5 August 2012
Hello once again my lovelies,
It’s now three days until I go in to hospital and so I’m getting all my ducks in a row. Don’t you love that expression? I have this vision of there being ducks (and fluffy yellow ducklings) everywhere. It sounds almost as difficult as herding cats… which is possibly actually even more difficult than getting ready to go in to hospital.
But anyway… I digress…
I’ve decided to bite the bullet and move these “boobmails” on to a blog. I hate the thought of spamming my nearests and dearests constantly, and plus I think from here on in, there will probably be more material that can comfortably be fitted into an email. So, it’s time to pop along and sign up for email updates (scroll to the very bottom of the homepage) or alternatively just bookmark me for future reference… or just put the URL under a parental filter… whatever, really…
And before you ask… yes, I did think about calling it Tit and Kabooble, but I thought that it was over-egging it a little and worried that people might think that my blog is of the dirty variety. Which… of course… it is NOT!
Once again, for everyone who has emailed over the past week, I’m so sorry if I haven’t responded personally as yet. It is pretty overwhelming right now and sometimes email winds up at the bottom of the pile. I may be offline for a few days while I’m in hospital, so if you feel like sending some love my way, text messages are your best bet… Ditto if you’re thinking of visiting, please text first. While spontaneity sounds wonderful, I might be a bit traumatised in the first few days so it’d be great if you would check in with me via text first.
Much love, as always…
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…
July 14 2012
A major medical appointment on Friday the 13th didn’t seem like such a great idea, but as breast cancer waits for no-one, I returned to St Vincents yesterday with the whole family in tow to discuss next steps.
The ever charming Dr S didn’t keep us in suspense – there is absolutely nothing else wrong with me. It’s a wonderful feeling to know that while my breast(s)’ days are numbered the rest of me is doing just fine. I have some nice pictures to prove it too.
This means that a clearer picture is building as to what is to follow. Next week I meet with the plastic surgeon to discuss reconstruction options and the genetic specialist to discuss genetic testing. The plastic surgeon will work together with Dr S in surgery – up to eight hours if I use muscle/tissue from another part of my body for the breast reconstruction (the alternative is silicon implants – the surgeon will advise what is best). The genetic specialist should be able to advise whether I need to have both breasts removed now (a bilateral mastectomy) or whether I get to hang on to leftie for a while yet.
Of course, if I get both breasts removed at the same time this is my big opportunity to look like Pamela Anderson… although I must admit that this whole process has made me love my breasts exactly how they are.
Thereafter, I can be scheduled for surgery.
Part of the surgery will involve injecting my lump with dye (probably 24 hours out) and then removing some of my lymph glands. They won’t remove all of them, only about 10, and depending on how many of them the dye has travelled to they can figure out how much chemo I will need. Fingers crossed, precious little…
Before chemo I’ll need to go to a fertility specialist, because chemo can result in early menopause and if I want to have kids in the future I’ll need to have eggs harvested and frozen in case this happens. My IVF friends, I’m warning you that I’ll be plying you with meals and alcohol after the surgery to talk to me more on this front…
Now for the bad taste component. I’ve been thinking about hair loss. Since chemo seems pretty much on the cards now, I’m having to come to terms with the fact that I might lose my hair. The thought of waking up with it sitting like a dead animal on my pillow really freaks me out, so I think if hair loss is on the cards, I should try various short styles along the way… all the styles I haven’t been brave enough to try the rest of my life. Haven’t we all wondered how we would look as a shaved headed monk at some point?
I will also do research into the exciting world of 1960s style scarf turbans. It seems like a good opportunity to purchase the vintage Hermes scarves that have been tempting me in op shops all these years.
So there you go. I’m still making a good fist of seeing the funny and interesting side of it all.
Thanks again for the continued stream of flowers, cards, parcels, wine, calls, emails, texts and smoked duck breast (I’m still giggling).
More in another week or so…
Lots of love.
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.