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!
I’ve made that my thing over the years: Every time I have a brain scan I treat myself to new fun socks!
This year’s pair is an early Christmas gift from one of my BFFs.
(Can’t sleep. Stalling. Putting it off.)
Tomorrow will be here before I know it. Come what may!
Results of FNA: NON-ANSWER.
The 4 samples taken from my neck were bloody messes and no one knows anything. A repeat test (fine needle aspiration guided with ultrasound) was recommended but that is a hard no from me.
Thank u, next.
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.
No words of wisdom today. No positivity or self-care mumbo jumbo. Writing. Watching Ghost Adventures. Water and early to bed.
It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.
I’m struggling. Hard.
And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?
I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.
Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.
Had the thyroid MRI last week and waiting to hear.
Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.
I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.
Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.
Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.
Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.
I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.
I wanted and hoped for so much more in my life.
So. Do y’all remember when I saw my Endo and he told me my “thyroid” is growing back and I have elevated thyroglobulin now? (For those who don’t remember, I had a total thyroidectomy in 2003 (and follow up in 2006) for a huge thyroid goiter. It was 10X larger than normal on the right lobe, and 4X larger in the left. Makes a hell of perfect sense knowing what we know now about Cowden Syndrome.)
And how his office called me the NEXT day to tell me he wants me to have a thyroid MRI to decide what’s next?
And how I have to “be patient”?
I’m about to spit nails. IF YOU DO NOT STAY ACTIVELY INVOLVED IN YOUR OWN HEALTH CARE YOU WILL BE NOTHING LESS THAN A STATISTIC. THAT IS ALL WE ARE TO THE MEDICAL FIELD.
Here’s all I know as of today:
1. Referral for MRI hasn’t been submitted yet. Full. Stop.
2. Apparently my doctor put the order as “routine”, so his entire staff is on slow-mo. Literally.
3. Said office is waiting on clarification on order from yet ANOTHER department.
4. Was told they “hope” to get info by the end of the week. THEN the referral will be submitted.
WHAT THE EFF IS WRONG WITH THIS PICTURE?! Don’t call me a worry wart either, which is what the receptionist (who had very big balls, I might add) said to me. This is our medical system! I’m not disabled apparently, while I’m living and trying to survive with these 2 brain tumors and watching and watching with a microscope
if when I get cancer!? Cowden Syndrome and LDD have ruined my life. And continue to drag me through the mud.
Yet I’m expected to cope with this crap and bloody anxiety and pressure having to MANAGE my doctors doing their damn job? And if I find out the thyroid cancer IS back….they best be on guard because I will raise holy hell like none other. Thyroid cancer is NOT the Cadillac of cancers and should not or will not be treated differently than any other cancer.
I’m so pissed – if I drank I’d already have downed 2 shots by now and it’s only 9:30 this morning.