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.

Advertisements

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? 

Daily Prompt: None

Boy. Sometimes I can sit before my computer and just write and write and write.  Some days I am filled with angst about Cowden Syndrome and the brain tumors, and other days I can forget it all.  So weird.  Yet such a blessing.

At times I like to write about other things (my cats, books, my church) to convince myself that I am more than my medical condition.  These Daily Prompts are helpful.  When I read today’s prompt though, I couldn’t piece anything together.  Sure I would like:  NO more doctor appointments.  No more MRI’s.  Could I imagine saying one day:  No more MRI’s for me.  None!

Could I make the decision to stop scanning my brain?  Stop scanning my breasts, colon, kidneys, et al?

Doubtful.

Stable is as stable does

I have had a rough few days.  Not sure why; not sure what triggers them.  I have to accept the bad days, along with the good.

So, I had my brain scan a few Fridays ago.  Saw the neurosurgeon the following Friday.  Stable.  Stable.  Stable.  In fact, the radiologist said “Grossly stable.” GREAT NEWS!  If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?

Although I struggle with wanting needing to know everything about the brain tumors.  Has there been minimal growth?  MRI’s aren’t 100% accurate.  So, how much are we off?  When will I be told there IS growth?  When will the “MRI’s not 100% accurate” show growth? Does that make sense?

I know I must accept the stable.  And, don’t get me wrong – I do.  But these dang brain tumors keep me up at night.  Sometimes I can’t believe I have 2 brain tumors in my cerebellum.  Why me?  What did I do to cause this?  Why do I have 2 tumors? Blah, blah, blah.  Same story, different day.

So, I got up this morning and went to the gym.  I try to combat the bad days with something good.  Something different.  Something outside my comfort zone.  Putting stability into my life where I can.

That brain scan life

Yesterday morning I had another scan.  I wish I knew how many I’ve had since diagnosis.  (I bet it’s 10X more than I think.)  You know, I think hope wish that every time I go it’ll get easier.  It doesn’t.

I have to ask the MRI technician every time the following questions:

  • What if there’s a power outage while my scan is happening?
  • What if something happens to you while it’s happening?
  • What if there’s an earthquake while I’m in there?
  • What if there’s a natural disaster?  Or an emergency at the hospital while I’m in there?

The technician is pretty funny; he knows me by name and me him.  He always talks me off a ledge, which I appreciate.  Plus, I’m usually medicated so that helps 150%, too.

I practiced my visualization:  I am at Disneyland.  I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park.  (It’s a neat little tip that works for me!)

Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”

We shall see.

Brain balance

I had a brain scan this week, and saw the neurosurgeon on Friday for the review.  I was up super late last night going through the report with a fine-toothed comb.

Just participated in a #BTSM (brain tumor social media) tweetchat.

I had a terrible dizzy episode this morning right after I woke up.

At church last week I had a horrible experience in teaching my Relief Society lesson.  The connection between my brain and my mouth was lost.  I couldn’t get the words out.  I lost it in front of the sisters.  I cried.

I also had a good dinner with a friend Friday night.

I bought some new shoes and a new workout top, too.

I have done a lot of sudoku puzzles these last couple of months.

Went to a zoo with my family.

Usually, my brain stuff keeps me up at night, but what I continue to learn each day is that I have to balance my life and my health.  I don’t do it well, and I don’t do it often.  I just get to keep practicing.

 

(Thankful)

I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.

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?