JUST THE FACTS
In 2006 I had a grand mal seizure. I died for a couple of minutes, had the whole Near Death Experience, was resuscitated, medically induced into a coma, life-flighted to a city hospital, placed in what is called the “death wing” of the hospital. They found a “foreign mass” in my brain (see the scan below).
They performed open-skull surgery and removed the tumor. After a biopsy of the tumor they declared that was “likely” to be oligodendroglioma. I am no doctor, but I could guess from the name that oligodendroglioma would normally have dendrites like roots, branches or normal brain dendrites. Mine was a lump. I signed a form giving them permission to dissect and study the tumor which indicates to me that it is not well understood.
It is very painful recovering from open-skull surgery, even with intravenous morphine. The recovery was slow and painful. For the next few months every movement hurt my head. I was always cold, even in the summer sun.
I had been advised to come to terms with the “fact” that my illness “is” terminal. I was advised to make peace and prepare. i was told that I had a few years at best.
I was advised to file for SSDI (Social Security Disability Income). But I knew that I could never support a family on SSDI. Even in our low-cost area of the country it could never be done. I had a family to support. I had no choice but to work myself (nearly) to death. I worked as an engineer and even with compliance with OSHA regulations it involved exposure to some particulate metals and other materials. This may or may not be a factor in the growth of the tumor. Oligodendroglioma (if that’s what my tumor was) may also be related to genetics, but they are not sure.
At any rate, I couldn’t step down from my profession and where I was raising my family there were no realistic alternatives. My “medical team” of neurologists, neurosurgeons and such think that it is highly unlikely that oligodendroglioma is related to exposure to such materials but I am not so sure. I have out-lived my prognosis.
In 2009 I had an other grand mal seizure. An other scan revealed an other tumor in the same spot. This time they used “cyber knife” technology to remove the tumor. The operation was a one day in-and-out procedure. There was no pain.
In the months leading up to my first seizure and tumor I didn’t feel different than usual and a few months after surgery I seemed to be mentally and physically recovered with a little loss of specific memories. In the months leading up to my second seizure and tumor I again felt normal. But after the second seizure i have not returned to normal except for phases. After my second seizure, my neurologist strongly recommended that I not return to work or drive or operate machinery due to mental impairment and (lack of) coordination. I was again advised to apply for SSDI.
MY PERSONAL EXPERIENCE
There was a 7 month period from the time they found my second brain tumor to the time they removed it. In that time I was increasingly losing mental capacity and coordination. I noticed my mind eroding and coming apart but my wife tells me that part of my incapacity was that I couldn’t tell that I was in far worse a shape than I could comprehend.
Post cyber knife surgery I regained my coordination fast enough but my mind is something different.
Here’s where it gets difficult for me to remember and describe. Since the second surgery my mental capacity ebbs and flows. When doctors ask me what year it is, what my birth date was, who is the president, what is 4 + 5, to spell a word, to repeat the words “blue, Thursday, apple” and so on, some times I can answer correctly and other times I can not answer correctly.
Sometimes I am very “on it”. In the past few weeks, for example, I have had it together enough to write a tremendous amount. I can concentrate as normal and remember things well enough. But some times I am confused, dazed and forgetful. Some days I just stared at the walls like I was on Thorazine or something. I don’t know what’s going on or where I am and so on.
There are times when I can read a book and comprehend it and there are times when I can not even follow the story of a child’s cartoon!
Sometimes I remember incidents that never happened. For example I once thought I had an entire conversation with my neurosurgeon in which he told me that open-skull surgery would be better for me than cyber knife. When I brought this conversation up to him in his office he assured me that no such conversation ever took place. I can never be sure what memories are real and must ask my loved ones to be sure. Talk about uncertainty!
Sometimes I am hit with anxiety. Other times I get full panic attacks that seem to have no relation to circumstances. It’s all pretty random and chaotic. Even at my most “normal” I almost always feel like one feels at the earlier stages of a psychedelic trip. It’s that swirling limbo where you are definitely not feeling normal, where you tend to feel really nervous and you can feel your mind slipping away and you’re not sure things are going to be OK.
I also am extremely anxious about dealing with people. It’s not just strangers but also friends and family as well. Unless the social interaction is highly predictable (like going through the check-out line at a store) I feel totally alien and anxious. For example, if I try to talk with anyone in Social Services I feel as if I am an alien on trial in a foreign country where I don’t speak their language and I am considered highly suspect. I try to follow what is being said but I rarely am able to.
I am somewhat familiar with the fluctuations that bipolar people go through. But I do not think that is what I am experiencing. I can be happy or depressed whether or not I am mentally competent. They do not seem to coincide at all.
The ebb and flow of my mental competency is not a regular cycle at all. I don’t see a way to predict it either. My only reason for describing this is for the sake of anyone studying oligodendroglioma. Students or doctors wishing more specific information are welcome to contact me at firstname.lastname@example.org