DianeIsExhaustedByMark

I’m piloting new names for my blog.

The bowls in my house are missing. This morning, Michael came into the kitchen to get his daily and unchanging breakfast of choice: a heaping bowl of Cinnamon Toast Crunch. There should be roughly 10 bowls in the cupboard. “Where are all the bowls?” he asked me. The cupboard was empty. There were two dirty bowls in the sink. I remembered that Mark had emptied the drying rack yesterday. Michael and I searched all the cupboards. The oven. The pantry. The refrigerator. Nothing. No idea where he put them.

It’s been that kind of week.

Young Matthew thinks he might keep his new middle name, Christpher. I think this is a brave and adventurous choice. I laughed for hours about this birth certificate gaffe. I recognized my delight for what it was; I am at the level of exhaustion and stress where I’m a little loopy and can easily plunge into the kind of hysteria that can morph quickly from laughing to crying, depending on how I take my next breath.

Part of it was how the whole post office scene unfolded. Mark was not in a good brain space when we arrived. He had pulled up the ladder to his mind attic and wasn’t speaking. The clerk was kind. I’m sure it’s confusing to have me, technically not legally anything to Matthew while being operationally everything to Matthew, speaking for Matthew. And for Matthew’s dad. Mark was dressed as he often is when we go out, which to me looks like some version of spy, fugitive, and old guy. He had on a baseball cap, blackout sunglasses, a mask, and his 30 year old yellowed silk softball team jacket. Even on the best of days, Mark doesn’t expend much energy on facial expressions. In this getup, in this headspace, he’s unknowable.

I led the conversation. At the point when I had to explain that Matthew’s bio momma had died, I handed over her death certificate. “I’m very sorry for your family’s loss,” the clerk said solemnly, looking carefully at each of us. I was confused. Did he think she just died? Was this some social rule I didn’t know, that you still offer fresh condolences eight and a half years after a death? Mark and Matthew sat in stoney silence. I awkwardly accepted the condolences on their behalf. Then the clerk pointed out the misspelling of Matthew’s middle name on his birth certificate. I believe I snorted. “Did you know that, Mark?” I asked. He didn’t answer. Finally it was time to pay. I had brought Mark’s checkbook. I filled in the information and passed it over to him. “Where do I sign?” Mark asked, breaking his silence. I was startled. Even though I have been taking care of all the finances since the onset of Mark’s illness, I didn’t think he wouldn’t know where to sign a check. I held my finger on the line while he signed. “Again,” the clerk said, standing as we left, “my condolences on the loss in your family.” We stood as I thanked him again. I put out my hand for Mark to hold. On good days, this can feel like what any normal married couple does. Every day, I am aware that I’m providing Mark protection, stability and guidance. This day, instead of grabbing my hand with his left hand, Mark took my hand with his right hand, like we were shaking hands. He held on as I led him out of the post-office and to the car.

Whew.

I went to a Dutch Christian Reformed college, and the students had some clever ways of not cursing in practice but cursing in spirit. So for the benefit of my dear parent’s, here’s how I feel about how this whole situation went down.

Jeezum Crow.

A few hours later, dinner was cooked, eaten, and cleaned up. The boys were back on their computers and Mark and I were parked on the couch for our evening TV cycle. Mark got up and went into the bathroom. A few minutes later I heard a crash. I went running, beating Michael and Matthew by a few seconds. Mark was laying half in, half out of the shower with the shower rod and curtain pulled down over his head. When the rod fell, it hit the faucet and the showerhead was raining down on him. Mark looked confused. I turned off the water, pulled the rod and curtain off Mark and pulled him up. “It’s okay! It’s okay!” I said to no one and to all of us. I guided Mark back to the couch, where he sat quietly in his wet sweatshirt until Wheel of Fortune ended and it was time for bed.

Jiminy Crickets.

So this morning, when the mystery of the bowls happened, I ranked it right up there with learning that Matthew is Matthew Christpher. Of some consequence, but in the scope of things, not much. Michael and I did the only thing we can do. We laughed, and moved on.

No Spoons

We took our youngest grasshopper to the USPS today at apply for a new passport. Where the clerk pointed out this tiny problem. See, this is an example of the usefulness of spoon theory. Do you know how many spoons I have to deal with this? None. Zero spoons for this. “This is your name now, Matthew,” I told him.

I NEED MORE SPOONS

Look how innocent Mark looks in this morning’s photo. In reality, he has been rough for the past 24 hours. He’s been perseverative, something that can happen with his wildly unpredictable brain.

I noticed it yesterday when we went to Aldi, which he loves doing. He pushed the cart throughout the store, as usual. He unloaded the groceries onto the belt and paid, as he likes to do. Off baseline, though, with my endless observation of him, he simply watched me bag up the groceries rather than helped. Then when he pushed the cart out towards the car, he didn’t seem to remember which way to go. I pointed. He adjusted a bit, but still aimed for the front of the car rather than the lane behind the car. I tried adjusting him, but he ignored me and kept going.

It wasn’t clear to me that the cart would fit between our car and the vehicles on either side. He aimed for the side with a huge SUV. With a young mom in the driver’s seat. I tried to grab the cart to guide it. Mark ignored me and kept going. He started to line it up to go between our car and the SUV. The woman looked confused. I pointed to my head, and Mark’s. “Brain injury!” I mouthed. But that’s not a universal motion, like the sign for choking. Young Mom looked confused. I quickly squeezed between our car and her SUV and grabbed the cart to keep it within the slim margin between. We navigated the gauntlet. Mark stood silently as I unloaded the groceries into our open hatchback. “I’ll take the cart back, and you can rest,” I said. “Yeah yeah,” he said, looking at me, unmoving. “YOU SIT IN THE CAR AND I WILL RETURN THE CART,” I tried again. He got into the car. I raced the cart back to its bay.

So it’s surprising, and not, when last night, Mark tried to get the car keys out of Michael’s hands. “You aren’t allowed to drive, Dad. You don’t have a license and you could have a seizure.” God bless Michael and his endless patience and rationality. I can’t imagine playing this role with your dad, when you are 20 years old.

Mark doesn’t often get like this, in recent months. And when I have to assert, NO YOU CANNOT, I feel like I’m kicking a puppy. I know it’s the right thing to do. It’s not that. It’s that I can imagine how it could feel to be told YOU CANNOT when he must feel like, OF COURSE I CAN.

It would be terrible.

I know, being Mark’s caregiver, that I am in a tiny box that is unimaginable to most. Mark is in an even tinier box. That I cannot imagine. And yet, I must keep him there.

This morning, after I told him he couldn’t take the car out for “a spin around the block,” as he posited, he laid down on the couch to go back to sleep. It was 8:15am. At 7:30am, we had talked about my schedule and us going out to lunch together.

Later, after teaching my first class, I checked in with him about lunch. “So at 12:30,” I reminded him, “I’ll be ready to go out to lunch.” “We’re not doing that,” he said. “Why not?” I asked. “Because you changed the plan,” he said. “How did I change the plan?” I asked. “By saying I couldn’t drive there,” he said.

Nevermind that that’s not actually what he had proposed. I had to go teach another class. “Let’s see how you feel in an hour,” I said.

In an hour, Mark still did not want to go out to lunch. But he had chilled out, after napping and snuggling with Robert. Pandemic puppy for the win. Who I would never kick, also for the record.

I would think anyone who’s dealt with a loved one with a dementia diagnosis can relate to this. The absolute pain of the confusion. Of saying, “No,” to something that to your loved one seems like a reasonable request, a simple pleasure.

To be the agent of denial.

I do not like it.

This is not cancer.

This is not cancer.

I just want to make that clear, because someone asked. This is the aftermath of cancer and cancer treatment. Mark is currently stamped the glorious NED (No Evidence of Disease). The aftermath of cancer without treatment would have been no Mark. Instead, we have Mark and a lot of chronic problems. And acute problems. We have problems.

On Friday, we drove the well-worn path back down to Presby and met with Mark’s newest ENT surgeon. While we waited together in the exam room, I said something positive, like, “This is the best doctor’s office! They are always on time!” Mark looked at me with a rare look. One of fatigue. At me. I gave it a guess. “Do you get tired of me being positive all the time?” “Occasionally,” he said. “Should I try to be more pessimistic?” I said, perkily. “Yes,” he said.

We were quiet for a while.

“Am I allowed to be fake-pessimistic about things?” No, he said, I can only be genuinely pessimistic. “That’s going to be hard for me,” I said.

The PA came in and shot numbing agents up Mark’s nose. This was to get Mark ready to be scoped, which is an extremely uncomfortable procedure that he literally never complains about. She checked his ears and left.

“You could complain more,” I said. “You never complain.”

Above his mask, Mark’s eyes lit up a smidge.

“No!” he said. “I refuse!”

“I bet you can’t!” I retorted.

We both laughed. Then we went back to quietly waiting.

The surgeon came in and introduced himself. “Who do we have here?” he asked Mark, pointing to me. I wondered if this was a quick cognitive check. Which would be fair, I am constantly giving Mark little cognitive tests. Yet I also have come to learn that any one data point is pretty meaningless. In that moment, Mark could say who I am to him. Also, though, a few minutes earlier, Mark had turned to me and said, “I wonder why they shot something up my nose but then looked in my ears.” On a scale of 1-10 for that remark’s indication of his cognition, in that moment, I’d give him a 3.

The surgeon palpated Mark’s head like he was shopping for a melon at the grocery store. He felt Mark’s forehead, temples and cheeks. He pressed on Mark’s forearms and watched the blood move. He had Mark drop his pants and felt his thighs.

The short of it: the surgery likely will include taking tissue and muscle from Mark’s thigh, as well as veins and arteries from his forearms, in order to fill in Mark’s no-skull “dead space” with living tissue. “We’re going to pack it,” Dr. S said, “because there’s always a chance that the tissue will separate again. He’ll have a lump on his forehead, but it will likely go down.”

I nodded. Okay. Nothing like being told during the surgical consult that the surgery may not work. Or that your upcoming trauma will be a visual reverse of the previous post-surgical trauma of seeing the skin sag between Mark’s eyebrows and his brain pulsing beneath.

“So Mark,” I said loudly and probably a little too brightly for Mark’s mood, “You’re going to go from having a valley to a mountain.”

Yes, the surgeon concurred.

“It will be a cranial approach,” he continued. Ten minutes into the appointment, I already was beginning to go down the sinkhole of mental overload. An ear to ear, incision. Again. “I think in Mark’s case, I will not be able to connect the blood vessels into his cheek, so I will need to drape them down and connect them into his neck.”

This took me a minute to process. I pictured exactly what the surgeon said. Blood vessels draped down Mark’s face. Inside, I mentally corrected myself. INSIDE his face. How do you get blood vessels from a forehead to a neck, I thought? Remove his whole face and then stick it back on?

“I’ll try to save his forehead skin, but if not, I’ll replace it with thigh skin. “

I pictured that. Hairy man-thigh-skin stuck to Mark’s forehead.

I noticed I was listing in my chair. I straightened up. I turned my focus to Mark. How was he receiving this? “Is there anything else you wanted to ask, Mark?” He looked at me blankly. “Did you want to ask when the surgery would be?” I prompted. Mark faced the surgeon. ‘When will the surgery be?” he asked.

That part remains unclear. Dr. S is deferring to Mark’s other ENT surgeon and the neurosurgeon to decide the immediacy. “Getting three surgeons together is like herding cats,” Dr. S laughed. Within a month or two, he thought possibly. Or if Mark’s skin starts to deteriorate faster, sooner.

On the drive home, snippets of Dr. S’s sentences and the images they conjured clicked through my mind like slides on a Viewmaster. Five percent chance of blood clots. A week of inpatient monitoring. Drains. Sutures. All the stuff.

ALL THE STUFF.

When we got home, Mark laid down to nap. I called my parents to explain the situation. I had a moment. “WHO DOES THIS? Harvests and drapes veins? Psychopaths? Serial killers?”

Surgeons. Surgeons do this. And I’m grateful. And freaked out. Reasonably.

“There shouldn’t be impact on his brain from this surgery,” the neurosurgeon explained to me last week, “because we won’t be cutting into his skull.” Okay, sure. Per Mark’s request, I am willing to be pessimistic about this. I think his brain may react. Based on experience, I think that’s fair to assume.

“How did the doctor appointment go, Dad?” Michael asked later. “They’re going to attach tissue to my forehead to cover this red spot so it doesn’t get infected,” Mark responded. Michael glanced over to me for confirmation. I shook my head, yes, close enough. “Is that a big surgery?” Michael asked Mark. “Oh, it doesn’t seem like they think it will be too hard,” Mark said. Michael glanced at me. No, I shook my head.

On Saturday, I forced myself to have some me-time. I spent a couple hours with my friend Hilary. I fought a feeling of guilt, knowing that by leaving Mark home with the boys, I was negotiating some balance between my own wellbeing and Mark’s, which of course are intertwined. But I knew I needed more spoons, to use a concept Alma taught me. A “spoon” is like a mental unit representing your capacity to cope with what life is throwing at you in the moment. As I was listing in the surgeon’s office, I had thought, dang, this is going to take a LOT of my spoons. The way to get more spoons is to do some darn good self-care, whatever that looks like for you.

Driving to Hilary’s, I thought, Mark’s going to have some bad crap happen soon. I need a big dollop of love and friendship and sunlight and laughter. If ever there was a need for me to build a bunker of emotional resources, it’s now. Because whatever is ahead, it’s gonna be rough.

Filling in the Dead Space

“I’m not unhappy,” I told a friend the other day.

Most days, that is true.

Today is not one of the those days. I am messy. I am terrified, and sad, and angry, and depressed, and trying, trying to find some footholds along this path. There’s too much rattling through my head. I ask Michael and Matthew to tag-team in watching Mark for a couple hours, and I set off for the park. I need to clear my head.

I stick in my earbuds and turn on my Spotify playlist. For the first mile, the things I love — the trail and wetlands and plants and birds — don’t come into focus. My mind churns. Everything is a blur.

The neurosurgeon’s phrase keeps playing in my head: “fill in the dead space with something living.” He means it literally. I think about that for a while. The technical aspects of it. Mark’s brain and skull and skin.

Then I think about it figuratively. This is what we each have to do when we encounter difficulty, right? The dead space could be fear or sadness. The dead space can be loss. The dead space can be change. The dead space can be the pause we take at the fork in the road. Which is the next best step to take?

I’ve hit dead spaces in my life, over and over, I try reminding myself. We all do. At times, I seize up and become very, very still. Waiting for something ephemeral to brush past me, showing me the way. Sometimes, when a particularly rough patch occurs, I navigate through the turbulence by creating my own. I pick a physical goal. Something sizable and concrete. A test for my body, or at least a distraction, while my mind rassles down something else. How to adjust to reaching the ripe age of 50? I trained for and rode my bike from Pittsburgh to D.C. How to get through relationship hurdles in my 20’s? I trained for and ran a marathon. How to find my way out of a rather debilitating eating disorder in my teens? I walked 800 miles to benefit Habitat for Humanity.

The preparation is always equal in importance to the accomplishment of each goal. The training provides months of focus. The challenge provides adventure and a sense of achievement. With each of these endurance projects, I’ve been surrounded by massive support from family. My brother Scott, sister-in-law Karen, niece Allison and her wife Kelsey and their 3-month-old Ellie joined me for the bike ride to D.C. My brother Dale took on the marathon challenge with me as a long-distance running buddy. Dale also was my companion and support on the Habitat for Humanity walk that took us from Maine to North Carolina. My parents have supported me in every way, from trusting that their tiny little 19 year old daughter could survive walking an average of 25 calorie-gulping miles a day for a couple months, to coming to Point State Park to cheer on the start of our big bike ride.

Each of these events is a long story in and of itself. But my takeaway from my experiment with this life is this: challenges remind me that I can do hard things. I have to do it myself, but I never have to do it alone. All it takes to be an endurance athlete is to keep going. That, I can do.

This journey with Mark pushes me to be an endurance athlete of a different kind. Yes, I can occasionally get out and take a long hike or bike ride. This is very good for me. But mostly, the endurance being tested and exercised is that of maintaining my strength, hope, and focus on a journey with no clear destination, other than the very core of survival. His survival. My survival. And his kids, too. We need happiness as well. I think we have it, most days. I tease the boys. I find ways to be playful with Mark, which is usually verbal goofiness. We spent quite a bit of time playing with the word “twiddle” the other day, which is derived from “fiddle” and “twirl.” Mark would say, “twiddle” and I’d say “fiddle” and he’d say “twirl” and we’d loop back and start again. You’d be surprised how much of the day we can pass like this. Punctuated by naps on the couch.

I know I can get through whatever is next, but the memory of Mark’s medical trauma haunts me, cropping up in what feels like a muscle memory. The falls and seizures and ambulances and surgeries. The doctor asking me what his wishes are, should his heart stop. The surgeon saying, “It’s not an emergency, but we’d like to admit him right now.”

With last week’s call from the neurosurgeon, I am alert. I know that in the next few months, I again will experience trauma. The soft gauze covering my delicate psychological and emotional wounds will be ripped off, and I’ll have to see what needs to be done to patch me back up. It can’t be avoided, even if everything goes well with Mark from a surgical point of view. You can’t see your loved one be chopped up and reassembled without it being traumatic.

I’ve done this before, I thought on my hike. I can do it again. Breathe. Repeat.

It was around mile two that the trailside began to come into focus. The blanket of spring beauties and hepatica splashing the forest floor with pink and white. The single, fragile bloodroot blossom being hugged by its emergent leaves. Two trout lilies leading the pack in blooming along the creek. One red trillium heralding the arrival of the soon-to-be thousands that will join it in blooming over the next couple weeks. Blue cohosh rising high in the floodplain. A single mayapple leaf beginning to unfurl.

I kept going. Three miles, four miles, five miles, six miles, seven.

There’s really not much I can do to train for what is next in our lives. I am trying to rest. Rest my head, rest my heart, rest my body. Sometimes resting looks like being very still. Sometimes it looks like calling a friend, or sitting quietly on the porch holding Mark’s hand, or laying next to him listening to him breathe.

Something is coming. We will need to face it. I think we can.

TBS – Medical Update

The Big Surgery. That’s the shorthand I’ve been using for many months to describe this one. For almost a year, the neurosurgeon has been warning us that TBS might be in the cards. The craniotomy last August was not The Big Surgery. Neither was the one the August before. Or the one this past January.

“This is the ultimate fix,” the neurosurgeon has said repeatedly. “We know this will work, but it’s a very long surgery and has risks, so we want to try a different approach first.” That was last August. And then they unzipped Mark’s head and did the different approach first, in a surgery that lasted a dozen hours or so. And Mark has spent a year recovering from that.

So, this surgery is …. more complex? What’s more complex than unzipping someone’s head, removing their skull base, harvesting and installing in a tissue graft, ultimately adding some stomach fat to the graft, getting a CSF leak, and ending up with necrosis and part of your skull removed?

I mean, that seemed kinda big.

Free flap. That is the name of this procedure. The reason for it is this: the surgery in January did not actually do what they hoped. I’ve known that for a couple months now, in addition to knowing that at least one of the bad bacteria that Mark had to fight likely arrived through him being colonized in the hospital setting.

I found it too upsetting to talk about.

Since January’s surgery, I continue to visually monitor “the red spot” on Mark’s head. I email pictures to the neurosurgeon and write, “Should I worry now?” “How about now?” Not yet, he says. Keep monitoring. Keep sending pictures. Once, in early March, they brought him in for an MRI. The MRI did not show any new necrosis of his skull bone, which is GREAT NEWS, but it did show that the air pocket that they hoped would disappear from behind his forehead skin has not.

When you and I take a breath, the air goes into sinus pockets, which are surrounded by healthy bone tissue. When Mark takes a breath, the air goes up into his forehead and swirls around between the inside of his forehead skin and the repaired (and therefore “not normal” as the neurosurgeon says) lining of his brain. That’s how the bacteria established a front line up there in the first place. The goal of January’s surgery was to remove the dead tissue the bacteria was snacking on and have Mark’s forehead skin collapse against the lining of his brain. However, it didn’t collapse enough, despite the fact that if you look at Mark his forehead does look rather, you know, collapsed.

I thought I was only monitoring the red spot for fear of infection. Turns out, air isn’t too great, either.

“The path is clear… When you take a thin layer of skin and put air on both sides, it doesn’t survive…The tissue will eventually break down and there will be a draining area in the forehead…he will be left with a hole…nothing between the outside world and the lining of his brain…” These are my notes, scrawled on a piece of scrap paper during my phone call with the neurosurgeon.

“We need to fill in the dead space with something living,” he said.

He really is so very quotable.

The plan is to take vascularized tissue from Mark (thigh, perhaps) and sew it into place in “the dead space.” A plastics guy will meticulously sew all the blood vessels from the graft directly into blood supplies in Mark’s head. Then Mark’s forehead skin will have a nice place to rest right against a healthy piece of tissue being fed by a healthy blood supply, right next to Mark’s brain lining.

Like a life-sustaining tissue sandwich.

Mark doesn’t really know this yet. He knows that they want to discuss a surgery to solve the problem of the air pocket and the potential for infection. He doesn’t know it’s a 14 hour surgery, with multiple sites for wound repair, a recovery on some scale of those he’s had before, with all the risks inherent in any surgery let alone surgery on Mark. I think we have time to let this slowly unfold. The surgeon said he thinks we should do this within the next handful of months.

None of this is great news. We’ve just had the longest stretch of time since June 2019 without medical interventions being our primary hobby. Our days are comfortable. We spend a lot of time together. One day recently, I said, “We had a lot of adventures yesterday!” We had gone to Aldi and then stopped at Starbucks to pick up a coffee. “We sat on the front porch, too,” Mark said, without an ounce of irony.

Yes, yes we did. And that is much more than we typically do.

Last week, Mark and I went out to lunch. We both have had our vaccinations, and it felt okay to try. “You know,” I said, “I think you have become a different kind of partner to me. Not only a friend, not only a best friend, not only a husband. I feel more integrated with you. Like we are one.” “I feel the same,” he said. “When we are sitting on the couch together at night, there is nowhere I’d rather be.”

He was having a good brain day. The week before, he had tried to cook perogies in the cast iron skillet while they were still in their plastic bags.

I’m reluctant to give Mark back to the medical world. I have some sense of control right now. I know it’s an illusion.

Back in the day, in the long hallways at O’Hare Airport there was an otherworldly voice piped in above the people-mover conveyor belts. “Keep walking … Keep walking” the voice repeated. As I would reach the end of a stretch of conveyor belt, I would attempt to hop off while somewhat graciously maintaining my stride. Then I’d walked a bit to the next belt and leap on for another ride.

It’s the only way to keep going.


Not Poetry

Here’s my poem for today:


The neurosurgeon called me two minutes early

for a three minute phone call

to tell me Mark needs a fourth surgery

And now I want a fifth of vodka.

Here’s the thing. I don’t actually want a fifth of vodka. I liked the idea of finding something for a five. I couldn’t think of anything else.

Then I shared my poem with Alma, who told me that this would be Mark’s sixth surgery, in their counting.

Adam, Alma’s boyfriend, suggested the first lines could be, The neurosurgeon called me one day/two minutes early.

That’s a good suggestion, right there.

Perhaps this entire post can be one line at a time.

Like a breath in and out.

Today I had Mark at home.

Soon they will take him away from me again.

In.

Out.

Together.

Apart.

Breathe in.

And out.

And in.

Again.

1st Anniversary

It just occurred to us that our anniversary is today. Or maybe tomorrow. We can’t remember. Anyway, Happy Anniversary, Mark! You keep me young. And old. Which is pretty appropriate. I’m cool with it. Also, check it out. One year ago. Wow, what chemo and radiation does to a body. Really, really stunning. In 2021, Mark may have less than 100% of his skull, but he’s also cancer free and has gained back some years.

Life, so full of tradeoffs.

I think we are currently coming out ahead.

Tinderbox

On Valentine’s Day, I decided to interview Mark. I looked up lists of questions you might ask your parent, or your grandparent. I didn’t know exactly what I was aiming for. Posterity? Connection? Understanding? I sifted through the options and picked out a few dozen. Over the course of the day, I sat next to him and asked him questions, recording the answers.

It was disappointing, largely. His remembrances were brief. His visioning is limited.

Perhaps, I thought, my idea of him “visiting,” and my expectations, needs to be refined. For me. Again.

Mark is six weeks post-surgery. They didn’t dig into his brain at all, and so while the surgery was significant and involved his head, he came out of it quickly and remains oriented every day. You know, as much as any of us in these pandemic-days. He knows the day of the week and the month and year. He knows the presidential scepter passed hands. He knows he has retired, and he’s accepted that the beaten-down old business shirts he still had from the 1980’s could go to Goodwill. (Sorry, Goodwill.) He’s tolerated the three antibiotics quite well, and they appear to be working. His weekly bloodwork shows reduced infection and reduced inflammation. PICC line is NBD now that we’ve gotten used to it. All systems go.

For me, in fact, Mark is so present that the finer detail of what it means for the big bad words to be in our daily lives is more important to understand. Encephalomalacia. Anhedonia. Osteomyelitis.

I study Mark every day. I watch him. I look up things. I am still worried.

He is here, and yet not completely himself. He is tired. He is either sleeping or lying down for about 18 hours a day. When he’s not laying down, he has three main activities: sitting and staring, eating ramen, working on a puzzle. Oh, and if it’s Sunday, reading the paper. Four main activities. For all his lethargy, he is still alarmingly unpredictable. This week’s excitement included him standing up from the couch suddenly one morning and declaring, “I’m going to go cut the limb off that tree.” In the spectacular wintery-winter we’re having, there’s six inches of snow on the ground. Mark weighs about four pounds, insists on wearing shoes that have no tread, and is cold all the time. If I ask him if he wants to go to the mall to take a walk, he usually says no because “it’s too cold to walk from the car into the mall.” Keep in mind we rock the best part of this whole lousy cancer process, the coveted “Disability Parking Placard.” And believe me, we use it.

And yet, his brain pulls these tricks occasionally. Focused on this task, Mark put on a jacket and hat. I hovered in the living room uncertainly while he rooted around in the garage. I have to mother him, I have to parent him, but when he’s this present, he’s aware enough to resist it. He emerged from the garage not with a small saw or loppers, which is what I expected, but with the giant tree pruner pole saw. A tall stick with a string that misbehaves and tries to trip you, with a toothed scythe at the end. He dragged it out the front door and onto the porch. I followed him into the front yard.

“What do you want?” he asked, glancing over at me. “I came out to see if you needed help,” I tried, not convincingly. “What I need is for you to not follow me,” he replied. I went back inside and watched from the window. Mark looked at the maple tree in his sight line for about one minute, then dragged the pole saw back through the front door. We live in the split level house built back during the Brady Bunch era, and the foyer holds approximately one person at a time. Matthew and I scrambled down to make sure the string dragging behind didn’t trip him and that the saw didn’t pierce through the screen door while we also didn’t interfere with Mark’s maneuvering down the steps to the garage.

“What happened?” I asked after he came back up.

“It didn’t look like what I thought it would,” he summarized.

I didn’t ask him any more questions.

When I texted Kim about it, she thought maybe I could have distracted him with an inside task. “I had!” I said. That morning, sitting next to each other on the couch as we do every morning drinking coffee, I had suggested he could help me count how many times the snow plow made a pass at our street.

I guess that didn’t work.

Sometimes little tasks like that do. For example, I told him two hours ago that I was going to start making dinner at 4pm. He has been busy eyeing the clock since. He just told me I was late getting started.

I continue to ask the internet for help. For my religious friends, I know prayer is a deep comfort and helpful. It is a comfort and helpful for me, too. Also I hope that God is up on social media, because it’s a much more rapid and clear response. Not that I’m not willing to go into the wilderness for forty days. That would be great, if God would send a babysitter for Mark and his kids. I’ll pack my gear right quick. Short of that, yet, I joined yet another facebook group today, the Osteomyelitis Support Group.

If you want to feel better about whatever you are not feeling good about in your life, join a support group. Someone always has it a lot worse than you. Actually, many many people. In my epilepsy group, people celebrate their tiny little adorable babies being one-month seizure-free. Through my SNUC group, I met a woman, who I now consider a friend, who is asking for prayers because her husband has a new lump on his head. In the Early-Onset Alzheimer’s group, people are agonizing about keeping their spouses at home or putting them in assisted living. While here I am, with a mostly fine guy, sitting on the couch next to me. Yes, he has a PICC line, and he needs to eat 100 hamburgers to gain more weight, and he really should not have tried going for a run two days ago, and he doesn’t show much interest in the world around him. Still, he’s stable.

Stable.

That’s our metric.

Today.

Through the osteomyelitis group, I have learned that this is a tough disease. Heck, I’ve learned it’s a disease. And a rare one, at that. I’ve learned that in Mark’s case, it’s a staph infection. I’ve learned that for many people, it’s chronic. It’s good it’s not MRSA. I already knew that. But it’s like, really, really good. I submitted the only post I saw about a skull. Other people are losing fingers and toes and arms. Toes are important. They change a life, a lack of a toe.

Is it helpful for me to read this stuff? Someone reading my writing for sure is asking this. Well yes, at times, it is. Probably not at 5am, which is when the osteomyelitis group accepted my request today, admitting me to their ranks. Not a great time to watch a 10 minute video overview of the situation, perhaps. But I do better with knowing, I do believe.

Because, here we are, three days away from an MRI that should have happened last week, except I cancelled because the weather called for ice. I have been watching Mark’s forehead for the last six weeks. Red, not red, red, not red. Every day, throughout the day. You’d think it would be easy to discern red from not red. Concerning from not concerning. It is not. Last week on Monday, I watched the weather, watched Mark’s forehead, and decided my risk assessment erred on road safety over learning — that exact day — if he was cured of this infection.

Besides, his IV antibiotics weren’t done yet. They are done this Tuesday. So.

I have become friends with Mark’s home health nurse, Carolyn. She is one of those amazing people who goes above and beyond. She comes once a week, but sometimes she texts me to see how Mark is doing mid-week. Sometimes, after I tell her, I get the magical, unnecessary, unexpected, and greatly appreciated text: “And how are you doing?”

Home health nurses. Who knew.

Carolyn tells me that symptoms or not (fever, red spot, etc.), the MRI could show infection in the bone. I have learned that there are only two options if the infection is present: more IV antibiotics or surgery. Or both. Three options.

The problem is it’s a skull. I get that losing any part of your body is something to adjust to, and it’s major.

You only have so much of your head to give. I really, really do not want Mark to have to have more surgery. I don’t want it for him, or for the kids, or for me, or for us. None of the things.

After the tree-not-trimmed episode, I checked in with Mark about his eyesight. I was trying to understand what had happened that he thought there was something to trim, and then not. “When you look at me, what do you see?” I asked. He took turns testing his eyes. His left eye: good. He looked at me, opening and closing his right eye over and over. Finally, he said, “You look black and white. And kind of fuzzy. And dark.”

Meanwhile, Michael, Matthew and I live in the house with Mark. In painful full color around him.

Did you ever build a fire? Box method? Teepee? Either one works. Pick your preference. Tinder, kindling, wood. Ignition. Sometimes the whole thing feels kind of precarious. I’m not always sure it’s going to work. When it does, it’s a moment of absolute joy. If I’m cold, it’s a moment of great relief.

Sometimes, to me, Mark’s situation feels like a tinderbox.

Whether igniting is good or not good depends on how you structure your metaphor.

At night, I sleep with my head on Mark’s chest. His heartbeat is continuous, and it’s incredibly fast. “It’s 90 bpm,” Carolyn clocks every visit.

At night, from his heart to his skin to my ear, this rhythm seems insistent, frantic.

We had a Zoom call with Mark’s siblings a few nights ago, for his brother’s birthday. Mark has a wonderful family, and I was glad for the opportunity to connect. The next day, I asked Mark how it was for him. “I’d rather have had a normal night,” he said. Our normal night of course being dinner, news, Jeopardy, Wheel of Fortune, bed. Like it’s a prescription from a doctor, it’s unvarying. “Well tonight should be a normal night,” I replied. “I wish you hadn’t said that,” he responded. “Why?” I asked. “Because now it’s less likely to be normal,” he replied. I paused, trying to assess. “I don’t have that kind of power, just using my words,” I said. “Yes you do,” he replied. Pause. “Do you?” I asked. “Yes,” Mark said.

The year of magical thinking, I thought, thinking of Joan Didion.

Mark loves his family. But this is how much we have to live in the moment. Encephalomalacia. Anhedonia. That’s how much hope, let alone future, is not a part of what makes our lives run.

“You can’t hope,” I observed. Yes, he replied.

“Well, let’s just stick with the moment we are in.”

Yes, he said

Okay, I said.

Here we are. Right on the edge.

Valentine

When you drive your husband to the mall, at his request, for his errand. And you worry about him walking safely from the car to the door. And you worry about the Covid germs inside, not for you but for him. And you worry about his safety going up the escalator. And he stops you in front of the Hallmark store and says, where should I meet you? And you say, umm, I will be right here. And five minutes later he comes out with a tiny bag with a tiny heart shaped box of candy and a card hidden not-at-all discreetly in a plastic bag. It’s the thought. And there’s a whole lot of them