Beyond the pink ribbon

It's currently the end of October, also known as Breast Cancer Awareness Month. The pink ribbons have been flying high, and the breast cancer campaigns may still be advertising for their fundraisers, but this won't last for long. Soon it will be November and next thing you know, everyone will be focused on the busy holiday season. While this is completely normal and acceptable, I've come to appreciate Breast Cancer Awareness Month. It is such an inspiring time for many, bringing about a sense of hope. But after being diagnosed with metastatic breast cancer (MBC), I have learned from experience that although breast cancer awareness month has good intentions, there are definitely some things that are unproductive and can put a sour taste in the mouths of those of us with MBC.

1. Pink ribbons don't do anything - They might raise awareness, but the money should be going towards actual research, not towards creating pink products. Many organizations spend money investing into pink products for the month of October, but rather than throwing money away to "raise awareness," businesses should put their money where their mouth is and actually donate to campaigns that raise money for breast cancer research, specifically stage IV.

2. MBC is not represented by the pink ribbon - Lower stages of breast cancer are considered curable (unless the cancer comes back) whereas MBC is incurable. Because of this large distinction, the MBC ribbon contains teal, green, and pink. This is why my blog includes these colors! You can read a little more about this if you head my home page.

3. Many breast cancer campaigns don't donate money to research MBC - Less than 5% of all funds raised for breast cancer are actually focused on saving the lives of those of us with MBC. If more money was raised for actual research this would most likely result in finding a cure for all stages of breast cancer, or at least allow MBC to become a chronic disease rather than a terminal disease. METAvivor is one of the few organizations that donates all funds raised to MBC research. This is why I frequently advocate for this organization.

4. There is a constant reminder that breast cancer exists - The way that breast cancer is nonchalantly discussed during October can be really difficult for those of us who are actually diagnosed with the disease. I completely understand that there is a need for awareness so others realize that breast cancer, specifically MBC, is a real issue, but frequently reading the statistics about MBC is honestly depressing. The fact that the average person with MBC lives only 2-3 years is a terrifying thought. It's already been almost 2 years since I was diagnosed, so thinking that based on averages I only have one year left to live is extremely difficult to think about and be reminded of on a daily basis.

5. There is a focus on survivors - Something that is celebrated during breast cancer awareness month is the many men and women who have beaten breast cancer and are currently in remission. I greatly rejoice with those who have overcome breast cancer, but the focus on survivorship can be frustrating because MBC is not curable. In this day and age it is impossible to be in remission from MBC, so I believe there should be more of a focus on those of us who are thriving despite facing an incurable disease, even if we haven't necessarily "beaten cancer." Sometimes the common phrases that are so frequently spoken around this time such as "You can beat this," "You're so strong," or "Cancer's got nothing on you" can make me feel like a failure. I know people have good intentions when they say these things, but in reality, those of us with MBC will never be cancer free. It also is disappointing to hear these phrases when many people in my cancer community have died from MBC because I know they did everything they could to survive and live a long and happy life.

Now, besides all this negative stuff, lets focus on some of the positives that come with breast cancer awareness month:

1. Certain organizations, such as METAvivor, are campaigning and raising money for MBC - As stated above, more funds need to go towards MBC. "Stage IV needs more" is a common phrase you might here at this time of year and is a great reminder about the necessity of researching MBC to be able to find more life saving or even life prolonging drugs. METAvivor has done a great raising awareness for MBC and has raised over $350,000 for MBC this October. It is because of organizations like this that I have hope that I will one day be able to beat this disease.

2. Having a month designated to breast cancer gives those of us with breast cancer a great platform to share our stories and educate those around us - If you follow me on social media, you will know that I've definitely taken advantage of October to share things that are close to my heart, as well as educate those around me about the importance of donations to MBC research. In case you missed it, I was chosen by METAvivor to share a bit of my story as well as some important things I want my family and friends to know. You can watch it here! https://www.instagram.com/p/CkBkVBVg81y/

3. The community comes together - This is one of my favorite things about October. From fun runs, to fundraisers, seeing people come together for a good cause makes my heart happy. It is also a great reminder of the support I have in my community.

4. Progress for MBC awareness specifically is made - This year, I decided to volunteer with METAvivor to help make a difference. My specific role was to compose a proclamation and write a letter to the Governor of Michigan to make October 13th Michigan's Metastatic Breast Cancer Awareness Day. I am proud to say that my hard work paid off and it's official. This is just one small and personal example, but it gives me hope knowing that every small step adds up and is making a difference.

So, while Breast Cancer Awareness Month has definitely provided opportunities for progress in the breast cancer world to be made, there is still room for growth. I hope that together those of us with breast cancer as well as those who have not personally been affected by this disease will continue to raise awareness and donate to organizations in the months to come to find a cure!

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.