Let me just start off by saying thank you for checking in. Maybe you’re a friend or family member, maybe you’re a fellow writer or regular blog follower of mine, maybe you just happened to land on this post via Google search. Whoever you are, thank you for taking time to join our journey through eye cancer.

Today was day three in the hospital. It was a good day, as “status quo” as a day in the hospital could be. Seth was in good spirits. The gold bottle cap plaque is still stitched in his eye. The radiation is still working to kill the cancer. The cocktail of pain medications they created for him two nights ago is still working well. Seth’s still eating two apples a day. And Dr. G is fabulously kind and intelligent. Seth lapped the unit three times holding hands with me this afternoon. And he enjoyed an awesome piece of wedding-worthy cake I brought him from Mayo Clinic. Perhaps the worst part of his day was when he admitted he’d be “lonely” when we left the hospital at 7:00 p.m.

But you see, Seth and I have this informal agreement we’ve come to realize over the past 19 3/4 years. When I’m down, he’s usually up. And when he’s down, I’m usually up. With that in mind, let me just say that Seth’s day was good. My day turned from shaky to profoundly holy between 7:30 a.m. and 3:00 p.m.

So for all of you who are curious about the big-picture journey beyond the four walls of Seth’s hospital room, stay with me. I’m about to share more about my day. Although you must know, I’m certain my words won’t do it justice.

Let’s begin, shall we?

I got out of bed a little later than I’d wanted, but still managed to run over to Starbucks for a cup of coffee and scone for Seth before the shuttle came to pick us up. Let me just say, I was fine at this point. But I wasn’t awesome. We’ve been arriving at the hospital by 8:15 a.m. and leaving at 7:00 p.m. I’ve been writing each night after we get back (my choice), which has left me staying up extra late to get in a little quiet time alone before doing it all over again. I haven’t exercised for five days, which is too long without a workout for me. I’ve been sleeping and feeling fine from all indications, but perhaps things have continued to accumulate under the surface without my awareness.

While I was waiting for coffee at Starbucks, I received an email. It humbled me, hurt my heart a bit, and required an immediate response on my part. (Please don’t wonder too long. It’s a private matter and was completely resolved within a few hours in the most heartfelt of ways. I’m only sharing because I believe it was critical to the start and storyline of my day.)

We arrived at the hospital and took the elevator up to Seth’s room. I went right in, and Seth’s parents headed straight for coffee and the waiting room. Seth was still sleeping, so I broke out my laptop and began drafting a heartfelt response to the email I’d received earlier. I had the email completely drafted by the time Seth woke up, but didn’t send it quite yet. I got Seth his coffee and scone. I ordered his breakfast and set up his bed tray so it would be ready when the food was delivered. But Seth noticed right away that something wasn’t right. He questioned without hesitation, “Is something wrong? I can’t see well, but my other senses are making up for my lack of sight. I can tell something’s not right with you today.” I told him vaguely what had happened, and then shared “I think I’m just more tired than I know. Or it’s all piling up on me or something.”

We decided to get Seth a shower before breakfast arrived, so I broke out the hand-held shower head and Seth sat down on a chair in the bathroom, clothes and all, for his first post-surgery hair washing. I had to take off my shoes and socks so my feet didn’t get wet and I know this sounds weird, but it all felt a little Jesus-y. I wasn’t really in the mood to get wet and take my shoes and socks off. And truth be told, I’m the farthest from a hair stylist there is. But this felt like something Jesus would do. I love my husband and it was time for a washing. So I washed his hair and helped him get in the shower before I let him be.

I finished composing my email and pressed send. Seth got out of the shower, breakfast arrived shortly after and he asked me to read the last two days’ blog posts I’d written. He usually reads my blog posts quietly to himself at his leisure. Sometimes he comments, sometimes he doesn’t at all. With him not being able to read this week, he hasn’t been able to read the posts. I was feeling blah and raw, and for some reason, I wasn’t sure if I could make it through a reading aloud of my own writing. So when Seth suggested maybe his mom could read the posts to him later, it was a definite yes.

Seth’s parents came back to the room. Within a couple minutes, we got a call from Dr. G’s secretary. There was paperwork over at Mayo Clinic that had been signed and needed to be returned to Seth’s employer. We needed to pick it up in person. But a form I’d signed yesterday caused a whole lot of commotion, which meant that before I’d be able to pick up the paperwork from Mayo Clinic, I’d need to go sign more paperwork downstairs.

The day wasn’t going smoothly so far.

So I took the folder of paperwork and went downstairs to begin resolving the paperwork problem. I completed a new form and went back up to the room to have Seth sign it. At that point, Seth’s mom was ready to begin reading the last two blog posts, so it was a good time for me to bring the paperwork back downstairs and head off for a little quiet time.

Off I went. I returned the paperwork to the powers that be and let myself wander through the hospital.

I passed the row of nun portraits we viewed two days prior. I read the plaque that described Mayo’s history, how one nun dreamed of opening a hospital after a tornado back in the 1800s. And look at this place now.

I meandered through the gift shop with my eyes set on beautiful things. Flower bouquets. Handmade dolls. Delicate earrings. And plaques with words that would someday mean the world to somebody in this place.

I followed the sign to chapel. All the way up, down and around long hallways.

As I turned the corner into the chapel, a husband photographed his wife signing the cross across her chest.

A woman sat near the front, completely still, completely silent.

I was one of three in the enormous Mayo chapel.

I sat in a long pew. The chapel was incredible, beautiful, amazing and breathtaking. I let my eyes scan wherever they may. I didn’t pray so much as I experienced God’s presence for a half hour, maybe more. Light shined through yellow and blue stained-glass windows. I stared at the vanilla cream columns, the thoughtfully painted blue and white floral designs on the window arches way up high. I noted the repetitive rectangular design on the ceiling, the fans and golden chandeliers. When a young woman wheeled an elderly woman through the chapel, I noticed the stations of the cross, the beautiful paintings lining the walls.

But what I noticed most was the light coming in through the stained-glass windows, the shifting of light and shadows, first on the floor, then throughout the whole chapel. The light wasn’t predictable. But it was beautiful and soft. Unlike the world’s sometimes rude and unforgiving ways, the light was incredibly gentle and forgiving. It entered subtly and slowly. I had to wait for it, and I never knew where it would land next. A shifting of light here meant a shadow there. Freshly lit spaces were stunning and radiant in modest, unassuming ways. I likened the light to God’s ways, to the Spirit’s movement in my life. I need to learn these rhythms of grace.

When my soul felt rest, I got up, walked around the stations of the cross and examined the paintings.

In the back of the chapel, I found a large bible on a pedestal. Before walking away, I read excerpts from the page that was open. Matthew. The treasure and the pearl. Jesus Feeds Five Thousand. Jesus Walks on the Water. Other Miracles. Hmmm…of all the pages. I’ve been hearing these messages of feeding five thousand and walking on water repeatedly the past year and a half. And now here, at Mayo. God has been speaking messages of faith and obedience, provision and trust.

I made my way back to the room. Things felt much better. The chaplain came for a visit and we chatted some more. But before long, we realized I’d need to make my way over to Mayo Clinic for that paperwork. So I hopped on the shuttle.

The shuttle ride was humbling. At the Ronald McDonald House, a mama loaded her significantly disabled son onto the shuttle. At the Gift of Life transplant house, a woman wearing a scarf with a few stray hairs underneath sat down in front of me. And along the way, an unusually friendly man engaged me and eventually revealed he’s transitioning from man to woman, how it’s been hard on his wife. Dear God, what would you have me see? What would you have me learn? What would you have me experience? How would you have me respond?

At that point, I was in another world as far as I was concerned. I likened the experience to my time in Haiti. For some reason, I’d been dropped in another foreign, but holy place.

An elderly man played piano effortlessly and beautifully on Mayo Clinic’s main level. I’d approached from the upper street level, so it was impossible to ignore the crowd of patients and caregivers surrounding him. From the second I arrived, I sensed this was an incredibly holy space, even holier than two weeks prior when I’d noted the healing power of that piano. The man played and played. One song after another. How Great Thou Art. His Eye is on the Sparrow. On and on. A man limped with double leg braces. Women and men sat nearby in wheelchairs. A woman wearing bright pink nodded her head continually in agreement with the music. People threw out requests one after another. And sick people passed with caregivers one after another. The elderly man played with eloquence, all by heart. It was incredibly, incredibly holy. From my perspective up above on street level, it was so holy that it nearly took my breath away. Tears streamed and I literally had to walk away at one point and gather myself because the presence of God was so tangible.

I took pictures. I stood still and listened. I was approached by a man in his 50s who asked my story, brought me to tears, and told me I was beautiful. I moved around from side to side as my body led. I didn’t rush, but stayed still, quiet in this place of holiness. In an odd way, I wished for everyone to be here, to realize how sick we all really are, how we’re living amongst the dying and dying amidst the living, how we’re all desperate for the tender loving care of a Savior. It was another glimpse of heaven, only on earth. Ridiculously holy, indeed.

After a while, I moved on. I picked up the paperwork. I meandered down the hallway to get lunch. I picked up that tiny, amazing, $6 wedding-worthy cake from a delightful bakery, and I walked into a ladies boutique filled with beautiful clothing and jewelry. On the way out, I thanked the store owner for bringing such beauty to a place filled with such pain. “Thank you,” she said, “that means a lot to me.”

On the way to the hospital four days ago, I told Seth that if I was a screenplay writer or movie producer, I’d make a quiet, beautiful, emotionally complex and visually rich movie with a deeply spiritual and meaningful storyline. Yes, I’d make a movie that looks and feels like today. It’s title? When Beauty Falls.

 

 

 

My Meyers-Briggs personality type is INFJ. That means, if left to myself, I have a natural tendency to go deep and dark. I take life seriously, sometimes too seriously. I analyze, overanalyze, sense everything and am deeply intuitive. And I have absolutely no problem lingering in quiet, isolated spaces. By myself.

God created me to be introspective. But that doesn’t mean He wants me to be alone all the time.

During this journey through my husband’s eye cancer, God has reminded me that I can’t face this cancer as one lone caregiver. And I’m pretty sure He’s been saying to me for a while that I can’t do life alone, either. Yes, that is hard to admit. After my travels to Haiti and the Dominican Republic, I realized even more so that Americans are incredibly independent and self-sufficient. For the most part, we have what we need. And we are busy. Very busy. Always doing something. Always going somewhere. So on a surface level, we don’t really need each other to survive. It’s easy to become prideful, disconnected, and too busy for real living and authentic connection. To be completely honest? I’m not sure my personality lines up with mainstream American culture.

But sometimes, I just have to step back and let life take its course. I have to let God run with it and show me how He wants to bring community around me, even when I’d much rather stay in a room by myself, reading and writing all day. (Then I wouldn’t have much to write about, would I?)

Today was no exception. God showed me what it looks like to linger in community, in mourning and rejoicing, in sickness and in health.

All in all, it was a good day. Yes.

Seth’s parents and I arrived back at the hospital by 8:15 a.m. Seth’s youngest brother was there within minutes of our arrival.

First off, for those of you who prayed for comfort after my last post, let me say that Seth’s pain was much more manageable today. Overnight, they landed on a pain management “cocktail” that seems to be working fairly well. Seth mentioned pain and discomfort a couple times today, but not nearly as much as yesterday.

So I ordered Seth breakfast and we all chatted a bit. After breakfast, Seth decided that he wanted to put his own clothes on for the first time post-surgery, so everyone left and I helped him get out of the hospital gown and into a loose-fitting t-shirt and basketball shorts. We snapped a couple of photos with his eye patch because he wanted to share an update on his Facebook page, and then when his parents and brother came back, we all laughed as Seth (and I) composed a Facebook status in our annoying, perfectionistic, both-first-born-children married couple way. I typed the “approved” post for Seth and got it up on Facebook. Within minutes, comments started coming in. His mom read the assortment of lovely, encouraging, and occasionally funny comments aloud in rounds throughout the day for all of us to hear and enjoy.

Seth said as he sat in bed, “This is nice guys. Coffee. Comfortable chairs. You guys talking to me.”

Then we pulled up a special, heartfelt Facebook message Seth and I received a week ago. Seth’s mom and I tag teamed reading of the post aloud as Seth, his dad and brother listened. We spent time reflecting on the loving words we’d read, and the thoughtful, lovely individual who wrote them.

Then the guys told jokes about Metamucil and bed pans, ice fishing and Seth’s seafood allergy. Seth called the nurse the “drug lady” when she came in, and she gently reminded him she’d prefer to be called a “therapeutic manager.” My mom, her best friend and our “baby” FaceTimed us from home and Seth’s cousin called for a chat.

Seth said again, “It’s nice to have all these guys here. They’re all talking. And I can just listen.” 

Seth’s brother left. And I grabbed lunch with Seth’s mom. After we got back to the room, our flower girl came to visit. Believe it or not, she’s a doctoral student at Mayo specializing in proton therapy with aspirations to become a medical physicist (yes we’re old and not nearly as smart as our flower girl). So we chatted about everyday family things and surgery things, but we also talked about not-so-everyday things that only a person in the medical field would know. She educated us up the wazoo, sharing that the gold bottle cap plaque delivering radiation to Seth’s eye this week will be reused later down the road by another patient, that there were three medical physicists in Seth’s surgery, and that he’ll get “surveyed” for the presence of radioactive seeds before he leaves the hospital Friday. Our flower girl reminded us that “positivity is half the battle.” Seth agreed, stating “there have been very few moments when I have lost my positive attitude.” Yes, that is true. I am married to a VERY positive man.

My sister called, we watched a movie in the quiet of the hospital room with Seth’s parents, and we FaceTimed our two oldest when they got home from school.

All in all, this second day in the hospital was good. But what struck me most was the community, the gathering of loved ones who came around us in our time of need.

When we stand in front of family and friends vowing to love and to cherish “in sickness and in health,” the truth is, we’re really not sure what that sickness is going to look like. Will it be infertility, diabetes, cancer, traumatic brain injury, stroke, disability, heart attack, mental illness or plain old stomach flu? It’s hard to say. What I’m thinking today is that YES, wedding vows are of course important, holy and to be kept. But what if we ALL vowed to love and to cherish one another in sickness and in health? What if we ALL came around one another not just in sickness, but in health, too? What if we created authentic, meaningful community in all seasons of life? Wouldn’t life make a lot more sense? Wouldn’t we feel a lot more relief at the end of each day?

This verse comes to mind…

“Rejoice with those who rejoice; mourn with those who mourn.” (Romans 12:15)

It’s basically a reiteration of “in sickness and in health.” What if we lived like that? What if?

Tonight, I leave you with that. Tomorrow, day three.

Good night, friends.

 

 

 

 

8:55 a.m.

I’m eating Oreo cookies for breakfast this morning. Why not? We’ve been at the hospital since 7:30 a.m. We’re officially admitted. Now we’re waiting. The chaplain’s already been in to visit. Just so happens he’s brother-in-law to Seth’s fraternity brother. Seth admits to the chaplain that he feels unusually strong, perhaps it’s because he’s being carried by a strong support system of loved ones and prayer warriors. As I continue to chomp on the familiar chocolate and cream, I stare at the pain assessment scales in this PRE-pre-op waiting room. A female patient sobs across the way. I try to listen in to determine the weight of her burdens, but I can’t hear detail, only cries. She’s in waiting, too.

1:14 p.m.

Seth and I were separated at 10:11 a.m. when he was wheeled in to pre-op. I joined Seth’s parents in the family waiting area, and shortly after, we were directed to the hospital room where Seth will be staying for the next five days. While we were eating lunch in the visitor cafeteria, I received word that Seth had gone into surgery. Surgical placement of the gold bottle cap plaque (that will deliver radiation to his right eye for the next five days) was an hour shorter than we’d been told. So we were a little surprised when a nurse called us to join Dr. G for a post-op family consult at 12:50 p.m.

Dr. G had two images of Seth’s eye and the cancerous area printed and ready for us. He said everything “went really well,” that the gold bottle cap plaque is “perfectly placed and perfectly positioned.” The resident doctor will change the eye patch and shield, and is the only one allowed to do so. Dr. G will be in every day to visit. Seth is allowed to go walking around the hospital every day after 3:00 p.m. as long as he’s accompanied by one of us. We need to hold him by the hand or arm, and he’s to look front and straight ahead. No scanning allowed. No reading is allowed this week either. Seth can watch TV from a distance, but nothing up close that would require his eyes to scan. He’s to remain well hydrated, and the doctor wants him to eat a lot of APPLES while he’s here. Apparently my titling of this series, “The Apple of My Eye,” was right on for more than one reason.

So now, we wait again. Seth is in recovery. Seth’s dad is napping in the room. Seth’s mom is getting coffee. And I’m here in a family waiting area. The family next to me is here for cancer, too. They’re discussing a kind 80-year-old woman who was up praying for their family first thing this morning. They comment on her kindness, her sweetness. Seth’s mom returns and we talk about health, wellness and nutrition until Seth’s dad returns and notifies us that Seth should be on his way to the room soon.

3:05 p.m. 

Seth was just brought into the room from recovery. He’s clearly still waking up from anesthesia, but persisted that he was “starving,” so the nurse got him some peanut butter toast. The nurse gently reminded him he’ll want to eat a lot of apples. Seth’s reported more than once already that his eye is “more irritated than he expected it to be.” And now, he’s sleeping. I have a whole pile of tasks I brought to do while we’re here this week, but I can’t imagine getting my brain around any of it right now. So I think I’ll read a mindless magazine.

4:33 p.m. 

The nurse recently administered Seth some pain medication at his request. His eye is throbbing. “Like daggers,” he said. Seth said it’s “not good to open [his] eyes.” Unless he “keeps looking straight ahead it hurts. The scratchiness is painful like gravel or sandpaper.” It feels better to keep both of his eyes closed, so for now, he’s continuing to sleep. Seth’s youngest brother is on his way for a visit, and Seth’s parents found him a DVD player so he can watch movies in the room once he’s up to it.

5:07 p.m. (random deep insight from Amy)

I’m near the end of Jennie Allen’s book, Restless. I’ve been plodding through it since the plane ride home from the writing conference back in October. I’d just begun chapter 21, When Women Dream, and suddenly became keenly aware of the steady beeping of machines in the background of the hospital room. I looked at Seth sleeping, his right eye covered with a patch, bandages and a screen. I thought about everything that’s transpired in my life, even in just the past six weeks. And I have to believe that ALL of this is part of God’s plan. There’s mystery in not knowing. But if we allow ourselves to live aware, the threads start lining up and weave together into fabric that makes complete sense.

The machine keeps on beeping. Life keeps on ticking. We breath in. We breath out. We cling to our way. Or we surrender to God’s way. We choose. And what I’m learning is that if we refuse God’s way, He prods us gently, sometimes not so gently. Go this way. This is the way. Sometimes it takes a major meltdown in the midst of a dream come true. Sometimes it takes cancer or some other unexpected, unplanned life-altering set of circumstances to turn us in the right direction. But when we surrender to God’s beat, to His plan for us, life is better. It just is.

7:59 p.m. (random deep insight from Seth)

Around 7:30 p.m., Seth began complaining about his eye again. He wasn’t sure the pain medication they administered shortly after 4:00 p.m. was really working. He was having a hard time imagining lying around the hospital room with his eyes closed, in pain and discomfort for five days. His brother and I suggested that maybe they could administer a stronger pain medication, so when the nurse came in, we made the request and it was granted. Within 15 minutes, the newer, stronger pain medication had clearly set in and Seth was chatting away, the most energetic he’d been all day. He talked with his brother about beards and how he looked like an “albino seal” when he shaved his off at Christmas. And he joked about his eye post surgery. “When I snuck a peek in the mirror, I was expecting a horror show, but all I saw was an eye patch.” Yep, that’s my man.

We walked two laps around the unit. It was the first time he’d been up and out of bed since he sat in the wheelchair at 10:11 this morning. Then we turned down the heat, got him snuggled up in bed with his fleece blanket from home, and prepared to leave. He was clearly fading fast, but still in fairly good spirits.

10:32 p.m.

I’m finally back in the hotel room finishing up the day’s post. I might not make it through the five books, February budgeting sheets or anything else I brought to do this week during waiting hours, but we made it through the day. And that is a good thing.

 

 

 

That third day at Mayo Clinic, I found myself feeling a little helpless.

We entered the oncology waiting area for the first of two back-to-back appointments Seth had scheduled that morning. The waiting area was loaded, filled with sick people. Maisie was coughing again and I’d learned my lessons on coughing more than once that week already. Seth suggested that Maisie and I go to the atrium where it was quiet. He’d wait alone in the waiting area.

So off we went to the atrium. Maisie and I parked on a couch, and I plopped all our stuff on a nearby chair. In that moment, I felt helpless. I recognized this feeling from days gone by, from my sister’s many years battling addiction and mental illness. Yes, there’s a helplessness that can settle in for caregivers after a while. A time comes when you wonder if you’re really doing any good, if you’re really worth any while. I knew this feeling because I’d lived it. I have, in fact, learned to flee from it. Because not being able to do anything for a loved one is heartbreaking and mind numbing. It makes you want to surrender and say forget it, there’s nothing I have to offer. Yes, I allowed myself to sit in that caregiver helplessness in the Mayo atrium for a minute or two that day. I felt, for a moment, as though it was pointless for Maisie and I to sit there, far from Seth and his oncology appointments.

But this day, God graced me with His viewpoint.

In came a wife pushing her husband in a wheelchair. I’d noticed them the day prior when we were waiting for Seth’s CT scan, and now today in oncology. She talked on the phone as she pushed her husband to the back windowed wall of the atrium. She helped him out of his wheelchair into a regular chair, all the while continuing to talk on the phone. He sat in silence, weak and frail. After a while, she handed the phone to her husband, promptly picked up another phone and began texting. When she was done texting, she broke out a tablet and took some notes, then reviewed what I assumed was a letter detailing what was next on the day’s agenda for her husband. He passed her the phone. And she assisted him back in his wheelchair. Off they went, back to oncology. Yes, this is the role of the caregiver – calling, emailing, texting, pushing, prodding, encouraging, lifting, loving, and verifying this and that. Caregivers manage relationships and medical realities.

I see God. Caregiving isn’t pointless. There’s purpose here. There’s a reason we’ve been assigned to this role. Even when it’s hard. Even when it feels like there’s nothing we can do to help.

After 2 1/2 hours and two appointments with oncology, Seth returned with updates, news and pictures of a gold bottle cap thing called a “plaque.” During surgery, Dr. G will be temporarily stitching the gold plaque to the wall of Seth’s right eye where the tumor is located. Focused radiation will be delivered to the eye over the course of a five-day hospital stay.

Clearly, this gold bottle cap plaque is out of my hands. From a medical standpoint, there’s nothing I can do to help with the events that are about to transpire. I’ll leave that to Dr. G and his colleagues at Mayo.

But I am caregiver. I can be there when Seth gets out of surgery. I can sit by his side when they take the bandages off for the first time, the second time, the third time and so forth. I can drive him home when we’re discharged. I can make our home comfortable for him. I can blog, text, make phone calls and respond to Facebook messages to ensure everyone’s updated along the way. I can keep the kids out of daddy’s hair so he can rest and heal. I can be there for him on the hard days, when doubt and discouragement settle in. I can be positive and supportive when all I really want to do is run and hide. I can believe with him. I can believe for him. I can believe in him. I can love him. I can pray for him. I can surrender my husband’s healing to Jesus, to a mighty God who can and will heal him. And I can rest in peace knowing this role of caregiver has been assigned to me more than once so my eyes might be opened, so my heart might be enlarged, so my faith might be strengthened, so I might understand what it means to trust and love. Even when. Even if. Even so.