The two weeks leading up to surgery were interesting, for lack of a better word. My blog posts during that time say it all really. I didn’t leave much out. I tried to be normal and stay busy; housework (I would be a millionaire if I got paid for this), parent our girls (thank goodness they were oblivious), binge watch Netflix (Parenthood is amazing), respond to Facebook and Instagram (this alone kept me busy--I had tons messages and notifications that kept me smiling). My parents, family, and friends also made an effort to call, message, or visit often. Patrick and I spent a lot of time together and tried hard not to have our entire relationship become consumed with the agonizing decision we were forced to make.
Those were all great distractions during the day. At night, though, when everyone was sleeping and the house was still, I struggled. I would toss and turn in my bed and my mind would race. I always wrote my blog posts when I finally gave up and released my thoughts. It was the only way I could sleep.
Looking back on that time, the road to surgery was officially paved when Patrick and I called the Barrow Brain Institute to discuss my options and become more familiarized with the institution. The girls were gone and I was spending the quiet time resting in our room. Patrick joined me and we nervously dialed the number. At this point, Patrick was still unsure about surgery and was more so calling to feel them out. I, on the other hand, was in the car, buckled in, engine started, and in drive.
I had researched this for two+ years and had been a part of a brainstem surgery survivors support group. I knew, even though I entertained Dr. Lanzino (from Mayo) as a surgeon, that I wanted my surgery performed by Dr. Spetzler in Arizona. He was the best and I knew people that he had operated on. My condition was incredibly rare and he had performed over 500 of them. We struggled with the decision to go to Arizona for a bit because Mayo was close to home and that was incredibly appealing. Plus, Dr. Lanzino is downright amazing. He is the only neurosurgeon so far that I have met that actually behaves like a normal human being--no ‘I don’t have time for you’ demeanor or lack of emotion or connectedness. I mean, he flat out told Patrick and I before we left Mayo after my second stroke that he viewed us like his children and he would prefer for us to go to Arizona. He expressed his confidence in his skills, but wanted me to have the best. His sincerity and kindness struck every heart string Patrick and I had.
Back to the phone call….Patrick explained our situation, asked a million questions, and began to discuss possible dates once we were connected with Dr. Spetzler’s office. We were disappointed and worried when we were told that March 18 would be the earliest I could have surgery.
We had learned through all of our previous discussions with surgeons and extensive research that waiting an entire month post stroke would not be favorable for a positive outcome. Much blood from my stroke would be absorbed back into my brain and my CM would begin to settle and intertwine back within my healthy brain tissue by then. The blood from my stroke had caused my brain to swell and push my CM away from my healthy tissue. My CM would be much easier to pinpoint and remove for my surgeon and, in turn, reduce the chance of numerous and/or permanent deficits to me if my surgery was performed as soon as possible.
Patrick asked me if I was okay with March 18 and my response was immediate panic. My body started to quiver, my heart began to race, and I began to sob to the point where I could barely breathe. My reasons against waiting that long flew out. My speech couldn’t keep up with how fast my mind thought. Patrick expressed my concerns and the secretary began take a closer look at Dr. Spetzler’s schedule.
Soon thereafter, we were told that there was an opening on March 4. BUT, Dr. Spetzler would be leaving for a family vacation the next morning and would not be around for the first week of my recovery. Patrick was hesitant, but I said, “schedule it,” without a heartbeat of hesitation. I don’t remember the rest of the conversation as everything went quiet. I laid back onto my pillow, looked at the ceiling and thought, “Holy shit. Holy shit. Holy shit. What did I just do? God, you got me? You gotta take over for a bit.” Once Patrick hung up the phone, we hugged and cried together. The world around us came to a complete halt.
The next week was spent making preparations to leave for Arizona, organizing childcare for every possible scenario, and spending quality time with family and friends. It was difficult to plan for this even though we knew this day would eventually come. There were so many unknowns: What would I be like when I woke up? How long would we be gone? Where would I do my inpatient/outpatient therapy? Would the girls come visit us in Arizona? We were prepared for a month with plans to reevaluate once we reached it. I can say with absolute certainty that we would not have survived without the support and help of our army.
And an army we have---our family, friends, neighbors, employers, NLXF, Holy Family Parish, and complete strangers. We are incredibly blessed. Our dear friends even threw us a party before we left. complete with Buffalo Wild Wings and snacks galore. We played Battle of the Sexes (the girls won) and enjoyed each other's company. It was just the type of laid back, normal, and fun night that we needed before we left. It is something Patrick and I will never forget.
Two weeks went by faster than a blink of an eye. I was terrified as to how the movement of a plane and pressure of its cabin would affect me physically, so we decided to road trip it. My parents came with us. The amazing people at Witham Ford donated to us a Ford Transit, which I affectionately named Bot. We left at 5 am on March 2 in a snowstorm, of course.
The drive started great despite the weather. We stopped in Des Moines to be surprised by Ryan Downs, the owner of NLXF. His energy and positive outlook on my surgery gave my family and I a much needed confidence boost and peace about the journey we were embarking on. I feel like our drive would have been much different without that visit.
I also spent the first part of our trip eating the junk food (lemon heads, Doritos, beef jerky...all my faves!) and reading the letters that my close friends and NLXF trainers had given me. Ah, man. I cried. And I cried. And I cried some more. My inner circle are some very, very special people. Reading their words gave me strength. They also inspired me. I will never forget the words of one, “Be an example.” Be an example for others who are struggling. Be an example for those who have yet to struggle. This was probably one of the most influential pieces of perspective and advice I have ever received. I cannot tell you how many times I have recited that in my mind in the last year.
The rest of the first leg was spent laughing (mostly at my Dad for his ability to sleep anywhere on a dime). We were also very quiet too; bored from the drive and lost in our own thoughts. We stopped halfway to spend the night in Delhart, Texas. I have never been so happy to be out of a car! That night in our hotel consisted of Patrick and my parents watching the Hawks and me filling out forms online for my surgery registration. We called it a night early so we could get on the road right away in the morning.
Our second day started with a quick Google search to see how far away we were from Waco. It would have been amazing to go to the Magnolia Silos! Unfortunately, we were way too far away!
Shortly after that disappointment :), I decided to try to take a nap. For those of you that know me well, you are probably laughing right now. To the rest of you, I don’t take naps. EVER. At one point, Patrick and my parents were talking about all the longhorns they were seeing so I popped my head up to take a look. I couldn’t see anything. We were driving so fast (the speed limit is 70 in Texas on county roads) that my eyes couldn’t track fast enough to focus. At that moment, everything that was about to transpire hit me like a ton of bricks. I laid back down and let the tears fall from my eyes and prayed fiercely for a miracle. And by pray, I mean I talk to God. Him and I are friends so I speak to Him as such. As with any other time though, I let myself feel my fear and let it go.
The second leg of the trip was LONG. New Mexico is a very barren state. But, it was amazing to step out of the car and feel the heat of the sun. Plus, as we got closer to Arizona the landscape was breathtaking.
Once we arrived in Arizona we got settled in to the timeshare at Scottsdale Links Resort that our amazing friends, Scott and Shannon Farlow, let us use. Patrick, my parents, and I went to an amazing steakhouse called Charleston’s for supper. The food was so good and it was the first thing we had eaten since we left that wasn’t fast food. Late that night, Patrick went to pick up Angie, my best friend, at the Mesa airport. He also drove to Barrow to scope out our route for the next day. I, on the other hand, slept. My stamina was still affected by my second stroke and I was exhausted.
To be continued…...
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