Nobody thought to tell Saskia that I also owned an elephant. The poor hound didn’t expect to be sharing a bedroom with a creature that wanders muttering around the house at night, keeping a drug diary and microwaving heat packs at 4:20am.
It’s done wonders for her toilet training though, as the three of us mosey around the courtyard three or four times throughout the night, my bald head twinkling in the moonlight, all in relatively good humour considering the situation.
And then I had to have a colonoscopy and endoscopy as well. I keep having blood transfusions, and then the red blood cells vanish, leaving me gasping for air within about three weeks. Has the elephant developed a taste for red blood cells? The oncologist thought that maybe the red blood cells were going missing because of an ulcer or internal bleeding, but nothing became apparent despite the battery of tests.
At the height of the special colonoscopy diet, Saskia had the pleasure of watching me sip laxatives, clear beef soup, green jelly and icy poles all at the same time (5:36am!), and then bolt for the bathroom. Only a puppy can love you at a moment like that. She would drape herself languidly on an abandoned pile of pyjamas and patiently wait until I returned from the bathroom, wagging her tail delightedly. I love you the most right now she would happily wriggle. I just love being near you! I love you the most at 5:36am with the runs! I can barely contain my love…
Can you tell why I love her right back? Love love love you too, Saskia!
As the nurse’s (and thus my own) fear rapidly escalated re the elephant, my surgeon as usual fluctuated wildly between totally deadpan You’re fine. Purple is a fine colour for skin. Pus is positive. And what’s wrong with eating hardcore pain meds like they’re M&Ms? and spontaneously over reactive Can you come in at 12:45pm for emergency surgery, and can you start fasting… Umm… Now?
My answers, by the way… Purple is not nice. Pus is not fun. And hardcore pain meds not working anymore is just plain scary. And painful! and While I am already fasting, it is for a colonoscopy, and no you will not be spontaneously performing emergency surgery on me this afternoon. Besides, I have nothing left to operate on!
(Sorry, my true believing friends, I truly don’t intend to mock, but I can’t find a more accurate way to express my frustration and sadness.)
So today I left Saskia chewing on an oversized lamb shank and walked the elephant to hospital.
We were due for my first round of twelve weekly doses of Taxol, but first I had to work my way through three fat bags of B+ blood with my name on them. Transfusions are slow. They drip drip drip away, and I was entertained first by my dad keeping me company, and then dozing in a recliner, trying to recover from several weeks of elephant filled dreams. Sleepy and uneventful, I’d call it.
And then six hours in, the Infectious Disease Registrar turns up. She is the Elephant Specialist at long last! Can she teach me how to kick this bloody cellulitis? Please please please?
Then as I’m deep into giving her my medical history, something strange happens. I can’t breathe. I can’t think. I can’t remember what I’ve said, or am saying, and I’m scared but even more scared to admit something is going terribly wrong. I feel very faint and I feel very strange, can you call a nurse?
Not one nurse pours in, but eight or ten. It turns out that they started giving me my Taxol six minutes earlier, and they’d been standing by in case of anaphylaxic shock. Apparently, my chest turned red and rashy over a few seconds. Like magic the nurses injected me with cortisone, were on to me with blood pressure monitors and were holding my hand and stroking my back as I sobbed and tried to breathe.
Have I just become another bad statistic? Again? Seriously?
Everything that happens after that is blurry. I’m given something called Phenurgan and it makes me pleasantly sleepy. The poor Elephant Specialist stands well back, shamefaced, as though her case history caused me to have a near death experience, and quietly asks if she can photograph the elephant and show it to her supervisor.
There is a lot of quiet chat, and I gather that I’m not getting my Taxol today. I’m not getting an elephant cure today either. And I just lie back in my recliner and wait to be taken home to my bad puppy who loves me any old time.
Love you all as well. Even at 5:36am. Even when it’s raining.
I’m beginning to realise that this journey of mine is going to take a little longer than expected. At first, when I had a funny lump in my breast, I thought… That’s OK, it’ll take half a day to go and get the ultrasound.
And then when the lump turned out to be cancer and I met my surgeon for the first time, he said to me… You give me six months and I’ll give you the rest of your life. And I thought… Yep, six months is OK.
And then, I waited two months for the surgery. And four weeks for IVF and recovery. And then I was told I’d need six months for chemo. So… nine months… that’s OK too… I thought.
And then the cellulitis kicked in, and my breast reconstruction had to be undone, and I once again lost my left breast and then my right. And I realised that after chemo was done I’d have to take time out to heal, and then start the breast reconstruction all over again. So… one year then?
Then I really started thinking. About what happens after I finish chemo… When my reconstruction is completed for the second time. What then?
In the early stages of breast cancer, everything happens so quickly. IVF in particular was surreal, because it took me in the course of three weeks from the 30 year-old who’d filed children in the “Later” category to the cancer patient desperately fighting to freeze an embryo or two, safe out of chemo’s reach and preferably not carrying the bad cancer gene to boot. Suddenly, I theoretically had three cracks, maximum, of conceiving a child in the future with my DNA.
But then, as I was getting my most recent chemo, I realised something. Something that I guess I knew in my heart of hearts the whole time. It was a landmark chemo. My fourth AC cycle. I’d never have to see the Red Devil again. Hell, I’d never be able to see the Red Devil again. Six doses is where serious risk of coronary arrest kicks in. It marked the halfway point for chemo. A landmark of sorts.
It should have been means for celebration, but I suddenly started thinking… What then?
When this is all over, the real waiting begins. The waiting to see if the cancer will come back. The waiting to see if my body will come back out of chemo-induced menopause. Some doctors say you should wait five years before contemplating starting a family, because the implications of having a kid and the cancer coming back, it’s too horrible to contemplate.
While my peers are having babies, I’ll be waiting, waiting, waiting for some sign that things are going to be OK, long term.
And it’s sad, this change in perspective. It feels like the final thing the cancer takes away from you is your chance to plan, build and dream.
So in the midst of all the surgery, and the chemo, and the cellulitis, I decided that it was time to invest in something for the future. To stop being so fatalistic… pessimistic and say… Screw you, cancer. I’m enjoying the here and now, and you can’t get me here. This is the one place you can never get me.
So we adopted a puppy.
A big-pawed, blonde, mystery-hound, Heinz 57 Varieties sort of a puppy. And I named her Saskia, which means “Protector of mankind”. Which is expecting a lot of a creature who still can’t stand and scratch herself at the same time, but I think she’s up for the job, long-term.
And when we go out, Saskia and I, I forget that I’m skinny and pale and bald and weak, and just become a regular human being again. People don’t notice my strange hats, or at least they don’t ask, because they’re too busy patting my small(ish) golden hound.
My protector. The protector of my future. Meet Saskia. She’s delighted to meet you too.
This is one very weird new world I’ve found myself in.
A world where, while everything around me has stayed the same, I’m simply not the same person you saw a week ago.
I’ve aged. My skin is grey and I have black bags under my eyes. I’m suddenly weirdly thin and gaunt looking, and I’m really not the thin and gaunt type. My face and torso are covered in tiny, angry looking pustules. My hands shake and I’m hunched, because my back and chest just won’t stop aching.
Last night, I was admitted to hospital, because I suddenly got a fever that raged up past 38 degrees and then up past 39 as well. I should’ve seen it coming when I climbed a flight of stairs and felt like I was going to be sick when I couldn’t catch my breath.
I was slow to react because I simply couldn’t believe that a healthy 30 year-old could turn into a frail old lady in a week.
Thankfully, I was out of the hospital a bit before midnight. After a whole lot of blood tests, a urine sample and a chest x-ray, the hospital decided that I wasn’t in complete immune collapse and that it was probably a passing virus that had just decided to pop by to say hi.
Apparently the Australian government won’t let me get a white-cell booster shot to perk up my immune system until I prove my immune system is compromised. I’m hoping this is proof enough?
I’m really hoping things will pick up soon. Maybe I’ll meet the Scarecrow, or the Tin Man, or the Mayor of Munchkin City might give me the key to the city or something. I’d like to think that eventually Chemo World might feel a little more like Normal World, even just for a few weeks here and there.
Thanks again for all the lovely emails and comments. I think this post might explain my lack of personal responses to all you lovely people. Be assured that it’s wonderful knowing you’re out there.
Ah, bless your cotton socks WordPress… I wrote up a whole post earlier on my iPhone while I was at the hospital and then it didn’t save the draft! This will probably be a pale imitation of the lost first version but c’est la vie and all that…
Let me recreate the scene for you. I was sitting in HOAC in St Vincent’s which stands for Haematology something something something waiting for something vile called a “chemo induction”. Doesn’t that just give you that first day of school feeling to the factor of a million? Well, before the induction even started I had gotten a taste of what was to come because I was surrounded by some very upset chemo patients who had been waiting over four hours for their treatment. The next time you are waiting for your bus, dentist, dinner, whatever, spare a thought for those poor souls! They just looked so tired and beaten and pissed off! I was pleased they looked pissed off, at least it means they still have some feistiness in them which can only be good.
Hanging in HOAC was like an episode of Cheers for me… First my breast reconstruction surgeon came by and then all my breast cancer nurses and I could only be amused by how quickly something really weird like a cancer department can become something so mundane and comfortable. Good to know, really.
But anyway, I digress, because this is not a chemo post but rather an IVF one. Nine days ago Chez Nic and Charlie was hit by Hurricane IVF and all the delightful things it brings… Like eskies filled with syringes and mountains of consent forms and whole Pandora’s Boxes of ethical dilemmas the likes of which we’d never imagined until now.
I had been warned of such horrors as immense fluid retention, horrifically swollen ovaries the size of peaches and faux pregnant bellies minus the happy endings but it really wasn’t that bad. I had one hormonal outburst lasting roughly one hour on day two and then settled happily into being some crazy human incubator without further complaint.
The early morning blood tests and ultrasounds were rather hard to get excited about, save for counting my rapidly expanding egg follicles and marveling at how effortlessly my body had swung in to mega fertility mode.
I just described to you what a chemo waiting room is like… now let’s talk about an IVF clinic waiting room in the early morning. Strangely, the IVF waiting room is way more high stress. The official uniform is jeans and a grimace and eye contact is strictly off limits. It’s sort of like a battery farm for women and not a good place for making friends. I think I’ll pick the chemo ward as my preferred place to hang here on in. Both offer free tea and coffee (yay!).
So… Nine days of injecting myself in the stomach later (and by the by, future diabetics, it’s really not that bad, just so you know…) we were all go for egg harvesting.
Again we’d been told some nasty tales around this but regardless I was adamant that I was going to be awake for it. Having just had general anaesthetic I didn’t feel like repeating the performance and plus, how often do you get to see your future children literally sucked from your ovaries via an oversized syringe?
It was absolutely fine. Because I just sense you love gory details, I’ll give you an idea of how it all works. Basically they insert a probe (imagine a dildo which happens to be an ultrasound device) and they use it to guide a very, very, very long needle up into the ovaries. The needle is so long (maybe 30cm) that it sways alarmingly in the breeze. Sensation is pretty minimal, certainly when compared to the pain of a breast reconstruction anyway. They use the needle to suck the fluid out of each egg follicle one-by-one and then release it into a test tube. It is truly remarkable how much liquid is involved.
Full marks to Charlie for his general optimism and engagement throughout as I suspect it was yuckier from his angle. At one point the syringe got blocked and he declared that to be his personal highlight, which I think illustrates his growing appreciation of gore.
Definitely my highlight was watching the scientist locate the eggs one by one and show us on a screen. They harvested six eggs in total, of which four appeared mature, but then they delighted us by all being successfully fertilised over night! So we now have six potential future babies growing away in the lab, fingers crossed that they survive the crucial next five days!
For those already aware of our future baby’s name, you’ll not be surprised that I’ve named the little cell balls Jude 1 through 6. (Hi Grandma Jude! Hope you’re honored, not disgusted?).
We now face the conundrum of genetic testing the embryos. This is one almighty can of worms. Basically Judes 1-6 have a 50:50 chance of inheriting my bad cancer gene which is not good odds, but if they test positive to having the gene we can never have them implanted. This is like a bad game of genetic poker. Right now I’m not sure how we’ll play our cards, it depends on how many Judes make it to the genetic testing stage. So this is a to-be-continued scenario I’m afraid… And thus the subject of a future post.
So there we have it. IVF is over. We have six cell balls all named Jude. I’m all inducted and ready for chemo. And so life marches on in its weird wonderful way.
Much love to you all…
The thing I wasn’t prepared for with whole cancer thing was the waiting. Waiting for the biopsy, waiting for the results, waiting to meet the surgeon, waiting for the gene test, waiting for the surgery. It’s now been two months since I first went to the doctor to talk about a lump I’d found under my nipple, and still I’m waiting.
I’m currently sitting outside one of 1000 admission desks in St Vincent’s, waiting. I’m not even sure what I’m waiting for any more.
Today is my pre-admission day. It’s involved a lot of paperwork, and even more injections. I was quite excited to revisit my friends down in Nuclear Medicine this morning, but it wasn’t nearly as fun as last time. This time, I was injected four times in each breast, 8 needles in total. And it HURT. For the first time in all of this, I shed a tear. I really try not to show weakness during the various procedures, but my poor breasts have been through so much at this point!
The test was a fascinating one, however. The nuclear dye injected into my breasts then travelled to various sentinel nodes, tracing a path that the surgeons will follow tomorrow. This shows how the cancer cells could theoretically travel through the breasts and tells the surgeon which nodes to remove for biopsy. I now have numbers written all over my chest in permanent texta- I’ll get Charlie to take photos later.
I feel better about the fact that until this morning I had no idea where my ‘nodes’ were- it turns out they can be just about anywhere!
This is a steady process of letting go- letting go of my dignity, letting go of my breasts, letting go of my control.
On the weekend, being the good sculpture student that I am, Charlie and I made a plaster mould of my breasts. This was Charlie’s idea, and one that I really love. When all this is over, I’m going to get my beloved breasts cast in bronze… A dignified end for them I think.
So that’s mostly it really, waiting waiting waiting. Trying not to develop a needle phobia. Saying goodbye to my breasts. Yep, thanks for the mammories….
July 9 2012
Hi all (again),
Fear not, this is not an epic like last time (much).
I just got home from my day of staging tests at St Vincents, and Lucie the dog whimpers nervously whenever I get too close to her which just confirms my suspicion that I’m now radioactive. Coincidentally, Lucie also appears to be one of those “cancer sniffing dogs” that tabloid TV regularly tells us about. She’s been sniffing my offending breast for some weeks now preferentially to all other body parts, so be afraid if you come to visit and she pays a part of you too much attention.
So anyway, the day started with my arm getting injected with radioactive dye. I was warned to stay away from babies and pregnant women and sent off on my way. After sending off five vials of blood for testing, I returned home to do my tax return (tax is curiously comforting right now).
Several hours later, after lunch with Charlie, I returned to St Vincents for my bone scan, which was done in an amazing giant piece of equipment named Discovery. In my limited understanding of all things technological it seemed practically identical to the now defunct Russian space station. I was duly impressed, particularly at the amazing instant skeleton renderings it produced (Carla, you would love them – I’ll see if I can get some copies for you).
After a phone call to Charlie declaring that staging tests were much more interesting and enjoyable than I’d expected, I headed off for my CT scan. This was when I discovered that my fun was to come to an end and I’d have to drink one litre of iodine solution. Nasty.
While the CT scan itself was harmless enough, the drip (also filled with radioactive dye) had an alarming side effect where (ahem) I felt like I was wetting myself when in fact I was not (huge relief there).
Staging tests over, the radioactive human pincushion returned home to the newly suspicious dog. Hopefully the green glow fades before tomorrow when I return to work.
Results Friday, unless the surgeon is delayed…
Lots of love.
July 7 2012
I’ve got to say that it feels awfully strange sending a group email on a topic such as this. I must apologise if this feels insufficiently personal or tailored to each one of you very special people, but I’ve decided that this is the best way to keep all my nearests and dearests updated on the goings on.
I’d also like to apologise for the very dreadful pun in the email subject. I have a feeling that it’s the first of many. Anything remotely humorous around this subject is appealing to me greatly right now. I think I’m finally beginning to understand black humour.
If you don’t enjoy long medical-related emails, just ask me to unsubscribe you and I’ll try not to get offended! (And obviously, please no “reply alls”!).
So here we go then.
Yesterday I met with the breast surgeon Dr S for the first time. He’s a really lovely man. Very warm, open and good at explaining everything in a refreshingly unmedical way. After a quick physical examination (oh, how quickly my right breast has ceased to feel like mine, I think it already belongs to the medical profession!) he sat me down and told me very simply and thoroughly where we are today and what is to come from here.
Basically, I have a malignant tumour sitting beneath my right nipple. Unfortunately because of its location, my right nipple’s days are numbered. Good surgery is all about getting clean margins (10mm minimum on all sides of the tumour) and that’s just not possible given the location of my nipple. On the surgery front, I have three options.
– The first is what they call a “lumpectomy” – where they remove the lump, nipple and another 10mm on all sides. This would need to be followed by radiotherapy – 5 minutes of radiation, 5 days a week for 6 weeks (30 treatments in total). I could do this before or after work. The main side effect is a bit like sunburn. Apparently my breast will/would feel like a medium steak for about five years afterwards. This surgery is pretty low-key, I’d only be in hospital for one night.
– The second is a mastectomy, where they remove the complete breast, which means they can basically guarantee clean margins, something that they can’t do with a lumpectomy. This option removes the need for radiotherapy. For a mastectomy, I’ll be in hospital five days.
– The third option is what they call a hybrid option. It’s a mastectomy with a breast reconstruction, nipple reconstruction with areola tattooing optional!
Personally, I don’t quite see the second option as an option. No breast, no way.
However having just googled “nipple reconstruction” (and don’t by the way, it’s gross) I’m not 100% convinced by nipple reconstruction either.
Anyway, early days. I have time to weigh the options up. Currently I’m leaning towards option 3.
Now here’s where we get all scientific. Apparently because I have Ashkenazi heritage there are two genes that give a massively increased risk of breast cancer. At some point I’ll need to get genetic testing to see if I fall into that territory. If I do, my poor left breast may be for the high jump as well. But let’s not worry about that right now – I’m putting that into the “later” category.
In the “now” category, I need to get checked out for secondaries. On Monday I get a Bone Scan, CT scan and blood tests. It’s very unlikely that the cancer has spread, but this is due diligence because if it has, I will need chemo before surgery. They will also test whether the cancer has spread to my lymph nodes prior to surgery.
Assuming that this is not the case (and let’s go with that… I’m very much an optimist) I will probably go for surgery in the few weeks. The lump will be sent to a lab and they’ll see if the margins are all clear.
Then we need to consider chemo. Unfortunately (or perhaps fortunately) because I’m relatively young, it seems that chemo is pretty much recommended. It’s just too much of a risk that nasty cancer cells could be floating around inside of me plotting their next attack, and my surgeon is trying to promise me a good 55 years more living from here so it pays to think aggressively. I can’t argue with this approach!
Chemo is a whole other ball game, and thankfully not something that needs to be front and centre of mind right now. Once again, it’s been filed in the “later” category.
Now… this is a whole lot to take in. Writing this email feels like good therapy, it makes everything clearer in my head when I write it down. Thanks to every one of you for being so supportive already. I’ve really appreciated the company, flowers, emails, texts and calls. It’s a very great comfort knowing that I’m surrounded by such lovely people.
I’m also really, really grateful that I live in an age where cancer research and treatment is so advanced and sophisticated, and in a country where excellent medical care is accessible and available. There was a rainbow over Darlinghurst yesterday morning and I have selfishly claimed it all for myself. It’s definitely my omen.
Lots of love.