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

10 Ways To Be Better Not Bitter

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Life has a way of throwing curveballs. We’re all recipients of unwanted detours, closed doors, and unfortunate circumstances. In fact, I once heard that if you feel good about where you’re at and what you’re doing, be prepared, because it’s all about to come crashing down. I’d say that while it’s a rather fatalistic viewpoint, there is some truth to it. Life isn’t easy and it never will be. We all have seasons of greatness where everything seems to be going right, when stars align and favor shines down on us. But likewise, we each experience tragedy that seems to strike at all the wrong moments. Death, divorce, accidents, sickness. We’re all susceptible to unforeseen affliction. It’s not about avoiding or denying misfortune, it’s about being prepared for it. It’s about allowing tragedy to make us better and not bitter.

My husband and I were married on a beautiful, sunny day in June. We had a blissful romance. Our first date lasted for 9 hours and, by the second date, I knew I would marry him. We laughed, loved, and enjoyed each other. We might as well have had a Disney soundtrack playing behind us as we moved into our first home, spent many nights cooking together, and lived a fulfilling and abundant life. Then, right as we were gaining our newlywed momentum and forging our way as us against the world, life hit. 19 months after we shared our “I Do’s”, I was diagnosed with cancer and given a less than 20% chance to survive. Our curveball came barreling into our white-picket existence and we were left facing a tragedy of the highest magnitude.

It would be easy to be bitter after everything that’s happened since our wedding day in 2010. It would be natural to be bitter after the loss we’ve endured. It would be expected that bitterness would reside in our hearts after all of this time. But facing the end of your life will teach you something. And what we learned is that we have a choice to make in our struggle. We can become better or bitter, but we can’t have both. Be intentional about where your heart rests. Bitterness is sneaky and creeps in at the first drop of your guard. Here are 10 practical ways to be better instead of bitter.

  1. Choose Joy. And I’m not talking about happiness. There’s a distinct difference between the two. Happiness is an outward expression while joy is an inward decision. Happiness is a reaction to what’s going on around us. Joy is a conscious choice that no matter what happens, you will rise above. Choosing joy will transform the way you live. It will allow you to see beyond your circumstance to what really matters.
  2. Grieve, But Get Back Up. Grief is a normal response to a tragic situation. It’s okay to cry, scream, and get angry. It’s okay to eat an entire pint of ice cream to drown away your sorrows. Grief is healthy. Be sad. Be upset. Be hurt. But don’t stay there. Walk through those feelings, but make sure you continue to walk. Giving up in the middle of grief can swallow you whole. When you’ve finished your ice cream, set the spoon down. Holding onto grief can paralyze your process. If you want things to get better, feel it and follow through.
  3. Pick Your Friends Wisely. Some friends serendipitously fall into our lives while others are hard-earned. Remember, you are who you surround yourself with. If Bitter Betty is your bestie, her bitterness will most definitely rub off on you. Be mindful of how your friends make you feel. If they bring you down, cut them off. The same goes for certain family members. If you have a sibling/parent/cousin/etc that can’t stop crying over the spilt milk, step away. Find relationships that speak life into your circumstance. Everyone needs Positive Polly as a friend.
  4. Keep The Faith. No matter your religion or beliefs, have faith. Faith that it is going to get easier. Faith that there is a light at the end of the tunnel. Without belief in something, there can’t be a belief in anything. My faith in God rescued me from bitterness. He is my strength when I have none. He will make a way where there is no way. Have faith that where you are now is not where you will always be.
  5. Have Hope. Similar to faith, we must never lose hope. Hopelessness is a breeding ground for bitterness. Those who give up hope often fester in bitterness until the very end. When everything else fades away, hope will be your anchor. When catastrophe comes, hope will be the gentle salve that heals your wounds. Hope gives us a future perspective and allows us to grow through our trials.
  6. Be Intentional. Don’t drift. Complacency leads to dissatisfaction and resentment. Without intent we become victims. We fall prey to our tragedy. A victim mentality is a guarantee for bitterness. Every curveball has limitations, but living without intent allows our challenges to overpower every area. Maintain some level of normalcy and be intentional about how you spend your days. Sitting on the couch is a recipe for disaster during life’s battles. We rarely have the choice of what challenges we will face, but we do have the choice on how we will respond. Being intentional is a sure-fire way to take your power back.
  7. Find The Lesson. Though it may be the proverbial needle in a haystack, you can find lessons in your tragedy. I’m not referring to reason why the tragedy happened, but rather the wisdom you can glean from it. Every struggle can teach you something. My fight against cancer has completely changed my life. There are many disappointments that have resulted from my diagnosis, yet, because I’ve searched for the lessons, I’ve become a better person. I’ve learned more during my lowest points than I ever have in my highest.
  8. Count Your Blessings. It’s easy to focus on the negative in the middle of misfortune. Remember that life hasn’t always been and won’t always be difficult. We all have reasons to be thankful. Focusing on the positive things in your life will shield you against bitterness. Blessings block bitterness. It’s as simple as that.
  9. Get Healthy. Physically, emotionally, and spiritually. We all feel better when we feel better. When physically weak, get emotionally strong. When emotionally weak, go to the gym and grow those muscles! Pay attention to what you’re putting into your body. Eat what gives you life. Though few want to cook healthy meals and would rather opt for quicker and easier options when life gets hard, making healthier choices will pave the way towards a better life. Treat your body kindly, it’s the only one you get.
  10. Help Others. Your tragedy gives you insight into what others may be experiencing. Be what you needed when you were thrown a curveball for someone else. Serving others gives us an outward perspective and allows us to see life for more than what it may feel like in difficult seasons. There will always be someone else who has it worse. Reaching out and lending a helping hand betters not only you, but the one you’re serving.

Hebrews 12:15 (MSG)

“Make sure no one gets left out of God’s generosity. Keep a sharp eye out for weeds of bitter discontent.”

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.”

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

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(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.”

Body Image After Cancer

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As seen in Cancer Knowledge Network’s, #YARally

“Welcome to Cancerland, here’s your new body. You may notice it looks a little different than your old one, but I can assure you… This is your body. Once you get past the bumps, bruises, scars, and bald head, you’ll realize it’s still you.”

As if I were waking up and looking in the mirror at someone else, I felt overwhelmed shortly after receiving my first cancer-removing surgery. My body was changing right before my eyes and I wasn’t sure I was able to cope with everything. My doctors told me to expect a large scar (from one hip to the other), hair loss, and weight changes. Not only would I have to wrap my mind around a life-threatening diagnosis, but I also would no longer be able to find comfort in the mirror.

I decided to take control and shave my head before the chemo took all of my hair; I wasn’t about to let cancer rip one more thing from my grasp. After my husband shaved the last of my locks, I stood up and looked at the woman staring back at me in the mirror. She resembled me. She had my eyes, but there was new depth to them. She had my smile, but there was new joy to be found within it. She was me, but she wasn’t. Cancer was beginning to change me emotionally, mentally, and physically. Physically, some changes happened within a matter of seconds and others took years to fully develop. My diagnosis ushered in a rebirth. Though my outer self was wasting away, my inner self was being reborn, refined, and celebrated.

Everything that I thought I was, now wasn’t. I didn’t realize that I had labeled myself prior to my cancer diagnosis. I didn’t understand that I had worked hard to uphold an image for many years. Most of today’s society gets too caught up in outward appearances, and I’d be lying to say I didn’t fall victim to that as well. Prior to cancer, I was a healthy, tall blonde in her mid-twenties. I had confidence and felt comfortable in my own skin. I was adventurous and took risks. And most of all, I could predict who looked back at me in the mirror every morning.

Cancer treatments rapidly began my metamorphosis. In the nearly four years that I have battled this disease, I have gained eleven scars. Each one is a visible reminder of the battle waged within my body. From the numerous chemotherapy and radiation treatments, my skin took on a new form. It was dry, cracked, and sometimes bleeding. For almost three years, my head was bald, and my face no longer donned lashes or brows. And while I, like many, assumed I’d lose weight throughout the course of treatment, I gained an astonishing 30 pounds within the first six months. The mirror no longer reflected the healthy young woman that I once was. I soon began staring at the stranger before me. My body looked nothing like it used to and grief, like a tidal wave, flooded my spirit.

Cancer causes pain, suffering, and most of all, grief. Grief comes in many forms and is experienced through many moments in this journey. I grieved the loss of my fertility. I grieved the changes of life. I grieved the dreams that I once had. I grieved the relationships that were lost. I grieved everything, and I still do. Cancer is an F5 tornado that rips through lives without a care as to what it swallows up. Grief is the rubble that remains when the dust clears. Along with the uncountable losses, I deeply grieved my body image. For months, I couldn’t find myself in the mirror. I searched her face, touching her tear-stained cheeks. My fingers traced over each scar in remembrance. Scanning her bald head and her sick, pale, exhausted body, I couldn’t find her. I couldn’t find me.

It wasn’t until I looked beyond the mirror that I discovered myself again. Behind the weight, the scars, the physical changes, and the grief was the woman I’ve always been. She was strong. She was determined. She was ferocious and ready to survive. She was kind and friendly. She had a streak of humor.

My body image evolved from my physical reflection to my inner character. When the outside is stripped away, all that remains is the inside. When a weak, frail, and bald person is looking at you in the mirror, you must acknowledge them. You must honor what they have gone through. You must pay respect to what they are enduring. But you mustn’t stop there. Look beyond what you see. Who are you on the inside? What does your character look like? Cancer will change your body image. But it doesn’t have to change who you are. You are more than your diagnosis. You are more than your reflection.

Proverbs 31: 25 (NLV)

“She is clothed with strength and dignity, and she laughs without fear of the future.”

The Rollercoaster Ride of a Cancer Scan

Stephanie in CT SCAN

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

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

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

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

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

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

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

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

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

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

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

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

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

James 5:15 (ESV)

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

#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.”

 

 

Joy and Happiness Are Not The Same

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

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

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

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

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

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

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

Proverbs 17:22 (ESV)

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

Living an Intentional Life

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I decided not to make resolutions this year. Instead, I chose one word that I wanted to represent 2015. Intentional. I desired to be more intentional with my time, my relationships, and my work. I didn’t want life to pass me by. I wanted to be present in everything I did and with everyone I was with. Yet somehow, I wasn’t as intentional as I intended to be. Sure, there were times when I was focused and diligent in certain areas of my life, but many things fell between the cracks. Decisions that were made and not made, relationships that were poured into and those that were put aside, and work that succeeded and some that failed, has taught me something. We must continually strive to be intentional. We must live a life that demands effort, otherwise our entire life will soon be witnessed through our rear view mirror.

My sole focus has been fighting cancer for many years. I have been diligent with appointments, medicines, and treatments. My intentions were always to beat this disease, and by the grace of God, my intentions were fulfilled. I’ve spent hours, days, weeks, months, and years in assiduous pursuit of my goal. I never let recurrences blur my finish line. I was persistent and determined. Fighting cancer requires devout commitment, after all. It demands every ounce of attention and every fiber of strength. I’ve been so committed to defeating this disease that the rest of my intentions got lost in the fog of cancer. Now I’ve succeeded (in Jesus name and with fingers crossed) and am ready to pursue other items as intentionally, but it’s not as easy as I assumed it would be.

It’s amazing how unprepared you can feel for life after cancer. You spend years trying to overcome your diagnosis, and most other goals lower on your priority list. But then… You’re cancer free… So, now what? You’ve attained your goal, and though it’s something you’ve passionately hoped and prayed for, once it’s gone, a void remains. Where all of your time and efforts were focused on cancer, there now sits an empty spot. What do I do on Mondays from 9am until 1pm? What do I do with this energy that has slowly returned? How do I plan my week now that appointments aren’t filling my calendar? I find myself stuck in the loss of a pursuit. I’ve lost what I’ve been so intentional about, and while I’ll never take for granted a fifth chance at living a long life, I’m sorting through what it should look like now.

I’ve heard that adjusting to life after cancer is similar to the adjustment that soldiers go through upon returning from war. And while I find the two vastly different, I can understand the analogy. I’m re-entering a world I’m not familiar with. Sadly, I’m often more comfortable in hospitals than I am at dinner parties. It’s an unsettling feeling. I’m beyond grateful that I’m on this side of the disease, but I often feel alone in my emotions and unsure of how to proceed with this new life. Now that cancer has passed, I’ve realized that I’ve gotten pretty good at being busy doing nothing. Now is the time to recommit to living intentionally. I’m relearning how to be busy doing something. I fought hard to survive, and now that I’m here, I dare not waste another moment.

It’s easy to become paralyzed in grief, fear, and uncertainty. But as the fog clears, I’m reminding myself that I beat cancer. I beat cancer. Not once, twice, or even three times. I beat a terminal disease four times. And I did it by being committed and intentional. Every day, I must wake up and say, “Stephanie, you did THAT. Now go do THIS!”

Cancer doesn’t have to be your interruption. It can be the loss of a loved one, a traumatic accident, a divorce, a miscarriage, or even bankruptcy. We all experience seasons that require devoted attention and commitment, and therefore we all find ourselves walking out of the fog with blurred vision. It’s time to re-harness our intent. You’ve come this far. Look at what you just walked through. Don’t let what’s ahead paralyze you. Let’s step forward with powerful intention and not let life pass us by.

Psalm 16:11 (MSG)

“Now you’ve got my feet on the life path, all radiant from the shining of your face. Ever since you took my hand, I’m on the right way.”

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