Sometimes I forget

Sometimes-I-Forget

Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me.  And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. mri_machine Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled.  I fought hard for my spleen.  I felt I owed in to my emptying insides, currently missing my uterus and ovaries.  I “won” a 9 month reprieve.  And not the sentence is up for review.

So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers.  Papers that, well between Meghan I, I have lost count of the number of times I have completed.

Any chance you might be pregnant? Asks the male technician who brought me back.  Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No.  Not that I ever WANTED to be pregnant again, but you know sometimes they could read…

Any implants in your body?  Metal, I asked?  No, ANY as he clutches the paper I spent 15 minutes completing – unread.  Yes, I have breast implants – a double mastectomy 2 years ago.  I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt.  Not even a smile. no they aren't real Why are you having this exam?   By now I am ready to scream JUST READ!  But I know better.  I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.

HOW DID YOU FIND THOSE?  asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors.  So they were found accidentally during another scan.

Oh.

That was the end of the medical talk.  Maybe the words “Cowden’s Syndrome” stumped him.  Just as well.  Directions on what to take off and what to leave on.  Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen.  (and I have seen quite a few.)  Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer.  I felt a wave of nausea and I am not typically too freaked by these.

“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.

 Not sure if that was a backwards compliment.  Thank you ISAGENIX – I think. isalean-bar-chocolate Grateful I had held my tongue it became apparent that the non-reader and I were in this together.  As he told me to lay down so he could start my IV.  I sat straight up.  My daughter gets a few things from me.  I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body.  I laid down, closed my eyes and kept them closed the whole time.  I am pretty sure my nose would’ve been almost at the top.

And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing.  Breathe normal.” breathe stone My mind wandered.  I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery.  For so many reasons I have blocked the thought.  But, now its too late.  It’s like telling a secret.  The images have been shot.  The report will be read next week.  The reality that already is has been exposed, and I just get to wait and see.  Cowden’s Syndrome.  We grow things.  It’s what we do.

I am grateful maybe, for the insane pace of life.  For the full time job.  For the daughter who swims, and has PT and doctors galore.  For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now.  For the paperwork that keeps me on my toes, and sometimes drowning a bit.  For the letters that need writing, and the never ending list of phone calls that need to be made. time struggle I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday.  So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new.  The car is safe.

So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page.  Phone in hand immediately calling my bank.  Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.

Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. wind After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome.  I am always sure Cowden’s Syndrome doesn’t have me.  There are too many other things vying for my attention. breathe As the non-reader said, “Breathe in… Breathe out…. Stop Breathing.  Breathe Normal.  OK your test is finished.” HA!  If only he knew…

7 thoughts on “Sometimes I forget

  1. You’re awesome.

    (Disclaimer: Now, if you’re anything like me, those words might rub you the wrong way. When I was recovering from the brain surgeries many people told me, “You’re so strong”, blah blah blah. I don’t say that to brag, only that it bugged me because I was ONLY DOING THE ONLY THING I COULD. I was having brain surgery because I HAD TO. Not because I wanted to prove my strength to the world. I hope you know, deep within your soul, that you are awesome. Really and truly. No bragging. No fanfare. You just are. And I mean that sincerely.)

  2. I agree with Hopeforheather, it’s a fact. You are awesome. Just wanted to let you know that I read every post from the blog since I discovered it and it’s been helping me a lot. There is a new FB group for French speaking quebecers with rare diseases and I am alone with a PTEN mutation. Yep, just me. So your blog gives me confort and peace and helped me feel less alone with my struggle. So thank you.
    And those guys working with the MRI machine just don’t read anything, don’t they 😉 Same here!

      • Hi! It looks like I am the only one in Quebec (it’s a group for French speakers) I will look at the website, thank you! I started chatting with a young woman from Alberta today 🙂 it was great !

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