Checking in

Hey friends:  I am still here! It’s been a while, and thought I’d catch up quickly this evening.

  • I had “surgery” on my thumb this week.  5 stitches for my trigger finger.  Blergh.  Not fun in the least little bit.
  • I had my mammo last week, because you know, Cowden Syndrome and high-risk breast cancer risk.  It was “normal”!  #winning
  • Since I just got my mammo I can now try to sort out my screening timeline again since Corona jacked *everything up.  Basically, someone is getting to second base with me every 3 months.
  • What are you watching lately?  I am a relatively new fan of BB (Go Ian!) and have been watching since #BB16.  Still into every single version of #90DayFiance, and just finished another Joe Exotic thing.  I liked this one the most as it followed up on some of the Big Cats Joe abused.  I am now a follower and newest sponsor of one of their residents.  Check out the sanctuary here!
  • Trying my hardest to keep my hope and head above water.  How are you doing in the time of Corona?

 

the fork in the road

I created this blog 9 years ago to document my life living with 2 brain tumors.  Yet, as I sit here this evening I cannot bring myself to write about anything.  I’ve never had a filter here, and I am not purposely holding anything back.  It’s just that I cannot connect anything in my brain to share.  Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease.  I had a visit with the ENT last week to talk about my tinnitus.  I could write about that at some point, I suppose.

So, what should I do?  Retire the blog?  Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts).  Is anyone still here?  Would love to hear if anyone’s still here with me.  This whole “Content Creator” trend definitely isn’t how this blog began.  Unsure if I can make the transition.

Life goes on, as painful as it may be

I am still trying to navigate this grief.  Not doing super well, tbh.

Reading sometimes help to distract myself.

Taking and editing photos sometimes helps as well.  Visit me at @ZHeatherChamp to see!

Cowden Syndrome doesn’t stop for anything; and I continue to schedule and manage medical appointments in the midst of 2020.  🙂  Thank goodness for planners!

Please tell me how you are doing?

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 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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