Give Time Time

I spoke with my therapist this morning.  Why is it so much easier to talking to her?  When she explains things, or responds back to something I said, in my mind I’m saying to myself, “Yep.  Yep.  Yep and yep.”  I wish I could just keep her in my back pocket sometimes and pull her out in emergency.  🙂

I have been making an effort to attend more Al-Anon meetings as of late, too.  I was struck by something my sponsor’s friend shared:  “Give time time.”

Oh, so much to unpack here, but I don’t want to set myself up for another sobbing fest.  I will continue to ponder that phrase and try to apply it.  Every moment of every day.  I have been grieving so very hard my co-worker and and feel guilty about my “lack of” grief for my sponsor.

I haven’t cried for the last 3 days.  Just for today.

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?

10 Days (EDIT: wtf it’s actually 6 days)

In the past 10 days, I have lost 2 friends suddenly to heart attacks.  One passed away this past Sunday, and the other one died the Sunday before that.

I am always honest on my blog.  This is the only safe place for me where I can be fully open and vulnerable, no judgement from anyone or anywhere because this small blog space is mine and mine only.

I am not doing well with these 2 losses.

Maybe I will write more about these painful and sudden losses of life.  These were 2 pretty important people in my life and I cannot see forward.

.

.

.

.

.

EDIT:  So, I cannot do simple math.  Last Thursday I found out a very good friend passed away suddenly.  And a few hours ago I found out a former colleague died.  That is a major blow to anyone, let alone 2 deaths in 6 days.

Wordless Wednesday 5/20/2020

Wordless Wednesday 5/13/2020

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?

Wordless Wednesday 5/6/2020

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