I think it’s time

I realized this week – I don’t want to have a brain scan right now.  I had one in December.  I don’t want another one next month.

Also, I have pondered about a lot of things lately:

  • Why are the MRI’s so frequent? (About every 6 months)
  • Are they this frequent to help ease my anxiety?
  • Does the doctor want them this often?
  • There hasn’t been “significant” growth since 2011.  What does that mean?
  • Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
  • Why don’t I want to have this next scan?
  • Will there be (of course not) any significant change if I push the scan off 6 months?
  • Should I appeal the disability denial?
  • Should I refile?
  • Should I file bankruptcy?
  • Why can’t I catch a break?

When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep? 

Daily Prompt: None

Boy. Sometimes I can sit before my computer and just write and write and write.  Some days I am filled with angst about Cowden Syndrome and the brain tumors, and other days I can forget it all.  So weird.  Yet such a blessing.

At times I like to write about other things (my cats, books, my church) to convince myself that I am more than my medical condition.  These Daily Prompts are helpful.  When I read today’s prompt though, I couldn’t piece anything together.  Sure I would like:  NO more doctor appointments.  No more MRI’s.  Could I imagine saying one day:  No more MRI’s for me.  None!

Could I make the decision to stop scanning my brain?  Stop scanning my breasts, colon, kidneys, et al?

Doubtful.

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.

That brain scan life

Yesterday morning I had another scan.  I wish I knew how many I’ve had since diagnosis.  (I bet it’s 10X more than I think.)  You know, I think hope wish that every time I go it’ll get easier.  It doesn’t.

I have to ask the MRI technician every time the following questions:

  • What if there’s a power outage while my scan is happening?
  • What if something happens to you while it’s happening?
  • What if there’s an earthquake while I’m in there?
  • What if there’s a natural disaster?  Or an emergency at the hospital while I’m in there?

The technician is pretty funny; he knows me by name and me him.  He always talks me off a ledge, which I appreciate.  Plus, I’m usually medicated so that helps 150%, too.

I practiced my visualization:  I am at Disneyland.  I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park.  (It’s a neat little tip that works for me!)

Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”

We shall see.

Brain balance

I had a brain scan this week, and saw the neurosurgeon on Friday for the review.  I was up super late last night going through the report with a fine-toothed comb.

Just participated in a #BTSM (brain tumor social media) tweetchat.

I had a terrible dizzy episode this morning right after I woke up.

At church last week I had a horrible experience in teaching my Relief Society lesson.  The connection between my brain and my mouth was lost.  I couldn’t get the words out.  I lost it in front of the sisters.  I cried.

I also had a good dinner with a friend Friday night.

I bought some new shoes and a new workout top, too.

I have done a lot of sudoku puzzles these last couple of months.

Went to a zoo with my family.

Usually, my brain stuff keeps me up at night, but what I continue to learn each day is that I have to balance my life and my health.  I don’t do it well, and I don’t do it often.  I just get to keep practicing.

 

(Thankful)

I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.

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?

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.