An open letter

To the person I came in contact with earlier today on Instagram. Remember, you were on my account, but that’s no matter. Since you blocked me, I have no way to respond but thankfully I have my own place on the Internet to share what’s in my mind and heart.

1). OK. So, you have the PTEN mutation as I do. You have that listed on your profile, and I can only assume that’s why you followed me. I saw that you noted “brain surgery warrior” or some such thing on your profile. Since you noted that on your account, I only *safely assumed that you must have LDD like I do. (Now, for those that don’t know, LDD is a very rare type of brain tumor associated with Cowden Syndrome. I only asked you about it since I assumed you have the same type of brain tumor as I do.)

2). That’s crazy that you too had a chiari malformation. I too had that, due to the size of the brain tumors in my cerebellum my cerebellar tonsils were pushed down and hence part of the reason why I needed the craniotomies.

3). I wrote numerous times in our chat that I didn’t mean to overstep any boundaries with you. Since you didn’t know what LDD was, and to be honest, may persons living with PTEN mutation DO NOT know what it is either. I only shared what I know. I wasn’t barking orders at you. I am fully aware how overwhelming life with Cowden Syndrome truly is. I know you didn’t *ask for advice, nor was I giving you any,. I was only “chatting” with another person who truly understands how overwhelming the PTEN life is. That you took offense to our chatting, I am sorry for that. I hope that you have great doctors who will keep you in the loop for the health of your brain moving forward.

Blocking me seems childish for some reason, but you do you. It’s a lot to manage! You can do it! I’ll be here if you ever need anything. I wish you all the best!

Guest post – Meet “C”

Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome.  I am pleased to introduce you to “C”

*

First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!

So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.

I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.

And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.

A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.

Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!

If you would like to connect with “C” – her Instagram account can be found here.  ❤

Hi

It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.

I’m struggling. Hard.

And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?

I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.

Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.

Had the thyroid MRI last week and waiting to hear.

Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.

🙄🤮

Wordless Wednesday 7/27/16

MIA

I know I have been MIA; I have quite a bit of catch up to do!

I saw this quote on Instagram this week and wanted to share it.  It has been on my mind and sums up how I have felt lately:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts – before this, and after this.”

I don’t know who said this, but I really like it and it speaks volumes to me about the brain surgeries.  My life will never be the same again and I can definitively see it divided into two parts: before July 27, 2011 and after.  Lately, I find myself having more difficulty communicating (processing) at work.  I feel like I stick out like a sore thumb and that people look at me like I have 3 heads or something when I speak.  I feel foolish and that people humor me to my face.  I feel that my co-workers laugh at me behind my back and wonder what I am doing there.  I fear I will make a mistake.  I fear that my co-workers won’t and don’t understand me.  I fear that I sound like a fool when I speak (and don’t make sense) and jumble my words to try to communicate.  Things don’t seem to be going right in my brain.  Things are getting harder and I am scared.  Having a conversation with someone feels OK; it’s when I have to follow a list, lesson plans, verbal instructions, etc. is where I find myself having problems.

I do not like it and I do not know how to tell if this is really happening, or all in my head.  I do not want pity; I just don’t want to look stupid.  I would rather stay home and not do anything.  Where does that leave me trying to earn income to support myself?  If I cannot be a properly functioning employee?  What am I supposed to do?  And I am not yet approved for Disability so this adds heaps and heaps of anxiety to my dire financial situation.  Will this ease up anytime soon?

“If I Had Known Back Then Who I Know Now: Not So Rare After All”

Hi guys!  I am super excited to share this with you.  And, it pretty much sums up why I still write on this blog and why I  share my story on Social Media.  I believe in the power of networking!

No particular order

I don’t know where to begin.  Life has moved so quickly that it’s been difficult for me to keep up.  I have several things I want and need to write about, but it’s difficult to break it all down.  (I’ve noticed that my brain works a bit differently now since surgery.)

Do I write about:

• The neurologist and neurosurgeon appointment I had last month?  Where when I did one of the specific neurology tests for them I was so overwhelmed with my balance deficits?
• The appointment I had with the Psychologist (Psychiatrist?) that the Department of Disability Services sent me to (after the above appointments.  Same day.)  After spending over 2 hours with him I also was saddened of the memory deficits I have?
• The appointment with my primary doctor where we went through a list of labs to draw, most specifically discussing having started me on estrogen replacement even with my breast cancer risk?
• That my balance and vertigo episodes are steadily increasing?
• That concerns over my financial situation keep me up at night?
• That issues with my brain trump all happiness I can find in my life?
• The EEG and CT Angiogram I had Monday?

No. They are not trying to read my mind.

That’s a lot, right?  And, that’s not even 1/2 of it.  But, that’s the most of what’s been on my mind (no pun intended).  While I am going to discuss most of these points (because that is why I have this blog, to write about all this.) I also am very aware that in the depths of fear and sadness of the unknowns, I need to be very aware of the good moments (days) in my life.  Because there are some of those.  And let’s face it, there’s always some sunshine, it’s just a matter of making solid effort to look for it.

• I have just found the wonder that is The Big Bang Theory.  I AM IN LOVE!  Where have I been?!
• Volunteering at my nephews’ school.  I don’t have children, may never have children, but the teacher in me really likes to be there. I must admit it.
• Spending time at a local animal shelter (you can see some of the recent pics here.)  I have a super bleeding heart for all animals and if I could, I would absolutely take every cat home with me.  But, since I have so much love to give and no one to give it to (besides my nephews) I might as well spend as much time there (as I can muster).  It’s hard to leave them there, sure.  But, when I get sad I remind myself that them being there is 1000000% better than the alternative.
• Having connected with another person who has Cowden Syndrome!  Can you believe that?  I found her (and a few more) on Instagram, but this person lives only a few cities away from me.  We met again yesterday for lunch.  I’m still reeling with the fact that with statistics of 1/200,000 people diagnosed with Cowden Syndrome, I found someone who lives close.  Un-freaking-believable!

There’s more.  Of course there’s more.  Right now, in fact, I am listening to my mom and nephew play in the hallway and Nephew #2 is laughing and having such a great time.  Hearing his laughter is just the sweetest sound.  So, my point here is this:  I know that life is a matter of focus and perspective.  It matters tons where you point your thoughts and energy.  I get that.  I totally do.  I try to be positive and upbeat.  I try to keep all my medical stuff here only, and not on Facebook, etc. because I’m learning that most people don’t want to hear about it.  Only people who deal with chronic medical issues really understand.  So, here is where I am raw and real, about what life is like with Lhermitte-duclos Disease AND Cowden Syndrome.  But, I don’t want to forget (too much) about the other parts of my life, but I’ll be honest.  When I’m dealing with LDD and CS stuff and I’m in the depths of despair, it’s freaking hard to find the good.  So, I am fighting as hard as I can to hold tight to the good stuff. And, trying to make (and find) more good stuff in my life.

Social Media

One of these days I will find a streamlined way to update things.  But for now, I update each website when I’m near it, or whatever seems easier.  (The Facebook page has gotten a few updates lately, and I joke that Facebook is a necessary evil.)

I’ll figure it out.  Eventually.  Ideally I would update my blog and then copy the update everyplace else.  We’ll see…

This morning I updated my GoFundMe page as that reaches any Twitter followers I have.  Each site has it’s own purpose and I fully believe in supporting each site as best I can (the Facebook page is a bit easier to share pictures, while Twitter is best for short medical updates).

Right now I am texting someone I connected with on Instagram who has Cowden Syndrome!  This never ceases to amaze me.  I wish someone would have told me 3 years ago that all this social medial has a purpose when used for good!

I’m a believer in the Social Media game. I really am.

 

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.

 

 

No Fun Fact Friday

I haven’t felt very “fun” lately, so I am tossing FFF today.

Maybe it’s because I have the mammogram next week and that “85% lifetime risk of breast cancer” just never goes to bed?  Or that I have an early brain MRI to check the brain tumors?  Who knows.  Regardless, something is off.

Here’s a quote from my Instagram account this week:

Yoga is amazing. It just is. Period. I’m so thankful I found a place that I can work on strengthening my balance because these effing brain tumors aren’t going to get me down! At least not without A FIGHT!  Last week I had gnarly vertigo and I’m struggling with my balance & dizziness. Have the tumors grown? Who knows. Is my cerebellum giving up the ghost? Dunno that either. I AM TIRED, so I can only imagine how tired my cerebellum is. So. What do I do? I keep fighting tooth and nail on this freaking balance stuff. Because WHEN the time comes – I hope I have established enough of a reserve to pull from.

Something kinda funny happened today while I was out running errands.  I got a phone call from a number that I recognized to be from the hospital, which I assumed to be confirming the mammogram on Monday.  After I answered the girl told me she was calling to let me know the technician was going to be on vacation next week and “did I want to reschedule my appointment?”  I was a bit confused because, although it’s a good thing that the radiology staff knows me by name, it was odd they were calling me to tell me she was going on vacation.  After I pressed her for a bit more information she remembered that I either “only liked” certain hospital staff or “didn’t like” certain hospital staff.  (Note: I know EXACTLY who I DO NOT like in the radiology department.  Too many pelvic ultrasounds gone wrong from a raunchy technician – you make sure you leave the room, after you dry your tears, with your head up, OUT FOR BLOOD.)  The girl I refuse to have ever perform another procedure on me THANKFULLY is not the mammogram technician.  Whew.

I was touched that the front desk staff had my back.  Really made me feel good.