The one-year anniversary of my 46-year-old husband’s passing is approaching in six short weeks. The idea of having an annual memorial event crossed my mind fairly soon after his passing. In fact, the concept was clear from the start. It’s never changed, never wavered. But months slipped away and I honestly forgot about it until a few weeks ago when I realized that the one-year anniversary was approaching and this was my ONE chance to start a memorial event or add it to my list of great ideas that never materialized. For better and for worse, I picked up the vision I had months ago and decided to go for it.

Before we dive into the back story and details, I want you to know that I dream big. I also dream deep. My visions are bigger than my britches, most often holding deep meaning for both me and those impacted by implementation of the vision. I confess. This dream is big. But even mores0, it’s deep. In order for this memorial event to work, you might have to dig deep. You’ll likely have to get at least a LITTLE more courageous than you normally would. You’re going to have to do things you would do if you were living your last days of life.

Why am I doing this, you might ask? What compels me to do such a thing?

My husband of 21 years and father of our three children battled eye cancer, then eye cancer that metastasized to his liver, abdomen, rib bones, spine, and lymph nodes for a grand total of five years two months. We HAD TIME and MADE TIME for a proper diagnosis and the very best treatment and trials we could find. We prayed, garnered support, and did everything, absolutely EVERYTHING in our human power to give him the very best chance at life. A much LONGER life is what we wanted, of course. But we got five years two months from the time of diagnosis to the time of his passing.

Shortly after we found out my husband’s eye cancer had metastasized, I began reading heavy duty research articles. I’m talking HEAVY. One after another, every step of the way, I’d read everything I could find that applied to his incredibly rare form of cancer – the treatment we were receiving, the likelihood that any given treatment or trial might work, the ins, outs, probabilities and prognoses of pretty much everything we went through. As a result, I spent almost two years preparing myself for what the inevitable result would likely be. The downside of this is that I bore a heavy mental, emotional, and spiritual burden. The upside is that I had lots of opportunity to grieve and be prepared.

My husband approached our eye cancer journey with an optimistic spirit, as he did everything in life. He was determined to continue living life well and not let cancer interfere with the ups, downs, and monotony of everyday life. His greatest desire was for life to be as normal as possible. So we went to treatment, traveled extensively for trials, had all the required routine and non-routine scans, and took ALL the bloodwork and then some. But after each of those cancer events, my husband wanted to turn cancer OFF and not think about it until the next treatment, the next trial, the next scan, the next time he had to go in for bloodwork. He successfully compartmentalized cancer from the rest of his life for a very long time. In fact, for HIM, the reality of his cancer getting worse didn’t truly kick in until LESS THAN THREE MONTHS before he passed away and things were looking pretty dire. We got word that the cancer had spread to his rib bones and abdomen lining on December 20, he stopped working on January 13, we were told the cancer had spread further to his spine and lymph nodes and that he had “weeks” to live on January 22, it was time for hospice on February 14, he entered hospice on February 21, and passed away March 10, 2020. The downside of all this is that my husband didn’t have as much time left as he thought he did. The end TRULY crept up on him; I know for a FACT that he did NOT finish some things he intended to finish. The upside is that he lived the last two years of his life fully, without concern, with a spirit of optimism only he could pull off. And that is to be commended.

For quite a while, I’d been thinking that I wanted ONE last dance with my husband. I couldn’t remember the last time we slow danced together, I loved memories of dancing with him, I wanted to feel close and intimate that way one last time, and I wanted to know when our last dance was so I could soak it all in. But to be completely honest, I was seriously reluctant to share this desire with him. I know it sounds crazy given the fact that we were together for almost 25 years and married for almost 22. But he wasn’t a super sappy, overly romantic kind of guy, and given the fact that our children were only 8, 14 and 17 at the time, we’d agreed that he’d place all of his extra last-days energy into the kids. But the thought of a last dance kept coming to mind. It was a deep desire of mine. So much so that I had the song picked out. Sometime between January 22 when we found out he had weeks to live and February 21 when he went on hospice, I shared my wish with him. I told him I wanted one last dance. But it was too late. He was too weak. Cancer had taken too much from him. He didn’t have the mental or physical wherewithal for anything other than surviving each day. He barely made it through three last one-on-one dates with each of our children. He could barely get himself upright enough to eat the dinner my friends brought over for our last date night in bed. We never had that last dance.

In contrast, we said ALL the last words we needed to say to each other. Our first round of last words started with our last date night, which was in bed, fully hosted by four of my friends. One friend created a list of discussion questions that covered the span of 25 years we’d spent together. It was something we could do in bed. And thankfully, he was still fully coherent at that point, so we covered every question and he didn’t miss a beat. It was during that conversation that he shared the biggest single impact I had on him in our 25 years together, and it was BIG, something he’d never shared with me before, and honestly I was taken aback because it was the greatest compliment he could give me knowing all I knew about him. He said I made him a more Godly man. There were lots of last “I love yous.” In the final days, that’s all you really need to say. Just one more time. One last time. In case it’s the last time. There’s nothing more to say, really, when the end is near except “I love you.” Then came what could have been his last words, on day 11 of being bed bound, less than 18 hours before he passed away. He had been in and out of coherency for six days (mostly incoherent to be honest), so when he said one last 8-word sentence of mutually edifying gratitude that brought us all the way back to the first six weeks of our relationship in the spring of 1995, it was the truest, most meaningful thing he could say to bring things full circle for us. I honestly thought those were his last words to me. But they weren’t. Six hours later, he woke up and his eyes were glazed in a way I’d never seen before. I knew things weren’t good. I knew this might be his last day. It was in that early morning hour that he MIRACULOUSLY mustered up his true last words to me. Two sentences. One 11-word sentence telling me how he’ll be with us. And one LAST three-word sentence. “You’re the best.”

He passed away 12 hours 45 minutes later.

I feel like I should end this now. I want to. I really want to.

But this is not our end.

We are still alive.

We have a chance, my friends. To have that last dance. To say those last words to someone special.

We. Are Still. Here.

If you think you’ll have time at the end of life to do all the things you want to do and need to do, I promise you might be wrong. Only God knows the number of our days. So better to live now, friends.

Let’s do two of the things that mattered most to us – one we WEREN’T able to do and one we WERE able to do – in my husband’s last days on earth. Enjoy one last slow dance with your spouse, fiancee, boyfriend, girlfriend, significant other, partner, lover, flame, forever, your person, whatever you call them. Share last words with a loved one.

Last Words. Last Dance. Choose one. Choose both. It’s up to you. Follow your heart. It’ll guide the way.

On the one-year anniversary of my husband’s passing, March 10, 2021, choose a special slow song, turn off the lights, light a candle, and dance with your love. Soak in the moment. Enjoy it. Be fully present. Just dance. Or maybe you feel called to share words with someone special. Maybe you need to call someone and forgive them. Maybe you’ve been holding back and simply need to say “I love you.” Perhaps you need to text and tell someone why you’re proud of them or how they’ve had a positive impact on your life. Maybe you need to send flowers and include the deepest, most meaningful words you could ever tell someone on a tiny 2 x 3 card. I don’t know what it is you need to say. But you know what it is, you know who you are, and you know who that special someone is. After we’ve danced and shared words of importance, we’ll gather together in a private online space – a private Facebook group – where we can share our experiences with these “last” words, this “last” dance. Maybe you’ll share a lot with the group. Maybe you’ll share a little. Maybe you’ll share a video of you dancing. Maybe you’ll share a photo. Maybe you’ll summarize in one quick sentence. Maybe you’ll write the story out so we can hear the whole thing. I don’t have any expectations other than I want to be a part of creating something holy out of my husband’s passing, and I hope you’ll participate and share SOMETHING in the private Facebook group so we can all learn and grow from one another’s stories.

That’s it. That’s all there is to it. It’s easy and yet SO vulnerable. I ask you to consider taking part because this will ONLY work if people participate. If it goes well, I’d like to host this memorial event every year on March 10, the anniversary of my husband’s passing. I believe there’s potential here for holy, life-changing moments. So let’s make it happen. Let’s live. NOW. Let’s do this. Let’s live March 10th as if it’s our LAST with last words, a last dance, or both. Please and thank you. Let us love and live.

If you have ANY interest in participating in this memorial event now or in the future, please click here to join the private Facebook group I’ve named Last Words. Last Dance. Between now and March 10, I’ll be sharing updates, reminders and helpful hints. And on March 10, the one-year anniversary of my husband’s passing, we’ll join together to make this thing happen.

 

 

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

 

The first day of my husband’s bucket list trip to Walt Disney World with Stage IV Metastatic Uveal Melanoma didn’t start out quite so magical. We arrived at the gates of Magic Kingdom bright and early. I’d timed everything perfectly so we’d be there for the park’s 9 am opening. Everything was going great until we scanned our magic bands to get in and discovered that our 5-day park tickets had expired and we hadn’t even been to one park yet! “This should be easy,” they said. “No problem,” they said. “We’ll just take you over here to guest services and they’ll take care of this for you.” After waiting in a line and another 15 minutes at guest services with a cast member on the phone with our resort, our 5-day park tickets were finally valid and ready to go.

Did I mention that I grumbled a bit while we were waiting patiently (and not-so-patiently) at the guest services desk? “All they need to do is change ONE date for FIVE people and this will be solved. Walt would find this unacceptable,” I said. “The people in this line should be top priority of the whole park right now. These peoples’ days aren’t starting out magical at all. Walt would do everything he could to make this experience as quick, as easy, and as magical as possible.” Breathing slowly and looking away from the cast member whose extended phone call was causing me slight first-day-of-vacation agitation, I reminded myself that we weren’t entitled to magical beginnings just because my husband has Stage IV cancer.

After the ticket debacle was resolved, we made our way to another guest services building where we signed up for disability access service, then continued down Main Street. Who doesn’t love Main Street at Magic Kingdom? If anything will cheer you up and get you feeling good, it’s Main Street and that spectacular castle. We stopped for a photo with the Disney photographer. Then one teen wanted individual pictures by the castle and they didn’t quite turn out they way she wanted, so we had to take more and then a few more. Then one teen was getting grumpy from “too many pictures” and my husband said “yeah, maybe let’s get going and not take pictures for a while.” Phew. Breathe deeply. It’s okay, people. Maybe the morning didn’t start out perfectly magical, but it’s ALL good. Let’s regroup and make our way to Adventureland! It’s time for an adventure!

We regrouped successfully. As we made our way to the entrance of Adventureland, we approached two cast members wearing Disney pin trading satchels.

(Please note, had we NOT made ALL of those stops prior to this moment in time, we very well would have NOT had such an incredibly magical day. So if things aren’t going quite the way you hoped, keep moving. Life might not seem totally magical now, but it will in time. Just wait and see.)

So back to those cast members wearing Disney pin trading satchels who we approached so we could look at their pins and make our first trades of the trip…

It was an ordinary interaction for a while. My husband traded a pin with one of the cast members. Then our youngest made a trade. Normally, at that point, we’d say thanks and move right along with our adventure in Adventureland. But these cast members wanted to know more about us. Where were we from? We scored some bonus points when we said we were from Seattle because one of the cast members was from Seattle and she knew exactly where we live! Were we planning on going to the parade this afternoon? Do we want to know some inside secrets about where the BEST place is to view the parade? Brick, the other cast member, broke out a map, showed us the parade route, circled the best place for us to view and explained why.

At that point, I was moving into writer zone. Writers know what I’m talking about. The moment when you realize a bit of a story might be unfolding. To me, this was a story about a man named Brick who was deeply committed to his work at Magic Kingdom. This was a story about a man who LOVED his worked, loved this place, and wanted to invest every second he could into every family who approached him to give them the most magical day they could have. I wanted to know more about this Brick and what made him so passionate about his job. I LOVE people who LOVE what they do.

Brick was taking a LOT of time with us, an unusual amount of time, I have to say. In nearly 21 years of going to Disney as a married couple and as a family, we hadn’t had this much personal interaction with a cast member. Like I said, I thought it was a little odd, but let him keep chatting with us and engaging with us. This, after all, is the magic of Disney.

We admired Brick’s favorite pins on his hat, and he told us a little about his 29-year career at Disney. But then. BUT. THEN. Brick brought conversation back to the parade, asked us to show him how we’re going to wave at the parade as it comes down the street. Okay??? We all waved for him, some of us a little more excitedly than others. Again, it was a little odd, but we all complied and engaged Brick kindly and graciously as we would anyone else! I don’t recall exactly how or exactly what words he used, but it was at that point that Brick asked us the question of all questions. “Do you think you could wave like that in the parade? I want to invite you to be the Grand Marshals of our parade today!”

Oh my goodness. Tears streamed from my eyes instantly. “Oh my goodness. You have no idea,” I said to Brick as I looked at my husband and gently touched his arm. “That would be AMAZING because he has stage IV cancer.” Everyone beamed with excitement as Brick proceeded to give us instructions as to where to meet, at what time, and how this Grand Marshal thing was all going to happen.

As we left Brick that morning, we wondered, how in the world had this incredible, amazing, magical thing happened to us?! Only God. Yes, only God could make such a thing happen. Brick had NO idea about my husband’s Stage IV Metastatic Uveal Melanoma diagnosis, but God did. God ordained our every step. Had our timing been different that morning, Brick and his colleague would have picked a different family as Grand Marshals. But there we were at the perfect place at the perfect time picked perfectly for this incredible, once-in-a-lifetime experience as Grand Marshals of the Festival of Fantasy Parade at Magic Kingdom. Oh. My. Goodness. This was only God.

I don’t really have much else to say. I’ll let the slide show tell the rest of the story. But here’s what I want you to know. I cried 1/2 to 2/3 of the way through that parade. Why? Because the experience was completely overwhelming, “surreal” as my husband so accurately stated. As we made our way down the parade route, God revealed to me that he will provide for us, even in the midst of our darkest, deepest trials. Second, and even more important, He has a heavenly home prepared for us and it is going to be grand and wild and magical beyond our imagination. Us being Grand Marshals in a Disney parade was a once-in-a-lifetime God-ordained experience that 99.9% of people won’t ever have. BUT I promise you, God has extended you an even GRANDER invitation, an invitation to ride in His chariot, to enter His gates, to ride to the palace where  streets are gold, where everything is good, and tears are no more. Accept the invitation and He will give you the ride of your life. They’ll wave and He’ll smile. Well done, good and faithful servant. Well done.

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.

 

 

We were in our bedroom when the call came in from the doctor. The tumors in my husband’s liver had grown by about 20% in size. Where there were 8-10 lesions upon original diagnosis of metastatic uveal melanoma on June 15th, there were now 14 on September 7th. His liver enzymes were notably elevated, indicating injury or inflammation. We’d need to see a gastroenterologist to get those liver enzymes under control. And since the tumors had increased in size and quantity, the immunotherapy treatment of Yervoy and Opdivo was deemed to be ineffective. The next best treatment option was a clinical trial in Denver. The gastroenterologist told us it would likely take “a good two months before the liver enzymes [were] stable and [he’d be] off all meds” used to bring enzymes back to normal.

Today marks FOUR months ONE week since my husband’s metastatic uveal melanoma diagnosis. TWO months TWENTY days since he received his last treatment for metastatic uveal melanoma. TWO months EIGHTEEN days since his first ER visit. TWO months SIXTEEN days since his second ER visit and hospital admission. ONE month FIFTEEN days since we found out the tumors were increasing in size and quantity. ONE month EIGHT days since we saw the gastroenterologist and began an intense pharmaceutical regimen to get the enzymes down so my husband’s liver would ready for the next treatment, a clinical trial called imcGP100. ONE week since we found out that the clinical trial will be Portland instead of Denver. ONE week since they sped up steroid tapering to get things moving faster for us. NINE hours since my husband went in for labs to see where things stand today. TWO hours since my husband texted letting me know that his liver enzymes are both finally back within normal limits after being elevated for more than two months.

So much unknown. So much uncertainty. So much waiting.

So much patience, trust and faith to get through these trying times.

Back in mid-July, I knew I was going to need extra layers of support in order to get through this experience. So while we were waiting for one of my husband’s appointments at Seattle Cancer Care Alliance, I stopped by the family and patient resource center and grabbed every handout on caregiver and family support I could. They all led me to Cancer Pathways, a nonprofit dedicated to supporting patients and families dealing with a cancer diagnosis. I submitted an online application indicating interest and providing information about our family’s situation, and soon heard back from Maddie, the person responsible for coordinating services for patients and families. By late July, Maddie and I were playing email and phone tag in an effort to connect and get me “interviewed” so we could find the most fitting caregiver support services.

Phone and email tag wasn’t cutting it. I knew I needed to find at least one extra layer of support and sooner was better than later.

Mid August, I joined a closed Facebook group for spouses of uveal melanoma and metastatic uveal melanoma patients. A couple weeks later, I joined another closed Facebook group for metastatic uveal melanoma patients and spouses of metastatic uveal melanoma patients. Since joining those closed groups, I’ve become Facebook friends with three young wives whose husbands’ had or have a diagnosis of metastatic uveal melanoma; all three of those wives have young children and understand the impact this diagnosis has on the family. First layer of support? CHECK.

In August, we met a couple at our church who have a son our son’s age, and who also happen to be building a house two doors down from us! Early September, I was seriously debating whether I should join a small group to get to know more women in our church, or whether we should join a married couples small group. One week before sign up, I happened to grab an info packet describing each small group. But the week passed and I hadn’t taken one look at it. I was on the verge of giving up on the idea of a small group. Time had run out. But I had that packet and a 10-minute drive to church. So I sat in the back seat and scanned through the group descriptions as quickly as possible. There it was. Staring back at me as if it was meant to be. The couple we’d met a month before, the couple who were going to be moving in just two doors down from us, were hosting a small group and they were open to new members! We signed up for their group and started attending the next day. The group has been a tremendous blessing and thick layer of extra support during this journey.

In August, I also began researching counselors. I wasn’t 100% sold on a counselor for myself, but I’d spoken with someone who lost his brother to cancer and he said he wished he’d begun counseling sooner, so I thought I should at least research. One referral led to another, and I found myself a private Christian counselor 15 minutes from our house. She didn’t accept insurance, but specialized in cancer patients and family members of cancer patients and came well referred, so I knew I’d found my person. She and I agreed to a 1x/month session, which is all I need, can handle, and can afford right now anyway. Our first session was excellent and provided an added layer of education, empathy and practical suggestions I can use during difficult times.

Then things finally came together with that nonprofit, Cancer Pathways, in Seattle. Last month, I joined a support group for families who are facing a cancer diagnosis in the family. I was blessed to find myself in a group of six women, all younger moms whose spouses had or have a cancer diagnosis. Two women in the group recently lost their husbands to cancer. Four of us have husbands with some sort of cancer diagnosis. It was a six-week group and our last session was last week. A new group will resume in January after the holidays. In the meantime, I can tell you this. The layer of support provided by that support group was incredible, deep, rich, a profoundly beautiful gift of connection and authenticity with women who understand what it’s like to live with such uncertainty.

Why share all of this? Why not stop after the medical update? Because one of my greatest hopes for sharing publicly is that MY STORY will inform, influence and inspire YOUR STORY. My ultimate desire is for YOU to see the significance of YOUR story. If we’re going to see our stories as having significance, then it’s crucial that we’re honest about life. Serious life circumstances have serious implications for all parties involved. When serious life circumstances come crashing at your door, the likelihood is that you’re going to need additional layers of support to get you through. In my case, I knew I was going to need more support to get through this. In fact, I told Maddie at Cancer Pathways when I originally contacted her three months ago, that I was just looking for “more layers of support.” What I didn’t know THEN that I know NOW, is that I needed SEVERAL LAYERS of support. I needed two closed Facebook groups, individual contact with moms whose husband’s were or are facing the same diagnosis, a weekly small group through church, monthly individual Christian counseling, and a caregiver support group in order to feel like ALL the bases were truly covered and I was getting ALL the support I needed. It was an incredible realization, actually. To realize you need an extra FIVE layers of support is humbling.

Here’s what you need to hear. You might need MORE support than you realize to get through what you’re going through. Reach out. Talk to a family member, a friend. Gather a group. Send an email, a text. Make a phone call. Connect with a counselor. Connect online. Find a support group. Join a small group. Get help with meals, cleaning, child care. Ask for a break. Breathe. Accept help when you get it, and don’t be afraid to accept help that’s offered repeatedly, from that same person, over and over again. They want to help you. Accept it. Do something different. Step out of your box. If something comes to mind that might be helpful? Try it. You need support. It’s okay to say you need an extra layer of support. It’s okay to say you need extra LAYERS of support to get you through whatever you’re going through. Peace be with you, my friend. Your story is important. Be blanketed in layers of love, care and support.