“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!

Ugh!

So yes it’s been a while since I posted.  Lots going on…work, family, health.  Where do I begin?

I had an early dinner (drunch?  linner?) with friends tonight and it took every piece of energy I could muster to get dressed and get over there.  It was a laugh or two so I’m glad I went but I am finding it extraordinarily hard to be motivated to do nearly anything….writing this post included!

Still ‘maintaining’ on neomercazole.  Some days I imagine I am feeling “Graves-y” (sore hands, heart flips, anxiety, insomnia) but I push this to the back of my mind because the pathology doesn’t support that.  And without medical evidence it doesn’t exist right? 

Next week I’m heading to (yet another) gyneacologist who specialises in endometriosis.  I have all the symptoms and have had them for years.  Lots of terrible pain, bloating, nausea and the list goes on.  At least two weeks out of every four since I was 11.  However…past laparoscopies and examinations have found…absolutely nothing.  My doctors think this is a good thing.  Personally, I would like them to find something to treat and then maybe I could get on with my life!  They’ve already suggested another surgery and I’m keen to impress on them that if they open me up and DON’T find anything, wake me up and tell me to go home because I ‘don’t need any treatment’ I swear I will punch the doctor in the nose!  Ok that makes me sound like I might have Munchausens or something but my point here is that if you listen to your body, you KNOW when something isn’t right and it’s OUR job to make sure we get the proper care regardless of what the so called experts say!

It occurs to me of course that this issue is not unlike the journey of the Graves sufferer.  Most of us are not diagnosed until we present with several complaints.  For me it was at least 5 separate doctor’s visits before she agreed to test my thryoid  and only then at my insistence (her rationale for not doing so being that it had been normal 12 months previously…in fact the historical evidence is that it was ramping up dramatically over the previous 3 years).

Other updates…

No weight loss but in fairness I am not being strict about my diet.  I am still exercising and gaining strength.

My sister begins a 5 week cycle of radiotherapy tomorrow which she and everyone knows is largely a “buying time” strategy but you have to don’t you?

And I need to take better care of myself!   My mission for the week is to book a massage and a pedicure!

How is it that the start of this year went by so fast and in the last month it is going…….by…….so………damn……….slowly?

Princess Perfect

I came to the realisation this past weekend that I can’t be.  Perfect that is.  It goes totally against my nature to let things slide, but if I’m to retain my sanity over the next couple of months, I’m going to have to let some things go.  Quick status update….

My sister will have surgery this week and we are hoping for no nasty surprises.

No weight loss despite dilligent exercise and adherence to diet the majority of the time…none at all.  I have to say this is pretty discouraging.  I’m trying to keep it up because despite no weight loss I am definitely stronger and have greater physical stamina just to do everyday things.  ‘Glass half full’ I guess.

Had a blood test yesterday (about 2 weeks overdue) and will get the results in a couple of days.  Hopefully my levels will be normal, including anti-bodies, and the Doctor will give me the ok to go down to 1 x 5mg neomercazole per day.  I’m crossing fingers…although my left arm and hand has been aching this week which for some reason is usually an indication of how my Graves is doing (or it might be that I’m sleeping on my left…who knows)

Waiting on a specialist appointment (2 months away) to check out why my girl’s guts are so awful right now (this situation is not new but I am definitely at the end of my rope with this one).  I’m 39 and I think I’m done with them and seeing as they are not being used have suggested I would like them out…but of course the medical folks think that makes me a bit nuts. I mean, what if I decide to have a miracle, immaculate conception baby at the overripe age of 46 despite the fact that I’ll no longer have viable eggs?  The whole thought grosses me out.  If I end up bitter and childless I’ll adopt so I have offspring to transfer my bitterness to the way every other parent transfers their issues to their children.

Really really tired the past couple of weeks.  Just can’t seem to sleep well and when I do I wake up tired.  my doctor is only somewhat sympathetic and is suggesting hypnotherapy rather than begrudgingly prescribed drugs which I have to ration for important days where I REALLY need sleep…I mean, really?!  Really?!

Ok…off to see my poor, long suffering trainer who I think doesn’t want me in his ’stats’ because I’m making his trend line point the wrong way.  Blah blah blah…another day in paradise!

Will update later this week on my sister’s status post surgery and also my blood results.

Six months since diagnosis.  Probably 2 years since becoming symptomatic.  Time flies…!

Numbers

Going to the endocronologist is a little bit like a highbrow game of bingo, and there are only a handful of numbers being played for. But if you get those numbers right then you win….something. Warm fuzzies? It’s funny too how you feel like you, the individual are responsible for achieving certain number, as if you had complete control over your physiology. If the numbers are good, you feel like you’ve achieved something. If they’re not right, you somehow feel like you didn’t work hard enough to get them right. The whole problem of course, of having an auto immune disease is that…you have no control. You wouldn’t sit around with a drip adding poisonous toxins into your own blood stream, or at least a sane person wouldn’t. But essentially thats what Graves is. And the evil genius behind it all are those pesky antibodies. The endo said to me ” I was a bit worried about you because your body wasn’t reacting the way it’s supposed to”. No kidding! But then I’ve always been a little…left of centre.

Finally my T3 is within normal. It’s at the upper end of normal but still….normal. The doc said it might take a month or so for my symptoms to catch up (I still have the odd heart palpitation , breathlessness, muscle weakness etc). She said within a few weeks I should start to find exercise somewhat easier so once I start my new job (next week) I’m going to get a trainer who can help me, especially with strength training. It’s hard to explain how weak I’ve become. I’m as ‘plushy’ as a foam sofa to use a funny phrase from a friend of mine. I used to be one of those people who did boot camps and could happily ‘drop and give me 20 man style push ups (at 8am on Saturday mornings…crazy right?!)…but not any more. Opening jam jars is hard enough! It’ll be tough but I know I feel better when I’m stronger and exercising regularly.

Meds have been reduced from 5 down to 2 carbimazole per day and I’ll stay on that regimen until October when I’ll have my next blood test and consultation (and pending those results, another in January). Apparently they’ll then review me in April next year (12 months into this journey) to see where my antibodies are at and what my chances of still having the disease are, along with potential for relapse (a 50%+ chance).

When I see the relapse numbers there’s a part of me that feels like I’m on a long journey towards a thyroidectomy ( as has my grandmother, my mother and two aunts) but I’m trying to stay positive that I might be the one for whom this rigmarole all works and I can remain surgery free!

Deja vu all over again

New blood test back and a call from my endocronologist. “No change”. I mean…what? Despite increasing the dose from 2 up to 3 x 5mg carbimazole per day…no change. My T3 is still too high and is exactly the same as 6 weeks prior. So the doctor describes me as a puzzle and has asked me to go up to 5 tablets per day. Now most of the time, the dose is decreased…not increased! Can T3 toxicosis be resistant to drug treatment?

Meanwhile, I still get heart palpitations from time to time, but not as often as before. I still have trouble sleeping but always have had. And my muscles are sore and my skin is itchy. I guess I should have anticipated a set back.

Another month, another blood test, and another doctor visit at the end of it. Sheesh!

And also by then, a new job which I’m looking forward to. Hopefully, a change of scene will do some positive things for my health. I mean…c’mon!

And the results are in

Somewhat upsetting as I was hoping to feel better by now. But as the heading says…at least I know I’m not crazy. Certainly it feels like it sometimes.

My T3 level hasn’t come down as expected and my medication has been increased to three a day, rather than two. The endocronologist puts this down to high levels of antithyroid antibodies in my blood, and her assumption that I’m under a lot of stress. Well thats the understatement of the millenium!

She asked me if I was feeling any better and I had to admit ‘not really’ and asked her about the joint and muscular pain especially in my left arm. She replied that yes, this is most likely related and finished with “You have an auto-immune disease.” like that should help me cope with everything. So I spent the rest of the day seconds away from tears, tears of frustration and self pity. I even got caught with a tear in my eye by my assistant but she kindly pretended she didn’t notice.

I’ve decided I need to leave my new job, maybe take a couple of weeks off and then look for some contract work…a low level of responsibility sounds good right now. Will need to chat to the folks in case I run out of cash but right now I feel like I need to prioritise feeling better. Also talking to my old bosses who in general are more sympathetic people (not perfect mind you but at least we all like each other!) and with luck this might be a short term financial solution for when I leave the other job.

Keeping everything croossed for better luck!

Hmnn….

In meetings all day today but the Doc left a message to say the test results weren’t as good as hoped for. She said she would call me tomorrow to discuss the ‘implications’ but essentially I have to maintain the higher drug dose until further notice. I’m wondering if ‘implications’ are things like quitting coffee and alcohol and hopefully winning lotto so I can quit my job?

More tomorrow I guess.

And another week goes by

Really really really stressful week at work. Issues. It may not be for me. Going to chat to a few trusted advisers over the next few days to try to get some perspective. Monday morning about 10am I was told I look tired and it was all I could do to suck back the tears.

Went for a whole week trying to find 30 minutes to go get a blood test and finally got some time on Friday lunchtime. So…await test results next couple of days.

Finding it almost impossible to sleep without help (valium) and have had some horrendous muscular pain in my left upper arm so went and got the ‘good stuff’ from the pharmacy this morning.

And…my sister emailed me to get my Dr’s number and then made an appointment so she can go get tested tomorrow. I feel good about that.

Not Ms Happy today. Hope my blood results make me happier!

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.