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. 

I’m Not Panicking, You Are

This, by the way, is what the panic buttons look like at UPMC. 

Yesterday Mark had pre-op appointments at Presby and Montifiore hospitals. It was a long day of waiting. Sometimes, when left to my own devices in exam rooms, I do some friendly, harm-free exploring. What is in that drawer? Are the cabinets really locked? What can I learn about the function of a device by reading the instructions hanging on it?

So yesterday, a box like the one pictured (which I took in an ER a few days later, but that is a story for another day) was right behind our chairs in an exam room. The anesthesiology PA left the room, and I poked at it. And then I tugged at it. And then I looked under it to see if something would connect to it. And then I stuck my finger in the top of it to see what was in the bottom of the hole there. To be fair to myself, let me add that Mark stuck his finger in there, too. And then 10 minutes later there was a loud knocking at the door and “UPMC Police!” as two uniformed cops entered. “Someone hit the panic button. Is everything okay?”

We were very confused.

The PA, when he came back, asked how long it had taken for the cops to show up. When I told him, he said he’d have been pretty beaten up by then. He also said the only other person to ever hit that button was a child. Which I loved.

Anyway, the point is that the button is apparently for the providers, not for the patients. That is why it is a secret.

UNTIL NOW.

Hospital Cafeteria Yelp Reviews

My friend Kim suggested that I write reviews of hospital cafeterias, as I’ve been to many in the past year. Here are my Yelp reviews: AGH: kinda busted down, but in a charming way. Basement feel but access to a patio and courtyard is a plus. The endless loop of bird screeches to scare off… other birds …. is kind of annoying. MD Anderson: sausage gravy at every station. I have nothing more to say. I love the South. Children’s: bright and friendly. Could be larger, but bonus points for kiddie meals. Starbucks on the first floor has a little playhouse you can fit into to eat your bacon gouda sandwich and drink your latte. In case you were wondering. Montifiore: institutional and uninspired, and now with each table having only one chair and all chairs facing forward, it feels like you’re waiting for a nun to come by to rap your knuckles. Hillman: what it lacks in size, it makes up for with the friendliest staff. I go there just to be called “Honey”and “Love.” Yes, thank you, this Baby will definitely try to have a blessed day. Shadyside: There’s a few little clusters of comfy chairs and side tables where you can eat and not feel like you are in a cafeteria. If you don’t look up, that is. Take a load off, watch some Netflix, and eat a soft pretzel. Presby: I have discovered my favorite. It’s bright and modern, tall ceilings, lots of nooks and crannies if you want to hide out. You can eavesdrop easily on the residents complaining about doctors and patients while noshing on crunchy fries. Plus, they have fresh sushi.

The Interrogation

“Is the surgery dangerous?” Matthew asked. Mark had gone for a run/walk around the block, and I had pulled Matthew and Michael off their respective devices for a talk in the living room about Mark’s upcoming surgery. Ben was at work.

“Well,” I said slowly, “you will commonly hear people say that all surgery is to be taken seriously.” I was rapidly trying to decide where the line was between honest and too scary when talking to a 15 year old and an almost-20 year old about their dad’s latest health twist.

“Dad says it’s a minor surgery,” Michael added, although I knew that he did not necessarily believe this. As Mark is excellent at denial, the question about whether or not Mark believes it goes unanswered. The other day he told my parents, “the first surgery didn’t take too long to recover from, so this one should be okay.” My mom, who excels at shooting me knowing looks, shot me a good one.

“Because of the part of his body they are working on, it could be more complicated,” I settled on. “The doctors said that your dad should be back to himself more quickly this time.” I didn’t add what my friend Kim had said when I told her that. “So, like, seven months instead of seven and a half?” she said, laughing. Kim knows how to make me laugh, which I greatly appreciate. A couple days ago, Mark told a doctor that he started to lose his hearing after the surgery, in December. After the doctor left the examination room, I said, “When do you think your surgery was?” “December,” Mark replied. “Actually,” I said, “it was in August.” “Huh,” he said. “I guess I’m confused because I don’t really remember September, October or December.” “How about November,” I said. “Do you remember November?” “Oh,” Mark laughed, “not that one, either.”

The surgery is set for August 3rd. I’ve talked to everyone I need to talk to now to trust that this a) has to happen; b) has to happen now. The oncologist, Dr. Z, and I spoke by phone on Thursday. I was alone in my office, pacing back and forth with a wild nervous energy as he confirmed that he agreed with the decision to do the surgery, and said that he was “hopeful” that Mark would get back to baseline more quickly than after the last surgery. Dr. Z added that a benefit of the surgery is that the surgeons can “interrogate the tissue” while they are in there. I imagined this as a surgical courtroom drama. Surgeon to sinus tissue: “Do you or do you not have a history of dividing uncontrollably?” “Had you or had you not been given express permission to occupy space in said person’s head?”

The least of my worries has been Covid as I have kept our little pup-tent of a life propped up by aluminum pegs and string. We’ve done all we reasonably can do to stay home, stay masked, stay socially distant. We’ve reordered our lives to make room for the pandemic, in the way that you reorder your life if you have to live with a grizzly bear in the woods. The bear is in charge, and you navigate accordingly. But as school approaches and I am inundated with social media and news stories about the free-for-all of schools planning, layered on with the fears of teachers and parents, it’s all I can do to keep our little shelter standing. I am fully functional but my personal “tell” for my level of stress is that I’ve stopped riding my bike and I’m instead walking. It’s an instinct. I need to go slower. I need to have my feet firmly on the ground. And I need to keep moving.

One of my teacher friends, as I was text-fretting over what kind of PPE to wear at school, seemed strangely calm to me. “WHY AREN’T YOU CONCERNED ABOUT THIS?” I texted. “Aka, should I chill out?” He replied, “This is arranging chairs on the Titanic.”

Really, what is one to do. My cousin, a therapist, did a Zoom exercise with me in which she repeated the mantra, “You can be in reasonable control of what it is reasonable to be in control of.” Despite the fact that I got a little distracted by the thought that I could be in control of that dangling preposition, the exercise was quite relaxing. It made sense. Of course. Calm down.

This morning, I needed to get the driveway gussied up for a socially distant, masked family breakfast gathering. My brother and sister-in-law were in from Texas, and my parents, niece and wife and baby were coming over. I sat inside with Mark and had coffee, and then I started to get up to, as I had said, “execute this mission with military-style precision.” Sometimes I just say random crap to entertain myself, as Mark often cannot hear me and I’m often left too much in my own head. “What?” he said. “I’m going to fuss and putz,” I replied. “Fry the pets?” he tried.

And then I sighed.

And then I laughed.

No, no, I’m not going to fry the pets today. Today, I’m going to keep moving forward.

Unless the Creek Rises

A few evenings ago, Mark and I sat quietly on the front porch, watching the world go by. The world being not a lot, in our quiet neighborhood. The wind stirred the leaves on the trees. A goldfinch swooped between the purple cone flowers and the white pine tree. A young girl walked down the street alone, carrying a swim towel and holding a pair of goggles.

“That’s a warm breeze,” I said. Mark said, “It is.” Sometimes, we remind me of Ma and Pa Ingalls out on the prairie, silent after a long day, waiting on night to fall.

Mark had had a follow-up appointment with an ENT surgeon earlier in the day. We had talked about each of our understandings of what had transpired, and at some point I used the present tense to refer to Mark’s cancer. “Had,” he said. “I had cancer. Unless the creek rises again.”

Mark has a quiet and quick wit. Layer that onto his quirkiness, and he’s gently entertaining to be around. In the past month, his himness has returned more and more. He is noticing the world around him. He is asking questions. “It’s nice to have you back,” I said. “Where have I been?” he replied. “I’m not sure,” I said, “but not here.”

Last Friday night, he said, “What’s on tap for the weekend?” That’s the first time I’ve heard him think ahead out loud, wonder, potentially plan. “Do you want to go out to dinner tomorrow night?” he asked. “Sure!” I said, not wanting to break the magic of the moment with a Covid-concern. Late in the afternoon the next day, I asked Mark if he remembered that he’d asked me to go to out to dinner with him that night. “No,” he said, “did I?” Well, it’s the thought that counts, even if the thought isn’t retained. And especially if the thought is actually ill-advised in the time of Covid.

Progressively since late spring, Mark has been doing incredibly well across many metrics, with the exception of his weight which is stable but low (127 lbs). He’s been out running (1/3rd of a mile) and walking (another mile) most days, and that’s been amazing to see. It’s also been a major adjustment for me to learn to let go again, to treat him like an independent adult and not like a dependent. The first few times he left the house to go out walking/running alone, I ended up driving around the block looking for him, like the dog had gotten loose. I am getting better at trusting that he will be okay, but it’s taken a lot to absorb that the guy-who-could-not-walk-room-to-room safely has become the-guy-who-waters-the-garden-alone. It probably doesn’t sound like much, but it for sure has been.

Mark’s feeding tube was removed just a couple weeks ago, which was not my favorite surprise procedure to witness. I had taken him to the Survivorship Clinic for head and neck cancer. The doctor, who we had never met before, surprised us by saying he thought it could go. When the feeding tube was placed in late January, I told the surgeon that I was worried Mark may try to pull it out on his own. She told me it’s very hard to remove, and it would be removed surgically. It therefore was a big surprise to have a doctor pull it out like a cork in an office visit, while casually explaining that it could take a number of days to seal up so to anticipate that when Mark drank something, like coffee, it might leak out of the hole.

I hadn’t been quite that close to the line between hysterically laughing and crying in a while.

On Tuesday, Mark had a follow-up appointment with the ENT surgeon who examined him last fall. Two residents crowded into the room with us. I adjusted my position so I could watch the video feed as the ENT scoped Mark’s nose. “THIS is what happens with severe radiation,” he said to the residents as he tunneled upwards, past things I will spare you from. Mark mostly can’t breathe out of his nose, and apparently that is due to two things: scar tissue and the fact that while the healthy human head makes one to two liters of saliva a day, the radiated human head makes about a half cup. (Yes, forever.) So things just aren’t flowing well. The ENT continued his journey up, and into view came the white plastic disk that is at the end of the line. This prosthetic is what seals the hole made by the cancer where it moved from his sinuses into his skull. This prosthetic bothers the ENT; it should be enclosed in Mark’s tissue and is instead exposed, creating a potential for infection. The ENT wanted to consult with neurosurgery.

Yesterday, I got a call from the ENT surgeon. He and the neurosurgeon want to do one surgery, together, in which they will clean out the scar tissue from Mark’s sinuses, remove the prosthetic at his skull base and graft tissue in its place. The skull work will be done by reopening his head where the original surgery last August took place. They estimate a six hour surgery, and would like to do it within the month.

I’m a tiny bit freaked out. I’ve liked having Mark back. It’s taken a lot to get him here. I’m not sure, but I’d think if you reopen his “forehead door” as my friend Kim referred to it, that his brain may prefer a little R & R period afterwards. When they installed his forehead door, the recovery period was very very long. This will be less difficult recovery, for sure, because the work is removing and patching a little thing, not a big thing like last time. And yet, it’s a surgery, a big one, and there will be knives and stitches and stints and brackets and nights where he’s there and, due to Covid, I will most definitely not be. They’ll biopsy the tissue they get, because why not, and so there’s that information to think about being at the other end of this as well.

I’d like to end with some swoop of hopefulness and positivity, or at least a dash of humor. But really, folks, this is a lot. Send your good vibes and prayers and thoughts our way. We’re in for a time again.

Survivorship

Merriam Webster: The state or condition of being a survivor; survival

Macmillon Dictionary: Sorry, no search result for ‘survivorship.’

Oxford English Dictionary: Get your annual subscription for just $90!

After all the “all clear!” moments have passed, we are left with surviving. Mark has been referred to the “survivorship clinic” for head and neck cancer. It is not clear what this means, because he’s six weeks clear and six weeks from the next scans. We know it means this: he’s surviving. He has side effects, and he needs to cope with them. Dental, vision, hearing, nutrition, swallowing. Some could improve, some are left to manage longterm.

While all eyes may be on Mark, I’ll say that it’s not easy for me, either. I’ve been watching “Alone,” a History channel gambit at the reality TV genre, in which individuals try to survive alone in the wilderness with their ample skills matched with their ample willpower. From what I’ve seen so far, they mostly end up starving and giving up within three months.

I can tell you this: Mark and I are surviving. I can also tell you that the current world we live in feels so little like the world we’ve come through. Starting with this surprising observation: visiting Mark in the various ICU and hospital and skilled and rehab and senior living places he’s been in the last eleven months always included a level of stress, of course, but also always included a level of community. I never, ever felt alone, even while I often felt scared. There were friends and family with me so much of the time. There were total strangers in waiting rooms who, like me, wanted and needed to talk. There were doctors and nurses and other practitioners who had a few moments or more to give to the problem set before us: Mark’s heath.

Last week, I went with Mark to a standing appointment with his oncologist. At the entrance, after measuring our temperatures as the only check of our health, they let us both in. They did not, however, let me into his lab draw. They pointed to an atrium and promised me they’d find me there. “How will Mark know where I am?” I said. “We will find you,” they replied. And so I went and got a coffee and sat in the atrium, watching videos on my phone and hoping they were right and they’d find me. Less than six months ago, I would have been at his side, interacting with him and the nursing staff throughout the entire appointment. I would have gleaned new information about his health; I would have asked questions that would have helped me gain a little bit more knowledge about the human body. Alone, back in the atrium, two hours later Mark’s oncologist’s nurse practitioner, Avi, came out to report how the visit went. And then we went and found Mark, ready to go home, together.

Now, if you’ve not been following along through this journey, this all might seem insignificant. However, for the past year, I’ve been attending to every detail of Mark’s life, as he has not been able to. The idea of him being alone in any setting has been incomprehensible, because Mark has not been able to comprehend any setting he’s been in for most of the past year. Me hearing how he describes his health to medical personnel has been valuable, as I learn what he is experiencing and I can correct things he is not conveying accurately.

The time I’ve spent in the hospital with Mark over the past year — whether he’s been inpatient or outpatient — has been significant. It also has not been lonely very often. Hospitals have a sense of community about them. There’s an overall spirit of “we can do this together” that permeates the staff and the visiting families. You have strangely beneficially conversations in line in the cafeteria. Someone says something randomly nice to you in the elevator. The nurse lingers to make sure you understand some part of your loved one’s care. Layer a mask and Covid-19 fear on all that, and the hospital has become another place of isolation and sadness. Families waiting in the atrium for a practitioner to emerge sit in silence, masks and ear buds and screens all a barrier to connection as we wait.

It is impossible for me to imagine how this past eleven months would have played out in the current reality of today. Last August, when Mark was in brain surgery, I had a crowd — parents, friends, sisters-in-law and niece — come and stay with me in the waiting room. They brought snacks and games and wine and distractions. They fed me and made jokes and sat quietly and encouraged me to nap. Strangers dwindled out and my support network thinned but never disappeared. I can’t image — I cannot imagine — what it would have been like to not be surrounded by love and support while Mark’s skull was literally being removed and a tumor excised.

I cannot even comprehend how our world has changed. I can’t comprehend how what I went through happened, and how I make it through everyday.

I do. Mark does. We do. It is not easy. It’s not the hardest it could be. But it is hard. Somehow, we survive.

Tomorrow Mark

Just another summer morning? Maybe, but in this photo I see something new. It’s Tomorrow Mark. Tomorrow Mark looks ahead, because there is an ahead. He wears shorts because he finally isn’t freezing all the time. He reads a bulb catalog because autumn will come. And then after it, another spring.

One month ago …

… I never would have imagined that I’d be going for a bike ride and Mark would be planting tomatoes. In the middle of waiting for Mark’s post-treatment scans, I had added a layer of Covid-fear to my substantial layers of Mark-fears. To the boys’ nightly chores, I had added wiping down household surfaces. I forbid them from physically socializing with anyone. I asked Bobby to stop coming for now because I wanted to limit any potential exposure of Mark to the virus.

Then Mark’s scans came back clear. When I announced the good news, one of my colleagues, wisely, asked me if Mark being in remission changed the day-to-day of our lives very much. No, I said. He still has significant work to do to recover from the scorched-earth tactic they took to kill the cancer. There are side effects of the radiation that appeared at once, and we are warned that there are side effects that can take years to emerge. And yet a month later, our day-to-day is changing. Mark has stopped using his walker. His balance is not perfect, but it’s improved enough that it seems reasonable that he is testing his ability to navigate without assistance. Instead of me doing his daily feedings through his feeding tube, he’s doing it himself. He fights through the vision problems and reads the whole Sunday New York Times. His hearing has actually been getting worse, and Mark agreed to an appointment to get evaluated for hearing aids. He is talking about wanting to go back to work at some point.

And listen, I was not thrilled today when he got up on that wall because that’s where he always has planted our tomatoes. I wasn’t thrilled that the Pandemic Puppy was underfoot, or that Mark was wearing fleece when it was 75 degrees out. I immediately pictured him tipping head first over the edge of the wall, and then I quickly tried to quiet my noisy mind. I’ve learned that Mark needs to test his own limits, and I know I need to back off and let him see what he can do. I didn’t say a word when he slipped on the slope and ended up on his tush. I stayed near him when he started to retch from his body reacting to the sudden uptick of physical demand. He was outside working for about 15 minutes, and then he was on the couch panting from exhaustion, tears leaking out of his eyes as he fought back wave after wave of nausea. But there’s six tomato plants tucked into the garden. He did it. It was good.

A month ago, I didn’t know if Mark would ever reach a stage of independence such that I’d feel comfortable leaving for an hour here or there. A few weeks ago, I started trying out leaving him with the boys while I took walks in the neighborhood, and then hikes in the local park. At first I had the boys stay in the living room with him, because I have absolutely observed that Mark waits until I am out of sight to try things that may be ill-advised. I was on a Zoom call last week when my phone app for the front door camera alerted me to a sound in the driveway. I opened the app and watched as Mark went back and forth to the curb to take out the recycling. No walker, no railings or walls to balance him. Just a vast sea of asphalt for him to fall and hit his head on. Sigh. I also know that life must move forward for all of us. While we can, we need to carefully release the sense of constant vigilance and re-engage in things that breathe life into life.

Last week I hauled out my bike, grabbed a couple clementines, put on my favorite biking playlist, and hit the trail. I felt super weak compared to how strong I had ultimately gotten through training last year for the Pittsburgh to DC ride. And you know what? It didn’t matter. The wind, the air, the sun, the music. It felt glorious.

Slowly, slowly, we are figuring out our own new normal. Or maybe we have figured it out. Do what you can, every day. Be okay if it doesn’t work out. If you don’t feel good, be ready to change your plan. Every day can be beautiful in its simplicity. It can be simply beautiful.