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.

“Now, the rest of the story”

We are both in shock. The PET, MRI, and CT scans over the past few days all show the same thing: “no cancer present.” I had to hear the doctor say it directly, clearly. “So are you saying that Mark is cancer free?” My voice had notched up half an octave and sounded loud in my head. “Yes,” the doctor said, “Mark is cancer free.” All the metaphors poured into my head at once. The mountain was climbed. The load was lifted. The race was run. And then quickly it all flipped. We climbed the mountain. We carried the load. We ran the race. And then I immediately grasped that this was true for us together, and for each of us as individuals, and for the whole community that has sustained us through these terrible, long months. Mark worked hard; I worked hard; many people worked hard in so many different ways to help us make it through.

The weight has been lifted. We can rest. I rolled Mark out of the doctor’s office, into a bright grey spring day. We quietly rode home, lost in our own thoughts. It needed to sink in. The journey — this part of the journey — was done.

Mark has a long way to recover still. Surprisingly, he’s hovering at only 129 lbs. He’s keeping the feeding tube for now. He needs to get stronger. He’s still tippy; the nurse practitioner tells us that that may or may not resolve as his body is still recovering from the radiation. Some side effects are immediate, some can come even a year or two after radiation. We have to wait and see. In six weeks, Mark will have a check up. In three months, he’ll have another set of scans. He will continue to be watched closely. But for now, we can breathe.

Last night, we sat on the couch, our new Pandemic Puppy using our legs as a jungle gym. We just kept looking at each other. We raised a glass of champagne. It still didn’t feel real.

“You don’t have cancer,” I said, testing the words out yet again. “You’re a survivor.” Pause.

“Yep,” Mark said. Pause.

“What’s next?” I asked. Pause.

“Now,” Mark said slowly, “the rest of the story.”

Indeed.

Always Tomorrow

We are in the middle of Scan Week. Mark had an MRI, PET, and tomorrow is CT. With the new virus protocols, Bobby’s had 50/50 success in getting into hospitals with Mark. I’m taking Mark tomorrow, as this last scan is followed by appointments with radiation oncology and Mark’s main oncologist. In other words, this last scan may be followed by news. I’ve talked to the scheduling nurse three times over the past week, and each time she assures me my name is on a list that will allow me to stay with Mark. Have you seen Bobby? If he couldn’t get in, I’m not assuming whoever is working the door tomorrow will let me in. I’m bringing a book and a snack, and planning for the potential for a nap in my car to bide my time until he emerges.

Mark says he is worried, but not anxious. I told him that I’m not worried or anxious, because I’m assuming that we will come away only with partial information tomorrow. No matter what I can imagine they’ll say, I don’t think we’ll know everything. The best case scenario — no cancer present — would mean a waiting period until the next scan that will offer the same potential for fear, worry and anxiety. The worst case scenario — cancer present — likely would mean more appointments and discussions and treatment options. When has Mark’s cancer ever been black and white? When Mark and I look directly at the reality of his situation, what we have learned to expect is gray area.

Perhaps the biggest surprise tomorrow would be if it’s actually not.

Reading Man

I’ve been swallowed up by learning how to Zoom teach while multi-tasking in a house with three kids and one Mark. It’s been hard to catch my breath, and when I feel compelled to write, my thoughts jump about like firecrackers in my head. I can’t settle on one topic. Mark’s health, our quarantine lifestyle, having the kids home all the time — two of whom are old enough to technically be adults yet young enough that I sometimes have to remind them they are not independent adults.

Mark. All things start and end with how Mark is doing. Mark is doing so very well. He reads! Every Sunday, we get the New York Times. About a month ago, he picked up his favorite starting place, the Sunday Review, put on his glasses, and started to read. “You’re going to read?” I said. I hadn’t seen him choose to read since last July. “Yes,” he said. Like it was nothing. And while my go-to is enthusiastic celebration of anything I can grasp as good, I met Mark where he was. Which I have learned to do, over the years with him. “Oh, okay. Cool.” And I picked up the Sunday Style section, my weekly entry into the paper, and we sat quietly drinking coffee and reading.

How did we get from Mark being a fairly non-responsive, non-interactive cancer patient, to this? One day at a time. After his radiation ended, he was a physical wreck. His face and neck were more lizard-like than not, he could not think straight, could not remember things, or hear, or see well. He couldn’t breath through his nose or mouth without making whistling and wheezing sounds. His mouth was too dry to swallow. The feeding tube kept him alive. Bobby carefully led him through any exercise that Mark could tolerate. I supervised Mark’s every move, from bed to bathroom to couch and back to bed.

Over the last month and a half, Mark’s slowly been getting stronger. His skin has healed. His face looks fuller. He uses a walker in the house. He’s got a problem with being a “little tippy” as I refer to it. Apparently, in our necks we have these cool nerve endings called barorecptors that send important messages to tell our body to not listen to gravity when we go from sitting to standing up, and to instead keep the blood pressure nice and stable in our skull. When you radiate those, they don’t work so well. So sometimes Mark can stand without incidence, sometimes he’s tippy, and sometimes he blacks out and topples right over. Note the gash on his forehead in the picture. That’s from a night last week when he sat up on the edge of the bed in the middle of the night, and before I could catch him he blacked out and fell off the bed, whacking his head on the bedstand. He woke right up. “Did I hit my head?” he asked. Blood streaming down his face. Um, yeah buddy, you did.

While Mark’s still skinny, too skinny, his weight is at worst stable and at best slowly creeping up. We have no house scale, so I judge by whether I can make a circle around his wrist with my thumb and pointer finger. I used to be able to, no problem. Now, I have to stretch. Mark still has his feeding tube, and we use it daily to supplement his calorie intake. It will have to be removed surgically at some point. It doesn’t bother him, and it doesn’t bother me, so it’s no rush.

I’ve felt very fortunate that the covid crisis has come at this point in Mark’s treatment. He has successfully avoided going to the hospital at all during the quarantine. Aside from the root canal he had to have today (poor guy), he has basically not left the house. We’re doing the full-on quarantine. The boys are not allowed to get together with friends. We don’t leave the house except to take a walk or to get groceries. He needed home health to come in for a couple weeks, for bloodwork and hydration, but that didn’t last long because eventually every time they stuck him they’d blow a vein. (And yes, it’s difficult to teach while hearing from the living room the nurse say, over and over, “I’m sorry! Is it okay if I try one more time?” Let alone the time that she didn’t have the right cap to switch from blood draw to IV, and Mark started bleeding all over the couch….but that’s a story for another day.)

Next week, however, is The Week. Scan Week. Three different hospitals, two scans, two doctor appointments. PET and CT scans will tell us what the chemo and radiation have accomplished. The radiation oncologist and Mark’s main oncologist will tell us what next steps may be. At one point, there was discussion of a surgery following the chem and radiation, depending on the success of those treatments. There continues to be a neurosurgeon and an ENT surgeon on Mark’s case as well. My biggest concern at the moment is making sure I can get into the appointments with Mark. The scheduling nurse told me to put Mark in a wheelchair whether he’s feeling like he needs it that morning or not, and tell the hospital security point that he’s mentally incapacitated and I have to accompany him. That sounds a little stressful to me. Him going in alone? I can’t imagine that would be a great idea.

We have no idea what life will look like in a week. We have no idea if covid will change any plans they may have had for Mark. In some ways, all the challenges that we’ve faced during Mark’s illness have set us up perfectly for all the uncertainty and fear that covid has brought. We were already afraid. We already knew, profoundly, that you can try to do everything “right” and still things may not go your way. We already mostly stayed home, and were in a constant state of alert about Mark’s health. We’ve had to do more, always more, but it’s alterations to a pattern of vigilance that had already been put in place.

Mark continues to be stoic. He will always be stoic. I ask him how he feels about the scans coming up, and he says, “Fine. There’s nothing I can do about it. It’s there or it’s not.” But lately at dinner, a few times in the past week, he takes his seat, makes the sign of the cross that he knows so well from his Catholic youth, closes his eyes for a few moments, and then crosses himself again. He’s in the foxhole, for sure. Aren’t we all right now?