A funny

It’s time for a change-up.  I get tired (honest!) of writing about doctor appointments, brain scans, etc.  So I decided it’s time to share a funny with you.

For the past several weeks, I noticed a yellow hue on my palms.  Both hands.  My palms and fingers.  Weird.  A bit concerning.  I thought of my kidneys right away! Oh, crap!

I e-mailed my doctor.  I did some research about “Yellow palms” and read about beta-carotene and B vitamins.

Nothing was really coming together.

I stopped the taking the folate and stopped eating my main food staple:

Yup.

Guess what had been staining my palms yellow?!

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#HisDay

I am striving to be more mindful that today is His Day.

At church this morning, the lesson I taught in Relief Society was on the Temple and how to make that a symbol of our membership.  It was a great discussion and I felt the Spirit.  I am very grateful.

I have several posts half-written still in my drafts folder.  About my kidney scan and mammogram appointment, the telephone call I never imagined I would ever make, my thoughts and fears about the Disability Hearing date finally being set (next month!), all added to the 5 year anniversary (July 2011) of my life becoming all this.

Life is crazy.  My life is nuts.  I continue to strive to enjoy my life.  That is such a foreign concept to me now.  Enjoy life?  I know it’s a blessing to me.  Although, it’s been so incredibly difficult and painful these past 5 years, I’m doing all I can to find the balance.

Even today.

 

 

No words. Again.

I have thought for the last few weeks about what I can write about.  What I can catch you all up on, because life has moved very quickly as of late.  Mammograms, kidney scans, dizzy episodes interrupting life, etc.

While that’s a great thing, it’s also sometimes difficult for me to manage.

But, regardless, life happens on life’s terms. I continue to learn that.

I just clicked on a blog I follow, and found out the devastating news.  I never met this person, but I was one with her.

I am so sad.  I am so sad for her family.

Betcha’ you can’t spell it backwards!

Sometimes having Cowden Syndrome is a huuuge drag.  I mean, a big freaking drag.  Wrought with doctor appointments and scans a plenty, but that’s the nature of the beast.  To, “make sure I’m watched closely if something arises.”  You know, it’s funny because just last week I was thinking that things had been pretty quiet lately on the medical front.

Dun dun dun…

Oh, and I also want to add:  In case any of you are wondering still if I’m using Cowden Syndrome and Lhermitte-duclos Disease as an excuse to not live life, or why I don’t schedule all my appointments during the summer so I can teach, this is why.  When things come up, they come up.  I can’t say to my oncologist, “Oh sorry.  This isn’t convenient for me.”  I have to make my schedule conform to their schedule, plain and simple.  That’s just how it works when you have a hereditary cancer syndromeDeal. With. It.  (This is mainly for my ex-friend who verbally attacked me a few months ago with all this garbage.)  🙂

I saw my oncologist on Friday…

  • I had a kidney ultrasound on Thursday; the last one I had was April 2014.  That one was unremarkable from what I remember.  This one?  Not so much.  Dr. L said I have a lump/bump on my left kidney.  She didn’t mention the “C” word initially, but when I asked her about it she said she didn’t know.  She named all sorts of things it could be (even technician “technique”) but I find that very interesting when the radiologist named it in her report.  An angiomyolipoma.  I’ve been told by a few people that lipomas are usually benign, and that’s a big sigh of relief.  But, I’m really really really really really trying to not turn myself into a pretzel.  Worst and best case scenarios, right?  I think I was given all of it, but the little inkling in the back of my mind is nervous.  Let’s be honest.  So, my doctor is calling for a repeat kidney scan this coming Thursday.  My heart is beating fast, but I’m remembering to breathe.  Breathing is the only thing I can do right now anyway.
  • Dr. L is sending me to an oncological surgeon because of the EGD I had a few months ago.  I had “multiple polyps” in my esophagus and I guess that raised a bunch of red flags to some people. (Ha.)  I’m not sure what this appointment will entail, but all I know is next week I’m going to be super busy a just a tad nervous.  Overwhelmed?  Well, maybe.  But, I just can remind myself this isn’t brain surgeries and I “got this”.  🙂

The moral to this story is Cowden Syndrome sucks rocks, and it manifests so differently in so many people.  I have LDD, but not everyone I know with CS has LDD.  I may/may not have kidney issues (it is 33% lifetime risk of kidney cancer BTW with CS), so whatever will be will be.  I say that today with all honesty and openness, but I don’t know if I can hold that till Wednesday morning.  We’ll see.  The point is that I can’t give up.  I won’t give up.  I guess someone can be both scared and peaceful at the same time?

Shorty

I didn’t want to start taking psych meds, because with all the other meds I take I am worried for my liver and kidneys.  Yes, they are checked but that doesn’t ease my anxiety for their well-being.

However, I finally gave in.  I started 2 medications recently and I cannot deny that I feel better.

I am thankful to feel a change; and that makes me happy I can tell.

There is quite a bit of stuff on my shoulders every moment of every day.

And, I feel better.

I pray it lasts.

 

I would like to keep as much of my blood as I can, thank you!

What with all my surgeries these last few years, I am a bit partial to holding on to my blood.  I mean, I just am.  I realize that Cowden Syndrome comes with a lot of blood work (including managing my Vitamin D levels) and the other labs vary from time to time.  I have had to learn to be an empowered patient, or engaged patient, or electronic patient, basically any appropriate (medical) word beginning with “E” and in front of the word “patient” would be me.  🙂  I have to add that I still hate identifying myself as a patient though.

This morning I was due to get my levels of Vitamin D checked. I am still unclear why it has been so wonky since before diagnosis, but it has been quite tough to get it stabilized.  (At one point I was on 150,000 IU’s of Vitamin D a week!  #TrueStory.)  Before I knew about brain tumors or rare genetic disorders, I remember that my Vitamin D level was 28.  I have been forced to learn a whole lotta stuff these last few years I know it’s better to have a higher level (but my current endocrinologist doesn’t want the level TOO high because then I am at risk for kidney stones, or something.)  Anyway, it’s been a very fine line getting this Vitamin D level worked out.

About a month ago, thankfully one of my doctors checked my level and it was 34.   Before this test, I remember it was almost 50.  Why the change?  What the heck is going on?  Thankfully I got ahold of the endocrinologist and he told me to take 50,000 IU once a week and then get my blood checked a month later (which was this week).

I went to the laboratory this morning and joked with the front desk woman that I “only had 1 lab this morning”.  She said, “Oh yeah, I know, huh.”  (NOTE:  The hospital staff in Radiology and Laboratory know me by first name.)  I told her which lab I was having done this morning (VITAMIN FREAKING D!) and which doctor.  I thought she was clear.  I was clear.  Come to find out she was clear as mud.

When I went back with the phlebotomist she took 5 vials from the drawer.  I thought it was rather odd to have so many, and mentioned it to her kind of matter-of-fact.  She then mentioned, “Cortisol (something)”, and I told her:

Me:  We aren’t doing those labs today.

P:  Oh, you’re not doing labs for Dr. B?

Me:  NO. I TOLD the woman up front that the labs were for Dr. S and ONLY Vitamin D.

P:  Hmmm.  OK, right?  OK, we’ll cancel.

Me:  I EVEN joked with her that I only had 1 lab today!

So the point to my story is this:  People make mistakes, people are human.  I get that.  But I never knew how much I had to be on top of my game before this life with 2 Rare Diseases.  Before, I would have just let her take those 5 vials of blood and never would have been the wiser, never asked a further question about it.

Now?  I am all about asking all the questions I want and need to.  And, everyone else better just deal with it.

 

Raw 101

What if there was a Rare Disease Manual? That detailed very explicitly what one should do after diagnosis on how to find balance in life again. How to interact with people in a safe and healthy way. Would you read it? Would you follow it? Would you do everything it suggested?

It is super clear to me that I am not over this brain tumor. The shock of it and all that lead up to both surgeries. I remember the moments before going into the OR like it was 4 hours ago.  I can go back to the bad place in a hot minute.  And, that scares the crap out of me.  In more ways than one.

Sure, it’s almost 3 years since surgery and I should be “past” this, right? Well, I’m not. PTSD? Absolutely. Before you judge me and think, “Man Heather. Put on your big-girl panties and suck it up. You don’t have cancer.” – You’re right. I do not have cancer. And, I’m so thankful for that.  However, EVERY SINGLE MOMENT OF EVERY DAY I THINK TO MYSELF, “Is this my last day? Is this the day BEFORE I find out I have breast or kidney cancer?” There are no guarantees in life either way. That I will or will not get cancer.  I won’t bore you on the studies about PTEN mutations and lifetime cancer risks.  But, the pressure and fear and waiting and unknown is quite paralyzing at times. All those jumbled emotions motivate me to write more. To find balance. To figure my life out today.

The living “scan to scan” – with Cowden’s Syndrome and Lhermitte-duclos Disease – isn’t really living. The what if’s? The unknowns. The responsibility; the pressure; the weight on my shoulders is sometimes overwhelming. Managing all the appointments and wondering/pondering, “Is there something else I can be doing to help my body not make tumors that can become malignant?” – I need a job -> money -> I can then buy things that will help me health-wise (juicer, gym membership, supplements since there is no FDA treatment for Cowden’s Syndrome or Lhermitte-duclos Disease)…The point is that I AM TRYING TO NAVIGATE MY LIFE WITH 2 RARE DISEASES. I am a work in progress. Remember the manual I wrote about in the beginning? Well, there isn’t one. So, I’m doing all of this without a net. Can’t you have some patience with me? Or some understanding? Instead of judging me and my actions, why not offer some compassion to me?  Empathy?  Understanding?  This world of Rare Disease is terrifying.  As I get more involved in it I see how different it is for every single person in it.  My book wouldn’t even be the same as another person with Rare Disease, but I assure you:  If there was a book I could read, or was recommended, on how to navigate life once again with all these things on my plate, I would read it in a heartbeat.  This isn’t a fun place to be in folks.  Lest you think I choose to be here…do think again.

Last night a friend told me that I have “walls up”. I don’t know how much truth is in that statement; however, I believe there is some truth. Emotional Pain is hard to let go of. Forgiving others when you’ve been hurt is a rough pill to swallow. Finding support from people you feel you can’t trust isn’t easy. I’m not here to chase people. I’m not here to hunt you down and guilt you into being my friend. I have said this before and I will say it again: Either you are in it to win it with me or you’re not. Period. That may sound dramatic, and I don’t mean it to, but it’s just reality. It’s life. It’s my life. All these things, plus more, is what I have to process through.

To be honest, (and here is where it gets even more raw) I think I had romanticized what getting sick/my diagnosis should have looked like. That my friends would have rallied around me. That they would have raised money for my medical bills, visited me, supported me, kept in contact with me, you name it.  You hear about people who have life-threatening health issues and their friends raise the roof for them, right?  I had none of that. And I’m hurt. Bitter. Angry. Resentful. Because it makes me feel like I don’t matter to them. I don’t know how to relate to certain people anymore after that. I’m worrying about the next breast MRI and whether I have breast cancer, and others are worrying about what so-and-so texted another person or about movies or dances. It’s PERSPECTIVE PEOPLE! It’s life! Life is in session!

Yet, lest you think I have completely lost my all of my marbles, my rational mind comes in and says, “But you don’t know what they are dealing with Heather. You don’t know their trials and tribulations.” And you know what? You’re right. I don’t know. Because I am managing my life with Cowden’s Syndrome and Lhermitte-duclos Disease the best freaking way I can. I don’t know any different! I’ve never done this before! I am figuring it out as I go.  

I get that I must lay all this down. All these emotions that are jumbled up inside me. This is part of why I write on this blog. To feel my feelings with brain tumors and genetic conditions that (can/will) cause cancer. I do my best get it all out here, to process, then I get up from the chair and try to live my life the best way I can. I don’t know. I don’t know how to lay all of this down, that’s the problem. The hurt, the fear, the anger, the anxiety, the PTSD, the expectations, the resentment, all of that. Does it get easier?

I sure hope so.

Freewrite

Things have been rather quiet on the Cowden’s Syndrome front – and I’m very thankful.  But you know what?  There’s a small, nagging voice in the back of my mind that has bothered me.  And I think that is part of the reason I haven’t written too much lately about my health, because if I sit down here and right about the breast, colon, uterine, kidney cancer risk I might jinx something.  Oh yeah and then there’s that brain tumor thing too.

I remember reading in one of the user support groups about these “6 month windows” – where you try to live your life as best you can and do what you can to not let CS get to you.  But then when the time comes for your screenings you put on your big girl panties and suck it up and deal with it (my words).  I guess after almost 2 years since diagnosis (Fall 2011) I am in the groove.  But you know what else?  I don’t want to be in any effing groove for Cowden’s Syndrome.  I don’t want to be concerned FOR THE REST OF MY LIFE about the risk of breast, colon, uterine, kidney, oh and melanoma cancer.  All the while my brain is getting scanned too.  I don’t want this.  I don’t want Cowden’s Syndrome.  I want my life that didn’t have this pressure.  I want my life full of fun and joy and laughter without this looming over my shoulder.

This is what comes out of my mind at 10:21 PM.  Maybe now I can sleep.

When I need to get away from Cowden’s Syndrome and Lhermitte-duclos disease – I will share my love of edited photos, which I have done lately.  I guess that’s a way I live my life separate from rare diseases and brain tumors.

If you’ve been to the ER this week raise your hand

[Me too!]

But I’m so thankful to say things seem to have settled down this morning!

I spent another 6 hours in the ER yesterday. The frequent urination had gotten even worse. And I was getting chest pains on top of everything else. Go figure.

Here’s what we do know: My heart, kidneys, blood sugar [99!], sodium look good. If I already had diabetes insipidus my sodium would be raised, as per the ER doctor yesterday.

Here’s what we do not know: What was/is causing the frequent urination. As I said – things seem to have greatly settled down this morning. I have stopped 1 medication [Celexa] even though I have been on it before. About 6 weeks ago I started to wean myself off of it. Since I have started to exercise regularly and change my diet I wanted to see if I didn’t need the Celexa [that was my hope at least].

But a few weeks ago I started to notice I was struggling with some anxiety again and my doctor and I agreed I’d start it up again. So last week was when I started the medication again, probably on Friday or Saturday. Sunday is when the problem started….wonder if it could be related?  And here’s the kicker – I don’t think this is Cowden’s Syndrome related…but I’m not convinced that the gangliocytoma isn’t involved somehow…

20130403-122533.jpg

If you were as hungry as I was – you will make this work. Trust me.

Dear Cowden’s Syndrome:

I’m really angry at you tonight.

Last year, thanks to you, I had to have my head cut open two times for the craniectomy.

I’ve had to be poked and prodded with instruments and put through machines that I don’t care to ever repeat.

I’ve had my Dairy Queens flattened and hung down while getting checked; I’ve had medical devices put inside me to scan my uterus; I’ve had kidney scans and a colonoscopy at just 40 years of age. What more do you ask of me?

Today – was the first endometrial biopsy.

This sucked.

Oh my freaking crap it sucked.

I thought it was going to be similar to a PAP smear – in at least leading up to it.

Boy, was I wrong.

Once the medical device was inside – there was a shot, then scraping. I’ll just call it what it was. And Dr. K said it’d feel like cramps. He was so very right on. Not cramps like, “Oh I’ll go to the beach with a light tampon in” cramps. Cramps as it, “Give me a Tylenol with codeine and a heating pad and wake me up in 2 days” kind of cramps.

Open bottles of Extra Strength Tylenol and Ext...

Dr. K told me before hand the “risks”…bleeding, infection, and something else I can’t recall.

After the procedure was over (THANK YOU ALL THAT IS GOOD AND HOLY IN THE WORLD!) – I had to get my bearings for a moment while I was still laying down on the table. I told the doctor that I don’t really ever want to do another one of those procedures again. [He must have forgotten to tell me that there might be bleeding, or I might get my period, as NORMAL stuff from the procedure.]

So, I’m finally feeling better – getting dressed – and I’m not feeling right “down there”. I notice there’s blood.

I froze.

Thankfully the Medical Assistant knocked at the door and asked me, “Heather, are you OK?”

I told her, “I’m bleeding,” – and I could not move. All I was hearing in my head at that moment was what the doctor said about bleeding and complications. He had forgotten to tell me that some bleeding after the procedure was normal.

Cowden’s – tonight I’m pissed at you. I’m really pissed off at you. I have brain tumors, I am at a high risk for breast cancer (and a butt load of other cancers), have to see so many medical professionals to make sure I’m screened properly:

1). Neurosurgeon

2). Neurologist

3). Oncologist

3). Surgical Oncologist

4). OB-GYN

5). Dermatologist

6). Nurse Practitioner

And more will probably be added in the future.

I’m tired tonight Cowden’s. I’m so tired. You got me today and you won one. You knew I wanted to be a mother and have biological kids but you won that one too since you’re taking my uterus. You took the job I had last Spring, you took any sense of normalcy I had in my life. You took a lot from me…and I’m fighting as hard as I can to figure this out.

But tonight, I give in. You got me tonight Cowden’s.