From Australia

You may or may not have heard of Belle Gibson and her terrible scam she played on people stating she had brain cancer, blah blah blah.  The point of this post is not to go on about that, but believe me, I could…it’s to share Ashton’s post (her mother is another virtual contact mine who also has Cowden Syndrome).  I hope you will take a moment to read it.

Because words

You know how words have power, right?  Words such as, “You didn’t win the contest”, or “You’re going to be a father!” can turn a world upside down.  Just as “You’re doing great!  You’re fantastic!” can send someone over the moon.  Words are so powerful and hold so much meaning.  Tone of voice, the written word, all of it.  So powerful.  I am humbled by it all, really.

Since diagnosis I have had a lot of words in my head, and continue to write on this blog to honor my truth and voice.  I have no other outlet, really, so this blog it is.  I’m not complaining, just stating a fact.  But yesterday, something happened and this blog didn’t carry me as far as I would have hoped.

I had a brain MRI the end of March and just received the Final Report the day before yesterday.  I scanned it as best I could, saw the words, “stable” several times, so felt as good as can be expected.  Stable is amazing.  Eventually, these brain tumors are going to grow and I have to be ready for that day.  I don’t know if I am really ready (probably not), and I fear that I will come unhinged when I am told there is growth.  Anyway, I digress…

I find interesting that I didn’t even catch these words when I read them; Mom read them out loud and I was turned into a pretzel because of them. Words, people.  Remember how I mentioned in the beginning that words are powerful?

Stable postsurgical changes are noted in the left cerebellar hemisphere with volume loss.

Volume loss.  I’ve never read or heard words like that about my brain.  All day I could tell my anxiety was rising.  Volume loss.  Part of my brain is gone.  Granted, it’s the diseased part, but still.  I came unhinged.  Left work early.  Caused such a hitch in my day.  I couldn’t stop thinking about the space in my brain.  All because of those 2 stupid words:  Volume loss.

Volume is the quantity of three-dimensional space enclosed by some closed boundary

Loss failure to keep or to continue to have something

Even now as I write this, and really do my best to process my feelings, I’m stuck.  Stuck stuck stuck.  Do you want me to just “Let it Go”?  Oh, sure.  Well, if it was that easy I would have done it yearssssssss ago.  :)  I’m not going to will-away these feelings.  You know why?  Because it sucks.  And, I’m going to say it sucks rocks.  Yes, I know the power of positive thinking, and yes I just began to meditate again with a positive mantra, but this is exhausting.  Being positive all the time is exhausting.  Part of my brain is gone, and I’m sad.  I’m mad.  I’m scared.  I’m alone.  I’m worried.  I’m panicked about not having money.  I’m terrified for my future.  I’m worried how my balance is progressing so badly.  All these things I worry about on a moment to moment basis and I’m constantly putting on a face trying to be positive?  It sucks and I’m tired.  I want my brain back.  I know that I have to let go of what was, and focus on what is.  But you know what?  What is kinda sucks right now.  Can you blame me for wanting things to go back as they once were?

I get life doesn’t work that way.  Life is about progressing (hopefully) and moving forward.  I know all of this.  It’s just that every once in a while something happens, or I hear something, that sends me over the edge.  Doesn’t help that I have been so depressed lately.  I still wish I knew what that was all about.  I’m exercising 2-4 times a week, working on mindfulness when I’m eating, still in therapy, and really focusing more on this blog where I write all this junk out.  Because, that’s what most of this stuff is.  It’s just junk.  It’s not doing me any good to hold on to all this fear and crap.  But, I can’t help how I feel.  And, imagine if I make the decision for the prophylactic bilateral mastectomy, then what?  I have had 2 brain surgeries, a hysterectomy, 2 thyroidectomies, what else of my body do I have to give to Cowden Syndrome and Lhermitte-duclos Disease before I can have peace of mind?

 

 

Because Cowden Syndrome means surgeries, apparently

Is there ever going to be a time in my life where surgery isn’t up for discussion?

I really don’t know what to do.  I have had most of the “main” surgeries associated with Cowden Syndrome (thyroidectomy and hysterectomy).  But, there’s another one:  double mastectomy.

If you were high-risk for breast cancer and were told there’s no “if” but “when” you will get it…what would you do?
What could you do?  The data “says” that I have an 85% lifetime risk to get breast cancer.

Yep; you read that right.

It’s on the table again.  It’s on my mind again; however, was it ever off my mind?

Not really.

I think I have (had?) convinced myself that every 6 months for the next 10 years (ish) of my life I would (could?) worry about my Dairy Queens?  Breathe a labored sigh of relief after every “normal” mammogram, but still hearing “dilated ducts” and wondering what the eff that means?  Alternating between a mammogram and another sort of test (ultrasound, MRI), and don’t forget the clinical breast exam kickers.

I can’t.

I can’t do this.

But, I can’t keep doing this either.

How do I make this monumental life decision alone?  How do I prepare for any and all mental ramifications if/when I decide to do this “next” surgery?

Because I don’t get it

  • I am in a dire financial situation.  That’s nothing new.  Haven’t worked steadily since diagnosis, brain is getting wonky, balance getting worse, etc.  (I know you can connect the dots from here.)
  • I try to work as often as I can, and that says a lot.  Because between medical appointments it’s rare that I can find a day off and a substitute teaching job on the same day that I will do. (In another post I will write about the woes of subbing for high schoolers and how I must be discerning on the jobs I accept.)  It’s not a day in the park subbing for high schoolers, but I really do love it.  Most days.  :)
  • Found out that it “may” look bad to the disability judge that I’m working a small amount.  Um, I’m desperate for money.  One needs money to survive.  Thankfully, I can still kinda work, so why would subbing a few days a month be a big deal?
  • Does this mean I should stop working the next 8 months because I don’t want the judge to think, “She subs 1 day a week, why can’t she sub 5?”  I’m only pushing through the bad brain days because I have to!  Why is this so difficult?  I don’t think that working a small amount should be held against me.  Because, who knows how long I’ll be able to sub, anyways?

I’m working on owning it

I’m doing the best I can to own my truth.  My life with 2 brain tumors and post-brain surgery is a drag sometimes.  While a few days ago I felt a smile return, it’s nothing like how I was feeling a few months ago.  I want to feel how I did then!  On Medication?  Check.  Therapy?  Check.  Exercise?  Check.  I’m still doing all those things now.  So, what the eff is wrong?  Why this depression still?

I have no idea.  I can’t piece anything together, really.  Except that I am noticing more and more issues delays problems (?) with my walk (gait) and balance.  I cannot stand still with my eyes closed (I mean, who does that on a normal day, anyway?) and I need more and more support when I’m working out.  I can’t tell you how frustrated this makes me!  I see everyone else doing the exercises and here I am using the wall for support.  Or, not using the free weights because I might lose my balance and fall.  Things like that.  Things like this make me feel different, and I have felt different my entire life.  I always felt like something was wrong with me, and most doctors I saw told me, “Just lose weight.  You’ll be fine.” (Never mind I had a huge goiter in my neck, and come to find out a huge brain tumor too!)  But, was it my intuition telling me that I was different?  Or that something was wrong with me?  Something not quite right?  I don’t know, but it took brain surgery to finally get me validated.  And now, when my brain feels “odd”, or “not quite right”, I am concerned that people are judging me.  I am concerned that people think I am faking, or “She had surgery and she’s fine.  So, what’s all this now?”

I can’t explain why I seem to have good brain days then bad ones.  Today, a bad one.  My brain feels like it’s getting mashed like potatoes or something, and then I know I’m not quite right when this happens.  I have a headache on crack.  Weather changes exacerbate it, I’m sure.  As does life, stress, or chocolate (HA).  But isn’t chocolate supposed to help stress?

I can’t deny that this cloud of depression is still hanging over me.  It’s never been this palpable where I can about taste it.  Nothing else has changed in my life to make this so much worse for me!    I am still in the process of scheduling an appointment at a large hospital for another test on my brain.  I am still volunteering.  I am still subbing when I can.  I am still managing my schedule with all my appointments.  I am still in dire financial trouble.  I am still involved in a 12-step program.

Am I over-analyzing things too much?  Probably.  Am I going to be searching ’til the end of time about why things change so much on a dime?  Probably.  Should I accept what I don’t like?  Of course.  I just don’t know how to do that.  My brain is a jumble of things on a moment-to-moment basis that if one thing falls through, I feel as though I am doomed.  Would I be feeling this same way if I didn’t have Lhermitte-duclos Disease?  I’ve always wondered that.  I’ve always wondered if this is just “Regular Heather” or “Brain-tumored Heather” and it just is.  I know that I am better on acceptance but no where close to where I need to be.  Because when something like this happens (the severe depression) it scares me so deeply because it has exacerbated my scars.

Does this make sense?  Why am I using so many question marks?  Because I am really trying to use this post as a therapy outlet, specifically for the depression.  I want to feel better.  I guess I just have to own today and accept that this is where I am today.  And, hope that tomorrow I’ll be in a better place.

My next crowdfunding item!

Take a look at these shirts I created.  I am so excited to share them with you!  Please consider buying one as a portion of the money per shirt will go to my medical bills (the link will take you to the ordering site).

The gray ribbon supports brain tumor awareness too!

The gray ribbon supports brain tumor awareness too!

Thank you so much!

Blocked

Normally I don’t have any problems writing. If anything I have so much to write about that I can’t keep things straight. Yet currently I’m blocked. Severely. The root issue is I’ve been in a deep depression that is scaring me. Unlike one I’ve ever remembered. What’s causing it? I wish I knew. 

I’m here. I’m breathing. I’m trying. I’m communicating with my mom so she’s aware. My doctors know. I’m being honest. Life with Lhermitte-duclos Disease and Cowden Syndrome is a big, freaking drag sometimes. Not the most positive post I’ve written, but sometimes owning your truth is more important than putting on a positive front. 

Dear Cowden Syndrome

I would like to share this post with you from my virtual contact: Beating Cowdens.

I couldn’t have said it any better myself!

THE week

Some  weeks are Cowden Syndrome and Lhermitte-duclos-free.  Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal.  I think it is a tad easier to accept these things that I do not like.  Maybe I’m getting tired?  Or stronger?  Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on?  (Volunteering at the animal shelter?)

I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least.  Suffice to say I didn’t get the scan as I needed to.  So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”.  (Quotes added but inferred by both she and I.)  Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound.  Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun.  But, we’ll see.  We will see.  Whatever it is it is.  I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things.  I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely.  THAT, I get.  And, I’m thankful for.  Doesn’t make it any easier, it just is what it is.  Does this sound like growth?  HA!

Friday I have a brain scan and then the appointment with the oncologist.  I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing.  But I have noticed something that is concerning, but nothing I can do about this either:  I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big.  Getting the information out of my brain in one direction is OK.  But what HAS been a problem as of late is when I have to do that in several steps.  Meaning:  When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard.  Frustrating, difficult, confusing, not easy.  And, plain ‘ole not fun.  I noticed this last month when I was at church.  I powered through, because there is no other option, but man it was harder than I wanted it to be!

Isn’t that how most of feel at times about life?  That it is harder than we want it to be?  Sure, I don’t want brain tumors and high breast cancer risks.  I would rather be carrying my Fossil bag at Disney World enjoying the park! :)  But, I’m not.  I’m navigating slowly this rare disease life.  It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have.  I wouldn’t have this blog, either.  I realized that’s kind of a big deal, too.

Not Lhermitte-duclos Disease and Cowden Syndrome (kinda)

I have racked my brain for the last few weeks about something to write about that’s non-medical.  But, let’s face it.  Pretty much my whole life revolves around medical everything or how medical somethings have fundamentally changed my life for the much, much, worse.  But, since I am a list maker, list writer, list-follower (?) I thought it’d be a good object lesson for me to write some things going on that aren’t really brain tumor related.  So, here goes:

  • Saw a nutritionist last week.  She said no more protein shakes after my workouts, and instead to drink 2% chocolate milk.  I’m all for trying something new!
  • This is my birthday week!  Celebrated by getting a fancy manicure and DID. NOT. BUY. the Fossil bag I have drooled over for months (in Mushroom, BTW).  That, there, is growth!
  • Last night I spoke at a treatment center in a Twelfth Step panel.  Quite the experience!  :)
  • Just before I began this post, I was at the animal shelter in the Cat Rooms.  I noticed that one cat in particular, Rita, didn’t look right.  Her hair seemed wet, and I guess she could have gotten in fight with another one and they could have fallen into a water dish.  But, what’s more likely is that she is ill because I heard that there is a something going around there.  I told the front office staff and I pray they look into it.
  • Been doing quite a bit of genealogy work on my mom’s family line.  I hope to never hear, “Oh, all my work has been done!” because it’s never done!  I love it so much.  I know these ancestors of mine are real people and they just wanted to be found and validated as once living souls on this earth.
  • I am thinking about doing another Booster fundraiser t-shirt.  (Especially since I shrunk mine in the dryer this morning.  #FacePalm.)  Would you be interesting in buying one?  More info. on this soon.
  • My new favorite reality TV shows:  Number 1 and Number 2.  Color me hooked; only for a few reasons.  #1 – because the single, girl in me hopes for love one day, no matter what the way. And #2 – because Days of Our Lives.
  • I have a trip planned in July and I am SO. EXCITED.  Here’s a clue: