Four Days

The night of the December 26th I sat down with my iPad to do some research on my condition.  The 12-minute appointment hadn't really answered them for me.  I typed "Cavernous malformation cavernomas in the brain stem" in the Google search box.  I read one article that chronicled the diagnosis, recovery, and prognosis of four different people.  They were not doing well.  Hoping the next article would be a bit more positive, I clicked on one that was a basic description of my condition.  I read through the entire thing.  When I had finished, I set my iPad on my lap and thought, "Well that's it then.  It is just a matter of time before I am severely disabled or dead."  It wasn't just the asshole doctor telling me anymore.  I now had different research from different resources to back up what he had said.  To make matters worse, both articles mentioned repeat bleeds, the rarity of my condition (0.2%),  and that many surgeons would not even operate on this kind of condition.  My arrogant doctor had not told me inoperable.  After all, removing a CM from a 32 year-old pregnant woman would be quite the notch on any neurosurgeons belt.  But still, the fact that many considered my condition inoperable terrified me.  There was a chance this could never be removed.  I could be bothered by numerous bleeds throughout my lifetime.  I could have small bleeds that slowly disabled me over time or I could have a major bleed that would leave me a vegetable or dead.  I could be inoperable.  I did not do another bit of research after those two articles.  I know that knowledge is power.  But all knowledge was doing to me at that moment was making me even more hopeless.
    
The next morning  my Facebook page, personal messaging, and text/voice mail was full of messages from my friends asking how the appointments had gone.  Considering my willingness to write about my experiences, I think many people were anxiously awaiting an update on how they all went.  After responding to all of the messages, I sent out this post to all my Facebook friends who had been following my progress.

Facebook post from December 27, 2013

As you all know I had four very important appointments in Iowa City yesterday. I wish I was about to report good news, but unfortunately I am not.

We found out yesterday that I have a cavernous malformation cavernoma in my brain stem. It was confirmed that I was born with it and that it is not a genetic issue. I will undergo surgery to remove it shortly after Pajamie is born. Even though Pajamie is looking exceptionally healthy, she will be delivered via C-section for her and my safety.

I am terrified.

I know that all of you, being the amazing people you are, are going to immediately ask what you can do to help. Right now I need some time to grasp this and get my boxing gloves back on. In the meantime I ask that you please:

1, Cherish yourself. Treat your mind, spirit, and body with as much love as you've got. Eat healthfully and exercise regularly. You just never know when being individually strong is going to be your life support.

2. Love others. Never be afraid or bashful to share your feelings. If you love someone, if they inspire you, if they are just simply awesome, TELL them.

3. Do Better. Be Better. This was just a silly thing I said the day after my stroke that has blossomed in to something that I hold dear to my heart. Please take a minute to really think about what this means to you in your life. Be the good in this world. It needs a few more people to shine a light. Shine yours bright.

This post was exceptionally difficult to write.   I didn't want to sound somber, but yet wanted people to understand the severity of my condition.  I wanted everyone to understand I needed some personal space, but also that I was trying to accept the news and hold strong.  Finally, and most importantly, I wanted people to learn what I wish I had more deeply appreciated in my past.  I hoped that people would think of my situation, put themselves in my shoes, and honestly reflect upon what really mattered to them.  My prognosis was serious, life threatening, discouraging, and depressing.  However, I wanted it to be inspiring, positive, and motivating.  I didn't want to be pitied.  I wanted to be regarded for my strength and ability to overcome.  I had to make this situation as positive as I could otherwise I was never going to make it through the storm.  I needed everyone around me positive too.

Doing that was much easier said than done.  The next four days were what I would envision hell to be like.  No matter how fiercely I tried I could not get, "You should be dead.  You are a ticking time bomb." out of my thoughts.  Numerous times during the day I would think, "Is today the day I die?  Will it be in the next five minutes?  Will this cause it?  Will this be the last thing I see?  Will this be the last thing I say to Patrick?  My girls?  My family?  I will never get to know Pajamie; she will be a complete stranger to me.  Even worse, I will be a complete stranger to her."  It was debilitating.

I would break down sobbing in the middle of the night, in the shower, after a hug from Patrick, after my kids did something adorable, etc.  No matter how hard I tried to push it in the back of my mind I couldn't.  I just couldn't help but think of all the things I wouldn't be able to see or do in the future.  My heart literally broke every time I thought about Patrick living without a wife or my girls without their mommy.  It hurt so deeply to think of the pain I would cause them by being gone.  Or to think about all the times they would have to wish for me to be there throughout their lives.  I just couldn't bear the weight of causing them so much unhappiness and loss. 

And poor Patrick.  I tried to hide my crying from him and the girls as much as I could.  But it was hard to hide sometimes and he would be the unfortunate witness to my breakdowns.  Just the look on his face; the look of sadness, defeat, worry, and helplessness was enough to send me into an even stronger crying bout.  I could see the pain I was causing already and the worst hadn't even happened yet.

Over the four days before my second opinion, I tried to take everything in as much as I could.  I  would look at my kids and study their faces intently.  I wanted to burn their image in to my brain.  I wanted to remember Seeri's nose crinkle when she smiled, Jaelyn's big blues, and Linden's dimple on the right side of her face when she smiled.  I wanted to burn the feel of Patrick's touch on to my skin.  My family was perfect and I didn't want to forget them if my condition worsened.  I selfishly wanted to take it all with me.  My emotional state drove my only Facebook post during those four days.

 Facebook post from December 29, 2013

I put Jaelyn in timeout, took something back to the bedroom, and came back to find this. These are the moments to live for.

I had been exceptionally strong and accepting of what had happened to me up to this point.  But now I was somber, negative, hopeless, mad, frightened, and discouraged.  I felt alone.  I didn't feel God's presence.  Instead I despised Him.  I was so angry and betrayed that He would do this to Patrick, my girls, and my family.  I had never felt that way before.  I also had never been at a point in my life where I couldn't make the choice to change my attitude, feelings, or behavior.  I am a firm believer that EVERYTHING in life can be influenced by personal choice.  But everyone has their limit where they just hit empty.  That top of the mountain where it looks like there is no way down or that box where it looks like there is no way out.    I had officially hit my limit.