An open letter

To the person I came in contact with earlier today on Instagram. Remember, you were on my account, but that’s no matter. Since you blocked me, I have no way to respond but thankfully I have my own place on the Internet to share what’s in my mind and heart.

1). OK. So, you have the PTEN mutation as I do. You have that listed on your profile, and I can only assume that’s why you followed me. I saw that you noted “brain surgery warrior” or some such thing on your profile. Since you noted that on your account, I only *safely assumed that you must have LDD like I do. (Now, for those that don’t know, LDD is a very rare type of brain tumor associated with Cowden Syndrome. I only asked you about it since I assumed you have the same type of brain tumor as I do.)

2). That’s crazy that you too had a chiari malformation. I too had that, due to the size of the brain tumors in my cerebellum my cerebellar tonsils were pushed down and hence part of the reason why I needed the craniotomies.

3). I wrote numerous times in our chat that I didn’t mean to overstep any boundaries with you. Since you didn’t know what LDD was, and to be honest, may persons living with PTEN mutation DO NOT know what it is either. I only shared what I know. I wasn’t barking orders at you. I am fully aware how overwhelming life with Cowden Syndrome truly is. I know you didn’t *ask for advice, nor was I giving you any,. I was only “chatting” with another person who truly understands how overwhelming the PTEN life is. That you took offense to our chatting, I am sorry for that. I hope that you have great doctors who will keep you in the loop for the health of your brain moving forward.

Blocking me seems childish for some reason, but you do you. It’s a lot to manage! You can do it! I’ll be here if you ever need anything. I wish you all the best!

Brain Tumor Life

I don’t think I’ll ever get used to having a brain tumor.  I guess, that’s understandable right?  I mean there are 2 foreign objects things types of poison in my cerebellum that wreaks havoc on my life.

SIDE NOTE:  I began to read  the Wikipedia link on the cerebellum.  I now feel like vomiting.

I work temporarily, on-call, and when I am physically able.  I worked for several hours yesterday, and what do you think today entails?  Resting.  Reading maybe.  QUIET.  I cannot tolerate the TV, music, radio, podcasts, NOTHING.  It’s so annoying.  And, frustrating.  I just want to live a normal (what’s that, right?) life and feel like a contributing member of society.  It always goes back to the financial duress I am under every moment, and that I am unable to finance my life and support even my bare living necessities.

What happens to people like me?  Where do we go?  Are we forgotten always?

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

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!

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.

Do you need a fresher-upper?

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. ”

NOTE: There may be some information in this post that you may find uncomfortable. Please be warned! 🙂

Have you heard of Fresh Assist? It is a nifty product that states: “Get Clean in Between!” What a novel idea! Getting clean(er) can only be a good thing in my book. #AmIRite?

The Fresh Assist Spray came at a very good time in my life. While I haven’t (yet) been diagnosed with IBD or something similar, I have struggled for many years with chronic constipation with episodes of diarrhea. I always attributed my GI issues with being overweight, and throughout the years I seemed to manage the episodes relatively well with over the counter items and adding a fiber supplement to my diet. With all that being said, the times I experience(d) my GI issues I did have a lot of struggle getting “clean”.

Now I find myself in another situation with struggling to get “clean”. My fine-motor skills are decreasing quickly. (My fine-motor skills are decreasing due to the two brain tumors in my cerebellum. Your cerebellum is your balance center and you can read more about it and how it functions here. Your cerebellum is also called the “small brain”. I have had 2 brain surgeries and the tumors are still there.) I have difficulty grasping things (pencils, keys, etc.) and often drop things.  Now I have found toilet paper is difficult for me to grasp. Such a bummer! Can you imagine what a pain that is? So, this spray has come in handy. The directions are pretty self-explanatory: “Apply 2-3 sprays to TP, Wipe, Flush.” It made the toilet paper wet a bit, but nothing too drastic.  Plus it’s safe on plumbing.  Another win!


I received the “Cooling Chamomile” scent, but as far as I can tell, there isn’t any scent with this one. (At least to me I didn’t smell anything.) There’s also a lavender scent, but I think I have a lavender allergy so this was a lucky thing for me to not receive that one. If you’re sensitive to smells like I am (read: migraineur) this Chamomile option would probably be best for you. I love the fact that Fresh Assist is free from: gluten, nuts, and parabens. I am very mindful of limiting parabens in my life as much as possible, and now especially since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.


However, with all this being said, I am just not sure this did as much for me as I’d like or expected it to. It is in fact “cooling”, which can be such a blessing when you’re wiping constantly. But, that’s about all I noticed. I still have to wipe several times, but thankfully my private area is receiving comfort. I never got into using baby wipes because in fact, I never felt clean.  Plus I worried about the wipes clogging the toilet.  This spray does help me in feeling “cleaner”, but that’s it.


I would recommend this spray if you have any lower GI issues and need relief from constant wiping with toilet paper. If you’re hoping for another result, I don’t think this product is for you.

Real Talk

I struggle to stay present.  To be in the moment and really fully experience each moment of my day.  To not worry (so much) of my financial struggles and really enjoy my life.

This weekend I went on a quick day trip with a friend from church.  It was so much fun!  Right until I got dizzy.  About 1/2 way into our drive the bottom dropped out and everything for me came unhinged.  I was nauseous, the car was spinning, just crap.  Crap crap crap crap crap crap crap.

My day started out wonderfully, then this happened.

Real talk time. 

Heather:  This will continue to happen.  More dizzy episodes.  More balance problems.  It’s expected after having your cerebellum dug into TWICE.  Relish the good days, and be good to yourself on the bad.  Be strong when other people doubt you.  You will continue to meet the haters.

Leave them in your dust.

“What’s your cerebellum?”

I have met quite a few interesting people since my diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  And, to be honest, many of these “interesting” folks have been medical professionals.

I had blood drawn this week, and sometimes I mention to the staff my medical history (but only if it comes up in conversation).  The technician who drew my blood was new and I’d never seen her before.  We began to talk about my veins, whether I was hydrated (I was fasting), things like that.  I should have known things were going downhill fast when she began to push down hard on my arm.  I had to hold my tongue to not tell her a thing or two!

I know enough to tell them they need to use a butterfly needle, as I have deep veins and lots of scar tissue from the surgeries.  She didn’t like the fact that I told her that.  Then, as this continued I mentioned the brain tumors in my cerebellum and Lhermitte-duclos Disease she said, “What’s your cerebellum?”

I about lost my noodle.

I didn’t mention this to a restaurant worker, or a teacher, or a bus driver.  This conversation was with a person who works in the medical field.  Basic anatomy 101.  Kinda unnerving, to say the least.  Especially when I got home and saw my arm.




A bit more P.T.

Just came home from another P.T. visit. I am really lucky I got a few more visits approved.  This Therapist is outstanding, and I know I have mentioned that in earlier posts.  He is incredible at his job, and knows how to challenge my limits and get me right on the verge of tears.  Good tears, I guess, but I wonder is there really such a thing?  🙂

I have mentioned this before also, these brain tumors have robbed me of my confidence.  Confidence in my abilities to do what I once did.  Walking, especially, because of the damage to my cerebellum.  So, P.T. knows to go right to the heart of the matter and PUSH. ME.  I mentioned this morning that one of my concerns, fears, problems, complaints now with my balance is that I don’t feel sure-footed when I walk.  I feel like I am going to fall, especially when I am carrying something, or when I cannot see my feet.  It’s just reality now.  I cope, sure.  And, there is a lot of adapting.  But, I am in physical therapy to get stronger and learn some other skills, right?  So, guess what he made me do?


He put these foam rubber things in a straight line, gave me a box to carry, and had me walk across it.  Without looking down to see where my feet were.  I swear, folks.  It was one of the hardest things I have done in a long, long, time.  It sounds cheesy, sure.  But, try to imagine it.  I choked back quite a few tears.  I cannot put into words how difficult it was to walk across that, or how it made me feel when it was over.  Almost every single fear I have he magnified in this exercise, but for a greater purpose and I get that.  I get that it was pushing me through the fear.  Lots of fear.  I know I wasn’t 10 feet off the ground (and that I was always safe), but the fear of falling was still great.  I walked back and forth a few times, then thankfully we moved onto another exercise.  My mind was mush after that!  Couldn’t I have just done some sudoku instead?  LOL

When I got to the treadmill, he had another tricky thing in store for me!  I walked a mile on the treadmill, without holding onto the sides (so effing hard!) and he placed a sheet over the top of the machine so I couldn’t see my feet.  It almost made me sick to my stomach that I couldn’t see my feet.  I never realized how much I need to see my feet to get my bearingsWhen he took that visual cue away, it was painful.  I was literally sweating everywhere.  Kind of gross, actually.  I am mentally exhausted and I want to take a nap.  I probably need to push through this but I think I am going to listen to my body this time.  Sleep, I am coming for you in a bit!