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?  🙂

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Just like riding a bicycle

These last few months I have had a nice break from medical appointments.  It’s been really nice, I must admit.

But as they say, when it rains it pours.

Not even counting oral surgery or losing my hubcap last month, I got slammed this week.  I got sick and I don’t mean a bit sick, I mean siiiiiiiiiiiiiiiiiick.  All week I needed to get my blood drawn for my endocrinologist appointment tomorrow morning; I was only able to crawl out of bed this morning to get that done today.  Also tomorrow morning, I have my oncology appointment.  After my blood draw appointment I had a thyroid ultrasound.  There was so much wailing and gnashing of teeth.  I could not stop coughing.  At all.  At one point during the exam the technician asked me, “How long have you been coughing like this?”  (Some of the medical people on my “team” don’t like me coughing too much since I the craniotomies.)

Thankfully, I powered through.  The doctor won’t have the report by tomorrow, but at least he can read the results online.  I best be ready because I feel a firestorm coming!

Estrogenless

Do you know much about estrogen?  I sure don’t.  I kind of had a crash course last December before/during/after the hysterectomy, but if you asked me to give you the dictionary-definition of it, I’m out.

Anyway.  My oncologist doesn’t want me to be on hormone replacement (I had total hysterectomy last year) because of the breast cancer risk, and since there’s “not enough data” on Cowden Syndrome, it’s hard to know anything about anything when it comes to Cowden Syndrome (not to mention Lhermitte-duclos Disease, but that’s for another post).  So, most doctors on my team support me doing life now COLD TURKEY.  No estrogen, no nothing, just to be safe.  And, for these last months, I was on that train too.  The train to, “No-hormone-replacement-for-Heather-because-we-don’t-want-to-risk-her-getting-breast-cancer-and-let’s-just-see-how-she-does-life Town”

While the hot flashes and insomnia have been paralyzing at times, I started taking Melatonin, Zinc, and Magnesium before bed which has helped me sleep through the nights and not wake up from a hot flash.  The insomnia does get pretty gnarly still at times, but I guess overall I am managing.

Except.

These last several months I have exercised (Yoga, Zumba, etc.) the last 2-4 days pretty religiously.  And, while I may have written in the past about my expectations of weight loss/my body changing, I have worked on letting those expectations go (I am a work in progress, daily).  And, I know I am gaining muscle.  I can hold certain Yoga poses now, and just today in class, I didn’t feel like I was going to die.  Die right in the middle of the floor.  I was tired, let’s be clear, but I didn’t think “Today, in this class, I am going to die from exhaustion.”  like I used to. So, that’s good!

But, while some parts of my body are changing for the good, there are other parts that are changing for the BAD.  Bad, bad, bad, bad, baaaaaaddddddddd.  It has kept me up at night.  What is going on? Shouldn’t I be seeing some other changes?  I started using an app to track my food, exercise, and I just haven’t felt right about something.  I don’t know what.  Things should be changing MORE for the good!

Talked to my chiropractor today about estrogen stuff and the concerns I have about my body changing (I’m 42? I have no thyroid or ovaries? I mean, right there, isn’t that 3 strikes against me?)  I’m not giving up.  I’m not complaining specifically.  I’m concerned.  I know that I don’t like the way my body is changing negatively.  So, I need to do some research.  Because, while “we don’t know” the breast cancer risk with HRT, I am monitored very closely on that front (mammograms, breast MRI’s, clinical breast exams).  I can’t believe that HRT would cause breast cancer for me, especially when I have no family history of it.

But, all those things I just typed are WHAT WE DO NOT KNOW.  All the freaking unknowns that Cowden Syndrome shoves in my face on a silver platter.

All the while, laughing maniacally at me as I type this in the midst of the worst hot flash ever.  I am ready to try something different.  If I live to be 95 years old I cannot endure much more of this.  And, for the record, whatever you have heard about hot flashes is A LIE.  A BIG FREAKING FAT HUGE LIE.  Until you have lived and breathed this – you have nooooooooooooooooooooooooooo idea.

 

PS.  Anyone want to get me one of these for an early Christmas present?  🙂

 

Fun Fact Friday 6/20/14 (late)

Over the years, I have worked at a few bookstores and looking back, those were my most favorite jobs.  Dare I say I have a tendency to hoard books?  I used to, anyway.  I love to be surrounded by books.  Most any genre, except for true-crime.  Those never caught my interest for very long.  Back in the 90’s (baha!) I read mainly fiction; John Grisham was my go-to guy.  But as I matured I was drawn more to non-fiction; (medical mostly) and I had a lot of thyroid books (back before we knew of Cowden’s Syndrome-anything.)

Last year I was in the middle, no, almost end of, Eat Pray Love.  I took this book with me everywhere.  But, I realized about 6 months ago that I lost it.  I was pretty devastated, although I had seen the movie and was surrounded by tons of other books, I really wanted to finish this book and feel the books are always better than the movie.  I was going to check it out from the library but I was really nervous that I would lose this one, too.  😦

For the last week or so I have really been focusing on getting that book again.  To make matters worse, I watched the movie again over the weekend.  So, that didn’t help.  I had to find this book.  I was a woman on a mission!

The point of my post is YESTERDAY I FOUND IT!  For $1 at my library!  I couldn’t believe it.  I asked the kid behind the counter if he had seen it in the “Friends of the Library” area and he said he hadn’t.  But, he suggested I look in non-fiction because it was probably shelved there if there was a copy.

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And, THERE WAS!  There was!  I cannot express very well how excited this made me.  To top it off I also bought this book and this one.

Color me happy!

Life is in session

This is a free-write.

Today was supposed to be “ultrasound day” at the hospital.  But, no one bothered to tell me that I needed to be fasting for the abdominal ultrasound.  Scratch that then.  So, I only had my thyroid ultrasound as scheduled.  Thankfully.  This technician was a new one; normally the hospital staff knows me by first name, or at least by “Cowden’s Syndrome”.  I didn’t care for her all that much.  I’m just going to say it here:  IF YOU DO NOT OWN THE EMPATHY GENE IN YOUR BODY THEN GET THE FREAK OUT OF THE HOSPITALSTAT!

She kept saying to me, “I need you to move your head back. Can you move it back more?”

(Well, lady.  I had brain surgery 2 times and part of my skull is missing.  I don’t have the range of motion like I once did.  So, the short answer is NO.)

But, I was willing.  And I tried.  At first she wadded rolled up some hospital gowns and wanted to put that under my shoulders to have my neck be at a specific angle.  I almost spit out my water because I thought she wanted that to go under my headNo freaking way crazy lady!  I am not putting anything like that under my head.  (I’m just thankful I can put my pillow under my head, and even that took a long time coming.)

In the past, thyroid ultrasounds I have experienced have been a bit more involved.  Meaning, the technician is mowing (my word) the wand all over my neck and clicking away on the keypad.  Today was different.  She was almost babying my neck.  Now, in her defense, I had told her about the brain surgeries, but that shouldn’t have made any difference in how she did the thyroid ultrasound.  (Note:  I must continue to have thyroid ultrasounds not so much of the thyroid cancer risk, but to watch the small amount of thyroid tissue that is still remaining in my neck. Since Cowden’s Syndrome is tumor/cell overgrowth – it just needs to be watched.)

I left the hospital and came home to some work “issues”.  I get that we all have work issues.  Life is in session.

No getting around that.  But, as hard as it is for me to admit it – I need some help of the pharmaceutical kind.  I didn’t want to get back on medication.  But, I think I need to.  I am having such difficulty dealing with life on life’s terms.  Because, I don’t like life’s terms right now.  Period.  I miss having money. I miss having independence.  I miss having a life FREE from all this crap.  I don’t have the tools to manage this.  I just don’t.  I admit that.  I feel like a failure.  That I couldn’t do it by myself.  But, I really can’t.  And it all boils down to money.  Money that I don’t have.

Part of the reason I post the “Photo of the Day” and “Fun Fact Friday” is to make sure I have some positive things to focus on here.    Because out there?  I have enough negative to deal with.  Don’t we all though? What makes me any different?  I’m not really.  Of course.  But, I want to be!  I want to have a rich and full-filled life but without money (read:  job) how is that even possible?

So, I come to my blog.  I get on the whiny pot for a while.  And, it feels good to write about it and to own it all.  Own all my fears.  My failures.  My hopes.  My dreams. My frustrations. My anger.  My sadness.  My terror.  All of it.  I own it here because it’s a safe place for me to do that.  But, no sooner than I finish a blog post about what’s affecting me presently, then I need to leave it all here and go about the rest of my day.

The perfect job doesn’t exist.  The perfect health/body doesn’t exist.  The perfect life doesn’t exist.  I get all that.  I don’t like it; but I get it.  What I get to do today is try to come to terms with what’s in front of me.

And, I will.  It make take longer than I expected.  But, I will.

 

 

This is Cowden’s Syndrome, with a Lhermitte-disease Disease kicker

Man.

My head is spinning.

This month has just exhausted me.

Between the medical coverage fiasco, my medical appointments, healing from the hysterectomy, hoping/wanting to get back to work, etc. etc. – I need a massage.  Or some sushi.  🙂

Here’s the latest:

Endocrinology:  Saw Dr. S last week.  I was supposed to have had a thyroid ultrasound prior to my appointment, but because of said medical coverage problems I had to reschedule that to February.  Not a huge deal to wait.  He likes to watch the teeny, tiny, piece of thyroid tissue that is still remaining in my neck to make sure it doesn’t flip out and begin to grow back.  Can you imagine?  I already had 2 thyroid surgeries.  I’m not here for a 3rd. No thanks.  We also talked about parathyroid hormone, my Vitamin D, holding at my 50,000 IU 3X per month, my TSH, PTEN mutations, and more.  I still haven’t decided which doctor is “supposed” to do the screening labs to watch my liver and kidney functions.  You know, those 2 things really haunt me and I want those 2 babies to be happy and healthy and live long, happy, lives. My previous Endo. (I MISS YOU DR. F!) [I think] used to run all these labs, but you know, I actually don’t know.  I just don’t want anything to fall through the cracks. I have said that before and I will say it again.  I feel such pressure on my shoulders to manage this all.  I KNOW my doctors are great and cautious and conservative and have my best interests at heart and for that I am very grateful. But, I’m not their only patient.  They have tons others.  It’s not “Heather-world” for them, but IT IS FOR ME!  I have to do this.  Because if I don’t, who will?  He wants me to come back in 3 months and then we will go forward.  And, to check my thyroid ultrasound that I have next month, too.

OB/GYN:  This was a follow-up from the hysterectomy 6 weeks ago.  Oh, and also.  THE HOT FLASHES MUST STOP. They must end now.  I am about to jump off a bridge they are so bad. Everywhere. Everyday.  I am not joking.  Whatever you think you know about hot flashes?  YOU ARE WRONG.  Dr. K looked me over, incision looked good (except for a small problem but nothing too major to even write about), and I have to go back to see him next month.  Dr. K was “kinda OK” with starting HRT, but he wanted to talk to the oncologist first.  You know the risk of breast cancer because of Cowden’s Syndrome?  Yeah.  So, he said he’d email Dr. L and then let me know.  What was really neat about the timing of these appointments is that I saw Dr. L the next day.  🙂

Oncology:  I have been on a 6 month cycle of breast MRI/mammogram to check my Dairy Queens for any suspicious activity.  I was due to have the breast MRI in December but since I had surgery I was in the midst of recovery so that blew a hole in this schedule and now we have to make some changes.  Dr. L also does a clinical breast exam every 3 months (ish) in addition to those screenings.  I have no family history of breast cancer but when it comes to a genetic condition like Cowden’s Syndrome, does that even matter?  I don’t think so.  She and I talked about HRT, the hot flashes, how much I want to jump off a building, the fact I am not sleeping, the fact I put off sleep as late as possible because I know I’m going to wake up with a hot flash, my anxiety rising (due to all things Cowden’s Syndrome and Lhermitte-duclos Disease), scheduling the breast MRI, the recovery from the hysterectomy, the benefits of having had the surgery, whether or not the ovaries should have stayed or gone (go, in my case), and there was some more stuff but I cannot remember it all right now.  That happens sometimes.  So much information in each appointment.  But, I suppose that is why I’m so lucky I go so often to see my medical team (I’m only being mildly sarcastic here.  There is truth in that statement.)  She also wants me to come back in a month so that we can review the breast MRI.

(Next week) Neurology:  Sometimes I feel that neurology is that forgotten stepchild in all of this.  There is so much going on every month (or there about) with CS but having a brain tumor (2!) isn’t something to sneeze at.  Must remind myself often ganliocytoma is slow-growing and benign.  But a brain tumor is a brain tumor.  You can’t get around that.  And while I do my best to put on my game face, things are different.  I’m different.  You just can’t get around that, either.  I don’t know what Dr. H will tell me next week.  We don’t yet have a set scanning schedule of my head (every 6 months, year, etc.) so I don’t know.  There’s not enough data (my words) on my Lhermitte-duclos Disease that I would think it would be good to scan me (often) to see what type of growth (if any), (I mean none!) so that records somewhere in Rare Disease land can be updated.  You know?  I found some data from Orphanet that said in November 2013 there were 220 cases of Lhermitte-duclos Disease.  I will ask Dr. H next week if I am 1 of that 220.

Someone asked me at church today if I was working.

Cowden’s Syndrome and Lhermitte-duclos Disease is my work.  I work to manage all of this, while finding peace and balance in my life.  Some days it’s hard to manage all of this.  Other days, it’s less hard (although that is usually when I eat sushi for lunch or dinner.)  🙂

What would you do?

Confused

Confused (Photo credit: Digiart2001 | jason.kuffer)

No.

I mean really.

What would you do?

I saw the surgical oncologist yesterday about the prophylactic bilateral mastectomy.

Remember that thing?

That thing that’s in the back of my mind in addition to the brain tumors?

The lifetime risk at 85% of breast cancer?

Oh yeah.

That thing.

I don’t know.

I’m confused.

I’m scared.

I am feeling overwhelmed.

I don’t want to wait “too long” and wish I’d have made the other decision.

Dr. F is ready to go.  I’m not quite there yet.

Do I dare do the “wait and see” approach?  Does that work in Cowden’s Syndrome?  You see, PTEN mutations causes people to grow things.  Looking back, makes so much sense about why my tonsils were the size of walnuts and why my thyroid was so grossly large.

(I’m doing some things within my power to try to stay on top of that, the overgrowth part) – however, what in life has any guarantees?

Zero

Zero (Photo credit: chrisinplymouth)

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.

Busy, loss, pressure (Photo of the day 9/27/12)

I’ve been busy lately. It’s great.

Typing a blog post in my iPod is kind of hard.

Haven’t had much medical stuff going on lately although next week I have GI follow up, thyroid ultrasound, and oncology appointment. That will be a busy week. Oh yes and dermatology too.

Talking with my counselor yesterday about the loss I experienced last year after diagnosis of the brain tumors. Then genetic condition. Experienced some SHOCKING loss tonight too. Tuck and roll friends. It’s all we can do.

I felt stretched too thin yesterday so I canceled my tutoring appointment and took some “me time”. Went hiking for 40 minutes. Loved it. Missed it. Will do more. I knew I needed space and needed to be with Heavenly Father to experience His blessings of nature.

I love editing photos on my iPod!

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Doesn’t this look like a scene from a Tim Burton movie?

Understanding

I don’t understand anything.  But I know that there is One Person who does.  I have to always remember that.

Mom and I saw the geneticist on Friday.  The appointment was good and informative but it didn’t really tell us anything new.  But that’s OK.  If we didn’t go to the appointment, I would always have wondered if there was something I needed to have gotten from her.  I am getting screened well, she went over all the risks of breast cancer and uterine cancer, the screenings for colon cancer and things like that.  We talked about my family history and my cousins and aunts and uncles on both sides and what if any cancers are on those sides, and with only maybe 1 cancer on each side, the furthest back are my great aunts and uncles on my mom’s side and we’re not really sure about my dad’s side (his aunts and uncles) since my aunt has passed away.

I was shocked to find out that the percent chance of my tumor is less than 1% of either those with Cowden’s Syndrome or either all the brain tumors in the world/population/universe, I don’t know.  LESS THAN 1%!  She showed us all the symptoms of CS (thyroid goiter/cancer – check!, and then LDD – check! ) And there were other symptoms too but I got those 2 already in the bag.  Man…

I’m having trouble wrapping my head around that, no pun intended.  I don’t know if others would have just been able to pick themselves up and jump right back to life, but it’s really hard.  I am trying.  But life for me is different and it shouldn’t be.  I know that.  But I don’t think anyone really gets it, besides that One Person.  I don’t mean to fixate on my health “unknowns “ but it’s just scary.  I mean really scary.  However, as my dad used to say – things might be hard but it could always be worse.  And I know what he meant by that was to focus on the blessings and good things in our life.  The geneticist was talking about a breast cancer gene (BRCA I think it’s called) and if I had a family history of breast cancer and got tested for this gene and carried it there’d be a risk of 90% chance of breast cancer, where now my risk is 50% (depending on what study you read).  So, what do I focus on…the 50% chance or the blessing of NOT 90% chance?  Yah.  OK. I get it.  I get it today.  Doesn’t mean I’ll get it tomorrow.  But I will keep trying.