It happened

That one thing.  That I fear greatly.  It happened this morning.

I took my shower, all was well.  But, after I couldn’t quite shake the feeling that something wasn’t right.  Do you know what I mean?  I kind of did a double take in the bathroom, but then shook it off.  “No.  It can’t be” and went on with my morning.

But…

As I continued to get ready that nagging feeling didn’t go away.  In fact, it got much worse.  But I couldn’t wrap my mind around what it was.  Try as I might.  Then, it hit me.  I walked down the hall and told my mom, “There is a small chance I may have forgotten to rinse the shampoo out of my hair.”

(I wish I had a camera to take a picture of her face!) – she looked at me and said, “You don’t remember if you rinsed your hair?”  Unfortunately, that is such a loaded question, and she kind of hung on “remember” like she thought I was crazy.  There’s quite a bit I don’t remember lately, and it’s affecting me (fearfully) quite deeply.  How will this affect me in working?  In other areas of my life?  And, now I can’t even freaking remember if I rinsed my hair?  What the freak is going on here?!

Some things are really important to remember, and I’m thankful to have a smart phone in those times.  Other things aren’t that big of a deal, right?  But, I think my hair is kind of a big deal.  Kinda.  :)

#AmIRite?

 

On my way

  • I’m on my way to the next P.T. appointment this morning.  Little bit of apprehension.
  • Went to another FORCE meeting this weekend.  Sigh.  I can’t believe I’m considering another surgery, but I really am.  Today I think I can handle surveillance every 6 months for the rest of my life, but tomorrow I will remember these women who have had prophylactic bilateral mastecomies and who look AMAZING.  Strong, powerful, stunning, women and wonder if I can be one of them too?
  • I’ve been on a small dose of estrogen for several months since the hysterectomy and it has helped wonders with the hot flashes and insomnia.  Well.  About a week or so ago (maybe 2, I don’t know) I started getting break through hot flashes.  (I thought that I could handle those, I’d look for some homeopathic treatment and be OK.  Because, we don’t know if me being on estrogen is going to end up biting me in the bumm at some point in the future, anyway.)  But, add in the insomnia too?  No.  Just no.  That makes me so angry!  I get really crabby when I don’t sleep.  And, call me crabby today because I didn’t sleep for beans last night.  So, the oncologist said I could increase the estrogen a small amount and see if that makes any difference.  So far?  None.  Patience, I have none.  I have no time for my body to decide if it’s going to make nice with the estrogen.  I just need it done!
  • I’m still volunteering at a local animal shelter.  Here is my lovey and I want so much to adopt her.  Her owner died and they brought her to a shelter.  She is skin and bones and was so depressed when I first met her.  At least now she is greeting me when I visit and will eat treats from my hand.  I pray she gets her furever home!

    Kayla

    Kayla

 

Goals

My biggest hope is that with this blog I can help someone feel better.  Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease.  That by sharing my story as openly as I have it will give another the strength to take their next step forward.  You see, I didn’t have that when I was diagnosed.  I hope to help it be different for someone else.

I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me.  Never, in a million years, did I think of today – 4 years ago.  I want others to know that it gets better.  Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days:  Volunteering, working on-call when I can, etc.  It’s not easy, but I try.

I have thought about PT these past few days and can’t believe I forgot to mention to him a few things:  that I have struggled with fine motor tasks (I notice them.  This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns.  And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal.  It really is.

So, I don’t know what tomorrow holds, or next week or next month.  I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT.  Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term.  Can I?  Is there too much damage?  Was my brain scrambled too much to make any progress?  Will the insurance people count minimal progress and any progress and give me all the appointments as approved?  All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.

Yup

Anything is better than nothing, right?  I know I’ll have another post soon after the next appointment because I really want to document this PT journey.  I know there will be some tears.  Frustrated tears are just par for the course now.  But, once I get the tears out hopefully they won’t come again.  :)

Physical Therapy

This morning I went to my first physical therapy appointment to discuss the issues I have faced these last several months:  balance problems, vertigo, and dizziness.  What a whirlwind hour!  Although I didn’t know what to expect, I had a rough idea of what it would be like once I got there, and I was right.  Thankfully, I wasn’t as anxious as I expected!

When I walked back to the gym I thought to myself, “What am I getting into?” – and then followed the PT back to the curtained area.  His first question was, “What brings you here?” and I went into my story:

  • 2 brain surgeries
  • 2 brain tumors
  • Trouble with my balance
  • Trouble with vertigo (although I’m thinking this could be medication-related?)
  • Trouble with dizziness (which is kind of like vertigo, duh)

The PT had read the notes about me so had a rough idea of what he would be dealing with with me.  The first thing he checked was my blood pressure.  He mentioned some thing that had several names (I think I have read blogs about it?) and said that we needed to get a lying down BP and then I needed to sit up as fast as I could and we’d take another BP.  The BP lying down was 118 over something.  I choked and told him that that was someone else’s blood pressure.  :)  Then, after a minute or two I had to sit up FAST and we took another one.  Guess what happened next?  “ER” on the machine, and it didn’t mean “Emergency Room” thankfully!  It meant a big, freaking, ERROR.  So after sitting for about 2 minutes I then had to stand up really fast and PT took another BP.  This was not my BP either!  117 over something.  Wow!  No white coat syndrome this morning, that’s for sure.  Whew!  Which I know is one of the big parts of PT’s job – to ease the anxiety of the patient.  I get that part.

Next, we went to the treadmill and I had to do the neuro tests that I just.cannot.stand!  On the treadmill (thankfully, it wasn’t moving), feet together, don’t touch the bars in front of you, eyes open…ready, set, go!  I had to stay as steady as I could.  Now, that may not seem like a big deal but believe me, it really is.  Then, I had to do those same things again with my eyes closed.  Then, with my feet tandem (left foot in front, heel to toe and then switched feet), and each time I was timed to see how long I could do each one.  My left side (movement, balance, etc.) is markedly worse than my right.  This PT was “Johnny Cheerleader”, (thankfully not annoying too much) and was right there next to me as I lost my balance, etc.  I’m surprised that I didn’t lose my noodle this morning during those exercises. I told PT before that I was going to cry when we began all this.  And, I did not!  Praise all that is good and holy!

The last thing we did, that I really, really, really, didn’t like, I think was checking for BPPV (but I can’t be too sure?)…and I had to lay on a table with one PT next to me and the other PT behind me with these huge eye glasses on (so they could see my eye movement in great detail if there was any).  Laying down quickly wasn’t a problem, except it kind of hurt my upper back.  But, when they told me I needed to sit up fast, ugh.  I didn’t like that.  Not one bit.  This type of dizziness was on a whole other level compared to the dizziness I feel when I turn over in bed.  It was almost to severe vertigo and I felt like I was going to hurl.  It was major.  I don’t remember if I asked what my eyes did but there were some small techy-techy convos between both PT’s about my eyes.  Urg.

I get 10 visits, and in these 10 visits we will see what, if anything, can be improved.  We took a whole lotta baseline data this morning.  I told PT that my biggest goal is trying to better my balance.

Here’s hoping to BIG MONEY AND NO WHAMMIES!

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?