A new tumor showed up in my husband’s liver at his 8-week scans in May. But the rest of the liver tumors showed a mix of shrinkage, growth, and stabilization, so we signed a form stating we were choosing to continue the clinical trial despite disease progression, and proceeded to receive 8 more infusions of the drug.

At his 8-week scans in July, the new tumor grew, and a couple other concerning ones grew a tad, too. But just like last time, the rest of the tumors showed a mix of shrinkage, growth and stabilization, so we did a risk analysis with the doctor and decided it made most sense to stay on study for another 8 weeks.

After those scans, I shared a medical update with friends and family. One response caught my attention more than any other and has stuck with me since.

“I can’t imagine living 8 weeks at a time.”

Reality is, we started living scan to scan 4 1/2 years ago when my husband was first diagnosed with choroidal melanoma (eye cancer), but living scan to scan took on a whole new meaning eight months ago when we started a clinical trial for liver metastasis. Instead of scans every 9 months, 6 months, 4 months or 3 months as we’d done in the past, this trial required scans every 8 weeks. So when I saw that “I can’t imagine living 8 weeks at a time” comment pop up, it resonated deep within me. Living in 8-week intervals is a challenge. It changes the way you live.

We’ve been living 8 weeks at a time for more than 8 months now. But this current 8-week period felt different. Both my husband and I had prepared ourselves that there might have been enough tumor growth for us to be kicked out of the trial back in July. So when they told us we could stay on for another 8 weeks, it felt like a GIFT, a gift of more time.

My husband was glad he had another 8 weeks to stay on a treatment that’s become predictable as far as regimen and side effects. This is a crazy busy time for him at work. He had three big business trips over the course of this 8-week period, for a total of 11 full days of out-of-state travel. During these 8 weeks, he also took on more responsibility at work. And then there’s the 4-day Boundary Waters trip he’s had planned with buddies, also during this 8-week period. He decided he wanted to put more priority on local friendships, so he shared his intentions of getting a guys night out scheduled sooner rather than later. And he thinks we should be doing a better job of inviting more people over for dinner, so we agreed on a family we wanted to invite over for dinner. The only problem is we haven’t gotten around to inviting them yet. They’re the ones texting us, asking if we have room for freezer meals.

Living life 8 weeks at a time has taught us that despite our challenges, despite our most difficult hardships, life goes on. There’s work to be done, schedules to keep, priorities to consider, and plans to be made. So we flow, we live and we move through life. We keep things as normal as possible for normal is predictable, normal is comforting, normal is known.

The day we received scan results in July, I knew this 8-week period was a gift and I have treated it as such. Some might say I’ve gone overboard. Maybe so. But right now, I care little for what people think unless they’ve walked in my shoes. I’ve done what I needed to do. So in July, I decided that from here on out, I will do everything I can to keep myself healthy. I committed to working out three times a week, went to the dentist, to the OBGYN for a pap smear, had my annual mammogram, an intake appointment with a grief counselor, an intake appointment with a nutritionist, and met with a primary care physician. Have we covered all the bases? I believe so. In this 8-week period, I created an aggressive agenda and took a whole 5-day work week, 9 am to 4 pm, while my girls were at cancer camp to analyze my work life and seriously consider my call to pursue writing and photography in light of current circumstances. I pressed hard on household tasks, ensuring two furnace parts were replaced under warranty, ensuring a claim is still in process for replacing our washing machine also under warranty, beginning a discussion about cutting the cable cord, and keeping up on laundry, cleaning and finances so things were ready in the event of sudden change. And yes, I did all of that with the overarching goal of being a good wife to a husband balancing work and stage IV cancer, a good mom to three kids home for summer, and the best friend possible to local women who have been absolutely FABULOUS in every way possible. My anxiety has increased, and I’ve hit a few walls of fatigue and stress. But I’ve also felt strong and empowered and I will somehow make it through this.

Living life 8 weeks at a time has taught us that keeping ourselves healthy isn’t optional, it’s necessary. Taking responsibility for stuff that needs to get done isn’t optional, it’s necessary. Sometimes it takes hardships to push us to do the things we’ve been debating, doubting and putting off for far too long. Yes, there’s no better time than NOW to do pretty much everything.

And then there are the kids. I brought the girls back-to-school shopping and our son by himself. Managed to get all three out for school supply shopping, our annual pizza at the park outing, and an afternoon at a trampoline park. During this 8-week period, one of our son’s best friends moved to California. I prayed that God would surround our son with new friends and that existing friendships would be strengthened, and that prayer has definitely been answered. As evidenced by empty energy drink cans, McDonald’s bags on the kitchen island and lots of voices coming from the game room, this has been an incredibly busy social summer for our son. Our oldest daughter has also been socializing like a mad woman. And then there’s cheer. She had to raise $650 through fundraising in addition to the $550 we already paid for basic fees and $675 for the uniform package. So in this 8-week period, she learned what it’s like to go door-to-door trying to raise $650 by selling $9 car wash tickets. Real life at its finest. The youngest has been obsessed with playing. Any kind of playing. Indoor. Outdoor. Slip and slide. Playground. Movies. Playdates. Lemonade Stands. Tractor rides through elk fields. Whatever. It’s all fair game. I can still carry her if she jumps into my arms, which reminds me she’s still so little. And I see my big kids ready to head off to a beautiful new high school in a couple weeks, and time is literally slipping away before my eyes. I want to stop time for them. Stop time for me. Stop time for all of us as a family because this couldn’t be going any faster, and I don’t want to get through this medical crisis and realize they’re grown, they’re gone. What happened? Oh my.

Living life 8 weeks at a time has taught us that there is a season for everything. Seasons come and seasons go. Seasons don’t stop when you’re stressed or distressed. Seasons won’t stop so you can enjoy them a little longer. Savor those seasons while you can. Because once they’re gone, they’re gone. Love whatever season you find yourself in. Because before you know it, it’ll have turned.

And I was holding up oh so (sort of) well for 4 weeks and 6 days of this 8-week period until our 14-year old daughter jumped out of the car and sprinted into the house to change out of her cheer uniform before I could even process what was going on. She was leaving with her friend and needed to pack quickly. I didn’t even get to say good bye. Realizing what was happening, I looked out the side window of our car and started to cry. “Why are you crying?” my husband asked. “You should have told us your plans.” “I didn’t plan this,” I responded. “I didn’t plan any of this.” All I’d planned, all I’d hoped for was ONE meal out as a family that weekend. One meal. But five became four when our 16-year old said he had to work all day. And four became three when our daughter rushed off to a last-minute outing with a friend. And suddenly, our family time was gone and it was just the three of us with 45 minutes until I needed to leave for a photo shoot. Not enough time for a nice meal out. Arby’s was where it was at. I felt like Steve Martin in “Father of the Bride” when the whirlwind wedding left him trapped in a crowd, unable to see his daughter for even a passing moment before she whisked away with her new husband. What happened to my daughter? What happened to my family time? What happened to my life?

Yes, that’s what finally broke me. That’s what made me cry. That’s what living 8 weeks at a time has taught me. Live diligently. Live awake. Life is a fleeting mist and we’d better get at it NOW.

I gathered myself. I ate my turkey club at Arby’s. I was back in time for the photo shoot and it was awesome.

But the truth is, it had been a difficult week. My husband woke with pain on Tuesday that seemed to distress him and he’s not a distressed kind of guy. The pain lasted all day, made him uncomfortable, worried and more fatigued than normal. The pain got better by day two, three, four and five, but he could still feel something different in there, and there was still an area that was sensitive to touch. I sent an email to the head nurse and they told us they wanted us to come early for scans. We didn’t even get 8 weeks this time. We got 5 instead. Just as I’d thought. This 8-week period was a gift. Every week. Every day. Every minute and second. A gift.

While this week’s scans didn’t show any NEW tumors and technically he’s “stable” according to study parameters (less than 20% growth since the last scans 5 weeks ago), the doctor said he’s “on the plus side of stable.” There’s also a key lab that’s been on the rise for seven weeks, which more often than not indicates that the melanoma is getting ready to grow. So the doctor recommended we begin taking a serious look at what our next treatment options will be. Sometime in the next 2-3 weeks, we’ll be meeting with an interventional radiologist to determine what type of liver-directed treatment will be best, and after that treatment is done, we’ll need a new systemic treatment, which will likely be another clinical trial.

So for now, we will live NOT EIGHT WEEKS at a time, but ONE DAY at a time. That’s the best choice any of us can make anyway.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself.” Matthew 6:34

 

This week marks one year since my husband’s diagnosis of Stage IV Metastatic Uveal Melanoma, an incredibly rare form of melanoma that affects 6 in 1 million people. What started in January 2015 as one single tumor in his eye metastasized to 8-10 tumors in his liver in June of 2018 and is now 16 tumors in June of 2019. We started treatment at Mayo Clinic in Minnesota, moved to Seattle Cancer Care Alliance in Washington, and are currently receiving treatment at Providence in Oregon. The first-line of treatment, an immunotherapy combo of Yervoy/Opdivo was deemed to be ineffective after three infusions. After a four-month break from treatment due to a whole-body rash, an incredibly rare case of Drug-Induced Lupus, and elevated liver enzymes that needed to be managed with steroids, we began a new treatment, this time a phase II clinical trial called IMCgp100. Infusions have been weekly for more than six months now. Most recent scans showed the presence of a new tumor in the liver, so we may be moving towards another new treatment this summer or fall.

I watch a piece of cotton drift through the air. Another piece lands on my forearm. Birds take flight overhead. The dogwood we planted in memory of my husband’s grandmother is slowly losing its creamy white blooms, and the slip and slide is drip drying on a wicker chair. Tiny voices giggle and squeal on the other side of the fence. Our kids have their last full day of school today, then after a few hours tomorrow, they’ll be home for summer. Life goes on. Life is normal. And not so normal at all.

And I think of that special someone, that someone who rang the doorbell of our Seattle suburb home less than a month after my husband’s mets diagnosis last summer. She showed up with a feast of Stan’s Bar-B-Q, chocolate cupcakes, and a bouquet of flowers purchased by our friends from Minnesota and and hand-delivered at their request. I’ll forever be in awe over that grand gesture of kindness and creativity from those Minnesota friends.

The grand gestures of kindness and creativity didn’t stop there. That special someone didn’t have ANY connection to us beyond our one mutual friend in Minnesota, but she kept showing up, NO longer at the direction of our friend back in Minnesota, but out of her own goodwill.

She delivered pizza, Jersey Mike’s subs, and Thai twice. She had Mexican ready for pick up, showed up with numerous bags of groceries for a Thanksgiving feast with my in-laws, and delivered an IHOP breakfast early one Sunday before we left for scans. She stopped by with surprises for our kids – tennis shoes for our son and an outfit for each of our daughters, hand-picked and specially chosen. I found out she was the one who left me an extravagant gift at the door. And I’ve certainly missed something considering all her crazy acts of selfless generosity this year.

But then there was this LAST delivery, our FIRST meal delivery after scans showed a new tumor, the 16th tumor. The doorbell rang and there she was with a big bag of Chick-Fil-A.

“Oh my goodness. Thank you. This is going to be AMAZING,” I said. “How are you doing?” she asked. I went on to explain that scans showed a new tumor. She already knew from the post I’d shared on Facebook that morning. “Do you need to talk?” she inquired. “Yeah, actually.”

In she came with her big white bag full of chicken sandwiches, fruit, salad and waffle fries. She sat on the loveseat. I sat on the long couch on the opposite side of the room.

There we sat.

Facing each other.

We’d just arrived home from treatment and a three-hour drive, my husband was still out in the car on a conference call for work, and our kids were all gone, so I had a little time.

Time. That’s all any of us need…just a little time.

Conversation began. I went straight at it. She’d asked me directly if I needed to talk and I said yes. So in I went, right in once we sat on those couches. No use beating around the bush. I told her where things stood. I looked straight at her and expressed my concerns. I told her what I was needing right now.

Then after I expressed what I needed to express, she responded in an ever-so loving and understanding way, saying the thing I needed to hear for one whole year.

“This is not normal. This is not normal at all.”

“No it’s not,” I replied. Silence fell a bit before conversation moved on.

Can anybody give me an amen? This is NOT normal. This life we’ve led for the past year is NOT normal. If you’d like to debate the definition of “normal” for me, go for it. If you’d like to argue that “normal” is relative and nobody is normal, that’s fine. Go at it. But there IS some semblance of normal, some top-of-the-bell-curve range of normal life and we have NOT been living that life this past year.

A 6 in 1 million diagnosis is NOT normal. Moving into a new home on June 11th, driving away from that new home and flying 1,700 miles away on June 13th, and leaving your kids with your with your in-laws for 11 days while you go get a serious diagnosis is NOT normal. Having to sit on the phone for hours and fight with insurance companies over coverage (or lack of coverage) of MRIs and PET scans when you are dealing with your husband’s pending diagnosis is NOT normal. Having to stay in hotels, guest houses and other peoples’ houses while you’re getting scans and treatments is NOT normal. Calling your braless friend to come over when it’s still dark and drive your kid to the bus stop in her pajamas because you have to get your spouse to the ER as soon as possible and he shouldn’t be left alone for even a few minutes is NOT normal. Having a rash show up ALL over your entire body is NOT normal. Having your skin turn from normal to vitiligo ALL over is not normal. Having your beard turn 100% gray when you’re 45 years old is NOT normal. Having to travel three hours one way every Sunday night to get to a clinical trial, get an infusion and drive back three hours every Monday for months upon months is NOT normal. Having people watch your seven year old and fourteen year old every single Sunday and Monday is NOT normal. Having to leave your sixteen year old to fend for himself every Sunday and Monday is NOT normal. Having your seven year old cry for two months on Sundays because having her mom and dad leave every Sunday is getting really old and she’s had enough of it is NOT normal. Having scans every eight weeks is NOT normal. Going to get your blood tested every week is NOT normal. Worrying whether a teeny tiny box titled “joint ownership with survivorship” is checked on the title on all of your vehicles is NOT normal. Being told your spouse has another tumor, waiting too long for a response from the head doctor, and being told it is highly advised to wait another 5 weeks until the next set of scans to see how the melanoma is growing, and that he might need another biopsy or he might need a PET scan and that there might be six or more next treatment options is NOT normal. Finishing a workout and having to lean over a garbage can as you walk into the locker room because a wave of grief washed over you as you took a sip of water and you know that if you can’t keep that grief contained you just might spit it all out into that garbage can. Yeah. Not normal.

This is NOT normal.

Thank you, special someone who has diligently served us with meals and unexpected gifts this year, for straight up acknowledging the ONE simple thing I needed to hear.

This is NOT normal.

This is not normal at all.

I’ve tried. I’ve REALLY tried to live a normal life. Although metastatic uveal melanoma rarely strays from my mind, I’ve worked hard for 12 long months to keep my thought life tamed and at bay. I have worked hard to live a normal life for myself, my husband and our three children. I have worked hard to be as positive as I can, to enjoy every moment and not worry about this, that and everything under the sun.

I’ve seen my husband looking normal, acting normal and working hard just like everything is normal. I’ve watched him put in long hours at work and go on business trips. During this past year, he made an appearance on the red carpet of the Billboard Music Awards and someone commented so poignantly “This is your best work life ever.” Yes. True. These past several months HAVE been his best work life ever. I want a good work life for my husband. I want an awesome work life for him. I honor and respect the supernatural power of positivity he has had in response to his diagnosis. I want a joyful and normal life for our entire family. But I also need to acknowledge that this is NOT normal.

So thank you, special someone. Thank you for saying it straight up.

This is NOT normal.

I just needed someone to say that.

I just needed someone to see that.

I just needed to know I wasn’t alone in thinking this is NOT normal.

When you sit with someone’s story and acknowledge that this is NOT normal, you validate their pain, you validate their life.

And here’s what you really need to know. Yes, this is a secret I believe everyone does NOT understand intuitively. When you listen to someone, when you really SIT and listen to their story and acknowledge that this is NOT normal, you FREE them to truly live.

So yes. Thank you, special someone. Thank you for listening and acknowledging. Thank you for saying “This is not normal. This is not normal at all.” Thank you for sitting in that loveseat, looking at me, and saying it like you meant it.

Your words validated me. Your words reminded me that I’m not alone, that I’m not going mad. Your words reminded me that there are people who understand and are willing to sit with me and the questions. Best yet, your words were empowering. Your words allowed me to embrace my gut feeling that this is indeed NOT normal. Your words empowered me to move on, to soak in the sun, the clouds, the rain and the gentle breeze. Your words freed me to live, knowing it’s okay to fully acknowledge pain and fully acknowledge life in its bountiful abundance. Your words freed me to leave my seven year old with my fourteen and sixteen year old last night so I could go to Bible Study and discuss how we can best be light in the darkness. Your words freed me to be vulnerable with the group, to share prayer requests for myself and for our family. Your words freed me to make a quick stop at home and grab the car keys trusting that these kids are going to be okay, because light will always overcome darkness. Your words – THIS IS NOT NORMAL – freed me to put those keys in the ignition and drive to my monthly girls night where I was greeted with a hug, six welcoming smiles and genuine conversation with the most amazing ladies yet. Your words – THIS IS NOT NORMAL – freed me to breathe easy while I sipped a glass of wine, ate Ghiradelli chocolates, talked about motherhood, work life and lots of 40-something normal things for two hours. Your words – THIS IS NOT NORMAL – allow me to see once again that life is full of incredible pain and incredible beauty. And as daylight turned to darkness, she turned on the lights and our normal, ordinary, everyday conversation lit up the darkness.

 

 

What comes to mind when you hear the word bucket list? How about skydiving, taking a romantic trip to Paris, horseback riding at sunset, visiting the Grand Canyon, taking a hot air balloon ride, or bungee jumping? What about running a marathon, hiking to the top of Mount Everest, retiring at age 55, visiting the Great Pyramids, taking your family on an epic mission trip, or swimming with dolphins in the Caribbean? The list could go on and on, am I right?

Some people have a bucket list before they’ve barely left the nest. Some begin drafting a list in their 20s when life feels full of possibility. Others crack open the idea book when they’re pushing retirement and they’re finally free to do the things they’ve been waiting to do. Others never think a second about a bucket list until the reality of mortality hits home. And then there are some who never dream, never allow themselves to think beyond the here and now, never once write a single item on their so-called bucket list.

Whether you have a bucket list or not, we all know what a bucket list is. A list of activities and experiences you’d like to have before you die. Bucket list items are typically fresh, novel, exotic, unusual, unique experiences you’ve never had before. The assumption is that once you’ve completed a bucket list item, you can check it off and move on to the next one.

Today, I’m going to break the bucket list myth. Perhaps it’ll inspire you to think differently about bucket lists. Perhaps it’ll inspire you to actually MAKE a bucket list if you don’t already have one. Perhaps it’ll free you to add something (or many things) to your list you never thought of before. I don’t know exactly what this post will do for you, but my ultimate aim in sharing is to help you think differently about living and dying well.

Since my husband was diagnosed with Stage 4 metastatic uveal melanoma 11 months ago, I’ve experienced the whole gamut of thoughts and feelings as his wife of nearly 21 years. Fairly early on, I felt like we should be making a special point to do special things. Maybe not bucket list items, per se, but special activities like local outings and adventures with our kids. Every time it was a weekend, I’d ask my husband if there was anything special he’d like to do. Want to go to the glass gardens? Want to go to Leavenworth, a Bavarian mountain town, for an overnight with the kids? Want to go skiing? Want to take a ferry to an island? I don’t know. I was up for doing something special as a family, something to make memories. Maybe I was trying to create a bucket list FOR my husband? Dare I say YES?

The odd thing is that my husband would just keep responding to my random bucket list inquiries with “No, I just want to stay home, lie low and do the things we’d normally do as a family.”

I’ll be honest. This kind of bothered me at first. It still kind of bothers me. But when you’re 11 months into a stage 4 diagnosis, you start to understand things you never thought you’d understand. For some reason, I’ve BEGUN to understand my husband’s thought process. I’m not fully there, but I’m beginning to understand, I’m beginning to see the beauty in it. And THAT’S exactly why I’m sharing today.

You see, he didn’t WANT to check off a bunch of bucket list items in light of his diagnosis. In fact, I’m not sure if he really even had a bucket list! Several months after the diagnosis and several months of asking him “Do you want to….,” “How about we….” “What do you think about….” and him continuing to respond with “No, I just want to stay home, lie low and do the things we’d normally do as a family,” I finally decided to get more pointed in my questioning. After all, it seemed weird that he didn’t want to do ANYTHING and I wasn’t convinced he wanted to just sit at home ALL the time! So I asked again, a little differently this time, “Is there anything specific you have on your bucket list?” “Is there anything you REALLY want to do?”

And that’s when the answer came, a simple, two-point bucket list. “Well, I guess I’d like to go whale watching and take another Disney trip.”

So when my husband’s brother was visiting in early April, we went whale watching and completed bucket list item #1! It was fabulous and oh so good to see him smile. And I got to see the promise of a rainbow and clear skies just as we were about to board the boat, despite a forecast of nearly 100% rain.

After whale watching, all that remained on the two-point bucket list was take another Disney trip! Yay! Disney! Yahoo!!! The most magical place on earth. So exciting! So fun. Awesome trip for the kids. YES. All yes.

(But here’s where we’re breaking the bucket list myth.)

You see, we’ve had the blessing of going on MANY Disney trips. In fact, if you look back on our near 21-year marriage, the one vacation we’ve returned to time and time again is Disney. Our first trip to Walt Disney World was when we were on our honeymoon. Then a one-day visit to Magic Kingdom in 2002 when I was pregnant with our first child. Our first family-of-four trip was to Walt Disney World in 2010, and we loved it SO much we went back and did it all over again in 2011. In 2013, we joined my husband in Los Angeles for a big work event and added a couple days at the end to take the kids to Disneyland. 2015 marked our first trip to Walt Disney World as a family of five. In 2016, right before my dad had a lung transplant, my husband and I snuck away for a short Disney cruise preceded by a single day at Magic Kingdom. And in the summer of 2017, when my husband was laid off, he won a weight loss competition and a free trip to Florida. We had one magical day at Magic Kingdom that summer before moving to Seattle.

So here we are. About to embark on yet another Disney vacation. This time, it’s an official bucket-list vacation. It’s not about the novelty at all. This is my husband’s grandest version of “I just want to stay at home, lie low and do something we’d normally do as a family.” Okay, we’re not staying home, we’re not going to lay low, but we ARE very much doing the thing we’ve done as a family since this family was established in June of ’98.

What is the lesson? What is the point? You might need to revamp your bucket list. You might need to rethink that bucket list of yours. If you aren’t inspired by the standard bucket list, if you’re not the bucket list type, then maybe you’ve been thinking about it all wrong. What if the thing you’d really want to do most if you were dying is the thing you love and have been doing forever?! What if the thing you’d really want to do if you were living your very best life was that one amazing thing you’ve already done? What if that bucket list item is something you’ve done 25 times, but you’d really like to do it ONE. MORE. TIME because it was SO incredibly good?

So what’s it going to be for you? What’s going to be added onto your bucket list now that we’ve dismembered the whole concept of bucket list? Going to visit your granddaughter one more time? Visiting that special beach one more time? Going to Mexico one more time? Reading your favorite book one more time? Running a marathon one more time? Going to lunch with that awesome friend one more time? Enjoying a chocolate bar one more time (or 550 more times) because it’s so incredibly satisfying? I don’t know what it is for you. But this I know for sure. We must live well AND die well. Live AND die well, my friend. Every day like it’s your last, or at least as much as you can muster. Whether you ride wild horses, coo with your grandbaby, or take another moment to put your feet up on the couch and count your blessings one more time, your story is going to be awesome.

Mama’s standing behind her boss baby, steadying and straightening her on the balance beam. Another mama’s wearing baby one while trying to take a photo of curly-haired baby two who’s not having a second of sitting still. Girls smile in delight, jumping and falling in synchrony on the trampoline. Two push a third in a contraption that looks like a hamster wheel. Boys jump on ropes, flying to and fro. Tiny one tries a somersault, but can’t seem to make it over an eight-inch triangle of foam. And then there’s my baby on the bar. She hangs, then pushes herself high. Does a flip, then another before she dismounts. I know what she’s trying to do. She wants to be like the big girl gymnasts she’s seen on YouTube and Netflix, the girls who fly over bars without a hitch or a fall, the girls who are real, true gymnasts.

We’re all trying to GET this right. We’re all trying to DO this right. We all want to BE our best, SHOW our best, LIVE our very best life.

And that gets me thinking, that gets me remembering the cashier in the grocery store years ago. She talked of her kids, how she “enjoyed every moment.” She gushed as spoke of her love, her adoration for her littles, through ALL the years. And all I remember thinking in response to that gushing, loving, enjoying-every-moment mom was that I was doing my best. All I could DO was DO my best. I was doing my best.

And that gets me thinking, that gets me remembering all the ways I’ve TRIED to live and enjoy EVERY moment the past eight months since my husband’s diagnosis of stage four metastatic uveal melanoma. But the truth is, I can’t write a sappy letter that’ll go viral and tell you all the ways you need to love and live and gush on your life every single moment of every single day. Because in the past eight months, I’ve learned that’s not humanly possible. A lovely, lively, gushy post about LIVING in the moment and LOVING every moment of your life wouldn’t be authentic coming from me. Perhaps I’m overly in touch with reality, but I refuse to perpetuate the lie. Living and loving EVERY SINGLE MOMENT of life to the FULLEST is not possible, people. What is possible is to TRY our best, to BE available, to LISTEN, to ENJOY moments and be present when we’re mentally, emotionally and spiritually able, and to DO our best, but realize we’re human, too.

I am doing my best. I am TRYING to enjoy every moment as much as humanly possible. I’m trying to look at my husband a little longer. I’m trying to listen a little harder. I am trying to hold his hand when I might not’ve otherwise. I am trying to stay positive, and I’m trying to be intentional about having meaningful AND fun conversations on our way to and from treatment. I’m trying to make our household a place he wants to come home to, and I’ve done a pretty darn good job of making our bedroom a haven for when he’s in bed longer than any of us would like. I’ve tried to savor the tiniest of moments – the sound of his voice, the way he hugs our littlest when she’s loving him so hard, the way he tells our 13 year old he’s proud of her, how he loves the way she she loves to get her nails done, the way he checks in on our son when he’s playing video games and is too busy to provide a meaningful response. I take note of how it feels to be a family of five, to have this opportunity to be whole, to live as ONE family unit for this moment in time.

I am doing my best. I am trying my best to be the best mom I can be. I am trying to be sensitive. I am trying to give the kids space. I am trying to meet their physical needs, their emotional needs, their mental, social and spiritual needs. I’m trying to pray before as many meals as possible, but I don’t want them all to be canned prayers, so I’m trying to make sure we throw in hand and heart-spun prayers, too. I am trying to love our kids in new and fresh ways because I don’t know what the future holds, and I want the very best life for each one of them. I’m encouraging daddy-daughter and father-son dates because I want our kids to have special moments with dad. But I want them to live normal lives and have normal childhood memories, too, so I’m transporting them to cheer, gymnastics and movies with friends. I’m arranging play dates and signing up for open gymnastics. I’m allowing sleepovers with friends more than I should, and I’m letting our teenager walk or ride bike to the grocery store to get more popcorn chicken than is necessary for any human being. I’m not enjoying every single moment, but I am trying my best. I am DOING my very best. I am living life to the very best of my ability.

I don’t know if I’ve made all the right decisions or taken all the right turns these past eight months. But I will always be able to say I did my best.

That is all ANY of us can say for certain.

I did my best.

You don’t have to love every minute of your life. You don’t have to savor and gush over every single moment. In fact, I promise you it’s impossible. We are humans. Fallen, imperfect human beings. We cannot possibly enjoy, live and love every single moment of every single day.

You only have to do your best, give your best, live your best, my love. You only have to sit in grace, dwell in whatever moment you’re given – good or bad, good AND bad – and give thanks. God doesn’t promise us a trouble-free life. He promises grace for today. That is enough, my friend. It has to be.

 

 

Never once did I intend for this to be a website where I share updates. I’m not the kind of person who started a blog so family and friends could get updates on our personal life and see cute pictures of our kids. In fact, all 6 1/2 years of sharing online, I have worked incredibly hard to keep this a place of inspiration, a place where stories are infused with insights for YOU, my reader. After all, this place is for YOU. I want to help you see the significance of YOUR story. But as I work slowly, but surely towards my ultimate writing and photography goals, I’ve realized that I can’t expect YOU to see the significance of YOUR story unless I see the significance of MY story (which means I need to share my story, too). Plus, life has gotten out of hand with all the medical stuff these past couple months. I started this series about our journey through choroidal melanoma four years ago, and I am COMMITTED to seeing it through. But the truth is, there is so much happening these days that I can’t possibly keep up my routine of writing a medical update infused with inspiration every time we have news. I’ve been debating what to do about this, and although this goes against every fiber of my being, I am going to LET it GO and move along. Today, for the first time ever, I am sharing strict medical updates on my website, IN this post. Because I’ve promised to share updates on my website and I know people are checking in on our family. Even more important, people who are experiencing choroidal melanoma, ocular melanoma, uveal melanoma and all the metastatic versions have found this series through Google searches, and I am committed to keeping our story complete for others going through a similar journey. So with that, here are brief medical updates from the past TWO months!

MEDICAL UPDATE 11.27.2018

Good news and LOTS of updates. We just got home from TWO full days of screening. Seth had three rounds of blood work, an ECG, a meeting with the awesome nurse who heads up the IMCgp100 clinical trial, a lengthy tour of the hospital and facilities, an ultrasound-guided liver biopsy, urine analysis, and a CT scan with oral contrast. The head doctor, head nurse and medical monitor for the research study met today to discuss Seth’s case, review all the data and make a final determination. It was an INCREDIBLY long and grueling day, but we made it through and got the good news around 4:00 that Seth has been officially accepted into the IMCgp100 clinical trial and can begin treatment on Monday, December 3rd! Seth is now off ALL Prednisone. The research team told us they’d need Seth off of Prednisone for two FULL weeks before he could start treatment, but it was determined that the lead doctor had leeway within study guidelines to give the go ahead to start sooner since Seth is off Prednisone and it wasn’t used to treat a brain condition. The IMCgp100 treatment will be on a WEEKLY BASIS, indefinitely, until the treatment isn’t working anymore or side effects are too severe to continue. First three treatments will require inpatient hospitalization. Fourth treatment MIGHT require inpatient hospitalization. After that, it will be on an outpatient basis. We are grateful for my dad who came to stay with us early-mid November, and Seth’s parents who came to stay with us mid-late November. My mom is flying out and will be here for 3 1/2 weeks to help during these first treatments. A meal train is going to be up and running for anyone who wants to help out with meals, random household tasks, child care/transportation, and miscellaneous needs. I will be spending the next three days doing a whole host of random tasks in preparation for treatment starting, and Seth will spend the next three days getting ready for a month-long leave of absence from work. Thank you all for your concern, love, care, support and prayers. We are blessed and surprised by your generosity and kindness.

MEDICAL UPDATE 12.3.2018

After four months with no treatment, the first infusion of the clinical trial drug, IMCgp100, is now complete! Seth was admitted to the hospital at 7:30 this morning in preparation for the infusion. He will be here until at least 10:00 tomorrow morning. Side effects typically set in 4-6 hours after the infusion, so now we are basically waiting around for side effects to set in. This morning, there has been a fair amount of discussion about the pros (and cons) of getting a port placed for ease of infusions and blood draws in the future, but also in case of emergencies such as significant drops in blood pressure. No decision yet. It’s up to Seth. My mom flew in yesterday and will be staying with the kids for these first 4 weekly infusions. Our first meal train dinner was delivered last night before we left, and it was delicious and perfectly timed. Prayers that Seth’s side effects won’t be too severe, that we will figure out a long-term plan for child care once my mom leaves, that Seth’s body responds favorably to the IMCgp100 clinical trial drug, that he is able to stay on it as long as possible, and that the 15 tumors in his liver stabilize or shrink (40% chance of some level of shrinkage; another 10-15% of people see stabilization). Thank you for your prayers and encouragement for Seth and our family as we continue to fight metastatic uveal melanoma. God bless you all.

MEDICAL UPDATE 12.10.2018

Port was placed this morning, and IMCgp100 infusion #2 wrapped up around 12:35 pm. Similar to last week, Seth will be in the hospital until tomorrow mid-late morning. Typically, side effects start kicking in 4-6 hours after the infusion is done, but last week, Seth’s side effects didn’t start until 10 hours later. Severe nausea treated with IV anti-nausea meds caused severe whole-body restlessness which took a couple hours to clear before he was able to sleep. Low blood pressure (not too bad), fever (not too bad), body aches & headache, pink sunburned-looking skin, dry and itchy skin all week and slightly sore forearms all week. We’ll see what this week’s infusion brings. Just hoping and praying that this treatment is effective in shrinking or stabilizing the 15 liver tumors, and that Seth is able to stay in the trial as long as possible. Thank you for your kindness, your love and your support.

MEDICAL UPDATE 12.17.2018

It was a long and difficult week between treatments, but yesterday Seth was back to his normal self. IMCgp100 clinical trial treatment #3 is DONE! We are in the hospital waiting for side effects to kick in. First week, side effects kicked in 10 hours post infusion. Last week at the second infusion, side effects kicked in 5 hours post infusion. We are currently sitting 1 1/2 hours post infusion, and everything is still fine and dandy. This is Seth’s last scheduled inpatient hospitalization for this clinical trial. If everything goes okay today and tomorrow, infusions will continue indefinitely, every week on Mondays on an outpatient basis, until it stops working or side effects are too severe to continue. If you have any questions, please let us know. We appreciate all of the amazing support and kindness everyone has extended during this 6-month journey through metastatic uveal melanoma. Requesting prayers for a better week for Seth this week. Thanks, everyone. 

MEDICAL UPDATE 12.24.2018

It’s 11:00 am on Christmas Eve and we just finished Seth’s 4th IMCgp100 treatment. Metastatic Uveal Melanoma does not take a break for Christmas! On our way home, anticipating side effects will kick in by about 3:00 pm. We are praying for 1) Side effects to happen even though it’s Christmas Eve, because side effects mean the drug is working the way it should. 2) Side effects won’t be TOO debilitating. 3) That Seth will be able to enjoy SOME of Christmas Eve, and that he will be able to enjoy ALL of Christmas Day with my mom and our three kids. 4) That Seth will have a good week between Christmas and New Year’s. 5) That he will be prepared to return to work 4 days/week starting January 2nd, and that transition back to work will go smoothly as we continue the travel and weekly clinical trial treatments. May the Lord bless you and keep you close this Christmas. Thank you all for your love, prayers and kindness. XOXO

MEDICAL UPDATE 12.31.2018

Clinical trial treatment IMCgp100 #5 is now complete! The two big kids came with us this week since they’re still on break and we wanted an opportunity to demystify the experience for them at least a little. Last night, Seth and Cooper went to a basketball game right after we arrived, and Elsa and I ate at an Italian restaurant. The worst of last week’s side effects set in 8 1/2 hours post infusion, and lasted for 5 1/2 hours. Today, we’re hoping for a lessening of side effects since it’s New Year’s Eve and we’d like to enjoy some time with the kids. We’d also like side effects to start lessening more quickly now because Seth returns to work this Wednesday, and is hoping to pull off a 4-day work week if possible. Thanks, ya’ll, for your love, prayers and support. Have a Happy New Year!

MEDICAL UPDATE 1.7.2019

Seth’s weekly clinical trial treatment continues. IMCgp100 #6 is now complete! Last week, side effects were the best he’s ever had, with the exception of nausea, headache and terrible itching that kept him awake during the night. Seth was on full-time short-term disability all of December, returned to work on Wednesday, and will go on intermittent short-term disability starting this week with a 4-day work week. First three days back at work went surprisingly well. Best and most normal three days we’ve had since October. Saturday and Sunday, Seth was back to his “new normal” with more fatigue and needing to keep his activity level and rest in check. First set of scans since starting this new treatment are scheduled for January 27th. Please pray that this treatment is effective, that scans will show stabilization or shrinkage of the 15 liver tumors. Pray for continued energy for Seth’s 4-day work week. Pray for endurance, health, clarity and peace for me as caregiver. Pray for endurance for us as a couple and family as we realize the weight of indefinite weekly travel for treatment. Thank you very much for everyone who has helped out with meals, love and prayers from a distance, child care, and for those who have helped out with generous financial contributions so we can make it through this time of uncertainty. God bless.

MEDICAL UPDATE 1.14.2019

Seth just finished IMCgp100 clinical trial treatment #7. Last week’s side effects were similar to the week prior, and were much more manageable. Seth laid low in bed all Monday night after we got home. This was his first 4-day work week on intermittent short-term disability. It was a long week, but everything went fine. Seth is due for another follow-up appointment for his primary eye tumor, so I am working on getting a referral and clinic notes sent so we can transfer care and get scheduled with a new provider in Portland. Biggest prayer request moving into the next two weeks is that scans on 1/27 show stabilization or shrinkage of the 15 liver tumors. Thank you very much. God bless.

MEDICAL UPDATE 1.28.2019

Yesterday, Seth had the first set of scans since he started the clinical trial, IMCgp100, for metastatic uveal melanoma. GOOD NEWS! There are still 15 tumors in the liver, but NO NEW tumors have developed since Seth’s last scans in early November. They only shared details about two of the biggest lesions. The central lesion is “more necrotic,” meaning it looks like some of the tissue is “dying away.” The other lesion is “stable” in size. So we will continue the weekly infusions until the next set of scans in 8 weeks, and will go from there. Good news for now! Seth can stay on this trial and we will keep on keeping on! (In other news, we went out for a special fondue dinner last night after scans. We very purposefully stayed away from all seafood because of Seth’s fish/shellfish allergies, but this morning, Seth woke up with swollen eyes, swollen lips, and must have had a swollen tongue because speech was impacted. We reported to three providers here at the cancer institute. They checked with the head doctor of the study who gave permission for Seth to proceed with infusion #9, but did give him Benadryl and want him to take it for the next few days. Hence why MY picture is featured today, NOT Seth’s!) Thanks, everyone, for your care, concern, love, prayers, and tangible gifts of support to keep us going during this journey. Thanks and praise to God for giving us more time.

MEDICAL UPDATE 2.4.2019

Clinical trial IMCgp100 infusion #10 is done. We are waiting through a series of post-infusion vitals, Seth’s port will be de-accessed, then we will be cleared to make the drive home. Today happens to be World Cancer Day, so let me take a moment to provide a little education on Seth’s specific type of cancer. Every year, 6 in 1 million people are diagnosed with ocular melanoma, a very rare eye cancer. 50% of those patients experience metastasis, so the type of metastatic melanoma we are experiencing is INCREDIBLY RARE. Only 3 in 1 million people completely understand what Seth is going through right now. His cancer is considered an “orphan cancer,” meaning it is so rare that it doesn’t get much attention or funding for research. But as far as we know and have been told, the trial he is on is specific to his diagnosis of metastatic uveal melanoma. We are grateful that he is able to continue on this trial for the next 8 weeks, and we are hoping he will be able to continue for another 8 weeks after that and beyond! In other news, Seth landed a HUGE deal at work this week, so it is possible to live with metastatic uveal melanoma AND make major business deals at the same time. Way to go, Seth!