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.

Kicking Chemo to the Curb

The "C" word. Are we talking about cancer or chemo? Doesn't really matter, because they're both horrendous. But in this case, I'm talking about chemo and all of the wonderful side effects that come with it. Since there are so many types of chemotherapy and each type offers unique side effects, I will be specifically commenting on my personal experience with Adriamycin/Cytoxan (AC), and Paclitaxel (Taxol). While I don't want to scare you if you haven't started treatment yet, I want to be completely honest so you know what to expect, as well as offer some tricks to help get you through.

Lets start with AC aka the red devil. It has this nickname for a reason. This chemo was quite possibly my least favorite part of my cancer journey, and that's saying something. Here are some of its not so fun side effects:

1. Nausea - AC is known for inducing awful nausea. When I heard that, I was not pumped. But, the good news is there are so many medications around now to help combat this! Every time I received chemo, I would get loaded up with meds beforehand to help prevent nausea. Some of these meds included Decadron (a steroid), Aloxi (an anti-emetic, meaning it prevents nausea), and Cinvanti (an anti-emetic designed specifically to be given with chemo). When those meds didn't seem to be enough, my doctor was more than willing to prescribe even more drugs. On top of the meds, it also helped and was recommended to eat small, frequent meals. If your stomach always has a little something in it, you're less likely to become nauseous. After my first round of AC, I did get so nauseated that I vomited, but I told my oncologist right away, and she was able to prescribe me some medications to take at home including Zofran and Compazine (both antiemetics). I found that my doctors would pretty much do everything possible to help decrease side effects which was a huge relief. They even gave me Zyprexa, which all nurses know is an antipsychotic and used to calm down those crazier patients. Who knew it could help with nausea as well!

2. Heartburn - I thought I'd experienced bad heartburn before, but after receiving AC, I realized I was wrong. My heartburn was bad enough that I always had tums on hand and thankfully they seemed to help to some extent. I also took Prilosec twice a day, to help decrease stomach acid. While you can get these medications as well as many others over the counter, make sure you discuss with your physician before trying a new medication. It also helps to avoid acidic, spicy foods, and to refrain from eating close to bedtime.

3. Hair loss - The dreaded and probably most well known side effect from chemo. In fact, when most people think of cancer patients, they think of bald people. While everyone deals with hair loss differently, this was way harder for me than I ever expected it to be. Something I did to help cope with my hair falling out was cutting my long hair a little shorter before it fell out, just to ease myself into it. Once it started falling out around day 16, I ended up shaving my head to ease the pain. Not only can it be physically painful if you have long hair that's falling out, but it also helped ease the emotional pain so I didn't have to see such long clumps of hair falling out. Some people choose to invest in cold caps to prevent their hair from falling out; however after looking into it, I decided it wasn't the right choice for me. Not only are cold caps expensive, they also require a lot of time and patience, and I've always been a pretty low maintenance person when it comes to my hair, so I decided it wasn't worth the hassle to me. If it is important enough to you to keep your hair, then cold caps might be a great option for you! One plus to my hair falling out was that it fell out of my legs and armpits, meaning I didn't have to shave. Can't complain about that one!

4. Fatigue - Okay, let's talk fatigue. The fatigue I experienced with AC was so extreme, it's hard to put into words, so I will do my best. Once the IV infusion was completed and I got to the car, it took everything in me to keep my eyes open. I would definitely recommend having someone drive you to and from chemo for this very reason. After my very first dose, I remember getting home and passing out in my dad's recliner for who knows how long. Imagine feeling like you've been hit by a truck, haven't slept for a week, while having the worst mental fog of your life. That's the best way I can describe this feeling. Extreme physical and mental exhaustion that forces you to use everything you have to be able to walk up a flight of stairs or even keep your eyes open to watch a movie. What helped me get through this? Not a whole lot, so I listened to my body and slept as much as a I could. Naps become your best friend, so take them whenever you need. I also learned over time that my fatigue was the worst for the first 2-3 days after chemo, and then the fog would slowly start to lift. I would definitely recommend having others around to help you with daily chores and meals for those first few days. I do know some boss women who have done everything themselves, but I honestly don't know how they did it!

5. Constipation (or diarrhea) - AC affects people differently, so some people get diarrhea and others get constipation. After starting AC, I quickly learned what true constipation was. It can be hard to know how you're going to react to the red devil, but the one thing that will help with both diarrhea and constipation is to stay hydrated. Drink as many fluids as possible, and it will not only help with your bowels, but also with energy levels. If you start feeling any bit of constipation, take a stool softener such as Colace on a daily basis. I also ended up having to take Miralax to help me have a bowel movement. Stay away from suppositories as they can irritate your rectal tissues (gross, sorry) and cause infection.

6. Mouth sores - I had a couple mouth sores, but nothing too crazy. Staying away from acidic foods helped, as well as doing daily mouth swishes with warm water and salt!

7. Low blood counts - When I say low blood counts, I'm specifically talking about low white blood cells (WBC). WBC's are what help your body fight infection, so when they become low from chemo your doctor may tell you you're immunocompromised. Unfortunately there isn't much you can do about this yourself, other than doing your best to stay healthy. With certain types of chemo there are medications you can take to help stimulate your bone marrow and increase your WBC counts, but this isn't always the case. Chemo can also reduce your red blood cells. For someone like me who is chronically anemic, I actually had more problems with my hemoglobin dropping during AC than my WBC. Because of this, I required a few blood transfusions during this time. If you start feeling short of breath, dizzy, or more fatigued with daily activities such as walking, or if you become pale, these can all be signs of low hemoglobin. Your doctor will be monitoring your labs very closely during chemo, but it doesn't hurt to know what symptoms to be looking for.

8. Chemo brain - I remember the first time I heard about chemo brain, thinking it sounded like an excuse for having a bad memory but it's totally a real thing! Along with the fog I described above, you can also have a harder time concentrating and remembering things. I definitely experienced this for the first few days after I got an infusion of chemo. I remember sitting in the chemo chair not being able to concentrate enough to read or watch tv which is abnormal for me. While there isn't much to do to make this better, I found that sleeping it off helped! I also found coloring books to be a helpful way to pass the time since it's a pretty mindless activity.

Next, we have Taxol. Compared to AC, this chemo is a breeze! While it definitely still has side effects, I lucked out and barely experienced any of them, so I will comment on what I know first hand, as well as some of the known side effects I was fortunate enough to not experience.

1. Hair loss - Since I received AC before Taxol, the hair on my head had already fallen out, but I knew that Taxol often causes even more hair loss including eyebrows and eyelashes. In order to be prepared, I went to Sephora when I still had my eyebrows and eyelashes, so I could get some assistance with finding a long lasting eyebrow pencil that matched my hair color. I also purchased multiple pairs of false eyelashes and ended up becoming a pro at applying them for special events. Some women, choose to wear fake eyelashes on a daily basis, and I've heard that the magnetic strips can be easier to apply that the classic eyelash glue.

2. Nausea - while the chances of becoming nauseous are much lower with Taxol than AC, some people still experience it. I was fortunate to not experience nausea or any GI symptoms with Taxol, but if you do find you're nauseated, look at my recommendations above for nausea.

3. Neuropathy - This is one of the most common side effects from Taxol. Neuropathy is numbness, tingling, pain, or sensitivity to hot/cold most often in the hands, feet, arms, and legs. I was so lucky and did not experience any neuropathy at all, although I'm definitely the outlier, and my oncologist was not surprised by this as the two biggest risk factors for neuropathy are age, and diabetes. There are medications that can be prescribed for neuropathy symptoms, so if you experience neuropathy just make sure to voice your concerns to your oncologist.

4. Low blood counts - Just like AC, Taxol also causes low WBC, also known as neutropenia. Because of this, my oncologist prescribed a drug called Neulasta. This medication helps your body make WBC's by stimulating your bone marrow. The purpose of this is to be able to fight infection more effectively. One weird thing about this medication is the way it is administered. The nurses will poke a small needle into the back of your arm or stomach that's attached to a pod containing the medication. The pod will later inject the medication on it's own after about 24-36 hours from your chemo infusion. Some people do experience bone pain, especially in their joints, from this medication. I had mild bone pain, and found that taking Claritin, as well as Tylenol and Ibuprofen can help with this.

While I'm sure there are side effects I didn't cover, I hope this information is helpful for those who are just starting AC and Taxol. I know firsthand that starting chemo is very intimidating and overwhelming, so it's my prayer that even this little bit of knowledge will help someone else's journey become that much easier. Also, don't forget to celebrate once you complete chemo. It is truly an amazing accomplishment.

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!