professional light chaser

the blog

the one where I discuss cancer and my health




This post is such a long time coming. I've been meaning to update everyone and let them know how I'm doing, but to be honest with you?  It's not an easy subject to discuss.  Cancer can turn off so many people and just saying the word, well it can suck the fun out of a room.  I know.  I've done that before.  And brides?  Potential brides who may read this blog?  HELLO!  Who wants to hire someone who may or may not have a reoccurrence of cancer?  It's just icky stuff.  I get that.  I really get that.  But because I know that KNOWLEDGE IS POWER, I feel like I need to reach out and share what's been going on in my life lately.  Many people when they see me ask how I'm doing of course, and then they lean in and whisper, "you know, with the cancer?"  

So, here I am, answering that question and more.  And if a potential bride is reading this, please note:  "I can so FREAKING PHOTOGRAPH YOUR WEDDING, with our without cancer.  So potential bride?  You'd be CRAZY ASS STUPID not to hire me because, HELLO!  I'LL BE FINE BY THE TIME YOUR LOVE FEST ROLLS AROUND".

And I will. I really will.  I will be fine.  Because I'm NED.  

NED?  What's that?

They, as in medical doctors, at least my doctors, no longer use the term CANCER FREE or even REMISSION.  Instead?  They call it NO EVIDENCE OF DISEASE or NED, as I will kindly refer to him.  I'm chasing NED.  I LOVE NED and want to sleep with him forever!  No offense Devin, but it's true.  NED is who I LOVE.  I need him and want him and will keep him forever, if I can. 

Since my treatments ended late February, 2014, I've continued to have scans, scopes and blood tests periodically every 2-3 months.  It's part of the "hunting for NED" game.  I've discovered that I have low platelets.  Way low, but not so low I'm bleeding internally while I walk around.  Yep.  Did you just read that?  Some people do.  They literally walk around and bleed internally and they are not ZOMBIES.  Just freaks me out to think about that.  I learned that it is pretty typical in the first year or so after the kind of treatment I had to have low platelets and low white blood counts, which I also have.  However, I also learned that you are supposed to bounce back and things return to normal.  Which I haven't done.  So, earlier this year, my doctor ordered did a bone marrow biopsy which was super fun!  NOT.  And that came back negative.  WHEW!  You see, once you've had treatment for cancer, your odds for a secondary cancer increase because your immune system was basically shattered during your treatment.  It's like a catch 22.  You need the treatment to kill the cancer your currently have, but guess what?  Here's another one!  BAM!  

But after testing all year, me and NED are still tight.  Yep.  We are rocking along in our honeymoon stage TIGHT.  

Here's some things I've learned since being diagnosed with cancer.

  1. Life is short.  When you receive a diagnosis like this you are instantly sucked into a vacuum where you see what matters more clearly then ever.  So much of THIS here just doesn’t plain matter.  Who cares what we are wearing, buying, eating, etc.  Life is too short to not be happy and LOVE one another. The same feeling happened once I had my first child.  You become self-less and realize the world is so not about you.  BIG things center us and make us realize how important life is.
  2. Cancer sucks but it can give you gifts as well.  I’ve learned so much since I was diagnosed.  So, SO MUCH.  Much of it medical and health wise, but it also gave me the gift to decide what really matters to me.  When you are dealing with intense stuff, intense stuff happens.  You either pull together or you pull apart.  My family?  We pulled together.  
  3. The mind is a powerful thing.  It really is.  If you can keep a positive feeling or thought going for just a minute or two, it can heal you and change your outlook on the day.  When I wake up, I start praising God for the fact that I’m still breathing, or sucking air as Devin calls it.  That’s a big thing!  I choose joy.  I really try and choose joy.  
  4. Food Matters.  You are what you eat.  After researching colon cancer, I realized I’m a big reason I got sick.  If you put crap in, you will get crap out.  So, I changed my diet and ate to live.  I’m a vegetarian for the most part, and eat a butt load of veggies each day.  I”m not sure why cows are so slow and sloth like, because HELLO!  Veggies give me energy and make me move better!  We seriously don’t eat well in this country.  I make it a point to make sure I eat well to give my body the chance to be well.
  5. Day by day is the only way to roll.  I don’t think God really cares about the end result as much as he does your behavior day by day.  So, wake up, find your smile and realize that the idiot that is pissing you off is loved by God just as much as you.  Just as much as you.  Start looking people in the eye and loving them with your mind.  They tend to not piss you off as much if you think about them in love.  This really works!
  6. Doctors don’t know EVERYTHING.  You are the best doctor for yourself.  They have 100’s of patients and don’t have the time or energy to research as much as you do about your disease or cancer.  So arm yourself with a good group of peeps.  I belong to several facebook groups that help immensely when trying to get answers and solutions to problems I was having.  Colontown on facebook ROCKS!!    Plus there’s the coloncancer.org website and loveyourbutt.org.  All are great resources that I still use.  Help your doctor out by staying informed and ask questions.  And really, there are no dumb questions.  Not when it comes to your life.
  7. THINGS don’t matter, PEOPLE DO.  We are the body of Christ.  We truly are.  And when we fill our day with people, it makes us and God happy.  This is not always easy when you are feeling bad, but I learned that if I would get my ass off the couch and move and walk and talk, I felt better.  People aren’t meant to be alone.  They are meant to help each other.  
  8. Music is POWERFUL.  Just putting on the right tune can totally change a mood.  I know it works with me!  I have playlists on my iPhone that are geared towards moods and activities.  In a bad mood and whining a bit?  Change the playlist.  Optional activity is dancing.  Sometimes you just need a dance party.  You really do.
  9. People don’t like to talk about butt holes or colons or crap unless you make it funny.  It’s a messy discussion and embarrassing I guess.  I get that.  No one likes to discuss the fact that colon cancer involves crap and parts of your body that aren’t sexy.  But it’s the 2nd leading cause of cancer deaths.  More people die from it then breast cancer.  HELLO!  I was young.  My tumor had been growing in me for 5-7 years.  That’s a long time folks.  And if I had caught it earlier maybe I could have saved myself some awful chemo that caused some major damage to my body.  Neuropathy, scar tissue damage, eye sight deteriorting, etc.   Poop and farting are funny in general and I could tell you a million exploding poop stories that involve me and Target, but I will save that for another blog post.  STAY TUNED.
  10. I’m lucky.   I truly am. There are so many people suffering and hurting.  So many others with stage 4 and living on chemo the rest of their lives.  And that’s just it.  It’s all about LUCK.  We are all just playing the game of life and dealing with the cards we’ve been given.  I’m lucky because I get to stop taking treatment, and my treatment?  It worked.  I've met so many others that it didn't work. I've made friends through this that have died already.  They too were at my stage, but they didn't make it.  Every individual has a different journey and a different path.  Sucks for them, doesn't suck for me.  Why?  It's just luck.  It truly is.   because it worked on me and my cancer.  Sure, I’ll always be thinking about it and wondering what next?  But I’m lucky.  

Earlier this year I found this quote from a colon cancer victim's blog I follow..  This is someone that is stage 4 and dealing with preventative chemo the REST OF HER LIFE.  She's dealing.  She’s taking it day by day.  She’s living what I’ve learned and living it well.  I’l share it here so that you too can feel lucky.  

Living with cancer is a marathon, not a sprint.. That about sums it up. You have to pace yourself. You have to accept what you can do and let what you can't do go. Having parts of your life taken from you against your will and accepting this doesn't come easily or quickly; but the sooner you can come to terms with the changes, the quicker you can go about enjoying those things that are still within reach. And of course this is a constantly changing scenario. As time goes on, cancer takes more and more and gives back little. Having lived with cancer for almost seven years, I feel like I'm a bit of an old pro at it. After awhile, it almost becomes a game. How much can I do and still have quality of life? How much can I trick the cancer into letting me do more without paying the price of fatigue, illness, blockages and pain? It's an ongoing challenge. Some days I win, some days I don't.

Me?  Today?  I'm winning.  


Kristin BednarzcancerComment