Sebaj died from metastasized colorectal cancer on November 20th, 2023 at 10 a.m.
The 4th Hour
Right now, you are dozing. The T.V. that belongs to bed A is rattling off gory news about the war in Israel. “Horrible,” I think to myself. But I’m only thinking it, I’m not actually feeling anything. It doesn’t matter to me. My eyes are on you, my worry and my sorrow, all you. Slowly and inescapably, I watch the clock tick away the Dilaudid. I will have to watch for signs soon.
Your eyebrows always tell me first. The overgrown, white bushy whisps are more prominent than ever, now that your temples have sunken in. Like a watch dog, I am fixated on what your face is telling me.
When you raise your brows, you look like you are asking yourself an interesting question, wherever you are in your morphine-laden dreams. Maybe you are fixing a bicycle again. I have to smile. All your hallucinations seem to involve bikes. Your happy place.
I can see it starting now, the eyebrows are beginning to furrow, the crease between them deepening. Sometimes this lasts just a few seconds, and you sleep through the flash of pain.
“A six,” I think. My heart rate ticks up. I should start checking with the nurse to see where you are in her evening queue. Timing is everything.
Your legs are trying to twitch. Insofar as you can twitch your legs at this point. It’s more like they are moving slightly, pointing to something you want to do but cannot. There’s not enough muscle left for you to command, and the constant fatigue is doing the rest. I see the pain building up now, travelling down the length of the sciatic nerve into your right leg. You are rubbing your arms with your hands to self soothe. Your subconscious is starting to work your bag of tricks. Years of toughness have taught your brain what to do.
Your eyes open: “What time is it?” you whisper on the exhale.
“Another 45 minutes,” I say, because I know what you’re asking anyway. We’ve been here many times before, it’s Groundhog Day every four hours. Every day. Every week. Not sure what week we’re in exactly, but it did get cold out and the leaves fell. It must be at least six weeks by now, I think to myself. I’m not sure. It’s hard to think about those things. Extreme stress gives you tunnel vision. I read that somewhere.
But now I have to focus.
I grab the heating pads and dash out the door. I dash on the inside anyway, because I’ve learned that my rapid movements increase your anxiety and that dials up the pain. So I try to walk leisurely until I get to the door, then gun for the microwave down the hall. If I put one heating pad on for 90 seconds, I can bring that one back while the other one cooks. That’s the most efficient and I need to be efficient. We are probably already at an 8 with the pain.
I say “we” as if this were my pain, too. I should deny myself that, it is your pain, I am not the one hurting. I am the one trying to fix this. You are in the one in a bad place, you are the one who got sick. I shoo my feelings back into their straight jacket and look for my happy face.
I place the pads next to your stomach and lightly on your back – I know where they go. I move gently because I don’t want to burn your skin or add unnecessary pressure anywhere. You can push them away or point to where you need them. I don’t want you to have to have to speak, and you don’t want to have to ask.
Your blanket has rolled itself into a lump and your legs feel cold. You are often cold now, but you don’t want weight on your skin. It hurts. That’s why I bring the little red comforter from home every time we come here. It’s lighter but fluffier than the blankets from here and easier for you to move. It warms you up fast. I lightly drape it over your lower half.
I rearrange your pillows in a futile effort to make something better. I lower the overhead lights to reduce stimulation, turn on the T.V., looking for something funny or an action film. Not more stuff on the war in Israel. I want to ask you what you want to watch. You like to be the one deciding. But we’re sort of past that, aren’t we? It’s not like you’ll make fun of my choice at this point. It just has to do the job.
And the job is simple. If it gets the pain down just one point, this is good. Every little bit helps. Because, I’ve learned, that is how pain works. Almost never does it go away, it’s really just waves in a large and ever swaying ocean. Bigger waves, smaller ones. Small waves are 3s, 4s, 5s. We ignore those at this point because they are constant anyway. They just grind you down, affect your will power. We have resigned ourselves to those.
But then there are the gigantic waves, the 10s, the ones we have to try to bring down in bits and pieces with distractions as we ride out the hour of the Dilaudid low. And what we really want to avoid are what I call the “athlete’s 10s,” the 12s of any normal human being, where people like us just jump out the window and call it a day.
“35 minutes” I tell you. Time for me to get the nurse ready to fire the meds on time. This takes at least 10 minutes, because the opioids are under lock and key so nobody can give more than what’s prescribed, or earlier than prescribed. Not even by a minute. This is a real problem when you need more, or when the prescription didn’t come through yet, or when the nurse hasn’t finished studying your long file at the start of her shift.
Once she has the meds, the nurse then has to document that she has filled the order in her file. For all this to happen on time, she has to be done with the previous patient 15 minutes before.
That leaves 20 minutes for me right now. But I have double duty. Check on you, check on her, report back to you to let you know how much longer. Check on you, check on her, report back. You can’t lose hope and you need to know how long to keep up the deep breathing. My obsession with repetition as a way of coping with stress is at an all-time high. And I am letting it fly loose, at my own peril.
I try to keep the voice down that repeats itself in the back of my head. It says: “this is your twilight.” I am so scared I have to slow my own breathing to stay focused. In for count of four, hold four, out four, hold four. “Please let this not be for nothing,” I whisper. As if someone’s listening, but I know we are alone here.
The nurse is still taking notes on the patient next door, and I go out to talk to her about you. This is when I can create the emotional grip. To get her to care for you more than the person next door. This is when tell her about who you and your cancer and your pain - you hate it so much when I talk about you like this but I don’t listen to you. I was always going to ask for forgiveness later, I really was. But now I listen to your pain like it is my only master. And your pain is a powerful motivator. More powerful than my judgment that it is wrong to try to get you ahead in the queue. All the nurses are overworked, and tonight their sickest patient might be the person next door. I take note of the fact that I really don’t care. To ask myself at a later point if I will then agree with myself now. Or if the compulsion to ease your pain has gotten the better of my moral compass.
Tonight, though, I might be in luck. The nurse is compassionate and understanding, interested in hearing about your athletic prowess, and how I saw it vanish in front of my eyes in a matter of weeks. The Dilaudid will come on time. Good.
“10 more minutes,” I report back to you. But you are not in a good place, you want to move to escape the pain. You used to get on your knees and elbows and rock, that helped a little. I propped you up and held your hips in place when your muscles started giving out. And I would ease the fall when you collapsed. Tried to rearrange your limbs back into place.
Now you can no longer work with me and I have to think about what else I might try. I go for the massage, rubbing the sciatic nerve from the leg up into the hip flexors. Though I generally think I am competent at this, I know it really doesn’t work for you, I go too deep and too hard. But you have asked me a few times to just try something, because you might be too tired to ask or too weak to think. If you don’t like what I try you will just push me away. So I am trying something.
The second hand of the clock above the door ticks away and the nurse is running late. “Shit.” I hope you don’t sense my anxiety in addition to yours. If animals can smell it, then humans can too. “I’ll go check again,” I say.
I go, begging, “please come quickly, you don’t know what it’s like. He would cry if he could, he would scream if that were his thing but the athlete in him will not let him do this, not even now. Plus he’s just too tired, too worn out, too resigned. Please.”
You want to end it, I know it already. And I am against it. I just want a little bit more time with you.
And I want a win, even if it’s just for now!
“Five minutes behind.” But not more than that. I am sure. Remember when you used to set the timer on your phone and admonish the nurse when she was late? That was in the early days, when you were more your bristly self and could fend alone for a few hours. Now it’s just me here, I think. Between your brain, your needs, and the outside world. It’s the place of promise I put myself into, never to leave you alone in your suffering, and always knowing what you need when you can’t say.
Five minutes late is not really bad, it’s been 30-60 minutes before, that’s been hard. One night it took 4 hours because the script wasn’t there, and the docs had gone home, the backup docs were trying to save some dying person in the ER, the new nurse thought you might just be an addict. Now that it’s late in your game, they don’t do that anymore. You often get prioritized, but I know what that means too, and I don’t like where that thought leads.
The shot comes 10 minutes late. I tell you that this is a win. I don’t think you care about a win, though, you just want relief. The oral meds, the ones we have to take at home where there’s no IV, those are the real problem, they take 60 minutes or more to catch up to the pain, and if the pain is too strong at that point it will take hours more. Hours of darkness for you, hours of fear for me.
But tonight, we are here at least, where the IV is. We are here to treat the pain, not the disease. In the beginning, I didn’t know that that was the real disease, the real enemy. I get it now.
You are wide awake as the nurse comes in. You muster the rest of your strength and make a kind remark. You are trying to be grateful. But you follow her every move with your eyes, which say, “please hurry.” She pushes the IV. A couple of minutes, and all the muscles in your face relax. It’s better.
We chat a tiny bit, then you get tired again and doze off. I want to talk more, ask you things, tell you things. But I let you sleep. You deserve it, you worked hard. The point of serious conversation between us is anyway in the past. Whatever I can tell you now will only add to your burden. When you open your eyes and look at me, I give you an encouraging smile and pitter patter about something unimportant. Deep thoughts are painful now, and we have enough of that going for us already.
It is dark out now. My co-pilot arrives from work to take over the night shift. Because it takes two navigators to guard your hurt if one wants a win. And I feel safer knowing someone shares my obsession and my grief.
My co-pilot sets her timer for the meds, just in case. But like me, she never really sleeps when she is with you. Her eyes interlock with yours, you are pleased she’s here. And that is where her eyes will stay for the night, just like mine, looking for signs of pain, trying not to miss anything.
Tomorrow at 8 a.m. it’s back to battle stations for me. I will come replenished to get through the day for however many more there are. But any day other than the day I am in is far in the future for me now. I’m too focused on the 4th hour.
And you? You are without respite until you take your last breath. We both know that already. We just pretend otherwise. Until its lights out for you and I go into free fall.