A momentary respite

For the first time in many, many months, I had a moment of feeling full of energy, full of life, full of the joie de vivre I used to have BC (before the Big C). It was a very conscious, very aggressive burst of energy. Like the body said: 'Hey you, thanks for listening, I am going to be OK'.

Phew! Stop everything. Must savour the moment. This is fantastic! Baruch Hashem. Thank you G-d! OK, I am not going to go overboard. I am still a confirmed agnostic, so I am not on my knees praying, but hey, I am thankful to the universe, my doctors, the scientists who developed this drug and all the cancer sufferers who went before me and suffered while new drugs were tested on them. I am thankful to have had this momentary feeling of total well being. It's gone already, but now I feel new hope.

To add to this momentous occasion, the sun is shining. It's a glorious spring day in Sydney with a gentle breeze. I feel like going out into the garden to liberate the new lemon tree from all the weeds that have grown around it since it was planted by a friend for my birthday in July.

I feel like going down to the the Glebe foreshore for a long walk.

I feel like shouting to anyone who will listen how great it is to be alive.

I feel like kicking up my heels dancing, and forgetting about the 'later', when I know I will be on my back, on my bed, brainlessly watching a movie, because the body got tired of being so bloody 'healthy' and decided to give another warning not to overdo things.
But, I am smarter than the old bod. I am savouring the moment and not doing all the energetic things I want to do. I am slowly, but steadily continuing with what I had planned for the day. That way, I am going to make it to the theatre to see my good friend James Balian's new play as planned.  I've been so looking forward to it.

Everolimus

I hate the word 'journey' applied to cancer. For me a 'journey' is a joyous affair. It's new adventures, new people, new sights, new excitements. You certainly can't say that about what you have to deal with during the so called 'cancer journey'.

To begin with, the BIG C word puts the fear of death into you. Then, the impersonality and intrusiveness of the tests and procedures demean you. Later the chemo and radiation fry your body and mind, until you don't really care what's happening, because you are pretty 'brainless' which means you shut down emotionally. These things happen to someone else, NOT ME! Then, you are told you are free. You are clear and you can get on with your life. Whoopee! Only to be told a few years later that, no, the cancer is back. Darn it! And the cycle of depersonalisation and recovery repeats itself ad nauseam.

I don't know if it's just me, but every time I am on the upswing I forget about the downturn. When things don't go too well, I am surprised. Surely, after 8 years on this roller coaster ride I should take things in stride. I decided to do just that with this new Everolimus.

So, I made the decision to wait for the first instalment until Monday.  My rationalisation was to make sure the hospital was fully staffed (as opposed to the weekends) in case I have a nasty side effect. The pill has to be taken on an empty stomach, but I have another pill that has to be taken on an empty stomach, so my pharmacist and I worked out how to deal with that. Take the old pill first and then the new one two hours after breakfast. Worked like a charm, except that I was hitting my bed almost the whole day, I was so tired and 'brainless'. Reminded me of the cyclophosphamide that made me feel the same way for about 6-8 hours of the day.

I can't function like this, I told myself, and made another proactive decision: to take the second pill at night. This way I would be tired and debilitated while I was asleep. I am happy to report that I felt fine the whole day (except for the pain in my left leg from not walking around enough). I am just about to have dinner and wait the required 2-3 hours to take Everolimus as a night time medication. I will report in a few days how this experiment had worked out.

Words and Definitions

So, the week is over. I saw the Professor this morning and the news is not good. The cancer markers are rising. The body was right. The Exemestane is not working anymore. He is now putting me on a new drug, called Everolimus. What kind of name is that? I wonder who dreams up these drug names.  Of all the medications I've had to take over the years, this is the strangest name, for sure. There must be a good story behind it.

Everolimus is a fairly new drug. It inhibits cancer cell growth and I think it's still in clinical trials for various uses, such as tissue rejection in organ transplants and, like yours truly, for metastatic breast cancer in post-menopausal women who have already been treated with other drugs. It's so new that the Prof had to get special permission to prescribe it. The reason being, I later discovered, is because the market price is $5000 for a month supply. With the permission I pay only $6. Thank you Australian Medicare.

I've pretty much stopped looking things up on the web, except drug reactions. So, after I got home, I got into it straight away. The literature talks about using this drug as an adjuvant with Exemestane. I don't recall the Prof telling me to continue taking the Exemestane, so the first doubt is planted in my mind. Now, I joked in my last missive that 'I pick up the phone and call the doctor. He is away this week.' But this week is a different matter. He really is on the plane to London as I write this. What to do? I know, I know. Stop looking things up on the net.

But things CAN be useful on the net. I completely freaked yesterday when I overheard the Prof describing my condition as 'Stage 4' when he was getting the authorisation for prescribing the Everolimus. STAGE 4, screamed my head and I already saw my son weeping next to my grave. So, as soon as he put down the phone, I pounced on the poor Prof. 'You mean I now have Stage 4 cancer?'  He had a good laugh at that. 'You have had Stage 4 for a long time, and we'll make sure you are going to have Stage 4 for a very long time to come.'

WOW! My mind was reeling. I was very upset. Luckily I am now in the habit of seeing my cancer counsellor a few hours after my appointment with the Prof, and she assured me that she sees many people who live happy and productive lives for years with Stage 4. Phew, OK. She assigns me homework, to write a dialogue in my blog reassuring my body that I will take care of it. Well, I am not sure I am ready for that yet, so that will have to wait for another blog.

First thing this morning, I gravitated towards my laptop to check out Everolimus again on the net. I am glad I did. One important fact finally sank in: nowadays Stage 4 is not generally called that, it's described as Advanced Breast Cancer.  Well, of course! I have had advanced breast cancer for almost two years now. What's the big deal?

Isn't it strange how words and classifications changes the way we think?  I mean I have had advanced breast cancer for years and I knew that, in my case, I could look forward to years of ups and downs, with good quality life in between, until it's my time to kick the bucket. But not yet!  So, why am I suddenly terrified when I hear the words Stage 4?  It's the same package in a different wrapping. Being a writer, I am a stickler for words, so from now on I will only think and say that I have 'advanced breast cancer'. Doesn't sound so bad, does it? I can live with that.

Gripes

It's good to whinge now and then. Get the frustrations out and move on. I've been winging for a week now, because the pain in my joints is getting worse from the Exemestane and it's particularly bad today.

I wrote this a week ago. Probably went to sleep after taking the pain killer. Now, I want to complain about my gut. Ever since I went back on the Exemestane at the end of July, I have had bouts of really bad gut pain, or pain just under the ribs, where my hiatus hernia used to bother me, and throw up anywhere between 1-5 times. I did see the Professor once, but he didn't seem fussed. Of course it's not his gut and not his day completely washed out.

I am having one of those days today. After a fitful night of waking up to go to the bathroom, I felt very nauseated and took a Maxalon, my wonder pill against nausea. Well, well, well. Within 5 minutes I was vomiting.

I am very frustrated, as you can tell by now. I was supposed to go to a meeting this morning in my community volunteer capacity. I really wanted to go, to learn. I had to cancel. Grrrr.....

I am frustrated. I have come up with a project to help community harmony and am not amused that my body wants all this attention. We are having a mind/body disagreement at the moment. It goes like this:

Body:  Hey babe, I want you to pay attention....

Me:     Ignore it...

Body:  OK, sorry I called you Babe, but will you listen to me?

Me:     Oh, you talking to me? What's wrong.

Body:   I don't know... grumble....

Me:      Well, let me know when you know....

Body:   You don't even care....

Me:       Of course I care, but I can't do anything if you don't know what's wrong with you?  You look great! You look healthy, the     doctors told you all your lab tests were normal....

Body:    NOT ALL!

Me:       So, the cancer markers are up a bit. That's nothing to worry about.

Body:    I'll show you..... (the body heaves, shoves, produces pain in unlikely places)

Me:       OUCH!  You don't have to do that!

Body:    Yes I do. If I don't make you really sick, you don't listen to me. I am just giving you some warning signals that all's not well.

Me:      OK, OK.  I GOT IT. But if they can't show anything wrong in the lab, they have no idea why you keep warning me. And you are driving me crazy.

Body:   Well, it's your funeral. I am warning you. PAY ATTENTION.

I pick up the phone and call the doctor. He is away this week.

OK, so there's a bit of artistic license there, but really.... I am very frustrated, but writing it down makes me feel better. Roll on next week.

One step forward, one step back

My big fat 70th birthday seems a long way away already. Granted I've done quite a lot, but there's been movement in the negative direction of my cancer and it makes me weary. Is this how it's going to be? How long? Do I have time to do all the things I want to do? Will I see my grandchildren grow up and have their own children?  Existential questions that have no answers. I don't like that. I need to know how to plan things, even though I am pretty good now about being flexible with my time and energy.

OK, let's talk turkey. The Big C. I saw the professor on 23 July, a couple of weeks after seeing my GP for a bout of heavy vomiting, which pulled a muscle in my chest. Felt like I had hairline fracture of the ribs. It wasn't. And my regular blood tests were perfectly normal. I joked that I am healthy as a horse, the only thing wrong with me is metastatic breast cancer. We laughed. Cheery thought.

So, I went to see the Prof with some trepidation. My fears were somewhat confirmed. The cancer markers have risen, so I have to go back on Exemestane. Actually, he gave me a choice of either Exemestane or Tamoxifen.  I recalled all the horrible side effects of the latter and chose the big E, knowing full well that it will make me a cripple, or at least cause great pain in the joints. Well, I was going to deal with that - with acupuncture.

I had been going to an acupuncturist for almost 15 years after a nasty ankle injury that would not settle. My guy is an amazing Traditional Chinese Medicine (TCM) doctor, who has sorted out most of my aches and pains and hormone imbalances over the years. When I go to him regularly, everything seems to be less extreme. Unfortunately, his fees have gone up over the years, so I haven't been to see him for over a year. Now, at the Chris O'Brien Lifehouse they are offering all sorts of allied services, including acupuncture – at half the price. Yes, I decided to try it out. The woman is very good, but the first two treatments were so deep (with electricity) that I was exhausted for two days after treatment. Last week I asked her not to use electric current. It was better, but still not as good as my old man. I am torn whether to go back to him or not. My private health insurance doesn't pay for acupuncture.

It's a funny thing about acupuncture. People think you have to 'believe in it' to think that it works. What utter nonsense. I don't 'believe in it'. It works for me. Chinese herbs don't, but acupuncture does. It works, because my man knows what he is doing. He is steeped in the tradition. Each time I see him, he takes my pulse and treats me according to what his examination of the moment requires to balance my metabolism.  He is not a western trained medical doctor who has taken a 6 months course and thinks he is now ready to DO acupuncture. Not that the woman at Chris O'Brien is like that. She is not. But somehow I sense a difference and I can't put my finger on it and that bothers me. I have to reflect on that.

I feel like I am at the beginning of an unreal reality, if that makes any sense. I know I will never be the same as I was, but I can't figure out – yet – what I'll become. In other words, how to minimise the various side effect that may come my way, not lose hope and continue with the things I love to do – write and get involved in social justice issues. I feel very unreliable and fear that this may become a permanent feature of my life. How do you manage things within total uncertainty? That's another thing to ponder.

Well, now that I have completely depressed myself, I guess I will stop thinking and look at a picture of my son and his family who are in far away Florida and pray that I will make the visit this coming November. I've been planning a visit for the past two years, with no success. Maybe this will be the best birthday present from the Universe and I'll make it this time?  I hope so.

Another milestone

 On July 1 I turned 70. A milestone. Since 2006 my life has been dotted with major and minor milestones relating to my Big C and/or other health issues, work or not being able to work or going back to work, family events - the birth of my grandson, the death of my brother – etc, etc, etc. This milestone was going to be different.

I am going to be 70 only once! - I told myself as I planned a celebration and thanksgiving for all the good things in life, my family and friends, and the beauty of life and nature. 'It's time to turn away from the dark things that are afoot in the world today, the hate, the intolerance and the inability of people to get along. For once, I will focus on the positive, the beautiful and awesome'.  And I did.

It actually started with my friend Marianne's decision to organise a party for me with our mutual friends. Marianne is my oldest friend in Australia. She called me to introduce herself two weeks after my arrival, as she was friends of my family in Melbourne. We have been friends ever since and she has been my rock when things became hard for a while.

While Marianne 'did her thing', I thought it would be nice to have my own party to thank all the people who have supported me during my illness last year. As I don't have much money, I negotiated a very reasonable per head price for a party with my local cafe, which opened about the time I was first diagnosed with cancer in 2006, and where I have been a 'regular', with all my ups and downs.

Both parties were sensational. The Cafe Cabaret was first. I had friends from almost every aspect of my eclectic life - family, writers, filmmakers, singers, actors, scientists, journalists, community organisers, etc, etc. My friend Dahlia Dior adapted Sophie Tucker's 'Life Begins at 40' monologue to 'Life begins at 70' and sang Edit Piaf's 'Non, Je Ne Regrette Rien', which brought the house down and everyone in the cafe sang it with us. Then, my multitalented actress friend, Abi Rayment read the poem my friend Sue Cartledge wrote for the occasion. And, of course I gave a big thank you speech for all that people did for me during the past year. One of the most touching moments for me was when James Balian, a writer I greatly respect, but don't know very well, dropped by 'just to give you a hug', because he didn't have time to sit down with us. His thoughtfulness really made my evening.

Marianne's party was different. It was all old friends who have known me for a very long time and with whom I have had very close personal bonds almost from my arrival in Sydney in 1991. It was amazing. The food at both events was sensational. I am still watching my weight from it (just kidding). I think the T-shirt from Tunde is very appropriate for my week of celebrating My Big Fat 70th Birthday.

And a heartfelt thanks to everyone who enabled me to forget the Big C for a whole week. It was a wonderful respite. Thank you.

Mind/Body days

Thursdays have become full, navel gazing days. Sorry, I should say personal growth days. A day when I focus on both my mind and body to get well, or at least better, from past misadventures.

OK, so what's with the mind, you might ask. Just very briefly, I have had what some people call: an interesting, or eventful, or amazing life. Oh yeah?  Well, if you can call losing a twin sister in war, escaping from a revolution, being raped, beaten, and who knows what else by spouses and others, etc, etc. Yes, I have had an interesting life. I don't talk about it normally, but the fact is that I have had many episodes that engendered post traumatic stress - the nightmares, the fears, the ruminations (that's what it's called, I am told, when your mind goes round and round with the old stuff). Yes, I've learned to cope and got on with life. Or did I? Since my brother died last December, some of the old ruminations have resurfaced and with the constant reporting of events in Syria and what's happening with the children there, some old scars from being a child refugee and stateless person for 16 years have also reopened.

One day, I just had enough.

'Isn't it enough that I have cancer, I now have to revisit all this crap too?' I cried into the emptiness of my apartment. I realised that, in order to deal with my metastatic breast cancer (official diagnosis now), I will have to lay the past to rest, or I won't cope. So, I took my own advice to my mother, whom I tried to get to see someone in the 1980s to deal with her Holocaust trauma, and referred myself to STARTTS, the NSW Service for the Treatment and Rehabilitation of Trauma and Torture Survivors. I am now going through Cognitive Behaviour Therapy (CBT). It's kind of interesting in an intellectual way, but am not too keen on having to write down how I feel, what I think, etc. I mean how do I know? It passes and I forget. Maybe that's how I coped before, just putting it out of mind. How do you undo a lifetime of habits that worked, but apparently now don't work as well? A conundrum

So, now to the body part. I have my session with the psychologist at 10am and then at noon I go to the new and fantastic Chris O'Brien Lifehouse, where Michael, the exercise physio, puts me through my paces in cardio exercises to improve my strength and balance. It's much more pleasant than the psycho stuff, but since I hate the gym, it's still a challenge.

Tomorrow is Thursday, but it will be different. I will go for the CBT, but at noon I will be facing The Professor to learn how my cancer is doing. I am not looking forward to it. I haven't been feeling very well for the past couple of weeks. The pain in my joints is getting worse and now I also have pain in the chest area.  I haven't gone to the emergency to check whether it's a heart attack, because I have so many aches and pains that I am pretty sure it isn't. How do I know? Well, of course I don't, but I've been doing chest muscle strengthening exercises, among the many others, so it stands to reason that they are probably screaming for me to let them be.

Nevertheless, I am a cautious madam and have a long list of grievances and questions I take with me to the Prof.  I'll spare you the details for now, but will report in my next missive.