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.
I never had a sister. It wasn’t something I missed growing up as my two older brothers kept me busy. We are all three years apart and as the youngest I was always behind the eight ball. Fond memories of torment are a plenty.
I was once chased up the dam paddock by my eldest brother dangling an enormous monster yabby. Terrified and pleading for mercy, my brother and the monster finally retreated.
Then there was the time my brothers revelled in the knowledge that my pet lamb had been butchered and was sitting “roasted” on our kitchen table. I was the only one in the family that enjoyed the roast lamb that evening. As a matter of fact, I scoffed second and third helpings and yet no one else ate any of it. I vaguely remember some statements about the lamb not having a pink butchers stamp on it, followed by lots of laughter, but I never twigged. They came clean years later.
There were the times I fell asleep on the couch of our parents friend’s house at the end of our shared family dinners, my brothers would wake me just enough to ask me questions and laugh at my absurd dream state responses.
There was also the day in the summer of 1984 when they asked me what a ‘virgin’ was to see what my response would be. I was nearly 10, and they were 13 and 16. Madonna had just released her “Like a Virgin” hit and it was playing on Video Hits. You know the film clip where she is rolling around on a gondola traveling the canals of Venice and she is being stalked by a predatory lion? Well, I confidently and very seriously informed them… “Everyone knows that virgin is the term to describe the lion family, you know like how primates is used for monkeys”. This was met with rolling laughter and many years of embarrassing recalls of the story to their friends.
This relationship of sarcasm, facetiousness and eye rolling torment followed me into my university years. I recall a night back in 1993, being dropped off home at the end of a romantic first date. When it came time to be kissed goodnight by my six foot, strapping, accounting student date, my brothers put their heads up from their bedroom window and yelled out in their best blokey, testosterone fuelled tone “Go on, get into her!” There was never a second date!
Anyway, you get the picture.
I never had bridesmaids at my wedding, just my bestie, JRF. He helped me get into the tight space of my Dad’s yellow Monaro, stuffing my dress into the car’s very low, leather bucket sports seats. The three of us drove from one country town to the next where he helped me out the car in the town’s main street and then put his arms up under all the tulle and petticoat to fix the dress, and to lower my train to the delight of the watching tourists. Yes, gasp! Unbelievably, this tomboy had a train on my wedding dress that I bought second hand from America off eBay, (don’t worry it wasn’t like Princess Diana’s or anything!) Together, the three of us walked a block to my nervously waiting Mr Cool fiancé and all the guests at the wedding ceremony. My eldest brother and my six foot bestie had also helped me apply my makeup that day.
I never had a sister to balance any of these events. But now I have a quite a few.
Here I am in 2013 and I’m surrounded by loving and nurturing women. They are swimming around me. Some do freestyle, some are breaststrokers. Some just splash. Some dive down to the bottom and sit for a while. Some float on their backs. Some are into that synchronised swimming debacle. But they all take turns at immersing themselves in MY pool.
I don’t know what changed or when I opened myself up to women exactly. My ‘future self’ was whispering to me about women in recent years. The most likely culprit of my admittance to the “Royal Society for the Appreciation and Connection with Women” (he he) likely sprang from the journey of becoming a mother. Through the process of pregnancy and birth, and a healthy dose of mothers group experiences I became better equipped to connect. This has ultimately improved my relationships with my long term female friends as well.
So here I am, surrounded by inspiring and nurturing women. They have invited me to new years parties. They have run fun runs with me, shared holidays, held play dates. Since this diagnosis they have brought home cooked meals, they have minded my children. They have showed up with the freshest bags of apples. There have been dinner dates and gossip sessions. They have offered accommodation for my family when travelling long distances for treatment. They have contacted me and offered to share with me their experiences with breast cancer. They have empathised with me over the experience of having brothers.
Just today, a very special pair who happen to be real sisters, shouted me lunch and then took me to my first ever pedicure in 38 years (minus one week). We met through our shared experience of becoming mothers who attended the same swimming lessons for our children four and a half years ago. The connection was meaningful from the start and has built in intensity. Last year, at my sons birthday party they referred to me as their sister. I was secretly chuffed and very grateful.
So, back to the pedicure. What is a pedicure I asked? Whoever gets the job is going to have to scrub 38 years of slime and dead skin off these puppies. How long are we going to be at the spa for I wonder? In the back of my mind the tomboy in me is thinking… “this is a bit girly isn’t it? Don’t worry, you have cancer now so just live a little. Just run with it!”
I thought this pedicure would have to take weeks. You see, my feet have carried me on bushwalks all over the different terrain in Australia through my career in teaching and lecturing in Outdoor Education. These sad, neglected and biomechanically poor feet have had to endure the worst of conditions. There has been the carrying of heavy loads. They have traipsed through deep snow and sand and climbed the highest mountains in the land. They have endured the worst kind of blisters and leeches. There have been odours too. To add to my podiatry woes, last year I took up distance running after a 19 year hiatus, my poor neglected feet were made worse as the long runs caused some of my toenails to fall off and they have not grown back properly.
For the last 20 years my tired little stubby toed feet have been dressed largely in the very unattractive Scarpa leather hiking boots and Birkenstock sandals. No one has ever labelled me a lesbian, but I’m sure many people may have secretly stereotyped me as one. If Hush Puppies were acceptable attire for a thirty something then I would absolutely go there. My wardrobe has only ever had two, maybe three pairs of scuffed and stinky shoes on the go at once. This is why my breast surgeon excites me so much. That women has a new pair of designer shoes every time I see her and they aren’t from Target. She is also able to run in those stiletto thing-a-me-bobs. Yet I can’t even stand in small feminine heals for a few wedding party shots. Okay, I am digressing about the surgeon again…
So, after a long beautiful lunch chatting about husbands, children, cancer, and all things in between, off we went to the spa. The spa normally closes earlier on Saturday, but the sisters admitted to drawing “the cancer card” and the owner kept the spa open longer. The experience was lovely. Three technicians worked outside normal business hours thanks to “the cancer card”. They massaged our feet, calves, heads and shoulders, and gave us all a pedicure. It was bliss! For my toenails, I chose the colour “My paprika is hotter than yours”. Who gets paid to come up with this stuff? I called it orange. One of the sisters fell asleep and briefly started snoring through the process. This was later clarified when she described dreaming that her cat had jumped on her.
When it was finished the three of us broke into hysterical laughter. It was the snoring and admitting to using “the cancer card” that did it. We laughed and laughed as I suggested other ways we might used the cancer card. Great tables at restaurants? Preferential parking? Jumping to the head of the queue for something?
It was a wonderful afternoon experience. I have been missing out on these things for all of these years.
Tonight one half of this gorgeous pair of sisters hesitantly contacted me. She told me that in their family, many many moons ago, they had a baby sister pass away. Her name was Lisa.
Since Sunday, I have spent time with three very important women in my life and I have broken down in tears with each of them. There has been a mental shift since the weekend of wonderful experiences with my awesome Melbourne friends.
I visited my dear Nanny who turns 90 in April. She never ceases to amaze me. She was 52 when I was born. There was so much living that went on in her life before I even met her and she is still with us. She has experienced her fair share of loss from cancer in recent years. But she is a strong and upbeat lady. Her sunny disposition and genetic luck has allowed her to live a long life, much of it without teeth. In the late 50’s she had a dentist in London remove her ailing teeth to prepare for dentures, except she immigrated to Australia on a ship earlier than anticipated and the dentures never became a reality. Her sweet sunken cheeks have always been the vision of the perfect Nanny to me.
I had a visit from my awesome sister in-law who played lifeguards with my children for hours, rescuing imaginary swimmers from imaginary sharks in our garden. With credit to “The Octonauts” children’s television program, the species of sharks were diverse. From the surf lifesaving tower on the deck they took turns at the command post talking into pretend walkie-talkies. This was to the delight of my eldest son who had not removed his lifeguard cap for three days prior. She cooked us dinner and cleaned our bathrooms before she raced back to the airport for her return flight to Queensland. My brother chose for himself an amazing life partner and mother for his children.
I also had a pop in visit from my wonderful mother in-law yesterday as I frequently do to see how we all are. She has the knack at turning up at the most perfect of moments. She has a kind of sixth sense of sorts which I am eternally grateful for.
There is something very powerful about embracing another woman that you care for when you have breast cancer. The disease is taken very personally. It sniggers at the qualities that make us mothers, daughters, sisters, aunties, nieces, grandmothers and granddaughters. It attempts to sabotage a bond between women. But cancer can never get in the way at that. An experience like this just draws people even closer.
Even as I type this the tears are welling a little behind my eyes. I’m thinking this may be the start of the depression procession of sorts, or it might not be. I just have to watch where this goes and act quickly. The breast care nurse told me not to wait, but to see my GP for some anti-depressant medication. I have never dallied with anti-depressants in my life, but I was given some post diagnosis and one of the side effects made me anorexic. So I understandably have some trepidation. I first would like to try my own ‘walk and talk therapy’. This is where I walk for an hour daily, and talk to as many people as possible about how I am feeling. I am now fit enough three weeks post mastectomy to get out and move again. I can’t yet run as I am still healing and the tissue expander is settling. But exercise has been so beneficial to my moods in the past. I think this might help me immensely. I might also see a psychologist to have a chat, though I think psychologists should have really great coffee machines in their rooms. Maybe even some biscotti or something. That might help too.
Part of me is wanting to rebel against the predictable pathway of the breast cancer experience. I am seeing this common journey that women take on forums and blogs and in the knowing looks of women sitting in hospital waiting rooms. Doctors and nurses are quick to try and solve the problems for you. Often with medication. But it is just going to take time. Emotionally I will fall apart. It is a given. But I will put the pieces of myself back together again. Of course it is easy for me to articulate this at present, as I haven’t yet been gripped by the effects of chemotherapy. But this needs to be ‘MY’ journey. I don’t want to be told I will get depressed. Or my hair will definitely fall out. Or my nails will turn black and fall off. Or my bowel will never be the same. A self fulfilling prophecy effect will have no part in this. I need to let the experience unravel itself.
It has been two months since this cancer wheel started spinning. It has been a bit like being on a spinning ride and the Royal Show. The Gravitron ride was a favourite when I was younger. It looks like a spaceship and you enter and lean against the wall. You are propelled round and round with such force that you just grip on as tight as you can. You can’t really move as the force is too great. And then as it slows and gravity takes hold, you see the people opposite pulling their dresses back down to a respectable place and wiping saliva from their faces. Slowly but surely, everyone is back in the land of gravity, or should I say reality and the dance music stops. Then everyone gets off and gets on with things. Suddenly, since the surgeon, plastic surgeon and breast care nurses dumped me, I have all of this time on my hands to think about what has actually occurred in the last eight weeks.
To add to this reality, today I met the geneticists from the Peter Mac Familial Cancer Clinic. There were two people. Geneticist One was nearly seven feet tall and wore glasses. He was an enormous graceful giant. His height may have instilled in him an interest in how genetics worked and this may have been motivation enough to follow this career path. He reached out with his gigantic hand and softly shook mine. We walked the corridor side by side and went into a consult room. As he stooped through the doorway to enter the room I expected to see a beanstalk and a golden goose. But there waiting behind the door was a genetics counsellor. A stunningly beautiful girl, fresh from university and dressed impeccably. She presented a set of perfectly pursed lips painted with a deep red lipstick. I so wanted to get out my iPhone and take a picture. A new obsession perhaps? For a while I found it hard to absorb what she was saying because of her lips. I kept focusing on how they moved. Then how her wonderfully styled brunette hair framed her face.
I had gone prepared with all of the dates and as much as I knew going back four generations. The information covered relatives from both Australia and the United Kingdom, many of which I have never even met before. Much of this information I compiled by trawling though the work my eldest brother had done on the Ancestry.com website. I am really grateful for his interest in genealogy. I also contacted distant relatives via Facebook, and got some information from my Mum. Armed with these pages of causes and dates of death and existing illnesses I marched confidently into the room. Impressed with the research data, the gorgeous red lips asked me if I was from a research background. I told the lips that I used to be a teacher and lecturer and I love to research. I thought I was just going to supply them with information about my family cancer tree today. Easy.
I was so naive.
I had not prepared for the level of emotional and intellectual drain this meeting would entail. The beautiful woman in front of me was full of information. But there was a deliberate tilt of her head which revealed a kind of pity to me. She obviously thought she knew where my journey was heading. Like she has access to a crystal ball or she has seen this journey many times before. Talking with the broken about their potential mutant genes as they are gripped by this disease, as they search for an explanation as to why they are afflicted. So I decided not to focus on the head tilt anymore.
After looking through the details of my family cancer history, there was discussion about gene faults that if found would put me at a higher risk of developing breast cancer in my other breast. Then they pre-empted a discussion that I might be having with my oncologist in weeks to come, this time about my ovaries. If I test positive for one of the BRCA 1/2 genes, breast cancer women under forty are advised to have their ovaries removed. There was also discussion about multiple potential gene faults merging to have created some crazy mutant genes that can cause young women under 40 to get breast cancer. I don’t really need to know about this. I can’t prevent what is done.
What does all of this mean?
The reality is that only 5 to 10 percent of tests come back positive for some genetic link. Many responsible genes and genetic mutations have not been discovered yet. Though there is certainly a chance that in 15 years researchers will have discovered more genes at work with this breast cancer disease, if genes are even a factor. It is such a complicated matter how diseases occur in some individuals and not others. The ‘nature versus nurture’ theorists are still pointing their fingers and arguing on the sidelines.
I am informed that my blood sample will be stored and will be used in the future by genetic researchers. I enthusiastically offered up litres of blood for this purpose and this drew some laughs from the Giant and the Beauty. One vial is enough. But I find this research to be positive. After all, this process is how the BRCA 1/2 gene faults were discovered and this has benefited many.
Today, genetic testing might assist some breast cancer women and their practitioners to make decisions about whether they will undergo particular treatments in favour of others. It is also a process high risk women (such as those with one or more close relatives having had breast cancer) might explore to assist them to make decisions to prevent breast and ovarian cancer from occurring. There are many women in Australia and around the world who have spent much of their lives worrying about the risk of getting this disease. There is a whole network of women supporting one another through a great organisation called Pink Hope. It can be found at http://www.pinkhope.org.au. These women cling to the results of their genetics tests. I feel quite guilty given I had never given breast cancer a thought and have been free of the worry these women have had to endure, and yet the disease found me anyway. Here I am, today, with a genetics counsellor talking about breast cancer genetics.
In my case, the decision has been made, given my cancer is multifocal and aggressive there will be a second mastectomy, so I don’t need the results of a genetic test to tell me what I should do. There will be post mastectomy radiotherapy and genetic testing is not a useful indicator for whether to do this. But it might clarify the ovarian issue down the track. If I am negative for BRCA 1/2, it is unlikely the ovaries will need to be removed. This is a really important decision, as removing ovaries prior to menopause can lead to a whole array of health issues in young women such as osteoporosis and heart disease. But if faced with having a BRCA 1/2 gene with a hormone receptor positive breast cancer and preventing ovarian cancer I know what I would chose.
After almost two hours of discussion about genetic testing, information, privacy issues, disclosures, pros and cons, ramifications of it moving forward, etc, I am clear that genetic testing will be a good thing for me and my immediate family, but I will talk at length with Mr Cool about this. I also like the idea that I am contributing to a research data bank.
There is just one small matter to be sorted. Before I can sign on the dotted line, I have to see what the ramifications on my existing life insurance policy are of genetic testing, as it can substantially alter or even void some policies. So I have to look into this before the signing and supplying of a blood sample. Some types of insurers don’t like the risk associated with someone who has tested positive for some genetic predisposition. Bastards! Luckily my ‘future self’ told me to take out a life insurance policy a year ago as I had no current coverage through my superannuation as a stay at home mum. I would be “up shit creek without a paddle” if I wanted to take out a new policy now. Thank you again future self.
Down the track, my family might like to know the results of this test. There is no urgency for any of them now. But if I have any genes responsible for this cancer, it might be beneficial for one of my brothers to be tested. If he has the same gene then as parents, they may impart such information to allow their children to make a decision to be tested when they are adults. Likewise, all of this applies to our own children, my cousins, and my cousins children. This is all irrelevant at the moment but it is worth giving some thought to future possibilities.
Genetic testing is a highly sensitive and deeply personal issue. It does have quite large ramifications for the future. People can use the knowledge about genetic predispositions in many ways. Some might live proactively and live a healthy lifestyle and be screened. Some might live in fear of developing a disease they have a gene mutation for. Some might chose a route of cowardly defeat and live a lifestyle detrimental to health as if they are saying “whats the point?” Some might not ever give their genetics a thought. Of course, there is also the possibility that one could have a genetic mutation for a particular disease and it is never activated in their lifetime. There are no guarantees with anything.
I was glad I had the opportunity to sit with the Giant and the Beauty for two hours. I look forward to my next meeting as it feels like I’m back in the dating game.
I’m feeling a little bizarre that you started growing in my body and feeling betrayed that you chose my breast. My breasts being the sacred place that only very recently helped me feed my beautiful children. So as I wait to hear your story next Friday and try to live my life in the meantime, I just wanted to say a few things to you.
I am sorry to have left you in the big smoke last Tuesday and driven 200kms away from you. I hope you are doing what you are supposed to inside the laboratory. I hope you are multiplying inside the petri dish. I hope you are reacting to all of the chemical work that is being done. I wonder if the scientist ever thinks about who these cells belong to or where they previously lived. If ever I had respect for science it is now. This moment.
I hope you can be eradicated from my body. But I won’t ever know. I won’t ever know why you started growing. I can surmise hundreds of possibilities without any scientific base; the emotional footprint I was born with, my inability to handle stress, my love of cheese, chocolate and wine, consuming artificial sweeteners as an adult, too many tinned tomatoes, endocrine disruptors such as electromagnetic fields, power-lines, pesticides, shampoos, cleaning chemicals, contaminated water, plastic bottles and containers leaching BPA into my food and water, microwave use, bore water, some mutant gene or some inherited gene from war time England, not breathing deeply enough, not having an alkaline diet, not consuming enough antioxidants, breathing in chemicals inside hot cars, eating too much glucose in my life, if my weight fluctuated too much, and so on, and so on. But I will never find a reason and searching for causes is pointless.
I hope you tell the pathologists and the oncologists and the surgeon your story with the details written clearly and truthfully in every chapter. I want to know how fast you changed, how different you are from the rest of me, how large you are, how clean are your edges, how responsive you are to my hormones, the extent of your involvement in my lymph nodes, if you are great at seeding elsewhere or not. We are all ready to listen and understand.
The only certainty at the moment is that I was ready to find you after almost a year of healthy eating, exercise and weight loss. I don’t know why I chose my 37th birthday to make such a change. But you have made me even more determined to continue on this health and personal respect quest. I might not have found you had I not laid quietly and heard you whispering. It was almost like I knew something was around the corner that I needed to prepare for.
A beautiful friend called Catherine, who I only met last year in what appears to be the year of my awakening, shared with me her readings on Buddhist monks, acorns, trees, potential and future actualisation… and she really does believe that my ‘future self’ has given me the heads up and already knows that I have the strength to get through this. So I am ready and waiting to hear your story.