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.

 

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.

I don’t think there are false alarms in Cowden Syndrome.

But who knows, maybe?

In continuing from yesterday’s appointment, I also have elevated liver enzymes.

…<breathe>…

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!  ❤