Tuesday, December 28, 2010

Christmas 2010

My kitty, Jinx, on Christmas morning on December 20th, 2010.

 My brother wasn't quite ready for his close-up...

 My welcome home sign from the Chases on the real Christmas Eve. I was feeling pretty yucky, but I was happy to be back home.

Here's a photo of my incision on my discharge day, just to give you an idea of the size and location...The doctor had planned to go in a little lower but after making a 3-D model of my brain he saw that this route would be less risky. 

Dr. Puddin' in all his glory.

Monday, December 27, 2010

Thankful and Tired

I'm not sure where to begin! Except to stop and give the praise and the glory to our Lord and Savior Christ! 1 Thessalonians 5:16-18 says "16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus."  
The Lord guided the doctor's and nurses hands and together they were able to remove a very large portion of my tumor and we will find out the pathology report by the end of this week. I was discharged from the hospital around noon on Christmas Eve and have been slowly recovering at my parents' house ever since. The first few days were pretty rough because I couldn't keep any food down and I had some very painful headaches (both due to brain swelling). My blood pressure was very low the last couple of days in the hospital because of dehydration but the doctor wanted to get me home as soon as possible to recover. It was really nice to be home for Christmas, even though this year was very different--it wasn't bad. I was still surrounded by family and I have so much to be thankful for! I still seem to have the same peripheral vision that I did before the surgery (which was what we were hoping to achieve--catch the tumor before my vision got worse. I had two focal seizures (I am remain conscious but I see bright sparkly lights in my left eye and then I'm usually so tired that I fall asleep for one or two hours) while in the hospital and two since I've been home but not in the last couple of days. I have lessened sensitivity in my left foot which we are also keeping close track of. I get tired kind-of easily but the doctor said that should be expected.

While in Pre-op on the day of surgery, I met a young man who be my doctor's first surgery patient of the day. They had found a growth on his skull and it apparently was growing very rapidly. He was very nervous about his procedure and my mom actually talked to he and his mother for a good fifteen minutes (Always making friends! haha) and I guess she was able to comfort him a little bit by letting him know what I was facing. So much so, that before they rolled him into surgery he asked his mom and girlfriend to get "poor Maggie" something from the gift shop while he was in surgery. I was still sitting in pre-op when my mom brought a gift bag and card to me from Brandon. It was the cutest little bear named "Puddin." The anesthesiologist had just given me so anti-anxiety medication for the pre-surgery MRI, and I had just had a portion of my head shaved so...I was a little loopy. The bear was just what I needed. I took the bear with me into the OR and met my long lost sister Debra Ann from Oklahoma (an OR nurse that took a liking to my bear and I). I told her I was born in Memphis and my mom's whole side of the family is from Arkansas so we MUST be long lost sisters or something! She agreed and went to ask me about wedding colors and locations and at some point I fell asleep. 

When I woke up in the ICU hours later, I barely recognized Puddin' in his bear-sized scrubs laying next to me in bed, but I recognized Debra Ann's southern drawl right away when the whole OR team came in to check on me. I later found out Debra Ann had painstakingly cut and resized the scrubs for Mr. Puddin' and I think the look suits him quite well. :)  I also recognized my fiancee's voice right away. My uncles will never let him live it down because apparently I didn't even open my eyes, I just smiled and said "Hey baaaaaby" in his general direction.

As well as my new found sister, I met another interesting person while staying at the hospital. I was able to move out of the ICU after two days and moved into a smaller room on the fourth floor. During the wee hours of the morning, when I was just finally drifting off to sleep, I received a roommate. She was an elderly woman who had had a stroke that day at dialysis and had bronchitis on top of that. I didn't know any of this at the time, though. All I knew was that this poor woman couldn't stop coughing and kept saying she needed to go to the restroom. The nurses didn't think she was strong enough to make it all the way across the room to the toilet so just when I thought I could keep any of my dinner down, they made her use a movable toilet (or "potty chair") located just on the other side of the curtain from my bed. My brother was staying with me that night and was hoping to be able to give the woman some privacy but when he saw me heaving he grabbed the bucket and rubbed my back instead. Sometimes he's such a good big brother! :) He ended up staying in the hospital with me two nights in a row so that my parents could go home and try to get some sleep. He even let me watch an episode of Bones on his iPhone to lull me to sleep.

Ms. Knight, the elderly stroke patient, turned out to be a very good roommate to have because she was on the phone every morning calling housekeeping to get us fresh towels and sheets like it was  four-star hotel! Come to find out she has undergone over twenty surgeries in her lifetime and knew how to work the system! I'm very glad I was able to meet her and I pray that she is continuing to recover, along with Brandon, the  neuro-patient I met in pre-op.

I will post a couple of photos tomorrow of the incision (for those of you that are interested...) and also a couple happier photos of the day I came home. :) But for now, here are the classic hymn lyrics which have been running through my head the past few days: 

  1. To God be the glory, great things He hath done,
    So loved He the world that He gave us His Son,
    Who yielded His life an atonement for sin,
    And opened the life gate that all may go in.
    • Refrain:
      Praise the Lord, praise the Lord, let the earth hear His voice!
      Praise the Lord, praise the Lord, let the people rejoice!
      Oh, come to the Father, through Jesus the Son,
      And give Him the glory, great things He hath done.
  2. Oh, perfect redemption, the purchase of blood,
    To every believer the promise of God;
    The vilest offender who truely believes,
    That moment from Jesus a pardon receives.
  3. Great things He hath taught us, great things He hath done,
    And great our rejoicing through Jesus the Son;
    But purer, and higher, and greater will be
    Our wonder, our transport, when Jesus we see.
    Frances Crosby, Pub. 1875

Tuesday, December 21, 2010


This morning began just like any other Christmas would. My mom walked up and down the hallway past my room shaking her jingle bells like a mad woman. "Santa must have come last night! Come to the living room and see!" she said, full of Christmas cheer and apparently some coffee...I heard my brother groan from his room as I rolled over and did the same in mine. After two or three more tries, she changed her tune. "The coffee's ready and I already started the eggs benedict!" was much more motivating so we slowly got dressed and made our way out to the living room. My parents had a fire in the fireplace, presents under the tree, Christmas music playing on the stereo, and coffee already poured. My brother and I took our usual spots sitting next to the tree and began handing out gifts to each member of the family. My cat laid under the tree watching us and the family dog went crazy running around sticking his nose in everyone's gift bags and ripping tissue paper. As I write this I am wearing one of my favorite gifts, a snuggly pink bath robe!

After the gifts were opened I went to the kitchen to help my mom finish the eggs benedict and set the table. More coffee was poured as we ate and talked about what needed to be done that day. I needed to shower and be ready in an hour to meet my current college Jazz Director at one my favorite places in town, my old junior high school band room. My dad and I quickly escaped the pouring rain as we ran to the car in the driveway and then I stood waiting for my director to arrive. He was driving all the way from school (an hour and forty-five minute drive) in order to get my vocals recorded on a track he had been working on. While I waited for him to arrive I was able to catch up with my childhood mentor, my junior high music director. This man had introduced me to jazz so it seemed only appropriate for me to be recording vocal jazz in his music room some seven and a half years after. Not only did he allow me to use his space, he encouraged me in prayer (along with his entire family who arrive thirty minutes later) for strength and peace for tomorrow's operation. He has been one of the most influential people in my life, so it was incredibly meaningful to hear him speak so confidently about my future. He also reminded me that God is not through with me yet. This experience can only bring me and those around me closer to Christ. 

After I recorded the track and gave all of those involved a plate of my mom's famous persimmon cookies (a family tradition), I got a ride home to help my mom in the kitchen once again. Cooking has always been a time for great bonding for my mom and I. We talk and laugh...we bicker...but somehow the meal always ends up getting done. Tonight's dinner consisted of turkey, gravy, mashed potatoes, green beans, candied yams, rolls, and cranberry sauce. She also baked a pumpkin pie for dessert, yum!! 

My fiancée and I exchanged gifts with each other and with my parents after dinner. I finished my last preparations for surgery and then I exchanged gifts at his house with his family. As I was riding back home in his car I began to realize that today's festivities were now over. My surgery is tomorrow. I also realized I only had like an hour left to shower (no showers on the day of surgery) and to eat (no food after midnight the night before surgery)!!  I took a quick shower while my mom cut me a piece of pumpkin pie. When I got out of the shower she had already gone to bed so I grabbed a few lemon bars from the platter in the kitchen...I can't eat until sometime tomorrow night so I better load up, I thought to myself as a savored every sugary bite.

I have followed all of guidelines and made all the necessary preparations, I will arrive at Mercy General Sacramento at 8am this morning...and the rest is out of my hands. I will fall asleep in the next hour praying for the doctors and nurses who will be caring for me, my family as they sit in the waiting room for hours on end, and for myself that I might be able to use this opportunity to glorify God. 

I may not be able to update my blog for the next few days, but have a very Merry Christmas! 

Monday, December 20, 2010

Egg McMuffins, Catheters, Simplicity, and Manicures

I went in for my third MRI on Tuesday, December 14th at 8am. It took a little longer this time because they also had to do an angiogram while I was in the tube which would allow the surgeon to see where all of the major veins were in my noggin. I think I was in the machine for an entire hour but I don't remember a whole lot. My doctor gave me a prescription to take one valium before the scan. I hope I didn't snore to loud... :)

My dad offered to take me to McDonald's for breakfast after my scan. An egg mcmuffin with orange juice sounded delicious so I let him. I am very rarely awake in time for Mickey D's breakfast hours and if I am it's because I'm busy doing something else. It's become kind-of a treat. I also never actually eat inside McDonald's anymore because I'm usually eating it on the go. I felt like a little girl when my dad parked (about three miles away--always worried someone will ding his car doors) and we walked inside to order. We sat across from each other and chatted while we ate. After breakfast, we went back to the lab to get my blood work done and then we drove back home.

I spent the rest of the week cleaning out my bedroom. Every time I have come home for a weekend from school I always think I will clean out some of my old junk from high school and every time I've been "too busy." This time I didn't really have an excuse. I had an entire week to do nothing but shop for Christmas presents and clean out my room, so that's what I did! I felt this extreme urge to be sure that everything was taken care of before I had the surgery. I've never been pregnant but I think what I felt, and continue to feel, is something similar to the nesting instinct that most women get in the last month or so of pregnancy. I needed to be doing something...accomplishing something. I cleaned off my bookshelf, I organized my dresser and made a "thrift store bag" and a box of stuff that I needed to keep at my parents house for the time being. I vacuumed, dusted and I even emptied the trash.

On the 17th, my parents and I went to my pre-op consultation appointment in Sacramento. I will be having my surgery at Mercy General in Sacramento but his office is down the street at Sutter Medical Group. He said that my tumor looked slightly larger on the scan which is probably why I had experienced a couple more seizures since he had seen me last. In the previous appointment he had sort-of left it up to me to decide if I wanted surgery now or later but he said, "Since it's grown and you have more symptoms, it makes it a little more urgent." He decided to increase my dosage by half and said that I should no longer drive. He used a plastic model to show me how he would enter my brain and other parts of the procedure. We asked him lots of questions and he was happy to answer them. This time he mentioned that I could be in the hospital up to five days (as opposed to the 2-3 he had told us previously) and he also explained that I would indeed have a catheter inserted for surgery. Ugh. I'd seriously rather have a diaper than have some random nurse touch my privates...I supposed that wouldn't be very sanitary, though...I thought. But they would at least wait until after I was sedated. Whew! ...As if it's less creepy to be touched while you're sleeping...

Today is December 19th, 2010 and it's my family's Christmas Eve this year. This morning I went to church with my fiancée and both of our parents. The sanctuary was beautifully decorated for Christmas and the sermon was titled The Christmas Story According to Jesus. I have always enjoyed this pastor's sermons because they are very fast-paced, full of scripture references, and rich with etymology lessons, all of which make it really hard not to pay full attention. Today's message  focused on the following four points:

1) Jesus came into the world for a purpose: He was born to die (Isaiah 53:10-11)
2) Jesus came into the world with the knowledge that He was the perfect One to fulfill that purpose (2 Cor.5:16-21; 1 Tim. 1:15; 1 Cor. 15:3-4)
3) It is clear that Jesus was delighted to do the Father's will (Is.53:11a)
4) When He says, "Here I am," He means, "Here I am!" (Matt. 28:20)

During his sermon this morning, the pastor referenced one of my favorite passages, which is Micah 6:8:
He has shown all you people what is good. 

   And what does the LORD require of you? 
To act justly and to love mercy 

   and to walk humbly with your God.
Sometimes God uses figurative language like metaphors or complex parables to illustrate a principle that we should live by, but sometimes He gets right to the point. It is so refreshing in the midst of all of this uncertainty to not have to wade through complicated scripture...instead I was able to find peace in the simplicity of what He desires of me: justice, mercy and humility. 

After church and a quick lunch of leftover Chinese (yum!), my mom and I met my best friend and her mom at our favorite nail place and got manicures and pedicures. It was just what I needed: relaxation...and sparkly red toes!! We got coffee and talked as our nails continued to dry so that by the time we got home I felt thoroughly pampered. :) 

Tomorrow morning my family and I will wake up and open presents as if it was Christmas morning...I can't help but wonder what I will be doing this year when everyone else is opening their gifts on December 25th...

Sunday, December 19, 2010

Lopsided Smiles and Messes

I was brushing my teeth on the morning on November 17th, 2010, when I realized the left side of my face was completely numb. I smiled at myself in the mirror and noticed that the left side of my mouth didn't move. I probably slept on it funny...I thought.

By noon my face was tingly but still limp. I also noticed that I couldn't make a strong fist with my left hand. I started to get a little worried so I called my mom who suggested I call the doctor. After I described all of my symptoms, he said I was experiencing Todd's paralysis. He explained that the paralysis was temporary and that it was caused by a seizure I must have had while I was sleeping. It should go away within 36 hours. He suggested increasing my medication but I was already taking 2-3 hour long naps in the afternoon on my current dosage. He said that if my paralysis didn't go away or if anything else changed I should call him.

The original date for my surgery was December 15th but after some scheduling issues on the doctor's part it was rescheduled for December 21st. Just four days before Christmas.

"Well, if it's going to be different, let's make it really different," my mom said in reference to this year's Christmas celebration. "How about we open gifts and eat turkey the day before your surgery?" she suggested.

Sunday, December 5th I performed in the annual Christmas choir concert at school, which meant a four hour rehearsal the day before and then two performances the day of. My mom bought twelve tickets, almost an entire row of people were there to see me! Not too shabby, I chuckled to myself. After the first performance and dinner with my adoring fans--ahem--family, I rode back to school to do it all over again. I am always tired after marathon concerts, but I had a hard time focusing before the second performance was even over. I was exhausted when I was finally able to go home and hit the hay that night.

The next weekend, on December 11th, my fiancée and I met our parents at our wedding venue for a tour. As we sat waiting for our parents to arrive, my left peripheral vision began to spin...another one?? I thought. It passed within two or three minutes and I was able to go on the tour but I was very tired and a little disoriented. With the surgery so close, I decided not to call the doctor after this seizure. I would tell him at the next appointment. Oh, and by the way, both sets of parents loved the venue and the date was tentatively set for the big day. :)

All of my teachers were very supportive and allowed me to complete my finals by Monday, December 13th. I had another MRI scheduled on December 14th along with a magnetic resonance angiography (MRA) and some lab work so I needed to leave school by that Monday afternoon. Packing for five weeks at home was very difficult...especially since I also had to pack my cat, Jinx.

In my experience cats don't travel well and Jinx was no exception. My brother and I loaded up the car to begin the journey home and about thirty minutes into the trip we got a strong whiff of cat urine. As we pulled into a gas station to clean him up, I wondered if he had wet himself because he really needed to go or out of pure fear. A friend of mine and I have often talked about the great power that the act of wetting yourself really carries. Everyone has that memory of peeing their pants and the feeling intense embarrassment that followed. Or that sense of urgency that is felt when your little sibling said, "Dad, I'm gonna pee my pants if we don't find a rest stop soon!" from the backseat on a road trip. But what about Jinx? Was he just mad that he was being ripped from his comfortable life and thrown into a cramped plastic carrier to go who knows where? But what about me? What about my life? I 'm not too happy about this whole situation either...so maybe I should just wet my damn pants!  My future was just as uncertain but I was the one cleaning up the mess...

Lord, I am so glad that You are the One in control. Give me the strength to keep cleaning up these little messes and the courage to let You handle the big ones. 

Thursday, December 16, 2010

Concerts, Big Decisions, and Smoochin'

My first week back at school after the diagnosis was...interesting.

Word had spread fairly quickly in the music department (my second home) that something was wrong but a lot of people did not know the specifics. As I rode my bike to school that first day back, I began to get nervous that everyone was going to ask a lot of questions, but I hadn't anticipated that no one would say anything at all. I sat through all of my classes in a daze. My entire world had been flipped upside down..and no one seemed to notice. It wasn't as if I was looking for sympathy or attention, I guess I was just surprised that the change that seemed so real and so tangible to me, was still hidden deep within my skull. My diagnosis was not written across my forehead in all caps.

The weeks after that first appointment are a blur. I was glad to be back at school because the following Thursday and Friday I performed in a choir concert and a jazz combo concert. Some people might see them as a source of stress but those concerts were an amazing outlet for me. I was barely able to sing "Cast Thy Burden" from Mendelssohn's Elijah, but the lyrics, which are based on Psalms 55:22 and 16:8, brought me great peace.
Cast thy burden upon the Lord,

And He shall sustain thee.

He never will suffer the righteous to fall;
He is at thy right hand.
Thy mercy, Lord, is great 
and far above the heav'ns;
Let none be made ashamed
that wait upon Thee. 

Even though my world had changed, life and school still seemed to be going on around me. I wrote two short essays and one 9 page research paper, took four quizzes, gave a presentation, and received my approval for graduation in Spring all within the five weeks after my diagnosis. I'm honestly not sure how I got it all done but I'm glad I was able to do something productive while I waited for my next MRI. 

The evening of November 10th, my fiancee and I drove back up to my parents' house. The following morning I threw some sweatpants on and was about to leave the house when the phone rang. The technician that was scheduled to do my scan was having car trouble and was going to be late. Normally I would have been happy that I had time for a cup of coffee but I had an appointment to review the scan with my neurosurgeon in Marysville at noon the same day, so we had a pretty small window of time to get everything done. My mom dropped me off at the imaging center and as soon as they took me back she drove home to get me a change of clothes and some breakfast. After forty-five minutes in "the tube" and a quick wardrobe change in the hospital bathroom, we were back on schedule! My parents, fiancée and I talked about questions we wanted to ask the doctor while I ate my Egg McMuffin in the backseat. None of us really knew what to expect but we all hoped that the doctor would have something encouraging to tell us...maybe even that it had disappeared.

Good 'ol Goomer was still there and he seemed to be about the same size. Seeing no growth, the doctor was comfortable confirming that it was some type of glioma. The doctor suggested that this type of tumor may remain the same size for years and we may just want to "wait it out." The choices were to watch it, biopsy it, and at some point remove it. "Even if we have an operation, it probably isn't going to cure this," he said. "The majority of tumors that look like this...spread themselves out..." meaning that he would get as much of the tumor as possible in surgery, get a pathology report on it, and then either follow it (meaning eventually have another operation) or possibly recommend radiation. He made it clear that surgery came with many risks, and that sometimes intervention is not the best course of action. I told him that if we were eventually going to have to take it out, then I would rather get it out now. I didn't want to wait around for it to get any bigger. We scheduled another MRI for December 14th and tentatively scheduled a procedure for December 15th. My fiancee asked if there were any kind of symptoms he should be watching for in the meantime and the doctor said that if the tumor were to grow I would probably have seizures despite taking the medication. We also asked if it would be alright for me to drive to and from school and he said that since I had not experienced any seizures while I was on the medication that it would be okay for me to drive short distances as long as I felt comfortable doing so. 

As soon as we got back in the car, my dad brought up waiting for surgery until after the wedding and he didn't let it go until that evening when I went back to school. He wanted to see me finish school and get married before I had surgery. But I had already decided that I wanted to get this process started now. It's never going to be convenient to have brain surgery. Ever. But in this case, it seemed like God was opening every door for me to put this whole situation behind me by allowing me to wait until the end of my fall semester. Having the surgery over winter break would give me five weeks to recover and be ready for my last semester of school. I knew my dad was trying to be sure that I wasn't make a rash decision but I'm not one to sit around and wait for something. If I waited for my tumor to get bigger, my symptoms could get worse and my last semester could be hard even if I didn't have the surgery. I would rather be proactive about the situation and try to catch the tumor before it got worse. Another factor I had to consider was health insurance. It might be smarter to have the surgery while I was still on my parents' insurance rather than waiting until we got married. Neither of us may have full-time jobs right after graduation that provide benefits. 

A week after my second appointment we had engagement photos taken. We were originally planning to take them over winter break but I am so glad we moved the shoot up. The fall colors were a beautiful backdrop... 

Also, it provided a great excuse to spend almost an entire day smooching the love of my life...It's cheesy...but it's true! 

Photos are courtesy of gracemorgan photography. Check out her photo blog! www.photosofowls.blogspot.com

Wednesday, December 8, 2010

Kind-of Attached

I got the diagnosis on a Thursday, saw the neurosurgeon on Friday and the moving truck was parked at the curb on Saturday. My older brother had been planning to move back home that weekend and it turned out to be great timing. The family needed to be together. My fiancee drove back up that day to see me and got caught in the middle of the move. After helping empty the truck into a storage locker a few blocks away, we sat down with my brother, his girlfriend, his best friend and my parents to eat my mom's homemade beef enchiladas. I generally regard moving as a hot, sweaty and tedious task but that day it was exactly what I needed. As I sat there scarfing down my dinner, I felt like I had at least been productive.

After seeing my MRI, my brother's first question was, "Have you named it yet?"
"No...I guess I haven't," I said and laughed.  But why not? I thought.

Later that night, I walked into the kitchen where my mom was cleaning the counter.
"I decided to name it."
"Name what?" she said without looking at me.
"The tumor," I said matter-of-factly.
She quickly stopped what she was doing and said, "Don't name it! You'll get attached!" as if we were talking about a stray dog that wandered into the yard.
"Uh, Mom...it's already kind-of attached..." I slowly responded while raising an eyebrow.

I chose the name Goomer. It's a combination of the name Gomer, as in Gomer Pyle from the Andy Griffith show, and my favorite term of endearment from my childhood "goober." Also, it conveniently rhymes with "tumor" so it has a nice ring to it. "Goomer the Tumor."

In the midst of the emotional roller coaster I was riding, I felt like I needed to be in control of one thing in my life. My wedding. Or at least what I would wear on the day. The night of my diagnosis, I sat at my parents' computer and made a bid on a wedding dress I had been watching on eBay for a week. It was the most satisfying purchase I have ever made. It gave me a small sense of control but even more than that it meant that I had something to look forward to...I made a conscious decision to continue to live my life and be excited for the future.

Phone Calls, Comfort Food, and the Big Picture

I wasn't comfortable with the news myself yet, but I had to bite the bullet and make some awkward and emotional phone calls. I started with my boss. "I'm sorry...but I think I have to take some time off," I remember saying. I called my roommate at school and asked if she would mind keeping an eye on my cat for the next couple of days. Finally, I needed to let my teachers know that I would not be in class on Friday. Thinking about school completely overwhelmed me. My primary doctor had made it sound like I would probably be in surgery by Monday morning...what about the rest of my semester? I had to tell them something...But what should I tell them? I barely know these people, I thought. Should I be telling them all of this? After writing and rewriting, this is the email I came up with:

Hi there-
So, I got some pretty upsetting news today :(
I got a CT Scan and an MRI this morning at the hospital in Woodland in the hopes of figuring out what has been causing my dizzy spells. I met with the doctor this afternoon and it turns out they are actually peti mal seizures caused by a tumor near my optic nerve in my brain. I am scheduled to see the neurosurgeon tomorrow at 1:30pm in Marysville. I will know more after tomorrow but my primary care doctor warned me that surgery and recovery will be a long process and that I may have to take a leave of abscence from school. I'm still digesting the news but I hope to still be in class on Tuesday depending on what the doctor says tomorrow. 

It had been an exhausting day. Before we got the news about my brain my mom had received a phone call from Arkansas informing her that one of her closest uncles had been killed in a car accident. She had spent hours on the phone already, and now she had to call all of these people back with another update. Needless to say, none of us were in the mood to cook we went out instead! My parents asked me where I wanted to go, as if it were a special occasion, and I quickly chose my favorite barbecue restaurant. I had been on a strict "no flour, no sugar" diet for the past month and I decided to give myself the day off. My day off included gigantic onion rings, a juicy tri-tip sandwich with extra bbq sauce and an ice-cold soda to wash it all down. I have always been an emotional eater and that day was no exception.When we finished, the three of us sat around the red and white checked tablecloth, momentarily satisfied with the simple pleasure of a full stomach.

As we sat there talking about how to get to the neurosurgeon's office the next day, the waitress, a neighbor of our's who I've known since junior high, came by our table. I glanced at my mom to see what she would do. I hadn't thought about seeing anyone I knew that day and it suddenly occurred to me that my mom might tell her what was going on. My mom has always been an upfront kind-of person, and I have always admired that quality about her. And true to form, as the waitress began to take our plates my mom set in to give her my diagnosis. Usually I would be irritated that my mom hadn't bothered to ask my permission but in this case I was just tired. She means well, I told myself and smiled up at the waitress.

Amazingly enough, my mother and I both slept well that night. But I when I woke the next morning I felt just as anxious as I had the day before. As we left the house for the appointment in Marysville, I decided to throw my digital voice recorder in my purse and I'm glad I did. My mom brought a small notebook to take notes and all she wrote down was "astrocytoma" the entire appointment.

(I apologize for the paraphrasing in the next portion of the post but my knowledge of medical terminology is still very limited...I'm learning!) 

The doctor shook our hands and invited us into an exam room while he sat at a computer looking at my MRI. He scrolled through my brain scan as if it were the tenth one he had seen that day. He stopped on an image with contrast and circled a large white mass with his finger, and said that it was possible that the area could be swelling from a smaller tumor. But after looking at the rest of my scan, and based on his years of experience, he thought that the entire white mass was a tumor. He pointed to a smaller, slightly darker, area within the tumor, and said he would like to watch this area. "Areas that take on more contrast are generally faster growing," he said. He wanted to hear all about my seizures, and he laughed when I handed him my detailed notes. We discussed my previous medical history, specifically my migraine headaches. During the onset of my very first migraine I lost all vision in my left eye for thirty minutes before I experienced any pain. My dad took me to the emergency room and I was given a CAT scan. That scan was taken five years ago and there was nothing abnormal about it.

After he had finished writing his notes in my file, he began a brief examination. He checked the sensitivity in my cheeks, right versus left, by poking both sides with the end of a safety pin. The prick was considerably more painful in my right cheek. He also gave me a quick vision test. He had me stare at his nose while I followed the red cap of a ball point pen. When the pen was at the top left of my field of peripheral vision it was bright red but as he lowered it to the bottom left, it became almost gray in color. I was surprised. How did I not notice that before? This lack of color saturation is due to my new little friend who had taken up residence in my brain.

He had looked at the scan, talked to me about my seizures, and now he had poked me in the face. It was time for the moment of truth: what did it all mean?? He calmly explained that the tumor needed to come out and it was in fact operable because of it's location. He felt comfortable saying it was some kind of astrocytoma and did not think it was cancerous, but he would not truly know what it was until he "got in there." I don't want to think about how he's going to get in there right now, I thought. He did offer me the option of a biopsy, but he assured me that regardless of what kind of tumor it was, it would need to come out.

I'm not sure who did, but one of us asked, "So where do we go from here?"

He wanted to wait a month, get another MRI and decide what to do from there. If the tumor had grown at all after a month, meaning it was growing quickly, I would have to go in for surgery right away. If it was the same size, I would be able to wait until my Christmas break from school to have it removed. No matter when I had the surgery there were major risks. I could possibly lose all peripheral vision in my left eye, making it very difficult to read music and all of the normal risks that come with any surgery. He restricted me from driving and kept me on the anti-seizure medication my primary care doctor had prescribed the previous day.

I shook his hand again as we left, and got into the my parents car with a sigh a relief. Nothing had been solved or even really decided...but the future wasn't completely uncertain. I grasped onto what little we did know about my situation and tried to give all of my worries to the Lord. This is all part of your plan, Lord, I believe that. Not really sure how it all fits into the big picture...but I'm always more concerned with the details, aren't I?? 

Tuesday, December 7, 2010

A Charming Girl

After my brother, Greg, asked if he could use my MRI in one of his illustrations and I declined, he suggested I at least keep a journal about my experience. I reminded him that I was already keeping little notes of my symptoms but he thought that if the journal turned out to be interesting, people other than my doctor might want to read it. While I am very doubtful that anyone will find it interesting, I do find some comfort in writing. So here I am...writing a blog. 

During the month of September, I experienced three very disorienting "dizzy spells." Each episode was preceded by a brief but very intense bout of deja vu, which almost seemed like a hallucination. The only way I know how to describe the actual episodes is to say that it felt like my left eye was spinning. My right eye seemed to be functioning fine but my left eye was spinning very quickly, as if I were drunk. The first episode happened while I was at school. I was in one of the offices by myself and I somehow made it to my music locker. I had no idea what my next class was, which classroom it was in, or how to get there. I stood in the hallway of a building where I have spent the last five years of my life, with my hand on my locker to steady myself, trying desperately to concentrate long enough to at least remember where I was. Two weeks later, I had two more dizzy spells in one day.These episodes lasted about two minutes each and after the third, I decided that I didn't just need more vitamins or rest.

After a trip to the health clinic on campus, I was referred to neurologist, which meant that I had to see my primary care doctor first. My doctor ordered a CAT scan for Thursday, September 30th and scheduled an appointment to review the results later than morning. I had my scan and had been home for about 30 minutes when I got a call from my doctor. She asked if I could come back and get an MRI in about an hour. "We're not happy with the pictures," she said. I could have told you it wasn't pretty up there, I thought.

Getting an MRI is an interesting experience in and of itself. I raised my eyebrow as the technician handed me earplugs, but was grateful for what little barrier they provided to my eardrums as I endured the forty minutes of noise. I think the worst part was that the noises followed no pattern. As a music major, I find comfort in rhythms, however simple or complex, but I spent the entire forty minutes waiting for the machine to find any kind of steady pulse or pattern. And the noises that my poor ears were subjected to, were not quiet. Oh no. The technician later sympathized, "It's like you're inside a metal trash can and someone is banging on the outside with a heavy broomstick" and I think she's pretty close. Oh, and to add insult to injury, in the middle of the test, you have to get a shot while trapped on the table.

My mom and I went to the appointment to review the results with the doctor that afternoon at 3pm. Looking back, it is amazing we were able to get all of it done in one day...Anyway, the doctor invited us into an examination room and wanted to hear all about my dizzy spells. I showed her my notes so that I would not forget anything and after she read them over she paused and asked, "Is there any chance you could be pregnant?" I almost made a comment about the possibility of immaculate conception, but instead answered simply: "no."
"Okay, well I've looked at your scan and it shows there is a mass in your brain...Let me show you."
This is the point at which my mom quickly gasped and grabbed my arm.
This is also the point where the computer in this particular exam room was apparently in just as much shock as my mom. The doctor entered and reentered her password to no avail. She eventually said, "This is ridiculous. Let's go to my office."

It was pretty unbelievable once I had the scan in front of me. She explained that it sat on top of my optic nerve and that is why I was having altered vision episodes. My dizzy spells were in fact, peti mal seizures. The tumor is about an inch to an inch and half in size and it must come out. She had already talked to a neurosurgeon who came highly recommended with 40 years of experience in the field. All I could do was nod my head and try to soak in all the information. The only time I got emotional was when she said, "You're going to have to take some time off of school." I'm so close to being done...Why now?...Suddenly my mom asked the doctor to wait while she called my dad. My parents' house is just a few minutes from the hospital, so she handed my mom her office phone. My mom tried to dial the number three times but was unsuccessful. Finally, the doctor took the phone and dialed for her.

My dad arrived and he asked a few questions while he looked at the pictures on the computer screen. The doctor made it sound like she had taken care of everything already so I just kept nodding. Dad wanted to know what she would do if it were her daughter. She responded confidently that she would take her to the same neurosurgeon and if she wasn't happy with what he wanted to do then she would get a second opinion. As my parents spoke outside, she made an appointment with the neurosurgeon herself for the following day. I sat there listening to her phone conversation about me, and all I remember her saying is "She's a charming girl." As if that would be a reason to see me on such short notice...I wondered how charming I really was at that moment...I didn't feel charming. I was in shock. I understood everything she had said but...I didn't want to.

Later, as my mom was waiting in line for my anti-seizure prescription, I wandered around the drug store aisles waiting for my fiancee to answer his cell phone. He had almost finished the drive back down to school when I gave him the news. I could barely bring myself to say the words out loud; he asked me to repeat it twice before he had fully heard what I said. I began to cry in the middle of the candy aisle as I told him as many details as I could remember. I told him not to worry about coming back up because he had a class that evening. Come to find out, he went to class long enough to turn in his assignment and then walked back to his apartment, where he sat in a daze.