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!

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.

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.