Tuesday, June 17, 2014

What does a cancer patient look like?

I know I have been the absolute worst blogger ever.  I apologize.  Today, though, I have something to say.  A friend of mine, who I met through work, has Follicular Non Hodgkin's Lymphoma.  She has recently been called a liar about the fact that she has cancer and actually took the person who called her a liar to her doctor's appointment to prove that she was telling the truth.

That's nonsense.

Why does this topic irritate me so much?  Because I was also called a liar.  So many times.  Not by anyone I ever met in person but by people who could hide behind their computers and call me names.  Because of this infamous picture (well, it feels infamous to me because it just pops up again and again haha).

So, in case you don't already know my story, I was diagnosed with stage IV colon cancer at 26.  No family history, no lynch syndrome, no real reason that I can figure out that I could have colon cancer.  Stage IV.  I googled survival rates and do you know what they told me?  That, statistically, I had a 6% chance of being alive in 5 years.  I'm sure if you heard that news you can imagine how that would make someone feel.  

So what did I have to do treatment-wise?  I had a left hemicolectomy where they removed the tumor from my colon, along with a foot of my colon, and the about 17 lymph nodes, 11 of which came back as cancerous.

I also started an intense chemotherapy regimen of 12 rounds of Oxaliplatin, leucovorin, 5FU, and Avastin.  I went every other week for my infusions and had to wear a pump home (which stayed attached to my port) to infuse one of the medicines into my body over 46 hours.  Here's a picture of me attached to my pump (they had given me a fanny pack to wear it in but that wasn't happening, I bought this bag from Target and it fit the pump in it perfectly). 

I also had a liver resection, which included removing 60% of my liver.

I thought I was done with chemo when I took the infamous picture.  My oncologist changed his mind and decided to then have me to 11 rounds of Xeloda (the chemo pill) and Avastin (which I had to have infused through my port).

I had a few hiccups and hospitalizations (and an emergency surgery) along the way but this is the shortened version of my story, which took place over about 17 months.

I went through what felt like a lot.  My body's internal strength was tested to the extreme.  But what did I look like when I was going through this?  Allow me to show you.  These are all pictures taken while I was on my intense chemo regimen.

I look like a normal girl, right?  I am normal girl.  I just happen to have had cancer.  Do I look like what you picture when you imagine someone with stage IV cancer going through active treatment?  Probably not.

Guess what?  Cancer doesn't always look the same.  

You do not always lose your hair.  Let me repeat, you do not always lose your hair.  Yes it happens a lot, but not all of the time!  My hair thinned out but I did not lose it all.  

You do not always get emaciated.  Again, yes, this does happen, but not always.  In fact, a lot of people actually gain weight on chemo because of the steroids they give you.

There is no rule that says you cannot wear makeup or jewelry.  A huge reason people decided I was not telling the truth is because I wore makeup and jewelry to chemo.  My oncologist never told me that was against the rules and I have yet to see a study how makeup and jewelry can interfere with how well chemo works.

You can wear your own clothes to chemo if you go to an outpatient cancer center like I did.  I was not admitted to a hospital to have my chemo given to me.  I'd show up, they'd do my infusion, I'd leave that same day and come back a couple days later to have my pump unhooked.  

You can still try to live your life normally.  Cancer can be very overwhelming and can easily consume your life.  If you try to keep things normal and do things you would do even if you didn't have cancer, it makes you feel more normal, despite everything else going on.  There are definitely days when you don't feel well but trying to live like a normal person makes things a little better.

So why do I feel the need to write this all out?  Because it drives me mad that people, who have no idea what it's like to have cancer, feel like they can call people, who are fighting for their lives, liars because we don't look "sick enough."  Why do I have to look "sick" for you to believe me?  First, what does sick look like?  And why is it that me looking sick would make you feel more comfortable?  Does it make you uncomfortable because if a normal looking girl can get cancer, that means that you could too?  You could.  Anyone can get cancer.  It does not care how old, young, strong, healthy, you are.  You could be a vegan marathon runner and somehow still end up with cancer.  Anyone could have or get cancer.  

And before you go calling people liars, how about you educate yourself and find out the truth.  Put yourself in our shoes.  We have fought, with everything our bodies have, to live and you're looking at us saying, "no you didn't."  Based on what?  The fact I still have hair?

I am currently cancer-free, by the way.  This is me holding my latest scan results (wearing my awesome shirt from Stupid Cancer)!! 
I am appreciative that God gave me this challenge in my life because it has made me so aware of how misinformed people are about cancer and cancer patients.  I'm doing what I can to change that.