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!

Life = change = life

Ugh.  I saw my new primary doctor yesterday.  Such a surreal experience.  Of course I know that my original doctors (since diagnosis) can’t be with me forever but waaahhh.  I miss my olddddd doctor.  She knew me.  It was easy.  And, to be honest, in stating my history for this doctor I didn’t quite realize how much of a hot mess I actually am.  🙂 I am a lot.

Currently, I don’t have an oncologist which really sucks balls.  My previous oncologist took the burden from my shoulders and was responsible for managing all of my procedures: mainly coordinating my colonoscopies, kidney scans, etc.  But since I have different insurance now (which also sucks eggs terribly, but that’s for another post) the “powers-that-be” will not authorize an oncologist because “I do not have cancer”.  Welp, hey folks let me tell you something:  I’m not trying to get cancer so can you get on board to help me CATCH it before it strikes?!

Waiting to hear about my EEG from a few weeks ago.  Just followed up with the Neuro so we’ll see.  I have learned that not hearing from the doctor, or the whole “no news is good news thing” doesn’t apply all the time with Cowden Syndrome and Lhermitte-duclos Disease.

I know things take time.  Blah blah. I get it.

It’s just a lot.  It’s a whole dang lot and I’m not sure how I’m doing it.

How are you, though?  Read any good books lately?  🙂  I’d love some recommendations.

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PS. Don’t forget to follow me on Instagram!

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.

Connect the dots

Sometimes, it’s fun to look back at from where I came.  My real medical life began in 2003 when I got diagnosed with thyroid cancer.  I hadn’t really been all that sick prior to that.  Little things here and there, had my tonsils removed when I was 19, that’s about it.

Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev.  Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!

I saw the endocrinologist this week.  With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good.  I’ve had better (see previous sentence) and I have seen much worse.

People can’t seem to leave my TSH alone.  It’s either too high; too low; too whatever and we have to worry about blah blah blah.  I just KNOW how I feel when my TSH is a certain number.  Can’t you all leave me alone?  (NOTE:  Mild sarcasm.  I get it.)

I saw Dr. Endo this week.  He loves my TSH at 1. something.  I hate it.

I love my TSH around .10 or .20.  But, he doesn’t.

Anyway, more blood work.  Checking of my T3 or T4 or something.  I don’t know.  Then, I see Dr. Oncologist in the next weeks to check The Ladies.  

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What’s new with you?  🙂

Face the music

Sometimes, I don’t care for Cowden Syndrome.  I don’t care to face all the organ stuff that comes with it, you know?  Well, actually…I never care for Cowden Syndrome, except that it’s connected with me some amazing warriors who know what this life is like.  Sometimes, I just want to stay in the bed with the covers over my head and wish for unicorns and rainbows.

So this morning…that’s what I did.  Missed church and everything (awful – I know).  But, my body and mind were calling for it.  I don’t want to go to the surgical oncologist tomorrow and hear the words, “Esophagus, cancer, resection, polyps”, etc.

I don’t know how to end this post tonight; I’m scared of what my future holds with Cowden Syndrome and I’m scared about tomorrow.  I try to be positive most days, but tonight I’m on my pity pot and that’s where I’ll be ’till tomorrow, if you need me.

THE week

Some  weeks are Cowden Syndrome and Lhermitte-duclos-free.  Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal.  I think it is a tad easier to accept these things that I do not like.  Maybe I’m getting tired?  Or stronger?  Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on?  (Volunteering at the animal shelter?)

I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least.  Suffice to say I didn’t get the scan as I needed to.  So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”.  (Quotes added but inferred by both she and I.)  Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound.  Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun.  But, we’ll see.  We will see.  Whatever it is it is.  I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things.  I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely.  THAT, I get.  And, I’m thankful for.  Doesn’t make it any easier, it just is what it is.  Does this sound like growth?  HA!

Friday I have a brain scan and then the appointment with the oncologist.  I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing.  But I have noticed something that is concerning, but nothing I can do about this either:  I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big.  Getting the information out of my brain in one direction is OK.  But what HAS been a problem as of late is when I have to do that in several steps.  Meaning:  When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard.  Frustrating, difficult, confusing, not easy.  And, plain ‘ole not fun.  I noticed this last month when I was at church.  I powered through, because there is no other option, but man it was harder than I wanted it to be!

Isn’t that how most of feel at times about life?  That it is harder than we want it to be?  Sure, I don’t want brain tumors and high breast cancer risks.  I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂  But, I’m not.  I’m navigating slowly this rare disease life.  It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have.  I wouldn’t have this blog, either.  I realized that’s kind of a big deal, too.

You know it’s a bad thing when…

the anesthesiologist gets called to do your sedation for the colonoscopy.

I SWORE that this time would be different.  I SWORE that I was going to get the hospital calm, relaxed, and meditative.  WHY WASN’T TODAY different?!  Every procedure/surgery I have had has been laced with drama, tears, incompetent staff, rude doctors, etc.  TODAY WAS SUPPOSED TO BE DIFFERENT!

Two years ago I had an EGD and colonoscopy.  Since I just been diagnosed with Cowden Syndrome the year before, I needed some baseline tests.  I hoped that today would be like last time.  Meaning, since I had 3 polyps last year and some were found via the EGD, and in after talking to both my oncologist and primary doctor, I was under the impression that I would have BOTH procedures this morning.  BOTH.

Now, this post talks a bit about what happened a few weeks ago.  Why did I assume that all would be OK today?  Was I supposed to call the GI Clinic to confirm the EGD when Dr. L and Dr. B both doctors confirmed for me?  No.  I shouldn’t have to do that.  I shouldn’t have to micro-manage all these people in all these clinics to do their freaking job.  It’s hard enough for me to manage what little control I have over my own  life.  It should be crystal clear why I have control issues!  This is MY LIFE.  MY BODY.  I expect these people to do their job.  Period.  And, when it comes at the expense of me, or my wasted time, I DO NOT CARE FOR THIS ONE BIT.

Mom and I get to the clinic:

NURSE 1:  “What are you having done today?”

ME:  “EGD and Colonoscopy.”

NURSE 1:  Looks at paperwork, “Ummmmm…..”

Cue ALL THE WORLD COMING TO A HALT HERE!

I lost it.  I literally and absolutely came unglued.  All over their place.  (My Blood Pressure was 145/110).  I can’t begin to express how angry I was!  Why wasn’t the EGD scheduled?  “Because they didn’t authorize it.”

WHO THE EFF IS “THEY”?!?!?!?!?

It was the GI Clinic’s fault.  But, oh remember when I talked to both doctors on my team and they said I was to have it?!  I was so pissed off.  I was cussing.  I was making a scene.  I called the oncologist’s office while I was in the bathroom after getting checked in.  THIS ISN’T OK!  My time is important.  My voice is important.  Sure, I don’t have to do the prep for the EGD but that doesn’t matter!  No one is accountable for giving me wrong information!  Every clinic was throwing the OTHER clinic under the bus.  Oncology was blaming GI, and GI was blaming oncology.  I even had names of people to talk to and that still didn’t matter.  THIS IS NOT RIGHT.  I’m still ticked off as I am writing this.

Since I am “having symptoms” and 2 years ago I had polyps, I want to know how things are now with me.  I don’t give a flying EFF that this random GI doctor says “the data doesn’t support needing an EGD.”  Didn’t my oncologist call for one?  No one can answer. NO ONE WAS WILLING TO ANSWER OR HELP ME.

Back to this morning:  My BP hasn’t lowered, and my mom convinced me that I had to do this regardless.  No one at the hospital was going to magically help me (what a freaking surprise) and allow the EGD at the same time as the colonoscopy.  When I got into the bed area, changed, and I was still yelling.  My poor mom was trying so hard to comfort and calm me down, I feel bad I embarrassed her.  But, I think she understands my frustration.  I can’t trust anyone to do their job!  THIS is what gives me anxiety. 

I think today was NURSE 1’s first day on the job (at least when it comes to IV’s.)  When I told her that I may be a hard stick, she said, “Oh no, don’t tell me that.”  And she wasn’t joking.  She was serious.  By the way, no one should have joked with me anyway at this point in my morning.  My head is spinning, and all I am thinking about is, “They better not have to do the IV in my hand.  I cannot take that.”  Another nurse comes in.  My mom is rubbing my shoulder.  I hear NURSE 1 say something else that did not help to bolster my confidence in her.  Then, I feel something wet on my arm.

DONE.  I am done.  DONE DONE DONE DONE DONE.

I really had a panic attack.  Not pretty friends.  I hope you don’t judge me.  I am not strong.  I am very weak when it comes to this stuff.  And, I went right back to the bad place and the brain surgeries and that drama.  Then, I went to the chaos with right before the hysterectomy.  All in about 3.5 seconds.  😦  I think my mom was afraid I was in pain.  I don’t think any of the nurses cared.  In fact, I’m mad about that, too.

Nurse 2 or 3 says that she is calling up an anesthesiologist to do the sedation since I am so upset and that doctor can give more than nurses can.  OK, I’m fine with that.  And, it just so happens I passed this doctor it the hallway on the way to the GI Lab minutes earlier.  I recognized her but she didn’t recognize me.  🙂

GI room.  Doctor.  Assistants.  No one told me when they gave me the sedation.  Then, I woke up.

Needless to say, when I got home I started the calls about the EGD.  That is when all the bus-throwing started.

Oncology Office, “GI Lab said you were to have EGD.  We didn’t know you weren’t having it until you just called us.  We talked to X at the GI clinic.” 

GI Office, “Don’t know what oncology is telling you. Don’t know what system they were looking at.  Dr. G (GI doctor who has never seen me before) said you didn’t need EGD so one wasn’t ordered.  We didn’t tell anyone at oncology anything.”

AND – my primary doctor even looked at this “phantom” system and told me the same thing.

What am I supposed to do?  Do you get what I am dealing with here? The level of my frustration? The amount of incompetency by someone, somewhere?  My hunch is it’s all GI’s fault. They messed up.  They dropped the ball.  All because of this random Dr. G (who hadn’t ever seen me before September, so he knows nothing about me or my history).  AND, he better be glad I don’t remember him or what he looks like, because if I saw him somewhere I would give him a piece of my mind.  I AM THE PATIENT.  I AM THE PERSON LIVING WITH COWDEN SYNDROME.  You may or may not have read about this rare disease in a book, or seen “one of us” in school.  But, if you don’t know me or my medical team, I don’t give a crap about you or your opinion.

Organize thyself

Dear Yetta Francine**:

How are you?  I am sorry it’s taken me so long to write.  I’m not sure what’s going on; as you know, normally I love to write as this is such an outlet.  Nonetheless, I have been blocked in writing.  I know I need to catch you up on so many things, so I am going to do my best here.  Thanks for being patient.  And, above all, thank you for being here for me.  It means more to me that you’ll ever know.

Instagram:  You’ll never guess what happened?  You know how I love Instagram and post pictures about my life with Cowden Syndrome and Lhermitte-duclos Disease? A few months ago someone commented on one of my doctor pictures and she said she has CS too.  After some commenting back and forth, come to find out SHE LIVES 5 TOWNS AWAY FROM ME!  Can you believe that?  If anyone had told me 3 years ago that I would be connecting with ANYONE who has Cowden Syndrome, let alone someone so close, I would have laughed in their face. However, in hindsight, I sure would have appreciated that information back then because it might have done wonders to help ease my anxiety and despair then.  (Granted, the despair has lifted, thankfully.)

Next medical thing:  I am having my next colonoscopy on the 24th.  Did I ever share this with you from a few years ago?  I am glad I wrote that because I will need to check it again before next week.  I can’t believe it’s next week!  I remember the discussion in 2012 about when to have the next one.  That’s the thing about having such a large medical team.  One doctor suggests “X”, while another suggests “Y, Z, and then a.”  Positives and negatives on both.  Anyway, it ended up being 2 years that I needed another one, because while I wasn’t diagnosed with cancer then, I did have 3 polyps, which no one ever wants.  When I saw the GI doctor last month, he didn’t think I needed to have an EGD this time.  That was news to me, as I was expecting to have both procedures just like last time. I told him that I had a polyp in my esophagus (or somewhere, that came up via the EGD) and for my peace of mind I want to know if there are any more this time.  We went round and round, he said he had seen a person with Cowden Syndrome during his residency, blah blah blah, but I didn’t need an EGD.  WHY THE CRAP NOT?!  I started to get angry here.  My voice has value and meaning. When someone doesn’t listen to me, especially when it comes to MY health and MY body, I really get mad.  He wasn’t going to budge so I told him that I would check with Dr. L (oncologist who schedules all my screenings and scans, except for my brain).  I called Dr. L’s office and left a message with one of the assistants and waited for a call back.

Well, that call never came.  Of course.  So, last Monday I called the oncology office.  Spoke with D (I won’t throw her under the bus here) and said why I was calling. Gave her all my info, and was under the impression she would leave a message for the assistant and all was on track.  Right before our call was finished she put me on hold for about 10 seconds, then came back and said, “Oh.  For your this issue you need to talk to your Primary.”

ME:  “Why?”

D:  “Well Dr. L handles your cancer treatments so you need to contact your Primary.”

ME:  “I don’t have cancer.  Dr. L handles all my screenings.  I have a rare disease and Dr. L is very aware of this.”

D:  “Well, I talked to the head nurse and that is what she said.”

ME:   “WHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY.”

D:  “Because you need to talk to your Primary.”

AND SHE REFUSED TO LET ME LEAVE A MESSAGE FOR MY DOCTOR.  The doctor I have seen since 2011.  The oncologist.  I wasn’t able to leave a message for her.  I about lost my marbles.

I called a contact of mine at my Primary’s office and unloaded on her.  I cried and just about lost my noodle.  My friend A is so amazing, so kind, so wonderful (if you read this A – I so appreciate you!) and she said she’d pass the message to my Primary and maybe she and Dr. L would talk (again) and I decided I just need to let this go.  For now.

Tuesday morning my Primary doctor called, she looked in this system and told me that I was scheduled for the EGD.

WHUT?!

My Primary didn’t do anything, she didn’t make any calls, she just read to me what was already in the system.  Urg.  You have GOT to be kidding me.  I know Yetta.  I know this is a big mess and I should have just let it go.  But I couldn’t.  I didn’t.  D and the “Head Nurse” (what a joke) MUST be held accountable for what they did.  Or, at least have me THINK they are being held accountable.  I called the supervisor at the office, and I swear, she sounded about 14 years old.  I told her everything, and she said she’d “Get back to me.”  She did the next day, and said that D was “so sorry that happened and next time I would be allowed to leave a message for the doctor.”  I said, “Well yeah.  I should always have been able to do that.”  And then we went round and round about the “Head Nurse”, C.  She lied to the supervisor, I know flat out she did.  And I told her that.  She wasn’t going to budge either about “procedures or protocol” and she’d have the nurse call me directly to talk about that.  DO YOU KNOW I AM STILL WAITING FOR THAT CALL?!  Then, here’s the kicker: A couple of days later I get a call from a different nurse, the triage nurse. She says she is calling to me to make sure I knew about the EGD and Dr. L wanted to make sure I knew.

ARE YOU EFFING KIDDING ME WITH THIS?

I’m done.  I wish that I could be done with that office, but I cannot.  It is what it is. But this triage nurse was very helpful and I am just going to call her in the future for everything.  So, I am a bit nervous about the procedure.  After all that.  I won’t lie.  And, I suppose that the nervousness (I am only calling it that) won’t ever subside.  It’s just part of my life.

You know Yetta, we are all busy. I am sure you are busy too.  We all have lives.  But, part of why I feel so overwhelmed is that if I drop the ball on something, it’s only me that will be affected and what if it turns to something medically serious?  Does that make sense?  So much responsibility and so much weight on my shoulders, that it’s suffocating.  The physical pain is getting worse too.  Not from the stress, I don’t think, but from the brain tumors affecting my balance.  Have I ever told you about the Spoon Theory?  Please give it a read when you have some time.  It is pretty great and pretty right on.

Juicing:  A friend gave me a juicer a few weeks ago.  I am so thankful and so excited!  I’m sure you have heard of the Gerson Therapy, or Fat, Sick and Nearly Dead.  A different friend juiced for 40 days and lost 23 pounds!  My goal is to juice 1 meal a day, or at least breakfast when I am home.  Every time I do that I put a sticker on my calendar.  🙂  If you check my Instagram account you’ll see some pictures of my recent drinks.  My favorite juice is with apple, carrot, and celery.  Once I get going on juicing at least one meal daily, then I will probably start to 2 meals, and so on.  My favorite mantra is “Celery All The Things!”  🙂

There’s quite a bit more I want to catch you up on.  I haven’t acclimated very well to “living in the world with Cowden Syndrome and Lhermitte-duclos Disease”, and to the title of this letter (post) I need to make some big organization changes in my personal life.  I’m not sure how to do that so if you have any suggestions, please send them my way.  There’s some more I want to update you on, about my expectations (how I am working on letting those go) and about a comment that someone told me (about 7 years ago) that has triggered some stuff lately.  Also, do you know of a way to manage chronic physical pain?  Anyway, I’ll get to it soon, I promise. It all ties in to chronic diseases and managing them in life.  I suck at it, apparently.

I hope you are doing well.  Please write soon.

Love, Heather

 

 

 

**Yetta Franice was my Cabbage Patch Doll’s name when I was a child.