One step at a time

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

celebrate

The surgeon said that the hamartomas are there.  They are large, but they are stable.  Stable is a nice word.  So, because they are stable it implies they are benign.  This is another nice word.  The game becomes seeing if they remain stable.  So, in 6 months I will have another MRI.  If they have changed – it comes out.  If they haven’t we can continue to talk about keeping it.

6_months

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s.  Is it by coming through with the most organs still intact and cancer free?  This is such a strange, relentless disease.  It’s research, while still in its infancy is coming.  But,  I have to wonder how much more they will know a year, or 10 years from now.  And, whether I will like any of it.

We are waiting.  And we know that we are not alone.  We are waiting for Meghan’s results, and its nail biting, agonizing waiting.  But, Felix and I talked tonight and wondered what news would make us happy.  There was no easy answer.

please wait

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous.  They had scored a 3 out of 5 on some scale they use.  He told us they would turn.  We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious.  But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later.  Tomorrow will mark an agonizing 2 weeks since we went for this sonogram.  Waiting.  Worrying.  Wondering.

what if

When they tell you its “when,” not “if,” it changes things.  No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome.  It’s almost like a time warp.  A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

time-warp

Six months seems to be all you really get.  Well, now what I have lost a few organs, I get a year on those follow ups.  But everything else is 6 months.  For both of us.

I tried to sync them up.  So that maybe the worry wouldn’t seem continuous.  But it hasn’t worked yet.

I try not to think too far ahead.  You know what Mom says about planning anyway.

I-plan-God-laughs And to think about this in constant 6 month cycles, well… forever.  It’s a little too much to manage sometimes.

So, we take it one day at a time.  Sometimes one hour.  Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

neverending road

14 thoughts on “One step at a time

  1. So happy about your news and will continue to pray for the best for Meghan’s results! You always seem so calm, I am drawing from your strength!

  2. Yay for getting to keep your spleen 6 more months! I think you are 100% entitled to feel this is all too much to manage sometimes, because it is! You manage the best you can with a positive attitude that I am sure rubs off on your daughter.

    I want you to know I’m always wanting to comment on your blog, but I usually view it from my iPad. My WordPress app hardly ever works, and when accessing it from Safari, there is no “post comment” button, so I type out my comment then can’t submit it. It is only on your blog — strange.

    1. Well I love hearing from you when you do get through. Thanks for making me feel like I am doing OK my my girl. It helps to hear a daughter’s point of view…

      Hope you are doing well.

  3. Hi Lori….good news about the spleen. Just curious- why doesn’t (or didn’t) the dr. remove Meghan’s thyroid while it is still in the pre-cancerous stage?

    1. An excellent question we have bounced around so much. That is why there really is no “good” answer here. They like to leave it in for development as long as they can, contending thyroid cancer grows slowly. Little consolation for my husband and I. We are anxious and on edge, and can’t ever feel relaxed – even when they say wait 6 more months. Anxious to hear what these results bring.

  4. I continue to keep Meghan in my prayers for good results. I have Cowden’s Syndrome too and am waiting for my own thyroid blood test results. Glad you are able to keep your spleen 6 more months. January starts the monitoring again for me too. This week I have MRI for colon cancer and see a new onc. It is all ways something.

  5. This is my world since the end of 2008. I don’t have a blog, not sure how to start one. Really didn’t think I had that much to say that anyone would be interested in hearing. But yes this has been my world to for a while especially since they upped the screenings. So how do you start a blog? Say hi to Meghan for me. She sounds like a great kid and we have lots in common. I have arm too. See the surgeon the end of January, so I understand.

    1. Tami – You have LOTS to say…really really! (I’m Heather Z from Twitter) – sorry to hijack this comment. 🙂 I’m so encouraged that the Cowden’s Syndrome world is expanding. It gives me great strength to know that I’m not alone in all of this. I’m glad to have connected with you both!

  6. I have AVM too. Thanks Heather Z. If you or Jessica could PM me about how to start a blog I could look into it. Jessica said that she is well know around her hospital. I have heard that too. I do have questions for both of you, and you would be interested in what breast cancer was like in 2002 not knowing about Cowden’s. I am glad to have found you all to! Thanks

    1. Tami, at Heather’s urging I remember starting my blog by going to wordpress.com and reading a little about it. Please consider it. It is so powerful to connect with others “like us” and I get sick of just reading about me and my girl! 🙂

    2. Sure thing! Or – would you be able to send me your email? (zheatherchamp {AT} g m a i l [DOT] c o m) and I’ll email you. But BeatingCowden’s put it right…if you go to wordpress.com and then follow the prompts. But send me an email if you can and let’s chat OK? I’d love to help you. Also…there’s another “like us” (with Cowden’s) who has a blog also….

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