Link to The Age article corrected

I just noticed that the link to the article in The Age was linked to page 2 of the article.  Here is a link to the full article.

The article about me in The Age

I was apparently on page 3 of The Age today.  I have only seen it online - Patrick is going out now to buy the paper.  Here is a link to it.   I realised it must be in a prominent position when I started getting phone calls from friends this morning saying they saw it.  I also got a call from someone from Today Tonight current affairs show on channel 7 - but they woke me up.   I told them to call me back at 11:30am but they never did.

I also forgot to mention on my previous post that I had a chest x-ray last week and it is all clear.  They only did one xray and I had to wear a lead skirt to protect the baby.  Anyway its all good.

Entering week 19

It's been eight weeks since my last post.  So much has happened and I haven't posted for so long.  During the first 6 weeks I was going through withdrawal.  I had to ween myself of the fentanyl patches that I was on for pain and it was a terrible time.  That on top of suffering from morning sickness and low energy - I didn't feel like blogging.  Then after that I thought probably nobody bothers reading my blog anymore since I've left it for so long.  In any case I promised Paul, my twin brother that I would update my blog and I do want to get back to blogging too.  

As of tomorrow I will be 19 weeks pregnant.  I get a weekly email from a site called babycenter that I'm registered with.  They tell me exactly where my baby is at each week and what I can expect to feel.  So this week my baby was the size of a bell pepper but as of tomorrow it will be the size of a large heirloom tomato.  I'm not sure what that is but they tell me it is 6 inches head to bottom.  I found out the sex of the baby but Patrick didn't want to know so I have to keep it a secret.  

Patrick started a new job this week and I am back at work part-time - 2 or three days a week.  

Yesterday I had 2 phone calls from people wanting to interview me.   One was from The Age newspaper and the other from Cabrini Hospital's newsletter.   Today The Age reporter interviewed me in the morning and just now I finished a photo shoot.  There should be a big story in the Saturday Age and I'll send a link if it is published online.  Cabrini want to do a story on me because they see me as a success story.  They interviewed me on the phone and will do the photos in August.  I guess I do have a good story but my main reason for doing the interview for The Age was to spread the word about the dangers of asbestos.  That is the angle they are supposed to take but we'll see how it turns out.  The photographer was keen to show off my belly in the photo.

I also had a phone call today from the woman I mentioned in my previous post from Adelaide who had mesothelioma and was pregnant.  She had her baby now already.  We spoke for a while and she seems lovely.  We will catch up with her when we make a trip to Adelaide in August.

I got an invitation to be facebook friends with another Anita Steiner from Uruguay.  I've always wanted to meet another Anita Steiner. I googled and there are a few of us out there.   There is Anita Steiner the professional cyclist, the Rabbi, the author of children books, the artist and the list goes on.

Well I won't go on but I will post again soon (I know I shouldn't be making these promises).  Perhaps I'll post on Saturday with a link from the article in The Age.

Baby Photos

I've been back to work now for 2 weeks.  Not full time, just a couple of days a week and not even full days but its a start.  

The first week was very difficult getting up with all the nausea, but one I got moving it became a lot easier.  This week was easier still so I think I'm getting over the nausea and hopefully next week when I end my first trimester I will be back to normal.  I still get very tired though and feel the need to take naps during the day.  I think that is not wholly from the pregnancy but also from the patches I use which are like synthetic morphine.  I use them to help with the pain following my surgery that cut through so many nerves.  I'm now slowly weening myself off that. 

For the last several months, every few days I had shocking nerve pain and restlessness and was bed ridden about 2 times a week.  I only discovered 2 weeks ago that this was due to withdrawal pain from the Fentanyl Patches.  I was changing the patches every 3 days as prescribed but they were only lasting 2 days so every third day I was suffering withdrawal symptoms and yet none of the doctors could tell me what was causing the pain until it finally clicked and I realised what it must be.  I phoned Judith, my sister in law's sister in Sydney, who is a doctor in palliative care and asked her what were the symptoms of withdrawal from fentanyl.  What I was experiencing was exactly as she described. 

I can't remember if I mentioned back in December about an article in the paper about a women in Adelaide who had been diagnosed with mesothelioma 10 years prior, and was pregnant with her second child.  When I read it at the time I thought I had a lot of similarities with her. -  I was from Adelaide and I believed I was in remission with Meso although it wasn't yet official.   She was in 10 years remission which was why she was in he paper but still I had a feeling I that I was just like her.  Little did I know that I would also be pregnant less than 6 months later.  Here is the article.

Photos:  My ultrasound images in 3D.  Fetus at 10 weeks.

A True Miracle

We finally got internet connection a few days ago. It has taken this long to get connected since we moved and it was very frustrating living without it even though we have a public library across the road from us that is free to join and has free wireless internet. The reason I hardly used the library was that since we moved I have been feeling nausea and lacking in any energy so I have barely left the house. 

But that is not the only reason I haven't blogged since we moved. After being in the new house for a few days I was unable to unpack our boxes because I kept throwing up and was feeling awful. I feared the worst and rang up Opal Clinic who I was about to start a trial of Pro-pancreatic Enzyme treatment with. I wanted to start the treatment because I was worried that the mesothelioma was coming back and that must be what was causing this nausea but that it wasn't showing up in the x-rays yet. I went to the naturopath who thought I should get some blood tests done to try and discover what was wrong with me. I then went to Opal Clinic to pick up the enzymes. I had discussed with the doctor there about waiting for the blood tests to see if there was anything showing up in the tests that would explain my situation. She also added some more blood tests to the script and then I went to the lab to get the tests done.

The next day I went out with Julie for lunch. I told her how sick I was feeling and she said "you're not pregnant are you?". I told her that I definitely wasn't. I knew that for sure. I'd even done a pregnancy test in January when I stopped having my period - in the faint hope that I might be. I remember how devastated I was when it was negative even thought I knew deep down what the results would be. Besides the fact that the IVF doctor told us [a year ago] that we had a less than 1% chance of me getting pregnant and that was even with IVF. Also the literature from the chemo drugs I was using said that fertility wouldn't be possible for at least a year after treatment. Taking my age into account, not being able to conceive was a reality that Patrick and I had to accept.

I'd just come home from having lunch with Julie and noticed 4 missed calls on my mobile. They were all from the Doctor. On the first message, she wanted me to call her urgently and that she was about to leave the clinic in 10 minutes. On the next message she told me what the fuss was about. I was pregnant. I had just walked in to the house while I listened to the message and I saw Patrick sitting in the lounge and I told him what I had just heard.

The doctor had organised an ultrasound for me the next day where we found out that I was seven weeks pregnant and everything was looking quite good with a healthy heart beat. Today I had another ultrasound and it is all going along very well. I have 2 photos from the ultrasound. It is growing perfectly normally and I'm feeling very good about it. I know it is still early days. I am 9 weeks and 5 days and so still not out of the danger zone but it all seem to be going so well so far. I thought about not mentioning this on my blog until I am passed the 12 week mark but without mentioning it I found I couldn't write about anything and as I said in my last post, I want to write often enough to reassure everyone that I am doing well.

My oncologist said that while the chances of the Mesothelioma recurring are still quite high, I have beaten all the olds so far. I know there are still a lot of hurdles to overcome still and I do keep that in mind.

One thing I was grateful for when I found out what was causing my nausea was that I was really glad about being impulsive enough to buy our new place. It is the right size for us to have a baby in. The flat we just moved from wasn't and we would have had to go through the trouble of house hunting.

It has been almost a year since I found out I had mesothelioma. I must say that it has been a roller coaster 12 months.

Our New Home

I originally started blogging so that friends and family could keep up to date with what I was up to and in doing so would hopefully not worry if all was going well.  Unfortunately I have posted so infrequently lately am having the opposite effect.  I am making people worry by my silence.

I will in the future try to write at least a few comments regularly just so you know all is well.

I have a busy week this week.  My twin brother Paul is visiting from Israel with his wife Ruth and their kids, Itai and Dana.  They are leaving on Wednesday and on Thursday Patrick and I are moving to our new unit in Brighton, and then on Friday my mother is having her 80th Birthday party which thankfully my brother Jack has done most of the organising for.

Explaining about the  new house takes me back to almost where I wanted to start filling you in from when we got back from our trip down the Great Ocean Road to Adelaide.

We had been back just over a week from our holidays and I woke up on Saturday morning think I had to go to the vet to get Choochie more of his special dog food. On the way I dropped in to a house inspection. I wasn't really looking seriously but this sounded interesting. The place was an old converted Fire Station and the photos looked very pleasant. I jumped in the car to get the dog food and punched into the navigation system the address of the open inspection.

I walked into the unit, a lovely 3 bedroom place with a lounge / dining room with large north facing glass door/windows opening onto a gorgeous landscaped garden. The sun was shining and it looked perfect.

As I was leaving to the car to get the dog food, I asked the real-estate agent when the auction was - thinking he would say 3 or 4 weeks. He said, 'In 5 minutes.'

I thought I would hang around watch. The first person bid and then the auctioneer was searching for another bidder and then it happened, I decided to bid. I thought Patrick would understand why I had to when he sees the place for sure. And so it went backwards and forward between me and another bidder several times and them bam, everyone was applauding and the auctioneer as shaking my hand and invited me in to sign the papers.

I went inside and when he asked me if I had my cheque book for the deposit and asked who my conveyance lawyer was I realised I had now idea what I was doing. At this point I thought I was going to throw up. Anyway I had until Monday to get everything organised but in all the excitement I totally forgot to buy Choochie his food.

Once Patrick saw the place he did see why I did it and eventually concluded that it was a special quality I had being impulsive like that. I think the real estate agent telling Patrick about clients that have been going to auctions for 6 months not being able to make decisions and then finally buying a place they didn't like out of desperation, helped him come to that realisation.

Also just after I got back, Julie asked me if she could throw a birthday party for in their house.  At first I didn't want to because Julie had been such a great friend throughout the year and she had already done so much for me, I really didn't want her to put her self out so much again.  However I decided to take up her up on it. 

I was very grateful for her offer.  I thought this birthday was a very special because it was the first birthday I really thought I almost might not have had.   I also very much wanted the opportunity to invite all my friends and family who were around for me the past year - all the people who helped pull me through such a difficult time in my life and keep me smiling and keeping positive through it all.   Julie also organised to have a dear friend Jennifer, who I had lost contact with and hadn't seen for  almost 18 years, to come down from Sydney for the party.

It was a really a fantastic night and thanks to everyone who helped make it that - especially of course to Julie.

A couple of weeks ago Patrick and I went to see one of my favourite bands, Air - French band, at the Palais and they were absolutely brilliant.  It was so enjoyable that I decided I should make more of an effort to see live music performances.  So when my sister-in-law told asked if I wanted to come along with them to some Jazz performances last night for the fringe Jazz festival I was very keen.   I should have guessed that being part of the fringe festival it could be a little over the edge.    The MC introduced the acts as the type of music these musicians 

never get the opportunity to play in public and we soon learned why.  The first musician sounded as grating as chalk on a blackboard.  He placed an electric guitar using a comb, a magnet and some screws.   The next band tried to capture the essence of David Lynch movies.  Describing his movies as interesting and mundane they then started to play and went on and on and on and on and really captured the mundaneness that they were looking for.   None of us could figure out what was jazz about anything we saw last night but guess I sort of expected that from a fringe jazz festival.  There were only about 20 people in the audience so I guess this music really does cater to only a very small band of enthusiast - unless they were all just as bored as we were.

Oops this post is getting long and I have to go to bed  so I will go over what I wrote and edit this bit out tomorrow and finish it off.  cya

The Hippie Festival

Just before we went to Adelaide, we bought a tent, a mattress and a blow-up pump.  We thought it might be fun to do some nights camping out - really.  However we forgot take a sleeping bag or something to cover ourselves with and so never ended up doing it.  So 2 weeks ago we bought some nice compact sleeping bags - you have to be economic with space in a mini.  All we needed now was to decide where to go and we would be set.  

So on Thursday night we were out for drinks for Annette's birthday and I saw Danny who said he was going to Confest - a hippie festival that runs twice a year, once for the Easter break and then again in Summer.  'Why don't you come up too?' he told us.  Well here was a chance to use all our new camping gear and I thought a hippie festival could be interesting.

So we went.  Now think of all the stereotypes you can imagine about a hippie festival and then multiply it by 3 and you might get close to what we experienced.  Interesting to say the least.

Then went about to look for Danny and Simon, the only people we really knew up there.   We went to the info tent to see if Danny might have left a note there to say were they were camped out since there was no network signals at all.  There was a board full of hand written notes and messages and I looked for the crappiest piece of torn paper with some message scribbled on it.  I thought that if Danny had left a message that it would be some really poor effort - if he bothered at all. 

Then we kept walking around, it was getting dark but there was a full moon and it really did light up the sky so much so that it made it easy to see.   Then suddenly we came across a big painted sign saying  'Anita, we are here'.   Did Danny go to some art session in the afternoon and discover another side to him?  I was baffled.  We called out his name but no-one answered.  We set up our tent there anyway and carried on walking around.  I heard some Jazz music and we went over and found Danny doing some improvised jamming with some other musician types.  So we found out where Danny and Simon were camping - it wasn't near us - we were however next to another Anita - Danny didn't make that sign nor did he write any note for that matter.

The next day we stumbled across an interesting workshop about the benefits of certain foods.   A strange thing about a lot of the hippies at the festival was that they could have some very interesting information but then they screw it up by throwing in all these conspiracy theories or just plain nonsense.  For example the guy running this workshop was telling us how Steve McQueen had tried some alternative treatment - the treatment itself sounded plausible - in fact it was based on something that I was already looking seriously at doing myself.  But then he said 'They'  ('They' were usually the Government, Pharmaceutical companies, or just some unspecified 'Them') poisoned him because he was going to tell the truth about cancer.   He also said that Moses was a gold smith, and the word 'worship' actually comes from 'workshop' because Moses had a workshop.  Out of the very many things wrong with that single statement was also the fact that they didn't speak English back then.  Anyway everyone around smiled and nodded as though he was saying something intelligent.  Coincidently when I got back, I googled about how Steve McQueen died and it was from Mesothelioma.

That evening I bumped into another person I knew.  He and his friend asked if I was enjoying myself and would I come again.  I said yes to enjoying but also that I probably might not come again.  They told me that it can be confronting at first but I will get used to it.   It is true that I do have a lot of inhibitions like I couldn't cover my naked body in mud and jump around screaming like a (vegan) cave man with the hope of reconnecting to something primal in me.  I have this cynical side of me telling me this is nonsense.  In fact there was very little I could do there  because I was held back by my cynicism.  We didn't go to the tree-hugging workshop either but my hippie experience was enhanced because I did end up have an outdoor shower using a hose as there was no other options.  What I did notice though was that not having that cynicism does make you susceptible to believe a lot of the idiotic conspiracy theories that come your way.     

We ended up leaving on Monday night.   There was a storm coming and we had already experienced one storm which thankfully only lasted just over an hour.  We sat in a large tent with a whole lot of people waiting for it to pass while a whole bunch of mud-people were jumping and screaming all around us.  I wish I had a tape recorder because some of the conversations around us were quite remarkable.  For example these two guys sitting next to me were talking.  One guy said that Germans created the universe and then the other guy said that he was starting to read about nano-technology to which the first guy said 'Oh right you mean like the ipod-nano'. 

Anyway I did really enjoy Monday.  I was starting to think that I could do it again some time.  But I am glad that I did it at least once.

Photos starting from the left:

Me in one of the big tents,

Patrick standing in the rain,

The sign that someone wrote,

The big tent we sat in during the rain storm,

The mud-people

Long overdue

Of course a new post is long overdue.  I haven't posted in ages mainly because I am getting bogged down with where to start since so much has happened since I last blogged.  I think I should just start from what I have done most recently and then work backwards.  

I checked my Google Analytics account which monitors visits to my site and I was surprised to see that there are still quite a few visitors coming despite my lack of posts (thanks for the support and sorry I'm letting you down a bit) so I thought I better post this just to let you know to hang in there...I am about to do something.

OK I better get to work on it right and I'll try not to get to distracted.  Cya very soon!!!

Road Trip

Shortly after my last post Patrick and I took off toward Adelaide along the Great Ocean Road.  We planned to do the whole trip in a week or slightly over that, playing it by ear.  Now almost two weeks later we are still not even starting our return trip.

The weather has been great and I've always dreamed of driving down the Great Ocean Road past the 12 Apostles in a convertible with the hood down.  We couldn't have picked a more perfect day to do that drive.  Patrick says his head is the brownest it has ever been.  First he looked like a lobster though - we forgot to put on sunscreen.

We did a few days in the Barossa Valley visiting quite a few wineries and tasting some of the best wines I have ever had.  We were mostly sensible tipping the wine into a spittoon after tasting it to avoid getting blotto.   Each day we had a different designated driver so one of us had to be even more responsible than the other.  Even so, I ended up buying a lot more wine than I intended.   There was so much nice wine that just wasn't available in the bottle shops back home so my mini is packed full - boot and back seat as well.  Our favourite winery is now Langmeil - every one of their wines was superb.

We stayed in a lovely little cottage there with a great view of the vineyards around Tanunda.  It had a spa that we filled and I put in a tiny amount of something aromatic for the bath which was provided but it caused so much foam that it almost filled the entire bathroom.  It was very comical indeed and I wish I had taken a photo.  

I'm also scared about what will await me back home regarding speeding fines.  Adelaide is absolutely littered with hidden speed cameras and it has ridiculous speed limits that aren't consistent.  We learned too late after I noticed the bright flash from the cameras twice, that the rule is ' 50 km/h unless otherwise stated'  It seems so slow and cars are just crawling around everywhere even thought there is hardly any traffic.  Luckily I have cruise control that is easy to adjust and reset so I learned to use that most of the time as it is so easy to forget while driving - and chatting away - to stick to the speed limit.

Today we are Victor Harbor and we have internet access so I have taken this opportunity to sit down and post on my blog.  I surprisingly haven't suffered from internet withdrawal after going cold turkey.  I thought I would.  I guess I had a lot of other things to keep my mind busy and so no cold sweats or shaking at all. 

Tomorrow we are going to Kangaroo Island.  We'll probably spend about 4 days there before going back to Adelaide - I found out my cousin Judy from New York is in Australia and I missed her in Melbourne so I'm going back to Adelaide to catch up with her and her husband Mark when they arrive there.  More chances to traffic violation points.  I'm scared that I might have already lost my license before I even knew about it the hidden cameras.  I think you have 12 points all up.  It will be very expensive if that is the case.  However if I did lose my license, it will only be for South Australia thank goodness - I think.

Just going out for dinner now...

We just got back tonight not long ago from looking at penguins on Granite Island off Victor Harbor and we've just booked the ferry trip to Kangaroo Island online.  We decided to take our car as well.  I've been advised by some people not to take the car because of the unsealed roads and other people say it is fine to take it.  Since taking the car will help us continue to play it by ear regarding our planning - which is how we have been doing it up until now and that has generally been working out well for us. 

We'll be taking the ferry tomorrow at 3pm.  Patrick was just about to book the 9am ferry which meant we would have had to head off to Cape Jervis to catch they ferry around 7am, getting up to pack up the car and get ready by 6am.  I would have stayed up all night worrying about not being able to get enough sleep as I do when I really want to sleep.  Luckily common sense prevailed and we booked the later ferry.

I have just a few minutes left on my internet card so I'm going to log on and post this.  I don't have enough time to upload photos so I'll do that when I get a chance.

Thanks everyone who commented and emailed me regarding my last post.  I hadn't had a chance to respond as we took off on this trip on a bit of a whim.

It's Official.

Yep, it's official and it's all good news.  I got the results of my CT scan back and have been declared officially in remission.  That is quite an amazing feeling. 

I wasn't too convinced at first because with all the scans and x-rays I had before I was diagnose, they never knew I had cancer until I went into hospital to drain the fluid in my lungs and do some investigation.  It was only then that I was diagnosed with mesothelioma and had all the lining of my right lung, part of my lung and a rib removed.

However the doctor who sent me for these last set of scans went over my pre-operation scans and showed me the tumors.  In retrospect it is easier to find them.   That made me more convinced that I am actually in remission because it wasn't that the scans didn't show them up at all but just that they were overlooked.  

I still have a lot of pain for which I am using Durogesic patches which I change every 3 days.  They help keep the pain in check together with some panadol.  Until now I didn't know how much of my pain was cancer and how much was still from the operation.  I have to believe now that it is all from the operation.  The operation cut through so many nerves that healing can take a very long time but it is great knowing the pain is from that and not cancer.

Mesothelioma is known for coming back from remission yet there are cases of people who are still living after being diagnosed many years ago.  In the Asbestos Diseases Support Group there are two women who have both had it for 6 years.  I am hoping that I am one of those exceptional cases who manage to beat this bastard.

I want to thank all of you for your unbelievable support, good wishes and prayers.  Knowing that so many people out there were supporting me like that gave me gave me so much strength.  I truly believe you all were the reason I recovered so well.

I also think I had terrific luck with the doctors I had.  I had the surgeon I had because back in December 2006 I had an appointment to see another surgeon about draining fluid in my lungs.   The one I was supposed to see was on holidays and I was in so much pain that I begged my doctor to find me another surgeon urgently.  I went in for surgery in February but just as I was about to be wheeled into theatre the operation was cancelled because the doctor thought the fluid was going down and so I would recover naturally and that what ever caused it, it wasn't anything serious.  A few months later I was in so much pain that I went back in to finally do the surgery and the rest is history.

This surgeon organised an oncologist for me who immediately put me on to Alimta for my chemotherapy.  I posted a while back that I met person from the support group who was diagnosed around the same time as me but whose funeral I went to.  

His surgeon was the one I was going to have but who was on holidays.  Like me, he found out he had mesothelioma during surgery to drain the fluid in his lungs.  Unlike me, the doctor put in a talc powder to absorb the fluid instead of removing the lining of the lung.  His surgeon then sent him to a different oncologist who put him onto a different chemo drug and not Alimta.  

Well I know there are so many variables involved here on top of  what I just mentioned that would have made the difference between him and me.  But I just think that things turned out so well for me and I do feel that the procedures that were taken for me - once I was finally diagnosed - were the right ones.  I keep thinking that things could have easily turned out very differently if the first surgeon wasn't on holidays.

I was so pleased that Alimta was finally listed on the PBS and I hope now that oncologists will use it as a first option.

I now have to keep vigilant and have checks every two months but I feel like I have won this battle.  Medical technology is moving so fast and so many people survive cancer these days. While mesothelioma is still one of those cancers that is incurable, I believe that that will change during my life time.

UPDATE:

Patrick read my post and he makes a few points:

1) In the June 2005 ct scan there was no cancer visible but there was fluid visible (which can be caused by lots of things). And apparently that wasn't picked up then.

2) As I understand it the procedure with blowing talc powder between the pleura layers is not to absorb fluid but to cause the layers to fuse together and thereby making it impossible to have fluid buildup between the pleura layers. I think the talc powder actually causes an inflammation that causes the pleura layers to stick together.

3) Dr A probably also does the talc powder procedure. I think when to do that or when to take out the pleura is decided on a case by case basis and Dr B might have done the same. We don't know. 

* I used Dr. A for my surgeon and Dr. B as the one I almost had to protect their names.

I should also mention that Choochie is very good lately.  We are giving him 3 insulin shots a day instead of 2 and he is responding well.  So it really is all good.