When we decided to share our journey through eye cancer on my blog, one of the promises I made to myself is that I would not compromise the integrity and tone of the blog for the sake of a factual medical update. With the exception of one, maybe two or three posts, I’ve been able to maintain elements of art, beauty, faith, inspiration and depth in this series. I’ve followed my heart and been organic about the 12 posts I’ve written prior to this one. But as I’ve reviewed everything that’s happened, everything that is, and everything that’s to come, I’ve realized we’re in the midst of another transition. It’s time for a simple post filled with lots of updates. So here goes, friends…a little bit of everything for those of you following the journey!
Random Update on Work
Our biggest update is that Seth returned to work today. Well, maybe the more accurate update is that he began working from home today, and will continue working from home for the next two weeks. As of right now, he’s scheduled to return to the office on Monday, March 2nd. All this back-to-work business means that Seth had to make an abrupt shift from sleeping 75% of the time to being awake most of the time (with the exception of a late afternoon nap, of course). It’s only day one of working from home, but so far, it seems he handled it well. I’m expecting an early bedtime tonight, though.
Random Update on Eye Sensitivity, Pain, Drops & Ointment
Seth’s had more continued eye pain and sensitivity than he expected. He’s particularly sensitive to bright lights, bright spaces, and sometimes even modestly lit spaces. One time, he got up from the living room couch and said his eye was bothering him because of the brightness. It was daytime, all the shades were closed, and no lights were on. As I type, he’s leaving the room because he has “bright painful flashing” in his eyes from the overhead light. He’s been using prescription eye drops 2x/day since the first day of hospitalization, and a special eye ointment several times a day. These help heal the eye and keep it protected, but he thinks they might also cause extra sensitivity. So for the first time, he did try some hours without the drops and ointment today. It seemed to help a bit.
Random Update on Eye Patch & Shield
Per Dr. G’s orders, Seth wears an eye patch and shield every time he sleeps. For two weeks, he’s worn the eye patch and shield 75-95% of the day because that’s how much he’s been sleeping. But today with the transition to working from home, Seth’s worn them much less, of course. The eye patch and shield make sleep safer and more comfortable for him. He’ll be wearing them until we return to the doctor in March.
Random Update on Lifting
Seth is not allowed to lift anything more than a 1/2 gallon. When you start thinking about everything you lift, you realize how light a 1/2 gallon is. I’ve caught him cheating a couple times, for sure. But grace is the name of the game these days, so it’s all good, right?
Random Update on Showering
At the recommendation of Dr. G, I’d been washing Seth’s hair salon-style in the shower and sink since his hospitalization. He got tired of all the leaning back and lifting that accompanied salon-style, so he decided to move our shower head to its lowest setting and give it a whirl. Now he’s showering as usual. It just takes a little longer trying to keep the water out of his eyes.
Random Update on Driving
Seth was directed to resume driving when he feels comfortable doing so. He’s definitely tempted to try it, but I’ve been encouraging him to wait. Every time we’ve driven somewhere, he’s complained of nausea, that it’s way too bright, and he’s had his eyes closed half the time. I’m pretty sure he isn’t ready quite yet. I feel like a mom talking to her teenage son on this matter, but I’d rather be safe than sorry.
Random Update on Valentine’s Day
Our family shared heart-shaped pizzas and a Disney Channel movie with a sweet neighbor girl Valentine’s evening. We sent the kids to bed promptly at 8:45 p.m. Then we broke out a bottle of champagne and “The Fault in Our Stars.” Call me foggy and overly tired? I, of course, remembered the movie was about a young man and woman who were sick and madly in love. But I neglected to recall one small detail – the young man and woman had cancer. And oh yeah…the lead character’s best buddy battled eye cancer and landed up blind. Guess I was watching with a different set of eyes when I saw that movie in the theater by myself last June, huh? I hadn’t remembered that part at all. Needless to say, we both ended up in tears even though it was romantic.
Random Update on Getting Seth out of the House
This past weekend, Seth wanted us to transition to a more “normal” Sunday. So he planned for us to get up, get ready, go to church as a family, and have lunch at our favorite restaurant. He expected he’d resume his sleeping 75% of the day routine when we got home from church. But when it came to Sunday morning, he woke up on schedule, but promptly fell into a deep sleep within a minute or two. He was sleeping so soundly, I knew there was absolutely NO way he was going to make it to church or lunch. So I let Seth and our oldest sleep, and I went to church and lunch with our girls. Tonight, same story with our son’s basketball. He’d hoped to resume some level of coaching, but when it came down to it, it was just too much, too soon.
Random Update on Getting Me & the Kids out of the House
I’ve been feeling a little stir crazy. It’s been cold and cloudy. I’ve spent 14 days straight in a hospital, hotel and our house with the exception of runs to bring kids here, there and everywhere. And I’ve been responsible for most everything. With all that and President’s Day off school for the kids, I knew I desperately needed a change of pace. So today, I took the kids to the Mall of America. We shopped and walked a bit. We ate at Panda Express. We had Coldstone (need I say more). And we shopped and walked around some more. The kids were exceptionally well behaved. At lunch, our oldest said “This is fun,” and the youngest said “This is good.” They all thanked me without prompting on the way home. The outing was a breath of fresh air for all of us.
Random Update on Getting Me out of the House
May I remind you that I’ve just recently been feeling a bit stir crazy? Yep. I’ve called in the big guns. My mom is coming later this week for one day to help with the kids. I’ll do a little housework without interruption. I’ll do a little private practice work so I can continue wrapping up those loose ends. I’ll get out for a movie by myself and maybe an errand or two. And perhaps I’ll breathe for a moment.
You have been so faithful to blog and fill us all in. What a whirlwind it has been for you all. Was it even a month ago that this all began? Our lives can change in an instant and we so often forget that. Our oldest kiddo began driver’s ed this week and that’s kinda freaking me out as we’re talking about those instants of potential change – God, please protect Ian behind the wheel and protect Seth and Amy from the myriad of issues they are facing now as the “afterwards” begins. May the kids be understanding, may the healing take place in Seth’s eye, may Amy have the strength she needs and may they both be able to see You working as they never have seen before. Thanks, God!
The kids are excited to see you. I’ve explained that they’ll need to help you out by “trying” to be a little more quiet in their voices and movements when you’re first home. Maisie will be the challenging one, because she is so “full of life” at her age. Wish I could be a live-in nanny, cook, and housekeeper for you for awhile longer, but I’m hoping that if you need me you’ll give me a call and I’ll come back. It will be nice for both of you to be “home”. Take it easy and enjoy each day. Love you very much!! Glad this week is done and that you’re on to great days ahead!! XOXO See you soon! Mom
Amy thank you so much for keeping this post! Means a lot to those of is concerned with you all and seths progress ! Love to you all!
One week down, one to look back on with gratitude for the care and sensitivities of the Mayo staff. I bet your kids will be so happy to see you and your own home and bed will give you some comfort. Take care of each other, you have a chance to be together that is quite rare in the business of your parenting and working years. Love to all.
Glad to get the report and hear that all is going well. Get some rest 🙂
You two are doing great…will keep you in our prayers and look for your updates. Peace to you