In The Beginning
The most common thing I get asked is, “How did you know something was wrong?” or “How did you first find out?” So here it is:
It started in the fall of 2011 with a strange tingling in the fingertips of my left hand, very subtle and intermittent as I would brush my hand against my leg or across the steering wheel. I didn't pay much attention to it but did take note of it. As anyone would, I figured I was developing magic powers!
Out of the blue one day my husband said that my eyes looked different, that one of them was more open than the other, but I just brushed it off because I always knew that my face wasn’t symmetrical.
About six months later I noticed my left hand began feeling weaker than my right and would tire easily. Holding my hairdryer became a chore; my arm would feel heavy and tired. Then, one night while on the couch watching television with my husband, Micah, I casually tested the things I could do with my right hand compared with my left. I tried to do the Star Trek Vulcan hand signal; then I tried to just rub my fingers together quickly but realized I couldn't even hold my fingers straight. I tried things like holding up three fingers or snapping my fingers and found that my left hand was not the same as the right. Everything was a struggle. Oh God, this isn't good. My heart sank.
I had been having a lot of back problems since giving birth to my one-year-old daughter, Haven, carrying her everywhere, along with a full diaper bag and my purse, all with my left arm. I assumed and hoped my hand issue could be related to my back and neck pain, so I consulted a chiropractor. He said I most definitely had the type of problem he could fix, and my weakness was most likely a result of my neck and back problems. After I’d seen him for two weeks, my back felt great, but my hand had not improved at all. In fact, it slowly seemed to be getting worse. I started talking with my friends about it. One friend, Lisbet, whose husband was a neurology resident at UCLA Medical Center, asked if I wanted to talk with him about my situation, and the next thing I knew, Dan was at my house. He did some basic tests to check whatever neurologists check for, and when he did my reflexes, he said I had a bit of “hyperreflexia.” Well, I knew what hyper meant, but I could only guess what reflexia meant. He said it usually means something is going on in the spine or brain. When I spoke with Dan on the phone before the visit, we had been thinking it could be carpal tunnel syndrome or possibly a compressed nerve in my elbow or neck. Now he didn't think so. I was trying to hold it together and be polite, but inside all I could think was fuck …fuck…oh my God. When Dan left after fifteen minutes of listening to Micah make painful small talk, my handsome, but slightly dense, husband said, “Well, don’t you feel better?”
I burst into tears. “Didn't you hear what he just said? He thinks there’s something wrong with my spine or brain!”
“I never heard him say that,” he said.
Jesus Christ.
In this day and age, the first thing many people do when they suspect a medical problem is Google it. This is unequivocally a huge mistake, and my Googling the terms “hand weakness” and “hyperreflexia” was no exception. Only a few results came up. Behind curtain number one was multiple sclerosis (MS). Behind curtain number two was Lou Gehrig’s disease (ALS), and behind curtain number three was a brain tumor. The one I was most worried about was ALS because it’s usually fatal within two to five years from the onset of symptoms. I was terrified and certain that’s what I had. The symptoms of a brain tumor are dizziness, nausea, seizures, and headaches, all of which I didn't have, so it was down to ALS or MS…and there I was, rooting for MS. Go MS! Woohoo! What a sad state of affairs when you hope you have MS.
My next step was to see another neurologist. I went to someone local my internist recommended, a very upbeat and positive man. My best friend since 10th grade, Krista, came with me for moral support. The neurologist immediately told me I didn't have ALS. I asked him how he knew that, and he said, “Well, we could spend all day talking about what you don't have, or we can figure out what it is.” Well, alrighty then. But because he never told me why he said that, I never fully believed him. He agreed that it could be something in my neck, so he ordered an MRI of my upper spine and brain. I was still breastfeeding my baby girl, who was 15 months at this point, so we decided not to use the contrast dye they would normally use in the MRI because you can't nurse for 24 to 48 hours afterward. The neurologist said that if something looked suspicious then I could always go back and do it with the dye later.
I had my MRI on May 18th, 2012. That day was nerve-racking to say the least. Leading up to it I was hyper-aware of any change in my hand, and I couldn’t keep myself off the Internet. I prayed it was a pinched nerve in my neck. Please, God, I have a one-year-old and a six-year-old to raise.
An MRI is a unique experience. I have had CAT scans before but never an MRI. The big Russian tech asked me if I was claustrophobic, and I said, “Only in small spaces,” just to lighten the mood.
I was to have two MRIs, each 30-45 minutes long. Strapped down on a gurney with my head locked in place, I was pushed into the MRI tube. I wore earplugs and headphones to protect my ears from the deafening sound the huge, doughnut-shaped magnetic machine makes. If you’ve never had an MRI, it sounds like you are in a Star Wars movie battle: PING PING PING, BONG BONG BONG, BOOM BOOM BOOM and high-pitched screeching at a decibel that could make you deaf. On top of that it shakes like there is an earthquake.
I got through the first half, which was the spine. Next was the brain scan. Halfway through, the tech came in and pulled me out of the machine. He took off my headphones, but my head was still immobile. He said to me, “We need to use the contrast dye.” I told him no, and that my doctor said I did not have to use the dye because I am nursing. My nerves were on end, and I was beginning to get really frustrated with this doofus. He left the room for a moment, and upon his return he abruptly said, “The radiologist says we NEED to use the contrast dye.” This is where the panic set in. Instantly, I began to cry. I knew something was very wrong. I was freaking out because my first thought was that I would not be able to nurse my baby for two days. How could I do that to her? And then I really freaked the fuck out because I was sure I was dying. Something was wrong with my BRAIN.
This realization sent me into full panic attack mode. I couldn't move the tiniest muscle or they would have to start over. I desperately tried to pull myself together while trying to read the faces of the techs. What is it? MS? Tumor? ALS? I was hysterical. They started an IV of contrast dye while the tech made small talk about his kids. Somehow I managed to make it through the rest of the test.
The original plan was to give me the MRI film, and being a Friday afternoon, I would just bring it to my doctor’s appointment Monday morning. While I sat in the waiting room waiting for the film, they called me in and then handed me the telephone.
“Your doctor’s on the phone,” the man said.
Oh, my God.
“You have a mass in your brain,” my doctor informed me.
“What?” was all I could say.
“It’s a four-centimeter mass.”
“How big is that?”
“About two inches.”
Holy shit, that’s a golf ball!
Stunned, I didn't know what else to say or ask. Think fast. My doctor told me he was out of town and to bring the film to his office on Monday. The only thing I could think to ask was “Is it in an operable location?” A genius question under the circumstances I think. “Yes” was his answer.
Immediately after walking out of the office, I called Micah, who I knew was about to leave to pick up our six-year-old son, Lucky, from school and was waiting for me to come home to stay with Haven while she napped.
“It’s really bad,” I told him. “I have a mass in my brain.”
I told him I was hurrying to come home but didn't think I'd be there in time. That’s how Micah found out. He was basically stunned silent. We had no time to talk or process the information.
As I left the building holding the gigantic film, I couldn't believe I had to deal with waiting in line to prepay my parking. I just wanted to scream to the world, “Don't you know I have a brain tumor?! Get outta my way!” But I had to act like a normal person, someone who didn’t just receive this horrible news.
I got home in time to give Micah a brief hug in the driveway as he hurried to go get Lucky. I finally got a chance to look at the film, and I was shocked.
This was my first look at the tumor
The tumor was huge.
Micah and I didn't get a chance to talk about it until the kids were asleep. While he was picking up Lucky, I called my parents. They were appropriately shocked
and horrified. Since I had very little information myself, there wasn't much to tell them. Why do things like this always happen on a Friday afternoon?
I immediately started Googling brain tumors to find out about all the different kinds. By the end of the evening, I knew what the best kinds were and what were the worst kinds. I hoped and prayed that I had the best kind, a meningioma, but was terrified that it could be a glioblastoma multiforme or GBM, the worst of the worst, terminal in a short period of time, worse than ALS. I didn’t think that was possible.
That next Monday, while Micah was at work, I met with the doctor and discussed the situation. By the look of it he thought it was a low-grade glioma (not cancer). Better than a glioblastoma multiforme (GBM) but not as good as a meningioma. He referred me to a doctor at UCLA because he wasn’t equipped to deal with brain tumors.
Thus began the process of interviewing doctors, getting opinions, and making decisions. I was in a state of panic I had never experienced before.
I was willing to do anything anyone suggested, and I did. It’s amazing how many people prey on our fears. I was so vulnerable and bought it all, hook, line, and sinker. I also started my blog on Cedars Sinai Hospital's website “CarePages” to keep family and friends informed. Up until then I had been emailing or calling everyone. It gets exhausting trying to repeat the information over and over again, so a blog is a cancer fighter's best friend. Cedars was the hospital where one of the doctors I was to interview worked. I was required to give the blog a name, so I just decided to call it Katie’s Brain, straight and to the point. Every time I logged in, it would say, ”Welcome to Katie’s Brain.” I liked that. It had a double meaning, so I kept it.
Here are the exact entries from my blog.
