My 46-year-old husband was on hospice for 20 days. He was bed bound the final 12 days, and confused and disoriented 60-90% of the time in his final eight days. Metastatic uveal melanoma stole his life the evening of March 10, 2020. What started as a single tumor in his eye the first month of 2015, ended the third month of 2020 with countless tumors consuming his liver, abdomen, rib bones, lymph nodes and spine. At 43 years of age, I am now a widow with three children under 18 years of age.

This is not the fairy tale I imagined my marriage to be.

We were married for 21 years 8 months. I wanted to be the old married couple with heads of gray hair, holding wrinkled hands, taking lazy naps together in the afternoon. I wanted to be the couple that was married 50 years, maybe 60 if we were among the lucky. It was possible. It should’ve been possible. I wanted to be an example for our children and our grandchildren that love endures all things, believes all things, hopes through all things. I wanted to greet our grandbabies in the hospital, bring our children and grandchildren on a cruise, retire near Florida and visit Walt Disney World as often as we wished, just as we’d planned. I wanted us to die old together. I wanted the great love story.

We planned and assumed all kinds of things for these middle life years. The promotion to Director he’d worked hard for for way too long. Family vacations to Colorado, Hawaii, the Mediterranean, Europe, Washington D.C., Australia, Tahiti, Africa (and Disney). Homecomings. Proms. Three kids’ high school graduations. Three kids’ college visits. Three kids’ college graduations. Kids’ engagements, bridal showers, weddings and daddy/daughter dances, moving kids in and out of dorms, apartments, townhomes and first homes. Him seeing my dreams to be published come to life. Me seeing his backyard gardens come to life. Us painting the living room, getting curtains, making this house and others our home. Experiencing our prime years together, forever. I wanted all of that for both of us. I planned it would be so.

There were things I wanted to do in the final months and weeks that we never got to do. Take an intimate non-work trip, just the two of us, to a relaxing, warm-weather destination (likely a cruise since that was our favorite). Take the family to Leavenworth, a Bavarian mountain town in Washington for a weekend getaway. A date night to Chihuly Gardens downtown Seattle, a place he’d never been but I thought was beautiful. An intimate dance in our bedroom that he was way too weak for by the time I got up courage to tell him it was one thing I’d still like to do if we could find a way to make it work. I wanted those things for both of us, for all of us. I hoped they would be so.

This is not the fairy tale I imagined my marriage to be.

But as we faced those final days together, it became clear that we DID get our fairy tale. We met and fell in love when we were 18 and 21. Three years later, we were college sweethearts surrounded by 211 loved ones on our wedding day. Not once, but twice, we moved away, far from home, and made a way all our own. We lived in apartments and townhomes and owned three homes together. We made three beautiful children, a boy and two girls. Who could ask for more? I supported his career, and he supported my career, my call to transition careers, and my constant quest to balance family and career. We made beautiful gardens, beautiful homes, and took amazing vacations. We had good friends, good churches, and good neighbors. We loved each others’ families and supported each other through thick and thin. We made it to our 20th wedding anniversary PLUS a year and eight months more. And by the end of next month, we would’ve been together 25 years. The years were getting up there, if I do say so myself.

Times weren’t always easy, but that’s what makes a good fairy tale. There were years upon years of significant family of origin stressors. He always worked too much. I never found my sweet spot between work and motherhood. He would’ve preferred I work full-time, always. I knew I couldn’t manage full-time work with him working all the time AND be the mom and wife I wanted to be. We experienced a cancer diagnosis, followed by a a 9 1/2 month layoff, followed by a cross-country move with three kids, followed by a metastatic cancer diagnosis. There were secrets revealed, a problem or two we never truly addressed, and in the last five years of marriage, we discovered the core difference between us that we would’ve never, ever been able to change. We fought about how much space to put between plants and trees, and it took us forever to agree on pretty much everything we bought for our home. Yeah, we put our two first-born tendencies to the test those 21 years and 8 months!

 

But every good fairy tale has a resolution, a happy ending of sorts, even if it’s sad.

I saw him through health, but I saw also him through sickness. We fulfilled our marriage vows, till death do us part. In those final weeks and final days, I was there when one doctor told us it “might be a matter of months,” then another told us it might be “weeks,” and another agreed it was time to transition to hospice. We did everything, absolutely everything we could do fight the beast. Everything, I’m telling you. Everything, I’m telling myself. I asked and double asked, checked and double checked, advocated and researched and followed every trail across the nation so my handsome prince could live longer. But it was not to be.

He planned and I planted trees in his honor. I requested and he wrote legacy letters to all three children. He bought me a ring to wear with my wedding ring on my right ring finger. We had all the support we needed in those final days, and I had all the alone time I needed with him. We had a beautiful last date in bed, thanks to four beloved friends who made great lengths to make it so. I took opportunities to lie next to him, hold his hand extra long, and kiss him until he couldn’t kiss anymore. I said all the things I needed to say. I gave our children every chance to come in and say good bye to daddy one last time. I heard his beautiful last words to me not once, but twice. Once, the night before he passed, and again the morning he passed. I served him with all my heart those last days. I wasn’t a perfect wife, but I was his wife. And when he passed, I was there. It wasn’t easy, but I walked him home.

You see, I got my fairy tale.

It just ended sooner than I wanted it to.

With all my love,

 

We received a call from the oncologist bright and early the morning of February 14, 2020. It was the Valentine none of us wanted, news that my husband’s bilirubin had gone up by more than a full point instead of continuing to go down like we needed it to. This news disqualified him from the clinical trial we were supposed to start in Nashville six weeks prior. This news also disqualified my husband from all trials and treatments for metastatic uveal melanoma available anywhere.

“I’m worried we could be coming close to the end. Our choices are looking pretty limited right now,” uttered the doctor with a tad of sadness in his voice.

“We’re talking about a hospice decision then, I think,” my husband replied.

“I think we are,” said the doctor.

We grieved amongst ourselves, shared the news with my husband’s parents who had arrived nine days prior to help us out, then called my mom and dad before the kids came home to a hunt for 72-piece boxes of Russel Stover chocolates my husband had bought weeks ago so they would never forget this Valentine’s Day. We let our two teenagers go on their dates without any worry the bad news would bring. Then we enjoyed pot stickers from a local sushi restaurant, a heart-shaped bake-at-home pizza, and “Chances Are” with my in-laws in the comfort of our living room. It wasn’t the romantic end-of-life, last Valentine’s Day date you’d imagine with your husband, but it was simply and realistically romantic nonetheless.

The next day, we had to tell the kids. Ugh. The conversation NOBODY wants to ever have with kids under 18, all still living at home. Dad’s labs went up again. We are out of treatment options. Dad is going to be going to heaven to be with Jesus soon. Crying. Crying. More crying. This is so incredibly sad, so incredibly painful, something I never, ever want to do again until I am at LEAST 75 years of age, please and thank you, Jesus.

It was then time to share with siblings and our very closest of friends. We gave our parents permission to share with aunts, uncles, cousins and long-time friends who are like family. Within hours, my mom scheduled a one-way flight to Seattle, and my brother-in-law and sister-in-law had scheduled flights for a 4-day visit as well. Four days later, we made the news public – to almost everyone else we’ve ever known – through a post on Facebook drafted by my husband.

One palliative care appointment and one Cancer Support Group later, I found myself in Whole Foods on the phone with the oncologist, verifying that YES indeed, there are NO trial or treatment options left, that EVEN IF my husband’s labs miraculously came down into normal range, his body wouldn’t be strong enough to withstand the side effects of trials and treatments. I asked him twice, just to be sure I heard it right, just to be sure I understood that is EXACTLY what he meant, thanked him for being honest and supportive, and verified that YES, we will be moving forward with hospice.

It’s been a whirlwind of 13 days since we received the Valentine none of us wanted.

13 days and we’ve already met with the hospice intake nurse, head nurse and head social worker assigned to our case.

13 days and I’ve already made two emergency calls to the nurse needing recommendations about how to best increase my husband’s pain medications.

13 days and I’ve already spoken at length with Safe Crossings, an organization dedicated to providing pre-bereavement and bereavement services for children.

13 days and the hospice chaplain called.

13 days and we’ve already had a brother-in-law and sister-in-law here for a four-day visit, one set of parents flew out but will undoubtedly be flying back in, another parent flew in, a friend is flying in, and the other brother is flying in for a three-day visit with his girlfriend.

13 days and I have 72 heartfelt texts and a countless number of Facebook messages I probably won’t get to for weeks.

13 days and I have lovely folks offering meals even though I haven’t even requested any.

13 days and nine playdates from nine different families for our youngest.

13 days and a teen texting big questions about what’s going to happen.

13 days and the other teen stepping up to the plate, popping in bedside and couchside to ask how things are going, how are you feeling?

13 days and I wish I could explain how I feel. I wish I could wrap my mind around everything. I wish there was time to process this slower, to experience this more richly, in a timeline that matches the speed of my heart and soul. But life and death don’t always follow the perfect pace of our heart and soul, so I’ll catch up someday. I’ll burst, I just know it. The time will be wrong, but it’ll be oh so right. For now, I face each day bravely, as is. Getting pain meds. Getting morning meds. Bringing fresh water with lots of ice. Bringing another chair to our bedroom so we can all watch TV bedside instead of couchside. Sitting on the chair and chatting while my husband tries to eat a little lunch lying down. Sorting through pictures. Taking pictures of pictures. Sending requests for more pictures. Doing finances, canceling credit cards, verifying beneficiaries and bank accounts, making sure all of my licenses are set up and ready to go for plan A and plan B. Meeting with the funeral director. Arranging playdates. Asking for rides. Scheduling the pedicure our teen requested with her daddy. Bothering my husband (again) about finishing his legacy letters for the kids. Tickling him tenderly when he needs it. Taking time to hold his hand and just look at him and feel him next to me. Texting a friend to buy me another 4 waterproof pillowcases, putting them on top of the waterproof pillowcases I already have on the pillows, then taking them all off again when they’re sweaty all the way down to the pillow, then washing them and putting them all back on again once a day, every day, times four pillows. Dealing with daily junk I despise at such a time as this, like phone calls to insurance to get reimbursed for a dealer visit to fix wipers that weren’t fixed properly after our windshield was replaced two months ago, and second grade Eureka math that isn’t-so-eureka to try and explain and why in the world can’t we just put these numbers in columns and add ’em up instead of making this a five-step process? Trying to breathe, fitting in walks or hikes here and there, going to once-a-week grief counseling appointments, attending bi-weekly art therapy support groups, drawing boundaries, knowing what I can and can’t do, and working hard to blow it off when I sense other people judging the way the kids and I do life. Remembering that God is still here, even when it’s so loud, so busy, way too fast and and SO incredibly hard to believe. Believing that I am beloved, that my children are loved, that my husband is loved, even when it feels like we’ve been assigned to a rare, incredibly abnormal life while the rest of the world gets to go on with normal life. Trusting that God will take care of his son, that we will take good care of our husband, our dad, as we walk him home to heaven. Knowing and resting in every truth. Breathing. Breathing once again.

Hallelujah, this is the Valentine NONE of us wanted. But we will do this. We have done this. We will continue to do this. We will make it through hard things and heavy things and we will all receive healing in due time. Good things will come of this. Good things will come. This is not the end, no. This is not the end. We believe this is not the end.

My husband’s mid-month MRI didn’t bring good news. As if the December 20th bad news that the cancer had spread from his liver to the abdominal lining and rib bone wasn’t bad enough, we found out on January 22nd that the cancer had become even more aggressive. There are now more tumors in the liver, the large conglomerate mass in his abdomen has become even larger, there is a new large mass in the abdomen, several lymph nodes are involved, there’s the tumor on the rib bone, and now there are also several small tumors on the spine. This wasn’t the news we wanted. This wasn’t the news we expected. This isn’t the news anyone wants to hear ever.

And then there was the bilirubin issue. It had risen to an all-time high of 6.4 right around the time of that mid-month MRI; 1.2 or lower is normal. They’d told us there might be blocked bile ducts, we had a failed ultrasound because there were too many tumors to visualize the ducts, then came that MRI. The radiologist said there weren’t any blocked bile ducts, but second and third opinions from surgeons suggested there were constrictions in the bile ducts and surgery should be scheduled ASAP so we have one last CHANCE at getting this bilirubin down to 1.5 or lower so we can have one last CHANCE at going on the clinical trial in Nashville.

The morning of December 20, 2019, we both woke up thinking the cancer was still confined to the liver and all the labs were acceptable for starting a new clinical trial on January 2, 2020. We woke this morning, the morning of January 31, 2020, and my husband is now on full-time short-term disability, the cancer has spread all over his body, and we can’t start any trial or treatment unless his bilirubin can get from a current 4.7 to 1.5 or lower.

“There’s a CHANCE we could get on a trial.”

“There’s also a CHANCE this could go downhill fast.”

We chose to take a CHANCE. We chose to have surgery to place stents in my husband’s bile ducts. We chose to do it on Friday instead of waiting until the following Wednesday so we’d have a better CHANCE at getting the bilirubin down sooner rather than later, a CHANCE to get on the clinical trial sooner rather than later, a CHANCE to get treatment for the tumors sooner rather than letting them grow more.

“Do you think we should meet with palliative care?”

I chose to take a CHANCE, to ask the question that no doctor, no nurse practitioner, no nurse, no medical assistant, no social worker, no NOBODY had EVER asked us in 19 plus months of dealing with this incredibly rare form of cancer called metastatic uveal melanoma. I chose to take a CHANCE on behalf of my husband, on behalf of myself, on behalf of our children and our families. I chose to take a CHANCE when I asked this question because for four months, I KNEW in the depths of my gut that nobody was properly managing the symptoms and side effects my husband was experiencing from cancer and cancer treatment. And that is NO way to live, NO way to live your life.

“I’ll send a referral, but I don’t know how quickly they can get you in.”

It took eight days to get into the palliative care practitioner. She was beautiful and lovely, with glowing, loving eyes that understood all the holes in our care that hadn’t been addressed for months. She took time to hear about the pain and the nausea, about not being able to eat and sleep, about the pressure in the abdomen, about the worries associated with stage 4 cancer. She was smart and quick, with words that came swift and easy, with fingers that flew across the calculator as she tried to determine which patch dose would best alleviate my husband’s pain while we continue to navigate this bilirubin issue, while we wait for another CHANCE at treatment. Despite common beliefs, palliative care isn’t about dying, it’s about trying to LIVE better. It’s a CHANCE at living better, a CHANCE to live a higher quality of life than you’ve been.

I told my husband right there, right then and there in the palliative care room that THIS is the kind of medical work I could do. THIS is the kind of care I’d want to offer people if I was in medicine. In fact, THIS is the ONLY kind of work I’d want to do in medicine. Caring for people and helping people live better. THIS is holy and good work, indeed.

We all have a CHANCE. One CHANCE at life. ONE CHANCE, friends. That’s it.

Whether we live well, or whether we live in pain and purposelessness, that’s up to us.

Live well every day.

Take a chance now. Now is the only time to do whatever it is you’re supposed to do. Now is the only time to do what you WANT to do. Now is the only time to do what you NEED to do. Now is the time.

Live well every single day, even if all feels lost.

This is your moment. This is your time to shine. This is your time to break through and see that you have significance. This is your time to see that your life is a story, and your book isn’t finished yet, friend.

Live well every single blessed day, even when you’re exhausted.

Take a CHANCE at sitting and doing absolutely nothing for a moment. Put your feet up. Listen to some cello, stare out at the rain or snow. Wallow in the pain. Be sad. Just cry. Do whatever you need to do to cry. Lament all the things gone wrong. This is your CHANCE.

Live well every joyous day, because this is your LIFE. This is your CHANCE.

Love your parents. Love your kids. Love yourself. Take a look at who you are and be your very best self. Take a look at your parents, your kids, your friends, your loved ones and every blessed folk you pass by, and say YES, this is our DAY to love and live and take a CHANCE on living our very best life. These people are amazing. I am amazing. I can live and I am here. I am living life. I am alive.

God bless us, we are alive. Today we are alive.

Let us live.

Let us take a CHANCE.

Today.

We live.

My husband bumped into Maurice at the LAX airport on his way to or from the American Music Awards. Maurice, our former neighbor. Maurice, the father of seven, of eight we later ran into at parades, BBQs, church services, Round Up nights singing songs around the fire, random places like Walmart’s baking goods aisle before we moved from Minneapolis to Seattle. “It was good to see Maurice,” my hubby proclaimed. Of all the people he’d run into at LAX, of course it was Maurice. Us, now in Seattle. Maurice, in Minnesota. Seth and Maurice at LAX. A happen chance. A happen stance.

“You could tell there was a bit of a disconnect when he saw me,” said my hubby. Maurice and his wife had been following our story on my website, perhaps Facebook. Wherever. However. It’s what we intend. To be connected to family, friends, former people once present, active in our lives. To share our story. To give them glimpses into this leg of our way home.

Disconnect.

Hmmm…

“You could tell there was a bit of a disconnect when he saw me.”

“What do you mean,” I asked?

“Well, maybe when he read your posts he thought I was going to be a lot worse than when he saw me in real life?” responded my husband, perhaps a bit reluctant to interpret the disconnected he sensed, never actually asked to be verified.

“He and his son laid hands on me and prayed for me right there in the airport,” he said. “We chatted for a while, caught up a bit before we parted ways. It was good.”

Disconnect.

It bothered me.

I sat still in the dark of the passenger side as our car continued down the interstate to Portland for yet another stage 4 cancer treatment for my husband just one day after he’d returned from his 5-day business trip to the American Music Awards in LA.

Disconnect.

Ugh.

I hated it.

Disconnect.

I pondered. Overthought. Broke out my phone and began typing whatever came out of my fingers. Words. More words. Word after word. I don’t care if this sounds good. I don’t care if this is right or sound terrible or whatever. Just let me write it out. There is something to this disconnect that bothers me to my bones. I don’t like disconnect. It’s not me. It’s wholly NOT me. If there’s one thing, ANY thing I want to be known for it’s connection, not disconnection. Authenticity, not deceit. No beating around the bush for this gal. Disconnect? It’s nothing I want to be a part of. Real. True. Authentic. Being. That’s all I want to be. Forget anything that connects me to disconnection.

If anything. Any ONE thing I’ve tried to do is portray this cancer journey, this stage 4 cancer journey as real, authentic, true. My truest, most authentic words. My truest, most honest retelling of my side of this story, my side of this journey.

So yeah.

Disconnect.

The disconnect my husband perceived in Maurice bothered me. I didn’t want Maurice to sense a disconnect between what he was seeing in my husband in real life and what I had portrayed about my husband in written word. If there was a disconnect, I guess it was my fault? I’m sorry. I’ve done my best to portray truth. But cancer is deceiving. Cancer is a deceitful beast. If anything will make you feel disconnected, if anything will make you second guess what you’re seeing and hearing and experiencing, it might just be cancer. So maybe it wasn’t my fault after all. My telling of the story was my telling of the story. Maurice’s disconnect was just the reality of cancer coming true. Cancer looks normal one day and cancer looks totally abnormal the next. This is the reality of cancer. It’s a walking, breathing, living beast of disconnection.

So I beat my fingers on my iPhone. Yeah, I beat it out. I wrote whatever I damn well pleased. Something needed to get out. I hated this disconnect Mr. Maurice and my Seth had experienced that day in LAX airport. My hubby on his way to or from a 5-day business trip to the American Music Awards, for goodness sakes, with STAGE FOUR CANCER. How can it get any disconnected than that? Forgive yourself, Amy. Give yourself some grace. This is a real life disconnect. The American Music Awards don’t connect with cancer. It’s not your fault. These are walking disconnects. You’ve told the truth. Be still and know you have told your truth. You have not gotten it wrong. Seeing isn’t believing.

Fast forward to the days and weeks ahead.

Sick. Then not sick. Then sick again. Then not sick. Then really sick too far out from the procedure to possibly be tied to the procedure. What is this? Should we call? Should we not call? Should we be worried? Is this a treatment side effect? Is this something else? Who is managing this? Who’s in charge? Who knows what’s really going on? When should we worry? What numbers matter most? At what point to we worry about LDH, ALT, AST, AlkPhos, Bili, this and that? What do all these numbers and letters mean anyway? Doesn’t it matter that this number is high? Doesn’t it matter that this number had lowered and is now higher, and it’s supposed to be getting lower every week? Is seeing believing? Do I believe your words when you tell me it’s a treatment side effect, or do I believe my gut that tells me this is something else?

He flew to Nashville on his own. I stayed behind this time. We decided we could spend $820 on something different. I’d join him next time. Now we only hope there IS a next time. Yes, he verified the morning of that Friday that we’d be getting scan results. Fresh scans. Yes, fresh scans. Oh happy day. Or not. We don’t always know. He FaceTimed me in to the call with Dr. M. Another doctor. Another day. Only this one was good. Very good. Tumors on left side of liver have mostly stayed stable with maybe a little shrinkage. One tumor on the right side grew by 1 cm, but we don’t know if it’s real growth or inflammation. They often say that. What’s a person to know. If a radiologist and oncologist don’t know what they’re seeing, how are we supposed to know what we’re dealing with? Just asking. Who knows? Nobody really. They do their best. They’re only human after all. This I know for sure. And there’s a tumor in the abdominal lining. And on your rib bone. “This is the first time we’ve heard of the cancer spreading outside of the liver, so this is kind of big, bad news for us,” said my hubby to Dr. M. “Yeah,” she replied. As if she was supposed to say anything else. I’m sure she said something else, but I don’t recall now. Seeing and hearing aren’t believing. I watched the raindrops hit my office window and drip down slowly, as if creating an art piece as I listened to the news from Nashville. The cancer has spread.

Oh yeah. His bilirubin is up. So “we’ll need you to go in and get labs when you’re in Minnesota. Maybe on the 30th would be good. That’ll be close enough to the projected start date for the trial that we’ll know if you’re able to start.” Over the course of days and a couple weeks, bilirubin crossed over 1.2, the upper limit of normal, and moved right onto 1.4, then 2.4 10 days later, then 5.3, and now today 5.8. Seeing isn’t believing. Hearing isn’t believing either. Hurry. Rush. Get in for an ultrasound within 48 hours. If a bile duct is blocked, then we can put a stent in and get the bile flowing again and get these numbers down to 1.5 or lower so you can start the trial in Nashville. Hurry. Rush. Get it done A.S.A.P. This is important. This is big. This is urgent. High bili is not good. High bili isn’t healthy. Bili I see. High bili.

He can’t see. The ultrasound tech can’t see. There are too many tumors to see a blocked duct. He literally can’t see. “The ultrasound was inconclusive. You’re going to need a scan.” No CT? Then MRI. “We just had one.” “Have another.” “We should know what’s going on in 48 hours.” “No. Another .5 increase doesn’t necessitate you being admitted or going into the ER for this scan over the weekend. I’ll order a scan for next week. You’ll hear from scheduling.”

Wait. Wait some more. Seeing isn’t believing.

I wasn’t crazy.

Cancer is crazy.

Whatever cancer.

I started writing this series, The Apple of My Eye, back in January 2015 when my husband was diagnosed with a rare form of eye cancer called choroidal melanoma, back when blogging was still popular, back when it was trendy to let your story inspire and speak for itself. But it’s not 2015 anymore. Barely anyone blogs the way they used to. We’re now told that if you want to serve an audience with your writing, you have to have a niche, you can’t just write willy nilly about this and that. You can’t just tell your story and let others take from it what they wish. You must have a dedicated focus, a specific thing you write about, an intentional, measurable way of meeting others’ most pressing need. Yes, times have changed. I don’t write nearly as much for public consumption these days, and I’ve neglected this writing space for nearly three months. I’ve spent lots of time defining my ideal reader, but reality has restricted me from serving her as well as I know I could. The truth is, I don’t have the luxury of worrying about writing and publishing trends right now. I started telling this story in January 2015; even if there are gaps bigger than I’d like, even if it’s no longer trendy to tell your story and let others see its significance, I’m going to tell it anyway. I’m going to tell and keep telling this story, and I will finish what I started. This is for myself AND for others. This is for me AND for you. Yes, against current prevailing beliefs, I believe that story has power, in and of itself.

Some would tell you there aren’t ANY words to describe cancer. I’m here to tell you there aren’t ENOUGH words to describe the cancer experience.

It’s been 17 months since we found out that my husband’s cancer metastasized from his eye to his liver. Three months ago – in August 2019 – his scans were stable according to clinical trial protocol (less than 20% growth since previous scans), but they were “on the plus side of stable.” A key lab that typically indicates melanoma growth had been on the rise for several weeks, and the doctor admitted we’d given this drug a “good college try.” A new tumor presented itself back in May and had grown by July’s scans, so we had to sign paperwork indicating we were choosing to continue treatment despite disease progression. During those months, tumor response to the study drug was more mixed than it had been, so the decision to stay on study hadn’t been as clear as it once was. All of this together, it was time to consider our next-best treatment option. Since there was less than 20% growth, they allowed us to stay on study for another six weeks as we transitioned to a new treatment. There were scheduling nightmares. We met with an interventional radiologist to discuss a liver-directed procedure called Y90, had a mapping procedure, and had the actual Y90 procedure where they delivered tiny radioactive glass beads to an artery in the left lobe of his liver in an attempt to kill as many tumors along that artery as possible. We went through a full week of my husband being down and out from the procedure. Two weeks later, we were back for a CT scan. The contrast caused a severe allergic reaction and we ended up in a random ER on our way home; he was drugged up with five meds and hooked to bags of fluids in an attempt to get the contrast flushed out of his system as quickly as possible. We’ve waited for phone calls, waited for answers, waited for what’s next, waited to see who will help us coordinate all of this. Another Y90 is scheduled for the right lobe the day before Thanksgiving, and five days from now, we’re flying to Nashville for a consultation with the clinical trial we’re hoping to start AFTER the Y90 procedure. It’s a never-ending story, a story that has a million words, a million turns and not nearly enough time to explain the experience it truly is.

Cancer patients and caregivers will understand. Maybe they’re right? There are no words to describe cancer. On the other hand, there aren’t enough words to describe cancer. I could go on and on. Oh, I have plenty of words. Just give me enough time, enough space, and I will WOW you with how complicated this journey is.

In an effort to travel this path in a way that feels lighter and easier, I’m doing it my way, documenting it my way these past 17 months. When it comes to publishing anything for public consumption, I’m writing significantly less than I used to. But as stated earlier, I am committed to documenting THIS story. I’m sharing updates and significant insights as I feel specifically led to do so publicly, but more importantly, I’m documenting this story in journals. To give you an idea of how much I’ve written, how much there is to say about cancer, I’ve filled half a journal in less than three months. In this space, I’m sharing the condensed version, the watered-down, big-picture cancer story. The truest story is tucked away, hand-written, unedited, unfiltered in real-time ink.

I never quite understood why so many people who experienced cancer got book contracts. I mean, what’s so special about cancer that it automatically necessitates a book being published? Well, let me tell you. I have conceived several books (none of them birthed yet), but this journey is most definitely a BOOK. Anyone who has gone through cancer, particularly rare and metastatic cancers like my husband’s, will tell you that there is absolutely NO way to adequately describe the true cancer experience unless you write a full on BOOK. So I am writing. For a while now – in fact, this whole metastatic experience – I have been writing in journals. Nobody knows the real story from my spouse and caregiver perspective except me and God. There are simply TOO many words to describe cancer. It’s not possible without a book. So today, I declare that I am writing this real and very true story. Not for public consumption, but for my own health and well being now, and for some unknown somebodies in the future. Whether it be our children and grandchildren, or organized later into a book that’s released into the universe, I do not know. But I AM writing it.

Between now and then, you need to know that cancer not only affects you medically, but affects you physically, mentally, emotionally, spiritually, professionally, financially, relationally, socially, personally, and any other “ally” you can think of. If you’ve gone through cancer and disagree, then jump for joy; you’ve come through it a lot less war-torn than me. If you are hippy skippy everything is okay because we’re going to heaven anyway, then praise the Lord; your faith is steadier than mine. Even Jesus cried out “My God, why have you forsaken me” before his crucifixion. As for me, I will not tell you this is easy. I will not tell you this is just beautiful or just terrible. I will tell you it is ALL of these things rolled into one, all-consuming beautiful AND all-consuming terrible.

He is chronically tired, doesn’t sleep well, nauseous even with anti-nausea meds, sweats easily, gets full easily and doesn’t have nearly the appetite he did three months ago. But then there are days like yesterday, where we are out and about doing life as normal, and he makes it through with little complaint and little impact, and we are grateful for normal. I wax and wane with my energy levels, sleep is unpredictable, and I’ve gained weight I’ve had a tough time losing. But we work with our bodies and are beginning to understand our limits. He sleeps more, takes the maximum dosage of anti-nausea meds and has tried alternative treatments as well. He eats what he can and stops when he’s full. It’s okay. He wanted to lose weight anyway! I let myself fall asleep on the couch while watching the Food Network Thanksgiving Cookoff if I need to, and I’m working out when I can, not beating myself up when I can’t.

He’s still sharp as a tack mentally. Cancer’s not taking this man down! But I’ve had a bear of a time keeping thoughts of cancer blocked out for any significant amount of time. It’s nearly impossible to stop thinking about cancer, and family support group has taught me I’m not alone in that. I put so much mental effort towards doing everything I can to help my husband achieve as positive outcomes as possible that I start questioning my capacity to contribute anything else good to society. But then someone applauds me for doing what I’m doing, and reminds me that not everyone could research and advocate for their loved one the way I’ve researched and advocated for mine. And it reminds me that my mind is sound. Yes, indeed, sound.

I’ve said it before, and I’ll say it again. My husband has a supernatural power of positivity. Emotionally, he’s been a solid rock through this whole thing. I’ve literally only seen him break down four times this whole 17-month journey through metastatic uveal melanoma. That, in case you were wondering, is MIRACULOUS considering everything we’ve been through. But he has been wearing down a bit in recent months. It’s the physical stuff that’s taken a very slow wear on his emotions. His zip isn’t quite like it used to be. He’s not nearly as excited and energetic when he comes home from work at night. The signs are there. It’s taking a toll, but he is STILL Superman. As for me, the emotion comes in waves. Typically, I’m much stronger, much more resilient than I expect myself to be. I think I should cry more than I do. But the emotion comes in waves. It comes, washes over me without warning. There it is. Yes, we must address these emotions emerging from such trauma. Yes, this is trauma. It’s okay to cry. It’s okay to feel numb. It’s okay to feel all of it.

Spiritually? Well, WOW. This surprisingly isn’t a conversation my husband and I have had a lot since his newest diagnosis 17 months ago. He is secure in his faith, secure he will enter heaven’s gates when God calls him home. His faith doesn’t waiver, at least it seems on the surface. I, on the other hand, don’t even know where to start. I thought my faith was oh so secure, oh so rich, oh so full. Now, I am seeing God, Jesus, the Holy Spirit in completely new ways, and I am thinking I knew nothing before this, and am only beginning to see the real trinity. I have lots of questions, questions that won’t be answered in a single post, better left between me and God, better kept for book form because these aren’t easy questions, I tell you. I surrender to God’s sovereignty. I read scripture regularly, but don’t pray enough because my prevailing belief is that he’s in control of all the final outcomes anyway. I know I should pray more. I pray short prayers, brutally honest prayers. He speaks to me in dreams, in nature, through music and people. He brings to mind bits and pieces of key scripture, revealing His intimate nature and wishes for me to press on in faith, even when it’s difficult.

My husband keeps working, maintaining a 40+ hour work week and business travel while undergoing cancer treatments, breaking only when he has to. Work and cancer consume most of his energy. I press on with photography, the most promising, immediate money-making element of this creative endeavor I’ve undertaken the past 5 years. Photography sends me into a state of flow, energizes me, and allows me to be creative while helping me forget about everything else. Writing and editing for public consumption is an unpaid luxury I rarely have time for right now. And I pick up ALL the other pieces that keep a family moving – household, finances, errands, three kid stuff, the list goes on and on. I have lots of questions about work, for both me and my husband, but I am trusting we are going to make the best God-led decisions for our family each step of the way.

Work, is of course, related to finances. And cancer, is of course, related to finances. We worry about finances, as does every family, and I watch as the medical account goes down, little by little, knowing we don’t have an end in sight. But thanks to the generosity and kindness of others, we have been blessed with everything we need so far, we can tap into stocks and even retirement savings if necessary, and I’m not afraid to ask for more help when I need it. We do our best to minimize unnecessary spending, but we’re not going to stop living life because of cancer.

Relationally, we’re a mixed bag, only this bag seems a little more mixed than the rest. As a couple, it would be ideal if we could spend more time together, just the two of us. But the reality is, all of our time together is spent 1) doing cancer stuff, 2) sleeping or 3) having family time together which is difficult with two out of three children being teenagers. Our last non-cancer date was five months ago for our anniversary. Honestly, it’s okay. We’ve been together 24 years, married for 21. The foundation of our marriage was built long ago. After cancer management, the most important thing is our family. I don’t know if we’re doing this right, but once again, family support group has shown me that nobody who’s experiencing cancer with a young family knows if they’re doing it right. We try our best. We work HARD, I’m telling you HARD, to find family time for normal things like meals around our table, a meal out on the weekends, one-on-one outings with kid + dad as he feels up to it, and a special family activity here and there as my husband feels well enough AND we’re able to pull everyone together for any significant amount of time. It is not nearly as easy as it should be. That bothers me. I am continually working on family time these days, yet I am beyond grateful for our support system of family and friends near and far. Circumstances have been less than ideal, but the fact that we’ve made such an intricate and beautiful community in a state we’ve only lived in for 2 years has been nothing short of a miracle. The meals, child care and love we’ve been given have been absolutely astounding. The way we’ve been cared for and looked after has been noteworthy beyond belief. The daily and special events we’ve been invited to and participated in have been life giving, keeping our minds off hard, uncertain things.

I won’t speak for my husband as to how he’d sum up this cancer experience. That’s his business. As for me as wife, caregiver and mother of our three children, I feel like I’m flailing to keep life feeling as normal as possible. Sometimes life feels normal, but more often than not, it doesn’t feel normal at all. I love normal moments when I forget about cancer and do whatever brings peace and joy – moments when I have fun, moments when I experience awesome conversation and perfect community, moments when everything flows in the garden, when I’m behind the camera, when I’m running to rap music, when I’m hanging with a stellar group of moms and kids on the playground after school. But cancer is waiting in the background, consuming our life, demanding my attention once again. There aren’t enough words to describe cancer. But I’ll try.

Thanks for listening. Thanks for loving us. Thanks for understanding.