May 2012

Don’t you love it when the penny drops? When something finally clicks into place like a missing piece of the puzzle. Well, I had another one of those moments recently. Without me really noticing, something had obviously been ticking away quietly inside my brain and then at that precise moment, it clicked into place and became a conscious thought – one of life’s wonderful ‘aha’ moments. And finally I understood at a deeper level the many reasons why slowing down your metabolism can make chemo easier.

It all has to do with understanding how we heal. Understanding the importance of slowing down, breathing deeply and practising what Dr Herbert Benson calls the relaxation response. Our bodies have two modes if you like – one is fast – this is the stress mode and it helps to get us out of danger – and one is slower – this is the rest and digest mode where we do our healing. But in this day and age with all the time demands, and our fears and worries, it can be difficult to slow down, can’t it. Our bodies and minds are running continuously full steam ahead.

And it makes sense, doesn’t it. If we do our chemo while our bodies are running full pelt, the normal healthy cells are working much harder and faster and take up more of the chemo. But if we can slow things down as the research shows, our healthy cells will simply not absorb the same quantity of chemo. And to my way of thinking surely this would leave more chemo for the cancer cells to suck up. Seems like a good idea, doesn’t it. And there was something else I realised in that moment… that when our bodies are in rest and digest, our organs are working beautifully and it is these very organs we rely on to process the chemo toxins out of our body. Because, when we’re stressed many of our organs shut down. Not something we really want to happen when we’re relying on them to detoxify our bodies, is it? So by taking a leaf out of the tortoise’s book, it seems we could possibly get a bigger hit in exactly the right spot, and then get the chemo out quicker. I’d love to see some research done on this.

And there’s quite a few ways to slow things down, aren’t there. I’ve found research to show fasting before chemo brings your metabolism down which reduces side-effects. I checked this out when I was having chemo and my beautiful oncologist again was so supportive. Or having chemo when your body is at rest in line with your circadian rhythms has been successful too. Practising relaxation, and diaphragmatic breathing does wonders to retrain the way our bodies are working. And laughing, that full on belly laughing until your sides ache laugher, is pure magic in helping us switch over into healing mode.

I wonder, have you ever considered what the fear of chemo does to your metabolism? Your heart races, your palms sweat, your breathing becomes shallow. Because fear increases our metabolism, doesn’t it. And it’s not something we need more of. Many people don’t realise that the fear of chemo can actually exacerbate the very side-effects we seek so desperately to avoid…

The only thing we have to fear, is fear itself
– Franklin D Roosevelt

Sometimes I find the sadness creeps up on me. And it seems this can happen when I’m tired from a particularly gruelling week. A sadness, a grief for the ‘me’ I used to know. A lamentation for my old self, the one I knew for 40 years before the cancer. And the tears just flow with the sense of loss. In fact it seems my eyes just seem to stream sometimes even when I’m not actually crying. Perhaps this is a reflection of the depth of the sadness that can come with the losses we suffer through cancer.

And there are many losses, aren’t there. And I’m not just talking body parts. There’s the loss of strength physically and psychologically. My right arm that has always been my dominant arm is simply not the same as it use to be and I feel this profoundly. There’s the loss of sensation, the itches that can’t be scratched because the skin is numb, perhaps never to recover because the nerves were cut as they worked to save my life. And though my hair has grown back beautifully, it is thin and every morning I grieve the loss of my thick grey coiffed mane I use to love. Then there’s the loss of freedom in being tied down to the relentless medical appointments which continue years after the treatment is over. Other losses too, like the freedom to fly without the need for compression bandages, although I am delighted when I forget to wear them and my arm is none the worse for wear. There’s the loss of stamina, particularly noticeable when my six year old beats me in a running race. And perhaps one of the hardest to bear is the loss of sexuality, both physically and emotionally. Because as one woman said, it can be hard to feel sexy with only one breast, can’t it. Especially when we live in a society that idolises women’s curves. And to add insult to injury there’s the loss of libido as the oestrogen blockers affect my brain. But I’m working on that one and determined to win. There are the losses as relationships change and loved ones disappoint us as they too try to cope. And I haven’t even mentioned the financial loss, though I feel this loss pales into insignificance compared to the personal losses and the loss of identity.

Grief is not something we seem to do very well in this society, is it. We’re more the stiff upper lip type. But amongst the pink ribbon days, daffodil days, mother’s day walks and morning teas, perhaps we should have a day where we don our black arm bands and have a good grieve. Allow ourselves to feel the sadness that comes with this loss of self. And it’s important to mourn these losses, isn’t it. Allowing ourselves to feel the sadness helps us to move through and move on. Because the losses are real. And although the new ‘me’ that has arisen from the ashes is strong and beautiful, sometimes I don’t quite know how to relate to this new person. It’s like I have to get to know myself again and learn to love myself anew.

I remember reading years ago of a couple whose little boy was brain damaged in an accident. And they held a funeral for their little boy. And though they were criticised by many because he was still living, it was important for them to mourn the loss of the little boy they once new before they could welcome the ‘new’ little boy who had taken his place…

It was my second last port flush today! I can’t wait to get it taken out. It’s been a great help, but now I am more than ready to part company. In terms of preparing for chemo, getting the port-a-cath was one of the best decisions I could have made. My beautiful oncologist said it would be the first thing he would do if he ever needed chemo. And so it was an easy decision to make. I remember thinking, ‘if I’m actually going to do this chemo, I’m going to do it the best way I can to look after me’. So I jumped in boots and all. An extra operation, yes, (and I remember wishing they’d leave my other breast alone!), but it certainly saved me the stress of having to insert needles in small veins every cycle. And it protected my veins for the long haul too. Under no circumstances was I going to let my arm veins be destroyed, after all I figured they’d be useful for the many years to come. In my own way, getting a port was my declaration to the universe that I intend to be around for a long time. And it sent a very definite message to my subconscious that there would be life after cancer. Isn’t it interesting to stop and think about the messages we send ourselves.

So when it comes out, it will be like getting another part of myself back, allowing me to get on with the simple joy of living. And I feel my body anticipating the sigh of relief. I’ll be able to distance myself just that little bit more from the whole experience. And that’s part of the recovery, isn’t it. Just getting on with life as normal. Getting use to what ‘normal’ is again. At the moment the port’s a bit like an anchor. With a port, I’m physically tied to six-weekly visits to the chemo suite to get it flushed. Getting it out, will give me my freedom. And I’m so happy to be free.

For the same reason, I don’t really associate myself with the word ‘survivor’. I know many people feel comfortable using this term, but I don’t relate to it. Considering myself a ‘survivor’ seems to again anchor me to this period of my life, but psychologically this time. And I really don’t want to be anchored. I feel I’m so much more than just a survivor. After all, if I stopped to think about it, I’m a birth survivor, a child divorce survivor and a survivor of a single sex selective high school (you can tell I loved it!) too. And yes, I guess now, a cancer survivor in some people’s language. But they’re all just experiences, aren’t they. And it’s only when we resist them and let them define us that we give them power over us. I’d rather look back on it as just another part of my life. Another experience. And I can honestly say, an experience that has enriched my life in so many ways. Everything we experience in life makes us who we are. And it can be a magnificent kaleidoscope when we give ourselves permission to see it that way…

A multi-colored view of a kaleidoscope

It has often been suggested that the diagnosis of a life-threatening condition can be a little like pointing the bone in Aboriginal culture. Where death results with relative speed for the person who has been boned. And it is a little like being boned, isn’t it?. When the shock of diagnosis can cause so many to give up.

I saw my own surgeon resign himself to a speedy exit. ‘My stats aren’t good’ he said about his own diagnosis of cancer. I don’t believe in stats (unless they’re in my favour). I think we can do much to create our own stats. And in a matter of only 4 weeks my strong, six foot surgeon went from being my doctor to becoming a frail and ill man needing support of his own. I was shocked by the speed of his transformation. In his book Timeless Healing, Dr Herbert Benson describes it like this: ‘Overnight, patients diagnosed with chronic medical problems or illnesses began to think of themselves as ‘sick’, and the effect that label had on their psyches and their physical heath was substantial’.

I’ve heard it said that there are some doctors who believe they have killed more people through diagnosis than the actual disease. And, as helpful as it is to diagnose something so we can get appropriate treatment, I often wonder how many lives are shortened by the power in these words? I’m not advocating we stick our heads in the sand, but it’s so important to remember we always have a choice in how we think of ourselves, isn’t it?. We can allow other people to label us, or we can choose to see ourselves differently.

Yesterday at a workshop, a beautiful young woman shared her father’s story when she heard of the work I was doing. A beautiful story of hope and the power of the human spirit. You see, many years ago, this man was misdiagnosed and treated for haemorroids for an extended period of time. So by the time he received the diagnosis of cancer, he was given only 3 months to live.

But he went on to enjoy another 7 years of life. And enjoy them he did!

When the doctors were pessimistic he allowed their pessimism to wash over him. After all, it was their pessimism, not his. And so he found new doctors that gave him hope. He travelled some distance to find them, doctors trialling experimental techniques, and he embraced them boots and all. During this time he travelled the world 5-6 times and enjoyed his family. Chemo was an experience they chose to share, his children accompanying him to the chemo suite and making the most of the opportunity just to be together. In the end, his daughter tells me, he let go not when the doctors decided, but when the time was of his making.

Isn’t it empowering when we can move through the shock of diagnosis and take the responsibility for our lives into our own hands. When we take an active part in our own self care…

I wonder, have you ever had that feeling of being so happy, you could cry? As I sit here on the tarmac tonight, I am filled with a rainbow of emotions. And it is overwhelming in a good way. The most intense peace, happiness, joy and gratitude. Gratitude that I live in a time and place where I have choices. Gratitude for the wonders of flight that have enabled me to travel almost 2,500 kilometres here and back in one day to see a doctor doing some very special work. Gratitude for the people who go out on a limb pushing the frontiers of possibility. Gratitude for my family who have helped make this trip possible. And gratitude for that part of myself that never gives up.

Today I found another beautiful doctor. The second I entered his office, I knew I was in the right place. Warm, friendly staff who were pleased to see me and welcomed me by name, as a person, not a patient. And as I turned, I saw it, a Tree of Life painting on his wall. This symbol means so much to me. Steve and I once ran a practice where we actually painted the Tree of Life on our office wall. To me, it is a symbol of wholeness, of life, hope and beauty. And so I knew it was a sign just for me that everything would be okay. He introduced himself simply by his first name and explained the wonders of this new stem cell technology. And what wonder it is. My own tissue, to recreate what is missing without damaging me further. It is difficult to explain the feeling of parts missing, isn’t it?. And now the chance to feel whole again. I felt the tears as the emotions came. I can’t wait to get started.

First I’ll need an expander to create the space for a new breast. It’s quite brilliant really. No different to how your skin expands during pregnancy. But when I first enquired about reconstruction along traditional routes, I was told this was not a good path for me because of the radiation. But with this technology the stem cells actually heal the tissue as a part of the deal! It certainly pays to get a second opinion, doesn’t it. To look outside the sqaure. And then six weeks later there will be the fat transfer. Goodbye tummy, hips and thighs. I believe the benefits of liposuction are an added bonus with no scars! And to top it off, this surgeon recommends herbs and vitamins for healing. Again, he speaks my language!

Every woman who’s had breast cancer should know they have this choice, shouldn’t they.

Tonight as I travel home to my family and the comfort of my own bed, I want to leave you with the surprise I discovered in the hospital bathroom, just down the corridor. One more sign that I am in good hands. I was quite blown away. If you can, picture this. A suite of doctor’s offices, on the top floor of a hospital building. A regular office style bathroom, 6 cubicles and there in between the paper towel dispensers I saw this plaque:

Daily Affirmation – The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts, it is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day . We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our attitudes.

If only more hospitals were designed to feed our minds as a part of our healing…

It drives me crazy when people say something is not scientific as if it’s a reason not to try something. When the admiralty began handing out citrus to sailors to prevent scurvy, they didn’t know the science of why it worked, only that it did. And there are many things in life we are yet to understand, aren’t there?. I look at it this way – science is just the limit of our understanding about how things work, not whether or not they do. And our understanding is limited, isn’t it?. That’s what makes this world such an interesting place. How boring it would be if we knew it all.

That aside, I love research because it opens up the possibility for how things could be. I came across a mouse study recently that involved two groups of transgenic mice. That’s just a fancy name for mice that have been genetically altered so they carry genes for particular traits or that make us more susceptible to certain diseases. Because some of the mice go on to express the genes, they help scientists to study what happens in different disease processes when you change the environment they are raised in, as well as the effect of different treatments.

So back to these transgenic mice. Half of the group were socially isolated from weaning while the other group were kept together. And this is the important bit. The socially isolated mice went on to express more of the genes associated with breast cancer and developed more breast cancer tumours than the mice that were kept together! And no surprise, blood test results showed the isolated mice were more stressed.

So what does this tell us? The scientific answer is that ‘an adverse social environment is associated with altered mammary gland gene expression and tumor growth’. In plain English… it would seem that our emotional health is a HUGELY important factor in the development of breast cancer. It overturns the mindset that genes alone determine our health, doesn’t it?. So even if we have the genes that predispose us to the disease, our social environment, our connectedness if you like, plays an enormous role in whether we will actually develop the disease.

It’s a ray of hope isn’t it?. Especially when you realise we can choose to heal our emotions. Because many people don’t realise that genes are only a predisposition for a disease, and not a definite sentence…

Williams, J.B., Pang, D., Delgado, B., Kocherginsky, M., Tretiakova, M., Krausz, T., Pan, D., He, J., McClintock, M.K. & Conzen, S.D. (2009). A Model of Gene-Environment Interaction Reveals Altered Mammary Gland Gene Expression and Increased Tumor Growth following Social Isolation. Cancer Prevention Research, 2009; 2: 850