Daily Prompt [Genius]

In my humble opinion, it doesn’t take a genius to know that Brain Tumor Awareness is just as important Breast Cancer Awareness.

While pink is not a cure and gray isn’t either, it still needs to be on our minds, hearts, mouths and in the media.  Who will take the first step?

Will you take the first step?

PLEASE NOTE: Don’t forget to take a look at my fundraising site and consider buying a shirt to support if you can.  Thanks! ❤

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“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.

Left eye (and not the good one)

A few months before I was diagnosed with the brain tumors, my left eye was twitching constantly.  The top and bottom eyelids wouldn’t stop twitching!  It was so annoying.  I went to a few natural doctors around that time (not for the eyelid specifically) who did different types of testing, including muscle testing.  The doctor said I had an intolerance/allergy (I cannot remember the exact term he used) of American cheese, wheat, and something else that I can’t remember either (hello brain tumors and menopause.  I can’t remember crap anymore!)

It’s interesting to note that at that time (6+ years ago) I had been loving er, I mean living on triscuits and cheese.  I think that’s only incidental but hey!  You never know. hehe

I don’t remember either if the supplements he started me on did anything to help my eye.  I do remember though getting diagnosed with a 5 cm. brain tumor 5 months later (cough! cough!)

So, my point is:  I don’t think my left eye has twitched once since this whole Rare Disease stuff began.

Guess what started twitching 3 days ago?  And, coincidentally I skipped my brain scan this mid-year.  (I am ready to do the MRI’s yearly now.)

But that’s really here nor there.

*ALSO:  I have made a few more changes to my Teespring storefront:  Please take a look!

Daily Prompt [Educate]

To be honest, I hope that my blog will help to educate (to anyone who will listen) about Cowden Syndrome and Lhermitte-duclos Disease.  Have you ever heard of Rare Diseases?

I began this blog Day 1, or rather Day 2; the day after I was diagnosed with a 5 cm. brain tumor in my cerebellum.  6 years later and I still don’t have the foggiest idea what I am doing.  🙂

But, I’m trying.   Thank you for hanging on with me!

PS:  Please check out my Teespring storefront while you’re here!

Daily Prompt [Continue]

What other choice did I have?  I couldn’t lay down and give up. I had to continue forward.  But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!

It’s recovering from freaking brain surgery people!  You do what you have to do in order to not die.  You would have done the same damn “thing”.

PS:  Don’t forget to check out my Teespring storefront!

To work

A few days ago an acquaintance of mine asked me, “Now, can you really not work or do you just not want to?”

You know, when someone starts off like that with me, it’s really a lose-lose conversation.

As I said, she’s just an acquaintance.  She doesn’t know the daily ins and outs I deal with.  In fact, no one really does (she doesn’t know me well enough to ask, but had she asked, I would have told her.)  She droned on about, “People who get disability get worse” and blah blah blahhhhhh.  To be honest, I had already tuned her out.

But, do you see where I am going with this?

Think about this for a moment:

  • I don’t enjoy being destitute
  • Do you think I love worrying about bankruptcy every moment of my day?
  • Do you think it’s fun not having money to buy my basic needs (clothing, toiletries, etc.)?
  • Do you really think I am home eating bon-bons watching daytime TV?
  • Just because I can walk doesn’t mean I am not dizzy, in pain, managing a migraine, trying to concentrate and focus on what you’re saying to me, etc.
  • My life isn’t fun.  It’s damn hard

I can’t do what I once did.  I am applying for jobs.  I am looking.  But, maintaining a full-time job (as I did before diagnosis and surgeries) isn’t possible.  And, evidently, even finding part-time employment isn’t happening for me.  Also, I can’t trust or disclose in an interview, “Oh BTW, I have 2 brain tumors and damage now and get dizzy often and need frequent breaks to sit or stand and have to drink a zillion ounces of water now because since surgery I am more dehydrated than ever and sometimes I get migraines too..and…and…and…”

What the hell am I to do?

Daily Prompt [Trance; and also Depression is real]

I mean, it really does.  But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things.  I feel like when I have days like this (read: days that suck) I need to blame something:  (see my list of things above).  I don’t know why.

I guess because I hope I’m not just lazy.  I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.

Today, for example: I didn’t go to church.  I went on an “adventure” yesterday (my words) and I think I overdid it.  I just couldn’t clear the brain fog this morning.  I woke up and felt like I was in a trance.  So, I slept/napped a bit more. Did some reading.  Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices.  (Actually, I probably have many more but these are my main 2.)  I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.

More later.

Daily Prompt [Solitary]

A quick search states that solitary means: existing alone, unaccompanied, alone, friendless.

And it’s funny that I find myself alone as I am writing this post.  Alone, except for my cats.  I am a very proud Cat Mom.  ❤

At this point in my life, or rather my CS life, I am unaccompanied at my medical appointments.  But you know what?  Just because I go to them alone doesn’t mean they are any easier to manage or bear alone.

I have just read a few posts on this prompt and much of what I read talked about being an introvert or extrovert and how to manage your life as such.  I don’t know what I would call myself actually, but I guess my point is I wish I wasn’t in this medical world alone.  It gets very lonely and overwhelming sometimes.

Medical world, Rare Disease world, Brain Tumor world, all of it.  I can seem strong sometimes, because strong is the only choice I have.

I’m mad

So, this post is just to get all this crap out of my head so that hopefully I can sleep tonight.

Welp.  I don’t sleep any other night, so why would tonight be any different?

LET ME BREAK THIS DOWN:

  • I have 2 rare brain tumors
  • I have a hereditary cancer syndrome called Cowden Syndrome
  • I had 2 brain surgeries and am currently experiencing issues/effects from having my brain scrambled a few times
  • Blah blah blah – I see a zillion doctors
  • I apply for disability 3 1/2 years ago
  • I GET DENIED for disability
  • I can’t work, I can’t understand and process things as quickly as I used to, etc. etc. etc.
  • Just a few weeks ago I found out about a job that’s in my field, PART-TIME, matches my degree area, pays INCREDIBLY, literally perfect on paper so I scrambled (ha!) and applied. I am very qualified for the job
  • FOUND OUT TONIGHT THAT I didn’t even get called for a damn interview for the position
  • ALSO, DO YOU KNOW THAT I CANNOT EVEN GET AN INTERVIEW FOR TARGET?!
  • What does God want from me?
  • One needs money in order to survive in this world!
  • Filing bankruptcy has been one of my worst fears since diagnosis and I have been able to avoid it.  Until now
  • I can’t work.  But, then when I find something that would be a STRUGGLE but do-able, I don’t even get a call to interview for it
  • I am a good person!  I have a degree!
  • What the hell is wrong with me and what I am I supposed to do now?  Sell my body on a street corner to make ends meet?

Enter Title Here on 7/27/17 and also, (GRAPHIC?)

I don’t really know what to say when I see pictures like this.  It makes my stomach hurt a bit.

But it’s me and who I am.  ❤

As I have written before, July is always a heavy and rough month for me.  Just because I ponder so much about where my life was and where I am now.  You can read this post as a refresher, but basically I was diagnosed with a 5 cm. brain tumor in my cerebellum on 7/18/11 and then I had a 13 hour brain surgery 7/27/11.  Then, I had another one a week later 8/4/11.

I know that people talk a lot about scars, what they mean, they give us power or strength to see what we’ve overcome, blah blah blah.  I don’t really have anything wordy or eloquent to say about this scar because to be very honest:  it just plain sucks balls.

I think the more I look at it, the more I talk about it or try to embrace it, it’ll be less taboo to talk about.  I read this tweet a while ago that (paraphrased) said:  You talk about your kids and your marriage and your job.  I don’t have any of that and I talk about my brain tumors and my fear of when I will die and what will happen to me.  I freaking love this tweet and hope you will be mindful of that if your friend has a medical situation they must address.

(NOTE:  Many times, at least in my experience, just because someone has brain surgery doesn’t mean the doctors were able to remove the entire tumor.  Please don’t just assume “Oh, they are fine” once they have recovered from their surgeries.  I believe in some cases a neurosurgeon can remove the entire tumor, but that didn’t happen at all in my case.  Plus, I have another smaller 2 cm. tumor that is encapsulated in my cerebellum.  One of my sincerest hopes is that my life after surgeries and with brain tumors can help educate someone about them and how to better support us.)

I am glad today is almost over.  Soon, or probably it should be already, July 27 will just be another day. I am working towards that….soon.

PS, if you’re on Twitter please follow #BrainTumorThursday.  Thank you!