TW: Graphic photo

Mark is back to his post-surgery antics. Insisting on getting up despite every effort to distract and dissuade him. He’s got a torso restraint as well as mitts and hand restraints. He pulled out an IV line. That wasn’t a big deal. Then he pulled out one of two tubes in his nose, which are there to provide support to the graft. When his nurse saw that he had pulled it out, she closed her eyes and took deep breaths, placed an urgent call to neurosurgery, and started to cry. I told her it was okay and he’s a really hard patient. She told me that she’s never seen a patient on their unit with as many tubes and drains as he has.

Mark is defiant and also out of his mind. During the pre-op appointment with neurosurgery, I told the doctor that I was prepared for Mark to have delirium again. “Oh, without a doubt he will have delirium,: he replied. Yesterday Mark told me he had to get out of bed because it was time to pick up the boys. “Where are they?” I asked. “At Pizza Hut,” he said. “I’ll get them,” I said. “I want to get them,” he said, and continued to try to problem-solve his restraints. When I left, I told Mark to be good. “No,” he replied. “I’m going to be bad. BAAAAD.” You just have to laugh, or you’ll cry. (Also, they have a dedicated 24/7 one-on-one sitter with him now.)

I took a photo of Mark’s neck that provides an ironic lens for what it’s like to be taking care of Mark right now. This was an easy pick, this photo. What is not pictured is this: they incised nearly 3/4 of his head. Take your finger and trace from your throat to your left ear. Then take your finger and trace from below your right ear to where your right ear meets your temple. That is the only part of Mark’ head that they did not cut open. Everything else is sutured and stapled, drains sticking out, a tissue graft covered. He’s speckled with blood spatter. There are tiny blue threads sticking out of one cheek from sutures inside his mouth, where another incision was made. Then there’s the severely bruised right arm where the arterial line was placed. And his PICC line. And his incised thigh.

And he fights, and fights.

No pressure.

Read at your own risk.

All went well and according to plan. Mark was taken back for surgery at 5:00am, the surgery ended at 8pm, and I got to see him in the ICU at 9pm. I stayed for only about 15 minutes (it was past visiting hours). I’ll go back at 9am today.

Mark’s on a ventilator and sedated. They are going to keep him that way for a few days. He’s being monitored in every way possible, including some new things we haven’t experienced before such as an arterial doppler implanted in his neck to track the function of his blood vessels. The nurse and neurosurgery team are also using a hand-held doppler to check the blood vessels in his neck and head regularly. The doppler reminds me of being pregnant and marveling during ultrasounds at the sound of my baby’s heartbeat broadcast into the air, the comforting confirmation of the steady functioning of the hidden life within.

Mark’s face is quite swollen from the trauma of surgery, and in addition to that his forehead is an entirely different shape. It would not be completely inaccurate to say it looks like something Steven Spielberg might come up with. The muscle tissue they took from his thigh is tucked in there. However, imagine that you made an empanada and overstuffed it. The dough can only stretch so far as you try to close it. Mark’s skin, having been cut open so many times there and also having been radiated, doesn’t have the flexibility that would be optimal for this super-not-optimal situation. So they couldn’t fully close it. They took a little skin from his thigh to patch it a bit, and then left some of his incision not closed. It’s packed, and they haven’t decided what to do with that yet. They left his forehead skin intact, which means he still has that open burr hole. “It’ll be bleeding,” the neurosurgeon warned me in the post-op conversation, “but that’s good because it allows an escape point for blood that would otherwise pool.” The new patch of healthy muscle underneath should help the hole heal.

I’ll go back to the beginning. All went fine. I’m okay. One day at a time is reduced to one hour at a time, one minute at a time. His greatest risk is blood clots as the pieced-together blood vessels figure out how to heal. He’s exactly where he needs to be: in the secure world of the ICU.

“Nine and a half hours,” Mark said on the drive home from his pre-op appointments on Wednesday, “that wasn’t so bad.” He had accepted using a wheelchair throughout his day of usual pre-op stuff: CT scan, bloodwork, meeting with anesthesiology and surgeons.

Here’s what I learned from the day: Mark’s surgery will be within a range of 5 and 24 hrs long, according to the anesthesiology PA, neurosurgery resident and neurosurgeon. The neuro resident said the piece of the muscle they’ll take from Mark’s thigh will be “like this,” holding his hands apart about the distance of a nice-sized pepperoni roll. “It will?!” I yelped. “Well,” he moved his hands closer together, “it will shrink down. Watch my hands, they’ll keep getting closer together.” I wasn’t sure if this was like a magician trying to distract you away from the trick, or this guy backpedalling fast so as not to alarm the tired crazy lady. The chance of blood clots after the surgery is in the range of 5-15%, according to the plastic surgeon and the neurosurgeon. “If the blood vessels fail,” the neurosurgery resident said, “The whole thing will die.” “This is a big one,” the neurosurgeon said to Mark, “but it’s got to be done.”

Mark heaved in several waiting rooms, tears running down his face as he tried to hold back from vomiting. I’m sure he was terrifying to the other patients waiting for their tests. Everytime he put pressure into his head by vomiting, the burr hole wound would fill up with some blood-like fluid. An hour later, like a tidal pool, it would receded.

Mark was quiet throughout the day. I had some good conversations. The anesthesiology nurse and his wife were robbed in NYC and now only wear rubber rings with various fun insignias. That was his explanation when I pointed out that he was married to both Jesus and the Steelers which I found kinda Pittsburgh-perfect. After waiting two hours in the neurosurgery waiting room, I approached the front desk. Mark had just said to me,”So you about ready to blow outta here?” I implored them to put him in a room. “If he can just lay down,” I said, “I think he’ll be okay.” They found an empty exam room and brought him a blanket. I turned off the lights so he could sleep. Later, when he’d woken up and we walked to the bathroom, we ran into Lois. Lois is the nurse that sat with us while Mark had his spinal tap months ago. After his ER visit last week, she called me to give me an update about the upcoming surgery. “I’ve been so worried about Mark,” she said. Which is both what you want to hear and don’t want to hear from the lady who’s been working in neurosurgery for her entire career. Lois leaned towards me in the hallway and whispered, “I moved you up” in the appt queue. The blessings of being a frequent flyer are not none. They may only be .001% above none, but they are there, nevertheless.

Last night, I had the hard conversations with Mark. “If you end up on a breathing machine, what do you want?” “Death,” he said. “If you end up paralyzed, what do you want?” “I hadn’t thought about that,” he said. “I can take it,” I said. “We can sit here together. I’ll take care of you, no matter what.” He said he had to think about it.

It wasn’t a bad day. It was a long day. We were both tired. He was unsteady on his feet. I held his hand, and we walked to our bedroom together.

I read and appreciate every text, every comment, every Facebook message, every email, every card. If our situation was a stewpot, we are at the place where the ladle can’t get one more full serving. We are scraping the bottom. I am both okay and not. I am calm and frenzied. I am sure of our path and actively pounding my internal brakes against it. I have stark facts I understand and complete uncertainty in most areas. I need, we need, a lot right now. I can put my finger on none of it.

This is what I know. Mark’s surgery will be Thursday at 7am. I keep checking and rechecking my math, but one stark fact is this: his surgery should be completed between10pm – 12am. Every two hours, I will be allowed to ask for an update. The update will be: everything is going according to plan. Unless something is wrong. Then I will get called in to talk to the surgeons in between the two hour vacuous check-ins. I will want to leave the hospital during the day, to get sun on my face and take a walk. I will be afraid that by doing that, I’ll miss some critical update from a surgeon. I will become very still and very isolated. It will feel like when I gave birth to each of my kids. I closed my eyes, went deep inside my brain, and rode the waves of contractions for hours.

If I was a pinball, I’d be entering the ramp down to the flipper. I’d have bounced and bounced and bounced against bumpers, racking up points in an unknowable game. Sliding down the chute, the strange hope is that I’ll get that solid thwack. To not get it is to lose it all.

I am not a metal pinball. I am flesh and consciousness. No matter the outcome, this is going to hurt.