TAKE THAT TUMOR STORY
I don’t have any tattoos - I have scars. These scars are my tattoos but they just tell a better story. This is mine, for the first time in writing, and though I know it well the journey seems almost foreign – like trying to explain the roads that got you somewhere different and you don’t know how it happened. All you know is that where you were planning on being suddenly changed.
Back in the late summer of 2007 I had just completed my first full year of teaching after a six-year hiatus of staying home to be with our children. I was exhausted. I don’t mean tired out and needing a nap, I mean couldn’t-move-after-work-ten-hours-of-rest-wouldn’t-fix-it exhausted. I chalked it up to being a full-time mom, shuttling the kids from 3:30 in the afternoon until we could muster up a late family dinner at 8:30, grading papers, setting up lessons, and getting up the next day to start over again. This was different: for anyone who’s ever been pregnant, that would be about the closest fatigue I can relate it to. I’ve never been in the military doing patrol and not sleeping for days nor have I ever been a marathon runner completing 26.2 miles in four hours. But this was exactly how I felt. This fatigue was all the time and I just couldn’t seem to recoup.
As the new school year began and I was once again back to momming, teaching, shuttling, and life in general, a peculiar subtle ache – not a pain – appeared in my left cheek. I told my husband, Mike, about it, and we thought I was probably coming down with a sinus infection. After our conversation we decided that it was best to make an appointment with my PCP to stave off this attack on my schedule. During my visit with the doctor the next day I was diagnosed with allergies and he started me on meds. Odd thing was in all my life I have never had any allergies to anything – never a sniffle or a hive. Regardless, I took the medicine, but the sinus pressure never eased up.
In fact, slowly but surely, I was on a steady decline but seemed hardly noticeable. The ache was constantly there but I grew into a ‘new normal’ because it was such a slow progression. Two weeks after I started the allergy meds, I went back to the doctor for follow-up. The symptom of the cheek ache hadn’t subsided, so I was prescribed something different along with a nasal steroid. I was religious in taking the pills and using the spray, but it wasn’t making me feel better: I was still tired, had this dull ache in my left cheek, and then a new symptom appeared. I now had a ringing in my left ear. If you’ve ever been to a concert where the music is too loud and had that high-pitched unrelenting screech in your ear, this is what I constantly heard in my left ear. It was very soft at first, but then seemed like someone turned the volume knob up just a little every day. This became yet another new normal for me.
New normals were becoming a way of life for me. Shortly after the ringing started in my ear, another strange thing happened that at the time I thought, “Meh, that’s weird”. I used to love Diet Coke. One day as I was grading papers, the Diet Coke just tasted funny. It was an acrid flavor that made me cringe, so I poured that one out, got another, and the same flavor pierced my tongue. After two more rejected cans, I poured them all out and blamed a bad batch for the taste. I bought another twelve-pack but the same thing happened. Those were the last cans I would open for the next eight months.
Nearing the end of September, the exhaustion was taking over. I was sleeping in the car after I would drop my daughter, Emily, off at gymnastics or my son, Sean, at tennis. I missed watching those precious practices to sleep in the backseat making sure to set the alarm to muster up enough energy to go in and get them, hear about a new skill but having missed it. There are many little moments like this that I will never get back – one of those many scars on my heart that you can’t see but are there.
About the second week of October I went back to my doctor, feeling completely depleted of energy, with a building pressure in my cheek, and a constant loud ringing in my ear. At this point I was prescribed an antibiotic because the first symptom hadn’t subsided and it was obvious I wasn’t getting better. When my students would leave the classroom for specials or lunch, I would lie down on the bean bags and close my eyes to try to escape the pain.
Now instead of just diet soda tasting funny, many foods lost their flavor for me, and I began to lose weight. The lack of food only contributed to my waning energy, so I found myself sleeping much of the time. Where I was once outside with my kids, I was relegated to the couch because I couldn’t even make it to the bed to sleep. Noises hurt my head so our once happy-child-noise filled house was quiet.
Towards the end of October when I had almost finished the antibiotic, a frightening new symptom appeared: I became dizzy. This vertigo was like that from spinning relentlessly on the playground roundabout, except I wanted off and couldn’t find a way to make it stop. This affected my ability to see and calculate my steps appropriately, so I walked like I had been on a horrible drinking binge. My feet crossed when I walked and I staggered my way around all the time. Driving was difficult, and upon deciding that I wasn’t safe to be behind the wheel anymore, my husband began driving me with the kids to school.
In the beginning of November, I went back to the doctor again, with the mounting pressure in my cheek, the persistent squeal in my ear, and the nauseating dizziness consuming me. I was prescribed another round of antibiotics to combat the sinus problems, and then two new strange symptoms reared their ugly heads: First, I started forgetting simple words and was frighteningly aware that I was doing so. One day when I was teaching, I couldn’t remember the word “dog”. I knew what I wanted to say, even commented that it was the opposite of cat, but for the life of me I just couldn’t remember the word dog. Second, November also marked the appearance of debilitating headaches. Up until this point in my life, I could literally count on one hand the number of times I had experienced a headache. However, this one showed up as a full skull ache and would occasionally radiate up and down my neck. I stopped looking down, because when I looked back up it caused a lightning bolt of pain to shoot up my neck and over my head. Those thunderclap headaches knocked the breath right out of me and would stop me in my tracks. Now I was truly scared.
I went back to the doctor because the headache wouldn’t relent with ibuprofen, acetaminophen, or migraine medicine. The people with whom I worked noticed a change in my demeanor. My energy was gone, I wasn’t laughing anymore, and teaching had become an almost unbearable chore. I don’t know why I fought like I did to work other than my normal had been stolen by a faceless monster that was lurking in the shadows. This monster took the simple joys of my life away: the kids had to be quiet in the house or play outside, I wasn’t the loving wife who enjoyed cooking and conversation that I used to be, and my passion for teaching was gone. Everything was difficult and I simply didn’t have the energy for any of it.
When the Christmas season rolled in it brought with it double vision for me. It was like looking through a split screen where everything from my right eye was three feet higher than my left eye was seeing. The headaches now had a solid hold on me. Much of my time was spent with my eyes closed pushing on my own head to try to alleviate the pain. Nausea became a constant and I stopped eating. I vaguely remember going to buy our tree and trying to muster a smile for the kids. Their wide-eyed wonderment had turned to looks of worry and apprehension for their mommy. They wanted their normal back, too.
We drove to Pennsylvania from Arkansas that year. Usually I would’ve had Christmas music blaring and been singing along with the kids to our favorites. This year I had a pillow on the console and spent the trip pressing my head into it to counter the massive pain in my head. The kids weren’t allowed to laugh at videos they were watching, and every bump in the highway was like getting hit in the head with a hammer over and over.
Upon our arrival, my mother took one look at her emaciated, ashen daughter and scheduled an appointment with an ENT. But it was December 23rd and nothing was available until December 26th. The next two days are a mental blur because I tried to sleep most of the time while there was a chorus of people celebrating the season in the background. I got up on Christmas day for about an hour and a half but had to go back to bed. My head hurt and having my eyes open was genuine agony.
The day after Christmas my husband took me to see the ENT. The doctor wanted to do a full head and neck CT but I talked him out of it. After all, it wasn’t my whole head where I had the pressure, just in my sinuses. They also did a hearing test that showed it was fine. I was prescribed prednisone, Entex, and Cipro for the symptoms I had while we waited on the CT results.
About two days later I didn’t feel worse. Mind you this wasn’t that I was feeling better, but I hadn’t sunk any lower for the first time in nearly six months. I tried to put on a happy face to be able to enjoy New Years, but it was only a front. This had become a horrible new normal and I was truly worried that I would never escape this pain in my head.
We left Pennsylvania and drove back to Arkansas. After completing the antibiotic and the prednisone, my descent started again. This meant a return visit to my PCP where we learned that the sinus CT was clear. He prescribed another round of prednisone and put me on a nasal steroid thinking this must be the cure. However, my life was now limited to lying face down on a couch or floor pressing my head into my hands and gripping my head to combat the agonizing pain.
On January 18th, 2008, my family and I went to a University of Arkansas Lady Gymbacks gymnastics meet. As we were sitting there, I could feel one of those horrific thunderclap headaches building but this one was frighteningly different. It may sound strange but the pain I was feeling was stemming from the base of my spine and crawling slowly up my back. I told my husband that we needed to leave immediately, and was completely in fear of what was coming.
When we arrived home, the pain lurched up my neck and around my head. But this one didn’t leave: it hung on with a vice-like grip. I started retching from the pain and for the next 17 hours I didn’t stop. The problem was exacerbated by the fact that I could no longer stand or even sit up because the change in stance made the vomiting worsen. I laid on the couch getting sick in plastic bag after plastic bag that my husband was holding.
At 2:00 the next afternoon, that exhausted man carried me to the car and loaded me in to go to an emergency clinic. I couldn’t even walk at this point and needed help getting inside. The doctor listened to my story: pressure in my left cheek, ringing in my ear, dizziness, things tasting funny, forgetting things, headaches, and double vision. Upon the revelation of the last symptom, he took his reader glasses off and told me up until that point I was still in the “sinus trouble” category. But double vision was neurological. His diagnosis was multiple sclerosis (MS), but he told me we would have to have a full head and neck CT to rule other causes out. However, the imaging clinic wasn’t open on the weekends for outpatients so now it was a waiting game until Monday. The doctor gave promethazine to stop the vomiting and hydrocodone for the pain, and sent us on our way.
The promethazine started to work and finally there was a reprieve from the vomiting. My headache had unbelievably become worse, and now every breath I took came with a moaning pain. The two hydrocodone weren’t making a dent in the overwhelming pressure in my head. I remember thinking that death had to be better than this, and don’t be mistaken - I loved life and still do. However the agony of being resigned to the couch where I was not an active participant in daily activities made it unbearable.
On January 20th, my mother flew out to be with us. Hearing the diagnosis of MS was enough for her. I’ve heard from her that when she arrived that our house was in shambles: my husband had spent so much time taking care of me and the kiddos that basic chores went undone. A good friend of mine who is a hospice nurse once told me to always remember care for the caregiver. My husband was worn out and just as beaten down from this darkness that had consumed our lives for six months, and I hadn’t noticed. There’s a tremendous amount of guilt associated with this reflection as I think about all he did and all I didn’t do.
January 21st is a blurry whirlwind. I remember it was Martin Luther King day and I had an in-service training for teachers. Mike had left early that morning to go to Dallas for a business trip, and since my mother was there she drove me to the high school for my meeting. It was all I could do to walk in to the auditorium, but I made it. I faked a few smiles and was passed the handouts we were to look over.
And then it happened.
My world went black. I could no longer make anything out that was beyond about eight inches from my eyes. A panicked swell bubbled in my chest, then I burst into tears. Hearing me, the principal gathered my things and escorted me out. I remember telling her my head hurt and that I couldn’t see - I just couldn’t see. She called my mother and drove me home. I vaguely remember the two of them talking and can still hear the sound of concern in both their voices.
A neighbor took my children to watch them while my mother and I drove to the doctor’s office. My PCP said he thought it was time for a full head and neck CT as well and sent us on our way to the clinic. I was dropped at the door, wheeled in to the clinic, and advised of the dye and radiation that I would be receiving. They did the scan and asked us to wait to be sure we got a clear one. About two minutes later, the radiologist came out and said, “You need to go see your PCP now.” When I asked why, he said he couldn’t tell me but he had already called them. Bad sign number one.
I waited while my mom went and got the car, scared because I couldn’t see what was in front of me. She picked me up and we started the five mile drive to the doctor’s office. About halfway through the ten minute trip my phone rang. It was the nurse from my PCP’s office wanting to know if we could stop in. Bad sign number two.
As my mom pulled the car in I remember her saying “oh dear”. When I asked what, she responded that the doctor and the nurse were waiting in the door for me. Bad sign number three.
They escorted us in, sat me down, and then the doctor informed me that a golf ball-sized tumor had been found by the fourth ventricle. I had severe hydrocephalus and that was why my head hurt. He went on to explain that a bed was reserved for me in the ICU and the neurosurgeon was expecting me that day. My surgery was scheduled for 6:30 the following morning. I remember saying to them “Thank goodness. I will either be dead or better.”
The next few minutes were hell. I called Mike to tell him the news. I couldn’t talk so I gave the phone to my doctor. And then I thought of my kids. These were my precious babies whom God entrusted me with….how was I going to tell them the news? Who was going to tuck them in at night? What if I didn’t get to hold them again? Now my heart hurt more than my head.
My mom and I left my PCP’s office and drove straight to the hospital. I remember being dropped off at the door, needing help in, and then a swirl of activity. There were forms to fill out, HIPAA agreements, insurance questions, and phone calls to make. When we finished I was taken straight up to the ICU ward.
The last thing I was able to read was a sign hanging on the outside of the doors to the ICU that read: “Children under the age of 12 not permitted”. Panic set in. I was going in for brain surgery. What if I lost the ability to move my arms and hold my kids again? Would I be able to give them those sweet kisses at night? Tell them I love them? What if I didn’t make it? I remember telling the ICU nurse that if they couldn’t come in, then I would drag every piece of equipment that I was attached to out to the lobby to hold them one more time. And then she did what every caring nurse did for me: she wiped my tears and told me it would be ok. She asked if they were good kids, I said yes, and then she added that if they could be quiet she would let them back. I sobbed.
There were meetings with doctors about the procedure, needles, more paperwork, and then an ominous quiet interrupted only by pump of the morphine drip. My mother was the only one in the room with me when we met my neurosurgeon for the first time. He relayed to us a lengthy dissertation of what to expect: they would shave part of my head, a temporary drain would be drilled into my skull, an incision up the back of my neck to access the tumor, stitches, staples, risks of infection, blah blah blah. It’s all really a blur because I just remember not wanting to hurt anymore. At the end of this conversation he asked if we had any questions. My mother put on her momma bear hat and said, “Yes. Where did you go to school?”
If I had been remotely my normal self I would have face-palmed at this statement. Here is the man who is going to be operating on my brain in 14 hours and my mother is asking where he went to school. Without missing a beat he responded that he had gone to kindergarten in Georgia. A little levity went a long way. He went on to say he had done his undergrad in Atlanta as well as his med school there. That’s really all I remember.
My mom retaliated with “You do know we are going to get a second opinion, don’t you?” He didn’t hesitate and I recall him saying “You do know she has about two weeks, right? Best case?” There was talk about hydrocephalus and infection. There are only a few moments I remember from this time between the pain and the pain meds, and one is my mom’s voice cracking with concern. I’m a mom. I know how much I would want to switch places with my kids if they were in this place. I would. And I know she did at that moment.
After he left there was silence. And more waiting.
Then the door opened and I remember hearing the shuffling of feet as my kids came in to my room. I count getting to hold them at this moment as good as the day I first breathed them in as a new mom. There were lots of tears that we all shed at the impending surgery to come. The pressure in my head hurt, but my heart hurt for them even more. I wished that I had the power to make it all ok for them. There isn’t much that has truly frightened me in life, but this did. The thought of not getting to tuck them in, read stories, and play with my kids was more painful to me than that of the tumor. This was unfair for an 11 and 8 year old to go through.
In the meantime my husband was trying to get from Dallas to Northwest Arkansas in what erupted to be the ice storm of 2008. He had decided to drive from Texas instead of fly because it generally took less time, but not this night. The highway was shut down and he sat about 12 miles south of the hospital where he debated walking through to make it back in time for my operation. He arrived after a fifteen-hour trip at about 4:00 in the morning.
There were more tears and hugs, but I don’t remember much. The morphine was doing its job and my memories from there are a sporadic for the next few days. I recollect odd things: hallucinating about half quarters on the floor, feeling the temporary drain that had been bored into my skull, and the ache in my head that hadn’t left. My daughter would sit on my bed and stroke my hair and it was like being touched by an angel. That was when I realized I had made it through the procedure. Now the waiting game for the pathology report to come back.
That Friday I was out for a weak walk with my ICU nurse. Her name was Chris and she held my hospital gown closed as I shuffled along. We were about a quarter of the way around the ward floor and I mentioned that I was wondering when I would get the word on whether my brain tumor was benign or malignant. She stopped and asked “Didn’t you hear?”
I froze.
“No.” I told her.
She said, “Your tumor is benign. Do you know what this means?”
“Yes. It means it wasn’t cancerous.” Tears were welling in my eyes.
She said, “No, this means you will get to see your grandchildren.” We hugged and both sobbed there in the middle of the hall.
I honestly don’t remember how long I was in the hospital but I do remember going home. And hurting. The incision on my neck went from C7 up to about the middle of the back of my head. My headaches were still as bad as ever and sleeping was excruciating. I couldn’t do stairs or turn my head. Both my mom and mother-in-law stayed with us for a month. I couldn’t take care of myself let alone the kids, so we needed help. This is a concession that was difficult to swallow, but I am thankful for family and friends who lightened our load over the next four months.
About two weeks later I felt funny. My neck felt sweaty and wet, and in fear of an infection I was asking everyone to please look at the back of my neck and head. Everyone said it just looked wet.
I woke up and couldn’t turn my head. My neck was so swollen that it was impossible to decipher where my chin ended and my neck started. And the back of my head was saturated. After an emergency phone call to the neurosurgeon, we made the trip down to the doctor’s office. When I got in there, he squeezed the back of my neck and said “uh oh”. Of all the people in the world you want to hear say that, he was the last on my list.
One out of every five brain surgery patients has a ventricle that fails unrelated to the operation. I was told they don’t know why that happens, but as far as this went, I had hit the brain surgery lottery. My tumor was located beside the fourth ventricle, but number two had called it quits. This landed me right back in the ICU with another drain for extreme hydrocephalus. They also decided that a lumbar drain was necessary which meant a tube that ran from the base of the spine around to the peritoneal cavity. And the doozy: a permanent VP shunt.
My doctor asked me if I wanted all of my head shaved or 2/3 of it. All I could picture was a lopsided ponytail off the side of my head if I did the 2/3 haircut, so I opted for all of it. Nothing could have prepared me for how the following days altered my appearance: I had no more hair, a temporary drain was coming out of the top of my head, and when the doctor determined that the fluid in my head had been regulated, a VP shunt was implanted. I called this “Star Trek Head” as it resembled some alien being on the one side from the shunt itself and all the swelling. Startling is really what it was.
I went home and started over at zero station for recovery. I now had two new incisions in my belly and back: one from the shunt and one from the lumbar drain. I could no longer lie on my right side because the shunt made it more than uncomfortable. My neck still hurt and those blasted headaches still had a vice-like grip on my head.
Sometime in March of 2008 I finally made a turn for the better with my neck. My hair had started to grow back which I called “Chia Pet Hair”, and, along with my Star Trek Head, made for some interesting conversations. My sister sent me some wigs which I chose not to wear. I sort of felt like Jackie O. in them and not quite myself. I wore hats and hoods when outside, but once inside I was always bald-headed. I began taking small walks down our little street and becoming social again and slowly gaining on my new normal.
However, I missed those kiddos in my classroom. That was my normal and I desperately wanted it back. In April I was well enough to go for a visit to my school and see my kids. If you’ve ever known a teacher, the children who walk through their doors become theirs – even the ones that make them want to bang their head off the wall. Teachers fall in love with each and every one because of their strengths and battles. They become a part of who you are as a person. These kiddos had been my source for courage and tenacity and I wanted to be back with them. The visit was just the medicine I needed to keep plugging on, and at the end of April I was allowed to return for half days.
My daughter was in my grade that year. One of the things we had looked forward to was going on the fifth grade overnight camping trip together. The tumor robbed me of that time with her, and I still carry that weight around in my heart that I didn’t get to be with her. It’s a scar that you can’t see, but it’s there.
Through all of this my headaches just couldn’t be beaten. The shunt had been adjusted and readjusted and no setting made a difference. My baffled doctor decided one last course of action: another surgery to tie off the lumbar drain. He didn’t want to remove it because if that wasn’t the source of the problem then I would have to have another surgery to implant a new one.
So in May I went in for an outpatient procedure to have the drain tied off. I remember being scared of the surgery that morning and it struck me how unfrightened I was of the brain surgery. Odd how pain can change your perspective. After a fairly short procedure, I awoke in the recovery room to the same old headache and a look of despair on my husband’s face. We left the hospital defeated and deflated that the headaches were going to be a part of our new normal.
I went home, closed my eyes, and napped, exhausted from the day’s procedure. When I woke up and opened my eyes, I had an unfamiliar feeling. I laid there wondering if I was imagining it, sat up slowly, and realized that, for the first time in nine months, I didn’t have a headache. I could look up and down without pain. I could turn my head. It was gone, just like that. And I haven’t had one of those horrific aches since.
In the five months that I spent in and out of the hospital, we had family and friends who took time away from their families to take care of ours. Meals were delivered. Kids were driven to activities. Lots of love and support was given to our family. And I can never say thank you enough to them.
About a year and a half ago I was in Florida for a conference and a friend convinced me to do a 5K. It wasn’t pretty because up until then the jarring motion of running or even a slight jog sent my neck into spasm. With an unimpressive time I did it in 42 minutes. But I finished, and that was only the beginning.
I started walking and/or jogging every day, and in May of 2016 ran my first full race in over ten years at the Race for Hope Brain Tumor Run in Washington, D.C. I cried for the first ten minutes because I was there and I was jogging. Me! I finished in 31 minutes and my son swept me into his arms when I crossed that finish line twirling my survivor shirt over my head. This was the best hug of a lifetime. This has inspired me to run a 5K every month with a goal of doing one in all 50 states. It will take time, but I know I can do it.
This is my new normal. I am a daughter, a wife, and a mom who had a brain tumor. My hair grew back but isn’t long enough to cover my scars.
Want to see them?
#takethattumor
