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.

 

 

 

And so began day two of our “adventure” at Mayo Clinic.

I got a great night’s sleep, but woke up with a huge headache and runny nose. Seems I caught a cold from the craziness that had been the past 13 days. Not to mention, Maisie had been coughing in my face non-stop. All in all, though, it was a lazy morning to start.

The day was overcast, snowy and slushy. The plan was to go to Seth’s two appointments at Mayo and head home. Worst case scenario, we were due to arrive back home no later than 7:30 p.m. So we packed our suitcases, and Seth headed outside to brush off the snow, load the bags and get the vehicle warmed up. As Maisie and I watched Seth from the warmth of the hotel room, I flashed back to college, to our wedding day, back when we were innocent and totally naive about marriage and real life.

We were scheduled to meet with the lead eye doctor that day, and knew we needed peace and quiet for his evaluation and interpretation, so a family member arranged for a local pediatric nurse friend to watch Maisie for four hours. We left her crying, but in the hands of an obviously loving and gentle spirit, Clarisa.

Seth and I arrived at the appointment on time. Within a minute, the day’s “plan” was ruined. We were told Seth needed a CT scan, pre-op appointment, and additional appointments with oncology, which meant we had a very full day ahead of us and would need to stay an additional night.

His first eye exam was standard operating procedure. Then we sat in a small waiting room for a good half hour before we were called in for the most important eye evaluations to date.

There we were, finally in the room where Seth’s diagnosis would be validated, and treatment would be revealed. Only 6 in 1 million people have Seth’s type of eye cancer, choroidal melanoma. Because this type of cancer is so rare, we were sent to Mayo Clinic to meet with the nation’s leading experts in its diagnosis and treatment.

We saw a female doctor and med student first. Our appointment with that doctor was crazy long itself. She took a thorough medical history before the exam, so much so that I had to text Seth’s mom multiple times to verify in detail the family history of eye problems, cancer and various ages at death. The eye exam began. I continued to request and receive family history via text. My mind flashed back, yet again, to college, to our wedding day when we had no clue of what was to come, when we said “I do” to “in sickness and in health.” This is what “in sickness” meant. And I couldn’t help but see my mother-in-law’s baby boy reclined on that examination chair. Who imagines their baby boy getting cancer? Who wants to go through that? I couldn’t help but believe that her precious cargo was in my care. Ensuring a proper family history had been gathered was the least I could do.

The room was completely silent as the female doctor examined, then took notes on photographs that had been taken of Seth’s right eye the day before. Photographs, then notes. Photographs, then notes. All in complete silence. Eventually, she apologized for how long it was taking. “The doctor is just very thorough. He likes things T’d up when he comes in.”

A little talk of Seth’s work and minions lightened the air.

The doctor asked Seth if he ever had flashing in his left eye. “No,” he said. She kept examining the left eye. When she was finally done, Seth said “It makes me nervous that you were looking so long in the left eye…that you found something.” (his right eye is the one with the cancer). “Yes, I did,” she said. “It looks like we might need to have something lazered off.”

After the female doctor completed her evaluation, the lead doctor entered. He was scholarly, professor-like (which makes sense considering he is a professor), and clearly genius all around. From here on out, let’s just refer to Seth’s primary eye doctor at Mayo as “Dr. G” for genius. Okay? Anyway, as Dr. G evaluated Seth, I was reminded how grateful I am for genius minds. I’d be clueless if I tried such a profession. And I couldn’t bear the weight of responsibility for someone’s sight.

The room was silent. Good thing Maisie wasn’t with us.

Dr. G began examining Seth’s eyes.

“Did you ever weld?”

“Did you ever get hit in your eyes?”

He probed further about family history. I sent more texts off to Seth’s mom.

As Dr. G continued to examine Seth in silence, I began to feel a little sick, the same sick I’d felt that first day we received the news. Dr. G continued continued with his directions to Seth.

“Straight up. Down and right. To the right. Down and right.”

He dictated aloud to the female doctor, scribbled notes here and there, and sketched on a piece of paper.

I found myself nearly losing it a couple times during that evaluation, during those moments of complete silence and seriousness. But I braced myself and made it through.

A nurse came in. “Patient has a CT scan at 2:00, last of the day, they need him down there ASAP.”

The doctor verified we’ll take as long as we need, finished the examination and shared his findings.

1) The melanoma is medium-sized.

2) It is in a position where we could choose to do a biopsy, but risks seemed to outweigh the benefits, so we decided against a biopsy. The doctor has no doubt this is melanoma.

3) There is a 90% chance of killing the tumor, saving the eye, and saving some level of vision in the eye.

4) There is a 25% chance that melanoma will show up in another part of Seth’s body at some point in the future (and a 75% chance it won’t).

5) Treatment will include surgery and focused radiation to the right eye. Surgery and placement of radiation on day one, surgery and removal of radiation on day five. In hospital total of five days.

6) There is a weak area in the left eye that also needs laser treatment. 

7) There will be vision loss in the right eye. The amount of loss is unknown until post-surgery and radiation.

8) Seth will be working with “one good eye” from here on out. Therefore, he’ll need to wear side-shielded glasses for mowing and snowblowing, polycarbonite glasses, and will not be able to wear contacts.

9) Eye will be really swollen for a month. He “won’t want to work” for two to three weeks post surgery (although Seth wants to get back to work as soon as he’s able). His eye will be drier than normal. His eyelid may be droopier and double vision is common, but won’t know either of those things until post-op. Both are correctable with additional surgeries if needed.

10) Follow-up appointments at Mayo one month post-op and three months post-op.

I quickly glanced at the notebook full of questions we’d written down before we arrived. We needed to get to CT scan ASAP, so we verified the basics and moved on out. We were escorted down the hallway by a nurse who gave us a folder of information and explained a bunch of procedures for Seth’s upcoming surgeries, radiation and hospital stay. Then, we were set free to the CT scan.

At this point, things quickly became foggy and blurry. I felt scattered. I wasn’t able to focus. At all. 

Seth made his way to CT scan.

I ran to the info desk so they could point me in the direction of 15-minute parking. Clarisa, the pediatric nurse who had been watching Maisie the past four hours, needed to get to work, so we agreed she’d drop off Maisie at the turn-around entrance to Mayo. I ran across the cold slush and saw Clarisa getting Maisie out of the car. They’d gone to Toys ‘R Us, so Maisie had valentines, a doctor kit, and stickers. Clarisa tried to get Maisie’s car seat out with no success, then I tried, thankfully with success. Clarisa helped me get Maisie, Maisie’s stuff and the car seat into Mayo. I thanked Clarisa and God for her help. There’s no way Maisie could’ve been with us those past four hours.

I lugged the stuff over to the info desk and tried to orient myself as best as possible. I was still in another world. In fact, I wasn’t hearing right or processing straight. Everything sounded muffled. The info desk attendant gave me a numbered plastic chip in exchange for the car seat, and gave me (what seemed like) a set of super complex directions to the CT scan building. All I heard was “downstairs,” so we made our way. Maisie and I headed down a long flight of stairs. I imagined her falling down the entire flight, in a bloody mess at the bottom, so I walked in front of her with my hand out just in case. Live piano music played on the main level. It was balm for my weary soul.

I made my way to the lower level information desk for further direction. Thank God for information desks. He pointed me that way, then that way, then up.

The building was full. People were everywhere. Sick people everywhere. Wheelchairs everywhere. We passed a baby on the way. Her new life was fresh, hopeful, welcomed.

“We’re crabby. We’re late for all of our appointments,” exclaimed a woman as we waited for the elevator up to CT scan. A man joked about his weight and his health. We laughed a bit. The humor was necessary, even if just for a second.

By the time Maisie and I got up to CT scan, Seth was coming out. He’d already finished the preliminary preparations and was back in waiting. Maisie wanted to do Valentines right then and there in the waiting room, right then and there at the entrance to CT scans. A whole waiting room of people watched us as Maisie said loudly “I wanna do valentines!” I was done. DONE. I knew a lady nearby was watching my every move, my every response. And I didn’t care. I knew she knew this was all a bit much for me.

We went out in the hall to wait for the CT scan. Maisie broke out the valentines, and I wrote in my journal. Seth was called in.

After the CT scan, we headed for a late 3:00 lunch in the cafeteria, but it was closed. So we made our way down a long hallway to a bunch of fast food joints. We were supposed to be heading home by now, but we still had appointments and more tomorrow, too. So we took time to contact the families who were caring for our two oldest children and told them it’d be another night.

We approached Dairy Queen. Half-priced customer appreciation day. Score. Total for 3 hot dogs, 2 blizzards, and a sundae? $9.65. A young, beautiful woman fed her non-verbal fatherly figure (in a wheelchair) some ice cream. It was totally unexpected right there in the middle of that tiny DQ, but totally beautiful to me.

15 minutes later, after stuffing down a hot dog and blizzard and rushing to Seth’s pre-op appointment, Maisie and I found ourselves in another waiting room. Maisie wanted to know if I could “help [her] do valentines at the hotel.” I was getting texts from my sister, my parents, from the family watching our daughter back home, and from the family watching our son back home. I sighed, then took a breath. A woman on oxygen turned around and smiled at me. A Mayo employee warmly assured an elderly woman “now you can relax on this test,” after the woman had confessed “it’s been a long day.”

Piano music played quietly in the background. I wrote in my journal…

Life is an ongoing melody. Whether we’re living or dying, healthy or unhealthy, hating our life or loving our life, life plays on.

An elderly man came in at 4:34 looking for his wife. He was “anxious for [their] 4:40 p.m. shuttle.” Within seconds she was there, turning the corner back into the waiting room. It was the woman who’d confessed earlier “it’s been a long day.” She’d had an EKG. “Hurry,” said her husband. She shuffled cute to him, as fast as she could. He held open her red coat, she slid in her arms, and off they went.

A familiar melody played in the background. This was painful, but beautiful. All at once.

I took a few deep breaths and looked out into the hallway at people pushing wheelchairs. Another day at Mayo Clinic was coming to an end.

The appointment went extra long. Eventually, Maisie and I meandered our way into the atrium. A doctor in full scrubs played beautifully and effortlessly on the piano. We sat. We rested. And I watched her play this beautiful melody of life, of living, of dying, of being in this world.

This is the melody of living amidst the dying.

 

 

 

I arrived back home from my trip to the Dominican Republic on Thursday night. On Friday morning, Seth received a phone call from Mayo Clinic notifying us that we needed to be there for two days of appointments for further evaluation of his eye cancer starting at 8:00 Tuesday morning.

There wasn’t much time to prepare, so we quickly arranged child care for our two oldest and decided to bring the three-year-old “baby” with us. Because of the timing of the first appointment, we knew we’d need to travel to Mayo the night prior. With that in mind, I got right on the task of reserving two nights in a hotel. I spent two hours scouring the internet for an affordable hotel room that had decent customer ratings and was also a reasonable distance from Mayo Clinic. It didn’t take long for financial implications and worries to set in regarding this medical journey on which we were embarking. Two nights of hotel. Cha ching. Meals for three people for two days. Cha ching. Gas two and from. Cha ching. Parking. Cha ching. Deductible, then 20% coinsurance for two days of appointments at Mayo Clinic. Cha ching. Even with financial implications looming large, there’s clearly nothing we can do about it. The costs are a necessary part of restoring health. So we press on, even so, knowing that medical bills will be the least of our worries if we can just pull through the other side of this health crisis.

Tuesday morning came before we knew it. There we were in the hotel’s breakfast nook eating scrambled eggs, sausage and french toast. I noted a heaviness in the air the moment we walked in. I recalled the fact that it was a Tuesday morning, and most, if not all of the people in the room were visiting because of significant medical concerns.

Maisie, our “baby,” coughed while she was eating breakfast. I held a large, white napkin up to her mouth as quickly as I could and told Seth in a whisper “We need to cover her mouth when she coughs in here. We need to be as careful as we can.” Moments later, I got up to get more orange juice and overheard a lady speaking quietly to the hotel’s breakfast attendant. “We just can’t afford to take a chance. I’m here for eight weeks of chemo the way it is.” It was then that I noticed, the woman and her husband had moved tables AWAY from us, to the back corner of the room. Yep. I was right on that coughing.

We knew we were getting close to Mayo Clinic when we started noticing an unusually large number of hotels downtown Rochester. And we passed the “Limb Lab,” the biggest and most beautiful store we’d ever seen dedicated to prosthetic limbs.

Mayo Clinic was on our right as we pulled in. The parking garage was to the left. When we got out of the vehicle, Maisie said “Is this where you work, daddy?” Seth responded, “No, this is where they’re gonna make my eye better.” Maisie probed with another question, and Seth gently tried to pull some wool over her three-year-old eyes by responding with some vague, not-really-true answer. I noted quietly that it would probably be developmentally appropriate to share that his eye has “an owie” and the doctors are going to help him fix it. I figured there was no reason to beat around the bush. Eventually, she was going to realize daddy has “an owie” on his eye, so we might as well begin addressing it now. Seth agreed and all was well.

We proceeded to patient check-in, which was more like a gigantic hotel than a medical clinic. Seth received a detailed schedule for the next two days, but we were reminded that the schedule is subject to change at any moment. That first day, he was booked in back-to-back appointments from 8:00 a.m. to 12:30 p.m. which consisted of multiple vision exams, special photography and imaging of the eye, and blood work.

We made our way back to the area Seth had most of his appointments for the day. Seth was greeted warmly and called back immediately. I stayed in the waiting area with Maisie, trying to keep her quiet and entertained. Several individuals with thick eye patches came through as we waited. I couldn’t help but believe this was a glimpse into our future.

After we’d been there a while, an elderly gentleman came over, sat down beside us, and gave Maisie a small bouncy ball. To be honest, I thought he was a little crazy. Give a three year old a bouncy ball in a waiting room at Mayo Clinic? Disaster in waiting. But it was great. Maisie threw the ball much more gently than I would’ve ever guessed, and the scene brought smiles to people waiting near us and with us. I was wrong, so wrong. There was power in that bouncy ball, and there was power in the presence of my three year old playing innocently amidst such medical struggle. The fragility of the elderly woman seated in a wheelchair next to us struck me. She smiled ever so slightly as Maisie threw the ball. I wondered how much she could see. I wondered when the last time was that she was able to throw a ball, catch a ball, or get down on the floor to pick up a ball.

After two to three hours of waiting, Maisie wasn’t tolerating the waiting room anymore, so we went out into the long hallway to change things up. I sat down on a couch and made my sleepy self comfortable. Maisie walked the windowed ledge. The dichotomy between Maisie’s innocence and the medical world was evident once again. There she was walking the ledge as people talked about catheterizing, chemotherapy, “this is all we can do,” and “I’m hanging in there. I’m tough you know.” I pondered all the things Maisie doesn’t know about life yet. I pondered our perceived strength vs. our real-life weaknesses. We’re all walking on the ledge, really. We’re all hanging in there as best as we can. We’re all making the best out of situations that are less than ideal, whether this month’s reality is chemotherapy or living paycheck to paycheck.

I finally gave up. Maisie had been walking the ledge for who knows how long. And I was getting sleepy sitting there on that couch. The exhaustion was really setting in from my trip to the Dominican Republic, four days acclimating to home, and now the trip to Mayo Clinic for Seth’s eye cancer. In fact, I’m pretty sure I’d fallen asleep while Maisie watched some silly kids surprise egg video on YouTube. Just as I dozed off, Seth approached. He was done, but needed to head down to blood work. So off we went.

Blood work was crazy busy. Chairs and couches were lined in rows. I invited Maisie to pick a seat, and she invited daddy to sit down next to her. They enjoyed a few minutes together before he was called in.

All in all, Seth spent 4 1/2 hours in appointments that first day at Mayo Clinic. We ate lunch, took a nap in the hotel room, made a best effort to bring Maisie swimming, and joined Seth’s cousin for dinner.

As we got ready for bed at the end of the day, I told Seth “I can’t quite seem to get my bearings. I feel like I’m totally out of routine.” “You’d better get used to it,” he said, “we’re going to be out of routine for a while now.”

Yep. Out of routine, we most definitely were. Out of routine, we most definitely are.

I brushed my teeth three times that first day. The familiarity and predictability of the habit I’d had since toddlerhood was oddly refreshing to my spirit in the midst of the unknown medical world to which we were quickly acclimating.