“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?  

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.

 

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?

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

• She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
• Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
• She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
• She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
• Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
• For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

• She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
• Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
• She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
• She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
• Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
• For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!

The biopsy that never was

I’m not sure if you remember my thyroid drama and what’s been unfolding since October 2018.  To briefly recap: I had thyroid cancer in 2003, total thyroidectomy (we thought), RAI 2004, follow up surgery 2006… (finally) got diagnosed with Cowden Syndrome in 2011.  However, last year when I had my usual thyroid ultrasound “something” was found.  Cut to thyroid MRI and 2 fine needle biopsies we still DO NOT know what this “something” is.  Lymph node? Malignancy? I don’t even know what other options it could be; I just know that my doctor still does NOT KNOW what it is.

Friday morning I was set to have my 3rd fine needle biopsy.  Also, I changed insurance in April of this year, which means everything I had scheduled had to be canceled, I had do jump through new hoops to get XYZ approved/authorized, blah blah blah freaking blah.

So, I DID GET an authorization for Friday’s appointment; however, it was “coded” as an office consultation, and not a procedure.  I made more phone calls, wasted more of my time, called everyone and their dog (insurance and clinic) to tell them the authorization needed to be adjusted to reflect what was happening this morning.  Or, rather, what was SUPPOSED to happen this morning.

Of course I called the clinic this week to make sure they had the correct authorization.

“Oh, don’t worry Heather.  We will run it through as an urgent auth. but still come on Friday it will be OK.”

Oh balls.  The clinic should know me by now that I just don’t “come to visits” without making sure everyone has done their job.  I am not getting stuck with some random bill that is not my responsibility to pay.

Sadly, the clinic’s employee didn’t do what he was supposed to do from JULY FREAKING 2nd.  I called then and told him about the incorrect code on the auth. I had received.

This is so dumb I can’t even see straight.  From someone who is living with some very complicated medical conditions, I shouldn’t have to babysit all these people to make sure they do their damn job.

 

Me @ waiting for the biopsy results

Prez of the #TeamNoSleep club

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.

Hashtag PISSED.

What am I waiting for exactly?

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.