It’s been five weeks and one day since the doctors told my husband he has eye cancer. A lot has happened in one short month. In fact, I told you Wednesday that I wanted a do-over.

Let me do this month all over again.

Let me try again, God.

Can’t we get it right this time?

But time machines don’t exist. We can’t press rewind on life. We can’t go back and change the course of history. And we can’t deny or shame God for what He’s allowed. There isn’t a simple magical formula for going back and erasing all the things we’d rather not have experienced in life.

But we can embrace the mystery. We can trust, hope and believe that good can and will come from anything. We can relive moments and see beauty in all things. We can choose to live what we love, and love what we live.

I’ve learned so much about love on this journey through eye cancer.

Tomorrow is Valentine’s Day and my husband’s still upstairs in bed resting from last week’s radiation and hospitalization. Tomorrow is Valentine’s Day and he still has to wear an eye patch and shield whenever he sleeps (which is still most of the time). Tomorrow is Valentine’s Day and my husband won’t be able to pick up our baby girl and spin her around because she’s too much weight for the stitches in his eye. Tomorrow is Valentine’s Day and we won’t know if the tumor is shrinking until June. Tomorrow is Valentine’s Day and we won’t be celebrating with flowers, romantic rendezvous, sexy lingerie or 50 Shades of Grey.

Yes, tomorrow is Valentine’s Day. We’ll enjoy a special meal out…as family. We’ll send the kids away…to their bedrooms. And we’ll hunker down quiet…on the couch. My husband with his eye patch, and me with my fleece pajamas and fuzzy socks. We’ll watch some romantic flick I chose from Redbox, and if we’re lucky, we’ll enjoy a glass of wine or champagne before we fall asleep all too early.

When we wake up the next morning, when we transition into the next two weeks of my husband working from home, we’ll remember the love we’ve shared and the love we’ve been shown. And we’ll know, more than ever, what true love is.

Love is patient.

Love is sitting for hours on end in waiting rooms and hospital rooms. Love is remaining silent while you watch a loved one come out of anesthesia. Love is caring for kids when a loved one simply can’t. Love is holding and lifting, getting wet and washing hair day after day when nothing about you says stylist. Love is understanding sleep patterns that never seem to end. Love is listening and forgiving when a loved one shouts out of fatigue for the poverty, sickness and misunderstood dreams of this world.

Love is kind.

Love is delivering a meal to someone you’ve met two times. Love is leaving a gift and words of encouragement for someone you barely know. Love is gracing someone with your presence, caring for someone with a knock at the door. Love is a hug, a look, a call, a text expecting nothing in return.

It does not envy.

Love is being glad when your loved one’s lavished on. Love is resting confidently when your loved one’s receiving more meals, more gifts, more paid time off, and more attention than you. Love is chilling out when your loved one’s getting a lot more sleep than you. Love is extending grace to yourself when your sick spouse is funnier and wittier than you are.

It does not boast, it is not proud.

Love is remaining humble at all times. Love is bowing down to meet the needs of others. Love is remembering that you, too, will need care someday. Love is knowing that anything could happen in an instant. Love is recognizing that healing, restoration and reconciliation is not up to us, but God.

It does not dishonor others.

Love considers whether a picture would be appropriate to share on Facebook or not. Love does dishes. Love changes eye patches and dirty sheets. Love acts without recognition. Love keeps things private when it would be easier to shout out wrong-doings to the world. Love behaves bravely, boldly and beautifully.

It is not self-seeking.

Love is staying home when you’d rather go out. Love is forgoing your night to make dinner for someone who really needs it. Love is going out of your way to buy someone a piece of cake. Love is allowing him to nap while you do everything else. Love is waiting in quiet spaces while you’d rather be moving right along with your own agenda. Love is laughing when you’d rather cry.

It is not easily angered, it keeps no record of wrongs.

Love gives. Love forgives when it’s really hard. Love remembers, but moves on anyway. Love sends emails, texts, messages and cards. Love expects nothing in return. Love graces those who don’t respond they way we’d like. Love never presumes or assumes. Love waits.

Love does not delight in evil but rejoices with the truth.

Love is brutally honest. “You need to get out of bed now.” “You have no idea what you’re doing.” “You need to take care of yourself.” Love goes above and beyond. “You’re brave.” Love is wise. “You’re going to make it through this.” And love rejoices long before it’s justified. “You will celebrate.” “Spoiler alert: the tumor is shrinking.”

It always protects, always trusts, always hopes, always perseveres.

Love keeps on keeping on, even when it wants to give up. Love presses into hard things, ugly things, unseen things. Love delights in beautiful small things. And love knows it’s never easy, but always worth it.

Love never fails.

Love keeps the end game in mind. Love is a legacy. Love is faith with skin. Love travels and draws near in all things, at all times.

And now these three remain: faith, hope and love. But the greatest of these is love.

 

 

Since we arrived home from the hospital, many have asked me how Seth’s doing. My default reply is that he’s been sleeping a lot, so yeah, I guess he’s doing okay? Seth slept 75% to 95% of the time the first two days we were home. The past two days, he’s slept 75% of the time. I did the basic math at dinner tonight, and that means he’s been sleeping an estimated 18 hours out of each 24 hour period. “Seems about right,” I said. Seth smiled with little reply as he walked back upstairs to bed.

I trust Seth is sleeping so much because the trauma his body has experienced has worn him down. I trust Seth is sleeping so much because some claim radiation makes you tired. I trust Seth is sleeping so much because the invisible emotional, mental and spiritual toll cancer has on an individual has to be managed somehow. And I trust Seth is sleeping so much because it’s helping him heal.

Since Seth was admitted to the hospital 10 days ago, I’ve been having an unusually large number of dreams about my trip to the Dominican Republic with Compassion, about children and swarms of children. Last night, the dreams went even further back to the dream camera I purchased five months ago. In the dream, I was on location for a photo shoot at a hotel or a building that was very large with long hallways and a lot of elevators. I arrived at the shoot only to realize I’d forgotten my two lenses, so I started heading back to find them, only to forget where I’d left them. It was an ugly cycle of forgetting and not knowing. I had the body of the camera with me, but I was getting distracted by children and people and all I really wanted to do was take pictures. But I couldn’t because I didn’t have my lenses.

I trust I’m dreaming so much about my trip to the Dominican, Compassion and children because I haven’t had an opportunity to fully process the trip. I trust I’m dreaming about my trip to the Dominican, Compassion and children because part of me wants a do-over. As in, bring me back to the morning of January 8, 2015, and let me do the whole month over again, but this time, take away the eye cancer part of it. I trust I’m dreaming about photography because my brain is still way back in September when I bought the camera, way back in December when I stopped seeing patients for speech therapy. I haven’t had a chance to fully process all the old things with all the new things. And the lenses? Well, I’m not sure I have clear sight of anything right now. I’m ready to experience and photograph this new life, but I can’t quite get my bearings. I still need those lenses. I trust God’s giving me vivid dreams to help me process all of this.

Since we returned home four days and eight hours ago, I’ve been daydreaming a lot more than I would’ve ever imaged, especially given the circumstances of eye cancer, caregiving and heavy unexpected responsibility for home and the kids. Yet, I’ve allowed my brain to go there, to places in the future, to spaces I’ve yet to see. I’m still experiencing some of that emptiness, that hollowness I wrote about two days after Seth’s eye cancer diagnosis and the day I left for my trip to the Dominican Republic, on January 10. But I’m beginning to wonder if that’s part of what new normal will look like. What’s next isn’t easy. There’s not a clear paved path, but it is good. In fact, I’m believing it’s very, very good. I’ve sensed strongly for a couple weeks now that I need to go back and weave a few more threads together from the past three years. I know exactly which threads need to be woven. It’s just a matter of sitting down, doing it, and waiting patiently to discern what’s next.

I trust I’m daydreaming so much because I’m clinging to hope for a better future. I trust I’m daydreaming so much because God wants me to believe and trust that He has a very specific and good plan for the rest of my life. I trust I’m daydreaming so much because right now, I’m in a space where I’m living and acting in complete faith. Very little is known. And I’m a planner, organizer, and analyzer. So daydreaming is my way to bridge all of the unknowns with hope for a bright future. I trust I’m daydreaming so much because when it is time to move on to some semblance of “new normal,” I’ll have even more direction and clarity about what’s next. There will be trouble. But it will be good, as promised. God will heal. All things will be made new. And we’ll continue to rest in peace knowing there’s hope. For tomorrow is a new day.

 

 

 

 

Words turned into sentences. And sentences turned into paragraphs. That’s when she knew it was time to write again. It’d only been 60 hours since she published last, but it felt like a week. Yes, that’s how she always knows it’s time to free the wild beast of her brain that’s constantly moving, constantly drafting, constantly writing the inner-workings and outer-workings of life.

They arrived back home in relative peace and quiet that Saturday, long before the oldest two dazzled the doorway with energy from basketball and a birthday party. “Welcome Home Dad” strung across the mud room wall. The floors were clean. The counters pristine. A “Get Well Soon” balloon floated above the kitchen island along with Elmo and a big Valentine heart. His favorite treats – Reese’s cups, Reese’s Pieces, and Diet Coke – sat with an about-to-bloom summer yellow plant. Two Valentines’ boxes had been crafted with care, chocolate chip cookies and pink frosted cupcakes filled the countertops. Mom made the place comfortable while they’d been at the hospital. That was for sure.

Her husband went to bed, first thing. So did three-year-old babe. She sat, wrote a bit, who knows what. Her body felt slow, she wasn’t sure what to do or where she fit in this nothing’s-normal-anymore home of hers. Seven and a half weeks had passed since she wrapped up her last day of therapy, but new normal’s never set in. They had no clue, no clue, that they’d be facing cancer when they decided six months ago that she’d stop working to stay home and pursue far-fetched dreams of writing and photography. But now, yes now, she was here, in no normal land, back home after her husband’s week-long eye cancer treatment. She let herself sit. Just sit. This wasn’t normal, but it was new.

Nap time passed. Her oldest arrived back home from basketball. Her husband woke up a bit from his groggy slumber. They ate a dinner of the weeks’ leftovers and he returned to bed. He apologized to his son; he’d promised a movie together on the couch, but he just couldn’t. He needed to sleep. After a while, she tucked babe all quiet into bed and spent time with her son as best as she could. She knew she wasn’t the same as dad, but heck, one parent’s better than none.

She awoke early the next day, before the crack of dawn. Babe was awake, loud and a little needy. Dad was asleep, quiet and a little irritated with the noise and activity. So mama brought babe downstairs to play and do whatever, because that’s about all she could handle. This would’ve been a church day, but her son was being picked up for basketball and her daughter needed picking up from that overnight birthday party. So she let thoughts of church pass by, even though, even so.

She’d changed her husband’s eye patch and shield earlier that morning when babe awoke. His eye was puffy, really puffy. They weren’t sure why, but it was really itchy too, so he took his pain meds and got back into bed for a long day’s rest.

A friend brought a crock pot full of spaghetti sauce, cookies, and oranges peeled, ready to go. Thank God, she thought. She really hated to cook, and was in no mood to do so considering the circumstances. Her husband came to greet the visitor briefly, stayed long enough to eat and that’s it. He went back upstairs for more rest, and she gathered the leftovers, enough for another meal, maybe two.

The rest of the day was haphazard and semi-restful. The kids played and watched too much television. She did a little this and that, picking up laundry that had accumulated in the past 24 hours, putting dishes in the washer, and gathering piles of Polly Pockets babe had strewn across the couch. She struggled for a bit of normalcy, for a bit of new normal, so during nap time, she re-opened books for the business that’s closing slower than expected, and pushed that much closer to the finish line. She invited the kids to play Uno; even babe played most of the while. Color and number matching is soothing, even for a three year old who doesn’t have much of a clue yet.

Her husband slept, then slept some more. She kept checking and checking, but there was nothing he wanted to do but stay in bed. Occasionally, she’d enter and he’d be in bed with headphones on, listening to a podcast with his eyes closed, or catching up on Game of Thrones season three. But sleep was his activity of choice. So she let him be until 9:30 p.m. when she invited him down for a new episode of Walking Dead followed by a night cap of pain medication to ensure full rest.

Morning came again. With it came a glimpse of normal, of routine. Her husband awoke with the babe at 5:45 a.m. She put drops and healing ointment in his eye, then refreshed the patch and shield with the breathable tape she’d grown to love for some odd reason. It was a noisy, hurried morning. So he’d asked them to leave the bedroom. He couldn’t handle the volume nor the activity. So she closed the door, took the kids downstairs, and left her husband to sleep, rest and recover. She fed three kids, made cold lunches, and packed their bags tight. Off she went. Off he went. And off she went with babe to the gym in pursuit of two lifelines, exercise and music, that keep her on the straight and narrow when all else fails.

She made her way around the track, two times maybe three, then plopped on an elliptical. She needed this. Bad. She’d weighed herself this morning for the first time in a week or two. A new non-pregnancy high. When she stopped working seven and a half weeks ago, she was already at a non-pregnancy high because of all the stress and chaos of the transition. And now after an eye cancer diagnosis, trip of a lifetime with Compassion International, back to days of eye cancer appointments and a week-long hospitalization for her husband? A new high. She was officially 10 pounds higher than her (low) pre-pregnancy weight with baby #3 four years ago. Ugh. She’d worked hard with a personal trainer to get to that pre-pregnancy weight four years ago. But still. 10 pounds up from that. Ugh. Grace. Grace was in store. Today’s workout wasn’t for her weight. It was for her mental health. For the overall wellness of her being, not the perfection of her physique.

The workout was slow to start. She felt the weight of her body, her soul, her mind as she moved her feet back and forth on the elliptical. She started slow, eager to go faster as her body led. She pressed forward, next, on her iPod, letting the Spirit move to music that soothed her soul and felt in line with who she is now, right now. Let it Go. A little Adele. A Christmas song for good measure. Whatever. 

In-between clicks, she noticed the woman to her right, the one she’s been watching for a year or two now, the one she waves to and says hi to, the one she’d be friends with in one fell swoop given any proper invitation. Yes, there was the woman who inspired her most in this place, the one who throws punches and kicks fierce, the one whose pain shows through, the one whose dreads fall long and fly where they may as she dances to her own beat on the treadmill and off to the side. She danced, kicked, punched, and exhaled CH, CH, CH, CH, CH, as long as her soul needed to heal, to breathe, to bring forth life and energy.

Time had passed, more than she knew. So she got off the familiarity of the elliptical and back on the track. She passed the woman throwing punches and prayed they’d become friends someday, somehow. And as she slowed to cool, she approached a man she’s been sharing workout space with for a year or two, a man who walks slowly and initiates awkwardly, but who’s always ready to chat about this and that, even for a bit. He was slower than normal, so much so that she could barely keep pace. She knew right away something was wrong. She was right. He’s been diagnosed with Progressive Supranuclear Palsy. They think it might have something to do with his exposure to agent orange in Vietnam War. So he’s headed back to the VA hospital later this week for more testing. He’s not sure what they’re going to do, but his daily exercise around the track has apparently improved his health and extended his life in invaluable ways. They’ve taken away his driver’s license, and for that, he’s notably disturbed and saddened. She walked slowly. And let him talk through the pain. He wants to sell everything and move south so he can walk and bike in air that’s comfortable. She heard him out. And wished him well more than once before they parted ways. Young ones passed, running as if life’s a sprint. She’s not sprinting anymore. This unpredictable snail’s pace is fine. Just fine.

She returned home with babe. The house was silent. Her husband was still sleeping.

Babe climbed up on the big bed and begged daddy for McDonald’s. He said no. “I just want to sleep today.” But before long, he was up, ready to go – for babe, she supposed.

His eyes hurt from the bright sun. He felt nauseous. He just wanted to go back home and back to bed. But he pressed on anyway. He ate the “just okay” grilled chicken sandwich she ordered him for a healthy dose of protein, and hugged his babe tight when she tucked into his side.

And when they returned home? He slept. He continued healing slowly, but surely. Babe slept. And she wrote those words that had been turning into sentences, those sentences that had been turning into paragraphs. She waited for the after school rush of loud, vibrant no normal.

 

 

 

 

8:55 a.m.

We arrived at the hospital 45 minutes ago. Seth’s parents went to the cafeteria to get some breakfast, and I washed Seth’s hair before he took a shower. When Seth got back in bed, he noted that he’s gotten “in a routine that has been healing and helpful” during his stay at the hospital. Leaving “the routine of Tuesday, Wednesday and Thursday” is making him a little anxious. I have to admit, I’m a tad anxious as well. Before we know it, we’ll be heading back home where our three kids will be waiting for our love and care. Seth will be out of commission for a while, so I’ll be responsible for helping him as needed while caring for the house and three kids full-time. But people have already been generous with their offers of help, so we will be just fine. Seth’s surgery for removal of the gold bottle cap plaque is scheduled for 10:30 a.m., but there haven’t been any signs of movement yet.

10:47 a.m.

Seth was wheeled away to surgery at 9:17 a.m. By 10:40 a.m., we received word that surgery had just been completed. He’ll be in recovery for a while, so we’ll wait patiently in his room until he returns.

11:45 a.m.

Four nurses brought Seth back into his hospital room 10 minutes ago. They helped him into bed and got him readjusted. Seth reported a 5 on the pain scale. (He hadn’t reported anything higher than 4 since Monday after the first surgery.) His eye was stinging and throbbing, so nurses gave him his usual cocktail of pain meds. Napping seemed the next best course of action. He was definitely still coming out of anesthesia.

11:55 a.m.

Seth had been completely quiet and still for 10 minutes. Out of the blue, he shared one sentence, “I’m going to want a Blizzard later when I wake up.” Seth’s mom assured him we could make that happen. Then back to silence.

1:17 p.m. 

I just got back from lunch with Seth’s mom. Seth is upright in bed, and lunch is on its way. We’re hoping he’ll be able to tolerate the food since it’s one of the requirements for discharge later this afternoon. Seth was administered his usual pain management “cocktail” at 11:45 a.m., but now he’s reporting worsened “stabbing” eye pain. The nurse gave him a new pain medication via IV, which thankfully kicked in within a few minutes.

2:59 p.m.

I decided to watch a live stream of IF:Gathering, an organization that exists to “gather, equip and unleash the next generation of women to live out their purpose.” Had we not been at the hospital all week, I would’ve been attending a special ladies event today and tomorrow to watch the live stream. Most of the women speaking at the event are in the heart of my blogging niche, so I was excited to catch even a few minutes of it live.

Angie Smith interviewed a woman who lost her husband and two boys (9 & 7) in a tornado. The woman spoke, “I’m here today. I have a choice to live in sorrow and let their lives be completely wasted, or I can talk about what God did. I chose Him in my darkest hour.” Then Jennie Allen, founder of IF:Gathering, spoke. “We’re in the wilderness bumping up against each other wondering what we’re supposed to do. We are at war and the prize is faith. I believe that women are going to move from journals of sight to lives of faith.” I love my sister writers. They’re so wise. Yes, let’s share what God’s done in our lives. Yes, let’s live by faith and not by sight. The themes seem to fit this journey through eye cancer and everything else that’s transpiring in my life these days.

4:20 p.m.

I went downstairs to the pharmacy to pick up three prescriptions Seth will need once he’s home. When I got back up to the room, Seth said he might be discharged soon. He inquired about getting an additional prescription for pain medication, so the nurse is inquiring with the doctor. I just washed Seth’s hair for the second time today; we’ll be heading to a hotel for the night and it’ll be hard to protect his eyes from water with the set up of the bathroom there. Exhaustion is setting in. Big time.

6:24 p.m.

Seth was officially discharged and walked out the doors of his hospital room at 5:03 p.m. We took a shuttle back to the hotel, then his mom and I went to Mayo Clinic to pick up the fourth prescription. While we were there, we verified with one of Dr. G’s colleagues that Seth can resume reading as he feels comfortable. We’d forgotten to ask at discharge.

9:56 p.m.

We enjoyed a casual dinner with Seth’s parents before saying thank you and good-bye. So here we are. In the hotel room. I’m writing and Seth’s sleeping. We stayed here together on Sunday night before Seth’s surgery, I’ve been alone in the room all week, and now tonight, we’re right back where we started. Radiation was delivered to Seth’s eye for five days straight via the gold bottle cap plaque while he was in the hospital. Now the only physical evidence he’s been through eye cancer treatment is a big eye patch and shield, and a bunch of stitches nobody will ever see except the doctors.

One month from now (early-mid March), we’ll return to Mayo Clinic. Dr. G will take a look at the stitches to make sure they’re dissolving as expected. He’ll examine Seth’s eyes, and perhaps we’ll get a glimpse of the impact radiation’s had on Seth’s sight in his right eye. He’ll check for double vision and if there’s any drooping of the eyelid, both common with this surgery. Three months after that (early-mid June), we’ll return for another appointment. At that appointment, Dr. G will examine Seth’s vision again, but will also begin looking at the tumor to see if it’s reducing in size. That is the earliest they would expect to see any shrinkage of the tumor. If, at that time, the tumor is reducing in size, they will see him in 6-8 months. If, at that time, the tumor is the same size or bigger, they will see him every 3 months until it’s smaller.

When we wake up in the morning, we’ll be heading home. Seth will be home and out of work all next week. If all goes as planned, he’ll be working from home the last two weeks of February. Once we’ve acclimated to home a day or two, I’ll touch base with another post.

Thank you all for your faithful prayers, love and support this week while we’ve been in the hospital. You’re the best, and we’re so grateful.

I’m exhausted, friends. Good night.

 

 

 

Seth’s fourth day in the hospital consisted of status quo with more fatigue than normal and a couple more mentions of “throbbing” pain than the past two days. But all in all, things are well here. We did receive at least one notable update from the doctor this afternoon, but I’ll wait to share that until tomorrow as we progress through Seth’s second surgery and removal of the gold radioactive plaque that’s been in his eye for five days.

Between now and tomorrow’s surgery, I thought I’d offer a few light-hearted random thoughts from the hospital. Because after the deep post from yesterday and a long week at the hospital, a lighter tone goes a long way.

Here goes nothing…

Random Thought #1

“When bad things happen, there’s always someone who asks “why me?” It’s easy for people to compare their lives to mine and feel really sad. But this is it. I accept it. It is what it is.” – Seth as he was eating breakfast in the hospital bed

Random Thought #2

FaceTime is awesome. We’ve used it every day this week to communicate with my mom and the kids. Surprisingly, it’s been a great way to expose the kids to Seth’s eye, the patch and shield before we come home. It’s helped maintain a bit of “normalcy” for our family during the hospitalization.

Random Thought #3

Hospital cafeteria food is actually quite good. Seth’s parents and I have eaten most of our meals here at the hospital. Today’s lunch was the best so far. Turkey. Yukon gold mashed potatoes. Gravy. Cooked carrots and snap peas. Yum.

Random Thought #4

When you’re in the hospital for a whole week, visitors are a great change of pace. Our flower girl came to visit again today, as did Seth’s dad’s cousin and wife who live locally. All three individuals were sweet and added joy to the end of our day. Fresh perspective is welcomed and necessary.

Random Thought #5 (yes, I know this is contrary to random thought #3)

Jimmy John’s is awesome. I told Seth I was going to order Jimmy John’s for dinner tonight for a change of pace. Let me tell you that the Jimmy John’s dude arrived at the hospital entrance on his BIKE. The temperatures out there today are SUB-zero! I was beyond impressed. And of course, the service was speedy and the food was delicious. HUGE fan of Jimmy John’s.

Random Thought #6

Facebook, Facebook messages, Twitter, emails, texts, blogs and blog comments are an awesome way to communicate with a caregiver (like me) who’s highly visual and prefers written communication. Thank you to everyone for your great support.

Random Thought #7

Facebook, Facebook messages, texts, blogs and blog comments are an awesome way to encourage a patient whose love language is words of affirmation. Seth has really enjoyed hearing us read the messages everyone has been leaving on Facebook and the blog. Thank you!

Random Thought #8

When you’re at the hospital long enough, you become somewhat accustomed to the scene. Wheelchairs, IVs, bandages, beeping machines, scrubs, head scarves, leg braces and the like become the norm. Sure, the sights catch you off guard once in a while, but all in all, you acclimate. I wonder what it would be like if ALL of our burdens and bruises were exposed so visibly to the world. Wouldn’t we be a lot more sensitive to fellow humans beings?

Random Thought #9

Being at the hospital for great lengths of time can occasionally make you delirious. After returning from the hospital tonight, we all got a little delirious on the elevator. We got in and all three of us forgot to press the number to go up. My father-in-law made sure to let the lady in the elevator know we weren’t intoxicated, we were just delirious, overly tired from a week at the hospital. And let me add, thank goodness for comedically inclined people like my father-in-law. Because some of us are so NOT comedically inclined.

Random Thought #10

If you want to do good for someone in the hospital, keep it sweet, but simple. Relatives took Seth’s parents out for dinner tonight. And they came back with some awesome coconut cake to-go for me. Oh my goodness. SCORE.