Just like riding a bicycle

These last few months I have had a nice break from medical appointments.  It’s been really nice, I must admit.

But as they say, when it rains it pours.

Not even counting oral surgery or losing my hubcap last month, I got slammed this week.  I got sick and I don’t mean a bit sick, I mean siiiiiiiiiiiiiiiiiick.  All week I needed to get my blood drawn for my endocrinologist appointment tomorrow morning; I was only able to crawl out of bed this morning to get that done today.  Also tomorrow morning, I have my oncology appointment.  After my blood draw appointment I had a thyroid ultrasound.  There was so much wailing and gnashing of teeth.  I could not stop coughing.  At all.  At one point during the exam the technician asked me, “How long have you been coughing like this?”  (Some of the medical people on my “team” don’t like me coughing too much since I the craniotomies.)

Thankfully, I powered through.  The doctor won’t have the report by tomorrow, but at least he can read the results online.  I best be ready because I feel a firestorm coming!

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Happy Freaking 2016

For the record, oral surgery is much better than brain surgery.

However, if I had had any vote in either matter I would have vetoed both!

(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.

Sigh

4 years ago today I had to have a 2nd craniotomy to fix the CSF leak coming out of my incision in the back of my head.  I still can’t believe I had one brain surgery let alone two.  In about a week’s time.

It’s unbelievable to me how much my life has changed since then.  And not in a good way.  Struggle and pain within my body (since surgeries); financial loss and hardship; fear of the unknown of what the future holds for me…just to name a few things.  The dark cloud is depressive today.

I hate it.

My week

All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome and Lhermitte-duclos Disease?

Monday:  I had an appointment for a PET scan and a PEM scan.  I wasn’t clear exactly what was going on when I got there because I thought I was just having a PEM scan, which I affectionately call a “glorified mammogram”.  I arrived at 8:30 and was shown to a room that had a recliner in it.  I thought, “Hmmm.  This is already unlike any other medical thing I’ve ever had!” and the technician gave me the instructions.  First, she had to check my sugar (thankfully I had great veins that morning!) and it was 102.  I asked her if that was high, and she said anxiety can make it go high but it wasn’t too bad.  Whew.  Next, she brought in the radioactive sugar and said that it was time.  Dun, dun, dunnnnnn.  I didn’t even have a clue what that meant!  Would I feel anything?  Would it hurt?  She put it in the IV and then said I couldn’t move, to rest on the recliner.  No talking!  No playing on my phone, no reading, no nothing.  Just relax.  BUT GUESS WHAT HAPPENED?  I totally had to go to the freaking bathroom.  I could not relax for 30 minutes at all because I was worried.  Plain worried.  The technician got a bit snotty when I told her I needed to go (her response was, ‘Well, I’ll give you permission if you must, but we can’t wait because the sugar is already decaying’…Whut the freak?)  Anyway, I somehow made it through the 30 minutes and when she came back into the room and said, “You can move now” it took all my restraint to not r u n to the bathroom.  #RealTalk.

After all this, I had to wait another 30 minutes to percolate, I guess.  🙂  Was finally taken into the PET CT, which wasn’t a big thing because thanks to Chuck (what I used to call the brain tumor), I’ve had plenty of them.  Since I was still radioactive right after this procedure was the PEM scan, but can you believe the test was done at the end of a hallway?  There were people (read: a MAN!) walking into another room so he could totally see me taking my Dairy Queens out!  There was this accordion barrier thing to “shield” me but it was still totally a wonky set up.  I had to endure 16 minutes of this on each “side”.  Weird.  Are you with me?  (As it stands right now, I haven’t heard from the surgeon.  No news is good news, right?)

When I got home I had to stay away from my nephews for 4+ hours, then as I was detoxing I got 2 huge migraines.  Just crazy talk, you know?

Wednesday:  My neurologist has been on medical leave.  Not a big deal to me, because for the most part I’ve been stable.  Ha.  But I have weaned off the gabapentin and lowered the topamax because I really wanted to know what life is like not on those meds.  I knew the gabapentin was for pain and the topamax was for migraines.  And, I hadn’t really been having either (for the most part) and since Dr. D was on leave, I just was going to take care of my biz like the champ that I am!

I called the office on Tuesday and left a message so it could be documented that I had discontinued the medication.  Yesterday morning I get a call asking if I can come in at 2 PM to see the neurologist they have filling in?  Um, sure.  I guess.  When I met this doctor, come to find out she knew the doctor who performed my craniotomies!  That was kind of a nice thing.  But, she told me some things that were a tad disconcerting:  I did have an abnormal EEG after all (I could never get a straight answer from Dr. D about this), and I must take the Topamax twice a day because I am at risk for seizures because of the scar tissue in my brain.  Once a day (I had taken it just at night) is not enough.

Today:  I have PT in a few hours.  I’m nervous.  I wonder if it’s going to be awkward like it was a few weeks ago.  Let’s hope not.  I hope we can continue to have a good working relationship.

OK dear readers, this was my week.  How was yours?

Rare Disease Day 2015

If you would have told me July 28, 2011 (the day after the first craniotomy) that on this day I would be working out with over 40 people and coordinated a week-long Rare Disease Day event – I would have told you to stuff it.  There’s no way I ever could have imagined today…even on my best day after brain surgery!  This was my first event but I tell ya – I’m hooked!  Look out 2016, hopeforheather is coming for ya!

Together, with the help of the exercise studio I work out at and the support and generosity of friends, neighbors, and family we raised $434 for Rare Disease Awareness! The money will be donated to  Global Genes Project and PTEN Foundation.

There’s so much running around in my mind that I don’t know where to begin to write.  A humble thank you will have to suffice for now.

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.

 

You know it’s a bad thing when…

the anesthesiologist gets called to do your sedation for the colonoscopy.

I SWORE that this time would be different.  I SWORE that I was going to get the hospital calm, relaxed, and meditative.  WHY WASN’T TODAY different?!  Every procedure/surgery I have had has been laced with drama, tears, incompetent staff, rude doctors, etc.  TODAY WAS SUPPOSED TO BE DIFFERENT!

Two years ago I had an EGD and colonoscopy.  Since I just been diagnosed with Cowden Syndrome the year before, I needed some baseline tests.  I hoped that today would be like last time.  Meaning, since I had 3 polyps last year and some were found via the EGD, and in after talking to both my oncologist and primary doctor, I was under the impression that I would have BOTH procedures this morning.  BOTH.

Now, this post talks a bit about what happened a few weeks ago.  Why did I assume that all would be OK today?  Was I supposed to call the GI Clinic to confirm the EGD when Dr. L and Dr. B both doctors confirmed for me?  No.  I shouldn’t have to do that.  I shouldn’t have to micro-manage all these people in all these clinics to do their freaking job.  It’s hard enough for me to manage what little control I have over my own  life.  It should be crystal clear why I have control issues!  This is MY LIFE.  MY BODY.  I expect these people to do their job.  Period.  And, when it comes at the expense of me, or my wasted time, I DO NOT CARE FOR THIS ONE BIT.

Mom and I get to the clinic:

NURSE 1:  “What are you having done today?”

ME:  “EGD and Colonoscopy.”

NURSE 1:  Looks at paperwork, “Ummmmm…..”

Cue ALL THE WORLD COMING TO A HALT HERE!

I lost it.  I literally and absolutely came unglued.  All over their place.  (My Blood Pressure was 145/110).  I can’t begin to express how angry I was!  Why wasn’t the EGD scheduled?  “Because they didn’t authorize it.”

WHO THE EFF IS “THEY”?!?!?!?!?

It was the GI Clinic’s fault.  But, oh remember when I talked to both doctors on my team and they said I was to have it?!  I was so pissed off.  I was cussing.  I was making a scene.  I called the oncologist’s office while I was in the bathroom after getting checked in.  THIS ISN’T OK!  My time is important.  My voice is important.  Sure, I don’t have to do the prep for the EGD but that doesn’t matter!  No one is accountable for giving me wrong information!  Every clinic was throwing the OTHER clinic under the bus.  Oncology was blaming GI, and GI was blaming oncology.  I even had names of people to talk to and that still didn’t matter.  THIS IS NOT RIGHT.  I’m still ticked off as I am writing this.

Since I am “having symptoms” and 2 years ago I had polyps, I want to know how things are now with me.  I don’t give a flying EFF that this random GI doctor says “the data doesn’t support needing an EGD.”  Didn’t my oncologist call for one?  No one can answer. NO ONE WAS WILLING TO ANSWER OR HELP ME.

Back to this morning:  My BP hasn’t lowered, and my mom convinced me that I had to do this regardless.  No one at the hospital was going to magically help me (what a freaking surprise) and allow the EGD at the same time as the colonoscopy.  When I got into the bed area, changed, and I was still yelling.  My poor mom was trying so hard to comfort and calm me down, I feel bad I embarrassed her.  But, I think she understands my frustration.  I can’t trust anyone to do their job!  THIS is what gives me anxiety. 

I think today was NURSE 1’s first day on the job (at least when it comes to IV’s.)  When I told her that I may be a hard stick, she said, “Oh no, don’t tell me that.”  And she wasn’t joking.  She was serious.  By the way, no one should have joked with me anyway at this point in my morning.  My head is spinning, and all I am thinking about is, “They better not have to do the IV in my hand.  I cannot take that.”  Another nurse comes in.  My mom is rubbing my shoulder.  I hear NURSE 1 say something else that did not help to bolster my confidence in her.  Then, I feel something wet on my arm.

DONE.  I am done.  DONE DONE DONE DONE DONE.

I really had a panic attack.  Not pretty friends.  I hope you don’t judge me.  I am not strong.  I am very weak when it comes to this stuff.  And, I went right back to the bad place and the brain surgeries and that drama.  Then, I went to the chaos with right before the hysterectomy.  All in about 3.5 seconds.  😦  I think my mom was afraid I was in pain.  I don’t think any of the nurses cared.  In fact, I’m mad about that, too.

Nurse 2 or 3 says that she is calling up an anesthesiologist to do the sedation since I am so upset and that doctor can give more than nurses can.  OK, I’m fine with that.  And, it just so happens I passed this doctor it the hallway on the way to the GI Lab minutes earlier.  I recognized her but she didn’t recognize me.  🙂

GI room.  Doctor.  Assistants.  No one told me when they gave me the sedation.  Then, I woke up.

Needless to say, when I got home I started the calls about the EGD.  That is when all the bus-throwing started.

Oncology Office, “GI Lab said you were to have EGD.  We didn’t know you weren’t having it until you just called us.  We talked to X at the GI clinic.” 

GI Office, “Don’t know what oncology is telling you. Don’t know what system they were looking at.  Dr. G (GI doctor who has never seen me before) said you didn’t need EGD so one wasn’t ordered.  We didn’t tell anyone at oncology anything.”

AND – my primary doctor even looked at this “phantom” system and told me the same thing.

What am I supposed to do?  Do you get what I am dealing with here? The level of my frustration? The amount of incompetency by someone, somewhere?  My hunch is it’s all GI’s fault. They messed up.  They dropped the ball.  All because of this random Dr. G (who hadn’t ever seen me before September, so he knows nothing about me or my history).  AND, he better be glad I don’t remember him or what he looks like, because if I saw him somewhere I would give him a piece of my mind.  I AM THE PATIENT.  I AM THE PERSON LIVING WITH COWDEN SYNDROME.  You may or may not have read about this rare disease in a book, or seen “one of us” in school.  But, if you don’t know me or my medical team, I don’t give a crap about you or your opinion.

No mas vertigo

One of my biggest fears since brain surgery is that at some point in my life my cerebellum will give up the ghost.  That it will say, “You know what?  I’m tired.  I’m ticked off that I was dug about for 13 hours and I don’t want to work anymore.  I’m out.”

Of course, I don’t know if brains work that way.  I know that thyroid glands do, because years ago I was told that eventually my thyroid was going to burn itself out.  And, it did.  (This was years before I knew anything about PTEN mutations and Cowden Syndrome.)

I have dealt with severe vertigo since Monday morning.  When I tossed and turned Monday morning my entire world (literally) began to spin on its hinges.  Monday night I had an even worse episode when I tried to get something out of the dashboard on my car.  Tuesday morning the same thing happened (Groundhog Day anyone?) so I went to the Urgent Care yesterday evening.  (I called my neurologist’s office and that’s what he suggested I do.)  After the doctor had me do all the neuro tests (I HATE those tests so much!) he gave me a prescription for a steroid and anti histamine (AND a shot in my bumm‼️) and said he was going to treat for BPPV, because he didn’t know if it was the brain tumors giving me grief or not.

I spent 2 hours at the pharmacy waiting for my meds (such a long story), it literally felt like the longest.day.ever last night.  I don’t feel better this morning.  4 1/2 more days of steroids.  Ugh.

1096 Days Ago

I remember vividly what I was thinking and feeling when Mom took this picture.  So much emotion even today looking at this.

I remember vividly what I was thinking and feeling when Mom took this picture. So much emotion even TODAY looking at this.