Mid-October?

Wow.  I can’t believe this month is already 1/2 over!  That’s so crazy.

I was looking at my calendar this morning and was a bit overwhelmed with all I have going on:

  1. Colonoscopy and EGD
  2. New therapist appointment
  3. Endocrinologist appointment the end of the month
  4. I had 2 different Neurology appointments scheduled, and they both fell through.  (It’s mildly concerning to me since I am living with 2 brain tumors and have had 2 craniotomies.  But, I digress.  For another post.)

I guess my point is that I’ve been forced to learn how to advocate for my health.  And, that’s one of my biggest takeaways since diagnosis of the brain tumors.  I get to share my experiences with you, and hopefully at least 1 thing I’ve experienced these last 5 years may be of some help to you.  To someone.  Somewhere.  That helps me feel that none of my medical experiences have been for naught.

I could tell you horror stories, and rest assured, I will continue to share them.  (Gross negligence of privacy issues to start.)

But, not tonight.  I am still traumatized from the colonoscopy and EGD last week.  I’m still irate for not being able to see a neurologist.  However, the main thing is even though I must endure numerous screenings and procedures (and those aren’t going away any time soon), I will not tolerate unacceptable behavior.  I will not waste my time waiting in exam rooms for doctors who don’t listen to me.  This is my life, this is my health; if you’re not meeting my medical needs, I refuse to endure and I will move on.

I never would have done that in my previous life.  I would have just gone along with things, because I had to.  Well, you know what?  I don’t have to do anything.  I don’t have to do anything I don’t want to do.  Has the diagnosis of Cowden Syndrome and Lhermitte-duclos Disease made me stronger?

Hmmm….

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(Thankful)

I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.

I’m not a good housekeeper, apparently

  1. I haven’t forgotten about Fun Fact Friday.  Just haven’t had any fun Fridays lately to write about.
  2. I DID NOT HAVE ANY POLYPS THIS LAST COLONOSCOPY!  In all my anger about not having the endoscopy I forgot to mention that GREAT news.
  3. I love to do genealogy.  After church today I spent 3.5 hours in front of my computer.  Doing it all.  I couldn’t get up from the computer.  It was if I was literally pulled to it.  AND, I found 2 of my mom’s ancestors that WE DID NOT KNOW ABOUT.  This tells me something, big time, about how much our ancestors want to be found.  Maybe in another post I’ll write about it.
  4. Here is a quick update I did on my GoFundMe page just now.  I love social media in all forms, and there are different audiences in each that I can reach.  Awareness; advocacy.  It’s all the same to me. It’s about getting rare disease stuff out there.  To the people.
  5. More on this post title:  It was play on words about “Housekeeping” on my blog.  As in a quick catch up.  In other news, I’m not going to post a picture of my room.  You’d see that “Bad Housekeeper” is written in my room, 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.

 

 

Girl with frustration and fear

I don’t know about you, but (sometimes) when bad things happen to me my first instinct is to think, “Who’s fault is this?  Who is to blame?  Who did this to me?  Why?  Why did this happen?”  These aren’t pleasant thoughts (obviously), but I am human and imperfect and I have a lot on my plate to deal with.  And, these are the thoughts I struggled with all day yesterday.  So, when I see that my thoughts are going a bit wonky I know that is the best time for me to sit and write.

Yesterday I found out some less-than-good news.  I don’t have Medicaid.

The transition from the local medical coverage I had to Medicaid was supposed to be seamless.  This previous coverage carried me through 2 brain surgeries and countless ultrasounds and even a colonoscopy, for this I am very thankful.  I knew that with Obamacare starting (or whatever you choose to call it) there would be problems for me.  Many problems.  That is why I chose to have the hysterectomy last month, under the previous coverage.  Because I was freaking out about what January 2014 was going to be like.

Cut to January 2014.  Here I am.  I am living it.

Around October of last year I received some paperwork that said I was denied Medicaid coverage.  When I called about it the case worker told me it was just a formality.  Of course I was denied because I had the other coverage.  “Don’t worry Heather.  All is OK.  It will be fine.” I was assured.  Silly me.  I believed them.

As I looked at my planner for January (there are 5 appointments with my “team” this month) it dawned on me that I had not received the new insurance card yet.  I knew that I needed this card before the appointments and procedure (and before I see the surgeon again to release me back to work), so I called Medicaid Customer Service yesterday.  After waiting on hold for 1 hour and 48 minutes, I talked to a guy who told me the stellar news:

I did not have any medical coverage.

You know that paperwork I received in October?  Yeah.

Do you realize the weight of that statement?  Do you realize how scary this is for me?  I have a freaking brain tumor and genetic condition.  2 rare diseases.  There’s nothing for me as of today.  Am I now a statistic? One of those people who will lose everything (not that I have anything to lose besides my DVD’s and a few of my Dooney & Bourke bags), but COME ON!  This is serious!  This isn’t funny and this is not a joke. This is real life. This is my life.  What am I supposed to do with this?!

20130920-202343.jpg

Pic from the Global Genes Patient Summit 2013

As I talked with the Customer Service guy (and choked back tears) he created a live application for me (I didn’t quite understand it all. He just mentioned yesterday’s date a lot and that things would be retroactive to the first of the month if I get approved.)  Did you catch that though?  IF I get approved.  IF.  There’s a lot behind the word “IF”.

1if

conjunction \ˈif, əf\

—used to talk about the result or effect of something that may happen or be true

So.  Affordable Care Act?  Thought you couldn’t risk being denied?  I do not understand it all.  And yesterday, my mind was spinning.  I felt sick.  My neurosurgeon appointment; oncologist appointment; surgeon appointment; endocrinology appointment; and I had a thyroid ultrasound scheduled for Friday but I did end up rescheduling that to February.  On top of all that, I was due for my breast MRI in December but had to delay that due to the hysterectomy.

Whew.  My heart is starting to beat faster even as I type this today.  😦  I don’t do uncomfortable well and right now I am very uncomfortable with all these unknowns.

As this was all happening yesterday and I did all I could to keep my thoughts calm and positive, I kept thinking to myself, “OK, self.  You need to do all you can right now.  Exhaust all your possible resources in your favor.”  I called my surgeon and my primary doctor and left messages for them.  I will ask them if they will write a letter on my behalf that I will send with the further application that will come by mail in a few days.  I don’t know if it will make any difference but who knows.  Maybe it will.  I can hope.  Sometimes, my hope falters though.  Evidently here is an object lesson for me to put hope into practice.

Gag. Me.

I had a doctor marathon today.  3 appointments and I’m glad I got them done.  One was a procedure to check my thyroid…as I have this dang piece of thyroid tissue (lymph node?) that shouldn’t still be there.  Er, well we don’t really know what it is.  Or, I don’t know.  But we thought it was remaining thyroid tissue years ago and that was why I had the 2nd thyroid surgery in 2006 but then I was never quite clear if the surgeon got it.  Anyways.  My tonsils are (kinda) growing back.  Tonsil tag.  Have you heard of it?  Not to be confused with tonsil hockey.  And not like anyone wants to play it with me anymore since I don’t have them.  But Cowden’s is all about overgrowth (hyperplasia) and that’s why I have these scans to make sure the remaining tissue stays stable.  I’m not sure what would be the next step if it began to grow back too.  Because I’m not down for another surgery.  ESPECIALLY since I’m kicking out my uterus.  And maybe my Dairy Queens…

Although this was a different technician and hospital where I had it done, [I sure hope that has something to do with it] it seems the measurements of said tissue are bigger than at last scan.

Gag. Me.

Some of you may know I’m in the “gathering phase” [as I call it] about what in the world I’m going to do about my Dairy Queens.  One of my friends says, “NO NO NO NO NO” – as I have no way of knowing IF I will get cancer.  IF I do…then deal with it at that point.

OK, I’m on board with that. 

But at the oncology appointment today I got some clarification on what will happen for me when I reach 50-55 years old.  Right now I’m being screened pretty thoroughly with mammograms and breast MRI’s alternating every 6 months.  When I get to 55 ish, the breast MRI’s will stop and I’ll just have the mammograms.  The reason that doesn’t sit will with me now is that is how “regular” women get screened.  Dr. Mom doesn’t have CS and she gets yearly mammograms.  So what will be done for me since I’m high-risk IN PLACE of the breast MRI’s?  The MRI’s now are done since I’m younger and there’s more estrogen in my body (or something like that).  If I decided to just play the odds (which I USED to think I had good luck but with the type of brain tumor that makes up less than 1% of all brain tumors or some such thing, maybe I better hedge on what I KNOW)…then what happens when I get to 55 ish?  Of course I’ll know my Dairy Queens quite well as I will have felt them up for the last 15 years.  But that’s a lot of pressure for me.  A LOT.

You know?

And then also there’s the decision about my uterus.  Gag. Me. AGAIN.  This isn’t even really Cowden’s related but yet it will be an added bonus to have it go.  I’ll get into that more later.  And I will need to write about my colonoscopy and the pathology and I’ll get to that.

Right now I just have to get through the hysterectomy pill and then next will be the PBM.  Or will it?  I don’t know.  How do I make this decision?  It’s one less thing to worry about, sure.  But I’m thinking about…what about the new changes to technology and maybe in 10 years there will be another way for women who are high-risk for breast cancer to get screened?  Like I told Dr. Mom and Dr. B recently, I think this decision would be “easier” to make more QUICKLY if I had family history.  But as I was talking to my dermatologist today – he understood but then he said, “Yeah but your genes are different.”

Gag. Me.

Here’s some light reading…

Errr, wait.

In my research I came across this article from 2000.  To me it reads like stereo instructions in Mandarin Chinese (which I do NOT know how to read).  I know there’s a newer article from this year which includes guidelines and screenings for people with Cowden’s Syndrome.  The new cancer risks, etc.  I’m going to see if I can find it to post here.  I know I talk a lot about CS and I have the page up top, but many of you don’t know what I get to take part in for the rest of my life.

(Which brings me to a small review about my follow-up with the GI doctor.)

I didn’t care for his bedside manner, and he wasn’t the one who did the procedure, but that’s no matter.  He said my polyps were “hamartomorus” and tomorrow I’ll detail more of the report.  This doctor and his team recommend my next colonoscopy to be in 2 years which is a heck of a lot better than 6 months time.  FOR REALS.

But I’ll talk more about this procedure and what they found and all that jazz.

Right now I just found a link about Vitamin E (from the Cleveland Clinic) and I’m going to post it in my Cowden’s Syndrome page.

Good night!

 

Jumble

I’m rather a jumble of stuff now.

Worked 2 days this week.  I’m glad to have had sub work.  I forget how much I adore find so interesting high schoolers.  I wonder why defiance comes so easy to them?  What their home life must be like?  I mean, I know I’m a sub.  I GET THAT.  I know you try to get away with stuff with the sub and all that stuff.  But during one period today this was OVER THE TOP.  I’ve never had an interaction with a student this severe.  I had to take away his headphones (What is the school rule with iPods you say?) and after too many warnings having to get after him (were any of the other students up out of their seat playing with the globe?) I finally gave a detention to Student X.  Guess where the paper went?  Wadded up in the trash can you say?  Well, I sure thought it was and I almost kept his headphones til the end of the day, but after I put him on the spot and had him show me the detention slip he finally dug it out of the bottom of his backpack (still wadded up of course).  I didn’t engage.  I LOVE LOVE LOVE LOVE how when I asked Student X a question before I could HARDLY finish my question his response was, “Huh?”  My response to him was, “I didn’t stutter.”  If the other students around were paying attention to us, instead of doing their homework, they usually got a kick out of this.

I’ll see him next week too!

I haven’t volunteered this week at the animal shelter.  I miss it.  I need to get there.  My plan is Monday or this weekend, depending on how things go.  I think about the cats sometimes and what goes through their mind.  Are they thankful to be off the street?  Do they realize they are no longer having to scrounge for their food?  They are safe from predators and harm?  I miss them.  I need to get some love from them too.  ASAP.

I’ve been thinking about colonoscopies and mastectomies.  (The one I had and the one I may have in the future.  I still haven’t figured out what I’m going to do with the PBM.  How do you wrap your brain around 85% breast cancer risk?  Especially since you have no family history but this bloody genetic condition called Cowden’s Syndrome that puts you at risk for cancers?  Some people tell me NOT TO DO IT FIRST.  I don’t KNOW if I’m going to get cancer and then IF I do…I can deal with things then.  

BUT…when I get to 55 or something, I’ll no longer have the breast MRI’s and I’ll just be screened like a regular person.  Mammograms?  And what else?  Monthly exams?  That’s what regular women do who ARE NOT high risk.  What else is there?  I know I’m not wanting mammos 2x a year because there’s all that extra x-ray stuff.  So…that can put you at risk for cancer too!  Where does that leave me?  What if I AM part of the 15%!?)  I’m not anywhere near the decision.  I’m thankful to have found several blogs of women who have made the decision to have the PBM (they are BRCA+) so there’s a family history there. I read their stories, pain, triumphs, relief, happiness, and think, “Self.  You should get in on that action too.”  (Not for the pain part, but for the triumph and happiness and relief part.)

The question is HOW?  HOW TO I WRAP MY BRAIN AROUND MORE SURGERY?

Interesting stuff right?  I am reading a book called “The Power of Now”….but I think I need to just find a fiction book now that I can get into.  Or watch a movie tonight.  Something to check out and get to bed early.

Do you believe in fate?  Or coincidence?  What do you believe as the difference?  Or is there?  I got some bad news about a friend today.  A new friend that I met by happenstance, actually.  I put so much stock into “HOW” we met, and I guess it doesn’t matter.  My heart is just heavy tonight.

A few things I learned from my colonoscopy

1).  There is such a thing as too much Jello.

2).  Beef broth is better than chicken broth.

3).  When drinking “THE STUFF” (my pet name for it) – lick a lemon before you chug it.  AND…don’t nurse the cup for the entire 15 minutes.  CHUG it and get it down, so then you can rest for the remaining 9-10 minutes before you have to start on another cup.

4).  Have more Popsicles on hand besides lime flavored.  UGH.

5).  Squirt isn’t considered a clear drink.  (Why?!)

6).  The prep. the day before really is worse than the procedure itself.

7).  When the nurse says, “OH SH*T! as she’s putting in your IV it doesn’t do well for your anxiety.  (The hospital overhead had just announced “CODE YELLOW” 2 seconds before her outburst. Thankfully she didn’t blurt that out because of my veins; however, she did have to go fishing for one and I told her NOT TO do that.)

8).  It helps to have a doctor you can count on to tell you the results when the GI clinic can’t see you for another month.  She gave me the results and the fabulous news is NO CANCER.