Preparing for Battle

"write hard and clear about what hurts"

-Ernest Hemingway

 

 

A few months ago, I was out for a run by myself. Despite the oldies rock n' roll beating through my ear buds, I was still able to do a good deal of thinking. I think about a lot of things while I run, most of it passing thoughts. But, on this particular occasion, I had a single thought that stuck with me till today. I reflected on how truly grateful I was for how fantastic my life was going at the time. I felt completely fulfilled in every aspect of my life. Though it kept me VERY busy, I loved my church calling as stake girls camp director. I had amazing friends that I knew I could count on for anything. I had children who were happy and healthy and brought me so much joy. I had a home that I loved and a ward that was friendly and inclusive. My marital relationship was stronger than it had ever been, and we were learning very important things together that blessed our family. In fact, if it wasn't for the pesky neck pain I had been experiencing for awhile, I would think I had died and gone to heaven.

 

The neck pain.

 

It always sat in the back of my thoughts, trying to peck its way to the forefront. I woke one day in July of 2015 with a bad crick in my neck. I didn't think anything of it, assuming I had slept on it wrong. A few days later, I awoke with the same pain. There were several intermittent days in the following month that I experienced the now familiar pain, but it always faded after I got up from my bed. I decided that I needed a new pillow, a new mattress, or possibly a new sleeping position. I experimented with all of those things, with little luck.

 

A few weeks later, I began to notice that my fingers on both hands were feeling very tingly, and often even numb. After a couple of weeks of this, I mentioned it to Ryan. He insisted that I see a doctor. I went to my primary care physician, who ordered blood tests and a nerve test on my hands and arms. Both came back completely negative. I figured I probably had mild carpal tunnel due to an increase in typing. I never connected the pain in my neck with the numbness in my fingers. 

 

That fall and winter, the pain increased and spread. It seared through my muscles like a hot iron and was in my head, my neck, my back and shoulders, and down my right arm. It was no longer reserved for the night, though that was the most hellish time, and began to affect my functionality on a daily basis. The numbness traveled from my fingers into my hands and arms, and began to make its way down my torso. If I was being honest with myself, I was scared out of my mind. I was losing strength in my extremities. I could no longer pick up my 3 year old. My fine motor dexterity was going downhill fast. I could no longer type with any accuracy. This affected my very favorite thing to do, write and blog. So I stopped. I struggled to button up my own sweater, my handwriting reverted back to when I was 8 years old, and I was constantly dropping things.

 

 

I tried to figure out what was wrong. I really did. I visited multiple chiropractors, primary care doctors, did physical therapy, and got an x-ray. I felt like each new person I saw was just guessing at my problem, or putting a band-aid on it and showing me on my merry way. Eventually, I went on prescription pain relievers, something I had tried to avoid, but which ultimately saved me from going insane.  By May, my pain was controlled with medication, but the weakness and numbness increased all the time. I knew I needed to do something different. So, I changed up my family doctor. I opted to got with a physician assistant in my ward. I needed someone who felt some accountability to me. Someone who would see me as a person, and not just something to be swept under a rug.

He ordered an MRI for me immediately. I could have kissed him. By this point, I had self-diagnosed my problems as a horrible herniated disk. I felt like I needed an MRI to show this so I could get it taken care of. My MRI was scheduled for Memorial Day, May 30th. I skipped into that office full of hope and happiness on a day that usually carries heavy emotional stress. I was on cloud nine, finally feeling like I was going to get somewhere. This was going to be the beginning of the end of my problems. The procedure went off without a hitch, and I moved on to my BBQ for the day. My greatest fear was that nothing would show up on the images, and that I would be labeled as crazy.

The next day was a Tuesday. I was going to girls camp the next day, something that was occupying every brain cell that I had. I got a call from the P.A.'s office late in the afternoon. She told me that they had received the results from my MRI and that they were going to need me to come in for a follow-up appointment the next day. I told her I was going out of town and wouldn't be available. She asked me what time I was heading out of town. Could I come in before? My stomach did a little flippity flop.  I told her that I was going to be tied up from 6:15 a.m. She asked when I would be back. When I told her Saturday, she proceeded to make me an appointment for 7:30 a.m. on Monday morning.  I was glad that they had found something, but I couldn't shake the feeling that her urgency gave me.

For the next four days, I was so busy that I could hardly think. I had to coordinate 250 people, give talks, teach classes, go on hikes, counsel, troubleshoot, play games, dance, learn, and laugh until  I thought I would explode.  It was a whirlwind gift from God that didn't allow me to think of myself for one minute. I felt true happiness and joy.  On Friday night, I had the chance to sit for a minute with my journal and think.  I wrote down the things that came to my mind, and what began to flow sent electricity down my spine. It wasn't in my voice, but another that I had come to rely on with even greater assurance. It told me about how much my Savior loved me. It told me about how strong I was. And then it told me that things were about to get really, really hard and that I needed to remember the feelings of love I had felt on that night. I was told that I needed to trust in the plan that had been laid out for me from the Beginning, and to remember that all things are consecrated for my good. And then I knew. I didn't KNOW, but I KNEW. I stuffed that feeling deep down inside of me and tried to keep it from welling up in my throat over and over again as I finished off my duties for girls camp. 

The rest of that weekend was a blur. A new bishop was put in place in our ward, and Ryan was called to be in the bishopric. I tried to focus on the logistics, excitement, and increased load that placed on our family, but through all of that, I couldn't shake the feelings surrounding the knowledge I now had. I became withdrawn and sick to my stomach. I tried to sleep that night, but only managed a few hours as my mind raced a million miles an hour.  Ryan planned to go in to work late so that I could go to my early doctors appointment. I had no appetite and left the house without eating. I arrived at the office 15 minutes before my appointment, and it was still locked up. I didn't like that at all. I walked to the gas station next door to buy myself a juice.  My hands were shaking and I could feel my face contorting against my will. As I walked back to the medical complex, it came as clear as a bell. "I AM IN CONTROL. TRUST ME". Over and over again.

When I finally sat down with the physician assistant, the words he said brought no surprise.

"We found a mass on your MRI".

My immediate thought was that there was nothing in this world I wanted to do LESS than call my husband and tell him that.  I broke down shaking and sobbing, but there was no fear for myself. Only for my family. A family that understands loss and uncertainty all to well.  I had to gather up every ounce of strength I possessed to call him.  And then we clung together for the rest of the day, shutting out the outside world and relying on each other and our understanding of God's plan to keep us from going to pieces.

We spent a good week and a half in no man's land. We waited impatiently for our appointment with a neurosurgeon to give us the details of what we faced. I didn't like it one bit. I am a fighter, by nature. But you cannot fight an enemy that you do not know. I struggled to eat, sleep, and accomplish anything of any value. It was pure torture, except for the part where we got back to what really matters. We sang to "The Gambler" on high volume in our van, eating chocolate chip cookies and laughing. We went to the park with our kids and let them feed the ducks for hours. I held my baby for an extra long time each night before I put him to bed. Our kisses were more sincere, less hurried. I cuddled in bed with my kids in the morning, stroking their hair and listening to their chatter. It was heaven.

We met with the neurosurgeon on Wednesday. I heard him say, "You have a tumor in your actual spinal cord, and its a big one. What took you so long to get in here? Its nothing short of a miracle that you are not completely incapacitated". We looked at images and talked statistics and procedures and risks. He performed tests on me. I learned a new word. Ependymoma. It is a rare cancerous tumor that shows up in the brain or spinal cord.  Mine looks like a hot dog in a hose and has completely filled up my spinal cord. I learned that usually it is low grade and non-aggressive, and that, barring something unusual, they shouldn't have to follow surgery up with radiation or chemotherapy. I learned that the survival rate is high, but the risk comes from the surgery itself. They will open up the back of my neck, take off my vertebrae, and cut into my spinal cord to remove the tumor. This scares me. A lot. Then they will bolt and screw my spine back together and call it good. I learned that the odds are fairly small of sustained neurological damage due to surgery, but not small enough for me. I learned that I will probably never live a life free of numbness, pain, and weakness again. But I will be alive. I learned that past experiences that have required me to dig deep down inside of myself just to make it through the day have sufficiently prepared me for another test.

Knowledge is power.

I am ready.