The Progression of Symptoms
Hey everyone, I’m from across the pond. (I just love that expression!) I was born in the central and northern state of Minnesota in the United States.
I’m now 25 years old, but my brain tumor journey probably began three years ago.
Three years ago I was finishing up me undergraduate degree in college. I was studying Spanish and German and decided to live abroad once I finished. I had already studied abroad in Chile, so I
made up my mind to return. A few months before graduation, I experienced some strange symptoms for the first time: weight loss, headaches, and forgetfulness.
I attributed it to the stress that I was under to finish my degree and start my new life in Chile.
I’ve always been a little ditzy, prone to headaches, and I’ve basically been
able to eat whatever I want without fear of gaining weight. Suffice it to say that although the symptoms were more acute, they weren’t entirely uncommon.
In May of 2008 I made the transition to South America. I quickly found work at several English institutes working under the radar and teaching my native language, which, at the time, was my only marketable skill in Chile. The schedule was rigorous and the administration of the institutes was chaotic at best. A typical day would start at 6 AM. I would be on the metro by 7:00 and ride it for around 40 minutes until I got to my first class usually held at the office of the student.
The day progressed like that, one class, travel by foot or metro, next
class, repeat as desired until around 9:00 PM. Needless to say, I started noticing some new symptoms at that point. One foot would go numb occasionally. Sometimes, it felt like my shoe did it. Other times, I was convinced that the weather played a part. In a panic, I looked up the symptom on Google and convinced myself that I had MS.
The next day, I had class with one of my favorite students, a doctor
at one of Chile’s best hospitals. He was very perceptive and knew that something was wrong. I shouldn’t have done it, but I told him about my foot. Instead of being angry that he was wasting his money listening to me vent about my erratically numb foot, he gave me a referral to a friend of his, a rheumatologist.
The next day, I had an appointment with her. Unlike doctors I’ve visited in the past, she listened intently to me and even worked to understand my broken Spanish. After an exam, she concluded that
it was probably a mixture of things: my fibromyalgia, my systemic mastocytosis,
the stress of my job, the lack of sleep, and walking on the cobblestone streets in high heels. She gave me some pills to help loosen up the tight muscles and some more pills to help me sleep. I took them for a week and felt better.
About a year later, I was still working in Chileand I started to lose weight again for no reason. That time, I chalked it up to stress at my new job where nothing was going as I had planned. I
also started having moments of déjà vu. I had instances where I would get off at my stop on
the metro and wonder where I was and what I was doing. Other times, I would get off at a new stop and feel strangely as if I had been there before.
A year after that, I was in transition once again when I got a terrible headache that lasted over three weeks.
I had just started an MBA program and was taking classes online; I was looking for a new job in Chile; and I was moving in with my Chilean fiancé. The headache was primarily behind my eyes, but mostly the right. I sometimes felt like a ball was pulsing at the base of my skull, radiating intense pain to my eyes. I thought it was the sinus infection I had a month or so earlier. I took a round of antibiotics and considered myself cured, but obviously was not. I visited another doctor and she put me on a stronger and longer round of antibiotics.
The headaches abated, but the auras did not. Every so often, I would see an aura, or visual migraine. The lights would start dancing slowly, sometimes dots, sometimes lightning. Soon it would worsen and my entire field of vision would be compromised. An episode like that always left me feeling weak and uncomfortable afterward.
I got a new job as a translator and had to leave a couple of times because of the auras. I think they thought I was making it up, but they appeared, at least to my face, to understand. It was
around that time that my work visa
was going to expire. I found a cheap ticket to visit my family in the U.S. and I flew home.
The plan was to be back for only three weeks. I made an appointment with
my oncologist/hematologist because I attributed the new headaches and auras to the systemic mastocytosis. Systemic mastocytosis is a systemic mast cell disease in which mast cells can build up in different tissues and organs, including bone marrow and the intestinal tract. My oncologist knew me and my history, so I thought she would also know what had been ailing me.
When I arrived at the appointment I began with the laundry list of symptoms and, as usual, she listened and then stopped me and said my symptoms didn’t sound like typical mastocytosis symptoms.
recommended a CT of my sinuses to rule out another infection and, if that was clean, an MRI.
The CT of my sinuses showed no sign of infection and I prepped myself for the MRI. I was terrified of the small, coffin-like machine that, from what I heard, shook and made loud noises. They gave
me a prescription to take prior to my appointment that would relax me.
Fortunately, it did. I was still relaxed and groggy three hours later, when my oncologist called and asked me if I was sitting down. I wasn’t sitting down, I was lying down! I had been asleep just moments before. She calmly told me that they had found a lesion in my brain and that there was swelling around it. She told me I needed to meet with the hospital’s neurosurgeon as soon as possible and she was sending me a prescription for decadron, a powerful glucocorticosteroid often used in cancer cases and to bring down swelling in the brain.
Even though my oncologist seemed concerned I still wasn’t. A lesion, I remember thinking. What is that? Is it like when Ibump or cut myself? I didn’t grasp yet what it meant.
What happened next was a blur. I walked into the neurosurgeon’s office the next day. I brought my mom, because even if I didn’t think it was serious, she did. The nurse chatted with us as she
updated my charts. Then she asked if I wanted to see my lesion. I said I would and she brought up the MRI images of my brain. There it was. In a sea of normal, healthy brain tissue was a large, gray
tumor. Extending from it looked
like ripples, and there was what appeared to be a foot that hooked up to my brain stem. I went cold, but the nurse didn’t seem to notice and kept chatting.
The surgeon entered shortly afterward and said the words that made my heart stop: “You have a brain tumor. It needs to be removed immediately. This part you see here is swelling and that’s damaging your healthy brain.” He went on explaining that because of the location of the tumor on my occipital lobe, but more inside my brain, he would have to take a different route to the tumor.
I started crying, “But this is who I am! This is my personality. This is all of my memories. What if I forget my Spanish? What if I forget what makes me me?”
He assured me that was unlikely to happen. He said he had seen tumors like this before and operated on them successfully. He, also, said that he was 95% sure that it was a benign tumor.
What he asked me next surprised me. He asked me if I had any strange symptoms leading up to this: auras, numbness, tiredness, weight loss.
He told me that he attributed it all to the tumor and the scariest part was when he said I had probably been having seizures—or what I thought was a simple aura—for over a year.
They scheduled my surgery for ten days out; just past the 4th of July holiday. My Chilean fiancé flew in to be by my side during the operation. I had moments where if I could have, I would have yanked the tumor out myself. Once you are given the news that you have a brain tumor, it feels like you have a time bomb inside your head and every second feels like an eternity.
In my more panicked moments, I would google brain tumor statistics, or watch an episode of House, and put myself in such a state that I was convinced I would die on the operating table or that the tumor would be malignant and I had less than six month to live.
Fortunately, my family and friends were amazing. They didn’t understand what I was experiencing, but they were there by my side, helping me, praying for me, and supporting me 100%.
The night before the operation, my fiancé and I looked up scarf tying instructions. I knew I would have a large scar on the back of my head for a while. I told him to leave the room as I watched some instructional videos made by a woman who had cancer and cried silently.
After that, I had to give myself a bath with anti-microbial wipes as per my pre-op instructions. The wipes smelled like cleaning fluids and burned my skin. Once I finished, I wasn’t supposed to rub my skin, shower, put on lotion, or touch anyone.
The day of surgery I was nervous and tired. I hadn’t slept at all the night before. I wasn’t allowed to eat or drink any water except for a sip to swallow some pills.
At the hospital, they hooked me up to three different IVs or drips. They administered a pre-op antibiotic, but due to the mastocytosis I reacted badly to the antibiotic and my body turned red and my blood pressure plummeted.
Suddenly, there were two doctors and a nurse standing around me,
giving me an intravenous antihistamine and oxygen.
Finally, it was time to roll me into the operating room. They allowed my fiancé to come into the room and hold my hand as the anesthesia took effect.
Post Surgery and Recovery
I recall waking up to the tone of my doctor’s voice and realizing I was in a hospital room surrounded by my concerned friends and family.
My surgeon was explaining that the surgery was successful and I remember thinking that was a good thing, but I couldn’t muster
the strength to respond. I noticed that the room seemed distorted. The doors were taller and skinnier than the people. There were zigzagging lights everywhere and I saw bubbles in the corner of my eyes. I rubbed my eyes to see if it would go away. My surgeon stopped his monologue and asked me why I was rubbing my eyes and I told him what I was seeing. He said that because they operated on my occipital lobe (the lobes responsible for vision), I would see the hallucinations until my brain started healing.
I was in the hospital for about a week during which time I was put on anticonvulsants, took occupational and physical therapy and waited for the hallucinations and migraine-like pain to
People with mastocytosis are sensitive to narcotics and every pain medication they put me on made me react badly. They had to add some powerful anti-nausea drugs to the list to keep my vomiting under control so that my head wouldn’t burn each time I threw up and so I could keep down food.
Between the surgery, the vomiting, and being unable to move, I lost quite a bit of weight. I joked that I looked like a boy. I had cut my hair short before the craniotomy and without any extra weight, I looked androgynous at best.
Eventually, the pathology results came back and my physician’s assistant told us that it was a low-grade meningioma. It was just in a strange location and had grown to a large size.
When I was let out of the hospital, the pain, vomiting, and visions of things dancing in my peripheral vision did not end. I had to have someone with me constantly for the first two weeks.
I couldn’t sleep and ate like a bear due to the steroids I was still on. I also
became prone to flying off the handle at the slightest provocation.
I continued going to occupational therapy for a few sessions, but I stopped because I figured I could do the same therapy on my own in my own house without having to wait for a ride to take me to the clinic.
The headaches got worse. I ended up in the emergency room four times because my headache was so strong and I was vomiting so much that I was convinced I was dying. Surgeons don’t often address
issue my migraine post-craniotomy, but it’s a fact and it happens to some
people—especially people with a predisposition to migraine headaches. My
neurologist prescribed a second anticonvulsant to control the headaches, and it worked like a miracle. For the first time since my craniotomy, I was headache free.
One Year Later
As I write this, it’s been 13 months since my surgery. I still don’t have peripheral vision in my left eye. I also have a sliver of a blind spot on the left side of my right eye. I’m told this will probably not go away.
I almost lost my license to drive because of my vision and the prescription for anticonvulsants, but finally my doctors agreed I wasn’t a danger to other drivers and agreed to sign a letter reinstating my license.
I still take the anticonvulsants—albeit a lower dose--in part for migraine control and, in part, because if I stop I see the aura again.
I’m not sure when I’ll be able to completely wean myself off of them.
About a month ago, I had an MRI and it was still clean. The MRI tech showed me the splices of my brain. You can still clearly see the hole where my tumor was, and even the incision that my surgeon made to remove the tumor. My prognosis is good.
To this day, I still notice some weakness on my left side. I have some new twitches that I never had before and sometimes I fall asleep with a myoclonic jerk or two.
I haven’t worked since before my surgery, but I recently got a job and start at the end of August, 2011. I’ve been working on finishing my master’s degree online and focusing on my recovery, but I’m so excited to start work again that it’s hard to describe it.
It might be one of those things you have to live through to understand.
It’s been a difficult year. I found out that my fiancé had cheated on me and I lost a good friend who couldn’t or wouldn’t understand the difficulties I was going though and accused me of “self-pity” and being “depressing” to talk to. However, I’m feeling good. I’ve been practicing yoga to get my balance and strength back and find mental clarity.
Although it was a painful year, it was a year that taught me a lot about myself and what it is exactly that is important to me.
I emerged from the ordeal changed and with a new perspective that I feel
sets me apart from people who haven’t experienced anything like this.