Organize thyself

Dear Yetta Francine**:

How are you?  I am sorry it’s taken me so long to write.  I’m not sure what’s going on; as you know, normally I love to write as this is such an outlet.  Nonetheless, I have been blocked in writing.  I know I need to catch you up on so many things, so I am going to do my best here.  Thanks for being patient.  And, above all, thank you for being here for me.  It means more to me that you’ll ever know.

Instagram:  You’ll never guess what happened?  You know how I love Instagram and post pictures about my life with Cowden Syndrome and Lhermitte-duclos Disease? A few months ago someone commented on one of my doctor pictures and she said she has CS too.  After some commenting back and forth, come to find out SHE LIVES 5 TOWNS AWAY FROM ME!  Can you believe that?  If anyone had told me 3 years ago that I would be connecting with ANYONE who has Cowden Syndrome, let alone someone so close, I would have laughed in their face. However, in hindsight, I sure would have appreciated that information back then because it might have done wonders to help ease my anxiety and despair then.  (Granted, the despair has lifted, thankfully.)

Next medical thing:  I am having my next colonoscopy on the 24th.  Did I ever share this with you from a few years ago?  I am glad I wrote that because I will need to check it again before next week.  I can’t believe it’s next week!  I remember the discussion in 2012 about when to have the next one.  That’s the thing about having such a large medical team.  One doctor suggests “X”, while another suggests “Y, Z, and then a.”  Positives and negatives on both.  Anyway, it ended up being 2 years that I needed another one, because while I wasn’t diagnosed with cancer then, I did have 3 polyps, which no one ever wants.  When I saw the GI doctor last month, he didn’t think I needed to have an EGD this time.  That was news to me, as I was expecting to have both procedures just like last time. I told him that I had a polyp in my esophagus (or somewhere, that came up via the EGD) and for my peace of mind I want to know if there are any more this time.  We went round and round, he said he had seen a person with Cowden Syndrome during his residency, blah blah blah, but I didn’t need an EGD.  WHY THE CRAP NOT?!  I started to get angry here.  My voice has value and meaning. When someone doesn’t listen to me, especially when it comes to MY health and MY body, I really get mad.  He wasn’t going to budge so I told him that I would check with Dr. L (oncologist who schedules all my screenings and scans, except for my brain).  I called Dr. L’s office and left a message with one of the assistants and waited for a call back.

Well, that call never came.  Of course.  So, last Monday I called the oncology office.  Spoke with D (I won’t throw her under the bus here) and said why I was calling. Gave her all my info, and was under the impression she would leave a message for the assistant and all was on track.  Right before our call was finished she put me on hold for about 10 seconds, then came back and said, “Oh.  For your this issue you need to talk to your Primary.”

ME:  “Why?”

D:  “Well Dr. L handles your cancer treatments so you need to contact your Primary.”

ME:  “I don’t have cancer.  Dr. L handles all my screenings.  I have a rare disease and Dr. L is very aware of this.”

D:  “Well, I talked to the head nurse and that is what she said.”

ME:   “WHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY.”

D:  “Because you need to talk to your Primary.”

AND SHE REFUSED TO LET ME LEAVE A MESSAGE FOR MY DOCTOR.  The doctor I have seen since 2011.  The oncologist.  I wasn’t able to leave a message for her.  I about lost my marbles.

I called a contact of mine at my Primary’s office and unloaded on her.  I cried and just about lost my noodle.  My friend A is so amazing, so kind, so wonderful (if you read this A – I so appreciate you!) and she said she’d pass the message to my Primary and maybe she and Dr. L would talk (again) and I decided I just need to let this go.  For now.

Tuesday morning my Primary doctor called, she looked in this system and told me that I was scheduled for the EGD.

WHUT?!

My Primary didn’t do anything, she didn’t make any calls, she just read to me what was already in the system.  Urg.  You have GOT to be kidding me.  I know Yetta.  I know this is a big mess and I should have just let it go.  But I couldn’t.  I didn’t.  D and the “Head Nurse” (what a joke) MUST be held accountable for what they did.  Or, at least have me THINK they are being held accountable.  I called the supervisor at the office, and I swear, she sounded about 14 years old.  I told her everything, and she said she’d “Get back to me.”  She did the next day, and said that D was “so sorry that happened and next time I would be allowed to leave a message for the doctor.”  I said, “Well yeah.  I should always have been able to do that.”  And then we went round and round about the “Head Nurse”, C.  She lied to the supervisor, I know flat out she did.  And I told her that.  She wasn’t going to budge either about “procedures or protocol” and she’d have the nurse call me directly to talk about that.  DO YOU KNOW I AM STILL WAITING FOR THAT CALL?!  Then, here’s the kicker: A couple of days later I get a call from a different nurse, the triage nurse. She says she is calling to me to make sure I knew about the EGD and Dr. L wanted to make sure I knew.

ARE YOU EFFING KIDDING ME WITH THIS?

I’m done.  I wish that I could be done with that office, but I cannot.  It is what it is. But this triage nurse was very helpful and I am just going to call her in the future for everything.  So, I am a bit nervous about the procedure.  After all that.  I won’t lie.  And, I suppose that the nervousness (I am only calling it that) won’t ever subside.  It’s just part of my life.

You know Yetta, we are all busy. I am sure you are busy too.  We all have lives.  But, part of why I feel so overwhelmed is that if I drop the ball on something, it’s only me that will be affected and what if it turns to something medically serious?  Does that make sense?  So much responsibility and so much weight on my shoulders, that it’s suffocating.  The physical pain is getting worse too.  Not from the stress, I don’t think, but from the brain tumors affecting my balance.  Have I ever told you about the Spoon Theory?  Please give it a read when you have some time.  It is pretty great and pretty right on.

Juicing:  A friend gave me a juicer a few weeks ago.  I am so thankful and so excited!  I’m sure you have heard of the Gerson Therapy, or Fat, Sick and Nearly Dead.  A different friend juiced for 40 days and lost 23 pounds!  My goal is to juice 1 meal a day, or at least breakfast when I am home.  Every time I do that I put a sticker on my calendar.  :)  If you check my Instagram account you’ll see some pictures of my recent drinks.  My favorite juice is with apple, carrot, and celery.  Once I get going on juicing at least one meal daily, then I will probably start to 2 meals, and so on.  My favorite mantra is “Celery All The Things!”  :)

There’s quite a bit more I want to catch you up on.  I haven’t acclimated very well to “living in the world with Cowden Syndrome and Lhermitte-duclos Disease”, and to the title of this letter (post) I need to make some big organization changes in my personal life.  I’m not sure how to do that so if you have any suggestions, please send them my way.  There’s some more I want to update you on, about my expectations (how I am working on letting those go) and about a comment that someone told me (about 7 years ago) that has triggered some stuff lately.  Also, do you know of a way to manage chronic physical pain?  Anyway, I’ll get to it soon, I promise. It all ties in to chronic diseases and managing them in life.  I suck at it, apparently.

I hope you are doing well.  Please write soon.

Love, Heather

 

 

 

**Yetta Franice was my Cabbage Patch Doll’s name when I was a child.

 

 

Guest Post – Meet Traci

I connected with Traci a while ago on Twitter, and am so excited to read and share her story with you.  Please meet Traci!
*
I visited my dermatologist in August 2013 awaiting the pathology on a skin tumour on my left breast. The tumour’s name I forget but the pathologist said it was indicative of Cowden Syndrome.
What the hell is that???
My derm explained to me about the higher risks of cancers, tumours etc. All I heard was blah, blah, blah.
I had the criteria of Macrocephaly, endometrial cancer, thyroid problems and papillomatosis of both breasts. So the derm made the diagnosis on the spot.
She got pretty excited because I had a rare syndrome. I wasn’t laughing.
So off I went to the geneticist who confirmed through blood work I had it. The geneticist reviewed the percentage risks of the various cancers and then announced your risk of breast cancer is 85% so your breasts need to come off. Whatttt???
What happened to breaking it to me gently. Sheesh!
My head was swimming as I sank into a dark depression. I felt like I had a gun to my head. What kind of life will I have?  How long will I live?  I don’t want to die.
I went for various breast, thyroid, bladder, kidney and colonoscopy testing. I was always at the doctors but I was getting really sick of them.
While all this was going on, I turned to what turned out to be a completely useless support group for Cowden patients and their families with one saving grace – meeting Heather.
Heather was so kind to me and directed me to her blog, HopeforHeather. This courageous young lady took the time to show me that Cowden Syndrome albeit scary is not a death sentence.
She showed this old broad how to navigate Twitter and I soon made more Cowden friends.
Through a lot of hard work on my part I came to terms with my breast cancer risk and will be having my prophylactic bilateral mastectomy with immediate reconstruction this November. This is the most frightening thing I’ve ever done.
How much do I have to sacrifice to live?  Apparently a lot.
I’ve learned a few things along the way. And the biggest thing I’ve learned is that despite what challenges Cowden throws my way, I will stop it dead in it’s tracks. I will live a long and healthy life.
I will survive.
Special thanks to Heather for letting me guest blog.
If you’d like to follow my journey, please follow me on Twitter @cowdensgirl and/or check out my new blog at www.cowdengirl.blogspot.com
Traci aka Cowden Girl xo

Blogging refresher

I have been a slacker lately.  That’s not for lack of needing to write, or for lack of blog topics, for sure.  I don’t actually know why I have struggled getting to my computer.  I do know that I am feeling very overwhelmed lately, more than I remember in quite a while.  Had a brain scan last month, an EKG, and just last week a GI and endocrinology appointment.

Here’s what I need to write about today:

At the appointments last week I was told that I have a vermis (about the brain scan).  My first thought is, “What the hell is a vermis?”  This appointment wasn’t with my neurologist so this doctor was very clear to me that I needed to speak with the neuro.  (Obvi).  Anyway, I did a bit of research on what a vermis is, but couldn’t make sense of it so let it go.  I thought, “Maybe that’s why I am having vertigo and balance problems?  Is vermis scar tissue?  If so, that’d make sense, I think.”  It was just a mess, as always, in my head (no pun intended.  HA)

To be honest, this brain stuff usually trumps EVERY OTHER MEDICAL ISSUE of the day, but I was able to put it aside to focus on other things, and in another post I will write about the Global Genes Rare Patient Advocacy Summit that I attended.

But today I spoke with Dr. D (neurologist) and he said everything “looked fine” and blah blah blah “follow up”, etc.  I do see him and the neurosurgeon in a few months, and we chatted a bit about my balance and gait problems.  Now, these are problems TO ME.  I don’t know if anyone else gives a rip about them, but to ME IT IS A PROBLEM.  And the kicker?  There may not be a DANG THING that anyone can do to help me with it.  It may just be LIFE.  Again.  More life.  More change.  More adjustment.  More coping of NEW stuff that I CANNOT CONTROL OR CHANGE.  All these things happening to me that I can’t help or fix!  And, when I asked him about the vermis he explained that it’s normal anatomy of the cerebellum. It appears that the 2nd brain tumor is on/in/at/located there.

Oh crap.

I forget sometimes that I have another brain tumor, besides the (partial) one that’s still remaining.

2 brain tumors and I can’t get approved for Disability.

I can’t find a job.

I can’t do what I once did.

I have no money.

Now, before you interject here, I know I need to turn this around (I caught it right away, as soon as I started typing “I can’t” and I must write a post with the things I “can do”.)

But not today.  Not now.  Not tomorrow.  Just a word:

 

 

Heart

This isn’t a post about awareness or advocacy.  This isn’t a post about getting 8+ hours of sleep.  This post is about processing everything for me.  I don’t have a friend I can call to share my feelings.  Now, I don’t say that for pity, it’s just reality and to be honest, I don’t really trust many people since my surgery.  So, ironically, I choose to vent in this “safe” place, instead.  (That sentence probably wins the Internet.)  :)

It’s almost midnight but I can’t sleep.  While I vaguely alluded to this on my Facebook page a few days ago there’s more.  There’s more within me.  And it’s coming out with a vengeance tonight.  Fear.  Worry.  Doubt.  Of course, if you’ve read my blog lately you know that I struggle quite often with these emotions, and that’s why I love Yoga so much because Yoga gives me a bit of strength to look Fear in the face and say “Eff off.”  (Doesn’t work perfectly, but kinda.)

Friday I was at the mall and I got a phone call from my primary doctor (Dr. B).  She was telling me about the results from the EKG I had a few weeks ago.  Now, I know I had to have had EKG’s in the past before other surgeries, and in fact I knew I had one before the first brain surgery (and come to find out I had one the day after the surgery too) but I do not recall any doctor ever going through the results with me.  Why?  Because there wasn’t much to talk about?  Or because we had bigger fish to fry (i.e. brain surgery)?  I don’t know.  But, over the last few months I have felt a prompting to ask to have my heart checked, at least again.

I’m in the dressing room, sitting down, trying to hear her as other women are YELLING in their cell phones, while I wanted to scream out, “Can you please all SHUT UP?  My doctor is on the phone and I need to hear her!”  Of course, that didn’t happen, but I sure wanted it to.  Dr. B asked if she should call me back, and my gut said, “No.  She called you Friday at 4:50 PM.  You talk to her now.”

Dr. B:  “Blah blah blah blah blah mild M.I.”

Me:  “Uh huh.”

Dr. B:  “Now are you mildly to moderately concerned or are you freaking out?”

Me:  “I’m trying to stay calm and understand what you’re saying but I’m moderately concerned.”

Of course, Dr. B never says “Blah” to me (although maybe she does in her head when she’s listening to me?) but all I could understand was “Mild M.I.”  The other words she said just made absolute 0 sense to me.  Even when I asked a few questions I still didn’t get it.  But, I asked her if this was because of my weight?  She knows I have been busting my tail working out and the weight is not budging (for another post, I’ll get there).  She said that if my heart was stressed, these results would be different.  Then, I asked her if I needed to stop working out…(am I going to have a heart attack and keel over in Zumba?)  She said that the cardiovascular exercise will only make my heart muscle stronger and make it work more efficiently.

OK.

You know on a heart monitor the pointed line that goes up and down and beeps?  Mine doesn’t go as high as it should, or as high as expected.  My cholesterol is good.  My HDL is good (I think it was 54 or 57).  I don’t think any of this is related to brain tumors or rare, genetic conditions.  But, I am not a doctor.  She is going to order another test this week.

What does this all mean?  Does it mean the life I thought I deserved is out the window?  Does it mean I haven’t relied nearly enough on the Lord to calm my soul (I almost typed “heart” but that would have been too funny).  I state many times I have this blog to write all this garbage down. All the fear. All the unknowns.  All the woes with my financial struggles, burdens, direction of my life, wishing my life were different, all of that.  And, then I leave it here and go take care of myself to sleep well.  Listen to nice music.  And just do the best with what I can tomorrow.  I don’t blame God.  While I’m confused and very fearful, and wonder WHEN “This Too Shall Pass”, it’s becoming painfully clear to me that….

“This” may not pass.

 

Friday Facebook

I do my best to put all medically related posts on here. But sometimes, I happen to be on Facebook and it’s just easier to write a quick update there instead.  Like tonight.

If you are on Facebook and would like to “LIKE” my page for updates (which come from the blog directly or short ones from myself) – click here.

 

What is busy?

I’ve said this before.  Cowden Syndrome (and for me, Lhermitte-duclos Disease) keeps you very busy.  Busy with medical appointments with your entire team of doctors, constant screenings to make sure that if you do get cancer, it’s caught very, very, early.  I get it.  I don’t like it.  But, I get it.  (And I know I used too many commas in that sentence, but I’m over it.) 

I need to be thankful.  Dr. L said last week, “Looks like most everyone has their hands in you.”  That may sound super gross (baha), she said that in response to my colonoscopy consult in a few weeks; my brain MRI that is in the process of getting approved/scheduled; I just saw my primary doctor last week; she and I reviewed my mammo results…and that’s only August!  (Whew!)

While I get super frustrated that my life is no longer what it was July 17, 2011, (read:  What I WANTED it to be) I am truly grateful that I have medical coverage and there are many doctors who are watching me.  My anxiety kicks in all too often because I know that all my doctors have other patients on their case load, and (most likely) I am the only person with a rare disease, and let’s be honest.  Rare Disease stuff isn’t the norm.  Cowden Syndrome isn’t a cough, and Lhermitte-duclos Disease isn’t a broken leg.  These 2 syndromes have their own agenda most days.  And, there’s not enough data for anyone to look back on and say, “Oh.  Let’s see Heather.  Gangliocytomas grow about 1/2 mm. every 3 years.”  There’s none of that.  So.  Life moves on.

Anyway.  Last week I saw Dr. L (the oncologist) to follow up on the mammogram from a few weeks ago.  I always breathe a sigh of relief when I do not receive a phone call from her in between my mammo and her appointment. Thankfully, this go-around didn’t disappoint.  She and I have a nice routine in play.  While I alternate every 6 months between breast MRI/mammogram (to manage my breast cancer lifetime risk of 85%), I see her the other 6 months for an office visit and clinical breast exam (so, basically I’m getting my Dairy Queens checked somewhere/somehow every 3 months or so.)  This routine does help lessen my anxiety quite a bit. And, to be honest, I go back and forth between recalling that I have no family history of breast cancer (!).  Shouldn’t this account for something? Anything? With my PTEN gene?  Or any of my freaking genes?

I don’t know.  I don’t know anything. What I do know is that our lives are filled with busy.  Busy-here.  Busy-there.  It just so happens that I have two more layers of busy on mine with life with Lhermitte-duclos Disease and Cowden Syndrome.  I do have a smart phone.  I am learning to rely on it more.  I’m learning the Cloud more, errrr, kinda.  I don’t get it still, but I’m trying.  I’m trying to get help where I can.  Whereas, this Rare Disease road I must walk on alone, I’m thankful there are those of you who choose to walk with me. I cannot force anyone to walk with me, I learned that the hard way a few years ago.  So, I am more thankful for those of you who willingly come with me. Those who want to learn.  Those who ask.  Those who are scared of brain tumors and rare, genetic conditions, but who connect with me nonetheless.

I know I am NOT Lhermitte-duclos Disease and Cowden Syndrome, those are just 2 things my body has.  But trying to find my place in the world, adapting to these huge life changes, has been really bumpy.  Bumps suck.  I’ve also learned that you go over bumps.  And then the road is smooth again, if even for a short time.

 

There’s still time!

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There’s still time to order your custom shirt that will help me (this is a crowdsourcing event) AND will bring awareness for Lhermitte-duclos Disease and Cowden Syndrome. Click here to reserve your shirt!

Thank you!

Also, I have decided that I am going to donate a portion of the money raised from this campaign to Global Genes.

Fun Fact Friday 8/29/14

Have you heard of WEN?  Or Chaz Dean?  I may have written about him before; I am a huge fan of his products.  There is something about them that really makes my hair different (no joke).  Really really.

Even Mom has gotten on the bandwagon, albeit slowly.  (Mainly because I talk about Chaz, or because I have QVC on all the time, she’s bound to pick up on my messages!)

Last week I asked Mom, “What’s that smell?” (she was in the bathroom getting ready) -

Mom:  “Oh, it’s three sixty-nine.”

Me:  “WHAT?!”

(She meant Chaz Dean’s SIXTHIRTEEN.)  I tweeted this exchange to Chaz and he retweeted it!  Too funny!  :)

“If you stay too much in the past it’s going to keep you there”

Have you heard of the show Married at First Sight?  Now, I don’t want to debate anything on this show, really.  It’s just a reality show like all the others (to me).  But, I do admit to watching it and last night one of the “experts” said this quote and it really resonated with me.  Here’s why:

I know I am stuck on the brain surgeries. I know they paralyze me with fear daily.  I know that I must use every ounce of strength I have to overcome the terror from those 2 experiences and move on.  I know this.  I know it’s my past.  I know it was 3 years ago.  I know that today I am not having brain surgery (and I better not have to have another one, but that’s besides the point!).  I know all this.  My rational mind tells me this every single day.  “It’s done.  Move on.  Get going.”  But I am here to tell you it’s not easy, folks.  Sure, there are good days, and even better days.  (Yoga makes some days better!)  And in fact, there are some days, that turn into weeks, where I don’t think of laying on the operating bed being wheeled into the operating room.  That I don’t think of exactly what I was feeling minutes before that.  Saying, “I love you” to my Mom wondering if I was ever going to see her again.    This is all my past.  I get that.  But the problem is that I am living with 2 brain tumors and the unknown of having another brain surgery(s).  I know that’s the part of life we all must deal with – the unknowns.  I didn’t know I was going to get 2 brain tumors, until I did.  And, I don’t know I’m going to get breast or colon cancer, until I might.  Or will.  Or who knows.  This is a weird road to be on.  This is a weird thing to have to wrestle with every single day.  This is my cross to bear, just like we all have our crosses.  These are mine.  I get that.  I’m not downplaying anyone else’s.

So, to the point of the quote:  If I stay too much “in” the brain surgeries, it’s going to keep me there.  How true is this!  It was magic to my ears, really.  But, no amount of Yoga, or substitute teaching, or shopping, or anything will magically “snap” me into the present.  If there were, I would have snapped that band years ago.  I’m sure if I wasn’t struggling so much financially it wouldn’t be so difficult to leave the past in the past. If I felt some semblance of my life “before surgeries” I probably would feel more confident in the direction my life is presently.  (Isn’t it funny how much stock we put into money? Or employment?  And when those are “taken” from us how much it rocks all we thought we were?) – in fact, maybe that’s the root of things.  That since I’m no longer working (I do substitute teach but I don’t really call that gainful employment) THAT is where I am stuck.  Or WHY I am stuck.  I don’t feel confident in my abilities as an employee, and to be honest, I don’t feel confident in my abilities (that’s not the right word but just work with me here) as a woman.  But every day I try to do this. I try to leave the past in the past and get IN my present and future.  And yet every day feels like a failure.  Utter failure.

Cowden Syndrome robbed me of that ability.  That choice. That right.  Yes, I believe it is a right of every woman to be a mother.  Not that every woman treasures that right, but that’s another post, too.  That beautiful opportunity to be a mother.  And these dang brain tumors robbed my confidence.  I don’t know what the answer is.  I don’t know the magic elixir to “get on with it”.  Because if I knew what it was, I would have drank it years ago.  I guess I am tired of things being hard.  I am tired of being scared.  I am tired of feeling weak.I don’t know how to tie this post up into a nice little bow and say, “Well, here it is.  Here is how you leave the past in the past and just deal.” 

 

This is my life.  It’s real.

Guess I need more of that hope today.

Control. Thou hast none.

This week I have worked on a blog post about control, or lack thereof.  I never considered myself to be a controlling person; not by a long shot.  But Lhermitte-duclos Disease and Cowden Syndrome teach me that I CONTROL NOTHING.

I have quite a bit to say about this and all week I was planning on writing this morning.

Then, I woke up with another vertigo episode.  Very severe.  Is my cerebellum getting angry?  Tired?  Irritated?  Is there something going on with the brain tumors?  My gut says, “Oh no.  They haven’t grown in 3 years, so I’m in the clear.” 

However, another part of me says, “You haven’t had vertigo (like this, or ever) since the brain surgeries.  This would be right on track.”

My neurologist is out of the country.  But, the MRI he called for a few weeks ago is in process of getting approved/scheduled.  So then there’s that.

PS, please check out my advocacy campaign and consider buying a shirt if you can.  Thanks!