Living beyond the diagnosis: Five Years with metastatic breast cancer

It’s been five years since I was diagnosed with breast cancer. 1,825 days of poking, prodding, procedures, and more importantly, persistent prayer that I will continue my life here on earth as long as possible. Though much of these past five years is a blur due to chemo brain, stress, and trauma, I will never forget the initial diagnosis — the shock, denial, and fear — and the day when my supposed stage II diagnosis was actually stage IV: terminal, metastatic, a death sentence. 

As I approach my five year “cancerversary,” it’s hard to process the million thoughts running through my mind. Five years with a stage IV diagnosis is not something to be taken lightly. It’s a huge feat that I’ve made it this long, especially when you consider the stats: only 32% of people diagnosed with metastatic breast cancer will live longer than five years. I am beyond grateful I’m still here, and not just surviving, but thriving. Although the last two years have been extra encouraging, the first three years of my diagnosis were difficult beyond words and stretched me physically, mentally, emotionally, relationally, and spiritually. In five years I have accomplished more than I ever would’ve imagined, learned some hard but valuable truths, lost dear friends to cancer, and acquired new insights on life. But all of these moments — the good, the bad, the painful, the hopeful, and everything in between — have shaped me into the person I am today. 

Things I’ve done since my diagnosis

There are so many things I’ve attained post diagnosis that I probably would’ve never done if it weren’t for cancer. 

• Nolan and I have prioritized living life to the fullest and making sweet memories together. We’ve traveled the world together and seen places we never could’ve imagined seeing at this point in our lives. 

• I have chosen vulnerability over fear in so many aspects of my life. I have shared my story with all of you — the good, the bad, and the ugly — in hopes that someone else would learn something from my life or find hope in my story. 

• I have been a guest on a podcast, and I sang the national anthem at a Detroit Red Wings game. I genuinely don’t think “pre-cancer Lauren” would’ve had the guts to do so. 

• We bought a house! This is something we never thought we would be able to afford post diagnosis, but God provided for us! We love having a place to call home, especially after moving so many times and feeling so unsettled. 

• I have prioritized my faith more than ever, and have tangibly seen how a life in Christ is full of blessings upon blessings amidst the challenges of life.  

Things I’ve learned 

The valuable life lessons cancer has taught me.

• I can handle more than I ever imagined. In the first few weeks of my diagnosis, I vividly remember wondering how I was going to make it through each day. How would I handle chemo, medical procedures, constant blood draws, isolation, and side effects from medication? I honestly still don’t fully know how I made it through so much! Though it was far from easy, I am so proud of myself for remaining strong and pressing on, even on the difficult days… and there were plenty of those to go around. Long story short, I’m tough and resilient. 

• Our community is top notch! A big part of why I’m still here today is because of our dear families and friends who have supported us so well. Although it is very humbling and at times awkward to accept help, we now understand the value of close community and the need to rely on others for strength. Thank you endlessly for your prayers, financial support, and tender care over the last five years.

  
  

• Clinical trials are amazing! Not only are they amazing, they are literally saving lives. As a former medical professional, I thought I understood the value of medical research, but being on the other side as a patient who is desperate for innovative medicine has taught me how vital research truly is. It has been over two and half years since I was told we were running out of treatment options. Hearing that all I had left was clinical trials was daunting to say the least, but I have been pleasantly surprised by the success of new research. I am so impressed and grateful for the unnamed drugs I take everyday that are prolonging my life and shrinking cancer cells unlike any other past treatments. 

  
  

• God can surprise us! After praying for healing for years and experiencing the opposite time after time, I genuinely thought healing was not a part of God’s will for my life. In recent times, by the grace of God, this does not seem to be true after all. I still have a hard time believing the turn of events in my life! God is so good! I will never stop praying for the miracle of complete healing, and I trust that God is able to do more than I could ever imagine! 

Things I’ve lost

The things cancer has taken away from me that I will mourn for the rest of my life.

• One of the painful truths of being diagnosed with cancer is that you will most likely find friendship within the cancer community, only for it to be taken away because of the horrible disease you have in common. I am beyond thankful for the friendships formed with my fellow cancer warriors, but having to lose multiple friends to the same disease I hold is not only heartbreaking, but also uncomfortable. It’s an unnerving reminder of the inevitable: that most likely, cancer will take my life one day. It’s also not fair that I’m still here, and other people who are just as deserving to be here are not. I think especially of Sierra Zylstra, Kelli Si, and Pastor Pat Schwenk. I miss all of them so much, but look forward to the day when I will see them again. There are countless other women who I’ve met online through different support groups for young women with stage IV breast cancer who have passed away, and every time I hear of one of them passing away, I am deeply saddened.

  
  

• In 2022, I had my ovaries removed in hope that having as little estrogen in my body would save me from the estrogen-feeding cancer cells in my body. While I still believe without a doubt this was the best decision for my health, the myriad of side effects that come without having ovaries at such a young age are quite unpleasant. Not only has this affected my ability to carry a child, but I also experience things that are supposed to be reserved for women in their fifties, not someone in her late 20’s and early 30’s. This includes hot flashes, poor body temperature regulation, hair thinning, weight gain, increased osteoporosis risk and more. Who knew that having your ovaries removed would affect daily life so much.   

  
  

• The inability to carry a child is one of the biggest losses I have experienced since my diagnosis. Nolan and I continuously grieve the hopes and dreams we once had for our life together. I often say this loss cuts deeper than having cancer itself. 

• It struck me the other day as I was thinking about living with cancer for five years — I will never get to live a life without cancer. In other words, I have lost the ability to live a cancer-free life. It’s a strange feeling, knowing a stage IV diagnosis never goes away. While I hope and strive to live many more years, with modern medicine it’s currently impossible for me to ever become a “survivor” and be deemed cancer free. With new medical research and technology, a cure may eventually be found allowing this to be possible, but I miss being able to say I’m a healthy individual. I miss what it feels like without cancer defining a big part of my life. 

Things I’ve gained

The positives that have come with a stage IV cancer diagnosis.

• As mentioned above, I have found true friendship through the cancer community. It’s hard to imagine a life without meeting those wonderful people who have inspired and encouraged me to persevere even when life is tough. We have also been uplifted by our families, college friends, high school friends, church community, and even strangers! I am so appreciative of the gift of friendship!

  
  

• Cancer has given me a whole new outlook on life. I will never take a day for granted again. Although we will all die one day, being diagnosed with something as heavy as cancer makes death feel that much more possible. This can be an exhausting way to live, until you realize that every moment counts, and wonderful memories can be made each and every day. It also has made my desire for heaven that much greater. I long for the day when my body will be healed of this disease, and I no longer have to fear what the future holds. This perspective, while unique, is something I truly value and have come to appreciate.

  
  

• Most importantly, five years with cancer has strengthened my faith. I have always been a believer, but my faith has been tested and become better for it. Just as growing and stretching takes time, pain, and hard work, God has meticulously shaped and molded me into a better version of myself. In the lowest lows of my life, He has been beside me, strengthening me and guiding me to where I am now. A place where I trust Him with my life completely, no matter what tomorrow looks like. 

Although the future is uncertain, I am beyond thankful for life — my almost 32 years of life, including five years with cancer. Regardless of poor health, I will continue to live each day with gratitude for the breath in my lungs. I will continue to take to heart the life lessons living with metastatic breast cancer has taught me. I will continue to remain hopeful for a miracle. And I will continue to trust that the unexpected can be used for good, even if it’s cancer.

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.