This is much bigger than me.

After three years of clean scans my August MRI of 2012 picked up the beginnings of a regrowth. By October last year I was back on Chemo and by April this year the growth has shrunk significantly. Emboldened by the response of the regrowth to the Chemo and Chinese medicine combo as well as yearning to find another way to shrink the tumour I chose to take a break from the Chemo for some weeks to see if only the chinese medicine could make some headway. 

A scan on the 28th of June, 10 days ago, revealed that in this period the tumour had grown again. This has come as a big shock and yet it was always a possibility. 

I have restarted my Chemo regimen as of last week. The Tumour had grown somewhat and was causing some discomfort, headaches (which I assumed was a bad sinus cold). 

I am also back on steroids to ease the swelling and side effects of having a bit of 'mass' in my head.

So for now, back on the chemo and surrender.

I will do three rounds of chemo and then scan in September.

The hardest part of now is to surrender to something I cannot control even though I've been so 'at it' for these last few years. I feel humbled and devastated in equal measures.

Return to the Scene of the Crime

Saturday 18 July 2009
The Quenera River to the right of me, Bonza bay

Very soon after I came out of surgery and was diagnosed I was told that at the end of my radiation and chemotherapy I would have three weeks of ‘holiday’. It was then that I had the idea to book myself into the St Frances Health Hydro (hyperlink) to recover from whatever the effects of the radiation and chemo might be. At the time it was just a notion. I had heard from different people that it was a powerful place of healing and in particular I knew two people who had made radical shifts in their lives as a result of having spent time there and being treated in particular by the founder, Ms Cowley. As I neared the end of my treatment I noticed that my holiday coincided exactly with the kids school holiday. Perfect.

So a week after my radiation ended on the 26th of June I booked myself into the St Frances Health Hydro under the healing hands and eyes of Ms Cowley.

Mention St Frances to anybody who’s been there or heard about it and they roll their eyes and say something about the food. I had heard about the ‘food’ so many times that I called Ms Cowley a week before I checked in to confirm that I would be able to eat hot meals in accordance with the principles of Chinese Medicine that I’m currently being treated with. She assured me that there would be hot options for me and that decided it.

The drive up to the Eastern Cape was incredible. There was the fiercest wind blowing the whole way from the Cape all the way up the garden route. We passed fallen trees often. The whole way it blew from behind. When we entered the Eastern Cape I felt myself expanding, like water being poured out on the ground.

I stayed in Grahamstown for two nights to ‘acclimatise’ and booked in on the Saturday afternoon. On the one hand I could run through a list of treatments, consultations and detail the meals we received and all the food we didn’t eat and the food we spoke about at dinner that we drove ourselves a little mad with. But words can’t capture the finesse of the experience. I’ve never had such a tangible experience of how powerfully the food I eat affects me. By the time I left a week later I felt so finely balanced and tuned dare I say. The full impact of this incredible ‘attunement’ only hit me with full force a few days after I checked out when I ate some meat and could literally feel myself stumble and, dare I say, fall about a bit.

Detox diets and reduced calorie intake aside what draws a lot of people to St Frances is the opportunity to work with Ms Cowley, the founder and heart of the centre. She is renowned for her healing arts and powerful intuitive process. Part of me expected the work I did with her to be about the tumour and how or why I had manifested it. No such luck. It seems that there was something far more pressing to release and balance.

Looking back now the reason I felt compelled to return to the ‘scene of the crime’, the Eastern Cape, 10km from where I had the first headache was to unearth and reconnect with something I lost a long, long time ago.

Ever since I discovered the simplicity of living 'in the now' in my mid twenties, I’ve been very happy to let past be just that, done and dusted. I’ve also been more than happy to let the future remain a mystery. So much so that I drive Sarah mad sometimes with my resistance to get involved in any kind of long distance future gazing or planning as she likes to call it. I know the communists liked their 5 year plans (as did Hoover in the States) but I have found just the sound of a 5 year plan far too grown up and potentially mind numbing. This is only the tip of the ice-berg. When it comes down to it I’ve resisted having a picture for my life for a long time.
If you want to get my pulse racing and beads of sweat on my upper lip put me in a room with a facilitator and have them write in big letters on a white board “How to Define a Vision for Your Life” or something suchlike. I’ve been there and I’m always left with this overwhelming sense of, “how can I know what I want tomorrow or who I’m going to be or what I’m going to want!”. Invariably, the times I’ve found myself in those situations I become uncharacteristically quiet and un-participatory. The only progress I’ve managed was in a session last year where I realised that having a vision for your life could be as simple as being able to just see what’s going on right here, right now.
Back to the now.
Funny that.

So imagine my surprise when I discover at St Frances, on hot calorie restricted diet, that within me lies a powerful electrifying and exhilarating vision to transform the world around me through film. A vision that I can feel in my body, in my bones and especially on my skin. Hold onto your hats.

School's Out!

25 June 2009

My desk, dark sea to the left of me, sleeping Sarah to the right

Tomorrow is my last day of Radiation and Chemotherapy. I’ve been feeling a rising sense of excitement since Monday. On the one hand I’m expecting all the side effects to get worse and worse and on the other hand I’m too excited to either feel it or notice them.

It also happens to be the end of the school term, school holidays start tomorrow. How perfect. I'm on holiday and so are my kids!

Yesterday as I lay on the treatment bed waiting for the Radiation to start I thought to myself, “I wonder if I’ll ever do this again?” I then decided “no” and savoured every moment of it as if it was my last time ever to get ‘radiated’ . I did the same today and tomorrow I’m going to eat up every second of it.

When I look back at the weeks before I began this treatment I remember how conflicted I was. I had come across the criticisms of Radiation and Chemo and was considering not going through with it. It was a very difficult crossroads for me. I could appreciate and understand why people saw Radiation and Chemotherapy as poison and harmful and not geared in any way towards healing. In fact the one description that resonated with me was the idea that surgery, radiation and chemo did not heal the body from the cancer, it merely treated the tumour. Again the idea that allopathic medicine is myopic in it’s focus on the symptom and not the cause. So what led me to go through with it?

I remember going to the hospital to have my mask fitted a week before the treatment was to commence and meeting the Radiology Team who were going to treat me. They were and are an incredible group of people. All women as it turns out. When we drove away after the mask fitting it was suddenly a non-issue for me. I would do the radiation and chemo. It just felt like the right place to be and it has been.

My dear friend Daron came along one day and shot a whole sequence of photos of the radiation process. You can view them on my flickr photo-stream.

Hooray!

Betwixt and Between

22 June 09

my desk, still dark outside but I can hear the waves

Last night was the longest night of the year. From today the sun claws it’s way back into the sky. Here begins the last week of my radiation and chemotherapy. Week six of six. I’m feeling a mixed bag today and have for the last week or so. What next?

I’ve noticed in myself that knowing what is going to happen next is more comforting that what that ‘next’ actually is.

My treatment from an oncological point of view has only just begun. After this week’s treatment I have a three week ‘holiday’ to give my body time to recover from the side-effects of the radiation and chemotherapy. After the holiday I am scheduled to start a six month chemotherapy regimen which will be five days of high dose (oral) chemo for one week every week. Sounds do-able.

While everybody has a picture of ‘chemo’ my journey has not been that. I had some nausea in the beginning and days here and there that were tough. But all in all it’s been very do-able. The side effects of the radiation have slowly been accumulating and are now very noticeable both to others and in the way I feel. My hair has begun to fall out and I have a radiation burn on the side of my face, plus my right ear is taking strain. It feels blocked most of the time due to excessive oils which are being generated in reaction to the heat and irritation from the radiation.

I was warned that there could be some ‘short term’ memory loss.

What was I going to say again?

I noticed it at first last weekend at Kath’s wedding. I gave somebody a camera to hang onto for a few minutes while I did something else. When I returned half an hour later I had no idea who I’d given it to. I knew I’d given the camera to somebody but that’s as far as I could go. As much as I searched my records I couldn’t switch on the light, it was like the library was dark and I had no idea where the shelf was. The next morning while I was meditating the lost memory fell out of my head. So it was there all along! Strange, but stranger things have happened.

The biggest side effect of the radiation is that it’s shifted my energy radically. Unless I’m with people I feel very cut-off and dislocated. On the one hand I feel like I should be out there engaging and on the other hand I don’t feel like doing anything. Betwixt and between.

As hard as it was in the beginning to reconcile myself with the radiation and chemotherapy I now find myself at a cross-roads again. Where to from here? The variety of treatments and different paths to healing are still arrayed before me, like a fan of possibilities, radiating outwards.

I’ve booked myself into the St Francis Health Hydro for a week in July to give myself a chance to recover what needs recovering from the radition/chemo and also to get clear on what’s next.

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.

Phew.

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.

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.

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.