Daily Prompt [Catapult]

So Wikipedia tells me that catapult means: to launch a projectile a great distance without the aid of an explosive device.  Hmmm.

My first thought was about all the Mythbuster episodes I’ve watched in the past and I wonder how many episodes had a catapult in it?

My next thought is:  Someone put me in one of these and catapult me to the moon.  I am done.

Please pray for me.

I am shocked with the judge’s decision.  I am shocked that living with 2 brain tumors and a rare hereditary cancer syndrome doesn’t call for any compassion, support, understanding, anything.  

The “advocate” told me yesterday that in reading the judge’s 23 page report of my denial, I told one of my doctors in January 2014 I was having hot flashes but wanted to work.  (I had a hysterectomy the month earlier.  I had to endure forced surgical menopause.  Of course I had hot flashes!  Plus, my brain was a hell of a lot different in 2014 than it is today.  It was better then.  Things were better then.)

So our trusted government servant made his decision (partly) on what I said over 3 years ago.

I guess I’ve learned to never tell my doctor anything.

 

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Sunday morning

For the record, this insomnia I’m dealing with is killing me.  It is so rough and I know this sleep deprivation is beginning to take a huge toll on me.  The burden I am now forced to carry is very heavy.

Today, I am a human being struggling to manage some wicked symptoms.  No positivity.  No happy thoughts.  Just utter frustration that my life is now all of this.

 

Because Cowden Syndrome means surgeries, apparently

Is there ever going to be a time in my life where surgery isn’t up for discussion?

I really don’t know what to do.  I have had most of the “main” surgeries associated with Cowden Syndrome (thyroidectomy and hysterectomy).  But, there’s another one:  double mastectomy.

If you were high-risk for breast cancer and were told there’s no “if” but “when” you will get it…what would you do?
What could you do?  The data “says” that I have an 85% lifetime risk to get breast cancer.

Yep; you read that right.

It’s on the table again.  It’s on my mind again; however, was it ever off my mind?

Not really.

I think I have (had?) convinced myself that every 6 months for the next 10 years (ish) of my life I would (could?) worry about my Dairy Queens?  Breathe a labored sigh of relief after every “normal” mammogram, but still hearing “dilated ducts” and wondering what the eff that means?  Alternating between a mammogram and another sort of test (ultrasound, MRI), and don’t forget the clinical breast exam kickers.

I can’t.

I can’t do this.

But, I can’t keep doing this either.

How do I make this monumental life decision alone?  How do I prepare for any and all mental ramifications if/when I decide to do this “next” surgery?

Sleep > Writing a blog post at almost midnight

What in the world am I doing up this late?

Oh, yeah.  My anxiety is flaring.  Big time.

But I had a good day today.  It started out well.  I guess.

During the 2nd hour of church I worked on some Family History.  I have such a strong calling to search after my ancestors, and there is one line in my family where I am completely stuck.  At a wall.  Either this man saw a murder or he committed a murder and changed his last name in the process.  Pretty crazy stuff.  But I am committed to figure out, somehow, what happened and to find the rest of my ancestors.

I taught the Relief Society lesson today also.  It went very well.  The Spirit was so strong, and the sisters were responsive and it was just a great discussion.  I am so lucky.

But.  Here comes the gnarly part:  I can’t deny that my brain is changing.  And I don’t know what to do with this.  My brain is changing and other things are changing too and it’s scaring the crap out of me.  I am so saddled with grief that my only option is to take more medication to help manage my symptoms.  Who knows how these symptoms will progress is another thing that scares the holy crap out of me, too.

I guess I should be glad I had a good 3 years – and now I feel it’s all going downhill from here.  I’m so scared. What do I do about my brain changing and my body changing? This dizzy crap that makes me feel like I’m going to fall over? And then what if I can’t drive anymore?  It’s weird that these symptoms seemed to have come up from no where, if that makes sense.  I have so much anxiety in my heart yet as I sit here to write it all out I’m blocked.  I cannot seem to get it from my head to my fingers.  I don’t know how to process these emotions of what’s going on inside of me.  You know, my biggest fear (when I had the first surgery) was that when I woke up I was going to be different.  And, by the grace of Heavenly Father I wasn’t.  Yet, the brain is such an amazing thing I think I had no idea how magnificent it really is.  So, as I sit here typing, I’m wondering, “What can I do to take care of my brain better?”  Well, duh.  Sleep would be job #1. But what else?  I know there are tons of things out there about classical music and our brains – and I do listen to classical music quite often.  I should really research this and look into this more…I’m afraid that my brain, or at least my cerebellum, is tired.  Wouldn’t you be, too, after a freaking 13-hour long surgery?! I need to really take good care of it.

This seems like a dream.  This doesn’t seem real.  Like, I don’t, or can’t, believe that I am the person who has 2 brain tumors, who had a hysterectomy, and will never be a mother, because of these 2 rare genetic conditions that I just found out about only 3 years ago.  I guess looking at it that way, I’m only a toddler on this Rare Disease Road.  And, toddlers need a lot of love and support.  For the record, I want off the effing road, but I know that can’t happen.

So with all this being written, I am going to go to bed.  Turn on my iPod and listen to the Mormon Tabernacle Choir hymns and just sleep for tonight.  I know I can live in fear or I can live in faith.  These 2 emotions waiver minute by minute I’ve noticed.  So, when I tip over into fear, I need to do something quickly to get back in faith. That’s why I jumped on here and wrote for a few minutes so I can clear my head.  And to remember the great things about today.

(Nephew #2 had me draw a name out of a plastic baggie because we are doing “Secret Santa” and it ended up that I drew my name!) 🙂  But, we fixed it after all.

Good night.

 

 

 

Estrogenless

Do you know much about estrogen?  I sure don’t.  I kind of had a crash course last December before/during/after the hysterectomy, but if you asked me to give you the dictionary-definition of it, I’m out.

Anyway.  My oncologist doesn’t want me to be on hormone replacement (I had total hysterectomy last year) because of the breast cancer risk, and since there’s “not enough data” on Cowden Syndrome, it’s hard to know anything about anything when it comes to Cowden Syndrome (not to mention Lhermitte-duclos Disease, but that’s for another post).  So, most doctors on my team support me doing life now COLD TURKEY.  No estrogen, no nothing, just to be safe.  And, for these last months, I was on that train too.  The train to, “No-hormone-replacement-for-Heather-because-we-don’t-want-to-risk-her-getting-breast-cancer-and-let’s-just-see-how-she-does-life Town”

While the hot flashes and insomnia have been paralyzing at times, I started taking Melatonin, Zinc, and Magnesium before bed which has helped me sleep through the nights and not wake up from a hot flash.  The insomnia does get pretty gnarly still at times, but I guess overall I am managing.

Except.

These last several months I have exercised (Yoga, Zumba, etc.) the last 2-4 days pretty religiously.  And, while I may have written in the past about my expectations of weight loss/my body changing, I have worked on letting those expectations go (I am a work in progress, daily).  And, I know I am gaining muscle.  I can hold certain Yoga poses now, and just today in class, I didn’t feel like I was going to die.  Die right in the middle of the floor.  I was tired, let’s be clear, but I didn’t think “Today, in this class, I am going to die from exhaustion.”  like I used to. So, that’s good!

But, while some parts of my body are changing for the good, there are other parts that are changing for the BAD.  Bad, bad, bad, bad, baaaaaaddddddddd.  It has kept me up at night.  What is going on? Shouldn’t I be seeing some other changes?  I started using an app to track my food, exercise, and I just haven’t felt right about something.  I don’t know what.  Things should be changing MORE for the good!

Talked to my chiropractor today about estrogen stuff and the concerns I have about my body changing (I’m 42? I have no thyroid or ovaries? I mean, right there, isn’t that 3 strikes against me?)  I’m not giving up.  I’m not complaining specifically.  I’m concerned.  I know that I don’t like the way my body is changing negatively.  So, I need to do some research.  Because, while “we don’t know” the breast cancer risk with HRT, I am monitored very closely on that front (mammograms, breast MRI’s, clinical breast exams).  I can’t believe that HRT would cause breast cancer for me, especially when I have no family history of it.

But, all those things I just typed are WHAT WE DO NOT KNOW.  All the freaking unknowns that Cowden Syndrome shoves in my face on a silver platter.

All the while, laughing maniacally at me as I type this in the midst of the worst hot flash ever.  I am ready to try something different.  If I live to be 95 years old I cannot endure much more of this.  And, for the record, whatever you have heard about hot flashes is A LIE.  A BIG FREAKING FAT HUGE LIE.  Until you have lived and breathed this – you have nooooooooooooooooooooooooooo idea.

 

PS.  Anyone want to get me one of these for an early Christmas present?  🙂

 

Doing it different, if only for today

I write to understand myself better.  I write to understand Cowden’s Syndrome, and Lhermitte-duclos Disease better.  Some, if not most of it, isn’t pretty.  I don’t want to censor myself here.  On my blog.  The place that I have to be me and can be open and honest about everything that is in my heart.  I use this blog as a journal so that I can look back on things to see growth and change (for the better, is always my goal).

With that all being said, I’m not sure how to write about this while keeping things “clean”.  Ahem.  There have been about 4-5 times since the hysterectomy (December 2013) where I have found “stuff” that shouldn’t be found.  (I am sure you can infer where I am going with this.)  While it concerned me and unnerved me for a bit, I was so shocked that I wasn’t sure I could believe what I was seeing.  But since it has happened only a handful of times in the last 7 months I knew it wasn’t a dire situation.  So I let it be.

It happened again this morning.  My first thought and instinct was, ” THE BAD PLACE.  MUST GO THERE NOW!”  But, I came back from there very quickly.  Much to my happiness (and shock, actually).  I reminded myself that I could count on one hand how many times this issue had occurred since December.  Took some deep breaths.  Knew (and felt) it was time to call the doctor; I couldn’t ignore this any longer.  But, more than that.  I didn’t want to ignore this any longer.  I was ready to take the steps to look into this further.  I think that Cowden’s Syndrome; and Lhermitte-duclos Disease has made me very gun-shy when it comes to things going “wrong” with my body.  I don’t know if I was ignoring this, technically, but I guess I was self-preserving?  Hoping/thinking/wishing/feeling/wanting it to eventually stop that I didn’t need to jump to the doctor as I usually do.  This is very interesting to me as I’m writing this.  One of the biggest anxiety factors for me presently that I am working on is I don’t want to “miss” anything in my body and get blindsided again with another 5 cm tumor in my cerebellum (or elsewhere).  That makes me always on guard because I have to be ready.  I will do anything and everything to catch another brain tumor.  But, yet with this issue post-hysterectomy, I was content to wait it out a bit to see if it worked itself out.  I think that’s growth.

Made some calls and I have an appointment scheduled in a few weeks.  “Scar tissue; nothing to be overly concerned about; we will take care of this for you, doesn’t happen all the time but sometimes it does,”

I am still breathing.  It is OK today.

Guest Post – Meet Debbie

I have wanted to do Guest Posts here for quite a while.  And, with the blessing of Twitter (yes!) I have connected with a few people also living with Cowden’s Syndrome.  I asked Debbie if she was interested in sharing her story and she graciously agreed.  Please meet Debbie!

*

Greetings, Everyone! Heather asked me to write my story and this is where I freeze! So I’m looking inward to see who I am and compare it to my outward appearance of who I want you all to see. If you’ve never read about the Spoon Theory, please do so. I am a spoonie, still with a type-A personality; an extrovert; a leader; all personalities that really came out after high school. And so as I juggle to keep all my balls in the air, I am stealing spoons from anywhere I can get my hands on them. I am a spoon thief, but you can call me Debbie.

Two years ago, at age 47, I discovered that I had Cowden’s Syndrome through genetic testing and with help from a geneticist. Immediately prior to receiving my genetic test results, I had ¾ of my colon or large intestine removed. This partial collectomy was done upon my gastroenterologist’s advice that since I had hundreds of recurring polyps each year, a partial collectomy would lessen the real estate that the polyps could grow on. I saw the logic behind that and I felt that I could live “normally” with 1 foot of colon. And I have – my “normal” has changed a bit. My favorite foods are still within reach!

With the genetic test results that said I had a PTEN mutation and Cowden’s, I was relieved. Between 2005 and 2010, I had four operations and was seriously thinking that I was a mess! (By the way, I have all my operations, dates, doctor’s names on notes that I keep with me all the time. I could never remember all these details!)

2012 – partial collectomy
2010 – oophorectomy (2 softball-sized cysts, one on each ovary)
2007-hysterectomy (fibroids similar to being 14-weeks pregnant)
2006- carpel tunnel, left hand (with fluid-filled cysts throughout my arm)
2005- total thyroidectomy (multinodular goiter, grapefruit-sized & follicular
cancer, with damaged parathyroids thrown in)
2002- carpel tunnel, right hand (with some cysts)
1972- tonsillectomy

I so totally believe in better living through science, but people really look at me strangely when I am in a restaurant for breakfast. Over the course of a day, I take some 20 pills to create this fine, delicate balance that is my body. What I take? That could be a whole other article!

I do balance my check ups and my primary doctor loves the challenge that I am to her. She helps me keep everything organized. My gastroenterologist has seen me every year for the past 14 years, patiently clipping all my polyps and patiently suggesting I ought to have genetic testing. I was in no hurry for genetic testing – I had no children. One of my new thyroid doctors did a very thorough check up so that electronic records could be created and then told me that her professor told her she would NEVER meet someone with Cowden’s Syndrome – it’s that rare. She was extremely anxious to tell him that she found someone with Cowden’s. She had me pegged even before the test results were back. Good job, Doctor!

So I think back to high school marching band when the band mothers were fitting us for uniforms and hats and when I finally had a hat that fit, the band mother said, “my, you have a large head.” Another a-ha moment from 30+ years ago.

I risk this is getting too lengthy so I will have to promise Heather that I will chime back in soon on the rest of my story. I am not Cowden’s. I am a wife, doggie-mommy of a high maintenance sheltie with cancer, daughter, daughter-in-law of a mother with dementia, and a librarian with a full-time job with wonderful benefits. But it all returns to me wanting to be “normal” and being able to do all those things that I want to do.

Social media and the internet has been a blessing to us rare souls! I’d love to talk to you! Follow me, @debbierzep, on Twitter and say hello!

First and foremost

I’m very excited to share this, you guys!  Please visit the link and just remember that writing is not one of my strong suits.   🙂

I forgot to connect Lhermitte-duclos Disease to Cowden’s Syndrome (duh!) and I forgot to mention the prophylactic hysterectomy I had December 2013.  But, it’s all good.  The point is that Rare Disease (genetic mutation) stuff is getting out there.  Doesn’t matter by whom or when, the most important thing (to me) is that it’s OUT THERE!

The Change

I thought about some funny titles for this post, “The Change of Life” or some such things.  Today being Mother’s Day and all.

I was pondering last night how this is my First Mother’s Day with the PERMANENT AND NOT EVER CHANGING FACT that I will never be a mother.  Now, you can add the terms “biological”, “or there are other ways to be a mother” and of course I TOTALLY GET THAT.  But, this post (and my blog) isn’t to be rational, er, kinda.  🙂

It’s to write and be honest and raw.  To be who I am whole-heartedly.  To own that.  To embrace me and all that I am.

I’m never going to be a mother. I’m never going to have the miracle of life growing inside me.  I will never able to look at another human being and know that I created that with a husband.  Gone. Done.  Not happening.  Off the table.  5 months ago today I made the decision to have a hysterectomy.  I have had huge things on my mind since the Lhermitte-duclos Disease and Cowden’s Syndrome diagnosis (colonoscopies, breast cancer, etc.) but “uterine cancer risk” was like a small gnat buzzing around my head. I couldn’t shake it!  I knew I had to decide soon…but, I still hung on.  It still took me a LONG time (most of 2012) to finally say with all assurance and the strength I could muster, “NOT GETTING UTERINE CANCER TRUMPS NOT HAVING CHILDREN.”  Saying it, I get it.  But feeling it?  It’s a different story.

I’m sad.  But, relieved?  My soul hurts; but I’m feeling empowered knowing that I took a stand against Cowden’s Syndrome, at least for a small part, and faced the cancer risk

straight on and said, “Keep on moving.  You’re not staying here.”

PS:  Hot flashes are the devil on earth and I pray for relief from them.  One day.  Sigh.

I need this!

PPS:  Happy Mother’s Day Mom!

 

The name game

Last night I went to the hospital to drop off a [late] Christmas gift to one of the night nurses who cared for me during my hysterectomy stay. Nurse Z was really incredible, and just telling me, “I’m here to help you.” made such a difference in my psyche and healing.  Really.  I hope I never forget her. 🙂  I wanted to give her a small token of my appreciation.

As I walked in the front door I gave my name to the receptionist and as she wrote up my Visitor Badge she asked for my last name.  After I told it to her she said, “Oh yeah. I’ve seen your name around.”

Urg.

I think this means you go to the hospital too much if a random staff person knows you by name!