into a small, dark room. A medical sort of person presses a techno-wand around my body. She monitors a computer screen, where my inner-systems are projected. She clicks buttons, takes a series of pictures.
I don’t know what to make of the fact that she keeps the screen turned away from me. It’s probably fine.
She completes the scans, mentions that my doctor will be calling with results and releases me into the wild.
The call I get the next day isn’t from the doctor, it’s from her receptionist. She asks me to come in on Friday afternoon. I say, “Okay,” to the phone in my hand.
I wake up, drink coffee.
The thing is, the doctor’s office I go to has a website for patients, where you can log in and view various types of personal information. You can sign up for it, create a personal page and view your appointment times, current meds, and so on. You can also see lab results.
After the coffee, I sort of hold my breath and check the site. I see that the lab results are indeed posted. I click the link. I see my name and the phrase “mass detected”. I close the site. I close my computer. I walk around the house for a bit, aimless, not really thinking anything in particular. I stand under a turned-off ceiling fan and listen to the lack of noise.
I get cleaned up, dressed, drive to the appointment.
I sit in the waiting room for awhile. I feel shaky, spacey.
I eavesdrop on two receptionists who are having a lengthy conversation about vodka. I periodically interrupt them by pumping my fist and yelling “Woo! Vodka!”
They smile the first time, then look sort of confused the five other times I do it.
Waiting, waiting. Finally, a nurse appears, calls my name. She asks, “How are you?”
I laugh and say I had previewed the lab results on my personal account. I tell her, “It was strange. I had a strange morning.”
The nurse cringes, but doesn’t say much, just, “The doctor will be going over the details with you.”
She gets me situated in a typical doctor room. Examination table, a few chairs, a computer…cotton balls and latex gloves and so on.
I sit in a chair…the nurse leaves.
The overly-white walls and fluorescent lights prickle my thoughts, it’s an uncomfortable room. I seethe and pull my hair and wait.
The doctor walks in, she leans back against a wall and everything begins to go really fast.
She says, “So, the images they sent, it doesn’t look great. The mass is large and heterogeneous. We’re not really going to know more until they examine the tissue. Okay? That’s the next step. What will happen now is that I’ll get you in with a specialist…and we need to do that ASAP. It’s not a 100% certainty that this is cancer, but the images I looked at…the size and the heterogeneity, that’s not what we wanted to see.”
I’m hearing the words, but not really the meanings. My mind is just catching sounds, quietly storing them away. Mostly I’m just smiling and trying to remember where I am. I pat my pockets, hear the sound of car keys. I must have driven somewhere. This lady is talking about something. Words and sounds and I look over and see cotton balls and a pamphlet with a cartoon uterus on the cover.
I stand up and say, “You seem nice. I want to go home now.” The doctor blocks the door, says, “M, we need to talk about this, make sure we’re on the same page. Okay?”
“That’s okay, I think I get it. You said ‘mass’ and something ‘specialist’ and that’s fine. I understand. I really, really feel like I want to be home now.”
I slowly try to maneuver around the doctor…she holds her hands up, palms out, continues to block me.
She says, “Step over here. If you look at these notes from the radiologist, you can see some of what I’m talking about. These are details from the scans.”
She talks and talks. She’s pointing at a computer screen. She keeps repeating the word “heterogeneous”. Then she asks, “You understand what that means? Heterogeneous?”
“I guess I know the usual definition,” I tell her. “Things that are different. Um, it’s the antonym of homogeneous. I might not know what it means in this particular context. And that’s okay. Thank you. I’m leaving now.”
She gently takes my arm, walks me away from the door. She says, “What you want to see in a scan is…everything the same. All clear, everything clear. Your scan showed…”
She starts tapping the wall in different places. “The mass was spread around. Here, there. Heterogeneous.”
I ask, “It’s spreading?”
“We don’t know that. No way of knowing that at this point. We’re still in an early phase. All we know is what it generally looks like. Now we need a tissue sample to see what’s really going on.”
I make a play for the door. I dart towards it, open it, start to leave. And for some reason, everything changes. I’m no longer actually in the room. I’m now at a great distance from everything. I can see the room…it’s right there in front of me, but far away, as if I’m watching it on a tiny screen.
So, what happens next is that I just watch stuff happen on that screen. None of it involves me, so I don’t really mind. I drift there, in my far away place, placidly observing.
The screen I’m looking at shows a point of view. There’s a wall, bit of ceiling, a door, a vaguely familiar human. What’s odd is that the wall suddenly starts to resemble a floor. I see the point of view swerving into it as the gravity shifts. The ceiling does a weird flippy thing. The human steadies the point of view with one hand and starts yelling a name over and over.
Another person runs into the room and I hear, “Grab him, grab him, he’s falling, get that arm.”
I’m not exactly sure about the next part. The point of view shifts around. I think the people man-handle it backwards, into a chair. Something like that. This is a weird show.
Then I’m back. I resume the situation. I remember this is all me. The doctor has her eye right in front of my eye. She asks me if I can remember my birth date.
I think about it. Birthdays seem very abstract. I shrug.
She says, “How many fingers am I holding up?”
“That’s too many,” I tell her.
“A moment ago, I said the name of my nurse several times. Can you remember her name?”
The doctor is gripping my wrist. She says, “Pulse up, get the BP.”
Nurse checks my blood pressure, says, shows the doctor the numbers as they pop up on a little screen.
The doctor says, “M? Please stop trying to stand up. I need you to breathe. Slowly, okay? Can you remember the nurse’s name? I just called it out.”
“I can’t,” I tell her. “I’m having a little trouble concentrating. I’m sorry. I remember that I used to collect Tetris music. Like, various performances of music from the original Tetris. I was mostly interested in what the game called theme C, which was actually a menuet that I like. It’s Bach’s French Suite number 3. I can’t remember when I collected this stuff. It was a little before the internet was a real thing. You couldn’t google it, you had to get these hand-made catalogs put together by like-minded weirdos and you could…you know, you could order these little mixed tapes with different versions of the Tetris music and you could either buy them or you could trade the tapes around. It was fun. I remember…”
The doctor interrupts, asks me to take deep breaths. She keeps saying, “Slow down, M. You need to breathe.”
It feels like I am breathing. Probably? Maybe not. Mostly I’m thinking about those old music tapes. I wonder where they are.
I ask, “Can I leave now?”
The doctor says, “Oh, no. I need to see your blood pressure going down first. You’re over-stressed. It’s not safe for you to leave like this.”
She puts her hand on the side of my head, says, “Take deep breaths.”
To the nurse she says, “I need to get the appointment with the specialist set up. I’m going to make a call. Check his BP every five minutes. Don’t let him leave.”
She walks out of the room.
I look at the nurse and say, “It’s weird that they can’t make a good Fantastic Four movie. You’ve got stretchy guy. Guy made of rocks. See-through lady. I can’t remember the other one. I think he explodes. You don’t even need a great story to make that work. You just get ’em doing, you know, shenanigans or whatever and that should be enough. I don’t understand the problem.”
I talk, on and on. The nurse politely nods her head. She says a few things, but I can’t hear the words. I nod politely. My blood pressure gets checked twice.
The doctor returns, asks the nurse how I’m doing. Nurse says, “High BP. He seems disoriented. Or…I don’t know his usual conversation habits.”
“It’s kind of a factory setting, the confusing parts,” I tell them.
Things seem to be slowing down, resuming normal reality parameters.
“So, I had a bad moment there,” I say. “I apologize. I sort of…I think I just had a bad moment, but I feel okay now.”
The doctor asks if anyone can drive me home.
“My one friend is out of town,” I tell her. “My family lives out of state. I don’t have any other friends.” I laugh and say, “This is the kind of shit people warn you will happen if you’re low-social. Who’s going to drive you home from this or that or whatever?”
I stifle another laugh because I don’t want her to check my blood pressure again.
The doctor explains that a follow up appointment is being scheduled with the specialist. They will call me with the details. She adds, “I’m prescribing something that will keep your blood pressure down. It usually checks out okay, but it’s too high today, M. You need to really rest as much as you can.”
We finish, she waves me toward the exit. To leave, I have to go down some stairs. The doctor tells the nurse to follow. I make it down all right.
As I walk past the receptionists, I yell, “Vodka!” and exit the building.
I sit in my car for awhile, just staring at birds. As I’m driving away, my friend calls and asks, “How did it go?”
I wake up mid-conversation. I seem to be chatting.
I can hear words streaming out of my head. I look around and a nurse is sitting next to me, nodding, chatting back.
I’m laid up, covered in a blanket. I pause and remember where I am: post-surgery, the recovery room.
I pause whatever I’m saying and tell the nurse, “I think I just woke up.”
She smiles and replies, “Oh, you’ve been up for a bit, just talking away”.
“I guess my mind hadn’t caught up with my words. What was I saying?”
The nurse describes the last five minutes…said my eyes popped open and I immediately asked if there was any coffee. “First words out of your mouth,” she says.
I look at the table next to me. I don’t see any cups. I ask, “But is there any coffee.”
“Let’s just wait a few more minutes before drinking anything. ‘Til you’re properly awake. Would you like some ice chips?”
I don’t say anything. I maybe fall asleep again. I wake up, once more seem to be mid-conversation. The nurse is still there. We seem to be talking a lot, even though I’m forgetting everything.
My body hurts. I cry a little and say, “My body hurts.”
She asks me to number the pain on a scale of one to ten. I stare at her for quite a long time. She gives me a pill, with a small bit of water. I stare at the ceiling and talk and talk. I can’t keep track of the words, they’re smoothed out like river stones.
The room: I notice it’s more of a hallway. I see a lot of people going by. I get curious about them. I try to talk to each one, saying, “Hey, hey…where are you going?”
They’re all fast-walkers, so they zip past, never say anything. The whole week has been like this…a lot of strange faces drifting by. Some of them spend time with me, some of them move on. Everyone has one specific thing they do and they switch out constantly and vanish. It’s an underworld.
The same nurse is still sitting next to me, so I ask her where everyone is going.
“They’re just busy,” she says, “Just doing work. Are you still in pain?”
“I don’t think so.”
Some guy goes by. I remember him. A doctor. Anesthesiologist. I mumble, “Hey, I know that one.”
I start to notice that the nurse isn’t just chatting, she’s asking questions…a lot of them more than once. When I correctly tell her my birth date for the third time, she says, “Well, M, I think you’re awake now. Let’s get some coffee.”
So I sit up a bit, drink coffee from a very small cup.
The nurse has a lot of small talk questions. Usually small talk sounds like static to me…it makes my head hurt. But the way she asks things, it helps me focus…the words and ideas are all easy enough to follow and it helps me stay awake.
Eventually, I ask, “How did the surgery go? I forgot to ask earlier.”
“Good,” she says, “I was told everything went according to plan.”
“Were you in there?”
“Nope,” she says, “I’m recovery room today.”
“The operating room was weird,” I tell her. “There were more people than I was expecting. It was a real scene. Lot of people. Everyone was busy. They were playing this music…it had a Cuban sound. Festive music. People kept hooking me up to things. It was a real scene. Wait, what time is it?”
I look at a wall-clock. The numbers seem hollow. The nurse says the time…I can’t make sense of it. But I nod, pretend to understand. I don’t want her to start repeating the birth date question again.
Some guy in a bed gets wheeled by. Ghost, like me. He looks awful. I pat my face, wonder how I look.
Nurse asks if I’d like my friend to join us and I would like that, so the nurse leaves and a minute later they’re hanging out in the hallway with me.
Sarah asks the nurse how I’m doing. The nurse says, “Talkative. It’s a good sign. He just woke up and started talking. It’s a best case thing.”
Sarah asks how most people come out of sedation.
“That’s the thing,” the nurse says, “you never know. It’s unpredictable. Anyone can have any sort of reaction as they wake up. Some people wake up angry, agitated. They wanna fight.”
“That happens a lot?” Sarah asks.
“It happens. Gotta have a nurse with each patient, just to monitor the wake up.”
They talk. Strangers rush by. I think about empty numbers.
Sarah tells me that the surgeon spoke with her afterwards. “He said it was all fine. No complications. He told me that as they were rolling you into the operating room, you yelled ‘Let’s do this!’ He thought that was funny. I guess he was worried. He said during our appointment last week, you seemed kind of out of it…disconnected. He thought you were more alert today.”
I tell her about the scene in the operating room…the Cuban music and the people and all of that. I mention being hooked up to weird machines.
I look down at my blanketed self and see arms bruised up from all of the recent blood draws and IVs. I get a little bummed out and say, “I feel super old.”
Nurse says, “Nah, 41. That’s nothing. Get through the next part…is it chemo or radiation?”
“We don’t know yet,” Sarah says. “Lab will check out what they removed today before deciding.”
“Get through the next part,” the nurse continues, “and you’ll feel like your normal self again.”
I have to remind myself that “normal self” is a less ominous phrase for most people. I get what she’s saying, though.
I yawn and shift around. Nurses dart by. Elderly lady in a wheelchair rolls past us. Hey, there’s that anesthesiologist.
Nurse asks in a monotone, “Did they get it all today? Do they know?”
I feel my arms. They’re sticky from some kind of tape.
Sarah says, “Don’t know yet.”
People laugh in a room somewhere.
I listen for the ticking of the wall-clock; give it another look. Its numbers stay cryptic. The clock’s hands are either stuck or untethered.
Probably the whole point of language is to give us things to say when there’s nothing to say; words as bookends for silence.
I sent my old therapist an email informing her that I had cancer, and that it had spread into my lymphatic system. I didn’t add, “See, my depression was right!” but only because I thought it was implied. I feel like I won an old argument.
I didn’t tell my parents for probably too long. I didn’t know how to tell them. They would call and I would talk about weird birds I had seen or my discomfort with new shoes or whatever. Eventually, I got around to it. They said the normal sort of things people say in these situations. I nodded, in the way people do. Context-appropriate nodding is a skill in my skill set. It gets me through a lot of meaningless social encounters…which, I now know, includes telling your parents that you have cancer.
The trajectory has been: diagnosis thing and then surgery thing. Now I have 2 weeks of down time and then I start in with radiation treatments. A month of that. It’s all going into my stomach area, so I may have some mildly sick times ahead. The oncologist said, “Stock up on crackers.” But he also looked at lab analysis of the stuff they removed and he said, “Your cancer is very mellow.” I didn’t know mellow cancer was a thing, but apparently it is. The magic radiation beams are expected to clear out what remains.
Every day I sit around for about ten minutes and try to figure out whether or not I’m depressed. I don’t seem to be. I could be, mostly I’m sort of numbed out and averse to leaving the house. That’s pretty normal for me, though. It’s probably fine.
I don’t generally believe that I have much control over anything and that mindset has been helpful during all of this. I mostly feel like a sleepy passenger within the experience. Events pass by. I try to notice. Things happen, but it all seems far away. The surgery is a perfect example: all I had to do was sleep on a table and then wake up and drink coffee.
Radiation will involve me resting on a table while being shot with the magic beams. And then I go home and eat crackers. I never have much to do with any of this. I am a passenger. It’s hard to stay awake for it all. Every clinic I go to, someone asks for a picture ID and proof of insurance, so that’s my primary responsibility…to have a pocket and to make sure that the two relevant cards are inside of the pocket. In terms of me and my involvement with the situation, the bar is low.
Because of the mellowness of the cancer and the fact that radiation will likely wipe out the remaining stuff, I may be through this by the end of the year. That means that I am lucky and I am obligated, by cosmic laws, to feel grateful. I am not one of those people who believe all things happen for a reason. But, when you believe the way I do, it means you have to feel grateful any time you survive the unreasonable.
My thoughts are doing well enough, anyway. My emotions have been more erratic. Numbly erratic, it doesn’t have to make sense. I can’t seem to have a stable set of feelings about anything. I’m blank for the worst stuff and then emotional when I normally wouldn’t be. Surgery day: upbeat, trying to make nurses laugh. Then, other days, emotional at the grocery store because cereal boxes are going by or hey there’s a bag of flour, everything is random, fuck it, feelings just pinballing around, without purpose or antecedent.
Even when I’m doing well, I have to constantly hold off bleak thoughts. I don’t know why that’s an issue. It’s not rational. But the point is that, in order to navigate this situation, I’ve intentionally made an effort to learn as little as possible about cancer and my specific medical interventions. I don’t need that kind of information inside of my mind. I’ve been willfully ignoring a lot of discussion. The general physician who first detected an issue, she wanted to show me images of the mass. She was ready to do a whole lecture with that image right in front of us. I politely refused to look at her computer or listen to a description. Surgery guy offered to tell me, step by step, how the procedure would work. I just waived him off and said, “No. No, thanks. You’ve got this.” When medical staff call with lab results, I just hand the phone to my friend and say, “It’s for you.”
I know that no one comes to this blog for medical updates. I apologize for that. As mentioned, I’ll start the month of radiation soon and then there will be follow up CT scans and blood work to see if any cancer remains in my system. That should be that, and then I can get back to posts on other topics that also seem painfully off-topic.
i’m in a waiting room. i’m here too early. a month of daily radiation starts today. it’s halloween.
i’m spending a substantial amount of time in waiting rooms lately, in various cancer clinics. the inspirational pamphlets and posters that litter these places are the stuff of pink-tinted, hallmark nightmares. if i never again see an image of a beach…with, say, a shell beside a snippet of uplifting text…i’m okay with that. sunset lighting and stenciled cursive…just, no. fuck.
on the other hand, everyone else in these waiting rooms is in the same boat. it’s a weird boat. the small talk has been…let’s say vibrant. it is lean, zero bullshit small talk. people sit in a room full of others who “get it” and they lose whatever filter they had prior to the experience. you take a seat next to a stranger here and the personal sharing goes from 0 to 60 in no time. i learn more about the human body from 5 minutes in a cancer clinic waiting room than I did in 20 years of public education. (though admittedly, public education on the topic of human biology is a low bar to clear.)
the place i’m at now, volunteers drop off cookies and coffee each morning. the cookies are plain, rock hard grandma cookies. they come in tins. blue tins. grandma cookies. no one likes them. everyone eats them. they’re plain and inoffensive and they soak up stomach acid and help a little with the nausea, so everyone eats them.
the pamphlets and posters…you learn they are put into place by the head nurse. and they have a newspaper story about her framed on the wall. it’s moving and it makes you cry. she almost died from cancer. she had a multi-year, brutal struggle with it. and then she became a nurse at a radiation clinic to help others. you see her go by each day, putting out new pamphlets. the pink-tinted, hallmark ones. and you realize that if someone that strong and empathetic likes them, the pamphlets and stuff are probably okay. you don’t get it, but you don’t need to.
you just eat your mulch-flavored grandma cookies and wait it out.
Entering week 3 of radiation treatments. I’m there during a time when a group of oncology students are around.