Telling My Son...

My Oldest…

One of the first things out of my mouth, after being told I had a 3 cm mass on my rectum, was “but I can’t have cancer…I have three little kids.”  And all I could think about was how this was going to impact their lives.  I started calculating how long I wanted to live so that my kids would all be grown.  I did the math over and over and over.  Because I didn’t want them to grow up without their mother.

Now, my two youngest were way too little to understand what was really going on.  They were interested in Mommy’s boo-boos and still are to this day.  But then there was my oldest.  And although he was not old enough to truly understand all that a cancer diagnosis entailed, he most certainly was old enough to understand that his mother had cancer. And that it was super scary.

So, as per my norm, I started looking for books to help explain what it meant that his mother had cancer.  And what I found was quite upsetting.  There were NO BOOKS on any kind of mom cancer except breast.  And for a “woman’s cancer”, there was a gazillion options.  I even just looked now, just to make sure I’m not crazy.  NO BOOKS.  And even when a book looks like it will be non-exclusive to breast cancer on the outside,  the inside was all about the boobs.  Now, please do not for one second think that I think that colorectal cancer is worse than breast cancer.  Nope, not one little bit. As a matter of fact, the “worst” type of chemo is called “the Red Devil” and is known to be used to treat breast cancer. But what I found disheartening was how limited the resources were for mothers with other types of cancer.  It actually reinforced this weird idea in my head that women aren’t supposed to get colorectal cancer and that it was a “man’s disease.”  And before I was diagnosed, I had no idea that I even held that belief.

It was here when I realized that I was sort of on my own to tell my son.  I had to figure out a way to explain it that was real but not so super scary.  So here’s how the story came to be.

chemo port
chemo port in human

Now, when you get most kinds of chemo (I can’t say all, but I feel pretty confident about most), they tend to put in this thing called a “port”.  It goes right near your collar bone (at least mine did) and is “easy access” to the vein where they pump the drugs.  It’s literally a little tube that they fit into a vein with this port thing tucked under your skin so that all they have to do is stick the needle in and voila!  A direct line to the vein! 

Chemo infusions take a long, long time and since they happen with airtight regularity, a port helps make it easier for the patient (because IV’s suck and veins blow) and for the nurses.  Literally all they do is clean up the spot, spray some numbing spray, and then stick.  Then they put on a special bandage that remains until the infusion is over.  But we’ll talk more about chemo infusions later.

Ok, so I knew I was getting this port and I knew that I was getting toxic medication pumped into my body.  And I knew I had to tell my child.  And it was horrifying.

So I thought and thought and thought.  And I suddenly had an ah-ha moment! Suddenly, the external round bump that is caused by the port under the skin reminded me of a doorbell.  And that made me think of (don’t ask me why) Bilbo Baggins’s, the infamous Hobbit’s, front door.  The doorknob was a perfect circle right in the middle.  The clarity of this was so intense that I went with it.

And here’s how the conversation went:

Me:  Hey, remember when I was growing the babies in my belly? 

Him:  Ya….

Me again:  And how we wanted them to keep on growing?

Him again:  Ya…

Me yet again:  Well, sometimes things grow inside of us that we don’t want to grow.

Him (suspiciously):  ok……

Me (nervous but playing it off):  So I have something growing inside my butt that we don’t want to keep growing.  So the doctors are going to put this amazing magic door in my chest so that they can put medicine in me to make the thing stop growing.  Isn’t that sooooo cool?

Him (nervously):  Does this mean you’re going to die?

Me (sad and terrified but holding it together):  Oh no, no, no, no, no.  It just means that we need to make this thing in my butt stop growing is all.  Remember how I’ve been pooping kind of weird for a while and how I haven’t been feeling well?  So the doctors are going to give me medicine to fix all of that.

Him (cautiously):  So you’re NOT going to die?

Me (relatively relieved):  Kiddo, that’s the plan.

I talked to my own therapist (because everyone should have a therapist.  AND for those of you that work with me, she would be your grandtherapist) who has pretty extensive experience with kids and adults alike, said that she thought the explanation was pretty awesome because it was true but eliminated much of the scare factor.  I felt pretty good about it too.  Until…

I had to go to a cancer training class.  Now, really, it wasn’t a class at all.  It was just me and some lady going over this ginormous binder of what to expect during cancer treatment.  The amount of information conveyed in that book was so totally overwhelming and so robust that I honestly don’t think I remembered any of it.  Except that she thought the story I told my son was a bad idea.  She said, “We here at the cancer center believe in transparency.  And withholding the word “cancer” is not the way we recommend.”

Let me start by saying this lady was not gentle.  She was not warm or inviting or sweet.  She was bitchy and definitely made me feel, even before this part of the program, that I was just a task that must be gotten through.  She was pretty much my only negative interaction during my entire cancer experience. 

Her comment of “we here at the cancer center” made me feel very excluded.  She made me feel bad about my decision.  She made me totally question my judgement.  And she made me rethink everything that I had just done.  And while I am pretty good at trusting my instinct, she basically pissed all over it.

So back to my therapist I went.  I told her what happened, and she was not very pleased with this lady.  She encouraged me to trust my instinct and to believe in my relationship with my son.  She made me feel infinitely better. 

But still, the mean lady’s message was clear.  And one thing she said really resonated with me.  And that was “he’s eventually going to hear the word cancer in relation to YOU.”  And I realized that she was probably right.  So here’s how the second big disclosure conversation went:

Me:  Hey dude, do you know what it’s called when something’s growing inside of us that we don’t want there?

Him:  Uh….no…..

Me (sick to my stomach but playing it off):  So it’s called cancer.

Him:  pause to think

Him (again): Sooo…does this mean you’re going to die?

Me (sad and terrified but holding it together):  Oh no, no, no, no, no.  It just means that we need to make this thing in my butt stop growing is all. And that it’s called is cancer.  Me and Daddy actually named it Clancey.  Isn’t that funny?  Clancey the cancer?  (insert nervous laugh here)

Him (cautiously):  So you’re NOT going to die?

Me (relatively relieved):  Kiddo, that’s the plan.

And on with our day we went.  I love my boy.  And my boy loves me.

So keep mining your light and keep moving through the world on the wave of love that lives inside of each of us.  And please get your colonoscopies as early as you can.  Early detection is truly life saving.