War Metaphors Can Isolate Cancer Patients-- The Sentinel

This article of mine was originally published in the Sentinel, the student-run newspaper I serve as Managing Editor for. Please pay a visit to the site a check out some the work my colleagues and classmates have done.

This piece was written for the sole purpose of getting the reader to think about the language we use surrounding cancer. As a survivor, I am ecstatic to have the conversation with you and I will not be judging your every word and move. However, from my experience, I feel it is important to think about the way we communicate and to question whether or not the phrases we were brought up with are effective enough in portraying what we truly want to say.

Let me lastly preface this article by mentioning that I believe all cancer patients are brave and strong. I will never disagree on that or take that away from them. To face such a scary unknown in life is a brave thing to do and I applaud each person for continuing on and inspiring us all.

Enjoy.
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The use of war language surrounding the conversation of cancer — using words like battle, combat, enemy, lose and win — may influence the understanding of cancer and how a patient responds to it.

In July 2017, I was diagnosed with stage IA, grade II, ovarian cancer. I was just shy of my 21st birthday and amongst what felt like endless procedures and treatments to come.

After I told my family and friends back in Wisconsin the news via Facebook, I thought it was beautiful to see all the well-wishers commenting with their support. However, I recognized that most of the language surrounding this diagnosis had revolved around battle rhetoric.

“You’ll beat this”

“Cancer isn’t as tough as you”

But in war, we are taught there are winners and losers. Does war, a conflict with the sole objective to destroy the enemy’s ability to fight, accurately accomplish what we are trying to say?

I know my friends and family meant well. Like them, I grew up hearing cancer described as a combat, something you “beat” if you have enough “fight” in you.

Military metaphors were always familiar, but they stopped making sense when the war was my own physiology. Was I the soldier or the prisoner? When cancer, a disease with no cure for it, has spread and shut down other organs leading to death, have we as “fighters” failed?

It makes me wonder what my cells are going to do when I’m not paying attention.

While I do recognize that these violent words may help others during their experience with cancer, it can breed further isolation for a young adult with a rare disease — one comprising less than 0.5 percent of all ovarian cancers.

In my experience, having cancer was not a fight but rather a concurrence where I was forced to live with this diagnosis day in and day out. After all, cancer has arisen from within my body, and to fight it would be waging war on myself.

Cells must divide inside of us every day to remain alive, to grow, and to repair our bodies. Sometimes this process goes wrong and results in cancer.

I understand why this combat language has penetrated the media and everyday life as it is meant to evoke positivity during an unimaginably difficult time.

However, I believe it can have opposite effects on survivors as they potentially face death, so we need to challenge the perception and break away from how we have been conditioned to approach the language surrounding cancer.

Even for those who are said to “conquer” the disease, it will remain with them for the rest of their lives. They may be left disfigured by treatment and have to live with the constant paranoia of recurrence.

As a survivor, my whole existence post-treatment has revolved around starting the conversation too many are scared to have, and not judging what others have to contribute. I know it is often difficult to find the words to say when you hear a cancer diagnosis, and ultimately people find what works best for themselves.

For me, battle metaphors have isolated me even more and so I would only hope that going forward people would spread a message of love instead of the pressure of a death sentence.

I didn’t win or lose, my chemotherapy worked. I do not feel comfortable saying I beat it because it had less to do with me and more to do with my cell type. It’s a success, not a win. Even for someone who is dying, they can still be successful.

With the battle metaphors used as they are today, I do not want to feel a failure about something beyond my control. I refuse to believe anyone’s death will be because they did not battle hard enough — no one wants to be remembered as a loser.

11 Things People with Cancer Want You to Know

Cancer doesn't look the same on everyone, but even so, the reality of living with cancer is very different from the image we try to portray. I could go on and on about the pressures cancer patients and survivors try to live up to, but the truth is that we are all regular citizens trying to get through our days with hobbies and feelings and chore lists like the rest of the world. Here are 11 things people with cancer also want you to know:

1. I am not opposed to talking about my experience. 
Sometimes people need to deal with what is happening to their body every day, and a big part of that is talking it out. This may be a given for me (hello, I have a blog) but a lot of people mistakenly think it's on the hush-hush now that treatment is over. Cancer doesn't end once treatment does. Aftercare is the most important aspect of the journey, and you better believe cancer thoughts are always in our minds every waking day. This is the biggest thing I want you to walk away with — I want to talk to you! I want to get the conversation started. More people need to be talking about cancer, and more than just the typical "you got this" or "that's so sad" type of ordeal. Cancer isn't a death sentence anymore. More survivors are amongst the population today, but also know that more cancers are showing up without any symptoms, too. It scares the hell out of me to wonder if girls walking around campus don't even know that there are symptomless cancers out there like mine. The only way to spread this awareness is to get the conversation started. Even if you're a stranger, talk to me. Sorry mom.

2. Sometimes your main job is to provide a distraction.
Although I prefer to talk it out, sometimes all a patient wants to do is forget about their diagnosis and blend in again. This, in turn, takes the pressure off of you finding the right thing to say, too. I remember a certain time in my treatment when all people would talk about was my cancer and it upset me. To help your fear of not knowing when to talk, remember that simple communication and permission can debunk this issue from the start. The times when those around me would only correlate my life to cancer were the times I simply told them I wasn't in the mood right now. It can be draining to get a papercut and have someone flee to your side to fix it just because you have cancer, or because they mistakenly see a correlation between a papercut and a cancer diagnosis.

3. It's okay to say or do the "wrong" thing,  just don't disappear because you're afraid you'll hurt me.
It can be hard to find the right words to say when you hear a diagnosis, let alone the word cancer. You eventually find the strategy in communicating what works best for you. Hopefully that doesn't include ghosting those who were diagnosed. It saddens me that I can honestly think of almost ten people who haven't said a word and fleed since my diagnosis one summer. No explanation, no reason — just silence. One of those people was my best friend at the time, and another was a cousin who literally pretended I wasn't standing in front of them. There is a big, bold line between respecting a family's wishes during a fresh diagnosis, and then carrying that silence out for the entire duration of treatment. Perhaps it was my fault for posting on Facebook after the big news that I didn't want a crowded inbox, but looking back I remember only hearing of others' support through my mom's private messages, if anything. I can't help but wonder how many other patients lost friendships and relationships overall due to illness. Cancer doesn't change us, except for the better. I'm still me. Cancer didn't take my dreams and goals away, I just added "kick cancer's butt" to the list.

4. I need to feel hope, but telling me to think positively could make me feel worse.
Emotions are real and heightening while facing death. I mean, c'mon, reread that sentence. Cancer patients and anyone facing adversity (cancer-related or not) can agree that the pain they're feeling in this moment just needs to be validated and recognized, not masked by cliches. One simply cannot snap their fingers and be a Positive Petunia, especially whilst navigating the whirlwind of thoughts and emotions running through their heads at the same time as poison running through their veins. Keep it simple, and keep it real.

5. Don't take anything for granted. 
It is truly a blessing to have gone through this [terrible] experience and learn that each little thing in life is such a gift. It breaks my heart to go around seeing how passively people take these things for granted. For every bad hair day you have, I would bet there are countless people wishing for even an inch of hair to grow back. The fake April Fools pregnancy on Facebook isn't funny to those trying to navigate infertility and loss. To the 1 in 4 women who will experience miscarriage in their lifetime and the 1 in 6 who will experience infertility, the words "I'm pregnant" will never be funny. It's the little things y'all. Ovarian cancer or not, chemotherapy and radiation can have terrible effects on fertility, organs, eggs, sperm, ovaries, and everything in between. Literally. Cancer survivors are not all sensitive and judging you on everything you say and do, we just want you to know that this is our reality, the same way your potentially-opposing view is your reality.

6. Chemo brain is real.
The phrase "chemo brain" is a term coined by survivors who are experiencing mild cognitive impairments after chemotherapy and radiation. Common symptoms can include mental fogginess, difficulty concentrating, being unusually disorganized, confusion, and troubles with verbal and visual memory. Although researchers still don't know the exact reason behind it, the term is very misleading because chemotherapy itself is not believed to be the sole cause of chemo brain. My memory has never been stellar, and I only had four months of chemo, but I've noticed since returning to school that it takes me longer to complete everyday tasks and I frequently find myself forgetting simple vocabulary in the middle of my sentences. The severity and duration of the symptoms vary from person to person depending on their diagnosis and treatment, but those who experience chemo brain on any level would gladly appreciate your patience and recognition of this sometimes-debilitating and frustrating side effect of treatment.

7. Cancer is not contagious.
Do I even need to say this? Unfortunately, I do. I was getting my nails done one day when the nail technician rudely questioned why I didn't get a certain type of nail polish on my nails instead of the one I chose. I kindly stated that I like the stronger gel because my nails became weak after chemotherapy. I noticed the woman stopped what she was doing and followed it up with a disgusted look on her face. "You had cancer?" she asked, as if I had the plague. Yes, I had cancer. No, it's not contagious. Can we keep it moving?

8. The patient isn't the only one who needs support.
For those of you who don't know, I stayed silent most of the time I was undergoing chemotherapy because I was too nauseated to even speak. Not talking resulted in a lot more observing, and let me tell you how hard it was to sit back and watch those closest to me go through this disease and treatment with me. Outsiders often forget that the family and close acquaintances go through it with the patient. I received the diagnosis, but quite frankly, so did my parents, my boyfriend, my brother an even my supporters. I'm sure it was just as hard for them to go through, and they did it with less support. Don't forget about the family and cheerleaders as we are all in this together.

9. Forgive me.
There will be times when the illness and its treatment make someone not themselves. We may be forgetful, abrupt and/or hurtful. Know that none of this is deliberate. Please don't take it personally, and please forgive me. Also know that each of your gestures is appreciated and actually help break down the barriers that cancer can sometimes build up.

10. I want you to reduce your cancer risk.
I don't want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes — stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat and drink. Please listen to your bosy. When things feel off, they usually are. Go see a doctor for regular check-ups and demand follow-up care whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.

11. I am so much more than my disease. 
Lastly, please remember that I am still me. I just happen to have gone through a touch of cancer.

Take care of yourselves,

Abi

How Not to Spend Your First Two Weeks of School

This blog post is brought to you by RedBull. Not in sponsorship, but in my belly. You may be wondering, "Woah, Abi, aren't you trying to become a health blogger and cancer advocate or something?" Why, yes I am.

You see, I am human. Duh. And sometimes humans go against their beliefs when they also sometimes start to run on low batteries. Also, duh. This is me this week, hence the two-week blog hiatus and a drink I can say I've maybe had three times in my 2.2 decades of life. We all need artificial wings every now and then while ours try to grow back.

Enough with the nonsense, here is the rundown!

A very important post is going up tomorrow, and an even better one on Tuesday. But for today, I thought I would update you on the last two-ish weeks of my life.

Since my last post, I have gone to my nine-month post-treatment check-up with my oncologist, which was a routine visit coupled with analyzing the results of my last ultrasound (monitoring the cyst found on my ovary in May).

I've always said how unhappy I am at this office, always waiting for answers and for someone to teach these people common communication practices in a freaking cancer clinic. Anyway...

The ultrasound showed I still have a cyst on my right ovary. There is no telling whether or not this is the same cyst from the CT scan, as women all around the world live with cysts every day - cysts are actually naturally developed around one's menstrual cycle. So, we wait some more.

To top things off at this appointment, I didn't even see my oncologist or hear a reason as to why I was seeing her nurse practitioner instead. Her NP is a lovely woman who actually gives me more time of day to ask and answer questions, but who sends in an NP to evaluate a test ordered by the doc herself?

The search for a new oncologist is on the agenda, as well as a new post about the importance of advocating for yourself at your appointments.

My bloodwork at this appointment came back within normal ranges. Every three months I have blood drawn for a hormone panel as well as checking CA-125 levels (Cancer Antigen-125, commonly measured to see any deviations in a trending level of this protein).

I am to return in November for my one-year post-treatment check-up for routine physical exams, blood work, and ultrasound to monitor the cyst. Imaging for the polyp in my gallbladder and lung are set to follow.

The waiting game at this point is getting old, especially with paranoia on the rise. In the meantime, I focus my energy on eating balanced vegetarian meals and intense study sessions to kick off the fall semester.

My grandparents (front row), mom (top right), and all my aunts and uncles! 

I have returned to school to start my 600th year of study (kidding, I have a year left). In the midst of preparing for it all to start, my family and I were given bad news that my grandfather had had a serious medical emergency one night. For sake of his privacy, I will spare you the details. My mother flew out the next day to spend a few days with him, to which he was released from the hospital and able to make it to his surprise 80th birthday party.

It was hard not being able to witness that celebration with him, but the pictures they took captured it all. At the end of the day, I'm grateful my gramps is home and okay.

My fall classes dive heavily into a lot of writing and exercise physiology, and I couldn't be happier. To couple this theme, life as managing editor of my school's newspaper has been quite the learning experience. I can't wait to see what the semester holds for the paper as well as for us new folks as we grow together each week. 

First day of school!

Make sure to stay tuned for my article in next week's paper about a new perspective on cancer, which I'll be sure to include on the blog on Tuesday. 

Take care of yourselves, 

Abi

Inside The Mind of a Chemo Patient

(post-surgery — port placement for administering chemotherapy)

Today's message is quite a personal one. I was cleaning through my laptop to better prepare for the upcoming semester and stumbled upon a couple journal entries from before, during, and after chemotherapy.

After reading through some and learning a few lessons along the way, I thought it would be wholesome to include in the blog for readers to better appreciate the raw feeling's of a chemo patient in real-time (and potentially get to know the old Abi a little better).

Let me disclaim that everyday was not a struggle with negative and dramatic journal entries, but also that everyday was definitely not all rainbows and candy canes. The emotions I felt and the thoughts I had varied from day-to-day, and progressively fell back as chemo moved forward.

Today I'm sharing with you an early journal entry written right before my first round of chemotherapy, while recovering from the two surgeries I had in July of 2017. The recovery periods for both of those were all-consuming and rough, hence some dramatic language in some of these journals.

The first surgery was my diagnostic surgery to remove the tumor, stage the cancer, and also remove the left ovary. My chest and abdominal cavities were surgically filled with gas to help the surgeons play their game of "Operation" on me. That healing process with gas trapped under your lungs and diaphragm was described as worse than childbirth, and for me, the worst pain I have ever felt to date.

The second surgery was a lot more tolerable, placing a port under the skin by my heart for a means to pump the poison (chemotherapy) throughout my entire body. Recovery was just a limp left arm, and avoiding all mirrors to see an instrument right beneath the skin. The port has since been removed, but still weirds me out to this day. I still flinch when anything (clothing included) comes remotely close to the surgical area. Anyway...

Journaling has always been a cathartic hobby of mine, and especially in these moments was it my most reliable way to escape my brain as I dumped my thought bubbles onto paper.

In this entry, I talk about how upset I was to have taken the fall semester off of school and work to go through treatment (as if I had any other option). I felt like I was missing a lot: my favorite season, football games, being on campus with Christopher during his first semester after he transferred, and of course pushing back graduation. Looking back on it all now, it is astounding to hear that these were the thoughts running through my head that eventless summer day, but nonetheless valuable to know that I have since grown so much and transformed my thoughts into more healthier, productive, and mindful ones.

The things I wished for back then are not the things I strive for or cloud my mind with today. Perhaps that was the entire plan for this tragic occurance I went through - to transform the mind and ultimately transform myself to a higher, healthier being with more clear and logical goals.

I hope you enjoy the very intimate details of my journal entries to come, as I never thought these would be shared with the world.

"

08/10/2017

Tomorrow is Monday.

Tomorrow everyone my age gets to return to campus for the start of the school year while I will be sitting at home drowning in my thoughts and panic attacks with Harry Potter in the background for the third time this week.

Fall is my favorite season and it is most definitely my favorite semester. The thought of a beautiful campus in the evening while you cozy up in your favorite study spot, sipping fresh coffee to warm up and study sounds like all I want right now- Socialization with people my age. . . A change of scenery again. . . A bitter but great reunion with biology and chemistry as I compete with myself for good grades again- I miss it already.

Instead, my reality is healing from another surgery I had two days ago. . .  A sore arm from the procedure and the other arm sore from doing all the work lately to keep me functioning. I’m faced with constantly having to block out the bad thoughts and panics about chemotherapy which is starting in a week.

I’m missing Chris’s first day after he transferred and a chance to be at the same school again. I’m missing the chance to escape the everyday walls that surround me at home. I’m missing football games and tailgate parties (and various college events that I probably would skip out on anyway).

There’s just something about being on campus, and feeling like you belong and you’re succeeding. You have the chance to do whatever you want, study whatever you want, workout whenever you want or some other endless possibility.

Instead, I struggle to sufficiently fill my time. I’m too exhausted to do anything productive but I’m too antsy to lay around all day.

It has really been defined that I have little to no hobbies or interests, and all I ever do is study and work. This could be an eye opener going forward that I need to have more fun, but at the time I wasn’t complaining. I liked working hard and studying all the time and challenging myself.

I just want to blend in again.

"

There you have it, short and simple. Through this adventure and with every treatment, my mind got stronger as my body got weaker, as you will read in future posts about past journal entries (in chronological order). These valuable insights could only be realized through the power of journaling, and with that, I continue to write each day.

Take care of yourselves,

Abi

Update #1: My Maniacal Week

Hey all!

What a crazy week it has been. I thought I would send out my first update here on the blog before I wrote any of the posts I have in mind for your own benefit.

Here it goes . . .

The summer semester came to an end this week with the completion of my chemistry courses on Monday and Tuesday, and boy, was it a great feeling to leave that classroom! However, I didn't finish the final exam in the time allotted, so I was partly freaking out that I would have to retake chemistry in the fall, but I somehow managed to pass both classes with stellar grades.

Wednesday's plate was even fuller. I woke up with the sun to take my overweight cat to the vet for what we thought was a broken foot. According to this vet's examination, Barkley's knee is out of place with "tremendous swelling." I had to leave the vet early for my own appointment, but from what my mother told me it looks like we are to give her anti-inflammatory meds for a couple days and see if it gets any better or worse. We will follow-up at the vet next week to see if she needs x-rays and potentially surgery. (My poor furbaby was also put on a diet!)

Like I said, I left the vet early for my own appointment- the first of two for the day. My first appointment was for an ultrasound of my right ovary. (I guess I can just say ovary now that I only have one, right?) Let me explain:

Three months ago, at my six-month check-up, my oncologist did a physical exam and apparently didn't like what she felt. Neither of us knew what that meant, so she ordered a CT scan to check it out. At this said CT scan, they found something in my lung, my gallbladder, and my ovary. Scary!

Apparently the mass found in my lung (not as scary as it sounds) appeared in the last CT scan, and hadn't changed since then, so without symptoms no one was concerned (except me, hello??).

The little guy they found in my gallbladder was followed up with a second opinion from another physician since my oncologist only deals with lady parts, and then later followed up with an ultrasound that revealed a very small, potentially-nonharmful polyp that will be monitored every six months. Again, symptomless- but paranoid, let's be honest.

Identified on my ovary was a cyst and some fluid in my pelvis, which could have been from an ovarian cyst rupturing, or perhaps worse. No one really knew, and again, I was symptomless. I was ordered an ultrasound in three months from then (so, Wednesday was the day) to see if it would go away, stay the same, or change.

At this ultrasound, I got to see my favorite ultrasound tech who has such a fabulous way of making you feel like you're not a patient. She's honest, patient, up-front, and so sweet- I wish all healthcare workers could be like her! It was a quick and easy appointment that I will get the results from by the beginning of next week.

My second appointment of the day was for the results of my genetic testing I had done in July. I will be writing a more in-depth post about this topic and about my experience, but just know that it was quick and easy, and fortunately all my results were negative. This means I have no known DNA mutations to worry about passing down to future children, or to warn other family members about. Granted, the field of genetics has a long way to go, but hearing the news was a breath of fresh air after such a busy day of appointments!

Next week is my last week before school starts up again for the fall semester. I have my nine-month post-chemo check-up with my oncologist, and then I really plan on writing a lot, relaxing a ton, and getting my life back on track after a crazy week and crazy summer semester. All about that rest and recharge!

You can look forward more frequent posts next week including some journal entries I dug up from the times before and during my chemotherapy treatments, as well as more about my story and what you can do to increase your wellness and wellbeing.

Thanks for reading and caring enough to hear my updates.

Take care of yourselves,

Abi