March 3 was a day full of pre-op appointments. We decided the day before that everyone would come to the morning appointments. So we all loaded into the Transit and headed to Barrow. There was so much traffic, but the roads are beautifully maintained and it is incredibly easy to navigate about Phoenix.
My first appointment was in Speztler’s surgical wing. I had to meet with the nursing staff to pick up all my items for my surgery and discuss the order of my surgery day. The neurosurgical unit was not what I expected. It was like an emergency room, with bays separated by partition walls and curtains. My appointment went very smooth and quick. The nursing staff were kind, efficient, and informative. I, surprisingly, was extremely calm.
After that, we went to check in for my MRI. This MRI would be the final view that Dr. Spetzler and his team would have of my brain before surgery. They used this MRI to determine the safest route to reach and remove my CM. We were very early so we walked across the street and ate at this cute little sandwich shop for lunch. We ate outside and enjoyed the gorgeous weather. It was quite the departure from the weather we left at home.
I was escorted back to the preparatory room when it came time for my MRI. Once I was ready, I was taken to the room that held the MRI machine. To my surprise, the room seemed very old and dingy. I did not feel comfortable the second I entered and unfortunately that feeling continued throughout my MRI.
It was the worst MRI of my life. It was SO HOT in the room. The tech asked me if I wanted a blanket and I about laughed at him. I also had to have an iodine IV for contrast (I HATE IV’s!). The MRI tech was a pro at IV’s though, because I barely felt it. Plus, they did not have music (I usually get headphones, this time was just ear plugs). I couldn’t even count songs to keep track of time. So, for 45 MINUTES (the longest MRI I have ever had), I sweat to death, tasted iodine in my mouth, listened to the loud drumming of the scan, and tried my best not to have a panic attack. Did I mention that all I did was think about all the really bad things that could happen to me during and after surgery? What would this MRI reveal? I about started crying when the tech came in to pull me out of the machine. I was so over the day and the worst part was still yet to come.
My next appointment was not until 4pm so we took my parents and Angie back to the condo. We had time to relax for just a little bit before heading back to Barrow and spent some time walking around the grounds of the condo complex.
My next appointment was in Dr. Spetzler’s office with him and his team. This appointment was to discuss their surgical recommendation after seeing my MRI and answer any questions we had. Patrick and I decided to attend this meeting alone. We knew we were probably going to hear many scary things and wanted to protect my parents from hearing them. We also knew that we would more than likely be very emotional and wanted to experience that alone.
We arrived to Spetzler’s office early to fill out paperwork. The waiting room was packed! There were people of all ages and it was easy to see who had brain trauma. I was overwhelmed and felt very unsettled throughout our entire wait. I had obviously had my fair share of hospital visits and therapy sessions so I was used to seeing people at all stages of pain and recovery. This, though, was different. I found myself wondering what each person’s circumstances were? What happened? Are they fresh from their injury? Fresh from surgery? Months past surgery? Who will I be like? Sometimes I wish God would have given us an off switch for our thoughts. I would have used it.
Forty-five minutes later, we were taken back to our room. The nurse took my BP and heart rate and asked all the usual questions. Shortly thereafter, Dr. Spetzler’s resident came in. He explained the surgery and listed many things that we could expect. I would more than likely wake up intubated and unable to communicate with anyone. There was a chance that I could bite through my tongue during surgery. I would be heavily sedated for many days. I would wake up with a severe headache and a lot of nausea and have both for many days. Due to the location of my stroke and the deficits that I have suffered from previously, I would definitely have loss of motor control and eye function/vision. Plus, other factors (trauma of the surgery itself, how precise the removal was, my bodies ability to respond, react, and recover) would all help determne how many deficits I would have, how severe they would be, and how many would be permanent. Here is the fun list of possibilities we were given in addition to those previously mentioned: unable to swallow or breathe on my own, facial paralysis, body paralysis, speech impairment, and intense dizziness.
So, let me paint a picture for you. Patrick and I are in a 6x10 room with this resident. The energy and emotion in the room is making it burst at the seams. I am sitting closest to the resident, with Patrick sitting on my left. I cannot make eye contact with the resident for fear of a complete breakdown. After all, how is it humanly possible to make eye contact with the person who is explaining in detail the demise of your health and life as you know it? Memories from my Iowa City appointment from my initial diagnosis are on instant replay in my mind (you will never be the same after surgery). Patrick is doing what he does….asking questions and preparing. I, on the other hand, am staring at the floor, and biting my lip so hard to stop myself from crying that it could bleed. I could hear Patrick and the resident, but they sounded like the teacher in Charlie Brown, muffled and distant. I literally could not even think about any of it anymore. For two years, and especially in the last two weeks, all we had done is ask these SAME EXACT questions.….what will my deficits be? How severe will they be?
You want to know what the answer has been EVERY SINGLE TIME?
I DON’T KNOW. That is every doctor’s response word for word.
Because they don’t. The brain is an intricate and unpredictable organ. All any doctor could do is tell us what could happen and prepare us for the possibilities. All we could do is pray that none of them actually happened.
I wanted the entire conversation to be over. We were beating a dead horse at this point. I was starting to get antsy and about got up to remove myself from the room when Patrick asked this,
“Will she still be Jamie?”
And with that one question, time stood still. I looked at Patrick in complete bewilderment. Never, NEVER, in all of our conversations had he ever spoke those words aloud to me or to a doctor. I am not sure why I never realized that he would be worried about that when it was always my greatest personal fear.
All in the matter of a second, I looked at my husband in an entirely different light. Physically, he looked beaten, fragile, and like the weight of the world was literally resting on his shoulders. His eyes were filled with tears as he anxiously awaited the resident’s answer. My heart broke for him. I was doing this to him. This wasn’t just happening to me, but to him as well. I was trying to cope with how different I would be and how that would translate to my everyday life. And Patrick, well, I am sure he was trying to figure out how he was going to do life without me. How he was going to be a Dad AND a Mom to our four beautiful daughters. Every ounce of my being wanted to take it all away.
Just as quickly as my broken heart came though, it also swelled with love and adoration. Through it all he had never stopped being my other half. He had never complained, or shut down, or stopped doing everything in his power to make our life beautiful through all the ugly. I think I truly realized in that moment that he never would. I was overcome by intense feeling of God’s grace. Almost like He was saying, “I made him for you.”
My tears slowly fell down my cheeks. Unlike other times in the previous two weeks, I did not weep out of fear. This time I cried out of love and surrender. It was an entirely different form of release and it was refreshing and empowering.
Thankfully, the resident was able to confirm that I would, in fact, still be me. The location of my CM would not cause harm to my frontal lobe, the part of the brain that controls personality.
Instant relief washed over both Patrick and I as the resident excused himself from the room to notify Dr. Spetzler that we were ready. The resident returned with Dr. Spetzler within minutes. He was in full scrubs like he was in between surgeries. Patrick greeted him first and shook his hand. I stood to introduce myself and the very first thing he said to me was, “Wow. You look much better than your scans do.” My response, “I get that alot.” I actually got a bit of a giggle out of him as he sat down.
Dr. Spetzler was a man of few words. He was very reserved and precise. It became very clear that his resident was sent in beforehand to answer all of our questions and do most of the talking. Dr. Spetzler explained his findings of the MRI; my CM was much larger and in a more difficult spot than he had previously thought from my MRI two weeks prior. My first reaction was dread. I was fearful that he was going to tell us that he couldn’t do it, or worse yet, that we shouldn’t do it. Instead, he stated that we needed to remove it. It was an active CM and my strokes were only going to become more frequent and severe in nature. He quickly detailed his route and before we knew it, 30 seconds had passed, and he was gearing up to leave. That’s it. This guy was going to cut my head open in less than 24 hours and 30 seconds was all the more we were apparently going to get to talk to him. Patrick, of course, didn’t let him off the hook. He began to ask the same questions he had asked the resident. I think he needed to hear the answers from the man himself, the surgical God we had heard so much about and had really high hopes for. Dr. Spetzler’s response to every single question, “We will not know until she wakes up.” Total time of meeting: one minute and thirty seconds.
Dr. Spetzler and the resident left and the previous assistant came in. She asked us if we were going to go through with surgery to which we responded yes. With that, she placed papers on the desk next to me to sign and asked us how we were going to pay today. WHAT? Pay for what?
We were dumbfounded. Right there, in that little room before we left, we had to pay for a portion of my brain surgery. We put brain surgery on our credit card. We never thought we would ever do that!
Patrick and I were both spinning as we left the room. Neither of us spoke. We exited through the waiting room, holding hands. I stared at the floor to hide my tears from those waiting. I was embarrassed, but I also didn’t want to scare anyone that was possibly waiting to have the same appointment I just did. I couldn’t look at Patrick either. I couldn’t bear the burden of of blaming myself for his fear as well as trying to carry the weight of my own.
Our drive home was quiet. To be completely honest, I don’t even remember if we spoke at all on the way home. I do remember what I thought about though. I was replaying the entire day in my mind and trying to wrap my head around how I was going to walk into that condo and act calm and collected in front of my family when I was WIGGING OUT inside. I spent the entire ride home trying to calm down and pump myself up…..you’ve done this before, you’ll do it again. Stay positive. Have faith. Focus on improvement. And suddenly, BE AN EXAMPLE, popped into my head and everything fell into place.
The way I responded to all of this was going to affect how Partrick, my parents, and Angie reacted to all of this. My example was going to give them the peace and strength that they needed to make it through this. My example was going to determine how the last few hours that we were all together would be spent. Would we drown in our fear together or celebrate the many blessings we still had? I chose the latter.
I walked up to the condo emotionally shaken, but with newfound courage. I am certain that the trauma of the last hour was still written all over my face as I opened the door--I am not a good actress! To my surprise, I found my brother, Nathan, sitting in the living room with my parents and Angie. His presence both shocked me and stilled me all at once. My brother has always been very strong and it has a contagious effect on me. Having him there was another gift from God; he would serve as a center of strength for me and a pillar of calm and absolute for my parents and Patrick in the days ahead. I was elated to have him there.
We kept our explanation of the appointment short. For the most part I kept my emotions in check as I told them that the appointment was scary, but that Dr. Spetzler was very confident we were doing the right thing by going through with surgery. I also told them that he said that I looked much better than my scans. I think they appreciated that compliment as much as I did. That sentence carried hope and we all needed it more than ever.
It was getting late so we decided to call the girls before we left for supper. I do not often write about how the last three years have changed me as a parent or shaped the childhood of our daughters. I also don’t write much about how Patrick and my relationship has evolved. I would have two more blogs on top of this one if I did. I have been so public with my personal feelings that I have made the conscious decision to keep the intimate pieces of Patrick and the girls close to my heart.
Over the last three and a half years, I have thanked God everyday for His timing. I am grateful that I had so many healthy years- growing up, playing sports, college, falling in love, healthy pregnancies- completely oblivious to the CM that was lurking in my brain. I was able to fully live for 32 years. I believe my life would have been drastically different if I had known about my condition. I praise Him everyday for having all of this happen while the girls are young and completely oblivious. Yes, they know more about strokes, brains, hospitals, and therapy than I wish they did. BUT, if you ask them what they remember about Mommy being sick they talk about fun with friends, sleepovers with their cousins, and visits to the Mommy’s room, eating lots of sherbert, and doing therapy with me. They don’t talk about if they were scared, sad, or worried. They don’t know how those things truly feel. They don’t understand how those emotions can put a hole in your heart. They don’t remember how sick I was and how stressed, scared, and worried we were. I am so, so, so grateful for that,
So, when we Face Timed the girls they were delighted to fill us in on everything they were doing with Uncle Tom. They knew I was having surgery the next day, but they had no idea what it all meant. I remember trying to tell them about it before we left, but their little minds were preoccupied with everything else. I kept the Face Time conversation casual like it was just a regular ole day. When I hung up I lost it though. Myah didn’t want to hang up and it was like a knife went through my chest. I had an intense moment of doubt about going through with the surgery. Is this really the right thing to do? Would it be better to just ride out the strokes and enjoy the time in between?
We also called all of our family members back home. With each phone call, I recounted a little bit about the appointment and filled them in on the plans for the upcoming day. They all told me good luck, that they were praying for me, and that they loved me.
Conversations under circumstances like these are hard and awkward. I have had many of them--after my strokes, before eye surgery, before we left for Arizona and now these. Do you lay everything all out there like you’re never going to see them again? Do you stay more reserved and hope that they can sense through your tone all the things you want to say but can’t? There is always so much to say and no idea how to say it. And the energy you can feel from that when you talk to someone or hug someone is palpable. There is no other feeling like it.
I was drained after all of the phone calls. I was starving and ready for a change of pace. We eventually loaded up to eat supper. We went to an awesome Irish pub and it was the perfect cuisine to eat for my final meal. While we were there, I was able to talk to my sister, Chelsea. She was emotional and upset that she couldn’t be with us. She was nearly 7 months pregnant at the time. All I could do was reassure her that I was going to be okay and back in time to see her deliver her beautiful baby girl.
After supper we went to the neighboring grocery store and picked up some ice cream for dessert. It was getting late at this point so we headed back to the condo. I sat with my family for a bit in the living room before retiring in to our bedroom to watch American Idol and write my final blog post. Angie came in with me and helped me type it up. It was very hard for me to see my computer screen, especially the cursor, at this point. If I am being honest, I struggled to write it. I was exhausted and I had so many thoughts in my mind that I couldn’t focus on just one thing to write about. I felt like I was putting pressure on myself to write this amazing post for my girls since I didn’t know if I’d be able to write again. I didn’t have it in me though. So, instead, I sat with Angie in the bed, wrote a quick post, and enjoyed my time laughing, crying, and reminiscing with her.
I fell asleep quickly. I was mentally and physically drained from the day's events. After all, I was only two weeks out from my stroke so I was still recovering. My stamina, both physically and mentally, was not great and that was the most activity I had done yet. By the time I laid down, I shut off. I had agonized over everything so much during the daytime hours, that I didn’t have anything left to think about. My left side, by this point, was also more stiff and tingly than usual. That reaction is a new tell tale sign that I am tired, over exerted, or getting sick.
Tomorrow life would change forever. Strangely, I was feeling more at peace about that than I could have ever imagined I would.
To be continued…...
