This morning, we made our way to Mayo Clinic for round three. It was time for Seth’s one month post-surgical eye cancer appointment with Dr. G. So we woke at 4:15 a.m., got ready and headed down the road for his 7:30 a.m. appointment.

We arrived 25 minutes early. Seth grabbed some coffee across the street at Starbucks, and I went straight downstairs to the piano, my favorite hanging spot at Mayo by a landslide.

I sat down next to an elderly woman who’d just placed a sign on top of the piano. I thought for a minute she might be performing. But she was a patient, and a regular at that. For 10 years, she’s been coming to Mayo for treatment. Heck, Mayo’s like a second home to her. The woman was feisty, brilliant, beautiful, insightful and with it. Whatever 10 years of health problems ailed her had absolutely NOTHING to do with her brain and her psyche. She was amazing. Yes, she was a glimpse of who I’d like to be at 80-something.

We chatted briskly, like time was short, like we just needed to get down to the business of this piano we loved so dearly. She told me about the elderly woman who comes to play every Monday and Thursday from 10 a.m. to noon. She plays by heart, by ear. She doesn’t get paid a penny; she does it because she loves it. She watches doctors, nurses, patients and caregivers pass in front of her, above her, all around on each side. She lets the music flow out of her fingers based on what she sees. If peoples’ tone is somber, she plays accordingly. If peoples’ tone is hopeful, she plays accordingly. She’s witnessed, too many times to count, peoples’ moods shift completely as they pass. Hopelessness turns to hope in the form of familiar words and tunes.

There’s a small group of people who don’t care for the piano music. They want to ban it. Get rid of it. Take that piano out of here. It’s distracting us from our work. It’s distracting for our patients. The sound travels too far. Move it somewhere else.

But people love it. It’s healing. It’s holy. There’s no better place for it.

Move it over here.

Move it over there.

Forget it, man. The acoustics have been tested. The acoustics have been measured. THIS is the place for the piano.

The elderly woman and I ponder the WHY of it all. WHY this place? WHY here? WHY not here? WHY is this so perfect? The three-leveled open atrium? The curved walls? The walls mixed with open spaces for sound to travel and dissipate wherever it may? Who knows WHY, but God? This holy anointed piano is here because God wants it to be. Because He wants to heal HERE. That’s WHY.

A princess donated the piano to Mayo, had it shipped after she’d been a patient. It’s worth $150,000 said the elderly woman as we gazed at its grandeur. “Oh, I imagine,” I said. It’s priceless.

We chatted some more, that elderly woman and I. I loved her dear. Such a treasure. Such strength. I’m sure I could’ve sat there all day, but duty called. After all, I wasn’t there to chat with an elderly woman, nor was I there to chat about a piano! Seth had arrived with his coffee and was gently prompting me from behind. “It’s time to go, we have to go.” “Good bye,” I said to the elderly woman. “I hope we see you again, I hope we see you later.”

As we walked to the elevators up to ophthalmology, I told Seth “Twenty minutes in Mayo, and I already found an amazing story. I love this place.” “That kind of thing doesn’t float my boat,” he said. “Oh, it totally floats mine,” I responded.

We arrived upstairs and were called in within minutes.

Over the course of the next two hours, we saw a nurse, a doctor, and Dr. G.

As of this one-month postoperative eye cancer follow-up, Seth had this to report to the doctors:

• He’s continuing to see mild strobing lights in 3/4 of the periphery of his right eye (prior to surgery, the strobing was in 1/4 of the periphery).
• His vision is “not as good as it used to be, but is acceptable.”
• The vision in his right eye seems to have worsened as compared to before the surgeries, but when he has both eyes open and they’re working together, it’s just fine.
• He still needs Tylenol for headaches.
• He’s using wetting drops for his eyes.
• No double vision.
• On the extreme periphery, his vision is not as “trustworthy” as before, but it doesn’t seem to be a major problem.

The doctors checked his pupils to see if they’re working together. They checked the pressure of Seth’s eyes with some fancy device made by Medtronic. They did a quick examination of his sight. They asked a lot of questions and did a lot of “look up, look down, look right, look left.”

As of this one-month postoperative eye cancer follow-up, Dr. G had this to report to Seth:

• Seth is on the upswing now in regards to his vision. His vision will continue getting better, probably for the next year and a half, then it typically gets worse after that.
• He has “perfect mobility!” (Dr. G was VERY happy about this.)
• Dr. G was fairly certain Seth would have double vision given the size of the melanoma, so he was delighted to hear Seth hasn’t had any issues with double vision!
• A few little stitches remained in the eye.
• Seth can do “anything [he] wants” in regards to exercise and lifting weights from here on out.
• Seth is free to see the optometrist for a new prescription, but will need shatter-resistant lenses in his new glasses.
• No eye ointment is needed after today.
• He should use “systane drops” for his eyes for dryness and irritation.
• Dr. G recommends prescription goggles for swimming.
• He should wear glasses all the time to protect the eyes, especially the good eye, even when getting ready in the morning. (Dr. G was most adamant about Seth wearing glasses. Yes, this has been a bit of a struggle as Seth indicated in his guest post, but is something he’ll be working through.)

As Dr. G removed the stitches in Seth’s eyes with a tiny tweezers, I noticed faint classical music coming from the computer. I hadn’t heard it before. Dr. G must have turned it on when he entered the room. The artist was busy with his craft. The art of eyes. The art of helping human beings SEE. The art of restoring VISION.

Dr. G called into an automated phone system and dictated a report in a flash. Amazing. Incredible. Brilliant.

Dr. G shook our hands and smiled.

“One-month check up? GOOD!” he said as we walked out of the room.

Before we left, we made our next set of appointments for May 21st and 22nd when they’ll look exhaustively at the tumor to see if it’s begun shrinking. They’ll draw blood, do a MRI, take an ultrasound and photographs of the eye, and Seth will see Dr. G again.

At lunch, Seth joked about how we’ll make an overnight date of it. How we’ll leave the kids at home with one of our parents. How we’ll go out for a nice dinner just the two of us that first day back at Mayo, round four. How we’ll stay in a quiet hotel and head back for more testing in the morning. Yes, that’s my Seth. An eternal optimist. Always looking at the bright side of life. Even in the midst of eye cancer.

Signing off for now, friends. I won’t be writing about our journey through eye cancer until May when we’re back at Mayo. In the meantime, I’ll keep writing…right here. So join me, will you? Good stuff’s coming between now and then!

 

 

 

 

I’ve been blogging about our journey through eye cancer for several weeks now. It’s been a ride, for sure. The writing has been therapeutic for me, and informative and insightful for those of you who have followed along. But I’ll be honest. Something has been missing. I’m keenly aware that my perspective as wife and caregiver is much different than my husband’s perspective as husband and patient. So early last week, I invited my husband to share a guest post on the blog. I wanted to give him a place to process and express his experience in narrative form – more than a clever Facebook update. I also wanted you to hear, first hand, what this “adventure” has been like for him. Without further ado, I introduce you to my husband, Seth. Please extend a warm welcome. It’s his first time guest posting on my blog, and I am oh so proud of the way he’s handled it all.

Today is my first day back to work. Today is my first chance to get back into a normal routine. Today is the start of a new phase in my eye cancer journey, but today is not the day for a full-on celebration.

Sometime later this year, we’ll hear Dr. G pronounce the medium-sized tumor in my right eye shrinking. And a few months later, he’ll confirm it again. Perhaps a year or two from now, he’ll tell me that we’re home free.

That day will be the real triumph. We’ll take the day off, have a great dinner, and probably gorge on Dairy Queen. (Better yet, we’ll take the day off from touring the sights of Jamaica, have a great dinner on the cruise ship, and probably gorge on Dairy Queen later in my new Ford F-150 Raptor.)

Today is not that day, but it is a milestone, and a damn positive one at that.

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The year has not gone as planned. 2015 started well enough, but my January 8^th annual optometry exam ended with an emergency appointment to fix a supposed detached retina the next day. And that appointment ended with a somber ophthalmologist telling me that I have a choroidal melanoma. His staff was already on the phone with the best doctor in the world for this type of cancer. A doctor who happens to be at the nearby Mayo Clinic.

I remember sitting in one of those awkward ophthalmology chairs and wondering how I was supposed to react to this news. The doctor had said “you have a rare form of eye cancer” like a mechanic would say “you’ve blown a head gasket” and an intonation reading “this is pretty serious, but we’ll fix it.”

So I responded accordingly, with optimism. I smiled, asked a few questions, and thanked him for his help. When the office manager, not a regular staff member, took care of me afterwards, bending over backwards to ensure I didn’t leave there without an appointment at the Mayo on the books, I sensed the seriousness of the situation, but also the confidence of the plan moving forward.

So that’s the tone I took for my own. When I called my wife, Amy, on the way out of the doctor’s office, I gave her the news and a prognosis filled with positivity. Not only was that how the doctor gave it to me, but that is also how I live my life. Never is anything so bad that we can’t trust God to deliver blessings in our life.

But people are different, and not everyone responds to bad news in the same way. Some people freaked out a bit, understandably. I’m sure Amy was knocked down by my call. And I know other folks were too. I hadn’t posted anything on Facebook, but word spread fast across our extended family and within hours I was getting calls and texts. Within days we had received a trunk full of meals from Amy’s aunts and uncles to get us through the next week, when Amy would be traveling to the Dominican Republic with Compassion International.

In fact, the support was staggering. Once we decided to be public with the news and capture every step on Amy’s blog, the response from our family, friends, and colleagues was amazing. You know how good it feels to have a birthday on Facebook? Brighten the glow a hundred fold.

Over the course of the next few weeks, we received an overwhelming amount of love, prayer, and food from everyone dear in our lives. And when I was in the hospital, hearing that support was my favorite part of the day.

I never felt ill. I never had any symptoms beyond the very faint strobe lights in the lower right corner of my vision that triggered a mention to my doctor. And there were no drugs, no exercises, or no preventative measures to take between my first appointment in January and my surgery in February. So once I got used to having a cancer diagnosis – and getting used to it was surprisingly easy considering the positive prognosis – it was easy to settle into my life for a few weeks and forget about the whole thing.

My pre-surgery visit to the Mayo threatened that calm. Three days of tests that included hours of taking pictures into my eyes using the equivalent of the sun to illuminate each shot was not fun. The official confirmation of my diagnosis in my right eye and the news that I even have a “weak spot” in my left was not a high point. But it was the doctor’s aside – “oh yeah, and you can’t wear contacts again” – that caught me off-guard. Yes, I have eye cancer, but at least I had planned to look good while conquering it.

I’m still coming to grips with and planning my negotiation terms in the contact lens debate, but that’s not what threatened all my positive energy at the Mayo. It was the realization that I was a young 41-year-old sitting in the waiting room near a stranger in much worse shape than me. A young dad staying the same hotel as a woman who would be staying there for six weeks during her chemotherapy. A man who made eye contact with an old married couple, the husband wheeling around his bandaged wife. For the first time, I recognized my mortality.

It was the positivity of every single medical professional at the Mayo, however, that ultimately kept my optimism strong. I met with dozens of grad students, nurses, fellows, and doctors in those three days, and not one of them looked at me with pity, not one of them gave off the end-of-life vibe, even while discussing the procedure for sewing a golden bottle cap filled with radioactive seeds onto my eyeball, the prospect for losing some vision, and the risk of spread. They counseled me in the friendly, urgent way a DisneyWorld attendant helps a parent find a lost child in the It’s a Small World ride: “This is serious, but we’re going to fix it.”

Two weeks later, I was in the hospital for two surgeries – one to sew on the bottle cap and one to take it off – and two uncomfortable sessions of coming-out-of-anesthesia nausea. There were plenty of reasons to be negative. My eyes scratched like gravel and we didn’t hit on the right cocktail pain meds for many hours. The food was terrible and I couldn’t even watch TV because it was too bright. Nurses woke me up every four hours all night. And my wife and parents had to leave every evening at 8:00 pm when visiting hours ended.

But it’s much easier to be positive. I had full days of rich conversation with my wife and parents, who drove up from their snowbird vacation in Florida. I enjoyed the quiet at night without kids because my mother-in-law graciously stepped in to manage the household. I connected with family members and friends on the phone and online that I hadn’t talked to in ages. I took every nap I wanted in a surprisingly cozy bed and my favorite blanket from home. I sat up with a large, black coffee and listened with my eyes comfortably closed while my mom and my wife read to me the new well wishes as they were posted online.

Today, my eyes are nearly back to normal and get better every day. My early recovery was three weeks of eye patches, sunglasses in the house, and nearly full days of sleeping. But lately, my recovery has been cautious outings, working from home, and taking it easy.

Today is my first day back to work. Today is my first chance to get back into a normal routine. Today is the start of a new phase in my eye cancer journey, but today is just another day of tackling it with optimism.

Seth

It’s been a journey, friends. If you’ve followed along on the blog, you’ve been with us through it all.

We’re not done with this eye cancer yet, but we’re approaching another major milestone.

My husband, Seth, hasn’t been into the office since Friday, January 30th. On Monday, March 2nd, he’ll return. He’s been working from home for two weeks now, and has made particularly great strides each of the past 12 days. It’s hard for a wife to measure the health of her husband, but let me just say he fed the kids breakfast this morning AND made oatmeal for me without prompting. That says a lot, don’t you think?

I’ve asked Seth to share a guest post on the blog this Monday, his first day back in the office. (Yes, I’ve been quietly and gently suggesting it all week. Today at lunch, he finally agreed to draft something this weekend.) So you’ll hear more from him very soon.

In the meantime, I wanted to share how I know we’re ready to move on to what’s next…from my perspective as wife and caregiver.

Halfway through through the month, my daughter participated in a week-long cheer camp. Two weeks ago, all the girls on the cheer team were scheduled to perform at a boys’ basketball game. Seth was still sleeping 75% of the time, so I had to haul all three kids out to the game by myself. Okay, so sports aren’t necessarily my favorite thing in the entire world. Neither is hauling all three kids to any big event by myself. But I thought I was ready. I thought I could do this. I thought it might be just fine. It was, in fact, fine. But it wasn’t awesome. Granted, I did have a three year old with me and it was bedtime and it was late, but by the time halftime came and the girls finished their performance, I was READY. TO. GO. I didn’t realize how drained I really was until I was out at a major social event. My ability to socialize was ACCEPTABLE, but not ADMIRABLE. When I saw how social and talkative everyone else was, I realized how tired I was. When I saw how much fun everyone else was having, I realized how much we’d been through and how much we were still on the mend. I was tired. I wasn’t really ready to go out yet. I wasn’t ready to chat it up with anyone. I just wanted to see my daughter perform and go home. So I did just that. After our daughter performed, I picked up all of our stuff, let the two older kids stay with friends, brought the baby home to bed, and went back a half hour later to pick up the two oldest. Half of a basketball game was all I could handle and I never once felt guilty about leaving early.

Contrast that with last night. Our son had a band concert. Seth was awake, alert! Ready to go to the concert as if nothing could hold him back, as if he never had eye cancer in the first place, as if nothing had ever happened. We went as a family. My parents had decided, last minute, to come for the concert. So we met them in the auditorium, too. I wasn’t super social with everyone, my mother and their mother, but I never am. I did, however, feel MUCH more energetic than I had at the basketball game two weeks ago, and MUCH more ready to socialize when we did engage with people we knew. Seth was fairly energetic and chatted with a handful of people, and he even kept an eye on our girls while my parents and I chatted with the superintendent. This was a MUCH different scenario than two weeks prior when Seth was in bed and I was out on my own, fatigued with three children. We all left feeling good, not drained. And I’d dare to say, we all left with a sense that this was quite “normal.” Yes, “normal.”

So this is how I know we’re ready to move on to “new normal,” whatever that is.

Today is Seth’s last day working from home. He complained a bit this morning about his eyes being more sensitive to light than they had for a while. And he’s still working in our bedroom with every blind drawn. But he took a lunch break and we went to McDonald’s to celebrate, just like we did the first day he started working from home. We enjoyed chicken sandwiches, just like we did the first day he started working from home. Only this time, he enjoyed a shamrock shake with the baby.

 

 

 

The goodness began on January 6, two days before my husband got his eye cancer diagnosis from the ophthalmologist in Minneapolis, two days before we knew any of this was about to unfold.

I was scheduled to leave January 10 for a week-long trip to the Dominican Republic with Compassion International, so she left a lasagna and cookies at our doorstep for my husband and the kids to enjoy while I was away. She brought a card with warm and well wishes for my trip. I was blown away to say the least. Who does this? Who brings joy and surprises blessing in the form of a meal? Who knows how to love like this? Who honors another’s life and work without expecting anything in return? I knew now. I knew her name.

Little did I know, that was just the beginning.

Two days later, on January 8, my husband got the diagnosis. Choroidal melanoma. Eye cancer. To tell the truth, it’s all a bit blurry from there on out.

But here’s what I know for sure…

Before we shared the news publicly, the word spread like wildfire privately. Within 24-36 hours of Seth’s diagnosis, my mom told me that she and my aunts were planning and preparing a week’s worth of meals for my husband and three kids to enjoy while I was gone on the trip. So January 10, the day I left for the Dominican, my aunt and uncle delivered several meals to our home. Before the meals arrived, I’m pretty sure Seth was a little hesitant to receive them. “I’m not on my deathbed,” he said. “I can still cook.” “I don’t want them going to all of that work just for me.” But the truth is, my husband REALLY appreciated those meals. He and the kids ate them all week long while I was gone. He had enough stress to handle with the new eye cancer diagnosis to process, full-time work, and three kids to tend. The ready-made meals were a true relief.

My parents’ best friends transported me to and from the airport. When they picked me up at the end of my trip, Cyndy, my second mom, had a grocery bag full of food ready for us to bring home. They’d already done so much, and now a meal. I was blown away again, and we’d barely begun the journey. I’m sure Cyndy thought she’d provided enough for one meal, but it was enough for two. Truly, when you provide a meal, the love extends further than you know.

The generosity continued from there.

Warm muffins for our first trip to Mayo Clinic.

A big box of snacks and drinks for our week at the hospital.

Treats waiting when we got home.

Homemade chili, corn muffins and fresh strawberries from a woman we’d met two, maybe three, four times.

A crock pot of spaghetti and meatballs, enough for three meals, with oranges and homemade cookies.

Chicken enchiladas, beans, rice, and brownies from a neighbor.

Ready-to-bake fajitas with chips, queso and sweet popcorn snacks from a blog reader who also attends our church.

A frozen meal from our church meals ministry.

Stuffed pasta shells, salad, and homemade apple crisp from our sister-in-law and brother-in-law.

Frozen lasagna, garlic bread, and ice cream delivered to our doorstep courtesy of an aunt three hours afar.

A rotisserie chicken, fresh fruit plate, and Valentine’s cupcakes from our daughter’s friend’s mom, handed through the car window as we left cheer practice.

Two heart-shaped ready-to-bake pizzas, root beer and brownies from a family on our son’s basketball team.

Homemade cookies from a friend and mama of one of the boys on our son’s baseball team.

Hot tortilla soup, chips and sour cream left at our doorstep.

Lasagna, garlic bread and Seth’s favorite, Reese’s Peanut Butter Cups, from a friend who’s near and dear.

Pot roast, mashed potatoes, carrots and french silk pie transported two hours in a car straight to our table.

Homemade wild rice soup, cheesy bread, salad, and Italian Soda delivered to our door from a sweet college friend we hadn’t seen in far too long.

Yes, we have been blessed.

We have realized the power of a meal in time of need.

The meals that have been delivered, the meals that have sustained us through the past six weeks have been nothing short of a miracle, really.

We are grateful.

And we will remember.

When you deliver a meal to someone in need, anyone in need, it is a quiet and powerful expression of love.

 

 

 

On February 7, we returned home from a week’s stay at the hospital. By February 15, I was feeling fatigued and overwhelmed by the full-time responsibility for the kids and everything at home.

But here’s the thing…

I wasn’t fully aware of my fatigue and need for a break until the possibility of a break was brought to my attention.

That afternoon of the 15th, I spoke with my mom on the phone. She told me that she’d be willing to come and watch the kids for a day if I ever needed a break during this journey through eye cancer. I said “Yeah. Okay. I’ll let you know.” When I got off the phone, I thought about it more and realized I should have just said yes on the spot. So I texted her and told her yes. Please come. A day away will be great.

We agreed on the 19th. But my dad has a rare lung disease, never does great in the winter, and has been very sick with the flu the past couple of weeks. My mom needed to stay home to be with my dad until his new meds got into his system. So we moved my day away to the 20th.

I’m just going to say this…because it’s true. When you’re a mom and have three kids (or for that matter ANY number of kids) it can be hard to take care of yourself.

I needed a break, time away from the kids and all the responsibility. In this case, my husband Seth was out of commission because of his eye cancer. It was not an option for him to give me the break I needed. Most of the people we know have kids of their own to care for, and they work all week. While I’d had a couple offers to watch our kids, the truth was, I needed a big block of time away. I needed a whole day away. And the weekend wasn’t an option because the kids had basketball and volleyball. It was just too much to ask of a neighbor or really anyone else.

My mom had been helping my sister get re-organized at her house, and my niece and nephew had been really sick, too. Add to that, my dad was not feeling well at all. To be completely honest, asking my mom to watch my kids so I could simply “get away” for the day felt very selfish. My dad and sister need help more. Then there’s this vague gnawing away, this ugly feeling that I’m adding to my mom’s burden to care for everyone who seems to need her. And she never has or takes time for HERSELF. I don’t want to be an added burden. I want to provide relief. Or at least, I just want to be benign.

But I needed relief. Yes, I needed relief.

So my mom came the night of the 19th and stayed at our house for nearly 24 hours.

I went to my first writing group.

I crossed paths with the mama of the very first girl with down syndrome I saw for speech-language therapy back in 2000. We hugged big and caught up for a few minutes.

I worked out, climbing the stairs one after another.

Up. Up. Up.

Up. Up. Up.

Up. Up. Up.

I sought out David, the man with down syndrome we greet and high five on our way out of the gym everyday. Earlier in the week, he’d pointed out a pin on his hat that said his birthday was Friday the 20th. So I brought him the picture Maisie and my mom colored in honor of his special day.

I went to Walgreens and printed pictures from the day I met our sponsored child, Meranyelis, in the Dominican Republic. Because of the eye cancer, I was LONG overdue on mailing the pictures, and I didn’t want to break my promise to Meranyelis to send them as soon as I could. When all those pictures popped up on the screen, I sensed the holiness of the day all over again.

I picked up seven pictures I’d ordered from the day I met Charles last year in Haiti. Our sponsorship became official mid-December and I’ve sent a letter, but for multiple reasons, I hadn’t had a chance to print and send pictures to him yet.

I wrote two cards, labeled the back of each picture with child name and number and sponsor name and number, and stuffed them in an envelope to Compassion International. Yes, I thought. This is worth the day away.

I ate lunch by myself. Quietly. With no interruption. With nobody sharing or digging in my food.

I played on Twitter. Read some blog posts. Connected with a few of my favorite writers and fellow bloggers.

I went to the fabric store to pick up some white felt and elastic so I could make the Santa beard my oldest daughter was worrying about for choir the night prior.

I picked up a new box of eye patches and vitamins for my husband.

And I went to a movie of my choosing. Birdman. Just the way I like it. Artsy, a little edgy, well-crafted and deep.

Before I headed home, I stopped at a party store and picked up a birthday card for the birthday party my son was heading to in less than an hour.

On the way home, they began calling me. My mom first, then my husband. Where are you? When will you be here? Cooper needs to get to the birthday party. We need the card and the gift card. And you need to get home in time for dinner to be delivered. When are you coming?

Mom had offered to watch the kids for the day. And I needed a break, so I took her up on it.

It was worth it, so worth it. I was, and still am, incredibly grateful for my mom’s offer and presence those 24 hours.

But my day away was coming to an end.

I opened the door to a happier place than I’d imagined in my mind on the car ride home. Everyone was fairly settled. Sure, they needed the card and gift card. Sure, he needed to get to his birthday party. Sure, my mom needed to get back home to my dad. And sure, dinner was going to be delivered in 35 minutes. Sure, things were fairly well.

But I was still needed. Back. Here in this place I called home.

I was empty. I was filled.

So goes the emptying and filling.

Love your neighbor as yourself.