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!

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Stable is as stable does

I have had a rough few days.  Not sure why; not sure what triggers them.  I have to accept the bad days, along with the good.

So, I had my brain scan a few Fridays ago.  Saw the neurosurgeon the following Friday.  Stable.  Stable.  Stable.  In fact, the radiologist said “Grossly stable.” GREAT NEWS!  If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?

Although I struggle with wanting needing to know everything about the brain tumors.  Has there been minimal growth?  MRI’s aren’t 100% accurate.  So, how much are we off?  When will I be told there IS growth?  When will the “MRI’s not 100% accurate” show growth? Does that make sense?

I know I must accept the stable.  And, don’t get me wrong – I do.  But these dang brain tumors keep me up at night.  Sometimes I can’t believe I have 2 brain tumors in my cerebellum.  Why me?  What did I do to cause this?  Why do I have 2 tumors? Blah, blah, blah.  Same story, different day.

So, I got up this morning and went to the gym.  I try to combat the bad days with something good.  Something different.  Something outside my comfort zone.  Putting stability into my life where I can.

Do you need a fresher-upper?

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. ”

NOTE: There may be some information in this post that you may find uncomfortable. Please be warned! 🙂

Have you heard of Fresh Assist? It is a nifty product that states: “Get Clean in Between!” What a novel idea! Getting clean(er) can only be a good thing in my book. #AmIRite?

The Fresh Assist Spray came at a very good time in my life. While I haven’t (yet) been diagnosed with IBD or something similar, I have struggled for many years with chronic constipation with episodes of diarrhea. I always attributed my GI issues with being overweight, and throughout the years I seemed to manage the episodes relatively well with over the counter items and adding a fiber supplement to my diet. With all that being said, the times I experience(d) my GI issues I did have a lot of struggle getting “clean”.

Now I find myself in another situation with struggling to get “clean”. My fine-motor skills are decreasing quickly. (My fine-motor skills are decreasing due to the two brain tumors in my cerebellum. Your cerebellum is your balance center and you can read more about it and how it functions here. Your cerebellum is also called the “small brain”. I have had 2 brain surgeries and the tumors are still there.) I have difficulty grasping things (pencils, keys, etc.) and often drop things.  Now I have found toilet paper is difficult for me to grasp. Such a bummer! Can you imagine what a pain that is? So, this spray has come in handy. The directions are pretty self-explanatory: “Apply 2-3 sprays to TP, Wipe, Flush.” It made the toilet paper wet a bit, but nothing too drastic.  Plus it’s safe on plumbing.  Another win!

I received the “Cooling Chamomile” scent, but as far as I can tell, there isn’t any scent with this one. (At least to me I didn’t smell anything.) There’s also a lavender scent, but I think I have a lavender allergy so this was a lucky thing for me to not receive that one. If you’re sensitive to smells like I am (read: migraineur) this Chamomile option would probably be best for you. I love the fact that Fresh Assist is free from: gluten, nuts, and parabens. I am very mindful of limiting parabens in my life as much as possible, and now especially since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.

However, with all this being said, I am just not sure this did as much for me as I’d like or expected it to. It is in fact “cooling”, which can be such a blessing when you’re wiping constantly. But, that’s about all I noticed. I still have to wipe several times, but thankfully my private area is receiving comfort. I never got into using baby wipes because in fact, I never felt clean.  Plus I worried about the wipes clogging the toilet.  This spray does help me in feeling “cleaner”, but that’s it.

I would recommend this spray if you have any lower GI issues and need relief from constant wiping with toilet paper. If you’re hoping for another result, I don’t think this product is for you.

Real Talk

I struggle to stay present.  To be in the moment and really fully experience each moment of my day.  To not worry (so much) of my financial struggles and really enjoy my life.

This weekend I went on a quick day trip with a friend from church.  It was so much fun!  Right until I got dizzy.  About 1/2 way into our drive the bottom dropped out and everything for me came unhinged.  I was nauseous, the car was spinning, just crap.  Crap crap crap crap crap crap crap.

My day started out wonderfully, then this happened.

Real talk time. 

Heather:  This will continue to happen.  More dizzy episodes.  More balance problems.  It’s expected after having your cerebellum dug into TWICE.  Relish the good days, and be good to yourself on the bad.  Be strong when other people doubt you.  You will continue to meet the haters.

Leave them in your dust.

“What’s your cerebellum?”

I have met quite a few interesting people since my diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  And, to be honest, many of these “interesting” folks have been medical professionals.

I had blood drawn this week, and sometimes I mention to the staff my medical history (but only if it comes up in conversation).  The technician who drew my blood was new and I’d never seen her before.  We began to talk about my veins, whether I was hydrated (I was fasting), things like that.  I should have known things were going downhill fast when she began to push down hard on my arm.  I had to hold my tongue to not tell her a thing or two!

I know enough to tell them they need to use a butterfly needle, as I have deep veins and lots of scar tissue from the surgeries.  She didn’t like the fact that I told her that.  Then, as this continued I mentioned the brain tumors in my cerebellum and Lhermitte-duclos Disease she said, “What’s your cerebellum?”

I about lost my noodle.

I didn’t mention this to a restaurant worker, or a teacher, or a bus driver.  This conversation was with a person who works in the medical field.  Basic anatomy 101.  Kinda unnerving, to say the least.  Especially when I got home and saw my arm.

 

 

A bit more P.T.

Just came home from another P.T. visit. I am really lucky I got a few more visits approved.  This Therapist is outstanding, and I know I have mentioned that in earlier posts.  He is incredible at his job, and knows how to challenge my limits and get me right on the verge of tears.  Good tears, I guess, but I wonder is there really such a thing?  🙂

I have mentioned this before also, these brain tumors have robbed me of my confidence.  Confidence in my abilities to do what I once did.  Walking, especially, because of the damage to my cerebellum.  So, P.T. knows to go right to the heart of the matter and PUSH. ME.  I mentioned this morning that one of my concerns, fears, problems, complaints now with my balance is that I don’t feel sure-footed when I walk.  I feel like I am going to fall, especially when I am carrying something, or when I cannot see my feet.  It’s just reality now.  I cope, sure.  And, there is a lot of adapting.  But, I am in physical therapy to get stronger and learn some other skills, right?  So, guess what he made me do?

He put these foam rubber things in a straight line, gave me a box to carry, and had me walk across it.  Without looking down to see where my feet were.  I swear, folks.  It was one of the hardest things I have done in a long, long, time.  It sounds cheesy, sure.  But, try to imagine it.  I choked back quite a few tears.  I cannot put into words how difficult it was to walk across that, or how it made me feel when it was over.  Almost every single fear I have he magnified in this exercise, but for a greater purpose and I get that.  I get that it was pushing me through the fear.  Lots of fear.  I know I wasn’t 10 feet off the ground (and that I was always safe), but the fear of falling was still great.  I walked back and forth a few times, then thankfully we moved onto another exercise.  My mind was mush after that!  Couldn’t I have just done some sudoku instead?  LOL

When I got to the treadmill, he had another tricky thing in store for me!  I walked a mile on the treadmill, without holding onto the sides (so effing hard!) and he placed a sheet over the top of the machine so I couldn’t see my feet.  It almost made me sick to my stomach that I couldn’t see my feet.  I never realized how much I need to see my feet to get my bearings.  When he took that visual cue away, it was painful.  I was literally sweating everywhere.  Kind of gross, actually.  I am mentally exhausted and I want to take a nap.  I probably need to push through this but I think I am going to listen to my body this time.  Sleep, I am coming for you in a bit!

My brokenness

Mas Neuro

I brought my mom to my neurology appointment this morning.  Moral support I guess.  But mainly I wanted another set of ears in the room with me, because, let’s face it.  Brain stuff is hard for me.

I like this doctor a lot.  I met him during the 3rd hospital stay when they were trying to figure out what was causing my horrific headache after the 2nd surgery (hello?!  Is this thing ON?!)  Anyway, when he called me last month he told me I had an “abnormal EEG”, but this morning he seemed to tell me different information.  So, short-term I guess that’s GOOD, but here’s what I gathered from the EEG results:

Just because I didn’t have a seizure during the 30 minutes I was being tested, doesn’t mean I won’t possibly have one sometime in the future.

He said I have “brain irritation”, and yep.  He’s right.  I’m irritated so I’m sure my brain must be, too, haha.  I had to come clean that I wasn’t taking the anti-seizure medication consistently as he asked me to last month; and since we don’t really know what’s going on with my cerebellum, he increased the Topamax even more.  The thing that bugs me is that I haven’t ever known life post-surgery without Topamax or Gabapentin, and eventually (hopefully!) I would love to see how my brain does not on those medicines.  But, as time goes on, I’m thinking that’s off the table.  😦

You know how they say, “Accept the past”, or “Let the past go”, blah blah….well, no one actually says HOW TO DO THAT.  I’m just expected to know how to do this brain tumor stuff and let’s face it, I don’t do it well.  My lack of balance and (I’m now noticing) motor control AND ringing in my ears is starting to really take a toll on me.  Yes. I can walk and talk.  I am so thankful for that.  Very thankful.  But it’s still really hard.  I’m on this road alone and it’s very overwhelming most days.

More Change

When I was diagnosed with brain tumors and knew I was going to have to have brain surgery, my biggest fear was that I would wake up from the surgery different.

For the past 3 years I haven’t really felt much change.  And, thankfully, when I woke up from the surgeries, I wasn’t different.

But lately, something is changing.  And I don’t like it.  It’s scaring the hell out of me.  My balance is getting much worse.  The vertigo episodes are happening more often.  I feel like something is under my feet and I’m going to trip and fall.  These things are happening more and more.

And, there’s no going back to what once was.  Meaning, there is no pill I can take that will make this better.  No procedure that will make the vertigo episodes stop (or at least if there is one, I’m not willing to do it right now).  There is no magic elixir to help all these symptoms go away.  (I’m even frustrated with Yoga because it’s not helping with my balance and I was hoping-beyond-hoping that it would.)  This is what happens when you have 2 brain tumors in your cerebellum.

Did I think I was invincible?  Of course not.

Did I think I had escaped any effects from the brain tumors/surgery?  Kind of.

It’s getting real.  And I’m scared.

But let me say something here:  If you know anyone who has a chronic condition, whether it be cancer or brain tumors or anything else, while you may mean well trying to be a cheerleader, it’s not as simple as “changing your thinking.”  Because BELIEVE ME – if it were, I would have done it 3 years ago.

Please don’t tell me to “change my perspective” if I tell you something about the brain tumors.  Because that tells me you’re not a safe person for me to share my life journey with and you think you can “fix” me or Lhermitte-duclos Disease.  And, while I appreciate you trying to cheer me up, this can’t be fixed.

Sometimes, I just need a friend.  Someone to listen.  Someone to give me a hug and say, “I’m sorry, Heather.  I’m here if you need anything.”  That’s it.  Nothing more.  No pep talk, UNLESS I ASK YOU FOR ONE. 

Thanks.

 

Blogging refresher

I have been a slacker lately.  That’s not for lack of needing to write, or for lack of blog topics, for sure.  I don’t actually know why I have struggled getting to my computer.  I do know that I am feeling very overwhelmed lately, more than I remember in quite a while.  Had a brain scan last month, an EKG, and just last week a GI and endocrinology appointment.

Here’s what I need to write about today:

At the appointments last week I was told that I have a vermis (about the brain scan).  My first thought is, “What the hell is a vermis?”  This appointment wasn’t with my neurologist so this doctor was very clear to me that I needed to speak with the neuro.  (Obvi).  Anyway, I did a bit of research on what a vermis is, but couldn’t make sense of it so let it go.  I thought, “Maybe that’s why I am having vertigo and balance problems?  Is vermis scar tissue?  If so, that’d make sense, I think.”  It was just a mess, as always, in my head (no pun intended.  HA)

To be honest, this brain stuff usually trumps EVERY OTHER MEDICAL ISSUE of the day, but I was able to put it aside to focus on other things, and in another post I will write about the Global Genes Rare Patient Advocacy Summit that I attended.

But today I spoke with Dr. D (neurologist) and he said everything “looked fine” and blah blah blah “follow up”, etc.  I do see him and the neurosurgeon in a few months, and we chatted a bit about my balance and gait problems.  Now, these are problems TO ME.  I don’t know if anyone else gives a rip about them, but to ME IT IS A PROBLEM.  And the kicker?  There may not be a DANG THING that anyone can do to help me with it.  It may just be LIFE.  Again.  More life.  More change.  More adjustment.  More coping of NEW stuff that I CANNOT CONTROL OR CHANGE.  All these things happening to me that I can’t help or fix!  And, when I asked him about the vermis he explained that it’s normal anatomy of the cerebellum. It appears that the 2nd brain tumor is on/in/at/located there.

Oh crap.

I forget sometimes that I have another brain tumor, besides the (partial) one that’s still remaining.

2 brain tumors and I can’t get approved for Disability.

I can’t find a job.

I can’t do what I once did.

I have no money.

Now, before you interject here, I know I need to turn this around (I caught it right away, as soon as I started typing “I can’t” and I must write a post with the things I “can do”.)

But not today.  Not now.  Not tomorrow.  Just a word: