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.

When the mountain seems immovable how do I still believe?

Have you ever been in a situation where you feel that life will never get better? That there's no hope left? This was me about a year ago. My life was completely turned around after receiving a stage IV breast cancer diagnosis at the age of 26. For awhile, all I could think about was that once this disease is deemed stage IV, or metastatic, it's incurable, a death sentence waiting to happen. While I pray I'm an outlier in the life expectancy statistics for metastatic breast cancer (three-five years after diagnosis), there is still a chance I'm not. As you can imagine, this is not fun to think about. Yet here I am, over a year later, surviving and thriving as I try to live my life as best as I can while facing a terminal illness. And while I definitely have my days of doubt, frustration, sadness, and hopelessness, I've found that I can still find happiness in life because there are many wonderful things I've been blessed with. This often surprises people. Whether or not they're facing a terminal illness themselves, they wonder and ask me these questions. How are you so strong and joyful all the time? How do you have faith when your situation is so distressing? How do you believe that God is good when he doesn't heal you? While the answers to these questions are complicated and require a deep trust unlike any other, I can say without a doubt that the one thing that has been made clear to me throughout my entire life, and especially through my crappy cancer diagnosis is that God is good and faithful.

One tangible way I know this is because I've experienced strength and peace unlike any other. People frequently tell me I handle my situation so well, and while I take these words as a compliment, I know the strength I'm portraying is something I could never muster up on my own. When I think about the first few weeks and months after my diagnosis, I think about the horrible thoughts and feelings I was experiencing on a daily basis. The cries of extreme disappointment, hurt, and anger. The questions of why and how did this happen to me. The frustrations of how unfair my situation is. The feelings that I was completely alone and that God had forsaken me. There were flashes in time that seemed to freeze and will stick in my memory forever because of the raw emotion and despair I felt in those moments. I specifically remember shortly after moving back to Michigan and seeing my Grand Rapids' friends for the first time since diagnosis. At that point in time, I had just found out that there was a questionable spot on my liver according to my PET scan. Up until this point I was just trying to get over the fact that I was diagnosed with breast cancer at 26 years old, but then on top of that, there was the chance that my cancer had spread. I remember sitting in my friend's kitchen, mourning this news with some of my best friends. Not only was I completely devastated, but I felt as though my body was failing me, and all of the unique qualities that make me a woman were being taken away from me and causing me extreme pain. Expressing these thoughts may have been some of the most vulnerable words I have spoken, but I knew I needed my friends and could rely on them to help support me and pray for me. Looking back, I'm so relieved I never have to relive those emotional moments. Many people had told me things would get better, and that the first few months after diagnosis were the hardest, but I didn't believe them. How could my life get better when I was diagnosed with a terminal illness? With stage IV cancer.

I am happy to say they were right. It does get easier. While time definitely helps, I know that the peace, strength, and sense of hope I've come to experience is no coincidence. The Lord has truly shown Himself to me through these difficult times as I've learned how to rely on Him completely. I have never spent as much time in prayer or in His word as I have over this past year. I hate to say that it took me being diagnosed with cancer to become closer to the Lord than ever before, but it's true. In fact, I've come to learn that even though I will never fully understand why I have to face this awful disease, I know that God has put me through these trials for a reason. Through these struggles He has revealed to me how faithful He is. He has never left my side, and it is because of His presence that I am able to experience peace, strength, joy, hope, patience, grace, and so much more. With that said, there are definitely still days where I feel down, disappointed, and just plain mad about my situation, but I'm now able to recognize that there can still be good days among the bad ones where I feel at peace about my situation. I truly could not live so gracefully with stage IV cancer without the Lord. So, when people say to me that I'm so strong, or I'm handling my situation so well, I know they are seeing the Lord sustaining me, and working through me.

I also know the Lord is good because of what the Bible tells us. Time and time again we see examples of God's faithfulness to His people. Although it can be so easy to read a story and see God's faithfulness from the outside, I can guarantee that the people in the Bible were experiencing some of the same emotions we do when God's timing and plans don't align with ours.

One of my favorite examples of this is the story of Moses and the Israelites as they attempt to flee from Egypt's evil ruler, or Pharaoh, and later travel through the wilderness. If you aren't familiar with the story, here's a brief synopsis: As an adult, Moses was chosen by God to lead the enslaved Israelites out of Egypt. Moses has an established relationship with Pharaoh because of his upbringing and attempts to reason with Pharaoh to "let his people, the Israelites, go" over ten times. Each time, Pharaoh refuses to free the Israelites. Finally Pharaoh's heart softens and he lets the Israelites go free, but even after they are freed, they wander in the wilderness to the land God promised them for 40 years. Can you imagine the Lord telling you that you would be freed as well as brought to the promised land and having it take 40 years?! Not to mention there were many hardships along the way such as Pharaoh making the work harder for the enslaved Israelites, crossing the Red Sea, and wandering in the desert without water. I can only imagine how frustrated, scared, and doubtful Moses and the Israelites felt. And yet, God was faithful and lived up to His promises, even if it took what seemed like forever.

As I reread this story and prepped to write this blog post, I noticed that God tells Moses over three times, "I am the Lord. The God of Abraham, the God of Isaac, and the God of Jacob" (Genesis 2:24, 3:6, 3:15-16, 4:5). Now, why is this significant? I can guarantee that as Moses is facing his doubts and fears and questioning the plans the Lord has for him, that the Lord knows Moses needs to be reminded of His faithfulness. Although, it may have seemed impossible to lead the Israelites out of slavery, God reminds Moses that He was faithful to Abraham, Isaac, and Jacob, and with each of these stories, God fulfills his promises to each individual in His own time. Not immediately!

This really hit home for me. There have been so many times when I've questioned why the Lord is putting me through these hardships and why He hasn't healed me, but I'm reminded of the countless stories of hardship in the Bible and how God never forsakes His people, and is there to provide for them, strengthen their spirits, and uphold them. The best part is, our God today is the same God he was back then, and he will fulfill His promises to us. Hebrews 13: 5-6 says, "Never will I leave you; never will I forsake you. So we say with confidence, 'The Lord is my helper; I will not be afraid.'" Even when life deals us a bad hand, we know that the Lord knows what He's doing and can use our stories for good. Isaiah 55:9 says, "For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." This can be so hard to comprehend as, oftentimes, we think we know what is best for our lives. But ultimately, we do not know what the best path is. Even though it may be difficult, if you trust the Lord and remember His promises to you and me, you will experience His love and faithfulness. If you are having a hard time doing so, I encourage you to open your bible and read the stories of Moses, Abraham, Isaac, or Jacob, as well as countless others.

You may still be wondering: if God is faithful and keeps His promises, then why are all of these terrible things still occurring in the world such as war, division, poverty, and disease. It is so hard to understand why a good God would allow suffering, pain, or a complete wrench in your perfect plans. Especially when we read in Psalms that God will give us the desires of our hearts (Psalm 37:4). While we may think of things such as wealth, peace, a good job, or good health as the desires of our hearts, these things will not genuinely fulfill us. They might bring us joy and be a nice addition to our lives, but ultimately we're going to keep desiring more and more and still be left feeling dissatisfied. The Lord is the only one who can truly fill this void we so often experience. So when we read "the desires of our hearts will be given to us," we learn that God is telling us to seek Him first and then we will be completely satisfied.

In other parts of the Bible, we also see that God doesn't promise us a life of ease when we choose to follow Him. In fact, the Bible tells us, "We must go through hardships to enter the kingdom of God," and that "In this world [we] will have trouble" (Acts 14:22 and John 16:33). Although this may sound discouraging, we must remember that God puts us through trials and hardship for a reason. The reason being, that we will cling to Him ever so tightly, and as a result become more Christ-like. Scripture goes even further and tells us to "Consider it pure joy my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance" (James 1:2). It may seem somewhat nonsensical that God expects us to find joy in suffering, but when you accept Christ as your Lord and Savior, you will find a peace and contentment unlike any other when you trust in Him. Going through trials forces us to strengthen our faith because we must choose to rely on Christ that much more, especially when we are at our breaking point. In other words, when we are suffering and at our worst, Christ will uphold us and sustain us. As 2 Corinthians 12:9-10 says, "My grace is sufficient for you, for my power is made perfect in weakness... That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions. For when I am weak, then I am strong." How amazing is this!?

So, when I'm asked the difficult questions written at the beginning of this post, I can say with confidence that even in the midst of hardship, the Lord is my strength and keeps his promises to me regardless if I'm healed or not. In addition, while we may be waiting for God to answer our prayers, unlike many characters in the Bible, we don't have to wait for the coming Messiah, because Jesus already came down to earth to save us. Because of Christ, we have been offered eternal life with Him some day where we won't have to experience any of the pain of this world. This promise alone gives me so much hope, because although I may not know what my future here on earth looks like, I know where my future lies and for that I am so thankful.

Lastly, here are some links to a few songs if you're in need of encouragement. They've been very helpful and relatable to me in my times of hardship.

Songs

Faithful God - I am They https://www.youtube.com/watch?v=zUaS1Y-jyMk

Same God - Elevation Worship https://www.youtube.com/watch?v=LawxIZE9ePE

Even If - MercyMe https://www.youtube.com/watch?v=B6fA35Ved-Y

Trust in You - Lauren Daigle https://www.youtube.com/watch?v=qv-SXz_exKE

Give Me Faith - Elevation Worship https://www.youtube.com/watch?v=N9w6284vC1w