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This year I turned 44. It’s been 34 years since I received my first camera; 32 years since I wrote in my first diary; 20 years since I completed graduate school; 17 years since I started dreaming of becoming an author; 8 years since I launched my website; 6 years since I bought my dream camera; 5 years since I left my career to pursue writing and photography; 5 years since my husband’s eye cancer diagnosis; 2 years 6 months since we moved across the country; 2 years since my husband’s eye cancer metastasized to his liver; 6 months since it metastasized to his abdomen, rib bones, spine, and lymph nodes; 4 months since my husband passed away; and nearly 3 weeks since I published my first book, The Apple of My Eye.

Phew!

So where do we go from here?

That is the question I am going to answer for you, faithful readers and clients. That is the question I am going to answer for myself.

First off, I would like to say that this isn’t a post for EVERYONE. It’s a post for ANYONE who has been a part of my journey as a writer or photographer, for anyone who has followed my creative endeavors a bit, but has never really understood what it’s all about. Whether you’ve read one of my posts or all of my posts, you might want to read this. Whether you’ve ordered my book, have it on your nightstand, or finished it in two days, you might want to read this. Whether you’ve done one photo shoot with me or three, you might want to read this. If you’re among the one or two handfuls of people I’ve trusted my deepest dreams and darkest fears with, you will want to read this. If you’re someone who knows me personally and have been following, but really don’t understand what the journey’s all about, I invite you to read this post and hopefully it will clarify things a bit. This post isn’t about inspiring you. This post is about INFORMING you. Here’s where we’ve been. Here’s where we are. Here’s where we’re going. Let’s do this.

WRITING

I’ve been publishing written articles on this site for eight years now. As many of you know, I just published my first book, The Apple of My Eye, three weeks ago. You can buy it on Amazon if you CLICK HERE. Many of you have asked if my husband, Seth, knew about the book and if I’d been working on it prior to his passing. The answer is YES and NO. Seth knew for 17 years that I wanted to become an author. We conversed and prayed for three years before I left my career to pursue writing and photography. He sacrificed his preference to have me working full-time so I could pursue these dreams. So YES, he most definitely knew about this. But he didn’t know I was going to publish my first book 3 1/2 months after he passed away, and I didn’t know I was going to do that either. That is, until his Celebration of Life service was indefinitely postponed due to COVID-19, and I realized I might have a big enough window of time to get a book published before we rescheduled. Hallelujah! It miraculously came together in the timeline I hoped for.

So where do we go from here? As you might have noticed, I’ve cut back significantly on publication of traditional blog posts the past two years. They are fulfilling, but time consuming to write and edit. While I would love to do it ALL, I simply can’t. I’ve decided to focus my energy on engaging with readers and clients on social media, and writing books which was my original goal 17 years ago and remains the goal when I get real about the writing legacy I would like to leave. I will continue to publish in-depth content here on the website once or twice a month. I will solicit guest posts from readers and writers once a month. And I will continue writing in short form on social media, largely Facebook, but will also be working to increase my presence on Instagram. Last, but not least, now that I have published my first book, I am a LOT LESS HESITANT to do so again. I have several more books in me and am already ready to start working on Book #2. The creative, INFJ, Enneagram 4 side of me wants to get right on it, because it’s ready to go in my mind and I’m pretty confident the time for Book #2 is sooner rather than later. But the practical side of me says I need to focus on Book #1, The Apple of My Eye, getting it out into the hands of the people where it belongs, and ensuring I’m at least breaking even with sales and royalties vs. expenditures. Once I get to the point where I’m breaking even (as far as I understand, this is also a critical point if you’re traditionally published), I will feel confident moving forward with writing Book #2. I’m hoping that could be as soon as September 2020.

How can you help when it comes writing? Follow me on Facebook and Instagram if you haven’t already. Read posts when they come through your feed. “Like” my posts when you enjoy them. Comment as you feel led! This will help get content into the hands of others who need it and are not familiar with my writing. Read when I share a link to something I’ve written on this site and take a risk and share your story if I’m looking for contributors. And last, but not least, buy my new book, The Apple of My Eye, leave a review on Amazon, and share it with others who might benefit from a book about cancer, caregiving, grief, death, becoming a widow, or coming alongside someone going through something tragic in life. The more this book gets out there and the better it sells, the more likely I’ll be able to publish more books for you all.

PHOTOGRAPHY

Right now, I’m in a good place with photography. I was shut down for 3 1/2 months due to COVID restrictions on professional photography, but am now back up and running. I have already done three photo shoots this season, which doesn’t sound like much, but is pretty good considering things just opened up recently, my husband passed away four months ago, we just had his Celebration of Life service, AND I published a book during this time! I took a serious look at my pricing structure this spring, as I am now the sole income provider for our family. As you will note, my prices have increased, BUT I need you to know that my pricing is still less than most of my local competition, I have underpriced myself for quite some time considering how much time I spend culling and editing each photo collection, and I have worked hard to offer packages that meet the needs of everyone.

So where do we go from here? There are so many uncertainties with COVID-19, but this summer and fall of 2020, I will be focusing first and foremost on senior photo shoots as my primary goal, with family photos as a second priority. Based on five years of professional photography, it seems my specialities are becoming families and seniors, but I still do headshots, am interested in engagement, maternity photos, and lifestyle newborn shoots, and would be open to low-key weddings if life led me that way.

How can you help when it comes to photography? Follow me on Facebook and Instagram. I regularly share my favorite photos from shoots on Facebook, but as with my writing, I will be working to increase my presence on Instagram in the months to come. If you need photos of your Class of 2021 Senior, let’s get a shoot set up! I will be running various sales throughout the summer and early fall. If you need updated family photos, please contact me. If you hear of someone looking for a photographer, please feel free to share my name and contact info. Word of mouth is HUGE for photography and has been my biggest source of clients to date. Now and moving into the years to come, photography will be my LIFE BLOOD as far as INCOME for our family, so the more referrals I get, the better. The more clients that turn into return clients, the better! I LOVE being your family photographer and I love all the connections that can be made through word of mouth. (If I’m NOT for you, that’s okay. No guilt! But maybe I’m the right photographer for someone you know?!) Photography gives me life and makes me happy. I’ve done the leg work to forecast best business for this photography endeavor, so I know it’s POSSIBLE to make the income I need IF I work hard to earn your business and your trust. If not, I’ll press on anyway and supplement my income elsewhere as needed. Because this is what I love.

RETREATS

Some of you might have noticed that I’ve mentioned retreats here and there. I’ve been dreaming of hosting retreats for several years now, but kept this largely between me and my husband. Now that he’s passed, there’s nothing but me and that dream. So I’ve started becoming a little more open with the concept. This is still a far-off dream, especially with COVID-19 and all the unknowns about how long it will be before we can resume life as “normal.” But I believe my dream of hosting retreats is possible. In fact, God has gone ahead of me and is preparing a way to make them happen. I recently had someone reach out asking if I might consider helping her with something someday; the request was very much in line with one of my long-term visions for retreats. Now it must be said that I’m not anywhere close to being able to actually HELP her execute that task, but the fact that someone reached out to me requesting help – completely out of nowhere – is confirmation I am on the right track.

So where do we go from here? At this point, my dream of hosting retreats is just that, a dream. I’ve learned how to manage dreams and determine what’s feasible in real life. I’ve learned what to bring to God and what to surrender. I’ve learned to discern when it’s time to move forward with a dream and when I need to keep waiting. So I have the tools I need. I just need time. Time to reestablish myself and our family’s income with photography, writing, and supplemental sources as needed. Once that and COVID have been sufficiently managed, I will know when it’s time to move on this dream of hosting retreats. In the meantime, I will keep dreaming and refining what those retreats look like.

How can you help when it comes to retreats? Keep following me. Keep believing in me. Keep encouraging me, engaging with me, and praying for me. And most importantly, keep supporting my writing and photography endeavors, as success with those will ultimately allow me to move forward with retreats someday. Right now, I see three potential groups for retreats: women, writers, and terminal patients and their significant others. Perhaps you’ll pray for discernment and clarity for it all?

I have established Your Story Studio as a means for accomplishing these creative endeavors – publishing books, continuing to establish myself as a professional photographer, and hosting retreats. Someday it will all come together and the vision will be complete. I thank you for reading my words, for trusting me with your photographs, and for believing in dreams yet to come. God bless each one of you. May your story come more fully alive as we journey together through this crazy thing called life.

 

Today, it’s my pleasure to welcome Lori Sanders who’s sharing a guest post about managing anxiety during the coronavirus crisis. Lori is a licensed speech-language pathologist (like me), and she is also a writer and hope*writer (like me)! Lori just released her first book, Unstuck, which “help[s] you identify what it is keeping you from the life you want” and “discover how to unlock yourself and be free to pursue what sets your soul on fire.” Thank you, Lori, for sharing your wisdom with us.
 
More than 20 years ago, I began my ordeal with anxiety. Over the years, I learned to recognize and manage it. I had almost forgotten about this unwelcomed acquaintance until the Coronavirus began to sweep across the globe.

It’s hard to describe anxiety to someone who has never experienced it. The best way for me to explain it is by likening it to the Dementors from Harry Potter. If you are not familiar, Google it, it’s terrifying.

In Harry Potter and the Prisoner of Askaban, Dementors are described as, “among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them…Get too near a Dementor and every good feeling, every happy memory will be sucked out of you.”

Anxiety does just that; it drains you of peace, hope, and happiness and sucks good feelings and happy memories from you, and it can consume you if you let it.

As cases of COVID-19 began increasing, I became obsessed with news feeds and numbers. All the input severely affected my mood, which was quickly becoming unpredictable. Then, I started having dreams about people coughing on me, and hospitals and death. One night, I woke up with a racing heart, and then another night woke up thinking I was having a stroke. I quickly recognized it was anxiety sneaking in, stealing my sleep, stealing my peace, waiting for my thoughts to spiral down that dark path where it had led me before. However, this time, I knew I could coax it back to whatever hell it came from, but it would take some time. I got up and began to pray. I listened to my favorite songs and even watched some comedians on YouTube. By focusing on brighter things, my mind was no longer held captive by thoughts of disease, sickness, and all the “What ifs,” and I was eventually able to get some sleep.

It became essential to decrease my time on news feeds and social media and increase time connecting with friends and family and being outside. I also took on some small projects, like putting up a house and feeder for the birds and some larger ones like launching my first book, interestingly enough, called Unstuck. I found these activities, along with many prayers, allowed me to be distracted, which helped keep my emotions and mood balanced.

In Matthew 6:25-27, Jesus tells us not to worry and says this, “Look at the birds of the air; they do not sow or reap and store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you, by worrying, add a single hour to your life?”

After reading this, I began to find great comfort listening to the birds outside my window during quiet mornings in prayer. I settled into a new routine, and for several weeks I was feeling good. I was feeling happy.

As restrictions began being lifted, I was excited as I was growing weary of the isolation and trying to be a mother, teacher, and friend to my child all day while my husband was at work. However, this next stage also brought back the fear of me or my family contracting COVID-19. We ventured out to a few places and began to visit family members. It felt so good to be out and about, see friends and family and support my local community’s small businesses (even if I had to wear a mask), but every time I came home, I wondered, “Did I do the right thing?”

I started watching the news again and checking the numbers, feeding my fear and low and behold; there it was, anxiety. I pictured it sitting there with a grin, saying, “I’m back!” Even as I write this, I continue to struggle as it tries to draw me in and wrap me in its dark cloak. Although it might sit here taunting me, I am confident I won’t let it win.

Philippians 4:6-8 tells us not to be anxious about anything. It tells us to give thanks, pray, and focus our thoughts on good things. It tells us the peace of God is far greater than we can imagine and his peace will guard our hearts and our minds.

I am not in control of who this virus infects or when we will be able to gather and hug our friends and family again, but I am in control of whether or not I let fear of the unknown steal my joy. When I feel it creeping in, I go back to the things I know will keep me from spiraling: prayer, people, music, laughter, writing, and nature — all the good things.

Lori Sanders is an author and speaker who finds joy in simple living. After decades spent as a speech pathologist, she decided to revisit and follow her dreams and passions of writing, photography, and helping others. Lori resides in East Texas with her husband and son. You can connect with her at www.lorisanders.com

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please seek the advice of your physician or other qualified health providers with questions you have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here.

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.

  1. Marie says:

    My husband was diagnosed with Uveal Melanoma just on January 30th.  The fear is so real.  Prayers for you and your husband.

  2. Maria says:

    Hugs and prayers.

  3. Stacy Westerlund says:

    People need to talk about palliative care more; it is very misunderstood. You said it perfectly, “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.”

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