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!

Taking Stock, Christmas Eve 2013

I borrowed this idea from here and I thought it’d be a nice Christmas Eve post. I am surprised at how difficult it is for me to think of some answers. Must mean I should do this more often.

Making : Not much. I usually stay out of the kitchen at mealtimes. 🙂
Cooking : See above.
Drinking : Water. Tons.
Reading: Different 12-step books; Book of Mormon; Eva Moves the Furniture (Can’t really get into this but I’m trying!); a book by Geneen Roth.
Wanting: To get some use of my new Michael Kors bag I got on Black Friday this year. I’m so excited yet I haven’t been out yet to really use it so it’s still in the Macy’s bag.
Looking: At a very messy computer desk.
Playing: Not enough playing in my life. Need to do some.
Deciding: That since surgery is complete, what is my next thing to focus my attention on?
Wishing: For the ability to always focus my attention on the positive things in my life.
Enjoying: Pure Peppermint Ice Blended drinks from CBTL. (NOTE: Do not get them from Starbucks. Gross!)
Waiting: For Mr. Right. (HAH! )
Liking: Anything colored green.
Wondering: Why Tiggerwigger and Konacoffee don’t play with the toys we buy them?!
Loving: The Santa Clause movies marathoning on TV. 🙂 And, my red and white checkered throw I bought at Target a few Black Fridays ago.
Pondering: Where I will be in 12 months time.
Considering: The great courage I showed by having the hysterectomy. I’m now a PREVIVOR!
Watching: Days of Our Lives. Like always.
Hoping: For a great 2014.
Marveling: At the fact that it’s 84 degrees in December.
Needing: A pedicure. This girl deserves some pampering!
Smelling: Christmas dinner cooking!
Wearing: Old Utah t-shirt and sweats from Target.
Following: Too many accounts on Twitter.
Noticing: That the pain in my abdomen is decreasing!
Knowing: That as time passes the pain will be less and less.
Thinking: I need to read more. And do The Twitter less. 🙂
Feeling: Overwhelmed. (A bit bummed that I didn’t have the hysterectomy during the summer because this Christmas season has blurred past me.)
Admiring: Those who figure out (and are successful) the magic bullet of diet and exercise to lose weight. Why don’t I get it?!
Buying: My Michael Kors bag.
Getting: Stronger each day. RIGHT?!
Bookmarking: Lots and lots of health blogs.
Opening: A cheddar cheese stick to munch on while waiting for dinner.
Giggling: Anytime I hear my nephews laugh – I giggle. To hear them is the best. sound. EVER.

Angelina on my mind

I have a lot to say about her decision.

And I have a lot to say about how HER choice affects my choice.

As I told someone today, “I’m very uncomfortable.”  And I was a bit so before this news came out.  [Ironically, last week my oncologist asked me where I was on the prophylactic bilateral mastectomy.  I told her I wasn’t “there” yet.]  Now?  I’m much more uncomfortable.

I want everyone to know that BRCA is not the only genetic mutation.

There are others.

I know, because I happen to have one.

It’s called the PTEN gene (Cowden’s Syndrome) and my lifetime breast cancer risk is 85%.

We deserve to have our voice heard, too.

I commend Angelina for this proactive choice.  And while I wish I could talk to her about her thoughts that led her to this point, I sure would LOVE to pick her brain about my situation.

To be continued…

Feeling downtrodden today, but I need your help to get back up!

Feeling downtrodden today, but I need your help to get back up!.

If you have a moment or two – please read the post above and if you’re on Facebook or Twitter become involved.  I’m not BRCA+ but I am high risk for breast cancer.  I just came from a funeral….I shouldn’t have to read something like this.

WE MUST DO SOMETHING!

Thank you.

My Day

I’m not a strong person. And today confirmed that for me.

I’m going to have to have a mastectomy. *WHEN*. Not if.

I always knew this was around me. I’ve read the paperwork, heard around the way “85% lifetime breast cancer risk”.

This is all thanks to Cowden Disease, a rare disease that affects 1/250,000 people.

(NOTE: This rare disease is so rare that it has different names. It’s also known at Cowden’s Syndrome/Cowden’s Disease/or just Cowden’s. I just mixed it up tonight and put into the search engine a different group of words; they all mean the same thing basically.)

I saw the surgical oncologist again this morning. Another Dr. F. (I have 3 Dr. F’s on my team.) She was great. Spent so much time with me. Listened to me cry. Listened to me ask questions, ones that I couldn’t even really articulate. I’m thankful that she’s an oncologist too. She is very down to earth and very personable. I asked her how many PBM’s she’s done…“A lot” she replied. 🙂 She gave me some other numbers about 1 in 8 women will be diagnosed, age increases the risk, etc. etc. I’ve seen her once before but for some reason this morning’s appointment was different. More Real. More Terrifying. More Panic. More Fear. She asked me what scared me the most about this? And, I should have said a couple of things:

The first thing is that I’m scared to wait too long and no longer consider myself a Previvor. That in December when I have the breast MRI my right breast that has acted up and causing me pain is going to have an incidence. THEN WHAT.

The second thing (I did tell her) was that ~ it’s surgery itself that scares me. It hasn’t been long enough since the craniotomies and when I was awaking from the 2nd surgery…the nurses weren’t doing a lot for my pain management. I WAS IN SO MUCH PAIN WAKING UP FROM ANESTHESIA AT THAT SECOND CRANIOTOMY. I don’t know what made it different from the 1st (I vaguely remember mom saying Dr. K. saying something about WHY my pain was so much more)…but I still don’t know why the nurses weren’t able to give me more medicine for my pain last July.

So. What do I do with this information?

I don’t know. I don’t know. I don’t know. I don’t know.

I thought that having brain surgery was enough in these 40 years of my life. But I’m not done. Apparently.

NOW!

This cannot define me. I cannot let it drag me down into this pit of hell and depression. I want it to. Believe me. I want to change into my PJ’s and get into my bed, put on my “Friends” DVD’s and just check out. Really. I mean…I AM THIS CLOSE TO DOING THAT.

But really.

If the one thing brain surgery taught me, besides ANYTHING else, is that “LIFE HAPPENS.” And then it goes on.

I’m just a jumble of things now. Surgery now? Later? When? WHAAAAAAAAAAAAAAAAAT? With the brain tumor I had no time to plan. No time to process anything. What I hope to do here is do my due diligence and then make an informed decision.

That’s my goal. In a perfect world. I’m going to strive for this every moment because what else is there? It’s not going to work all the time and I’m going to struggle. A LOT. You know those friends I’ve mentioned? Here is when the rubber really DOES meet the road. Here’s where I need help. Love. Prayers. Support. Friendship. A, “Hey Heather! Just thinking about you…how are you today?” And here’s where I’ll see the truer colors of many people. People who are “In it to win it” with me…or not. I don’t know how to go about my day and not be consumed with this.

Because…

How do I let these doctors cut off a part of me? (Yes, I would have immediate reconstruction.)

I don’t understand. I don’t understand anything. I had hoped that I’d be married and be a mother at this point in my life. It’s now looking that I’m a brain tumor survivor who must have a mastectomy among other things that Cowden’s Syndrome presents to me. What happened to the life I thought I was going to have? Where did that go? How come I can’t have that life?

So after the appointment this morning I went to the park and walked for a bit. I knew I couldn’t, and didn’t need, to make any decision today. I came home, hugged my mom, took a few deep breaths and did the next best thing. I went to babysit this cute little girl in my ward (who refers to me as “My Heather”) .

We played “Ants in the Pants” and didn’t follow the correct rules – we followed M’s rules. Which is just basically, “My turn.” – then “Heather’s turn.” – with little plastic colored ants flying every which way. 🙂 All this while watching some Dora.

And then there’s tomorrow….

 

Just when I think it’s safe to go back in the water

I can’t forget that it’s General Conference weekend. I leave all the petty internet drama behind and focus on the GOOD STUFF!

Another Jaws attack!

Why do I think that all people with Cowden’s Syndrome are nice?  Or kind?  Or respectful?  Or want to help each other in their health journey?

I decided to give ANOTHER (different) support group a try.

WHY?!

I had another run in with a girl.  A girl I kind of [virtually] “looked up” to at one point because she’s a previvor..  (Well, she slammed that ideal into dust now!) – you think you are trying to share info. with the CS community because it’s actually kind of small, and then you get crapped on.  YET AGAIN.

And what’s so funny is this person blew smoke [in the group] days ago and said she was leaving the group.  She didn’t like that others weren’t giving her what she wanted, or something.  And then plays the “BLAME GAME” that SHE’S getting attacked when she’s spewing venom and nastiness of “poor me” stuff.

I wanted to make sure (months ago on Twitter) that she knew of the risks of colon cancer (because it was newly added).  Granted, I didn’t share it in the BEST way, but I apologized afterwards.  And we went our separate virtual ways.  Then a bit later I saw she was following me again, which was really odd.  But no matter.  I figured she had put it past her because why else would she be following me on Twitter again?  And that was why I decided to start reading her blog again.  Remember also I had looked up to and really admired her for her previvor status.  Not anymore, obvi.  I’m thankful I have some other contacts who are outstanding examples to me of what it means to be a previvor and I can go to them for questions/support/advice/questions, etc.  I’m glad this one vetted herself out REAL QUICK LIKE.

Now, this incident she and I had was MONTHS AGO.  If you can’t move on – then I don’t know what to tell you.  But I will suggest the following:

A), Don’t follow me on Twitter.  And 2).  Delete my comments from your blog.  Eventually I would have noticed they were gone and I too would have moved on. I thought we were all adults here (apparently I was mistaken)….no big.

Then last week or something she posted in one of the Cowden’s Support Groups.  I didn’t get involved directly but I was getting upset with her holier than thou attitude.  It wasn’t directed at me, but I was sticking up for the other person she was attacking.

But during all this I’d still visit her blog.  Because I thought she was incredible for making the choice to be a previvor.

NOW….wait for it.

She posted something on her blog in which I commented asking if she was BRCA+ as well as having CS.  She then came back into the support group (WHY NOT COMMENT BACK ON YOUR BLOG?  HUM?  DRAMA YOU SAY?  YAH.  I DON’T NEED ANYMORE OF THAT) – and went on about her medical history.  OK, that’s fine and dandy.  Then she starts talking about this mean Twitter girl (READ – ME) and that her doctor was speechless for a minute.  BECAUSE I TOLD HER TO MAKE SURE SHE WAS GETTING SCREENED FOR COLON CANCER!  BTW, I wasn’t wrong.  People who have Cowden’s Syndrome are at risk for colon cancer so a colonoscopy is part of the screenings.  Just sayin.

But be an adult for Pete’s sake.  Don’t be a 6th grader and air your dirty laundry with me in the support group in front of everyone else.  Please don’t post this garbage in front of newcomers who might be scared out of their mind with Cowden’s Syndrome and all the unknowns it brings.  Have some class.  Sheesh.  She went on and on about me so passive agressively that I didn’t even read the entire post.  I just laughed out loud when I read it!

I am the mean, mean, Twitter girl!

I’m not perfect. I don’t share things the right way all the time.  CS is scary. And when I find someone else who has CS I’m like, “WAIT!  Maybe you don’t know about X or Y or Z!” – So….

She calls me out in the group….when, wait a moment.  This is now the SECOND time she’s had a run-in with someone.  Things that make you go hmmm.  Maybe it’s not me after all?  Maybe it’s her?!  In fact, it IS her.

This is not support.

[I am not the best person to offer support but I can sure as hell tell you this is not it.  Once is a while a person will find my blog searching “Cowden’s Syndrome support group” and this is what they will know?  Well, I am here to tell you there ARE kind and loving people who have CS.  I have virtually met 2 of them.  Granted, there are more I know.  But I’ve made virtual connections with 2.  And they are amazing people.  So, if you are diagnosed with Cowden’s Syndrome do not give up hope.  Keep looking.  If you look online to the major places where you can find support groups and they don’t work for you, keep looking.  KEEP LOOKING.  That’s what I had to do.  And, if you get bullied or something like that from certain people, block them and move on.  I promise you WILL find support. It might take a while. Or it might not even be VIRTUAL support.  Maybe it will be in another way.  But just DO NOT GIVE UP HOPE and do not give up looking.]

I apologized already for the incident months ago to this person; I was over it but some people hold grudges.  That’s OK.  I know I’m not perfect and in my way of trying to help another person it backfired.  That’s OK too because I know I had only good intentions.

People who have CS aren’t all wine and roses.  So what am I going to do next time?  I don’t know.  Am I going to share anything I’ve learned or read with anyone about anything?  Well.  Granted. I shouldn’t let this fruitcake ruin me or my day because what if the next time I meet someone with CS and they do not know about the new screening guidelines and they can take it to their doctor to share?  I need to change my delivery is all.

I don’t know who to give the credit for this. A friend posted this pic on Facebook and I thought to myself, “WOW! How right it is for what happened a few hours ago.”

I put this, and it all, in God’s Hands now.