de*ni*al – noun.  The act of declaring something to be untrue or a river in Africa.

I’ve been giving denial a great deal of thought lately, mostly because I feel like I’m sometimes drowning in a sea of it.  As humans we are constantly in denial, by either denying something or being denied of something.  My boys are the kings of denial.  “I didn’t do it!” is the main catchphrase at our house.  No matter what the question is, the answer is deny, deny, deny.  On the flipside, when asked to clean their rooms or perform some other responsibility that falls on everyone in our home, it seems as though I am denying them of their basic freedoms.  “Seriously, you want us to do THAT?”  It’s sad that they have the meanest mom in the world, but I deny that title on a regular basis.

I’ve spent the last year or so pondering my life with and after cancer on this blog.  The feedback is always so amazing to me.  I am touched by the kind words and support that readers take the time to post.  I appreciate all of you.  But one thing I have noticed; when I talk about being in remission and knowing that the Beast lurks behind me, people get uncomfortable.  It doesn’t matter if I write it or share it in conversation, people balk at the idea that my cancer can return.  “You were only Stage 1.”  “You fought so hard.  It wouldn’t dare come back.”  “You’re such a fighter.”  “I’m sure your oncologist got it all.”  And my favorite from my own internist.  “You’re cured!  Why worry about it?”  The list goes on and on.  Even family members tell me it’s gone.  And right now it is gone.

So if it’s gone, why do I still spend close to $1,000 a year just for blood tests and CT scans to prove what everyone else all ready seems to know?  Why do I put myself through a pelvic exam every 3 months?  It’s certainly not for the fun of it, although I will admit I’ve lost any sense of modesty about them.  And it’s not because I like my oncologist.  Don’t get me wrong, I love the guy.  I’d just rather see him on a social basis, rather than a professional one.  Seems like a colossal waste of time, money and energy to put myself through all this if the cancer’s gone, agreed?

Inevitably, the cost of post-chemo care comes up every time our insurance gets renewed or the budget needs to be tweaked.  When our deductible and co-insurance went up last year, I offered to give up my trips to the oncologist and my CT scans.  After all, the cancer was gone and is not coming back according to my husband.  It seems my testing and visits are non-negotiable when it comes to the budget.  I don’t get it.  If it’s gone, why all the fuss?  The answer is usually something like “Well, it’s just to be safe,” or something to that effect. Hmmm.

I know my risk.  My dad’s side of the family is LOADED with cancer.  My grandma died of colon cancer which has a direct relationship to ovarian cancer.  My uncle had Hodgkin’s Disease and stomach cancer.  I know there’s some bone cancer thrown in there as well.  I took several types of fertility drugs and lived on soy products for years.  Since my tumor was estrogen receptive, my choices for menopause are seriously limited.  There is some research which seems to indicate that patients with estrogen receptive tumors have a slightly elevated risk of recurrence than those whose tumors aren’t receptive to hormones.

When I was diagnosed, I was given a 50/50 shot of 5 years with no recurrence without chemo and an 85% shot of 5 years with chemo.  Of course I chose the 85%.  That many percentage points is HUGE!  Now that I’m post chemo and my oncologist and I have been able to discuss my experience and my family history, my odds have changed a bit.  Given my own medical history and that of my family, I’m actually looking at 75 – 80% for going 5 years and about 65% for making it 10 (making it 10 years get you a big C for “cured” on your chart).  That doesn’t sound so bad, unless you actually get a visual image.

The other day I was rolling pennies with my boys.  I laid out 100 in a line.  Then I took away 25.  The line was shorter.  When I took away another 10, it was looking a bit scary.  I’ve always said I know the odds are in my favor, but someone has to be on the “wrong” end of the line otherwise there wouldn’t be a line.  The cure rate would be 100% and there would be no line to worry about.

I always had a sense that I would get ovarian cancer.  I remember watching a TV show with a character who had ovarian cancer and thinking “I hope I don’t look that bad when I get it.”  Where the heck did that come from?  A couple of years later I got two e-mails with the warning signs of ovarian cancer and thought, “I really need to remember those.”  Why did I think that?  Fast forward to August, 2012 when my mass was found.  I knew, I just knew, it was cancer.  No doubt in my mind.  My oncologist says many women experience this, knowing the symptoms they had were cancer.  He is the only one who doesn’t look at me like some kind of freak when I tell him the story about my thoughts years before my diagnosis.  He always says that cancer’s a funny thing.

I’ve never been in denial about cancer.  Blood clots and port insertions, yes.  Cancer, no.  And despite the reassurances from my family, friends and “fans,” I feel fairly certain it will raise it’s ugly head again – perhaps more than once.  I have spoken with other survivors and they all say the same thing.  Ones who’ve had recurrences almost always “knew.”  The Beast isn’t picky and it doesn’t care what the odds say.  I’m certainly not hoping for its return;  that would be a very sick and twisted thing.  I am being realistic.  Maybe it’s because I don’t want it to come up and slap me out of nowhere.  I was a Girl Scout and while “Be Prepared” wasn’t our motto, I did learn that you have to prepare for every contingency you can think of.  I’ve got the plan in my head.  I know who I can count on.  And cancer will get kicked right back to the curb – period.

I still have lots of things to do.  God is certainly not finished with me and I fully intend to be here to spend time with my grandchildren.  I realize, however, that I may have to be bald a few more times in my life and that’s okay.  If it’s not okay with you, that’s your prerogative.  Just keep it to yourself.  Denial is your reality, not mine.  To me, denial is just a river that runs south to north in Africa.

4 thoughts on “Denial

  1. Chris Denterlein says:

    Praying the beast never shows up again! You are a wonderful writer! I always tell you that, but I’m impressed every time I read your work! Miss you!
    Love and blessings!!

  2. renie ingram says:

    Everyone wants to be positive and give you all the encouragement that they can. I would have said that too. It does not stop what’s going on in your head. If you ever need those hats again, and we pray that you don’t, I have a fresh supply I have just acquired. We will need to find other things to share besides hats though…..I love to read your blogs, especially when they begin with “I hope I don’t offend anyone”.
    Prayers and peace of mind.
    Love you,

  3. Renie – I know you have a brand new perspective on things now and I wish with all my heart that you would never have known that. I’m looking forward to sharing a really great burger and some decadent chocolate with you when you’re up for it. Love you!

  4. ginny bernloehr says:

    Dear Shelli, I’ve read all of your inspiring blogs and met you when you did a program for NWW and still pray for you. Its, cant find the word awesome of your strength and wisdom in dealing with what life has given you.
    You tell it like it is and give hope to many.

    Ginny Bernloehr

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