As I started this project, I knew there would be entries that would be particularly hard to write. May 7th (day before surgery) and 8th (day of surgery) will be hard, the 27th (day I was transferred to rehab) and 28th (my son’s birthday) will be hard. May 3rd is one of the worst. It was the worst day of my life, slipping past the dark days of August 2001, when I found out my dad was dying and when he actually passed away.
May 3, 2012 started so innocuously. Not comfortably, because there was no “comfortably” anymore just a constant dizzy pounding in my head, but innocuously. It was Thursday morning and I was off to teach my last class of the semester. I waved goodbye to my first-grader from the car as Matt drove him to school (we always followed each other out of the subdivision). The college is near the airport and, by now, I was used to the fact that as I walked from the parking lot to the classroom, the sound of jet engines in my head would follow me, never fully fading away. I finished and headed home.
Like tag team wrestlers, my husband tagged me in and he left for work. He had been out the door for about 3 minutes when the phone rang. It was the PA from the doctor’s office. “I just got a call from the technician reading your MRI . . .they found something” Things started to blur, my heart started to pound in rhythm with my head. “There’s something on your pineal gland.” I didn’t have to ask what “something” was. There was only one thing it could be. She went on, “it’s causing hydrocephalus, a buildup of fluid on your brain.” So that’s why it feels like I have water in my ears. She told me that I needed to go the ER. She told me to choose either OSU or Riverside Methodist Hospital. She told me to stop by Bob’s MRI Barn and pick up my imaging disc on the way. She wished me luck.
I hung up in a daze. But I have to get my son to preschool. Obviously, that wasn’t happening. I called Matt, who was miraculously still in the car (had it only been minutes since he left?). “You have to turn around. I have a brain tumor.” My kids were watching TV. My kids. What do I do with my kids? I called my friend Cheryl. Please be home. Please be home. She was. I don’t know what I said. I stopped briefly at the computer to email the preschool and post in my mommy group (of which Cheryl is a part) that I was heading for the hospital and to pray for me. Within 10 minutes, Matt was back and we were headed for Cheryl’s with my younger two boys. As I walked up to her door, I was in shock. I have no idea what I said. I hugged my 5-year-old and my 2-year-old. What if I never see them again? Cheryl has fought her own battles, which are not mine to share, and I will never ever be able to thank her enough for helping me to fight mine that day and the days that followed.
As we drove to Bob’s MRI Barn to pick up my MRI disc, I realized I had to call my mother. Hi Mom, it’s your only child. Remember, you didn’t have a second child because you didn’t think you could love another as much as the first? Well, the only child has a brain tumor. She might die. I’m sorry. As I started to dial, I realized that they were supposed to be on the road, driving from Boulder, CO to Albuquerque, NM to visit my grandfather. Shit. “Where are you?” I remember asking. “Pueblo.” That’s about 2-3 hours away from their house. “I think you need to turn around,” I said. I don’t remember the rest.
I had been given the choice of OSU or Riverside hospitals. My only experience with OSU was visiting my friend Ali’s baby in the NICU and I remember it being hard to park there and hard to navigate. I had been to Riverside to visit friends having babies. It seemed easier. So, we went to Riverside. I had no idea Riverside was renown for neurosurgery and was in the middle of building a new Neuro wing. I had no idea it was the hospital for stroke victims. I had no idea that, when we walked in those doors, it would be almost 2 months before I walked out of them again.
They took my insurance card, a co-pay and the MRI disc and put me in a triage room. My teeth were chattering. I was freaking out about our eldest son. There’s no chance we’re going to be done with this by 2:45pm, is there? Who would pick him up from school? No one other than the two of us had EVER picked him up from school. I scrolled through my cell phone and realized I didn’t have the numbers of anyone I needed. I asked Matt if he thought the school would give us Cindy’s cell phone number if we called. They did. He called. She answered. Thank God. I don’t know what Matt said even though I was sitting right there or maybe I asked him to step away, so I didn’t have to hear. I can only imagine what she thought. You see, this had happened before in our church/school community. A few years ago, there was another mom with three kids roughly the same ages that mine were in 2012. I never knew her, but Cindy was her friend. That mom also had a brain tumor. She died. Please, no. What will happen to my kids?
As we waited, I remembered that over the past few months, there had been several occasions when my husband had been less than sympathetic toward my constant complaints about headaches. “Go to a doctor,” he had said. Snarkily, I had once replied “if it turns out to be a brain tumor, you’ll feel really bad.” Regret. I take it back. I’m so sorry, sweetheart.
They day dragged on. I was shaking. My head was pounding. I couldn’t think. I asked if there was “something” they could give me because I was having a panic attack. I had never had an anti-anxiety pill in my life. And so began my 4-week dysfunctional relationship with Ativan.
Some interminable amount of time later, someone from the Neuro team came by. He wasn’t one of the neurosurgeons. In fact, I have no idea what his position actually was, but he seemed to know what he was talking about and he was the first person other than the ER personnel that we had seen all day. He asked about my symptoms, told me again about the hydrocephalus. If he showed me the disc, I don’t remember. In fact, I don’t ever remember seeing a picture of the tumor that almost took my life. He told me they were admitting me and that a neurosurgeon was being called in, but it might be evening before I saw him. Then, almost in passing, he said that pineal gland tumors, although exceedingly rare, were almost always benign. Benign. Thank you, Jesus, I needed that.
The next few hours are a blur, I was moved to a room. Matt went with me. I knew he would have to get the kids soon, but he didn’t want to miss the neurosurgeon consult. Finally, the neurosurgeon came by. The room was loud. I had a roommate who seemed to be in a lot of pain. The neurosurgeon pulled a stool up by the head of the bed. I liked Dr. Z immediately. He put me at ease. He told me that the primary problem was the hydrocephalus. It was killing me. He also confirmed that pineal gland tumors are normally benign. He told me that his plan would be to place a shunt to drain the fluid and then to monitor the tumor every few months to see if it changes.
That seemed reasonable to Matt and I. “But,” he said, “I want you to get a second opinion.” He told me about Dr. G. Dr. G, “the rock star” neurosurgeon who liked to race cars in his spare time. Dr G, who, according to Dr. Z, “is the best of the best. If I’m ever in need of a neurosurgeon, my wife is under strict instructions to call Dr. G. If Dr G. says he wants to operate, then you let him operate.” He shook our hands and left.
Matt had to rush off to pick up the kids. Since they were driving, it would be 2 days before my mom and stepdad could get in. A mommy friend or two came by that night. My roommate kept moaning. I asked for more Ativan and a sleeping pill. About the time it started to kick in, they came to get me for another MRI. Really? They do MRI’s at 3am? Clackety, clackety, clackety, clackety, clack.