Day 4 of Brain Tumor Awareness month and today I decided to share a little bit of data (that I could find) about the type of brain tumor I have: Gangliocytoma. My understanding is that this is a very rare, but benign, brain tumor that makes up about 1% of all brain tumors.
Sadly, a few of the “main” brain tumor org’s I have found do not carry much, if any, data about Gangliocytoma. Yes, they are rare. Yes, they are benign. But, it is still a type of brain tumor and the data that *is there should be included. I think that is one of my biggest frustrations since diagnosis: inclusion of *all types of brain tumors.
Anyway. Below is one of the (few) links I have found in my research. I pray that more data will be collected!
- You have two brain tumors.
- You have a rare genetic condition called Cowden Syndrome.
- You had 2 brain surgeries.
- You had a prophylactic hysterectomy.
- You had thyroid cancer and had 2 surgeries as well.
- Once returning to work after both brain surgeries, you were bullied and forced to quit.
- You now have some cognitive issues.
- You applied for Disability.
- You were denied Disability.
- You tried to raise money to survive.
- You were forced to file bankruptcy.
But just except it, Heather. Then you’ll be fine.
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 understand. She’s at rest tonight.
I have a hole in my heart.
I will miss you Candice. Thank you for your friendship and support.
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!
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.
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.
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?
Here’s a blog post from another brain tumor champ. Check it out! I second everything she writes. Really.
What if I just had a ? And not a genetic cancer syndrome
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.
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!