My Blog Post for ADAO

I had been asked to do a guest blog post for ADAO's (Asbestos Disease Awareness Organization) online publication. 

I know at present Mesothelioma is classified as an incurable cancer. But I think, with the right mindset, there is no reason to believe that you can’t beat it. Yes, it doesn’t help if you have been diagnosed at a late stage of the cancer, having the right attitude doesn’t necessarily guarantee a good outcome, and there is no evidence that a positive attitude will slow the growth of cancer. But that is not what I am suggesting. What I am saying is that it is possible a cure is going to come along before the cancer gets you and by, keeping that in mind and having a positive attitude, it does equip you with the right frame of mind to want to fight it and win

Please read it all here. 


Update: Meso Warrior, fellow blogger and friend Mavis Nye reminds me that it is also a good strategy to seek out clinical trials.   Find out which ones are running and what stage they are at.  If your body can't handle chemo due to failed kidneys for example, there may be a trial out there that would still be suitable and could very well be the cure.

A Second Opinion

It’s been way too long since I did my last blog post.  I feel I have to get one out now because the other day I was interviewed by Elise Mooney for A Current Affair and they took footage of me sitting scrolling up and down my blog.  If anyone would go to my blog after it gets aired on ACA it would seem that scrolling up and down is probably pretty much all I’ve been doing the last couple of months.

I think one of the reason I’ve taken so long - not that I have a great track record of regular blogging - is because I don’t want to talk about my private life and issues with my relationship breakdown.  It is really hard to blog when you keep such an important part of your life out of it especially at a time when we are working through difficult issues where the stress and emotions are often greater than those I have dealing with my cancer.

Another reason it has been difficult to write is because of the sometimes daily back flipping I’ve been having regarding what I want to do in the short term.  The backflipping has mainly been about deciding whether I want to keep on doing what I’m doing with working part time,  or to stop work and do things that I might regret not doing if things suddenly went pear shaped for me.

The last 6 months have been very difficult with many friends having passed away from mesothelioma.   I don’t want to find I’m in a situation where I suddenly am one day too unwell to do stuff like travelling and other interests.  On the other hand, going to work makes me feel normal and I love what I do.

Four weeks ago my oncologist decided to stop my chemotherapy.  I’d done 12 rounds of Alimta and Cisplatin, double the usual amount, and my body really needed a break.   In any case I was happy for a break so was not complaining.

Then a few weekends ago I admitted myself into Cabrini emergency due to severe pain which I was unable to get under control.  I had a CT Scan taken and found out about a growth on my liver and fluid and a tumour around my heart.   It explained a lot about pain I had been complaining to my oncologist about.  The oncologist on duty told me that the treatment for a tumour pressing on the liver like that was radiation therapy.   By complete chance I’d receive an email the previous week from Dr. Feigen at The Austin Hospital asking me if I would be interested in exactly that.  The 2 latest developments were to be treated differently to what I had been doing up until that point.

My friend Jude, a doctor in palliative care and also my sister in laws sister has looked at my scans (PET and CT) going back from October 2010 and tells me that the reports show that the 2 latest developments have been there in all my scans.   So on one hand this was a relief since it means my cancer is not going out of control,  but on the other hand, since the treatment for the tumours around the heart and liver are different,  I wish I had known about it so I could have looked at treating it.

I have now seen 2 radiation oncologists who have very different approaches.  One of them wants to treat the area around the liver over about a week for pure palliative pain relieving reasons.  He doesn’t seem to think  it is going to make much difference doing anything with meso because it is incurable. He was the most pessimistic doctor I have seen so far in my whole four and a half years with this cancer.  The other doctor,  wants to do Monday to Friday for 6 weeks of radiation therapy where he will try to treat every inch of tumour that I have.  He is a more optimistic doctor and has I believe has also had a much more extensive experience with mesothelioma.  He left me feeling like maybe this will buy me time.  I might be left with my right lung no longer working and many other risks that I need to consider, but what choice do I have?

So here I am, having seen two radiation oncologists to get a more informed opinion of what can be done.  One offering no hope, just a palliative approach to ease the pain, the other offering something to cling to.  I just keep thinking how lucky it was that I did check out the two opinons.   It made me realise not only how much hope matters but also how much a second opinion can make all the difference.  It sounds a bit cliched to say hope matters but to actually feel the effects so dramatically after leaving the two appointments, the difference couldn't have been more stark.  And when your plan is to hang in there until a cure comes a long, it matters a lot.

I'm refocussed and ready for the fight

In my last post I mentioned that I was thinking of taking a break from chemo.  I asked my oncologist if I could have a PET Scan to see more accurately if my tumours really were being reduced to almost nothing.   He managed to book me in fairly quickly which was good because I needed to know if it was ok to cancel my next chemo session which was the day after the scan.

The hospital was able to have my results ready the same day in the afternoon.  I went to see a stand in for my oncologist who was on leave.  She read the results and told me that I still had a few small tumours in 2 separate places in my right chest, with the largest tumour being two centimetres.   I told her I really felt I needed a break from the chemo because my body was really being knocked about by it.  I was worried that if I overdid it with the chemo, I might not be able to take it anymore and then where would that leave me?  She said that in general she advocated taking breaks and agreed that it might be beneficial.  At the same time she didn't think that I should leave it more than 3 weeks.

I then went off for a blood test to see if I was still anaemic and if I still needed the blood transfusion, or 'house red', as my oncologist called it, that I was due to have the next day during the chemo session that I had just cancelled.  While I was having the blood test I was thinking about what the oncologist had told me about having tumours being in two places.  I was concerned because I had only been aware of one of the locations.  So after the blood test I went back to see the oncologist and I asked her if she minded comparing my PET Scan with the previous one that I did in October last year.    She went and had a look and came back and told me that the reduction was significant because in October I had extensive tumour coverage all over my right chest.  She gave me the two reports to take home so I could look over them.  It was like reading a foreign language but certainly I could see that indeed I had extensive coverage.  I was in shock.

I am not sure why my oncologist never mentioned this to me.  He only told me about the area where I assume the largest tumour was.  I will see him the day before my chemo session next week and ask him why he didn't mention it.

My first reaction was that I was glad I didn't know because the extent of the coverage would have been quite worrying.  I also thought that not knowing allowed me to breast-feed Emma for the 2 years that I did since I thought I was in remission.  But then it didn't take long for the significance of it to hit me and it changed the way I was thinking about my cancer.  

Firstly I wasn't in remission for the 3 years that I thought I was.  Also the pain I kept feeling and was told must be torn scar tissue, actually was cancer pain.  It is clear now that my cancer is a lot more aggressive than I had previously thought.  It changes the way I now think about everything related to it.  I also wondered how much of a part stress was playing in all this, as I had been under a lot with my relationship problems and whenever I felt really stressed I could feel it in the area of what I now know were my tumours.

All of a sudden I wasn't that relaxed about putting my chemo off while my body was recuperating.  At the same time it worries me to push it too much because at the moment the chemo is the only treatment that I know is working for me.  And working it is.  I have to remember and focus on that.  I have gone from extensive coverage of the right chest to two areas with a few small tumours.  

Anyway I'm going back in for chemo this Wednesday.  I might ask for a lower dose of the chemo drugs   this time.  And probably after the chemo, I'll go and find out about the best ways to detox my body and to keep my self stress free.  I'm refocussed and ready for the fight.

Update:
On my previous post, a reader named Lyn commented about her tumours continuing to shrink after she finished her chemo.  Lyn if you are reading this, I would love to talk to you more about your experience.  You can email me at blog@anitalive.com

A Well Overdue Post

It has been over 3 months since I last blogged and a lot has happened which I haven't written about.  I separated from Patrick and I guess I found it difficult to write about what is going on with my cancer when there was a large part of my life I wanted to keep private.  I felt like I wasn't being honest when there was so much of my life, a part that was really affecting me,  that I was not going to even mention.   I won't go into any detail about our separation but just wanted to mention that it happened, to explain my writers block.

I have continued to do chemo every 3 weeks but I've missed writing about my last two CT Scans.  The first one was just after my 6th chemo session and and the second one was jut now on Tuesday.  Both scans showed reductions in my tumours but my last one didn't even show tumours but merely some thickening on the chest wall.  My oncologist said that for the time being while it is working we may as well continue with the chemo.  I agree with him but don't know how much more chemo my body can tolerate.  It seems to be affecting my nerves.  Each time I had a CT Scan I was surprise there were reductions in the tumours because my pain levels seem to be increasing.  I now think it is the chemo that is damaging my nerves.

Anyway today I emailed my oncologist to asked him if I could do a PET Scan before my next chemo session next Wednesday.  The PET Scan shows up active cancer and I thought that there might be a chance that my cancer is no longer active.  My Mesomark test - a blood test that measures the level of mesothelioma - was down to normal.  If the PET Scan result does show no active cancer then it will mean I am in remission.  It would be hard to believe that this will be the case but on the off chance that it is,  it also means that I won't have to do chemo.

It is quite a stressful thing getting test results from a scan.  The difference between a good result and a bad result are life changing.  All my future decisions and thoughts would completely change depending on the outcome.  On Facebook, many of my fellow meso warriors go through this same awful stress of waiting for test results.   As mesothelioma is still an incurable cancer,  a good result usually gives us a bit more peace of mind while we all wait for the cure that medical science will no doubt find.  And very soon I'm sure.  I am surrounded by fighters who continue to keep positive in the midst of this bastard meso.   The hardest part for me is when I see it taking away my friends with meso knowing that a cure can't be far away.

Last week Emma and I were on the Channel 7 news.  They did a story on 'Women and Mesothelioma' and interviewed me for it.  Click here to watch it.

Another thing I'd like to link to was an excellent report on The Daily Show recently exposing and ridiculing Canada because it is continuing to mine and export asbestos.  Shame on them.  It is really hard to believe a country like Canada can allow this.

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
Ored to Death
www.thedailyshow.com
Daily Show Full Episodes Political Humor & Satire Blog The Daily Show on Facebook

I really would like to make an effort to post more frequently.  No promises but at least I finally got out a well overdue post.

Blogging in a cafe

I'm doing something right now that I've always wanted to do.  I'm blogging in a café while having a latte.  I've just come from seeing a movie, so I'm having a very nice day all round.  I just went to see the movie Hereafter which is about three unrelated individuals experiences with death and the afterlife.  The afterlife is a topic I haven't thought much about funnily enough considering I have an incurable cancer.  Maybe it's because I don't like to think about what would happen should I die.

Lately I have thinking a lot about my friend Ria.  I met her online in cyberspace just over a year ago.  Her father had mesothelioma and so she was desperately looking for a cure that would save him.  In her quest she also came across myself and others battling the same battle.  As a result of our common interests, we have been witness to the evolution of an online community which we call the Mesowarriors.  I have written about this on a previous post.  We are made up primarily of people with mesothelioma and their loved ones.  Ria has been an absolutely brilliant member and I'm in awe of her strength and kindness.

Last week ended with me attending Ria's dad's funeral.  It was really heat breaking and I cried a lot.  I felt the frustration Ria had trying to help her dad in the last months of his life. The desperation of looking for a cure for a disease that was just not responding to known treatments and knowing that with a cancer with no known cure, a clinical trial might just be the one thing that saves him.  But not being able to get him on any of the clinical trials that were currently being run felt like a murder was being committed.  The pure helplessness she was feeling made me want to scream.  

It's not always easy to keep a positive spin on things when shit happens.  Apart from the online Mesowarriors community, I also belong to ADSVIC (Asbestos Diseases Society of Victoria) and regularly attend the support group.  The support we have for each other is immeasurable.  We also exchange a wealth of information on the latest in research on mesothelioma - Information that would otherwise be hard to come by.  Information that keeps us hopeful that some breakthrough is just about to happen.  The only down side of our community is that sometimes, people we become close to die or become unresponsive to treatment.   So at times, it can be a struggle to keep your chin up.  There are two things l like to focus on during difficult periods.  Firstly, the need to believe that we will be lucky with timing.   The other thing I focus on is statistics.  Most of the people I've ever known with mesothelioma are still around.  This is a weird fact considering that if you surf the internet about mesothelioma you would think that the majority of us would be dead within 6 months.  I am a keen web surfer but luckily following my diagnosis I had no urge to google about it - possibly out of fear.  The first thing my oncologist told me when I found out I had meso was that 'it is incurable but treatable.'  Without googling a thing, this set in my mind the idea that meso was like HIV, a disease you learn to live with.  I remained blissfully naive of the real destructiveness of this cancer.  Yes it is destructive, but I can't see it knocking us down at the speed the info out there would suggest.  This is good when timing is such a factor.    There is no denying meso is a vile cancer but if it thinks we are going to give up without a fight, it better think again.  Ria showed us one hell of a fight in trying to save her father.  I know that sooner rather than later, we are finally going to win.  I'm pretty confident of this because if you look at the speed at which they are discovering and understanding new things about cancer, it seem like it's just around the corner when they will be able to turn off the mechanism that allow the cancer to grow.

Now I am at home sitting in the garden finishing off my blog post.  The weather is superb and life is good….

On a lighter note, the last week here in Melbourne has been full of media craziness with 24/7 media crews parked outside of Shane Warne's house due to his new girlfriend actress Liz Hurley visiting from the UK.  Until now I had no idea he was a neighbour.  On Thursday, I had just come back from the funeral and was about to sit down for some lunch when I got fed up with the media helicopters buzzing overhead for the second day straight. So I went out my front gate to tell them to piss off. My neighbour, Richard was standing there to my embarrassment and caught me yelling at them.  It was pretty funny I guess. He then headed off on his scooter to pick his son up from school when suddenly there was a strong gust of wind which slammed my gate shut. The front wall is pretty high so I was too scared to jump over it. So there I was just stuck there not knowing how to get back in.  I laughed about it at the time even though I was trapped outside - and barefoot to boot.  Eventually Richard came back and jumped over the wall like it was a tiny little hurdle and opened my gate for me.

Such a great way to start the new year

Today is the first day of 2011 and hopefully this new year's resolution to blog more often will be more successful than last year's one.   I am pleased that I have a blog where I can go back and remember events that I had forgotten about or to help me remember the chronology of some events.   I have been doing a lot of thinking lately about how Emma would remember me if things don't go so well for me.  She is only two years old and is probably too young to remember me just by relying on her own memories should I die.  My blog would be something she could always use to help understand me and my relationship with her.  

The reason I had been thinking about this was because the last couple of weeks I have had increased pain.  My oncologist had told me that after the 3rd chemo session, if the  scan results were not good and showed growth in the tumours, we would stop my treatment and look for a plan B.   I had started to think about that Plan B.  Knowing that I was currently on a treatment considered in Australia to be the best at the moment, my options were limited.  For a while now, if need be, I had been planning to try to get onto the clinical trial that Farid is on.  I mentioned it in my last post.  If the chemo wasn't working I didn't want to waste any time.  I was trying to think positively about Farid's results and how lucky I have always been with timing - at least with being in the right place at the right time when trying to park my car.  This surely would be great if I could get on to this trial.   

I was expecting this Thursday just past to be one of the worst days ever for me.  While I try to stay positive, it is a struggle sometimes, I wasn't sure how well I was going to handle the news even though I was expecting it.  The last week, every time I looked at Emma, it was a reminder that I might not be here for her. 

I went to get the results of my CT scan.  I was all focussed on discussing Plan B with my oncologist. But to my surprise he told me the results were good.  There was moderate reduction in my tumours, he said.  

Wow.  That was a relief.  It is amazing how much your thinking changes depending on how you perceive your future.  It has happened to me quite a few times over the last few years.  I'm on a roller coaster that causes sea changes to the way I think about the future.  For the last couple of weeks I was finding it hard to do anything that required long term planning.  As much as I was trying to stay positive and think that this next clinical trial sounds very promising, I just wasn't able to plan long term.   And then in that one afternoon after seeing my oncologist, everything has turned around again.  

I think in general I always kept a positive attitude no matter when I was told good news or bad, but always when it came to planning and doing the necessary stuff like organising my finances, I would always think practically of outcomes including of worse case scenarios.    

I’ve rushed this post a bit because I want to get it in before midnight so I can have my first post for the year on January 1st.  I just want to mention that I did an interview with the Sunday Herald Sun which should be out first or second Sunday in January but I'll keep you posted.   I just wanted to get this post up because I thought for me, the results were such a great way to start the new year. 

Life is good

Well it's now half way between my last chemo session and the next one coming up and I am well overdue for a post. I'm feeling pretty good today. It took me just over a week to feel back to normal and even during that week while I wasn't feeling well enough to be out and about, I didn't feel like I'd been hit by a truck like the previous time. It was fairly mild in comparison.  It helped too having great food and service.  I hope I don't get a friend into trouble but it helps to know someone who manages the catering where you are staying.  Here is a photo of dinner in hospital.  One dozen oysters,  roast chicken done very nicely,  cheese cake with a brandy orange infusion, and a small bottle of red wine.  I love oysters and was kindly given 12 instead of the allotted 6.

I am feeling very positive at the moment, made more so because a fellow member of the ADSVIC support group, Farid, who is undergoing a clinical trial called FAK, has had some very promising results with tumour reduction. The FAK trial hadn't been tried yet on mesothelioma but Farid's wife Lisa found out about the trial and saw that it had been successful with aggressive melanoma and asked if they would be prepared to try it out for mesothelioma. So kudos to Lisa and Farid for being so resourceful. It is amazing how much research and detective work is being done by people who are effected by cancer. In the case of mesothelioma, because there is no known cure, most of us are clutching at straws hoping to come across something in the time we have. You feel like a time bomb is ticking and you are a guinea pig in whatever you try but you go on with it in the hope that you are going to be lucky with timing. As I always say, while there is life there is hope.

Here is Emma and I a few days ago in the garden enjoying the perfect weather.

Another reason I am feeling so good is that in the last 2 nights Patrick and I have gone out and had a great time.  Friday night was my brother Jack's 50th birthday and I organised that a friend's daughter baby sit Emma.  It was the first time ever I had left her with a babysitter so I was a bit worried that she would wake up and find us not there, but thankfully she slept right through.

Last night was a work end of year party for Patrick's company and so we left Emma with my parents.   She was very upset for the first hour or so, looking for us everywhere but then she settled and was quite happy.  The plan was to leave her there overnight but in the end we had to come and rescue my parents or no-one was going to get any sleep.  Emma wouldn't let my parents put her down in the porta-cot so they took her to bed with them.  At home we have been letting Emma turn off her bedroom light just before she goes to bed by lifting her up.  She just loves doing it.  In my parents bed they had light switches on their bedside tables - all accessible to Emma.   That was great news for her.  She was having a ball turning the light off and on...off and on.   With every flick of the switch,  Emma was becoming more and more energised.   When we got there at 2:00am my parents were looking exhausted and Emma was wide awake, giggling and flicking the switch.

In general I am feeling good, positive and thinking that life is good.

Update:  I forgot to mention that in hospital I also managed to get a private room this time around as opposed to sharing with 3 others last time.

Update2: In an effort to not get my friend John into trouble for the preferential treatment, I forgot to mention the hospital was Cabrini.  Sorry John Wayne (as if that is your real name).