On a walk

I’m trying to kick up my exercise again, because surgery last month put a wrench in things.

Thankfully, crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)

I felt like a normal person!  Albeit, for about 15 minutes.  But, still I’ll take it.

Because then I remembered I have my brain scan next month because gangliocytoma.  And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.

I guess this is part of what life entails, right?  Little moments of breathing in between the big stuff. 

Or in my case, the big brain stuff.

doub8m0w0aa-nvc

 

Advertisements

“So what are we doing today?”

“What brings you in today?  I know we just saw you in March.”

W E L P …

I met a very nice hospital employee this morning.  I am finding more often I am getting nice ones, which is a huge deal!  When you have to interact with a sucky medical employee it’s such a freaking drag!

As I was in the exam room, I began my story:

  • PTEN mutation
  • Breast Cancer risk
  • Similar to BRCA mutation
  • Brain tumors
  • Surgeries

And the list goes on. I kind of have my “go-to” story when I meet new medical professionals.  She was friendly, and I could tell she has been around the block (but I don’t mean that at all in a negative way).  She says to me, “I have been around over 20 years and I’ve never heard of PTEN mutation.”

GAH THIS IS SO WRONG PEOPLE!

She was nice to let me rant a few minutes about how irritated I am that “everyone” seems to know of BRCA mutation, but no one does of PTEN and it’s JUST AS SERIOUS AS BRCA!  (I would like to add here though that any medical condition that causes a woman to be at high-risk for breast cancer  is serious, whether it is a 10% lifetime chance or 88% lifetime chance.  But, anyway…)

I made it through the appointment with flying colors (haha) and then got dressed and went along my way.  As I was going to my car our entire conversation really struck me:  How thankful lucky I am to have been diagnosed as quickly as I was.  Can you imagine if I had Cowden Syndrome and yet didn’t know about it yet?  Regardless of zero family history of cancer.  What about all these women who are getting tested for BRCA mutation and yet PTEN mutation is conveniently being left off?  I really feel that Cowden Syndrome really isn’t as rare as the numbers say, and that is paralyzing for those who have it yet either aren’t diagnosed with it, or are diagnosed later than they should be, or have had multiple cancers (breast, thyroid for example) and that is not coming up on anyone’s radar?

Gosh, I could go on and on about this of course.  My hope and prayer that at least one person will be educated about PTEN mutations via either my story, or another’s who has found their voice to shout!  (NOTE:  the employee did say, “Thank you for educating me about that” which was really nice.  Those types of conversations really give me strength to keep writing, because validation.)

PS:  Please visit my link and consider supporting if you can.  Every bit helps!  ❤ Thank you.  Let’s all bring awareness for PTEN mutations.

Connect the dots

Sometimes, it’s fun to look back at from where I came.  My real medical life began in 2003 when I got diagnosed with thyroid cancer.  I hadn’t really been all that sick prior to that.  Little things here and there, had my tonsils removed when I was 19, that’s about it.

Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev.  Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!

I saw the endocrinologist this week.  With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good.  I’ve had better (see previous sentence) and I have seen much worse.

People can’t seem to leave my TSH alone.  It’s either too high; too low; too whatever and we have to worry about blah blah blah.  I just KNOW how I feel when my TSH is a certain number.  Can’t you all leave me alone?  (NOTE:  Mild sarcasm.  I get it.)

I saw Dr. Endo this week.  He loves my TSH at 1. something.  I hate it.

I love my TSH around .10 or .20.  But, he doesn’t.

Anyway, more blood work.  Checking of my T3 or T4 or something.  I don’t know.  Then, I see Dr. Oncologist in the next weeks to check The Ladies.  

.

.

.

.

.

.

.

.

 

What’s new with you?  🙂

Daily Prompt: Bitter

First off:  hahahaahahahaaaaaaaaaaaaaaaaa.  I love this prompt!

Second:  Happy Monday!

Third:  I am reading this book and CANNOT put it down!  I was up until 1 am this morning (gah!) convincing myself, “One more chapter.  One more chapter!”  Without giving away too much of a spoiler, I was going to be VERY BITTER if Orson got hurt!

So, onto the daily prompt:  Let’s expound on this for a moment…

  1. I have 2 brain tumors
  2. I had to have a hysterectomy to manage my uterine cancer risk
  3. I live at home
  4. I am not able to work
  5. I am overweight
  6. I had thyroid cancer
  7. My esophagus is lined with an innumerable amount of polyps that (may) or may not turn malignant one day.
  8. I could find many more but let’s stop there.

I am not writing those things for pity.  I am writing them out as they are my reality since July 18, 2011.  Couldn’t I be bitter?  Shouldn’t I be bitter? And to be honest, I think in the beginning of this new life of mine I was in fact very bitter.  I had big dreams!  I was going to have a career and a family and be a wife and a mother and and and and….but in fact, my life didn’t turn out that way.

Today I have my bitter days, but now they are more bitter hours.  (Progress!)

Some days  I wake up pretty bitter that I can’t go out with friends, I can’t work, I can’t be a mother, I am not an independent woman, blah blah blah.  But, I can better name these moments now, and I while I may entertain the thoughts for a short while (because my feelings are my feelings and I want to honor them) then I move on and distract myself doing something else.  Whether that’s exercising, walking, volunteering, cleaning around the house, helping my family, writing on my blog, taking photographs (which is my new LOVE!) etc.

I think it’s very natural and normal to be bitter about things in our life.  What’s important is how we deal with that emotion.  Please don’t let it eat you up inside.  We are in this together.  ❤

I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.

 

Daily Prompt: Resist

I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often.  I wish I was a writer, and could write eloquently and express the things in my heart.  I usually just mush everything and end up writing the way I speak. #fail

Anyway, I saw the prompt for today and it resonated with me.  Time to pick it up and be the Blogger I only dream about!  🙂

Resist

For years after diagnosis, I resisted everything.  I don’t have brain tumors.  I don’t have a rare hereditary cancer syndrome.  I don’t have to go to the doctor all the time.  I’m not high-risk for breast cancer.  These brain tumors will not grow.  Resist.  Resist.  Resist.  

Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance.  Resistance is futile.  Especially when you have a sketchy medical status.  I can no longer resist what is.

I have 2 brain tumors.  I have Cowden Syndrome.  Resisting the reality of that is a recipe for disaster.  My life has been a disaster and continues so.

Today, I tell you I will try harder.  I will do better.  I will stop resisting.

Today.

Crying wolf?

One of the bad things about Cowden Syndrome is that if you see something odd on your body, it’s a struggle to keep your mind from going to the bad place.

And by you – I mean me.

I have an 85% lifetime chance of getting breast cancer. I really hate those odds.

  1. In the shower just now, I found something on my breast I’ve never noticed before.
  2. I keep telling myself, “It’s just dry skin. It’s ringworm (ew). It’s nothing.”
  3. Don’t overreact.  Don’t cry wolf.  Let it go.  See how it is tomorrow.
  4. But what if it IS something? I can’t ignore odd things popping up on me. That’s the epitome of PTEN mutation. Lumps & bumps.

I hate to seem like I’m crying wolf though.  And, what if I can’t see clearly through my own eyes?

Not the best way to start my Holiday

As some of you know, I am scheduled to go before the Disability Judge next week.  This date was postponed from an earlier date this summer because I had to get new representation.

Well, I received a call from my advocate (the new one) Wednesday morning.  He asked for my permission to request another postponement.  I was driving so I couldn’t hear nor follow very well what he was saying to me, but something about him “falling on his sword” and just having received over 1000 pages of my medical records.  All this information shoved down my throat on my way to celebrate my Thanksgiving.

I felt ill.  And, still do.

He’s known about this date for months.  In fact, since this summer when I retained him to represent me.  He mentioned something else about “not having prepared the brief” as he’d wanted to.  He had been slammed with hearings this past month.

Well, right.  MINE WAS IN THAT GROUP TOO!  WHY AM I THE ONE WHO SUFFERS BECAUSE YOU DIDN’T DO “AS YOU’D HOPED TO”?

 

Is this a sign?  Is this a sign that I shouldn’t be applying for Disability?  My doctors seem to be on board, but why isn’t anyone else?  I’m not making this up!  I have 2 brain tumors, a hereditary cancer syndrome where I’m at risk to get many types of cancers, I have severe headaches several times a week, as well as having had 2 brain surgeries and am experiencing many symptoms from all that!

I guess part of me understands having just received the medical records.  And, evidently the Judge needs to go through all that, too.  So, if it was just because of that, I’d understand.  But, he could have just been schmoozing me, too.  How would I know any different?  It’s not like I trusted him with the most important thing in my life.

I’m so confused.  I’m so scared.  IF the Judge doesn’t approve the request for postponement, then what?  He has to do it anyway.  Will he be ill-prepared?  This is my life we’re talking about. It’s not like I can find another advocate at the drop of a hat?  Hopefully the Judge will approve it, but then what?  I will walk in Wednesday with an advocate who hasn’t done enough to help me?

So as of today we know nothing.  I guess I’ll find out Monday.

Oh, and I’m still broke and destitute.

Did I mention that Lhermitte-duclos Disease and Cowden Syndrome have ruined my life?

 

I’m hungry

Considering everything I’ve been through, it’s completely understandable that I’m nervous about going to the hospital tomorrow.

I have had several colonoscopies already; however, that doesn’t make this any easier to bear. I am at a greater risk of getting colon cancer because of my mutated PTEN gene. It’s not fun. It’s not easy. I’m also having an EGD. Because polyps and Cowden Syndrome are BFFs. We know I have innumerable polyps already, checking their status in about 8 hours from now.

I have had a steady diet of Cucumber Gatorade and chicken broth today. I’ve experienced uncomfortableness today, too. Tomorrow, I pray for a skilled and clear-minded Doctor who will make sure I am safe and does what he needs to do for my health. 

I’m also dreaming of something Pumpkin when I get home. 

Going to try to get some ounce of sleep; a challenge amongst the hunger pains and anxiety of hospital- anything.  

Good night.

No words. Again.

I have thought for the last few weeks about what I can write about.  What I can catch you all up on, because life has moved very quickly as of late.  Mammograms, kidney scans, dizzy episodes interrupting life, etc.

While that’s a great thing, it’s also sometimes difficult for me to manage.

But, regardless, life happens on life’s terms. I continue to learn that.

I just clicked on a blog I follow, and found out the devastating news.  I never met this person, but I was one with her.

I am so sad.  I am so sad for her family.