Much needed update/clarification

I need to clarify something on my previous post. But before I do so, do you remember this post from my early days here? If you have a moment, please do check that link. That doctor was Dr. F., and she was beyond incredible, supportive, and knowledgeable of all things thyroid and beyond. Getting diagnosed with Cowden Syndrome, after 8 years since my ThyCA diagnosis was huge. I am so thankful she was on the road with me.

So, let’s move on to my most recent Endocrinologist, whom I will call Dr. Savage. 🙂 You know, with my hundreds (probably accurate) of various doctors I have seen these past 10 years, there are 4 total who will always be in my heart: my neurosurgeon, my first PCP, Dr. F. and now Dr. Savage. They all deserve an entire blog with thousands of post dedicated to them and their service to ME, their patient. #grateful

Anyways, I posted a few days ago about what Dr. Savage said to me on my last appointment. I didn’t take offense! I was joking in my post actually (with my reaction). I won’t go into it again here about depressed and horrible my mental health was a few months ago. I was in a very dark place, quite scary. Good gracious meds. can be a lifesaver. I begged and pleaded with Dr. Savage to write me an exemption for my job, just in case I need one. Dr. Savage couldn’t/wouldn’t write me one. Also, I won’t go into it here about how much that killed and destroyed me; he knows. Dr. Savage knows. But, regardless if *that issue, I know he cares about me as his now (former) patient.

We did get me a current thyroid ultrasound because you know, Cowden Syndrome and thyroid issues go hand in hand in hand in hand. Dr. Savage told me the scan was “OK”. I don’t ever use normal because CS isn’t normal. He said the tissue, which is *not thyroid tissue, is stable. If I were still his patient he would scan me next December, unless labs come out funky or something before that. The tissue is probably a nodule, and thanks once again to Cowden Syndrome, I did have a multi-nodular goiter that took 5+ hours to remove back in 2003.

Happy New Year to one and all. I pray 2022 we all can see some light. Somewhere. At the end of this hellacious tunnel we are in.

Savage

My Endo is SAVAGE. I walked into our appointment today and first thing he says is, “You’ve gained weight.”

Uhm I knoooooooow this. Kinda due to out of control anxiety due to C 1 9 and how the world has LOST THEIR MIND and how people think they can remove my choice over my body, etc.

But today was hard as I had to say goodbye to him. Changing insurance because money. Life is so weird sometimes. But even more so with 2 Rare Diseases. More soon. 🎄🎁🎅🏻🤶

“Sometimes you have to hurt to heal”

A very dear friend, albeit virtual as of today, just said that to me and she couldn’t be more spot on.  Technology, and social media, when used for good can be just amazing!  I am thankful.

So, I am here today on the blog to write about an experience I just had getting my thyroid ultrasound.  (You know, it’s just bloody crazy that I had thyroid cancer and 2 surgeries and we are *still talking about my thyroid (bed) issues!)

Usually the staff at my hospital, yes most of the staff, know me on a first name basis.  (Not kidding.)  But this technician was new and I hadn’t ever met her before.  She brings me in to the room, tells me the deal (which I have memorized) and begins the exam.  She says to me, “So this is the first follow up you’ve had on your thyroid since 2010, right?”

I almost spit up.

I told her this is not my first rodeo and this specific issue alone (the lone random tissue that we can’t seem to find out what it is) I have been dealing with since October 2018.  She hemmed and hawed, and said something like, “Well, if you’re concerned about it we can go check on the computer.”  I told her that she probably *should go check it out because it does not make sense that all of a sudden the computer/my chart has 9 years of my records missing.

Come to find out, the hospital renamed the test from “Thyroid Ultrasound” to “US Thyroid” or some such nonsense, and she didn’t bother to scroll ALL THE WAY DOWN to the end of my chart.

(In April of this year was my last u/s and there was some “issue” in a lymph node, they thought, and even I know you compare to the most previous scan for comparison.  Can you freaking imagine if she compared today’s to 2010 and then on Thursday my doctor tells me, “Oh Heather, there’s a problem.”

I would have lost my ever-loving mind, I tell you.

I am thankful.  I am grateful.  I am thankful and grateful she randomly mentioned about the “follow up since 2010” comment.  Oh boy, I am thankful.

Yes I know I must be responsible for my own health care, but I sure wish I could trust some of these people in this field.

Fraud. Also TL, DR

I am worthless.

I feel so utterly worthless.  These damn brain tumors have already taken so much from me!  And they continue to chip away at any self-confidence I have left, which is very minimal to say the least.

I wanted to attend a Thyroid Cancer Conference this weekend.  Wanted being the operative word.  It’s 5:15 PM and I just remembered about it now.  It’s over.  I missed Friday’s, and missed all of today’s.  I was in the works of being a moderator for an online support group for people with Thyroid Cancer.  How can I do that when I can’t even remember a stupid thing  like a virtual conference?!

I am a fraud.  A big, freaking, fraud.  Eff you Cowden Syndrome.  And a BIG eff YOU to Lhermitte-duclos Disease too.  You both robbed me of my heart’s desire and you continue, even 9 years later, to make me miserable.

I have mentioned that feeling many times over the last 9 years.  I feel like a fraud:  I may act like I have my crap together.  But, I don’t.  Not at all.  I try to be positive.  No one like a Debbie Downer.  I try to act brave.  But, I am not brave at all.  I am terrified of dying alone.  I am terrified of what my life will look like as my medical status moves forward.

I know it was only virtual.  I know that there are more important things to worry about.  But, as I continue to forget things, it just exacerbates my fear of what my life will be like one day.

What do you do to try to not beat yourself up about things?  

Good evening, or just scratching the surface tonight

Hello friends and family: I know it’s been a hot minute that I have updated!  I wish I could say it’s because my life is going smooth and there’s nothing to update on my medical status.  🙂  Sadly, that’s not the case.  So, here I am.

I often say the reason why I continue this blog is because *here is my safe place to vent.  My few friends don’t want to be burdened with my troubles, as they have their own to deal with.  I should probably start a YouTube channel because then I could safely vent to my heart’s content.  If I am blessed enough to be married one day I sure hope my companion *wants to help ease my burden and isn’t turned off by them.  I am a lot.  Rather, Cowden Syndrome and Lhermitte-duclos Disease and Thyroid Cancer, et al. are a lot.  But, alas that’s for another day.

The last 2 days have had me running around like a chicken with its head cut off.  I spent over an hour yesterday morning on absolutely worthless phone calls.  No one seems to do their damn job and I get drug into the middle of it.  I have a life worth living, and honestly *none of my energy and time should be spent wasted on medical people not doing their damn job.  Why do I have to call so-and-so to find the answer?  Oh, and BTW I called you with the answer and you said I was wrong and I was given wrong information.  And this crap goes on and on.  And, as of this evening, there still isn’t a resolution of what I am supposed to do and how I am to get my blood drawn with this new doctor.  Establishing care with a new doctor is just as bloody hard as when I got diagnosed!

Then today I had O.T. for my trigger finger (thumb) that I had surgery on in August.  Today was my 3rd visit and one of the treatments (electrical something) ended up burning my incision and I have 4 blisters on top of the scar.  Good times.

Guys, this is a lot.

I have been walking a bit more the last few weeks,  but man.  I need a vacation.  (Who doesn’t, right?  Freaking 2020)….who’s up for a road trip to Vegas for the weekend?

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?

Post 1001 or what I remember from my black-out

You know, never in a million zillion years did I ever think I’d have brain tumors, let alone blacking out, hitting my head, and taking a ride in an ambulance! Yet here we are.

This incident was just a few days ago but it seems like yesterday. (A little back story: I have something wrong with my left thumb joint. For the last few months I have been feeling a lot of pain, and I mean a LOT of pain, and a “double-jointedness” on the joint right below my thumbnail. In other words, arthritis. – SIDE NOTE: I am reminded of a story of one of my little nephews. When he was a kid he called his Big Toe his “Thumb Toe”. Isn’t that the sweetest? ❤

Anyway, back to my story: It was around 4 am and I woke up to use the restroom and I always take my thyroid pill around this time. I remember opening the lid with my left hand and I got a shooting pain (I used the word excruciating) in my thumb and the next thing I remember I’m laying flat on my back on my bedroom floor. And I didn’t crumple like a little flower mind you; I hit the floor like a lead brick. I remember somehow getting to my bed and thinking to myself, “I should yell for Mom to come help me.”

The next thing I remember I am in the restroom trying to finish my business and I remember toilet tissue in my hand. Then, I am again crumpled on the floor, the back of my head is killing me, and my Mom is in my face screaming, “Heather! Are you OK? Heather! What happened?”

She said I stood in her bedroom doorway and told her, “Mom, I need your help” and I crumpled onto the floor and she heard the thud of my head against the wall. I’m not going to lie, I’m getting a good amount of anxiety as I am writing this. I want to share this with you and also to document my life today. When I am gone I want others to know how hard I tried, especially my nephews. I want to them to know how much I love them with a love that fills a thousand oceans to infinity. How they give me more joy and the strength to carry on. How hard I tried to be positive and never give up. How hard I tried not to be bitter about my lot in life.

 

I’m always big on dates

Two years ago tomorrow, October 21, 2017, I had bariatric surgery that saved (at least part of) my life.

I’ll get to writing about that very soon.

Finally had the FNA in my thyroid bed a week ago Friday. EIGHT (8!) times my Doc. had to put that bloody needle in my neck. And DIG. A lot.

It was bloody freaking hell and I do not want to ever have another fine needle biopsy again. I accidentally took a bit more Xanax than I should have and the back office staff was kind of freaking out, BUT I HAD TO DO WHAT I HAD TO DO: and my lovely Xanax still wore off after the first needle stick. #sucks

Doc says results should be in in 10 days. I’m not lucky nor a betting woman, but if I were, I would place big money on black that there will yet again be NO diagnosable tissue.

I will let you know as soon as I do!