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!

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.

Cancer doesn't stop after chemo

Cancer and chemotherapy. These two phrases tend to go hand in hand, but just because someone has completed chemo, doesn't mean they don't have cancer anymore. While you may think to yourself, "yes, I know chemo doesn't always cure cancer," I wanted to bring this to your attention because it can sometimes feel as though others have forgotten I'm still in treatment. Don't get me wrong, I'm consistently blessed by my amazing family and friends, but now that it's been over a year since my diagnosis, I've definitely noticed the cards, care packages, and flowers have slowly started to dwindle away. While I realize this is just a part of life when it comes to hardship, I want to vocalize for my fellow cancer thrivers and me that our lives are permanently impacted by a cancer diagnosis. With a stage IV diagnosis, you don't just stop treatment after chemo. In fact, I will be in treatment for the rest of my life.

Receiving chemo was one of the most difficult things I've ever done. I hope I never have to experience the side effects of chemo ever again including the extreme fatigue, appetite suppression, nausea, heartburn, and hair loss. It truly kicked me in the butt. I remember after losing my hair, feeling like a true cancer patient. There was something about walking into a public space, feeling as though everyone was looking at me and automatically knew I had cancer because of my lack of hair, or the headscarf I was wearing. I hated this feeling, and remember fearing that people would first identify me as a sick person, or someone with cancer.

While I pray I never have to relive those moments, there is something about looking like a cancer patient. People were able to tell I had cancer without me having to say a word. And now that my hair is growing back (yay!!!), strangers can no longer tell that I'm going through the toughest fight of my life. They just think I choose to have short hair! While I'm overjoyed that my hair is growing back, my life is still forever changed. There is not a day that goes by where I don't have to worry about what the future may hold, or what new injection or medication I'm going to have to try out next. Just because I'm generally feeling well, and I don't physically look like I'm in active treatment, I still face challenges on a daily basis. Almost every week I have to go to the cancer center to get my blood drawn, receive injections, or meet with my oncologist. On top of that, I need scans every three months to check on the growth of my cancer.

While having stage IV cancer definitely requires more medical attention, I've talked to plenty of women who've had a lower stage of breast cancer and are now in remission who still experience these same feelings. While they may not have as many doctors appointments as me, many others are still on medications for years, and in the back of their minds are wondering, "does this pain I have mean my cancer is back?" or "how long do I need to be on a juicing diet?"

The point of this post is not for pity. It is to raise awareness that having cancer isn't only difficult at the beginning, but is burdensome for the rest of your life; And it can be really difficult once the realization hits that everyone else's lives will move on like normal, whether or not they can help it, and that my life is forever changed and includes continual hardships and stressors despite the amount of time that's passed.