Survival of the Twittiest

This week, I had the opportunity to participate in a Twitter chat support group.  The topic was “Coming Out with Cancer.”   One thing I’ve learned from support groups is even if you feel you don’t need one, someone participating in the group may need to hear your story.

My cancer story is simple and did not have catastrophic outcome – as evidenced by the fact that I’m still here.  I was diagnosed at age 40 with a Stage 1 cancer tumor in my sigmoid colon.  Had surgery to remove 12” of colon containing the tumor and it was determined that I did not need chemotherapy or radiation.  Does that make me a survivor?  By default, yes. 

Still got the feeling of the floor falling out from under me that the words “you have cancer” cause.  

Still had to face the 3am overwhelming “What if…” questions needing more information, diagnostic tests and medical conferences; not more internet surfing.

Still had to face the stunned and shocked responses from my family members and friends when I told them the news.

Some people stepped up and performed stellar acts of service.  Some people said ridiculous things, vanished or wanted to tell me about every fatal form of cancer known to them personally.  No matter how often we are in the situation, some shine and some stink, but that’s a whole ‘nother story.

In our family, we deal with awkward things with humor, so be warned.  My mom was with me as my designated driver the day of my colonoscopy.  She was sitting next to me when I got the “your tumor looks cancerous” talk.  I was on Fentanyl – the drug used during colonoscopies causing amnesia and generalized apathy.  Mom was not on Fentanyl.  We’ve since decided that anyone getting that news needs to be on Fentanyl.  Makes a big difference and is highly recommended.

What do you have if 12” of the sigmoid colon is removed?  You have a semi-colon.  I hear groans on that one from grammar Nazis, medical practitioners and survivors alike.  But I’m one of the few people who can use that line. 

Having a brain MRI to see if there were any lesions that had spread was a sobering experience.  Dad took me to that appointment.  When I came out of the room with the attendant, dad asked “Well?  Did they find a brain in there?”  The attendant even cracked up at that one.  Found a brain, but no lesions to worry about.

The hardest part and the part that most people wanted to discuss on this week’s chat was how to break the news to children.  Our boys were 10 and 13 when I was diagnosed – old enough to understand and care, but mostly about how it was going to affect them.  Their 3 questions were  

Q:“Are you going to die?” A:“Not if I can prevent it.” 

Q:”Is it operable?”  A:”Yes. And then we’ll know if anything else has to be done.”

Q:”OK, can you make us dinner now?”  A:”Sure.  Chicken nuggets OK?”

My focus became how to keep the boys’ life as normal as possible, to tell them as honestly as I could any new information and keep their normal schedule/activities, etc. going despite being stressed, exhausted and anxious.  My oldest son and I attended a rock concert two days before I had surgery.  I wanted him to have that memory should anything go sideways in this process.  The boys came to see me as soon as I was out of surgery and awake to reassure them that we were not hiding anything from them.   Brutal honesty seemed to be the best policy at the time.  They still tell me that they appreciated being considered adults rather than protected from the facts. My spouse was honestly not sure he could handle it if I had to have a colostomy.  You think there is ANY chance I WANT TO?   

Thankfully, we didn’t have to find out. 

It has now been almost 8 years since that sobering experience.  I have some lingering symptoms of a shortened excretory system, a few scars and a wealth of experiences to share.  The biggest things I learned is to be fully present when a scary diagnosis is revealed. 

Don’t make the news about you; deal with your feelings on your own time.

Don’t make the patient take care of you. 

Don’t disappear – offer to mow lawns, clean bathrooms, pick up kids - life goes on.  It doesn't stop out of consideration for the family dealing with a health issue.

Those who did not were weaned from my circle of friends.  The people who did are still in my life today to enjoy the afterglow, anecdotes and epic farts.