Still breathing…

Three months has gone by so quickly since I wrote my last post.  It seems years since I was struggling under the weight (pun intended!) of Graves.  Since my cancer diagnosis it’s been all about that.  I’ve had some blood tests that show my TSH is ‘normal’ but antibodies are still active.  Thats more than a year on.  The best advice I’ve been given is that sometime after chemo finishes (late June) they’ll get back to my Graves and see what needs to be done.  Right now…I want my thryoid out.  I’d be much happier managing with thyroxine everyday than the rollercoaster it’s led me on.  Come July….rack me up and rip it out!  I wish I’d been more assertive on that a year ago.  My mind is made up pending a doctor agreeing.  Coincidentally, my eminent breast surgeon is also an eminent thryoid surgeon so I’m sure I’ll get him on side!

Meanwhile, I’ve got 4 chemo cycles with 2 to go.  I’ve not been able to work much due to intense reaction to the drugs and side effects.  Work has been amazingly supportive.  Their stance has been..come back when you’re ready.  Hopefully, that’ll be sometime in July assuming I get the all clear from genetic testing which means I’ll proceed to radiotherapy and after that (cross fingers) ‘the all clear’  and back into a normal life.  As normal as I can live life anyway!

Meanwhile, life goes on.  Good and bad things happen.  I probably won’t come back here much to post but will leave it here for a while as hopefully new Graves sufferers will use this diary as a resource as to what they might expect (
hopefully without the cancer part at the end of it!).

R xo

“Triple Negative” nicely sums up the past 12 months

I should have known.  I can’t even get ‘normal’ breast cancer! 

I’ve been telling this story so much lately it’s almost unbelieveable you haven’t already heard?  Well, in case you haven’t….

The pathology of my cancer had some problems.  It’s triple negative and there was some lymph vascular invasion.  On an aggression scale of 1-9, my tumour was a 9 (Grade 3).  I won’t go into all the details of everything here as there’s plenty of info on the web if you’re interested.  I had to go back for a second surgery so they could clean up the ‘dirty margins’ that could only be seen with the pathology.  I’m still sore and bruised.

The upshot is…I start chemo in the first week of March and I am opting into a trial which will take 12 months to complete.  I’ve taken up to 6 months unpaid leave from work.  I have to say my boss and colleagues been very supportive which confirms I made the right move leaving the previous place where I was so miserable.

I asked the Oncologist about how the chemo will ’sit’ with my Graves.  She told me she’s had other patients where the chemo has pulled them out of Graves remission.  Before I start I have to have a raft of blood tests including TSH, T3, T4 and antibodies and my onco and endo will talk.  Apparently there’ll be times I won’t know if I’m suffering side effects from chemo, Graves symptoms, or menopause (which I am told I can expect to kick in during treatment).  Delightful!

Meanwhile, my weight continues to explode!  I know it seems silly to be thinking about that at a time like this but I don’t feel like me.  I’m going to lose my hair and I’m convinced I am going to look like a big ol’ waxy potato!  I don’t think I can do the wig thing.  Any suggestions for head covering and especially makeup tricks (I’m going to lose my eyelashes and eyebrows too) gratefully received.  

Fab to know despite everything, vanity is my most prominent characteristic!

What a week!

A plane load of people cheated almost certain death thanks to the exceptional skill of their pilot.  America welcomed a new President and a new era of hope.  Both of these events so BIG that people will always remember where they were when….

I had my surgery 5 days ago now.  They removed the lump and did the axillary dissection (the most painful part I have to say).  I have a meeting with the docs to discuss the pathology next week but according to the surgeon the lump was a bit bigger than the ultrasound depicted and he wasn’t happy with how it was tracking up to the sentinel node.  I’m home (never did get my pedicure and glass of wine in hospital!) but being visited by home care nurses every day for the next week or so.  Because of the axillary dissection, its going to be a bit longer before I can return to work…I’m attached to a drain coming out of my underarm for another few days.

It’s all still quite a surreal feeling.  I’ve had a few moments where I’ve begun to realise this is actually happening.  In general I’m ok and as the doctor says, it’s all still treatable / curable but the treatments are going to be more intense than first thought.  Chemo is a certainty and the details will be discussed next week.  This may mean some months off work.  Luckily I have insurance cover that will pay my salary while I am not able to work.

The hardest part of all this is allowing other people to look after me.  I have no probem with letting the nurses do their thing.  But I’m struggling with letting my family and friends do things for me that I feel are simple and I should be able to do myself.  Yesterday I asked my mother to change my bedsheets when I realised there was no chance I was going to be able to do it myself.  Of course she was happy to do so but it felt weird asking.  My best friend has been wonderful and she seems to get a kick out of mothering me so as much as possible I’m letting her.

Looking forward to a visit today from some work-girlfriends who always make me laugh.  Perhaps I’ll have that glass of wine after all!

R xo

The Surreal Life

Firstly, I really want to say thankyou to the people who read this blog.  I really hope it has given my readers some information or perspective on Graves they’ve found helpful.  It helps me to write it. It was interesting to see that the biggest day ever for traffic on this blog was New Year’s Eve.  Are we all looking for a fresh start?  A new beginning?

Thankyou to Rob and Cheryl for checking in on me.  It’s nice to be thought about and it helps me want to write.  I hope you are both doing well.

For the past few weeks I haven’t known what to say.  Having Graves has taken a back seat for the moment.  I’m still taking my meds (despite Oprah saying she no longer takes anything for her ‘thyroid condition’ which she did not name).  I’m with you on that one Cheryl…I’m on the side of science.  And never more so than now.

Surgery is scheduled for the afternoon of the 19th.  I’m having a lumpectomy, a sentinel node biopsy and if required, an axillary dissection.  Hopefully will be out of hospital the next day or soon thereafter (I know a lot of women go home the same day but my doctor believes in a good night’s rest in hospital).  I’ll definitely need to do radiotherapy, with chemo a 50/50 chance pending the post-op pathology.  They tell me that because I am under 40, the cancer is likely to have more aggressive characteristics (albeit early stages) and therefore the current medical preference is to treat it aggressively.  We shall see.

I’ve got good docs on the case but still it’s difficult to give your life over just like that.  What I mean is, doing what I’m told…being patient…taking things one day at a time.  I’m not good at any of those things.

I hasten to add I don’t feel sick.  As I said in a comment, before I was diagnosed and treated with Graves I was much, much more physically (and mentally!) ill.  The physical symptoms of untreated Graves were almost unbearable.  Right now I feel fine except that there is a rock hard little nugget (completely painless) in the lower right quadrant of my right breast.  And I’m nervous about the operation itself…I am a total pain wimp!  Hopefully they will give me the ‘good stuff’ afterwards.

In terms of the practical things in life, work is being very understanding.  Despite not being there long, everyone I’ve told has been really helpful and supporting.  My boss is keen to work my role around whatever treatment I’ll need.  I’ve been getting some really great client and company feedback later so I really want to be able to build on that, and they do too. 

Because of my sister’s illness, my parents had already made the decision to move closer…they moved into their new house this week.  Probably the hardest part of this whole thing was telling my parents and my sisters that I had breast cancer.  Two daughters with cancer (unrelated, completely different cancers) is a lot for a family to bear.  Luckily they will be able to help me before and after surgery…I live alone and won’t be able to drive for a week or so. 

And it’s amazing too how people react.  Of course, very few people know about Graves so when you tell them they tend to look at you blankly…although I did get a massage last week because of bad back pain and the male therapist not only knew about Graves but knew details…I’ll go back to him for sure!  Ironically, he did chide me a little saying…”People with Graves are supposed to avoid stress.  Isn’t your job pretty stressful?”.  I didn’t mention the cancer to him because I really really wanted the massage and didn’t want him turning me away for lack of a Doctor’s note! 

When you mention the ‘C’ word, people either downplay the significance of it…”Oh you’ll be fine and back on board in no time” or they get very afraid.  I’ve got one close friend who can barely speak to me or she’s in tears and another who broke down sobbing when I told her over a cappuccino.  This despite the fact that the chance of ‘cure’ is something like 98%.

It all still seems quite surreal and I think will be until I’m in that hospital gown on Monday.  My sister and I have been joking about me having to borrow the ugly wig she bought during her chemo.  It’s not that funny really, but what else can you do?   The wig really is ugly.

So thats whats going on with me.  I’m ok apart from being really tired.  My breast is sore but only because everyone keeps poking me (professionally of course).  Will be glad when this chapter is done and will be back here in a week or so to whinge and moan about the surgery.  It’s a shame about that part because the hospital I’m going to is a super posh private place where I can order wine and a pedicure if I really want to.  You could almost convince yourself you’re at a nice hotel except for the pain, stitches and drains part! 

R xo

…and breathe!

So there’s every chance this whole cancer ‘thing’ will be a little blip and then back to normal (as normal as I’ll ever get anyhow!).  Having seen the surgeon today I’m reassured by how routine this all is for him.   He has no doubts it can be removed, contained…and I can get on with my life.  Of course, thats not to say the next few months aren’t going to be difficult (and surgery in approximately 2 weeks time then radiotherapy).  My sister reminded me we are strong people and have faced bigger difficulties before.

Too tired to say more now but no doubt will have more to say later!

And so this is cancer

The lump is bad.  How bad I’m not sure but carcinoma is seen in the cells taken by the biopsy.  My GP is letting my ‘team’ know i.e. my endocrinologist, my gynaecologist…they’re all on hold until I see some other ‘ologists’ tomorrow and over the next few days.  She expects I’ll be scheduled for surgery within a week or so. 

Not sure how to feel about this yet.  I know it’s highly treatable so I’m not so concerned about that.  I’m a little frightened of some of the treatments themselves as unfortunately I already know too much about cancer.  It’s ridiculous to ask ‘why me’ because…why not me?

Seriously though…..WTF?????

And so this is Christmas?

There are things that happen that I don’t write about here.  Probably because once things are out there in the blogosphere, they live forever and you can’t take them back.  And writing things down of course makes things ‘real’….written evidence of your thoughts and actions.

This is a blog about my journey with Graves Disease…and it’s been an eventful few months.  ‘Few years’ really because of course the disease began long, long before diagnosis came.  Unfotunately there’s been a lot of illness in my family this year and a lot of issues to deal with. My sister’s cancer, my dad’s emergency heart tests (not written about here), the deaths of my grandmother and great aunt (also not written about here), my work problems…many other things I could mention.  It’s been a long hard year and I’ve been looking forward to finishing it out and getting on with a new life in 2009, hopefully (upcoming January blood test permitting), in full remission from Graves.

Of course, nothing is ever that simple; life is complicated.

A couple of weeks ago I noticed a hard, painless lump on the underside of my right breast.  Yesterday I had a biposy but because of the Christmas break the pathology won’t be back for a few more days.  I also had a mammogram and an ultrasound after which the Head of Radiology came to speak with me.  “I’m not optimistic about the outcome of the pathology based on the pictures we’re seeing”.   There’s been a flurry of phone calls from doctors and specialists.  In anticipation of a ”bad” pathology I’m scheduled to see a breast surgeon next week. 

It’s weird.  Having watched my sister go through cancer (a very different kind of cancer), I often wondered how I would cope if it came my way.  There’s still a chance the pathology will come back ‘benign’ but my doctor wants me to be prepared in case that doesn’t happen.  I feel quite calm actually.  My first instinct is to reassure the people around me.  If it is cancer, I know I’ll have to give up control for a while…the most difficult thing for me to do.  I’ll have to do what I’m told to do by people who know better than me.  I’m under no illusions about cancer treatments and how ‘fun’ they can be…my sister is in the middle of radiotherapy right now so I’m sure I won’t always be this accepting.

Ah well.  There’s Christmas to get through first…and the worst may not happen so I’m going to have a glass of champagne and not worry about things outside of my control.  Until next week anyway.  ;->

Wish me luck. 

Merry Christmas and happy holidays to all.

R xo