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).

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.

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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.

It's okay to ask if I'm okay

According to google, the definition of grief is the response to significant loss, specifically when someone we love dies. While sadly many people have experienced this type of grief, I believe there are many other circumstances in life that bring about grief. Living with cancer brings about grief because I am mourning many losses. The loss of the life I once had prior to a cancer diagnosis. The loss of future dreams and plans that were previously mapped out in my spouse's and my head. The loss of physical features that were a part of me including my hair and ovaries. Experiencing grief and mourning can affect your physical, social, spiritual, mental, and emotional health, so to say grief is difficult is no understatement. You can grieve something for so long and never fully recover from the trauma that you've been through. It truly impacts you for the rest of your life. And yet, many times a lot of the people you know, apart from close family and friends, are too afraid to ask how you're doing; or maybe they've just forgotten.

After speaking with others who have gone through different types of loss, such as the death of a family member, health problems, or a miscarriage, I've discovered that while the subject of our grief may be different, we have one thing in common. We all want to know that others care about our hardships, and we want to be asked how we're doing.

Since my original diagnosis I've definitely noticed that as time goes on people rarely ask me how I'm doing, unless I bring up my diagnosis myself. This has led me to feel somewhat alone in my suffering, and to ponder the fact that others' lives will continue to move on like normal. This is not a great feeling and leaves me wondering if people really care. At first I thought I was the only one who felt this way, but I then discovered that Nolan, my parents, and my siblings all feel the same way. Not to mention, close friends who're going through other trials have expressed similar thoughts and feelings. It's definitely not fun to feel alone in your suffering and as if no one cares, and while I know this isn't true, I'm sharing this because I think there is something that can be done. The aim of this post is not to cause feelings of guilt or pity, but instead to help people understand that it's okay to ask questions about my cancer diagnosis, or how I'm holding up mentally. And most likely it's okay to ask your other friends and family members how they're doing when they're going through difficult times.

Before I was diagnosed with stage IV cancer, I can honestly say I rarely faced any significant hardship. I remember when my close friends were going through difficult times such as parents getting divorced, or a grandparent dying and not really knowing what to say to them. How could I say anything helpful when my life was so "easy" and I couldn't relate to their situation? I found myself feeling sympathetic towards these people, wishing I could be empathetic, but struggling to find a way how.

Fast forward to receiving my cancer diagnosis, and having a completely new perspective on life. Now I'm the one who is going through a devastating hardship and there is so much I have learned because of it. Most importantly, it's better to acknowledge grief than to act as if it doesn't exist. While this may seem obvious, there have been so many times where I'm desperately wondering when the next time someone will reach out and show they really care will be. I think back to the days prior to diagnosis, and feeling as though my words would be inadequate when someone else was going through a difficult time. But I now recognize that just asking someone how they're doing means a whole lot more than saying nothing at all. I know it can be awkward, and you may not know what to say - trust me, I've been there before - but it means soooo much when someone reaches out to check in. I also think people don't want to ask because they're afraid of upsetting me and Nolan, or reminding us of our unfortunate situation. But I promise you, we'd both rather have someone show they care and recognize the gravity of our situation rather than ignoring it. I hate to break it to you, but it's not like we ever fully forget that I have cancer, so while you may feel intimidated bringing it up, we won't be upset. Worst case scenario, you bring it up, and we say we don't feel like talking about it right now.

I've also discovered that even if you can't relate to what I'm going through, I'd still rather hear from you. Don't feel stupid or inadequate. Simply asking how I'm doing or saying you're sorry I'm going through this and I don't deserve it means so much. Even if you don't know what to say, it will make an impact and help me feel supported. Not to mention I totally understand why there can be awkward silences when talking about stage IV cancer, but I'm more than happy to change the subject if needed. Just think about whatever struggles you're going through. Whether it's stress at work or school, the loss of a family member, or feeling down mentally, isn't it nice to have someone reach out to ask how you're holding up? Other people may not be able to fully relate to what you're going through, but it's the thought that counts.

Another thing I've noticed is that people tend to ask Nolan or the rest of my family how I'm doing rather than directly asking me. While I totally understand why people do this - they don't want to overwhelm or burden me with thoughts and questions - there are definitely a few ways this can backfire. Unfortunately, I don't always hear about these conversations, and that's when those feelings of loneliness or that no one cares creep in. The second issue with asking Nolan or my family members how I'm doing is that they can often end up feeling forgotten themselves. We've found that people always ask Nolan how I'm doing, but rarely ask him how he's doing. Although he may not physically be sick like me, he is going through this emotional pain and suffering just as much as I am, if not more! Same goes for our parents, siblings, and close friends. So, while it is completely understandable to ask my family and close friends how I'm doing, I'd encourage you to ask them how they're doing as well.

God created us as relational beings and commands us to be there for others in times of grief. It may be the nice thing to do, to be there for others in times of need, but it's also a great reminder that we're called to do so by God. This will not only strengthen your relationships with your loved ones, but it will also show you care and clear away the doubts in their minds that others don't care about their situation. This is such a great reminder that even in the valley's of life we are not alone. 2 Corinthians 1:3-4 says, "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too." It's really so humbling, yet amazing that Christ suffered for us and because of this can relate to us in our own suffering. In a perfect world we wouldn't have to face the difficulties of life, but unfortunately this isn't the case, so we might as well do all that we can to be there for others in times of need. You never know how much of a difference that simple text, card, or conversation can make.