“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?

Checking in

Hey friends:  I am still here! It’s been a while, and thought I’d catch up quickly this evening.

  • I had “surgery” on my thumb this week.  5 stitches for my trigger finger.  Blergh.  Not fun in the least little bit.
  • I had my mammo last week, because you know, Cowden Syndrome and high-risk breast cancer risk.  It was “normal”!  #winning
  • Since I just got my mammo I can now try to sort out my screening timeline again since Corona jacked *everything up.  Basically, someone is getting to second base with me every 3 months.
  • What are you watching lately?  I am a relatively new fan of BB (Go Ian!) and have been watching since #BB16.  Still into every single version of #90DayFiance, and just finished another Joe Exotic thing.  I liked this one the most as it followed up on some of the Big Cats Joe abused.  I am now a follower and newest sponsor of one of their residents.  Check out the sanctuary here!
  • Trying my hardest to keep my hope and head above water.  How are you doing in the time of Corona?

 

Life goes on, as painful as it may be

I am still trying to navigate this grief.  Not doing super well, tbh.

Reading sometimes help to distract myself.

Taking and editing photos sometimes helps as well.  Visit me at @ZHeatherChamp to see!

Cowden Syndrome doesn’t stop for anything; and I continue to schedule and manage medical appointments in the midst of 2020.  🙂  Thank goodness for planners!

Please tell me how you are doing?

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?

Cowden Syndrome doesn’t stop for Covid19

I have thought about this for the last little while. I can’t begin to imagine how amazing this would feel! Everything (almost) is shut down, so why can’t my PTEN mutation be as well? (Insert sarcasm)…

I had to go outside today. Besides wanting the basics of some much needed Vitamin D, I had to see a doctor for my clinical breast exam. You might be wondering why I just don’t do it myself? I will leave that to another post. 🙂 This is how it’s been done since 2011 and it works for me. Every 3 months something is happening with my l a d i e s. Either a mammogram, MRI, or clinical breast exam. And, on the rare occasion a breast ultrasound.

Got my mask and ventured out this morning. Yay!

Even if I wanted to hole up under my covers due to Covid19, Cowden Syndrome won’t let me. So, I g u e s s that is at least 1 thing positive right now.

.

.

.

What are you doing during this downtime? Any fiction books or Netflix documentaries you could recommend?

Help

I really don’t think I have had any problems in asking for help.

Before diagnosis, that is.

I distinctly remember a moment in time December 2011. This was just 5 months after having 2 brain surgeries and also getting diagnosed with Cowden Syndrome. I wasn’t in therapy at that time either.

I was in my mom’s bedroom, and we were discussing something, that which I can’t remember. But I do remember this: Experiencing the most intense panic and fear and anxiety where I felt I was going to die. Literally die. Now, I had that terror right before being wheeled in to the OR on July 27, 2011. That I would not wake up.

But back to that day in December.

I knew I needed help.

And, I asked for help and received it.

#gratitude