“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.”


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.