Decisions

Well, this is just surreal.  I'm looking at my brain on this screen, and discussing options with my neurosurgeon.  Wait.  What?  Did I just say that?  Is this my new normal?

Actually, I'm feeling really good.  Positive.  Happy.  Hopeful.  Peaceful. Safe.  I can't tell if I'm in a thick fog of protective denial....or if this is that "Peace that surpasses understanding".

Whatever.  I'll take it!

Here's what we learned today:
-  There is risk in not treating my aneurysm.  The risk is that it can burst and kill me.  Given it's small size however, the risk is also quite small.

-  There is risk in learning more through an angiogram study of my brain (inject dye into my blood, and then take more defined pictures.  The risk here is GREATER than not treating such a small aneurysm.

- There are 2 surgical options:  "coiling" or "clipping"

- Coiling is risky with the small size of my aneurysm.  There's a decent (enough) chance that the lump of coil they'd fill the aneurysm with would break loose and cause a stroke.  The risk here is GREATER than not treating the aneurysm.

- Clipping involves cutting into my skull, folding back the orbital bone around my eye so the doctor can basically lift my brain up and get to the aneurysm to clip it off.  This is the easy way to clip vs. going THROUGH my  brain to get to the problem area.  The risk here, again, is GREATER than not treating it.

Can we all just take a moment to close our eyes, breathe deep, and *shudder* with the horror 

of this thought....because, really, holy sh*#!!  

So, my path forward is to wait and have another MRI in 6 months to see if the aneurysm is growing (and if so, how quickly) or staying the same. If it's growing quickly, then we'll fix it.  At that point, coiling would be a better option too because with a bigger aneurysm, the coil is more likely to stay put. If it's not changing or changing very slowly, then we can avoid or further postpone surgery.

When I first learned of this time bomb in my brain, my immediate and consuming thought was GET IT OUT.  NOW.  I just couldn't fathom waiting around for the thing to blow.

But now, especially after learning more about the torture treatment options and their risks....I'm pretty darn happy to wait.

No wonder my heart is glad, and I rejoice.  My body rests in safety.  Psalm 16:9

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PS.  A side (and possibly entirely inappropriate) note.  The guy on the right is my neurosurgeon.  Now you tell me....does he not look like Dr. McDreamy from Grey's Anatomy?!

I've been cracking up this afternoon because after the appointment,  I just couldn't stop smiling.  I'm SERIOUSLY relieved to not have brain surgery!  But when I said, "Why can't I stop smiling?!" to my dear Luke, he said

"Maybe Dr McDreamy cauterized and healed your aneurism from the outside with his studly hotness!"  LOL!

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Priorities

There's nothing like a week spent contemplating and preparing for my own mortality to help priorities come sharply into focus.  To be perfectly honest, when I first heard the news, I didn't know how this would shake out....would the things I've been focused on still be important to me?

Sometimes, yes....my husband, my kids, my parents, my sisters and their families, my friends.

Sometimes, no....cleaning house, wondering what people think of me, losing weight.

Sometimes, surprises....I've spend the last week being intensely aware of how physically far away I am from my folks....I HATE that.

Sometimes, more surprises....business....honestly, I thought it might be one of the things that I would no longer care so much about.  But nothing could be farther from the truth.

I even had a friend ask me (after I shared my news with her), "do you still feel compelled to work your business, or have your priorities changed now?" Without pause, I answered "More compelled than ever!"

As I think about why this is, I realize the reason is my mission.  If I were only seeing to make money for money's sake, I'm sure this wouldn't be a priority for me.  If I were only seeing status or recognition or fame, this wouldn't be a priority for me.

But I'm seeking freedom.
I'm seeking abundant life.
I'm seeking to help other men and women build something that will bless their families for generations.
I'm seeking freedom and abundant life for every person who partners with me.
I'm seeking to be used by God to change people's lives.

Until now, I believed all of this was possible.  I was seeing things changing in my own life, and I know I can help others too.  But now?  The rubber is hittin' the road in my life, friends. And all my big talk in the past 3 years about time and financial freedom? I'm here to say with 100% certainty....IT IS POSSIBLE....and it's been so precious to me during this tough time.

I mean, LOOK AT MY LIFE! This business...
...Provides for my family of six. And it will continue to provide for them if something happens to me.
...Allows me the financial freedom to go to a specialist wherever he/she may be.
...Allows me to be with my family and do what is most important to me. 
...Makes it possible for me to go to the doc at any time, without asking for medical leave or taking a cut in pay. 
...Is the reason for my life being filled with supportive and encouraging and praying friends.

I can't imagine NOT having this freedom, meaning, and joy-- life is too dang short!

Bottom line:  THIS IS LESS ABOUT BUSINESS, AND ALL ABOUT MAKING THE MOST OF LIFE. And right now, while I'm acutely aware of how precious and short life is....making the most of it is my top priority.

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Aneurysm Details

Of course, the brain is a busy place....lots of blood and electricity flowing through that crazy mass of grey matter at any given moment.  According to my medical records, "A 1.5 mm diameter aneurysm is suspected at the anterior communicating artery region."

What does that mean?  Well....not a whole lot by my layman's interpretation.  It's just a basic description of the general place in my brain which contains the ugly little SOB.  It also describes the aneurism by size.  1.5 mm is TINY.  So the good news is that this was caught very early.

It's also interesting that I had an MRI 3 years ago after a family member was diagnosed with an aneurysm.  That scan was completely normal, so this a new development in my head.

I can not find a description of the shape, which seems pretty important.  There are a couple of different types of treatments, and shape plays a factor in deciding which direction to take.  I imagine the specialist I'm scheduled to see this coming week will be able to tell me more.

The family member who had an aneurysm, had a berry shape.  It'll be interesting to see what shape mine is.

As I've been sharing this news with people, a common question is "Why did you have an MRI in the first place?"

Good question - MRI isn't exactly a small deal!  The answer is I was having insane headaches when I tried to exercise.  As in drop me to the floor, I would cry or puke if I could move, hold a pillow over my eyes and moan.....insane pain.  The worst headache I ever experienced.  The first time one of those headaches happened, I thought it was a fluke.  Then it happened a second time and was even more excruciating than the first.  I made a doctor appointment to ask what she thought it might be.  Given my family history, she ordered an MRI....and here we are.

Another common question is "What's the worst case scenario?"

Well....a rupture would be the worst.  Only about 50% of people survive a rupture and a very small percentage of survivors escape without long term brain damage.  It's impossible to know when an aneurysm will rupture.  There is no set size at which there is most commonly a "blow-out", as I've been calling it.  Some people are walking around right now with a 6 mm aneurysm and are not having problems (although, they should get to a doc asap!).  Like I said, mine is just at 1.5 mm.  It's a pretty decent assumption that I'm not in immediate danger.  But who knows?  Mine could be on the verge of rupture and we'd have no way of knowing.

I don't share that doomsday scenario to be scary or morbid....thinking like this helps me keep perspective and reminds me that I don't have the luxury of sweeping this aside to deal with later.  And believe me....there are lots of times I'd like to just pretend this isn't happening.

Another frequent question is "What's your next step?"

My next step is to see a specialist this coming week.  That doctor will give me his opinion regarding next steps.  Like I said, I also have a copy of my records.  I got those documents so I can send them to a couple other doctors for their opinions.  I'm especially interested to get feedback from the rock-star who repaired my family members' aneurysms with success.

And, of course, people want to know, "How do they treat this?"

From my limited research and family experience, there are 4 options.  One - wait and observe.  If they check again in 6 months or a year and this thing is still at 1.5 mm, that would tell us a lot about the speed at which it's growing.  Two, Three, & Four -- surgery.  I won't go into details about surgery until the doc gives me advice about which surgery he'd recommend.  Needless to say, I'm not real crazy about the idea of brain surgery.  However, I'm even less crazy about the "wait and observe" path -- I just don't like the feeling of a time-bomb in my brain.


Ok - I'm done talking about this for tonight.  I can only talk so much before the veil of denial starts to lift from my eyes and mind an I start to really THINK about this.  Freaks me out!

Hug your loves tonight, friends.  xoxo Daiq

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Awake

I was awake because a little girl snuck in my bedroom, gently put her arm across my chest and her head next to mine, and said "I love you, Mama".  The sun was up.  The kids were watching cartoons.  There was the smell of fresh coffee and french toast coming from the kitchen.

I sat at the table and sipped coffee from my favorite new mug, given to me by a sweet friend for my 40th birthday.  I felt the warmth of the cup in my weak morning hands and I smelled the steam coming from the brew.  I was awake.  Awake and alive.

Not long after breakfast, we decided to take a family walk.  The kids got on their bikes and Luke and I walked.  Thomas reveled in his ability to go "super fast", but still stopped once a block to stomp in the crunchy leaves or pick a lingering dandelion.  I enjoyed every moment.  We made a wish and blew the dandelion together.

I just had to take a detour to photograph these beautiful fall....berries?  cherries?  They glowed with the joy of fall and crisp air.

I felt like I was moving in slow motion.  The green grass....the blue sky...the smell of leaves....the red skin on my cold hands.  At one point, Thomas came running up to me and said "Mama!  Did you see?  I was going SO fast!"  Then he ripped open his coat and said, "wanna feel my heart?  It's boomin' SO loud!"

YES.  YES, I REALLY WANT TO FEEL THE POUNDING OF YOUR HEART.

I looked in his eyes as I felt his strong and joyful heart beating away under my hand.  "Thomas, you are so strong and good!  I love you very much!"

He replied with that wide-eyed smile and dashed off to find his bike.

Yes, I want to feel your heart.
I want to feel the pounding of MY heart.
I want to hug and inhale the scent of my love.
I want to crunch the leaves.
I want to knead the bread and wipe the extra flour from my hands as I enjoy the smell of sourdough.
I want to chop the onion and fry the meat.
I want to season the pot of simmering tomatoes and run the noodle dough through the press.
I want to feel how my whole body cools as I clip my hair up off my neck.
I want to nibble the extra crumbs of cheese left over from assembling the lasagna.
I want to feel the little girl silky hair under my hand.
I want to admire the dimpled chin of my handsome oldest child and the wide eyed smile of my youngest.
I want to feel the rhythm of the music down to my bones.
I want to feel the heat of the fire on my shins and enjoy the smiles and giggles of my children as they munch their toasted marshmallows.
I want to take long walks while we talk about our dreams for the future.
I want to feel his hand in mine and see the tender green-eyed smile of my forever love.
I want to enjoy the relaxing soft glow of candles on the mantle.
I want to sit on the front stoop and watch the sun set.
I want to lay my head on my pillow at night and feel the silence and rest and safety of my house settle in around me.
I want to open my eyes countless more times to a little girl's arm across my chest and a gentle "I love you" whispered in my ear.

I want.... to live.

I really really REALLY want to live.

And right now, that's exactly what I'm doing.  I'm awake and alive and my senses are on fire with all there is to soak in.

News that I have a brain aneurysm wasn't exactly on my "wish list" for a birthday gift.  But today?  It feels a whole lot like it's the best gift I've ever been given.

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A New Day, A New Hope

I woke up this morning feeling so strange.

Hopeful
Joyful
SAFE

I just keep thinking, "God sees me. He knows me.  He knows the number of breaths I have left in this lifetime.  He's got me!"  Those prayer warriors friends of mine?  They're doing a good job!

No matter what happens to me, God is still on His throne.  And I am His beloved and cherished daughter.  Joy!!

My Sammy turns 8 next week - so hard to believe.  Today was her "Fabulous Friday" - an early birthday celebration for just the two of us.  We painted ceramics, browsed the bookstore, windows-shopped at the mall, had frozen yogurt treats, ate giant burgers for lunch (with HUGE rootbeer floats!), and even had her ears pierced!

It was a beautiful and wonderful day.  I can still feel her soft little hand in mine.  She's such a contradiction right now - wanting to be a big kid and to be treated as such.....but still wearing a sweet little ribbon in her hair and holding my hand.  I'm soaking up this little girl as much as I can.

Although it's not entirely fun, this aneurysm is a good wakeup call.  The leaves feel more crisp.  The coffee is more comforting.  The hugs linger a bit longer. The friends and family are more dear.  I do a better job of looking and listening and HEARING my kids as they tell their stories and share their hearts....because, really.  What if today is my last day?

We really can't ever know if this is our last day, can we?  It's a wise thing to live like it is.

I also decided to tell my business partners today.  Partly for practical reasons - there will be a time when I'm out of commission for a bit (and really, with social media being what it is, I didn't want them to hear from someone else).  But mostly because they're my friends.  I care about them and their success with such passion....I just wanted them to know that I hold them dear, that I'm fighting, that I think I'll be just fine, that I really just want them super focused on what they're trying to do, and that I covet their prayers.  I have amazing people in my life.  So blessed.

The other big decision I made today was to transfer my thoughts from my private journal to this blog.  To live this thing out loud.  Why?

1.  Aneurysms are more common than you might think.  They can be devastating, but they are also detectable and treatable!  I want to be a voice for the prevention of this disease.
2.  I want to document this journey for my children.  Unfortunately, this is a genetic thing for my family.  If one of my kids has to face this for themselves in the future, I want this to be a resource for them....maybe even a source of comfort.
3.  This blog is my story.  It doesn't seem right to omit such a big piece of my experience.
4.  I've spent this day with a tangible feeling of being cared for and protected by God.  I simply can't keep Him to myself.  If there's any part of my story that people remember, I hope it's the thread of love and hope that's been woven throughout my life.  I hope it's Jesus.  God willing, even this scary time in my life will be used for good and for God's glory.

That's how I feel today, anyway.  Tomorrow I might be back to sobbing uncontrollably and fearing for my very life.  Promise to hold me up?

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The News

Well, I turned 40 yesterday.

Luke was so sweet to take the day off of work to spend it with me.

We enjoyed a nice breakfast and cruising the isles of Costco.

We test-drove a Lexus.

We learned that I have an aneurysm in my brain.

It was a helluva day.

I'll never forget where I was when I got that phone call from my doctor.  Luke wanted to make a phone call, so he sat in the car while I went into the giant Barnes and Noble bookstore with the coffee bar in it's center.  I smiled to myself as I picked up a book about heaven and went about the business of choosing which fall-flavored sugar bomb disguised as coffee I would have.  I went for the salted caramel mocha.   This is the life!, I thought to myself.

I found a seat that would allow me a view of the front door so I could see Luke when he came in.  After about 10 minutes, he came walking in the store.  I could see his green eyes seeking me out.  His broad shoulders seemed heavy on him - it must have been a stressful call.  He smiled and sat across from me.  "I didn't know what you wanted, so I didn't order you a drink.  Want to share this one with me?", I offered.  "Naw, I'm not big on the salted caramel."  Sweet smile from his....my favorite...face.

And then the phone rang and I saw my doc's name flash across the caller ID.  I thought two things....first, I'm glad I switched to the more subtle ring tone - I could even get away with having it ring in a bookstore and no one gave me a cross look!  Next, I was surprised that I was hearing from her so quickly.  It had only been a couple of hours since my MRI that morning - just enough time to enjoy ourselves while test-driving the new Lexus GX.  

"Hello?"

"Hi Daiquiri, this is Dr. I-come-to-deliver-bad-news.  I'm calling because I have your radiology report sitting on my desk."

"That was fast!"

"Yes.  It was.  Looks like you have an aneurysm."

"What?  No.  Wait.  Ummm...no.  Ok....I....wait...I don't....I can't...no...what?"

"The good news is that it's a small aneurysm and blah-blah-blah-blah-blah-blah-referral-blah-neurosurgeon-blah-blah-tomorrow-blessing,really-blah-blah-blah...."

Spinning.  Is there something in my drink that's making me sick?  Why am I so dizzy?  Hold on to the table.  Where are those green eyes?  He's watching me.  Don't panic.  This will be scary for him too.  Oh God, I don't want this.  Oh God, please.  Thomas wouldn't even remember me.  Oh God, oh God, oh God.

"Daiquiri?  Are you there? Daiquiri, can you sill hear me?"

"Yeah, I'm...yeah...I'm here."

"Are you ok?"

"I....I...wait...I don't....know.  I don't know."

"Are you breathing?"

Am I breathing?  That's a good question.  Deep breath.  Yes, that's breathing.

"Yeah, I think I am."

"I'm so sorry to have to give you this news.  Can I answer any questions for you?"

"No.  I....I just...I don't know....no, no questions."

"Ok, well I'm sure you'll come up with lots of questions.  Remember to write them down so you can ask the surgeon, ok?"

"Ok. Questions.  I'll write them down."

I hung up the phone and looked at Luke.  

I smiled 

Why am I smiling?  Is this what a mental break feels like?   

"I have an aneurysm in my brain."  

I smiled again.  Giggle.  

WHY THE HELL AM I SMILING AND GIGGLING?  Did that damn bubble in my head just burst causing this ridiculous behavior?!

I relayed what I could remember of the conversation to him, and we sat there for a long time holding hands and staring into space.  We eventually decided to find somewhere to eat for lunch.  The rest of our day went something like,

"What do you want to do next?"

"I don't know."

I have a brain aneurysm

"Do you want to go to the mall?"

"I don't know."

I have a brain aneurysm

"Do you want to go home?"

"I don't know."

I have a brain aneurysm

"Want to see a movie?"

"I don't know."

i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm i have a brain aneurysm....

We finally made our way home, and I decided to walk around the block to pick up Thomas from my friend's house.  Luke offered to drop me off, but I wanted the air.  It felt good to walk.  It felt good to feel my heart beat, to feel my hair move with the gentle breeze.  I could almost feel the blood pumping through my brain.  My brain.  Blood.  Life.  Breath.  Gentle breeze.  Oh God, how can this be?

I knocked on the front door and could hardly wait to see my baby boy.  He was all smiles and energy and jumping.  My phone rang again.  It was my friend Heather.  We'd been playing phone tag all day, so I stepped out onto the front porch to answer the call while Thomas put on his shoes.

"Hey!  We finally connect!  How are you, lady?"

"Well.  Ok."

"How did you scan go this morning?"

And the floodgates opened.  I managed to choke out the words, "I have a brain aneurysm"....but mostly I just sobbed and sobbed and sobbed.  I had the fleeting thought that I might throw up right on my friend's front porch if I didn't calm down.  

My sweet friend on the other end of the line was FORCEFUL in her optimism.  I started going down the worst case path, and I can still hear her voice as she said, "DAIQUIRI LISTEN TO ME.  NO.  WE ARE NOT....NOT!...GOING THERE.  YOU ARE GOING TO BE FINE.  DO YOU HEAR ME?  YOU ARE GOING TO BE OK."

I don't know if she was actually hollering at me, but whatever she was doing, it was working.  I was hearing her voice over the "I have a brain aneurysm" dialogue that had been on a constant repeating loop in my mind for the past few hours.

Then, I told my friend who had been watching Thomas.  It almost felt worse to tell people because it made it so much more real.  It was out there.  I was saying the words.  Out loud.  

I have a brain aneurysm

As Thomas and I walked home, my Dad called to wish me a Happy Birthday.

"I'm so sorry, but I have to drop a bomb on you, Dad."

I have a brain aneurysm

He would tell Mom for me.

I have a brain aneurysm

I walked and I talked to my Dad and I sobbed.  I could hear the tenderness in his voice, and it made me cry even harder.  I didn't want to think about how hard and scary this must be for him.  I didn't want this to be happening.  

I was just so damn terrified.

And I couldn't think.  Couldn't pray.  Couldn't do anything but be terrified and imagine all of the worst possible outcomes.  

Will they burry me or cremate me?

Will the kids understand that I didn't choose to leave?  Would they know that I wanted to stay with them, but just didn't have control?

Would Luke fall in love with someone else?

Would my babies call another woman "mom"?

Luke and I had a deal - we agreed to grow old together.  I don't want to be the one to break that promise.

As these thoughts threatened to drown me, I wiped my eyes and gathered my strength....and went to watch Clara play her last basketball game of the season.  Then, we took the kids out to dinner for a birthday celebration.  I even had the waitress take our picture.  Surreal.  I keep looking and looking at the picture....can I see my feelings in that picture?  No.  I don't think so.

By the end of the day my Mom, Dad, and Sisters all knew.  It didn't feel better to tell them.  It didn't feel better to discuss plans with them.  I didn't want to be the cause of their pain and fear.  I didn't want to talk about this at all.

As Luke and I laid in bed and held hands before sleep came, I said "Isn't knowledge a strange and powerful thing?  Exactly 24 hours ago, we were in this very same spot drifting off to peaceful sleep and looking forward to a fun day today.  And I had an aneurysm in my brain that we didn't know about.  But now?  Now that we KNOW?  Everything seems to have changed....when, in fact, nothing but our knowledge of the facts has changed." 

"Yeah............I love you Daiq."

"............I love you too, Luke."

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That was yesterday....an overwhelming tidal wave of fear and emotion. 

Today, I’m numb.  I have a headache from all the crying I did yesterday (and I'll never quite feel safe about having a headache again).  I’m thinking practicalities.  Is my will updated?  Do I have a living will? Which doctor should I use to do this procedure?  Should I tell my business partners about this, or will it become a distraction for them?  What can I do to ensure that my business keeps plugging along for Luke and the kids if I die?

Will Thomas even remember me?

Who will do Sammy’s hair?

Who will read with Clara?

Who will teach Ben to dance?

I don’t want to die.  I don't want brain damage.  I don't want disability.  I feel absolutely terrified.  I could sure use a little bit of that “peace that surpasses understanding” right about now.

                                  *************************************************

Evening, same day.  I'm calling on my prayer warrior friends. I don't want to burden them, but I can't carry this myself.  I'm falling to pieces here.... 

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