There Aren’t Enough Words to Describe 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.

  1. Nicole says:

    Prayers continue!  Thanks for sharing your journey.  In your writings, may you be filled with a sense of relief in the process of getting it all out, and may others find familiarity or appreciation for the ups and downs of their lives as well.

  2. Tricia Martin says:

    Amy, blessings to your family. Thank you for sharing and giving me an insight of living with cancer.

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