Don’t forget…

Today’s appointment wasn’t too bad, if I’d thought better about it I would have known today wasn’t going to be all that major.  But, still.  Everything about Cowden Syndrome is major, so what the freak do I know about all these appointments, anyway?  I guess my point is I shouldn’t be downplaying my emotions.  I’m deserved of a freak out day every once in a while.  Anyway, on to today:

Basically today’s appointment was to check in and make sure I wasn’t falling through the cracks with paperwork, referrals, approvals, etc. on the esophageal mucosal resection (or, getting a 2nd opinion on my esophagus and innumerable polyps.)  So, nothing really happened today.  :)  Whew!  Doesn’t mean that I’m out of the woods and I know that, but I did work myself up for nothing.  Eeeesh.  Oh well, at least I know that this oncologist is working on keeping the ball rolling on my behalf.

Another thing I forgot to write about was this test I am having next month called a PEM scan.  Dr. S said this is kind of a “two-for-one” scan because while it checks my Dairy Queens for cancer, it also checks my entire body.  And, we can’t forget that I’m 85-something % lifetime risk of breast cancer.  So, while some doctors may say, “esophageal cancer isn’t on the books” (which the first G.I. doctor did who didn’t even want me to have the freaking EGD in the first place!) we just can’t forget.  Cowden Syndrome never lets me forget cancer.  Never let’s me forget anything, really.  And, just because there’s “not a lot of data” on esophageal cancer doesn’t mean I won’t/can’t get it.  It just means it’s not too common.  And, we all know what that means.  Wait.  I don’t even know what that means.  No one knows what anything means with Cowden Syndrome.  I just do the best I can with what I have.  Plain and simple.  So, please.  Bear with me when my emotions go up and down…I’m trying.

And all this means I’m due a freaking vacation.


Face the music

Sometimes, I don’t care for Cowden Syndrome.  I don’t care to face all the organ stuff that comes with it, you know?  Well, actually…I never care for Cowden Syndrome, except that it’s connected with me some amazing warriors who know what this life is like.  Sometimes, I just want to stay in the bed with the covers over my head and wish for unicorns and rainbows.

So this morning…that’s what I did.  Missed church and everything (awful – I know).  But, my body and mind were calling for it.  I don’t want to go to the surgical oncologist tomorrow and hear the words, “Esophagus, cancer, resection, polyps”, etc.

I don’t know how to end this post tonight; I’m scared of what my future holds with Cowden Syndrome and I’m scared about tomorrow.  I try to be positive most days, but tonight I’m on my pity pot and that’s where I’ll be ’till tomorrow, if you need me.

Call it a day

Sometimes, when you’re at a new doctor appointment and you hear the words:

it’s best to clear your schedule to go home to be with your family.


So I did.

Betcha’ you can’t spell it backwards!

Sometimes having Cowden Syndrome is a huuuge drag.  I mean, a big freaking drag.  Wrought with doctor appointments and scans a plenty, but that’s the nature of the beast.  To, “make sure I’m watched closely if something arises.”  You know, it’s funny because just last week I was thinking that things had been pretty quiet lately on the medical front.

Dun dun dun…

Oh, and I also want to add:  In case any of you are wondering still if I’m using Cowden Syndrome and Lhermitte-duclos Disease as an excuse to not live life, or why I don’t schedule all my appointments during the summer so I can teach, this is why.  When things come up, they come up.  I can’t say to my oncologist, “Oh sorry.  This isn’t convenient for me.”  I have to make my schedule conform to their schedule, plain and simple.  That’s just how it works when you have a hereditary cancer syndromeDeal. With. It.  (This is mainly for my ex-friend who verbally attacked me a few months ago with all this garbage.)  :)

I saw my oncologist on Friday…

  • I had a kidney ultrasound on Thursday; the last one I had was April 2014.  That one was unremarkable from what I remember.  This one?  Not so much.  Dr. L said I have a lump/bump on my left kidney.  She didn’t mention the “C” word initially, but when I asked her about it she said she didn’t know.  She named all sorts of things it could be (even technician “technique”) but I find that very interesting when the radiologist named it in her report.  An angiomyolipoma.  I’ve been told by a few people that lipomas are usually benign, and that’s a big sigh of relief.  But, I’m really really really really really trying to not turn myself into a pretzel.  Worst and best case scenarios, right?  I think I was given all of it, but the little inkling in the back of my mind is nervous.  Let’s be honest.  So, my doctor is calling for a repeat kidney scan this coming Thursday.  My heart is beating fast, but I’m remembering to breathe.  Breathing is the only thing I can do right now anyway.
  • Dr. L is sending me to an oncological surgeon because of the EGD I had a few months ago.  I had “multiple polyps” in my esophagus and I guess that raised a bunch of red flags to some people. (Ha.)  I’m not sure what this appointment will entail, but all I know is next week I’m going to be super busy a just a tad nervous.  Overwhelmed?  Well, maybe.  But, I just can remind myself this isn’t brain surgeries and I “got this”.  :)

The moral to this story is Cowden Syndrome sucks rocks, and it manifests so differently in so many people.  I have LDD, but not everyone I know with CS has LDD.  I may/may not have kidney issues (it is 33% lifetime risk of kidney cancer BTW with CS), so whatever will be will be.  I say that today with all honesty and openness, but I don’t know if I can hold that till Wednesday morning.  We’ll see.  The point is that I can’t give up.  I won’t give up.  I guess someone can be both scared and peaceful at the same time?

Physical Therapy 4, or what I like to call Frustration 101

I missed writing about Physical Therapy 3 last week, so we’ll just have to call that a wash.

Just got home from P.T. 4.  I’m never not amazed at how much it takes out of me.  Physically and emotionally!  So much stuff.  So much balance.  So much brain.  So much frustration.  I want to take advantage of every moment I have there, for many reasons.  But, the main one is that I want my balance to get better.  And, I think that in just these last 4 visits I have seen some progress.  Of course there are variables, whether I worked before hand (I did today) and things of that nature.  I felt a little run-down going into the appointment and suffice to say, I am even more run-down now!  P.T. is hard!  But, I guess it’s a good run-down.  :)

First the P.T. had me get on a stationary bike type thing to get warmed up.  I really liked it and remember thinking, “Man.  Sure would be great to have one of these at home!”  Ha.  Here are a few of the exercises he had me do:

  1. Balance on a Bosu ball (upside down) doing squats
  2. Stand with my thumb extended in front of me, moving it left to right and following it only with my eyes (very hard to do and hard to not move your head with your eyes!)
  3. Stand on foam rubber square with one foot in front of the other.  Balance, and go.  No hands.  Eyes closed.  (Yah, right.)
  4. Stand on one foot at a time, while throwing a ball into a net type thing.  This is probably one of the hardest things for me to do (besides the Monster Walks <?>) because 2 things are going on at the same time.  Balance on 1 foot without falling down.  Throw a ball into a net.  Do them both together.  The P.T. said he wanted me to do 5 in a row without dropping my other leg.  For a while (5 minutes.  Seemed like 5 hours!) I could do one throw, lose my balance.  Start over.  Rinse and repeat.  And, let me say something here:  I am not sure why certain people go into certain professions, but I am very lucky I got placed with this P.T.  He is outstanding at his job and I have found I look forward to going and seeing him each appointment.  Certain people excel at what they do.  He is one of these people.  He is very complementary (not in a condescending way) of how good I am doing with all of this balance stuff.  He hasn’t mentioned the “P” word (progress) but I think he may seem some small amounts.  And, he was going to say something earlier and I said to him, “Hold on.  You’re going to make me cry.”  Not in a bad way mind you, but in a I-can’t-believe-I-had-2-brain-surgeries-and-still-have-2-brain-tumors-and-here-I-am-today-doing-balance-exercises.  I know I have major PTSD from the surgeries still.  I know it.  I am working on it.

So, while I am mouthing off saying, “I can’t do this.  I can’t do this,” (because I really don’t think I can) but trying to laugh because I am uncomfortable (uncomfortable because it’s hard) I end up doing what the P.T. wanted and throw the ball 5 times into the net without falling over!  I did it!  Never did I imagine this day 4 years ago.  I guess that’s why I am so thankful that I have this blog still, because I am able to look back and see the scary times and see why it’s so important to write about the good times.  Or, better times.  Who knows what the future may hold, how this balance stuff will turn out or progress over time.  I need to make the best of what time I have there!  Right!

I know these bars well!