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.   

1 comment:

annie said...

You are amazing and I love you and your family so much that it hurts!