Can’t stop thinking about it

I wasn’t going to write about this but since I can’t stop thinking about it, I suppose I should.

I was at the dermatology doctor a few days ago.  (I won’t go into the melanoma risks with Cowden Syndrome right now.)  When I exited the elevator and headed to the check-in window, I heard a loud male’s voice.  I could tell immediately that he was irate about something and was on the verge, if he wasn’t already, of making a scene.  The waiting room area is quite large, so I stayed far to the other end.  Come to find out, he was at the exact window I needed to be in order to check-in.

I made eye contact with one of the staff (who are protected behind a plate glass window, but whatev) and she said she could check me in for my appointment.  The man continued to yell, and I told the receptionist she needed to call security.  She did.

Then she finished my check-in steps and I was finished.  Yet, the man was still where I needed to be and he was still yelling.  I heard another female staff (I assumed a manager-type) trying to talk with him to calm him down.  I heard her say, “Do you need to go to the ER?” and then I heard her say, “If you keep saying things like that I will need to call security.” This guy then really escalates and starts yelling such vulgar and disgusting things (about) one or all the girls behind the plate glass window.

I watched this all unfold as the manager came over to the window I was at and asked the receptionist to call security.  I walked back near the elevators and restroom, and was wracking my brain of what I should do.  Hide in the restroom?  Get back in the elevator?  I didn’t know where the stairs were off hand.  I saw a young man with 2 little toddler girls by the restroom. I told him to get the kids away from the area because a guy was making a scene.

So, all this is playing out in slow motion for me.  I’m getting anxious now as I write this.

What seems like a second later, I see the security guard come off the elevator.  I told him, “Go that way!” and no sooner do I say that the irate man and I are face to face.  I leaned towards the right and bee-lined around him.  I heard the security guard say, “I need someone to tell me what’s going on here.”  And the nice man with the 2 toddler girls said something (helpful) as well, but I was already gone.

I walked over to the window (where I normally would have checked-in) and I said to one of the girls, “I don’t want to be out here.”  She buzzed me inside the doors and I waited there for a minute or 2 before she took me back to the exam room.

I couldn’t speak as I got to the exam room. I told them they probably didn’t want to take my blood pressure as it’d be through the roof.  I’ve never felt so vulnerable in my entire life.

 

Doctor, Doctor, can’t you see I’m running, running…

I was going to sit down and tell you about my GI appointment last week.

But then I got a call from the Dermatologist and received some news on a skin “issue” I have.  I thought she said at my appointment a few weeks ago, “Eczema”.  Turns out it could be a type of dermatitis, or some type of melanoma and I may need a biopsy in 2-3 weeks if it doesn’t clear up.

But I am not going to write about that after all.

You see, I haven’t been under the steady care of a neurologist for quite a while.  That scares the crap out of me.  Considering I still have 2 brain tumors.  But.  Maybe it’s fine, I don’t know.  I just don’t feel comfortable with it.  And, if there’s anything I’ve learned since diagnosis and the all the surgeries I’ve had is that I GET TO FEEL COMFORTABLE with what happens to me and my body.  My choices.  Which scans.  My decisions.  Which tests, etc.

I asked my primary doctor about a referral to a neurologist in one of the neighboring cities.  One office has their first available appointment 23 August 2017.  The next office’s first available appointment is 2 May 2017.  WHUT. THE. ACTUAL. FREAK?!

So.  My options are quite limited, don’t you think?  I’m grateful and so blessed to have insurance, but with the type that I do have, I often get pushed to the bottom of the barrel.  I’m terrified that I’ll suffer and have unnecessary complications because of that.  I’m not sure what’s weighing more heavily on my mind now…the dermatitis thing that may not heal, or the lack of someone watching my brain and my neuro symptoms.

Let’s see now, when’s my next doctor appointment?

 

 

I’m so bugged right now I could spit nails

*NOTE:  This is a venting post.*

Sometimes, I get really bugged that I have Cowden’s Syndrome.

And, what makes it worse is when it takes over a month to see the dermatologist.  I get that it’s a specialty office or whatever, but this isn’t a regular run-of-the-mill thing I am dealing with.

So, if you didn’t know – Cowden’s Syndrome is a beast sometimes.

And, I get ticked off when Dr. L’s office staff treats me like crap.  The good thing (or bad?) is that technically these employees aren’t really HIS staff.  He just has to work with them.  Rest assured I am going to tell Dr. L how 2 of the employee’s there were treating me.

I don’t care for it and it’s not going to fly.

While I’m managing brain tumors (Lhermitte-duclos disease) and the many cancers I’m at risk for, I ALSO can get trichilemmomas(Hindsight is also 20/20 and while I have pondered about this before…I used to have tons of skin tags.  Can you imagine if one of my doctors then would have connected skin tags and thyroid cancer/goiter?  BEFORE the brain tumor had gotten to 5 cm?)

ANYway…

In the Fall of 2011 I got a trichilemmoma (or let’s just call it a skin tag for argument sake) right on my scalp at my hair-line.  Thankfully I was just getting into all the doctors on my “team” and Dr. L was smooth like butta (hah!) and removed it, popped in a few stitches, and I was good to go in no time.  🙂

Cut to about 6 weeks ago…

I noticed I started to get another one.  In almost the EXACT same spot.  I called Dr. L’s office right away.  How many EFFING HOOPS DID I HAVE TO JUMP THROUGH you ask?  Since I’ve been established with him you’re going to tell me it was again smooth like butta to get me an appointment and all was unicorns and rainbows, right?

NO.

“N”, his so-called assistant, made me get a referral.  Then proceeded to tell me he was booked until October something.  Garbage.  I told him, “I HAVE A GENETIC CONDITION AND CANNOT WAIT UNTIL OCTOBER.”  Oh and during all this did I mention that his “staff” didn’t call me back for 3+ days?

After way too freaking long “N” makes me an appointment for next week.

Now, cut to today…

(Oh, and by the by – this “thing” on my scalp is continuing to grow.  Did I mention that your PTEN gene is your tumor suppressor gene?  And if your gene has a mutation you might just continue to grow things?!  THAT SHOULD NOT BE THERE!)

I called Dr. L’s office on a whim and guess what?  He had a cancellation appointment for tomorrow morning!  Of course I’m going there first thing in the morning but you know what else?  “N” didn’t make my appointment for a procedure.  He made an EFFING 15 MINUTE CONSULTATION APPOINTMENT.  WHEN I TOLD HIM NUMEROUS TIMES THAT I NEED TO HAVE SOMETHING REMOVED BECAUSE IT IS GROWING BIGGER.

[Dear Readers:  When I started this blog over 2 years ago, my purpose was to update my friends and family about the brain tumor and surgery.  Now, it’s turned to so much more.  Life with Cowden’s Syndrome is sometimes wrought with frustration and anger for me.  This part of the Internet I own is to give value to my voice and share that tonight I’m mad.  I’m mad that Cowden’s Syndrome has invaded my life in such a perverse and evil way.  EFF you Cowden’s.]

How has my blog been turning up in searches?

Funny you should ask.  🙂

I have a post mulling around in my mind – about my brain tumor support group meeting last week (my first one since surgery!); the pain I’ve had in my right breast {still} the same one that caused the drama this summer; counseling; looking for a job/income/my JR Watkins biz I just started [YAY!]; the volunteering, etc.  But that will have to wait until I’m recovered a bit more from this virus/croup garbage in my lungs and sinuses.

(BTW:  What are your thoughts on flu shots?  I’ve never been a fan for the risk of the side effects.  But this is the 2x this year I’ve gotten SO severely ill.  I’ve asked one of my doctors about it and he isn’t a fan.  I’m going to see my Primary this week to talk to her about some things and I will bring it up…just wondering if anyone else is a fan of them?)

I was searching through some of the topic/key word searches that gets people to my blog.  Now some of them are “typical”, including:

  1. gangliocytoma brain
  2. cowden
  3. lhermitte’s duclos disease
  4. cowden syndrome support for kids
  5. craniotomy with tumor resection
  6. brain tumor ldd
  7. hydrocephalus
  8. cowden’s syndrome support group
  9. pten mutation genetic
  10. cowden syndrome bumps on tongue

Which means things are going forward on my blog the way I want them to.  (Urg, bad sentence but you know what I mean.)  First this blog was to just tell friends and family about the brain surgery I was having.  NOW…it’s so much more (thanks to my friends Cowden’s Syndrome and Lhermitte-Duclos Disease).  I am going to continue to do all that I can to raise my voice about these 2 rare diseases.  The Internet is an amazing place and some incredible connections have been formed for which I’m very thankful (This blog and this other one are just 2 to name a few)…

BUUUUUUUUUUUUUUUUUUUUUUT.  There are a few more I wanted to add that I thought were quite particular.  And wanted to share:

  1. why hasn’t my dermatologist called me with my results
  2. “brain tumor” , “play on words”
  3. before you judge my life my past or my character
  4. from the mouth of babes
  5. i wonder how people get time
  6. heads up brain wife heather means
  7. orphan the toe
  8. i do too enjoy our conversations
  9. don’t judge me until you’ve walked in my shoes
  10. adopted dog promise pic

* From this group – #5 and #7 are my favorites.  🙂

 

Conversations Part #2

So as I walked into the counseling office I sat down on the couch.  We said our pleasantries as we always do.  I thought I was OK.  I didn’t think anything was really going to happen.  I had my water, some almonds, and I thought I was good to go.  I knew I was struggling with some anxiety about my head/brain…but I was really trying to work some of the tools I’ve learned since coming to therapy.

When I start a session I usually tell her a bunch of things going on…and then whatever “sticks” is what we talk about.  So last week I had:

1).  Prophylactic bilateral mastectomy.  When I left the oncologist’s office a few weeks ago I wasn’t feeling too hot.  I go back and forth with things.  Some days I think I’m going to play the odds…and just “wait and see”.  IF…and only IF something happens.  Then I’ll deal with it then.  But when I left Dr. L’s office last week I was pretty sad.  When I reach 50-55 years of age the breast MRI screenings will stop.  I’ll just be screened like a normal woman with yearly mammograms.  How does that work since I’m high-risk for breast cancer?  Does that mean I SHOULD have the PBM?  But I have NO FREAKING FAMILY HISTORY OF BREAST CANCER!  I swear to you.  This decision would be “easier” – if that makes any sense at all…if I had family history.  But as my wonderful dermatologist put it…“Yes but Heather.  Your genes are different.”

BIG FREAKING YAY for different genes.  GAG.

2).  I have no money.  I have no job.  I am getting nervous.  I start to feel like a burden to my mother.  I can’t enjoy life as I did because I’m restricted.  I’m trying to make the best of a bad situation and hoping “this too shall pass”

3).  My head.  My brain.  Feeling off last week.  (And I’m feeling better today.)  Struggling with going to “Z” with the tumors.  The fear.  The unknown.  The anxiety of it all.  There are tumors growing in my head and there’s not a damn thing I can do to stop it. No matter how much weight I lose, how much water I drink, how many prayers I say, how many times I do the rain dance out in my lawn.  NOTHING.

So I put all this out on the table…and then our conversation went to my head and my brain.  And then I say something about the “S” word.

The shunt.

And here we go Ladies and Gentlemen….

So much emotion.  So much fear.  So much bottled up inside that I could not keep it in any longer.  This was one of the worst panic attacks I’ve had since December of last year. I thought the bottom of the couch was going to open up swallow me whole.

Gag. Me.

I had a doctor marathon today.  3 appointments and I’m glad I got them done.  One was a procedure to check my thyroid…as I have this dang piece of thyroid tissue (lymph node?) that shouldn’t still be there.  Er, well we don’t really know what it is.  Or, I don’t know.  But we thought it was remaining thyroid tissue years ago and that was why I had the 2nd thyroid surgery in 2006 but then I was never quite clear if the surgeon got it.  Anyways.  My tonsils are (kinda) growing back.  Tonsil tag.  Have you heard of it?  Not to be confused with tonsil hockey.  And not like anyone wants to play it with me anymore since I don’t have them.  But Cowden’s is all about overgrowth (hyperplasia) and that’s why I have these scans to make sure the remaining tissue stays stable.  I’m not sure what would be the next step if it began to grow back too.  Because I’m not down for another surgery.  ESPECIALLY since I’m kicking out my uterus.  And maybe my Dairy Queens…

Although this was a different technician and hospital where I had it done, [I sure hope that has something to do with it] it seems the measurements of said tissue are bigger than at last scan.

Gag. Me.

Some of you may know I’m in the “gathering phase” [as I call it] about what in the world I’m going to do about my Dairy Queens.  One of my friends says, “NO NO NO NO NO” – as I have no way of knowing IF I will get cancer.  IF I do…then deal with it at that point.

OK, I’m on board with that. 

But at the oncology appointment today I got some clarification on what will happen for me when I reach 50-55 years old.  Right now I’m being screened pretty thoroughly with mammograms and breast MRI’s alternating every 6 months.  When I get to 55 ish, the breast MRI’s will stop and I’ll just have the mammograms.  The reason that doesn’t sit will with me now is that is how “regular” women get screened.  Dr. Mom doesn’t have CS and she gets yearly mammograms.  So what will be done for me since I’m high-risk IN PLACE of the breast MRI’s?  The MRI’s now are done since I’m younger and there’s more estrogen in my body (or something like that).  If I decided to just play the odds (which I USED to think I had good luck but with the type of brain tumor that makes up less than 1% of all brain tumors or some such thing, maybe I better hedge on what I KNOW)…then what happens when I get to 55 ish?  Of course I’ll know my Dairy Queens quite well as I will have felt them up for the last 15 years.  But that’s a lot of pressure for me.  A LOT.

You know?

And then also there’s the decision about my uterus.  Gag. Me. AGAIN.  This isn’t even really Cowden’s related but yet it will be an added bonus to have it go.  I’ll get into that more later.  And I will need to write about my colonoscopy and the pathology and I’ll get to that.

Right now I just have to get through the hysterectomy pill and then next will be the PBM.  Or will it?  I don’t know.  How do I make this decision?  It’s one less thing to worry about, sure.  But I’m thinking about…what about the new changes to technology and maybe in 10 years there will be another way for women who are high-risk for breast cancer to get screened?  Like I told Dr. Mom and Dr. B recently, I think this decision would be “easier” to make more QUICKLY if I had family history.  But as I was talking to my dermatologist today – he understood but then he said, “Yeah but your genes are different.”

Gag. Me.

Busy, loss, pressure (Photo of the day 9/27/12)

I’ve been busy lately. It’s great.

Typing a blog post in my iPod is kind of hard.

Haven’t had much medical stuff going on lately although next week I have GI follow up, thyroid ultrasound, and oncology appointment. That will be a busy week. Oh yes and dermatology too.

Talking with my counselor yesterday about the loss I experienced last year after diagnosis of the brain tumors. Then genetic condition. Experienced some SHOCKING loss tonight too. Tuck and roll friends. It’s all we can do.

I felt stretched too thin yesterday so I canceled my tutoring appointment and took some “me time”. Went hiking for 40 minutes. Loved it. Missed it. Will do more. I knew I needed space and needed to be with Heavenly Father to experience His blessings of nature.

I love editing photos on my iPod!

20120927-083502.jpg

Doesn’t this look like a scene from a Tim Burton movie?

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?????????????????????????????????????????

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.  Nice.  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.

I have wonderful news!

The Dermatology office called me earlier today to tell me Dr. L got clean margins last week!!!!!!!!!!!!!!!!!!!!!!!!!!!