12 MINUTES

The morning of December 26th started with a high risk OB appointment that went great.  Pajamie was still growing well and looking very strong.  I had to get my blood taken for my TSH levels and then we headed down to get another MRI.

The MRI only lasted 15 minutes.  It was much different than the first time I had one.  In October I laid in the machine completely drugged on nausea medication focused solely on not getting sick.  This time I felt great and my mind raced.  Well, I should say, it prayed.  I prayed over and over again that everything would come up clear and my scans would show healthy blood reabsorbment.  After my MRI, Patrick and I quickly inhaled lunch and headed to my neurosurgeon appointment.

We only sat in the lobby for a short time before we got called back.  I was anxious about the appointment but I honestly was expecting good news.  We had just gotten great news from the OB team, I felt great, and I was improving everyday.  I was sure that all these things meant good news.

My doctor entered the room shortly after we sat down.  I immediately sensed that he was feeling rushed.  He was young, mid- thirties, and very boisterous.  I noticed an air of arrogance from him.  He introduced himself, shook my hand, and took a seat between Patrick and I.

He opened the conversation by asking how I was feeling.  I began to tell him about all of my improvements.  He let me say about two sentences before he interrupted me.  Apparently, he didn't really care.  Here is what he said,

"Well, you are very lucky.  You are very lucky you are not dead.  You are very lucky that you do not have life sustaining tubes coming out of everywhere.  People with this large of a bleed in the brain stem do not typically turn out well.  I don't know why you were sparred.  I can only assume it was for your children.  You have a cavernoma malformation in your brain stem and you need to have surgery very soon to remove it.  I am thinking we will do it 3-6 months after your baby is born so that you can get to know her first."

My world stopped.  My hand covered my mouth and I said, "Holy shit."  That is all I could say.  That was all I could think.  Patrick stood up to gather himself and our doctor responded by saying, "Whoa bud, take a seat."  Bud?  Are you serious?  You just told us that I should be dead and need to have brain surgery and you are calling him bud?  What?  You have to be kidding me.

I honestly think that was all the doctor planned on saying to us.  I really think he was ready to get up and leave at that point.  Appointment over.

I sat there, shocked.  I just kept repeating what he had said over and over again in my head.  I was trying so, so hard to hold it together.  I did not want to cry in front of this asshole.  He did not deserve to see my heart after he had just thrown it on the floor and stomped all over it without a second of hesitation.

Thank God for Patrick who kept his head on straight and started asking questions.

Q: What is a cavernoma malformation? 

A CM is irregularly shaped blood vessels all gathered together in the brain.  They look like a grapes on a vine and are commonly referred to as popcorn lesions.

At this point, I am trying to listen very hard to the explanation of what my condition was.  I couldn't.  I was still stuck on, I should be dead. 

 Q. How long has she had this?  Can our kids have it?

She has had it since she was born and her form is not the familial kind.  This is the only one she has.  Your kids are fine. 

With this question, I started to come to a little bit.  Holy shit, my kids!  My kids could have this!   I could have given this to my kids!  I instantly hated myself and hated God.  It was one thing for me to have to deal with it, but my kids?  My innocent, beautiful babies.  No, that was beyond forgiveness.

 Q.  Why did it bleed now?

CM's can be in the brain forever and never bleed.  Many people have them and never know.  Many people have more than one in their brain.  Hers in in her brain stem which is a very dangerous area of the brain.  It could have bled for any reason at any time.  It was nothing she did that caused it to bleed.

 Q. Can we see her scans? (This is where it gets good again.)

(As he turns to the computer)  Your situation is, well, it's a cluster fuck.  The CM has begun to wrap around healthy tissue so it will be very difficult to remove.  You will have severe deficits after the surgery.  You will not be the same person. 

By this point I was struggling to hold it together.  I wanted him to leave.  I wanted to throw up.  I wanted it over.  I couldn't believe this was happening.  It had to be a dream.  I was going to wake up and it would have never happened.  I just kept looking at the scans of my head and willing for my name to change at the top.  Or for him to say, "Oops, wrong person."

I will never be the same after.  I will never see my kids play sports, drive, have their first boyfriends, go to prom, get married, have kids....I will either be dead at this point or a vegetable in the nursing home.  My kids are not going to have a mom.  Patrick is not going to have a wife.  I have 10 months left of life.  10 months.

Q. How would you do the surgery?  Have you done a lot of them?

(With demonstration)  I would slice you open here, open you up,  and go straight to it.  I have done many of these.  I am one of the only doctors in Iowa that performs this surgery.  I just completed one on a 22 year-old that got married three months after the surgery.

It was hard enough to hear how the surgery would be performed, but to see him bend over, pretend to slice down his neck, and then pry open his skin was just too much.  I was terrified.  It felt like my heart had been ripped from my chest and my body was just numb.  I really wanted to leave.  I really wanted it to be over. 

Q. What would be the hospital stay for something like this?

Recovering from the surgery would only be about 6 days tops in the hospital.  The surgery is not recovery intensive, the therapy is.

I was at least happy to hear that the surgery recovery would be a bit easier.  Although easy really means excruciatingly painful in the world of brain surgery.  But at least it would be short lived.

Q. What kind of deficits are we looking at?

It is hard to tell.  You could come out with more severe versions of the deficits you have now or you can come out a vegetable or anywhere in between there.  Your head is a cluster and I do not think you will be the same after.

Once again my mind just flipped through everything that I would miss or not be able to do anymore.  I would never be me physically again.  But I would also never be me mentally.  I was going to lose the ability to think, remember, possibly speak and even breathe.  I was literally just going to be a body that everyone was going to be burdened to take care of.  Why was this happening?  What did I do?  These thoughts just put me over the edge.  I began to cry. 

Q. Can we get a second opinion?

Well yeah bud, but your head (as he turns to me) is a ticking time bomb.   If you were older, I wold say lets monitor it. But you are young with kids.  We need to get it out as soon as possible.  I say lets wait until after you have the baby and give you some time.  I would like to go in 3-6 months after that.  If you were my sister I would be telling her to do the surgery and do it now.

After this we just sat in silence for what seemed like a year, but was actually only ten seconds before he stood up ready to excuse himself.  He told us to call back after the baby was born so we could discuss a surgery date.  By this time, I was crying.  As he left the room, he put his hand on my head, shook my hair like a dog, and said, "Hang in there bud."

If I wouldn't have been completely spinning at this point I would have roundhouse kicked him right in the face.  Hang in there bud?  Shaking my hair?  Was I two?  Honestly.

But instead he left and all the emotion that I had so desperately been trying to hold in exploded out of me.  I was sobbing uncontrollably and I couldn't catch my breath.  I had been so naive.  I was so convinced that this wasn't anything serious and this was just going to be something that had happened and I wouldn't have to worry about it again.  I was just going to keep getting better.  I was so naive.

Patrick just held me.  The nurse came in right after and tried consoling me.  She said sorry and that he was an amazing doctor and "If  I ever had any questions, call.  He would answer them in a heartbeat."  I looked up at her and said thanks, but I was really thinking, "Are we talking about the same person?"

12 minutes.

My appointment took 12 minutes.  12 minutes to hear I should be dead and I would either be dead or severely disabled in 10 months. 

12 minutes.

After my appointment we had to go directly to the nueroopthamologist.  I cried the entire time.  I replayed the appointment in my head.  I thought about my family.  I am sure you could imagine.  What would you think about if you had just heard you were going to die?  I have no idea how they even assessed my eyes.  I could barely see through my own tears.

My eye appointment was the last of the day and we headed home.  I laid my seat down in the car and tried to rest.  I was exhausted.  We had been gone for 10 hours and I had been put through the ringer.  I dreaded telling my family.  I just cried.  Patrick had been amazingly strong up to this point.  He spent his time comforting me.  But, I remember looking up at him when he was driving and watching him cry when he thought I couldn't see.

I just couldn't take it.  I wasn't strong enough for this.  I couldn't do this.  I had to do this.  I still had three girls at home and one on the way that deserved a mommy for the short amount of time they were going to have her.  I had to do this.

Patrick had called my brother and sister-in-law to meet us at the house.  They were to take care of the kids while we talked to my parents.  When we got home Patrick's brother and family were there dropping stuff off as they headed home from Christmas visits.  I don't even know if they knew what was going on.  I walked in the door and was greeted by my sister-in-law.  She gave me a hug and asked how it went.  I immediately started crying.  I sat down on the bench inside the door to take off my shoes and hid myself from my parents.  She kept rubbing my back, telling me not to cry.  I couldn't stop.  I had to get this over with.

So I got up and walked across the kitchen, hugged my mom, and we sobbed together.  My in-laws and Patrick cleared the room and took the kids downstairs.  My Dad came over and started rubbing my back and crying until I eventually gave him a hug.  I then sat down at the kitchen island and told my family.  I spared them the details and essentially just told them what I had and that I would need surgery.  My parents just sat at the table and cried in disbelief.  My dear brother was once again very strong and did an amazing job talking me through it and calming me down.

My parents were asking many of the same questions that we did.  They wanted to know if I now had to be bed ridden, if they were going to take the baby early, why they couldn't do surgery now, etc.  It finally got to the point where I just said, "I am still the same person I was 10 hours ago.  I am still getting better and I am still here.  I am still the same person,."

It was inconsiderate of me to dismiss their feelings like that especially since I had the entire afternoon to process it.  But I just couldn't do it anymore.  I didn't have any tears left.  I needed to try to move on and there was no way I was ever going to do that if my family wasn't right there with me.

I was still the same person.  It was time to move on.