Everything Changed (Part 5)

My surgery began at 7 a.m. on November 12th, 2013.  I asked my sisters to write this blog entry about what happened during my surgery.  Here is the account of their experience, as written by Ashley with Tara's experiences also shared.

As my family and I stood around Mindi in the moments before her surgery, we took turns kissing and hugging her, reassuring her that everything would be okay... everything will be fine sissy, I kept telling her… But because of the way I think, I couldn’t help but wonder if the words I spoke would turn out to be true. I didn’t know the answer to that, though. In fact, no one knew. I stood in that room with my head down, talking in my head to God, like I typically do, kind of like he’s a close friend of mine. I reiterated to him, as selfish as it may have been, that I needed my sister still, here on earth. I reminded him of how close we are not just as sisters, but best friends. (And I quickly thanked him for that, as well as for giving me such a tight-knit, loving, caring, forgiving, call-each-other-every-day, say-I-love-you-every-time-we-hang-up, kiss-each-other-goodbye, tell-one-another-absolutely-everything, kind of family.) To be honest though, and I’m not proud of this moment, as I walked away from that corridor and she was wheeled away to surgery, I tried my best to negotiate a deal with God, telling him I’d do absolutely anything in the world for Him if he could just swap us out real quick and I could have the surgery instead of her. I knew it was crazy to beg Him for such a thing, and I know we aren’t supposed to ask God for things like that, but I was desperate.

There were three things that kept me rational as we waited in the family room at OSF during her surgery:

1. One of my best friends since junior high, and a top notch nurse anesthetist, Leigh, would be in surgery with my sister, reminding every nurse and doctor in that room that this patient was VIP. In addition to that, my sister gave Leigh permission to update us regularly via text message during her surgery, so we had some inside information on her actual status, which proved to be much more calming to our nerves than the calls every hour or two from the nurse in surgery, who always just stated that, ‘everything was going fine.’
2.  My sister had a rockstar neurosurgeon, (and he just happens to be Peoria’s version of Dr. McDreamy), that had already proven himself through my mom’s brain surgery.
3. My sister is strong. She didn’t know it or feel it right then, but I knew it. She gets that from my mom, who just had her brain surgery just a few weeks before Mindi’s, and kept her promise to be there for her daughter on the day of her surgery.
   
   
   
   
   

After sitting in the family waiting room for what felt like an eternity, I received the first update from Leigh.

Even though I knew they would have to part her hair to make a clean, straight incision, this text hit me like a ton of bricks. This was really happening. A piece of my sister’s skull was about to be removed. I leaned over and showed this text to my other sister, Tara, and we both just lost it. So many questions and crazy thoughts swirled around inside my head. Would she wake up? If she woke up, would she be able to talk?  Would her voice be the same? What if Dr. Klopfenstein’s hand slipped? Or what if a nurse bumped his hand on accident? How could Jeremy raise these kids on his own without their mom? Would Jeremy still come over to my mom’s for Christmas with Ava and Alex? Who would Alex get his back tickles from? Who would Ava tell her secrets to?  And as you can imagine, my unanswerable questions persisted through the remainder of her surgery. 

Tara and I went down to get a coffee to pass the time and talked very little. When we did talk, it was only about how we couldn’t believe what was happening to our sister at that very moment. Neither of us spoke about the thoughts we were having, or what we thought could happen. Months later, Tara described to me that going through the two ordeals, Mindi’s and Mom's surgeries, have been the most trying experiences she has ever been through.  She also said that seeing such close family members in pain and knowing that these minutes could truly be our last was nothing short of terrifying to her. She told me about when she first arrived at OSF that day, and she met Mindi and all of us up in the waiting area where lab work is done. Just a few short minutes after she had arrived, Mindi was whisked upstairs and separated from all of us.  It was at this moment that Tara had a feeling of overwhelming sadness come over her. As she watched Mindi get on the elevator by herself, Tara just felt empty.  Emotionally she was drained.  This was it. The moment everyone wanted to fast forward past.  She talked  to me more about her own fears and overcoming them to be strong for Mindi that day, specifically because we only were allowed to visit Mindi one at a time right before she went into surgery. Anyone who knows Tara well, knows that she doesn’t fare well alone and doesn't like to reconnoiter unknown areas on her own.  But at that time, she just kept reminding herself that whatever uncomfortableness that she is feeling is nothing compared to what Mindi (and Mom) have gone through. 

The next few updates came in from Leigh, and I even tried to make her answer my questions. (Leigh is in gray and I’m in blue.) 

The next couple of hours went by SO. INCREDIBLY. SLOWLY. Updates came in regularly from Leigh though, letting us know exactly what was happening when and why. And then this text came in.

I couldn’t believe that a couple of hours had gone by and the aneurysm hadn’t even been seen yet, let alone clipped. I guess I never put much thought into how much time and skilled, slow and steady hands it might take to get through a person’s skull without messing anything up.

At that exact moment, Klop was staring right into the eye of this thing. This terrible thing, that not only my 36 year old sister has, but my cousin has one of, my aunt has two of, and my mom had five of. This thing that on June 29, 2013 burst in my mom’s brain and forever changed each and every one of my family members’ lives in ways I’ll never be able to articulate.

So naturally, my response back to Leigh (in my head) was, “CLIP THAT DAMN THING AND GET OUT OF THERE!”  I didn’t type that to her though, because I knew I wasn’t in control of anything at that point. Before I could compose a more rational response to Leigh, she texted me again.

Did I read that right? Was my sister potentially months away from her aneurysm bursting? She’s only 36 years old. Some people with aneurysms just ‘watch’ these things their whole lives, especially younger people. And that was an option that she was very open to before talking to Klop the first time. Even after talking with him, she considered waiting to have her surgery in the summer, when she was already off from school. But would she have made it to summer alive? The answer to that question is by far the most frightening thing I’ve ever faced in my life, and gives me chills every single time I think about it. The answer is probably not.

Leigh texted again shortly thereafter.

We were able to talk with Dr. Klopfenstein really quickly after the aneurysm was clipped because a resident was closing Mindi up. Before Klop arrived in the room though, we all held hands in that small meeting room, and my dad led a prayer. He started to cry as he thanked the Lord for the strength that he has given our family, and for how close we have all become through all of this.  

When Klop came in, he drew a picture of my sister’s aneurysm and explained to us that some small areas of her vessel on the aneurysm were ‘as thin as wet toilet paper.’ Because of where her aneurysm was located (right on the V part of two vessels coming together), he wasn’t able to just clip it. He had to narrow one of the vessels and ‘recreate’ the wall of that vessel using three titanium clips. It was either that or clip it normally and leave the high risk of it bleeding again due to the wall not being strong enough to handle the blood pressure.  Narrowing her vessel is not ideal, but it was the lesser of two evils.

He explained everything in detail and answered all of our questions, and let us know we’d be able to see her in about an hour. We were all really freaked out by the type of aneurysm she had and the way he had to fix it, but still considered the surgery a success. We were all just ready for her to move on to the extremely long and hard recovery phase.

Seeing my sister in recovery was torturous. She had the absolute worst pain/most discomfort/eyes swollen completely shut/vomiting and dry heaving/not even a wink of real sleep/horrible nightmares/scary sounds from other patients/hourly poking and prodding from nurses and doctors/no shower/no food/no drink/and just a state of total shock from what could have been. 

Everything Changed (Part 4)

November 12th finally arrived, and oddly enough to me, the day dawned like any other.  Of all the things I have learned throughout this experience, one stands out the most:  it's so surreal to be going through something in your own life that feels earth-shattering, but when you look around you realize that the rest of the world (and everyone in it) continues on in their own predictable rhythms and patterns.  Surprisingly, I slept fairly well the night before considering my anxiety level.  Jeremy and I got up around 4 because we had to be in Peoria before 6.  My surgery was slated for seven.  On the way to Peoria I clutched a verse from the Bible given to me by Tami Qualls.  She had brain surgery several years ago and gave me some very useful tips.  Most of all she reminded me to be my own best advocate as a patient and to let everyone involved in that surgery know all that I have to lose.  She gave me the idea to chant my children's names rather than counting backwards from ten when I receive anesthesia.  The verse she gave me just spoke to me and fortified me when I read it. 

When I arrived for pre-surgical testing I became utterly frightened and started to cry.  I kept crying while my blood was drawn and cried even harder when my sisters and dad arrived.  They were very supportive but couldn't take away my fears.  After an elevator ride and walk through OSF's hallways I parted with them and went into a little room with a hospital bed and curtain.  The nurses asked a lot of questions and expertly hooked up my IV (I'm a notoriously tough stick so this was refreshing).  They attempted to put me at ease and didn't make me feel like a freak show for continuously crying.  It frustrates me that I can't stop crying when I want to, but obviously my body knows what I need more than my brain does.  Dr. Klopfenstein stopped by and asked if we could pray together.  After more medical formalities the nurses allowed my whole family to be with me before my surgery.  They are only supposed to allow two people at a time to be present but it meant the world to me that they broke the rules for my family.  I may be thirty-six years old but at that time I needed my family more than I needed air to breathe.  My mom, step dad, dad, Tara, Ashley, and of course Jeremy were all there, most of them crying periodically as well.  It was so hard for my mom to be there with me as she was still recovering from her own brain surgery from a few weeks before.  She vowed to be there *no matter what*, and came through on her promise even though she was weak and ill.  We all hugged and talked and when a pastor entered, we prayed again.  The energy in the room was palpable; I felt that the strength of my bond with my family in that tiny space was all-consuming.  It also heartened me to know that my dear friend Steph was down below in the waiting room, keeping vigil.  The nurse anesthetist (and my sister's own dear friend, Leigh) entered and I knew it was nearly go time.  She offered to give me something to relax before going in and I agreed.  Each member of my family gave me one last hug and hugged and kissed one another.  As my dad left me I saw him turn around and walk back for one last look at me before surgery.  He looked so sad and I wished that I could make him feel better, but I knew there was just nothing left to do or say.  I was wheeled back and the nurses described some of the things I was seeing in the surgical suite.  I was already feeling drowsy from the cocktail Leigh administered but I was very cognizant of the promise I made to myself to chant "Ava, Alex.  Ava, Alex." over and over again as I was put under.  I began saying it and only got it out a few times when I was silenced as the mask delivering anesthesia was placed on my face.  Leigh looked me in the eyes at that very moment and said, "I hear you, Mindi". For that one second in time and my final moment before surgery, I felt safe.