January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon. The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.
Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me. When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared. I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment. It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops. Through my goggles I could just make out the Port of Echuca Wharf in the distance.
I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming. Of seeing arms and legs thrashing and churning through the water. The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers. Of being pushed along by the current of the ancient river towards something great. The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition. I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me. I wondered if I would ever do anything like it ever again. I would have to wait a long time to see.
Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me. Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.
After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event. In November, once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week. But it was too soon and too much for my chemo and surgically depleted hemoglobin. I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue. I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.
But in mid December I decided to have another go at reaching the goal and I started training more frequently again. I wasn’t waiting any longer. My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.
I’m glad I didn’t give up on this idea. I’m glad I didn’t wait.
This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness. Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges. A bit more of a go getter. Some people suggested I should wait. Wait till my body had recovered more. But there is no time to waste. Why should I wait to be ready to exercise? To train? What was I supposed to wait for? What was I fearful of? Getting better? Getting past cancer? Getting on with living?
I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something. I’ve made loads of excuses. I sat and waited. The years rolled on by, and I was still waiting. But I’ve learnt this year that the best time to start is NOW. Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go. Just drop the fears and the inhibitions that hold us back. I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids. I am what I am. In all of my puffy, wobbly, bald, post treatment glory.
While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably. I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things. Waiting for the loo. But not waiting for the things that were important to us.
Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me. I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’ that drove a 700km round trip to surprise me. This gesture mean’t so much to me and I will be forever be grateful to them for doing that. Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.
When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset. This was partly because he saw my reaction to Mel and Bevan’s arrival. But it was also about him remembering the details of this previous year vividly.
He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably. Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors. She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers. He had waited a long time for “his” Mum to be “his” Mum again. And now we were back in the place where in his mind, it all began.
After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos. He played with his brother and they watched and waited for their parents to come into view as the race progressed.
With all of the excitement of surprises from sneaky friends and unsettled kids, Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here. I had waited a long time to get back here, to this moment.
We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.
Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.
I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in. Then I resumed swimming. When I reached the river exit I fell over getting out of the water. I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year. I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF! Riding a bike in a wetsuit? Now there would be a challenge. But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.
On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile. As I pedalled along I reflected on what had occurred in 2013. My body felt more tired with each lap but I felt comfortable, and I was okay with being last. I was just thankful to be there, and so grateful to all of the people that supported us in 2013.
Then out of nowhere a woman rode up along side me. After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon. She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not. But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing. So on just 18 days of training she turned up and completed the race. What a legend! And that made two of us who were not waiting.
My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.
Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet. But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow. I’m glad they didn’t have to wait a second longer to experience this.
Now if only I didn’t have to wait for some more hair!
My recovery is going well. Just three weeks post rads and the burns have completely healed with only a slight suntanned tinge to the area and some residual itchiness. The tissue expander is tender and there is some hyper sensitivity if I am brushed past. This may always exist and I’m hoping I don’t develop capsular contracture of the tissue expander in future which sometimes happens from radiated implants. But so far it’s looking good. I am scheduled to have an exchange surgery which will swap the expanders for silicone breast implants sometime in the next 18 months.
I am thrilled to be getting back to walking, riding my bike and running. Well, if you can call jogging slower than what most people can walk, at least it is something. It’s going to take some time to get any sort of fitness back. When I run it is hard. It is uncomfortable. I want to stop, but once I start I won’t let myself walk.
It has been a lot harder that when I started 21 months ago on a serious fitness and health kick, (which led me to discovering cancer). I must have low haemoglobin from the blood loss from surgeries and chemotherapy. The last mastectomy in August resulted in quite a lot of blood loss, but not enough to have a transfusion. I could really do with some Lance Armstrong type blood doping now! What’s that eloquent quote? “All good things come to those who
wait go out an f@*ken earn it!” So I’ll just have to take my time and keep chipping away till I see some improvements in my cardio fitness.
All of the expectations of returning to what I was twelve months ago aside, getting out again has helped immensely with energy levels and getting on with things. Big thanks to Catherine, Megsie and Mrs Kenny for being there on the occasions where I took my first steps on the exercise road as a “survivor of cancer” which is a very strange thing to refer to myself as. I’ve been treated for cancer and now I am not being treated for cancer. But I am here, and I am out moving, and breathing, and smelling the air, and taking it all in. There is a new appreciation for everything.
The only thing that is bothering me at the moment and believe me, there is a lot of things that could bother me when I reflect on the last 11 months, is that four months post chemo I still don’t have a thick layer of hair on my head and I seem to have developed some male patterned baldness. You know when they say couples grow to look alike? Well I think that is what is happening. Mr Cool and I are morphing into the same man! My hair is one inch long and it is terribly thin and you can see all of my scalp in daylight. I’m hoping this will rectify itself in the coming months or I will forever be wearing scarves, wigs or opting to have a shaved head for the rest of my days.
I’m not sure how I feel about this given I had long straight hair for 38 years. I never contemplated how long it would take to regrow hair. I had a lot of fun taking the hair off for the Shittytittie Chemo Cut Challenge. Some women never have proper hair again due to the chemo drugs, it is rare but it does happen and can be psychologically difficult to come to terms with. If I turn out to be one of them, if at least I am alive and that is what counts.
Last week a student I taught back in 2006 wrote me a letter after hearing of my circumstances this year. The news made him reminisce about his experiences in a Winter Alpine Environment subject I taught at university. How amazing is it to receive a hand written letter in the mail from someone? I can’t even remember the last time I received one.
“You’ll be glad to hear that my relationship with the mysterious and moody mountains still continues strongly and I have just completed two terms teaching at an alpine school. Many of your alpine lessons have been passed onto my students too. I have been teaching people how to paragluide and have taking tandem joy flights for a few years now. Many of your weather lessons have helped build my meteorological knowledge up too and I fondly remember you saying “you should observe the weather in the mountains as often as you think about sex!” Lets just say I read the weather quite well now!”
Ha ha! I can’t recall saying that, as I used to observe the weather in the mountains more than I thought about sex. But that’s just me!
He then went on writing his beautiful letter and extended an offer for me and my family to go for a fly around the mountains with him if the weather is good. That offer might just be too good to refuse!
He was and is one of those free spirit and awesomely natured folk, with a depth to him and an understanding of how to really live. It’s no surprise to me that he now teaches outdoor education intermittently in the winter months so that he can spend the other half of the year taking paragliding joy flights in the mountains. If ever there was an experience of living on the edge it must be soaring high above the Australian Alps!
The letter and the offer, just awesome! And I promise to write back to you. With a real pen and paper, and an envelope and a stamp and everything!
Big smiles to you too Wally, big smiles on the winds,
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
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.
Thanks to our 8km local reservoir water tower run for making me a better version of myself in the past ten months. So glad I discovered running again after all these years. I love running in this forest. Back as soon as possible.
Yesterday was one of those very special zen life moments. I have paddled the Port of Echuca many times, but yesterday I swam with hundreds in the mighty Murray River past paddlesteamers, framed by beautiful rivergums dappled with afternoon sunlight and with flocks of cockatoos flying overhead. Uniquely Australian. Swimming with the current in an ancient river. Full of energy and pushing me towards something great. Can’t believe I did this race. And probably wouldn’t have, had it not been for the love and support of my awesome friends and family. To them I say thanks. Josh, Michelle, Mike, Jenny, Jac, Ben, Neil, Jan, Justin and our gorgeous kids.
This day pretty much encapsulated an end to a brilliant ten months. It was the end for the Mayans, but something aligned in my life in 2012. I was happier and more grateful for my life in a way I had not been since I was a child. It was a year of physical and emotional transformation. Long term friendships were seeded on a deeper level, more than ever before. I reconnected with old friends at my twenty year high school reunion. My heart opened up to intense new connections. I met many amazing and inspiring women. I started running. I ran my first half marathon. I raised money for a cancer charity. I put the loss of my dad to cancer four years prior behind me. And I started living. It was a year of achieving self actualisation. I found myself. I was happy.