Guilt sux

I hate guilt.  It consumes me and eats me up inside.

I have so much guilt about burdening my mom; her being forced to pay for my daily living expenses that I cannot take care of.  (In addition to gas, car insurance, etc.)

Accepting my feelings of guilt, or rationalizing coping with them, or whatever is one of my biggest crosses to date.

But at therapy yesterday Dr. C gave me some perspective I haven’t reached on my own:

She said that guilt results from when you do something wrong.

I didn’t do anything wrong to be diagnosed with 2 brain tumors and a hereditary cancer syndrome.  I didn’t cause that.  I didn’t make a less-than-desirable choice and am now forced to live with the consequences.  I just have a “shitty” brain (her words).  And she asked me, “Would you rather have a shitty mom and a good brain?”

No.  No way no how no no no. No no no nope no.

I will take all the crappy things in the world because I have the best mom ever.

I got the better end of the deal then. ❤

The lesser of 2 evils?

…but right at diagnosis (after the brain surgeries) I had 2 huge fears.  Fears that kept me up night:  that I would have to have the shunt and have to file bankruptcy.

Thankfully, I have avoided the shunt so far.

I met with an attorney today to discuss my bankruptcy options.

I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.

No one can tell me what to do.

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But, what do I do? 

 

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?!

That brain scan life

Yesterday morning I had another scan.  I wish I knew how many I’ve had since diagnosis.  (I bet it’s 10X more than I think.)  You know, I think hope wish that every time I go it’ll get easier.  It doesn’t.

I have to ask the MRI technician every time the following questions:

• What if there’s a power outage while my scan is happening?
• What if something happens to you while it’s happening?
• What if there’s an earthquake while I’m in there?
• What if there’s a natural disaster?  Or an emergency at the hospital while I’m in there?

The technician is pretty funny; he knows me by name and me him.  He always talks me off a ledge, which I appreciate.  Plus, I’m usually medicated so that helps 150%, too.

I practiced my visualization:  I am at Disneyland.  I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park.  (It’s a neat little tip that works for me!)

Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”

We shall see.

Happy (late) Halloween

I hope you all had a safe, fun, night last night!

We seemed to have less trick-or-treaters, did anyone else notice that too?

Flavored Tootsie Rolls for the win! #amirite?

Remember the whole “neurologist fiasco” from a few weeks ago?

This morning, I have an appointment with a new one.

I’m cautiously optimistic.  Well, not even optimistic.  Just cautious.

I just want/need another pair of eyes to see my brain, that’s all.  Someone, somewhere, should give a rip that I have 2 rare brain tumors in my cerebellum.

Let’s see……………………………..!

Happy First of November to you too.  I want to go to Target today!

Life in 2016.

Sometimes, I wonder how many people have been forced to file for bankruptcy once being diagnosed with a life-changing disease? While I know it’s not healthy to be so focused on my dire financial situation, it’s really hard not to be.  It’s really difficult to not be depressed about my current state of affairs.  And, I see no end in sight.  My brain is now damaged.  I have a brain disease.  I’m desperate.  I don’t know what to do.

This isn’t pleasant.  This isn’t fun.  This is my life and I wouldn’t wish it on anyone.

DRAFT from 1/3/2013

This blog serves me so many purposes and it’s given me an avenue to share my story (which includes my hopes and my fears).  There are no judgements, and all I’ve received since I created this blog July 2011 I hope I can give back to others.  Sure; my life isn’t what I thought it’d be at 40 years of age – but who’s life is what they’d thought it be at XX age anyway?  It’s about making lemonade with the lemons you have and all that jazz; learning to dance in the rain…blah blah blah.  I guess it really IS about those things.  🙂

In the new year I plan to write about other things in my life, because let’s face it…my life has pretty much only been about brain tumors and cancer risks for the last 18 months.  But I’m slowly getting it that there IS more to me than my brain tumors.  Once the afternoon of July 18, 2011 arrived and the knowledge of the brain tumors was SHOVED into my life – all the things I thought I could do was shoved down the toilet.

I just want to be heard – I don’t want to be treated like I have the plague.  That’s it.  I suppose this blog is helping me to “be heard” but for the people whom I was once close to….?

Either you are on this journey with me or you’re not.  I’m seeing people’s true colors now and it’s breaking my heart!

That has been one of the hardest things of all of this.  Seeing how people treat me differently.  I don’t share much at all about CS or LDD with real life people, except for a token few (Hi L!  Love you!) – and a few people from my church who I KNOW love me from the bottom of their hearts and do not pass judgment on me.

I know that life is going on – for them and for me.  I know that we all have things going on but it’s just that I still have trouble sometimes.  I have trouble fitting in.  I have trouble connecting with people.  The people I thought were my friends.  Of course I don’t want to bombard them with, “Oh I’m seeing the oncologist today, my neurosurgeon tomorrow, and the OB-GYN on Friday…” because let’s face it.  Who really wants to hear all that?  But even just a, “Hey – Heather how’s it going with things?”  would mean so much.

I’m on the pity pot.  I get to be here sometimes.  This is who I am with what I have on my plate.  Sometimes, I have a lot on my shoulders and I decide to write it all here so I can leave it here and then get on with my life.  I miss having conversations with friends about things.  Conversations – 2 way convos.  I miss it.

These feelings have been on the surface for me for the past little while – and it’s still hard for me to understand all these changes going on.  So, I get to write.  And I get to continue counseling.

You know…with a life threatening surgery last year…I was so afraid that I would be different.

But it has changed me.  I see things differently now. I process things differently now.  This really is the Heather Show now.  And you know what?  THAT IS OK.  This is what I need.

My choice

I know I have the right to choose.  My thoughts, my actions, whether I want to delete a social media account, whatever.

Most days, I try to choose the positive.  I try to choose the happy.  I try to choose the better option.

But today is not that day.

I am thankful to have this small space on the Internet where I can be me.  No holds barred.  Me, as I am.  No filter.

I am beyond annoyed when people tell me, “Oh, you still have a brain tumor?  I thought you had that removed.”

STOP.  Just stop.

If you had made any effort to be a part of my life, you’d know my current situation.  I choose to not share too much on the most common social media platform out there.  I find it more and more comical that people choose to use that for the end-all, be-all, forms of communication.  But, I digress.

Do I need to shout it from the rooftops that I still have 2 brain tumors?  Of course not.  But, I am not sure how to respond; rather, how to hold my tongue, when people respond to me in this way.  I have found as of late that people (even some of my medical team) seem to be judging me.  Judging me, or my honesty, in what I feel and experience every, single, day.  If you’re not living my life, or choosing to ask me, if you find me steering clear of you, you’ll know why.

A brain tumor life is not fun, folks.  The emotional strain, including financial, can be all-encompassing some days.  I will just continue to gain strength to better able choose what’s best for me, until I no longer can.

 

 

 

 

Please help me reach my goal!

Hi! I’m doing another t-shirt fundraiser to help me with my medical bills. But this will also help me to spread awareness for the rare brain tumors I have AND #btsm (Brain Tumor Social Media). Please consider buying a shirt if you can. This is my 3rd attempt as my previous 2 campaigns didn’t tip because I didn’t reach the required minimum order of shirts. 

Thank you everyone for your continued prayers. I saw a neurologist this morning, which was a wasted 2 hours I’ll never get back. I will write about that soon. Good night! 

Memory; Blessed

I was pretty fired up a few minutes ago.  I was talking to my mom on the phone, and then after we hung up we texted one another a bit more.  I literally could not remember if I had had her on speakerphone during our conversation.  (Now, it’s not “what” I couldn’t remember that is phasing me, it’s that I “could not” remember.)  Not a bloody thing would come to my mind and we had just spoken on the phone about 3 minutes earlier!  And I couldn’t remember if I had had the phone on speaker?  What the crap?

THEN, I couldn’t remember my password to a website I log onto often.  I mean, I visit this website daily and I couldn’t recall what my password was.  What is going on?!

But you know what?  As I was sitting here starting to become very anxious and worked-up, somehow I was led to the “Comments” section on my blog and I started to read your comments from the first days after diagnosis leading up to the first craniotomy.  Man, what a way to knock me down a notch or two.  Where I was compared to where I am today brings tears to my eyes.  I may not have any money and am struggling severely financially, and my memory is failing, but I am not recovering from brain surgery tonight and I have a roof over my head.  My cat Kona is to my right on the arm of the chair as I type this.

I am very thankful to be where I am tonight.