Today

In the nineteen years since I was “not diagnosed” with a brain tumor, my life has naturally changed a lot. While it’s been shaped substantially by that singular event called a brain tumor, my life has been shaped more so by cancer survival. Since that time, I had a beautiful daughter born and married a lovely lady.

19 Years Ago

To cut to the quick, I had a grade 2 brain tumor.  Of course, I was shocked to learn this – especially since it was causing no symptoms.   It was found by accident.  I chose to have it removed.  The removal was successful, but for reasons still unknown, I suffered a near-fatal hemorrhage near the brain stem – the brain stem controls your body’s vital functions.  I’m fine now, and all doctors feel that there is an excellent chance that I have been cured.  I thank God, my then-wife, my neurosurgeon and the ENT that sent me in for my MRI.

Here is my posting to the Brain Tumor mailing list on the Internet (a wonderful support group!):

Let me start my story one year ago. I am a computer consultant, and after making a lot of money for other companies and enduring their bureaucracy, I decided to leave a giant systems integration firm and start my own consulting company. In March of 1997, I formed DataInsight and today we have hired the people that I’ve worked with and respected over the years and we have grown to slightly more than $ 2 million in annual revenue. I am also the proud husband of a wife and father of two lovely boys ages 6 and 1 – 1997 was not so bad, right?

Well, in May of last year I began experiencing cold symptoms. At first, just a runny nose. Then, I was getting this roaring noise in my right ear that would come for a few days, then disappear for a week or two. I went to the family doctor, who gave me some nasal spray and said that if it wasn’t better in two weeks she would send me to an Ear, Nose and Throat specialist. After two weeks, I was still getting the occasional roaring in my right ear. On a climb of Pikes Peak, I decided that I should go to an ENT after my upcoming vacation to my homeland in Illinois. While in Illinois, I experienced a bout of roaring. Upon return, I promptly saw an ENT. I checked out fine (unfortunately, each time I saw a doctor, I was not experiencing the symptoms). This was late July. However, he was concerned that my noise was confined to my right ear. He said that he wanted an MRI done to check for an acoustic neuroma. He said that he rarely saw these (2 times a year) and felt that what I was experiencing was just a gradual declination in hearing.

Both my wife and I had sinking feelings, and questioned whether an MRI was necessary. Well, my MRI of the auditory canals was just fine. However, while I was driving to work the radiologist called my wife to state that I should come in for further MRIs. She immediately called me on my cell phone and I had to pull over. My fears were mounting, right in the pit of my stomach. I called the hospital and the nurse very kindly told me that my MRI showed a shadow and they wanted to do some MRIs from a different perspective. At my request, I got patched through to the radiologist. He said that he saw a shadow above my right eye in a “silent” area of the brain. He couldn’t tell what it was, but had talked to my ENT and wanted to do some further tests.

Shocked, I called my wife and told her that I would be coming to spend the day at home. We prayed and cried that day, and the next day I went in for additional MRIs. After a couple of days, I went to see the ENT for the results. There was much confusion with the nurses to schedule this meeting…apparently, they weren’t aware that my MRI had shown something. Waiting in the ENT’s waiting room was, retrospectively, perhaps the hardest thing we have faced throughout this ordeal. The ENT reviewed the MRIs and said that he didn’t think it looked like any tumor he had ever seen. However, he wanted me to see a neurologist. When trying to schedule the neurologist, he was out on vacation so he referred me to a neurosurgery group. Fortunately for me, I was hooked up with the neurosurgeon that everyone recommended to us later on – by many people’s assessment, he was the top man in the Rocky Mountain region.

The doctor met with us a week later, and unfortunately ruled out what we were hoping for – an old injury (banged my head a few times on my mountain bike). He said that the only thing he could not rule out was a tumor. He also said that this “incidental finding” was very good for me due to my age (32 at the time) and the location – right up front, above my right eye, near the surface; and the fact that it was small and caught so early. He recommended a follow up in two months.

October follow-up MRI revealed no noticeable growth. However, the doctor was concerned that it was a tumor because it didn’t go away. He and his partners discussed my situation and recommended removal because it was a relatively easy procedure and was such a favorable size and location. I consulted the reputed top neurologist in the area for a 2nd opinion. I wanted to get a non-surgeon opinion. He reviewed my MRIs and did an exam, and concluded that the neurosurgeon was right on the fact that the only certain way to tell the nature of the lesion was a biopsy.  (Due to the favorable location, it was recommended that the difference between a biopsy and a resection was small enough to suggest a resection).

However, the neurologist said that his recommendation was not to do surgery but just to do follow-up, because it looked to be a low-grade glioma if it was a glioma. Both doctors stated that removal might reveal that it was a “grade 0” – a hamartoma or something similar.  After much thought and prayer, the “not knowing” was more than my wife and I could bear. I simply could not tell myself that the right thing to do was to go on not knowing and getting MRIs, then one day find out that it had transformed into a grade 3 or 4 and I would leave my family because I was too afraid to take the risk of surgery.

Surgery was Nov. 18 and removal was successful. The surgeon removed the tumor and a wide margin around it. Unfortunately, it was a grade 2 by preliminary tests. A 2 had been explained to me as “the worst it could be” because it could turn into a grade 3 and eventually a 4. Grade 0s or 1s, it was explained, didn’t tend to transform to 2s but 2s quite often became bad 3s and eventually 4s.

After this initial shock (I still wasn’t coherent, but my wife and parents and friends were!), my wife was called at 4 a.m. the next morning by a nurse who stated that I was going to be taken down for my MRI a bit early because I wasn’t that responsive. When I was taken down for my follow-up MRI, I had a seizure. They paralyzed me with medication, did the MRI and found out why I wasn’t as responsive as they’d like. I had hemorrhaged near the brain stem and the bleeding was causing pressure that wasn’t good.

The neurosurgeon wanted me to absorb as much as I could on my own. He told my wife that this could take as much as 3 weeks in ICU, but he was pretty certain that surgery would be necessary sometime during this time. Well, the next morning he didn’t like my responsiveness at all, and I was wheeled in for my “bonus surgery” – 2 days later, Nov. 20th. The hemorrhages were successfully removed and my responsiveness improved.

Saturday, the 22nd I have vague memories. I guess I asked my wife for my pants and announced that we were leaving the hospital, all while confusing her with my nurse, who was a man. On Sunday, I began remembering pretty much everything. I was still in ICU, and Monday a.m. was going to be moved.  I decided that this whole assisted bathroom thing wasn’t for me, and pulled out my IVs and tried to make it to the bathroom. Well, I fell and then bounced my head (yes, the one that hemorrhaged on me) against the tile floor. A CAT scan revealed that fortunately I did no further damage.

On the day before Thanksgiving, I went home. I was thankful, but my balance was still off and I was still numb from the whole ordeal. The hardest thing for me has been not experiencing my ordeal and hearing everyone else’s version about it. Some family and friends were obviously worried that I would die, and some even said I almost did. According to my wife and Dr., I “could” have. So, for the month of December I stayed home.

I was edgy. My wife felt that I was doing very well considering things.  I began exercising, and by Christmas had built my stamina back. I started downhill skiing at the end of the year – 5 weeks after my surgery.

I am doing very well now. I enjoy the things I used to.