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 this was over a week ago?
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.
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?
Any tendencies I had to blush while hopping into my hospital gown are now gone. I will strip naked in front of any nurse or doctor any day of the week. That’s just what Cowden Syndrome and Lhermitte-duclos Disease have given me! Shall I be grateful? Not really. But since I’m kind of a professional patient now there’s no need for me hesitate. I will jump right in to get the business done. No time to waste!
Oh, and by the way, speaking of waste, tomorrow morning I have my next colonoscopy. I don’t like that I am high-risk colon cancer, and in fact I don’t like that I am high-risk any cancer. It’s just what is today. This is almost hour five of me trying to get the prep down. It’s rough. And I mean r o u g h.
Please send me good MOJO in the morning! I really appreciate it.
No one should live in constant fear of a brain tumor growing or one day getting diagnosed with cancer.
No one should. Ever.
However, I do.
My task is now managing fear of the unknown while trying to enjoy the life I’ve been given.
I’ve read different blogs for about 30 minutes this Saturday morning. Trying to understand what I am feeling, or at least distract myself from what I am feeling.
Some mornings I awake and think to myself, “I should write today. There’s so much anxiety coursing through my veins, I need to get it out. I need to cry, scream, rant, process it all here. I am actually quite nervous about my breast MRI next month. I wonder if this will be the day I get the news? Will I hear the “C” word that day?
Then I have my consult for my colonoscopy and EGD this month. My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see. So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them? OH, I CANNOT PAY THEM. That’s right.
And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy. And, I had 2 job interviews these past 2 weeks and didn’t get either job! What gives? Why can’t I catch a break? My life sucks and I cannot get my head above water. I feel like I am drowning, literally. I don’t insist on much. Really. And now, I don’t hope too much either. I’m tired of the stress. When will it end?
Whoa. As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”
Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD. I always tend to wonder, “Is today the day I get diagnosed with cancer?”
I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days. My life now will never not have any medical/doctor type things in it.
I must remember to B R E A T H E through the anxiety….