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.

No hair, not fair

There's somewhat of a stigma when it comes to being bald in our society. No one wants to be accused of balding, let alone look like Mr. Clean, especially at a young age, but if you're a woman, being bald is just out of the question! I specifically remember watching the movie, My Sister's Keeper when I was in high school and thinking, “If I had a sister who had cancer, would I be willing to shave my head?" Followed by the thought, "Good thing I don't have a sister, cause I would never want to shave my head!!!" As petty as this sounds, I think it's a much more common thought than people like to admit. I don’t think I personally know one woman who would voluntarily shave her head and lose all her hair. And I'm not talking about a stylish buzz cut or shorter hairdo. No—hair completely gone, all you're left with is a shiny egg head. Not sure why my memory of watching My Sister's Keeper so many years ago sticks in my head, but after receiving a very unexpected cancer diagnosis myself, I had to kind of laugh at the irony. Who in their right mind, ever thinks they're going to have to go through chemo and lose their hair, let alone receive a cancer diagnosis, especially in their 20's (or ever)?! No one!!! I say all of this because today marks one year since my last day of chemotherapy—one full year of hair growth!!! So, I thought it would be fitting to talk about hair loss with chemo. The good, the bad, and the ugly (yes, there's a tiny bit of good that comes with hair loss).

I'd like to say that losing my hair was just another part of having cancer, but it's so much more than that! I have vivid images in my head of the moment I realized chemo had started to take my hair. I was trying to be proactive and buy a wig in advance that matched my natural hair color and style, and while I'm sitting in the salon chair at the shop, the store owner casually goes, "oh, looks like you're already starting to lose your hair!" The way she nonchalantly mentioned it as she was handing me wigs to try on still boggles my mind. Yes, I was at a wig store for a reason, and yes, she works with balding people all the time, but you cannot just casually tell a 26 year old woman, "oh, looks like your hair's already starting to fall out" and act like it's nothing. I remember sitting in that chair, looking in the mirror at myself, and trying to hold back tears with everything in me. It's one thing to know, maybe even expect, that your hair is going to fall out, but it's another thing to actually see it happening right in front of you for the first time and try to process it. From that moment on, I knew that losing my hair was going to be excruciatingly difficult and painful for me.

So if you're going through chemo, and experiencing similar feelings, please know you're not alone! I know for me, it took weeks, maybe even months to fully mourn the loss of my hair. It's no joke when I say I think I cried the most consecutive days in a row when my hair was falling out. There's a chance I cried about my hair more than when I originally received my diagnosis. This may seem crazy to some people, but let me explain some of the reasons why this experience was so painful. Number one: the reality of having cancer finally hit me. Although the first few weeks and months after receiving a cancer diagnosis contain many emotional ups and downs, losing my hair made me feel like a true cancer patient. Yes, I'd already been to what felt like a million appointments and counting, as well as had multiple scans, pokes, and prods but up until this point, when I looked in the mirror, I still saw myself. After that noticeable first clump of hair falling out in the wig store, I was afraid to look in the mirror. Not only was I afraid of what I'd see physically, but I was also afraid of the new reality that was my life. Number two: I felt like I was losing a part of who I was. You may think, "oh, it's just hair, and people cut their hair all the time, so why is it such a big deal?" But if you grow up and have had long, beautiful hair most of your life, it's a huge change!! Also, not trying to toot my own horn, but I had people compliment me on my thick, long, curly hair all the time! Random strangers would come up to me and comment on how lucky I was to have such gorgeous hair, and while I appreciated their kind words, I think it made losing my hair that much harder. It felt like a big part of the way people identified me was being taken away, and I thought people weren't going to look at me the same way again. Rather than being a normal looking girl, who happened to be blessed with nice hair, I was now going to be looked at as a bald girl and could immediately read peoples' thoughts as they labeled me as someone with cancer. Number three: I actually liked my hair! It made me feel beautiful, and without it, a lot of my confidence was lost.

About a week after my experience at the wig shop was when my hair really started to fall out, and I mean clumps and clumps of hair everywhere. Every time I took a shower, I sobbed because I could see a part of me being washed down the drain. In fact, it was so emotionally painful for me, I could not get myself to shower. So, in my extremely vulnerable state, I cried as my loving husband, Nolan, helped shower me and wash what was left of my hair. It was at this point when I knew something had to be done. I couldn't keep slowly watching my hair fall out each day. I needed to rip the Band-Aid off. So, with tears, I told my family I needed to shave my head to get the pain (both physically and mentally) over with.

I will never forget how, in the spur of the moment, my only friend in the area (at the time) came running over to be with me and support me in this emotional time. With the help of Nolan, my parents, and my friend, Murphy, we shaved my head. I felt so exposed and weak, but I had my loved ones there embracing me and holding my hand, telling me it was going to be okay.

This may seem completely depressing, and while it is, there is more to the story (this is where the "good" of hair loss comes in). A couple weeks back, before chemo started to cause my hair to fall out, my mom had the idea to invite some of my friends over to hang out, and to celebrate me as I cut my long hair, to a shorter length above my shoulders. I loved this idea and asked some girls if anyone would be interested, and of course, my amazing girlfriends said yes in a heartbeat! One of my friends had the idea to have the ladies dye their hair pink in support of me and breast cancer. I was so flattered by this and loved the idea. My sweet husband, brothers, and dad all wanted to join in on the fun so they shaved their heads in support as well. It was one big hair dyeing, head shaving party! And let me tell you, I felt so loved and supported by some of the people I love most in this world. I will never forget how fortunate I felt in that moment, that I had multiple people in my corner who were there for me and willing to do whatever it took to make me feel better. While I realize I am extremely blessed with the support system I have, I would recommend to anyone going through chemo to rally your people to be there for you. Whether or not they shave their heads is up to them (no, I did not ask my amazing family to do that, they offered), but just having some friends or family around for moral support is so helpful. It was also recommended to me to cut my hair shorter before I started chemo because not only can having long hair cause more physical pain when your hair is falling out but it can be so helpful to ease yourself into the idea that you're going to look and feel a whole lot different. Another thing we did to celebrate this moment was take some before and after pictures (shown below). I'm blessed with a photographer as a mother so while that may help, even just taking a few photos to reminisce on the day is a great idea.

While cutting my hair shorter did not completely take away the pain I was about to experience in a few short weeks when my hair would begin to fall out, it still helped me feel as though I was in control of something in my life, when there was so much that was out of my control. This is one of the hardest things about having cancer - everything is out of your control and you feel so helpless. There is nothing you can do to make your life go back to normal. Throwing a hair-cutting party with friends was a great way to take control of something, and it reminded me how fortunate I was to be blessed with such amazing people in my life. So, if you find yourself having a hard time before you start chemo (which you will), or while your hair is falling out (which you will), or while your eyelashes and eyebrows fall out (which you will), or after you've been bald for a few months and you're just missing you hair (which you will), just remember that you're not alone in these feelings. Chemo sucks and is exhausting, difficult, and lonely, and on top of that being bald sucks! But you can get through, especially with the help of family and friends. And then one day you'll look back (like me), and see how far you've come, and how much stronger you are because of what you've been through. And you'll see a photo of yourself a year ago today—thanks Facebook and snapchat memories—where you're completely bald, and you'll look at yourself in the mirror and see how much your hair has grown, and how much you've grown and smile

Before...

Cutting my hair

Shaving Nolan's head

Dyeing our hair pink!

After!

Last day of chemo!

Done with chemo!

A full head of hair

One full year of hair growth!