Dinner time

Spinach crab salad, blue cheese crumbles, walnuts, yellow peppers, dill pickles, tangerine balsamic vinegar, and now I’m gonna eat it!

Foreign

I told Mom that someone from one of the online support groups I am in is from the Netherlands. She replied, “Well, anyone can have it.”

I KNOOOOOOOOOOOOOOW that. It’s just weird to me is all.

Of course, it’s no different if I had brain cancer or thyroid cancer (which I did have). ANYONE ANYWHERE can have that. But…I guess because I’m wearing this hat so PERSONALLY now…and it’s a “rare disease” of 1 in a QUARTER MILLION PEOPLE…

It’s just weird…

I don’t know.

I mean…it’s the NETHERLANDS!

No one can hold my hand

Tomorrow I have my 1st kidney screening and I’m scared.  And you know?  I’m a big liar because there will be no positive post after this.  It’s late and I’m tired and I need to get this out of my head and get to bed.  I tried.  I tried to put on a happy face today.  I got up and I got dressed and I walked for 40 minutes and I went to Family Home Evening.  But my heart isn’t in it.  Because I’m so scared.  I want to be a survivor.  I can’t change anything about what’s going on.  I KNOW THIS.  I can only change my reaction to things yet THAT IS WHAT I AM HAVING SO MUCH TROUBLE WITH.

I have to go through this alone, the doctor appointments.  I can’t have anyone hold my hand.  I had those warts burned off my hand today that were just out of control.  I probably should have taken a picture they were so hard and disgusting.  Total over growths of tissue.  HELLO COWDEN’S SYNDROME.

I talked to Dr. L about a chemo drug (B something) but my lack of insurance won’t cover it so he wants to try some other stuff first.  But I CANNOT live the rest of my life having these 3 warts on my hand frozen off every 2 weeks, can I?  What is the option?  Huge MONSTER growths on my hand?  Then I really will feel sick.  I try to think positive because when I hear “rare disease” I associate “sickness”…but then I think, “Well, I don’t really FEEL sick!?” – but then I look at my hand, or think about my head and what’s in my cerebellum, or the healing of where I had the mole removed, and think….“Well, Heather.  You kind of are sick.”  REALITY CHECK.  That sucks.

And then here’s another slap in the reality check department.  The ENT I saw a while back for this thing in my mouth told me if there was something white or black in my mouth to let her know right away…because that’s a sign of oral cancer.  AND…on my tongue I have these bumps (papillary or papilulues or something) and they have just been chillin.  They seemed to ALL COME after my neurosurgery last July.  Well just today I noticed one (a new one) on the end of my tongue and it HURTS.  Bad.  I thought I just had eaten too much salt or something yesterday.  Then this afternoon I look at it and it’s white…not colored like the rest of the ones in my mouth.  And then tonight…it’s black/grey.  DEFINITELY not like the other ones in my mouth.

I see the ENT on Friday.  I was supposed to work on Friday.  Did I mention that I also have no job and no money?  I have anxiety and don’t have any IDEA how I am supposed to work and manage all this and my bills?  And life my freaking life?  I want just a WEEK with no doctor appointments?  Is that too much to ask?  WHAT IS WRONG WITH MY TONGUE?????????????????????????????????????????

And so for every whiny post I write….

…I will add a positive one.  That sounds like a good plan.  To end my posts on a good note.  Mom and I went to the park to watch the kids race their pinewood derby race cars.  It was super fun.  They kids had so much fun and both of them were in the Finals! 

Blessings.  I have blessings all around me.  I have struggles everywhere I turn, but then I need to counter them with blessings or the reminders of them.  I guess that’s why my room is filled with pictures, too.

Headaches

Here’s why I get frustrated.  There are so many things I feel I “should” be doing…but sometimes it’s all I can do to get up out of bed.  BUT I DO GET UP OUT OF BED.  That’s huge!

I should be looking for a job for summer.  But it’s all I can do to manage all my doctor appointments.  Plus I am having the kidney ultrasound/screening on Tuesday and I know one of my virtual friends from the online support group has/had kidney cancer and has only one kidney.  That concerns me, greatly.

I’m tired of headaches.  Just plain effing tired of them.  But Mom brought up a good point because we were just outside in the sun and she had one too.  I feel more sensitive to them now and I need to find a hat that will fit my big head.  I never really felt that I had a big head but I guess with Cowden’s you have a big head.  I vaguely remember growing up sort of having issues with hats fitting in softball but nothing out of the ordinary.  I mean I had my hat in games and for pictures it was no big deal.  As an adult it seemed a bit more prevalent but I never gave it much thought.  And then I found out from the geneticist that having a big head is one of the symptoms of CS.  Big freaking whoop.

I was supposed to go to Disneyland today and that fell through.  I got a weird/new/bad/scary headache last night that came with a nice plate of nausea.  And with the heat, upon waking I just felt I needed to stay close to home today.  So, I passed on it.  I’m so sad because I haven’t been since February and that’s just way too long.

Because I want to

This pic speaks for itself!

Pretties

Because on my 1 hour walk yesterday…these caught my eye and I wanted to capture them. 

Infections and cancellations

Hi.  This is kind of a whiny post, so you have been warned.

I’m so effing tired of infections on my body.  In my body. I don’t know.  I’m just tired of them.  One of the stitches from the dermatology appointment incision is infected – AND his office called yesterday to confirm the appointment for tomorrow then called TODAY to cancel the appointment. Plus I have another infection ( in another area) which means I have to start antibiotics.  Niiiiiiiiiiiiiiiiiiice.  Not Nice.

UMMMM….I have a bit of a problem-o here. So I told the girl and she told the medical assistant and they are getting me in tomorrow with a different doctor.  OK, I am OK with that.

Then I also had an appointment tomorrow with a G.I. doctor for a consult for a colonoscopy and endoscopy and have had this appointment for no less than TWO MONTHS scheduled.  Same thing happened with confirming and then CANCELLING.  Doctor isn’t coming to this office for X amount of time and the soonest they can get me in is AUGUST.  FREAKING AUGUST.  Now, Cowden’s Syndrome affects 1 in a quarter million people.  And I haven’t looked recently at the stats for colon cancer because I’m trying to keep my anxiety under control and get back to my life – but with a recommendation of a colonoscopy 2x a year – the odds are NOT GOOD.  And I don’t want to wait another 3 months.  I just don’t.

And, I think I have sleep apnea.  My weight isn’t helping that possibility of that.

AND, anxiety makes you hold onto cortisol or something….which increases belly fat.

BUT, the good news is that I can hold a plank on my knees for 30 seconds which I could NOT do 5 weeks ago.  So, the gym is paying off.  My weight is just creeping up and I get discouraged.  I don’t know how to reconcile that.  I want my life back.  EFF you Cowden’s.

Orphan disease my big toe!

So, I don’t like that phrase…”Orphan disease”.  Not at all.  I’ve been running in circles trying to find advocacy groups, etc.  None of the rare disease organizations have any!  Well then HOW THE CRAP DO we get one started!?

Anyway, this post is not to rant about that…I will get something done, somehow, someway.  But, I wanted to see if anyone could give my friend some love.  Here’s the blog link and I haven’t figured out how to do the hotlinks (?) yet on WordPress so you’ll just have to copy and paste or find the link on my blogroll.  The blog title is called, “Beating Cowden’s”.  Would you read the blog?  If you have time, if nothing else – it will help you understand what I’m going through too.

And I want my new virtual friend to feel some love.

http://beatingcowdens.wordpress.com

PS, and I hate the term rare disease too.  I feel normal.  I don’t want to be sick!  I guess I always associate disease with sickness and that doesn’t help my anxiety either.

Mini-worry time

OK.  Time to vent:

1).  There’s not a day that goes by that I don’t think of the tumors in my head.  And what will happen with them.  And when they grow bigger what will happen.  And when (IF?) I have to have the shunt.  And how will my life change?  Can I still be active?  Can I still work out hard like I just did and sweat so much like I did?  OK Heavenly Father – this is where You come in.  This is where I have to figure out how to give this to You.  How do I do that?

2).  I have been working out for the last 5 weeks – 2-3x per week HARD (1 hour…sweat in my ears so hard) and eating salads and protein shakes (dinner and breakfast respectively) 4x per week and I haven’t lost any weight.  I’m exhausted pretty much all the time.  I know that working out is supposed to give you MORE energy right?  That’ not happening here folks.  And the 2-3 pieces of chocolate I have a day should NOT be contributing to my exhaustion or continued weight gain.  What WAS contributing to it was a few months ago only walking 20 min. per day and eating a Cadbury Egg a night…among other garbage.  Then I get the crap scared out of me…scared crapless because none of my clothes are fitting, etc. etc.  Then…this exhaustion sets in where I CANNOT get out of bed in the morning.  Going to bed at 10:30 or 11 should not make me SO tired in the morning at 7:30 AM where I can’t get up.  So I’m thinking something is up with my depression again, or something deeper.  I’ve been thinking about my ovaries.  Ovarian cancer is not one of the many things I have to worry about for the rest of my life – but it’s a cancer none the less, and Cowden’s is all about the cancer stuff.  My ovaries weren’t visualized on my last 2 ultrasounds and one of my doctors said that as you get older they get smaller, or something.  She didn’t seem too surprised that they weren’t visualized.  BUT….

What if there’s a problem with them?  I did read something on Twitter about Ovarian cancer symptoms but I didn’t look at them too thoroughly…but one of them I think was exhaustion.  This is weird exhaustion.  Not normal exhaustion.  And, on the other days when I’m not at the gym I’ve been walking 30-40 minutes a day.  Something isn’t adding up.

3).  I have no job and no money.  Freaking Cheers.

Oh…………….wait.

OK, that has to be all of worry time right now.  I can’t handle much more and I need to go do other stuff.