Because Previvor (Photo of the day 1/22/14)

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6 weeks ago today I became a Previvor. I decided that the risk of uterine cancer wasn’t ever going to haunt me again!

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Right before

You know, I have debated about whether I was going to write this post.  The one that is the day of surgery.  The emotion. The fear.  The worry.  The “trying to be calm but not” feelings.  All of that.

But as I have pondered things these last few weeks since the hysterectomy I decided that I should write this post.  And, I will.  Because my voice has value and meaning.  And, while my blog has a lot of non-Cowden’s Syndrome and Lhermitte-duclos stuff too, its main purpose is to raise awareness for rare diseases.  Two of them, to boot.

So, here we go…

I guess one of the good things about there being some distance and time since that morning of surgery is that my emotions are not so raw today.  Not as tender; however, some of that morning’s events are etched in my psyche forever.  Not to be dramatic; just stating a point.

I remember:

  • Checking in. Handing the staff my insurance card and getting my ID bracelet.
  • Sitting in the chair next to mom.  Just trying to focus on my breathing, nothing more.
  • Walking to the pre-op room and changing into the gown.  I remember the nurse who walked like a turtle (no joke) and as fast as one, too.  Nurse G.  She will come into play later on.
  • Looking at the clock.  It was around 8 AM or so right around this time and the surgery was scheduled for 9.
  • Meeting the anesthesiologist.  I told him to please be mindful of my tongue since during the last surgery I almost bit it off.  (I suppose a 13-hour craniotomy and negligent anesthesiologist will do that to you.  Ah, the risks of surgery.)  It was very important to me to express my concerns and feelings to this anesthesiologist.  He was kind.  He was attentive.  He listened.  I am grateful to him.
  • Nurse G not able to find a vein in my arm.  She checked my wrist, my arm, my upper arm, all over.  Cue nerves.  She began to make some smart-alecky remarks to me, but in her defense I can see now that she was trying to distract me.  But, let’s be real.  She sucked at it.
  • Leaving pre-op (Mom got to come too) and going to the room where you are really prepped for surgery.  Nurse G is there.  Anesthesiologist.  Mom is sitting to the side of me.  Another nurse comes into my curtained area.  Then, another.  Both of my arms were stretched out to my side and medical personnel are scrutinizing my veins.  Like, crazy.
  • Cue the panic.
  • Nurse G said, “I am about to slap you” (if you don’t calm down, relax, something.)  I don’t remember the rest of her sentence, only that she told me “I am about to slap you.”  This is minutes before surgery.  Who does that?  Why type of human being tells a patient this before they are having major surgery?
  • Someone finally found a vein.  I don’t remember who.  I remember feeling relief.  I said, “I love you” to Mom.  The nurses wheeled me into the actual operating room.  I was wide-awake to remember all of this.  Yuck.  Maybe you do stress/panic/medical stuff better than I do.  But, I really didn’t need to be coherent being wheeled into that room.  And, in hindsight (NOTE:  If my veins had cooperated), I wouldn’t have been as coherent as I was.
  • Seeing Dr. K at some point during this cray-cray.  I remember asking him if he had gotten a good night sleep the night before.  That was very important to me that he had slept well.  🙂
  • The anesthesiologist said to me, “We need a lot of good oxygen in your lungs” as he put the mask on my face….and then I was out.  But, my last thought was, “Wait.  What?  I don’t have enough oxygen in my lungs?!”  I pondered for months that I wanted my last thought before surgery to be happy and free and light and unicorn and rainbows.  This wasn’t it.

Then, I woke up.

Healing (Photo of the day 12/20/13)

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  1. Today is Day 9 since the hysterectomy.  WOW.
  2. I never knew how wonderful it is to have 15+ staples removed from your abdomen. Pure bliss.
  3. Nephew #2 said a few days ago I walk like a penguin.
  4. Today I walked to the end of the block!
  5. I can breathe into this doo-hickey and get the thing-a-ma-bobber to 1000. Whew. Without even breaking a sweat!
  6. Norco + Ativan = perfection.
  7. I’m not at the “book-reading” stage yet. Hope to be next week. Heck, I need to be at the “room-cleaning stage” PRONTITO!
  8. Found these neat app today called “Jingle Radio.” Check it!
  9. My bedroom has bags of Christmas presents all around.  AND, I haven’t even had a moment to break out my MK bag that I got on Black Friday! (Ladies: those of you in the know, stay tuned!)
  10. I had some amazing nurses in the hospital who really made a positive effect in this surgery experience for me.  I’m going to prepare some gifts for them to show my gratitude as soon as I’m feeling better.  Nurse Z told me during one of my overnights at the hospital, “I’m here to help you.” HOW AMAZING IS THAT?!  Now, I also met a crabby pre-op nurse who said something rude & offensive to me as she’s poking around my arms to find a vein (but I will leave that story for another post.) Very small woman who should not be in the medical field. But I’m going to focus my energy & gratitude on Nurse Z and CNA E. Really incredible people. They were fantastic and I will tell them so ASAP.
  11. I really want a juicer.  One of those Brevell types or something like unto it.  I have been drawn to them for the last few months but don’t know where to start, price wise, etc.  Does anyone have any thoughts?
  12. When I can’t sleep I read blogs.  It’s 12:45 AM.  Why am I still awake?
  13. What is the best way to stop writing in the passive voice?  I cannot tell you how much time I spend editing posts to fix said things and I cannot do it.  HELP!
  14. Watched Home Alone tonight with my family.  That is by far, my favorite Christmas movie, ever.  And, I had to think of one more thing to write about because I could not end on “13″.
  15. EDIT:  The formatting on this post bugged me so much I had to re-do it today (12/21/13).

Two sides in every thing

I will now never know the joys of motherhood; but I will also never know the pain of uterine cancer or passing Cowden’s Syndrome to my child.

I was sobbing in the shower this afternoon as this realization enveloped me. Both sides of this comes with such a heavy price to pay.

My job is to find the peace in this decision I have made.

Onward and Upward

Unfortunately, because of a fibroid about 2cm that the doctor found in my uterus, he was not able to complete the hysterectomy vaginally as was planned, so now have an abdominal incision to deal with post-op. Surgery took 3-4 hours instead of 2, but it’s over and now for the recuperation! Actually, I’m not writing this, my Mom is, — I’m sleeping! Will write more another day……..

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!

On more food for thought

What if I just had a brain tumor?  And not a genetic cancer syndrome

wondering

wondering (Photo credit: zoetnet)

condition too?

At night these thoughts enter my mind quite obtrusively.

I wonder – would I act different?  Feel different?  What would my life be like?  Would the brain tumor be the only thing I thought about?  Compared to worrying about my spleen, kidneys, liver, ovaries & uterus (until 12/11), my Dairy Queens, etc.?

Of course I’ll never know.  I will never know my life without either of these.  I struggle to remember my life before them, too.

Big step

HAH, Freudian slip here?  I just typed “Big stop”.

I just hung up the telephone with the OB-GYN’s office and left a message for the nurse to call me back.  I realized that the decision about when to have the hysterectomy isn’t going to get any easier, go away, or be miraculously made on its own. This is my decision.  My timing.  My choice.  (Note:  Unless I wait too long and my mutated genes decide to make the decision for me.)  But this fact remains unchanged:  I have a 1 in 2 chance of passing Cowden’s Syndrome (PTEN Hamartoma Syndrome) to my child.  Knowing what I know now…I cannot and will not play those odds.  Never mind my age (41) is working against me as well.

I guess I am really lucky though to be diagnosed a few years ago because if I were younger (30ish) and had a prospect for marriage, etc. it would be super-difficult for me to go ahead with the hysterectomy.  Now, don’t get me wrong, it’s very hard anyway.  But, if I were 15 years younger, I might have played the odds.  All I have ever wanted was to be a mother and have a child.  Going forward with this is so final.  Scary.  It just dawned on me I am thankful that I know about CS at this age because the decision is a bit easier for me, if that makes any sense.

Choices

Choices (Photo credit: Sky Noir)

My hope is that since the ball is rolling forward I will be able to process this monumental step over the next few months.  The loss, the fear, the questions, ANOTHER SURGERY. AGAIN.  I think that is the main reason I have put this off for as long as I have; I am not looking forward to another surgery and the risk of complications.  Two brain surgeries in my lifetime was 2 too many.  Apparently I don’t play the odds so well.