Record Scratch

Isn’t it amazing how things can change so much in 48 hours?  Even 24 hours?

So a few days ago I was panicking that I might have cancer in one of my lymph nodes and that this new 5 cm. mass in my right thyroid bed was b a d n e w s.

I had the CT scan Friday morning and my Endocrinologist called me late morning.  He said, per the Radiologist, that he DOES NOT need to biopsy the mass.  I’m guessing fatty tissue?  Is that part of Cowden Syndrome?  I actually think it is, at least to a point.  But, as that fatty tissue grows, then what?

Anyway, and evidently there is NOT any metastasis in my lymph node.  The ultrasound technician thought it was, or theorized there was. Regardless, I have that on the top of my list of things to ask my Endo. next week. WHAT the freak is/was in that lymph node then?

So, taking small victories as they come I am breathing a sigh of relief.

PS In the midst of all this whirlwind I had decided to put my Twitter and Instagram accounts on a hiatus of sorts. But I had forgotten I had a previous commitment on IG so I have brought that one back.

 

Urgent

8:30 am tomorrow morning I have my urgent CT scan. I feel how I did 9 years ago during that week’s time between the brain tumor diagnosis and the first craniotomy.

Trying to read. Trying to distract. Trying to stay relaxed and as calm as possible.

Month by month

I have a feeling that in the next few months Cowden Syndrome is going to show me how much of a witch she really is.

Possible nodal metastasis. Are you freaking kidding me right now?

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 3, 2020 a bit graphic

Day 3 of Brain Tumor Awareness month and I chose to share a picture from my v long recovery.

This photo was taken August 2011, about a week after my 2nd craniotomy. Not a pleasant sight.

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!

Bookz

I traded these at a Little Free Library today! Although reading is pretty hard for me post-op, I’ve had a deep love for books and reading since grade school.

Stop it

I thankfully just avoided a panic attack. I’ve been through this for so many years but the anxiety just doesn’t stop.

At times my head (skull) itches. I’m sure the nerves healed after both brain surgeries in a weird way which causes the odd itchy places.

I was rubbing my usual itchy spots (right near the incision) just now and I swear I heard (felt) a type of crunchy sound. That’s new. That’s weird. Then it hit me. Hard.

I’m grateful I was home with my mom. I started the 5,4,3 thing (which I don’t know if I did it correctly) but it helped ease me down.

Nine years after brain surgeries and I’m still no better at accepting and coping with Lhermitte-duclos Disease.

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

  • She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
  • Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
  • She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
  • She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
  • Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
  • For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

  • She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
  • Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
  • She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
  • She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
  • Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
  • For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!