Making Space

Carrying the load at the airport.

Carrying the load at the airport.

We just returned from an amazing ten days which included supporting Mr Cool in his quest towards future Kona Ironman Triathlon glory, and holidaying with awesome family.

Watching the elation of super fit people achieving their dreams when they have worked tirelessly over the long term to achieve such things is life changing. These athletes are highly successful people; highly disciplined, highly motivated and high achieving in most aspects of their lives. I couldn’t help but be impressed as I gazed around at the 1600 people getting into their wetsuits.

Ironman Triathlon competitors at the start of their long pilgrimage.

Ironman Triathlon competitors at the start of their long pilgrimage.

It took me 37 years to understand the benefits of health, fitness and dreaming big. And although Mr Cool has completed ten of these events, I think I only just am getting it. You cannot be witness to these people and not be motivated to make positive changes to your life after watching the dedication, commitment and achievements of Ironman competitors. They juggle their family and full time careers with their training to be the best version of themselves possible. On the surface it is an individualistic sport, but there is so much support from family to get competitors to the start line. It really is a whole team event.

Waiting for my Mr Cool to enter the finish chute as the clock was ticking towards 11 hours, a woman in the crowd noticed my head scarf and came and stood with me and my children against the crowded finish chute fence. Through all the festival noise and dance music of an Ironman finish area and in the twilight of dusk, she asked me if we were waiting for someone special to finish. I was very emotional. It had been an enormous four months and Mr Cool had done his best to train for such a gruelling event that involved swimming 3.8kms, riding 180kms and then running a marathon of 42.2kms. He could have easily dropped the goal of completing another Ironman when I was diagnosed but I did not want him to. It was important to me that he continued to do what makes him happy and this sport is what he truly loves. It was important for us as a family to keep working towards his goal of one day getting to the world championships at Kona Hawaii. My breast cancer, our breast cancer has made this even more important. His preparation was less than ideal, often missing his long rides and runs because we were in transit to Melbourne for surgical consults and waiting in waiting rooms for appointments. But he made it! We all made it! And I even managed to run a 5km fun run the day before.

This woman in the crowd then spontaneously tells me that she hangs out with a breast cancer survivor dragon boat team. This was four minutes before Mr Cool came down the chute and I nearly missed him because I was the recipient of a one way conversation with a stranger about breast cancer. I am nearly half way through chemotherapy. I am quite bald now having lost most of my hair. Even with hat or head scarf, I am holding up the cancer sign nice and high. It can be seen from miles down the road like a take away food joint billboard on the highway. This would explain why total strangers approach me from crowds to connect with me and share their experience.

Coastal adventures

Coastal adventures

Post Ironman, on our family holiday, I was privy to watching the joy of our young children playing on the beach and experiencing new adventures. They largely experience their world without fear. I saw the elation in their faces running from waves lapping at their heals and jumping the lines of whitewash as they rolled towards them. I saw them drawing in the sand with driftwood and climbing the dunes in search of the next view. They also climbed trees and endlessly chased each other. They spent precious time with their cousins, aunties and uncles.

These are the experiences that matter.

But to be honest, unfortunately my level of joy was dampened by this fear of local recurrence of or metastasis of cancer. I am sure this is a common aspect for many on the cancer journey. Cancer lays waiting. It is insidious like that.

All of the fears I had in recent months since my cancer diagnosis about whether I would be able to travel interstate while undergoing chemotherapy, whether I would pick up some awful bacteria from being in public places like airports and public toilets and restaurants, whether I needed a lymphodema preventative sleeve while flying, if I’d even be well enough to see hubby cross the finish line of his tenth Ironman, all of this fear and the worry dissipated. I am doing fine and am able to live as I always have, (albeit without hair and with a new breast). This ‘new normal’ is almost ‘normal’ in the moment. Just enjoy the holiday and forget about cancer!

Then, two days before we flew home I developed a simple head cold. You know the kind; sore tonsils, congested sinuses, tired, mild cough, runny nose, achy joints. And the spiral of fear started all over again. This time, worry about whether I would develop a fever. Whether my white blood cells had climbed high enough since the previous dose of chemo to combat the virus that was taking hold. Might I be hospitalised with neutropenia and miss our flight home? And yet again I was totally fine. The worry was all in vain. My body fought the virus off.

Then, just one day before we flew home I rolled over in bed while holding our two year old and pulled a muscle or cartilage between my ribs. It hurt to laugh, cough, sneeze, blow my nose, breathe deeply and bend over. The cycle of worry started all over again. Every twang of pain struck me with the deepest fear. Have I fractured a rib? Is this bone mets in my rib. Why is the rib pain coming from right under where my tumour was removed? How close to my chest wall did my surgeon say that damn tumour was? How fast could I move from stage IIB to stage IV breast cancer? I have grade three fast growing cancer with nodal and vascular involvement. I am screwed! Alarm bells a-ring-a-ding-ding!

Of course I will mention this rib pain symptom to my oncologist in the coming days. But today when I woke the pain was pretty much gone. In cancer land there is a rule, to report to the oncologist any symptom that persists for a few weeks. This helps limit endless reporting of every little tingle and twang that goes on in our bodies and reduces unnecessary tests. I’m breaking the rule on this occasion.

The hardest part is not having any clue of what my future holds. It’s easy to reason that none of us have any clue about our futures. But when faced with the unpredictability of breast cancer it’s like the seeds of a resilient weed in your body have been planted or blown in by the wind. Sometimes the landscape conditions aren’t favourable and the weed doesn’t grow or it stays localised. Sometimes the weed takes off and covers the entire landscape infiltrating every spare piece of earth and driving it’s roots deeper into the soils, crowding out the native plants that are necessary to keep the ecosystem healthy. There is no rhyme nor reason to who loses control of the weeds and who doesn’t. Genetics must be at play. We just don’t know which ones yet.

This fear of metastases or progressing to stage IV disease will never leave me. So this fear needs to be managed, restricted and utilised in a proactive way so that I’m not crippled by it.

It is amazing to know that there are many woman wordwide living productive lives with metastatic or stage IV breast cancer who support each other emotionally through forums, blogs and closed social media groups. These women have the most to teach us. They support themselves as it seems that most research and funding is directed at raising awareness for breast cancer and early detection practices.  But what about finding the cause of breast cancer?  And what about researching metastatic disease?  What currently happens to the hundreds of thousands who progress to stage IV disease and live with it for many years?  Imagine being told you are now terminal?

For me now, none of this worry about the effects of cancer treatment or the potential progression of cancer does any good or has any bearing on the outcome or my future. I don’t have control over where my journey is headed. All the positive thinking in the world and the cleanest diet imaginable has no bearing on who survives and who doesn’t. Who lives a long time and who doesn’t. And to think so is naive and is a disservice to the hundreds of thousand of people that have been taken prematurely by breast cancer before. Oncologists don’t know why the disease progresses in some and not others. They don’t know why the disease is more aggressive in younger women versus post menopausal women.

Once you are accepting of this, you can move forward with living. And that is pretty much all of us should do right? Live our best lives.

So today, I took my mild head cold and my now painless rib and I slowly but joyfully ran the 8km Mothers Day Classic Fun Run to raise money for breast cancer research. People generously donated their money to the cause. I was so energised from this that after it, I then went and walked the 4km event with my girlfriends and my five year old son. And I was kind of disappointed that he never even wanted a piggy back from me as he usually would. But I am just so grateful that today, on this day, I am here to see this kid growing up.

I just have to keep making the space for dreams and to ensure that the rays of joy are allowed to shine through.


Running through Chemo

Today I showed up for my running club’s second run for the cross country season. A gently undulating 7.6kms through bush trails and roads. A year ago, I weighed 18kgs more than I do now and I had just committed to starting a regular exercise regime of walking daily after many years of inactivity. Within three weeks I was jogging and walking from tree to tree, or the next letterbox, or that light pole up ahead. A few more weeks and I didn’t have to stop to walk anymore. This weight loss may have helped me discover the cancer or it may not have. I will never know.

I have run over 1500kms in that time and have been diagnosed with breast cancer. I’ve since had two surgeries and am one third of the way through my FEC -D chemotherapy regime that will finish mid July. The year ahead also has a course of radiotherapy that will last five weeks and there will be more surgeries back in the big smoke with the surgeon and then I will start on my five year course of hormone therapy. But today, I feel totally comfortable with a 7.6km bush run. I have a lot to be thankful for. I didn’t run this course a year ago, because back then walking 4kms round the streets was a real struggle. But my ‘future self’ kept whispering to me to persist with it.

Running while on chemo is a bit like having all of your reserve tank taken away. It’s akin to dragging a tyre or carrying extra weight on your body. I am fit and comfortable, I am just slower than normal and I can’t accelerate or pick up the pace as I used to be able to. I have less red blood cells to carry oxygen, I feel this on the hills. And there are the effects of the drugs on my heart. The most surprising side effect is that today many actually gain weight while undergoing chemotherapy for breast cancer. This is due to the combination of anti-nausea drugs that allow people to continue to eat, the use of steroids in the anti-nausea regime, and the general lack of exercise due to being ill or recovering from treatment. (Shhhh, don’t tell the running handicapper about the steroids. I might be DQ’d.)

I’m a little slower than last year, but that’s okay. I am doing it and the benefits of continuing to run and walk where possible through chemotherapy far outweigh the risks. There has been a fair amount of research on the topic of exercise and breast cancer. Exercise has been shown to improve quality of life, improve self-esteem, reduce fatigue and reduce rates of recurrence. There will likely be times when a walk will feel like a marathon to me and other times when running feels fairly normal. The trick for me is to make sure I do enough to be of benefit to me through treatment, but not too much.

Today, I’m caught between feeling like the old me and feeling like a person being treated for cancer. Now that the head hair is gone, my appearance is putting me into the second box in the eyes of everyone I meet. It amazes me how a bald head screams cancer. But I feel absolutely fine and I don’t need to run the shorter courses which has been suggested, and I am taking it easy and listening to my body.

What frightens me most is the possibility that some people think I might die from this disease. You can feel it in their approach or glances. There is the constant reminder that breast cancer is serious and the threat of it is never far from my mind. Fortunately on many of the days in each of my three weekly chemo cycles the person with cancer doesn’t exist. Except for the bald head, I mostly feel like the old me. So I’m not going to let the bald head define my experience and I’m not going to lay on the couch and play the part.

There is a touch of sadness as I hear about all the goals other runners have for their year ahead. I had planned a great year of half marathons and a 70.3 Half Ironman Triathlon at the end of 2013. But all of that is just on hold. It is still inspiring to me to hear and read about all of the great things people are achieving.

Today whilst running, the sun was warm like that first spring day; surprising as we rapidly move towards winter. There was the joy of movement and breathing and there were interesting and varied textures to run over underfoot. There were different smells in the forest and hot dusty sections. The breeze swirling around my exposed ears felt wonderful. The sun on my neck felt warm. Sensations I have never felt having lived with with long hair for most of my life. There were birds chirping. There was wind, and at one point about 6km’s into the race a hill climbed gradually for 400 metres. Magically, the wind shifted behind me as if to say “I am here and I am offering you a helping hand”.

Being handicapped races, the slower runners head off first, and it is kind of comfort to know the rest of the field will at some point catch you and swoop you up and help you get home. I love that half way through my run, the fastest runners are only just starting and yet they still catch me. Today, I was nearly last in the field but none of that matters. I am out there doing it.

There is the awesome comradeship at our club as the faster runners catch you and cheer you on as they fly past. Their feet don’t touch the ground and they get smaller and smaller as they race ahead into the distance. And there is the wonderful connections of chatting with everyone afterwards and watching the children enthusiastically participate.

The experience of running on days like this is life giving. There is a total mind and body dialogue that occurs. With cancer, there is a new doubt. As I run I am asking myself if I can do it? Or should I be doing it? And the answers are clear, yes I can and yes I should. There is too much to be gained.

On Mothers Day last year, Mr Cool bought me a pair of sneakers. It’s Mothers Day in Australia in a few weeks. I hope I get a new pair! These ones have carried me a long way in the last twelve incredible months of transformation and learning. If I feel well enough in two weeks I hope to take my bald chemo head for a run in the 8km Mother’s Day Classic fun run in our town which raises money for breast cancer, hopefully in some new snazzy sneakers.

You can register to walk or run this 4km and 8km event held on May 12th in regional towns and cities all over Australia at http://mothersdayclassic.com.au

Brand spanking new

Brand spanking new

One year and 1500km of running later

One year and 1500km of running later


Aniseed! Are they kidding?

Don’t expect to think you know where you are going if you get cancer. One minute the path ahead is clear and the route is well defined. The next, the ‘Dread Dragon’ returns. So today’s lesson for me is to float with the current. Expect changes to happen as they most certainly will.

Today was supposed to be a day of pottering around, bush kinder drop offs and pickups, a nice lunch somewhere, some household cleaning, some packing for tomorrow’s big day back in the big smoke with the breast surgeon, the bearded nurses and the plastic surgeon with a box of ‘Asian’ sized, left sided implants.

At 11:30am while picking up my son from kinder the phone rings and it is my surgeon who I have begun dreaming about and she says “Hi Lise, how are you recovering? How is my breast going?”

I’m not sure when ‘my’ breast became ‘her’ breast, but she is quite welcome to it. I’ll even throw in the other for good measure! So I said “I’m fine. I ran a 10km fun run yesterday.”

“What you ran a 10km race? Why?”

She wasn’t really interested in my response because she quickly moved onto her next question. Surgeons are very busy people you know. But if I had time I might have replied something along the lines that I needed to feel like I can do this, I need to feel strong and fit, I need to feel like I’m not a cancer patient. I have seen and now experienced firsthand how a cancer diagnosis effects the psych. It hits you like a lightening bolt and brings on symptoms of anxiety, nausea, panic, that I would not wish on my worst enemy. It then sneaks behind you and makes you feel weak and sick. I had to be reminded that I was not dieing in those early weeks because I was acting like I was already stage IV. So why wouldn’t I run a 10km fun run with my beautiful friends when my surgical scars were healing nicely?

“What time did you do it in?” (She must be a runner to ask that question). “Oh wow! And you’re only, let me see, 12 days post lumpectomy”. At this point she put her hand over the phone and announced to another colleague in the room that I ran a 10km race yesterday. “Well Lisa you are shaping up to be my best patient yet! I suppose it doesn’t matter how (your/my/our) breast is, as its coming off isn’t it!”

At this point I felt a little chuffed by the 1400kms of running and 300kms of walking to the shops I had en-massed on Runkeeper since April last year.

And then she continued… “Look I’m also calling to let you know that the team met again this morning and we would like to stage your cancer today. So you have to head to two different hospitals immediately in your city to have a CT abdominal/chest scan and a full bone scan. Can you get to hospital in 30 minutes?

“This wasn’t mentioned in our Thursday consult” I said.

“Look, you have one node positive so far, and normally our hospital protocol is to only stage prior to surgery if there is at least three nodes positive. But we don’t want you to have all the treatment and then discover that there is possible metastases elsewhere or another primary cancer lurking. If there are more masses in your body, you’ll need chemotherapy prior to surgery. So surgery tomorrow could be cancelled. I’m not operating on you unless I’m confident”.

I hung up the call and proceeded to walk across to the bush kinder pickup point towards the waiting parents and children. It was here that the Dread Dragon opened his wings and blew flames and embers across the bush kinder carpark almost setting fire to the forest. At that point I saw my friend Catherine and I broke down in tears. Then I composed myself and I was right to go. Dropping off kids with husband, getting driven to hospital, picked up husband and children, getting to next scan at different location for more nuclear dye injections, then picked up and dropped off husband back at work, returned home with children, waited for dye to absorb into my bones, waited for the best Nanna in the world to come to mind children and finally returned back to hospital for scan number two. There was more nuclear medicine, more radioactive substances, more radiation and a litre of contrast to drink for the CT.

With all the time on scan beds today, laying inside two large plastic nuclear donuts, with the whirring and the smell of Kodak processing in the air, my mind had plenty of time to analyse the possible reasons for staging me one day before surgery as normally it happens at least a week before and a lot of the time staging is not required because the nodes tell a clear story. What if ‘the team’ where just being precautionary, that would be excellent! But what if I had two primary cancers at the same time? Or what if it is metastatic breast cancer. Could I be so unlucky? There are no guarantees.

Such news fills you with the memory of every little nerve fibre pain that has tingled or fired in your body in recent times. What if that time I put five beetroots, two raw squash, a tablespoon of spiralina and some chia seeds into my juice and got stomach pain was actually stomach cancer? That headache last week, a brain tumour? A change of plans can put you into a such a tizz.

Luckily, my CT scan experience provided me with enough entertainment to distract me from such thoughts. Contrast is injected into a vein to “highlight” internal organs such as the liver, kidneys, and pancreas and it helps to detect and characterise tumours. After a few seconds the contrast reached my chest and heart and I felt a warm fuzzy feeling. Then I got a metallic taste in my mouth. But the Pièce de résistance is that several minutes later, the warm fuzzy feeling reaches the nether regions and it actually feels like you have wet your pants and are then laying in it. I have read on some of the breast cancer forums that some women refer to this as the ‘ants in pants’ effect. Some even brag about climaxing at this point. Not me, I just felt like I weed myself.

Tonight I get a phone call from a friend to bring me the terrible news that a wonderful, vivacious colleague who used to teach art at a school I taught at, has passed away today, her battle with breast cancer began around eight or so years ago. Timing is everything.

So now, all thoughts of diagnostic results have been set aside. I’ve put the Dread Dragon to sleep outside with the dogs. I have had a laugh tonight on the phone and texts with people who are important to me. I am back off to the big smoke tomorrow for my mastectomy surgery  and full axillary clearance as planned. Or maybe not!

My question is, of all the flavours in the world, why is it that the CT contrast drink is flavoured aniseed? What the hell were they thinking? It’s like something I drank out of a bucket with a garden hose, Corfu, Greek Islands, circa 1996.

20130211-184552.jpg Happy hour. Cheers!


An encore with the bearded nurses

I’m hoping that throughout this whole journey, wherever it takes me, there will be no greater ‘flight or fight’ stress response than the one I experienced when I first waited for results between initial biopsies and being told by my GP with a nervous, wry, smile on his face that I have cancer. My fight or flight response went for sixteen days and I don’t ever want to go back to that dark, dreadful place.

Today, I have been totally surprised by my emotional response, or lack there of, to the news I received yesterday. I have gone into logical, planning mode. I even have the desire to clean my house and do some of the jobs I have been neglecting for the last year because I have been busy planning my next fun run, triathlon or sticking to my half marathon training plan. It’s akin to a kind of pregnancy nesting.

Yesterday, we got the early news from the surgeon that the cancer has made it to one of the four nodes removed from my armpit, and there are still cancer cells in my breast post lumpectomy, so yes, it’s back to the hospital in a few days for my second surgery in two weeks. I’m starting to worry about my enjoyment of anaesthesia in a way that Michael Jackson experienced it. To wake from a slumber with a totally relaxed mind and body is bliss. And then the reality and pain slowly come into focus.

This time, my visit to the surgeon with the nice perfume, and the room with the 1970’s wallpaper will entail a full mastectomy, and the removal of all of the lymph nodes under my armpit, and for good measure some reconstructive work done immediately. I hope I get to see the bearded nurses again. As I will attempt to back up my previous visit with some equally engaging chatter and some new comical material. I wonder if they will recognise my blue nipple again?

Jusepe Ribera (1591-1652)

Bearded nurses are awesome! Jusepe Ribera, 1651, The Bearded Woman Nursing.

The surgeon was rushed in her consult yesterday. She had come to hospital just to meet me. There was a plastic surgeon waiting outside the door. On cue, he entered and after polite introductions we got down to the business of what I wanted to look like post mastectomy. I was shocked when presented with a box of breast implants. Oh the enormity of a ‘b’ cup implant. Those things are humongous and scary and my reaction made the plastic surgeon say, “It’s okay, we can also use some of the smaller implants made for ‘Asian’ women”. I still can’t stop laughing about that. All this talk of implants and cup sizes makes me feel like I’m in an episode of Embarrassing Bodies.

I only started to wear a bra in high school because every other girl in the PE change rooms was. Not because I needed any sort of support. And when my best gay friend, JRF, gently suggested to me that at 32 and pregnant, “Darlin’ I think you should be wearing a bra!” as I was, in his eyes, ‘bouncing’ down Chapel Street. I remember looking at myself in the shop windows, to see if his statement had any merit. He was right, I was bouncing and drooping. It never even occurred to me that yes, perhaps it was time for some support.

On a more serious note, the biggest shock in all of this was that the tumour was double the size of the initial tests. But this often happens and it’s more about the pathology process of measuring the way a malignant tumour messily branches out with its twisted and knarled arms. The pathologist measures the full length from branch to branch, through an array of finely sliced segments, not just the overall shape of the mass as ultrasounds and mammograms measure.

Also of shock to me was that my tumour was the fastest growing type one can have, graded three. This made me wonder how fast do these bastards grow? Did it start growing whilst I was out jogging one day late last year? Didn’t it like the music I was playing? Was it fed from my GPS tracker on my iPhone while I was using RunKeeper? The irrational thoughts came streaming, pulsating, coursing through my mind. But, after some initial tears and questions, I was able to pack these thoughts away by closing the the lid on the box. I very quickly returned to my calm, logical planning self.

There were some positives in all of this.

The cancer is very positive for the hormones oestrogen and progesterone, which gives me an additional treatment option of long term medications that block the cancer’s ability to feed of these hormones, and if the cancer can’t feed then it can’t grow. So there cancer, take that! Ironically, when we were trying for our children I often wondered if my body was producing enough of these hormones to make and sustain a pregnancy. That sneaky, selfish cancer has been using these hormones to benefit itself.

There will be years of hormone altering medications down the track. And this is quite funny as I have never remembered to correctly take the contraceptive pill. I am also the person who gets a panadol out if I have a bad headache and then forgets to take it. I forget to take my multivitamins. I forget to make the cup of tea from a kettle that has already boiled three times prior.

Apparently, fast growing cancers are also quite vulnerable to the formidable beast of chemotherapy. Rapidly replicating cancer cells shrink and shrivel to nothingness. Or at least that is what I am visualising.

I have also tested negative to the HER2 antibody which is a cellular protein which also speeds up the growth rate of cancer. So that is also a fortunate thing as I won’t need the medication to flick that protein off.

I can’t help feeling how fortunate I am. There are some who have what is called a triple negative cancer, which means these three factors, the two hormones and the HER2 protein are all negative. And these cancers only have chemo and radio as available treatment options. I am lucky, as I have this additional hormone therapy as part of my arsenal.

And the biggest positive of all, is that tonight, in light of more surgery, a lost and altered body part, the prospect of a long recovery, chemotherapy that has again been delayed, with a planned second mastectomy post chemotherapy, life goes on with cancer.

I am going to have a fabulous weekend, lunching, dining and running a 10km fun run with gorgeous, positive, intelligent and spiritually enlightened women. This weekend will be jam packed with many soul sister type experiences and these just fell into my lap today. A fitting way to farewell my 37 year old breast in the coming days. A bon-voyage breast festival of sorts!

And to top all of this off, tomorrow, my gorgeous husband is buying me an iPad!