Posts Tagged ‘Large Cell Neuro Endocrine Carcinoma’

Fear, Faith, and Follow-Ups

SMadsenHope25-2“I don’t know about you, but I feel really good about this scan. You’re going to be cancer-free. I just know it.”

You’d be surprised at how often I hear this from family, friends, and sometimes strangers around the time I’m due for my latest follow-up scan. While my initial reaction is to bristle in response, it also breathes life into the dark and doubting places in my spirit. It’s a double-edged sword. I love and hate hearing it. I appreciate the words because, deep down in my soul, I feel them to be true. Yet, history glows on my medical reports. Having experienced three recurrences, I’m cautious and timid about predicting what’s to come. The truth is, we never know what the results of each scan will be until my doctor presents them to me face-to-face.

There have been seasons when I have felt, with every fiber in my being, that the cancer was gone. And I’ve been wrong. Likewise, there have been moments when my fears were overwhelming and I was convinced that the disease was infesting my body. And again, I’ve been proven wrong. I’ve had more scans than I can count, so I’ve learned to maintain a specific posture while facing them. Cautiously optimistic and abundantly thankful.

I stand with cautious optimism to maintain balance. It’s neither healthy to be ridden with the anxiety of looming bad news, nor to be preemptively and naively excited for positive results. It’s crucial to rest somewhere in the middle. Cautious and optimistic. Additionally, I remind myself to be thankful when scans are on the horizon. Depression, fear, and doubt cannot penetrate gratitude. Joy is birthed in a thankful heart. I reflect on how far I have come, all that I have, and all that God has waiting for me in the future. Second to salvation, life itself is the greatest gift of all.

“I feel good about it.” My dad actually said this to me yesterday. As soon as the words hit my ears, my insides shuddered. And as quickly as I recoiled, I also smiled. What an odd experience. I am full of faith and hope, yet fear pricks at my heart. You see, fear and faith are not mutually exclusive. So often we believe they are. That if we are afraid, we are simply lacking faith. How defeating must that be, for us to be faithless if fear is present? It’s simply not the truth. Fear is a human response, yet faith is a supernatural assurance. They can be felt simultaneously.

Likewise, I’ve grown to understand the difference between fear and fearless. Fearlessness is not a lack of fear but rather a resilient determination to push through the circumstance that makes us most afraid. Fearless means forging a way amidst paralyzing doubt and trepidation. Fearless is a mindset and a commitment. To be fearless is to overcome.

I am full of faith in a God who redeems, restores, and heals. Faith is an assurance in what cannot be seen, and while I have not tangibly seen God, I have seen Him to be true in my life. He is present, at work, and carefully orchestrating every detail. He has gone before me. He has written my story. He has rescued me. My God is alive, and I have faith in Him. At the same time, I struggle with the fear of my earthly opponent. My flesh is quick to breed anxiety and doubt. Rather than reflecting on the miracles woven in my story, my mind falls prey to the memories of past disappointments and recurrences. Fear is a looming shadow, stealthy to entrap me.

My faith is unmoved and unwavering, though my flesh is broken and afraid. Simply put, my faith is abundant because it rests in my Savior, and my fear is present because it rests in a scan. God does not change, our circumstance does. And right now, as my latest follow-up scan approaches, I am choosing to maintain a posture of cautious optimism and an attitude of gratitude. Am I afraid? Not overwhelmingly so, but enough to put me on edge. Scanxiety is real, no matter how long you’ve been cancer-free. Do I have faith? 100% YES! God is bigger than my fear and mightier than my disease.

As you read this, Matt and I will be in between appointments at MD Anderson for my next round of scans, tests, and doctors visits. If you remember my last trip to Houston, I officially reached the two-year mark of being NED, which means my scans have now switched from every three months to every six months. It’s hard to believe that it’s been only six months since my last trip to the hospital! We’ll be venturing to MD Anderson once again to not only meet with my specializing gynecologic oncologist and receive a PET/CT scan, but additionally to meet with a new team of doctors for further tests. (I’ve been experiencing intermittent nerve pain in my breasts and want to be extra sure it’s nothing, therefore I’ll be receiving a mammogram to be precautious.)

While I rarely look forward to these appointments, I find myself with excited anticipation for my last appointment on Thursday. It’s something I have looked forward to for years, and it’s hard to believe it’s finally here. Barring no new spots on my scans, my port will be removed! A momentous occasion indeed!

As we spend two solid days at MD Anderson with eight separate appointments, we ask that you stand with us in prayer. Though this isn’t our first rodeo and we aren’t expecting news other than the positive kind, fear and anxiety are present, but we are full of faith and cautiously optimistic for good results!

Philippians 4:6-7 (MSG)

Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.”

Stepping Back to Move Forward

I try my hardest to look forward. I encourage others to do the same when exiting the gates of Cancerland and transitioning into life after. Don’t look back. Push forward. Look ahead. Yes, it’s true. Vital to let go of the past in order to embrace what lies ahead. But sometimes healing requires us to step back in order to equip us to move forward.

I always told myself that one day I would visit the hospital in Denver where I received all of my treatment and surgeries. I thought fondly of the moment I would visit my doctors. I imagined that we would rejoice and celebrate at the hard work we all put in for me to be able to sit here today and be cancer free. Hugs and tears flowing as we would reflect over the difficult road that led us to this very moment. The numerous surgeries and chemotherapies. The middle of the night calls of desperation to my oncologist. Each needle poke in my chest to access my port. Every encouraging word and prayer that pushed me over the finish line. I dreamt of the day I would walk back into my doctor’s office with long, flowing hair and without trace of disease.

As time continued to go on, I thought less of the wonder of walking back through the doors of the hospital and more about the dread and anxiety it would cause if I were to do so. Thinking about the sterile smell of the infusion center would trigger instant nausea. I cried fearful tears as irrational thoughts flooded my mind. Would stepping back into the place I fought cancer cause my cancer to recur? Irrational, I know, yet it felt so real and valid and true. Why would I subject myself to the very place that housed my darkest and most painful memories? My life has moved forward, there’s no need to step back there. We live in Austin now, and though we’d be back to Denver to visit family and friends, there was no reason to go out of our way to get to that hospital.

I recited to myself what I’ve encouraged others to do… Keep your eyes forward. The past is the past, let it go. Yet no matter how determined I was to walk the talk, everything in me was pulling me back. I was tethered to that hospital. Tethered to the nurses, technicians, and doctors that saved me. Not only did my medical team save my life, but they invested years into it. Never once giving up. Always willing to try again upon each recurrence. They had become family, and the reason I found myself longing to go back was to reunite with my DNA. They had become a part of who I am, and denying it would be rejecting my very self. I had to see them. The longer I avoided this, the longer my complete healing would be suspended — trapped in some version of recovery purgatory.

We flew to Denver last month to celebrate my brother and new sister-in-law’s wedding. We extended our trip for the entire week and made plans to visit family and friends. We even made sure to leave a couple days open to ensure that we weren’t booked solid. In the back of my mind, I knew this was it. The time had come when I would walk through the hospital doors for the first time in nearly two years. I called my doctor’s office and let them know that I would be in town and would love to swing by and say hello. The receptionist gave me a day and time that was most optimal for my doctor and nurse. Once I hung up the phone, I was flooded with anxiety. Technically, I didn’t schedule an actual appointment, so if I decided to miss, it wouldn’t be that big of a deal. I noticed myself already backing out. I wasn’t so sure I could do it.

The day arrived and I could barely contain my racing thoughts and unbridled emotions. My husband was calm and quiet, providing stability and reassurance. As we drove down the familiar roads that led us to the hospital, I was becoming increasingly nervous. How would I feel when we arrived? Could I actually do this? Was I ready? The closer we got, the more of a wreck I became. Past memories washed over me and, without success, I tried to sort through them. Before I could fully wrap my mind around what we were doing, the hospital was in view. There was no turning around now.

I was instantly transported to the past. I saw myself bald and weak, barely alive, making my way to chemotherapy. I reached up to touch my head, in order to remind myself that I did in fact have hair, was cancer-free and beyond treatment. My body was physically urging itself to stop. White knuckled, sweat forming, I became antsy. “I don’t think I can do this,” I whispered. “It’ll be alright,” my husband encouraged in response. We drove through the parking garage to the roof, where only one parking spot remained. As Matt unbuckled his seatbelt, I stopped him from opening the door. I needed to sit in the moment. I needed to breathe. I needed to overcome the crippling fear and anxiety that glued me to my seat. I cried.

Soon, I gave the okay, and we walked toward the wing of the hospital where I had been over one hundred times previously. All so familiar, the smells and sights ushered floods of memories. Under my breath I tried to convince myself, “I can do this,” and while shocked I also repeated, “I can’t believe I’m doing this.” In a few minutes, we were standing in front of the entrance to my doctor’s office. Before pulling the handle on the door and entering my home away from home, I took a moment to center myself — remembering how important this was for my complete recovery — and without thought, we were standing in the middle of the waiting area, a beaming smile plastered to my face.

It all happened so fast. A smile reciprocated from the receptionist who I had spent hours with on the phone over the course of five years, scheduling appointments, leaving messages for my doctor, and paying bills. Everything had changed, yet nothing had. We hugged, and my eyes quickly shifted as my nurse walked in to grab a patient. Without shame, I interrupted and hugged her. No words needed to be shared just yet, smiles would do. She jubilantly told me that she would let my doctor know that I was here. Matt and I picked the two seats in the waiting room that we sat in countless times prior. I breathed it all in, and pouring over me came a loud, crashing, undeniable wave of gratitude.

My doctor peeked around the corner, smiled, and motioned that we follow her. I practically ran and found myself in a tight embrace with my dear friend, my oncologist. Neither of us let go. No words needed to be said. We cried into each other’s shoulders, and laughed at the precious miracle that was and still is. I’m alive. I’m alive. I’m alive. We pulled apart and looked at one another, taking it all in. We caught up on the goings on in each of our lives. With joy abundant, we reflected over the past five and a half years. Seeing the woman who fought for me, cried with me, and encouraged me countless times through my battle against this disease was more beautiful and fulfilling than I ever dreamed it would be.

Had I not stepped back, I could have never moved forward.

After making a surprise trip to the infusion center to visit my chemo nurses, I walked out of the hospital with my head held high. Healed. Death did not win. The enemy did not succeed. What was meant for harm was made beautiful. Restored. For the first time since I was diagnosed with cancer, I saw the whole picture. Not just a peek, or a glance, or a flash of its beauty, but a deep knowing that there was purpose in my pain. God’s redemption over my life overwhelmed me. He saved my life. He formed a team of doctors and nurses to come alongside me, and he knitted them into my story with deliberate intention.

It would have been easy to go the rest of my life without stepping foot into that hospital once more. Easy to avoid the pain, post traumatic stress, and anxiety. Easy to shove the feelings down deep into my soul. But it would have dishonored and dejected the journey that led me here. Sometimes we think healing involves forgetting or avoiding. That in moving forward, we shouldn’t dare look back. But there is power in addressing the place of our deepest pain. There is redemption in stepping back to reflect over how far we have come. There is honor in gratitude. There is healing in acknowledgement.

Sometimes we must step back into the depths of our grief in order to walk in confidence towards the future.

MJ and Steph

Lamentations 3:21-23 (The Message)

“I’ll never forget the trouble, the utter lostness, the taste of ashes, the poison I’ve swallowed. I remember it all — oh, how well I remember — the feeling of hitting the bottom. But there’s one other thing I remember, and remembering, I keep a grip on hope: God’s loyal love couldn’t have run out, his merciful love couldn’t have dried up. They’re created new every morning. How great your faithfulness! I’m sticking with God (I say it over and over). He’s all I’ve got left.”

Life Awakened: Five Years Later

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Life after cancer is more confusing than anyone told me it would be. Honestly, they didn’t tell me much of what to anticipate when the disease was gone and the dust settled. Possibly because most didn’t even expect me to survive the first year, let alone the second, third, fourth, and least likely the fifth.

From the moment I was diagnosed and through the subsequent years during treatment, the focus for all of us was to simply get through it. To survive. To make it out somewhat intact. Yet, there was never any conversation beyond survival. Merely congratulatory well wishes upon my last treatment and the classic line, “We hope to never see you in here again!”, as if I were a prisoner released from a lengthy stint behind bars.

No one told me what life would be like back in the “real world.” No one told me that I’d experience post-traumatic stress disorder triggered by sights, smells, experiences, relationships, and even food. I wasn’t aware that I’d feel like I didn’t belong in this seemingly regular, normal, everyday life. I never imagined being more comfortable in a hospital than in a grocery store. I didn’t think I’d be shy about regaining my independence. I had no clue what life was supposed to look like or what I was even supposed to do when I arrived at my destination, when I reached my goal, and when I survived the statistics that labeled me. I didn’t know what to expect because I wasn’t expecting this… Life.

We had conversations about notarizing wills, what items would go to who, if my husband would remarry, and that eventually, grief would settle and everyone left behind would learn to cope with my death. We clung to the hope that maybe, just maybe, this period in time would fade away into the history of my life’s story. That, as a grandmother decades from now, I’d share tales of a battle won with my grandchildren. I never thought I would die from cancer, but as oxymoronic as it may sound, I wasn’t sure if I would live through it either.

I wasn’t prepared for the difficulties that a life almost lost has brought me. It’s been a recurrent struggle, a back and forth tug of war between then and now. Cancer isn’t just a moment in time. It’s not just something that happens and eventually goes away. It doesn’t sit on a timeline nor does it have a beginning or an end. From the moment it physically rooted itself into my anatomy, it also marked my very DNA and soul. Though free of disease, I will forever be marked by it. Though I walk without cancer, I will forever carry it with me. It has changed who I am, and the biggest conflict I now face is rediscovering who that really is.

Today marks five years since I heard those life-altering, fateful words, “I’m sorry, you have cancer.” And Friday marks two years free of this disease. I always thought that time healed all wounds, and though I still believe there is some truth in that, I think that healing requires more than days gone by. If only I could go back to that very moment when life as I knew it was forever changed. If only I could look that Stephanie in the eyes and say, “There is no right way to heal. There is no correct way to grieve. There is no road map nor compass. You will learn as you go, and you must trust that God has given you the grace for each obstacle you will face. Cry when grief falls upon you. Dance when joy is overwhelming. Laugh from the very pit of your soul. And love like your heart knows no bounds. There is no destination to be reached but rather a life to be well-lived. Keep looking forward and never let what happens today steal your joy for tomorrow.”

This new year has been full of incredible abundance and freedom. It’s the beginning of regaining my life. For the first time since diagnosis, I finally feel free. Free to feel. Free to release. Free to let my guard down. Free to really live this life that I’ve been gifted. I feel like I’ve finally awoken to the life that I so longed for after cancer. I think it’s due in part to the fact that I’ve ultimately given myself permission to.

As a cancer survivor, there’s a balance between recognizing and honoring the journey itself and also accepting survival with open arms. Though survival is the one thing I vehemently fought for all of these years, it’s also the one thing I must face head on. I’m alive, now what? It’s easier to live with a victim mindset always focused on what once was and what should have been; It’s more difficult to move forward with victory on my side, accepting that though cancer has forever changed me, it will not define me.

I expected that on this day, my five year anniversary, I would be in jubilant celebration, reflecting in awe of the miraculous road I’ve walked. Without a care, concern, or any hint of grief or sadness. After all, it’s been five years. FIVE. My doctors said I probably wouldn’t even make it to ONE, so this moment in time truly is a milestone. But here I am, and though I absolutely feel elated to be free of the shackles that bound me for years, I’m still coping with the grief that lingers after trauma. And you know what? I’m okay with that.

Though no one told me what life after would feel like, I’m learning that there is no “right” way. I’m learning to embrace what was was, what is, and what will be.

Isaiah 43:18-20 (ESV)

“Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it?”

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

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.”

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.”

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.”

The Rollercoaster Ride of a Cancer Scan

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Bright and early on Monday morning I walked into the hospital for yet another follow up scan. I’ve received more scans than I can possibly count in these nearly four years of fighting this disease. PET scans, CT scans, X-rays, echocardiograms, and ultrasounds. Though my treatment has ended (which brings its own set of relief and fear), I continue to be checked for malignant cells. It’s a double edged sword, really. While I am frequently awarded with reassurance, I’m also being buckled into the roller coaster of anxiety once more. I cannot remember a time without these scans, and I’m not sure if I’m looking forward to the day when they cease to exist any longer. They are my lifeline and my nemesis.

These scans never get easier, no matter how frequent and routine they have become. Logically, I should be used to them, yet somehow each time feels like the first. I’m comfortable with the technicians and the machines. I am not claustrophobic nor afraid of needles. I’m not allergic to contrast and know exactly what to expect. However, no matter how comfortable I am with my surroundings, I don’t think I’ll ever be comfortable with the reason I am there in the first place. These scans tell me if cancer has again invaded my body or if it has finally given up and has not claimed residency once more. The remembrance of each recurrence floods my senses and can overwhelm me if I don’t keep a tight guard on my heart and mind. The phrase, “Out of sight, out of mind” rings true, but it’s not an easy practice.

Many ask how I feel when scan time comes and to be honest, it’s similar to a rollercoaster ride. Ironically, I used to love rollercoasters before diagnosis, yet now that cancer has entered my world, I have come to loathe them. Blame it on the amount of treatment I’ve had, the fact that I’m menopausal, how I know what true nausea feels like, or that my equilibrium is much different these days… Regardless, it would take a lot for me to willingly jump onto one. Yet, crazy enough, I willingly sit on the rollercoaster of scanxiety every three months.

Upon my regular exam with my gynecologic oncologist and the discussion of an upcoming scan, I am standing in line at the ride. I see others walking before me. Hands sweaty, nervous, and smiling artificially. Some have been on this ride so often that they don’t seem to be phased. For others, it’s their first time. The naivety is obvious, and I want to hug them before they hear the news. I know what to expect. I’ve been on this ride many times, but it never gets easier. This rollercoaster can be fun, but it can also be terrifying.

When I confirm my appointment time with the staff at the hospital, it’s in that moment when I’m buckled into my seat. The attendant pulls on the chest belt to make sure it’s tight enough. He walks to the next person and does the same. I double check. My seatbelt isn’t tight enough, yet I can’t get one more click tighter no matter how hard I try. Thoughts of me slipping out from the confines of the coaster and slamming hard into the pavement below flash through my mind. I’ve been on this ride before, yet I never know how it’s going to end.

Receiving the confirmation call of my appointment time is the beginning of the ride. The coaster slowly clinks up the ramp right before the big drop. Click. Click. Click. The anticipation is equally overwhelming and exciting. I know it will be over soon, but it feels like it’s taking forever.

The days leading up to the scan are the twists and turns of the coaster. One twist may be fun, while the turns can be frightening. My hands are gripped to the safety bars and my eyes are closed. Occasionally I open them to see what lies ahead, but it does me no good. My head is jerked from side to side as my feet dangle below me. In one moment I feel safe, and the next I fear for my life.

The morning of the scan is the point when the coaster reaches yet another upcoming drop. The momentum slows down while the adrenaline quickly courses through my body. My head lashes forward as the speed slows. I can hear my own heart beat. Again, I am being forced upwards. Click. Click. Click. I know this feeling, but I am never fully prepared for it. I’m praying. I’m looking at the other riders. They offer quick smiles and words of encouragement, “You can do this!” I know I can, but I’m still unsure.

Arriving to the appointment is the last drop. I know the ride is almost over, yet my hands are gripped tightly as I know I must free fall without control one last time. I’m excited, scared, and ready. I don’t scream, I try not to cry. I am and always have been a silent sufferer. I tell myself it’s okay. My eyes are closed tight as I begin to fall.

The scan is the wind flowing through my hair as I sail down to the end of the ride. My heart begins to calm as I know the ride is over. I begin to release my white-knuckled grip and my breathing becomes more steady. I never want to get on this ride again, though I know I will have to. Out of sight, out of mind. I will stay in this moment and not look too far ahead.

Awaiting the results is the walk to the kiosk that displays the picture that was taken as the coaster made its final descent. Will I look stoic and strong or fragile and frightened? This picture will determine my fate. Will I be celebrating or lamenting?

As of today, I’m still walking to that kiosk. I have not yet heard the results of my latest scan. I believe it will be good, but there will always be a small portion of me that is prepared for what happens if it’s not. When (not if) this scan shows no evidence of disease, I will have reached 19 months cancer-free. One step closer to the two year mark. One step closer to this being my past. One step closer to the exciting future that is to come.

Will you continue to pray for us as we await the results?

James 5:15 (ESV)

“And the prayer of faith will save the one who is sick, and the Lord will raise him up…”

Joy and Happiness Are Not The Same

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Joy and happiness are not the same. Think about what gives you joy; does it also make you happy? If you answer yes, which most of us would, you may then say that they are two in the same. But they’re not. Joy is a decision and happiness is an emotion.

I’m often told that I am a joyful person. I’ve been nicknamed “Sunshine” for nearly a decade. When cancer barged its way into my life I had a choice to make. Would I allow this disease to pull me down, beat me up, and steal my joy? Or would I stand firmly clinging to joy, no matter the twists and turns, pain and grief, sorrow and loss? As difficult as it’s been, I have chosen joy every single day. Whether it was the size of a grain of rice, or as large as the universe itself, I decided on joy. And it hasn’t been easy.

There are more days than I can count that I haven’t been happy. Society tells me that I’m not supposed to say that. I have a wonderful marriage, an idyllic relationship with my siblings, a close family, lifelong friendships, and financial provision. Yet happiness has not been a constant in my life. Whether circumstance reared its ugly head and pushed me over, whether personal issues arose and pulled me down, whether cancer forced its way in and ruined my perfectly pictured life, I haven’t always been happy. And you know what? I’m okay with that. Too often we are told to live happy lives. “Do what makes you happy.” That line makes me cringe. No! Don’t always do what makes you happy, do what makes you grow.

Because happiness is an emotion, it isn’t always attainable. If I watch a gripping movie that makes me cry, I’m not happy. Should I not watch those types of movies anymore? When someone I love passes away, I’m not happy. Should I limit my relationships so as not to feel the sorrow? When an argument arises in my marriage, I’m not happy. Should I subdue my opinions and stay quiet? (Maybe sometimes to that last one, but that’s not the point!) Happiness comes and goes. It’s a reflex to circumstance. It’s automatic. Hearing babies laugh makes me happy. I didn’t choose that, it was a relfex to a sound my heart enjoys. Attending weddings makes me happy. I didn’t choose happiness, it’s a reflex to another emotion… love. Happiness ebbs and flows dependent on what’s going on around us. Joy is dependent on us, no matter our surroundings.

Happiness is an outward expression whereas joy is an inward decision. Joy is choosing to rise above, regardless of our circumstance. Joy is staying positive amidst the most negative news. Joy is gratitude in unsavory situations. Joy is forging a way when there is no way. Joy is a choice. Joy must be chosen, we can’t expect it to simply happen. It’s a conscious decision that requires effort. It’s not easy to be joyful because it takes work. I’ve heard that some people are just born joyful, but I’d disagree. Some are born with more cheerful attitudes, but joy is an acquired trait. To acquire a quality, one must diligently practice. Fortunate for us, we live in a not-so-perfect world and have the ability to practice joy frequently. We are given daily opportunities to develop joy.

Among the innumerable things that cancer has taught me, the number one quality that I have learned is joy. I’ve learned how to look beyond my emotion and embrace joy no matter what tumbles into my life. I’ve learned that I don’t have to be defined by my amount of happiness, because what defines me is beyond an emotion. I’ve learned that a grateful heart is conducive to a joyful one. Seeing life through a lens of gratitude only deepens our joy. Developing joy now will transform how you see the troubles that are guaranteed to come.

Joy and happiness are not the same. Happiness is fleeting. Joy is fulfilling.

Proverbs 17:22 (ESV)

“A joyful heart is good medicine, but a crushed spirit dries up the bones.”

Milestones of the Miraculous

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Engrained in our spirit is the act of looking forward. From a young age we are encouraged to dream, imagine, and explore the exciting things the future has to offer. We are trained to set goals and achieve them. Children innately await the new adventures maturity will bring. Parents proudly prepare for their child’s first steps. Looking forward creates rousing anticipation of the opportunities that tomorrow may hold. We are consistently seeking what’s to come. The future is what we strive for.

There are distinct milestones that remain enveloped in our memory. Our typical landmarks may include graduations, marriage, children, home ownership, age achievements, career successes, weight loss, and financial accomplishments. Never have I encountered someone who has no intent for their future. No matter how big or small the goal is, we seemingly have them all of the time. Long term goals. Short term goals. Wishes, hopes, and dreams. They are synonymous to our existence.

Since cancer has entered my life, my goals have changed. The milestones I have reached are much deeper than my once superficial ideals. No longer do I crave the “next best thing.” No longer am I seeking superfluous nonsense that lacks ultimate fulfillment. The resounding similarity in the majority of my current goals is life itself. Once told I had less than a 20% chance of surviving the first year after my diagnosis, my goal was to beat that. Once told a recurrence would be difficult to make it through, my goal was to survive each time the cancer returned. Through each and every recurrence and subsequent treatment, my unsaid goal has been to achieve one year cancer-free. My goal is life. The one year mark has been my buoy. It’s been my north star while I’ve been lost in the wilderness. My lighthouse in the middle of a raging storm at sea. My compass when all sense of direction was lost. One year cancer-free has been a milestone I’ve desperately dreamed of reaching, but had never obtained.

One clear scan, praise God. Two clear scans, hallelujah. Three? Nope. Never have I experienced more than two clear scans in sequence. Cancer has always reminded me that it’s still here… Sometimes microscopic and sometimes maxing out at softball-sized girths. Reaching one year has become more than a milestone, it’s transformed into a miraculous feat. I’ve often thought, “It’s going to take a miracle for me to hit one year.” My latest scan brought more scanxiety than I have ever experienced. It was the scan I had never made it to. The one milestone I could never obtain. While sinking in the deep and dark abyss of the ocean, it was the buoy that I’ve always seen but couldn’t quite reach. Even though I’ve been fighting for three and half, one year has always seemed so far away… Simply a miraculous landmark.

I battled the inevitable in my head on repeat. I wanted to prolong the appointment’s arrival and fast-forward to the results all at once. Soon, I found myself walking into the doors of my home away from home. The hospital that housed my answers.

After redundantly checking the box that indicates I have cancer, ingesting the nauseating contrast, and waiting the long-winded forty-five minutes as my body soaks it up, my name is called. I try and smile naturally as I approach my technician. My heart races and I fear that she hears the pounding inside my chest. She’s sweet and gentle. She remembers me… They usually do. We joke as I need no introduction to the machine, and no further instruction on the process. I’m a pro, we both know that. I fumble to find a place for my purse. As usual, I then hand her my phone and pose in front of the device that quite literally sees right through me. She awkwardly takes a few snapshots and I ease her quiet questions by explaining the documentation of my journey. We share laughter out of polite necessity. I tell her my particular requests for a slower insertion of iodine, and lay on the cold, hard surface beneath the machine. My technician leaves the room. Everything the scan needs is fulfilled. I’m hooked up, laying still, and my heart begins to slow to a soft beat. A rhythmic tap of a drum, my heart is calm. My spirit is gently strengthened and prepared. No longer is it just the technician and I in the room. My hand is being held by someone neither of us can see.

The iodine slowly floods my body. The warmth is overwhelming and I instantly taste it in the back of my mouth. The machine starts to stir. Loud whirring begins to indicate the commencement of the scan, and soon I am being ushered underneath the spinning technology. The machine tells me to hold my breath for a few seconds, and then welcomes me to breathe once more. I’m praying inside. I know I don’t need to say much. “Please” is all I can utter into my spirit. The machine quiets, and slows to a hum. I’m brought out of the cylinder. My technician says, “All done,” and I thank her for being so helpful. I genuinely appreciate what she does day in and day out. For a split second, my eyes question hers. Has she seen my enemy inside of me once more or is she quietly rejoicing as she knows the results? The waiting begins. I’m looking forward.

After what always seems like months, I received the results. This time, I was back at the hospital in the middle of drug therapy. My infusion nurse, who has become a friend as she has walked me through every step of this journey, smiled as she shared the news. Tears fell from both of our eyes and I could no longer hold back the emotions that I had been guarding. I couldn’t believe it. Frankly, I still can’t.

I have officially reached my milestone! A milestone of the miraculous. One year ago on June 14th, my latest malignant tumor was removed from my body. I received more chemotherapy, and now, one year later, the cancer is still gone. There is no evidence of recurrent or metastatic disease in my body. I’m rejoicing, celebrating, and thanking God for His faithfulness. I’m cancer-free once more, and this time I’m breaking my own records. Now, I continue my drug therapy once every three weeks and recover. From here on out, each scan will be a milestone of the miraculous. I’m not only looking forward, I’m moving in that direction as well.

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Philippians 13:12-14 (MSG)

“I’m not saying that I have this all together, that I have it made. But I am well on my way, reaching out for Christ, who has so wondrously reached out for me. Friends, don’t get me wrong: By no means do I count myself an expert in all of this, but I’ve got my eye on the goal, where God is beckoning us onward—to Jesus. I’m off and running, and I’m not turning back.”

 

 

 

 

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