Brain Injury and Recovery

In 1986 I was surveying at various government sites before I was diagnosed, primarily military

installations.  One year later the government shut down and declared one of the instillations I surveyed a Superfund site. It was closed to the public since it was too expensive to clean up. I was having terrible headaches, so I was seeing a doctor in Louisiana, where I was surveying at the time. I was diagnosed with stress, tension, and back spasms; the doctor prescribed valium to relax me. I was working on my own studying and practicing meditation to help relax. I thought living at home with my parents, having flunked out of college, was stressing me out. In the end, the doctor had me on 6 valium a day and I could not move my chin from my chest.

When I got home one weekend from surveying on the road, I visited my family doctor.  He took one look at my eyes, and my condition, and said that I need to go to the hospital and ordered various tests done by different specialist. The CAT scan showed the brain tumor and was told by the neurosurgeon that I had cancer. The reason I couldn’t move my chin off my chest was because the tumor was blocking the cerebral/spinal fluid from draining out of my brain. It was the only position of my head that would allow the cerebral/spinal fluid to flow from my brain down my spine like normal. It was building up enormous pressure in my head.

I asked the doctor if he could remove a lump on my head while he’s in there. He looked very concerned at first but after inspecting it he said that it’s just a cyst and he wants to get in surgery and out ASAP so the cyst can wait. They had to remove a tumor from my cerebellum.

In the first surgery they drilled a hole through my skull to release the pressure. The doctor said fluid shot 6 feet in the air. He said he’d never seen that much pressure. The next day they removed the tumor. It took 8 hours for the surgery. The tumor was a stage 4 Astrocytoma.

Over a couple months in the hospital, I went from not being able to sit up, to sitting, to walking with nurses down the halls with my tubes that went into my body, to finally getting to take a shower while sitting in a chair. It was a banner day to be able to get in the shower. Later in life, my mom told me that the doctor said that I had approximately 6 months to live. I never asked, so he didn’t tell me. I guess they missed their estimate.

I remember one particular day while in the hospital I wasn’t feeling good. I was tired of lying in that bed in the hospital-I was really tired of all of it. My Neurosurgeon came in and looked at me and could tell I was feeling down.  He told me that he can only do 50% of the work to get me better. 50% has to come from me and my attitude. Now, I don’t know about those actual numbers, but your attitude is a big part of recovery. Especially later in recovery/survival.

Back then, I guess they didn’t have chemotherapy drugs to help with brain cancer so the only tool besides removing the tumor was radiation. It made me very nauseous. One day, I remember projectile vomiting all over their bathroom at the radiation center. And that was before my radiation treatment for that day. The doctors tried all kinds of medication to calm my stomach, and restore my appetite, but nothing worked. My stomach finally calmed down and I was able to finish my treatments.

After approximately 9 more months at home, I returned to work. The Corps of Engineers put me in a new job in the office instead of on the survey crew. I wasn’t capable of walking that much, especially in a straight line. After a few years they allowed me to work part time so I could return to school part time. I think going to school and finishing my Engineering degree was one of the best things I did for my brain and for myself. It was very hard but I pushed through it and graduated.

In 1993 I was hired by the COE Walla Walla District as an environmental/Civil engineer. I moved to Walla Walla but had problems again in 1994. Scar tissue was blocking the cerebral/spinal fluid from exiting my brain and going down my spine. I spent a weekend on the floor of my apartment, totally out of it. I called into work to see if someone answered so I would know if the weekend was over since I didn’t know what day it was. The secretary answered. I hung up. But I called back and told her I needed help. A friend that I worked with, came and picked me up and took me to the emergency room. I just remember the doctor holding up a pen and asking me what that is. I knew what it is but couldn’t say. My friend was looking at me like l was crazy; he didn’t understand what was going on. I had an MRI to confirm the problem. The Walla Walla neurosurgeon had discussions with my Fort Worth neurosurgeon in which they agreed that I should go back to Fort Worth and my original neurosurgeon will perform the surgery installing a shunt in my brain to relieve the pressure. My sister flew up from San Francisco and escorted me on the flight to Fort Worth. I stayed in Fort Worth approximately 6 months recovering after the surgery. The doctors shaved half my head to install the shunt. Not long after the surgery and returning home to my parent’s house. My good friends asked me if I wanted to go to a Texas Rangers baseball game with them. They had season tickets and we used to go a lot. So, they picked me up and were too nice to tell me that I forgot a hat and half my head was shaved. I realized when we got there that I had forgotten a hat. Oh well, I figured I would buy a hat at the game. When we got to our seats, a few rows in front of us was a punk rocker with the same doo. I felt at home.

I worked as engineer for years, got married and had 2 wonderful kids. Eventually moving to San Antonio and back to Walla Walla as a Project Manager. I didn’t have too many problems in those years.

But in 2010 the shunt malfunctioned causing noticeable hearing loss. I first went to an Ear, Nose, and Throat specialist because of the hearing loss. He wanted me to have an MRI just in case, especially given my history. I had the MRI and returned home. I hadn’t even sat down when the phone rang. It was the radiologist that had read my MRI and he was frantic telling me that I had to return to the hospital immediately. As I was trying to argue with him that I would be fine until tomorrow when I meet with the ENT doctor at my scheduled appointment, he suddenly went quiet.  After a period of silence he said, “so you can talk”? “Yes, I can talk”! “I guess you’ll be ok but make sure you see your doctor tomorrow”. The Neurology team of Neurosurgeons and Neurologist were meeting regularly to discuss my case. Meanwhile my symptoms were getting worse. My hearing was worse, My thinking was slower, my reaction time was slower. I went from staying off highways to not being able to drive at all. Everything was coming at me faster than I could process and react. I had taken a leave of absence from work. My wife at the time questioned my Neurosurgeon as to why they hadn’t immediately done surgery. He told her that because if what is wrong with me is what they think is wrong with me then they aren’t sure why I’m alive or at least not in a coma.  The shunt had malfunctioned and was releasing all fluid in my brain. I had zero pressure. I think this was probably because I wasn’t pressing the manual bulb pump enough and it blew out. I had surgery soon after that. They installed an inline syphon in my shunt that didn’t rely on me pressing. Which I call a pressure gauge. It keeps the pressure of the cerebral/spinal fluid in my brain at 90 mm of water constant. I immediately felt better the next day and was at the golf driving range within a week.

But soon I was having what they called mini strokes. During these times my right leg would go numb and would feel goofy. I remember going over one of my many MRIs with my neurologist. My brain looked like Swiss Cheese. He told me that all those dark spots are dead spots from the strokes. Those days I felt worse than the cancer ever made me feel. Then I had the responsibility of a of a wife and kids. Whereas when I had the brain cancer surgery I had very little responsibility at 23. At that point, I was worried that I would die. But the problems eventually went away with blood thinners and I think my brain became used to the new pressure.

Nowadays the only problems I have are a severe lack of hearing, balance issues, slow thinking sometimes (putting names to faces that I haven’t seen in a while, coming up with words), and memory sometimes.

Some of the things that I think helped me get through having the brain cancer were mostly accidental on my part. When people ask me how I survived I tell them I was young and dumb. Even though I wasn’t doing a lot of healthy things, because I was young my body was in fairly good condition. I didn’t have a lot of responsibilities to worry about at that age. And being dumb, I didn’t ever really grasp the seriousness of my condition so I was mostly positive and didn’t worry too much. I was just waiting to get out of the hospital, and party with my friends. I’m a firm believer in the Placebo effect. If you believe you’re going to get better, you have a much better chance of getting better. Going to college and finishing my degree was huge. Although it was very hard for me, looking back it was also very good for me in many ways. Besides giving me the normal career opportunities, growing and challenging my brain was huge. I can’t say I always had a great diet but I did always eat a lot of nuts. Plus, I lucked out getting 2 excellent neurosurgeons assigned to me.

Now, l Work on balance almost daily. And have been practicing Tai Chi for about a year now at the local YMCA. I love it, I wish I had been doing it for the last 30 years. It is challenging for me since your Cerebellum controls your balance and coordination, but I think it is so helpful for my brain in so many ways, not just balance. I try to learn new things, and constantly challenge my brain so it grows.

A big part of growing my brain is diet and exercise. Over the years my diet has become much healthier. I have moved from BBQ beef, chicken fried steak, hamburgers, French fries, soda, pizza, sugary sweets to more vegetables , nuts, beans, and other more healthy items. I still occasionally have BBQ, hamburger, pizza, or a desert but they’re not what I commonly eat. And I don’t beat myself up for eating something. I have also increased my exercise over the years. I was aware that as I aged my metabolism was slowing normally so for many years I tried to get some exercise. But after retirement I was able to greatly increase the amount of exercise I was getting. Plus, I had time to cook more of my own healthy foods.

Over the last 37+ years, people have asked advice as to how to survive having cancer. I would say, be happy, positive, relax, try to eat a good diet, exercise, grow your brain and learn how to use it.

In a weird way, having brain cancer has made me a better person. Definitely more caring, giving, and respectful of other people. I always try to remember that other people are going through hard times, some have it much harder than me. I had been on the normal American modern diet of fast junk food, and if fried that was always best. Tons of sugar in almost everything. Less and less exercise. I was well on my way to a gigantic waistline, health problems and maybe an early grave. I didn’t change overnight but with small steps I changed and it helps. You have to take that first step out of the hospital bed to a chair and keep going from there. And make the decision that you may not be back to where you were, you may be better.