One year ago, Mark finished the chemo and radiation that turned him into the fossilized human on the left. He was grey and thin. His skin was dry and in places, fried. Soon after this photo was taken, he clutched his chest one night and in a rare instance, said yes when I said I wanted to call an ambulance. They admitted him and gave him a feeding tube. I asked the doctor, bluntly, “what are we doing here?” They asked me back what I wanted to do. Days later, Mark went to rehab, again, to relearn how to safely walk, to retrain his brain to make the connections it had forgotten how to make. He lived in a chronic fog. He paddled his feet and moved down hallways in a wheelchair. He wanted to come home. He was a mess.
He’s been a mess several other times this year. Last night at around 3am, I woke up to him getting out of bed to go to the bathroom. I watched him walk slowly to the doorway, pause, wobble ever-so slightly, and then as I yelled “Mark!” he fell straight back, out cold. I heard the dogs leap off kids’ beds at the commotion. I crouched over him. He opened his eyes. “What happened?” “I don’t know,” I replied. “A seizure or blood pressure drop.” He didn’t remember walking over to the doorway. He sat up slowly. I guided him into the bathroom, stayed with him, held his hand to get him back to bed.
This is still a part of our days, these sudden moments of terror.
I didn’t fall back asleep for a long, long time.
Also real is that mostly these days, he’s the healthy-ish guy in the photo on the right. He remembers things day to day. He eats food. If he is having a good day, he reads. He spends time working on a puzzle. On a really good day, he might put away the dishes. When I go into the kitchen to make dinner and then return to the couch, he tells me that he misses me, “when you go all kitchen-y.” He feels like his quality of life is pretty good.
Over time, I have gotten better at retaining all the things doctors and nurses and aids and therapists tell me. At every new or unusual juncture, though, I rely on notes to help me scramble up to the new level of understanding needed to manage. Then, I rely on notepads and my phone. I scribble down new words to look up. New procedures. Things to remember. Things to ask.
Today I opened my Notes app and read the following, typed two weeks ago:
staphylococcus aureus
stenotrophomonas maltophilia
haemophilus influenzae
polymicrobial
anaerobic pending
Do you want to lay back? “Do I want any bats?”
That last note I took on Day Five of Mark’s inpatient stay after his recent craniotomy. He was sitting propped up in bed, having just eaten lunch. The part of his skull that was missing was staring me in the face. I was eating cafeteria sushi in my chair. “Do you want to lay back?” I asked him. I was approximately five feet from him. “Do I want any bats?” he asked, repeating what he had heard, in his predictably unironic manner.
I carefully suppressed the laugh I so wanted to belt out. It would have helped me. I also could have started to cry. That would have helped me, too.
This particular surgery and inpatient stay of Mark’s was manageable, in practice. I got through each day taking care of “myself and each other,” as Lester Holt reminds us to do nightly on broadcast news. I found enough time to be with Mark, to interact with the medical team, to get home and eat with the kids, relax on the couch, and sleep. I talked to friends and paced myself with my time at the hospital and bedside. I did all the things I could to be kind to myself and everyone I care for day to day.
And yet.
Two days after I brought Mark home, I went right over the caregiver ledge. I had thought I was doing just fine. Hanging on in another hard time. I had done it before. I could do it again. But there was something about this one. The cumulative effect of it all? The pandemic? The isolation? The brutality of this surgery? The marks on Mark’s belly and thigh where they had prepared to harvest tissue, had it been needed, for repairing the graft? The PICC line he came home with that pours the magic survival-juice out near his heart? The reality that his body is being used to replace other parts of his body, like a biological scrapyard?
Okay, maybe you get why I tipped right over the “I’m fine” edge.
I had thought I was doing fine, all the way until I wasn’t. I literally fell off the caregiver cliff, hard. I spun out. I freaked out. I fussed and fretted and despaired. And then I spent last week recovering. I slept a lot. I bought and wrote in journals. Gratitude. Self-care. I reconnected with my therapist. “You are grieving,” she said. “I am?” I sputtered. I had no idea. I trust that she’s been paying attention for the last three years I’ve worked with her. “This is not the life you had planned,” she said.
I mean, she has a point.
And yet. It’s all going well, right? Mark is doing so well. This is the one year anniversary of him finishing chemo and radiation. He has had no recurrence of cancer, and that is for sure Great News. “Is he in remission?” I ask the doctors. “Not yet,” they say kindly. “Are we out of the woods yet?” I asked the neurosurgeon yesterday. “We are no longer in the middle of the woods,” he replied. “We are on the edge of the woods. We will be there for the next six to twelve months.”
Okay.
What is time anymore, anyway?
As the surgeon spoke those words, in front of Mark and me and behind the surgeon, was one of the many framed prints that are in the neurosurgery examination rooms. They are all lovely landscapes that, strangely to me, have plants but no animals. During the two hour wait for the neurosurgeon, while Mark napped on the examination table, I retrieved the stickers my friend had mailed to me for just this occasion. I added four living things to the slightly lifeless landscape.
This is how important it is to find agency in a life that is so very far beyond your control. Four removable vinyl stickers made me very, very happy as the doctor removed the sutures from the ear-to-ear incision in Mark’s head. And I hope the next person waiting in this stressful room notices them, and that they give them a smile.
“Let me know if more red spots show up on his head,” the neurosurgeon said. Thanks, I thought. I did back in December, and it took until my third time alerting you in January for you to realize his forehead bone was infected. And now it’s gone. And now he’s on six weeks of IV antibiotics at home. But for sure, I’ll be the first to let you know.
Back to my Notes app. The final note from Day Five was this: “Doc by the elevators.” While visiting Mark, I took a break to go to the cafeteria. Near the elevator bays, a young male doctor was speaking quietly into his cellphone. His tone was frustrated, and the topic seemed to be a car purchase that somehow went south. With careful words, he was explaining that he had been very polite up until now, but he could not tolerate the situation any longer. The elevators doors opened. I went up to the 11th floor, bought some snacks, and headed back down. When the elevator doors opened and I exited back onto the neuro floor, the doctor was finishing his phone call. “Is there someone I can speak to?” he asked. “A manager? I would like to document my sorrow.”
Me too, I thought. I’d like to document my sorrow.
Mark is home now. His pathology shows that he needs to stay on an aggressive antibiotic regime. The infection had gotten into his skull bone, into good tissue. Even though one of the medications can cause seizures, and in fact I have observed some seizure behavior, it is the best course of action given the severity of the problem.
He is often so good these days that I have to remind myself that he just had a craniotomy less two weeks ago. He needs to nap a lot. He sits and watches the squirrels digging for buried treasure in the yard. At night, I gently wash his healing incision while we watch Jeopardy.
Tonight I asked him if I could touch his forehead. He said it was sensitive, and he guided my finger to just part of it. It felt soft and warm. If you run your finger up your nose to the bridge, right before your eyebrow, that is where Mark’s skull bone stops.
It’s like leaping off a cliff, out into the unknown. No bone, just a wide gap of soft tissue, leading you from here. To there.
It’s all of it. It’s the reopening of the repeated trauma of seeing Mark’s head stitched together again. It’s the new trauma of seeing Mark’s new head, swollen and settling into some new norm. It’s learning a new set of medical terms. It’s during Covid, meaning Mark and I are doing this alone. It’s during political unrest, meaning I have to carefully navigate outside information to keep my stress levels in check. It’s during the winter, meaning I can’t take breaks from the hospital to sit in the nearby urban park and just let the sun soak into my skin.
While Mark was sleeping this morning, I took my first long look at his forehead. I watched it. I filmed it. I tried to make sense of it.
The day before, I had gotten my first glimpse. I had to leave the room, get air, take a moment to cry it out. It’s not a sagging tent. The doctor removed more bone than expected. He removed the dead bone flap, which was expected. But the surgeon also could visualize infection in surrounding “good” bone. So they removed that, too. And then rounded the edges. It looks more like, if Mark’s head was made of clay, that someone threw a lemon at it.
I don’t understand it yet, but sometimes that area just lies there still. Sometimes, it comes to life. When I took the video, Mark was sleeping and with each breath, his lemon-spot would rise and fall. Sometimes it would kick out a pulse-like action. Other times, all it is is a quiet little indentation.
During Covid, the only community we have while inpatient is each other, and the nurses and aids. The nurses and aids on Mark’s floor seem to average out at 25 years old. They are wonderful. They do all the things they need to, and then some. They all but tuck Mark and I into bed as we lie next to each other, demonstrating a kind of nurturing that I find remarkable for their age. There are more male aids than we’ve had in the past, and they are all in nursing school. One soft-spoken young man told me he’s aiming to become a midwife after becoming an RN. Then he said, “Do yinz need anything else?” A future proud Pittsburgh midwife, for sure.
Why is Mark still inpatient? Those gosh darn bacteria. The neurosurgery and ENT surgery teams are waiting on the infectious disease doctors to finish identifying all the “bugs” in Mark’s head before discharging him. The surgery was on Monday. How long can it take to grow these cultures? The path lab has identified two out of the three bacterial species that have popped up in the tissue samples. Which drugs will need to be given, and the frequency and rate at which they will have to be given, is the big question as we wait on binary fission. For now, the docs are taking the scorched earth approach and are giving him lots of antibiotics. That’s not great on his system, so they will narrow it down to the right drugs for the right bugs when they decide what to prescribe.
Mark’s got his PICC line in, and they’ve started training me in how to administer what will be six weeks of IV antibiotics at home. It’s a lot. Sterile procedures, refrigerated drugs, some may need to be mixed, saline and heparin flushes…even the exact equipment I’ll have to use will depend on which antibiotics they settle on using.
Mark, after a few days of “So what time am I going home today?” has settled down. Almost eerily. Yesterday, he used the call button to reach the nurse. “I need to go to the bathroom,” he said. And then he waited for them to come in and help him. If you’ve read about any of Mark’s past hospitalizations, this is a far cry from the ornery guy who pulled out lumbar drains and had to have a room sitter assigned to him.
How is Mark? He’s pretty good. He says no to all pain medication, and he reports that he’s a “2” on the pain scale. He’s periodically confused. “Did the doctor say I get to go home after dessert?” No, honey, he didn’t. He’s nauseous on and off, which maybe is because they are wiping out his whole microfauna while we wait on the path lab. Or, it could be because he was nauseous on and off even before this new development. Who knows. Sometimes he will let them give him a Zofran shot. Sometimes not.
My head is a little swimmy and scattered while I try to integrate this new reality into my understanding of Mark and my life. It’s a strange reality. The nurse joked with me that Mark looks like Jimmy Neutron, because his hair is sticking straight up behind his incision. I spent time trying to figure out what animal his head was reminding me of. I looked at head shots of praying mantises for a while. Then it struck me that the right vibe is more the Geico Gecko. Then I swung to thinking about how his head is reminding me of a pregnant woman’s belly. You can watch it for a long time and see nothing. And then sometimes, you see a sudden kick of the living thing inside. And then I swung to thinking about all the edges of things in my house. What if Mark blacks out and falls against a corner of a piece of furniture? Can I round every edge in the house?
And then there’s the boys. I drive home from the hospital every day, and I am drained. Twice, I’ve stopped at the only restaurant nearby that has a breezy open patio. I have dinner alone just to give myself time to decompress before entering the house. Our community has started a meal train, and thankfully I can come home to the boys plating hearty, warm food. They are usually yucking it up about something. Michael is giving Matthew ridiculous math problems to solve. Ben and Matthew are teasing each other about something. I try to engage, while looking for space to give a simple update. I don’t really know how to prepare them. I am doing my best.
Maybe today Mark will come home. Maybe the home health nurse will come to make sure I know what I am doing, the infusion supplies will be shipped and fill up our refrigerator. Maybe tonight Mark will sit on the couch, Robert snuggled up next to him, while we watch Jeopardy and Wheel of Fortune. Maybe tonight, after making sure Mark is safe in bed, I will sit with the boys in the living room and we will process all this.
Mark was admitted through the ER last night. Over the weekend, he had developed a sore throat and a cough — the tiniest of Covid symptoms, really — and to his absolute disapproval, I called the pre-op number and told them. “Who brainwashed you?!” he had blurted out after I had called the doctor last week to report the red spot in his forehead dent, leading to this whole surgery. He really, really does not trust my medical judgement. And I had just proven to him again to be unreliable.
It was Sunday at 9:30 am when I got through to pre-op and we were asked to come in for a Covid test and direct admit. Mark agreed to leave our house at 4:30 pm. Okay. I waited. Once we got to the ER, the neurosurgery resident reported that if the test was positive, the surgery would be postponed. “Because it would be harder for him to recover?” I asked. “Because Covid is so complex,” he explained. It lives in your respiratory system, but its effect is systemic. He said if Mark had the flu, or a cold, they’d go ahead. “Last week we had a 47 year old man with no other health conditions who contracted Covid. He had a stroke that wiped out the left side of his brain.” “We need Mark at his best,” he continued, “because this is a serious surgery.”
At 9:30pm, the test came back negative for Covid. The great news was that Mark could have his craniotomy on Monday. I kissed him goodbye after he was admitted. That’s some strange great news, I thought as I drove home.
The surgery took three hours today, which honestly is easy-breezy for what Mark has gone through before. Both the neurosurgeon and ENT surgeon came out to tell me it went well. The ENT surgeon was pleased to see that Mark’s skull base graft, placed in August, is healing slowly but surely. They removed the dead bone and other dead tissue, sent cultures to pathology, and sent Mark to the neuro floor to recover.
Don’t you wonder what someone looks like after brain surgery? Well, today it was like a sleeping baby. It was like this.
Do you remember the little cap they put on newborns? That’s what they do after neurosurgery. They cap them. They snuggle them up with blankets. They bring water. They speak softly. They put important signs on the door to make sure everyone knows what to do.
I mean, Mark does do some aggressive nose blowing. He’s never been a spitter. Thank God.
I can see the hints of what Mark’s head will look like. It’s swollen now, of course. I can see that there is bone above his eyebrows that is the high point. Last summer, my daughter Anya (they/them) and I went camping using French military surplus pup tents that we had each purchased from some website they had found with inexpensive camping gear. Anya is a perfectionist who actually is often perfect, and I am a perfectionist is almost never perfect. Their pup tent was taut. My pup tent looked like….well, it looked like what I think Mark’s forehead will look like. A sag between two high points.
The infectious disease doctor came in this afternoon. She asked lots of questions about the home environment, the health of Mark’s surroundings in people, in animals, in any exposure to bacteria. The pathology will take days to come back. Of all the strange wonders of the medical world, one of them to me is that they still have to wait for bacteria to grow into colonies in order to identify what they are dealing with. I mean, I am teaching 8th graders this right now. And yet, it strikes me as so primitive that we have to wait on bacteria to replicate and tell us who they are.
Once the doctor knows, she will prescribe the next course of action. One potential is that Mark will come home with a pic line, and for six weeks I will administer an antibiotic.
Okay, sure, I can learn how to do that. Right? Right.
Tomorrow, because Mark is a fall risk and a guy without 100% of his skull, they may want him to wear a helmet. To which I say, good luck, Presby staff. May God be with you in trying to get him to comply with THAT.
Mark told me he misses our Pandemic Puppy, Robert. It was a hard thing to listen to Mark say goodbye to each of his boys on Sunday. It was a hard thing to watch him wrap up Robert in a blanket and kiss his little head goodbye. “I’ll see Robert tomorrow,” Mark said this afternoon. I took that as my cue to say goodbye for the night. I mean, hopefully not, as I know they think he needs to stay for three or four days. Also, who knows what will happen when Mark wakes up potentially feeling okay tomorrow.
Tomorrow. Well, I am not there yet. I am at home on the couch, tonight. I am going to drink a glass of wine, watch some dumb TV, avoid the news, and wait for sleep to come.
Tomorrow will come, and when it does, I’ll be there.
Over the last 24 hours, I’ve walked 10 miles. Pounded the ground, pounded my ears with music loud enough to prevent my thoughts from straying too far.
My Spotify playlist is a mishmash of my entire life, from the influence of so many people and so many experiences. I love building it one song at a time. I love the randomness of what comes on while I log the miles. Yesterday, four miles in, Alanis Morissette sang/screamed:
You live you learn You love you learn You cry you learn You lose you learn You bleed you learn You scream you learn
Yes, oh Lord, yes.
Four miles in today, I was sitting in the 25 degree sun, eating an apple. A man came by. Dressed in camo, he was smoking a cigarette and walking slowly. “Seen anything good?” I asked amiably. Alma says this is a strength of mine. An ability to start up random conversations with strangers as if I’m picking up on an ongoing discussion with an old friend. He pulled on his cigarette and took out his phone. This park is a popular birding area, and I assumed he might be birdwatching. He held up this photo.
“I’m looking for textures,” he said. He showed me a few more photos and moved on.
There is so much to learn from everyone around us. This week we saw lessons from every angle. Ones we did not want to learn. Ones we still don’t understand. Ones we already knew, but now know better. Questions lead to more questions. And on and on.
I ask Mark every day how he’s feeling. “Excellent,” he now says every time. He’s miffed that I called the doctor last week and reported the red spot, leading to his upcoming surgery. In Mark’s book, this is my fault. He has decided to stop telling me how he is physically feeling.
Last night, he took a break from the miffed. “How are you feeling?” I asked. “Doubtful,” he said. The door seemed a little more open. I asked how he feels about the last year and a half. Have there been enough good times? Has he been able to enjoy life enough to make it all worth it? “Definitely,” he said. Then I asked him if there’s anything else he’d like to talk about. “Kennywood,” he said. The door had closed. We talked about rollercoasters and waterslides and haunted houses.
On mile 9 today, I was watching the forest floor as I strode along. I passed a hillside covered in frost, under which I knew hundreds of trillium rhizomes were waiting for the warmer days to break dormancy and send up shoots. I passed where the wild oats would be bobbing their yellow heads in spring. I remembered where the trout lily leaves will speckle the trailside come April. I found a few leaves of hepatica still peeking out among the detritus, reminding me of the beauty ahead.
On Monday at 5am, I will kiss Mark goodbye in the all-too familiar surgical waiting room. I will have a book and a phone charger and some snacks. I’ll be wearing my comfiest clothes. I’ll ask at the front desk for a blanket. I’ll find a hideaway in some nook where I can gather the furniture around me to concoct a bed. I’ll settle in for a long day in silence, this particular waiting room being a deadzone for my cell service.
Today, I looked up why rollercoasters make the click click click sound as they approach the apex of the first hill. It’s not the chain. It’s the safety device, an anti-rollback mechanism.
This gave me some small comfort. I’m sure, sure that there is safety mechanism in place for us.
I mean, probably.
Right?
Click click click. We are almost to the top of this hill.
This is a medical update, and will read as such. It’s a lot. Read at your own risk.
Good news: Mark’s CT scans at the end of December were good – no cancer from belly to brain. Bad news: he has developed an infection in his head, and he will have surgery on Monday.
Let me give you an overview of the structure of Mark’s head. The original craniotomy (1.5 years ago) was done by removing a large section of the front of Mark’s skull, doing the needed work, and bracketing it back into place. You can’t see any scars on Mark’s head because they made the incision ear to ear, which is behind his hair line. In photos, the circular outline you can see from his forehead to the top of his head is where they removed and replaced that part of his skull.
There are other “dents, ditches and divots” as we call them related to Mark’s multiple craniotomies. Mark often runs his hands over his head and rests his fingers in them, like he’s finding the holes in a bowling ball. One dent makes it look like he was shot in the forehead with a BB gun. It’s a little off center and above his right eye. This is where, in August, after opening up Mark’s head from ear to ear again, the surgeon drilled a little hole in Mark’s skull in order to access and remove some dead brain tissue from his frontal lobe. During that surgery, they also removed part of Mark’s brow bone. They did this in order to access the area where the had to take out the damaged skull base and replace it with a tissue graft (from his leg and stomach). When they put the brow bone back in place, they put a graft behind that with the goal that it would vascularize and provide a blood supply to the area.
Still with me?
In December, that BB gun dent began to go from normal skin color to red. It didn’t hurt, Mark said, and he didn’t have any other symptoms. I emailed the neurosurgeon and sent pictures, and they took a watch and wait approach. Over the past week, Mark started to tell me that his head hurt at that dent whenever he blew his nose (which he does a lot because of his sinus graft still healing). The red spot seemed bigger to me. I emailed a photo to the neurosurgeon, and on Tuesday we went in to get it checked.
The surgeon said this is a complication that he suspected might happen. He pulled up scans, one post surgery showing where the graft behind the brow bone had been placed, and a more recent scan indicating that the graft was gone. It had not vascularized. A potential the neurosurgeon knew, because radiated tissue has a decreased ability to heal. The graft had been reabsorbed by Mark’s body, leaving an air pocket behind Mark’s brow bone. The brow bone died. The air pocket connects to Mark’s sinuses. “Bugs from the sinuses have gotten up there,” the neurosurgeon said. “Bugs love to feed on dead bone. We have to take the bone out.” So. An infection. Between his skull and the dura of the brain. The neurosurgeon said it was not an emergency. Then he said he wanted to admit Mark directly to the hospital.
You know how well Mark works in these situations, right? Not well. He refused. Refused any logical arguments about his health. His kids. Insurance processes if he came in other than a direct admit. The guy DUG IN. “Mark, if you were saying you were done, and didn’t want to try anymore, I’d support that,” I said. “But you are saying you want to keep fighting, for your kids in part. I am trying to support that.” Nope, nope, nope.
We went home. The surgery is scheduled for Monday. I feel a little like I did when a nurse, after an exhausting labor, handed me my first baby. “Why would you think I know what to do with this?!” I am watching him closely for signs of the infection spreading.
The surgery should take about two hours. This is another craniotomy. They will make an incision from ear to ear again. Peel back the skin. Do the thing. Put Mark back together. While they have him opened up, the ENT surgeon will take a peek at the sinus graft which we’ve only been able to see from the outside (up the nose with a scope) view. If they see anything they don’t like (lack of healing, dead tissue in the graft), then we go down yet another surgical pathway. He should be in the hospital for at least a few days, and then come home. I’m not worried about a cognitive dip from this, if everything goes as planned. I’m aware everything may not go as planned.
Final thoughts. Well. For now, Mark has remained fairly visually intact. Yes, he is thin. Yes, he has a few dents, ditches and divots. For this, they are not replacing the brow bone with a prosthetic. The neurosurgeon said Mark’s best bet is to having living tissue against living tissue: his skin directly laying on his dura. He will be disfigured, and it will be an adjustment for him, for the boys, and for me. I am tempted to dive into researching the strength of dome shapes, as I know that they are used for a reason in nature and architecture. We are removing more of Mark’s dome. What does that mean? Do I want to know? Could I know?
Mark is still “visiting,” as I said in an earlier post. That means he’s pretty with it. It means that he knows what he’s in for enough to be scared, and that’s hard to see. “I’m under threat,” he said, as he requested we stop on the way home from the hospital for a box of wine. Well, yes, you are.
Here’s a picture of Mark this morning, taking care of Robert who got a very short haircut. He wraps Robert up and gently pets him, taking care of what he can during these difficult days.
Send up a few prayers to the universe for us, if you have a moment. We are headed for the top of the rollercoaster again.
