Guest post – Meet “C”

Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome.  I am pleased to introduce you to “C”

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First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!

So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.

I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.

And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.

A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.

Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!

If you would like to connect with “C” – her Instagram account can be found here.  ❤

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#GoGrayInMay

Do you know that this month is Brain Tumor Awareness Month?

Do you have your gear yet? (hint hint!)

If you follow me on Instagram you’ll know I promoted a post to (hopefully) get some traffic and potential customers friends who would help me in my advocacy this month.  If you’re new here, I am living with 2 rare brain tumors in my cerebellum called Gangliocytoma.

Take a look at this link and if you feel so inclined (please!) to purchase a shirt I will be donating 20% of the proceeds to the National Brain Tumor Society.  I initially created these shirts to advocate but also to help me with my daily living expenses.

I’m forever playing catch-up with my life

Where or where to begin?

I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe.  Writing, sometimes, helps me breathe.

Here’s a quick recap on the last few months:

  1. In January, I lost my rescue dog.  I loved him for the past 8 months and he forever changed my life.  I was utterly gutted at his loss, but it was time.  He was ready although I never was, nor ever will be.
  2. Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet.  From the brain tumors?  The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell.  The dot and the period.
  3. Do you remember the thyroid issues I have dealt with since last October?  Last month also, I had another fine needle biopsy on my (empty) thyroid bed.  (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING  ON IN MY NECK! I had have elevated thyroglobulin and my doctor thinks maybe it was a technician error?  Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
  4. Haven’t filed BK yet.  Found out there was some paperwork I need to submit to one of my creditors.
  5. My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
  6. I deleted my twitter account.  I don’t know why; just felt like the right thing to do.  Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
  7. I have this great urge to purge (LOL).  Probably the shame and anxiety about the BK.

So, what else folks?  Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do.  Let’s see if I fight against my norm and do it different.

 

 

Hi

It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.

I’m struggling. Hard.

And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?

I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.

Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.

Had the thyroid MRI last week and waiting to hear.

Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.

🙄🤮

Rare Disease Social Media Tweetchat?

Hi guys.  Do I have anyone here that is on Twitter?  I am really interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases.  I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.

Please let me know if you would like to take part!  Thanks!

Daily Prompt [Patina]

As I read through a few blogs earlier, my thoughts were, “What exactly is patina anyway?”  When I first heard that word, it was from a Facebook group of people who love Dooney & Bourke.  Many people would say, “Oh, my bag has a lovely patina.”

I only assumed it had something to do with the leather handles or edge of the bag?  Discoloration?

I still actually really don’t know, to be honest.  🙂

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!)

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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.

Enter Title Here on 7/27/17 and also, (GRAPHIC?)

I don’t really know what to say when I see pictures like this.  It makes my stomach hurt a bit.

But it’s me and who I am.  ❤

As I have written before, July is always a heavy and rough month for me.  Just because I ponder so much about where my life was and where I am now.  You can read this post as a refresher, but basically I was diagnosed with a 5 cm. brain tumor in my cerebellum on 7/18/11 and then I had a 13 hour brain surgery 7/27/11.  Then, I had another one a week later 8/4/11.

I know that people talk a lot about scars, what they mean, they give us power or strength to see what we’ve overcome, blah blah blah.  I don’t really have anything wordy or eloquent to say about this scar because to be very honest:  it just plain sucks balls.

I think the more I look at it, the more I talk about it or try to embrace it, it’ll be less taboo to talk about.  I read this tweet a while ago that (paraphrased) said:  You talk about your kids and your marriage and your job.  I don’t have any of that and I talk about my brain tumors and my fear of when I will die and what will happen to me.  I freaking love this tweet and hope you will be mindful of that if your friend has a medical situation they must address.

(NOTE:  Many times, at least in my experience, just because someone has brain surgery doesn’t mean the doctors were able to remove the entire tumor.  Please don’t just assume “Oh, they are fine” once they have recovered from their surgeries.  I believe in some cases a neurosurgeon can remove the entire tumor, but that didn’t happen at all in my case.  Plus, I have another smaller 2 cm. tumor that is encapsulated in my cerebellum.  One of my sincerest hopes is that my life after surgeries and with brain tumors can help educate someone about them and how to better support us.)

I am glad today is almost over.  Soon, or probably it should be already, July 27 will just be another day. I am working towards that….soon.

PS, if you’re on Twitter please follow #BrainTumorThursday.  Thank you!

I’m trying to avoid bankruptcy at all costs. Will you help please?

I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.

Take a look at the new shirt I created just now!

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PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me!  Thanks!

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Click here!