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.

 

February 1, 2017 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.

Beyond BRCA

Have you heard of the BRCA gene?  Have you heard of the medical decisions Angelina Jolie made a few years ago?  If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer.  However, there isn’t much about PTEN mutations, and I want to change that.  Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious.  I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.

I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.

No words

I’ve never known anyone with a brain tumor before.  Since diagnosis a new world has opened up for me.

There aren’t any words.  Brain tumors and cancer scare the shit out of me.

One of my virtual friends fought a battle I cannot ever understandShe’s at rest tonight.

I have a hole in my heart. 

I will miss you Candice.  Thank you for your friendship and support.

Sickness, be gone

I want to write something funny and witty.

I want to write about how good I feel; how positive I am; how much I have thrived lately; all in all having a grand time with life.

But, it’s not happening.

I am so sick.

Going on 4 weeks of coughing my brains out.  Up every night at 2 AM and it does. not. stop.  My ribs hurt.  My body hurts.  My back aches.

The inhaler and the mondo cough syrup doesn’t touch it.

I could muster everything else but for this cough.

It’s breaking me down.

You know, how when you feel crappy and your immune system is taking a beating part of you just wants to lay in bed all day and watch your stories?  I have done a bit of that.  Trying to rest and recover.  Waiting and praying for the recover part to eventually kick in.

But, I’m being brutally honest here:  I haven’t forgotten that I have a hereditary cancer syndrome.  It’s taking every ounce of strength I have to NOT look online for, “What are the symptoms of lung cancer”.  Call me crazy?  Sure.  Call me a worrier?  Yes, I’ll admit that to a point.  Look at my history and you’ll see why.  But, I am writing to hold myself accountable that I AM NOT GOING TO LOOK ONLINE FOR THOSE websites.  I have not.  I will not.  It doesn’t matter that “that type of cancer isn’t on the books” (like not needing an EGD before, but I digress), I’m a human being with feelings and fears.  My body has let me down in the past and I struggle to keep it healthy presently.

There is no evidence supporting I have lung cancer, and I don’t even know if it starts with a cough.  There is evidence supporting tons of other things, but not that.  I’m writing all this mumbo jumbo to try and stay calm and focused on healing.  Period.

Guest Post – Meet Heather

I am really thankful that a few more people have reached out and shared their Rare Disease story with me.  I am so blessed to have this blog and to be able to share my story with others!  Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you.  Besides our name, she and I have a lot of other things in common too!  Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD.  If you would like to contact her on you can do so here.  Please meet Heather!

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I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School.  I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!

Two years ago I was diagnosed with breast cancer. I found out after the fact that I was at an increased risk for breast cancer due to the Cowden’s. I was asked if I wanted to undergo genetic testing during this time. I was told that I met all the signs and symptoms for Cowden’s Syndrome but they could tell me officially if I had it. At first I did not see the point in paying a lot of money to find out that I officially have Cowden’s. I ended up getting tested because my sister had just gotten married and wanted to know if she had it. It was easier for them if I got tested first to see where the mutation was. So last year I officially was diagnosed with Cowden’s Syndrome. I had to have a hysterectomy 4 months ago because of complications from the breast cancer and having Cowden’s.  Currently, I am dealing with cognitive side effects from having two concussions two months apart. The doctors tell me that my case is different from most people because I have had two brain surgeries too.
Having CS and LDD is not fun as all of you know but I am doing the best that I can. I try to take one day at a time and do the best that I can with what I have.  My mantra is “In life, you can only play the cards you were dealt.” I get tired of always having something wrong with me so I tend to push through things so I can continue to do the things I enjoy. I may have a rare genetic mutation and a complicated medical history  but it is not going to define who I am.