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.
When devising this blog post I toyed with going all high-brow-lit on you and doing a spin on Waiting for Godot where two protagonists talk back and forth beneath a tree and Chemo never shows up. Confused much?
I think it could be a hard read so I’ll give you the Readers Digest version instead.
So, the two protagonists are Charlie and I and, naturally enough, we have Chemo filling in for Godot. While we didn’t stay beneath a tree, talking back and forth, we did talk in a wide variety of other locations.
Location 1: The bus
Where Niccola declares that everything is terrible and the world is mocking her and look at all the shiny happy people on the beautiful spring day and why oh why do I have to do bloody chemo how unfair is that??? (Lack of punctuation more accurately recreates Niccola’s mono-whinge style).
Location 2: The IVF clinic
Where Charles gets his back up about the three remaining Judes. (Oops… update… there are now three very healthy SuperJude embryos safely frozen. Sadly the the other three Judes weren’t made of such stern stuff. We salute them all for their efforts.). We prepare to wage war on the IVF clinic but find that we’ve created sufficient waves within the clinic that the clinic has announced special dispensation for us. If all SuperJudes are found to carry the bad gene we now have permission to use them regardless. Small cheer!
Location 3: David Jones
Where Charles and Niccola pretend to be normal people for half an hour, seamlessly integrating back into the non-medical community and buying pants for Charles. They talk pants.
Location 4: The Wig Shop
Where Charles and Niccola seamlessly integrate back into the medical community and continue shopping, this time for a wig for Niccola. Niccola has a delightful time trying on wigs that enable her to fluidly move between personas including Jewish Princess, Double Bay Lady Who Lunches, and Tuckshop Lady. Luckily it just so happens that there is a Niccola wig just hanging out looking cool, knowing it’ll get there in the end. And the moment it finds its way on to Niccola’s head it’s the one. The best possible Niccola wig that a Niccola could have. I think you’ll love it. But I won’t ruin the surprise – let’s see if you can tell my new wig apart from my (soon to happen) new haircut… I’m hoping to get a lot of “what a great haircut!” comments…
Location 5: Back at home
Where Niccola freaks out again “I don’t want to eat I need to sleep I don’t want to eat I’m not allowed to sleep I’d better eat huh???”
Location 6: The Hospital Pharmacy
Where Niccola and Charles make their second failed attempt at picking up the suppositories Niccola was prescribed for nausea. Apparently there’s been a real run on suppositories. A real run on suppositories? Niccola figures that if everyone else is so damn excited about suppositories they’re welcome to them and decides to try again tomorrow.
Location 7: HOAC (AKA Home of Chemo)
Where Niccola pops her first three chemo pills, erring on the generous side dose-wise with the one with anti-anxiety properties (Good idea! Clever girl!). She briefly wonders if these are Alice kind of pills and that perhaps she might get very big or very small? She doesn’t. Niccola is escorted to her EZ Boy recliner and everyone admires the Port (ah yes, the Port… must post about that!). They plug Niccola in and give her more anti-nausea meds, this time straight into her chest. So streamlined and futuristic! (Must experiment with attempting to contact the Mothership via the Port later.).
But seriously where the hell is Chemo?
Location 8: Still HOAC
Ah. Just as protagonist Charles has left the building to go and do some real work, Chemo shows up. Ha ha, Charles may not believe me when I tell him Chemo really does exist. I thought that Chemo was some freaky robotic type guy who gave you brain freeze and made everything taste metallic but I was wrong! Who knew? It turns out that Mr Chemo number 1 (we in the cancer business call him “A”) actually looks like red cordial and hangs around in a really big syringe. In he goes. Niccola waits for another Alice moment – will she meet the smoking caterpillar? No, she will not. She will meet Mr Chemo number 2 instead (we call him “C”). “C” doesn’t look like anything at all. He just hangs, all cool and standoffish on the drip stand. No Alice moments this time either. Not even singing daisies? Seriously?
Location 9: Still HOAC
Charles returns, and there is no remaining evidence that “A” and “C” even existed. Still quite possibly a figment of Niccola’s imagination. They leave.
Location 10: Back at home
Niccola waits expectantly for signs of the Chemo, entertaining herself by writing a very poor Readers Digest version of Waiting For Godot. The only sign? Aha. Niccola’s urine is now red cordial coloured. Aren’t you glad I shared? Yep. I know. Don’t thank me…
So… yep… that’s about it really. Return to your regular programming, people… Let’s hope it continues to be this non-eventful over the next three days…
I’d like to introduce you to another mythical creature I’ve become acquainted with over the past few months. He’s called a Dilemma. He’s got shaggy brown wavy hair, long curled horns and wears a perpetually bemused expression. He sort of looks like a yak crossed with a bear, if you can imagine such a thing.
The Dilemma has been following me around since this whole business started. We chatted a lot when I was waiting to hear whether I carried the nasty breast cancer gene. “I think I’ll get both breasts off…” I would begin. “But is that really necessary?” the Dilemma would reply. “After all, you might really miss that breast… you could use it for breast feeding!”. “Yes, but I’d always be scared the cancer would come back!” I’d protest. “But what if you got a pair of Frankenboobs and they never felt like yours?” the Dilemma would thoughtfully reply.
When I found I had The Gene, the Dilemma politely stepped aside. “I stand corrected”, he declared. The Dilemma is nothing if not a gentlemen.
I was a little surprised that when we first visited the IVF clinic, the Dilemma was waiting there as well, thumbing through issues of Men’s Health magazines and eating too many complimentary biscuits.
“Hello Dilemma. It’s been a while. What brings you to these parts?”. “Oh, I thought I’d drop by. You weren’t planning on freezing any embryos behind my back, were you?”.
The Dilemma had a point. With all of science and technology at our disposal, we were hardly going to take the old-fashioned approach with this IVF business. If we had just one crack at getting some healthy embryos happening pre- my extremely premature chemo-related menopause, we had might as well know whether they carried the Bad Cancer Gene while we were at it. It all sounded pretty straightforward. Expensive, but straightforward.
The plan was that at the five-day mark (give or take), the clever IVF scientists would take a few cells from the placentas of Judes 1-6 and test them, both at a chromosonal level, and also at a DNA level for the Bad Cancer Gene. In a year or two we’d come along and pluck whichever Jude was considered healthiest and Bad Cancer Gene free from the freezer and introduce them to my post-chemo uterus.
Sounds simple, huh? “Ask the Clever Scientist about what happens to the embryos that have the Bad Cancer Gene…” whispers the Dilemma to Charlie. “What happens to the embryos that carry the Bad Cancer Gene?” asks Charlie.
“We can’t let you implant any embryo that is found to carry a bad mutation.”. The Clever Scientist’s response feels a little glib given the circumstances. “But given that I have no other chance at IVF – that these embryos are quite possibly the only children I’ll ever have… It sort of feels like I’m limiting my chances rather if I can’t implant any embryo that carries the gene…”. “Then maybe you shouldn’t test for the gene…” the Clever Scientist replies. The Dilemma nods sagely.
We leave the clinic with the Dilemma sauntering along behind us, sniffing garbage bins and tripping over passers-by.
Over the next few weeks, the Dilemma is with me 24/7. “But there’s a 50% chance that I’ll pass on the gene! What if there are only three embryos?” I whine. “That’s not good odds…”. The Dilemma is not an optimist, it seems.
We discuss every possible alternative. Not testing the embryos for the gene at all. Testing half the embryos for the gene. Only implanting the male embryos so that even if they carry the gene it’s not so life-threatening. I hate the thought of knowingly endangering my unborn children with a renegade gene. I feel worse about the thought of not having any children at all for fear of a renegade gene.
Then the Dilemma, Charlie and I get mutinous. “If there’s no legislation the Big Bad Paternalistic IVF Clinic can’t stop us from implanting our Bad Gene carrying embryos…” “We’ll fight them on the beaches…” “You can take our DNA but you’ll never take our freedom!!!”.
We attend a lecture by a couple of Genetics heavyweights and hijack the debate for our own means. Australia’s finest minds confirm that the Clinic have no right to dictate what we can and can’t do with our unborn children. We warn the Clinic that there’s a fight on their hands.
And through all of this, in a quiet lab, Judes 1-6 continue to grow in their petri dishes.
After much mental unrest, I feel ready to make my position clear. I will never, ever, knowingly implant a Jude that carries the Bad Cancer Gene if there is a healthy Bad Gene free Jude available. But I will not be told by a profit-making organisation what I can and cannot do with my embryos. And if the choice is between implanting a Jude with a Bad Gene and not having a Jude at all, I’ll be having my Jude. The Bad Cancer Gene is not a death sentence and it’s not a childhood disorder. It’s simply not a strong enough reason not to bring a life into a world.
And with that, I show the Dilemma the door. He ties up his possessions in a red spotted handkerchief and hits the road. When he reaches the corner he looks back and says “You’re doing the right thing, you know”.
“Thank you, Dilemma, I believe I am”.
Three Judes have now been successfully biopsied and are safe in the freezer, and three more continue to grow. Regardless of their genetic outcome, I promise faithfully that none will be discriminated against because of an organisation’s arbitrary interpretation of a non-law.
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…
Dear Bad Cancer Gene,
You have lurked in my genome and tortured my family for generations. You gave my grandmother breast cancer in her 30s, and again in her 80s. You gave my father prostate cancer. And now you’ve come knocking at my door.
You’ve taken away my breasts. You’ve instilled in me a deep fear of my own mortality that I doubt I’ll ever be able to shake. You’ll take away my hair and my health within weeks.
You’re forcing me, age 30, to pay $15,000* to undergo IVF when I’ve never even had the chance to conceive a child naturally. And IVF sucks, by the way.
Well, Bad Cancer Gene, the buck stops here and now.
You’ve pissed me off, and you’ve taken over my life, and I will now do everything in my power to make sure that no future generation will ever have to deal with you.
Despite massive ethical reservations, I will fork out the cash to throw every possible genetic test at my future unborn children so that they will be born free of you and the curse you bring.
I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy my children.
And you will know I am Niccola when I lay my vengeance upon you.**
It’s on, Bad Cancer Gene. Oh, it’s on…
*Another big shout out to Medicare, who’ll give me about $7,000 back, theoretically. And by me I mean us, I’m not alone in this investment…
** Apologies Ezekiel 25:17 and Pulp Fiction.
No rest for the wicked, as they say.
On Thursday, one week after my surgery, I was back at the hospital for Round Two. Now that the surgery is (semi) behind me, save for two drains hanging out of my armpits and a rapidly expanding pair of breasts, it was time to talk chemo.
I think I mentioned before the surgery that as well as removing (and replacing) two breasts, Dr S was going to do something called a lymphodectomy. As I understand it, and prepare yourself for some seriously half-baked biology here, the lymph nodes transport debris, fluid and anything else that isn’t in the bloodstream around the body.
The way cancer spreads is through the lymph nodes. The doctors call the lymph nodes closest to the cancer the sentinel nodes, and the best way to find out if the cancer has spread to them is to cut them open and look at them under a microscope.
If they find any cancer there, they remove more nodes.
Which is what happened with me. They found some cancer cells in my first sentinel nodes so made the decision to remove all the nodes in my right armpit. This is not ideal, as if you lose all your lymph nodes from one side you can develop something called lymphedema, which is a swollen arm. Let’s hope this doesn’t happen, but if it does, well it’s still a hell of a lot better than cancer.
So anyway, now we know a whole lot more than we did before surgery. The tumour and all the nodes went off to the lab and thankfully it was confirmed that the cancer had only travelled to the first sentinel node, and the others were all clear.
Which brings us to chemo, and Prof E, the latest member of my cancer fighting squad. Prof E is an oncologist, and it’s her job to wage chemical war on my body. Prof E is a straight shooting kind of woman. She didn’t mince words, and within minutes we were very clear on a few things.
Firstly, we have a chemo plan, and it will start soon. It would be starting next week, if not for one other rather pressing issue, which I’ll get to soon.
The chemo consist of two phases, each three months in duration. The first treatment is called AC (they are abbreviations of drug names, feel free to google if you’re curious). AC is delivered through IV (drip) one day every 21 days, over four cycles. Apparently nausea and vomiting isn’t generally too much of an issue (touch wood) but fatigue is, particularly on days 4 and 5 after treatment.
Prof E also told me, almost to the day, when I’ll lose my hair (yep… as suspected), which is about two days before cycle two starts. So I guess it’s time to start thinking about getting my hair cut short so it’s not such a shock when it happens.
The second treatment phase is called T, which is delivered once every 7 days for 12 cycles. Apparently T tends to take any hair that remains, including eyelashes, eyebrows, and (ahem) everything else, which at least means hair removal won’t be necessary for a while!
It’s a lot to take in, but that’s only the superficial side effects.
The biggest risk through all of this is infertility. At some point my ovaries will just switch off, and there’s a good chance that they won’t switch back on again. Which means if we want kids, it’s time for some hasty IVF.
We’re only allowed one cycle, because the chemo needs to start and also the estrogen-heavy IVF drugs are just what my estrogen positive cancer likes to eat most.
As Prof E so aptly put it, there’s no point worrying about fertility if you’re dead, so basically there’s no use ruminating about this one. Fingers crossed we can freeze a few embryos before chemo begins, but if we can’t… Well I guess there’ll be a lot of lucky rescue greyhounds in our future…
So on Friday we started the whole fertility journey, just as a bonus. I’ve got to admit I’m all blogged out right now but I’ll update you next week on this, right now it’s just a stack more blood tests, ultrasounds etc to figure out the likelihood of a successful egg harvest. We’ll know next Friday if it’s worth giving this a shot or just going straight to chemo.
Sounds like Monopoly doesn’t it? “Go directly to chemo. Do not pass go, and do not collect $200”.
Again, a whole lot of you have sent me some really amazing emails. And I’ve been crap and not responded. My defence is that I’m really tired, and still on some heavy pain meds, and my arms hurt, and every two hours I get a call from the hospital checking if I’m ok, which makes me wonder if there should be more wailing and gnashing of teeth going on? I’ll try to write more soon…