With Sadness

We are very sad to inform everybody that Georgia passed away yesterday- Tuesday 2nd October 2012. Georgia was surrounded by love & peace in her own home, as she wanted. Her humor & courageous spirit continued until the very end. We are thankful to have shared this walk alongside her. Her bravery & determination is an inspiration to everyone. May she Rest in Peace. 

Georgia's funeral service will be held on Monday the 8th October, 11am at Mill Park Baptist Church- 11 Morang Dve, Mill Park. Light refreshments to be served afterwards in the church hall.

A Reminder from Georgia Anastasiou - Love your life!

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

                                                                                                                                  Nelson Mandela

Hot Springs Heaven- 21st sep 2012

A new phase of care.....

Today was a difficult day. We found out that the tumours are growing very actively, based on last week's CT scan. It confirmed what I was feeling as my body continues to morph completely out of proportion.

The Sarcoma team believe it is time to come off the chemotherapy treatment. They also believe that further treatment may have more costs than benefits to my system which is no longer as robust. We will consider some options, but I need all of you to know all aspects under consideration are palliative from now on.

Pain managent and wellbeing will be our focus. Trust me, this is a big deal as I am beginning to be quite sore a lot of the time. The medication tends to make me quite vague and drowsy.

I am down but not out and at peace with this whole thing. Thanks to you all for continuing to travel this road with me!

Love Your Life,
Georgia

Cycle 4 underway

Hi Folks,
It's high time for an update. I have had the next lot of chemo a week ago and I am feeling OK. My pain meds have been slightly adjusted so I am feeling quite drowsy at the moment.

A big week is coming up with a CT scan on Wednesday 12 Sept. It could be a test that either keeps me on or takes me off treatment. The Dr is definitely concerned that I will probably start experiencing complications in the near future. The tumours are so large that the pressure on other organs makes this inevitable. The follow-up appointment for this will be on 19 Sept to get the verdict. 

As I walk/shuffle around, I also know that I am doing relatively well as far as mobility is concened. I need assistance some of the time, and going out shopping is definitely fun when I can do it. Last week, we used a wheel chair to get more mileage out of our trip.  I still use the walker most of the time, but can't go as far with it.

The lymphatic massages are definitely still helping to shift things around and are aslo helping with toxicity levels. I will stick to having these for sure!

I am feeling OK in general, just needing a bit more support at home with practical, hands-on jobs. Thanks to the sisters and Sarah for the constant help.

Cheers to Cousin Mary-Jo for her special visit to Melbourne!

Love your Life,
Georgia

Reality Check

It has been a more difficult Chemo Cycle this time. I have felt the effects of Cycle 3- perhaps I was taking the nice run of chemo cycle 1 and 2  for granted.

I have been lying low, just going through the motions and responding to all my appointments. It is hard to guage progress as I have had no formal testing done. I am still working on the whole digestive process and it is always a delicate balancing act to stay relatively well. I have to try to eat enough and in particular, try to eat/drink an adequate amount of protein.

I now have contact with Melbourne City Mission- Palliative Care. They are visiting me every fortnight and it is great to have a team independent of the Peter Mac Hospital who offer advice and practical support. At this point, I am accessing advice on pain medication and bowel issues, but will also get support from their allied services as required. They will aslo step up when I require specialised furniture at home to assist me to remain as comfortable as possible at home. They will also cover the cost of large items which is great to know!

At the moment, I am OK, but we have had to adjust the bathroom slightly so I can get in and out of the bath to have a shower. We have also raised the toilet seat so that it is easier for me to get up and down. The edema in my lower torso is persistant, but I do get relief from the lymphatic massages.

This week the problem has gotten slightly worse, and I am not walking as freely- small changes in mobility for the worse are huge for me. I am definitely worried about the progressive loss of physical independence and it will be a challenge for me to face not being able to walk in the future.

I have a big week coming up - a series of appointments which will all be helpful. On Sunday, another lymphatic massage, Monday the podiatrist, Tuesday cousin arrives from the US- yey!,Wednesday the  sarcoma soft tissue clinic with the Sarcoma Specialist to discuss progress and the next treatment cycle amongst othe things...., Thursday a Palliative Care visit, then another nurse visit with Peter Mac at home service for bloods to be taken and the PICC line dressed. Finally, should all be well Cycle 4 Chemotherapy will take place on Fiday/Sat with an overnight stay at Peter Mac hospital.

Finally, a dedication from me must now be given to another fellow-blogger and LMS'er. To Karen who shared her amazing life experience and her 4 year long journey with LMS- thank you for the humour and the wisdom, you are amazing. May you rest in peace!

To Karen who loved her life,

Georgia

Cycle 3 Yondelis

Update:  Cycle 3 chemo starts today, I am just waiting on the hospital to call and let me know they have a bed ready for me.... It could be a long wait again. I am hopeful that all will go well with my bloods (taken yesterday) and that all my tested levels are in the acceptable range.

I have been travelling reasonably well, not doing a great deat physically, but enjoying good company and following the Olympics religiously.....

The Lymphatic massage idea is working out - small steps are helping but it is fairly intensive and requires persistance. It is making a small difference and hopefully we can train a few people in how to do it to ease the load.

The botton line is that my abdomen has totally blocked my lymphatic  system , there is a little hope that we can encourage the flow back into my upper body to ease the pressure off my legs. We shall continue to try to work on this issue.

I will be in hospital Friday night and Saturday at this stage so I expect to be home again late Staurday evening if all goes according to plan. I am feeling positive about this chemotherapy and continue to hope that it will stablilise the growth of my tumours and possibly even help with some shrinkage to ease the pressure off my abdomen.

Thankyou for your prayers and acts of kindness,

Love Your Life,
Georgia

Tumour Trajectory Transition.....

Ok, I mean............ GOOD NEWS TODAY!!!!!!!!!!!!!!

The tumours are stabilizing. Some now have remained the same size as the previous scan and some are slightly larger. The Yondalis (Trabectidin) Chemotherapy is doing "something". It has changed the trajectory growth rate of the lesions. It has slowed down significantly. This is outstanding news.

The Sarcoma Specialist is optimistic that the treatment can continue to modify the growth of the cancer and it may impact on the composition of the tumours. It will take more time to have its potential full impact, so treatment will continue as scheduled. Cycle 3 will occur on Friday 10 August where I will have an overnight stay at Peter Mac.

In the meantime, I am looking forward to trying out a Lymphatic massage this Friday. Hopefully, it will help to improve my mobility in my legs.

Thanks to all for your many messages of encouragement, love, prayers and support.
God bless you all!

Hanging with the nephews

Love Your Life,
Georgia

Plodding along.....

Great time for a catch-up- really enjoying watching the Olympics - it has come at the right time. Besty friend from Sweden has departed so there is a big hole in my heart to fill....

Had the CT scan last Friday - with a complication - I seemed to have a reaction to the Contrast or the fluid in my stomach - I was in a bit of pain leading up to it. A simple test turned out to be a bit of a saga as I had breathing problems and a stomach issue. We were stuck at the hospital for a while for "observation" requirements....

Monday - I went in to Peter Mac today for a physio appointment- I need to pay some more atention to my edema issues: elevate, exercise,compress and lymphatic massage are all to be priortised. This is my main physical impairment so it deserves a focused approach - come on Georgia- get your act together!!!

Following this, thanks to Sarah, I also had a Podiatrist appointment. My feet are like alien beings so they needed some attention as well. Apparently, they just need a bit of TLC and they should come good soon as well.

The big one on our minds is this coming Wednesday's appointment at the Soft Tissue Sarcoma Clinic at Peter Mac; the verdict from the CT Scan. I am hoping to see Dr Desai- the top Sarcoma Specialist so that I can look at future possibilities of treatments with him.

In addition, I am about to spend some Team Georgia funds on a getaway to Daylesford- just a little bit of luxury for a couple of days!

Love Your Life,
GEORGIA

Treatment continues

An update for everyone:

A successful visit to Peter Mac Hospital: On Friday I finally got a PICC line back in- this time on my right arm. Apparently it was difficult to find a vein big enough , so another doctor was called in to do the task. I then had bloods taken, which needs to occur before chemotherapy takes place.

I was then put into Ward 9 and given a bed straight away! What progress!

Then, the blood analysis machine broke down, which meant a long wait before I got the go-ahead to have chemo. 7pm came round and everyone was nervous, my chenmo is worth thousands of dollars and with a restricted shelf-life, and blood results not back, we still went ahead at 7:30pm, and started the 24 hour process.

Eventually, results came through and my electrolytes needed some attention, but all other factors were in the safe zone.

On Saturday morning, I woke up with sunshine streaming onto my face as I watched balloons floating across the city. It was an incredible sight. I had a good day in hospital and was glad to eventually leave at 7:30pm Saturday evening. So Cycle 2 of Yondelis (trabectidin) is now done.

The next big event is the CT Scan- we all know how much I look forward to these. The worst part is the drink which makes my stomach ache given the tiny amounts I put into it these days.
Realistically, we know that the last two scans have been negative and that this is a big deal. It is one scan at a time, so this could have huge implications:
If I need to state the obvious:
-it could be good news- chemo is helping, your tumours are stable lets continue to be on Yondelis: yey!
-it could be not good news:- chemo is not helping, your tumours are growing lets stop this chemo
-what are the other possibilities? I don't know if I have many other options, but I will ask and I will let you all know.

How am I? I am now able to walk a little without assistance. When I go out, I tend to rely on the walker and most of the time, people drive me around. I am "able to drive" according to the doctors, but have so much fluid in my legs it would probably take a bit of confidence to get it to happen. I am still in good spirits and am hopeful that I can continue to improve physically from the position I am now in. Again, I am on medical leave from work- this came at exactly the right time, and am able to focus on being as well as I can be.

Today, Sarah and I took a trip to Geelong and visited Rachel's puppies; 6 gorgeous border collies - too cute!


Love Your Life,
Georgia

First Week off Work

It is true, I haven't given work a second thought as I have been so preoccupied with my many health issues this week.

I still am battling with my complications experienced since I was in hospital, and my system is still not stable. Eating is a really big deal and so are all the other mundane basic functions- it is certainly is frustrating and again, I don't know if this is now the norm or if I am working my way back to improving for my whole digestive sysyem. I am still restricting myself to the diet I was placed on in hospital; a low residue diet, in the hope that this will assist me to get back on track. I don't have an appetite as such, but I am on chemo as well, and the taste buds have just slowly died again.

Speaking of chemo, the hospital called yesterday and cancelled most of my appointments for the week. I was due to try for the third time to get my PICC line in, but apparently the ultrasound machine has broken down, and it won't be ready until Friday. So, I will go in on Friday and get this done, then I will go onto the 9th Ward and have Cycle 2 Yondelis chemotherapy overnight for  24 hour infusion over the weekend.

I have had the most delightful Torens Family visit me from Sweden, what a wonderful time to have my besty in Australia right now!!!!!!!! So many blessings everywhere!

Love Your Life,
Georgia

Fundraiser for Team Georgia

A heartfelt thankyou to all who came or were able to send messages of support on Sunday. For me, it was a celebration of all that is good about our community. The love and good intentions of all made the afternoon a great success.

I will be able to make a substantial donation to NLMS Foundation, as we have now sold the majority of the ribbons. From the count many people put in a more than generous contribution. Thanks so much for this.If you would still really like a ribbon, I have a few left; let me know and I'll make sure you get one.(thanks Carole and Bianca for your efforts here!)

I will aslo be able to cover some medical expenses through the support received as well. This is much appreciated.

I am still on a high in regards to all the folk who dropped in- you are all very special to me and the only negative was that I was unable to catch up with so many of you. From a distance, I hope you got the flavour of how I am travelling. The song was just something I couldn't resist- "....winter spring summer or fall, all you gotta do is call and I'll be there yes I will, you've got a friend!..."

The past two weeks have been crazy and I have been in hospital, but I am improving. It is a big lesson. I can have a medical crisis where I am completely unable to move, and then I can work towards improving again. Just because there is a problem, it doesn't mean it is locked in and it doesn't mean that a solution cannot be found.

My new Chemotherapy regime is to continue as planned. So Cycle 2 is this week, and it is full-steam ahead. As this week is going to be busy- in and out of Peter Mac Hospital Tues-Friday, catching up may have to wait for another week if that is OK.

Love Your Life,
Georgia

Great news today!

CARDIOLOGIST REPORT:    Well, the tables are turning..... a top result from the echocardiogram- my heart appears to have made a comeback- and is performing up to capacity again. This is a significant development as it means that the side- effects of the first chemo are now back to level. I still need to stay on heart protection as a precautionary measure.

It also raises a new possibility again for me. I will be bringing this up with the oncologists as soon as possible- can I again gain access to PAZOPANIB if I need it in the the future as another possible treatment?

The more options I have, the better!

Another successful appointment today was with the Physiotherapist. We spent a lot of time setting baselines but also working on understanding the lymphatic system and what to do to work on my legs and mobility. I feel armed with enough information ansd strategies to really get my walking capacity back a bit more. In the meantime, I will use the supports I need to ensure I can get around and be safe.

On another note, we had to cancel the PICC line going in today - I have to make sure I don't do my injection clexane before going in - apparently that is dangeourous to do and could cause more difficulties. So, I am to go back next Tuesday for the PICC line. It seems that I will be in and out of hospital for most of next week!!!

It is all happening,

Love your Life,
Georgia

Team Georgia Fundraiser -Auction Items Updated (x4)

Auction Item No.1

Painting-  Title: Spring 'Study No.6'

               Artist: David Sichler

               Acrylic on Canvas

Painted in 2001, this piece is part of a 12 piece series. It is No. 6 of the series. It's title & artist's signature are located on the back of the canvas. It's dimensions are: 760mm x 1010mm & the piece includes 3 layers of painting.

It's RRP is listed at $800- $1000.

Auction Item No. 2

Drill-  Hitachi 12V Impact Drill

Model- WH12DMR

This drill kit comes with 2x 12V 3.3amp batteries, 1x charger & hard carry case

It's RRP is listed at $400-$500

Auction Item No. 3

Collingwood -'Dane Swan' framed & signed 2011 Picture

Replica Brownlow Medalion

Comes with Certificate of Authenticity

Size: 860mm x 550mm

RRP is $600+

Auction Item No. 4

2x Schiavello contemporary Stools

Colour: Fuchsia/ Magenta

RRP is $520 (for both)

Back home from Hospital

Hooray! I am back home, from Peter Mac. They eventually let me go home on Wednesday afternoon with lots of meds and injections of all sorts!

I am spending a leisurely day at home Thursday with loved ones.

I have to return back to hospital on Friday for a series of appointments:
Firstly an appointment with the cardiologist as a follow-up from the Echocardiogram test I had on Wednesday.
Then a physio appointment to check out my progress with my body, legs etc.
Thirdly, I actually have to check in to hospital for a few hours to have a new PICC line put in again, this time on my right arm as I now have a DVT in my left arm.

It looks like I am definitely good to go for the Team Georgia event on Sunday at 3pm and so am excited at the prospect of catching up with many folk I have not seen in quite some time. Don't forget to bring some loose cash... there will be a few exciting things up for grabs. We will put a few items on the blog Friday that will be put up for auction just to allow folk to check for interest. I will also continue to sell LMS ribbons on the day. I am looking forward to some special musical items as well- wow!

Next week I am due at the hospital for Wednesday through to Friday- again, lots of appointments to be had. Chemo Cycle 2 of Yondelis is to go ahead on Thursday/Friday in hospital! It is good that there will be no delay in my treatment plan!!!!!

Feeling great to be here!

Love Your Life!

Georgia

Transferred to Peter Mac on 7th July 2012

Hi to all,

I am travelling well and am now at Peter Mac Hospital.  To my delight I have been put on a "Low Residue Diet" to basically see if my system can handle some food and still process and deal with it.

It looks like another few days in hospital to see if the bowel blockage can continue to improve without surgery.  Here's hoping!

I have day appointments this week at Peter Mac anyway:  Wed - Echocardiogram + Frid- Cardiologist.  It will be interesting to see if I get to keep these appointments.

Whilst at the Austin Hospital, I formed a DVT- Deep Vein Thrombosis near my PICC line.  It had to be removed.  Now, I am also having injections for this.  What a shame, another complication!

Looking forward to our little Sunday Team Georgia Fundraiser Event.  I hope to actually be there!

Love your life,

G.

Update- Ambulance Trip

I ended up in hospital on Sunday the 1st July via ambulance at 6am.  I was experiencing lots of abdominal pain & could not move.

CT scans showed blockages - (it was bound to happen) in my small intestine.  Pressure from all tumours is not helping.

Since then I have been in the Austin hospital. Conservative treatment has meant no food until bowels behave.

I am waiting for a bed at Peter Mac.  If things don't settle, then I may need surgery.  Will keep you posted.

Love Your Life,  Georgia.

Going into hospital

Now that I have your attention- relax!

Today I went into Peter Mac to have a minor procedure- I had a PICC Line Insertion. What is a PICC line? It involves XRAYS and Ultrasounds to find a direct vein line into your arm so that you can have chemotherapy without the fuss of lots of injections to get a line in. It is done under local anasthetic and was not too painful.It is more sore right now actually! I have to have it checked every week and dressed again to avoid the possibility of infection. I am pleased we went ahead with this.

The next bit of news.......I am going back in to hospital tomorrow and after seeing the Sarcoma Doctors at the Soft Tissue Sarcoma clinic, I will be admitted into Peter Mac for an overnight stay. Yes, I am OK...
They have just decided to bring my new Chemotherapy regime forward by a week- I have lots of crazy symptoms and appear to be getting worse.... thus the decision. The new chemotherapy is called Yondelis, which is used in Europe to treat soft tissue sarcoma/LMS.

My even bigger bit of news.... after much consultation with family and loved ones, it has been decided that I will take medical leave from work after the up and coming school holiday break is over. So from the 3rd week of July, I will take 10 weeks of medical leave so that I can rest, spend quality time with family, and give this 3rd treatment the best chance I can. Pease keep the prayers and visits coming.

Finally, I have OK'd the idea of a Fundraiser for Team Georgia, which will also include fundraising for the NLMS Foundation. If you are wanting to be involved you are most welcome, please contact me. It will be held in Melbourne on Sunday 15 July in Eltam at 3pm. Special thanks to the super-sisters for their work on this.

Love Your Life
Georgia

Down but not out

I am deeply disappointed in my latest results post CT scan.

The truth is I have had a miracle year where from July 2011 for at least 7 months I was blessed with a Progression Free result until March 2012.

The results from the March to May CT scan are abissmal. They could not be any worse.The tumours have been completely unresponsive to the GEMTAX chemotherapy. They have been growing exponentially and at a dangerously fast pace.My abdomen is now full of lumps and bumps and pressure on my lymph nodes is creating some restriction with my mobility-give me back my legs!!!!!!!!

There is no fix for my led legs. It may not improve at this rate. I am thinking about getting a walking aid- I have no pride-whatever helps I will do. My body is shrinking but my abdomen is swollen.

I have been taken off the chemo as it is deemed to not be working..... Another treatment is being considered, and with approval, may begin early July.

Every treatment I am on has a chance of working. The first one worked, the second one did not. The third one may again give me Progression Free time. If it does- we shall give thanks. If it does not, you do the maths.....

It has been a time of grieving. It is now a time to look ahead with hope.

My hope comes from a higher place. Do not be surprised. I am deeply a woman of faith and have always been. My meditation is always based on God's love. I will trust with all of my heart and I will not lean on my own understanding. 

Let love abound. Let the peace of God that passes all understanding be with us.
Georgia

One Year Since Diagnosis-Slay the Dragon!

OK. Honesty time.

I can't feel my hands and feet. My legs feel like led when I try to walk. Until two days ago I have hardly managed a meal for two weeks.  My stomach has been in turmoil since Day 8 of the cycle and has only calmed down now- finally......It is now Day 20- meant to be my best days before chemo starts again on Day 1 Cycle 3 - Wed 13-6-12!

 This Cycle has been completely unexpectedly difficult. It is not meant to be so hard this early in the therapy. I just want an explanation. I know I have been battling a chest infection which may be putiing extra pressure on my body. I also know that I have had extremely low blood pressure during the past 3 weeks. It may be this combination that has got me so beat!

Ofcourse I did have the CT scan 3 days ago. I will get the verdict on Wednesday. Have the tumours continued to grow- is chemo to continue- will I need to be put into hospital for serious attention- am I doing briliantly  and unexpectedly well? It always makes me feel vulnerable, I just have to wait and see and be hopeful and have faith and have love in and around me.

It is so hard but it is worth the struggle and worth the effort. I will never give up until I know it will be OK in the end.

So, It's been a hell-of-a-year! Swear words- insert here if you want to !@#$%^&*()

Raise your glass and give thanks to God- I am still standing, still singing, still alive!

Love Your Life,
Georgia

A little legless, but not so bad....

Hi folks,

I think I should check in with everyone. Yesterday, (Wednesday) I went in for my usual Day 8 Chemo. I had bloods done, the had my hair trimmed to number 1 at the hospital , as it is all falling out again anyway- wait for the new look!

Then went up to Chemotherapy Day Unit at 12pm. We waited a while and then a nurse came up and set she needed to take a blood sample to do an antibody match for a blood transfusion. I couldn't believe it as I was feeling fine. Apparently my heamoglobin (HB) had dropped since the previous week, and so my Dr had ordered the blood for me as a precaution due to the timing of the chemo. Usually, if HB is low, they delay chemo, but mine was not at dangerous levels: "89" is low, but not dangerous.

Chemo took until 5pm and then the transfusion of 1 litre (1 bag) took 2 hours. It was a long day- Sarah is a trooper and doing the hard yards helping me on Chemo days. She is the best!

So, I took Thursday off, but the weird thing is I felt worse as the day went on, my legs lost power- I call it feeling legless! So, I will take Friday off work as well, drink lots of water to get my blood pressure up a bit!

I took the Day 9 injection again today, so will wait for the possible aching in my bones in a day or so.....remember- this is a good thing!

I believe all is going very well. I am not on Pain medication anymore- this may be because of many reasons, 1 possibility is that the tumours are being attacked! We shall see.

I have a series of appointments coming up soon, but no chemo now till the new cycle- 3 starts on 13 June. Yey!

I have a CT scan to check the tumours on 8 June. On 13 June, I will see the Sarcoma Fellow and discuss the results.I am expecting to continue with Chemo and Cycle 3. We did not do a baseline just before this chemo treatment began. I know the tumours were growing fairly rapidly over March to May, so if things are neutral that will be a good result.

On 11 July, I am having my next Echocardiogram to check if my heart is on the improve or not. I will see the cardiologist on 13 July to get the verdict.

By the way, this time round I am being careful with Dexamethasone- no crazy highs to speak of....

Just one last thing: To Lucy who I believe was beautifully cared for and had a rich and loving life- a beautiful soul - may you rest in peace!

Love Your Life,
Georgia