Monday, December 16, 2013

Everything Changed (Part 2)

It was early September and I was really dreading telling the kids about my upcoming surgery. They are 5 and 7, and I really try to shelter them from the ugly and painful things in life. I know that the "Tiger Mom" or whoever she is would probably think that's detrimental to them, but I feel strongly about wanting their childhood to be pure and for them to always feel safe. They had heard a lot about Grandma Lisa's surgery so I knew it would color their reactions. Jeremy and I decided to talk it over during dinner. We kept it simple and said that mommy is having surgery because there is something wrong in her brain. I told them that I would be in the hospital for a little while but that they would stay with Grandma Rita during the school week and still see Daddy every day. They reacted differently, just as I anticipated they would. Alex immediately looked sad and was really hung up on me being in the hospital for a week. He kept saying, "I don't want you to have surgery".


Ava appeared reticent at first, and then said, "Well, I sure hope they are really good professionals, because they have to do a great job". They both struggled with it more throughout September and October and would often bring it up during snuggle time. Alex in particular was concerned that I was going to go to Heaven, and every time he asked, it was so hard for me formulate a decent answer, because his questions always made me catch my breath for a moment.


Some time in September Ava came across an image of my brain taken during my MRI/A. She asked what the picture was of, and I told her it was my brain. I showed her my brain aneurysm. She pointed to the various arteries on the image and asked what they were and what their purpose is.  I explained that they carried blood to different parts of my brain, which affected different parts of my body. She said, "Oh, I get it. They are like plugs and the different parts make you who you are". I said, "Yep, Birdie, you got it!".  She began describing the "plugs" to me, and I am so happy I wrote her descriptions down as she spoke. 


Oh, and that's my aneurysm in the red box.  He's my nemesis.  Telling the kids about my surgery took a huge pressure off of me, but I started thinking about all of the other things I needed to accomplish, like talking over the *serious things" with Jeremy.  I put that off as long as I could....

On another but completely related note, please lift my cousin Kiley up with your thoughts and prayers.  She is having the same surgery I had done today.  She is only 24 years old but is going to conquer this just like I did and my mom did before me. 

Sunday, December 8, 2013

Everything Changed (Part 1)

Once upon a time, things were different in my family.  I want to tell you about how things have changed, in hopes of helping someone else.

We were all seemingly healthy when we set out to vacation on Lake Michigan in June of this year. 
June 28th, 2013 in Michigan City, IN
Most of you reading my blog know that everything changed for my family in an instant on June 29th when an aneurysm in my mom's brain burst.  Ashley had just served us all breakfast on that day and we stood around the kitchen in our rented lake home talking about which plans for the day the kids would prefer, going to the beach, or a hike on the sand dunes?  Those closest to me know that I have a poor memory, but what happened in the moments that followed is forever painfully seared in my mind.  I won't share those painful details here related to my mom's story, because her story is hers to tell if she wishes.  Nonetheless, our tales are certainly linked, both because of genetics and our love for one another.  My mom has defied the odds countless times and still faces significant struggles in her future.

After my mom's initial surgery we (my two sisters, my step-dad and my aunt Debbie) all met with my mom's neurosurgeon at UIC Hospital in Chicago.  After describing details of the surgery and the risks to come she looked each of us women in the eye and implored us to be tested to see if we have brain aneurysms ourselves.  I use the term implore because she expressed how important she felt this was for our family.  She described to us that while having brain aneurysms is not typically genetic, when she sees five in one person like my mom's case, a family link is suspected.  I honestly was in no hurry to be tested, but because my sisters both set up appointments for CT and MRI/A scans I figured I better fall in line.  I honestly gave no thought to the idea that I might have one myself.

Fast forward to early August.  I was at work and had two new students and their parents sitting outside my office in preparation for me to register them for classes.  I received a call on my cell phone from my doctor's office.  The nurse at my doctor's office described that the results from my scan had come back and "showed something".  She said, "it looks like you have a small aneurysm, but don't worry too much, it doesn't mean anything needs to be done about it".  Regardless of her demeanor, hearing this was devastating because flashbacks of what I had just seen my mom go through began slicing through my mind.  I began breathing in and out loudly and quickly, and I started to sob.  I ran out of my office to my car and sat there shaking and crying.  I ran home and shared the information with Jeremy and he looked like he had just seen a ghost.  I called my sisters and they sobbed.  I could not yet bear to tell my parents.  I dried my eyes and registered my two students.  I started tearing up several times during the appointments but there was no stopping it.

I didn't have an appointment to see my doctor until later in August.  In those few weeks prior I tried to gain knowledge about treatment options for unruptured brain aneurysms.  I had so many questions and I requested to speak with my doctor about it more.  His nurse indicated that I would be referred to speak to a neurologist in town.  That neurologist's office called to say that I wouldn't be seeing him, as brain aneurysms were outside his scope of expertise.  Since I was on my own, I took it upon myself to learn as much as I could on the interwebs.  I eventually realized that there are three basic options, and I quickly decided that I would prefer to pursue the options in this order:
#1  Take a wait and see approach
#2  Endovascular coiling
#3 A craniotomy to clip the aneurysm


Jeremy, Ashley and I met with Dr. Klopfenstein on August 28th. 
Dr. Jeffrey Klopfenstein

I had only recently learned that he would be clipping the remaining aneurysms of my mom's very soon.  Dr. Klopfenstein (Dr. McDreamy) showed me a copy of my MRI and explained where my aneurysm was located.  He told me that while size isn't a huge consideration, at that time my aneurysm was larger than my mom's that burst.  He told me that he couldn't say for sure, but in his opinion, my aneurysm would burst sometime in my lifetime.  His actual words have stuck with me: "God willing, you will live for fifty more years.  I believe it will rupture within the next fifty years.  If it bursts, it will be catastrophic".  Before telling me what to do, he said that he could guess that I had thought this all over, and what did I want to do?  I said that I wasn't sure what to do, but that I had already decided to follow his treatment recommendations.  He said that it was my choice, but in his opinion, I should have it clipped.  I was disappointed to learn that I was not a candidate for coiling because of the shape and size of my brain aneurysm.  He described the typical course for recovery, indicating I would be in ICU for approximately 48 hours and in the hospital for 3-5 days.  He said I would need to be off work for approximately one month.  We threw around some potential dates for surgery and at that time I thought that Christmas break would be a good idea so that I could minimize time away from work.  I left the appointment in a haze and asked Jeremy to take me to Victoria's Secret.  I really wanted a cute bra at that moment.  I called my mom as I left the appointment and she cried when she heard I needed surgery too.  My dad called while I was in the changing room at Victoria's Secret and he also broke down as I told him.  He kept telling me how strong I was because I wasn't crying on the phone with him.   





Thursday, December 5, 2013

Throw Back Thursday

Our first vacation in Jamaica, almost ten years ago.