Me ... today

Today's prompt for the Photo a day challenge I play is "You" so I thought I would vent a bit here with the pic I have selected for that...
I want to be strong.... like the tree
I want my roots to be deep... like the tree
I want my arms to be wide.... like the tree
I want to be flexible, bending with the wind when I need to ...like the tree
I want to give back to my world.... like the tree
I want my seedlings to grow and flourish... like my tree
I want to provide shelter and comfort to those who need it.... like the redgum
I want to live a long long life like the redgum.... and when my time is done... to become part of the universe again
  I can work towards that.... regardless of time

The waiting

Today was full of waiting... 

Waiting for the CT scanners to be ready and have a gap to fit me in.

Waiting for the nurses to jab me and probe me...  Denosumab jab and dexmethasone drip... Then leave the cannula in to head to radiology. The lovely nurses put a dressing on it, so I wouldn't bump it on anything... It was a bit sore... But I didn't faint! Woot!

Then waiting in the imaging waitin room... Fill out the paperwork, yes I've had a CT scan before with contrast, no I have not had any issues with the contrast solution...

Then into the room with the donut machine... Hehehe if only. At least all I had to take off were my earrings, ok that was a bit tricky with a bandaged hand! One scan then the contrast dye was injected into the cannula. Head on the foam pillow... Don't move..LOL

CT scan done....Then waiting to make sure there is no reaction from the contrast... All good, but yuck, I could still see my load in the cannula tubes...ewwwwww

It was a long nervous wait, finally got the call at 5pm, but it showed nothing...

He is still worried about the ongoing headaches, and I need to call back if I am still getting them over the next week, then it will be up to an MRI which is more detailed than the CT scan, which usually picks up up to 95% of mets. So now, we wait some more...

The interesting thing is I was given the dexmethasone to relieve any pressure there may be on the brain... After the Dex IV the head pain did subside ...hmmm but I forgot to tell him, as I was at the shops when he called......so Panadol osteo an endone to dull the pain, with some aromatherapy oils to help. Peppermint, basil, lavender and rosemary in an oil roller.

Here we are again

So, in for my denosumab, it's been a shit 4 weeks...the migraines are hanging around, and have even had to have maxalon to stem the nausea.
The physio has been working on my neck and hips...magic...I can walk without limp, and can turn my head woot! Still no relief from migraines though.
Tell the nurse about the migraines, then the onc, and the ball is now rolling on an urgent CT scan..and a drip of my least favourite drug in the world...dexamethasone.
So now just waiting to go up for the scan!

Purple is for cyto toxic.... Oh joy, and that goes into my body!!!

Headache

I have had more migraine in the past 3 weeks than I have had in my life...leaving me a bit scared.

Of course, I have consulted Dr Google, and now I am more scared.... Massive debilitating migraines are a symptom of Brain Mets... With dizziness, and a feeling of being just off centre also... Yes, well couldn't they just be migraines from being dehydrated...after all the massive sweats... 

Ah well, I have my Cabrini appt on Thursday...so will make sure I let the oncologist know, and will worry about what is causing the pain when I see him...

I did wonder if the headaches/ migraine was coming from stress in my neck....so I have been having the physio work on this as well as my hips.

4 weeks goes so fast

Here I am, back at cabrini day oncology, for my 4 weekly denosumab jab! Miserable day outside, so peaceful in here, waiting to go in.
This month I can really feel the muscle pain from the rads. Feeling mega tired, but trying to work through it. Been walking more, and perhaps that has been causing my hip pain. I noticed yesterday that the painful area.of.my hip was also hot! Hmmmm.
Well, should have been a quick jab and out...but I wanted to see the onc, to see what he thought about the pain and heat.

my files and the nurse getting the denosumab


So off for an xray of my hip and pelvis....allgood, no evidence of further metastases, as i found  out the next day. i can start physio treatment to hopefully alleviate the muscle pain
!

Milestone....going strong

October 3rd....I turned 50...wow...at the start of the year I wanted a big 50th bash....but now that seemed too much effort, and I preferred to spend time with those close to me.

Still just a number...I have been busy celebrating life. 

An evening in town to see The Graduate with my wonderful man, also celebrating 25 years marriage.

Got my motorbike licence at last, no more L plates yay!

Back at work, and plodding away, it's a long term, and I'm already tired!

Blood test yesterday, xgeva next week... I am a bit concerned with my pain...particularly in my hip/lower back, but I have endone, and am taking that in the evenings, which gives me enough pain relief to go for a walk with Michael and Dexter. I love this time together, I love creating wonderful memories together.

I have been taking krill oil, and Wow, the bone and arthritis pain has hugely diminished, so now I can isolate my pain to more muscular. Probably from the rads! Although across my lower back are some tender spots. So now I can't work out if my muscle aches are purely from the rads, or exacerbated by the walks, a bit of both or?

So carrying on......

Ups and downs

IMy last post I felt had to be upbeat, as I wanted th focus on the positive, even though I was feeling bleagh!
It had been a crazy busy term at work. With my room being moved, I felt I was going backwards more than forwards, with stuff having to be moved sooner than anticipated, and the old room being knocked down arghhh! Chaos reigned supreme!
I was moving 40 years of stuff, trolley by trolley, lifting more than I should, totally whacked! Then I had a literal run in with a student who ran into my cancer stricken arm, causing extreme pain! Many tears, more endone and panadol osteo than I had taken in ages.
So sore hips, arms, overwork, feeling unsupported, run down, end of term, I was a mess.
Thankfully the term ended, and my clever sisters booked a weekend on Bribie in Queensland! Just what I needed. Chilled, laughter, good food and drinks! Great memories!

I had been attempting the bikram 4x4 challenge and was doing well until my meltdown...so I let it go... But 1 day back from my weekend away and back at bikram. Felt awesome! And I even managed to briefly balance on both legs in standing bow. Whoot, as well as touching my head on the floor!
Feeling great only a few joint aches which have been massively improved with starting red krill with glucosamine!
On top of things, and tumour markers down to 23 all good! Brilliant, just had my denosumab shot, everything is going well. Life is good.

Getting on with living

Well, the good news is for the past 4 months my tumour markers have been reducing. So they have gone from 120, to 80, to 40 , to 30, which they say is now a normal level. The oncologist says if there was a textbook response to treatment I am it. Still on xgeva injection every 4 week's, and the rads are finally doing their work and minimising the pain. The worst pain I get now is when I over do things! So heading towards remission I hope. Only having endone in the evening, and paradol osteo now and then.
Life is good..still feels surreal, how can I feel so good, and be so sick? A bit like the phoney war!

One step at a time

Well working on the positives....

Having a two week break was well needed....very quiet and restful.

Saw my rads onc, she confirmed the rash on my arm was most likely from the rads. It cleared p over the following week, and I finally got back to Bikram...yay.

Had my 3rd denosumub jab, and I thought things were going great news was my t-markers were down for the first time in nearly a year...woot

Then they went to take some blood....the nurse was having some trouble....I was focussing on my breathing.... And then things started going black...so I rested my head back in the chair...next thing I was surrounded by nurses asking if I was ok...doing blood pressure obs...wow...the numbers were right down from a few minutes earlier... Not usually one to swoon.....so I had to hang around longer after they found a vein and a gun nurse to take the blood. Hmmmm not looking forward to the next one at the path lab near home.

All good now.... Still incredible aches in my legs and feet....hip pain is subsiding, and my arm has good days and bad...depending on whether I remember to not use it so much...

Week one of the new term is done and going well...feeling on top of it, well as much as I can... Feeling supported ta work.

Have finally told my closest girl friends...that was hard....but at least I was able to tell them the good news about the markers....

Looking forward to a weekend of escape at the races....going to be cold and wet...brrrr....and good feeling alive.

Cancer sucks

I lost a friend today...her battle with the bastard C is over. She only found out she had cancer at the end of last year, they found secondaries first, lumps in her skin...took a while to find the primary...bowel cancer. It took 6 months...she didn't want chemo, but had it anyway...

She was an amazing woman, strong, very private and focused on her work and it took this bastard to break her. I had yesterday and today off work....so very tired just sleeping...I was glad not to be at work today to hear the news. I had heard she was in palliative care earlier in the week, and wasn't looking great, but had hoped she would have longer.... But I think she must have been ready to go...and leave behind the pain...

Too soon, she had more to tell in her story...

Hmmmm....burns

Who knew....two weeks after the ourselves of rads I end up it burns on my belly...sad face ...thought at first it was sweat rash from Bikram...but as I never had that I the 9 months I  have been doing it ... Ding in...I worked out ...and confirmed with a chat with  friend who has had a fair bit of radiation... She reminded me not to use oils like vitamin E...which I had been using...

So hopefully, now I am treating it with better stuff it ill improve....so itchy. Yay for QV

Also incredibly tired...came home yesterday and slept for 2 hours...then did Zumba with my girl! Week and 2 days til hols...can't wait... Still too much pain...

Is pain the new normal?

Seems to be pain and pain management seems to be constantly on my mind at the moment...the weekend was a day longer with report writing day on Friday...so I enjoyed being able to have a 10am session of Bikram...wonderful....and I was energised enough to finish my reports...yay...and only had an endone when I went to bed...

Saturday...went to the 8am Bikram class, as I was up in time...I wasn't going to stress if I missed it...but was happy that I made it...got home and again pain was not on my mind got stuck into some shopping, cleaning...and cooking, before settling in to watch the V8 super cars...standing in the kitchen took its toll, endone at bedtime...most of the day had been pain free...

Sunday...could I do it? Yeah baby...back at Bikram 8am...woot woo!!! My body loves he heat...I am getting further into the stretches and balancing better. I don't know what it is that my body is loving about Bikram... But I love that I get time pain free...and full of energy...I even scrubbed the kids bathroom from top to bottom to prepare for my sister coming to stay later this week! Probably pushed myself a bit far with the cleaning....and then cooking...

 Made a magnificent roast dinner...perfect veggies and moving them to the tale promptly dropped the whole dish of them...then had a total melt down...I couldn't stop crying...couldn't move....Pyrex dish smashed, potatoes, parsnip, beet root, and pumpkin...nothing hurt, just couldn't move and everything just turned to tears.... My beautiful girl and hubby moved me away, and cleaned up... I was devastated over spilt veggies... Today I can't believe it ... I guess it all just came out...my two boys...hid. LOL

Well, pain free weekend came to an end back at work today...pain in hip and arm, I had to take an endone in the morning...had another when I got home, and about to head to bed with another...

I did go for a walk this evening...the first in a while...trying to keep active...wondering if I am overdoing it...but trying to fight this....

End of the week

So this I guess will become my new normal....pain, the shadow of a limited future hanging over me...and tiredness. But still I smile... I have been asked why.... Well why not? I can't change the cards I have been dealt....I can however play a bloody good hand...

The rads, I was told would cause a flare up of pain in the affected bones, and then the pain would cease....so I am going through that pain thing at the moment...and looking forward to the relief that is coming....

Right now though, I am sitting in the car, in the rain, watching my firstborn as he finishes his shift at work...and smiling. He is so clever, and sensible, and looking forward to the Presentation Ball next weekend, so am I .... He will be so handsome, and his partner...long term girlfriend, will be beautiful. I am making the most of every special event I have...trying not to cry over the ones I may miss...but that is a long way off... Staying positive folks....

Looking forward to Bikram in the morning.

Bikram Yoga and Pain Management

October last year I started doing Bikram Yoga, as a new place had opened just around the corner from home...yay...well I really enjoy yoga, and wanted to do a class, but had not done any Bikram (hot yoga) before, I love the heat, but wasn't sure I would enjoy the class, I went along with an open mind, and fairly well hydrated...I thought!

Wow, heavy, intense, amazing feeling....I was in love... It certainly wouldn't suit everyone, but I felt a good fit. Even though I am fairly flexible many of the poses were challenging, in a good way...it meant I wasn't just going along...I was having to really extend myself....I loved it.

So...we skip a few months, I continue with Bikram, once or twice a week, would love to do more...but am so tired when I get home from work, and I am doing zumba and Pilates mid-week...trying to get a run in, and family life...as well as work....love being able to go more frequently during the school holidays...and I am getting compliments on how fit and healthy I am looking....

I feel my balance is improving - I had a fall and rolled my ankle and strained my reconstructed knee, which is still annoying me, but the bone scan was ok, so it's just osteo arthritis, and ligament damage.

Told my onc the exercise I was doing, and he was happy that I continue with it.

When I started the radiation this time, I was told it wouldn't burn me as much as the last lot did, as that was targeted closer to the skin, so as long as there were no immediate skin issues Bikram should be fine.

What I have noticed is I don't NEED to take pain relief medication when I have done a Bikram session. So if I do a morning session, I may only need to take an endone before bed...I was able to get to two sessions during my treatment so far, and on both occasions I felt great afterwards. The weekend I wasn't able to make it I struggled with pain. And it's the same during the week when I can't make it.

I double checked with my rads onc this morning, and she was happy with how I was managing, I don't do all of the postures, there are some that put too much strain on my arm and hips, but others that work into those areas to provide relief.... Yesterday's session was a challenge with the diarrhoea hovering around, and minor period pain like issues... But I had a few extra rest sessions during the class, and was on top of things when I left. Today I have a headache hanging around, could be dehydration...more water needed stat! Of course more sinister things now hang around in the back of my mind....

Of course Bikram yoga is not for everyone, I have tried to find medical articles...but nothing out there is substantial one way or the other. As long as it feels good, has good effect in managing my pain I will continue... My awesome Bikram studio has given me a complimentary pass, so I can go as needed, which is really fantastic, as cost cutting would have seen this go first!

So hoping to keep going, and repair some of my injured body, revitalise and recharge. Have given up on the rosé hip vital, still going with the glucosamine....must get back to the physio about my knee....

One more radiation treatment tomorrow, then back to work....

Counting down to holidays! The rads should have their effect by then...woot...and more time for Bikram 

Rads...again

Ahhh back to the rads onc.... Many familiar faces, and new tatts...bugger, just dots to line me up.... So I couldn't use the line... Was just in Frankston and left with a tramp stamp...LOL

A dot on my pubic line, one on each hip and one on my inside elbow.

That was over a week ago...

Started the course of 5 radiation treatments last Wednesday. So far so good, although, I was warned the area in the pelvis could cause diarrhoea if it clipped the bowel, or intestine...which is did, as I found out today... Guess I won't be taking a coloxyl and senna tonight.

I have been keeping busy, presenting at conferences the past two weekends, and also playing at Sandown last weekend. I told the flag chiefs the situation...they were understandably upset, but were happy that I will want to take on more training responsibilities...

The conferences have been good... Yesterday was eLearning, and I had a full on day, found out one of my twitter friends who presents and is an inspiring educator is going through his own cancer battle with stage 4 melanoma... Fucking cancer just sucks!!!!

Last night I had to build up the guts to tell my mum and sisters, as my Queensland sister was down for the weekend...that was hard.... But hopefully it will calm down...Mum will be the hardest...we will keep her at a needs to know level!

My sisters rock... After being very upset last night they are back on top of things today...working through questions and clarifying things in their own minds.... Next is my brother...arghhh...he and his lovely wife are dealing with her mum's cancer...so that will be another needs to know thing...

Hehehe, I don't usually see myself in full flight, but this was shared on Twitter as I presented my speed sharing bits.... After just having presented two 45 minute workshops I was pretty whacked...

Wow....

I took my first end one last night....had the most wonderful pain free nights sleep...down side is I now know how much pain I am in....sort of puts it into perspective... Not game to drive with it yet....but just had tonight's, and about to head to bed.
Tonight's zumba was hard...the pain in my right hip/coccyx made things difficult.... I had been taking Panadol Osteo during the day, but not really touching it....
Managing the pain, quality of life....it's all a bit hard....but I am feeling upbeat about everything... I think perhaps because we are moving forward with treatment.

Plan of attack

Well I now have a plan of attack.... The onc was confused about the mets showing on the one scan I my hips, as I had a CT scan late last year on chest abdo and pelvis, and it showed no evidence of anything nasty...so he re-checked the bone scans....and agreed there was something there...but he has many patients who live long lives....even to 25 years...with bone mets...we just have to make sure it spreads no further.
He was concerned about the pain... So prescribed some endone, hehehe he had to call up to get authorisation as it's a narcotic....will see how we go with that, as the 6 hourly Panadol Osteo was barely touching the pain...although I had a couple of nurofen plus when I got home and that seems to be doing the trick at the moment. Will take some endone before bed.

Stopping Tamoxifen and starting Femara, which is an aromatase inhibitor;
Aromatase inhibitors are a class of drugs used in the treatment of breast cancer and ovarian cancer in postmenopausal women. AIs may also be used off-label to treat or prevent gynaecomastia in men. Aromatase is the enzyme that synthesizes estrogen. Wikipedia
I didn't think I was post menopausal....ahhh well... I am in a good place in my head at least!

And the Rads Onc will get back to me tomorrow with sorting out when we start radiation to the affected areas. The radiation is to reduce pain...the pain reduction is a big focus.... I guess that is all a part of maintaining quality of life... Which is the main part of staying alive and fighting this shit!

The other part of my treatment is the Denosumab, which is like spakfilla for the bones I guess..
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-denosumab
This will be injected monthly...ahhh fun fun. Monthly trips to Cabrini begin on Thursday this week... I want to get started ASAP.

So that all made sense, it was what I was expecting...then home for the hardest part...telling the kids.
My babies made it easy for me...they are so grown up and mature...they took it in their stride... 
I focused on the fact that I would be getting treatment to help manage my pain, and it is a long term 
thing. 
I think keeping the discussions light, and the communication open is very important. We also mentioned letting school know, and that they may like to talk to a friend or counsellor.
So now I am on the path to kicking this bastard to the kerb...and aim for remission.

Connections up and down

You really start to rely on this tech stuff.... So when the modem is offline...panic fills the house....LOL...
Well I have helped my wonderful hubby to get some control, and start to know what to do when the tech stops working.... I am the tech nerd/geek in the house...apart from the kids...so I guided him in what needed to be done...ring the ISP...and then I went to Pilates.
He was on the phone with the tech when I got back...had been for an hour...but yeehaa we are reconnected....they still don't know what is causing the issues...ISP blames phone company and vice versa.
These are the little things I do that will be missed, so I am glad he has taken care of it. I have taught him to fish...instead of catching fish for him...

It's good when silly little things block all other thoughts....everything seems to ache, and I'm tired....have a long day at work tomorrow....but a half day on Friday... I am taking Panadol Osteo for the aches in my arm....every time I lift something it aches...so am quickly training myself to use my left arm. Hips are stiff, but not the degree of pain the arm is.... Hmmmmm Monday Monday

Sinking in

I am feeling remarkably calm...angry that I have been dealt this hand, and teary when I think about not being there for my beautiful children at their events down the track...weddings, babies...but then hmmm calm, just getting on with it to ensure my story has a few more chapters.
Sitting in Melbourne,'s magnificent autumn sunshine makes everything fade away, and not real...I guess it will sink in more, when I see the onc in a week.

Woman on a mission

So much to do.....unknown but limited time....
Last year I had to clean up my dad's place after he passed away... There was so much stuff... He could have sorted before he went... He had melanoma....but had over two years....knowing he was on a limited timeframe.... I don't want to leave my mess...and I am not a tidy person...for my loved ones...
So am starting wiht my wardrobe....being totally ruthless...hahaha...if it is not perfect, doesn't fit out it goes...
Yesterday I had a beer or many....first drink since I was told...pretty happy about that..as I need a clear head to get through this...but it was a good day to talk openly and frankly with Michael... His head is spinning just as much...worrying about being left with 3 kids, and his own grief of losing a soulmate...my bit is easy...I just go to sleep...he has to pick up the pieces. So I need to make it as easy for him as I can... He is my rock!

Woman on a Mission

It’s time for me to make a move

And I know what i gotta do

Coz I got everything to prove

I got a plan I’m sticking to

…

The word is that I’m over doubt

But I don’t let it get me down

I ain’t nobody’s push around

If they could only see me now

There’s only one thing on my mind

And I'm running out of time

I'm coming through so get out of the way

I am a woman on a mission, woah

Nothing can stop me, I’m stronger than ever

I wanna see this through

I am a woman on a mission, woah

Whatever it takes I will do what I gotta do

I'm gonna lay it on the line

I won't give up without a fight

Coz I can see the finish line

Won't stop till I make you mine

To read the writing on the wall 

I'm ready here and standing tall

So people think they know it all

So I guess I'll have to show them all

There’s only one thing on my mind

And I'm running out of time

I'm coming through so get out of the way

I am a woman on a mission, woah

Nothing can stop me, I’m stronger than ever

I wanna see this through

I am a woman on a mission, woah

Whatever it takes I will do what I gotta do

There’s only one thing on my mind

And I'm running out of time

I'm coming through so get out of the way

I am a woman on a mission, woah

Nothing can stop me, I’m stronger than ever

I wanna see this through

I am a woman on a mission, woah

Whatever it takes I will do what I gotta do

I'm gonna lay it on the line

I won't give up without a fight

Coz I can see the finish line

Won't stop till I make you mine

To read the writing on the wall 

I'm ready here and standing tall

So people think they know it all

So I guess I'll have to show them all

There’s only one thing on my mind

And I'm running out of time

I'm coming through so get out of the way

I am a woman on a mission, woah

Nothing can stop me, I’m stronger than ever

I wanna see this through

I am a woman on a mission, woah

Whatever it takes I will do what I gotta do

Bugger

 I did just want 2010 to just go away and be a bad dream memory
2011 was incredibly tiring... the long drive, playing pick up where I left off... running senior classes and having a leadership position...crazy... but I worked through it... working full time...
2012... energy levels slowly increased, started zumba and then pilates again and weights and cardio express session... and later in the year Bikram yoga (the hot one... I love it).Starting to feel fitter and healthier... more energy... tired and sore, which I put down to the amount of exercise... Did the Pink Triathlon in 2012 and 2013... as well as the Mothers Day Classic in 2012...
Had a new boss... gave me hell....arghhhh tried to leave but couldn't find anything...
Other things were going well... then I had my six monthly blood test...and Onc check... hmmmm tumour markers are up... any pains? Well... whole body aches... but I put that down to Tamoxifen and exercise. So off for a CT scan, chest and abdo... all good. Pelvic ultrasound... all good...colonoscopy (overdue) removed a polyp, but all good.... apparently I am an enigma... the bloods keep showing raised markers...
Had my mammogram in April 2013... and mentioned the raised t-markers, and that there was some pain in my forearm... so surgeon sent me off for a bone scan. But see if you can hurry it, as I am going away for 2 weeks he says...
Well there started the fun... got into Monash, had the scans... was the same as the bone scan I had in 2010, so thought nothing of it... Get home... message from Radiology... oops forgot to scan the sore arm... can I go to Berwick tomorrow... sure... off I go again... at least there was still enough radiation in my body so I didn't have to do that again..
So scans just of my arms... questions...have I ever had a broken arm... nope...ahh ok... wait outside... next someone else is ushering me in for x-rays... this is where I know what is coming.
The tech hands over the films, and gives me "that" look, and arghhhhh 'wishes me luck'.... I know then before even opening the films what is coming...
well... I missed the Doctor before he left... so have been waiting to find out for 2 weeks... well to confirm what I suspected... and what was causing my t markers to be up.... my self diagnosis from the bone scan was pretty spot on... bone mets...
I knew it would come back, the whole node involvement thing... but I thought I would get more than 2 1/2 years before having to put my big girl panties back on!!!

Funny thing is the pain in my arm, which I finally mentioned to my surgeon at the last mammogram check has been there for a while, but as I have been so active, with muscle soreness from exercise and weights I was ignoring it as just sore muscles... but it's in my forearm, with a couple in my pelvis as well...
Just a bit numb.... as I went off to claim my medicare stuff I was walking through the shopping centre thinking "dead man walking" I know morose sense of humour... but I am not ready for my story to end...I have so much I want to do... I have my 3 babies...(ok 2 of them are now over 6 ft, but still my babies..) I want to be a part of their stories for a long time to come yet.

the black spots on my hands are arthritis...

So...the little black mark that is bone mets, in my right arm.

My arm has had pain... but not so much my pelvis... which is where the other two spots are... haven't mentioned these ones to DH yet...

So.... here we go for round 2... apparently being in the bones is better than in the organs... but I had hoped to have more than 3 years before this shit came back.....

Pulling on the big girl panties... and going to fight this one hard...