The long-awaited diagnosis:

I guess you could say I had a lot to be stressed about at the beginning of 2005. I had flipped schedules from nights to days, and then back to nights again. I had been getting a lot of headaches, which was very unusual for me. I shrugged this off, thinking it was because of drinking more coffee than my body was used to. It wasn’t until other strange things started happening that I took the headaches more seriously. I started having visual disturbances. I don’t know how to describe them except it was like having “holes” in my vision at times. The most disturbing symptom, though, was the pulsatile tinnitus I was experiencing when I’d lay down. It started off only happening for a few minutes, but after awhile it was a constant “whooshing.”

At this time in my life, I only went to the doctor once a year. I was healthy as a horse. Most of all, I never was one to run to the doctor for a cold or a cough. I only went when I had to, and I dreaded it every time. I remember talking to my mom, who is a nurse, about my symptoms. She told me of a friend who’s sister had similar symptoms and was diagnosed with a brain tumor. This was the first time I really thought this could be something bad.

I had been up all night at work, and right as we were talking about brain tumors, I heard a knock at the door. It was people passing out religious pamphlets about heaven. I remember one of them saying, “Did you ever imagine such a wonderful thing?” I had been pretty much ignoring God for most of my adult life. I wondered if this was some kind of sign.

Shortly thereafter, I decided it was time to make a doctor appointment. I was still having visual disturbances, and the whooshing in my ears was quite bothersome. I made an appointment with Dr. David Hayes. Since I only went to the doctor about once a year, I didn’t really have a regular doctor, per se. It seems they were always changing. Dr. Hayes was nice enough, but he tried to blame my symptoms on stress. I understood that headaches could be brought on by too much stress, but why in the world would it make my head feel like it was in an ocean? And why on earth was my vision being affected? When he started mentioning antidepressants, I must have had a look of disgust on my face. Why wasn’t he taking me seriously? I didn’t run to the doctor’s office for every little thing. Didn’t he know that?

I left the doctor’s office that day feeling hopeless. I had no faith in the medical system at that point. I was almost ashamed to be a part of it. Fortunately, Dr. Hayes redeemed himself by calling me the next morning. He said he did more research on my symptoms and thought I should be referred to an ear, nose and throat specialist (ENT). Ok, I thought, now we’re getting somewhere.

I went to see Dr. Paul Newell at Vancouver ENT one morning in February 2005 after a long night of work. He was concerned about the whooshing in my ears and scheduled a CT of the temporal lobe to be done shortly thereafter. The cat scan was pretty simple and only took a couple of minutes. I was kind of nervous about what they might find, but I was happy to be getting the ball rolling.

When the CT came back with no abnormalities noted, I was relieved. We still needed to get to the bottom of my symptoms, though, so Dr. Newell did other tests. He did hearing tests, balance tests, blood work, and everything he could think of within his realm of practice. I was passing all of his tests, so it left us both a bit confused. When my vision problems got so bad that I was blacking out upon standing, he decided I should move on to see a neurologist.

I saw Dr. Paul Jacobson at Vancouver Neurology in early March 2005. We talked about the symptoms I was having, and he looked in my eyes with a bright light. He said he thought my optic disc “didn’t look quite right.” It appeared that I had papiledema, a symptom oftentimes associated with pseudotumor cerebri. I knew a little bit about this condition, but had read that it oftentimes occurs in young women who are quite a bit overweight. At the time I was 126 pounds and not considered to be overweight at all.

After making an MRI appointment for the following week, Dr. Jacobson sent me downstairs to Vancouver eye care so they could dilate my pupils and take a better look. I saw Dr. Paul Keown, who dilated my eyes and had all kinds of pictures taken of my optic disc. I remember him paging Dr. Jacobson to give him a report of what he saw. Dr. Jacobson then told him he should prescribe me a diuretic called acetazolamide. I took the prescription to the hospital pharmacy where I worked. It was right across the street, and I was in no shape to drive with my eyes being so dilated. I would have brought someone with me had I known all of this was going to happen.

I made it home and started taking the diuretic. It seemed to help my vision somewhat, but it made things taste metallic, my hands and feet were tingly, and my ears would ring. These were common side effects of this medication. The thing that tasted the worst was beer. It tasted like metal. Even Mcmenamins Ruby Ale, which I love so much, tasted metallic. It was worth it to have some relief from the visual problems I had been having.

I had my first brain MRI on Monday, March 14, 2005. I was kind of nervous, but I thought if something was wrong in there, wouldn’t they have seen it on the cat scan? Of course, the CT was just of the temporal lobe, not the whole brain. So, I tried to reassure myself the best I could, even though I knew something was wrong. And although I knew that something was wrong, nothing could have prepared me for what came next.

It’s never a good sign when the neurologist himself calls you at home the same day you’ve had a brain MRI, which is exactly what I said to Dr. Jacobson when I heard his voice at the other end of the line. He explained to me that he thought he saw something on my pineal gland. The pineal gland is a tiny, pea-sized gland in the middle of the brain. The only function I knew about this gland was that it produced melatonin. Hm, I thought, is this why I’m tired all the time? He wanted to do another scan the following day with contrast. The contrast would allow them to see the mass more clearly and also show if the mass was enhancing (usually a sign that it is cancerous).

So I went back and had a second MRI, or head shot, as I like to call them. Dr. Jacobson called me yet again, saying I needed to see a neurosurgeon the next day. I remember him saying that he wanted me to see Dr. Shanno “tomorrow, not next week.” Oh boy, this is serious. It was the ides of March, just like in Julius Caesar, “Beware the ides of March.”

Rebound neurosurgical specialists squeezed me in to see Dr. George Shanno the very next day. It was a Wednesday and in the middle of my 7 night shifts at work. Although I was exhausted, it seemed important for me to be seen by the neurosurgeon. I was hoping that they could just take the darn thing out and it would never bother me again. I remember my mom saying, “all they know is cutting,” referring to surgeons. Ok, maybe they’ll just remove this thing, I thought.

Dr. Shanno was a friendly, nice looking young man. Although a brilliant surgeon, he was still in his 30’s, not much older than myself. After a brief introduction, he explained the findings of my brain scan. I’d had no idea of the impact of this thing. He explained all the different types of pineal tumors and what he thought mine likely was. Since it hadn’t “lit up like a christmas tree,” it appeared to be a benign tumor. He also thought due to the amount of hydrocephalus (literally, water head), it had been there a very long time. He explained this by pointing out that this amount of fluid in the brain brought on over a short amount of time would have caused unbearable headaches. Mine were simply annoying.

Dr. Shanno said my tumor was most likely a pineocytoma, which was a slow growing benign type of tumor on the pineal gland. I asked him if it could be removed. He looked almost frightened at the thought of this suggestion. He informed me that this was not a good idea, and that it had rarely been attempted. I guess I’ll take a benign inoperable tumor over a malignant operable one. Benign is a very good word to hear when you’re discussing tumors.

Although Dr. Shanno could not remove my tumor, he needed to do something about the fluid that was building up in my brain. My ventricles looked like full moons instead of the slivers they should have looked like. This was clearly what was causing my whooshing and visual problems. The best way to have this fluid drained was to place a ventricular-peritoneal (VP) shunt. The shunt would be placed under my scalp, with one catheter end going into my ventricle and the other threaded down to my peritoneal cavity, where fluid would drain and be reabsorbed by the body. The bulge under my scalp could be adjusted with a magnetic apparatus. After discussing this option, I made an appointment for Thursday, April 1^st, 2005, to have the procedure done.

When I found out I had a brain tumor, I was stunned. Knowing it couldn’t be removed was scary. I could almost feel this thing inside my brain tickling me. What is it doing there, I thought to myself. My mother and my fiance had gone to my first appointment with me. We walked out to my car together in silence, none of us really knowing what to say. I decided to break the ice a little bit by humorously saying, “It’s not a tumor,” in the best Arnold Schwarzenegger voice I could do. My husband got the joke but didn’t laugh. My mother got serious on me and said, “It is a tumor, Kari.” I had to then explain my joke, even though it really wasn’t funny to begin with. Sometimes we turn to humor to cope with things.

I went home and tried to sleep. I had to work that night. I don’t think I slept very well that day. I kept wondering why in the world this thing was in my brain. I remember my three calico cats, who normally slept with me, all surrounding my head, as if trying to heal me. They had never slept this way before. Usually there were two at my feet and one at my side. It was like they knew.

…to be continued…