“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?

Another year older and hopefully a little bit wiser

So here I am finishing off my birthday weekend.  Even though I started my new fitness and eating plan this week, I did negotiate with my trainer to have this first weekend off.  Yes I’ve eaten too much, drunk too much…and generally feel like a blob…an older blob.  Anyway, there is always tomorrow.

I’m reminded of my birthday last year when my then boyfriend took me to a beautiful little French restaurant.  He brought flowers and we drank champagne.  It really was the most perfect ‘date’ I ever had.

Things went wrong between us not too long after that.  We had some stupid fights that didn’t seem to have either a beginning or an end and I felt him little by little pulling away from the relationship.  He’d come from a quiet, polite family who don’t express themselves, so he really hated any kind of conflict.  But even up until the last moments he swore everything was ok, but when it came down to it, things couldn’t be saved and we went from romantic nights at the little French bistro, to not being able to be in the same room together, in a matter of weeks if not days.

Now I don’t think that Graves was what finished us off as there were plenty of other mitigating factors, but I certainly know it contributed.  Of course at the time we had no idea.  I definitely was having bad headaches, trouble sleeping and what we thought was a lot of anxiety.  My friends kept telling me to dump him because obviously the relationship was causing that…or so it seemed.  The week we split up was when the doctor prescribed anxiety medication for me….seemed like a reasonable assumption that I’d be anxious in those circumstances.  It didn’t occur to her or to me, to test my thyroid.

In some ways I’m glad he wasn’t around then because my symptoms certainly got worse before they got better and at the end of the day, I don’t think he had the stamina or the understanding to help me through the cranky days (weeks?) and the frustration.  It was almost better I think to be alone so neither did I have to consider him (selfish?  yes I guess so).  We don’t even talk any more.

So this birthday I’m very, very single.  Of course I’ve got great friends and a wonderful family but sometimes it would be nice to have a stronger set of arms around the house…I can think of all sorts of uses (jam jars, lawn trimming…).

Anyway…I guess the one thing I’ve learned after this year is to never take your health for granted.  At the end of the day, it really is all you’ve got.

The only symptom worth getting and I didn’t get it

I’m talking about ‘unexplained weight loss’.  And I’m only being slightly facetious.

Instead, I’ve had weight gain.  40lbs of it.   And the explanation is pretty clear.  I’ve been eating as if it were an Olympic sport and I’m the gold medal hope of a nation.  And not just eating, but eating food I previously didn’t consider to be actual food.  Like frozen crumbed chicken (not eaten until 30+ minutes in the oven of course…I’m not that pathetic!) or muffins (which I could never understand as a breakfast food…it’s cake people!).  The sorts of things I would previously have avoided like anything.  And it’s not that I don’t understand nutrition.  In fact I’ve studied physiology and nutrition at College so I’m hardly ignorant about the composition of food.  The endocrinologist did say that with treatment hopefully my appetite would normalise.  I’m just not sure she understands how committed I’ve been to abnormalising that part of my lifestyle and how hard it’s going to be to bring it under control!

When I was given the Graves diagnosis (made all the more complicated by the fact that I was stacking on, not taking off, weight) I think I subconsciously took that as the OK to start shovelling all manner of crap into my mouth.  If I’m sick anyway, and I can’t control it, why bother looking after myself?  And exercise?  Well that wasn’t realistic given the muscular pain, the shortness of breath, the palpitations.  And so I ate, and didn’t move and a few months later I’m bursting out of my clothes whilst people look at me with one eyebrow dubiously raised as I say “No really, my thryoid is too fast”.

I went to a family funeral last month and saw some relatives I haven’t seen in years.  Some may remember that one of my sisters has cancer.  Physically, she’s doing well (mentally has up and down days) and looks pretty good, or at least a lot better than someone with her troubles should look.  We nearly pee’d our pants laughing when we realised everyone at the funeral would be looking at the two of us and muttering “She doesn’t look like she’s got cancer.  And the other one…look at how fat she is….she can’t possibly be hyperthyroid.”  Gotta laugh I suppose.

As of yesterday I’ve committed to the next few months with a personal trainer.  I’ll see her three times a week (2 x light cardio, 1 x weights plus ‘homework’) and she’ll monitor my food intake.  At regular intervals we’ll assess progress.  Even if I don’t lose stacks of weight, hopefully I can regain strength (last night, 5 girlie push ups were all I could manage and this is after years of being able to give 20 or 50 man style push ups no problem) and motivation to have better general health.  I want to turn that heavy ‘blech’ feeling into ‘feeling pretty good’.

My trainer is a petite blond (aren’t they all) with a perky disposition (hey, you can do it!) and she’s so used to pep talking that even her normal conversation sounds like yelling.  I’ve told her about the Graves, told her I’ll complain and moan all the way, but to ignore me for the most part and keep me on the straight and narrow.  It’s not a cheap commitment and I know I’m lucky I can afford this little kickstart.  I see this as an investment into a better future hence why I can justify the expense.

I called my friend about the ‘contest’ and told him I wasn’t weighing in this week (he answered “Oh thank god!  I’ve been a pig!”) but told him about my new commitment.  In order to win a $150 voucher I’m going to spend much, much more than that.  He completely misunderestimates just how competitive I can be!

Has anyone else stacked on the lbs and kgs with Graves?  How did you handle it?

R xo

DIY Graves treatment?

I wonder about those people who say they’ve ‘cured’ themselves of Graves without any kind of medical or surgical intervention. What do they know that I don’t? Does anyone know?

As I understand it, there is no ‘cure’ for Graves, only treatment and hopefully, remission. I know I can help myself by being careful about things like diet (limit iodine and stimulants) and stress. But I also know that if I’d waited for those things to work, and eschewed medication I’d be in a bad bad way by now. If I was still here at all!

By the time my Graves was diagnosed I’d obviously had it for some time and was ‘highly symptomatic’, even more than my blood work would suggest. My anxiety levels were ruining my life – relationships were difficult, work was a horror. The pain in my muscles (especially my arms and my hands) was indescribable. And of course the heart palpitations were really scary. And I almost never slept. I just can’t imagine wanting to self-treat under those circumstances. Of course when I was diagnosed I read everything I could find on the implications of treatment and not being treated. My conclusion? Bring on the meds for me!

I think the greatest challenge for me in the next couple of months is going to be maintaining a healthier, less stressful lifestyle. It’d be easy to fall back into the trap of being Superwoman again, while I’m feeling so much better.

My new mantra (repeat after me)…”Good enough is ok most of the time.”

“Go home on time” is my other new philosophy.

And so to bed.

Back in the land of the living

Have just finished a week at my new job. And who would have thought it? Everyone has been really nice, really welcoming. No ‘issues’ or ‘attitude’ like the people at my last job. I’m ‘in training’ so haven’t yet been placed under pressure but so far, so good. In fact, in some respects, it feels like they are trying to impress me. Nothing seems too much trouble for them, they’re keen to be social, people laugh in the office etc. My boss is very ‘naughty’ and un-PC (which I appreciate) and his team all seem to have genuine affection for each other. I’m really pleased I accepted the role and looking forward to getting into some ‘real’ work and becoming part of the fabric of the workplace. It feels good.

I’ve not had too many Graves symptoms either this week. A few heart flips perhaps. I was remembering how my left hand used to be in an arthritic type pain almost constantly… that seems to have diminished to almost nothing. I’m sleeping pretty well…even my kitteh was up before me this morning (she’s an odd’un in that she doesn’t wake me and likes to sleep in until 11ish most days). I feel like my mind is more clear and I’m able to just…get stuff done. But…I’ve been really bad at managing my eating and haven’t done any significant exercise at all. Ah well…I’ve made an appointment with a trainer for Monday and told her I need help ‘getting strong’. I wore a mid sized heel this week…first time in ages…and I spent most of the day being completely paranoid because I don’t feel like my knees are being supported by my muscles and I’m terrified of injury. Once I start with weights I should regain some confidence I hope! She’s going to monitor my diet as well. I definitely need someone to help me find motivation as I don’t think I can use Graves much longer as the excuse (feeling too ‘normal’ for that to be true!). A male friend has challenged me to get healthy and lose weight before Christmas (and of course, for men, everything has to be competitive). As I remember it, there’s nothing in the rules that says I can’t hire help! And there’s a $150 voucher at the end of this that I want to win (even though I realise I’m going to spend a LOT more than that on the process but thats not the point…).

This week I learned I’ve been nominated for some industry awards based on some past projects…very cool! I’m not taking it too seriously but it will be fun to dress up for the dinner when they announce the winners later this year. It’s interesting…I did the work in the period when I was suffering the worst symptoms of Graves, although at the time I didn’t know that was what I was experiencing. Here’s hoping that now things are under control, I still have those little flashes of creative genius!

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!

Another day, another blood test

So home from a long, long day. A day that’s stretched over about 36 hours in fact and involved an overnight stay to see family. Boy is my ‘kitteh’ annoyed! Still, I had left her with about 9 days worth of food, cat milk, water, clean litter…but she did give me a fairly raucous homecoming (she doesn’t meow so much as screech at me) and lots of head butts. I often take her with me but this time my sister had brought along her little yappypants dog (he’s quite sweet but misunderstood) so she had to stay home. They don’t get along.

My next blood test is taken tomorrow. I think this is maybe the 7th (?) since this all began so I’m getting pretty good at it. Then I see the endo early next week. I’d love to see some improvement but in my heart (and in my heart) I suspect that won’t be the case. I’m still experiencing palpitations and shortness of breath on occasion. After many hours on the road today my sister commented that I all of a sudden seemed to deflate and my breathing was almost asthmatic…very wheezy. I think it’s just being over tired, not able to shake this head cold, same old same old….will make sure I get a full look over at the docs.

In the middle of two weeks off (yay!) so keeping my stress levels low and my sanity on track…or as much as possible anyway!

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!

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.