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.
- 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.
- 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.
- 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.
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.
But who knows, maybe?
In continuing from yesterday’s appointment, I also have elevated liver enzymes.
I have a fatty liver. Have had for many years.
And, to my knowledge, I don’t think liver cancer is associated with Cowden Syndrome.
But, I don’t know much.
Who knows, maybe?
My doctor said that I know more than him when it comes to this Hereditary Cancer Syndrome.
I “joked” with him that I would be the first patient to present with liver cancer. Like Chandler, I make jokes when I’m uncomfortable.
And, I’m not entirely convinced I won’t be.
So between my thyroid and liver, I feel a heavy burden upon my shoulders. Heavy.
- My understanding is that maybe my liver enzymes will be back to normal soon. The next step on the agenda is to have them retested in December. If the results are still high, then an ultrasound and (possible?) hepatitis blood panel among whatever else my doctor wants/needs will be next.
- There’s a possibility that my detectable thyroglobulin was a fluke as well. I’m getting that rechecked in a few hours and if (when?) the levels are normal that’s a fantastic thing. But, doesn’t explain away the new tissue in the right lobe area of where my thyroid used to be.
Happy Freaking Friday to you, dear Readers! ❤
Words I actually said to my Endocrinologist today.
1. I had thyroid cancer and 2 surgeries in 2003 and ’06. My thyroid is “supposed” to be gone because cancer, papillary.
I’ve always had some remaining tissue in my left lobe area and no doctor has ever given a rip about it. The Endos just monitor it; meh, that’s fine with me.
My thyroidglobulin levels have always ALWAYS been undetectable. Until today. And I have thyroid tissue/nodule/lymph node in my right lobe. Oh, and that tissue on the left has grown.
Blergh. More later.
You know what? Some days just SUCK. Plain and simple. I’m dizzy. Nauseous. Bored. Angry at myself. Frustrated. Worried. And on and on…I kinda only realized TODAY that some days are just going to SUCK. And, I did quite a bit yesterday, so maybe that could be why today blows?
Doesn’t mean I’m doing it wrong. Or that I am bad or less than. That it’s my fault I feel like garbage. Or that the brain tumors are growing or that my elevated liver enzymes mean anything BAD.
This is just part of my “new normal” – I’m going to feel like crap
all most days. I just am. Period. I guess the sooner I get on board with this the better I’ll be.
At least, I should start convincing myself of that.
I saw my primary doctor yesterday, who I shall now refer to as the “Queen of Calm”.
QOC had my lab results that another doctor ordered. (All my docs order labs for me, sometimes duplicates too). Just depends on the day or the appointment. 🙂
We went through them and at the end of our convo QOC tells me, “Oh, but your liver enzymes are elevated.”
She said she’s not concerned. We are re-checking them in 3 months.
If QOC isn’t concerned about it, then I shouldn’t be either, right?!
I came right home and Googled, “Why are my liver enzymes raised?” and a few of the first links I read went right to Pancreatic Cancer.
One of my relatives passed away from PanCan.
Is there “data” on whether Cowden Syndrome affects the liver?
Welp, there wasn’t “data”, per a horrible GI doctor I once saw, that esophageal issues are related to CS. And, yet I was referred to a surgeon discussing a possible esophagectomy.
Can it be December already?