Posts Tagged ‘YACancer’

Guilt of Life By Reality of Death

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My heart sinks like a heavy weight in the bottom of my chest. My anxiety pushes through my body, stealing air from my lungs. My pulse quickens and my mind wanders. I don’t want to face this. I don’t want to talk about it. I’d rather lock it inside behind the smile on my face. Yet no matter how much I try to avoid the topic, it bubbles up in my throat like flaming lava searching for an exit. Though I don’t want to address it, I know I must.

The weight of survival is heavier than I was prepared for. Especially when not everyone has the opportunity to live. The guilt of life caused by the reality of death is piercing and painful and unexpected.

Grief has shown itself in different forms throughout my life. Sadness was expressed in anger when my parents divorced in my childhood. Fear was cloaked in avoidance when I was first diagnosed with cancer. And, most recently, guilt hid behind overwhelming and undefinable anxiety. I was anxious, yet unsure why. I felt lost though I knew where I stood. I was burdened by a sadness that haunted the hidden places of my heart. But I was alive and well, surviving, though confused about my sorrow.

Survivor’s guilt is something I knew nothing about prior to entering the gates of Cancerland. It’s a form of grief that I didn’t know existed until years after surviving an often fatal disease. Whenever I had heard the term “survivor’s guilt,” it was always in regards to soldiers returning from war or survivors returning from some form of disaster. I saw news highlights about people overcome with guilt that their fellow passengers did not survive the same accident that they had. Those who were buried in sorrow because they lived when others did not. Those angry, questioning “Why me?!” And here I am now, having survived a diagnosis that continues to claim the lives of thousands around me, sitting in the thick of survivor’s guilt for the very first time.

When I was first diagnosed with a very rare and aggressive, stage 3, metastatic, neuroendocrine cancer in 2012, I never asked why. I didn’t lie awake in bed at night wondering what I had done to deserve the sickness bestowed upon me. I didn’t question my life. I wasn’t angry. I wasn’t depressed. I was simply ready to live and willing to do whatever it took. My eyes were set forward, my posture strong.

During my fight against the third recurrence of my disease, my grandfather was diagnosed with a similarly aggressive type of cancer and ultimately succumbed to the diagnosis. And though I heavily grieved the loss of my dear Papa, survivor’s guilt never showed itself. When one of my close friends entered a surgery that I too had received, only to develop a blood clot and suddenly passed away on the recovery table, guilt never surfaced. I was terribly grief-stricken, but not guilty. With each day, month, and year that goes by, people around me, several of whom I was close with, have died from cancer. Though it wasn’t until the most recent loss of an incredible woman in our cancer community, I never experienced survivor’s guilt.

Melissa was a warrior. She was full of faith and proclaimed her powerful testimony each and every day. She spread hope like wildfire, offering a positive perspective to those of us who knew and loved her. She valiantly fought metastatic breast cancer even when it spread to her spine and brain. She continued to post encouraging messages on social media and consistently clung to Jesus. She was a light to us all. And then, days before Christmas, she took her last breath and left for Heaven.

I was paralyzed in grief. I couldn’t cry. I couldn’t think. I couldn’t be angry. I couldn’t put words to my feelings. While several friends around me posted thoughtful and heartfelt messages of remembrance of a life well lived and taken too soon, I retreated. In fact, when Melissa stopped posting as frequently on social media, so did I. It wasn’t fair. She beat cancer, it was never supposed to return. It wasn’t fair. I couldn’t find words to say. I felt guilty for being alive, for smiling, for laughing, for loving, for living. It wasn’t fair. I was guilty for surviving because she did not.

I am coming to understand that survivor’s guilt is purely an expression of grief. Guilt is birthed in our grief when we lose a loved one to something that we survived. Survivor’s guilt is the “Why me?” when we are cancer-free and they are not. Survivor’s guilt is the “If only…” when reflecting on our relationship with the one who has passed. If only I had talked to her more. If only I had prayed for her more. If only. Survivor’s guilt is feeling like you are wasting the chance you’ve been given. Survivor’s guilt is the burden of life amidst the reality of death. Survivor’s guilt is a comparison of their circumstance and your own. Survivor’s guilt is the “Should have” and “Could not.”

It’s easy to become enveloped in self-punishing thoughts and feelings of guilt. It’s difficult to face these emotions. But until we do, we dishonor the lives cut short. When I made the conscious effort to be still and listen to my feelings, I realized that being trapped in guilt does nothing but punish myself and diminish my own life. I had to step outside of my grief and understand that those we have lost would not want us to live a life buried by guilt and sorrow.

We are alive and we must live. For those who are not, cannot.

Matthew 5:4 (MSG)

“You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.”

PC: Kim Mitiska Photography

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 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.”

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…”

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.'”

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.”

Say The Words

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I stepped out of the house knowing that I would be offering my most vulnerable self to the world for one of the very first times. My wig was neatly tucked away in my luggage, sitting backstage to my bald, shiny head. I asked my husband, “Are you sure this looks okay? People will stare. Everyone will know that I have cancer.” After receiving tender encouragement, I soon believed his sweet words.

Nervously checking my reflection in the car mirror several times, we made our way to the airport. As soon as we parked, I recognized that I could easily reach into my suitcase and pull out my perfectly styled human hair wig and slip into the crowd unseen and unnoticed. Deciding to risk it, I tucked the thought away and confidently walked into the airport alongside my husband.

Immediately my fears were realized as eyes transfixed on me. Children were confused and couldn’t help but question why a woman would have no hair. Adults passed by and though their intentions were to cast secret glances when I wasn’t looking, I could feel their eyes on my naked scalp. I wanted to cry. I wanted to scream. I wanted to forcefully inform passersby that it wasn’t my fault. I wanted to stand firm and express my pride. I wanted to hide. My brave face hid my anxieties and we continued on to security.

I formed a game plan. No eye contact. If I don’t have eyes on them, they won’t have eyes on me. Out of sight, out of mind. I stuffed my overpacked carry-on through the conveyor belt and walked forward. The scan beeped and I assured the TSA agent that I had a port implanted in my chest. After thorough examination I was free to get my baggage and continue ahead. Determined to get to our gate as quickly as possible so as to avoid the ever looming stares, I rushed forward only to be abruptly stopped. An airline employee stepped in front of me and smiled. Thoughts began to race.

Please, don’t say anything. I’m vulnerable right now. I know I stand out, and I hate it. Why didn’t I just wear my wig?

“You are absolutely stunning.”

And that was it. My life changed forever.

Fast forward to a year later. Short stubble graced my once shiny head. I was embodying GI Jane and feeling pretty good about it. I looked forward to the day my hair would cascade past my shoulders, but knew that this was a start. For that I was grateful. Just another day at the grocery store… I placed my items in the checkout line and smiled at the clerk.

“Wow! I absolutely love your hair. It looks striking on you!”

An email nesting in my inbox…

“My fiancé tragically died two years ago and I haven’t been able to get off the couch since. I have felt hopeless and depressed and didn’t want to go on. And then I read something you wrote. I now have hope. Thank you.”

A message shared through social media…

“Because of you, my faith is restored. Your encouragement has changed my life.”

My youngest brother surprising me by shaving his head for his college graduation. Lifting his cap off and looking up into the stands as he received his diploma as if saying,

“This one’s for you, sis.”

A radiology technician who has performed my last three CT scans. She recognizes me each time and welcomes me with a smile. She knows just what I need and offers comfort as if she were family.

“I’m so happy to see you! I think of you often. How are you doing? Still celebrating, I hope!”

Kindness is life-changing. Little did each of these people know how much their kind words would lift me up. It’s incredible how, by simply saying the words, someone else’s life can be impacted forever. Kindness is remembered. Encouragement, support, well-wishes, and prayers are glued to our memories because they are a salve to our wounds when life is difficult. Offering kindness is a direct reflection of our character.

Our memories reside on a scale from happy to sad. Hurt to encouraged. Celebratory to grieved. Tragedy to triumph. Pain to breakthrough. There are always two extremes and our memories are defined by how they made us feel in those moments. When we are at high points in our lives, it’s the low glimpses we remember most. And likewise, when we are struggling through hard moments, it’s encouraging and kind exchanges that linger in our memory.

Withholding a kind word for someone is allowing them to suffer in their struggle. The fact is, we’ll never truly understand what someone else is going through, but that should never stop us from offering kindness. We’ve all felt the urge to say something to someone but have gotten in our own way of delivering the message.

Your waiter is visibly tired but trying her hardest to keep up. Instead of internally sympathizing with her, tell her how much you appreciate her service. A baby is crying on the airplane, and though your instinct would be to throw annoyed glances at the mother, offer encouragement instead. You see someone sitting alone, invite them to your table. You haven’t told a family member how proud of them you are. Do it! You have never shared how grateful you are for a specific friend. Let them know how much they mean to you. You know someone battling cancer… Encourage them. No one wants to feel alone.

Saying the words is all it takes. Though sometimes it will require us to step out of our comfort zones, the reward is always worth the risk. If only we had a glimpse into how our kindness would impact the lives of those around us.

I will never forget the words that have been shared in the times that I’ve needed them the most. Be kind today.

Proverbs 16:24 (ESV)

Gracious words are like a honeycomb,
sweetness to the soul and health to the body.

Finding Fertility as a Young Adult Cancer Survivor

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

“I’m sorry to tell you, it’s cancer. You will need an emergency hysterectomy followed by chemotherapy and radiation.” With one fell swoop, my life, dreams, and plans dramatically changed. Not only did I learn that I had cancer, but also that my chances of bearing children were erased.

Prior to my diagnosis, my husband and I spoke frequently about having children. We dreamt about how many we would have and what their names would be. We laughed at who they would take after. Would they be fiercely independent (and stubborn) like their mom or gentle and patient like their dad? Would they have Matt’s tan complexion and my blue eyes? We noticed every pregnant woman passing by and couldn’t even walk through Target without perusing the baby section, dreaming of all the possibilities to come. Babies were destined to be in our future.

From a young age, we both felt called to be parents. Though we initially got married with the five-year plan in mind, after our first year of marriage, we were both struck with a bad case of baby fever. We no longer wanted to wait and were ready for a bundle of joy. However, no sooner could we begin the journey to pregnancy before a monstrous disease barged through the front door of our lives. Cancer began to fill every area of our perfectly prepared existence, quickly leaving no room for children.

Dreams began to disintegrate right before our eyes. No matter how tightly we clung to our hopes of bearing children, the dust of our wishes slipped between our fingers, disappearing into eternity.

We begrudgingly traded morning sickness for chemotherapy induced nausea. OB/GYNs for oncologists. Ultrasounds for PET scans. Mom bobs for bald heads. Baby showers for fundraisers. Dirty diapers for hospital bed catheters. Pint-sized outfits for hospital gowns. Pregnancy pains for surgery recovery. Labor and delivery for a radical hysterectomy. Motherhood for survival.

Shortly after my diagnosis and prior to my hysterectomy, we met with a fertility specialist. We learned about preserving fertility and what that could look like for us if we chose to walk that path. She versed us on the difference between surrogacy and gestational carriers, and taught us what an IVF journey looks like. We spoke about harvesting eggs, creating embryos, and freezing them for future use. We learned that not only could we adopt children, we could also adopt embryos. Our fertility doctor shared organizations that financially covered the cost of IVF for cancer patients. The immense knowledge that we learned in that first meeting not only gave us peace, comfort, and understanding, but also left us incredibly overwhelmed. How would we even begin to figure out what to do?

Because of the aggressive nature of my type of cancer, we were given a short amount of time to decide which route we would take. In fact, in our case, we had one hour to make the most life-impacting decisions one can make. Diagnosed on a Wednesday, by Friday we needed to have a game plan. The reason our decision needed to be made so quickly was due in part to the fact that the following Monday I would either be going into surgery, or beginning the four week process of harvesting my eggs. The single most terrifying and stressful moment thus far has been figuring out what path to walk.

Would we move forward with our fertility specialist and begin the process of harvesting my eggs in order to create embryos that someday would become our biological children, or would we choose surgery with my oncologist, saving my life but reducing the chances of creating a biological family? Ultimately, after endless tears, prayers of desperation, and emotional pain, my husband and I reached a conclusion. The priority was my life, and regardless of if our children were biological or adopted, they would need a healthy mother. The following week I underwent a radical hysterectomy.

They say hindsight is always 20/20 and I agree. After further testing of my tumor, we learned that my diagnosis was much more critical than we initially thought. I was given less than a 20% chance of surviving the first year. The type of cancer I was fighting was hormonal and in order to harvest eggs, I would have needed to be on daily hormone injections. We cringe at the thought of what might have happened had we chosen that path. I would likely not be here today.

The reality is, every young adult with cancer faces a multitude of decisions including matters of fertility. Many are fortunate enough to have doctors inform us of our choices before making final decisions that may inhibit fertility in the future. However, too often young adults are not made aware of the finality some treatments may cause for their dreams of having biological children once they enter remission. A cancer diagnosis brings fear, and many treatment plans are decided under pressure and fear of survival without consideration of the lifelong ramifications of rushed decisions. Before making treatment decisions, young adults need to feel comfortable with the full scope of what life during treatment and life after cancer will look like with each option.

Each diagnosis is different than the next. Therefore, each treatment journey looks different as well. Depending on what type of cancer, the location of the malignancy, staging, and necessary treatment, preserving fertility should be dealt with on a case-by-case basis. My decision may not be the same as yours, and that’s okay. Young adults should be aware of every option before reaching a conclusion for their fertility. Not only is there IVF, harvesting and preserving embryos, but should the route of forgoing chances of a biological family be chosen (or required), one must know that that does not close the door on hopes of a future family. There are several options for family planning, and the choices continue to expand in number as our advances in the medical community continue to grow.

My husband and I have always wanted to adopt, and once we grieved the loss of a biological family, we knew that my diagnosis was affirmation of that path. However, we feared that due to my medical history, we would be disqualified from adoption. I’ve lost my ability to conceive and carry a child, would I now lose the ability to even adopt one? After further investigation and a handful of helpful adoption advocates and agencies, we have learned that my diagnosis will not affect our chances of adopting. In fact, though we are only in the beginning stages of our adoption journey, we have seen several friends, who are young adult cancer survivors, with beautiful, successful adoption stories.

Though a young adult may not be ready for children yet, they should be well informed of their options before making crucial decisions. This is where our oncologists, fertility specialists, and advocates play a significant role. A cancer diagnosis can be emotionally paralyzing — a fog that causes decision making to feel impossible. Medical professionals have an important duty to walk alongside us, advocating for our future. It is imperative that oncologists and fertility specialists view our fertility and family planning as if it were their own.

Most young adults are unaware of the multitude of family planning options that exist in the medical community, but with the help of caring doctors, finding fertility can be a much less daunting task. There is hope for finding fertility and family planning as a young adult diagnosed with cancer.

Jeremiah 29:11 (ESV)

“For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”

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