“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!

Graves takes all the fun out of being an alcoholic

People have asked me….’Can you drink alcohol while taking neomercazole (carbimazole)?’

As far as I know, the answer is ‘yes’. Is it as much fun? As far as my experience goes, the answer is ‘no’. For some reason, ever since I’ve been medicated for Graves, I just can’t push the alcohol boat out as far as I used to. After 2 or 3 drinks I’m just ‘done’. Not drunk, just not interested in drinking. It’s like my brain turns off from the experience or maybe my body doesn’t want to process it.

I’m sure some people are horrified that I might want to drink more in a way that sounds irresponsible (by the way kids, drink responsibly!)…do I sound like an alcoholic? Well I definitely inherited the family gene for overindulgence which in some previous generations has manifested itself as alcohol abuse. I used to have a cast iron liver and work in an industry where drinking is part of your career progression plan! My family are all ‘party people’.

But these days I’m the one sitting there at 11pm, tapping her toe and looking at her watch. In fact that was me last night. It’s the morning after my office Christmas party and I’m the only one around here not sick or in self-inflicted pain. Thats good I suppose…but it begs a more fundamental question. Has Graves made me boring?

How did I get Graves?

In some respects, this is a dumbass question.  After all, it doesn’t change anything.  It’s here – I’ve got it…for life.

Most of the literature talks about three separate theories.  Because no one really knows.  They can be quite complex to understand but in summary…

Theory one.  It’s genetic…a silent marker sits on you DNA waiting to be activated at a time of it’s choosing.  And if there is a history of auto-immune disease in your family, you have a greater chance of getting an auto-immune disease (and not necessarily the same one your family member has).

Theory two.  Some kind of cell reaction occurs as a result of an infection, setting off the chain of events that manifests as Graves disease.

Theory three.  An extremely stressful event leads to a severe physiological reaction i.e. Graves.

Based on these three simplistic interpretations of the possible causes (and there may be many more), well I had no chance at all.

Genetics.  My mother, grandmother and two aunts have all had complete thyroidectomies.  None were diagnosed with Graves or any other auto-immune disease but possibly this is due to lack of appropriate medical attention early in the piece (not uncommon for people living a poor, rural life).  A first cousin also on that side was diagnosed with Graves nearly the same time as me.  On the other side of the family, my father was diagnosed with the auto-immune disease, sarcoidosis, 15+ years ago.

An infection.  About 4 years ago, I developed a seriously bad case of pharyngitis.  Thats tonsilitis, without the tonsils (snipped out when I was 5).  The infection was so bad, I had to take two full courses of antibiotics (something I would normally do anything to avoid) and moaned through two painful weeks spent in bed.  I’d never been so sick before, and never since.  More than 12 months later I was having trouble with sore throats and was constantly losing my voice.  I went to see an ENT specialist who told me my vocal chords were still inflamed and my throat muscles were overcompensating, causing the voice loss.  It was a shock for someone who had years of vocal training behind them (I was a vocal major in a music degree) to end up in speech therapy.

Extreme stress.  About three years ago, and after 13 years of remission, my sister suffered a cancer relapse.  After ten years, Doctors consider you ‘cured’ from cancer and so we all thought that episode was done with.  So it was a big shock to get the call from my mother, that my sister was in hospital because she’d collapsed at work because of a previously undetected, 15 centimetre tumour sitting between her chest wall and her left lung.   Then of course the shock of her urgent surgery (lung removed along with a significant chunk of her rib cage), waiting for pathology (malignant), seeing her lying unconscious while the respirator moved her body up and down in such an artificial, mechanical manner.  Observing the awful months of chemo and scans and waiting for results.  Feeling helpless and guilty, all while trying to hide our grown up fears in front of her kids.  Dealing with morons at work or in life who think you care about their petty day to day complaints.

So yeah…genetics, infection and stress.  I think I’ve got those covered.  I’m thinking about this tonight because yet again, my sister is back in hospital.  They don’t think it’s cancer.  They think she has a collection of fluid around her kidney and spleen causing intense pain and nausea.  It’s almost certainly because of the surgery she had a few months ago (which was for cancer).  It’ll need to be aspirated one way or another.  Seriously, she can’t catch a break.

So I’ve got Graves and I don’t really know how.  But I don’t have cancer.

Turning around

So lots and lots has happened since my last post.  Almost too much to tell.  But here’s some of it.

My sister has had surgery to remove two malignant tumours.  After a week in hospital, she’s now home, still in remarkable spirits for someone who has been through so much.

With that and a lot of pressure at work, there’s been days I’ve forgotten to take my meds and I’m getting heart palpitations intermittently.  Still much better than before.  I do think I’m beginning to chunk up a bit though.  Could really do without that part.  Guess I will have to be really really careful about eating.  Finding that I still can’t really drink alcohol.  Even two glasses makes me feel quite ill.  And still keeping caffeine consumption low although allowing myself the off cup of tea here and there.  Next blood test is next week.

And today I was offered a new job with great pay, conditions and they seem to be a really cool group of people with a lot of empathy for their staff.  I’m considering things over the weekend but more than likely I’ll accept and be able to put my current job situation behind me.  With a new sense of strength I can see even more clearly that being there in the first place was the wrong move and not just because it coincided with my diagnosis at the height of my symptoms.

I read somewhere this week that the singer, Toni Childs (not my musical cup of tea), suffers with Graves disease and she had a ten year ‘break’ in order to recover.  In the article she said that she had to change her whole life.  It really brought home to me the need to take this disease seriously as the ramifications can be far reaching not just for the sufferer but their friends and family too.

Alcohol is the devil

I succumbed to peer pressure last night and had maybe three glasses of wine. Thats a lot less than I would normally drink on a typical Friday night work related binge but I’m certainly feeling the after effects. Woke early and have no change of going back to sleep. Of course I forgot to take my neomercazole last night too. I thought a glass of wine at the end of a long and emotional week would be just the ticket. Funny then how this mornng I just feel kind of ….blech!

The theme for the coming week is ‘tests’. My sister has more tests and is facing surgery as soon as possible to remove the suspicious lesion. My next blood test has to be taken by end of the week. And I’ve been asked to take on online test to show aptitude etc. Sort of a psych evaluation (yeah, good freakin’ luck!) as part of my job application to a big, big company.

I find that kind of bizarre and interesting all at the same time. And I really want the job. The role is great, pay and conditions are good….but best of all, it’s based less than ten minutes from my new apartment and work hours are 8.30-4.30 AND you can work from home one day a week. Sweet! Obviously being able to get a bit of that elusive work/life balance happening would only help my Grave’s recovery. Wish me luck!

Caffeine withdrawal is for sissies

I was dreading this part…giving up caffeine. Many years ago I attended a detox ‘retreat’ and my caffeine withdrawal was so bad I wanted to murder someone. I never did go back up to my caffeine drinking heights so this time around I’m not feeling soooo bad. Yesterday I made it through with only one weak cappucino and got a little bit headachy later in the afternoon…but survived. Today I had a cup of tea and a really weak instant coffee and didn’t miss a hot drink the afternoon. And today I probably felt better than I have in a very long time. I even made lists of tasks at work…and crossed some off. I wonder if the increased dose of carbimazole has kicked in already?

Looking forward to crossing work off but trying not to make rash / graves generated decisions. Caught up with my old boss and he helped me see a way forward and it highlighted to me how I’ve let my confidence break over this disease and trying to keep everyone else happy. I’m biding my time….

Back to work blues

Back to work in the morning following a sunny weekend spent mostly on the road heading to, then from, my parent’s new house in the country. Chatting with my mother, she told me about a first cousin (who I haven’t seen since childhood) who was also diagnosed with Graves some years ago and she opted not to follow up with any treatment. Nothing at all. I should add she’s also Schizophrenic so I imagine Graves doesn’t seem that big a deal to her. She’s also living in a small redneck village with limited professional medical resources let alone specialists near by. I hope she doesn’t regret her choice later. Tomorrow I’m going for a blood test which will see if the medication is doing anything so far and I’m going to try to convince my sister to go get her blood tested too.

I’m taking an oath here and now not to get too stressed this week…lots of politics and intrigue at the new job…but I am going to try and stay serene and rise above. Good freakin’ luck to me!

Two Weeks Into Treatment

So, after the Ultrasound and the Nuclear scan and the consultation with the Endocronologist (“typical Graves pattern…and you’re VERY symptomatic”), here I am taking 10mg of Neomercazole (2 x 5mg) per day. I have a blood test booked in for the end of next week, which will be followed by a phone consult with the specialist who will let me know if the meds need to go up or down. My instinct is telling me I need more. Over the past two weeks I’ve noticed that the best way to get ‘coverage’ from symptoms is to take Tablet # 1 at about 9.30am, and Tablet #2 at about 4pm. Otherwise I seem to be off on the fast heart beat and sore joints track by the middle of the afternoon and of course this make me cranky and tired at work. I started a new job just as this issue was beginning to take shape…and I’ve been overdoing the hours and the stress and I know it’s not helping but I’m trying not to let that be the first impression people at my new job have of me…”the girl with the health ‘issues’”. They’re a big drinking crowd and I already know I’m a fool to try and keep up…not helping me at all. Trying to cut back on alcohol is hard for a social person in a job that requires a lot of socialising! And do I really have to let go of my one good coffee per day?

I guess I’m lucky in that I don’t have some of the ‘worst’ symptoms of Graves. My thryoid is nodular and somewhat enlarged but I don’t have a noticeable goiter. My eyes tend to be sore and often red but they are not bulging. I’ve certainly had problems with hot, lumpy skin rashes, especially at night and embarrassingly, mostly on my arse! Lucky then that I split up with my partner late last year so there is no one to show my lumpy red arse to anyway (except my cat and she is actively disinterested!).

Must remind myself to ask the doctor about exercising. I feel like a breathless lump and want to start working with a personal trainer. Maybe some walking and some light weights would be ok? If I write it here then maybe I’ll feel committed to walking to the train station tomorrow morning (a brisk 25 minutes).

On the plus side, I actually did get off the couch a lot this weekend…cleared out a whole bunch of stuff for the council clear up…did the errands required of me by my furry mistress (food from the vet, special litter from the pet store)…and bought some new furniture in anticipation of my move in 6 weeks. All things on my ‘to do’ list for weeks, now crossed off! Now about to tackle my wardrobe…but don’t worry I’ll leave a breadcrumb trail!

R xo

In the beginning…

I was formally diagnosed with Graves Disease on the 30th of April 2008. It was a shocker of a week as just the day before we’d buried my great aunt who had finally been released from the prison of dementia at the age of 96. Certainly, throughout the pathway to diagnosis there were more than a few moments when I thought perhaps I really had lost my own mind.

I’d been symptomatic for some time but despite numerous trips to the doctor had not been diagnosed with anything in particular. She’d ordered a holter monitor test for my heart palpitations…’no conclusion’. For my ‘panic attacks and anxiety’ she prescribed anti-anxiety meds and suggested I see a therapist. For my chronic insomnia, she recommended a warm bath late at night (not being keen to prescribe sleeping meds). For my ongoing joint and muscle pain she referred me to a sports physician who recommended pilates and prescribed Voltaren. We discussed having a tyhroid test but as my TSH levels had been on the high side of good during a routine blood test 18 months prior, she contended that any problem with the thryoid was unlikely. Given how often I was presenting at her surgery with random, seemingly unconnected ailments, I was pretty sure there was by now a note attached to my file in big red letters, “Warning: hypochondriac!”. In fact, if my mother had not needed emergency medical intervention earlier this year, I probably would still be complaining of being unwell, and no closer to knowing why.

Long story short…she was found to have a massively enlarged thryoid; a goiter lying retro-sternal, pushing on her trachea and obstructing her breathing. It was still working but she was well on her way to hypothyroid…so it had to come out! Soon after, I learned that most of the women on my mother’s side of the family had also had thryoid issues.

A week or so later, I was back at the doctor’s office and this time I requested a full work up of my thryoid pathology. Blood was taken, blood work up came back. A few days later I came out of a meeting and began checking my phone messages and sure enough, there was a call from my GP. “There’s good and bad news” her recorded voice said. “The good news is, you’re not a hypochondriac. The bad news is, there’s definitely some problems with the results and most likely it’s something called Graves Disease…but we need to do more tests and I’ve made an appointment for you to have an ultrasound and go see an endocrinologist.” And then I went back into meetings and tried not to think about the implications of her message, not knowing what Graves Disease was, and hoping it was that and not anything worse.