Cancer Unfiltered

Imagine the unthinkable: The phone call you never thought you’d have. The words you never thought you’d hear… “You have cancer.” Then the tears you never thought you’d cry. I’m not sure the initial shock of a cancer diagnosis ever goes away. There are still many days when I wake up and wonder if this is all just a bad dream. But the wide array of emotions experienced on a weekly, even daily, basis include much more than just surprise and horror. 

I was on Facebook recently and saw a question posted in one of my cancer support groups asking, “will anyone ever understand what it feels like to be diagnosed with cancer?” Many women responded saying something along the lines of, “of course not, it has to happen to you or a close family member in order to understand the deep pain and emotion. No one else understands.” Though this is valid and often feels true, I thought to myself, “no one said I can’t do my best to try and explain how it truly feels to have cancer.” So, I will try to express the nitty gritty details and emotions that are unique to those closely impacted by cancer and are not enjoyable, but are very prevalent in everyday life. While this is not something fun for others to read, I’ve been using this platform to educate and hopefully help others impacted by cancer, and I believe this will be eye opening to many. I am not asking for pity, just for an open mind and heart to glimpse how difficult it feels to wake up everyday knowing I have stage IV cancer. 

Following the initial shock of my breast cancer diagnosis described above, I experienced some of the saddest tears I’ve ever cried, as well as an anger deep in my soul. “How could this be happening to me!? It’s not fair, I’m only 26 years old with so much life to live!” I couldn’t imagine a worse scenario. While the initial emotions are oftentimes the strongest, this is not to say I haven’t experienced extreme sadness, anger, anguish, frustration, and heartbreak as I’ve lived with cancer over the past two and a half years. I have spent many nights crying in bed to Nolan, my husband, after receiving countless bad reports from medical scans. I’ve had times where I’m so upset, I have no tears left to cry. Maybe it’s because a certain treatment was ineffective, and all of the difficult side effects I experienced were for nothing once again. Oftentimes, it’s because I am repeatedly mourning the “normal” life I once had. 

This is one of the hardest parts of receiving a cancer diagnosis. You have no sense of normalcy. Every plan you once had for your life seems to get thrown out the window and snatched away from your fingertips. For our family, it was losing the ability to have children, not being able to buy a house on our “perfect” timeline, and stopping work as a travel nurse—a career I loved—all because of one diagnosis. One day changed our lives forever, for what often seems to be the worst. In addition to these big losses, come many other disappointments. When you’re in active treatment, you’re forced to take things day by day, hour by hour, minute by minute. As someone who is a planner at heart, this has been so incredibly difficult to manage. I find joy in looking forward to that vacation I planned, but now I don’t even know how I’ll be feeling tomorrow, or if in a month my treatment plan will change yet again.  Although I've definitely learned to be more spontaneous, take things day by day, and go with the flow, I imagine this is something that will always be especially difficult. Having little to no control over your own life is not an easy way to live and I’m sure many would agree. 

As if depression, and the inability to control your life is not enough, cancer also produces loneliness. I believe this is because of two factors: Number one, it is a relatively rare disease to have in your twenties; number two, the side effects from treatment—fatigue, exhaustion, mental fog, etc.—force you to require more solitude and resting time. 

Before my diagnosis, I would not consider myself to be lonely or secluded. I was fortunate to rarely experience alienation since I was a pretty social person. The comfort and joy I frequently found in confiding and relating to my friends was unlike any other. Nothing could have prepared me for what it feels like to be “the only one” who has to live through cancer. I know this statement is an exaggeration, but this is how it feels. Of all my college, high school, and church friends, I am the only one with a cancer diagnosis. Being the only one in my circle of friends is not fun or easy. There is a barrier that cancer has created that forces me to feel isolated. This is not to say that my friends have not been there for me. In fact, it is quite the opposite! But regardless of how wonderful my friends are and how often they reach out to lend a helping hand or listening ear, there will always be a sense of loneliness, knowing there are no people in my circle or life stage experiencing the same life-changing realities as me.

Another aspect that contributes to loneliness is humiliation. I’ve never been one to love being the center of attention. It makes me uncomfortable for many reasons.  Now, because of my diagnosis, it feels as though I’m constantly forced to be the focal point. When you walk into a room you’re sure to feel as though everyone is staring at you, especially if you’re bald from chemo or wearing a headscarf. It’s as if the whole room is staring deep into your soul and knows everything about you except for who you are besides cancer. By this I mean they really know nothing about who you are, but they for sure know you have cancer and then go on to make other assumptions because of your diagnosis. “I wonder what caused her cancer? She’s so young. I hope she’s not eating sugar because that feeds cancer.” Sometimes I just don’t want other people to know what I’m going through! I long for the days when I could blend in with the crowd. There was nothing unique about me. Just a normal twenty something woman. Nowadays, I can sense the shock and pity in strangers’ eyes when they look at me and put two and two together. This young woman is bald… she must have cancer. 

One reason this is so difficult is because it feels like people treat me differently. 

“I have to beat around the bush because she has cancer.” 

“I can’t ask her how she’s really doing because she has cancer.”

While I know that cancer is a big part of my life - trust me, I’m living in it everyday - sometimes I want it to be the last thing people see when they look at me. There’s Lauren— a wife, sister, daughter, friend, RN, dog mom, Christ follower who happens to have cancer. 

Cancer also makes you feel weak. Weak in all aspects - mentally, physically, emotionally, and spiritually. There will be days when you can barely make it out of bed because of treatment. Doing normal day to day things such as going to the grocery store or doing the dishes can seem impossible. Other times you feel as though you can’t handle any more negative news. One more mention of cancer growth and you feel as though you’ll crumble. It’s funny because one of the most common things said to those of us with cancer is, “You’re so strong.” While I understand the intent, at times it seems comical hearing this when I can barely make it through each day without having a mental breakdown, and getting off the couch is a difficult task. Because of this weakness, you’re forced to learn how to rely on other people for help. This can be humiliating and cause you to feel like a charity case. It makes you feel super vulnerable and uncomfortable, especially at first. But with time, you learn that people want to help and it’s best to accept it. 

Aside from all these negative emotions, there are a couple positives that have come out of my diagnosis. Cancer makes me feel extremely humbled and loved. Cancer has allowed me to understand how blessed I am by the amazing community I’m surrounded by. The love and support so freely given by friends, family, and even strangers is overwhelming in the best way. At times, I wonder what I did to deserve such great support. It is the biggest blessing. The way our community has rallied around us and been there for us in all of the many ups and downs is so humbling, it’s hard to properly express our gratitude.

I also do not want to dismiss the new relationships I’ve made specifically because of cancer. I know that loneliness is one of the most common feelings associated with cancer, because one of the first things you’re told to do after you’re diagnosed is to find a support group! In other words, go find some other people who are going through something similar so you don’t feel like a recluse. There is something so comforting, knowing that in reality I’m not actually the only 29 year old woman in the world diagnosed with MBC, and I am so thankful for those friendships I’ve created because of this terrible disease. 

Being diagnosed with cancer is also humbling because God knows all the details of this difficult life path. Even though there are so many things I don’t understand, I know He has a plan for my life. It’s wild thinking that the God of the universe thought I’d be able to handle this insanely difficult journey. Well, actually He knew I wouldn’t be able to handle it on my own. That’s why He blessed me with such an amazing support team and His only Son to rely on. This road is painful, raw, and, real and forces negative emotions to frequently be at the forefront of my life. But through the pain, depression, anger, loneliness, weakness, and humiliation is a God who says, “I am there for you in the deepest valleys.” 

“Even though I walk through the valley of the shadow of death, I will fear no evil; for you are with me and you comfort me” (Psalm 23:4). 

He also tells us, when we are weak, we will be strong.

“My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” (2 Corinthians 12:9).

The Christmas Hope

The Christmas season is one of my favorite times of year. With so much anticipation for Christmas day, most people’s spirits tend to be filled with extra cheer. Words of joy, love, peace, and hope are so easily spoken—after all, “Tis the season to be jolly,” as the song says. When I think back on the many Christmases I’ve experienced, I know I’m fortunate to say that the majority of them have been filled with wonderful memories, surrounded by the people I love most in this world. Going to the Christmas tree farm, having special meals together, decorating sugar cookies, and jamming out to Christmas songs are a few favorites of mine. But I know from personal experience that with these special traditions and memories, come times of heartbreak and sadness for some.

Maybe your loved one who used to be around for your favorite holiday traditions is no longer here, or maybe you’ve never had great relationships with your family members, so seeing everyone send out their picture perfect Christmas cards can make you feel even more alone. Or maybe your Christmas will never be the same due to an unforeseen illness such as cancer. No matter the cause of your heartbreak or disappointment there are two things you should know.

1. I hear you and I see you. Even though our circumstances are probably different, I understand why you have pain around this time of year, and it is valid.

2. Despite the loneliness, bitterness, sadness, or anger you feel around this time of year, there is still hope. If you find this hope, you can experience all the joy in the world despite your circumstances.

I never understood the pain that the holidays can bring about until I was diagnosed with metastatic breast cancer right before Christmas. In fact, it was December 22nd, 2020 when I first received my diagnosis and thought to myself, “Christmas is never going to be the same.” Sadly, the trend of getting negative news around the holidays has continued for my family and me as I’ve repeatedly received bad scan reports at this time of year.

This year in particular has been especially and unexpectedly difficult. Once again my scans showed growth of cancer on my liver, but this time around my oncologist seemed less positive about the future. At this point in time she doesn’t believe that oral medications will be effective, so the plan is to go back to IV chemotherapy. Nolan and I left my appointment feeling devastated and to be frank, quite hopeless. Once again, our Christmas will be tainted by my depressing cancer diagnosis. I’ve found myself thinking “can’t we just have a normal, happy holiday again?!” Oh, how my family and I long for some good news! I’ve also asked myself if maybe God has put us through these trials around this time of year, because there are so many reminders of hope at Christmas time? After all, Christmas is a time in which we celebrate the greatest news of all, Jesus’ birth. A time where we rejoice because Jesus rescues us from our sins and frees us from the burdens of this world.

I was reading an advent devotional by Ruth Chou Simons, and a particular line really struck me. She writes, “Where you set your hope this Christmas season will determine how you find joy.” Since being diagnosed with a terminal illness, I have learned the hard way that there is so little I can put my hope in. All of the things I have trusted in the past—including my young and healthy body and medicine and medical technology—have continuously let me down. Many of my plans and dreams have been snatched away from me and each day is uncertain. The more I hope for a cancer free body, the more disappointed I become. I cannot put my hope in anything but my Lord and Savior or else my joy will be stolen for good.

This Christmas, I am once again reminded that my future is certain because of a baby boy who was born in a manger. Although my body is failing me, I have hope because I know that one day I will be freed from the awful, devastating pain I am experiencing now. My diagnosis may temporarily steal my happiness, but I know I can still experience genuine joy. This is one of the beautiful things about this time of year. As we anticipate Jesus’ birth we discover hope, and with that we receive His gifts of joy, peace, love, and when our time comes, eternal life with him, if we just believe. Instead of letting my diagnosis steal my joy this season, I am choosing to put my hope in God and trusting that He will supply me with all I ever need. This is not always an easy task, but the more time I spend in prayer and in scripture, the easier it is to remember His promises. Maybe the trials we face on earth are what we need to remember that Jesus is near, not only in the Christmas season, but for the rest of eternity. So, for the holidays this year, challenge yourself and ask: Where have I set my hope?

Scanxiety

It's a Wednesday morning... Just another day. But the air feels different to me, and emotions are running high. Tomorrow I will have a follow up PET scan of my entire body. The stakes are high because tomorrow will determine whether or not the last five months of intense chemotherapy were worth it or not, and it's all based on if this machine that I'm placed in can still detect cancer in my body.

It's been a long two weeks of waiting post-chemo until I'm able and ready to have testing completed, per my oncologist. So, I wake up the following day, ready to conquer the world and get this silly scan over with. Though that's not to say I'm not completely anxious and freaking out inside. While the scan itself is relatively easy - you just need to drink this delicious, thick oral contrast, get an IV placed so they can inject you with a radioactive tracer, and then after some more waiting, lie completely still on a table for 20 minutes - there's a fear inside of me that I can't seem to let go of. I've had a PET scan before, so "it'll be easy" the technician says. And while I know that the physical testing is nothing compared to what I've already been through, it's the mental game that makes this scan so difficult.

As I lie on the table for what seems like the longest 20 minutes of my life, my mind goes a million places. "There's a chance chemo worked really well and all my cancer is gone or at least has shrunk majorly," but the next minute I think "what if chemo did nothing, and the cancer is worse than before, and I'm dying?" So many emotions. So many possible scenarios. I try to take some deep breaths to relax but of course the machine is monitoring my respiratory rate and I see the wave on the screen above me as I take a deep breath in, only to see the wave fall on the screen as I exhale. "So relaxing," I laugh to myself. I try to close my eyes and pray that I will remain calm and that results will bring good news, but my mind is so distracted, it's hard to stay focused. Finally, the scan is complete and the technician comes in to release me to leave. The scan is over so I can go home and rest easy.

Joke's on me, because the next 48 hours will be more anxiety-inducing than the previous 24, because even though the actual scan is no fun, at least something was actively being done. Now all I can do is wait, and wait, and wait for what seems like forever for my oncologist to call me with the results. I try to distract myself, but in the back of my mind, I'm constantly feeling on edge. My phone could ring at any minute, but I have no idea when. And then it does. I try to steady my breath as the next few words I hear will determine the future course for my life, good or bad. This time, it's good news and I let out a huge sigh of relief.

But the next time I wait for scan results, only a month later, I’m caught off guard by some of the worst news I've ever received. "I'm so sorry, Lauren, but the MRI showed more cancer on your liver than we ever knew was there, so because of this, we will have to cancel all future medical and surgical plans and go down a different path," my oncologist says. "How is this possible? It can't be," I think to myself. I had just received good news from my PET scan a month prior and now these MRI results have to ruin all future plans. It takes everything in me to hold back tears while my oncologist reiterates the devastating news. I try to process everything, but the shock of it all blurs her words making it hard to understand that this is my new reality. All I know is the next few months will look nothing like I imagined, and the next time I'm forced to sit in that machine again I will be petrified.

.

.

.

.

I’ve come a long way since that summer of 2021 described above. While this is only a sliver of my cancer story, I share it to give some insight into the thoughts and feelings that occur when it is time for a scan, also known as "scanxiety." Although I'm not sure who coined this term, it's a very well known word in the cancer world. Many of us with cancer are required to have scans every so often - for me it's every three to four months - to observe the growth or hopefully shrinkage of cancer in our bodies. As each scan approaches, my family and I experience a wide range of emotions leading up to the results and the treatment plan going forward. My entire future can be determined based on a single test alone. And if I receive good news, God willing, I can rest at ease for the next three months until I have to repeat the process all over again.

It’s not a fun way to live, but sadly this is reality for those of us with cancer, especially if the cancer is a later stage or metastatic. I tend to say that I live my life in three to four month increments all based on when my scans are scheduled. If I'm fortunate and receive good news, I live the next three months like "normal" (my new cancer normal anyway). If I receive bad news, I have to throw many of my future plans out the window because new treatment courses require flexibility, time, and sometimes cause terrible side effects.

I'm thankful to say that my past two scans have shown positive results, but I've found that even though I've received good news in the past, it doesn't necessarily make the next scan any easier. One of the worst things about cancer is that it's so unpredictable, so I rarely have confidence that everything will be okay. The rollercoaster of emotions that comes with the ups and downs of cancer is not an easy ride. It is so hard not to freak out if you see one poor lab result, or read a negative report of your most recent scan -- thank you, patient portal. Especially if you've received bad news in the past. And when you have cancer, a disease you never expected to have, you feel as though you have to expect the worst with every future medical test so you won't be defeated again. Yet somehow, there's a tiny glimmer of hope in the back of your mind that you will be the anomaly and will beat this, so when you actually receive the negative news it still hurts and wrecks your soul. This may sound dramatic and make me seem like a Debbie Downer, but I've learned from experience that I'd rather not get my hopes up only for them to be crushed again in case of bad news.

Scanxiety is terrible and inescapable. I don't know anyone who likes laying in an MRI tube, but what's even more difficult is all the waiting. The waiting, sitting in the literal MRI or PET scan machine. The waiting for results to come back. The waiting to hear from my oncologist to discuss the results. And, potentially, the waiting to start a new treatment plan if results are negative.

As I'm writing this, I have a scan coming up in less than a week. I'm happy to say that because of prayer and distraction, as well as familiarity with the process of what's to come, I actually have been feeling less anxious about my upcoming scans than I have in the past. Still, I know that as soon as the actual day is here, I will experience anxiety. My stomach will be full of knots with the fear of the future, the frustration of being poked (again), having to lay in that uncomfortable tube (again), and the stress of the unknown. But in the back of my mind there will also be a glimpse of hope that this will be the time I learn I have no cancer left in my body.

This is scanxiety.