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.