MY STORY (Part 4) DIAGNOSIS

“The good news is that you don’t have MS.” He said.
“Not MS?” I replied.
“No” he said and then he paused.

I think he must have been thinking ‘how do I tell her this, on the phone, and how is she going to react.’ It couldn't have been an easy conversation for him to make…especially on the phone.

There are just some things you don’t do on the phone. Break up with someone, tell your girlfriend/ boyfriend you love them…for the first time, and give someone bad news.

This falls into the bad news department. By the way, I have broken up with someone on the phone so I guess getting this news by phone was my comeuppance. Do unto others…and all of that.

“You have a tumor.” He said

(I’m going to take a small trip down memory lane right now. You can call it a commercial break, because whenever I think of this conversation, my mind replays a scene from Kindergarten Cop, with Arnold Schwarzenegger, where he says to the little kid… “It’s not a tumor.”)

For me, it was a tumor. Now back to our regularly scheduled program.

The Neurologist said. “You have a very large tumor on your spinal cord. The tumor has compressed your spinal cord to a dangerous level. That is what is causing your leg problems. It needs to come out NOW. I have sent your MRI over to a neurosurgeon by the name of Dr. Bryson Smith; he is the best surgeon to perform this surgery. He may call you today, or this weekend, but be prepared to have surgery on Monday.”

I don’t remember what I said in response to his statement, his diagnosis. I also don’t remember calling my family to tell them, but I know I did call them, and I’m sure hearing the news over the phone wasn’t easy to them either.

What I do remember was feeling numb, but at peace. I had a diagnosis and they were gong to “fix it”. Or at least they were going to try. After I hung up the phone I grabbed my daughter really tight and cried. Part of the tears were happy, happy that I finally had a diagnosis…the other half were sad.

That weekend was a family campout. The doctor had told me I needed to wait to hear from the neurosurgeon so I stayed home waiting while my family took my daughter and went camping.

I spent the weekend thinking and praying…lots of praying.

But no one called.

On Monday morning Dr Bryson Smith’s office called and wanted to see me. My mom met me at his office where he examined me, had me do some of the same walking tests the other doctors had done and then showed me and my mom the MRI slides.

If you have never seen MRI pictures on disk before you should. It was amazing how clear they were and how really advanced MRI’s are. I have disks and disks of them now…including the one he showed us that day.

He scrolled down the MRI, starting at the top of the T-spine. As he scrolled he pointed out my lungs, each vertebrae, the spinal sack and the spinal cord. When he got to T-9 something white appeared and he stopped.

“There is the tumor” he said. He then pushed buttons that made the screen colors lighter so we could better see the white tumor.

He looked at us and went to the next vertebrae, and the next, and the next. As he did, each time he used the scroll of the mouse the tumor got bigger…and bigger. He stopped on T-11 and said. “And this” as he pointed to the screen, “is your spinal cord.”

I’m thinking….’where?’
I didn’t see it, honestly I didn’t. He had to back up a few slides and keep his finger on it for me to see it. The reason I didn’t see the spinal cord is because it barely existed. The tumor had smashed my spinal cord from its normally round shape, into a very thin crescent moon.

He told us it was a nerve sheath/ schwannoma spinal cord tumor. Schwannoma tumors develop from wacked out cells surrounding the nerves. He said mine went from T 9 to T 11 and that it was most likely not cancerous (later I would find out that only about 2% or schwannoma tumors are cancerous). He said these types of tumors take a long time to grow and that if he had to guess he would say mine had been growing for 5-7 years.

5-7 YEARS…Holy sh…er…crap!

5 years ago I had been pregnant and had those weird leg pains.
4 years ago I had picked my daughter up, or tried to, and experience that stabbing paralyzing pain.

It hit me like a train………..wham!!!

The tumor had caused those things. All along the tumor had been the reasons for so many weird medical things that had happened over the past 5 years. I had had 2 MRI’s in the past 5 years, not including the full body one, and they hadn’t shown anything because the tumor was 2 vertebrae above the range of those MRI’s

All I could think was…. Holy crap!

He told us that the tumor started on a nerve that runs along one of my ribs and that it grew into my spinal column and down the cord. He looked at the screen again, once again pointing to the crescent shape that was my spinal cord and said he couldn’t believe I was still walking.

I couldn’t believe it either, but the truth is…I really wouldn’t have been walking much longer.

He said that because the tumor had grown slowly it had allowed my body to adjust until it couldn’t adjust any further, but that he couldn’t believe I was still as mobile as I was.

My mind was racing with all of the information he was giving me. But I could pinpoint the time in all of this when my body decided it couldn’t adjust any more and the symptoms of the tumor became noticeable.

I could pinpoint it to the day.

It had been almost a year ago….October 2003 while I was walking around the side of my condo building. I stepped in a shallow hole that most people wouldn’t have even known about and most bodies wouldn’t have even tripped on and my body said ENOUGH…I can’t do this anymore. I just can’t adjust enough to this tumor inside you anymore. I can’t hold you up anymore with fewer nerves working. I just can’t.

And so down I went…literally and figuratively.

The Neurosurgeon said the tumor needed to come out. That surgery was the only way. But that we had caught it just in time. If we hadn’t caught it when we did I would soon become paralyzed and then eventually the blood flow would be compromised……and then….well….I needn’t say more.

However he was worried about how bad off the muscles were in my legs. He didn’t think my body was strong enough for surgery; he wanted me stronger so he prescribed me some steroids and schedule surgery for August 20th…that Friday. Four days away.

I had a training I was in charge of at work all week, and I hated that I had passed the first day off onto my unsuspecting coworkers who had no idea what they were doing. So I actually breathed a sigh of relief and went back to work.

Sometimes, usually when looking back on a situation, I wonder what the crap I was thinking. This is one I wonder about. I laugh about it now, but geez, who in their right mind would go back to work when they had four days to prepare for a life-changing surgery.

Apparently I do.

That week I took the pills, noticing some changes in my leg sensations. But mostly I spent the week on the Internet looking up information on spinal cord tumors and getting my personal papers in order.

This wasn’t just an everyday, ordinary surgery. I had been told the side effects by the surgeon. They included things such as: Paralyzation and death. Plus I had learned on the Internet that spinal cord tumors really aren’t that common. The statistics I read said something like 8,000 cases a year.

I also read many posts that said most Neurosurgeons don’t perform these types of surgeries. Most people go to Johns Hopkins or the Mayo Clinic.

My surgeon hadn’t done one before….I found that out later…thank goodness.

With those side effects I knew I needed to make sure my will was up to date and that all of my other important papers were in place and that my doctors had a copy of my living will.

Sounds morbid doesn’t it, well…it is.

Wednesday night I received a call from my regular doctor. I guess when I went in for the MRI on Friday, they had asked me if I wanted the results sent to anyone else and I had said “yes, send them to Dr. Johnson”. He got them that morning when he came into the office. He was floored by the results.

Weren’t we all?

He had called to apologize for not asking for an MRI of my whole spine. He couldn’t believe he had missed the tumor by two stinkin’ vertebrae. I could hear the guilt in his voice; I could hear that he felt he had failed me. I could almost feel the self-kicking he was giving himself.

I tried to let him know that I didn’t blame him. I said things like “you didn’t know” and “you weren’t the only doctor to miss it” and “I wasn’t having pain in my T-spine, so how could you know?”

He is a doctor, he plays God everyday. I guess he expects perfection from himself. He shouldn’t but he does. To this day I can still see the guilt in his eyes.

He wished me luck on that Wednesday night, told me I was in good hands with Dr. Smith and hung up.

I wanted to ask him if he thought I would survive the surgery. But there were just some things I didn’t dare ask my doctors…that question was at the top of my list.

I really don’t remember much else about that week before my surgery. I was mostly numb, maybe with shock…I don’t know. But that numbness kept the scared feelings away and allowed me to be a peace with my life. So much at peace that on my day of surgery I knew that if I was called home to my Father in Heaven, that if my life on earth was over, I would be okay. As would my daughter.

I had lived a good life. Not mistake free, because geez…I am who I am. But I had lived a good life. I didn’t have any unfinished business. If it was to happen, I was ready.

I didn’t want to die though. I had a 4 year old daughter that I wanted the opportunity to raise. I wanted to live, if only for her.

Always for her!



And so on August 20th 2004 I walked into the hospital at peace, but with a prayer in my heart, a very large prayer.

“Lord, let me live through this, let them remove this tumor from my body and make me whole so that I can be a mom.”

A mom…

I promised the Lord that if he would grant me this wish I would live my life devoted to being the best mom I could be.

A mom…that was all I wanted to be. That is what I wanted most out of life. Have you ever thought about what you would want most if you were to make a compromise with God while staring death in the face?

Neither had I.

My mom, my dad and my grandma were with me at the hospital. They helped get me dressed and ready for surgery, all the while they stayed pretty quiet and talked about mundane things.

I was worried most about my mom. I’ve never asked what went through her mind that day. I know she was scared. I knew because of the questions she had asked the neurosurgeon. I’m sure someday I will ask her what she thought, how she felt on that August day. I can’t imagine being in her shoes and faced with a similar situation.

My mom is my rock. She had been with me for the past year through test after test and little did I know at the time but I would ask so much more of her…so much more.

We were all expecting a 7-hour surgery. We had been told that they would go in through my back. Cut the muscles to get to the spinal column. They would try to remove the tumor, most likely having to remove other nerves and some bone. They would then use a “patch” made from cow cartilage….*moooo*…to seal the spinal sack and then sew me up.

(Sorry, even after 5 years I still can’t help myself. I have to ‘moo’ when I talk about my surgery.)

I’m part cow now. Thank you little cow.

If Dr Smith couldn’t get it all or he decided it was too much of a risk, he would get as much as he could, cauterize the rest and sew me up.

I said goodbye to my parents and grandma and they wheeled me into the operating room. I had already said my goodbyes to my daughter. The night before the two of us had slept curled together all night longh

I know it may sound funny. But as they rolled me into the operating room I laughed.

I was thinking. “Those poor doctors.” hahaha
“Here I am lying on my back. They are going to have to lift me and flip me like a pancake before they can operate on me.”
I’m no lightweight, those poor doctors. hehehe

I just hoped they didn’t drop me.

The anesthesiologist came into the operating room and told me he would be with me throughout the whole surgery. He told me he was going to ask me to count backwards from 100 to 1 as he gave me the anesthetic, but before he did that, did I have any questions?
I lifted my head, looking over my toes and saw all of the nurses and doctors running every which way in the room. They were bringing in carts and trays filled with medical stuff. They were doing their jobs, getting ready to cut me open. (That isn’t a thought you want to dwell on for very long) It was cold in the room, but not uncomfortably so. I looked back up at the anesthesiologist, who was older than me by about 20 years or so and asked two questions.

Part 5 coming soon.