What the Doctor thinks he saw

Sunday 19 April 2009
My side of the bed, home

When I woke up on Saturday morning I felt better than I’d felt in a long time. Was it the reduced swelling from the mega-dose of steroids I was on? Was it the night’s sleep bereft of rolling a large boulder up a hill and then watching it tumble down the other side? The only thing I remember out of an otherwise flatline of a sleep was hearing my son, Jude, crying in the middle of the night, hearing him get up and then knowing that he was ok.

Dr White arrived mid morning and began to doctor me. There was something re-assuring about the way he tested my reflexes, checked my eyes tracking his finger, my pupils dilate and various other oddities of the neurosciences. Then he began with the neuroscience lesson.

From the MRI and the previous CAT scan and his experience he felt that it was more than likely an “Astrocytoma”, one of the more aggressive variants of brain tumour.


What's obvious is that there is some bleeding (the white area) around a darker area of growth.
The most active cells in our brains are called glial cells and they do most of the repair work and maintenance. It follows that if there was going to be any 'bad' mutation that it would more than likely happen in and amongst these glial cells which are constantly reproducing themselves in the process of building the various bits of neuron sheathing, brain scaffolding and whatnot that they do.

Dr White offered that given the size of the growth he could see on the scans and the way the symptoms were manifesting (headache’s and ‘seizures’) he thought that it was an “aggressive” Astrocytoma. Cancerous growth are apparently ranked from grade 1 to grade 4 depending on how active and virulent they appear and behave. He went on to say that until they can do a biopsy on the tumour this is all speculation but that he was proceeding on this basis.
He went on to explain what was going to happen to me in these rough stages:

On Friday 24 April he plans to operate on my brain, removing this growth and putting my head back together. I will go into an Intensive Care Unit (ICU) for a day or two, or until the risk of any bleeding, swelling or infection was ruled out. From there to a general ward at the Cape Medi-Clinic and then home by the following Friday.

Once the scientist dudes had sliced and diced my dragon they will know what to call it on their carefully devised maps of the human brain and then we’ll all get together and talk about what their map suggests is the next step to take. Dr White has told me that if it turns out to be an Astrocytoma then it will more than likely involve 6 weeks of Radiotherapy and a milder form of Chemotherapy.

We’ll cross those bridges when we get there.

What The Doctor Saw

Sunday 19 April 2009
My side of the bed, home

“The castles the mind builds by day
the heart can tear asunder
in a slumber”
Stupor Mundi

So much has happened since Thursday that I find it difficult to pick up the narrative thread of what happened next and what feeling or thought that evoked.

When Sarah and I were alone that Thursday evening I felt, dare I say, excited. There was no part of me that thought that this would end in tears. I remember saying something to her like, “this feels like the first time I went overseas.” And it really has. I remember sitting on the plane, flying to America, exhilarated to be sailing into the unknown, hungry for what was going to happen next.

There has always been that part of me that, like a Meerkat, sticks its head out of the borough at the first sign of anything vaguely interesting and out of the ordinary, even if it is burrowing inside my head.

Thursday night I slept, if that’s what you can call it. It woke up exhausted. It felt like I had spent the whole night pouring the left part of my brain into the right and back again. Sissyphus eat your heart out!

Friday was a busy day, full of distractions, things to do, people to meet, places to go. Thank goodness. Dr White had me check myself into the Cape Medi Clinic where I met him later that morning. He was in theatre all day and popped up to see me on one of his tea breaks, between brain operations. The moment he walked in the door I felt good about what was happening. I told him the story, pretty much like I have here and he had already seen my CAT scan. He asked me if I had been experiencing any ‘other symptoms’. Always one for over-sharing I let him in on what to date has been a very personal journey and for me in no way connected with what was going on… or so I thought.

About 5 weeks ago I was sitting in my office listening to a colleague when I suddenly become hyper aware of everything happening around me. I could hear Theo talking to me. I was thinking about what he was saying and it seemed at the same time I was also aware of everything else that was going on in the street outside, the room next door, and dare I say somewhere else that I knew wasn’t as easily placed and explained as the room next door.

The feeling passed. Then it happened again and again. Except each time it happened it become more layered and nuanced. It felt like something or some other time and place was bleeding through into my waking awareness. At times it felt like a memory. At other times it felt like it was happening to me right then and there. Each time it was an aspect of the same thing. There were actually people in this other time/place I kept bumping up against but I could never see a face or recognise anybody.

The first time I described it to Sarah I remember saying to her that I feel like a new sense has switched on inside of me. I felt like I was experiencing all this extra stuff on another level in addition to the five senses we make do with every day. If I had to locate the sensory organ for this new sense I would say it was inside my solar plexus.

It was at this point that Dr White, my neurosurgeon, piped up and said, “oh that must have been the beginning of your seizures.” What could I say. At that point it dawned on me how limiting the maps are that we have drawn up to describe the territory we find ourselves in. The doctor’s map tells him I’m having a seizure. My map tells me I’m experiencing a world beyond my borders.

Of course there was nothing else to say to Dr White at that time. Probably because he sent me to the City Park Hospital (Christian Barnard Medical Centre) where I had an MRI scan. If you’ve ever had one you will know that it is a very foreign place to be, lying inside a narrow sarcophagus that huffs and puffs with a myriad of magnetic pulses and impulses. A friend wrote to me today about her experience of hearing ‘God’ talking to her during her MRI scan and I knew exactly what she meant.

En-route back to the Cape Medi-Clinic I had another one of my experiences/seizures and was very relieved to be back in the hospital. I was attached to a drip and put onto an anti-seizure medication Epilim and a saline solution to hydrate me. I’m going to get off this Epilim as soon as I can. It’s scary stuff. I totally realise why I’m on it and while Dr White is running the show I’m going to allow him to make this call. But as soon as I’m out of surgery I want off this stuff. Nuff said.

The MRI Scans were sent to Dr White who was still in theatre and he appeared later in the afternoon to tell me what his prognosis was. At this point he hadn’t had the time to inspect me and he made an appointment to meet me the next morning and do a full consultation with the MRI scans and give me the full run-down on what he saw and what that meant. At this point he assured me that if it had been urgent I’d already have been in surgery. This is what his first prognosis sounded like:

I had an ‘aggressive’ tumor behind my right eye which had to be surgically removed as soon as possible. He told me he wanted to operate on Friday after the election craziness had subsided and when he had his trusted theatre team with him. He prescribed a substantial course of steroids containing cortisone to combat the swelling to reduce the pressure of the growth on my brain. He made an appointment to see me for a full consultation on Saturday morning to take inspect me and discuss all his findings and answer all my questions.

I went to sleep on Friday night drugged up to the eyeballs, enough steroids to give the ‘governator’ a run for his money and talk of brain surgery that still left me feeling excited and a more than a little intrigued by what this all held in store.

The Story So Far (OR Why does everything big always involve sex)

Saturday 18 April 2009
Cape Town Medi Clinic
Bed F21 with a courtyard view

I’ve never suffered from headache’s. The rare moments where I have had headaches I’ve rarely taken any kind of medication. The only painful head pain I’ve ever experienced was during and following several dental operations to remove excess teeth during puberty, wisdom’s et al. This was technically not head pain, but in my jaw. But like anybody who’s been ‘hurt’ by a dentist, it feels all the more intense because it’s so close to your brain.

I can remember wondering if an amputated toe could possibly hurt as much. If somehow the nerve impulses could somehow loose some of their urgency if they travelled over a greater distance. Anyway, the question was there and obviously not important enough to ever answer because I didn’t go on to study medicine and neurology, instead I chose to become a student and practitioner of a different kind of signalling science, choosing to explore and learn how to send signals through the ether, through the air, using the power of light to flicker and touch a different set of nerves, to trigger a different set of impulses, some painful, some not, some exhilarating, some edifying.

And so to last week. I was making love to Sarah when I started to feel a tension, a fiery burn up the right side of my neck. Perhaps if I was watching TV at the time I would have paused sooner. As it was I was consumed and otherwise occupied. I only realised what was happening when the pain exploded like petrol thrown onto a flickering fire. Suddenly this white-hot hand seemed to reach up out of my neck, gripping the right side of my head, squeezing my ear, my eye. It was like the worst kind of sinus pain I’d ever experienced and more. I fell down on the bed and all I could do was dive down into something like sleep where I felt I could escape the worst of it.
Sarah fearing the worst kept waking me up every hour to check on me and in this way we made it through the night (thanks Louis Ferdinand Celine). The next day I spoke to my two doctor friends, one who happenes to be ‘my’ doctor and between them we established that a sudden painful headache without any other symptoms may not be a ‘worst case’ scenario and I promised to report any other changes in my condition.

For the remainder of last week and this week I had a mild headache that half wasn’t there. If pressed I would admit that it was hanging around the right hand side of my head. After a lifetime of no real headache’s I was beginning to wonder what this was about. Then on Wednesday everything shifted.

At lunch I had an experience that I later described as a ‘blood sugar’ moment. I suddenly felt like I might feint and asked Sam to get me something with sugar while I slid off the chair (in the middle of Melissa’s in Constania nogal) and lay on the slate floor wondering what was going to happen next. The juice arrived and five minutes later I felt that I wasn’t going to feint after all, climbed back on my chair, seemingly normal.

If you keep reading you will soon begin to regard this word “normal” with some suspicion. I suspect you may come to realise, if you haven’t already, that normal has got very little to do with anything interesting and life-affirming.

Back at my office later that day I was seeing a client out and when I got back to my office I had another one of these ‘blood sugar’ moments only this time it was much scarier. I had visions of passing out and nobody being able to get to me so I leopard crawled to my office door which latches from the inside and made sure the latch was off. Then a scrambled for my cell phone and called Murray, my doctor, and with some urgency asked him to get to me as quick as he could. Like the angel he is he sprung into action.

When I began to feel like everything was going to be ‘normal’ I felt a bit foolish that I’d summoned Murray who was by this time weaving his way through rush-hour traffic to rescue me from who knows what. When the second biggest headache of my life hit me a few minutes later I got back on the phone to Murray pronto. He had only one thing to say, “I’ll be there now and I’ll bring some shots”. It was then that I knew he was an angel.

Everything happened simultaneously after that. Murray arrived, Sarah arrived, Sarah’s sister Liz arrived and Murray gave me the biggest Voltarin injection straight into my ass cheek. At first I thought the pain in my ass cheek was an attempt by Murray to distract me from the red hot pokers drilling through my eye and ear sockets. But when the I got home a few minutes later and the ‘migraine’ had receded into a more manageable painful headache I was so grateful.

I have to acknowledge that up to and until this painful Wednesday I had been more than a little laze’s faire about the whole sudden headache episode of the previous week. If Sarah had had her way we would have zipped off to Port Elizabeth for a CAT scan the day after the “First Headache”. I balked at what I thought was a complete over-reaction. I thought that if it was serious that I would have other symptoms. And in the absence of ‘other symptoms’ I felt it more than appropriate to just take it easy. As will be revealed later, I had in fact been having ‘other symptoms’ for about four weeks before the “First Headache”, but more about that later.

When I woke on Thursday morning with a nagging headache on the right side of my head I acknowledged that Wednesday qualified as ‘further developments’ and that I was now ready to be tested. I saw Murray for quick physical and then we headed over to the Christian Barnard Medi-Clinic in Cape Town city centre for a CAT Scan.

The radiologist who inspected my scan was surprised at me sitting down next to him as he viewed the plates and a bit put-out I’ll add. I realised very quickly why when I saw a very visible bit of something pushing my brain this way and that in the middle of my head. Not be drawn out at all he mentioned something about a ‘lesion’ and bleeding and that he would give Murray the run-down.

If you like me haven’t been hanging out in hospitals then you will also be wondering what on earth a ‘lesion’ might be. As it turns out it's not 100 well drilled Roman soldiers. It turns out that it’s doctor speak for a tumor or growth. But not necessarily in that order.

This was the first moment that the word ‘Tumor’ had popped into my head and no sooner had it landed I promptly put it down again. It has a real hot-potato like quality. It actually radiates a tangible energy. I imagine in the cold war days if you lived in the west and thought McCarthy was the best thing since automatic dishwashers then the word ‘Communist’ may have had a similar radioactive quality to it.

Murray booked me to see a highly regarded Neurosurgeon, Dr Grant White, and the plan was to see him with the CAT scan on Thursday and let him guide us from there. From ship to shore, from pilot to guide.