Posts Tagged ‘cancer patient’

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

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.”

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.”

 

 

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.”

Seeing Stephanie: Looking In The Mirror After Cancer

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Have you ever looked in the mirror and cried because of what you saw? When I first lost my hair, I would look at my reflection with tears streaming down my face. I would try to utter a word in an attempt to recognize my voice and confirm my identity. I couldn’t believe that it was me, Stephanie, in the mirror. It didn’t look like me. It barely resembled me. But it was still me. For months I saw a weak, sick, and (dare I say) unattractive person looking back. I looked neither feminine nor masculine. I was balder than bald with not more than a few hairs gracing my body. My face was swollen and discolored. I was embarrassed of my appearance. However, after receiving my pro card for fighting cancer not once nor twice, but four times, my perspective of my reflection changed. Rather than seeing a weak girl in the mirror, I saw a strong one. Instead of seeing sickness, I saw survival. I went from trying to hide my bald to embracing it and wearing it as a badge of honor. Bald became beautiful to me in more ways than one, yet I still didn’t quite see myself.

It took months and maybe years to fully embrace my new look. There were days where my reflection wouldn’t affect me at all, and others where I avoided the mirror at all costs for fear of who was looking back. As a woman, my entire life had revolved around beauty. Society told me that I had to wear a certain size, look a certain way, and have gorgeous hair to boot. Not only did my body physically change through treatment, my hair soon began falling from my head, and I felt far from beautiful. I grieved the appearance of who I once was. I felt that I lost her. I tried wigs in an attempt to bring her back, yet it was never the same. I couldn’t find Stephanie. She was no longer there… Or so I thought.

There came a moment when I realized Stephanie wasn’t a look. Stephanie was a person. She was a woman of character and integrity. She had a personality. She was more than a visual. This revelation allowed me to cope with my bald head. I began looking beyond the bald, straight into my eyes. I could still see a faint whisper of Stephanie through the glimmer of blue into the windows of my soul.

Though I accepted my new look, I longed for the day when I would easily find myself in the mirror once again. I impatiently awaited her arrival with each passing treatment. I wanted my hair, brows, and lashes back. I wanted my face to return to normal. Not only was I fighting for my life, I was (silly as it may sound) fighting for my reflection. Cancer has a deep and profound effect on one’s identity. I know I’m not alone when I express my grief over the transition of my appearance. Losing my hair was an outward representation of the war being waged within my body. It was a visual reminder of my mortality. I prayed not only to survive cancer, but also to not die without hair.

After four treacherous, exhausting, and desperate battles against this disease, I have come out on the other side. I dare not say that I have won, for the implications that arise when those who pass away from cancer are far too hurtful. Let me add, those who have died from this disease did not lose. Too often we hear that someone has “lost” their fight against cancer. What a deeply wounding word to place over someone’s life (and death). Please stop saying it. For reasons I may never fully understand, I have survived this disease thus far. I am now fifteen months cancer-free, and my hair has had nineteen months to grow. It’s been emotional seeing Stephanie return to my reflection. Glorious. Sweet. Incredible. Breathtaking. Emotional. As they did when I didn’t recognize myself in the mirror, tears appear on my face again. Not for the loss of something, but for the gain of something greater.

Hindsight is always 20/20. In the midst of our struggles it is difficult to see the entire picture. Due to circumstance, our blinders prohibit us from having a 360 degree view of our life. Not until we walk out of the rubble do we have the opportunity to reflect on the battle. I’ve had time, as each scan returns clear, to see how far I’ve come. Just as I watched Stephanie fade away, I’ve seen her return. My hair is nearly to the length it was when I first heard the words, “You have cancer.” I’m blonde again. My lashes and brows are full. When I look in the mirror, I don’t have to try so hard to find myself. I see Stephanie immediately. But it’s not just Stephanie that I see now. I see strength and victory. I see power and humility. I see joy and unending hope. I see deeply rooted faith. I see a survivor.

Though you may not see yourself right now, know that you are more than just a visual. You are not weak. You are not ugly. You are strong, and much braver than you can possibly comprehend. I encourage you to look beyond your reflection. Your hair will return and you’ll recognize yourself once more. Though your outside reflects your struggle, it also reflects your survival.

2 Corinthians 4:16-18 (MSG)

“So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever.”

Post Cancer Blues: The Struggle of Beating Cancer

You’re trapped in a dark room and can see a sliver of light outside. Your eyes have adjusted to the darkness that surrounds you and though you have embraced the fear of the unknown, you are seeking the light. Your goal is to reach the outside, but on your way you fumble and trip on things the darkness hides. You sustain injury by trudging through the hidden places of the room. You run into walls, slamming your face into a barrier. You can feel blood trickling down your cheek. You can’t give up. You refuse to be stuck in the dark. You move forward with your arms outstretched in attempt to intercept opposition. You’re bruised and scarred from your previous struggles to reach safety. Just when your path feels clear, you face another road block. You fall down and begin to weep. The light is an ever-changing mirage. One moment you’re within reach, and the next it’s across the room. You’re confused but determined. Overwhelmed but steadfast.

The dark is turbulent, but you find solace and peace within it’s walls. You’ve been locked inside for years and it’s become familiar, yet no matter the familiarity, you know you must escape. You can’t live like this, so you press on. Sore and frail, you stand back up and trudge forward. Cautious. Slowly. Continually looking at the glimmer of hope the light provides. You’re close now. You’re almost there. Fight for it. Do whatever it takes. Your life is on the line, after all. Though bruised, bloodied, weak, and tired, your spirit has a raging ferocity. Your will is strong. And when there’s a will, there’s a way. After many failed attempts, you finally reach the outside.

Your body spills out of the darkness and is overcome by the light. You’ve been fighting for this moment for so long, yet it’s not what you thought it would be. Your eyes can’t adjust. The light is violently blinding. Your hands stretch towards your face and you cower behind them. For so long your eyes were used to the darkness. You became immune to the blackness in which you survived. Now, the one thing you had been desperately seeking isn’t as relieving as you dreamed it would be. You’re confused and afraid. With light, you thought you’d be able to see which direction to move in. You thought you’d know what to do. You thought everything would be so clear. You feel as blind in the light as you did in the dark and you hate that you feel this way.

Cancer is the dark room I’ve found myself trapped in for years. I’ve fought so hard for the light at the end of the tunnel and for my own survival. I’m now cancer free and have metaphorically reached the light on the outside. However, after the years of strenuous battle, I find myself lost in life after cancer. I would much rather be in this position than still fighting for my life, but being overwhelmed is a very real experience for those in my position. Fortunately and unfortunately, I know that I’m not alone. Many survivors describe feelings of confusion once their treatment has ended and they have received a clear bill of health. We get so used to the fight that we forget what life is like without it. Some refer to it as the “post cancer blues.”

We spend every waking hour fighting our disease by religiously going to our doctors appointments, working towards getting healthy, researching the latest and greatest in cancer care, and receiving scan after scan in hopes that someday we’ll be able to live a “normal” life once more. We’re so consumed with the cancer, that it’s easy to forget what life was like prior to diagnosis. We’ve set aside projects and goals to make room for treatment and the thought of beginning projects and to-do lists can be overwhelming. Fear can linger once health returns. Many say that time naturally resolves feelings of anxiety and fear, yet some continue to struggle with depression long after their disease is eradicated.

I’m squinting in the blinding light of life after cancer. I’m stumbling like a newborn deer. I’m trying to find my bearings and regain my footing. I’m trying to rediscover the world I’m living in outside of the dark shadow of this disease. I know the brightness will dim and my eyes will adjust, but for now I think I need to find myself a good pair of sunglasses.

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Psalm 61:2 (ESV)

“From the end of the earth I call to you when my heart is overwhelmed. Lead me to the rock that is higher than I.”

Chemo Tips: 15 Ways To Make Treatment More Comfortable

When receiving the news that you or someone you love has cancer, life seems to slow down and speed up all at once. Doctor’s appointments are made, surgeries are scheduled, and treatment plans are discussed. It’s easy to become overwhelmed and anxious with the amount of information being catapulted your way. Navigating the road ahead can feel next to impossible.

Upon my diagnosis, I felt utterly lost. Life was changing rapidly before my eyes and I felt unprepared for what was to come. My doctors and nurses assured me that if I had any questions I could ask them, however, I didn’t even know where to begin. What’s a port? Will chemotherapy hurt? Will I throw up and lose my hair? What happens next? The questions flooded my mind. When one was answered, another presented itself. A diagnosis is exhausting.

I’ve battled cancer for nearly four years, and have fought four separate battles against the disease. My treatment plans have all been different, and I have tried a multitude of chemotherapy drugs over the years. I’ll never forget the thoughts and feelings that cluttered my mind before my very first chemo. I didn’t know what to pack or what to expect. My resolution was to bring everything. I packed like I do for vacation, a lot of too much. In these past four fights against cancer, I’ve had nearly 55 chemotherapy treatments, 28 radiation sessions, and four major surgeries (not including port placement). I’ve become an expert at chemo cocktails and everything cancer. I’ve learned what to bring and what to keep at home. I’ve mastered the chemo bag, and am sharing my tips with you today. Below you’ll find tried and true tips and tricks to make your treatment more comfortable. This list, like every treatment plan itself, is customizable. Feel free to add or remove items from your own chemo bag as you see fit.

1. Wear comfortable clothes:  Chemotherapy takes time. Treatment ranges from one hour to eight and may involve overnight stays in the hospital. Wearing clothes that breathe and move with your body can make the difference during your wait. When you’re at home, do you prefer to wear business attire, or do you like to lounge in sweatpants? If the latter is true, wear your sweatpants to chemo. Be sure to keep your port accessible and wear clothing accordingly. V-neck shirts are a staple in infusion centers.

2. Wear socks and/or close-toed shoes:  Hospitals and treatment centers are notoriously cold. Though it may be summer and sandals may seem appropriate, the inside temperature will be much cooler. Wear comfortable, close-toed shoes and or slippers with a hard sole. If your feet prefer freedom, bring socks to change into just in case. The softer and more fuzzy the socks are, the better. Keep your toes happy, bundle them up.

3. Bring a warm blanket: For some reason, one of the most common gifts patients receive from loved ones after diagnosis are blankets. People must assume that having no hair means that we’re cold all of the time. Touché. They may be right. There’s something about cuddling up with a nice blanket that brings instant comfort. Bring your favorite blanket from your newly acquired collection and invite it to treatment. You’ll both be thankful. Call it your blanket buddy, and you’ll have its heart forever.

4. Stow your favorite snacks: You may find yourself getting the munchies during treatment. You may want to eat out of sheer boredom. Regardless of your reasoning, bring snacks. You may develop an aversion to hospital food and not want anything they have to offer. Customize your own menu according to what chemo cravings you have that day and bring your favorite items. Get creative and fun with your food. Take whatever your heart desires. Most infusion centers won’t have restrictions on what you bring for yourself. If you have something that could appeal to the masses, consider sharing. You’ll make more friends that way. Whatever you do, avoid tuna. Your new friends will thank you.

5. Pack water: Like a camel, quite literally pack loads of water. You’ll want to stay as hydrated as possible during chemo. Headaches are common occurrences during treatment, and many can be linked to a lack of hydration. You’re ingesting your chemo cocktails, but in order to avoid to a hardcore chemo hangover, fill your body with H2O. Water will help flush those nasty toxins through your body. And just when you think you’ve had enough, drink more.

6. Bring music: Make sure your headphones and iPod are tucked neatly in your carry-on. While some patients find the soft hum of the infusion machines relaxing, others find the incessant growling quite aggravating. You’ll never know which side you’re on until you’re face to face with the pole.

7. Bring a laptop: …Or iPad if you’re fancy. Browsing the interwebs from your phone will drain its battery quicker than you can say “chemotherapy.” If you have work to do, having your laptop is a great way to kill two birds with one stone. Though you may wake up the next day to discover you sent humorous emails to your boss, having your laptop during treatment can make the time go by faster. Most hospitals offer free wi-fi, so use it… you’re paying for it after all. Download Netflix to your iPad and catch up on the latest episodes of your favorite show. Make sure to pack a charger; The worst place to be is in treatment without one.

8. Bundle books or magazines: You can no longer use the excuse that you don’t have time. You now have plenty. Get busy reading! That stack of books sitting on the shelf that you’ve always wanted to read is crying out for attention. Crack open some pages and sink into the stories that will transport you away from the recliner in the infusion center. Not a book worm? Bring magazines and catch up on the latest celebrity drama, who’s dating who, and who wore it best.

9. Pack a journal: Cancer causes grief, and grief causes emotion. Instead of bottling up your feelings, pour them onto the pages of a journal. Let out your fears, anger, hopes, dreams, and prayers. Document your journey so one day you can look back and see how far you’ve come. If you can’t muster up words, resort to doodling. Everyone can use more practice in the doodle department.

10. Invite a friend: Pick your most favorite and have them tag along. Let them know you only choose the best friends to watch a thick needle stab your chest. Tell them that only the special ones get to see your alter ego, Chemo Queen. Let them know the requirements of sitting with you and that they must be a Positive Polly throughout the duration. Make sure they aren’t queasy and that they like to talk and listen. Conversations with friends can often ease the realities of chemotherapy.

11. Bring board games: …Or mind games like Sudoku if you’re up for the challenge. Some find that keeping their mind sharp during treatment helps alleviate chemo brain. And, who said chemo can’t be fun? Pass the time by playing games like Scrabble and Yahtzee. I’m sure your fellow cancer fighters would love to join in. Keep in mind that Candyland isn’t just for kids.

12. Stash the sweets: Having sugar-free hard candy at chemo can put a smile on anyones face. Dry mouth can be a side effect from treatment and having candy may alleviate your woes. Ginger candies are the two-in-one go to for many. While they fulfill the sweet tooth, they combat nausea as well. Lemon drops are also a fan favorite. Though the cocktail is quite refreshing, in this case, the candy is the healthier option. Mixing alcohol and chemo has never been a good idea.

13. Carry some chapstick: Your lips will feel like they’ve trekked through the Sahara desert in the middle of summer. You thought the inside of your mouth was dry? Just look at the outside of your mouth now. Certain chemotherapy drugs can cause not only mouth sores, but also chapped lips. Having chapstick at the ready like a sword in battle will help defeat the most cracked smile.

14. Bring your inspiration: #MotivationalMonday is popular because it works. Keeping your mind focused on positivity will help harness your mental strength during treatment. Write motivational sayings on index cards or in the journal you have stowed away. Note encouraging bible verses or quotes to reference when you need a little pep in your step. Everyone has bad days, it’s normal. Avoid the traps of despair by reminding yourself of the hope you have for your future. Sometimes reading, “You can do this,” is enough to fuel your mind for the moment.

15. Pack a designated driver: While this item will not likely fit in your bag unless you’ve chosen to bring a suitcase, bring someone who can take you to and from chemotherapy. After treatment, you’ll be exhausted. You’ll want to doze off into a cancer-free dream. More than likely you’ll be chock-full of medications that may make driving more than interesting. Two words: Intravenous Benadryl. Drugging and driving, just like chemo and cars never play well together. Be smart, get a chauffeur.

Psalm 16:8 (ESV)

“I have set the Lord always before me; because He is at my right hand, I shall not be shaken.”

 

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