Here’s What Cancer’s Really Like.

So here’s the thing. Cancer sucks.

I’m generally a positive person, because I used to be really, really stressed and that was just no fun. It got me nowhere good, fast, and life sucks enough already sometimes, so you just gotta smile and look at the bright side. But, I can’t always do that with cancer. This post is going to be all about what it’s really like, and what I really have to go through. And this is just the physical side effects of cancer. The emotional side effects, well, that’s for another post.

Even now, I like to be positive, to be goofy, because that’s who I was before cancer. And I suppose one of my ways of fighting cancer is to not let it change me, or at least, to not let it make me sad, bitter, angry, or mean. Anyone who’s close to me knows that my primary way of dealing with this “tragedy” has been to keep things as normal as possible. I say “tragedy” because life isn’t perfect, and this is just my challenge, and it’s just temporary. And for that, I am grateful. However, it is NOT easy to keep things normal. BUT, I do so by spending as much time with friends as I can (about once every 2 or 3 weeks, when I’m feeling good), laughing with friends and family, being outdoors, reading, having fun, and being as kind as I know how to be.

When I was initially told that I had a tumor, the very first thing that needed to happen was to figure out what this tumor was, and if it was a (serious) risk to my body. The first way my doctor thought to do that was using a giant needle, and I mean like, a foot-long needle, and sticking it into my cheek to draw a sample from the tumor to see if it was benign (or not). Literally, I had no warning, it just happened within the next 5 minutes. Scary stuff.

However, the monster needle test came back inconclusive. And the many scans that I had post-needle test all showed where the tumor was, but still not WHAT the tumor was. I remember when I received my first MRI, and how the very act of laying down flat was unbearably painful. I spent the entire 45-minute scan tearing and I pressed the “panic” button twice. This was because of the size of the tumor and the pressure that it was putting on my face. This being the case, sleeping at night was only mildly more comfortable if I had about 3+ pillows propping me up. As if this wasn’t enough (because it literally wasn’t), a surgery was in order, a surgical biopsy, to be more medically accurate. I have never been in a hospital overnight, I have never broken a bone, and this was going to be the most intimidating medical procedure that I’ve had since having my wisdom teeth removed, and that’s common for most people!

Things I learned from my surgical biopsy:
1. Hardcore anesthesia makes it look like the ceiling is moving.
2. The pain in my mouth from the slit made during surgery to extract a piece of the tumor (right side, above my upper molars) hurt like the dickens.
3. Morphine should not have been my pain drug of choice because never have I felt so constipated and nauseous in all my life (until, you know, chemo began).
4. Making a slit in my mouth near my tumor provided for a nice little pathway through which my tumor could escape into my mouth. Believe me, I wasn’t so pleased to learn that either. The nausea and horror at what my body was capable of provided for many times of getting sick. (In quite a few of my Facebook photos from around my birthday, you can actually see the tumor in my mouth when I smile)

Then I finally received my diagnosis, and a few days later I had the surgery to put in my chest port so that blood work and drugs could be administered without having to constantly prick my arm with needles, and the chemotherapy began. And let me tell you, there is absolutely nothing more terrifying than willingly going to have drugs pumped through your body that you know are going to make you feel downright awful. Here’s what chemotherapy treatments are like:

The first 6 chemotherapy treatments would land me in the hospital for about 5 days, even though I only received chemotherapy drugs for 1/2 of that time. The additional time spent in the hospital was to monitor my severe pain and nausea. Something helpful I learned is that you can refuse the hospital meal service, which was convenient for me because the very thought and smell of food made me gag or actually throw up. In addition, because of the amount of drugs being pumped through my system, I never remember anything from those couple of days. I act totally normal, I respond normally, I might have sent a few goofy text messages, but I just do not remember anything that happened. You could say that I, well, blackout.

These chemotherapy treatments consist of 3-week cycles. Every 3 weeks, I began a new chemotherapy treatment.

Week 1: I receive the chemo drugs (or at least remain in the hospital to help monitor the nausea and pain, usually nausea, after 2-3 days of chemo drugs).

Week 2: I’m recovering from the chemo drugs by sleeping (or not being able to sleep at night and napping a whole lot), throwing up or actually, dry heaving because I haven’t eaten in days, trying to poop (which is hard to do when you’re not eating), going to the hospital every other day (or every day) to get blood work done to find out the same thing every time (my blood counts are down and any contact to outside germs could result in a fatal fever), crying a lot, whining, more sleeping, and a whole assortment of drugs at all hours of the day, so many that my family has a whiteboard calendar to keep track of them all.

Two times during this week 2, I ended up in the hospital because I spiked a fever, which could lead to an infection in my port (the one in my chest) or even have fatal repercussions. Therefore, I would be in the hospital for a few nights receiving antibiotics and waiting for my fever to go down to normal for more than 24 hours. These visits always began in the ER late at night, because that’s just when it was most common for my fever to spike.

Week 3: I’m usually feeling pretty good, if I’m lucky.

During Week 2 & 3, I’m usually the most contemplative and that can lead to one of two things. Either I’m very thankful, mature, and “inspirational” and recognize all the blessings that I have in my life despite my circumstances, or I’m bitter and feeling very alone, painfully misunderstood, and incredibly unworthy of such sickness.

Then there was radiation, all 34 treatments. Monday through Friday, I received radiation at a facility 35 minutes away in Somerset. At first it just caused what looked like sun burn on my cheeks, but then it started to penetrate into my mouth. This radiation caused mouth sores that made it painful for me to swallow, spit, chew, and even talk. I was writing messages on my own personal whiteboard to communicate with people.

I couldn’t eat, and I was losing too much weight, so I was hooked up to IV nutrients through my port, or TPN. I received this TPN for 1 month. 16 hours per day of being hooked up to this pump in a lovely backpack. Most of time I was sleeping, but I always had very little motivation to get up in the morning while still connected to my backpack. While my chest port was accessed for my TPN, the only way I could properly shower was to cover my port with “Press n’ Seal” and hope and pray that my bandaging surrounding the port didn’t get wet. You could say showering was a bit of a chore…

Currently, I’ve been off TPN for about 1.5 weeks, but I’m still battling with my weight loss. Since my chemotherapy treatments have begun, I’ve lost a total of 25 pounds. I usually gain and lose about 3-5 pounds between treatments, but that’s just the harsh reality of how little I’m eating and still getting sick. I’m also experiencing something called “chemo fatigue”. A medical term for what my body is feeling after having gone through 9 chemotherapy treatments. Chemotherapy drugs that used to not make my blood counts drop so drastically are now doing exactly that. I’m crying more often, and it seems to be set off by the smallest of triggers. My legs feel like jelly, and when I close my eyes in the shower to rinse soap off my head and face, I almost fall each and every time from being so disoriented. I’m tired almost always. I feel depressed. And quit frankly, I’m just done. I want it all to be over.

This blog post is brutal because cancer is brutal. What I’m going through is absolutely and terrifyingly horrible. But, the thing is, it makes me all the more thankful for what I do have. Feeling so much pain, makes me all the more thankful for the amazing things in life that I DO have. And THAT positivity, THAT hope, and THAT love in my life, shown in so many ways and through so many people, that’s what keeps me going.

I want people to know just how much it hurts, and that I’m really not okay. But, sometimes I am okay. I’m happy. And I’m thankful for those times. I’m thankful for just being alive.

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Wait, What? How Do I Have Cancer?

So, here’s the thing, friends. I’ve been told time and time again how incredible it is that I am remaining so positive through all of this. “All of this” being a complete halt to what I expected my life to be right now. I expected to have a job as a middle school teacher, I expected to be living in an apartment on my own, I expected to be healthy, productive, and working hard.

But, here I am, chilling on my couch in my usual place, a place where my family has learned not to sit because, well, it’s my place. After graduating and taking many unflattering graduation photos with my wonky smile, I immediately went home and began my medical escapades. When I first learned that I had a tumor in my cheek, I was relieved because I finally had an answer to why I had been experiencing so much pain for the past 6 months. After sleepless nights of watching Reba with frozen veggies stuck on my face to cool the pain (which my apartment mates can vouch for) and many, many different pain medications taken around the clock, relief was DEFINITELY something I was feeling.

But that’s crazy! You just found out that you might have a cancerous tumor in your face! 

Yes, but I had an answer. The next step was to actually find out whether or not this tumor was cancerous, and this involved a lovely surgery in which I learned that my body does not like morphine. Morphine and I are not good friends. As I was finally recovering from being my sickly self, I was hit with another punch to the gut when my parents and I received the diagnosis of there being a Malignant Peripheral Nerve Sheath Tumor in my right cheek. MPNST for short… So, I’d have to begin chemotherapy treatments right away, which would probably last a whole year. And yes, I would be losing my hair. I would have to get many more CT scans, MRI’s, and PT scans for a baseline of what my tumor looked like.

I found out that it looked BIG. I found out that surgery was out of the question because as the name of the tumor indicates, it’s on my nerves. I’d already been suffering from numbness in my cheek, and any surgery could be very hazardous and lead to permanent nerve damage.

I visited 3 different doctors before beginning treatment, one in Philadelphia at CHOP, one in New York City at Memorial Sloan Kettering, and my main doctor now at Morristown Memorial Hospital. Each doctor said the same thing, that “Your tumor is very far along, you need to begin treatment right away.” And “This is very rare type of tumor, so we’re not positive about which treatment is going to work best for you”. And my favorite, “Why did you wait this long to begin seeking medical help?” (The answer is because I wanted to graduate, because who really anticipates that the severe pain you’re suffering from is a result of cancer?)

There is no set cause for why I have this type of tumor, there is literally no rhyme or reason as to why I am going through this right now. Well, not that I know of. Therefore, this blog is going to be about my journey through hell-ish treatments, both medical and personal, intense emotions, questioning, “Why me?” far more than I’d like to admit, and taking the time to talk to God about my life and what He wants for me RIGHT HERE and RIGHT NOW. I’ll be venting, I’ll be rambling, I’ll be honest, and with that honesty will come some gross details and messy emotions, but hey, cancer sucks.

My hope is to show what cancer really is. I hope I can explain it in such a way that people understand how painful it is, yet how how much I’ve learned through this entire experience. Because positivity is important, but so is transparency. 

So fasten your seat belts, friends, and get ready for a bumpy ride.