Seemingly Harmless Topics That Can Become Harmful

Coming up with a title for this blog post was quite difficult. The topics I've listed below have become sensitive to me, especially since being diagnosed with cancer, but I know these topics can cause pain to so many other people who are facing completely different life challenges. Everything I share below is from my personal experience, but I do not want to exclude friends and family who may feel similarly towards these subjects. I believe what I discuss below only skims the surface of some of these deep conversations, but I did my best to explain in a short manner some topics that have recently felt like a gut punch.

1. Bashing your physical appearance with statements like..."My hair looks so bad today," or "I look so gross in that picture." One frustrating thing about being a woman, especially in today's culture, is the constant focus on physical appearance. As women, we have become so critical of our own appearances whether or not we like to admit it. I have heard the phrases above numerous times from pretty much every woman I know, including myself. It's almost a habit, or something we feel we have to say if we don't look "perfect." While these phrases bothered me minimally before, I have to admit hearing these things brought me a lot of pain after being diagnosed, especially during chemo. There were multiple times when people stated how terrible their hair or eyebrows looked in that old picture, or even just complimented someone else on their luscious locks or new, cute hairstyle. Meanwhile, I'm in the middle of chemo with little to no hair and really struggling to feel beautiful. I've shed a lot of tears over the past year, but I think the time I cried most - every single day - was when my hair was falling out. I believe in general we should make an effort to minimize negative talk about our bodies, but I want to urge you to be especially aware of this type of talk in front of someone with cancer. You never know how much someone is struggling internally with their physical appearance, and the last thing I wanted to hear is how "bad" someone's hair looks, when I was wishing so badly I could just have hair.

2. Discussing pregnancy/children constantly... While it may seem like second nature to talk about your baby or kids this is definitely a sensitive subject for those of us with cancer, as well as many other women struggling with infertility. Because I was diagnosed at such a young age, I had to harvest my eggs and freeze embryos with less than a month's notice because I needed chemotherapy. Chemo often damages your ovaries and eggs, so it is quite common for women who do not have children yet to go through this process. While I was fortunate and had success with one round of egg harvesting, because my cancer is stage IV, I most likely will never be able to carry my own baby because I will be on medication that prevents this for the rest of my life. I also recently had surgery to remove my ovaries because my cancer is hormone positive, and my young and healthy ovaries were releasing too much estrogen that could cause my cancer to grow. While I know having this surgery, as well as having stage IV cancer is pretty much a guarantee that I will never be able to carry my own children, this is a hard pill to swallow. Especially, because my husband and I would probably be trying to have kids right now if our circumstances were different. Since we most likely will not be able to have our own kids, it can be very difficult and triggering to hear about other people's pregnancies, newborn babies, or even toddlers when that is something we want so badly but will most likely never be able to have. I also personally know multiple women who have opened up to me and struggled with infertility or losing babies. Even though the reason they may not be able to have kids is different from mine, they tend to experience the same emotions and pain that I do. On the other side of the spectrum, I have spoken with many women with metastatic cancer who already have kids, and know they face their own struggles. Having to think about a future where their children may not have a mother is so heartbreaking, so I urge you to just be extra sensitive when discussing your kids. Comments such as "I wonder where Bobby will go to college" or "I'm so excited for Jane to get married" can be triggering if you're wondering if you'll even be around to see that day. This leads me to the next topic…

3. Frequently discussing future plans and how years from now this will happen... I recognize it is completely normal to talk about the future, but I would encourage you to do so less frequently with those facing a terminal disease. One of the hardest changes in my life since diagnosis is being unable to plan for the future. It doesn't help that I'm a planner to begin with. I have truly had to learn how to live days to weeks at a time and it's been so difficult. Even though I may make travel plans, for example, in the back of my mind I am always wondering if I will physically and mentally be okay to actually participate in those plans. Nolan and I also have had to completely change our plans multiple times since diagnosis. Unfortunately, that's kind of how life goes, and it's no fun. One example of this is we were preapproved for a mortgage and put an offer on a house back in the fall of 2020. We obviously didn't get the house, but our plan was to buy a house in the next few months once we completed travel nursing. I received my breast cancer diagnosis in December 2020, and since then so many things have changed. I had to stop working, and as a result, we could no longer buy a house like we had been planning on. I share this information to give some perspective. It's not that we never want to hear about others' future plans... I'd love to know if you're moving, getting a new job, or planning on having kids down the line; but if it is a frequent point of discussion, it can be difficult to take in. I try not to compare my life to everyone else's, but it's so hard not to, especially when I'm craving a sense of normalcy. Along with talking about future plans, some common phrases that have stung to hear are, "I can't wait for 40 years from now when we'll all be old ladies together," or "having your own house is the best.” I know no one says these phrases with ill intent! I just want to raise awareness so others can be sensitive about these subjects.

All this being said, the last thing I want is to make people feel guilty about things they've said to me in the past, or for others to feel guilty when their lives continue to move forward and their good friends' or family members' don't. The goal of this blog post is to somehow try to find a happy medium where these topics are still discussed, but minimally. I also recognize there is a lot I need to work on including not becoming envious of others. This is so difficult, especially in today's society. There are so many expectations today that can make you feel unsuccessful if you don't achieve every item on the list. As a female you must be beautiful, find a husband before you're too old, and have kids "on time," all while working a full time job. It all sounds so silly, but it's true, and I know I'm not alone in this.

One realization I've made through my cancer hardships is that everyone has a unique story, and even though it may seem like some people have it all - the looks, the house, the kids, the job - I need to do my best to avoid comparison as it NEVER helps the situation. Along with this I have been trying to learn and remember that while many people around me seem to be "ahead in life," God hasn't forgotten me - He is still writing my story, just in a different way. It may be the complete opposite of what I ever imagined and that can be so tough to handle, but deep down I know and trust that my story will be used for good.

the complications of having cancer during a pandemic

2020. A feeling of hope for the new decade until it became known as the year the pandemic hit. One of the most devastating years for so many people. As a nurse, I took care of numerous people who lost their lives to Covid-19, and it is tragic that their loved ones experienced such loss. I will never forget working as a travel nurse in communities needing extra help to combat the craziness of Covid-19. I will also never forget the end of 2020. My husband, Nolan, and I had just celebrated Thanksgiving together, and then a couple days later, felt sick and ended up testing positive with Covid. After quarantining for ten days in our tiny studio apartment, I remember going back to work and feeling grateful that we didn't get too sick, as well as looking forward to the new year; after all, 2020 was the worst year ever... right? And then to our dismay, I ended up being diagnosed with breast cancer on December 22nd, 2020, therefore, making 2021 top 2020 for worst year ever.

As a nurse, I had already seen the despair and frustration that patients and their families experienced while patients were admitted to the hospital with severe illness and unable to have any visitors. My heart broke for them as they were all alone, sicker than ever, afraid for their lives, without the presence of their loved ones. And then the tables turned, and I became the patient who was alone and afraid, wishing my husband could be there just to hold my hand to get me through each appointment. Although I was fortunate to have a mild case of covid-19 and didn't require hospitalization, I had my fair share of appointments during the pandemic when strict restrictions were in place. Because of my rare circumstances in being both a nurse and a patient during the pandemic, I figured I should share my unique perspective.

After working with strictly Covid patients and hearing only about the pandemic in the news, I honestly somewhat forgot about the many other illnesses and diseases that patients were combatting, and I think it's safe to say a lot of the world did as well. Even though I was personally involved and affected by Covid, and also recognize its significance, I remember feeling like nothing else in the world mattered when I received my diagnosis. Out of the blue, I was diagnosed with breast cancer at 26 years old. Not only was this extremely shocking given my age and health history, but I think anyone would agree that receiving a cancer diagnosis is not something you ever expect to receive, let alone have to go through somewhat alone.

I will never forget going in to get my "stat" ultrasound and being told Nolan could not come to my appointment with me because of visitor restrictions. As a nurse, I was well aware of these rules and understood why they were in place, but that didn't make it any easier. I was actually at work taking care of all Covid patients the day I received the phone call with my diagnosis and ended up leaving work early. On that same phone call, I was also informed that I needed to go back in the next day to get another biopsy to see if the cancer had spread to my lymph nodes as they saw some questionable images on my ultrasound. After just receiving a devastating diagnosis with concerns that it may have progressed even further, and having four more biopsies done without my support system there with me physically was one of the most intimidating things I've ever had to do. I felt anxious, scared, and alone, and did my best to hold it together during the procedure, only to burst into tears as soon as I left the building.

Fast forward a few weeks, I came back to Michigan (my home state) to receive care at the University of Michigan. Since I was a new patient, my first day of appointments was supposed to last 6-8 hours; I would meet my oncologist and breast surgeon, have numerous labs and tests, and wait as the physicians I just met reviewed my records from out of state and presented my case to the tumor board to create the best treatment plan for me, all while Nolan and my parents waited in the car. It's a mouthful to even type all that, and I look back wondering how I got through that overwhelming day all by myself. Sadly this trend continued, and I had multiple days of chemo without any visitors allowed. There were a few days I was lucky to be in a private room for chemo with one visitor thanks to my cousin, who by the grace of God is an infusion nurse in my clinic; But my heart breaks for so many others who went through chemo and other procedures without a single visitor.

All this being said, being a cancer patient is always difficult. But being a cancer patient during the pandemic is possibly even more difficult. Not only have I had to face things alone, but I also have to constantly worry about getting sick because I'm immunocompromised. For those who may not understand, bear with me and let the nurse in me provide some education about what being immunocompromised means. Due to certain medications (in my instance) or medical conditions, peoples' immune systems can become weakened or compromised, therefore putting them at higher risk for infection. People often associate cancer patients as being immunocompromised, and while this is true, there are many other populations who are also immunocompromised such as those with organ transplants or those who have certain chronic diseases. All of these populations are at a much higher risk for contracting an illness or infection because their bodies are unable to fight back like a normal immune system would. Because of this, it can be that much scarier living day-to-day life during the pandemic.

Thankfully, I've been fortunate to have most of my family and friends take extra precautions around me, but when I go out in public, it's definitely intimidating. While I don't want to turn this into a political or controversial post, simple things such as wearing a mask and getting vaccinated help me as well as other immunocompromised people feel that much more comfortable. Yes, I may look "normal" now that my hair has grown back, but even though I've completed IV chemo, I'm still on oral chemo which has actually suppressed my immune system even more. This means I will most likely have to be extra cautious to prevent myself from getting sick for the rest of my life.

The crazy thing is I remember getting my blood drawn annually as a child in the same cancer center (for non-cancer-related labs), and observed some of the cancer patients wearing masks. Now I totally understand why they did so, because it is vital to protect yourself from sickness as a cancer patient so you can continue your treatment plan and medications. On top of that, my immune system is already fighting really hard because of the cancer, so getting sick can also negatively impact my ability to fight cancer as well. This is why it's so important to take precautions to fight any illness, but especially Covid-19.

Ultimately, I just wanted to share some of the unique difficulties and frustrations I've experienced while living through the pandemic, so others can better understand and be mindful. I hope my rare point of view will encourage others to take proper precautions as you never know what other people are going through. I also want to point out that even though I've been living my life and doing things in public, there is always a significant risk when I do this. I have made the personal choice to go out into the Covid world so I can experience some sense of normalcy and live life to the fullest, but I know not all immunocompromised people feel comfortable doing so. I hope this post raises awareness, and pushes people to go the extra mile during this pandemic to show some kindness and take the proper precautions to help other people (immunocompromised or not) feel more comfortable in their day-to-day lives. I also hope this post won't be relevant for much longer and the stupid pandemic will end soon!

What to say (or not) to a loved one with cancer

Knowing what to say to a grieving person can be a daunting feeling. I've had times myself where I don't know what to say to someone when I know they're hurting and could use a friend. After being diagnosed with metastatic breast cancer, I've now experienced what it's like to be the mourning person who people are trying to encourage; And I've definitely discovered things people have said that are helpful, as well as things that I really don't want to hear. Through my experience I want to be able to make a difference in as many people’s lives as possible. Because of this, I’ve felt compelled to share some advice about what to say and not say to a grieving person. Before I was diagnosed, I know I said some of these things myself, so don’t feel bad if you’ve said some of these statements. The goal is to help raise awareness so you can be as supportive as possible as you walk alongside someone going through a difficult time. (side note... When I refer to "I" or "my" in the paragraphs below, I'm not speaking just for myself, but for any loved one who may be facing a difficult medical diagnosis or life situation.)

What not to say or ask...

1. “God has a plan” or “everything happens for a reason.” This might be one of the most frustrating things to hear. Yes, I know, God has a plan for my life, but that doesn’t make my situation any easier. And sometimes God's plan just completely sucks!

2. "At least _____… Yes, your situation is terrible, but at least you have a great support system, at least you're married, at least you got to be a travel nurse while you could, etc." The list goes on and on. I know I still have a lot of good things in my life, and for that I’m extremely grateful, but it would be nice for others to appreciate the gravity of the situation and recognize how awful having cancer is.

3. "You should try this diet, buy this gadget, see this doctor or therapist." This is a really tough one… Sometimes a cancer patient wants to hear everything that’s out there to benefit their health, but at other times, it can be so exhausting to hear everything that we should be doing. At times it feels as though people are judging me for what I’m doing, or not doing, and that I’m foolish for not doing what they think is best. Funny thing about cancer is there still isn’t a cure for it, and yes, there are many things that are beneficial to healing, but you actually don’t always know what’s best for me or other cancer patients, or there’d be a cure. There is only so much I have been able to change in my life, and it takes time to make these adjustments, just as it would for anyone who is going on a diet, or starting to exercise, or investing in something. Now, all that being said, if someone is asking you for advice on what lifestyle changes they should make, then by all means, please offer whatever knowledge you may have. Not all the advice I’ve received has been negative. In fact, I’ve learned a lot from so many people, and I’m so thankful for that. I would just caution you to make sure you’re not overstepping or giving advice at the wrong time. I’m only human and can only do so much, so while you may have good intentions, in the wrong moment it can make me or my family members feel like a failure.

4. "My friend had cancer and is doing fine now" or "my grandma had breast cancer." While I understand people are trying to empathize and relate to me, it's important to recognize everyone has a different story. I realize people are trying to give me hope by sharing a success story of someone they may know, but if my prognosis isn't great (which it hasn't been), this can be very difficult to hear. Cancer is so complicated and there are many different factors, but often if someone is doing well, they most likely have a lower stage of cancer. It also is so frustrating when people talk about their grandmother (or whoever it is they know above 50 with cancer), because even though it is such a terrible disease for anyone, the fact that I was diagnosed at 26 years old definitely makes my situation unique, and I don't always want to hear about an old lady with cancer.

5. "But you're going to be okay, right?" or "Is your disease curable?" Not only is this awkward for me when I tell you "No, my cancer is not curable, and I may not be alright" but it also makes it very awkward for you. Having to be reminded of this fact is not something my family members and I enjoy reliving. I would instead suggest asking a more general question such as "how are you doing?" (I'll talk more about this below.)

To say or ask…

1. I’m praying for you/thinking of you/how can I pray for you? While this can be such an encouraging thing to hear, and I believe it has many benefits, I want to challenge you to not just say you’re praying for someone/thinking of them, but actually put it into action. I know there have been times when I’ve said this to someone but don’t actually follow through. If you’re telling someone you’re praying for them, chances are they really do need your thoughts and prayers and are probably going through a tough time. So yes, please tell me you’re praying for me, but if you feel comfortable take it a step further and actually pray with me; Or send a card letting me know you're thinking of me, and include that piece of scripture that’s on your mind and it will make all the difference.

2. How are you doing? Leave it all on the table and let me control the conversation. This gives me the opportunity to explain how I'm feeling physically, mentally, emotionally, spiritually, and how in depth I want to go. If I'm doing well, I'll gladly tell you. But if I'm not doing so hot, I may not want to talk about it. Also, asking how I'm doing makes me feel like you understand that I may not be doing the best and that you're okay with this and willing to support me through it.

3. What can I do to support you? Asking a grieving person what they need is so important, because it honestly changes on a daily basis. Some days I need to vent and cry, and other days I don’t want any reminders of what I'm going through, so just ask. In addition, it can be hard to ask for help, even if people directly ask my family members or me if we need help. As a cancer patient/family of a cancer patient we don't want to feel like a constant burden on our friends, so at times we may actually need help, but are embarrassed to admit it time and time again. If you're feeling like you want to make us a meal, treat us to dinner, send us a card, or whatever it is, just do it! That might be just the thing we need.

4. I’m so sorry and wish I could take your pain away from you. Expressing sincere empathy makes all the difference. Recognizing the crappiness of the situation, and vocalizing how much it sucks shows how much you really care. In the words of Nicolas Wolferstorff “what I need to hear from you is that you recognize how painful it is. I need to hear from you that you are with me in my desperation. To comfort me you have to come close. Come sit beside me on my mourning bench.”

5. Don't say anything. Silence is fine when you don’t have the words to say. Sometimes just being with someone during a challenging time is better than being alone, especially if you can offer a hug, a shoulder to cry on, or some type of distraction. While supporting me or your loved one without discussing the hardship can be beneficial, be sure to ask how we're doing on occasion. Otherwise, it can feel as though you don't care which eventually is hurtful.

6. Would you like me to tell you about my/my friend's/my family member's experience with cancer? Are you sensing a theme here? Asking questions can be a great way to read the room and see what I do or don't want to talk about. If you understand the daily challenges of life because you're close to a friend or family member with cancer, it can be exactly what I need to hear to not feel so alone in my sorrow.

Although with grief there never seems to be a perfect thing to say, I hope you find these ideas from my personal experience to be helpful. They may say "words will never hurt me," but I'm certain most of us have experienced otherwise, so do whatever you can to offer encouraging words to someone in a time of need, and it will make all the difference.