Thursday, October 01, 2009
Meltdown
1) I pick my nose. A lot. During a second date 100 years ago in Dunedin, Mr X asked me to stop picking my nose. No subtle hint or joke to disguise his bald command. "Stop picking your nose" he said. If I knew then that he would ditch me two days before Christmas I might have told him to stick his cheap offer to split the bill up his jacksie and flicked my booger at him as I stomped away. But of course, I didn't know, so I murmured something timid like 'sorry, it won't ever happen again, please don't go, I'm a really lovely person, honest'.
I get that nose picking is socially unacceptable. Nobody does it on the bus. Some people try it in their cars. Difficult on a bicycle, impossible on a scooter. Trouble is, it's such a pleasure. Tell me I'm wrong.
2) I interrupt people when they are talking. A lot. Trouble is, most times what I want to say is much much more important and interesting than the boring thing they are taking too long to say. Which doesn't make it okay. But it does explain why I had to keep interrupting the lovely doctor I saw today. "First, when treating cancer, we need to address your nutrition and supplementation and Sue (Levin, my potions guru) has that sorted for you. Second, you need to address your emotional issues. When you're ready you might like to think about unresolved conflict, stress, anger and built up resentment that might have caused your body to turn on itself. Thirdly we need to rebuild your immune system. Ask yourself, why your body has failed you by letting the cancer grow. Consider environmental factors. And lastly, you might not be ready for it yet but you might like to think about some one on one movement therapy whereby you are taken through a series of movements that can heal your organs and internal systems." Guess where I was ready to interrupt? Emotional issues? Moi? If I didn't before, I do now. Movement therapy? Only one of us would make it out of the room alive.
3) I am just a teensy bit tired of this. Not a lot. Just a teensy teensy tiny bit. Trouble is, I know it makes better reading when I'm SuperSach taking on the world but the truth is this afternoon I had a Memphis Meltdown. You see, after the doctor I went to the wig place and chose my new hairdo, I went to the fake boob shop and bought a fake boob and fake boob bra and fake boob togs and as I drove away a brand new thought struck me. Like a bolt from blue it pierced my consciousness and once it was in, it got stuck on repeat. I will never be the same again. I will never be the same again, I will never be the same again.
I know that my life will be better. I'll be stronger mentally and physically and I'm truly lucky to be experiencing the support and love of a wonderful community of family and friends. But I really loved my old life and the only thing I'm afraid of is not getting it back.
How long will it be before I'm not that 'lady who had cancer'? I don't care about the cosmetics; they are just manifestations of the internal carnage. But what if the good Doctor is right? What if my way of coping with life, which I thought was serving me so well, has contributed to my illness?
Two fabulous things came out of my meltdown. As I was lying in bed late this afternoon with tears rolling down my cheeks, I waited for C to comfort me with words of wisdom.
Me: "I haven't been on holiday, everyone else is going on holiday, I didn't get to go to Holland and San Francisco with M and V, I'm not going to Raglan for Christmas, I'll never be the same again, I miss our children, where's my Mum?, I killed that poor little mouse right here beside my bed, the poor little mouse whose cousins died for my Herceptin......"
C: "Shall I go and get us some fish and chips then?"
You may think I'm taking the piss. But this approach is what I love so much about my husband. He knew that words are trite and useless, whereas action and crumbed blue cod are often the answer to life's problems.
And the second wonderful source of encouragement and hope came from the girls in my book club. I told them about the good doctor and his thoughts around the reasons and causes for cancer. Two of my friends thought he might be on to something and three said 'bollocks, what a load of shit'. Perfect. We had a rational debate, with plenty of 'on the one hand' and 'furthermore's, followed by lots of laughter washed down by delicious burnt cake and red wine for them and Earl Grey tea for me.
I'd like to pick my nose right now. Chemo makes it bleed all the time, and my entire right nostril, like my tongue and uvula (sounds ruder than it is - it's safe to google Grandpop!) is covered in ulcer like sores. But for now, I won't. I mean you're here, aren't you? And I don't want you to dump me two days before Christmas.
Friday, September 25, 2009
Mistletoe and whine
Sunday, September 20, 2009
Warts and all
Thursday morning, bright and early Mum, P and I pootled over to Burwood Hospital to have the suspicious lesion on my back checked out. Mr Plastic Surgeon was delighted to tell me that it looks totally benign, 'common in elderly people, not usually seen in someone as young as you - we call them senile warts'.
In my old life it was really easy to catalogue the awful things that have been said to me, but these days it takes something truly morbid to even get my attention. When you're having chemo your internal radar gets recalibrated. It's hard to summons the energy to care about anything except that which really matters. Life continues as before but in shades of grey. So being told I had a senile wart? Zero impact. Being confused for Ruth Dyson? Immaterial. Compare me with Ruth Richardson for all I care.
All that has really mattered this weekend is lego. T and I have reorganised the H family lego collection and in the process have rediscovered unique skills that I don't believe get appropriate recognition. No one would think of including them on their CV and yet I think they have what modern career wankers would call 'great cross-over'.
I am the world's undisputed best piece finder. T just has to say 'I need a dark grey 12'er two high with a nobbly jubbly to plug the waga daga into' and bang! I'm there. Surely this is a marketable skill. The ability to see through the mass of plastic and quickly identify the one piece that will do the trick. T is an excellent planner. If the piece we're looking for turns out to have been a casualty of one of the many natural disasters that have befallen us, he can work out whether it's critical or not. 'Don't worry Mum, I've looked ahead, and it won't matter if we use a blue 6er three times with a yellow pole rather than a green 18'. Hire him now.
I've stayed in bed and he has piled the pieces around me and together we've lego'd our way through the weekend. Sorting the pieces into individual colour piles has been strangely calming and provides welcome distraction from the competing internal complaints of chemo.
Next week I'll find out if the other plastics man was right - senile wart or something more sinister? If it's something worse than expected, I'm not afraid. I have three new pirate ships, a Starfighter and two fire-throwing, horse-drawn carriages on my side.
Tuesday, September 15, 2009
Dear Kylie
Did you have to have a mastectomy? I can't see any evidence of the scar in the gorgeous photos of you on your website. How lucky, lucky, lucky are you to have your own website? www.kylie.com. Unfortunately www.sacha.com is already taken by an Austrian reporter who looks heaps like Borat but you can look me up and see our total sisterness on www.sachacoburn.com.
Did I mention that I'm a really good dancer as well. You're probably just a little bit sexier than me when you dance but I am very good at keeping in time and smiling a lot. I read in a women's mag - great articles - that you experienced chemo brain. Same!! The other day I said to my daughter (OMG Kymo, you're an Aunty!), "Remind me to take the ball to get pumped up at the...." and I couldn't remember the word for the place where we take the car to get petrol. It's the same word we use for the buildings on the sides and fronts of houses where people store their golf clubs and tennis rackets which leaves room for only the big car. How was I going to remember to go to that place if I couldn't remember what it was called?
Anyway, you've written a song about it already and it perfectly describes this hazy fuzz of trying to find the word - 'Can't get you out of my head' - the word is in there somewhere but I just can't get it out. See how before you were even diagnosed you were writing songs that would help me? Thanks a mill.
I heard that during your chemo you had a personal chef. That must have been really cool. I understand better than most how hard it is to stay trim during treatment. Did you put on weight? I have got really heavy. Our neighbour wolf whistled at my Mum today thinking it was me in a new white blonde wig. I bet you get quite a few wolf whistles. I guess it runs in our family. It seems rude to write to you and rub in how great my life is compared to yours but I think as we're practically sisters you'll understand that honesty is best and I hope you'll be happy for me. You see K-meister, I have 7 personal chefs. I know, I can hardly believe it myself. This week, every night, a different chef from my local community is knocking up tea for me and my family so I can get some rest during this second cycle of chemo. I am truly blessed. It's a shame that people in Paris where you live in your petit-borgeois apartmente are so French.
Another thing that proves our unbreakable bond is that we are both magnets for hot European men. I don't mean to be mean but I've probably done a bit better than you here because I am actually married. My husband C, is of Italian heritage and his name is Greek. So totally Euro just like Olivier and your new guy.
It's really sad that I didn't have a musical career like you. It hasn't seemed to work out for your other sister Dannii either. But I have been blessed to have 3 wonderful children in my life. I know that you want to have kids too, partly so your kids can say they are my kids cousins. I'm okay with that, because I think anything that helps us survivors survive is good.
OMG - great idea! Why don't you come and live here for a while and get to know my children and I could fill in for you on your latest tour. Your fans wouldn't notice if we went for dim lighting, and my children love all the small creatures of Australia.
I'm spinning around already at the thought.
Mad love, your younger twin
Sach.
PS The word is garage.
Friday, September 11, 2009
For girls eyes only
Until 9.30am this morning I was fugly. Benjamin Button at his worst. Remember the old caps hairdressers used to put on us before bleaching highlights into our hair - I looked like I had one of those on with only 25 individual strands pulled through. Classy.
But then this morning I grew some balls, paid $15 for a haircut and had a number one. Shortest haircut ever both in duration and length of hair remaining.
Now I look like a monk.
Tuesday, September 08, 2009
You give me fever
1. Reflect on all your failures. My top five are: a) failed a ballet exam when I was 13. Mum, my beloved sister K and I were all in bed together when we opened the mail. We all cried. And cried. b) I wasn't the Head Girl or Dux of my high school. c) I left my run a bit late and didn't make it in the Honours program for Law. d) I've never saved more than about $500 in a savings account. e) I was the keynote speaker at a conference in Sweden. Perhaps 1/5 of the audience listened to me while the rest just chatted amongst themselves. In Swedish. Flurgen klurgen murgen skul.
Reflecting on our failures usually always induces a physiological response. My heart rate goes up. I get a sick feeling of dread in my tummy. When you're trying to manufacture a fever this is all good stuff.
2. Reflect on your most embarrassing moments. My top three are a) singing Tracy Chapman's 'Baby Can I Hold you Tonight?" at my 6th form talent quest wearing an ankle length full circle skirt. b) introducing two of my friends to each other by highlighting that they both enjoyed marijuana and waiting for the conversation to take off from there. c) running a training session for Les Mills Auckland personal trainers that started badly and got worse with ever word I spoke.
Even as I type these I get flushed, the hairs of my arms stand up and I would give anything to be able to relive those moments and make different choices. Temperature rising nicely.
3. Reflect on your biggest regrets. My top 3 are: a) I can think of 2 specific instances in my childhood when I knew I was about to be unkind and I kept on going with my hurtful words. b) I wasted way too much time in relationships with guys who just weren't that into me c) I have spent too much time talking and not enough time listening
As you think about your regrets you should really start to churn. A few tears perhaps. Shooting pains and aching joints should begin to manifest. Right about now would be a good time to take your blood pressure and temperature and visit your GP.
For chemo quaffers like me, a temperature of 38 or above means a trip to A & E, so on Friday night to stave off my CDHB withdrawal pains C rushed me in.
What fascinates me though is that if all that negativity and cataloguing of woes can influence the way we feel, and our physiology, then the converse must be true. The NLP crowd and the Tony Robbins disciples are onto something.
Brave, courageous, positive - all words that people have kindly used to describe me in the last few weeks and months. But the first two aren't true. Being brave and courageous is about acting despite fear, and of course I'm not afraid so no valour required. Positive I'll live with but I prefer optimism.
Positivists say 'don't worry, everything will be fine.' Optimists say 'everything will not necessarily be fine. But if I apply all I know and believe about my ability to overcome and tackle each new challenge with a mindset of hope, then I will give myself the best possible chance of success.' I choose everyday to adopt a mindset of hope but the last few days have tested this to its limit.
Of course I didn't induce my fever. It came courtesy of the asymptomatic pneumonia that was lurking undetected in my chest which either came from the aforementioned (w.o.t.w) old geezer, or Ish and Ian and the coughing crowds in the cafe where we had lunch. When your white blood cells get really low (as they do between day 7-10 of any chemo cycle) your body no longer fights disease and so doesn't produce any symptoms of illness to let you know you're unwell. I didn't have a cough, or runny nose, or breathlessness - nada. Just a slight spike in temperature. Normally a person has a neutraphil (white blood cell) count of around 2.0. Being neutrapenic means your count is below 0.5. With chemo this indicates that you've reached your lowest point for immunity, are at your most vulnerable but can look forward to increases every day as your white blood count improves.
When I arrived at A & E they immediately started intravenous antibiotics, took a chest xray and blood tests to check my neutraphils. The results were rushed back - 0.0. Yip, no white blood cells - at all. And so Saturday, Sunday, Monday and half of today were spent in Ward 27 in protective isolation to keep everyone else's potential nasties away from me. I was allowed out of my room to shower in a special bathroom and had to wear a mask to make this 15 metre trip down the corridor. I was on top shelf IV antibiotics. After each dose I had a blood test taken to make sure they hadn't given me too much - these drugs are toxic in high volumes. The area around my portacath, which if you remember has been in less than a week, was swollen and very bruised, the nurses woke me several times through each night to check my vitals, and by this morning I had been injected with needles 17 times since Wednesday.
I don't share this to garner sympathy but so you know that I understand that the hope mindset is sometimes hard to access. On Saturday morning when C brought the children in to see me I wept when they left. "Take me home," I pleaded. "I just want to come home." I couldn't imagine ever having the energy for the things that bring me the greatest joy. My children, singing cheesy songs badly in inappropriate clothes, watching too much golf on TV with C. It all felt too hard. The only thing that enabled me to go beyond the claustrophobic intensity of that little room was a mindset of gratitude. All around me on the ward were people far worse off than me.
Hope, gratitude - whatever it takes. And of course, the heaviness passed. It always does. And now I have another thing to add to my long, long, long list of great achievements. This is my checklist for summoning a fever of self-belief and optimism:
1. Reflect on your achievements. I have far too many to list here now :), but I'm adding 'surviving 4 nights in protective isolation'.
Notice your physiology change. Feel good hormones are released, tension decreases in your pressure zones and you start to smile.
2. Reflect on your most embarrassing moments. Stop taking yourself so seriously and laugh about the ridiculous person you were when those cringe making moments took place. Make a mental note of whether you are still alive. If you are, then these sorry sagas didn't kill you did they?
You should be standing just that little bit taller, shoulders back and ready to roll.
3. Reflect on how lucky you are compared to me. Have you ever been mistaken for Ruth Dyson?
Just after lunch today, Dr Indian Spunkyfeatures from The Far Pavilions gave me the all clear to come home. Mum drove black beauty at the breakneck speed of 50km per hour and whilst looking at the sign that says Sumner, drove me into the curb as we made a left turn. That's 2/2 for rough trips home!
You needn't worry about my hospital withdrawal though. I'm back at MDU at 9am in the morning for my third dose of weekly Herceptin. We'll try the Portacath for the first time and I'll be modelling appropriate infusion fashion. I do hope Santa takes note.
Monday, September 07, 2009
Veins for vampires
Mr Lewis: "I'll run the line from the port over the subclavicular bone around the neckosaurus minor and drop it back into the Kournikovical. I'll have to make an incision on your very large(well compared to the thin red line masquerading on the right) left breast that will leave a permanent scar of about three centimetres. I have two choices of where to make the incision around your neck. This is a mere nick, a bagatelle of a scalpel mark if you will. I can either use your claviconimiscus vein or..."
Me: (silently to self only) I know how this is going to end.
Mr Lewis: ...."I can go for the jugular!"
Drum roll please. How delicious is our language? Poor Mr Lewis had toothache the night before the op. and wasn't up for my lengthy exploration of whether this use was indeed from whence the expression arose. n.t.w I was delighted. The jugular indeed.
I got to have my surgery earlier than planned thanks to some old geezer having pneumonia and being sent home. C picked me up at 4.30 still a bit groggy but at least nicely satiated with roast beef sandwiches, cheese and pineapple sandwiches, 1 bran muffin and a tub of post-op yoghurt.
C is most excellent driver and has most excellent car/truck with turbo and everything. Golly, it goes fast around corners. Has most excellent doors that open very quickly when passenger arrives home and must run inside to donate to the environment, via the local wastewater plant the aforementioned (w.o.t.w) roast beef sandwiches, cheese and pineapple sandwiches, 1 bran muffin and a tub of post-op yoghurt.
'Come up what may' might have been a better song choice.
Clean, green, and filthy
So much so, that when we arrived in Seoul it transpired that P and I had been booked the Royal Suite of our hotel and C was booked in the King's Suite next door. There was much surprise on the face of our host as he discovered that 'you are baby's mother and he is baby's father!' and that consequently we'd rather hoped to sleep in the same suite.
Korea is a big, smoggy city that is immaculately clean, and full of beautifully groomed women and neatly tucked -in men. Culture shock for us hit on return to Auckland Airport. We live in a clean, green beautiful country that is filthy and full of slobalobs mooching around in trackies and baggy sweatshirts. I was embarrassed to be home.
And embarrassed again on Wednesday, when I popped in for my second dose of Herceptin. It gets injected at the Medical Day Unit of Christchurch Hospital along with a raft of other potions, drugs, and blood products, so it's not solely a cancer treatment centre.
The unit is modern thanks to a recent refit and the staff are friendly and efficient. So far, so good. Unfortunately for me, other patients get to go there too. Imagine an oversize living room with all four walls lined with large navy blue leather lazy-boy recliners. Each chair has a coat stand contraption alongside on which the nurses hang the infusions and a small pump device that monitors the dose. When you arrive you simply choose which of the chairs you want to use that day and voila - that's your spot.
For me, this is a nightmare. It means choosing between the loonies you know and the loonies you don't. If you sit next to someone halfway normal you might have to endure their inane conversation or burping or farting or bad breath or lengthy explanations of their particular condition BUT if you decide to gamble and instead sit somewhere else leaving a seat empty beside you, the very next escaped psychonoid that arrives might just pop themselves right next door. The pressure to choose the right chair is immense.
On Wednesday I nearly sat opposite a man with straggly long white hair, missing teeth and a woolly beard. Where's my compassion? He was wearing old trackpants and a black singlet that slung low enough to reveal both nipples, saggy man boobs and a tangled mess of black and white hair growing in every possible direction. Where's my empathy? He started making life difficult for the nurse who was putting his line in. "Take it like a man" she joked. "I'm not a man, I'm just a great big baby" he replied in a pathetic attempt at falsetto. Where's my kindness?
I picked up my bag and chose the spot that was as far away from everyone else as possible. The lady reading 'Everyday with Jesus', the teenager in a terrible state (compassion restored), the 66 year old who regaled the room with stories of how 'everyone tells me I look so much younger than I am. I've just been blessed with good skin'. Good for you honey. The extra weight is helping you too. I have no beef with any of these people. Everyone is just trying to get through, but the sight of Mr Santa's-had-a-bad-decade was not only too much for me. It was way too much for the frail, immaculately groomed Korean women who was wheeled in by her daughter. Why should she, or anyone of us, have had to deal with semi-naked slob features in addition to the stress of the treatment?
This week's dose of Herceptin took only 30 minutes to infuse, after the 45 minutes of trying to find a vein. Two staff members tried it, and after 5 needles in 5 different spots - success.
Pin cushion Coburn, they call me. Portacath, here I come.
Tuesday, September 01, 2009
The write of reply
The question was apparently straightforward.
Pretty simple huh? My answer went something like this:Steve was seen stealing a bicycle. The Police seek your advice on whether or not they can use the following section of the (make believe) Crimes Act to charge him:Theft of a vehicle. It is an offence to steal a car, boat, train, motorbike, yacht or any other vehicle.
Duh! Of course. Yes they can. Any idiot can see that. C'mon, I hope the next assignment will be more challenging. Love from Sacha.
It turned out that we were supposed to bone on for pages and pages espousing all the possible ways of interpreting this piece of pretend legislation. Parliament's intention was to be inferred, mention of 'on the one hand' was compulsory and polysyllabic words evaluating the strengths of one interpretation weighted against another would guarantee a better grade than 'D'. As I had always been prone to do, I'd gone directly past discussion and straight to judgement.
That's why I think everyone should have to do some basic legal training. It teaches you to think. You learn how to evaluate opposing views and consider all the angles of an issue. And you learn pretty quickly how to firmly express an alternative view to the prevailing wisdom. Which is where the 'comments' part of this blog comes in. If you disagree with anything I write, you have the right of reply. Except if you're a technophobe and haven't worked out how to post a comment yet.
Every week I get emails asking for clarifications, disputing points of fact and begging for inclusion. All of these correspondents could comment anytime they wish but in the interests of balanced blogging here's a summary of their feedback:
1. J, from Auckland, who sounds suspiciously like my mother, thinks 'Song to Live by' is misleading. 'You make it seem like all you ever had were failed relationships.' Well, yes, that's because all I ever had were failed relationships. The fact I'm no longer in them is testament to their failure. 'But so many good decent men were always after you Sach.' Well, yes, but when were good and decent men attractive to bad and indecent women like me? Besides which, it's redundant to discuss my dating history. I've been going out with C for 10 years now although lately it's been more staying in.
2. J, from Auckland, who is my father has written almost daily asking for inclusion. 'Some people won't know you even have a father.' Well, yes, they will. Everyone has a dad. While I was at Hotel St. G. Dad was battling his own life-threatening illness and ended up being rushed to Auckland Hospital. His condition is associated with childhood; very rare in adults. His Peter Pan-esque approach to life is inspiring and I promise to share more stories from our many adventures together.
3. A,B,C,D are all former flatmates requesting that I out the 'Everybody Hurts' girl so suspicion can be removed from them. One wrote:
"I read your blog with the girls in my office and we all get a good laugh and even our boss has offered to do our breast exams for us and we had to tell him that jokes like that aren't funny anymore but then we remembered that you want us to laugh so we let him say it and I think one of the girls actually let him do it but I didn't because he already had at last year's Christmas party and he's not my type because he's short. Anyway, I had told hem how we used to flat together and now they all think it was me that played REM all the time but it wasn't because I wasn't even going out with anyone then, let alone breaking up with anyone then, so if you could please just write on your blog that it wasn't me they might stop singing it all the time and telling people who ring up for me that I am just off in the loo having a cry."
4. M, an old friend from my days in Dunedin is scared that his filthy comments will be removed my me. He is right to be afraid. This is a (largely) family show.
5. G,B et al have sent various reports scavenged from dubious sources disputing the links between smoking, obesity and cancer and other illnesses. I sent them back some UFO pictures, and a photo of me and Elvis taken last year.
Monday, August 31, 2009
Songs to live by
Popular music taps the rich vein of everyman in each of us that enables and empowers us to sing along as though the lyrics were the purest expression of our individual souls. "Oh, we're halfway there....." The cheesier the words, the more anthemic the melody, the more likely it is that I'll be singing along with great gusto, just waiting for the bridge into the key change before the third chorus.
When C and I got married last year I suggested the simplest of songs for the stroll down the aisle:
Come what may
I will love you until my dying day
Was it tempting fate do you think? Inviting the uncertainty of a cancer diagnosis and the challenge of treatment? Or just a song that gives voice to the plaintive cry of my heart?
I need a new song now. A popular song that we can all understand and relate to that adequately describes the abject horror of Day 5 of Docetaxel. A song that makes us weep and laugh in equal measure, has a catchy tune and fills us with hope. Here goes:
Docetaxel by Mozart and Coburn
(tune: twinkle twinkle little star)
Docetaxel you're the best
Dealing with my cancer guest
Thank you for the runny poos
Hundreds of trips to our only loo
The aches and pains are really fun
Luckily, it's just begun
Docetaxel you're my friend
When will the constipation end?
Feeling like I might explode
Anything, please, to ease the load
Sweaty palms, a new bald patch
I am really quite a catch
Docetaxel, time to talk
I can barely move or walk
Nobody will believe my scene
Years of being a drama queen
Pounding head, thump, thump, thump
thump, spew, poo, chuck, thump, thump, thump
Docetaxel, you're making me sick
Find the cancer, kill it quick
I welcome you into my house
I want to live, if nothing else
To write another song someday
All about love, come what may.
Tuesday, August 25, 2009
More boring 'c' facts
Supportive care 1 and 2 for Oncology Patients
Ultra Flora Immune
Meta EPA/DHA
Meta Indole-3-Carbinal
Bio Q 150
These aren't designed to kill cancer, although there's some encouraging quasi -science that says some of them might: they're to boost my immune system and they consist of massive of doses of vitmains and other goodies. The % of daily recommended vaules are astonishing:
1000% Vitamin A
500% Vitamin D
4000% Vitamin E
16,666% Vitamin B12
Add these to the new regime of anti-nausea drugs and it's getting up to 40 tabs per day. I know, it's nothing compared to what some are swallowing every day, but I'm used to spouting forth not slurping down.
Walking cliches
So far, I've met fabulous people doing their very best to work within in a 'system' that seems to have been designed in the dark. It's early days so I'll tread very lightly but let's just say that the appointment note I plucked from the mail box today at 4.30pm advising me that chemo starts tomorrow at 10.30am doesn't meet minimum service expectations. Not because it's late notice of a change, but because I have to start steroids 24 hours before the appointment. Do the maths.
Fortunately, for me, my middle name is agitator and on Monday I made a reconnaissance (the surname I was given at birth was Bourne - spot the spy connection) and staked out the two clinics I was due to visit. After going back and forth between the Medical Day Ward and the Oncology Day Ward, heeding the recommendations about which coloured-haired receptionist to bother to direct my enquiries to, I got to the bottom of my chemo and herceptin schedule for this week. When I asked how I would have found out about the changes if I hadn't Jason'ed my way around the building I was told 'everyone gets sent appointment notices in the mail'.
N.t.w - as I write, I'm 'roided up and ready to go!
Wednesday is Docetaxel, and Thursday Herceptin. In the last week I've already had an echocardiogram and E.C.G to establish my normal heart function. If the H starts to damage my heart we'll know by comparing new tests to the baseline. I've had blood tests, been to the dentist and am awaiting an appointment to get a cancerous looking mole taken off my back by the Plastics team. My goal is to visit every hospital department I can.
I saw another walking cliche while waiting for my E.C.G. A man, 45 perhaps, in his hospital pyjamas with pants rolled up to his knees, sports shoes and shoes on when everyone else was barefoot or slippered. An orderly came to take him back to his ward in a wheelchair. "I could run there", the man protested. "It's policy," he was told. I wanted to offer him my 'IN DENIAL' tee shirt I'm planning to wear when I jog to my September tennis lessons.
And so to my most important decision for tomorrow: what to wear? Every combination I think of screams cliche.
Business suit - career bitch who brought it on herself through stress - in denial
Sloppy tracksuit - overworked mother who didn't take care of herself - her fault she got sick
Smart Les Mills gear - fitness freak who obsesses about health - in denial, ha ha
Cocktail dress - drama queen creating a fuss - stick the needle in harder and jiggle it a bit for fun
Fairy ballerina dress - someone call the psych ward!
I've never cared much for how others perceive me. I'm just not sure who I want to be. I've never had to play a chemo patient before.
Tuesday, August 18, 2009
From ballsy to bitter
1) 2 more mice are goneburgered - thanks to the new plastic traps and a personal visit from the aforementioned Arkwright to provide after sales service and practical advice. I don't want everyone in Sumner to expect the same sort of attentive service but it was certainly appreciated. I am blessed to live in a village on the edge of a city. Thanks CM.
2) Mum, J, has returned from her home in Auckland with her suitcase full of retail therapy.
J: "I love this new coat Sachi, but I'm not sure about the colour. What sort of scarf do you think I could wear with it so I look better?"
S: "A balaclava"
Sometimes I surprise even myself with moments of comic brilliance but I share this for two reasons. The first is to introduce you to my Mum who is amazing, and looks stunning. No-one really understands the extent of a mother's love for her child until that love gets challenged to act. And act she has. Mum has taken short term unpaid leave from her work to be available for me. This takes special talent. I am an awful patient. I like to do everything for myself except for all the menial daily tasks that I am capable of doing, but which, just don't seem that important anymore. 'You do the dishes eh Mum?' My humour is blacker than ever and even Mum flinches from time to time.
J: "Are all those tablets you're taking helping ?"
S: "Well, my boob didn't grow back overnight if that's what you mean."
Mum also has the unfortunate job of dealing with P, who loves spending time with Mum but never remembers this. When we drove out to pick Mum up, P said "hello, Nana, when are you going back?" And yesterday during our 'what good ideas did you have today?' talk, P chipped in immediately with "my really good idea is that Nana goes home now". Tell us what you're really thinking sweetheart.
The second reason is to highlight that while I don't feel like I've changed much, I'm conscious that to everyone else I have. M, at work, pats my arm all the time. Like I'm elderly, or mentally impaired. Enough already! Whenever I say something ballsy, people look at me as though I'm bitter. Funny, ha, ha, balaclava, ha ha, isn't as funny because I'm not cute anymore ...I'm a project.
3) Retail therapy rocks. Naturally in order to complete my 'to-do' list I had to buy a few items. Briscoes, The Warehouse, Borders, Kimberleys have all benefited from my rush of activity. It's a bit like nesting. I firmly believe that if, when I first get home from chemo, the pantry is sorted, with everything in glass jars with labels, all will be well. Jacinda worked assiduously :) on Saturday night to revolutionize my pantry. My meagre contribution was to take apart all my old herb and spice packets and fill the brand new containers with lots of lovely smelling herbs, that now all smell the same to me. To this end, I need a volunteer. Anyone who can distinguish between sweet basil, oregano, thyme, rosemary, coriander, cumin and what Jac thinks might be nutmeg is welcome at La Maison D'Moi anytime.
4) My dear friends, F & G, have been supplying delicious meals full of goodness and I have taken healthy eating to new heights. Veges, fruit, whole grains, donated fish of every kind imaginable - almost no sugar, very little dairy and virtually no red meat. Of course, I'm now sick. My body has gone into some kind of anti-toxic toxic shock. Perhaps I hit the good stuff way too hard. I've got laryngitis that I've been told can only be fixed if I don't speak. C is in a state of Nirvana.
It's important that I can speak on Friday so that my oncologist can be confident that I'm ready to boff my first cocktail (fabulous expression stolen from W, my friendly village dentist) as soon as possible. I've been told that I'll be having 3 x 3 weekly cycles of Taxane, 3 x 3 weekly cycles of FEC (find every cancer), weekly Herceptin for 9 weeks and then 3 weekly after that for 12 months. I'll get a port inserted in my chest - another wee day surgery to squeeze in - for ease of drugging, and any decision on radiotherapy will be made after I've got through the chemo.
6) WOW. Watch out world. Today I tried on my first set of wigs. I've always been blessed with beauty as you know, but with a wig of luscious, fake but perfectly styled, holds it shape all day hair I am nothing short of a knock out. I asked if they had pantyhose with week-old stubble I could try. I think it's important to look as much like my old self as possible and seeing as there's only ever one day every six weeks that my legs are smooth (who has time for grooming?) I want to wear hairy tights along with a wig. Minifies didn't have tights quite like that but they did offer to pull apart their werewolf costume set so I could have stick on underarm patches. The tattooed child that served me is my new best friend. I was not brave enough to mention Merkins.
Tomorrow is 'Meeting your new oncology team' day and I'll know a lot more then about what's ahead - and when I have finished working assiduously on the rest of my pre-chemo tasks I'll let you know too.
Friday, August 14, 2009
Of mice and men
There are 47 mice running a circuit between my kitchen cupboards and my bedside cabinet. Two less than yesterday. C embraces sharing of jobs and so chucked one dead mouse out but left 'one for me' to deal with. Not many to go now.
Last night I tentatively climbed into bed at about midnight and calmly begun my now-ritualised meditation. "I am thankful for everything in my life. Especially my husband beside me breathing lightly in through his mouth and out through his nose. I am particularly grateful for sound of the tiny mouse on the other side of me (was he waiting up do you think?) nibbling away at the cheese that's in the trap that's about to slam shut and kill the bloody little bastard. I am thankful that his death will teach him not to lead his entire high school graduation class through a Durham Reel round our room for three nights in a row. I am thankful for mice in general but especially dead, silent, never to chew, gnaw or squeal ever again ever ever ever mice." You get the idea.
And so I'm lying there, semi calmly, waiting for the PING of the trap. Breathing in, breathing out, in perfect harmony with sleepy C, waiting....nibble, nibble, scratch, scratch, giggle, giggle, chortle, chortle.
And so I'm lying there, not really calm at all, allowing myself to feel just a teensy bit tense, listening and waiting....and waiting and listening...now the mouse is just messing with me "Sach" it squeaks, "you're a loser....can't catch me.....mmm, nice cheese, thanks for the peanut butter".
And so I'm not lying there anymore. I leap out of bed, pick up everything that's in cooey of the trap, and throw it all out the back door into the night. No sign of mouse. But lots of important insurance papers, P's birth certificate and one pink slipper now blowing around back garden.
Return to bed. Commotion has upset C. He is now breathing in through nose and out through mouth. Sounds like pipe band calling all available mice to find a partner for the next dance.
What does this have to do with anything? My life learnings can be seen by the steps I've taken since:
1) Bought extra traps and set them up like you might a child's train track on our bedroom floor
This indicates that sometimes in life we have the right plan but we have to increase our level of commitment. Do what you're already doing but bigger, with more conviction.
2) When I subsequently discovered that several of these traps had bait removed but hadn't PINGED, I paused and evaluated.
This indicates that sometimes in life we need to step back and see the big picture before we get too caught up in the detail.
My analysis showed - the plan is good, they like the bait, they know where to find the traps BUT my execution sucks.
This indicates that sometimes we have good ideas but we don't carry them out in an appropriate way, or with the appropriate resources. Don't ditch the ideas, just get your implementation sorted.
3) So I've called my friend and local grocer Chris Milne and left 47 messages, one for each mouse, to let him know that the traps he personally recommended are shit.
This indicates that sometimes you should spend a bit more money to get the plastic traps like you used to have before they melted when you burnt down the kitchen.
Disclaimer: Not all my learnings will apply to every situation.
4) I've got a new strategy. I am staying up all night and will use all the tools in T's spy kit to catch and kill the mice.
This indicates that I never give up. Ever. I am not too proud to ask my children for help. I am not afraid of making a fool of myself (I draw the line at the fake moustache. I'm not sure disguise is necessary, whereas the Spiderman superglue gun is an essential part of my armoury).
I am at war. It has become very personal. The mice are taking the piss. I had hoped that one of my friends might have passed on to the little furries the fact that you know, I have cancer, and right now is not a good time for me.
The risk for me, as with many who are afflicted, is that we look for signs all around us and compete in bizarre rituals in an attempt to 'trick the game'. If I complete the cryptic crossword before 10am that might indicate that today's results will be positive. Not getting a car park right outside my piano lesson is a bad sign. Plainly nonsense, but we're just trying to restore order in a world that has been tipped upside down. The mice are obviously a test. I will not fail.
Wednesday, August 12, 2009
Sejuice me
Of course, I've juiced before. But only ever combinations that evoke warm sunsets over Waikiki - watermelon, pineapples, mango with a hint of lime.
The recipe for my first vegetable cancer crusher came from my Integrative Medical expert, Dr Sue Levin. Her handout on juicing provided some light relief amongst the earnest nutritional reading material that is often confusing and universally bland.
Guidelines for Juicing
...avoid potatoes...
I'm so pleased this was pointed out. How many times a week do you crave a good old potato juice? Driving home from work after an exhausting day I bet there are people all over the country going to the fridge, overlooking the amber gold and instead searching out the finest from Oamaru, or in the poorer neighbourhoods, the very best Pukekohe can grow. "Crack another spud into the juicer would ya cobber?"
..especially with a green tint...
You think?
....as it can cause diarrhoea, vomiting and abdominal pain.
Quite. Although given that cancer causes death I might have put up with the other minor side effects.
So for my first juice I chose:
4 carrots, sprig parsley, touch of mint, handful spinach, 1 beetroot, 1 clove garlic, and the clincher - 1/4 head cabbage.
More Hokitika than Hawaii but highly recommended.
Tuesday, August 11, 2009
Smokin'
The evidence around a whole bunch of cancer-causing stuff is equivocal but the link between smoking and lung, throat and mouth cancers is incontrovertible. So by all means, smoke away. I'll probably stand outside with you in the freezing cold; you usually choose to go out for a ciggie when I'm right in the middle of making a very important point:) If you get cancer I'll be kind and loving and treat you with the same caring overwhelming respect that has been lavished on me. But I won't be happy that your place in the treatment queue might mean that someone like me, or worse, a child, is waiting.
"If you're fat it's your fault." That's me paraphrasing Nigel Latta. Being overweight increases your risk of just about all cancers and almost every other disease. Do yourself a favour and reduce your weight - and my wait. Action is everything - remember?
If I sound like a moaning Minnie, I'm just warming up! In truth you'd better hope that every moaner you know never has their boob removed because once you start with the complaining there's no end of misery. Shooting arm pains, nerves in your back that scream for no reason, the feeling that your veins might stretch and pop right out of your forearm - all good stuff. My approach is to be thankful. It's a little bit Pollyanna, granted, but for every pain I have I give thanks. 'Lucky to still have an arm Sach', I think. 'Some people don't have clothes so be thankful for that nasty chaffing around your wound'.
Cl, my techno wizard at work loaded up my shuffle with post-op music. The wizardry went wonky and I ended up with just the one song to listen to in hospital. For this I was, as ever, thankful. It's cheesy and if Leonard were dead he'd be rolling in his grave. For now I think he just appreciates the money. Alexandra Burke has the voice of an angry angel.
http://www.youtube.com/watch?v=bsuXbkrA_AQ
Hallelujah. Every pain, every ache deserves its own Hallelujah. I'm alive. I'm very cool. And I'm not too fat.
Monday, August 10, 2009
Action is everything
It's tough; mentally draining and physically exhausting. Can you guess what I have to do for the next 10 days?
Nothing.
Turns out that despite the best efforts of my oncologist, the very earliest Christchurch hospital's 'system' can fit me in for my first appointment, and this is not to start treatment, is Friday 21 August. The week after that they might be able to begin the chemo. I feel like a walking time bomb. Having chemo privately doesn't make any difference. So what to do?
Action is everything. I believe this about every aspect of my life so I've made a juicy to-do list and will get on with completing it before next Friday. I will be the best prepared, most vitamin filled, read-up, fit and mentally fierce chemo patient ever - I'm reasonably confident the nurses will hate me.
Friday, August 07, 2009
The Rollercoaster of Results
The bullet hole marks are from the post-op drains and are disappointingly small and normal and healing fine. My wound, so beautiful under the white strip tape is hideous with the tape removed. Think shark bite. Think of opening a can of spaghetti when the first flushes of red seep between the lid and the rim. Mmmmm.....sexy.
But, it's healing perfectly too and I am the picture of good health. Except that I have cancer. Except that possibly I don't. And here's where the results rollercoaster begins. Buckle up, if you can be bothered or just make a note in your diary to check to see if I'm alive in 5 years time.
The pathology report following surgery showed that I actually had 5 lumps. 2 were pre-cancerous and 3 were high grade invasive ductal carcinomas measuring from 1cm to 1.2cm. This is good news. A few small cancers are thought to be better than 1 larger one.
The margins around the cancers were deep - this is good news. It means the cancer has not penetrated into my chest wall. 21 non-sentinel lymph nodes were taken out. 1 had cancer in it. This is bad news. It means the cancer has spread and there is a greater risk that it might be elsewhere in my body. Only 1 had cancer in it. This is good news. It could have been present in more nodes which might indicate a more agressive cancer or one that had spread further before we caught it. Getting a sense of the rollercoaster yet?
Cancer cells sometimes have hormone receptors on them. This makes them vulnerable to particular types of treatment and indicates that they are at least trying to behave somewhat normally. Tests are carried out for two types of hormones (oestrogen and progestorone) and wouldn't you know it, my bloody cells haven't got any intention of behaving normally. They are receptor negative. This is bad news. They won't respond to hormone therapy and so this little potential remedy is off the shopping list. Advances in medicine mean that tests are also conducted now to see if HER2 receptors are present. About 20% of breast cancers have HER2 receptors. This indicates a more aggressive form of cancer. Wouldn't you know it, my cells are aggro little shits and are HER2 positive. This is bad news. It is also good news. It means that Herceptin can be used to give the bastards a good old fashioned hiding.
Loathe as I am to get all political - my voting history is as follows:
Labour for David Lange
National, Act (first MMP election)
Green, Legalise Marijuana Party (a social experiment that didn't quite pan out as I'd hoped)
Green for Rod Donald, National
National, National
Despite being mistaken for Ruth Dyson (more on that a.t.l later), I consider myself to be economically conservative and socially liberal BUT I will forever vote National if Health Minister Tony Ryall's decision to fund Herceptin for 12 months rather than the 9 weeks that Pharmac approved under the Labour government is what keeps me alive until I die.
So, the results from this week indicate that my prognosis is a bit worse than I first told you, but there are still really good odds of me being around for the rest of my life - and still absolutely nothing to worry about. Lance Armstrong was WAY WAY WAY WAY more fucked than me before he began his treatment and look at him go now. I might yet make it to the end of Nayland St on my mountain bike!
So do I still have cancer? Maybe. Maybe not. All the treatment I'll have from here on in is designed to kill any invisible cancer cells that are lurking, unknown and undetectable, in other parts of my body and to prevent the return of the original gremlins. Cancer is a numbers game.
In the very first lecture at Law School we were told that 180 places in second year would be given to the best performing students out of the 500 odd that would sit the final exams. "Too easy" I thought. "That's more than 1 in 3. I only have to be better than two total lepers and I'm in." As it turned out, I did slightly better than that and beat a whole bunch of them. Cancer survivor stats are like that.
"Of 100 women in a similar position, who have all the available treatment, x will be alive in 5 years time and have no recurrence, x will be alive with a recurrence and x will be dead from cancer related illnesses. x will be dead from other causes."
Arrogance is my problem. I'm having trouble imagining how they could ever find 100 women similar to me.
Tuesday, August 04, 2009
Knowing me is great for your health
I know that statistically that doesn't make sense, but surely it appeals to your logic?
If you're in the following groups you are now less likely to get cancer aren't you because it's rare that two people from a small group get diagnosed in close succession:
Ferrymead Bays Football executive committee
Mt Pleasant School Board of Trustees
Coffee Culture Head Office team
Sumner Theatre Group
Les Mills International tribe
EDUC 655
My extended family
Our bridal party
If you don't know me, but wish you did, it's too late. The logic only works if you knew me when I had two boobs.
Seeing as I've got cancer for you, would you mind having a vitamin injection for me?
Helios, the wellness centre that's a little sick
Last week my dear friend M, came to offer moral support at my appointment only to find that I had changed the time without telling her. The reception staff were rude, unhelpful and did nothing to exude the wellness and vitality you might expect. When M asked if they could hold onto a gift she had brought for me until my rescheduled appointment later in the day, one of them put her straight; "we are not a collection agency, I can't guarantee she'll get it, there's nowhere here to put it."
Perhaps if one of them had sat on it, it might have made her smile.
Classic example of the disconnect between the people working really hard to grow a business around core values and the people they employ to answer the phone, meet and greet, and take the money.
And why did M come to meet me?
I hate getting my vitamin injections. The place stinks of old world new-age herbs, the waiting room is full of depressed hippies and on at least three occasions the nurses have referred to my business prowess as though I've got capitalism not cancer. Their obvious belief is that working hard in the pursuit of excellence is what led to the disease.
I'm just waiting for the all-clear so I can offer my hardworking, pursuit of excellence reception training to the lovies on the front desk.