Posts Tagged ‘large cell neuroendocrine carcinoma of the cervix’

25
Jan
2016

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.”

16
May
2013

No Hair, Don’t Care

Sometimes, as a cancer patient, you want to blend in with the crowd. Blend in with those around you who have hair. Because, after all, being bald attracts attention and unwanted stares. Being bald equates sickness. And no matter how sick I feel, I don’t always want to look it. Sometimes, it’s hard to feel like a woman when the features that amplify your femininity fade away.

No makeup. Little hair.

No makeup. Little hair. (May 2013)

After being diagnosed with cancer in January of 2012 and learning I would lose all of my hair, I was devastated. I had just reached the point where I was obsessed with my locks, so facing the reality that they would be gone in a matter of weeks was calamitous. That was 14 months ago, and since then, I have lost my hair a few more times. But, never once had I grieved my eyebrows or eyelashes. In my second season of treatment, my hair loss became more of an inconvenience rather than devastation. I had gotten pretty used to it. However, this time around, chemo decided to take a little more hair with it. This time, I lost all of my locks… as usual, the new curls on my head and the hair on my legs and arms. But, this season, even my eyebrows and eyelashes disappeared. Everything. The only hairs I hadn’t been used to saying goodbye to were my brows and lashes, and boy did I realize what an adjustment that would be. I had never understood how much I had taken those short little hairs for granted.

What a difference brows and lashes make! (May 2013)

What a difference brows and lashes make! (May 2013)

As a woman, I like to feel beautiful. I like being confident in the way I appear to the world. I had always thought if I were to lose my lashes and brows that I would look like an alien. Or even a hairless rat. Or maybe a hairless rat-like alien. Regardless, I had thought that if my brows and lashes were to fade away, my beauty would soon then follow. After all, I had never had to draw my brows on, and only wore false lashes on few occasions. What was I to do?

I have an aversion to having all eyes on me. I don’t like all the attention. And, I don’t like being the sick girl. The cancer patient. Because of this, I’ve become somewhat of a chameleon. Not many people have been able to see me without my “mask” on. And frankly, because I appear to be healthy, it’s hard for others to see the face of sickness. When I’m made-up, cancer doesn’t shine through. And while that’s the point, it’s necessary to see what the “before” looks like.

Many women share that they don’t feel femininely beautiful after hair loss. I get that. I feel that way, too. But there is hope. And thank the Lord for makeup! Gifted with cosmetic creativity, I have been able to gather my tools and tricks and go to work on the canvas of my face. I am here to testify that as a woman diagnosed with cancer or for those suffering hair loss for other reasons, you can still be beautiful! Losing your hair does not mean you have to look vastly different from your prior furry self. It’ll take effort and creativity, but it is possible.

Makeup complete and hair on! (May 2013)

Makeup complete and hair on! (May 2013)

Cancer tried to take away a lot. And even though it has tried to strip me of my appearance, I will not let it. No hair, don’t care. I’m beautiful, regardless.

And so are you.

Isaiah 40:8 (ESV)

“The grass withers, the flower fades, but the word of our God will stand forever.”

 

13
May
2013

Disease VS Diagnosis

Trusting in God's path. (May 2013)

Trusting in something bigger. (May 2013)

I have come to the realization that for the last 16 months I have only faced my disease (cancer), rather than coming head on with my diagnosis. This is not necessarily a bad thing, and for me, it has been beneficial to my fight.

Until two weeks ago, I did not want to know the details of my diagnosis. I knew that I had been diagnosed with a gnarly type of cancer called Large Cell Neuroendocrine Carcinoma of the Cervix, but the statistics did not matter to me. I felt that if I knew the ins and outs of my diagnosis, I would be brought to my knees in debilitating fear. After all, what I had been told already frightened me. “Rare. Poor prognosis. Less than 100 women worldwide have ever been diagnosed. Aggressive. Resistant to treatment. Recurrence is probable.” In fact, this diagnosis is so rare, there is only one doctor with any knowledge about it. And admittedly, he doesn’t know much. Those words gave me a sense of what I was up against, and I wasn’t ready to find out what this beast really was. I knew it’s identity, but didn’t care for it’s traits. Some may call this naive, but I assure you, this was my version of coping. I was protecting myself in the midst of the most weakest moments in my life. Had I learned the cold, hard facts about my diagnosis, I might have been crippled in times that I needed to pick up my shield and stand firm.

Recently, I had an overwhelming sense that I was supposed to know more than just this beast’s name. I felt ready. Thus began my search. Previously, I had been told by several doctors that there really is not much research nor information about the specifics of my diagnosis, and that if I was interested, I could look at studies of lung cancers. Apparently they behaved similarly. However, instead of investigating cancers similar to mine, I wanted to know more about LCCC (Large Cell Carcinoma of the Cervix) specifically. I came across a helpful website created by my fellow “sisters” in this fight and the doctor studying it. Upon entering, I felt nervous, apprehensive, anxious… and ready. As I clicked on the “Education and Information” section, I knew I was turning the key to the door of reality. I began reading. What is it? Who gets it? What are the symptoms? How is it diagnosed and treated? And lastly… what is the prognosis? I paused for a moment and told myself, “Stop reading. You don’t need to know.” Yet as I was repeating these cautionary words, I could not stop my eyes from continuing on through the statistics. By the end of the section, I was relieved it was over. Relieved that I finally knew why my doctor cried after giving me this LCCC diagnosis. Everything that I had been told had been confirmed. This cancer is a jerk. Don’t get me wrong, all cancers are, but this one is the bully in the classroom that won’t give up.

My heart still races as I share this experience. My human flesh is fearful and doubting. I’m not ready to die. I have an overwhelming number of things I still have yet to do here on this Earth. I have dreams, desires, and goals.

Yet, with these feelings of fear, my hope is in something much bigger than my diagnosis. Someone exponentially larger than this mere irritant called, cancer. 

From the beginning of this journey, I have stood firmly in the statement that statistics are just numbers. They don’t matter. My life and death will not rely on numbers that people have put together, no matter how much or how little their research shows. My life and death are reliant on my Lord. He has the end say. He directs my paths. He declares when the fight is over. Not the doctors. Not a website. Not a percentage. Not a number. I cling to my God’s statistics, and through Him I can be healed, no matter the prognosis. Statistics didn’t matter 16 months ago, so why should they matter now?

Often we get trapped in what the world is telling us. Labels, titles, and diagnoses. We forget who has the first, middle, and last say of our lives. No matter how vast my doctor’s knowledge is, my God’s knowledge is incomparable. Our hope gets caged in the confines of a statistical box. We think that if a doctor tells us something, it must be true. While my intentions are not to undermine the immense research and knowledge that our incredible doctors possess, I’m simply saying there is someone higher than this. Often, in our flesh, we cling to the circumstance. Instead, we should be clinging to the promise. Clinging to The Creator, The Sovereign Director of our lives. Clinging to the hope for something greater than this. And that is what I’m choosing to do. Since diagnosis, I have committed to standing in faith, having hope, and embracing joy. That doesn’t change now that I have read the statistics. If anything, it has concreted my faith, hope, and joy.

Numbers vs God. Guess who wins that battle?

Standing firm in God's statistics. (May 2013)

Standing firm in God’s statistics. (May 2013)

Jeremiah 15:5-8 (MSG Version)

“Cursed is the strong one who depends on mere humans, who thinks he can make it on muscle alone and sets God aside as dead weight. He’s like a tumbleweed on the prairie, out of touch with the good earth. He lives rootless and aimless in a land where nothing grows. But blessed is the man who trusts me, God, the woman who sticks with God. They’re like trees replanted in Eden, putting down roots near the rivers— Never a worry through the hottest of summers, never dropping a leaf, serene and calm through droughts, bearing fresh fruit every season.”