What has having Cowden’s Syndrome taught me?

I just thought about this today – and knew it was something I needed to write about.  So, here goes:

I’m going to do my best to write about some of the things that having 2 (!) rare diseases has taught me, but for the purpose of this post, just know that I mean both Cowden’s Syndrome and Lhermitte-duclos Disease, even if I don’t mention LDD…

Did getting diagnosed with CS teach me about fear? 

I already have known fear…so, it’s really nothing new to me.  I’ve had some scary things happen in my life (car accidents, other surgeries, etc.) so not to detail all of my past here, I’ve had a relationship with fear already.  We’re good.

Did it teach me anxiety?

The above answer kind of applies.  Almost verbatim.  Basically having the diagnosis of 2 rare diseases didn’t shower me with these new emotions.  I knew them already.

However….CS and LDD has shown me a STRONGER side of these emotions, or a more poignant exposure to them, if that makes sense.  85% breast cancer risk?  Having 2 brain surgeries (crainectomy) a week apart?

Oh you betcha there’s fear there, with an anxiety kicker.  There’s not a day that goes by where I’m not thinking about the next screening, the next MRI, the next medical appointment, whether or not the brain tumors are growing (NO!), or the next scheduled whatever.  There’s a lot of pressure in managing all of this, and I have my life and bills and no money (no job) and other things to manage too!  Sometimes, I do get anxious because I’m afraid I might drop the ball and miss something.  I might miss the next appointment or something…I trust my doctors for the most part.  I’m very thankful for the team I have.  But the thing is – they have other patients.  It’s not all about me (hah!), they have other patients that don’t live in Heather World (haha!) – and they might forget.  They might forget to check my parathyroid hormone levels, or that I’m due for my thyroid scan, or waitWhen am I supposed to have my kidney screening again?

Do you see what I mean?  All these cancers…all these screenings…all these checks…and all these other patients…it’s a lot to deal with.  (I’m being a tad facetious but yet part of this does ring true.)

So while I already knew fear and anxiety, CS and LDD tried to have me know them harder, quicker, and faster.

NOW…we’ll talk about some other things CS and LDD has taught me…

It’s taught me that I need to look at others besides myself.

That I need to Volunteer – I’ve been volunteering in a few different areas.  I am working at a local animal shelter, and I have been going to my nephew’s kindergarten class, and I am tutoring an English Language Learner.  Sometimes, I ask myself, “Self?  Why in the heck weren’t you doing ANY of these things before last July 18, 2011?”

I really enjoy working with my Learner.  And, that’s what I was told when I took the training a few months ago.  That when my day was rough, it’d always look brighter after a session was complete.  And that’s true.  I can see so much growth and confidence in J.  When I started tutoring her a few months ago, she’d hardly speak a few words (for fear of speaking English incorrectly.  I get that, because when I attempt to speak Spanish I fear I’ll say something wrong so I don’t talk a lot.)

But in just these last few months we’ve studied, twice a week for an hour each time, I can see her confidence growing.  We laugh more.  She attempts to say things in English and doesn’t seem to be as fearful anymore. She can laugh at herself when she says the wrong word.  We laugh together, and it’s really wonderful.  I think it’s such a big step for her that she can laugh at herself, too.  She doesn’t take this so seriously and I think that’s great.  🙂

To Appreciate the little things even more – Yesterday I played a quasi game of kickball (soccer) in the front yard with Nephew #2.  He’s going to be my little personal trainer, I tell ya!  We have this big exercise ball that’s pretty thrashed now and normally the kids just play with it in the front yard.  He and I decided to play kickball and as he told me what he wanted me to do (“Kick it as it comes to you” – instead of me waiting for the ball to stop THEN kick it back to him), he then told me a few times later, “Now you’re getting it!” -this little guy is just a miracle!  Well, both my nephews are actually.  But I’m so blessed!  I told Nephew #2 yesterday, “Let’s do this every day after school!” – he was very much on board with this plan.  Sure, I could have read, or worked some more on my home biz, but I needed to be with him.  I needed to run around the front yard for a bit.  I needed to be with him!

I wonder sometimes if I would have stopped to do these things if I didn’t have CS and LDD?

Who knows.  I guess I need to keep refocusing my thoughts on what IS.  That’s a big thing these 2 rare diseases are teaching me…keep the focus on WHAT IS.  That’s sometimes harder than it looks.  But I’m trying.

Months ago in church I kind of alluded to this (about learning lessons), that I wished it didn’t take brain tumors and genetic conditions to kick my trash to learn these lessons.  But that’s not what happened.  I don’t have my “old life” that I had July 17, 2011.  I have a new life – that I am trying to embrace. Good thing I’m human and I have connections.  Good thing I know I’m not alone.  Good thing I have my family.  Good thing I have the Internet to reach out to others who understand the fear of the unknown.  Good thing I know some things…because with CS and LDD there’s so much unknown.  It’s nice to have a feeling of some control, no matter how small it may be.

And, I’m pretty sure there are some more lessons I’m going to be forced to learn quickly at the hands at Cowden’s Syndrome and Lhermitte-duclos Disease.  (This is part of the WHAT IS I wrote about in the last paragraph.)

So what do I get to do in the meantime?

I’m still going to write.  And continue therapy.  And continue to volunteer and look for a job.  Continue to pray and give thanks for what I have.  And when the rough times comes (there are some coming soon, I can tell) I have to just white knuckle it and hold on.  I’ve come this far…!

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4 thoughts on “What has having Cowden’s Syndrome taught me?

  1. Wow!

    Feels amazing to be helped by nieces & nephews, doesn’t it?

    A couple things, though; I don’t know about the two conditions (if something about them REQUIRES constant checking-&-rechecking), but if I were you I’d do my best to totally ignore them … i.e. don’t tease them into thinking you WANT to pay attention to them (sounds like I’m talking about ‘those annoying neighbor-kids’ … maybe that’s another way to think of the conditions!)

    Also, I’ve heard good things about ‘anti-angiogenesis foods’—foods that encourage your body not to form new blood-vessels unless you really need them. (And you know cancer feeds on the blood you give it; you don’t give it blood, it starves.)

    • It sure does feel great – my little guys are miracles and they absolutely light up my world.

      To your point – yes, these 2 genetic conditions absolutely REQUIRE checking/monitoring/rechecking to make sure there’s not a cancer occurrence. My body doesn’t know how to stop making tumors, and in turn, those tumors can turn malignant if not caught early. But I do like your idea of not teasing them into thinking that I want to pay attention to them. Hence my volunteering and working when I can. I just wish there was more of either of those!

      Please share about the anti angiogenesis foods…I’ve not heard about that!

  2. Great post and I cannot agree more. Living in the moment, dealing with what is (rather than what was or what if questions) and finding new ways to engage with people and the world around us resonate completely with me as well. Oh yes, and to be thankful. Strange as it may sound, but facing our (yes,I mean mine as well) fears and that pest called anxiety, also open windows to see what and who we do have in our lives!

  3. Pingback: My First Blogging Award | The Bottom of a Bottle

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