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?

Stock Photos

For the past of couple years, this photo frame has hung on our living room wall. Occasionally a guest glances at it, pauses and takes a second look, furrows their brow and says, “are those stock photos?”

Yes, stock photos. In my living room. My easy-breezy explanation is at the ready: they look so happy, those people. I like them. I named one of them.

A few years earlier, I had bought a similar photo montage frame and filled it with pictures that assembled the pieces of my family life and Mark’s family life into a visual whole. Mark and I had come together after entire lifetimes lived, having created families that were as distinct as each leaf on a tree. I had been a family of four, and then after my divorce, three. Mark was a family of five, and then after his wife died, four. We were making a new family of seven. Our families had morphed and changed, a rug pulled out from under each of us, leaving old photos of families smiling in a frozen and lost place in time. I felt compelled to try to knit the pieces of people, place, and time together to make something coherent. A photo foundation to build upon.

I carefully culled photos from each of our lives, taped them into place, and hung the frame on the wall. A few months later, Mark’s oldest son, Michael, bumped into the frame, sending it crashing down the stairs. I practiced deep breathing and not making meaning of this. I promptly bought a replacement frame, and I immediately hung it on the wall until I could find the time to put in our photos.

Time passed, a lot of time passed. The project remained unstarted. Eventually I found it entertaining, and left the frame up because I thought it was funny. And then, as it happens, I grew attached. I would sit on the couch and look at the stock photos. Friends smile in the sun. A quartet accomplish a synchronized leap at sunset. Best friends play under an umbrella. A trio stands victoriously at the top of a mountain.

I had been through a lot of changes over the past decade. The difficult dissolution of a difficult marriage. Raising children along their less-than-seamless paths from youth to adulthood. A new partner, a new neighborhood, new stepchildren, a new role. I had made it through challenges unique to many, and quite unique in their particular combination. Despite this, or maybe because of it, I felt pretty strong. And despite that, I understood and accepted the crystal clear meaning of my holding onto these stock photos of strangers frozen in the undisturbed happiness of wind and water and life. These people required nothing of me, reminded me of nothing, and would never change. I liked that.

When Mark and I came together, I had such a strong desire to have life be comfortable for all of us. For fragments to create a whole. I wanted to fast-track the successful blending of our families, as if by putting photos in proximity could smooth some challenging edges of the meaningful development of a blended family. But as with most things, blending progressed at a pace independent from my desire to have it be so. It took good days and bad days. It took boredom and excitement. It took arguments and apologies. It grew in time, and was strengthened by the trust needed to support each other through the trauma of Mark’s seizures, his confusing changes of personality, his cancer diagnosis and treatment and recovery.

Someday, I will take the time to carefully select photos that represent the family we have become. We now have years of memories, more than could ever be represented in photos filling one frame. For now, my stock photo friends can stay, a reminder that oftentimes, time is exactly what’s most needed to create the next new beautiful thing.

Quiet Storm

At some point, I will have time to write. At some point, I will have energy to write. At this point, I don’t. I am not exhausted in any way familiar to me; this is something new. There’s a toll, some kind of internal cost, to too many scenes of difficulty playing out in front of you. I limit myself to 30 minutes a day of broadcast news, and still, still it feels like too much. I manage my expectations for everyday and still, still I feel drained from the effort. I am overworked and restless, suspended in time and keeping a family moving forward. I am leading the fight against the internal enemy that Mark faces, while Mark battles alone. I am watching the fight against the invisible enemy from a screen, while guarding the five of us in our encampment. Sometimes I feel like I lost a year to Mark’s cancer. Like I’m losing a season to pandemic. I try to remind myself that the year wasn’t lost; it was lived. The season is being lived. I lay me down to sleep at night, thankful for the weight of blankets holding me down, and just breathe.

Boogeyman

I started this post a month ago and then abandoned it as life got busier. A month ago, I wanted to write about how we can be scared of so many things. Some of them are legit, and some lay somewhere closer to absurd. In terms of living with our fears, the legitimacy of fears often is beyond the point. No, the mouse in the pantry is not going to hurt you. Yes, you may have a primal fear of it that is unmovable.

The first thing I did when I started this post was to gather up all those images. When Mark came home on his last day of radiation, the parting gift — the one we knew he’d get as a souvenir — was his radiation mask. For six weeks, five days each week, before the sun came up we’d drive Mark to the hospital and head down into the basement to radiology. We’d sit in chairs arranged nicely into little privacy pods and watch Good Morning America until he was called. The technician would walk carefully beside Mark, keeping a hand behind his back in case he became unsteady on his feet, which he often did. They’d disappear from my view for 10 minutes, and then Mark would be returned to me.

Day to day, the radiation treatments were completely invisible to me. Intellectually, I knew what was happening. They lay Mark on the table, put his mask on, locked it to the table, and began. They were delivering a doozy of a beam of energy right at the tumor, working their way via 3D imaging around the blasted thing, wiping out whatever biological tissue was in its path to get there, clearing a larger swath than needed to make sure the target was eliminated. I never saw any part of this process other than the waiting room.

It took almost four weeks for there to be a notable impact on Mark’s daily living. His skin drying, changing color. His salivary glands useless. His breathing increasingly noisy. Destruction meant potential success. Mark tolerated it without complaint.

When Mark brought the mask home, it took my breath away. I hadn’t imagined it to be so large. I hadn’t imagined the hole in the middle. It was just so…real. And scary. A physical manifestation of the cancer I fear. A physical manifestation of the radiation that in many ways I feared, too.

I dealt with my fear the way I often do — by exploring it. I tried the mask on. Alma tried it on. I took photos of it. I messed around with the photos. I recorded an audio track of Mark’s noisy breathing, and I overlaid it on a video of Alma wearing the mask (very spooky). I understood what I was doing: I was working to disarm the fear by facing it head on. Not everyone does that. I know that. It’s in my instinct to do it, and it works for me.

As I write, I am sitting in bed listening to Mark breath. If he gets quiet, I sometimes will watch to make sure the covers are still rising and falling. I’m up early, because an hour ago I awoke to him walking over to the bathroom rather than using the bedside commode. I watched him get to the bathroom door, start to open it, start to sway and tip as he clutched the door frame. I made it to him just in time to catch him as he fell straight back. I guided him down onto the carpet until it was safe for him to get back up, go to the toilet, and then back to bed.

We all have to figure out how to manage our fears. Meditation apps, yoga, walking for some. Binging on Netflix shows. Praying. Calling friends. Cleaning. Cooking. Avoidance. Learning. There’s no right or wrong to any of it. We all just have to keep doing our best. Finding a way. I think we can.

Golden Rule

I am posting this as someone who’d been casually following coronavirus and then quietly doing some preparing and now like everyone else is getting to the rather worried state.

I am posting this as someone who’s been working so hard to keep Mark alive. Mark is medically very fragile. Yes, he’s doing better. He also weighs about as much as a feather and is still recovering from brutal radiation and chemo treatment.

So hey, check out the data. If you can follow the guidelines that we are all hearing, that would be great. I’d appreciate it. If you need help with ideas for how to enjoy life while self-isolating, I’m pretty much a pro at it now.

https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca

I started back to work…

Mark at Aldi’s today.

….and the time and energy to write disappeared. Here’s a quick update, minus creativity. Mark is home. The amount that he’s changed over the last three weeks is incredible. Three weeks ago, he could not spell the word “world” backwards. Two weeks ago, I watched him lean over to zip up his winter jacket and was amazed to see that he could do it. Today, I watched him write down a note about his breakfast intake, and he correctly remembered the day of the week — Saturday. He is thin and tired and also so much stronger as his body and brain recover from a brutal treatment protocol that seemed, without exaggeration, like it almost killed him.

A fairly comfortable daily pattern has evolved. Bobby arrives by 6:45 every morning and off I go. Bobby rotates through and exercise plan that he creates for Mark everyday: resistance bands, free weights, stairs, balance exercises, mental exercises like playing cards. Bobby exhibits beautiful intuitiveness about when to nudge Mark to do more or back off and let him rest with a “you’re the boss. I’m your friend. I’m not here to hurt you, I’m here to help you.” He makes sure Mark stays hydrated. He gives Mark feedings through his feeding tube as needed, and eats breakfast and lunch alongside Mark. In the afternoons, Bobby stays until a friend or my parents come over, or until I come home. I make dinner for the family. Mark and I watch Jeopardy. I give Mark a feeding through the feeding tube. A “bolus,” it’s called, but Mark somehow can’t hold onto that word and keeps calling it a “botus.” Beverage Of The United States? I set up his meds for the next day, we count his daily calories to see if he’s hit the minimum of 2000 (he’s really good at only hitting 1700-1800), and I go over the next day’s schedule with him, which he writes on a tabletop white board so he can refer to it the next day. I walk him back to the bedroom by 8pm and make sure the bedside commode is clean and that he’s safely in bed. I’m usually not that far behind him in calling it a day.

Mark’s brain is much more online than it’s been since about last June. This is a blessing, of course. It also means that Mark is really experiencing his illness, cognitively, for the first time. I ask him what he’s thinking about as he stares off into the distance, and more often now he’ll say “the possibilities of my life” or “mortality.” He lost his balance on Wednesday and got a little gash over his eye; this super scared him, even though Bobby was right there and caught him on the way down. Mark had been starting to push against the need to have someone with him at all times. But after the fall, Mark didn’t want to leave the house because he was newly alert to how his legs can feel weak and give out at anytime. Let alone the potential for seizures (which he still has periodically). He started using his walker to get to the bathroom or the bedroom or the kitchen.

I have continued to get calls, so many calls, about his care. Nurses, insurance, PT, OT, and speech. Two evenings ago a nurse called to check on him. We went over the equipment we have and don’t have. I thought we had it all: a wheelchair, the bedside commode, a blood pressure guage, feeding tube supplies, pill organizers, a regular standing-only walker and, arriving soon, a walker with a seat. “You don’t have a hospital bed,” she pointed out. Not there yet, I said.

Today, we had our first outing with the wheelchair. Mark wanted to go to Aldi with me; it was his idea to bring the chair. We maneuvered through the store successfully, equipped with a shopping cart, a wheelchair, a just-in-case a vomit bag and a bottle of seizure-stopping medication. A tiny stressful for me as I pushed the loaded cart while he foot-paddled his way down the slight incline to the parked car. We came home and took a long nap.

Mark’s treatments are finished for now. We are in a time period of healing and recovering. His Big Scan will be in mid-April. It will tell us all we need to know, we hope, about the efficacy of the treatment. A fork in the road. Another one.

I woke up early today to drive Matthew to the high school for a speech and debate tournament. Then Mark and I had coffee on the couch while I finished my latest murder mystery novel (I’m in a rut) and he read last week’s NYT Sunday Review, the news so dated after this week’s massive coronavirus scare and the shrinking of the Dem primary pool. I watched him read, stunned that he had the vision, cognitive capacity, and energy to read multiple articles. The changes keep coming, and some days — despite all we’ve been through — I find myself thinking it’s going to just continue to be a steady improvement. Bobby reminds me that this is just like in AA and NA recovery: “Sometimes it’s three steps forward, a half step back, Di.”

Today at breakfast I said to Mark, “how’s your nausea?” “Am I an alligator?” he said, repeating what he thought he had heard. “Did you really think that’s what I asked?” I laughed. “Yes,” he said.

That’s my husband, ya’ll. If you look at the photo, you will see he has taken out his wallet so he can pay. Because that’s the kind of man he is, the guy who wants to take care of me.

What is marriage? What is a partnership? For better or for worse. For richer or for poorer. In sickness and in health.

I’ve got this. I’ve got him.