I have spent the last seven days dealing with some hideous gastrointestinal bug. We had to cancel a plethora of planned celebrations and activities.
First born’s fifth birthday party celebration in the park complete with party games such as What’s the time Mr Wolf and treasure hunts… cancelled.
My own romantic birthday dinner with Mr Cool… cancelled.
Fine food experience indulging at one of the best restaurants in the city with girlfriends pre chemo before my taste buds drop off the face of the Earth and land on Mars… cancelled.
cancelled. Err, I mean… postponed.
Yep, that’s right, this week I haven’t eaten much of anything, and unfortunately I have been able to taste what I had eaten more than once!
A friend asked me if Pavlov’s dog was at work. It was worth giving some thought. Perhaps classical conditioning was at play, but instead of salivating like Pavlov’s dog when a bell rings, I was channelling what it might feel like to have chemotherapy in the coming weeks. My poor body! Who gets gastro for a week before chemo and gets their chemo delayed? I do. Go me! Come to think of it, I also remember experiencing morning sickness a month before I got pregnant with both of my children.
Concerned folk have made statements that my immune system must be low because I have cancer. I don’t see myself as being fragile and vulnerable. I thought I was healthy until the doctors told me otherwise. I just think I got the regular round of children’s bugs that you get when you live with young children that have a much better social life than you. So this week I have affectionately termed the “Gastro Pre Chemo Disco” week. And instead of the dance floor and the bar, I was running between the bathroom and the boudoir. I have not done anything cool like the Macarena, Nut Bush or the Bus Stop though. Remember those? At the Gastro Pre Chemo Disco there is the “Shit to the Loo My Darlin Shuffle”, the “Riding the Big White Porcelain Bus” and the “Heave Ho, Dosey Doe” manoeuvres. The next dance floor crazes coming to a disco near you! I can laugh about it tonight as the tummy pains have eased and the food is staying down again.
There have been lots of visits to hospital and introductions to new characters this week. I’m excited by what lies ahead in a sadistic kind of way. I’m like the new girl on her first day at a new school. Full of apprehension and hope. I’m getting shown around all the different facets of hospital life as a chronic disease patient. I’ve even been given a VIP card for speedy entry to the hospital’s emergency department. If I arrive at emergency feeling ill they have to see me quickly in a “Do not pass go, do not collect $200 kind of way”. Apparently chemotherapy has some perks. I wonder if the card also gets me a discount at the hospital cafe or pharmacy? Imagine that! Ten percent off for all VIP patients! I can’t wait to walk straight past and smugly make eye contact with all of the sick people who have been waiting for hours to see a triage nurse. At our hospital there is a queue just to see the triage nurse, then hours upon hours to wait to be seen by a doctor. What annoys me most is that the waiting room is filled with these moulded plastic chairs that you can’t lay down on. They don’t want you to be comfortable while you wait. Our hospital is a very stretched and under resourced hospital but at least the staff are great.
On Tuesday, when I thought the gastro bug had been exorcised from my lifeless body, I staggered my weak little self into my oncologists office and we met for the first time. My skinny jeans looked great on that day. It has been over 5 weeks since the mastectomy and 7 since the lumpectomy. It has been an anxious time of thinking about the surgical effect on the cells within my altered tissue, vascular and lymphatic system. I was told my lymphatic system had an excellent clearance rate so the thought of giving these cancer cells this length of time to go on a little journey around my body has not sat well with me. Lets hurry up and get this bloody chemo show on the road!
Interestingly, the Oncology Department is one floor beneath the level I gave birth to my beautiful children in. The layout of the building is identical. Walking into reception was exactly like going to have a pre birth women’s health check. Except without all of the excitement and joy of bringing a new child into the world. Incredibly, my oncologist’s office is located directly under the room where I spent precious time with my first newborn son.
The receptionist and oncology nurses were bubbly. I have found this with receptionists in these cancer related hospital areas. I wonder if it is a job requirement? Don’t be forlorn, don’t be depressed, at all costs smile and exude a positive energy because you are dealing with people who have cancer. Sometimes it comes across as a bit forced. Ease up on the happiness please ladies.
The time spent sitting in hospital waiting rooms provides exposure to the sort of television one would normally never wish to be exposed too. Though in this scenario, I’m kind of grateful for the distraction. This week I learnt that Lindsay Lohan can do all sorts of crazy stuff and keep getting away with it in the courts. I learnt that Tiger Woods is in a relationship again. (insert yawn here). Then the newsreader announced the breaking news that Gina Riley from the hit Australian comedy show “Kath and Kim” is being treated for breast cancer at 51 after a routine mammogram found a tumour that she wasn’t able to palpate.
After losing interest in daytime television I moved my attention to the room I’ll be sitting in a lot in the coming 5 months. The walls were covered in thousands of colourful paper cranes and instructional posters about hand hygiene and what to do in the event you have diarrhoea. So educational and useful for me this week. There was a book library which was filled with the kinds of books that sit on the shelves of charity storage for years as no one wants to spend 50 cents on them. Finally, my name was called in the tone you hear when being called into a principal’s office for some wrongdoing. With panic, you fumble to return your magazine, pick up anything you have, drop something, pick it up again, adjust your shirt, feel your cheeks blush, and start walking towards them. It feels like you have held them up for 20 minutes, when in reality it has only taken you 10 seconds.
Mr Cool and I entered the room of Mr Oncology. Initial impressions were largely positive. Shaved head, attractive, fit looking, bespectacled, mid forties man. There was a slight wiff of arrogance, but this quickly gave way to a doctor who knows his stuff. He generously gave us an hour and a half of his time. Most of it was spent addressing my questions about treatment. His body language was open. Not once did he indicate we were progressing too slow in our consult which has been a common feature of the cancer consult to date. There are always more cancer patients to see. By the end I felt confident and reassured that this oncologist knew his stuff and would look after me.
We had lots of similarities. He explained things by scribbling on a notepad which I souvenired. These scribbles were little extensions of his thoughts that guided his conversation along. I used to do this as a teacher. My students would follow the conversation and the annotations, but could make no sense of them once the conversation was finished. I used to call this my “chicken scratch”. In context, it was highly meaningful. But out of context, illegible.
He scribbled down about six different chemotherapy regimes. I wanted to know why he had advocated one over all of the others. His explanations were clear and detailed and backed up with studies. The best toxic mess regime for me will be six cycles at three week intervals. For the first three I will be having a combination of three drugs refered to as FEC, then the last three will be Taxotere. Each drug attacks cancer differently. There will also be steroids that will blow me up like a puffer fish and loads and loads of other drugs such as heavy duty anti-nausea drugs and drugs that are self injected to promote the movement of white blood cells out of my bones. All of this was to start on Thursday, but was moved back another five days to Tuesday because of gastro. I am going to look like a hot little mess in the coming months. Bald and bloated. Bring it on!
He then said “There is something I need to discuss with you, I am going on study leave for six months at the end of this week.” Crash! No more dating for us. Sigh… So I asked him where he was going and what he was studying. “Italy to study breast cancer” he replied. My internal dialogue is saying bastard! So I blurt out “I hear they have great food and coffee in Italy!” It occurred to me that with four and a half months of chemo, then surgery back in Melbourne I probably wont be seeing him again. So I disappointedly said “You will miss my whole treatment.” He laughed and said, “No, you will be coming to see me for years with your hormone therapy that will last from 5 to possibly 10 years.” I replied with a little giggle… “Oh, ours is going to be quite a long relationship then isn’t it?” We laughed. He assured me that his replacement was a fantastic oncologist who happens to be a woman. I like women. I wonder what sort of shoes she will wear?
By chance on the same day I got to meet the Giant again so the genetics stuff is all a go. Seven vials of blood later, my genetics will be tested. This test is being fast tracked because the results could indicate a slightly different chemo regime if I come back as having a postive result for the BRCA 1/2 gene mutations, it would add another 6 weeks onto my chemo. Unfortunately, Miss Red Lips was not present at this meeting, but she sent me a lovely handwritten note in the mail with her contact details. How special and much easier to stalk now!
Mr Cool and I also went and had a discussion with the radiotherapists during the week. This was to ascertain if radio will be required or not. The benefits of post masectomy radiation therapy for someone like me, young and with a multifocal aggressive cancer are not documented in scientific studies, that means, the survival gains in statistical terms aren’t really known or are only small when pitted against the risks associated with radiotherapy. The list of side effects is quite long. Some radiotherapists feel it is not worth it. The Supremo trial is presently collecting data on whether there are any benefits for post mastectomy radio for women under forty. But results wont be known for years. So certainly I’ll have to do more research in that regard. I want to throw everything at this disease. I don’t want it to reoccur locally. There is likely to be breast tissue cells left in my chest, sitting alongside my new tissue expander. They could take off as cancer again, so that is why radio is used to sterilise any cancer cells that are left. Unfortunately, radiotherapy has on occasion caused chest wall cancers, lung cancers, liver cancers and damage to the heart, which if i was 60, might not be such a serious concern since I might be 75 by the time there is an issue. But I am 38 and have a lot of years left to live. To fry or not to fry: that is the question.
Frustratingly, when I went into this meeting I thought the medicos would have all the stats and there would be a definitive answer around what would be best for me. But it is not clear cut, the “survival advantage” of post mastectomy radiotherapy is not known. “Survival advantage” I really don’t like that term. Statistically, I will be 73 to 84 percent likely to be alive in five years. I was never good at mathematics. But I do know that having a 27 percent chance of being dead in five years scares the bejesus out of me. I’ve always been a glass half empty kind of girl. But I’m working on changing that! A way of looking at treatment is having chemotherapy reduces the chance of the cancer coming back by 40 percent. Hormone therapy such as Tamoxifen which I will have for many, many years reduces the chance of recurrence by another 40 percent. Radiotherapy might only give me an extra two percent. At least I have plenty of time to decide with chemo, another mastectomy and sentinel node biopsy still yet to get endure. Can’t wait to catch up with my surgeon again!
Then on Thursday I had the pleasure of encountering Crazy Echocardiogram Lady. My oncologist sent me to get an Echocardiogram to make sure my heart is strong enough to withstand the chemo drugs and to provide a baseline of my heart before treatment commences. This seemingly easy diagnostic procedure has by far been the most uncomfortable of all that I have encountered. Perhaps even eclipsing the mammograms and nuclear tests I have had to endure.
Crazy Echocardiogram Lady looked at me through her Coke bottle lenses. She asked me a question in the most awesome Asian/Australian accent and then shouted “Stop talking I cannot concentrate!”
Some other pearlers throughout the diagnostic evaluation were…
“Take your clothes off, the top half, put your stuff there, no not there, I will trip over it.”
“Move your body towards me. No shoulder back, no move body closer, no not that far. Lift your arm higher. Higher! Higher! Why you no lift your arm?
“Your scar tissue is bad. Much worse than last time you had one of these tests.” I made the mistake of trying to explain that I’ve had two surgeries since February, but she cut me off with “Stop talking, I need to focus!” And then… “I cannot get good images, scar tissue and the expander is making ultrasound pictures blurry. I’m going to have to really dig. So tell me if it hurts okay?”
The digging almost went through to China! But I said nothing. I wanted clear pictures of my heart dammit!
Another Crazy Echocardiogram Lady quote worth mentioning was… “Oh it’s so, so hot in here!” While frantically flapping the colar of her shirt and then “Are you cold? Can I get you blanket? Are you hot? Gee it’s stuffy in here!”
But the winner was… “I am not comfortable I need another chair” in spite of me obviously being the most uncomfortable I had been in my life, laying bare chested on the slab with my useless arm stretched further than physically possible after having the lymph nodes removed and with a cording complication. Midway through the test she jumped up and rolled her chair out through a door. And not just any door. One of those types that has an excruciatingly slow automatic closing mechanism. This exposed me to all of the technicians in the adjacent room who were sitting at their computer screens. Bare chested and with mangled arm twisted above my head, I counted at least ten seconds of humiliation when she exited, and then another ten when she came back with her new more comfortable chair.
I left my traumatic echocardiogram experience, and excitedly spoke on the phone to my guru forensic pathologist friend who came to my town to complete a morning autopsy at my hospital. As you do! Breakfast, autopsy, morning tea. It has been nine years since we caught up. Where has the time gone? Every girl should have a forensic pathologist as a friend. These people are really smart. And they have a really dry sense of humour. If you die as a result of a crime they will carve you up to get to the truth. My friend is way more attractive than Dr. Gunther von Hagens which by the way used to be one of my favourite documentaries back in my morbid fascination days. She said she would pick me up and we could have a quick cafe stop between my appointments. I’m busier and popular now that I have a chronic disease!
I excitedly stood on the street corner outside the hospital wondering what sort of car would she drive. As a forensic pathologist it would have to be black. Maybe a Jeep? Maybe a Merc or something? No, likely to be associated with her employment. It might need to carry a body. (I kid, I kid) Maybe a van with all the windows blacked out. I was racking my brain through all of those episodes of CSI and NCIS that Mr Cool had made me endure. When her car arrived, I jumped in and we started laughing. I asked her if it smells to dissect the deceased. Like a true professional she gave little away, so I had a secret sniff of the car to see if there were any lingering remnants. All I could smell was her lovely perfume.
Interestingly, my friend had always known that this was what she wanted to do when we were at school and she was barely 17. (I still don’t know what I want to do with my life over 20 years later). This was a long time before any of these crime shows appeared on television and everyone became armchair forensic experts. I am able to solve every crime on TV. It’s really easy. Seriously though, forensic profiling had only just hit Australia in 1988 and disaster victim identification was in its early stage as well. She was already talking about cutting up dead people and pursuing a career in forensic pathology way back in the early 1990’s and she finally did it after some time working as a doctor in hospitals and bucket loads of further study. Apparently the living aren’t as exciting. I’m putting it on the record that if I ever die from a crime, (Suffer again cancer), I want my friend to carve me up to get to the truth. Though I hope she doesn’t record things like… “Deceased is very well nourished”, which I once saw Dr Gunter do with respect to a female corpse who was a bit chunky.
It was so great to catch up with her after many years. I admitted to being fiercely jealous of her when she arrived at my primary school as the new girl in 1985. She had older sisters, which I didn’t have. She was cool. She had matching pastel pink capri pants, pink anklet socks and a pink ribbon in her hair. I think she also had that complete outfit in baby doll blue and maybe even canary yellow. She also had some plastic frypan earrings with a little fried egg in them. Her skills on the monkey bars were also amazing and she could run fast. She was so cool that she called her Mum by her first name. Many years later, I still credit her with teaching me how to be studious. But her awesomely wry sense of humour connected us and it hasn’t changed. She still laughs at the silly things I say after all these years.
Oh and she was driving a black 4wd. American owned, but of the Australian made variety.