On my way

  • I’m on my way to the next P.T. appointment this morning.  Little bit of apprehension.
  • Went to another FORCE meeting this weekend.  Sigh.  I can’t believe I’m considering another surgery, but I really am.  Today I think I can handle surveillance every 6 months for the rest of my life, but tomorrow I will remember these women who have had prophylactic bilateral mastecomies and who look AMAZING.  Strong, powerful, stunning, women and wonder if I can be one of them too?
  • I’ve been on a small dose of estrogen for several months since the hysterectomy and it has helped wonders with the hot flashes and insomnia.  Well.  About a week or so ago (maybe 2, I don’t know) I started getting break through hot flashes.  (I thought that I could handle those, I’d look for some homeopathic treatment and be OK.  Because, we don’t know if me being on estrogen is going to end up biting me in the bumm at some point in the future, anyway.)  But, add in the insomnia too?  No.  Just no.  That makes me so angry!  I get really crabby when I don’t sleep.  And, call me crabby today because I didn’t sleep for beans last night.  So, the oncologist said I could increase the estrogen a small amount and see if that makes any difference.  So far?  None.  Patience, I have none.  I have no time for my body to decide if it’s going to make nice with the estrogen.  I just need it done!
  • I’m still volunteering at a local animal shelter.  Here is my lovey and I want so much to adopt her.  Her owner died and they brought her to a shelter.  She is skin and bones and was so depressed when I first met her.  At least now she is greeting me when I visit and will eat treats from my hand.  I pray she gets her furever home!

    Kayla

    Kayla

 

Because words

You know how words have power, right?  Words such as, “You didn’t win the contest”, or “You’re going to be a father!” can turn a world upside down.  Just as “You’re doing great!  You’re fantastic!” can send someone over the moon.  Words are so powerful and hold so much meaning.  Tone of voice, the written word, all of it.  So powerful.  I am humbled by it all, really.

Since diagnosis I have had a lot of words in my head, and continue to write on this blog to honor my truth and voice.  I have no other outlet, really, so this blog it is.  I’m not complaining, just stating a fact.  But yesterday, something happened and this blog didn’t carry me as far as I would have hoped.

I had a brain MRI the end of March and just received the Final Report the day before yesterday.  I scanned it as best I could, saw the words, “stable” several times, so felt as good as can be expected.  Stable is amazing.  Eventually, these brain tumors are going to grow and I have to be ready for that day.  I don’t know if I am really ready (probably not), and I fear that I will come unhinged when I am told there is growth.  Anyway, I digress…

I find interesting that I didn’t even catch these words when I read them; Mom read them out loud and I was turned into a pretzel because of them. Words, people.  Remember how I mentioned in the beginning that words are powerful?

Stable postsurgical changes are noted in the left cerebellar hemisphere with volume loss.

Volume loss.  I’ve never read or heard words like that about my brain.  All day I could tell my anxiety was rising.  Volume loss.  Part of my brain is gone.  Granted, it’s the diseased part, but still.  I came unhinged.  Left work early.  Caused such a hitch in my day.  I couldn’t stop thinking about the space in my brain.  All because of those 2 stupid words:  Volume loss.

Volume is the quantity of three-dimensional space enclosed by some closed boundary

Loss failure to keep or to continue to have something

Even now as I write this, and really do my best to process my feelings, I’m stuck.  Stuck stuck stuck.  Do you want me to just “Let it Go”?  Oh, sure.  Well, if it was that easy I would have done it yearssssssss ago.  🙂  I’m not going to will-away these feelings.  You know why?  Because it sucks.  And, I’m going to say it sucks rocks.  Yes, I know the power of positive thinking, and yes I just began to meditate again with a positive mantra, but this is exhausting.  Being positive all the time is exhausting.  Part of my brain is gone, and I’m sad.  I’m mad.  I’m scared.  I’m alone.  I’m worried.  I’m panicked about not having money.  I’m terrified for my future.  I’m worried how my balance is progressing so badly.  All these things I worry about on a moment to moment basis and I’m constantly putting on a face trying to be positive?  It sucks and I’m tired.  I want my brain back.  I know that I have to let go of what was, and focus on what is.  But you know what?  What is kinda sucks right now.  Can you blame me for wanting things to go back as they once were?

I get life doesn’t work that way.  Life is about progressing (hopefully) and moving forward.  I know all of this.  It’s just that every once in a while something happens, or I hear something, that sends me over the edge.  Doesn’t help that I have been so depressed lately.  I still wish I knew what that was all about.  I’m exercising 2-4 times a week, working on mindfulness when I’m eating, still in therapy, and really focusing more on this blog where I write all this junk out.  Because, that’s what most of this stuff is.  It’s just junk.  It’s not doing me any good to hold on to all this fear and crap.  But, I can’t help how I feel.  And, imagine if I make the decision for the prophylactic bilateral mastectomy, then what?  I have had 2 brain surgeries, a hysterectomy, 2 thyroidectomies, what else of my body do I have to give to Cowden Syndrome and Lhermitte-duclos Disease before I can have peace of mind?

 

 

6 month cycle

So here’s the thing:

Until, or if, or when…whatever, I choose to have a prophylactic bilateral mastectomy, I am in a 6 month cycle.  Between breast MRI‘s and mammogramsIt just is.  This is just my life now.  No getting out of it, because face it, I can’t.  I don’t want to (not have the tests).  There’s no other option for me at this time.  This is just what I have to do.

And tomorrow is my 3rd mammogram (I think).  Isn’t it funny how I can’t remember things now so clearly?  I’m pretty sure that it is.

2011: First mammo.  Smooth sailing.  This test was right after diagnosis so I didn’t have a clue about anything.  I knew there was a breast cancer risk, but I had no idea how high.

2012:  Meet the woman, she takes some pics of my Dairy Queens.  I tell her I have Cowden’s SyndromeNOT BREAST CANCER, because some Yahoo at the clinic wrote on my paperwork BREAST CANCER history.  So said technician is freaking out trying to find my films, history, etc.  I tell her…NONO.  I have Cowden’s Syndrome.  Her first reaction, “What’s that?”  Then she said, “Oh. I think I know someone else who has that.”

WHUUUUUUUUUUUUUUUUUT?!

I gave her my card with my blog (I think) but you know how that goes.

Then, there was something odd in my pics.  Don’t leave the hospital.  Someone is at lunch and they need more pics.  We need to get a breast ultrasound today.

(Ugh, I’m remembering the fear behind all this and it’s flooding back as I’m writing.)

Blah, blah, blah, blah….ultrasound, go see your oncologist, etc.

“Dilated ducts”.  Which I’m still not 100% clear what that means, but whatever.  My doctors seemed to not be worried.  Pssssssh.

2013:  Tomorrow.  I’ll be honest with you.  I’m a tad nervous.  Focusing on “living where my feet are” and NOT in tomorrow.  But it’s hard, I won’t lie. 

Stay tuned.

Plastic surgeon on my mind

Now it seems like I need to see the plastic surgeon again.  I already saw him months ago, petrified and so unsure of what’s going on around me.

With all this hoo-ha in the news about Angelina, etc. I feel like I need to see Dr. what’s-his-name again (I really don’t remember his name and I can’t freaking believe I’m thinking about ANOTHER surgery.  The kicker is that this is a “risk-reducing surgery”.  Dang.  Are you kidding me?  “Risk-reducing”?  I already have to get rid of my uterus, and then this?!)

I know I need to ask for pictures of his reconstruction work, for sure.  I just can’t wrap my brain around what will happen when I’m 55 ish and no longer “need” breast MRI‘s.  I can’t get a straight answer from the oncologist, well, maybe she doesn’t know.  Maybe things (in medicine and rare diseases) will have changed and there will be more advancements.  High-risk is high-risk.  There’s no getting around that.  So what do I do?  “Wait” to see?  Be proactive now?  85% chance of breast cancer is pretty heavy.

But one of the many things that sucks about Cowden’s Syndrome is that NO ONE KNOWS.  The oncologist doesn’t KNOW.  She’s a cancer doctor.  Not a rare disease doctor.  She only wants to talk cancer stuff, which I DO NOT HAVE!  (But YAY though!  But that doesn’t help me out when I have questions.)

And I have a lot of them.

New gym gear

One of the great things about owning a blog is that I have my place to vent. To scream, yell, cry, or anything else that I need to do. This is my place. And it has been so healing to come here as often as I need to.

This morning didn’t start well. Tough appointment and tough things on my mind as of late: polyuria, weight gain, mastectomies, fatty livers, high cholesterol, no job, running out of money, just to scratch the surface.

I try to stay busy.  I also write.

And I go to the gym. I need to keep busting my tail HARD because if I have to go back on the medication I’m going to be in quite a little pickle.

Tonight I felt stronger and more empowered wearing my shirt. 🙂

20130517-202834.jpg

THIS!

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…

What would you do?

Confused

Confused (Photo credit: Digiart2001 | jason.kuffer)

No.

I mean really.

What would you do?

I saw the surgical oncologist yesterday about the prophylactic bilateral mastectomy.

Remember that thing?

That thing that’s in the back of my mind in addition to the brain tumors?

The lifetime risk at 85% of breast cancer?

Oh yeah.

That thing.

I don’t know.

I’m confused.

I’m scared.

I am feeling overwhelmed.

I don’t want to wait “too long” and wish I’d have made the other decision.

Dr. F is ready to go.  I’m not quite there yet.

Do I dare do the “wait and see” approach?  Does that work in Cowden’s Syndrome?  You see, PTEN mutations causes people to grow things.  Looking back, makes so much sense about why my tonsils were the size of walnuts and why my thyroid was so grossly large.

(I’m doing some things within my power to try to stay on top of that, the overgrowth part) – however, what in life has any guarantees?

Zero

Zero (Photo credit: chrisinplymouth)

“Hey! I know you. I read your blog!”

I can’t believe anyone would ever say those words to me.

And yet today, someone did.

This wasn’t a person that I know in “real life”, a friend or family member.

This was a stranger.  (Come to find out we have a mutual friend and attend the same church.)

How cool is this?

I attended my first Force meeting yesterday and while my head is still reeling from the information I received, I am so thankful I attended.  I went.  I sat.  I listened.

This is why I wanted to go, and will still go.  I’m not sure yet my decision about the prophylactic bilateral mastectomy.  I just don’t know.

But hearing these incredible women share their stories gave me strength.  Gave me hope.  Caused me a bit of confusion because I thought to myself, “Self?  Look at these beautiful women.  Look at these women who just ‘had boob jobs’.  They did this and have come through the other side with flying colors.  You can do this too.”

I’m not going to write too many more details about the meeting because I feel I need to honor the women there but there was one woman who I was just so struck by.  She shared some very personal things with me about her life journey and she was beaming.  Just beaming.  Her countenance was glowing and she struck me in a way I haven’t felt in a long time.  I left the meeting feeling good, partly because of her.

This is why I went to the Force meeting.  So that maybe on some small level I can feel forceful in this new road I find myself on with Cowden’s Syndrome and Lhermitte-duclos disease.

Don’t talk about my boobs unless you’ve walked in my shoes

Don’t talk about my boobs unless you’ve walked in my shoes.

THIS.

As most of you know I’m struggling with the decision about when/if having a prophylactic bilateral mastectomy.  It’s especially on my mind since last June when I had the suspicious mammogram and all the drama that ensued and then getting diagnosed with “dilated ducts” (which is supposedly normal but still has never sat right with me).

The above post was written by one of my first Cowden’s Syndrome contacts – and while she doesn’t have Lhermitte-duclos disease – she has had the hysterectomy and PBM, both surgeries right on the horizon for me.

She’s a fantastic writer and leaves it all on the table with Cowden’s Syndrome.  In the past when I’ve had a particularly rough day enduring my CS road – usually she’ll comment and say just what I need to hear.

Her post above is outstanding.  I’m not sure what your feelings are about women and prophylactic bilateral mastecomies…and to be honest, I’m not even sure today what MY feelings are for my decision.  I just know that this needs to be said.  Today.

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.