Posts Tagged ‘yacsm’

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.'”

The Financial Burden of Young Adult Cancer

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

I’ve endured thousands of needle pricks, undergone painful surgeries, and have withstood innumerable grueling treatments. I’ve been sick, bald, weak, over-medicated, under-medicated, poked, prodded, pained, and simply desperate for life. I’ve been triumphant, encouraged, accomplished, fortunate, blessed, and hopeful. I’ve gained insight, wisdom, and more medical knowledge than I could have ever imagined. My perspective has flourished and evolved. I have found a depth of joy that many never will. I’ve grieved loss. I’ve suffered hardship. I’ve authentically experienced mortality. I’ve overcome. I am brave and strong and alive. Yet among those things, I am also overwhelmingly burdened.

I survived cancer, but my bank account did not.

What many never mention in the beginning of your battle is that cancer is expensive. Not designer purse expensive. Not home mortgage expensive. Not even dream vacation expensive. Cancer is life-saving expensive. And frankly, before you’re thrust into the fight of your life, you can’t fathom what expensive really means.

Before diagnosis, my husband and I were newlyweds building up our savings account. We both worked full-time jobs and lived comfortably enough to enjoy frequent date nights and yearly vacations. We were building our nest egg with dreams of purchasing our first home and expanding our family. We paid our bills on time and lived with financial peace. But then cancer happened, and soon our nest egg dwindled to mere pennies.

Surgeries, treatments, and hospital visits began invading our monthly calendar. Our mailbox began filling up with bills from surgeons, anesthesiologists, technicians, physicians, and oncologists. And what we first felt was manageable soon became overwhelming. Not only did we need to process our emotions and feelings about me being diagnosed with an extremely rare and aggressive cancer at only 25 years old, but we also needed to process how we would pay for it all. What would our insurance cover? Are these doctors in-network? How much is our copay? Have we met our deductible yet? What are the tax implications for this?

The big question was, “Can we afford to save my life?”

Soon, I had to quit working. My first surgery was a radical hysterectomy in which I was horizontally cut open from one hip to the other; to say I was in pain would be an exaggerated understatement. My initial tumor happened to be deeply embedded in my pelvis. Post-procedure, I was sore, aching, and miserable. The first surgery resulted in a week-long hospital stay. I couldn’t walk up or down the stairs for nearly two months. I couldn’t drive. I couldn’t even sit comfortably. Therefore, working my full-time job was no longer feasible. Part-time became impossible as well. We became dependent on my husband’s income and, for a short time, had to move back home to live with my family.

Since then, I’ve had three recurrences. Each fight against cancer has involved surgery and treatment. And each surgery and treatment must be paid for. In total, I’ve received four major surgeries (each involving week-long hospital stays), 55 chemotherapies, 28 consecutive radiation treatments, a port placement procedure, blood transfusions, emergency room visits, innumerable prescription medications, doctor’s visits, and CT/PET scans. Each one came with a pricetag. Cancer has literally taken us to the bank.

My husband and I have learned that life doesn’t stop when cancer begins. Rent, electricity, cable and internet, trash, car insurance, phone bills, student loans, and more needed to be paid. So we began to compartmentalize. Survival here. Payment there. We found a basket to store medical bills in until we gathered up enough courage to go through them. We found ourselves transferring money from savings until our savings account dried up. With the help of our loving family and friends, fundraisers were held and money was raised to assist us. And though prior to cancer, receiving a $10,000 check would seem like a large sum of money, it soon barely put a chip in our medical debt.

Surviving cancer as a married person who can rely on their spouse for an income has been taxing, yet there are thousands of single young adults fighting for their lives without any means to pay for it. At 29, a friend of mine was diagnosed with triple negative breast cancer. She was single, active, employed, financially stable, and living on her own. Yet, like many upon diagnosis, she quickly learned that she could not afford her increasing bills. She soon had to move back in with her family and sublet her apartment. Without money to pay for her cost of everyday living, she began to heavily rely on her credit card. Within three years, she was thousands of dollars in debt and hadn’t even paid a single medical bill. It’s a story that is all too common for many YA survivors.

YA’s with cancer are not only fighting for their lives, but they are being buried in medical debt. Having to decide whether to purchase weekly groceries or pay a recent chemotherapy bill is not a decision anyone should have to make. Even when treatment ends and a young adult is declared cancer-free, the burden of debt often remains for years to come.

I’ve been out of treatment for one year, and the bills continue to flow in. I’ve developed a fear of voicemails and unknown callers, and when my phone rings, my heart grows heavy. The reality is, like many of my fellow survivors, several of our medical bills have now gone to collection agencies and they persistently call us in hopes that we can reconcile them. My husband and I have paid thousands and thousands of dollars, and still have thousands more to go. We have found the light at the end of the tunnel and are slowly but surely recovering from cancer. The financial burden, though still present, is growing lighter.

It may sound crazy, but we’d do it all over again. We simply cannot put a pricetag on my life. And you shouldn’t either. The bills will come and the money will go. Life is too precious to be seen through the lens of a dollar sign.

“Romans 8:28 (ESV)

And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

*Photo: Flickr

4 Years Later

It feels like yesterday that I first heard the most powerful three little words, “You have cancer.” In reality, it was exactly 1,460 days ago. On this very day, four years ago, our lives changed forever. My husband and I have been reflecting over that moment and the years that have followed and we are blown away. Blown away that cancer is a part of our story now. Blown away that I’ve survived. Blown away that our marriage is stronger than ever. Blown away at the beautiful story that has emerged through the vast wreckage.

Four years and two days ago, on Monday, January 23rd 2012, I went in for my annual women’s wellness exam. I found a different OB/GYN in hopes that a new doctor would be able to answer all of my questions. I had been experiencing symptoms for a year and they were growing in severity. Over the course of those twelve months, I visited more doctors than I can count in an attempt to figure out what was wrong with my body. I had blood draws, pelvic exams, and ultrasounds, yet they all came back clear. There were many days that I would return home, a 25 year old newlywed, and cry to my husband that I thought I was going crazy. How could I not be when all of my doctors were telling me that I was okay? I knew something was wrong. I could feel it. I could sense it. And I had an urging that I simply could not ignore. That Monday, the answers to my questions began to be revealed through a generous doctor that was determined to help.

I laid on the examination table with my feet in the stirrups as my new doctor went through a normal exam and pap smear. Within minutes, she said, “Oh. Hmmm.” Typically, a response you don’t want to hear from a medical professional, I was relieved. After asking if she noticed something, she let me know that she could visibly see what she initially thought to be a fibroid on my cervix. Would this explain the bleeding, stomach pain, irregular menses, bloating, weight gain, unusual cramps, hair thinning, and more? While taking two biopsies from different areas of the mass, she said that fibroids could cause numerous symptoms and that this could be the answer. The exam was over and she stepped out of the room while I got dressed. I remember exactly what I wore that day. My doctor asked me to return in a week, the following Monday so she could give me the results from the colposcopies.

Four years and one day ago, on Tuesday, January 24th 2012 (the day after my exam), I received a call from my OB/GYN’s assistant. I didn’t recognize the number, so I allowed it to go to voicemail. The message on the other end raised more questions and I was left shaking and confused. “Hi Stephanie. The doctor received results from your biopsy and asks that you come in tomorrow on your lunch break so that she can discuss results. Also, please bring your husband so we can talk about treatment.” Click. I called my husband and shared the news. My doctor let me know during my exam that fibroids may need to be removed surgically. Maybe the treatment they were referring to would be surgery. Though I had never experienced surgery besides my wisdom teeth removal, I felt like I could handle it. Remove the fibroid and carry on with life. No big deal.

That night I shared my worst fear with my husband. “What if it’s cancer?” He promptly cut me off and said, “We don’t say that word until and unless that’s what it is.” I laid awake that night grappling with the multitude of scenarios the results may hold. Ectopic pregnancy? Though highly unlikely due to our paranoid contraceptive plan (condoms and birth control), maybe. Fibroid? Still likely. Cancer? I can’t get cancer. I don’t want to lose my hair. I’m only twenty-five. That doesn’t happen to young adults. Finally I fell asleep, and everything up unto my appointment became a blur.

Four years ago, and depending on what time zone you’re in while reading this, almost to the minute, Matt and I walked into my doctor’s office. I remember being extremely sensitive to everyone’s stares. It felt like the entire office knew the results and that we were the only ones walking through the fog of the unknown. I was nervous but ready. We didn’t have to sit in the lobby for more than one minute before we were ushered into a room. It might have been the exact room where I was two days prior, but I can’t remember. Strangely enough, that detail has slipped from my memory. We sat down. I can describe the room. A wall with a large window was behind us. An exam table in front and to the left. Cabinets and sink to the right. Though it felt like an eternity of waiting for my OB/GYN, she entered the room in probably less than five minutes. She was pregnant with answers. I could see it on her face, though she maintained a friendly and professional demeanor. She sat down on a rolling stool with my medical file in her lap. With a somber smile she shared, “Stephanie, we received the results from the colposcopy. I’m sorry to tell you that it’s cancer.”

I’ve heard several people share what that moment was like for them. Some fall to the floor overwhelmed by grief. Some quietly shed a few tears. Some instantly choose denial. I simply responded with, “Okay, now what do we do? What are the next steps?” She had already scheduled an appointment the following day with my gynecologic oncologist and sadly shared that I would need a hysterectomy and chemotherapy. More news flooded from her mouth as we soaked it all in. Soon she was quiet. I can’t imagine being in her position. Having to tell someone that they have cancer is unfathomable to me. What strength and kindness you must have, knowing that your patient will forever remember that moment. I stood up and asked if I could give her a hug. I caught her off guard with my response to the news. I didn’t cry. I simply wanted to hug her for she was the one, in a handful of others, who helped me find an answer. She saved my life that day. We embraced and I whispered in her ear, “You’re my angel. Thank you for helping me.”

Matt and I sat in the parking lot in our car that clear, beautiful, mild winter’s day in Colorado. We barely spoke. The quiet was comforting. Soft words escaped our lips as we sat in disbelief. “I can’t believe I have cancer.” I was thankful for an answer to the symptoms that had been plaguing me, but was fearful of what was to come. We held hands. We had no idea what our future looked like. We were overwhelmed at the intensity of our new situation. The only person that I knew who had cancer had died. I didn’t want that to be me. I was young, barely twenty-five. We hadn’t had children yet, and I was facing an irreversible decision… a hysterectomy. A monster had ripped through our perfectly canvassed life and threatened to take it all away.

To say that it has been an easy four years would be a blatantly disrespectful, untrue, and a highly exaggerated lie. These last four years have been, by far, the most difficult, challenging, and scary years of our lives. I was diagnosed with an extremely rare and aggressive cancer called large cell neuroendocrine carcinoma of the cervix and was given a less than 20% chance of surviving that first year. We’ve experienced a depth of heartache that many will never face. We’ve felt immense pain, walked through tidal waves of grief, and desperately fought for the light at the end of the tunnel. We’ve been kicked down and beaten up by this disease, yet have chosen to stand up and turn the other cheek. We’ve stared death in the eyes and proclaimed victory over my diagnosis. We’ve turned our eyes to the One who can offer peace, hope, and true help.

Looking back over the most intense season of our lives, I can say I am thankful. Though four years ago I was afraid, unsure, and defeated, four years later, I am fearless, certain, and victorious. It’s now four years later, and I’ve undergone four major surgeries, three recurrences, 55 chemotherapy treatments, 28 radiation sessions, and I’m ALIVE. Cancer has forever altered my life, yet only because I’ve found true joy in my suffering, am I grateful.

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Lamentations 3:22-23 (ESV)

“The steadfast love of the Lord never ceases; his mercies never come to an end: they are new every morning; great is your faithfulness.”

“By The Way, I Have Cancer”… Dating After a Diagnosis

By The Way I Have Cancer PHOTO

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

Dating

Finding “the one” in a world of seven billion can be a daunting task. Sifting through people while searching for compatibility, meeting with strangers for awkward conversation, and allowing yourself to be vulnerable with someone you hardly know is not for the faint of heart. As if dating isn’t difficult enough, dating with cancer can prove even more challenging.

Among everyday issues like discovering who we are and what we are meant to do with our lives, young adults face a variety of life changing decisions. We are completing education, paving a way for our future, and stepping into our careers. We are establishing friendships and seeking long term commitment and love. We are eager and expectant and ready to begin the next chapter with someone by our side. Yet as a young adult facing a cancer diagnosis, beginning romantic relationships can be complicated.

When diagnosed as a young adult, dating often gets put on hold. You become engrossed in your treatment plans and immersed in the grief that follows your life-altering news. Though many soon discover that a diagnosis doesn’t have to prevent you from living a fulfilling life, when the time comes to step out into the sea of dating once again, some young adults feel paralyzed about where to begin. Having a cancer diagnosis is like wearing a neon name tag. We stand out. Whether physically, emotionally, or simply by circumstance, we are different than our potential suitors. Therefore, we have a few more things to keep in mind when introducing ourselves.

Choosing when to share your medical history is an important factor to consider when entering a relationship. Sharing a diagnosis on the first date may frighten someone. Waiting too late may cause feelings of betrayal and dishonesty. Many don’t want to be labeled by a diagnosis and want to be seen for more than just a disease, but young adults should be considerate in telling others their medical journey.

Experts state that a safe guideline is to share the news on the third or fourth date. Generally, young adults should share medical history before emotional attachment begins. This allows potential partners to make informed decisions on whether or not to proceed with the relationship. Be open to both possible outcomes. Your date may be uncomfortable with everything that comes with your diagnosis, however, they may be understanding and desire to move forward. As it would be with someone you simply lack chemistry with, be okay with letting someone go. And if your potential mate is interested in continuing a relationship, foster an open and honest conversation about how cancer affects your life.

Cancer affects each young adult differently and no diagnosis, prognosis, nor side effects are the same. Most cancer survivors struggle with changes in their sexuality. Whether it’s sexual function, body image, or self-esteem, many face a multitude of challenges. When sharing your medical history with your partner, be willing to share the facts.

Chemotherapy, radiation, and surgery can cause drastic changes to sexual organs. Heightened skin sensitivity, lower sex drive, and infertility are common among young adults with cancer. Being open with your partner will help guide your relationship into a deeper understanding for one another. Always remember that intimacy is much more than sexual intercourse. Communication, trust, and commitment are conduits to intimacy as much as physical touch is.

Marriage

Some view me as lucky. My husband and I had been married for a year and a half when I received the news that I had an aggressive gynecological cancer. However, the fact that I was already in a healthy, stable, and committed long term relationship upon diagnosis did not make receiving the news or handling the journey easier. Cancer amplifies hurts and wounds, as much as it does love and respect.

Unfortunately, many marriages do not survive the trauma, heartache, loss, and difficulties that cancer brings to the relationship. Couples must work not only to save the life of the person afflicted with the disease, but also to save the life of the marriage. Each individual grieves differently, and my husband and I found ourselves at different ends of the grief scale. At times I would be experiencing deep sadness, but my husband would be experiencing anger. Other moments I would be encouraged, but my husband would be feeling frustration. My husband had hope when I had none and vice versa. Because no two people are identical in emotions and experiences, patience, forgiveness, and love are key in maintaining a healthy relationship.

Four years ago, as my husband and I sat in the car in the hospital parking lot after hearing of my diagnosis, he looked at me and said something so profound it has defined our relationship. “Some may say I didn’t sign up for this, but I did. I vowed to you, ‘in sickness and in health,’ and I’m not giving up on that promise.” Among many reasons why our marriage has thrived amidst this disease is that we simply committed to one another. To love, respect, and hold each other up. Marriages don’t have to fail after a diagnosis. They can thrive and grow into something more beautiful than you thought possible.

Relationships can be fun and they can be challenging. If you are a young adult cancer survivor and are ready to enter into a relationship, remember to be kind to yourself. Though being vulnerable is often more difficult with a diagnosis, dating requires vulnerability. Do not let fear of rejection keep you from finding love, happiness, and a fulfilling long term relationship. Keep in mind that there is someone for everyone, and though you may have to filter through some duds, you can and will find the perfect person for you. If you are a young adult married cancer survivor or spouse, remember to be gentle, patient, and forgiving. Cancer has already taken so much from you, don’t let it steal your love as well.

Philippians 1:9 (MSG)

“So this is my prayer: that your love will flourish and that you will not only love much but well. Learn to love appropriately. You need to use your head and test your feelings so that your love is sincere and intelligent, not sentimental gush.”

#YARally With Cancer Knowledge Network

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A variety of exciting developments have been stirring lately! If you follow me on Instagram or Twitter, I’m sure you’ve seen posts about my recent business trips to New York City, Orlando, and Houston. I am touched that my story is impacting and inspiring so many, and in turn that I am able to travel and share a message of hope and faith around the world. We were never meant to walk alone and I am passionate about walking beside others in their struggles.

Among several recent ventures, I’m honored to officially announce my partnership with Cancer Knowledge Network. CKN is one of the largest cancer communities in Canada, and their goal is to help bridge the gap between young adult patients and oncologists. Because of the work of CKN and other organizations like Stupid Cancer and Livestrong, the YA (young adult) cancer community is growing in knowledge, understanding, and impact. When a young adult is diagnosed with cancer there is no longer a void of community, as many have rallied together to let the world know that we are not alone.

As the spokesperson and partner of the #YARally campaign with CKN, I’ll be writing several articles on a variety of hot topic issues that affect young adults in the cancer community including but not limited to body image, sexuality and relationships, finances, and fertility. Too often, the communication between doctors and patients is muddled and our goal in this project is to facilitate personal narratives combined with clinical resources in order to bridge the gap. We have recently launched our campaign, and I invite you to join this journey with us. Make sure to follow #YARally on Twitter, as well as my Instagram and Facebook pages in order to stay updated as this project develops. In addition, I will be co-leading Twitter chats and would love to talk with many of you on the topics being discussed in this campaign.

“It is my goal that by partnering with CKN, our voices will be heard where often they are overlooked. I invite you to join me in the movement to shine the spotlight on our generation as  we face challenges many simply do not face. Cancer doesn’t define your life, and I hope to rally beside the men and women of my generation to help pave the way for improved care and heightened awareness.” – Stephanie Madsen

Visit Cancer Knowledge Network’s #YARally with Stephanie Madsen to join the movement! I look forward to opening the conversation and raising further awareness for this critically important young adult community.

1 Thessalonians 5:11 (MSG)

“So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind.”

 

 

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