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Well, the title of this post pretty much says it all. Last Friday I received some terrible news ... I have a brain stem tumor. I've had the week to process this and I'm still a bit shocked, sad, and scared ... but hopeful.
Anatomy of the Brain
Back in January I started having headaches. They weren't the kind of headaches I think people normally experience (I rarely ever have headaches or even get sick), the pain was at the back of my head and was a sharp, stabbing pain that lasted 10-20 seconds. The attacks would come on several times a day, and I learned over time that they seemed to be triggered by movement. The attacks became more frequent until May when I finally made an appointment to see my primary care physician. I came in at the end of a really long work day. I had been up at 3am to work a tradeshow in Orange County and was completely exhausted. When I was asked to lie down on the table I thought I was instantly going to fall asleep. I was also coming off a crazy busy week and I'm sure I seemed ridiculously frazzled. The doctor counseled me on stress management and proper sleeping habits, and told me that she thought my headaches were from stress and lack of sleep.
Love this Picture from My Job
I changed my sleeping habits and went from 5-6 hours of sleep to 7-9 hours of sleep, yet the headaches remained. I came back in again in July and this time the doctor prescribed Naproxen. They still weren't sure what was causing my headaches.
Side story - back in March I noticed that my smile was crooked. I knew this was a recent development since I looked at my face critically every day (thanks to my job), and I know that my face was almost exactly symmetrical prior to this. I work in the aesthetics industry on a medical device for wrinkles. I stare at people's faces all day and can notice slight imperfections, I totally knew my face had changed. I asked my boss and several of our doctors if they could notice something was off. Everyone told me I was crazy and not to worry about it.
Crooked Mouth & Cheek
Well .... when I was with my doctor in July he suddenly stopped and stared at me and said "I think you have Bells Palsy!". What?? That's what I had been saying! He called another doctor in for a second opinion, but she dismissed the idea and then told me to find another job since the fact that I thought my face was crooked was some neurosis from being in my industry.
Back to the Naproxen, I took it for three weeks before giving up. I asked for a referral to a neurologist and was finally in the queue to see what was really going on in my head. Unfortunately there was a 2 week wait to make an appointment (thanks insurance referral) and then a 6 week wait to see the doctor. In this time the headaches continued. Over the course of the year I also received several massages and had three chiropractic visits. Nothing helped.
The day finally rolled around in September when I could see the neurologist. He seemed less concerned with my headaches (saying they were probably muscle spasms) but seemed highly interested in my facial palsy. Facial palsy is usually caused by damage or infection to a nerve, and he wanted to do a MRI to get to the bottom of it. My appointment was last Monday, the MRI was on Thursday, and on Friday I received a call that almost made my heart stop. The neurologists office called me asking me to come in that afternoon, and said that my doctor didn't even work that day, but was coming in to see me. I was on the way to meet a friend for lunch and it took everything I had not to start crying or throw up. I told my friend what was going on, but pulled it together and tried to think positive thoughts.
I'd Describe an MRI as Getting Into a Coffin with a Jackhammer
David met me at the neurologist's office right after lunch and we received the bad news. The MRI revealed that I had a large brain stem tumor. The tumor was was pressing on one of the nerves which is why I had facial palsy, and the tumor was restricting the flow of spinal fluid and was also causing a fluid build-up in my head which was probably causing the headaches. Shocked. Stunned. Terrified. Devastated. I went through all of these emotions within minutes.
I had the weekend to process the news and then this week has been a flurry of doctor's appointments and planning. I met my neurosurgeon and neuro-oncologists this past Tuesday. The plan is to perform a biopsy to see what type of tissue the tumor is. They are pretty sure its cancer so they are preparing to have me go through 6 weeks of radiation and then 1-2 years of oral chemo. Due to the location of the tumor they can't remove it. I need my brain stem to live. This means they can only treat it and hope that it shrinks. The tumor appears to be slow growing and they think it developed over a number of years. This means that it will also be slow to respond to treatment.
The neurosurgeon is going to place a permanent shunt in my head to drain the fluid from my head down into my abdomen. The shunt placement procedure and biopsy will both be performed on Monday October 8th. To say I'm scared is an understatement. I'm scared of the surgery, I'm scared of the treatment, and I'm scared of the outcome. Throughout this all though I'm doing my best to maintain a positive attitude. I don't believe in my heart that its my time to go. I have faith in my doctors and God to save my life. The support I've received this past week from friends and family has been mind blowing. I have never felt so loved in my life. I hope that I can channel all of this positive energy and remain strong through this tough battle ahead.
Sign at the UCSD Moores Cancer Center That Made Me Smile
I was in the process of training for the Marine Corps Marathon in October and California International Marathon in December. Those are obviously both out and at this point I'm not sure I will try to do any other marathons. For the past week I've just been running a few miles here and there every other day. Its enough for me to get a sweat going and to feel good. My boyfriend David and his family have been amazing throughout this all, and I will be leaning heavily on them and my family and friends going forward.
All three of my doctors are the Chiefs of their departments at UCSD. I believe that I'm in the hands of the best of the best. I feel like its a good thing I'm a marathon runner, because I'm up for tough challenges. I'm going to fight this with everything I have, focus on the future, and remain positive.
