I never wanted to be one of those people who got sick.  I never wanted to call attention to myself.  And I sure as hell didn’t want 2 brain tumors or a genetic condition.  Really.  I just wanted my “Happy Life” ~ The one where I meet a Prince Charming, get married, have a family, a career of some sort, and life a happy life.  Get it?  Happy Life!  But then last summer, things went awry.

In these last 17 months I’ve had to find my way anew.  Figuring out how to live my life again.  My world has turned upside down.  I’m figuring out who really are my true friends, and who aren’t.  Figuring out what kind of career I can keep up, and what I cannot.  What type of people were in my life – and who are now.  And, to get to the nitty-gritty of it all…the figuring out could be called acceptance.

I don’t quite accept yet that I have Cowden’s Syndrome and Lhermitte-duclos Disease.  I mean…I SAY I do.  I talk about it, I write about it, I search about it at times, because part of me feels that the more I do this – the more it will actually become ingrained in me.  I hear people say, (rather, I read it on Twitter) that they have “brain cancer but it doesn’t have them”.  So, I have CS and LDD, but it doesn’t have me.


Yeaaaaaaaaaaaaah.  Um.  No.

I’m working.  I’m trying.  I’m struggling.  I’m doing the footwork.  It sucks, but I’m doing it.  And you know what else?  I think part of the reason I am fighting the acceptance part is because I don’t feel whole.  I don’t feel like me.  I don’t feel worthy, if that makes sense.  I feel damaged.  I feel broken.  And, I still have the great wish to be married one day!  I can’t help but worry that what man will want to take on all my designer baggage?  (HAH!) – Granted, he’ll most likely have a full set of his own…but still.  I just can’t help this nagging feeling in my head.  I have a lot going on.  Too much actually for me to handle most days – but I do it.  I get up out of bed and I face my day.  I face brain tumors and breast MRI’s and oncology appointments head on; as best I possibly can.  Not always perfectly as we all know.

So, I have tried to act/ignore/forget that I have brain tumors.  Part of this ignoring has to do with the headache (I think) that I had this last week or so, (that thankfully finally broke last night).

I’m on 2 medications (Gabapentin and Topamax) to help keep the bad headaches away.  Last summer, after my 2nd craniectomy, I had to get admitted a 3rd time for a horrific headache.  (This was on the pain scale of 20 it was that bad.)  Just awful. 

Since then I’ve been on these meds.  But see…I don’t WANT to be taking these meds.  I’ve fought it.  At least I’ve tried to…

Every time I’ve seen Dr. D (my neurologist) since last summer I’m forever asking him when I can start to wean myself off of them.  One of the meds causes weight gain, and I just don’t want to be taking on anything that associates me with the brain tumors.  And on my own I have weaned myself from them over the last 3-4 months or so.

That probably wasn’t a good idea.

But I learned a lesson and took the full amount today – and will continue to do so.

Once I tell Dr. D. that I had the same type of headache that I had last summer I’m sure he’s not going to let me wean off of the medication.

And I guess I don’t want to.


3 thoughts on “Denial

  1. I took topomax and many other meds for years. Though I can’t recognize the depth of your diagnosis I understand a tiny sliver of what you are going through. And the feeling bond being broken and hoping your dreams of love and life can still come true. From just the little I’ve read I can tell you are much more than the sum of what you have. You can do this. I am wishing you luck and walking alongside you. You got this. Thanks for sharing your journey with me!

  2. Heather….I want you to think about what your life would be like today if your health was perfect. Would you feel whole? Please message me and let’s talk more about this…

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