Is it old news to do a post responding to Angelina’s brave announcement last week?
You can imagine how many people have asked me my thoughts on this. I appreciate your interest, and I think it’s great how much dialogue Angelina’s words have sparked. I could have done without the narrow-minded, withering and smarmy responses to Angelina’s announcement that popped up periodically on Facebook, but then, the haters will always hate, won’t they?
So what do I think?
That Angelina is a brave and strong woman, and that she deserves our respect. Bringing this complicated subject in to the public eye can only be a good thing.
(There’s always a but…).
What worries me, coming at this from the less fortunate side of the bilateral mastectomy debate, is that a good news story like this can over-simplify the subject matter a little.
Just in case you’ve only recently started reading my blog, a quick refresher on my experiences thus far.
Last June, after a woefully slow diagnosis process, I was found to have an invasive ductal carcinoma underneath my right nipple. It was roughly the size of a twenty-cent coin (that’s a bit bigger than a quarter, my USA friends…). At my doctor’s advice, I underwent genetic testing, and found that I carried the BRCA2 gene mutation.
After some consideration, I decided to undergo a bilateral mastectomy – prophylactic on my left, removing the cancer on my right. I had no choice but to lose my nipples – one was already affected by the cancer, and from my perspective, any remaining breast tissue wasn’t worth the risk. I didn’t have enough spare tissue (eg a tubby tummy) for a natural tissue reconstruction, so I had the first stage of my breast reconstruction along with my initial surgery, just as Angelina did.
In the weeks following the surgery, I was really quite happy with the aesthetic result. Sure, I didn’t have nipples, but I did have rapidly expanding breasts, which was good fun. They were also gravity defying. Bonus.
Unfortunately, there were also tiny amounts of cancer found in my right lymph node. This meant that I had to start chemo before my final reconstructive surgery (the point where the expanders are replaced by silicon implants). I was assured that it was fine to keep the expanders in for the six months or so of chemo.
Sadly, it was not the case. My left breast developed a bad infection. It took months before it was correctly diagnosed as cellulitis (the bug responsible was called Pseudomonis) and by that point, the infection had also spread across my chest wall to my right breast. I was in terrible pain, and it took three additional surgeries, three week-long hospital stays, and five weeks of IV antibiotics (and the end of chemo) before the infection was finally banished.
The day they removed my left implant was absolutely heart-breaking. Ditto the day they removed my right implant. For months following I couldn’t look at my naked body in the mirror. I couldn’t bear to see the long ragged scars, the loose flab where my beautiful breasts used to be.
It’s still really hard. While I’ve now grown accustomed to my breast-less torso, at certain moments I’m suddenly abruptly reminded of how different I am from other women. I’m too scared to get a massage or a spa treatment because I don’t want to have to explain why I have no breasts. At the gym and the swimming pool, I now get changed in a toilet cubicle because I don’t want myself or anyone else feeling uncomfortable or awkward. For months I even tried hiding my scars from my own partner. It’s still many months before I can start again and embark on two more major surgeries to hopefully get my breasts back.
But what does this have to do with Angelina?
What she’s proposing avoids most of this nastiness. By having the bilateral mastectomy preventatively, you can usually keep the nipples. They go a good way towards hiding the nasty scars. And being healthy throughout the reconstruction (rather than immune suppressed while undergoing chemo) means that the chance of infection is very small.
Here’s the interesting part. When I was debating the bilateral mastectomy, I was debating it on largely aesthetic grounds. It’s human nature to view it that way. But the thing is that having a bilateral mastectomy has a much, much deeper impact than purely aesthetic.
Let’s not beat around the bush here. Mastectomy is a pretty word for what is actually an amputation. Along with the breast tissue that is scraped out from the chest area go the nerves as well.
Over the months, the nerve endings try to repair themselves. A lack of sensation turns to strange dull pins-and-needles. Sometimes it feels like two phantom breasts are hanging off my chest. The lack of sensation extends right around to the start of my back, which feels quite painful to the touch.
It’s easy to say so what, you don’t need breasts. But actually, psychologically, I say you do. Without going into gory detail, breasts form an important part of a woman’s sexual physiology. It’s in this context that I miss them the most. I actually feel like less of a woman without them.
Will having fake, reconstructed breasts help reduce this? Maybe. But it won’t bring the sensation back. Those new breasts will never be completely part of me.
Looking back on those difficult days leading up to my mastectomy, I wish that someone had told me to really feel how it was to have breasts, and to remember that feeling. But everyone was too busy telling me how great my new breasts would look.
Right now, with my ravaged flat chest, do I most want the appearance of my breasts to return? No. I want the sensation to return. I want my chest to feel like it belongs to me again. I would be interested to know whether in six months time, Angelina feels the same way.
I’m not saying bilateral mastectomies are a bad thing. They’re a life saver. And I commend any woman with the strength to go through with it, particularly prophylactically.
But I just want the dialogue to go deeper than it was three months of discomfort but then I popped out the other end with great breasts – the end.
It’s just not that simple.
And we’re doing women a disservice if we make it out to be that simple.
This is my honest opinion. Please respect it for what it is – an opinion. I don’t know if my experience is typical, good, bad, middling, but it’s worth sharing. I hope it may prove of assistance to someone making what is possibly the hardest decision of a lifetime.
All my love, as always.
Postscript: As per always, Scorchy has posted some incredibly insightful comments on this topic. Definitely worth a read.
Every year it gets a little harder to answer when someone asks what I’d like for Christmas. I guess that’s what getting older does, every year you need a little less. Well, this year, I had no answers at all. Having cancer, and being in the midst of chemo, is one big want killer. All I could say, when anyone asked, was Have you got a time machine to take me forward by three months so I can finish chemo?
After my reaction to the Taxol, which it seems was a fully blown anaphylaxis, I was left awkwardly hanging there. My oncologist showed new depths, both of emotion and also professionalism, by taking a week to consult with her peers and weigh up all my options. It was an uncomfortable week, but an important one.
And at its end came some staggering news, which you’ll all cheer about, but I have to admit left me feeling a bit… lost?
The final decision was to end my chemo early. Three months early. My Christmas time machine had arrived. No more Taxol. No more Red Devil. No more anti nausea drugs, no more laxatives. Instead, a little white pill named Tamoxifen.
A little white pill that will be my daily companion for the next five years.
I knew that hormone therapy awaited me. That when chemo was over, that I’d be taking a little pill that blocked the estrogen receptors of all the cells travelling around my body, and that would mean that I’d need to be kept in a state of early menopause for five years. I knew it, I did, but I filed it in my bulging later folder.
And suddenly it was staring me in the face, and I was in the Survival Phase.
Another consideration pushed the decision to end the chemo. My friend the elephant. He’d made it clear that he wasn’t leaving me as long as I was on chemo. My body was… is… too weak to fight elephants right now. Taking me off chemo gives me a fighting chance to kick the cellulitis once and for all.
So, simultaneous to the arrival of the time machine, was the arrival of the Baxter Bottle. The Baxter Bottle is attached to my chest, via my port, and will be delivering me IV antibiotics 24/7 for the next six weeks. This saves me having to be in hospital (big hurrah indeed!) but means I must carry a bag or wear a bum bag (fanny pack for my American friends) at all times to hold my bottle. I have some interesting tubes hanging out of me, which draw stares when I’m in public.
But that wasn’t all that happened prior to Christmas.
We also had a call from the IVF clinic. The genetic testing on our three Judes was complete. And two out of three Judes carry the bad cancer gene.
It’s a lot to take in.
So I must apologise for my extended silence. I’ve been thinking, and reeling, and trying to readjust to having been whisked three months in to the future.
I know the news is good, provided the cancer stays away. And I know that compared to chemo, Tamoxifen should be a walk in the park. So why am I feeling like I’ve just been sent out to sea in a leaky boat?
I guess this is what happens when the future sneaks up on you. This next week or two I’ll let it all sink in, and then take stock and see where I am.
Stay with me. Merry Christmas and happy new year to you and yours…
Ginger cakes for all the lovely folk at St Vincents and the Kinghorn Cancer Centre.
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.
It’s been a week now since surgery. I kept trying to write sooner, but honestly I didn’t have it in me.
On Thursday, I was released from hospital in yet another comedy of errors.
Both the oncologist and surgeon agreed that I could go home from hospital, but neither actually informed the hospital of their intentions. I was meant to have chemo as an inpatient before being released, so I spent Thursday in a state of increasing hysteria as hospital life went on as per usual, with no sign of chemo or any indication that I would be discharged from hospital.
It was 3pm by the time I figured out that the hospital hadn’t heard that I was to be discharged. It turned out that they were awaiting a bed on the chemo level so that they could transfer me and my treatment would continue as an inpatient, with me staying on in hospital.
I hit the roof.
You can’t tell someone they’re going home from hospital and then say “oops, no, you’re just getting some chemo in a whole new ward and staying on” and expect it to go A-OK.
Anyway, to cut a long story short (I’m boring me), I was in my new hospital bed for a whole three hours before successfully escaping the hospital and returning home.
I think with all my hospital rabble rousing and hysteria I gave a close family member the impression that I wasn’t just planning on skipping the hospital, but my chemo and future treatment and future livelihood as well.
Let me assure you that if I decide to skip out on my treatment, I won’t be returning home to Darlinghurst, five minutes away from the fricking hospital.
I will be booking a one way ticket to deepest, darkest Africa, or maybe sun kissed Mauritius and you will be hearing nothing from me. Not a thing.
So here’s where I’m at.
I’m bald. Really really really really bald. The shaved head was cool. It had street cred. My new mannequin head is not cool at all. It’s freaky. I’ve been looking at it for a week now and it’s still freaky.
I’m also nauseous, and exhausted. The latest round of chemo really hit hard. Evidently the last round was insufficiently vile and so they upped the dose (true).
I also only have one breast. So any remaining body confidence I had is now a distant memory.
The chemo also brings with it depression, so I’ve been alternating tears and rages, favoring the tears. Pity, because I actually think rages are probably more fun, but I’m just not really the raging type.
Cancer, you’ve really got me now.
I honestly spent a week trying to figure out a positive way to present this, on this, my happy blog.
But the simple truth is, sometimes you just have to say it like it is and say yes it sucks.
I managed to avoid the cancer feeling for a really long time. I was diagnosed on June 8. I had the bilateral mastectomy on August 8. I went through IVF and then started chemo, and then lost my third breast on October 8. So really I’ve done pretty well to go this long before going and now I really feel like I have cancer.
Superficial I know, but I think it was the baldness. That’s the point where I ceased to even feel comfortable in my own home. I keep a hat on standby at all times in case someone comes to the door and avoid open windows on to the street.
So, in response to the concern that I might run for my bloody life, all I can say is, it’s too late. I had ample time in the first four months to bolt when I was healthy(ish) and looked like everyone else.
No, I’m here, and hanging in here.
The side effects of round two are lessening now. Hopefully within another few days I’ll be back on my feet properly.
I’m sure I’ll get my head around the hat/wig/scarf thing as well, but I think it’ll take some time.
Currently I’m shunning the scarf thing because it looks too cancer. It sounded like a great idea in theory but in practice I just look tiny headed and sick. The wig is pretty hot, and as it’s headed for summer here I’m not sure I should get too dependent on it.
It seems that caps and hats are the go, so I’ll be building my collection rapidly.
I’ll also need to get myself a fake tit (charming) which I’m sure will make for an interesting blog post.
So bear with me. Allow me my space to whinge and mourn and tell the truth and I’m sure things will be on the improve soon.
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.
31 July 2012
I’ve never been much of a winner in games of chance. I’ve won a raffle precisely once.I don’t even know how to buy a lottery ticket. But I certainly know how to stand out from the crowd in the great genetic lottery.
Yesterday I received the result of my genetic test, and I am the proud owner of a BRCA2 Gene Mutation. This makes me quite distinguished among my fellow Ashkenazis, where only 1.4% of us can boast this mutation, and even more extraordinary among the rest of the populace, who are 5 times even less likely than the Ashkenazis of carrying this very special gene.
Envy me not, however, because as those of you who have been following along and taking notes will know, the reward for having this gene is a bilateral mastectomy.
My very kind and talented brother (no sarcasm whatsoever by the way) plotted my likelihood of getting a second breast cancer and also ovarian cancer on a rate chart to aid interpretation, and it’s a doozy. If you like a chart (I know I do), it’s attached for your viewing pleasure. To summarise, I have an 84% of getting another breast cancer by the time I’m 80. The ovarian cancer risk thankfully doesn’t kick in properly until after 50, so once again I’m putting this issue aside to deal with in a less stress-filled part of my life.
It sounds strange, but finding out that I had this crappy gene actually has made the decision making easier, not harder. I spent two uncomfortable weeks talking around whether or not I should get a bilateral mastectomy, and then this friendly little mutation popped up and made the decision for me.
What makes me sorrier is that now that I’ve been found to have this gene, it is fairly likely that my brother and cousins could also carry it. While a knowledge of this could better prepare and prevent them from getting associated cancers (prostate for the men) it’s still a horrible thing to uncover. What a dirty business this truly is.
The meeting with the genetic team was quickly followed by a catch-up with Dr S. Thanks goodness, he and Dr M (the plastic surgeon) have locked in a date for surgery, next Wednesday, the 8th of the 8th. I believe that 8 is a lucky number for the Chinese, is it not? Bring me luck, 8.8.12!
So, now surgery is approaching rapidly. I’m pleased it’s coming, as it’s horrible knowing that there’s a malignant growth inside of me. I want this intruder out, out, out!
There have been tears, of course, almost always at the worst possible moments. But I’m hanging in there.
Stay with me…
Lots of love.
July 17 2012
In the next instalment of this highly-paced melodrama, we get to talk genetic testing and boob shopping!
Now I know what you’re thinking… “Boo to the genetic testing – I want to hear about the boob shopping!” but bear with me, I think that the genetic factor is quite interesting too.
Yesterday I met with Professor S, the resident expert on all things gene-related, and a lovely counsellor named Louise. We were there to talk about whether I qualified for a government-sponsored gene test, something which normally costs in the region of $5000. Louise drew an amazing family tree (reminiscent of Year 8 Biology, for those who remember drawing hereditary trees… or whatever they’re called) as Anna and I rattled off the plethora of exciting things my relatives and ancestors had died of over the years.
It seemed that on sheer number of cancer cases in the family alone I qualified for the gene test (well… whoopee!). Louise was there to provide counselling for what I am sure is a troubling time for many. The thing is, normally the people who come for gene testing don’t actually have cancer yet. They’re people who are worried about cancer striking, often because of a strong family history. It’s a big decision… because even if you find you have The Breast Cancer Genes (catchily named BRCA1 and BRCA2) it doesn’t mean you’ll necessarily get cancer. And plus apparently only about 10% of the people tested are found to have the gene (and many people who get breast cancer don’t have the gene). And if you do have the gene, the booby prize (ho ho) is a bilateral mastectomy, possibly with the bonus removal of your ovaries (more on that later). Personally, if it were me, and things were normal… I wouldn’t have that test.
From my perspective, by contrast, just two weeks post-breast cancer diagnosis, the genetic testing was interesting but not stressful. After all, I already know I have to lose a breast, possibly two, and possibly my ovaries to boot. So I think I surprised the counsellor with my zen reaction to the whole thing. I was pretty delighted just to be in a medical appointment where they didn’t shoot my nipple with a biopsy gun… or inject me with radioactive dye… or make me drink a litre of iodine… or cut off my breast!
So it was with a song in my heart and a spring in my step (OK, slight exaggeration) that I took my Very Expensive $5000 Genetic Testing Cardboard Box off to the blood donation guys and gave up a few more vials of the precious red stuff.
Results come in a fortnight, which is very fast by genetic testing standards. It normally would take five to six weeks.
OK, now the boob shopping. “Hooray!!!” says everyone.
This morning, Charlie and I met with Dr M the plastic surgeon. When I think plastic surgeon I imagine some greasy gel-haired snake oil salesman, dripping in gold and leering at my breasts, possibly mouthing “sweetheart, you can do so much better”. Dr M was nothing like this. Phew.
7:30am is a strange time to shop for new boobs, but we soon got into the swing of it. We talked implants. We felt implants. We talked doing two breasts versus one. He checked out my stomach and back for possible tissue harvesting. We established that I am too thin to be harvested for more than the smallest single breast reconstruction. I don’t know whether to be gratified or disappointed in myself, actually.
I am reassured that at the end of this, I might just have a very nice pair of breasts to remember it all by. The finest that the medical fraternity can offer me in fact. As to my final decision as to whether I go two breasts, or just one, you’ll just have to wait for another email to find out.
And now we wait again. We wait for the results of the gene tests. We wait to speak with Dr S again. And we wait for Dr S and Dr M to find a nice long time-slot when they can operate together.
And… oh yes, ovaries… It turns out that if I have the breast cancer genes, I may be a high risk factor for ovarian cancer as well. But fear not, even if that’s the case, I don’t need to start worrying for another ten years or so… by which point I’ll have had the opportunity to pop out a kid or two, with any luck. Strangely enough, this rates very low on my list of concerns right now.
And that, friends, is the state of the nation.
I’m sorry if I’ve been slow to answer your texts or emails, it’s been more due to a case of the flu than a case of cancer! You’ve all been so attentive that I’m beginning to feel like some D-List celebrity.
Lots of love…