So, what’s all this about a brain tumor? The journey began first in the spring of 2009 when I noticed that I could no longer effectively use my cell phone on my left side anymore. There was too much static. I thought I might have some wax build-up or water or something not to serious going on. Unfortunately, by late fall it was noticeably worse and I was noticeably more easily irritated than ever before. All of this was taking place during a time of change and upheaval, you know, life.
In June, my grandsons, whom I usually refer to as my grandelves (L1 and L2), left town with their mother, my former daughter-in-law, K, and her partner, C. This was truly disruptive as the grandelves were usually at our house every other weekend. They were a big part of our lives and this move to Arizona so that Keturah could reconnect with her mother had been pretty well unanticipated. It was even less anticipated that they would be desperate to return in September, asking if they could stay with us a couple of months. Reconfiguring the house, bringing them back, and trying to get two families settled under one roof with a couple of rescue dogs, there was a lot of stress.
Stress increased by my left-side hearing loss. K and C are both soft-voiced. Far too many times I had to ask them to repeat themselves, despite the fact I had let them know early on I was having hearing problems.
As things progressed, I finally got around to finding an ENT with audiologist in the office and I scheduled an appointment. It worked out to be some weeks out, perhaps due to my own failure to recognize this as a potential emergency. I had no idea brain tumors could cause hearing loss; I thought I was just getting older. I learned otherwise in short order.
Immediately following my audiology test, Dr. Armstrong reviewed the results with me and explained the possibilities. Basically, all signs seem to indicate a likely acoustic neuroma – a typically small and benign tumor on the acoustic nerve. So, he ordered an MRI.
Originally scheduled for December 23rd, there was an administrative snafu that caused it to be canceled and then rescheduled for bright and early New Year’s Eve. I left the house at six thirty in the morning, with the bare essentials and paperback. I had never had an MRI before, so this was new to me. I checked in at the hospital, read until they called me back. The tech showed me a little changing room with a locker for my clothes, instructed me to change and wait for her to come back. I did so and read again until the knock on the door. I locked my stuff up, took the key and followed the technician down to the magnet room.
She explained things to me. Put me into position, put a cage around my head, and locked it in place with foam blocks. “I’m going to put you into the tube now so you can get used to it.” She placed a rubber bulb in my hands, “Here’s your panic button in case you have problems and need out. I’ll be talking to you the whole time.”
I lasted about a minute before panic set in. This was not looking good. “Let me sit up please, and collect myself.” She did. I took some deep cleansing breaths and steeled my resolve. “Okay,” I said, “Let’s try this again.” About 45 minutes later we were done. It wasn’t easy for me, but I made through the experience without moving my head and having to reimage anything.
At six foot, four inches tall and weighing just over 300 pounds at the time, the tube was tight fit. Claiming to accommodate a maximum weight of 325 pounds without reference to height, my assumption is that specification applied to the moving table. I had to roll my shoulders in a bit and keep them that way the entire time or else they would press against the walls of the tube. It was a tight fit. Having the technician place a washcloth over my face helped to keep me from being overly aware of just how tight it was.
When she rolled me out, the technician said, “You did good. I really didn’t think you were going to make it after at the first trial.” It was indeed tough for me as I do a suffer bit from claustrophobia, a condition going back to when I was 16 or 17 crawling around in a wild cave in Oklahoma with friends one Christmas. I had the bright idea of suggesting we turn out the flashlights for a moment. That was the first time I ever felt the darkness press in on me. Inside that cave we were crawling through a narrow channel cut by a small river long gone. My shoulders barely fit in that channel as I recall. The two experiences were a bit too similar for my comfort.
Anyhow, I was guided back to the small room with the locker containing my clothes. I dress and sit again to read until the radiologist knocks. I pushed the door open for him and he came in and took a seat across from me. He handed me a CD in a cardboard folder with hospital logo imprinted.
“Mr. Massa, we did find a tumor and have contacted your doctor, at least his office. Unfortunately, your doctor is out today and I did speak with his partner. Dr. Armstrong will want to see you Monday as soon as they can work you in.” He handed me the CD then, “Here are your scans, you’ll need to take these with you. I’m sorry to have break the news to you like this.”
“It’s okay, thank you,” I said. “I’ll wait and see what Dr. Armstrong has to say, after all, this is what we were looking for.”
We shook hands and I wandered out the hospital to my truck, climbed in and started home. It was still early and I knew my wife would still be sleeping, so I went to Waffle House for a lonely breakfast, trying to read, but drawn more and more to the new reality of a brain tumor. While I was pretty shaken, from what Dr. Armstrong had told me, the likelihood was that this was a tiny tumor, perhaps no bigger than a piece of pencil lead, or even a pencil eraser, and most likely benign. While I was in shock, it did not seem incredibly awful.
Once I got home, I went to the computer to start doing research on acoustic neuromas. I found a lot of stuff. Most importantly, I found the website of the Acoustic Neuroma Association and its discussion forums. There was enough information there to keep me busy for much of the day.
When my wife woke later that morning I told her what was going on. I tried to put a positive spin on it as much as I could, especially since I knew so little, and also told her to keep it to herself since we didn’t know anything other than the fact I had a brain tumor. Of course, this was all aggravated by the fact that New Year’s Eve was on Thursday in 2009 and so it was looking to be a long weekend to start 2010. The year started with equal helpings of fear, uncertainty and doubt.
If one looks up “acoustic neuroma” on Wikipedia (http://en.wikipedia.org/wiki/Acoustic_neuroma) , you learn that they are more properly called “vestibular schwannomas” and are benign primarily intracranial tumors that occur in about 1 of 100,000 people worldwide. In the United States, there are typically approximately 3,000 new cases diagnosed annually. Further, they account for about five to ten percent of brain tumors. The Wiki article is full of lots of good information. Some of it is almost scary. As I read it again, some four months post surgery at this initial writing, I see passages I had blown past before that certainly were applicable to me. To be fair to myself though, I never made the attempt to become an expert. I needed to see doctors who were experienced experts in these things. I just wanted to be able to understand the language. Once upon a time I might have tried to become an expert, or at least pass myself off as one, but no longer. It is too much work and there are other ways for me to be responsible for my care. Besides, working in higher education administration for so many years, I have a fair idea of the cost of medical education and I see no valid comparison between a few days or weeks of reading compared to the training and experience of a neurosurgeon that has been digging these things out for the past twenty years.
Sometime over the weekend I decided to name the thing inside my head “Bob.” It seemed appropriate somehow. It also seemed obvious to me in that everyone could simply ask, “What about Bob?” It all had an air of unreality to me. Until winter of 2009 when I succumbed to a family tradition and developed a severely bleeding ulcer, I had never had any real health problems. Yes, I had battles with my weight and knew that according to the BMI tables I was obese, but it never seemed to matter all that much. I had done a fair amount of backpacking in the previous years, complete with high mileage days. Further, it wasn’t all that many years ago that I ran a couple of marathons and ultra-marathons. Truth to tell though, I did seem to really slow down and gain weight in 2009 and I could not understand why.
I’m not used to getting really bad news from doctors. When Jeff, our family doctor, gave me the bad news in 2009 that I had degenerative disk (cervical) disorder that was causing my neck pain, I was relieved to know what it was and was almost cheerful in receiving the news, at least compared to his somber tone. On Monday, January 4th, about 5:00 pm, I got an education in just how hard some doctors take it in delivering bad news. Especially when it is life-threatening.
From my patient record:
Left acoustic tumor or meningioma with brainstem compression. Urgent referral to MCV – Coelho and Broaddus. Discussed various surgical approaches and risks, including unilateral deafness, dizziness and facial injury.
And then under “History of Present Illness”:
The patient is a 47 year old male who has come to review a CT scan. CT review notes: MRI shows enhancing 4.4 cm left posterior fossa lesion most consistent with a CP angle meningioma. Compresses 4th ventricle with hydrocephalus.
Oh, holy fuck! I’m sorry if you find that offensive, but when you read this stuff about yourself, those three words express a world of hurt and fear. Four point four centimeters? That’s almost two inches! A golf ball is only 1.68 inches or 42.67 mm in diameter – a fact I have known for years and that immediately came to mind as Dr. Armstrong showed me the pictures of Bob. The long and the short of it was that I had something like a golf ball underneath by brain pressing against it and my brainstem. From what I could understand looking at the scans, it was compressing the brainstem to about a third of normal size in that place.
Six weeks later I underwent a surgery that was anticipated to last 14-18 hours. It was closer to 32 hours. The anticipated three to five days in the hospital stretched to 12 in ICU and would have gone weeks longer in rehab if the surgical team had not let me go home. Ten weeks later I was back to work.
There is more to the story, but perhaps that is best lest for another avenue.