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. 🙂

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!

Daily Prompt [Disrupt]

My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling.  Trying to find my balance and inner strength.

I am so very thankful to have gotten through these last few months relatively unscathed.  🙂  The EGD and colonoscopy was rough, but completed.  And then breast MRI was “easier” than I remembered!  The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it. 

Also, I haven’t received a telephone call from my oncologist.  I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.

Today I have errands to run, appointments to complete, and blood to be drawn from my arm.  I best get going and I hope you all have a great day today!

Daily Prompt [Suddenly]

There are about 18 different directions I could take this prompt.  However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?

If we go back to the beginning, see this post about what led me here.  (Boy, I just took a few minutes and re-read those posts from the early dark days.  My anxiety is full-bore right now…I am so thankful that time of my life is over.)

Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also.  It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two.  HAHA.

Yet, life doesn’t roll like that for me.  I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry.  This month I have a lot of medical procedures and I am already nervous about them.  I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week.  I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.

Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again.  I tell the doctors every time that I need to be sedated before going in.  Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under.  And that sucks eggs.  Bad.  I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in.  He got it!  Please keep your fingers crossed that it will be smooth sailing.  🙂

I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.

The last week of March I have the breast MRI.  I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.

My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease?  What’s Cowden Syndrome?  What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it.  I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.  

 

Daily Prompt [Insist]

I’ve read different blogs for about 30 minutes this Saturday morning.  Trying to understand what I am feeling, or at least distract myself from what I am feeling.

Some mornings I awake and think to myself, “I should write today.  There’s so much anxiety coursing through my veins, I need to get it out.  I need to cry, scream, rant, process it all here.  I am actually quite nervous about my breast MRI next month.  I wonder if this will be the day I get the news?  Will I hear the “C” word that day?

Then I have my consult for my colonoscopy and EGD this month.  My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see.  So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them?  OH, I CANNOT PAY THEM.  That’s right.

And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy.  And, I had 2 job interviews these past 2 weeks and didn’t get either job!  What gives?  Why can’t I catch a break?  My life sucks and I cannot get my head above water.  I feel like I am drowning, literally.  I don’t insist on much.  Really.  And now, I don’t hope too much either.  I’m tired of the stress. When will it end?

Whoa.  As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”

Daily Prompt [Tend]

Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD.  I always tend to wonder, “Is today the day I get diagnosed with cancer?”

I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days.  My life now will never not have any medical/doctor type things in it.

I must remember to B R E A T H E through the anxiety….

Cowden Syndrome never sleeps. Kinda like me!

Today was my oncology appointment. Gah.

I had a few months of “quiet” but that’s now over. The breast MRI, colonoscopy, and EGD are next up to bat.

I’ve come this far, but man I’ll tell ya…it’s so much. I’ve always battled generalized anxiety, but when things come at me fast like this, my anxiety is running full speed at 150%.

Praying for sleep tonight.

Never say never

I’m having surgery tomorrow.

You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery.  Never ever.

And, yet here we are.

For the record, thankfully it’s not on my brain or my breasts.

It’s time to say goodbye to my gallbladder.

 

Catch you on the flip side friends!

“So what are we doing today?”

“What brings you in today?  I know we just saw you in March.”

W E L P …

I met a very nice hospital employee this morning.  I am finding more often I am getting nice ones, which is a huge deal!  When you have to interact with a sucky medical employee it’s such a freaking drag!

As I was in the exam room, I began my story:

  • PTEN mutation
  • Breast Cancer risk
  • Similar to BRCA mutation
  • Brain tumors
  • Surgeries

And the list goes on. I kind of have my “go-to” story when I meet new medical professionals.  She was friendly, and I could tell she has been around the block (but I don’t mean that at all in a negative way).  She says to me, “I have been around over 20 years and I’ve never heard of PTEN mutation.”

GAH THIS IS SO WRONG PEOPLE!

She was nice to let me rant a few minutes about how irritated I am that “everyone” seems to know of BRCA mutation, but no one does of PTEN and it’s JUST AS SERIOUS AS BRCA!  (I would like to add here though that any medical condition that causes a woman to be at high-risk for breast cancer  is serious, whether it is a 10% lifetime chance or 88% lifetime chance.  But, anyway…)

I made it through the appointment with flying colors (haha) and then got dressed and went along my way.  As I was going to my car our entire conversation really struck me:  How thankful lucky I am to have been diagnosed as quickly as I was.  Can you imagine if I had Cowden Syndrome and yet didn’t know about it yet?  Regardless of zero family history of cancer.  What about all these women who are getting tested for BRCA mutation and yet PTEN mutation is conveniently being left off?  I really feel that Cowden Syndrome really isn’t as rare as the numbers say, and that is paralyzing for those who have it yet either aren’t diagnosed with it, or are diagnosed later than they should be, or have had multiple cancers (breast, thyroid for example) and that is not coming up on anyone’s radar?

Gosh, I could go on and on about this of course.  My hope and prayer that at least one person will be educated about PTEN mutations via either my story, or another’s who has found their voice to shout!  (NOTE:  the employee did say, “Thank you for educating me about that” which was really nice.  Those types of conversations really give me strength to keep writing, because validation.)

PS:  Please visit my link and consider supporting if you can.  Every bit helps!  ❤ Thank you.  Let’s all bring awareness for PTEN mutations.