Brain tumors are scary things, especially when they cause unexpected seizures at the most inappropriate times--like your oldest son's high school graduation. Looking back, I should have paid attention to the signs that presented themselves quite clearly. However, I wasn't the only one in denial about my tumor.
The following is a retelling of the events that led up to my most recent surgery. It is meant as a cautionary tale for those who may have the same type of tumor as me. It is also meant as a sort of PSA for everyone to pay attention to symptoms and don't dismiss or deny chronic headaches.
I'd been having increasingly bad headaches since last summer. The first indication that the tumor had regrown was that I could no longer lay on my belly in bed to read (my favorite reading position) without my head throbbing. All the literature I had read said that the type of tumor I have, called SEGA, was super slow growing. My team of caregivers, including my surgeon and the specialists at the Herscot Center for TSC, all assumed that since I was born with the tumor, and it took 40 years to cause a problem, that I would die of old age before it was large enough to cause problems again. Wrong.
I underwent yearly MRI's and my neurosurgeon compared each image to the one previous. The tumor showed no remarkable growth. I asked about the headaches I'd been having and was reassured that the tumor was not the cause. Again, no change in size according to the radiologist and the surgeon.
I contacted my PC and we looked for other causes--tension, stress, allergies, sinuses--and settled on sinusitis. I have had trouble with my sinuses my entire life, so this was a believable diagnosis. My PC prescribed a steroidal nasal spray to shrink the tissues and it seemed to help a little. Two months later (May), I was back in her office because my symptoms had worsened: neck and shoulder tension, throbbing head, visual auras, and nausea. I've had migraines before too, so again, I attributed these problems to tension and migraines. She prescribed a muscle relaxant for the tension. I took the medication as needed, but the problem didn't completely disappear.
I should say that back around Thanksgiving, I had decided to quit my job as Library Assistant at the local elementary school. I had just begun my third year and I was exhausted all the time. I attributed it to the demands of balancing a full time job with three teenagers, a husband who traveled a lot for his job, my frustration with not having time (or energy) to do the things I enjoyed. I wanted to write, garden, keep my house clean, and most importantly, be a better wife and mother.
In order to be fair to my supervisor and my coworkers, I knew I had to finish out the year. I was determined to fulfill my commitment to the school, but my heart wasn't in it. For six months, I struggled with the anxiety and stress of wishing I could just be done with my job and the guilt for feeling that way. Stress, anxiety, tension--of course I blamed these for my headaches too. If I could just make it to the end of the school year, then I could relax and all my problems would go away, right?
I almost made it. On June 1, the day of my son's high school graduation, I had a headache with auras, and nausea. I tried to power through. My parents and in-laws had come down for the event and I was determined to make it a good day for everyone. On the way into the high school, I vomited in the grass. I should have known then.
Once we got inside, we sat toward the back in case I needed to go to the bathroom. I remember zoning out a bit as we waited for the ceremony to begin. Then I began to sob uncontrollably. I never cry. The last thing I remember is seeing the graduates lined up, ready to march in.
Apparently, I vomited again and they ushered me out to the hallway. I had a seizure. I never have had a seizure before. Someone called 911 and I was brought to Harrington ER, where I had another seizure. I was transferred to UMass Medical, and then to St. Vincent's (where I had my first surgery). I remember bits and pieces of these events, like the trees passing by during my ambulance ride. My family has filled in some of the gaps for me, but I know I'll never remember it all.
I really wish I could have seen my son graduate. That may be the saddest part of it all for me. I'm grateful to my parents and in-laws for taking care of my children during this time. They knew just what to do, how to handle the situation, and what to say to the kids. Luckily, none of my kids saw me have a seizure and I hope they never do. My husband has been traumatized forever by witnessing his wife seizing.
So now, three weeks later, I can say I'm half way on the road to the 6 week recovery period. It really takes longer than that, but 6 weeks is a benchmark used by most surgeons. In the coming weeks, I plan to increase my endurance so that I can rock this totally badass hair the Nine Inch Nails concert on July 29. Fourth row tickets will not be given away!