May 4, 2020

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!

+Lhermitte-duclos Disease

 

May 2, 2020

Day 2 of Brain Tumor Awareness Month and I am 2 for 2!

I was thinking earlier about what I wanted to share today. I decided I would share a bit about where this blog began.

I began this blog the day after being diagnosed with a brain tumor. I knew nothing; nothing about what was ahead for me. Oh, man. I was so naive! I miss that Heather, to be honest. That Heather knew pain, sure. But she was so little then! ❤ I wish I could go back and tell that Heather I will never forget her. I wish I would have hugged her a bit longer. 😦

If you click here you can read my very first post. I am very thankful that I have those early days that I can look back on.

Have a good evening. Thank you for being here.

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Please don’t forget to visit my Bonfire store – click here! and consider buying your custom t-shirt today! Thanks! 🙂

May is #BrainTumorAwarenessMonth

Hi everyone! So today marks the beginning of brain tumor awareness month and I am planning on doing something different over here on the blog. My plan goal is to write a blog post every day this month with facts about brain tumors, or what my life is like today 9 years post brain surgeries.

Now, I may take advantage of using either Twitter or Instagram to post, but that all depends on how I am feeling each day. (I haven’t yet written about my thyroid ultrasound this week and what that involved.)

So be sure to check out my social media accounts and let’s have a great Brain Tumor Awareness Month! You can follow #btsm, #btam, or #GoGrayInMay to get involved and/or read about other brain tumor advocates.

Good night and be in touch! 🙂

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Check out my social media accounts here and here, and also click here to check out my Bonfire store. Will you be able to purchase a shirt to support me (during Covid19) and my brain tumor and rare disease life? ❤ ❤ ❤ Thank you so much!

Mumbo Jumbo

Life is happening very quickly.

Usually this overwhelms me to no end.

Tonight I find I need to write a bit and then get to bed earli(er) than usual.

I have had a bunch of appointments these last 2 months and I find myself struggling greatly to keep it all straight. Between labs with my endocrinologist and a “spot” in my thyroid bed that we STILL don’t have a definitive answer on what it is…to reviewing my EEG with neurologist and MRI with my neurosurgeon. I told my mom last week that it’s really good I didn’t suffer (more) brain/cognitive issues post brain surgeries because SHE would have to be the one managing all these appointments and scans and results!

It’s a whole lot.

Sometimes I just need to get on here and just say that.

Cowden Syndrome is a lot.

Lhermitte-duclos is a whole effing of a lot.

I know there’s no handbook or manual to manage Chronic Illnesses but imagine how much simpler life would be if there were one!

What would you include in your book? I think I would be sure to include watching a WHOLE lot of 90 Day Fiance! (I’m kinda obsessed, tbh). 🙂

Except it.

1. You have two brain tumors.
2. You have a rare genetic condition called Cowden Syndrome.
3. You had 2 brain surgeries.
4. You had a prophylactic hysterectomy.
5. You had thyroid cancer and had 2 surgeries as well.
6. Once returning to work after both brain surgeries, you were bullied and forced to quit.
7. You now have some cognitive issues.
8. You applied for Disability.
9. You were denied Disability.
10. You tried to raise money to survive.
11. You were forced to file bankruptcy.

But just except it, Heather. Then you’ll be fine.

#HugeNews

I saw a Neurologist yesterday!

I won’t bore you with the details of why I stopped seeing one earlier, blah blah blah.  Good news is I now have one.

I’m kind of processing everything still – all I have really ever wanted is for a Neuro to “have eyes on me” as my brain tumor (and brain surgeries) symptoms are progressing.

Granted, adding another doctor to my team may seem kind of odd, but this works.  🙂 I have said numerous times to numerous doctors that I don’t expect anything to change. I know there are no miracle drugs to help me manage life now and I sure as hell AM NOT having another brain surgery.  Ever. 

Until next time!

Another year in the books AKA Stable 2018!

Waiting to see my Neurosurgeon to review my brain scan. Results are in: both tumors are stable and see ya in a year!

The Struggle Bus rolls along

I went an entire month without writing.  Buh-bye November!  See ya wouldn’t want to be ya!

I am still struggling:  Don’t have too much to update otherwise.

1. Finally had the fine needle biopsy on my (empty) thyroid bed last week.  This was my 2nd one, so I was (properly, or so I thought) sedated and knew what to expect.  Nope.  No.  I was wrong and I don’t win.  The only positive thing was that I knew this technician, but not the doctor, and I think the tech (tried) to do me a solid by “talking” about things with the doctor – that I was able to pick up (if you get my drift….) I won’t go to the bad place here yet, because that’s been happening enough in my mind for the last 10 days already.  I don’t have a diagnosis yet, and I can speculate til the end of time because while I do know some things, I must wait to hear from the endocrinologist.
2. Something is terribly wrong with my shoulders:  I speculate rotator cuff issues?  One of my doctors called in some pain medicine for me, and I will be honest with y’all here, Tramadol isn’t all that bad! I told my Mom a few nights ago that I’d almost rather have brain surgery again than this shoulder pain.  For real y’all.  No fun.
3. Sometimes it’s quite overwhelming trying to manage my schedule.  In the next few weeks I have to deal with all the above, plus my brain scan and neurosurgeon appointment!

No words of wisdom today.  No positivity or self-care mumbo jumbo.  Writing.  Watching Ghost Adventures.  Water and early to bed.

Daily Prompt [Captivating]

I used to watch a lot of movies and I used to be a very avid reader.

Since my brain surgeries those hobbies have gotten pushed aside.

BUT, I just saw Coco and am currently reading Lightning and they are two of the most captivating movies and books (respectively) I’ve ever seen!

Daily Prompt [Sympathize]

I think many people get these words confused:  sympathize and empathize.  Or maybe I’m the one who does?  What do you think of when you see the word sympathy?  I feel sadness.  Loneliness.  It has such a bad connotation for me.

I would (safely) assume that many people felt sympathy for me when I got diagnosed with the brain tumors.  And Cowden Syndrome.  But now that things have “passed”, I feel forgotten.  I crave empathy so much.  I feel guilty when I “complain” about my lot in life now, but you know what?  This is my blog.  This is my safe space.  I am not complaining.  I am processing.  I am explaining.  I am working on not letting my feelings eat me up inside and making me sicker than I already am.  I will write everything here that I need to.  Period.

Not one single person (except maybe a certain one) gives a rip about what I am enduring now.  OK, OK.  I get it though.  We are all struggling.  Everyone has something.  And, these brain tumors and Rare Disease are mine alone.  But, when I get overwhelmed (as I did yesterday) – to whom do I turn?  Strangers on the Internet who actually seem to care about me more than my “real life” friends?  No one wants to hear it.  No one now even empathizes with me and the financial and emotional duress I am under every single day.  As I’ve mentioned before, some days I am able to work – on-call.  My brain cannot endure working 2 days in a row.  There is so much sensory stimulation and information that my brain is trying to process that after 4 hours, I am done.  My brain is done.  My entire body is done.  I came home right after work and was on the verge of a panic attack.  I took a Xanax and slept for 2 hours.  I am overrun with stress and anxiety, and I am afraid that the more I must “push” myself (working) – I will make my brain worse.  Or make the brain tumors grow.  Do you know what I mean?  I just felt like yesterday I was going to break.  I wanted to break.  I wanted all the pain to stop.  I tweeted that if this was all my life has in store for me, even if I live the next 20 years, I think I will reconsider.

I fear I will be remembered as a statistic of brain tumors instead of as a human being.  That’s one of my greatest fears.  That, and dying alone.