No words

I’ve never known anyone with a brain tumor before.  Since diagnosis a new world has opened up for me.

There aren’t any words.  Brain tumors and cancer scare the shit out of me.

One of my virtual friends fought a battle I cannot ever understandShe’s at rest tonight.

I have a hole in my heart. 

I will miss you Candice.  Thank you for your friendship and support.

Guest Post – Meet Heather

I am really thankful that a few more people have reached out and shared their Rare Disease story with me.  I am so blessed to have this blog and to be able to share my story with others!  Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you.  Besides our name, she and I have a lot of other things in common too!  Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD.  If you would like to contact her on you can do so here.  Please meet Heather!

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I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School.  I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!

Two years ago I was diagnosed with breast cancer. I found out after the fact that I was at an increased risk for breast cancer due to the Cowden’s. I was asked if I wanted to undergo genetic testing during this time. I was told that I met all the signs and symptoms for Cowden’s Syndrome but they could tell me officially if I had it. At first I did not see the point in paying a lot of money to find out that I officially have Cowden’s. I ended up getting tested because my sister had just gotten married and wanted to know if she had it. It was easier for them if I got tested first to see where the mutation was. So last year I officially was diagnosed with Cowden’s Syndrome. I had to have a hysterectomy 4 months ago because of complications from the breast cancer and having Cowden’s.  Currently, I am dealing with cognitive side effects from having two concussions two months apart. The doctors tell me that my case is different from most people because I have had two brain surgeries too.
Having CS and LDD is not fun as all of you know but I am doing the best that I can. I try to take one day at a time and do the best that I can with what I have.  My mantra is “In life, you can only play the cards you were dealt.” I get tired of always having something wrong with me so I tend to push through things so I can continue to do the things I enjoy. I may have a rare genetic mutation and a complicated medical history  but it is not going to define who I am.

The EGD that wasn’t supposed to be

Every time I go to the hospital I swear it’s going to be different.  (But before I start my story, what is it about the hospital staff SHOUTING MY PERSONAL INFORMATION OUT FOR ALL THE WORLD TO HEAR?!  “ARE YOU STILL AT XX?”  WHAT IS THAT ABOUT ANYWAY?) I thought hoped prayed yesterday would be different and that at least I would have good veins.  Good, healthy, freaking, FAT veins in my arms that a needle would slide right into.

Ugh.

But, alas.  No.  Nope.  Didn’t happen.  Even with all my meditative mantras of, “Good veins.  Good, healthy veins.  Good veins”.  While my veins didn’t cooperate yesterday and I did have to have the IV in my hand (UGH!) I had 2 great nurses that were amazing.  That’s pretty rare.  I was very thankful and very lucky.

I was pretty drunk when I got to the hospital so that helped with my anxiety.  Luckily mom was there too and she could help with the weird questions, “Did I have any loose teeth?” and after I finally got settled with the IV the nurses wheeled me into the procedure room (is it called an Operating Room?  I actually don’t know!)  But I stayed in there forrrrrrrrrrrrever.  I don’t know if time just stood still, or the doctor was late, or what.  But, he finally came in but I hardly recognized him.  (Thanks Ativan!)  He asked me some questions but I don’t really remember them.  I told him that I stopped eating bananas and the horrific GERD decreased about 95%.  He thought it was the Ativan talking but I swear.  If you have acid reflux, stop eating bananas and see if that helps you.

The other technician put a plastic thing in my mouth and strapped it behind my head, and I remember the strap hurting my scar so they adjusted it.   I remember one of the other nurses showing me a picture on her phone of an operating room with Jesus Christ looking over the shoulder of the surgeon.  That was really nice to see and a nice visual before I went to sleep.

The next thing I remember I’m in the post-op room and my mom and I are waiting for the doctor.  I must still have been pretty drunk, because when he came in and said, “Biopsy”…I couldn’t wrap my head around that.  I mean, it’s not that big of a deal compared to brain surgeries, but when I saw the paperwork that said, “Multiple polyps”, and he asked my mom who I follow up with (oncologist), I kept pushing him on “HOW MANY POLYPS WERE THERE?”  He wouldn’t give me an answer.  Oh, balls.  Because when I had the colonoscopy and EGD 2 years ago I had 3 total polyps.  This was kinda a whole new ball game.  AND, if you were wondering, I’m not here for esophageal ANYTHING.  So, let’s just get that clear right now.

As I have told my mom all day today (and the end of yesterday), my throat hurts like, “A mother effer”.  Luden’s cough drops don’t do a darn thing for this sore throat.  I’m not thinking the worst.  I’m not thinking about all the cancers not yet documented for Cowden Syndrome.  I’m not thinking about tumor suppressor genes and what havoc they can wreak on bodies.  I’m actually thinking about how when I went to Chick-Fil-A for lunch today I didn’t get fries and I haven’t had chocolate at all today.

I’m here for THAT!

PS, Remember that one time when this happened?

What I learned from my brain tumor (part 1)

What I learned from my brain tumor (part 1).

Here’s a blog post from another brain tumor champ.  Check it out!  I second everything she writes.  Really.

On more food for thought

What if I just had a brain tumor?  And not a genetic cancer syndrome

wondering

wondering (Photo credit: zoetnet)

condition too?

At night these thoughts enter my mind quite obtrusively.

I wonder – would I act different?  Feel different?  What would my life be like?  Would the brain tumor be the only thing I thought about?  Compared to worrying about my spleen, kidneys, liver, ovaries & uterus (until 12/11), my Dairy Queens, etc.?

Of course I’ll never know.  I will never know my life without either of these.  I struggle to remember my life before them, too.

The Not-So-Obvious Benefits of Brain Surgery (and a couple obvious ones)

The Not-So-Obvious Benefits of Brain Surgery (and a couple obvious ones).

Oh how I wish I could have written this!

The above blog is of one of my virtual contacts who (obvi) has a brain tumor also.  I love reading her blog because she writes so well and formulates the things I think and feel yet can’t write!

Where do I go now?

When I started this blog 2 years ago, my purpose was to share updates with friends and family about the brain tumor surgery(ies). Then, I found out about Cowden’s Syndrome – and I wanted to connect with others who have the same PTEN mutation (and still do).

But as time has passed I now want my blog to expand. I still am going to document my journey about life with brain tumors and genetic conditions, but I also want others to see that there is more to my life than rare diseases.

More to come.

 

New feature(s)

Here at hopeforheather there’s going to be a new section called “Photo of the day”.  I’m not quite sure yet how it’s going to come into play though.  One of the neat things about this blog is how things have evolved over time, I guess in the same vein as how I have evolved since my surgeries and diagnosis.

The way I think it’s going to work is that as often as I’m moved, I will post a picture and title, Photo of the day.  I think it’s going to be things that move me, things I’m grateful for, things I find beautiful, things I find enjoyment in, etc.

I have thought these last few weeks how I want to be more to my life than hospitals and medical appointments.  Sometimes, though, there just doesn’t seem to be!  Sure, I enjoy the occasional H.O.T. roll or salad from a local pizza place (which are 2 treats to me), the daily struggles of Cowden’s Syndrome and Lhermitte-duclos pull at me.  All. The. Time.

There are other things in my life that need to be developed (personal development, obvi) and why not write about those parts of me (my life) as well?  While dealing with 2 rare diseases on THEIR terms is rocky at best, there are other things in MY life that I need to write about, so to give them the respect they deserve as well.

I have a category on “Volunteering” – but haven’t written too often about that. 😦

I also have a “Church” category.  I think it’s about time to work on those sections and represent them!

Here’s to 7 hours I won’t see again

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My feet were so cold!

I just spent the last 7 hours in the ER. Something is wrong and I needed to get it checked out. Without getting into too much detail on my iPod, I have to see an endocrinologist ASAP. Thankfully I caught this in time but there’s no extra time to mess around. Not at all. I don’t think it’s Cowden’s Syndrome related but it seems to be related to the brain tumor, from what I can tell.

And I don’t have an endo now! Aaack! Dr F if you read this (OF COURSE) something changes once you leave. I miss you! I wish you could help me with this. :(. The ER doctor thinks its diabetes insipidus. Not the sugar one. Did you even know there WAS another one?

I’m not going to search about it tonight. I’m going to try to sleep although it’s going to be a rough night.

There’s nothing quite like…

Lobes of the brain, color-coded.

Lobes of the brain, color-coded. (Photo credit: Wikipedia)

Sitting in an exam room, alone, looking at a scan of your brain.

There’s just not.

But I could try to put it into words.

I could make the attempt to write what it feels like, deep in my soul, to see pictures of my brain on a computer screen.  And then seeing in my cerebellum a small spot and a large spot that I know shouldn’t be there.

As I read on another blog, I too own space on the Internet where’s it’s OK for me to write about my fears and the uncertainty that Lhermitte-duclos disease brings.

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Please.  Before you judge me and the road I’m walking on, think.  I’m doing the best I can with what I have.

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UPDATE FROM THIS MORNING:  The brain tumors are stable!