“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!

2-0

Updates….

My sister is doing well post surgery and they were able to preserve her kidney although she lost her spleen and a chunk of muscle.  We’re relieved there were no nasty surprises!  Next steps are recovery and aggressive radiation therapy.  She’ll be in hospital for a couple of weeks.  But this is good under the circumstances.

My endo called this morning and I am officially ‘normal’ on all counts with a TSH just creeping in at 0.6.  I’m sure there will be many who dispute that I am in any way normal….anyway, she’s allowing me to drop down to 1 x 5mg neomercazole per day for the forseeable future.  So I guess I am officially on the maintenance track…6 months into this journey.

In the meantime, all I wanna do right now is sleep……..

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

Ow!

Yesterday I got this sudden burst of energy. I don’t know where it came from. I hadn’t had a day as active as that in…months! So many things I was procrastinating about got done. I finished all my unpacking (having moved 2 months ago). I folded and put away baskets of clothes (although when I employ logic..i.e. if I wear the clothes they’ll end up in the basket eventually anyway so I wonder why we do this chore). I even got out my lawn trimmer and trimmed (you guessed it!) my new lawn. When I first picked up that piece of equipment I thought “Oh thats lighter than I thought”. About 6 minutes of grass slashing and industrial levels of vibration later, I was finding it really hard to keep ahold of the trimmmer. It was all I could do to finish the job. It was hard! My arms felt like lead. When I was done they had no flexibility and took some time before I could really feel anything else. Today…it feels like I’ve been lifting weights in my sleep. I used to be really fit…now I struggle to trim the lawn for 15 minutes without feeling like a cripple the next day. It really highlights how sedentary my life has become since Graves came into my life.

Have just emailed a personal trainer explaining my condition and what I need…strength! I’d also like to get rid of the extra 30lbs I’ve managed to stack on over the past year. I wonder if my metabolism will allow me to do that?

And in the meantime, sitting here, writing this…I can feel my heart doing little flips. I really hope the endo is right when she says I’ll lose that soon! She offered a mild dose of beta blockers but that feels like an extreme measure to me. My blood pressure is on the low side, so I know my heart is ok, even if it rudely intrudes on my thoughts. Feeling that does make me wonder how much I can actually do, exercise wise. I guess I’ll have to start slow, track everything, see how it goes! I don’t expect to ever run marathons, but maybe next time I can trim the lawn without wanting to cut both my arms off the next day!

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!

Can’t have a simple sore throat anymore!

Yesterday I woke feeling a little…off. And as the day went by I could feel the telltate signs of a head cold coming on. Woke up at 3am this morning with a throat that felt like I’d been swallowing razor blades. So…bearing in mind the warnings of my Dr., rang her office as early as I could. I sort of assumed she’d say something like “See how you feel tomorrow” but no. Turns out they take this sore throat thing very seriously. I had to go get a full blood test as soon as possible and make sure they process it urgently. This is to check there’s nothing funny going on with my white blood cells. So currently waiting on results which should be back in the next hour or so. Of course in waiting I’m feeling better – throat feeling a little better, no fever. Really tired but then I didn’t sleep well. Work is not thrilled I’m off sick…especially as I only have a week to go and I’m done with them (yay!).

I’m also having some intense tingling in my left hand that seems to have started at the same time as my increase in meds. When I talk to the Dr later I’ll ask them what they think this is. My GP looked up drug interactions but couldn’t find it so hopefully the endo will know more.

OMG all the dramz! Ready for a holiday.

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!

Does dog walking pay the mortgage?

I work in a pretty high stress environment, responsible for spending millions of dollars of someone elses money. It’s a young workforce and I’m already on the older end. I earn a good salary but I sometimes find myself daydreaming about doing other, less stressful things like dog walking & cat sitting, or running a kitchenware shop (I worked in one for a while and loved it!). The endocrinologist told me that some of her patients had gone into spontaneous remission following a change of career. Yesterday was particularly stressful and I ended up in tears in front of my boss. I’m not sure which of us was more shocked! Got my period today and perhaps a sign the drugs are working…they are as heavy and as painful as they were years ago (i.e. very heavy and very painful). I treated the pain with a chunky sized bar of chocolate with hazelnuts and I DO feel better ;-> . Walked the 20 minutes from the train to work today and yesterday…it’s a start!