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‘Two Jugs’

19 Feb

While my energy levels are on the decline, there’s a bit more energy in our home of late – meet Liliana (Lila for short)….

We love the name Lila, but she’s actually named in honour of Dr de Viana:)  (couldn’t call her ‘Daniel’ – Liliana sounds like de Viana….)  

She’s 9 weeks old.

Lila is a JUG (Jack Russell x Pug).  Before you point out the bleeding obvious – I KNOW!!!  The irony with having lost two breasts and now having two dogs – both ‘Jugs’ IS funny!!!  

Ch’i & Lila are getting used to each other and providing much entertainment.

 

Sleep? Doubt it….

18 Feb
So it’s 2.20am, I’ve been lying awake in bed for I don’t know how long now – thinking of so many things.
 
My conversation with Andrea…The finality of a decision on not doing an egg collection. What this means for me? What it means for Paul. What it means for my Mum. Our relationships. Chemo V no chemo. If a second opinion is that I should have it, do I go for a third to be the decider!  Do I trust my gut to be the umpire? 
 
Of course, I don’t want to do chemo – who would?! But, all along I’ve wondered if it would give me a greater sense of having done absolutely everything traditional medicine can offer, to rid my body of this horrid disease.  The game’s just changed.  Sure – physically – I’d be a wreck, but psychologically – perhaps a little more content?
 
Do I tell Dr D/Andrea/my GP about the following – without sounding terrified it has already spread;
 
My shocking memory (could just be forgetfulness or an early tilt towards Alzeheimers which my dear Grandmother suffered), the headaches (which could easily be linked to my menstural cycle) or the pain I feel in my thighs and hands (thighs could also be related to my cycle, hands has only been in the last 6 months and that, I’ve put down to my sewing – which I’ve not done of late).
 
I’ve told Daniel, Jennifer and Andrea I’m not upset or sad.  I’m not.  But I sure as hell am annoyed.  
I’m also totally at ease with the fact that this is my lot.  
I’m not happy, but do not have the energy to be distraught.  That would be so detrimental to my health on so many levels.  I’m a bit jacked-off, angry, but the time spent on these emotions is very, very minimal.  In fact, writing those words even seems like a waste of time and energy!  
I had one appointment with Daniel where I didn’t smile a lot and told him I felt a bit ‘cranky’ with my body.  Even then, I felt the need to apologise repeatedly about my mood, I didn’t want him to think I was angry with him.  Absolutely not.  How could I be?  

You’re not going to want to hear this….

18 Feb
So, I saw Dr D again today.
After checking how I was recovering from the most recent surgeries and how I went with the Radiation Oncologist, he said “you’re probably not going to want to hear this…..”
WHAT?!  He didn’t even say that when I was diagnosed – first or second time?!?!?
….”but I’ve sent away a bit more of the tumour for another test.”
“Yes – I do wan’t to hear this – why, what’s the result and what does it mean?”
To put it simply, if the tumour tests positive with high levels of Ki-67, the risk of recurrence is higher than average.  It can also indicate a more aggressive tumour, or predict a poor prognosis.
Before deciding on further treatment, we need the results.
I thank him for going that extra mile to learn as much as we can about this cancer.  More waiting.

Infertility and Cancer = complicated…..

14 Feb

Physically – I’m still sore.  I’m doing my prescribed exercises + a bit extra.  The left side still burns, my arm is heavy and quite weak.  I haven’t driven the car for three weeks and am sick of relying on others.

 

I’ve spoken to two specialists today – one who I’ve seen for gynaecological ‘issues’ (endometriosis and polycystic ovaries), the other who focuses more on fertility issues.  Sure, the two are linked – but there is a difference.

Baby making and how to try and achieve a pregnancy safely, in difficult circumstances (such as mine where I’ve had two oestrogen receptive breast cancers at an early age) can be two very different things.
All I can do is homework and try to weigh-up the potential risks of high oestrogen levels.  Knowledge is power, but despite my best efforts to seek expert opinion, I must say I’m exhausted at the gravity of this situation.

Ohh – yeah – it’s Valentine’s Day!  Happy baby making everyone:)

Night away…

12 Feb
So…..another diagnosis + a couple of surgeries and overload of information on possible treatment doesn’t exactly make for a relaxed way to mark a decade of marriage.
Paul had no idea, but with the help of a few people I managed to organise a night away.
Close to home, ridiculously indulgent & probably a bit ambitious – but we needed it.
Ohhh – I was just out of hospital and wasn’t very mobile – the maxi dress hid the not-so-sexy compression stockings!!

So where was the tumour?

9 Feb
I didn’t want to go and see the Radiation Oncologist as for reasons explained previously, I don’t want Radiotherapy.
She read through the notes from last time (first diagnosis when I saw another Radiation Oncologist) and mentioned there was a certain tone indicating my reluctance to have this treatment last time around.
Hmmmmmmm……
After going from the screen, to hard copies and the films I’d carted along – her opening question was “So where was the tumour?”
Floored me and I think Paul was shocked too.
As I pointed to my chest, unable to find the words, she began backtracking and trying to explain her confusion by saying it is an odd case “as your breasts have been removed”.
Yes.  That bit actually didn’t need explaining to me.
I went through the details pertinent to my odd case, but had decided with her opening question, that she would not be part of my treatment team.
Nothing personal, but NEXT!

10 years married – let’s go the the oncologist…

9 Feb
Today is our 10th Wedding Anniversary.
I can think of 100 better ways to mark the day, but have a 9am appointment with a Radiation Oncologist.
Priorities change don’t they?  Right now, this is rather pressing, so Paul and I will do something special at a later date.
In sickness and in health…….Happy Anniversary!

Angry About Antarctica…

9 Feb
It’s somewhere I’ve always wanted to go.
Having done news for radio stations in Tasmania, where many of the research vessels are based between trips to the Antarctic, I’ve developed a love for this mysterious wilderness.  In fact, when I used to drive down Mount Tamborine at 2.30am on my way to work, the ABC used to have a weekly segment with one of the scientists based at Mawson’s Hut.  His vivid description of life on the ice intrigued me no end.
Would you believe in the past week I’ve discovered that rather than having to do a big expedition, leaving from Argentina – there’s a flight over the brilliant white THIS SUNDAY, leaving from Melbourne!!
I was prepared to sell the house and defy Doctor’s orders to get on the plane, until I found out I have to have another operation.
Only one thing to say – I’m ANGRY ABOUT ANTARCTICA.

Breast Cancer V Baby

8 Feb

So here’s the deal.

Oestrogen has fed my first and second breast cancer, I need oestrogen to try and get some eggs – a LOT of it.  That’s the danger.

Before we even talk about getting eggs, putting them with sperm, to try and create an embryo which may/may not turn into a baby – we have to look at the fact that oestrogen is doing nasty things in my body.

In the past week I’ve consulted three fertility specialists, each with different experiences in treating women who have/have had breast cancer during their reproductive years.  It’s SO detailed.  And risky.  I don’t want to write a book on this, but will share some of their comments;

  • ‘sounds like a desperate situation, overall you have to consider your long term health’
  • ‘This is unbelievable.  Guess it justifies having the bilateral mastectomies.  Terrible predicament you find yourself in.’
  • ‘ovarian cancer could feature in your future and your chances of surviving breast cancer will be increased if you have your ovaries removed’
  • ‘we can try to stimulate your ovaries to do an egg collection 4-6 weeks after lumpectomy.  Just need to keep oestrogen levels low, which will mean fewer eggs.  Monitor levels, pull out if it gets too high.’
  • ‘AMH test shows you have a good number of eggs, it’s just how to get them to size safely, to do a collection and freeze.’
  • ‘If you can get some eggs/create an embryo, put them on ice.  Get through surgery, treatment for BC, wait 5 years till you’re in the clear, try to fall pregnant with frozen embryo transfer.  Although that will see a spike in oestrogen levels throughout pregnancy, so surrogacy is the safest option.’
  • ‘IVF cycle on someone with more than 80%+ oestrogen receptor status is not safe.’
  • ‘Removing ovaries will increase your survival advantage from breast cancer and remove potential risk of ovarian cancer.’
  • ‘You have to be alive to have a baby.  It’s really an open and shut case.’

I’ve got some big decisions to make.

One step at a time…

7 Feb

It’s almost a week since my last surgery.  I’ve had an interesting day.

I’ve spoken to Dr D’s Practice Manager for the first time since the new diagnosis.  Her take on the news was very similar to his “shitty things happen to nice people”, I’m one of those statistics they don’t like to have “the one percent that will do something unexpected”.

I’ve had my wounds dressed by Andrea and shared a smile and joke about the irony of the situation.

I’ve asked Dr D about 20 questions he probably hated trying to find impossible answers for, but I admire that he tried.

Here are some shots of Andrea (& Dr D’s) handiwork;

The stress leading up to the appointment, the actual appointment and the car ride to and from the rooms seriously wore me out.
I now have appointments with a Radiation Oncologist and Medical Oncologist in the next week or so.  I see Dr D again in a fortnight.
A comfortable lounge and glass of red awaited….

What will today bring?

6 Feb

The post-anaesthetic fog is finally lifting.  Geez, it’s been heavy this time, I’ve really felt like a zombie.  I can’t blame too much pain relief because all I’ve been taking is Panadol and Nurofen.

Despite my less-than-clear mindset, I’ve been doing a lot of reading on Infiltrating Ductal Carcinoma, radiation and tamoxifen.

It’s…well, disturbing!  Google has changed the world, but some of the posts/forums are just downright scary.  I’ll put my professional hat on again and stick to the trusted .org or .gov.au, evidence-based facts rather than commentary.  Everyone’s different.

I expect my list of questions for Dr D, the Radiation Oncologist and Medical Oncologist won’t please them – but their job is not about making people happy – it’s about keeping them alive.

I’m looking forward to seeing him.  Everything changed three weeks ago.  I wonder if he ever thought that would or could happen.  It has been pretty full on.  I’m glad I have the confidence and comfort in my ‘team’, it would be a truly awful situation if I didn’t.

Ohh the pressure…

5 Feb

Stress and anxiety are a very real part of this journey, for me and others close by.

Keeping a lid on those overwhelming feelings isn’t always easy.  Thank goodness I’ve learned to pay attention to these feelings, acknowledge them and try to manage them by using different techniques.  Avoidance is of course the instant reaction, but unfortunately I can’t just close my eyes and wish or will this away.  It’s not going away.
Mindfulness, deep breathing, meditation and a lot of quiet time are all absolute necessities in my everyday right now.  There’s a lot to think about, but I also have a great need to just ‘be’.  Sometimes it’s easier said than done, but it is do-able.

Year in review…

5 Feb
So, a snapshot of the year-or-so since I last wrote….
I’ve;
…spent time with some amazing people, old friends and new…
…experienced many emotions in follow-up testing…
…been involved in many breast cancer awareness opportunities, including public speaking, worked at Cancer Council Queensland,  and been part of an educational DVD for the McGrath Foundation…
…featured in an article on femininity for Marie Claire magazine, the interview process was unusual for me (I’m used to being on the ‘interviewer’ side).
As for the shoot, it was at home, with two pro’s I had an immediate connection with.  It was quite an experience and ended with some topless shots…(me – I know it’s HILARIOUS, but the sentiment at the heart of these is very raw)…
Thank you so much for your considerate work and a special experience Emma Phillips….. http://emmaphillips.com.au
…had the immense privilege of joining my Mum and observing cranio-facial surgery on 9 year old Genford, while writing a piece for Operation Smile….
…enjoyed our beautiful coastline….
And the green behind the gold…(I really do love the hinterland – specifically Tamborine Mountain)…
…been with my younger sister as she gave birth for the first time…
meet Harrison…
…indulged my creative side, done a pattern making course & let a little design business grow around me…
…and, in case you hadn’t noticed – explored my ‘dark side’ (as my fabulous gay hairdressers exclaimed when I told them I was maybe a little bored with blonde!!!)…

Good news:)

4 Feb
7.17pm last night my mobile rang.  The call register shows the conversation lasted 1 minute.
“Hey Kate, Dr D here”…(okay he didn’t say ‘Dr D‘ – I’m being protective!)
“How are you, not too sore?”, I answered “bit sore, but it’ll pass, you have news?”
“We’ve got the results here, the lymph node is clear – so that’s good news.”
Enough said.
No node involvement means I don’t have to have chemo. Phew.

Deja vu

3 Feb
Deja vu – disagreeable familiarity or sameness.
Origin – French.
Literally – already seen or heard.

…..so much of what I’m experiencing right now fits this description.

Discovering a lump in my ‘breast’, the instant and overwhelming, sick-to-the-stomach feeling that it was nasty, the look on my husband’s face when I asked ‘what does this feel like to you?’, people looking at me like I’m going to die…..

The cancer and my treatment is slightly more complicated this time around.

Radiation and hormone treatment are unavoidable (unless you include curling up to let cancer get you an option), and while I’m grateful to hear there’s no lymph node involvement, I would be naive to think that chemotherapy is not about to feature in conversations with various specialists.

For now, I’m recovering from a second operation in the space of a week, not to mention a hell of a jolt.  My body’s already feeling beaten up and weak.  My mind and spirit though – the opposite.

I’ll get into further detail of why I feel a ‘disagreeable familiarity or sameness’ at some point.  For now, perhaps I’ll work on providing a snapshot of what’s happened since I last put fingers to keyboard in this forum.

Operation # 7

1 Feb

The trauma of having a Sentinel Node Biopsy (for the first time) will never leave me.  I congratulated myself for having made it through that dreadful experience by reassuring myself that I would never have to experience the procedure again.

WRONG!

Same hospital, same doctor, same nurse, same bloody room……..same feelings of utter dread, disbelief and indescribable, unbelievably excruciating pain.

I politely asked if Paul could be in the room with me.  When the answer came back as being ‘no, for everyone’s safety…..’ blah, blah.  I turned into a pain in the arse patient, firmly, defiantly demanding his presence.

To further complicate things, they also had to perform a ‘hook wire’ procedure, where they use ultrasound to guide a wire directly into the tumour, so it’s easy for the surgeon to identify in theatre.

I sobbed so hard, taking a breath in hurt.

Some things are similar this time around, but the gravity of the situation is different.

I left the rooms where the procedures were done and gingerly headed for the room I would stay in after surgery.  I was met by two of the key figures in the recovery from my previous surgeries.  Nurses Margaret and Andy (Andrea) both told me they didn’t know what to say.

I was just happy to see their familiar faces.

My sister also came.  With her baby Harrison.

Everything is different……

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You’re just so unlucky…

28 Jan
I recognise the number on my phone, I’ve been waiting, anxiously for this call.
It’s Andrea my breast care nurse.  This is what I scribbled down;
It went something like this;
Are you at home?
Is Paul or your Mum with you? (Heart sinks……)
You’re just SOOOOOOO unlucky…Under two percent of patients with DCIS ever experience any further problems.
UNFORTUNATELY – it’s MALIGNANT. INFILTRATING DUCTAL CARCINOMA. DANIEL’s EXCISED AS MUCH AS POSSIBLE FOR NOW.  I SHOULD HAVE RADIATION AND HORMONE THERAPY.  
It’s a 7mm tumour; 6mm IDC, the other mm is DCIS.  
Right, at least we know what we’re dealing with.
I’m not shocked.
I can’t look across the kitchen bench at Paul, I know this is a phone call that will change my life, I have to listen intently and ask as many questions as possible.
The focus then shifts from my life, to talk about my efforts to bring another life to this world.
We had a long talk about fertility issues and the fact I never made it through to egg collection as my ovaries hyper-stimulated on Chlomid.  Any further intervention in the form of IVF could be risky due to my positive oestrogen receptor status with this and the last cancer.
Andrea says one day I think you should do it, next day don’t – too risky..  We agree this is the see-saw I’ve been on since first diagnosis – only now the decision is final.  The hormone therapy, Tamoxifen, is a five year plan.  I’ll be nearly 40, have had two BC diagnoses, and this little body will have been on Tamoxifen for five years.  Not forgetting the fact Paul will be 57..I’d really only thought about the child – you know – at best – when Paul’s 60, he/she will only be three..Andrea added, Paul will be getting on – and what if something happens to me?  Right, if the gravity of this situation wasn’t clear – there it is.  I’ll be sick or dead and he’ll be left with a toddler.
I hesitantly asked whether Daniel was convinced I didn’t need chemo.  He only commented on this particular cancer – not my history as such.  He didn’t think so, but it’s really a question for the Oncologist.  They also encouraged me to get a second opinion.  Andrea told me the Oncologist might err on the side of caution and given my history, chemo would cover all bases.  I’m 34 with a second breast cancer diagnosis after having my breasts removed.
Shit.
Andrea confirmed my next follow-up appointment with Daniel and the Oncologist in coming days.  She asked if I had any questions.
Yes – I can’t speak to Daniel now?  
Kate, we’re both in front of the computer just shaking our heads, can’t believe it, you’re just so unlucky…….

Operation # 6…almost didn’t happen today!

26 Jan
As I was getting ready to head to the hospital, the song in my head was ‘Stormy Weather’.  It’s been pouring rain all night and there was no sign of it letting up.  (We had torrential rain around the time of my double mastectomies and it’s been dreary weather each time I’ve gone in for surgery!)
As I changed into the paper undies, the head nurse popped her head through the curtain to tell me there was going to be a delay.  Actually – the surgery might not happen today, as some of the theatre’s have flooded – including the one I was due to go into.
I was thirsty, hungry, psyched up to go in and just wanted it done!
She calmy told me they’re trying to shuffle things around so it could go ahead and they’re trying to track Dr D down to see what he wants to do.  I told her, to tell him to ‘bring some gumboots’.  Glad they both have a sense of humour.
Anyway, I sat tight in my sexy underwear, backless gown, shower cap and compression stockings.  Eventually, the thumbs up came.  I was pretty relieved to see Dr D on the other side of those big doors.
And no, he wasn’t wearing his wellies!
The recovery – pretty much as expected.
It’s nice to be home with Ch’i to keep me company, as I wait for word on what the rotten lump actually is.

Nice little gathering…

23 Jan
Before all of this began to unravel, I’d organised a little get together for my birthday.
As it turned out, the timing meant we shared a lovely afternoon just a few days after the biopsies and a few days before what’s to be my 6th operation on these bloody ‘boobs’.
I know it was terribly awkward for some people (I appreciate their efforts to come along and ‘keep it positive’ despite what might be to come), but for me – it was fantastic.  I had a great time with some of those closest to me.
Just what the Dr. ordered.

It goes like this…

20 Jan
No messing around this time;
Ultrasound & Fine Needle Aspiration (FNA) request – NOW…..
Another waiting room, another horrible gut feel….
There it is…..
More paperwork….
Done.
Ouch.  Now the waiting…..
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