Posts Tagged ‘young adult cancer’

29
Sep
2016

The Struggle is Real (Really)

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Sometimes hope is hard to find. Smiles aren’t always easy to come by. Happiness is fleeting. Sometimes even the best intentions are squashed. Days envelop in worry, fear, and regret. Nights end in tears. Thoughts can trick you, emotions can be your worst enemy. Optimism can be an elusive ghost. Sometimes dark clouds roll in, bringing thunderous roars and floods that rain on your parade. Choosing joy can be an exhausting and tumultuous battle. Sometimes the “whys” and “what ifs” outweigh understanding. Sometimes purpose eludes us.

A few weeks ago, I found myself crumpled on the floor heaving burdened sobs into the quietness of our closet. This particular Saturday started as many weekends often do, full of possibilities, adventure… and laundry. The sun was out (per usual for a Texas summer) and the birds might as well have been chirping if they weren’t so dang hot. My husband and I had regained the glorious sleep that our work weeks stole from us and we faced no agenda, no errands, and no stress. I knew it was going to be a great day. I just knew it.

Yet somehow, no matter my intentions of enjoying this beautiful Saturday, something overcame me. My tone became rude, my words short, and I could feel a temper flaring up. Like a dragon from within, I snapped at Matt. Snipping and snapping at… nothing. My meaningless and unjustifiable frustrations bellowed. I can only imagine what he thought as I continued on my whining streak. Soon, I even began wondering what the big fuss was about. Why was I upset? What’s going on? Not long thereafter, as it always does, the real reason burst forth.

“CANCER HURT ME! IT TORE MY LIFE APART. I HATE WHAT IT HAS DONE TO ME. TO MY BODY. TO MY THOUGHTS. TO MY FUTURE. TO OUR LIFE.”

Each word sharp, searing truth. I meant them, and I still do. I hate what has happened because of cancer. This isn’t the life that I wanted. This isn’t my fairytale. I’d be lying to say that joy and hope and faith and happiness is boundless and everlasting.

You often don’t see my journey to hope and joy. You read only the wisdom that I glean from the trenches of my grief. You hear the thoughts after they’ve been processed, the pain after it’s started to heal, and the loss that has already found hope. I must let you in on a little secret, though. Sometimes finding hope is downright miserable, and sometimes impossible. My life isn’t as triumphant and victorious as some may think. I struggle. Often, quietly, I wrestle with the realities of what I now face on the other side of cancer. Not yet 30 and menopausal. A body that no longer feels like my own. Barren, infertile, and childless. Broken and scarred. Deeply wounded and downright sad.

I hate pity parties, but sometimes we just need to be the “hostest with the mostest.” I try my hardest to trudge through, to find hope and hold onto it. I try to reach for gratitude for I know it has the ability to overcome anguish, but sometimes I fail. And it’s not fair for me to only show you the finish line. Understanding what it takes to get there is where community, empathy, and growth happens. I can’t let you think that where you’re at is uncommon. If you’re depressed and forlorn, you’re not alone.

The truth is, I miss my life before cancer. The wounds are so fresh that I still cry at the thought of what once was. A blissful, yet naive marriage. Grandiose dreams that really felt attainable. The world, our life — a fresh palette of the most vibrant colors ready to be whimsically painted onto a clean canvas.

I wish cancer didn’t pick me, though I’m grateful for the gifts that came with it. I wish God didn’t choose me, yet I know my calling was found in this chaos. I was supposed to live with the security and assumption that my life would be long. We were supposed to live out our dreams. After marriage, I was supposed to get pregnant. We were supposed to land those dream jobs and have the ability to buy our dream home. Our savings account would grow to thousands, not diminish to pennies. I’m mad that it didn’t go that way. I’m hurt, and angry, and disappointed.

I don’t want cancer. I never wanted cancer. I wish it was different, somehow. To be honest, there are moments when I wonder if any of this was worth fighting so hard for. The scars, the infertility, the remnants of emotional and physical pain, the grief. But would I really change it? No. I’d fight for it all again, because life is worth living, no matter how painful it may be. It’s only with eyes towards Heaven that I can grasp a minuscule understanding of my life here on earth.

You see, God often deposits resounding truths in my trenches. He allows me to feel the depths of despair with tear-stained cheeks and profound sorrow in order to see with greater understanding and empathy. Into the dark places, I feel the weight of it all. The gut-wrenching pain of tremendous loss. The burden of shattered dreams. It’s in the trenches where I find hope. Hope is not found when life is beautiful and grand, but when there is nothing left to hold onto. We must sit in the dark, quiet, muck of the trenches in order to discover the light.

Psalm 34:18 (ESV)

The Lord is near to the brokenhearted
and saves the crushed in spirit.

14
Sep
2016

Moving Forward Regardless

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Looking down at the file in hand, he reads aloud, “It looks like the report says that there’s an eight millimeter spot on the bottom of your right lung.”

Silence. Though there are four of us in the room, nothing can be heard but the crinkling of the paper on the blue examination chair as I shift my weight. Suddenly the room grows smaller.

“We’ll need to send this over to our imaging team so they can explain further. Sometimes different technicians read results differently than others,” my doctor shares, noticeably attempting to maintain positivity.

My words are trapped. I desperately cling to hope, but with each breath it’s dwindling. Thoughts racing, I can’t seem to organize a simple sentence. The news hits me so violently, my breathing becomes labored. The wind is knocked out of me and I’m struggling to make sense of the force behind this reality.

All of a sudden, the questions begin to flood my mind. Each one determined to be asked first. They claw their way to the forefront of my brain, spilling out in jumbled words as my mouth involuntarily opens. “What does that mean? Is it cancer? It’s not cancer, right? How big is eight millimeters? You said it’s on my left lung or my right lung? On the bottom? Are you sure? But all of my scans for the last 26 months have been clear. How can this be?”

With more grace than I could ever muster, he shares, “This report says it’s non-specific, so let’s try not to panic. Let’s stay positive. We’ll need a few minutes to pass this by our imaging team. They’ll be able to give us more details. Maybe the technician that wrote this report was mistaken.” The door closes as my doctor and his PA leave the room in search of answers.

It’s just my husband and I now. We look at each other in disbelief. Our eyes speak while our lips cannot. The furrow in my husband’s brow tells me that he is confused, scared, and in shock. My eyes jolt to every corner of the room, frantically seeking explanation. I look back at him in astonishment and defeat. What is happening? I’m convinced this must be a bad dream and that I’ll soon wake up to find relief. But it is not a bad dream. It’s real. And it is in fact happening. Soon, my strong, compassionate, empathetic guardian of a man encourages me as only he can. “We have to have hope that it’s nothing. The doctor says this spot could simply be an infection in your lung that your body is fighting off. He says this could happen to any of us. It could be nothing. It may not be cancer.” Oh how I love him each time he speaks hope over my fear. His words are a salve to the fresh wound of this news.

Confusion lingers between us as we wait for my doctor to return. I valiantly fight back tears as I quickly map out the what ifs. I have climbed to the top of the ladder of worst case scenarios and tell myself ultimately, if I die, it’s okay. I’m going to heaven. But Lord, please take care of my husband. I step down one rung and quietly think to myself that if it is cancer, I know how to fight it. And I’ll do whatever I have to. With each step down the ladder, I consciously choose hope above all else. My breathing slows. My fidgeting lessens. Calm is just around the corner. I’ve addressed the worst of the worst, and there’s no need to go there again. I bring myself back to the moment and take a deep breath. “Don’t worry about tomorrow, for tomorrow has it’s own worries.”

The door opens, and I’m standing now. Give it to me, Doc. I want the answer. I need to know. “Unfortunately we don’t know anything more. Our team confirms that there is a non-specific spot. It’s too small to even biopsy. I know you wanted answers. I wish I could give them to you. I’m so sorry. This isn’t how I thought this would go.” Me neither. Me neither. My mind rewound to the beginning of the day. We woke up early, before the sun. For hours, we drove to what we fully expected would be celebratory news. We tossed ideas back and forth about which restaurant we’d celebrate at after we learned the results. Yet, here we were, without those results, left with more questions than we had when we first arrived.

The rest of the appointment is a blur. I know I asked a million more questions, several of them rhetorical. I know we agreed to do a follow up PET scan in six to eight weeks to monitor this spot on my lung in order to see if it grows or becomes more visibly malignant or benign. According to my doctor, if this is an infection, it may resolve itself on its own and may not even appear on my follow-up scan. We can only hope. I know my doctor was patient as I asked what treatment would look like if the spot proved malignant. Consultations with a thoracic surgeon to see if the spot could be removed. Possible chemotherapy. “We just don’t know yet,” I remember him saying.

One of the most profound moments of the day has set the tone for these proceeding weeks as we wait for my upcoming scan, and proves the importance of proper bedside manner. As my appointment wrapped up, and the four of us turned for the door, I hugged my doctor. He whispered in my ear, and thinking of it brings me to tears just like it did in that very moment. “You are strong. You can do this.” Having a doctor who believes in and encourages you while understanding your fear and uncertainty is a game changer. Cancer is fought with a team. Strength builds with unity.

So here we are now. Two weeks out from learning that I have an unidentifiable spot on my lung, and less than four weeks away from my upcoming PET scan that will hopefully identify said spot. While it may not seem like it, there are many choices to be made when fighting this disease. Joy is a choice. Strength is a choice. Peace is a choice. Hope is a choice. Faith is a choice. When facing cancer, these choices are excruciatingly difficult at times, and they can also be fleeting. In the car on the way home, through tears, my husband and I decided that we would choose hope. We would fight back the fear and doubt, and focus instead on our faith. We would try not to waste our energy on worrying, because worrying is a quick ticket to stolen joy.

If this spot is not cancer, we move forward. If this spot is cancer, we move forward. We will move forward regardless of the outcome. We are called to be courageous in the face of death. We are called to be brave in the presence of fear. We are called to walk firmly in faith when doubt tempts us. We are called to choose joy above all else. And with each day that passes, we move forward with our choices made.

Matthew 6:34 (MSG)

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”

PC: K Mitiska Photography

31
Aug
2016

Cancer: A Family Affair (Part 5 – Conclusion)

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Written by Matt, Stephanie’s husband, guardian, and steadfast calm in her biggest storm.

When I first heard that Stephanie had cancer, it wasn’t through Facebook. It wasn’t through word of mouth or even a phone call. I learned the news at the same time she did, because I was by her side, sitting in the chair next to hers at the doctor’s office. I was there.

Hearing the news made my stomach drop to the floor. Instantly, I became aware of a shortness of breath. I can only compare it to getting hit incredibly hard. You don’t feel pain at first, but you know it’s coming, and you know it’s really going to suck. Talking to the doctor, getting connected with oncologists and radiologists and getting meetings set up was the initial, “let’s deal with this” shock.

Then we got back to the car. That’s when the wave of pain hit.

Was this real life? Did that just happen? My mom had just died four months earlier, was my wife going to die next? Then what happens to me? I never told Stephanie at the time, but in my head I immediately went to the worst-case scenario. I went there once, and never went back. From then on, we had to live in the reality of the moment, but also make positive strides each day. So onward was the course. Even if you’re baby-stepping, make sure you baby-step forward.

Cancer is a literal hurricane that rips through every aspect of what your life was. Whatever plans we had for the future we had to let go of. We had to stay low to the ground and choose to not let it sweep us away. While shattered pieces of our dreams of having kids and buying a house swirled around us, cancer wouldn’t take us. Stay low to the ground and move forward, but find shelter.

The good news is that we did have a storm shelter, so to speak. It’s God. It’s still God. It’ll never stop being God. He’s our refuge. Get there, stay there. We found comfort in knowing Jesus as our Savior, and knowing that He was protecting us the whole time. We knew He wasn’t done with us, and that He’d use this situation for good. When people think of Jesus, they may think of someone who lived a long time ago and preached love and peace, laughing with children and holding lambs from time to time. That He was perfect. So perfect in fact that some don’t think He was ever real at all.

But people don’t see the whole picture. Jesus didn’t hide emotions. He cried over losing those He cared about. And He got angry, flipping over tables and yelling at people. While still God, He was also human and felt what we feel. And few see Jesus as the warrior He is and will come back as. The whole good vs. evil thing that plagues our world — He is the good. He was and continues to be our good. I shake my head and am brought to tears when I think of what would have happened if we didn’t know Him through the entirety of our journey through cancer. There’s a chance we’d be divorced. Steph could be dead. I could be dead.

Cancer sucks. But it galvanized our marriage. It gut-checked us. When we got married, we said vows to each other, but at the time never truly considered facing situations that would force us to “put up or shut up.” At diagnosis, we chose to “put up” and live out those vows. Because that’s what marriage is. It’s not surface-level rainbows and butterflies. It’s ugly and dirty and downright hard. But when you muck through the trenches with God as your anchor, the payoff is better than anything you could ever imagine. After all, we’re now in Austin, five years after God put the promise in our hearts when cancer wasn’t even on the radar. We still have dreams of family and buying a house someday, but those dreams look different than they did before.

This journey has also taught me to live a bolder life. Frankly, I used to be the type to think that if things didn’t work out in my favor, and if they didn’t work out perfectly, they weren’t meant to be. In the past few months I’ve stepped out and done things that the old Matt would call me absolutely insane for doing. But I’m glad I’m doing them, and I’m in a far better spot because of it. Swing hard, and swing for the fences. No one comes to the plate hoping to hit a weak grounder back to the pitcher. Taking chances and falling on your face is a guarantee, so you might as well make the falls worth it. Take big chances and bet on yourself.

Finally, invest in people. Take the good that life gives you, be the good you want to see, and do good for others. Take good, be good, do good. There’s nothing to be gained in the pursuit of vanity. “The good stuff” is in people, not things. Life isn’t a guarantee, and days don’t repeat themselves. January 25, 2012 happened once. August 31, 2016 happens once. Life ebbs and flows and is as unpredictable as the forecast of a Colorado weatherman. At the end of the day, what matters isn’t your status, intelligence, or bank account. It’s people. Growing old together may not be a guarantee, but the effect you have on others is. Make your life count for good.

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John 1:5 (ESV)

“The light shines in the darkness, and the darkness has not overcome it.”

25
Aug
2016

Cancer: A Family Affair (Part 4)

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Written by Todd, Stephanie’s youngest brother who was 21 at the time she was diagnosed.

Occasionally after receiving a bill in the mail, I set it down on the counter, tell myself I’ll take care of it in a few hours, and forget about it for weeks, sometimes even months. When the sight of the bill on the counter triggers my thinking about paying it, I’ll sometimes push the thought further back into my mind, only for it to reappear when the next bill arrives. This bad habit of mine – described in psychological lingo as avoidance coping – was the strategy I first used to cope with Stephanie’s cancer diagnosis and treatment. For months, I refused to seriously think about her battle, because doing so led to painful thoughts.

I remember well the day in January, 2012, when Stephanie called me and told me that she had just received a cancer diagnosis. Sitting in the passenger seat of my wife’s car, I thought to myself that the diagnosis couldn’t be too bad. Sure, cancer is serious, I told my wife, Amy. And a hysterectomy is also serious business. But I was sure that 25-year-olds couldn’t die from it. And so when Amy and I flew out for my sister’s surgery a week or two later, I was saddened by the invasive surgery Stephanie had to undergo, but also comforted by the thought that it would act as a magic bullet. That thought was enough for me to look down on my sister in her hospital bed post-surgery and think that, while this was a massive bump in the road in her and her husband’s life, it wasn’t a tragedy. Life for them would return to normal in a matter of months, I remember thinking.

That all changed when Stephanie’s prognosis came back shortly after her surgery. The gravity of that prognosis hit me when I realized that I would have a better statistical chance of more than quadrupling my measly college savings at a roulette table than my sister would of living another year. So what did I do with that tragic information? Stuck my head shoulder-deep into the sand. For someone who had taken that approach for years, it wasn’t too hard to do. I was in college, nearing graduation, and working hard to prepare myself for law school. And so instead of continuing to talk to her on the phone almost everyday as I had done for the previous few years, over the next few months I only called a few times. A “hey, how is chemo going,” here and there. To me, this was the best way of dealing with the situation – pretending it didn’t exist. Coping with her prognosis was like my approach to the bills in the mail I periodically receive: if I pretend they don’t exist, they don’t, at least for a while.

That approach didn’t hold up when I first saw my sister bald in person. She was in Oklahoma for my college graduation, and seeing her was like being hit with a ton of bricks. I couldn’t evade the issue any longer, and so I directly confronted her prognosis for the first time. Before walking out on stage at my college graduation ceremony to receive my diploma, I shaved my head to honor her fight with cancer. Walking across that stage and removing my cap was, and will likely continue to be, my proudest achievement.

After a recurrence of my avoidance strategy came back when I moved to Washington, DC a few months later – I refused to read her website to avoid the fear of her dying – I finally put that strategy to rest. I realized that, were Stephanie to die, I would regret not spending as much time talking with her as I possibly could. That basic thought was profound, and it influenced not only my relationship with Stephanie but with my other family members as well. I began to talk with her, my brother, and my parents much more, coming to realize the benefit of confronting her prognosis head on.

Stephanie’s fight with, and now defeat of, cancer has been defined by her courage, bravery, and wisdom much beyond her years. I am incredibly proud that she has influenced so many. Her battle, though incredibly tough over the years, has provided me with an opportunity to learn what life is all about.

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Psalm 90:12 (ESV)

“So teach us to number our days that we may get a heart of wisdom.”

18
Aug
2016

Cancer: A Family Affair (Part 3)

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Written by Denise, Stephanie’s mother.

Some moments are caught in your heart and mind for the rest of your life. Most of them bring you great joy, and you recall them from time to time, like the day you gave birth to your very special first child or the evening that child married the love of her life. I remember both of those occasions with a clarity nearly as exact as a video recording. Even now, I smile at the memories!

Other moments, though, remain with you for far different reasons. I remember waiting for a phone call from Stephanie, that very special first child, with news about the doctor appointment we had been anticipating. After nearly a year of struggling with troubling symptoms that multiple doctors had been unable to diagnose, she had finally received some answers. My stomach sunk when she told me that she and Matt, my extraordinary son-in-law, would meet me at home to talk. This can’t be good, I thought, or she would have just bubbled over with joy and relief on the phone.

“It’s cancer, Mom.” Seared in my memory. These three words were the start of an arduous journey for all of us that would be characterized at different times by fear, uncertainty, and hope. Stephanie was diagnosed with cancer and would have to undergo a radical hysterectomy. At age 25. I spent part of that first night challenging God. I cried and pummeled my pillow, reminding Him that I had already carried three children and wondering why he would take this blessing away from my daughter. It didn’t seem fair. I begged Him to transfer the cancer to me, so that I could somehow rescue her from the grueling radiation and chemotherapy that were in her future. But that was not God’s plan. A few days later, we realized just how deadly her diagnosis was.

“This is really bad, Mom,” the oncologist said with tears in her eyes. She hugged me and said it again. “This is just really, really bad.” Another moment seared in my memory. Pathology from the hysterectomy indicated a different diagnosis than the original. Stephanie was battling an extremely rare and aggressive carcinoma for which there was some hope, but not very much. “Start getting things in order. She probably has only nine months.” Was this really happening? It was, and the grief was almost unbearable.

If you’ve read Stephanie’s blog, you know that she courageously underwent 28 radiation treatments and four different six-month chemo regimens because the cancer returned three times after the original tumor was removed. To say that the journey was difficult or challenging would be the biggest understatement of all time. I could go on and on about what it’s like to be the mother of an adult daughter battling a serious illness. It changes your relationship, that’s for sure, because you want to fix the booboo, just like you did when she was a toddler. Except now she’s a married woman. And you can’t fix things. And it’s awful.

Everyone says that struggles can teach you profound lessons, if you let them, and it’s absolutely true. Here are some important things I have learned through the journey:

  • There is no handbook for how to be a good mom when tragedy strikes, so it’s important to create an effective support system. I needed someone I could cry with, someone who wouldn’t be threatened by my anger or fears, someone who could push me to stay present when I just wanted to disappear and make it all go away. My daughter surely didn’t need to take care of me emotionally because she was already in the fight of her life. And her brothers needed their mom to be strong. Having a very small and dependable group of friends who gave me the strength I needed to make it through the grueling days, weeks, months, and years of the journey was crucial for my mental, emotional, and physical health.
  • Everyone’s coping methods are different, and that’s okay. I’m a teacher and I love information. The more, the better. After the initial shock of it all, the very first thing I did after Stephanie’s diagnosis was spend hours reading everything I could get my hands on. Even though there was nothing positive about large cell neuroendocrine carcinoma of the cervix to be found, at least I knew what I was dealing with. In some strange way, that gave me a sense of control. But information doesn’t meet everyone’s needs. I learned to let the rest of my family cope in whatever way they chose, even if it wasn’t the same as mine and even if it meant I needed to keep details to myself.
  • Your adult child is much stronger than you ever knew. Stephanie was a headstrong and independent girl from the beginning, a lot like me, funny enough. However, the way she battled cancer revealed her true grit and character. She made the decision, early on, that she was going to handle her journey with as much grace and courage as she could possibly muster. And that’s exactly what she did. I remember the day Stephanie asked me if she was going to die. Through our tears, we talked through the possibility. That raw, authentic sort of conversation only happens when the one on the front lines is strong and courageous. My daughter is the strongest and most courageous woman I know.
  • Struggles of any kind can refine everyone involved. Stephanie is not the same person today as she was the day before diagnosis. Neither is the rest of the family, including me, and I am so incredibly thankful because we are much better. We have learned how to love and celebrate each other more completely, how to make every moment count, how to give each other healthy space, and how to fully honor each other’s differences.

Stephanie is more than my daughter. She’s my true friend and my courageous hero. Our relationship is stronger and richer today, and we are on the road of life together, through thick and thin, as two adult women. I am so grateful for the memories we’ve made and those yet to come. Truly, all things work together for the good of those who love Him and are called according to His purpose!

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Romans 8:26-28 (MSG)

“Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.”

11
Aug
2016

Cancer: A Family Affair (Part 2)

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Written by Matt, Stephanie’s oldest younger brother who was 23 at the time she was diagnosed with stage three, aggressive cancer.

Even though it’s been nearly five years since Stephanie was diagnosed, there are certain moments and emotions etched in my memory forever. For as long as I can remember, Stephanie has been one of my closest friends. I call her nearly every day and have for as long as I can remember. I cherish the bond I have with her. When she called me with the earth-shattering news that she may not live much longer, I didn’t know what to do.

I am going to be brutally honest. Writing this post has been incredibly difficult.  I actually love to write, in fact it’s one of my favorite ways to process and reflect. I journal nearly every day, and blog on my own quite often. When Stephanie asked me to contribute to this family series, I secretly didn’t want to. It is still painful and hard to reflect on.

In January 2012, I moved to Dallas, TX to start a consulting job. At this point, I was 23 and ready to make a name for myself in the business world. Coincidentally (or providentially… you decide), this is the same month when my dear sister called me and broke the news that she had been diagnosed with late-stage cancer. Typing this, I feel those painful emotions surfacing again.

“No. There is no way.”
“It can’t really be that bad.”
“No… what?”

How was I supposed to process that? I didn’t know what to say. I didn’t know what to feel. I could literally not comprehend what my sister was saying.

After I hung up the phone with Stephanie that chilly, January day, I called my mom. I needed her to clear it all up for me. I needed her to tell me that everything would be okay… that somehow Stephanie was exaggerating, or that she’d misheard the doctor. You know that feeling when you get bad news, where you kind of just go numb? You don’t really have any thoughts, and you can’t really feel anything. Do you know that feeling? That is exactly what happened as I talked to my mom.

In a surprisingly peaceful and collected voice, my mom proceeded to tell me about this wicked cancer called large-cell neuroendocrine cancer of the cervix, which she described as exceedingly rare and aggressive. She told me of the very low chance of survival among its victims, and that Stephanie was an unusually rare case. In fact, this cancer was actually so rare that there was no consensus on how to treat it.

On that phone call, something inside of me shut off. Whether consciously (or subconsciously), I decided I could not deal with the reality that my sister might die soon.

The next four years, my sister battled an endless amount of surgeries, and chemotherapy and radiation treatments. It’s difficult to think about (and impossible to perfectly empathize with) the things she went through. As much as I want to say I got through those following four years with faith that everything was going to work out, it just wouldn’t be the truth. Sure, yes, I did have some amount of peace that things would work out, although not once did I try to define what “work out” would mean. I did trust the Lord in this to some degree, but to be completely honest, more than my faith that God DID have this under control, the way I coped with this pain was by avoiding it. Anytime I would call my mom or sister and they would want to give me details about a recent treatment or current struggles, I would tell them I didn’t want to talk about it. I can’t paint this pretty picture of how I coped because the truth is, I never wanted to face the reality of what was happening.

My way of coping was to shield myself from facing what could have been the loss of my sister. In some way, in order to cope, I almost chose not to cope. I never allowed myself to face the real possibility that Stephanie would die, because that would have been too much for me to handle. Living so far away and working long hours at a new job was helpful in some way – I was able to block out all of the pain with the classic “out of sight, out of mind” coping mechanism. I think the psychological term is “coping by avoidance.”

As I’ve opened up with others in the middle of trauma or reflecting on past trauma, I’ve realized that I’m not the only one who has ever had a tough time addressing something hard like this. It’s ok to feel how you’re feeling. It doesn’t mean you don’t love them any less, or that you don’t pray for them, or that you don’t care for them with all of your heart. It doesn’t mean any of that. Grieving is difficult, and no way is the right way. I’m still not even ready to go all the way into that pain, but I’m grateful to God that I still have my sister.

My sister’s experience has taught me so much. I learned about what true HOPE means when Stephanie stayed positive through nauseating treatments and exhausting tests and transfusions and surgeries. I learned about STRENGTH when she kept diligently going to treatment and sharing her story with the world, carrying the weight of everyone’s concern on her shoulders as she set off to put the devil to rest with her faith. I learned about GRACE as my sister took all the bad news and made tough decisions with class and peace. Finally, I learned a little more about LIFE and how to live it.

Stephanie is brave and courageous and determined and strong and driven, and she is living a life worth being proud of. Life is hard. Who we are in life is determined by how we respond in times of adversity, and I am so thankful to have her in my life to show me what a life worth living looks like.

Matt Shaw and Steph

John 16:33 (ESV)

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

03
Aug
2016

Cancer: A Family Affair (Part 1)

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When I was diagnosed, we were all diagnosed. My husband. My family. My friends. Though I carried the weight of the disease, those who surrounded me were burdened by the gravity of the situation as well. Cancer doesn’t only affect the afflicted, it tears through the core of everyone around you.

I’ll never forget each phone call I made to those closest to me on January 25, 2012. I spent nearly six hours sharing the news with my brothers, step sisters, parents, grandparents, extended family, and friends. I’ll never forget how I felt with each person. Because of different personalities, everyone heard the news in a different way. With some, I was direct and to the point. Emotionless. Others heard my tears and sorrow. With some, I was careful and delicate. I even offered comfort to those who simply couldn’t believe what I was telling them. I heard anger. I heard sadness. I heard guilt. I heard shock. I heard prayers. I heard support. I heard it all.

My diagnosis didn’t just affect me. It affected everyone who loved me. And everyone who loved those who loved me. And everyone who loved those who loved those who loved me. Cancer isn’t an isolated circumstance. Its tendrils reach far and wide, touching the world. We’ve all been affected by cancer in some way, haven’t we?

Though I fought this disease four times, through years and years of a desperate battle, my husband was there for every single moment. Though I was the one who was sick and aching and dying, my husband was being wounded by the disease as well. What he witnessed still leaves gaping wounds in his soul and deep scars in his spirit. I cannot even begin to fathom how he felt when his bride was facing death. We only had six months of wedded bliss before malignancy marred our marriage. He’s carried my weak body out of bed. He’s clothed me. He’s bathed me. He’s fed me. My husband is my guardian. He’s stood at the gates between Heaven and Earth in protection of me.

Miles often separated my brothers and I, but I know that my diagnosis also deeply affected each of them in ways I may never know. You see, my brothers are my best friends. We share a bond that I’ve never witnessed between other siblings. I thank God for choosing them to be forever mine. My comrades. My cheerleaders. My protectors. My younger, but much bigger, brothers. We’ve been through life together. We share everything with one another. We speak multiple times a week (often every day), and have for the majority of our lives. So, when I got cancer, I know they probably felt like a part of them got cancer as well. They are caring, attentive, and the most incredible brothers I could have ever dreamed or wished to have.

Because I’m not yet a parent, to begin to describe what mine have endured would never grasp the scope of what their realities have looked like since my diagnosis. My mom always dreamt of throwing me an elaborate baby shower. Of sympathizing with me as my belly expanded and morning sickness ailed me. Many of her dreams were lost the day cancer barged into her daughter’s life. In typical Momma Bear fashion, she roared in anger and desperation in my affliction. She felt helpless, as her adult child — her firstborn and only daughter — was growing weaker and weaker.

My father. This wasn’t the first time cancer threatened to steal someone close to him. His mother passed away from the disease years ago. His mother, and potentially his only daughter. I can’t imagine. I’m a true daddy’s girl. He has always been strong and bold and able to quiet emotion. He is the umbrella on a rainy day, and the warm blanket in the cold. Yet, my cancer tore through him. He cried devastated tears. How does this make a father feel? I will never know.

When cancer affected me, it affected them. And I’m sure my diagnosis has even affected some of you as well. I shudder at how devastating this disease is. It’s a plague. A monster. A beast that swallows everyone in its path. Cancer touches us all in some way. Yet, I honestly can only know how my diagnosis has hurt me personally. I can’t see within my husband’s heart, and though I often wish I could, I surely cannot read his mind. No matter how close my brothers and I are, to try and understand how my diagnosis has impacted them would end in failure. Though I’ve known my mother and my father longer than I’ve known anyone else, I’ll never be able to grasp what they’ve endured when their only daughter got cancer.

Because I cannot imagine, understand, or fathom how my family has personally been affected since I was diagnosed, I’ve been inspired to invite them to share their stories with you and me. This month, I’m beginning a series that focuses on the family behind the patient. Each week, a family member of mine will open their hearts and share with us. They’ll explain how they felt, what they feared, and how their lives have forever been altered since my diagnosis. Please know, this requires much of them. Though I have the gift of sharing my life in words, not all of them do. My journey has been painful for them, and I’m honored at their willingness to open their wounds in this way. They may share everything, they may only share the surface, and some may not share at all. In fact, my father desperately wishes he could, yet his wounds are still too raw to be opened. Someday he may, but the time isn’t just yet.

I encourage you to follow along as you and I both get an inside look at how cancer affects more than just me, the patient. Maybe you’re the mother, or the brother, or the spouse of someone fighting cancer. My hope is that this would bring healing to us all.

1 Corinthians 13:7 (ESV)

“Love bears all things, believes all things, hopes all things, endures all things.”

20
Jul
2016

So Long, Brave and Strong

Before and After Cancer Stephanie Madsen

I’ve carried the weight through deep valleys and dark caves. Hunched over, I’ve trudged through quicksand, walked miles through the most desolate of deserts, and clawed my way over the steepest cliffs. Feet worn raw, knees scuffed, fingers bleeding. Sweat stinging fresh wounds. Several times wanting to quit, I didn’t.

Tripping over rocks, my heart whispered, “Brave and strong.” My body aching. Sore and tired and desperate for rest, the wind beckoned, “Brave and strong.” Needing water. My tongue dry and cracked, family shared, “Brave and strong.” My skin burned and tender, friends called, “Brave and strong.” Repeating over and over like a skipped record playing in my mind.

Brave and strong.
Brave and strong.
Brave and strong.
Brave AND strong.
BRAVE AND STRONG!

Though not fully convinced, I started to believe it. Soon, I lived it. There was no other option. When fear arose, I’d be brave. When defeat taunted, I’d be strong. For years, this became who I was. Ingrained in the core of my being, this was my name. Through it all, this was me. Cancer couldn’t compete, for I was far too brave and far too strong.

It wasn’t until the heat of the desert cooled, the sun slipped into the night, and the moon shone bright once again that I realized brave and strong wasn’t all I’d been. The light has a powerful way of illuminating even the darkest places. Behind brave and strong hid terrified and incapable. Afraid, weak, uncertain. Behind the warrior was the wounded. Behind the shield was the flesh. Until now, I didn’t even understand that there was something beyond bravery and strength. I didn’t have the capacity to carry the weight of it all, so for that season, I clung to brave and strong.

Pummeling perspective into my spirit, this realization has been swift and direct. When you hear that you’re brave and strong enough times, you take ownership. You embody the meaning of each word. They transcend from mere words to providential destiny. They grow big and mighty, overshadowing the rest. Though several moments left me shaking in fear, brave and strong took over. There was no time, no energy, no resources, no ability to be less than. But then the sun sets, pushing them off into the horizon. When cancer loomed like an endlessly haunting ghost, I wore the shield. But cancer is further and further away in the distance and I’m learning that there’s more. Behind brave and strong is great vulnerability.

I’m sitting in that vulnerability now. I’ve set the shield down and have noticed my wounds. Oh, the wounds. Burning, searing pain. My guts are all but spilling out before me, and I sit here looking at the carnage of the miles journeyed these last few disease-stricken years. It may sound odd… It sounds odd to me… I didn’t realize how much cancer had hurt me. How many wounds brave and strong covered up. How much fear and desperation the shield shadowed. For so long I denied the pain in order to endure it.

In a battle to the death, I have won. I’ve survived, succeeded, and overcome. Endurance has paid off and now it’s time to rest. Time to recover. Time to unwind. And most of all, time to heal. Looking at these wounds, I’m realizing healing isn’t going to be an easy process. It’s going to bring with it its own level of pain. A pain that must be walked through, not avoided. While the shield of brave and strong allowed me to endure the wounds, healing will force me to clean them. To heal is to pick out the thorns, wipe away the dirt, cleanse the area, and delicately salve. If not properly cleaned, the wound is restricted from healing. Yet, if you allow the healing to begin, but pick the scab each time it develops, ultimate healing cannot occur either.

I can’t tell you that I’m excited to clean my wounds. From what I’m seeing on the surface, it looks messy. Years and years of struggle caked into deep gashes. I also can’t tell you that I even know how to clean this on my own. I’ve never attempted a wound so deep. Like many, I’m going to need reinforcements like counseling, therapy, and support. Of this, I am not ashamed. And neither should you be. I can tell you that I do look forward to the relief healing brings. I know I can’t begin to fathom the debris that rests in my wounds, but I’m ready to scrub it out. I’m ready for the soothing comfort of the salve and the cute design on the bandaid I’ll pick out.

I know I’m not the only one who has carried a shield through the trenches of life. We all do. It’s how we survive. Just as I was brave and strong, so you may be too. But once the battle is over and the dust settles, the shield’s job is done. Shine it up, we’ll need it again someday for a different circumstance. Because… L I F E. It can be terrifying to address your wounds. To look down and see what happened behind brave and strong. But I have faith that healing comes from vulnerability. That redemptive restoration is birthed in the midst of that vulnerability.

It’s time to heal. I’ll grab the bandaids.

Jeremiah 30:17 (ESV)

“For I will restore health to you, and your wounds I will heal, declares the Lord…”

06
Jul
2016

Cancer In The Rearview

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We said goodbye and drove away. The anticipation and excitement was palpable as we voyaged on. We looked at each other in amazement that we were actually doing this. Are we really moving to Austin? Is this a dream? The adventure had just begun and, though we had no idea what our future would look like, we felt peace. We knew that doors had closed and others were opened wide. We had been called to step forward and go beyond comfort. We barely even looked in the rearview mirror as we headed south. I thought I’d cry. I thought I’d be sad. But I wasn’t. Instead, my heart was cheerful and expectant. The leap of faith was more than we could have ever imagined it being, and we’ve only now landed on the ground below. This chapter is just getting started.

Not only has our move brought a refreshing newness, but it’s also ushered in a spirit of reflection. We’ve been spurred on and inspired. From reflection has come revelation, and what a beautiful thing that has been for us. Beautiful yet painful. Painful but necessary. We’ve spoken more openly about our last four years than ever before. Our perspectives have shifted and we are allowing ourselves to feel the weight of what our previous season looked and felt like. For me, it’s an odd space to sit in. I never realized how much I’ve tucked deep into the dark corners of my mind, with the subconscious intent of forgetting. But how could I forget? Cancer has left an indelible print on my very core. My blueprint was altered at diagnosis, and it will never be the same. But as time moves forward, I’m learning that that’s okay.

Austin has been incredible. Each day here has tangibly revealed God’s faithfulness. We’ve been planted in a life-giving, spirit-breathing, community-reaching church. New friends have quite literally shown up on our doorstep. Each act of kindness, no matter how large or small, is 150% attributed to the compassion of God. He has given us gifts from above, shining down attributes of Himself with each one. We know we are exactly where we are meant to be and that’s more than we could’ve asked for. You’ve probably noticed that I’ve taken a small break from writing, and I thank you for giving me the time to soak into our new adventure.

Still, I find myself looking in the metaphorical rearview often. Every day, in fact. Not looking back with longing, simply looking back to see it from a distance. To view the battle with new eyes. I’m searching each moment, reflecting on what once was. Everything I went through. Everything Matt went through. Looking back gives me gratitude for the present. Gratitude that pushing through the storm was well worth it. Gratitude for the perspective change. Gratitude for grace, healing, and restoration. I also realize that I look back to assure myself that it wasn’t a recurrent nightmare, but that it actually did happen in real life. You see, stepping outside of the shadow of cancer has an interesting effect on those who survive.

Every single day. Sometimes, more than once a day. Seemingly often enough that it went beyond notice, cemented in my subconscious. I drove by my very own cancer landmarks. The locations in Colorado that have been seared into my memory. In my mind, there are plaques firmly planted in the ground at each area of significance. The office building where I was diagnosed on January 25, 2012. Its plaque reads, “You have cancer.” The doctor’s office where I learned the reality of my diagnosis on February 14th of that same year. Its plaque says, “You have less than a 20% chance of surviving this first year.” The route in which we drove over and over and over, back and forth to appointments. It states, “Ready for that needle?” The hospital full of the medical staff and technology that saved my life. Its says, “Thank you.” The emergency room in which I garnered frequent flyer miles. It reads, “You have to be admitted.” The post office who mailed off thousands of dollars of medical bills on our behalf. It demands, “Give me your money.” The grocery store where I was first asked why I was bald. It says, “Why did you shave your head?” I couldn’t go a day without being reminded of the disease. It lurked in corners, hid itself in memories, and peeked around buildings when I’d pass by. Cancer haunted me every day and I didn’t realize that until we left.

I’m in a new city. A new neighborhood. A new climate. A new time zone. Everything and everyone who surrounds me is new. The only familiarity I know rests in my husband and what we brought on our adventure. Everything else is new and unknown. I can’t tell you directions on how to get to the grocery store. I couldn’t point to where the bank is. I surely couldn’t even decipher which way is north from where I’m sitting in this exact moment. Though unfamiliarity can bring discomfort, it’s exactly what I’ve needed. I needed something to be in our rearview. I needed something to look back on so that I could move forward.

God knew. He knew, thank goodness, He knew. My rearview is clear and I feel freedom that I haven’t felt in years. It’s not blissful freedom, more somber than that. It’s a freedom that acknowledges the broken road behind while allowing me to press on towards the future. Seeing cancer in the rearview has enabled and encouraged me to truly live life with frontward vision. It’s an oddly wonderful place to be. But I wouldn’t trade it for anything. Being on this side of cancer is something I’ve prayed for for years. It’s good to arrive with my diagnosis finally in the rearview.

John 5:8 (ESV)

“Jesus said, ‘Get up and walk.'”

20
Apr
2016

Fighting The Fear Of Recurrence

(As seen in Cancer Knowledge Network’s #YARally)

Treatment ends. Your hair begins to sprout anew. Your skin slowly smooths. Your energy levels rise. You can look in the mirror and see remnants of the person you once were. You’ve trudged through the hardest journey of your life and bear the scars that tell the story. Your doctors share the latest results from your scans and there is no evidence of disease. You’re cancer-free.

It’s time to move on with your life and dream again. You’ve gained perspective and see life in a new way. You’re ready to forge new relationships and deepen the bonds you already have. You’re excited to travel and see the world in a new light. You’re ready to pursue the dreams you were reluctant to before. You’re not afraid to fail, because you’d rather try than not try at all. Your character has flourished and you are stronger and braver than ever before. Because you’ve faced your own mortality, you are now fearless.

Right?

While many survivors experience a sense of relief and celebratory whimsy upon receiving cancer-free results, those feelings don’t always last as long as we expect them to.

At diagnosis, my number one goal was to be cancer-free. I wanted to defeat this disease and move forward in my life. I accepted the fact that I would lose my fertility through a radical hysterectomy. I knew it was the only way to reach survival. I faithfully attended every chemotherapy and radiation session. I grieved the loss of my hair, the changes in my skin, weight gain, and even my nails peeling off. I could no longer recognize the woman staring back at me in the mirror, but I reminded myself that this would only be temporary. Cancer would be only but a chapter in my novel of life.

I received my first clear scan seven months after diagnosis. My doctor was elated as she shared the news. No matter that I was given a less than 20% chance to survive the first year, I beat the odds. I was cancer-free! I danced around the house, smiling genuinely for the first time in months. My husband and I celebrated. The burden of cancer began to slough off our shoulders and we were able to see the future we so desperately hoped we could share together.

But that’s not how the story ended.

Because of the type of cancer I had, I would need routine scans every three months to ensure that the disease did not return. It was time for my first follow-up scan and I felt anxious. Only three months prior, a scan showed no evidence of disease (NED), but I was aware that cancer is hardly predictable. We followed protocol and I received the most potent and effective cocktails of chemo and radiation and it had worked. But just as our celebration began, the party was over. A softball-sized malignant tumor had grown within ninety days, and I was facing my first recurrence.

That moment changed everything. The knowledge that cancer had returned with a vengeance sent chills racing through me. To the depths of my soul, I was shaken. My fear of cancer rose exponentially from the trepidation I had experienced at diagnosis. I was facing my own mortality through realistic lenses as I knew my already small statistics would shrink even more. More surgery. More chemo. More pain, grief, fear, exhaustion, and nausea.

Diagnosis pales in comparison to recurrence. At diagnosis, the majority of people feel strong and able to defeat the giant. Bright eyes and bushy tails, we are ready for the fight. Determination and perseverance with a sprinkling of naivety propelled my first battle against cancer. Recurrence comes at a bigger price. The price that we know exactly what we are facing. There are fewer unknowns because we’ve traveled the road before, and can foresee the afflictions that are to come.

It’s been four years since diagnosis, and I’ve had three recurrences after first hearing the words, “You have cancer.” Some came swiftly like the first, only three months later. Other recurrences arrived further down the road. No matter the time that we are able to live without cancer invading our bodies, it never really goes away. Though it may not be a physical presence, cancer often lingers in our emotional well-being. A ghost that haunts us, never wanting to leave. We are constantly reminded that cancer can return at any moment. It’s normal for survivors to feel anxious, depressed, and fearful once treatment ends and NED is achieved.

Some survivors feel more scared after fighting cancer than they did in the throes of the disease. Once treatment ends, we are simply left to pray and hope with every remaining healthy cell within us that cancer will no longer choose our bodies as its residency. Life after cancer isn’t always what we dream it will be, therefore we should be prepared for what may come after this chapter has closed.

In order to look forward, we must avoid looking back. Not denying the journey we trekked or ignoring the fight, but by deciding that cancer can no longer have a vice grip on our lives, we can begin to truly live free of cancer. Fear of recurrence gives power to the disease. Our anxieties can fuel cancer, giving it control over us. When fear creeps in, we must stand against it, knowing who we have become in spite of the struggles we have faced. We are much stronger than we think we are.

We have looked straight into the eyes of death, and have come out on the other side. We have been beaten down, knocked around, and yet we have survived. Our faith has been put to the ultimate test and has grown in the fire. Hope has emerged from the ashes. Though we have lost much, we’ve gained more. We are different. We have changed, developed, and flourished. We must acknowledge that though cancer affected every area of our life, we have come out on top. Living every day is a choice. Choosing joy is vital to the continued success of a healthy and happy existence.

Matthew 6:34 (MSG)

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”

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