Not Lhermitte-duclos Disease and Cowden Syndrome (kinda)

I have racked my brain for the last few weeks about something to write about that’s non-medical.  But, let’s face it.  Pretty much my whole life revolves around medical everything or how medical somethings have fundamentally changed my life for the much, much, worse.  But, since I am a list maker, list writer, list-follower (?) I thought it’d be a good object lesson for me to write some things going on that aren’t really brain tumor related.  So, here goes:

  • Saw a nutritionist last week.  She said no more protein shakes after my workouts, and instead to drink 2% chocolate milk.  I’m all for trying something new!
  • This is my birthday week!  Celebrated by getting a fancy manicure and DID. NOT. BUY. the Fossil bag I have drooled over for months (in Mushroom, BTW).  That, there, is growth!
  • Last night I spoke at a treatment center in a Twelfth Step panel.  Quite the experience!  🙂
  • Just before I began this post, I was at the animal shelter in the Cat Rooms.  I noticed that one cat in particular, Rita, didn’t look right.  Her hair seemed wet, and I guess she could have gotten in fight with another one and they could have fallen into a water dish.  But, what’s more likely is that she is ill because I heard that there is a something going around there.  I told the front office staff and I pray they look into it.
  • Been doing quite a bit of genealogy work on my mom’s family line.  I hope to never hear, “Oh, all my work has been done!” because it’s never done!  I love it so much.  I know these ancestors of mine are real people and they just wanted to be found and validated as once living souls on this earth.
  • I am thinking about doing another Booster fundraiser t-shirt.  (Especially since I shrunk mine in the dryer this morning.  #FacePalm.)  Would you be interesting in buying one?  More info. on this soon.
  • My new favorite reality TV shows:  Number 1 and Number 2.  Color me hooked; only for a few reasons.  #1 – because the single, girl in me hopes for love one day, no matter what the way. And #2 – because Days of Our Lives.
  • I have a trip planned in July and I am SO. EXCITED.  Here’s a clue:



Oh July


Here we are at July once again.

July Wallpaper

July Wallpaper (Photo credit: Auntie K)


I know I’m going to be writing more about this as the month continues; as it gets closer to the 18th and 27th.

I’ve always been a numbers person, and I guess an anniversary person kinda, also.

2 years folks!

2 years ago….I experienced things that rocked my entire world.

I’m thankful to be here today.

And I’m thankful for all of you.  For all of you who prayed for me.  Who thought about me.  Who hoped for my health and recovery and well-being.

Miracles happen.  Miracles are everywhere.

[As I told a friend of mine a bit ago, there’s a lot to be said for hope and miracles.]

Place your bets

Could it be Cushing’s Syndrome?






are we still looking at Diabetes Insipidus?

I thought I was done with D.I.  I haven’t written a post yet about the protein powder and the polyuria.  That will come.

Found out today from Dr. S that we’re not in the clear yet.  The one blood test I have waited for over a month “Argin Vasopress” (Plasma ADH I think) was <0.5.  Undetectable.

This wasn’t the news I was expecting.

God lead me to a special person….

The Power of the Internet for Good.

(Please click on the link below.)

God lead me to a special person…..

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.

Here we are folks!

Here we are friends and family. ONE YEAR AGO was my surgery. Just wow.

I’m not going to post too much as I’m in Oregon with my family. I’ll post some pictures next week.

I thank you all who pray for me, last year and this experience and what is before me.

It helps. Works. I’m grateful,

I would be remiss…

If I didn’t express my thanks to those who offered prayers and good thoughts for me Tuesday for my MRI.

For another post I’ll write about what happened that morning with the machine having to be rebooted, but I noticed after the test finally began (after the delay) it seemed to go much more quickly than I remember than last year. And this MRI had the contrast too!

I remember the technician telling me I was about 1/3 finished, then next thing I remember he was pulling me out of the tube getting my arm for the vein for the contrast. Then I was being pulled out of the tube for the last time & I was done with the MRI!

Prayers. Blessings. Pain eased this time. Thank you.

A day in the life

Tomorrow I have another doctor appointment. I just had a pelvic ultrasound last week and tomorrow is the mammogram. Another thing a Cowden’s Syndrome patient does is attend doctor appointments again and again. And I’m in the midst of the screenings of my breasts.

Every 6 months I’m going to be doing this.  Breast MRI and mammos. Until I make the decision for the PBM. I have to admit the tiny inkling of, “What if?” something comes up is haunting me tonight.  I don’t know how long I can keep looking over my shoulder…

I picked veggies to try to distract me. I will pray my guts out tonight. For peace and comfort. That’s all I can do.


A normal person feels like this?

Yesterday and today I noticed a change in me. Not sure what has brought it on. The counselor asked me that today actually and I told her I think the change has been brought on by the continued prayers. Either I’m at a better place to receive them or more of them are coming. I’m not sure. But either way today and yesterday felt different. Better. I’m thankful. Happy. It’s nice to feel kind of normal. I forgot I had brain tumors and they didn’t consume my every breath and waking moment. I ran errands, I walked at the park, I called a friend, went to an appointment, and felt like I had part of my life back. The life I had before July 18, 2011.

I know tomorrow might feel different but I’m grateful for this awareness of gratitude today.

If you have prayed for me, thank you doesn’t begin to cover it. Thank you.

Busy is good

Busy is good.  Being positive is good.  Seeing a counselor is good.  Researching all I can about Cowden’s Syndrome is good.  Walking is good.  Staying in faith is good.

Good days will come.  Bad days will come too.  I have to get some routine back in my life and I think I am doing some parts of that.  Or some normalcy, or some things that I did before I got sick. I walked a lot before the surgery. I read and I crocheted and stuff like that.  I really enjoyed the counselor I met with today and I should have taken notes!  🙂  But, I need to build back the trust I had before July 18.  I have all these thoughts in my head and they are so scattered, but as much as I want to write “well” – I just need to get them out of my head.  Hence – writing here.

My anxiety is heightened, obviously, but I am stronger than it and I will not let it overpower me.  So, as soon as this post is finished I am going to get away from the computer and no longer doing any more research tonight on Cowden’s and ECGC and PTEN and mTor inhibitors and things of that nature.  Part of me thinks I get the connection between all of this  but then part of me is still confused about it.  If in fact the labs come back with confirmation that I have this syndrome – the broken gene means my body has problems suppressing tumors.  Then mTor comes into play – but I haven’t yet figured out how exactly.  And there is ECGC, curcumin, and reservatrol (sp?) that also come in that are positive things.  So.  Instead of staying online until 2 a.m. trying to find the answer RIGHT NOW of what I need to do RIGHT NOW to start taking a supplement or herb or pill or whatever RIGHT NOW (so that I can be healthy and healed and be OK!) I have to remember that these tumors didn’t develop over night and that doing the footwork is going to take time.  This is OK.

Faith without works is dead and I am working on my faith and making it stronger – making that muscle stronger and I am also doing the works.  researching and praying and pondering about these things I come across in my health journey and asking God if this is the right road for me so that I may have the most optimal health throughout the rest of my life.

And, it”s 9 p.m. which is my cut off time.

Good night.