Category Archives: BRCA1

The details

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This Thursday I’m happy to report that I’m feeling fabulous. In fact I’m feeling better than I have for months or maybe even a year. The poke-your-eye-out tiredness has lifted; I’m perky upon waking in the mornings. So maybe the big bad brothers in the smoked-glass limousine – aka Carboplatin and Paclitaxol – have already given my tumours a good dressing-down. Yes! I can just see those tumours shrinking and cowering, lifting their stranglehold on my internal organs.

In my first blog post about my diagnosis I said I couldn’t bear to hear any details about the size or shape of my tumours. The fact that I had them at all, and their approximate positions, was more than enough information. For a long while I even stayed off Dr Google. Fear trumped curiosity for weeks. But all that’s changed. I’m now able to read the radiologist’s report that Dawn read out to Steve while I blocked my ears. I’ve been reading the results of Google searches (“primary peritoneal cancer prognosis”) without having to peer through the fingers covering my eyes. In other words, I’m getting to know the size and shape and capabilities of my disease.

So, here are some of the details I couldn’t even whisper a while ago. The radiologist’s report says this: “Lying between the left lobe of the liver and the stomach and compressing and displacing the stomach there is a complex cyst like lesion which measure about 110mm in greatest diameter. There is partial extension into the inferior aspect of the left lobe of the liver. There appears to be very slight enhancement of the edges.” After the choppy waters of those three sentences, there’s a bit of smooth sailing: “The liver, gallbladder, pancreas, spleen, adrenals and kidneys all otherwise appear normal.” Normal! What a blessed word! But then we plunge back into the storm: “In the right side of the pelvis in the pouch of Douglas there is a mass about 50mm in diameter.” The radiologist goes on to explain how this is squashing things around in my lower abdomen but mercifully adds that there is “no evidence of intra abdominal or pelvic lymphadenopathy.” Okay, back to Google. The Pouch of Douglas is just a bit of a space down there; lymphadenopathy is all about swollen lymph nodes. As for prognosis, there are some scary stories, but there are some inspiring ones, too.

I’ve been reading about the peritoneum itself – what it is and what it does when it’s working properly. I’m learning all the time, but this is how I visualise it: Imagine a plastic shopping bag full of oranges. Tie it off at the top and put that bag inside another shopping bag. The inner bag is wrapped around the abdominal organs (oranges); the outer bag is the abdominal wall. Both bags, together, make up the peritoneum. Another word for the inner bag is the viscera, as in visceral reaction – feeling something right in the guts. The space between the two bags – actually no real space at all – is called a potential space, because most of the time the inner and outer bits of the peritoneum are rubbing right up against each other, moistened by a tiny amount of fluid so you don’t feel it. The peritoneum, quietly doing its stuff in the background while the more charismatic organs hog the limelight, actually holds the whole shebang together.

I want to get to know more about my threatened peritoneum and the organs it holds. I’m going to do some craft. I’m going round to my friend Karen’s place on Saturday to make a start on a peritoneum (crocheted? knitted? made out of sheer fabric?) and a set of organs (maybe made out of felt). I’ve been inspired by the anatomical craft on Etsy, like this crocheted plush spleen.

Now that I feel better and I’ve had time to assimilate the details, my goal is to get my “R Rating” (a term coined by a friend on Facebook) by Spring. R as in Remission! With my friends Carbo and Taxol and some nice sharp surgeons’ knives, not to mention waves of love and support from family and friends, I think I can get there. Oh, and Medicare. I’ll talk about Medicare next time.

Ignore my last blog post – technical glitch!

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Hello my dear subscribers – there are now more than 7 of you, which is lovely. Hey, just ignore my last little blog post about my poor old grandmother. She did, indeed, have a stroke, and a few months later she passed away – but all this was going on in 2001 and is very old news indeed. I made the mistake of “fiddling” with the past on my blog, thinking I could add bits here and there without having an email notification going out, but this didn’t work. Drat. Now feel silly. Anyway, now that I’m here, I’ll give a little update on how I’m going now: Most excellently! Last Thursday was a post-chemo low point; after that I started feeling much better. I now feel more or less “normal” and I’m lapping it up! Tx

First chemo

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Last week I decided I’d update this blog on Thursdays, no matter what, unless I was physically unable to do it. It’s Thursday again, so this is my little self-imposed deadline. Today, I really don’t feel like it. I really don’t feel like anything. I feel too blergh for anything. But here goes: On Monday Steve and I entered the chemo room at Westmead hospital and were shown to the big blue recliner (me) and the ordinary office chair (for Steve). There was rigmarole. There was more paperwork. There were other poor sods in there getting their treatments, some looking perfectly healthy, as if they’d walked in off the street; others had that more challenged, settled-in look of the long-term ill. There were three tries to get my cannula in. I’m becoming cannula-phobic. Some nurses and doctors are good at this and some aren’t. My veins have always been hard to find – sunken, dehydrated from too much coffee. I’m turning that around, now, with big bottles of water on the go and no more coffee (tea is now my only remaining vice). Next time my goal is to have big fat veins to offer. For four and a half hours, I sat with the drip going in. There was a nice clear bag and then a big black one that you couldn’t see into. It was the big bad brother. It was the limo with the smoked glass. What the hell is in there? It’s easy to say “poison” but I’ll exert myself a little more this time, be more specific. Okay, I’ve just looked it up in my green folder. One bag contains Carboplatin and the other Paclitaxel. We’ll repeat this two more times, on the 10th of March and the 31st of March. The goal is to shrink the tumours so they are manageable for surgery. Then I’ll go in for surgery, rinse and repeat.

On Tuesday, we drove back to Bathurst. I was feeling perky due to the steroids they’d fed me the day before. We ate steak and chips at a pub in Blackheath and nipped down to look out over the cliffs and the long, thin waterfall where there was a rainbow in the spray.

All of these are just words. My main problem is the big C. As in, Constipation. This is where the real misery lies. I’ve had a lot of other interesting thoughts over the past week but they’re all just wisps out there on another plane. For now it’s really just about my guts, my poor guts, struggling to work around the tumours at either end of my gastrointestinal tract.

Still, even on a blergh day like this, there are still small joys. Bertie the black Labrador is my constant companion. He’s having treatments, too: he has a split pad on his right hind paw, so his leg is in a bandage and plastic bag contraption. His plastic bag slaps around the house. He settles in next to me and soon you can hear his gentle breathing, snoring, snuffling. Yesterday’s steady rain was gorgeous and today is bright and clean. I sat at the plastic table in the back yard under a thick canopy of summer leaves and ate Salada biscuits with a scraping of Vegemite.

From wellness to sickness in one afternoon

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Right now, I look fabulous. I have a full head of hair; my gums and fingernails are pink; I’m nice and plump. Next week, I’m going to have to surrender this wellness. I’m going to have to walk through a door into a big room full of comfortable blue recliner chairs, sit myself down, and hold out my arm to receive my poison. After that, my hair will start to fall out, I’ll feel sick, I’ll look sick. Time to howl at the moon! Yes, despite all my preventative surgeries, I’ve been unable to outrun the effects of this BRCA1 gene mutation. I’ve been diagnosed with primary peritoneal cancer: rare, advanced, aggressive. You’ve probably never heard of it, but you may have heard of its close relative: ovarian cancer. Arrrrgghhhh. And I mean arrggghhh. Not the light-hearted arrgghhh of the car won’t start or the computer’s crashed. I mean the big-time, loudest-volume arrrgghhh; one that can be heard down the end of the street.

I’ve been wondering whether to blog about this thing. After all, it’s a great story, with a strong first act turning point, a second act full of advances and retreats, hurdles and hopes, and a third act … As a writer, I’ve got something juicy right here, right inside my guts. All I have to do is spill my guts and I’ll have something. On the other hand, it’s hard to go public. It’s been hard enough as it is, dealing with the waves of sympathy and concern from close family and friends. I’ll be pottering along, forgetting all about it as I compose a tweet or delete penis-enlargement spam, when I’ll get a call and suddenly I’m right back inside the wailing and gnashing of teeth. Going public – letting “everybody” in on my story (my seven blog subscribers and whoever else randomly lands here) could be a big mistake. And yet, I’m doing it. Writing is a compulsion, and a comfort, and to write properly I need at least a sense of an audience, if not an actual audience. So here we are. Let’s see what happens.

So, what happened? Just like countless women with ovarian cancer, I did have strange rumblings and twinges and oddnesses and feeling tired and wanting afternoon naps. But like so many women, abdominal discomfort was nothing new for me. So easily discounted, so easily put down to other things. My father died last June, and there was the funeral, and other family emergencies and problems, so I put my tiredness down to grief and stress. I put my naps down to laziness. I thought I had a gastric bug. But all so mild, no big deal. It’s only in hindsight that I can see what was going on.

Meanwhile, I’d emptied out my pink BRCA1 folder with all its warnings and information and dates of surgeries and reassigned it to “Planning”. Planning as in, goals and ideas. Good use of a newly empty pink folder. Having had preventative surgery (breasts off, ovaries out), I truly thought I’d sorted my cancer risk. I vaguely knew about the risk of other cancers associated with the BRCA1 gene mutation but these risks were tiny. For example, only one percent of BRCA1 carriers get primary peritoneal cancer. So I wasn’t going to worry about that. No, my vague symptoms had to be related to something else. Maybe I had a thyroid problem? I convinced my GP to send me for thyroid tests. All normal. Maybe the hormone replacement medication I was given after I’d had my ovaries out (a “bilateral salpingo oopherectomy”) wasn’t settling properly. Maybe I’m just lazy and really enjoy naps. Because I worked from home most of the time, I could sneak them in after lunch.

I was in my GP’s room for something else when she exclaimed that I was as white as a sheet. Yes, I’d noticed that morning, in the mirror, that I was looking a bit pale. She sent me for a blood test, and then called me personally because my haemoglobin count was down to 80 when it should be about 112. Bizarrely, she was talking about a blood transfusion if it got much lower. I set off on a three-day video shoot. I was now beginning to feel as pale as I looked. Everyone else did the carting of equipment. When I got back, I had a CT scan of my abdomen. This involved drinking a radioactive substance and going in through that big white talking doughnut machine (“breathe in, and hold” … “you may now breathe normally”). I was still not overly worried. My friend Dawn was for some reason driving up from Canberra to be with me as I got the results. I thought this was a little over the top but I let her do it. I sat in the waiting room, waiting for the radiologist to come out with my scans. I did not like the look on his face. It was the face of a concerned person trying not to look concerned. He handed me the CD and said, in a tight little voice, “Stay in touch with your doctor.” Now I was worried. Dawn would be arriving soon. I was not going to run home and peep at the scans on my computer. I was going to go back to the GP at twenty to five with Dawn in tow, to hear my results.

My GP greeted us cheerfully – things can’t be that bad – and then we got down to business. She assumed I’d seen the results in the meantime and so she picked up the thread way further down the line than we were ready for, plunging straight into a chaotic discussion – chaotic because interrupted by alarmed questions and clarifications – about two tumours, one up near the stomach and another down low in the pelvis. The what? The two what? Tumours? At this point I couldn’t bear to hear more. Dawn grabbed the piece of paper from the doctor and read it silently, because I was saying I couldn’t bear to hear too much detail. Forget the detail. Detail is cruel.

When Steve got home from work they went into a huddle because I still wasn’t up to the detail. Dawn talked him through it. Then what did we do? I can’t remember. I was passing from one world into another: from the world of the well into the world of the sick. On January 25, I wrote in my exercise book: “I am marked. I have an X on my door. I’m a tree that has been sprayed in flourescent pink paint, waiting to be lopped.” I spent time in the Bathurst Base Hospital, getting blood and iron transfusions that immediately brought back my pinkness, being visited by friends, getting flowers; I was sent in the front passenger seat of a patient transport vehicle – chatting to the nurse and driver all the way – to Westmead Hospital in Sydney, where I was parked for about a week while they tried to decide what to do with me; I listened to the stories of my fellow patients, all poignant; I listened to lonely, needy people who would start talking as soon as you caught their eye, talking, talking, talking because there was someone there to listen; my sister Deb and Mum and seven-nearly-eight-year old Max visited, bringing knickers and three sets of new pajamas; friends visited; different doctors appeared at my bed asking me to tell the story of myself, again and again. Another scan. A biopsy. The results. Specialists. Steve was with me all this time, or most of it, sitting in chairs for hours while I got to lie in the comfy bed. Mostly, we waited. We waited for doctors, we waited for news, we waited to be admitted, we waited to be discharged.

I was let out into the world for some of this waiting. We stayed with Larissa in Newtown, with two kelpies. The colour and diversity were kaleidoscopic after the greys and whites and beiges of hospital. I loved everything: Larissa’s tanks of rainbow fish and guppies, fresh cherries, sunlight filtering through leaves, the sound of rainbow lorikeets supping on the grape vine, people, dogs, the tiny Belljar cafe in Alice Street. A drive to Coogee Beach, with intense blue sea, intense blue sky, white sand, waves crashing on rocks, seagulls sipping on fresh water running out of a drainage pipe. Camp Cove beach. Bradleys Head with Mum. Colour and nature. The sea. Rocks. I just wanted to sit and watch timeless water crashing against timeless rocks.

So, what’s next? Next week I start chemotherapy. I’ll have three blasts of it at three-week intervals. This will be administered out of the Crown Princess Mary Cancer Centre at Westmead Hospital, so we’ll be driving back and forth (about three and a half hours each way) and staying on and off in Newtown. The idea is to shrink the tumours down so that they are easier to operate on. Then there’ll be my big “debulking” (horrible word, but that’s the one the doctors use) operation and recovery. After that, another blast of chemo to mop up. None of this will be pretty, but I do feel I can cope. I’m up for it.

Barbie doll breasts

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St Agatha

St Agatha

I now have the breasts of a Barbie doll – smooth and nipple-free. Actually at the moment they look very post-operative, but I can see how lovely and symmetrical they’ll be once I recover. The other day I discovered temporary tattoo nipples that one can add from time to time, as needed or wanted. Or I can get a tattoo artist to create an image with a three-dimensional look. Above, I’ve embedded a picture of St Agatha, patron saint of breasts. She is traditionally depicted carrying her excised breasts on a plate. I’ve now completed the final surgical state of my prophylactic bilateral mastectomy, otherwise known as chopping one’s tits off in order to avoid breast cancer. As I’ve explained in previous posts, I’m a carrier of the BRCA1 gene mutation. My sister, aunt and three cousins have all had the breast or ovarian cancer associated with this gene, so I decided to get in first. A year ago, I had the big surgery – both breasts entirely removed. I was left with a couple of saline pouches that would be gradually inflated to create two skin pouches capable of holding permanent silicone implants. My breasts were duly pumped up by a local physician; the other day I returned to my Sydney breast surgeon for the silicone implants. He has done a magnificent job. Now I’m hot and itchy and irritable as I lie around the house recovering. I had envisaged a serene few days on the couch but this heatwave is nasty and we don’t have air conditioning and bleat, bleat, bleat. At least I have nice new breasts in the making.