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.

 

Staying focused on my goal

  • I am having major surgery (hysterectomy) to manage my uterine cancer risk and to GET RID of any potential beast that may cause any more havoc in my life.  There is enough to worry about with my cerebellum and the gangliocytomas; my uterus isn’t helping me at this point in the game.  It is time to go.
  • Most of today (besides wrapping presents with Nephew #2, and enjoying my time with both my nephews) I have been frantically working in my room trying to make some headway in the mess that is there.  Clothes are put away.  Dresser is getting cleaned.  I am working hard!
  • Do you have any movie or book recommendations for me to watch/read during my recovery?
  • For those who don’t know, I am a member of the Church of Jesus Christ of Latter-day Saints.  At church this morning I received a Priesthood Blessing and feel a bit more sure-footed going into Wednesday morning.
  • Dr. K (surgeon) said he thinks I will be in the hospital one night and barring any complications (NO WHAMMIES!) I will be home from the hospital Thursday.
  • As I try to recall often, “There’s a lot to be said for hope and miracles.”  Looks like I am going to be dipping into the pots again of both.
  • This message is brought to you in part by Cowden’s Syndrome (PTEN Hamartoma Syndrome).  Granted, I still might have had this surgery if I didn’t have a genetic mutation (rare disease), but CS is sure making my decision much quicker for me!

Latter-day Saints believe in the resurrected J...

13

It dawned on me this morning the hysterectomy is in 13 days [!]

What does that mean? What am I supposed to be doing?  Thinking? Feeling?  Should I be doing more?  Less?  I keep thinking back to the few days before the brain surgery.  I walked in a fog.  Sheer terror and panic engulfed me.  But, this?  It’s different, right?  I am going to be losing PARTS OF ME.  These “parts” aren’t necessarily bad in theory (because a brain tumor = BAD)…but yet, what?  My body isn’t on friendly terms with my uterus much.  My uterus cannot be trusted anymore.  I cannot risk it turning angry in the next X amount of time and then me having to face cancer.  It’s weird. It’s hard. It’s scary.  It’s a mess.  I’m a mess.  These are the decisions I must face due to Cowden’s Syndrome.  There is so much unknown.  What if I get cancer?  What if I don’t?  What if I am making the wrong decision?  This is final.  No going back.  And yet I wonder at times, “Will people look at me differently?  Will they be able to tell?  Will people pity me?  Oh, she’s the girl who had to have a hysterectomy because she might get cancer?  Poor, dear.”

This is real life, folks.  No unicorns and rainbows here.

This morning I have thought about all the things that you can do in 13 days.  I went off to Dr. Google (my pet name for him) and found some things I’d like to share:

  1. With 13 days to live, what would you do?  (To be honest:  I didn’t read the entire link.  It’s not unicorn and rainbows and not something *I* should read now.  13 days before the hysterectomy.  ANY surgery comes with risks, and yet I feel I am forced to have this surgery [to remove my cancer risk] and I am walking into this willingly.  Does that make it better?)
  2. 13 things your Mail Carrier won’t tell you (I’m going to check #7 next time I get the mail.  Wouldn’t that be neat if it’s really true? AND…who’s experienced a nice #11?  YIKES!)
  3. Mentally strong people:  the 13 things they avoid (I need a big cup of this now!  Do I consider myself mentally strong?  I think I should be strong considering the things I’ve endured.  But, it’s just practice, right?  Sometimes I can fake myself out thinking I am mentally strong.  Then, as I think ahead to 12/10….nah, not so much.
  4. 13 (musical) (This looked cute.  I need more musicals in my life.)
  5. Mother shows up ALIVE 13 days after her own funeral (I don’t have words for this.  I am not trying to be macabre with some links about death and dying.  I am completely floored by this link!)

The bottom line is that I have 13 more days to process, pray, and breathe about this pending surgery.  This surgery is not like last time.  My head is not going to be cut open for 13 hours.  This time it will be different.  I am different.  I walked through those 2 surgeries and survived.  And, you know what else?  I’m probably going to have more surgeries in my lifetime.  Now, I don’t ever want to get passive about this (surgeries are NOT a way of life!) I must somehow wrap my brain around what is.  I made this decision for the hysterectomy to take control of my life.  Cowden’s Syndrome is in my life but it is not my life.  Balance.  Practice.  Falling and then getting back up.  Fear, then faith.

Housekeeping

  • It’s crunch time as the surgery date looms closer.  I am doing the best I can to keep busy.  Staying hydrated, calm, exercising, going to the chiropractor, etc.  I can and will do this!

Calm

  • Have you heard of Lynch Syndrome?  The Internet and The Twitter (HAH) are amazing things.  Really.  I have connected with a few people who have this syndrome and I’m floored at the similarities between that and Cowden’s Syndrome!
  • How did you spend your Saturday evening?  I was in the ER, in fact.  (Groan!)….something appeared to be very off with my calcium.  Tingling in my hands and feet and my lips were numb.  I had muscle spasms in my neck and had a very nagging and annoying headache all week.  Since I was home alone I decided I best go check it out.  I kept hearing in my mind the words from one of the radiologists (“With you we have to be really careful.”) – and instead of worrying about it all weekend I could go get it checked out.  Right?  Well, of courssssssssse my calcium was right in the normal range!  This is good!  But what the freak was causing my symptoms?  Could it be because I have a rare, genetic condition?  HAH.  Doubtful.  The very cool ER doctor called it “Hyperventilation Syndrome”.  Urg, enough with the syndromes already!  Which seemed weird to me because I hadn’t been bothered or stressed on Saturday.  No matter. The point is that he gave me an Ativan (yum!) and I slept it off, apparently. The tingling is gone.  WEIRD.

English: Emergency room after the treatement o...

  • I am actually getting very excited for Black Thursday (are they calling it that now?) – I only shop at the big “T”.  I refuse to go anywhere else – and in fact, I’m actually almost done with my shopping.  I wanted to get as much of it done as possible before the surgery 12/11.

Target

  • So, if I haven’t been clear I am having a hysterectomy on 12/11.  For many reasons, but I guess I should remind myself that I am taking my healthcare in my own hands and choosing to NOT get uterine cancer in the first place.  Approximately 28% risk of uterine cancer comes with Cowden’s Syndrome – NO EFFING THANK YOU.  You know, that’s pretty big odds to me because cancer is cancer.  And considering I have Lhermitte-duclos disease, which is a rare brain tumor making up about 1% of all brain tumors, I don’t really want to play those odds.  So, easy decision, right?  You’d think it would be.  You’d think I would be saying and feeling, HEATHER.  You will not get cancer if you do this.  WHEW.  You have the power and control.  You are strong and empowered.  DO THIS AND GO FORWARD IN FAITH.  However, it’s not always like that.  The stark, painful, reality that I will not ever get to be a mother nags on my heart.  Very heavy heart at times.
  • “There’s a lot to be said for hope and miracles.”  I told a family member this who had just gotten diagnosed with breast cancer.  Time for me to put that into action:

Hope is the state which promotes the desire of positive outcomes related to events and circumstances in one’s life or in the world at large.” [copied from Wikipedia].  I want positive outcomes related to this upcoming surgery and with my overall experience with Cowden’s Syndrome and Lhermitte-duclos disease.  I WANT HOPE.  What am I doing to promote this?  That is the question!

“A miracle is an event not ascribable to human power or the laws of nature and consequently attributed to a supernatural, especially divine, agency.” [Wikipedia].  I have always said that coming out the other end of a 13-hour brain surgery is pretty miraculous indeed.  There are miracles all around me too.  I try to look at them daily.  My family.  My cats (I heart them).  The fact that I’m walking and talking and typing.  There’s more miracles folks, I know there are.  I just need to wind up this post.  Thanks for reading!

It’s not like last time

This phrase has gone around and around in my head for the past several days.

“It’s not like last time.  This surgery is not like last time.”

I am just breathing.  That’s all I can do for today.

I have a lot to write about this.

More soon.

*I just realized I have more posts for the “pre-op” category.  Part of me cringes at that fact.  The other part of me just MUST accept it for what it is and walk forward.*

30 days

Hi folks:

I’m having another surgery in one month’s time.  (Check out this picture I found.  HOW thankful am I that it’s not 1922?!)

Surgery c1922 LOC npcc 23059

Surgery c1922 LOC npcc 23059 (Photo credit: Wikipedia)

I cannot believe that I would sign up for another surgery; granted, last time I didn’t sign up for it.  I will write more about this in the next 30 days, I’m sure.  The surgery itself, the emotional side of it, the practical side of it (decreasing my cancer risk due to Cowden’s Syndrome), etc., I have really made a conscious decision to change my body in the mean time.  Too bad I didn’t have my crap together this entire year (as I had planned!) to lose 20 pounds before hand.  Alas, you can do what you can do.  I accept that part.  What I do not accept is being passive about Cowden’s Syndrome and Lhermitte-duclos disease.  I will do everything in my power to take control of my healthcare, which is more than just removing body parts that will (might?) get cancer!

“Fear get behind me”

I keep telling it to, but it’s not listening very well. FHE was so wonderful last night, I received a Priesthood blessing with my extended family (my friends) around. People must endure hard things all the time, and I can’t forget that I am not alone. I was struggling a bit last night with the “Why me?” but I know as quickly as those thoughts come I need to push them away. Packing the car now. Be in touch soon. Thank you for the strong prayers and of faith..it is what is helping me and my family push forward in faith. Yesterday I spent some wonderful time with the boys here watching “Monster House”. I think they know something is going on, and with their strength too this too shall pass. This too shall pass. My family and friends are amazing.

Waiting

We are waiting. This is hard. Surgeon’s office will be calling to let us know what time we go in tomorrow morning. Waiting is frustrating. Makes my stomach hurt. They told Mom in at 10 tomorrow then surgery Wednesday at 7:30 a.m.

Positive and Petrified

How do you reconcile between the 2? My Mom is so great about being positive about this whole thing…finding out about it when we did. (I think I want to give it a name because the “T” word is still hard for me.) The surgeon told Mom that my symptoms I had several months ago weren’t connected (in his mind) to this. He would have expected either worse or different symptoms. And, what is so ironic now is that I no longer have the headaches and shaded vision. Now, it’s my balance and speech. But the balance issues have been so subtle that I hardly even noticed them until now. I’m reading about positive things, and the link I posted on Facebook are all things I am trying to do. When the scary comes back, I try to remind myself that this is a good thing and this bad thing is coming out. I’m also making some lifestyle changes, which I know we’ll never know WHY I got this, but I can do some things in my control to alleviate the chance of this again…without placing blame. And, I think I will name it Chuck.

None of this makes any sense to me

But, I guess maybe it’s not supposed to? All day at Disneyland today I looked at people and thought, “Do you realize how good you have it?” – but then in hindsight, I really do have it very well. Yes, I have this petrifying thing I must walk through, but I have a roof over my head and family (who are pretty awesome) and the Gospel of Jesus Christ in my life. I pray every moment of the day. When I head towards the bad place, I muster every ounce of courage and strength to bring it back to center. Tonight, I spent the evening with my brother and his family and we had a BBQ and watched “Toy Story 2” and “Jungle Book”. I’m finding I’m so over tired, but I’ve just been getting up so early these last few days. Scared doesn’t even begin to describe this. There isn’t really an adjective to describe it accurately. I am trying. I am trying to be strong. Prayers help. Miracles happen. I am so thankful for everything everyone has done on my behalf, and on behalf of my family. My brother and Mom are stronger than I ever could be. I know that my Dad is helping all of us too, and every moment of today too I would say, “Dad are you here?” – then I would try to be calm and feel his presence too.