Daily Prompt [Disrupt]

My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling.  Trying to find my balance and inner strength.

I am so very thankful to have gotten through these last few months relatively unscathed.  🙂  The EGD and colonoscopy was rough, but completed.  And then breast MRI was “easier” than I remembered!  The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it. 

Also, I haven’t received a telephone call from my oncologist.  I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.

Today I have errands to run, appointments to complete, and blood to be drawn from my arm.  I best get going and I hope you all have a great day today!

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Daily Prompt [Suddenly]

There are about 18 different directions I could take this prompt.  However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?

If we go back to the beginning, see this post about what led me here.  (Boy, I just took a few minutes and re-read those posts from the early dark days.  My anxiety is full-bore right now…I am so thankful that time of my life is over.)

Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also.  It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two.  HAHA.

Yet, life doesn’t roll like that for me.  I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry.  This month I have a lot of medical procedures and I am already nervous about them.  I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week.  I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.

Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again.  I tell the doctors every time that I need to be sedated before going in.  Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under.  And that sucks eggs.  Bad.  I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in.  He got it!  Please keep your fingers crossed that it will be smooth sailing.  🙂

I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.

The last week of March I have the breast MRI.  I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.

My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease?  What’s Cowden Syndrome?  What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it.  I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.  

 

Daily Prompt [Insist]

I’ve read different blogs for about 30 minutes this Saturday morning.  Trying to understand what I am feeling, or at least distract myself from what I am feeling.

Some mornings I awake and think to myself, “I should write today.  There’s so much anxiety coursing through my veins, I need to get it out.  I need to cry, scream, rant, process it all here.  I am actually quite nervous about my breast MRI next month.  I wonder if this will be the day I get the news?  Will I hear the “C” word that day?

Then I have my consult for my colonoscopy and EGD this month.  My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see.  So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them?  OH, I CANNOT PAY THEM.  That’s right.

And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy.  And, I had 2 job interviews these past 2 weeks and didn’t get either job!  What gives?  Why can’t I catch a break?  My life sucks and I cannot get my head above water.  I feel like I am drowning, literally.  I don’t insist on much.  Really.  And now, I don’t hope too much either.  I’m tired of the stress. When will it end?

Whoa.  As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”

Daily Prompt [Tend]

Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD.  I always tend to wonder, “Is today the day I get diagnosed with cancer?”

I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days.  My life now will never not have any medical/doctor type things in it.

I must remember to B R E A T H E through the anxiety….

Cowden Syndrome never sleeps. Kinda like me!

Today was my oncology appointment. Gah.

I had a few months of “quiet” but that’s now over. The breast MRI, colonoscopy, and EGD are next up to bat.

I’ve come this far, but man I’ll tell ya…it’s so much. I’ve always battled generalized anxiety, but when things come at me fast like this, my anxiety is running full speed at 150%.

Praying for sleep tonight.

It’s about that time

Tomorrow morning I have my next brain scan.

Part of me feels like I just had one yesterday, and the other part of me feels like it was 10 years ago when I last had one.  Such mixed feelings!

It doesn’t get any easier; it’s just different now.

On a walk

I’m trying to kick up my exercise again, because surgery last month put a wrench in things.

Thankfully, crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)

I felt like a normal person!  Albeit, for about 15 minutes.  But, still I’ll take it.

Because then I remembered I have my brain scan next month because gangliocytoma.  And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.

I guess this is part of what life entails, right?  Little moments of breathing in between the big stuff. 

Or in my case, the big brain stuff.

doub8m0w0aa-nvc

 

Guest Post – Meet Cora

One of the things I am most passionate about is connecting with others who have this PTEN gene mutation called Cowden Syndrome. I  know I have said this many times, but I only wish SOMEONE would have told me 6 years ago that I am not alone and I am not going to die tomorrow.

Connecting with others through social media has really given me a boost of strength.  I am always excited and humbled when those warriors agree to share their story with me and others:  We have so much to educate the world about!  I have met a few persons who don’t wish to take part.  Of course that is their choice and I must respect it.  I just want to tell the World Internet that there’s this “other thing” that can cause breast cancer, brain tumors, etc. that has nothing to do with the BRCA gene.

I am excited to introduce you to Cora – here is her story (and incidentally, it’s quite similar to mine!)

*

When I was an undergrad, late teens and early 20s, I would get headaches for which there are no bad words, no curses strong enough to cover the pain I felt. I would feel a pounding in my ears and in the back of my head; I wept every time. They usually came around mid-terms and finals so I wrote them off as stress headaches, took my 4 Extra-Strength Excedrin—every couple of hours— for the duration of the headache, and carried on. They would eventually go away so I didn’t think anything of it.

From that time till 2002, I really don’t remember having any other experiences, any other headaches but in late 02, my then-husband and I lived in Buda, Texas, and the headaches returned. For some who have allergies, the greater Austin area is awful; I found out that I was one of those people. I took the headaches as sort of a violent reaction to the pollen that was floating around in the air. I started on my daily regimen of 3 or 4 Extra-Strength Excedrin again and things seemed to even out.

I don’t know when it happened but at some point I started waking up at around 4am every morning from the pounding in my head. I’d get up from my bed and tip toe downstairs to sleep sitting up on the couch; that’s all I could do because every time I laid down the pounding would start again. It started to take a toll on me. One day, in the parking lot of the local Sam’s I passed out. Thankfully someone saw me and brought me inside; thinking it was related to Diabetes, they brought me some orange juice and after a few minutes I felt fine. I passed out again a couple of weeks later, in the shower of all places. With the passing out came problems with my vision and I decided to go see an ophthalmologist. The doctor told me that the vision problems were the result of a “swelling of the optic nerve” caused by, among other things, a brain tumor. He ordered an MRI and that’s when everything started.

The MRI showed that I did indeed have a mass in my cerebellum preventing the proper flow of spinal fluid (reason for the pounding). The MRI was on a Thursday and the doctor prescribed a course of steroids for me to shrink the tumor a little so the headaches would go away; headaches went away but I found that “riod rage” is real, it was awful.

Went to see the neurosurgeon on that following Monday and he told my ex and myself that he “really wanted me to go into the hospital immediately because he really wanted to take the tumor out the next morning” so in I went. I seem to remember someone saying that it was 5 centimeters, it was congenital so it had time to grow. I was 32-years-old.

After the surgery, I remember coming to with my ex, my mother, and my son in the ICU with me. Long story short, they’d removed the tumor and I had what I call a “straw” coming out of the top of my head; the doctor wanted to see if the spinal fluid pressure would equalize or if I would need a shunt (I didn’t it turned out). They’d only shaved the bottom half of my head (??) and the top right bit above my eye for the “straw”. My son, who was 6 at the time and will FOREVER be the most brave human being on the planet…ever, told me I looked like Two Face from Batman from the crazy hair—I love this kid forever.

Next morning the doctor came to see me and we discussed what the next step was. He told me that their pathology books didn’t know what caused it but that it was L’hermitte Duclos, a rare benign tumor. I remember that he told me it had begun to inculcate itself into my brain but being benign, he removed only what he needed to to clear the path for spinal fluid.

No one could tell me what had caused it so I made peace with the weirdness of it and that I was alive and, over the next few years, googled the name of the tumor trying to find out what I could. I kept seeing the name Cowden Syndrome come up in the papers I could get free access to on the net.

In 2003, we’d moved back to Baton Rouge and I got in touch with a neurosurgeon in New Orléans to continue whatever treatment I needed. I brought up to him what I’d found and asked if I needed to speak with a geneticist. He repeated what my first surgeon’d told me, that they didn’t know what caused the tumor, but that he’d happily hook me up with a geneticist if I wanted to… I said yes and met Dr. Thomas. I explained what had happened to Dr. Thomas and he took some measurements, asked me some questions, and we eventually did a DNA test to see if my p10 gene was indeed messed up—it was. Immediately we tested my son and he is fine, thank God.

Wondering how the hell I’d stumbled across all of this Dr. Thomas told me that if an anomaly existed in someone’s genes it would come from the father if he were to have kids after the age of, I think, 53. My father was 54 when I was born.

In 2005, Dr. Bhushan, the best endocrinologist on earth, found growths on my thyroid that were too small to be aspirated with a needle so he suggested that I get my thyroid removed to be biopsied. I did and it was benign.

In 2007 I had a spinal fusion. Completely unrelated to CS but it was an hereditary condition that my siblings and I got from our father.

In 2012 the big deal happened. A mammogram showed that I had some tumors in one breast. My breast doctor along with my gynecologist and I decided that it was important, because of CS, that I have both breasts removed. Before the surgery, we found that there were tumors in both breasts. I had the double complete mastectomy with reconstruction and have been fine since.

I am humbled by Heather’s asking me to post what I went through. I ask your indulgence because I am not a writer and I know that mine is, by far, not the worst case of things. If anyone has a question, or news to share, I invite you to contact me at corabauza@gmail.com.

Left eye (and not the good one)

A few months before I was diagnosed with the brain tumors, my left eye was twitching constantly.  The top and bottom eyelids wouldn’t stop twitching!  It was so annoying.  I went to a few natural doctors around that time (not for the eyelid specifically) who did different types of testing, including muscle testing.  The doctor said I had an intolerance/allergy (I cannot remember the exact term he used) of American cheese, wheat, and something else that I can’t remember either (hello brain tumors and menopause.  I can’t remember crap anymore!)

It’s interesting to note that at that time (6+ years ago) I had been loving er, I mean living on triscuits and cheese.  I think that’s only incidental but hey!  You never know. hehe

I don’t remember either if the supplements he started me on did anything to help my eye.  I do remember though getting diagnosed with a 5 cm. brain tumor 5 months later (cough! cough!)

So, my point is:  I don’t think my left eye has twitched once since this whole Rare Disease stuff began.

Guess what started twitching 3 days ago?  And, coincidentally I skipped my brain scan this mid-year.  (I am ready to do the MRI’s yearly now.)

But that’s really here nor there.

*ALSO:  I have made a few more changes to my Teespring storefront:  Please take a look!

I think it’s time

I realized this week – I don’t want to have a brain scan right now.  I had one in December.  I don’t want another one next month.

Also, I have pondered about a lot of things lately:

  • Why are the MRI’s so frequent? (About every 6 months)
  • Are they this frequent to help ease my anxiety?
  • Does the doctor want them this often?
  • There hasn’t been “significant” growth since 2011.  What does that mean?
  • Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
  • Why don’t I want to have this next scan?
  • Will there be (of course not) any significant change if I push the scan off 6 months?
  • Should I appeal the disability denial?
  • Should I refile?
  • Should I file bankruptcy?
  • Why can’t I catch a break?

When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep?