Saturday, May 30, 2009

Ching, Chong, Cha!

Cold beats cancer, cancer beats fear of unknown, fear of unknown beats cold

30 May 2009
The Atlantic to left of me, the 12 Apostles to my right, here I am…

I’ve completed the first two weeks of my six weeks of combined radiation and chemo therapy. If it wasn’t for this hectic sinus cold I’m battling I would say that I feel just fine. Hang on. What I meant to say is that it’s taken a particularly nasty sinus cold for me to get the message.

Everybody around me has been encouraging me and giving me permission to just rest as much as I need to. Have I been listening? No.

I have been going here, there and everywhere. Popping into the office, seeing one or more different kinds of therapists or healers a week, if not a day! Busy, busy, busy like a bee. But I’m not a bee. (Confusing metaphor in South Africa, I know.) Perhaps it’s the fact that I recovered so incredibly well from the surgery and added to that the fact that the Radiation and Chemo treatments I’m on are so very mild. More about that later.

What I have realised in these three days in bed is that the dis-ease I have to heal myself from is not an out-of-control growth in my brain but an out-of-control compulsion to be busy all the time.


Writing that down feels like too much, too soon, too fast.

I could write pages about this. It falls under the heading, why do you think you got this cancer? I have been thinking about that since day one and since day one I’ve known that there was a part of my brain that could get onto an action or thought or plan and ride it so hard and so far and so fast that eventually it sounded like an air-raid siren in my head. So intense and without pause I would become.

To people on the outside this must have looked like many things. Sometimes it would seem like a kind of stubbornness, other times like a great ability to focus. I often experienced it as a way to disconnect from the world and what was going on around me. Excessive focus as a way to avoid life.

Just this week I was writing in my diary and I found myself worrying about arriving at the end of my six weeks of Radiation Therapy and having wasted my time. It was as startling for me to write it down as it was to wonder what it was that I would have wasted. This was before the Sinus Cold hit me so I hadn’t had the time for this to sink in but already I had a sense. This is what I wrote:

Time would be wasted if I emerge on the other end with nothing to show for it.

As I think about this now I’m less interested in the neurotic fear of missing the boat, of not delivering and I’m much more interested in what this incessant drive to be busy, to be doing something about everything all the time, is really about. What am I avoiding in my life by always being busy?

If I let this journey keep me at bay, if I allow my body to rest for the next four weeks perhaps I’ll find out.

When I found out about the tumour some six weeks ago one of my first reactions was excitement. I know this will seem foreign and perhaps even abhorrent to some, but for me the prospect of going on such a huge journey immediately spoke of opportunity to discover new territory, new places, new sensations and ultimately treasure.

So now’s the time to approach the cave one more time. Dragon’s are magical creatures. One moment they are spewing fire and fighting tooth and claw but they can be sly and crafty when they want to be. Suddenly I have to face a Dragon that seems to protect not a shiny golden hoard but a cavernous emptiness. All I can see behind the Dragon is a big dark space in which I have to lose myself if I ‘m going to defeat him.

Navigating the 3 C's: Cancer, Causality & Conspiracy

Monday 18 May
My Desk, the Atlantic on the left of me

Before I’d left the hospital I had first a visit from my neurosurgeon, Dr White, and then a day or two later from my Oncologist, Dr Eedes, to discuss first the histology and then the proposed treatment. The histology showed what Dr White had expected, a malignant tumour which, due to it’s position, he was able to remove in it’s entirety. However the tumour was like a beehive, he explained. You can see the beehive and remove it, but you don’t know how many bees are outside of the hive at any given time. These ‘bees’ of course being other cancerous cells in the surrounding tissues which are doing the cancer thing, namely reproducing, making more cancer cells. So the focus Dr White explained was to kill any remaining cancer cells. Enter Dr Eedes.

Dr Eedes, one of the most highly regarded Oncologists in the Western Cape, explained that for this particular type of brain cancer there was a ‘best practice’ used worldwide which involved six weeks of radiation combined with an oral chemo drug. He explained and I’ve also found out since that this particular form of chemo is on the milder side of possible chemo treatments, being oral and in slightly lighter doses than what other types of cancer often warrant.

So that was that sorted then?

It took me almost a week at home before I dared to go online in search of ‘more info’. There was a part of me that didn’t want to get too familiar with how the doctors saw me or my condition. I can appreciate how useful the labels are for them in helping them navigate what must be a very difficult landscape. I say ‘difficult’ because I did start to research and find out more about cancer in general and brain cancer in particular. The more I read I started to wonder how a person who becomes an Oncologist to ‘heal’ people with cancer must function with such a limited tool set (Radiation & Chemo) which has a very chequered history and jury’s still out on whether they actual heal.

Why was I so reluctant to engage with the clinical in’s and out’s of my condition? On the one hand I was weary and cautious not to be drawn into a set of labels that were just that, useful to describe something, but not the thing itself. On the other hand I really did not want to hear what the statistics were on my kind of cancer and the survival rates. Would you? But like all things you resist, viola! A friend with the best intentions sends me a link to a site that he thinks has useful info and within seconds of landing there I see a graph with survival rates for people with my kind of brain cancer. Reminds me of a Jedi mind trick: “What I don’t want you to think about is a jedi knight wearing a tutu”. Too late, right. So what did that change, if anything?

I now had a sense of why some people were so alarmed at my news. When I checked in with myself I also realised that these graphs were only one side of a much bigger story and so I started to read and research. Little did I know that I was about to uncover one of the biggest unanswered questions of our modern age.

The easy questions seem to be, in no particular order:
  • When will the aliens give us 3D TV technology?
  • Is there a God?
  • Who shot JFK?
Much harder I discovered was:
  • What causes cancer?
One of the first distinctions I discovered was that the combination of Surgery, radiation and chemo therapy does not technically heal the body of cancer as much as it removes the manifestation of cancer, namely the tumour. To heal the body of cancer something else often needs to happen, something that addresses the underlying cause, what gave rise to the cancer in the first place. But nobody can agree on what causes cancer! So where does that leave us, where does that leave me?

After all the reading it left me feeling between a rock and a very hard place. On the one hand I had great doctors prescribing six weeks of radiation and chemo therapy and on the other I had an avalanche of “alternative therapies” all vying for pole position. Not only did the alternative therapies demand their moment in the sun, their advocates also spent a huge amount of energy painting the “Big 3” (Surgery, Radiation & Chemo) as an evil triumvirate cooked up by a cabal comprised of the American Food and Drug Administration (FDA) and “Big Pharma”, intent on keeping their monopoly on ‘approved’ cancer treatments that they can profit on and squashing any treatment that they couldn’t own even if it did show promise or even heal people.

So how did I navigate this?

Intellectually I couldn’t resolve this. It was a minefield with both sides taking great pains to paint the other side negatively. What really set my alarm bells ringing was noticing how much energy going into making it a black and white issue. So I took the 3rd way. I felt my way through it is what I did.

I remember going to the Vincent Pallotti Oncology ward to have my mask made a week before my therapy started. I met the team that would treat me for the six weeks in the Radiography department as well as the team that would handle the chemotherapy. These are some of the best people I’ve met in a long time. I came away from that day feeling that I could go far with these people. I could feel that they cared and that they were committed to me healing. That decided it for me. I exhaled and knew that no ill could befall me in that place.

Ironically the harder part of the journey now is to navigate the myriad of alternative therapies. It seems there are enough alternative therapies to suit every kind of personality, eye colour and taste.

Monday, May 18, 2009

The Missing Piece

Sunday 17 May 2009
My Desk, listening to the sounds of the Atlantic

I arrived home exactly one week after having the tumour removed by miraculous brain surgery. It was a strange new reality that met me around every corner. I was and still am overwhelmed by an overwhelming feeling of feeling.

I can’t make sense of it, don’t want to make sense of it. It’s enough to just wake up in the morning and instead of thinking, ‘what will I do with this day, how will I take it and shape it and make it interesting to me and do something with it?’ I don’t. Most mornings I wake up and I notice a feeling or sensation in my body. Usually it’s in the middle of my chest and it sets the tone for what unfolds. But more than framing the day, this feeling has become the new language of my waking time in ways that I can’t really express in words.

I have wondered if, by divine intervention, the neurosurgeon removed that part of my brain which has been holding the reigns of my waking hours for the last 38 years with such cunning control allowing me only rare glimpses of what it might be like to feel.

So on the one hand I have been swimming in an ocean of feeling and discovering a patience and receptivity that has me speechless, (hence the lack of blogging!). But on the other hand I have been watching the approaching deadline of my Radiation and Chemo therapy approaching which has been pulling me out of the ocean like a coast-guard helicopter intent on rescuing me when all I want is to carry on swimming in the warm water.

Which brings me to tonight. Tomorrow morning I begin Radiation and Chemo Therapy. It will work something like this: I will receive about 10min of very focused X-rays to an area of my brain designed to target any remaining cancerous cells that lay outside of the tumour that was removed. I’ll be going to Vincent Pallotti hospital every weekday for the duration of the 6 weeks. The Chemo Therapy will be a pill or pills that I’ll swallow every day for the next 6 weeks. That will be followed by a 3 week holiday and then an MRI scan to see how I've responded. I'll then start a 6 month Chemo treatment which will involve 5 days of a higher dose Chemo per month for the 6 months and then another scan and so on.

How do I feel? On Friday I noticed that I'd been picked up by the coast guard. I felt a real discomfort and sense that I did not want to be where I was for the first time since the wave broke. On Saturday the feeling intensified and I acknowledged that perhaps it was time to admit that the prospect of Radiation and Chemo was enough to make anybody feel a bit bang. And now as I sit here, on the eve of the next big phase of this journey, I feel ready. If I wanted a walk in the park I'd be in the park.

What about the Alternative Therapies? It’s been a bit of climb to get to this point. More about that tomorrow.

Sunday, May 17, 2009

How do I know which part of my brain is missing?

I got a little behind, so here's some 'back-story'

Thursday 30 April 2009
Room F5 Cape Medi Clinic

From here I can see all the way down to the see and beyond.

A thought just occurred to me… How would I ever know that the Neurosurgeon did not remove an essential part of my brain? How would I know? What if the piece that I would miss, by virtue of being missing, will never make it’s absence felt by just not being around?

I had some visitors today and I wondered if they were being briefed down the corridor on the part of my brain that was missing so that they didn’t accidentally mentioned or alert me to it.

Funny. Funny in a brain surgery joking kind of way.

The bottom line according to my Neurosurgeon is that the part of my brain that I grew the tumour in, the front right temporal lobe, is one of the least critical parts of the brain and conversely the most ‘up for it’ when it comes to taking bits out.
Or put another way, he has removed up to 9cm of this part of the brain with no notable side effects. This is one of the many miracles of what is happening to me. I grow a tumour in the part of my brain where there is little if anything preventing a surgeon from removing it in it’s entirety.

But I’m writing this myself and I’m also the one with 5cm less front right temporal brain so who are you going to believe?

I mean I know there’s a hole there now!

Tomorrow is a week since the operation and I’m probably going to be discharged, I’m going home. Today is the first day since the operation that I feel like I can survive myself. If I woke up tomorrow and the Swine Flu had killed all the ugly people in the world and Cape Town was overrun by six foot blonde’s ripping all the copper out of the city to redo their bathrooms I think I’d actually be able to fight my way to the harbour and find a way out of here.