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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.  

186 comments:

  1. It's insane that anyone would call you a liar. Everyone has their own baggage, so I really dislike (read: hate) when people decide to make sweeping assumptions about people. You've done so well, you're the epitome of a survivor! These ignorant people are merely drops in the ocean; huge kudos to you for writing this gracious, firm post! x

    ReplyDelete
  2. You nailed it right on the head. My hubbie also had colon cancer and because he did not lose his hair, people would look at him and tell him how good he looked. Not all chemo makes you lose your hair but that does not mean your lying. They have come a long way in their side effects. There were days when he could not move a muscle. He just tried to hide that. Thank you for keeping your story going. You are a inspiration to many.

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  3. Well said. I'm glad to hear you are still doing well, I've been thinking about you! :)

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  4. So great to see an update from you. I'm so glad you are still doing well.

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  5. You are amazing! Dont ever change ♡

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  6. I am so disgusted people call anyone with cancer a liar. Thanks so much for this post, and I'm so glad you're still doing well. x

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  7. Great post. So sorry you went through that. Hopefully sharing your pictures and story will make people stop before they say something hurtful to someone

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  8. Woot...way to go. We'll said. People would give me the crazy eye every time I park in the handicap parking spot. Needless to say. If they only new. Keep fighting and God bless <3

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  9. God is an awesome God! All the best to you xx

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  10. Reading through all this, you inspired me to be optimistic in any way, in any thing. I admire you for being so strong. A cancer patient may see a silver lining through you. Please continue to be fabulous and beautiful.

    ReplyDelete
  11. It's horrible that anyone would call you (or anyone else with cancer) a liar. Glad to hear you're doing ok!

    ReplyDelete
  12. "You look so good!" That's why I hear all the time. And I do!
    But still I have two types of cancer, and none of them are cured, yet.
    Keep up the good fight!

    ReplyDelete
  13. You are inspiring. I have Crohn's Disease and run a high risk of digestive cancers. To be diagnosed with cancer so young and have such a bleak outlook, is just unimaginable. You looked (and still look) amazing, but your courage to stand up for yourself and fight (both cancer and the naysayers) is what is inspiring. What an awesome example you are setting for your daughter. I'm certain your family is very proud of you.

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  14. Love you girl,you are more than awesome you're amazing :*

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  15. Way to go.. Keep up with the great job of keeping people informed, you are a great inspiration to me and i am sure to a lot of others with cancer and without. I was diagnosed with stage 4 colon cancer, and went through a lot of what you also went through. Diagnosed at 54 yrs young. 9 mts. cancer free. Keep up with your girly-girl stuff. you are beautiful inside and out. You are in my prayers.

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  16. Absolutely brilliant =) God bless beautiful ;)

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  17. God Bless(ed) you!

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  18. oh wow. I'm so sorry you went through that but even sorrier that people think they have the right to call you a liar based on the expectations have of your appearance. SO shallow. It reminds me of when people want to say "you can't be poor/struggling financially, you have nice clothes/purses/etc" as if you can't shop sales or secondhand stores and you don't deserve nice things...You are so strong though and congrats on being cancer free!! Also- you're SO freaking gorgeous!

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  20. Thanks a lot for this report, you helped me to watch this topic without being scared "to death" for the first time. Yes, there is still a life if we get sick (untill we're not dead, we live), there ist still beauty and strength and love and hair :-)
    Besides, I love your makeup, I will try do to it on my own. Your are georgeous.

    All the best from Germany!

    ReplyDelete
  21. Glad to hear you are doing well.... and well, there are lots of idiots with their idiot opinions who like to share their idiocy with the rest of us. No one should have to "prove" they have or had cancer because they don't fit some fool's preconceived stereotype of a cancer patient.

    ReplyDelete
  22. You look beautiful, even through chemo! I have to admit, I had visions in my head of emancipation, baldness, all the stereotypical stuff. And my mother beat cancer twice, the second time was colon! She didn't lose her hair or a lot of weight, but she was exhausted and I don't think she wore makeup or anything.

    God, I get cramps and I'm too much of a weenie to SHOWER. I know if I had stage iV cancer, it would be Ugly on Parade in my world.,

    So impressed with your spunk

    ReplyDelete
  23. Yeah, you know, emancipation and cancer go hand in hand.

    Emaciation. Bloody auto correct

    ReplyDelete
  24. You call yourself a "normal looking girl", but you're not - you're gorgeous. It shows outside on your beautiful face, and inside in this eloquent post.

    Probably best to feel pity for those who are blessed with good health, yet go to the trouble to inflict pain with their words.

    All the best to you.

    ReplyDelete
  25. Hello!
    You are so brave, God help you in the future!!
    I think that you have a diet you have to follow now. Could you send it to me in an email, pretty please?
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