Dumb Hard

Yesterday was dumb hard. It was ridiculous. The case manager called to tell me the treatment team’s assessment of Mark. Contact-level assistance for tasks of daily living: standing from a sitting position, walking, toileting, bathing. He “often” is oriented. He “often” can remember things. Does he have a transport chair? A walker? A bedside commode? Safety bars for the toilet? A shower chair? Do I work outside the home? How many stairs are in the home? Are there kids at home? He’ll need someone with him full time to make sure he is safe.

Yes we have it all. Yes, I’ve done this before. Yes, it’s still intimidating. His target date for discharge is August 29. I have eight days to get ready. I mean, I am ready. Am I ready?

The case manager casually ended the call by saying, “And I’m sure the nurse called you to say that he pulled out his trach.” “WHAT?” I said. “Oh, they should have called you,” she said. “It’s okay, they checked his oxygen levels and he’s at 100%, so they decided he doesn’t need it.” “THAT’S NOT WHY HE HAS A TRACH,” the tension raising my voice another notch. “Did they call his surgeon to see if it’s okay? It’s there to keep pressure off his skull base, not to give him oxygen.” She said she’d check and call me back. I called the surgeon’s office. I called the rehab’s nurse manager. I got into my car and drove over to the rehab, even though I know I’m not allowed in. I needed to see someone and to see him, even through a window.

When I got there, I went Mark’s room window. He wasn’t in there. I went into the lobby and asked to speak to the case manager and the nurse manager. When they came out I explained, again, the purpose of the trach. They were reaching out to Mark’s ENT surgeon. They assured me they were on it.

I went back to Mark’s window. He was sitting in bed. I pointed to my phone and called his room phone. He picked up his phone and waited patiently. He didn’t know how to use it. I hung up and called the nurses station to ask them to send someone down to help him. Once we connected, I made the usual small talk. It’s become very small, because his world is small, his memory and cognition is variable, and his hearing is poor. Finally, I said, “I heard you took out your trach.” I could see through the window a patch of gauze covering the hole. “Why did you do that?” “What?” he said. I spoke slower and louder. “THE THING IN YOUR NECK,” I said. “Oh,” he said, “the triangle in my neck? It was bothering me.” I explained to him, again, why it’s there and why we have to wait for the doctor to decide when it can be removed. We talked for a few more minutes before I drove home.

When I got home, the ENT surgeon’s office called to say that Mark had to have the trach replaced, today. They didn’t have any clinic appointments, so he would need to go to the ER. The case manager called shortly after to say they were working to arrange transport. “It has to be today,” I said. “It has to be soon. If you’re waiting to free up a transport van, I don’t think that will work.” She hung up to work on it and called me back to say they were calling 911 for him to go by ambulance. I hopped in the car and headed back to Presby Hospital. When I got there, the valet attendant said, “I thought you had gone. You were here everyday and I didn’t see you the last couple days.” I told her what was happening. “You’re going through it,” she said, shaking her head. In the ER, I went through security and sat down to wait for Mark to arrive. My phone rang. It was the rehab doctor calling to say that they had been able to place a different trach in Mark’s neck, and that the ENT’s office said that was acceptable. I headed back home.

Late in the afternoon, a director of something or other from the rehab called me. She had received a formal complaint, which I did not lodge but one of the rehab staff people did on my behalf. Had I talked to their doctor and case worker? Did I have any other questions? “Well yes, actually, I have a question about the trach they placed.” “Oh,” she stopped me, “I can’t answer any of those questions.” Okay. “I just want to make sure you know that you can call and tell us information about your husband if that will help us take care of him.” My tired blood started to consider boiling. I understood that her call was to placate the family. But this sounded like blaming. “You’re actually now making me more agitated. I know how to advocate for my husband, and I have no problem doing it. If you have questions about his care, you either have to call me or call his doctor. I can’t know what you do not understand about taking care of him.”

Grrrrr.

Mark called me last night. He was tired and bored. He couldn’t remember what he had had for dinner. He promised that he understood he needed to leave the trach in, and why.

This morning, the nurse manager called and told me he had taken it out again.

Dumb hard. Ridiculous.

Companionship

Mark was transferred to a rehab on Tuesday. It might have been Monday. It was definitely not yesterday. I am tired. We’re heading for three weeks of him being in some medical setting. We will likely make it to four. Over the past four days, I’ve gotten Michael and Ben off to college, my Alma has returned to Massachusetts, and I discovered that Ben’s rabbit was very sick and had to put it down. It’s just Matthew and me now, a house that was a whirlwind wound down to a whisper.

Mark has no inanimate objects attached to him anymore, other than the trach. The stuffing was removed from his nose; he can breathe through it for the first time in 18 months. The trach is now opened up so some air can go up while the rest goes down. The air going down fills his lungs; the air going up passes his vocal chords and allows him to speak quietly. Limiting the air heading north keeps pressure off the graft as it heals.

Mark is only allowed Covid-style outside visitors. Go to the window labelled Room 120, hope he’s there and not in therapy, and wave. Call him on the phone, hope he answers, and talk to him while looking at him. Hope he knows how to use the phone. The first night he was there, my phone rang. I recognized the caller ID as his direct room number. I answered. Mark? Mark? Can you hear me? There was only breathing, and the quiet murmur of a TV in the background. I hung up. The phone number called me again. Breathing sounds. No voice. I hung up and called the nurse’s station. They assured me that Mark was fine. This cycle repeated a few more times. “I am getting anxious and need to hear for myself that Mark can talk. He should be able to talk.”

One of the many problems Covid poses when you have a loved one in a facility is the limit of either one dedicated support person or in this case, none, being allowed to visit. I know Mark. I know his baseline. I know all his baselines. I know how he looks, thinks, breathes, acts, sleeps when he’s fine. And when he has air in his brain. And when he’s had a seizure. Maybe it’s a one-size-fits-all for these things. But I don’t know that every caregiver in every setting will catch the little things that are clues that he needs immediate help. My brother Dale knows the staff at the rehab, and texted me some intel last night. “He looks better in person than on paper,” I was told. This is wonderful. It’s also my constant fear. Mark fakes things so, so well. No pain, no fears, no anxiety, no memory problems. Consistently when he was at the hospital, if I asked him what he had had for a meal and he could not remember, he’d casually say, “Oh, you know, the usual.”

I know folks who work with the brain know to watch out for these slights-of-hand from people like Mark. I am just anxious. He weighs 123 lbs. His head has been through a lot. I’ve been through a lot.

The nurse went into Mark’s room and put him on the phone with me. “Mark, can you hear me?” Forced air sound. “Mark, is the nurse in there with you?” Forced air sound. “Put her on the phone.” The nurse finally figured out that using a landline, Mark was holding the bottom of the phone too close to his trach. All I was getting was trach exhales. She showed him how to hold it higher, and there was his voice, a little wobbly but there. Whew.

On Tuesday night, or maybe Wednesday, I was determined to get out and take a walk. It’s been weeks since I’ve exercised. I donned my baseball cap and headed around the block. Three houses down, the elderly Nepali woman with her gorgeous colorful textiles was standing on her back patio. I waved, she waved back. Then she turned her palm inward and summoned. This was new. I’ve walked with her around the block a couple times. I haven’t approached her house. I walked through her yard to the back. She was sitting in the shade with her daughter. They motioned for me to sit down. Grandmother speaks no English. Her daughter spoke some, more than she would give herself credit for. We weaved our way through a nice-to-meet-you conversation. Dhan, the Grandmother, Hari, her daughter and their family have lived in Pittsburgh for nine years. They like to grow vegetables and cook. Grandmother likes to walk and talk to people. With the virus, they can’t visit with neighbors as much. They hope for that to change. I visited for a half hour, then walked back home.

The next morning, I went out determined to take a longer walk. As I crested the hill, there was Dhan out for her morning walk. We walked towards each other, and when we met Dhan turned around to walk with me. She chatted away about things unknown to me. Sometimes it grew quiet. I’d point out flowers or the sky. She’d nod and tell me a story. When we reach her house, we waved goodbye. My new friend who I don’t understand, and it doesn’t seem to matter. We can be companionable. It’s really all we need.

On Day 7 of Mark being in the hospital, I visited for 5 hours and then told him I needed to go. “Already?” he said sadly. I counted in my head. “Mark, I’ve been here 60 hours in the past week.” He looked surprised. We didn’t know then that the next day he’d have another surgery. I logged another 11 hours.

We all crave companionship. If Covid has taught me anything, it’s that even the introverts have a breaking point where they need connection. Ideally, it’s with people you feel close to, laugh with, share with, grow old with. Friends, family, neighbors, colleagues. The adjustments we are making to try to keep our human connections are sometimes outlandish, sometimes dystopian. They are a beautiful testament to our adaptability, our creativity, our stubbornness and persistence to meet our basic human needs.

Maybe I’ll go watch Mark through his window. Maybe I’ll wait for him to come home and sit next to me where we can read the paper quietly together. Watch the dogs play. Talk about how the tomatoes are doing.

I am anxious for when he comes home. Will he need a walker again? Will he remember to take his medicine? Will he try to drive? Will I have to follow him room-to-room again, as I did for many months last year?

Regardless, we will be together then. He will be home. And that is what will matter most.

Progress

Mark is out of the ICU. Restraints are all off, drains are removed. The only gizmo he still has attached to him is the O2 for the trach. It’s a long tube that attaches to a tank on the wall and sends humidified air into him, protecting his graft. He rarely will admit to having any pain, and just as rarely will ask for help before trying to do things himself. I asked him why he took his hospital bracelet off. “Because it’s an inanimate object,” he said. So there you have it. I’m hopeful he’ll be discharged soon. Next stop: rehab hospital. His little bird legs need to get stronger before he’s safe to come home. One step at a time….

The Lightning Bolt and the Rainbow

Mark’s back in the NICU.

Tuesday morning when I came in, Mark was way below baseline. He was lethargic and blinked quietly when asked questions. I watched him. “His eyelids are doing this slight flutter,” I told the nurse. She watched him for a few minutes. “I’ll page the doctor,” she said. He had just come back from a CT scan, and within a few minutes a couple breathless residents came in after racing up the stairs. More air in the brain. Not sure from where. Time for a new plan.

The plan, which developed quickly, was to take him back to the OR for a temporary fix to buy some time to get him to the “nuclear option” surgery that could be scheduled for Thursday. This was told to me by the chief resident of neurosurgery, who the first time I met him told me that he was the chief resident of neurosurgery about every other sentence. I think he’d prefer if I called him the Chief Resident of Neurosurgery. “I’m surprised he left you any air to breathe,” said the well-seasoned nurse afterwards.

The Chief Resident of Neurosurgery sat on the edge of Mark’s bed to talk to me. The temporary fix would start with a tracheostomy, to close off the possibility of more air getting into Mark’s brain through his mouth or nose. Then, they planned to remove his tissue graft and place a temporary synthetic graft. They’d go through the nose and if that didn’t work, reopen Mark’s head. The Chief Resident of Neurosurgery looked at me solemnly. Did I have any questions? “You’ll tell me when this is too much, right? I want you to be clear and direct with me.” “I will,” he said. “This is fixable. It’s a difficult spot, and it’s a setback, but it’s fixable. “This is the part where I’ll cry,” I said. “Will Mark be able to return to the quality of life he had before the surgery?” “Mark has no damage to his brain,” he said. “What about the pathology?” I asked. He went into the hallway and returned with a computer cart. He brought up a document. Pathology from the surgery last week. I hadn’t seen it yet. He scrolled through tissue samples. No evidence of disease. No evidence of disease. No evidence of disease. We could keep having this conversation.

The nuclear option would be replacing the graft with a “flap,” a 15 hour surgery in which they’d relocate a piece of muscle with a healthy blood supply from Mark’s body to his head. Surgeons would stitch every little blood vessel from the muscle to blood vessels in Mark’s head.

“What’s the other option?” my friend Hilary said when I told her. “Nothing,” I said. If the existing graft fails, this is the only option.

Back I went to the family waiting room. Which was a scene this time. All was quiet as per social distancing and masks and being the solo support person for our loved ones. Then I spotted a woman talking to someone with the kind of intimacy that showed they were clearly together. They had their feet up, a blanket, and were clearly settled in for a long wait. “Hey!” I called across the room, “Did the two of you get in here together? How did you do that?” “Girl,” the woman said, “it took a lot. Are you here by yourself? Come on over and join us. We all need community right now.” And so, I did. She was there with her daughter. Her son had been shot. This was his third surgery. “It’s my husband’s third surgery, too,” I said. In the trenches, finding anything in common is a comfort. Even this. “Honey, you have no idea how many people I had to talk to to keep my daughter with me.” Then she told me a long and harrowing story that involved family conflicts and police and, obviously, a violent turn. “We need to petition God together. This virus is keeping us apart when we need to be together. Come here,” she said, “take my hand.” Just like that, the boundaries I know to keep because of Covid fell. I did. Her daughter, cell phone scrolling in one hand, grabbed her mom’s foot with the other. “Lord Jesus, be with…” she trailed off. “Mark,” I said. “…Mark and his bride…” She had more names for God and Jesus than I knew. She said basically one thing over and over. The thing the writer Anne Lamott says: Help. Thanks. Wow. This woman, Praying Woman, had her eyes closed and she did not notice as a woman in her mid 30’s walked up to us, eyes red, a handful of bills clutched in her fist. “I don’t mean to interrupt,” said the new woman. Praying Woman opened her eyes. “But you are,” she said sharply. “You can join us in praying, or you can wait.” I recognized in her a woman who has had to fight a lot. Tense, ready, fearless. “I’m sorry,” the New Woman stammered. “I think she has something to give you,” I whispered to Praying Woman, nodding at the money. “What? What are you doing?” Praying Woman said in confusion. New Woman clearly didn’t know if she’d had done the wrong thing. She blurted out, “I’ve been waiting for my husband to get out of surgery and I’ve heard what you are going through, and I wanted to give you something so you and your daughter could maybe get a snack….I have to go because they said I could go see my husband now.” Praying Woman immediately shifted gears. “No, you are going to take a minute and pray with us. We need each other. Come on in here. What’s your husband’s name? Now, what’s going on with him?” New Woman started to sob. “He started having seizures when I was pregnant with our second child. He just had a stroke. He’s 36. They just removed half his brain.” We grabbed her hands. Praying Woman vigorously prayed for this woman and her husband. She accepted the money. She got up and hugged her. I hugged her. She left to go see her husband.

Praying Woman handed me the money and asked me to buy us all Reese’s cups. We ate them together. Praying Woman said, “We should have gotten her phone number. I’m going to get your phone number. I’m going to check on you.” Then they called me. Mark was ready to be seen in the ICU.

Love in the time of Covid. Waiting rooms in the time of Covid. The stress, the agony, the humanity, the beauty. Emptying and filling. Crying and laughing. It’s like a lightning bolt and a rainbow, over and over again.

The surgery went fine. His trach was placed, and they decided that the air could have been getting into his brain through a split they found in his exterior ventricular drain. “Why would it break?” I asked the surgeon. “You know, things break,” he said.

The good news is that they put on pause the plan for the big surgery. They are monitoring Mark to see if any more air gets into his brain. It’s watching and waiting. We are good at that now. We can do this.

Of all the things that Mark has gone through, the trach ranks up there as my least favorite. He lost his voice, and I try to read his lips. He coughs and the sound comes out of his neck instead of his mouth. I watch as a tube gets pushed down his neck to suction out secretions. This morning, speech came and checked to see if he could take food and medicines orally. This was necessary because he pulled his feeding tube out last night after again working his way out of his restraints. The speech therapist gave Mark sips of water and pudding dyed blue, and then asked him to cough. If blue mucous shot out of his trach, then we’d know that he had aspirated. It didn’t. He can eat a soft diet.

The man is still in there, though. He’s still funny. The other day, before this recent surgery, I gave him a cup of coffee and warned him it was hot. “Piddly puffle,” he responded. “Umm, what?” I said, “I’ve never heard that.” “Just trying to keep you on your toes,” he replied.

“Be good,” I said before I left today. “I am good,” he said.

That’s my guy. He’s a handful.

Medical Update

Yesterday, I watched Mark eating his lunch and thought: He looks like a combination of Medusa and the Mayhem guy from the Allstate commercials. An hour later, he asked, “Do I look the same?” He probably feels like they laid him flat on his back in the OR, and then beat him with a stick. “You do,” I said. “Do you want to see a picture?” He nodded. He smiled as I took a picture. Then I showed it to him. “Looks mostly like me,” he said. It does. It’s Mark, and Medusa, and the Mayhem guy. He has approximately 55 staples holding his head together, 55 little silver steps climbing over the dome of his head from ear to ear. He has gauze covering most of this incision, except one piece got loose and is dangling over his right ear like a lock of white hair. His nose is stuff and stinted, with surgical string rip cords, as Alma’s boyfriend Adam referred to them, taped to the top of his nose. Instead of snakes like Medusa, he has tubing for three drains coming out of his head. Two come from the incision and are dangling down to his chest, where the drain bulbs are pinned to his gown. The third drain runs directly from his brain into a bag that slowly and continuously fills with cerebral spinal fluid. I watch it drip, drip, drip the colorless liquid all day long. He has a drain for his right thigh, where they took the tissue for the graft in the first surgery. He has a drain on his stomach, where they took belly fat in the second surgery to patch up the graft. He has compression socks humming as they fill over and over. He has wires attached all over for monitoring his vitals. His forehead has a pronounced pulse right in the center, where they removed and then reset the bone. His eyelids are a little swollen and are shiny from the ointment they put on several times a day.

So, mostly like himself.

A quick recap of what’s happening. Here’s the layering we have in our heads, outside-in: skin, muscle, bone, lining of the brain (dura), brain. Mark’s cancer messed with the dura and compromised it. The radiation then further messed with the dura, because any potential cancer cells had to be zapped there. So he had a lot of dead (hopefully all dead, since living tissue there could contain cancer cells) dura. There was also the lesion detected in recent MRI after he went to the ER for a spate of seizures. Lesions are dead cells. Dead dura is a potential site for infection. There was also the hole created by the cancer that was capped with a piece of plastic, the prosthetic. The plastic, too, was a potential site for infection. These are all the reasons for the surgery. Oh, and that he could not breathe through his nose at all, because of scarring from radiation. The surgery’s goal was clean out scar tissue so he could breathe again, remove the plastic piece, remove the dead dura, and replace the dead dura with live tissue from Mark.

We are in a waiting period to see how he heals. We are also waiting on pathology of the removed tissue.

At the earliest, the drains will be removed on Tuesday. The stints in his nose could be removed Monday or Tuesday. Then we watch and wait to see if the graft “takes.” On Tuesday, the graft failed in one spot. A nurse noticed Mark’s word retrieval had declined over a few hours, and that he was tired, and that he couldn’t hold up his right arm and leg as long as he could hold up the left side. A CT scan showed a pocket of air in the brain. Somehow, the spinal fluid drained and the air came in. They whisked him off to emergency surgery. The nurse who caught the problem hugged me as I sobbed. The anesthesiologist called me from the OR to get my consent, and he put the phone on speaker so that Mark could hear me say calming words before the surgery. I went back to the surgical waiting room to wait out the night. When they were finished, the ENT surgeon and neurosurgeon told me they had they taken some fat from his stomach to create another layer over the graft. They needed a good seal. It’s a tricky spot to work on, they said. It’s day to day.

The graft “taking” means that it needs to not have any gaps. It also means that the graft needs to vascularize, because what Mark needs is living tissue there keeping the brain safe and sound. We will know if it works only by clues that it’s not working. That could be confusion, lethargy, lack of symmetry in muscle coordination, uneven pupil dilation. He may be home while we watch for all this. It depends on how things go. The current plan is that he will move from the hospital to a rehab. He’s been in bed for six days, and it’s been enough that he is very unsteady on his feet. He needs to build up those walking skills again before he’s safe to come home.

Yesterday, Mark was ornery. When the nurse asked him if he could please hold up the wires and his gown so she could give him a heparin shot in his belly, he said, “I could, but I’m not going to.” Then he muttered, “Just kidding.” When he wanted to sit up higher in the bed, I told him we needed to wait for the nurse. He’s not allowed to reposition himself at all, because the height for the spinal fluid drain has to be specifically situated using a laser to the right location on his head. They are constantly monitoring his intracranial pressure, and they are very serious about it. If he breaks the rules and sits up, or leans over, his brain could hemorrhage. This is one of the reasons he’s restrained unless someone is in there watching him. When he’s ornery, he’s not impressed by this. “It’s not going to happen,” he says confidently. I explained it to him again, and again. He was quiet for a while. “What are you thinking about?” I said. “Your paranoia,” he said.

Yesterday before I left to go home, I told Mark to rest and listen to the doctors and nurses. “Eh,” he said, shrugging. “Mark, it’s important that you listen to them. They know how to take care of what’s going on inside of you,” I said calmly. “Sounds like I’d have to give up a lot of authority,” he said. “Yes,” I replied, “Can you do that?” “Eh,” he said, “I don’t know.”

Sigh.

Today, whatever shifts these moods around had shifted. The nurse asked if he could sit up in the chair for twenty minutes, because the doctors do not want him in bed all the time. “Sure,” he said pleasantly, “Why not?” Last night, he asked for the nurse to bring him a phone so that he could call me to tell me he loves me and to thank me for coming to visit all these days. I brought him his readers, the New York Times, and the first big tomato from the garden today. “Thank you thank you thank you,” he said. “It’s the little things that make a big difference.”

As I was leaving today, the nurse told me that this morning they had been trying to do something with Mark and he said it could wait until I arrived. “My wife is my personal nurse,” he said.

That. And then some.

“Be good,” he said as I left today. “You too, honey,” I replied, “I’ll see you tomorrow.”

Hands

Stop me if I’ve told you this one already. When I was young, a late teen perhaps, my grandfather in Illinois was hospitalized. I don’t remember the details, other than driving out there with my parents to visit him. I didn’t know this grandpa well. He was my Farmer Grandpa, and I had been raised in Philly near my Urban Grandpa. Farmer Grandpa had ears that never stopped growing, ancient overalls for everyday and clean overalls for going to town, and big milk bottles for me to feed the calves. Urban Grandpa told me to go play in traffic when I was annoying him, with just the right twinkle in his eye to instantly take the edge off that statement. Farmer Grandpa wrote letters to the local paper telling them everything that was wrong with our godless country. When he died and we went to clean out the many-gabled house that he built by hand, the reams of paper that we scooped from the floors to the burn pile popped with bullets firing. Urban grandpa recited poetry and scripture, didn’t drive, and always wished he had gone to college.

I remember little of Farmer Grandpa, except one thing from that trip to the hospital: him rubbing his weathered hands together and saying quietly, “You can use them, but you can’t use them.” I did not see him alive again.

Not long after that, in a National Geographic, I clipped a photo of the weathered hands of an old farmer. I kept that photo for many, many years. It reminded me of hard work, and persistence. The tenuousness of it all. The beauty in the fissures.

In my teens, I struggled. I struggled with purpose and worth. I struggled with belonging and love. My parents, in tandem to my suffering, suffered. They fought for me, and they loved me, and they did what my parents do best: found the positives and endlessly hauled them to the surface, reminding us all of life’s gifts. On the refrigerator in their kitchen, for years, hung a simple sign that stated: “Joy in Suffering.”

I’ve thought of that sign for years. It’s meant different things to me at different times. Sometimes, it seemed to channel directly from the Old Testament God: a mandate, and a dare. Endure this! Show me you can! At other times, it has felt like a gentle reminder: There’s something in the cracks here, some grace and beauty to find. It whispered, Find it.

Yesterday, Mark’s hands looked like this:

In his sedated state, he worked those mitts and restraints, his engineer brain alive and functioning in there. He fought to go nowhere other than not here. Not this.

Today, his hands looked like this: 

When we unclipped Marks’s wrist restraints, his hand could pick up a cup of coffee. Use a fork to eat a brownie. Hold mine, squeezing gently to say “I’m here, are you?” 

At lunch, I went outside to let my face be in the sun and to take off my mask. I lay in the grass, and stared up at this sky.

I ate my lunch and watched the mockingbirds watch me. I watched the higher altitude clouds move east while the lower altitude clouds moved west. I wondered about mockingbirds, and clouds. I closed my eyes. I breathed in the air.

Every day, there is a lot of struggle. 

Everyday, there is a lot of joy. 

My hands can do a lot of things. They can pack goldfish crackers for my mid-day hospital snack. They can drive me to see Mark. They can pour him water and adjust his blanket. They can drive me home and help the boys have a somewhat normal night. Soon, I will use them to call Mark’s nurse and see how his night’s been. They will help me get to sleep and help me be ready for another day.

There is a lot of suffering, and there is a lot of joy. I can find it. No matter what, I can always find it. Thank God.

I’ll write more next time…

… but for now I can say that Mark has had a hard couple days. His surgery on Monday lasted almost 13 hours. They did what they intended to do. By Tuesday at 4pm, they determined that he was getting air that did not belong there into his brain. The ENT and neurosurgeon opened him back up last night to fix the problem, which was a gap in the graft that allowed air in.

Mark’s currently in the neuro ICU, vented, on 100% O2. In the surgery, the docs used some belly fat (I know, where did he even have that?!) to seal up the leak. The O2 is to allow his brain tissue to reabsorb the excess air in the cranium. He is sedated.  I walked into the ICU, saw the drip, and thought, “isn’t that what killed Michael Jackson?” Because it looked like milk, and I remembered that being something MJ asked for, his milk. I looked up the med and yes, indeed, it is. Which I don’t mind, persay. Mark needs to rest, in a regulated environment. 

Today, the nurses reduced Mark’s sedation to check on him every two hours. When he’s not asleep, he spends his time with his eyes closed, not quite conscious, working to figure out the restraints and mitts. He hates the vent, hates being in bed, hates the restraints. I hate watching him move so slowly, sloth-like, trying in his semi-consciousness to problem-solve his restrictions. He is at risk for infection, at risk for spinal fluid leaks, at risk for the graft not taking. He needs to stay in bed, he needs to not fuss with the equipment, he needs to be still. He does not understand that. He just wants out.

We are in a bad way. 

He’s fighting.

I’m trying my best. 

Time Bomb

You know what’s hard? Trying to talk to your husband before his upcoming surgery about his mortality. On Monday, we have to leave the house at 4:20am to be there by 5:00am for the surgery that starts at 7:10am. With Covid, I assume that I will literally kiss him goodbye at 5am and then not see him until he’s in the Neuro ICU ten hours later. I booked a hotel room across the street for the day, because I know I will be exhausted and stressed and, with Covid making every waiting room an isolation unit, I know I will be going out of my mind sitting alone in a hospital, killing time.

Tonight, I said to Mark, “Tomorrow, before Michael goes to work in the afternoon, and then before Ben and Matthew go to bed, you’ll want to say goodbye to them for now, because they won’t see you until after the surgery.” This is a partial truth of the situation. The truth is, Mark may go from inpatient to a rehab hospital and be gone for a long time. Or, he may come home within the week after the surgery, but he may not be able to comprehend much or interact with them. After his surgery last August, Mark lost most of the year. He does not remember most of August – December 2019. He’s pretty patchy on January – May 2020 So this is at best an indefinite goodbye. Being the kind of surgery it is, I can’t rule out that it’s goodbye-goodbye. We just don’t know.

It’s not fun to feel responsible for both the person who is having major medical problems and their kids. For Mark, I don’t want him to worry. For his kids, I want to make sure they have a good, meaningful interaction with their dad tomorrow. In case.

“When Kristen was dying, she knew it for a long time, right?” I said tonight. “Yes,” he said. Kristen had fought a long fight with ovarian cancer. She did it all until she didn’t have the energy to do any more. She made quilts for each of the boys for their high school graduations. She wrote them each a letter to go with it. She had a lot of time to think about not being there. She did not shy away from it. She prepared. She must have been utterly crushed. “She had a talk with each of them,” Mark said. I cannot imagine. Can not.

Carefully, I continued. “You may want to think about what you want to say to each of them. For them. What they need to hear from their dad. What you’d want them to hear.” Mark did not respond.

Yesterday, Alma asked me how I was thinking about Mark’s upcoming surgery. “It’s like a time bomb waiting to go off in the middle of my life. Whether it goes well or does not, it’s going to be destructive, ” I replied. Because best case scenario, Mark’s going to be AWOL for a while, simply because his brain will have been fussed with and will have to recover. When I say goodbye to him Monday morning, I will not know if, or when, my Mark will return.

On Thursday, Mark had a bunch of seizures again. I was at work and found this out after I got home because Uncle Tat, our general contractor for some house projects, called and said that the AC repair guy had come into the house and found Mark on the floor. “Porky picked Mark up and put him back,” he said. “Back” being on the couch, it turned out. Mark spent the rest of the day in a stupor. Literally tumble-walking from place to place. He was sure he could safely navigate the living space while literally behaving like he was in a game of bumper cars with the furniture. He was sure he could carry a pot of boiling ramen to the table. He sat with us at dinner, not interacting, and at some point coughed ramen across the table and then reached across with his spoon to gather it back up into his mouth. I hovered around him, watching for the need to catch a fall. At one point, he walked over to the bathroom and Alma, being able to see him from their sight line, quietly said, “Seizure” to me. I jumped up and caught him in the bathroom doorway, shaking like an earthquake was rumbling beneath him. “Whatcha doing?” I asked. “Enjoying my happy-legs,” he said.

The next morning, he remembered none of it. At 10:40am, he was making a fuss in the kitchen. I looked over to see him struggling with something at the sink. I heard a pop. “Whatcha doing?” I said, as I watched champagne spill all over the floor. “Celebrating the opening up of my head on Monday,” he said.

He will likely not remember any of the coming week, and quite possibly the weeks after. Today, I asked him how he was feeling about the surgery. “Nervous,” he said, “that they will find something else.” “I’m nervous about how you will be afterwards,” I said. After last summer’s surgery, Mark’s main mission was to fight. He didn’t want anything holding him down, holding him there, making his body something he could not control. He fought. After this surgery, he will have stints in his nose to hold open his sinuses. Based on the last surgery, I can only guess that he will absolutely try to pull those out. “What do I do if you don’t want to comply?” I asked Mark. “Do I go with what you are saying, or do I try to help keep you alive?” “Help keep me alive,” he said. “I won’t know what is going on.” I have warned the hospital that he will likely need to have a bed alarm and to be restrained.

I changed gears tonight and asked Mark to tell me about his happiest time in life. I braced for the possibility of it being something related to his first wife, his first life. The birth of his kids seemed possible.

“Going to Kennywood,” he said. My true Pittsburgh guy. He talked about being in middle school and high school, being with his sisters and his friends, carefree days and nights at the hometown amusement park.

It was sweet, and it was perfect, and it was sad.

This is what I’ve done this year. I can do this again. I think.

Tomorrow is Sunday. And the next day is Monday.

Tick, tick, tick.

Pas De Deux

A few days ago, Alma and I were sitting under the maple tree in the front yard — Kristen’s tree, the tree Mark planted in memory of his first wife — seeking shade on another blazing hot day. I mentioned that our long tradition of going to see the Pittsburgh Ballet Theater’s performance of the Nutcracker would likely not happen this Christmas due to Covid.

The sides of Alma’s lips formed a perfect downward crescent. We’ve been going to see the Nutcracker since Alma was a toddler. Some years we sit in the nosebleed section, take off our shoes, and eat Twizzlers and M & M’s while we watch. Sometimes, I splurge and get better seats. We watch the dancers’ muscles contract and listen to their pointe shoes tap tap tap. I buy the tickets in the summer, and sometimes, like last year, I forget what seats I bought. “Oh, well look at that!” I exclaim in surprise as we are led by the usher down, down, down to the front. We pass rows and rows of little girls dressed in crushed velvet, women in heels, and men in sports jackets. We settle in for the familiar unfolding of a solid narrative in the first half, and then a nearly completely narrative-free second half. 

“No more pas de deux!” I said, thinking fondly of the playful tumble of a dancer’s hands that marks the beginning of dancing with a partner. To distract us from the sad probability of the Nutcracker not being staged this year, I began to imagine how the the narrative could be adapted to include social distancing. Alma jumped right in. “The parents throw a Christmas party, but no one comes.” “Clara’s parents are loving but cold, and just leave her Christmas presents outside her bedroom door.” “The kids aren’t allowed to have friends over, and sit alone playing with their toys.” “The Rat King comes into battle with an automatic weapon, and no toy soldiers can advance on him.”

We were on a roll, laughing at the utter destruction that some dark humor and a Covid-lens could wreck upon our beloved ballet. The show could go on, of course it could! The question is, would you want it to?

Mark and I got married in early March, in our living room. There were three attendants and one dog. With just a few hours notice, Hilary somehow whipped together a bouquet and a boutonniere and a poem. I stopped and picked up a cake from the grocery store on my way home from work. I called our neighbor and friend, Corinne, to come over. Mark kept on his sweatpants and added a sweater. I stayed in my work clothes. After we exchanged vows and declared ourselves married, adding in a first dance  was spontaneous. I knew Mark’s energy was limited, and I quickly asked Alexa to play “Unchained Melody,” my parent’s love song. I held him as we slowly spun in a circle in the middle of the living room.

Mark wasn’t doing too well back then. In the photos, he looks approximately 80 years old. I am smiling and wearing slapdash makeup in an effort to look a bit perkier, or as Mark calls it, gross. Mark looks confused, which was not that he was, but that the radiation had taken such a toll that he really could not move his facial muscles too well. Also, if you have no saliva, your mouth muscles are a little noncompliant. His feeding tube was slipping out from under his sweater as I called out, “Smile!” as Corinne took a photo. I am, he said. 

Next Monday is Mark’s surgery. Ahead of that, it’s been a difficult two weeks as Mark has again had seizures, something the medications had kept at bay for months. The first 911 call was made by Matthew, and Mark refused to go with the EMTs to the hospital. A couple days later, I was on a work conference call on my cell phone when Mark started to seize. The 30 minute call had just started; he fell off the couch. I muted myself, held my body over his to keep him from hurting himself, and eventually guided him back onto the couch. His legs weren’t working great, and he couldn’t answer my questions. When he seemed safe enough, I went over to the house phone and called 911. Occasionally, I unmuted myself on the cell phone to say, “uh-huh” or “I agree” and then remuted to talk to the dispatcher on the house phone. By the time the police and ambulance arrived, Mark was out of it enough, post-seizure, that he could not protest as they loaded him onto a stretcher. The MRI in the ER showed that there’s either new tumor growth or a lesion from radiation. I found that out when they called me near midnight at home, after we left because Mark refused to be admitted as was their recommendation. He gets ornery, illogical and noncompliant after seizures. “Mark, you could have another seizure. We need to find out why that’s happening so that they can be stopped,” I calmly explained. “I’m not going to have another seizure,” he replied. “Why not?” I said. “Because I’m not,” he said. Really, there’s not much to be done when he gets to that point.

At subsequent follow up and pre-op appointments, a bevy of doctors concurred that statistically it’s most likely that the spot on the MRI is a radiation lesion. The radiation oncologist said that the peak of these lesions occurs 1.5 to 2 years after radiation ends. I’m just stressed enough that it actually took me a few days to realize that this “good news” meant that rather than new tumor growth, he may have damage to healthy brain tissue that fell within the radiation field. Which is better. For sure. I think. Definitely. Kinda.

The skinny on the surgery: best case scenario, which the neurosurgeon says is the least likely: get in there easy-breezy through the sinuses, clean out scar tissue and remove the prosthetic. This works if tissue has regrown between the prosthetic and his brain. Then, no opening of his cranium would be needed. The more likely scenario, because they radiated the heck out of his head and tissue isn’t into regrowth when you have actively tried to kill it: 8-10 hour surgery, opening up his skull, removing the prosthetic, removing the necrotic tumor, sending tissue repeatedly to pathology to see if there are active cancer cells as they chip away at the area, patching the hole in his brain lining created by this process with a graft from his leg or arm, hoping that it vascularizes.

If not, rinse, repeat.

Last night as I slept, Mark wrapped his cold, thin body around me. Sleepless in the night, I reflected on how our sleeping positions have varied over the year. From this, our normal close embrace, to Mark being gone for what felt like a very long time. When Mark finally returned, he would sleep the sleep of the dead, collapsing on his side of the bed and then waking like a zombie to wander the house in the middle of the night. Months of that evolved into him falling asleep on my shoulder, and then waking in the night to relocate to the couch. Months of that evolved into him staying in bed with me the whole night, navigating his tossing and turning to align with mine.

Last night, I counted the nights. Four more until his surgery. And then he will be gone again. And then, we just don’t know.

If you wonder if it’s all pure love and sadness over here, it’s not. A couple days ago, Alma texted me at work and said that Mark had just returned to the house — in the van. Mark does not have a license, and with his seizures he should not be driving. “What did you do today?” I carefully asked when I got home. “Oh, not much. I went up to the school to take a walk,” he said. “How did you get there?” I asked. “In the van,” he said. “It’s just a short drive.” I gently reminded him that he is not supposed to go anywhere alone, due to the seizures and trying to protect his head prior to the upcoming surgery. I did not say anything about the driving, because instead I am just planning to make sure we all do a better job of hiding the keys. Tonight, Alma answered the house phone. It was the Bethel Park post office calling to say that they had Mark’s passport. It had been found in a strip mall in Bethel Park. “Hey Mark,” I said after dinner. “Did you go to the Bethel Park Shoppes?” “Oh yeah,” he said. “Why?” I asked. “I wanted to get ramen at Aldi.” He had not gotten any. I asked why. “I got distracted,” he said, “and my passport must have fallen out of the car.”

Listen, I want to kick Mark’s ass about as often as I want Jesus to take the wheel. This is all very difficult, and I realize I have no control over any of it. If Jesus does, that would be cool. If Mark did, that would be cool. If the neurosurgeon and ENT surgeon and anesthesiology team and nurses and every darn person in the operating room have some control, that would be cool.

Because I like the pas de deux. Sometimes it’s been as peaceful and elegant as the dance of the Sugar Plum Fairy. Sometimes it’s been as chaotic as the clown car opening up and the dancers spilling out all over the stage, wrecking havoc.

All I know is, I just want to keep dancing.

Grocery Store Sushi

My friends, it has been a week. Lots of Mark action, lots of stress, lots of seizures, two ambulances, scans and blood tests and an appt with the neurosurgeon and neuro oncology, and the best news ended up being that his brain and sinus surgery is not cancelled. That’s right, it’s somehow Great News! that he gets to have this extensive and challenging surgery. I have retreated to my happy spot: in my car. The air conditioner is blasting and I’m parked in the shade in the corner of a funeral home parking lot, eating grocery store sushi. A few moments of peace. And a smile, just so you know I’m okay.