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.

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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

Quarantine Thoughts

I don’t have anything witty to write now. As I’m sure you’ve read numerous times: We are living in unprecedented times. There is no doubt of this.

I could list all the Netflix documentaries and the app exclusives for 90 Day Fiance on TLC I have watched. But, I want to think about this moment in history differently.

Yes, my specialist doctor appointments have been canceled postponed. I expected as much, but I do have a wellness checkup (my term) with my new PCP in a couple of weeks. I was am concerned about this appointment being canceled, although I was reassured this week that it would not be. If you’re new here, I used to have an oncologist who managed all my screenings for Cowden Syndrome. Yet with new insurance I had to see another one, and I wrote about that in a previous post because it was an absolute travesty when I saw the “new” one. (You can read about it here.)

Anyway, I have to manage all this medical stuff now since I have no oncologist to help me, and what’s next on the agenda is a breast exam. While my medical status overwhelms me on most days of the week; I am so happy to realize that I haven’t freaked out about anything health related since this event began.

This makes me really happy. Happy to write it and happy to acknowledge it. 🙂

New! New! New!

Hi friends and family:

I pray you are safe and well. I have been feeling stagnant this week so I decided to create some new merch, with the help of a social media friend! I will find her website and link it here. 🙂

Please click here to check out my new shirt! I am so excited to share it with you. If you’re able to, during the unprecedented time we are living in, please consider buying a shirt. It will help me in many ways. Thank you!

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!

Rare Disease Days of Yore

LOL, I don’t know. 🙂

So, what was it about this RDD that was different? Why didn’t I feel as empowered as years past? Why didn’t I find something to do? Like in 2015 when I organized a fundraiser at a local gym? Gosh, I wish I knew. I don’t want to lose any steam ever on being a voice for Cowden Syndrome and Lhermitte-duclos Disease. But what gives? I really need to try to figure that out.

I have a hunch but will do some deeper pondering about it.

Yesterday I spent a very lazy day at home. My family was here, and we were watching old VHS movies from my high school days (very surreal!). I found myself just doing what I could to stay present. Remembering what I could from high school. Seeing and hearing my Dad on a video was such a shock and joyful moment at once. (He’s passed away)…

Even as I am writing this, I realize (finally?) that any day can be Rare Disease Day and I have the control! I suppose one of the things I am grateful for oddly enough post-diagnosis is that I have found my voice to advocate for myself. I never knew I needed it; but here we are and I CAN DO IT.

I didn’t think about anything health-related yesterday which is pretty damn awesome in my book. No brain surgery or hysterectomy memories, no “day-dreaming” of what my life will never be.

I just was.

With my family.

Safe.

And, I guess I couldn’t hope for much more than that.

Happy Sunday to you and yours.