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Monthly Archives: January 2015

The Melody of Living Amidst the Dying

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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.

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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.

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

 

Mary Bragg - Amy, I somehow understand your confusion. I went through very close to the sam.e thing with Doug. You have to trust and believe they are e doing what is best for Seth. I pray so.com. As the day looms I pray you have the courage you need. God bless MaryFebruary 1, 2015 – 11:59 pm

Amy - Thank you, Raquel. Glad to hear you felt like you were “walking along beside me.” Sometimes it’s hard to know if I’m actually conveying what I intend to convey. So appreciate your faithful prayer support.February 1, 2015 – 10:18 pm

Denise Faul Kesanen - Brian and I have been following your blog and are praying daily for your beautiful family and for God’s healing touch on Seth’s eye.February 1, 2015 – 6:15 pm

Cathie 'Hardy' Pearson - Once again, Amy, I am in awe of your ability to put your thoughts and feelings into words! Still, at the same time, so sorry for what you & Seth are having to go through yet amazed at how beautifully you are handling it. Continuing to pray for God’s strength and peace as you navigate this difficult journey in your lives.January 31, 2015 – 7:46 pm

Susan Baunsgard - Dear Amy
You have a wonderful way of putting in writing what so many other people also feel as they go through the unwanted experience of dealing with cancer. I especially related to that sick feeling and a sense of not being able to process even simple things as how to get from point A to point B. God bless you as keep putting one foot in front of the other. It isn’t easy and I so admire your ability to look about you and see that other people are also going through their life altering struggles. I will continue to pray daily for Seth and you.January 31, 2015 – 6:03 pm

Rachel Arntson - Oh my! What an article. When you described that sick feeling in your stomach, it all came back. That sick feeling is just so tough and yet, you go on. Just know I am thinking about you. You also had mentioned something about how life changes. I remember our nurse for Kelsey saying that “you will find a new normal.” I really wanted to slap her right then. There was nothing about that journey that I wanted to call normal, but she was right. We found a new normal, and it was beautiful – different but beautiful. Then with Doug’s journey, I was just so concerned about him losing his voice as I’m sure you are worried about Seth’s vision. I can only pray and think about your family often as you go through this. If you EVER need anything, please count me in.January 30, 2015 – 2:07 pm

Theresa Glapa - Amy, I hope all goes well with you and your family. You have brought back memories of our families times at mayo and fairview medical appointments for my father . Peace be with you. Terry GlapaJanuary 30, 2015 – 12:23 pm

Raquel - Beautiful and heart-breaking at the same time. All the details you capture make me feel like I was walking along beside you. Praying for you and Seth and the 3 littles.January 30, 2015 – 7:50 am

Acclimating to the Medical World

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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.

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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.

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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.

This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page, www.divineinthedaily.com.

greensig

 

 

 

Amy - I did have an amazing trip, Jill. Thank you so much for your prayers and for checking in. :) AmyFebruary 1, 2015 – 10:15 pm

Jaimie West Bowman - Amy, this is so good. I love that you are sharing this journey because so many people can relate. I love how you described Maisies innocence and the dichotomy between her childhood and what was happening around her. Can’t wait to read more, although I’m so sorry you guys are having to face this.January 30, 2015 – 3:34 am

Tom Baunsgard - You captured the essence of dealing with this whole ordeal with beauty and grace. I’m sure having Maisie along will continue to provide you and all those around you with a distraction from the realities all are facing. That little smiling face will melt hearts and being a great blessing! We are praying for you all.January 29, 2015 – 7:01 pm

Mary Bragg - Reading and prayers SethJanuary 29, 2015 – 6:44 pm

Jill Tucker - Sounds as though you had an amazing trip!! Praying for your family and for miraculous healing! Love, JillJanuary 28, 2015 – 6:15 pm

The Apple of My Eye

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Less than 48 hours before I was scheduled to leave for my trip to the Dominican Republic with Compassion International, my husband called to share the news that he has choroidal melanoma. Eye cancer. I’d just finished my morning workout when he called, and had a whole day of packing and preparing planned for the day ahead. But as I talked to my husband at the entrance to the gym, I began to feel sick. Literally sick. Packing and preparing for my upcoming trip was urgent, yes. But this was life altering and needed my attention today.

The day before, my husband, Seth, had gone in for a routine eye appointment. He shared with the optometrist that he’d been experiencing constant, but dim strobing lights in the corner of his right eye. She evaluated further, told him he likely had a detached retina, and made him an appointment with an ophthalmologist the following morning at 8:00 a.m. We were told he’d need surgery to repair the detached retina that afternoon, so I was ready for anything the way it was. Little did we know, it wasn’t a detached retina at all. It was eye cancer.

Seth didn’t go into work that day. And I didn’t pack or prepare for my trip as planned. We spent time together. We processed together. We ate lunch together. We called our parents together. We made a few key contacts together. We rested together. And in the evening, we shared the news with the kids together.

Needless to say, by the time Friday came rolling along, I was in panic mode. I now had one day to do what I’d originally planned to do in two days. Not only that, I was battling confusion and emotion related to the fact that I was about to leave on the trip of a lifetime writing on behalf of Compassion International, while also facing the reality of my husband’s cancer.

Immediately following Seth’s diagnosis, the ophthalmologist had contacted Mayo Clinic to see if Seth could be scheduled with one of the nation’s leading doctors in the treatment of eye cancer. Apparently, the doctor hadn’t been taking new patients, but they really wanted to see if there way any way Seth could get in with him. Fortunately, we got in. Well, at least we got penciled in for January 29-30. Our appointments weren’t confirmed, but likely.

My husband and I agreed. While this was absolutely NOT an ideal scenario, there was NO reason for me to cancel my travel plans. The appointments had been penciled in at Mayo. In the meantime, there was nothing we could do but wait. So we decided to proceed. As planned. I would go on the trip with Compassion International and live my dream of writing on behalf of children living in extreme poverty.

So yes, back to that Friday when I was packing and preparing like a maniac. I was non-stop all day long. In fact, it wasn’t until 9:00 p.m. that I finally finished everything and tucked myself into bed. Unfortunately, I’d packed, prepared and worked myself like a maniac so much so that I didn’t get a minute of sleep that night before the trip.

Seth and I refused to let this diagnosis get the best of us. I wanted that to hold true for my trip to the Dominican Republic with Compassion International, too. So Saturday morning, with zero minutes of sleep in me and a big trip ahead of me, I said good-bye to Seth in the dark of 2:45 a.m. and left to meet family friends who had graciously agreed to drive me to the airport. Later that afternoon in the Miami International Airport, I published a blog post explaining the state of my heart and soul at the start of this trip that meant the world to me. It was vague, but as specific as I could be without revealing the recent eye cancer diagnosis. My goal was to embrace the trip whole-heartedly, so I was bound and determined to keep it free of cancer talk.

The trip was amazing and an honor of a lifetime. I’d do it all over again in a heartbeat. But I shouldn’t have been surprised when I experienced another near sleepless night mid-way through the trip and wasn’t able to get the day’s blog post published as I’d hoped. I’d come to the end of myself. I was basically a wreck for the first part of a day. I was on this trip to give, yes. But I also needed to learn how to receive. Planning, preparing and executing had been close companions. But now, I really needed to surrender it all. God was clearly at work, transforming me simultaneously and uniquely through my husband’s eye cancer and the trip of my dreams.

It’s been ten days since I returned. We’ve already been to Mayo Clinic for three nights and 2 1/2 days of appointments with doctors. I’ve spent most of the past ten days in a foggy, exhausted state. My emotions have been all over the place. Neutral, angry, sad, distant, distracted, empty, and finally two days ago, back to normal for the most part.

We’ve debated extensively how to share medical updates with family and friends. A Caring Bridge site was recommended, but for a couple reasons, we decided it wasn’t a fit for us. Seth considered starting a blog to document the journey. He even brainstormed titles, had a vision for his posts, and researched available URLs. But he decided the commitment to maintain a blog while managing his health and work would be too difficult. That left us with my blog. While this blog was never, ever intended as a place to “update family and friends about our life,” it is a public forum where you can pop in and read as you wish.

So we agreed my blog would be the best place to share this journey. But I still needed time to discern. I pondered in silence through days of exhaustion and uncertainty. I journaled the days I wanted to write, but wasn’t in any mood to type or edit. I contemplated a scenario in which I’d remain completely silent about Seth’s eye cancer on the blog, but realized quickly that a silent approach isn’t in line with who I am as a writer and would ultimately feel disingenuous to my readers. Plus, I was confident that this journey fit perfectly within my new blog vision, to “love what you live,” even when it’s less than ideal.

Mid last week when we were at Mayo Clinic for three days, we finally decided to make the news public on Facebook. When 230+ people responded with words of encouragement and promises of prayer, I knew right then and there that we had to find a way to update the caring circle of family and friends around us. Practically speaking, I’m in no emotional state to field non-stop calls, texts and emails. So the answer became clear from all angles – blog it will be.

I’m approaching this series gently, with as few expectations as possible. Because the truth is, we have no idea what to expect along the way. So I’ll write when I want to write, when I need to write, and when I’m able to write. This series will include basic factual updates, but won’t be full of jargon you’d have to look up in a medical dictionary to understand. This series will include insight into my feelings throughout the journey, but won’t reveal every detail of my private thought life as wife and caregiver. And last, but not least, I’ll definitely be telling stories and making observations about the world of medicine and cancer, caregiving and loving, believing and trusting in God’s goodness, even when life’s thrown you a major curveball. And yes, there will be vague references to patients and doctors, spouses and families, visitors and helpers along the way. Because we’re all on this journey of life together. We’re all here to learn from one another and love one another, even when life’s hard.

So please join us here for updates as you wish. For the next three to four weeks, I’ll be blogging our journey through eye cancer. After that, posts will be occasional as significant updates arise. As with any major series I write, I’ll put “The Apple of My Eye” graphic on the right sidebar of my blog. Anytime you’re looking for an update, get on your laptop, click the apple graphic (picture) on the right side of my blog, and it’ll connect you to this post. Scroll down to the bottom (just below), and I’ll include links to ALL posts I’ve written in the eye cancer series. The most recent post will, of course, always be on my home page.

He’s positive. He’s upbeat. He expects to get through this without a hitch. He’s approaching this with bravery, courage and hope for best possible outcomes. He’s not looking for pity, sadness, despair or hopelessness. Plentiful words of affirmation will suffice just fine for my man. Yes, he has eye cancer. But he’s still the apple of my eye.

Other posts in this series:

Acclimating to the Medical World (1/27/15)

The Melody of Living Amidst the Dying (1/29/15)

On Caregiving, Surrendering and a Gold Bottle Cap Plaque (2/1/15)

Radiated: Hospital Time Lapse Day One (2/2/15)

Mourning and Rejoicing in Sickness and in Health (2/3/15)

When Beauty Falls (written 2/4/15, published 2/5/15)

Random Thoughts from the Hospital (2/5/15)

Radiated: Hospital Time Lapse Day Five (2/6/15)

What No Normal Looks Like from Here (2/9/15)

Sleeping, Dreaming and Daydreaming (2/11/15)

What True Love Is (2/13/15)

Random Updates on Health and Home (2/16/15)

The Emptying and Filling of a Caregiver’s Soul (2/23/15)

A Meal is a Quiet Expression of Love (2/25/15)

Moving on to “New Normal” (2/27/15)

Cancer-Killing Optimism (3/2/15) (guest post by my husband, the patient)

Mayo Round Three & Signing Off For Now (3/5/15)

Getting New Glasses (3/25/15)

Like and Unlike Any Other Day (5/23/15)

The Last Thank You (6/3/15)

Waiting on Shrinking (8/15/15)

A Tumor. A Piano. Princesses. And Waiting. (12/14/15)

greensig

 

 

 

 

Amy - Thank you, sweet Jennifer. You are faithful and dear to my heart.January 27, 2015 – 1:28 pm

Amy - Wow! That’s fantastic. Thank you so much, Mark, for your thoughts, prayers and positive, specific focus towards Seth. We appreciate it very much.January 27, 2015 – 1:27 pm

Amy - Thank you, Kim, for your generous and positive words.January 27, 2015 – 1:26 pm

Amy - Thanks Monica. I will definitely let you know if/when we need some help. Appreciate you so much.January 27, 2015 – 1:25 pm

Amy - Thank you, Annette. You are always a blessing to me. :)January 27, 2015 – 1:25 pm

Amy - Hi Amanda! It’s a pleasure to meet you and good to hear you had positive outcomes with choroidal melanoma so many years ago. I mentioned this on my response to you on Facebook, but had they not been able to get us in at Mayo, they were going to send us to Philadelphia as well. Had that been the case, we probably would have seen the same doctor you did. Thanks for following, and I’m sure we’ll get to “know” one another through the journey. Best wishes to you. :)January 27, 2015 – 1:24 pm

Amy - I do, sweet Sandra. Thank you for your steadfast prayer support.January 27, 2015 – 1:22 pm

Jennifer Camp - Dearest Amy, praying for you both, sister. xoJanuary 27, 2015 – 3:10 am

Jessica Revak Milkes - Thank you Amy! I hung onto every word of that. I love the love you two share… It’s heartwarming :)January 27, 2015 – 2:56 am

Meigan Thornton - :)January 27, 2015 – 2:24 am

Melissa Wilkowski Sterling - You guys are right to expect the best possible outcome, having seen a couple of these in my career from what Seth posted on FB sounds like you guys got the best possible prognosis/treatment plan that you could get. Good luck to you both, you’ve got this.January 26, 2015 – 9:50 pm

Carol Femling - I’ll see you all on Sunday. Looking forward to staying with my sweet grandkids!January 26, 2015 – 9:44 pm

Carol Femling - Love you all to the MAX!!! Great choice!! And by the way, Seth’s awesome attitude brings me to tears! XOXOJanuary 26, 2015 – 9:19 pm

mark parrish - Amy- You are a very talented writer! I look forward to staying in touch with you through your series of writing. Please let Seth know he is in my thoughts, prayers and has been my dedication in all my yoga classes. We focus on one person and send positive energy towards that individual. Lots of good vibes coming your way!January 26, 2015 – 8:52 pm

Gretchen Wendt O'Donnell - Uff da, Amy. We’re praying.January 26, 2015 – 8:51 pm

Mary Katherine Boyle - Love and light to you and your family.January 26, 2015 – 8:49 pm

Lynne Hackman Kellerman - Please give each other a big hug from me.January 26, 2015 – 8:09 pm

Kim F. LeDoux - Life takes us on many journeys…. Sending you and Seth strength, love, and healthy healing prayers to help you through yours. He’s definitely got an amazing partner to help him through. Thank you Amy!January 26, 2015 – 7:56 pm

Monica Palmer - so very proud of you & Seth! I can’t express enough how willing I am to help in any way! You are all on my heart and mind continuously! Pslam 16:8-11 HUGS!January 26, 2015 – 7:52 pm

Annette Tryon - Will be following and know this will have a positive outcome for your beautiful in every way family.January 26, 2015 – 5:47 pm

Amanda Hill - Please get my contact info on facebook (I friended you) and call me! I’m a friend of Sandy’s and an eye cancer survivor. I’d love to share positive stories. When I went through it I knew no one and was scared to death. But it’s survivable, and I’d be glad to answer any questions you might have.January 26, 2015 – 2:58 pm

Sandra Heska King - Love you, girl! You know I’m praying. xoJanuary 26, 2015 – 2:25 pm

A Picture is Worth a Thousand Words

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It’s true, you know. It’s really true.

A picture is worth a thousand words.

I love taking pictures. Photography is the one thing besides writing that I’ve done consistently since I was a little girl. I just purchased my dream camera and lens in September 2014, and was particularly looking forward to using it on our sponsor trip to the Dominican Republic with Compassion International. So you can imagine how upset I was when I realized I’d forgotten my charged camera battery in the hotel room on the most important day of our trip, the day we met our sponsored children. It had been a really tough morning for me the way it was. The fact that my camera battery was missing was the last straw.

Looking back, I realize that perhaps God was releasing me from photography that day. Yes, He knows, acknowledges and loves that I love photography. He built that love in me. But I think God wanted me to step away from the camera so I could give and receive whole-heartedly. He wanted me to step away from the camera so I could love, serve and just BE with my sponsored child, Meranyelis.

Here’s the awesome thing. God provided. In big and mighty ways.

God knew that I’d be devastated if I didn’t have any pictures from the day with my sponsored child. He knew how much I value those treasured moments. And He knew how often I’d refer back to those pictures, reliving our time together for months and years to come. So He put a photographer in my path that morning, a photographer who was willing to take photos for us anytime we wanted as we went about our day.

God sent Lairsz Johnston to photograph the day I spent with my sponsored child, Meranyelis. And boy, did Lairsz capture some amazing moments! I continue to be blessed by his art. Not only is Lairsz super funny, but he’s full of wisdom and willing to go deep at the drop of a hat. Thank you, Lairsz. You are amazing.

And thank God for sending Lairsz when all of my “perfect” plans seemed to be crumbling in front of my eyes.

A picture is worth a thousand words.

I can’t think of a better way to wrap up this blog series about my sponsor trip to the Dominican Republic with Compassion International than to share some of the beautiful photographs Lairsz captured the day I met Meranyelis. These photos are a gift. They show my heart for children living in extreme poverty. They show the impact of sponsorship on a sponsored child. They show what it’s like to take a sponsor trip and meet your sponsored child face to face. And they show the heart of Compassion International.

This is what sponsorship looks like. This is what sponsorship feels like. This is Compassion International.

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Will you sponsor a child through Compassion International? It’s $38 a month to sponsor one child. Sponsorship releases children from extreme poverty, and provides them hope for a better future. As you can see from the photographs in this post, the investment is worth every penny and more. So click here, take a peek at all of the children who are waiting for a sponsor, and take a risk. Change a life. Become a sponsor.

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This blog post is part of a three-week series I’m writing about my journey to the Dominican Republic with Compassion International. Click here to read all the posts from my series.

If your heart has been touched by the words in this blog post, would you be so kind as to share it with friends and family on Facebook, Twitter, and via email? I would be oh so grateful. The more we spread the word about Compassion and the great work they’re doing, the more sweet children will be released from extreme poverty. Thank you, friends!

greensig

 

 

 

Karen Selby - Hey Amy, I was finally able to sit down and read all your posts. Thank You! Your writing is amazing and you reflected several things that felt when I met you and it is awesome to read the work God did in your heart as you progressed through this. The post about being empty reminded me of a time when someone said and I remembered and could find no other words except to repeat it when I needed it. God can only fill empty vessels. The giving and receiving is an area I am growing in and I will message you about the 3rd.January 24, 2015 – 9:36 pm

Amy - Thank you, Yvonne. It’s an honor to advocate for the children and Compassion. I’m tremendously humbled when I consider the fact that I’ve been able to experience two sponsor trips with Compassion. I’d take the trips again in a heartbeat, and will recommend them without reservation to anyone who asks me about my experiences in the future.January 20, 2015 – 8:59 pm

Amy - Thank you, Bri. It was a true delight to spend the day with her. Words don’t adequately express how good it was for my soul. That’s why I love the pictures. They say it all. :)January 20, 2015 – 8:42 pm

Yvonne Reynolds - Absolutely beautiful, the post, the photos, and your heart for Compassion! Thank you for sharing your journey with all of us!January 20, 2015 – 12:19 pm

Bri McKoy - I love how much you loved on and engaged your sponsored child, Amy! These pictures capture both hearts so beautifully! XoxoJanuary 20, 2015 – 10:53 am

How a Formerly Sponsored Child Taught Me Anything’s Possible

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On our last day in the Dominican Republic, Yulesi, Diana and Jonathan came to the front of the room to share their testimonies with our group. All three grew up in extreme poverty as children. All three had been enrolled in Compassion International’s Child Development Sponsorship Program. And all three completed the program successfully. Yulesi is in medical school and wants to be a cardiovascular surgeon. Diana will begin college in April and wants to be an ambassador. And Jonathan already obtained his college degree; he hosts groups who come to the Dominican Republic to meet their sponsored children and see the good work Compassion International is doing with children living in extreme poverty. As a child, Jonathan received from Compassion International. Now, he’s giving back to the organization by leading groups like ours.

The formerly sponsored children shared powerful words…

“I don’t care about money, I just want to show God’s love.”

“Financial support is important, but a single word can change a life.”

“Don’t conform yourself with what THEY do.”

“Don’t wait for people to tell you what to do.”

“Be yourself wherever you are.”

My heart was on fire. I wanted to know what was next. I wanted God to reveal His plan for my life. I wanted to continue this good work for Compassion and children living in extreme poverty. And I wanted to do everything I could to ensure that the future I desperately longed for would happen.

But here’s the thing. I’d just spent the week learning that God’s desire is for me to be fully surrendered to His plan. He doesn’t want me to know what’s ahead. He doesn’t want me to have my life perfectly planned out. He doesn’t want me to schedule and prepare and execute everything perfectly in advance. He just wants me to remain open, with a heart willing to listen, obey and serve. He wants me to trust that everything He has planned is better than anything I could ever imagine.

So I clung to the fire that rung true in my soul. I encouraged the formerly sponsored children who were now fully-functioning adults and leaders. I gave them hugs. We talked. And we took pictures together so we could remember.

All the while, I had an idea brewing in my mind. I wanted to know if it was possible, or if I was just dreaming up crazy things. I had a hunch that one of these three formerly sponsored children could provide insight into my idea.

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Jonathan said something to our group that struck a chord with my soul. So after we cleared the room and before we left for the afternoon, I just knew I had to pull him aside. I wanted to ask him a couple of follow-up questions, and I needed to know if my idea was possible or totally far fetched.

So I pulled Jonathan aside. Our interaction was two minutes long at most. Two minutes with Jonathan – a formerly sponsored child and now a successful, fully-functioning adult – was all I needed.

I asked him a couple questions about his presentation at lunch and quickly realized that I needed to be more straight forward. Within seconds, I cut to the chase and found myself sharing the idea with Jonathan. I just wanted to know if it was possible.

Jonathan’s eyes lit up as he confirmed, “Yes, it’s possible! I will pray for you. God bless you!” We smiled the biggest smiles. We hugged. And we parted ways.

I felt hope. I knew this day-old idea was possible. And I began wondering if it was from God.

Later, I asked Jonathan for a picture. Because I’m big on pictures for remembering. And I wanted to remember this moment just in case, just in case this was God’s idea and Jonathan, a formerly sponsored child, was the one who encouraged me from the start. I wanted to remember this moment for the future, for when I needed to be reminded that anything is possible.

The greatest gift we can receive from a formerly sponsored child is to know, without a doubt, that anything’s possible.

I traveled 2,000 miles to hear Jonathan testify to God’s truth…

Anything is possible.


Compassion International provides hope to children living in extreme poverty. Through their holistic child development model, they teach children that anything is possible. Will you sponsor a child today? It’s $38 a month and worth every single penny and more. Click here to check out the Compassion website where thousands of children are waiting to be sponsored. 

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This blog post is part of a three-week series I’m writing about my journey to the Dominican Republic with Compassion International. Click here to read all the posts from the series!

If your heart has been touched by the words in this blog post, would you be so kind as to share it with friends and family on Facebook, Twitter, and via email? I would be oh so grateful. The more we spread the word about Compassion and the great work they’re doing, the more sweet children will be released from extreme poverty. Thank you, friends!

greensig

 

 

Vicki Thunstrom - I love this Amy! I can’t wait to see what God is going to do through you! :)January 19, 2015 – 3:29 pm