Sleeping Beauty

One of the first questions doctors ask me is: how do you sleep?  Fine, I say. In fact, sleeping is the only thing I do quite well at the moment, thank you. With all the pill changes of late, the one thing that has been consistent is my ability, nay the need, to sleep any time.

In the past couple of weeks I have become a veritable sleeping beauty. I get tired easily and every time I get home, the first thing I do is crash on the bed and – yes, you've guessed – sleep. Yesterday I was in so much pain from the Exemestane, which I am back on every day again, that I had a bit of trouble with the sleep. But I have to admit that, even with that I must have slept through most of the afternoon and the night.

This morning I had my hair cut. Then, I had coffee with my friend Sue and did a very little grocery shopping, while the lads in the car wash resuscitated my Mitsubishi Mirage to its proper glory. I barely made it to the car, I was so exhausted and.... yes, crash time.

Two hours later, I am up and about. Almost bright eyed and bushy tailed. Well, not quite. My shoulder has just started complaining of pain. My brain wants a break and my garden says: hey girl, it's time to do some weeding.

OK, I'll heed the call. I wonder how long I'll have the energy to liberate the lemon tree from the encroaching grass.

Onwards and Upwards

'Onwards and Upwards' was my grammar school's motto in London. Camden School for Girls. Established by the 19th century education pioneer Frances Mary Buss, it was an amazing place with a very strong feminist tradition.  We were told we can do anything we want, BECAUSE WE ARE WOMEN. Of course reality was somewhat different. Eight of us wanted to be doctors, but only one made it. You guessed - she came from a family of Old Boys at the medical school she attended. (I forget which, and I understand she was an outstanding doctor, who unfortunately passed away a number of years ago.) Nevertheless, I think you can tell a Camden Girl if you have met one. Most of us are forthright, creative, interesting and involved with our communities.

Why am I reminiscing about Camden? Maybe because today is a beautiful, in fact balmy, spring day. My garden is blooming, thanks to the minimal effort I put in - with some help from friends - to tame the jungle I inherited when I moved in here last year.

Gardening is very important to me. I am definitely NOT a great gardener. Nevertheless, I love to putter and dig the earth. Maybe it reminds me of my childhood when I was sent off to Felsőgöd to stay with my aunt Giza and uncle Ernő Fazekas for the summer. In those post-war years (we are talking 1950-1954) the quaint town of today was a third world village. The roads were damped down earth, with geese monopolising the centre. There was no electricity or running water. The well in the yard served our water needs and acted as the refrigerator as well.

Each house had a patch of land – maybe half an acre, perhaps more – where my uncle had at least 8-10 fruit trees, and he cultivated all of the fruits and vegetables the family needed: 8 varieties of Hungarian peppers, apples, pears, strawberries, rasberries, potatoes, lettuce, etc, etc. There was a mouser cat, whose litters were carefully drowned in the big bucket, and chicken for fresh eggs. I don't know if aunt Giza actually killed the chicken. It was probably uncle Ernő who had to do it. He worked from dawn to dusk as aunt Giza's favourite phrase to him was: Can you please cut some wood while you are having a break? Indeed, everything was done with wood – cooking and heating. So, uncle was always very busy. In the first couple of years of my stay I played with the village kids. We stole fruit from the neighbours, took the animals grazing in the communal farm lands around the village, and helped with the harvest. All this stopped in the third year of my summer visits. Evidently, it became known that we were Jewish and I was not welcome in some homes anymore. That split the village. The old folk took pity on me and invited me in to help myself to their fruit. This made me a traitor in the eyes of the other kids, which made my life confusing and very solitary. In the end, I spent most of my time helping uncle Ernő with the garden, cultivating my own veggies and playing pretend herding when I was done. No wonder I refused to be sent there after I turned 10.

Wow, I haven't thought about  Felsőgöd in decades. Maybe it's this cancer. Tunde has been urging me to write my memoir for years and now I find that I am beginning to worry that I may have left it too late. What if I don't have another 10 years? Indeed, what if?

So, back to the present. As I said, today is a beautiful day. My nose has stopped bleeding and my head is clear for hours at a time. I 'feel' energetic, but when I start moving, I tire easily. For the past couple of days I've been busy slowly cleaning my apartment, washing clothes and bedding and doing the everyday things that have been left undone for a week. All this very slowly, with long periods of TV watching, computer games, answering emails and checking Facebook. I guess that's what hip Camden School For Girls grandmas do when they tune out from having to deal with nasty nasty Big C and its' medications side effects. I can see the light at the end of this tunnel, and so I fall back on the old school motto: Onwards and Upwards.

A bad day

Yesterday was a terrible day. I had absolutely no energy and I threw up big time. Kind of an apotheosis of what's been happening to my poor body since I've been taking the Everolimus+Exemestane combination. I was really scared and my mind rebelled too and I went into meltdown.

It was not a good day. By the time I got to my senses my GP had gone home, but I had left a message with Keith Cox at Lifehouse earlier and he called me back at the end of his busy day. God bless Keith! I saw him this morning. What a cool cucumber. He listened carefully, took my vital signs (all normal) and ordered a blood test (platelets dangerously low). Then, he conferred with the Professor, and the upshot of all is that I have to stop the Everolimus and just have to continue with the Exemestane. OK, back to the joint pain, but that was bearable. This fatigue, bleeding nose, and other symptoms are not.

Tonight I did not take the dreaded E and am hoping against hope that I will feel better by tomorrow. So bored with watching mindless TV and playing mindless games on iPad. I just can't focus on anything and keep falling asleep.

Right, I am not complaining anymore. I am giving the body a well deserved rest until Tuesday, when I am hoping to be able to continue with my normal life and get back to work and my social justice project. I have so much to do! I get energised just thinking about it, even though my body is limp, my mind is mush and I am an emotional basket case.

I fall back on my motto: this too shall pass and soldier on. I will see the Professor next Wednesday, which will be interesting. Wonder what tricks he will have up his sleeve this time? He always has a Plan B.

Oops! I goofed

The respite didn't last long. But it was so nice...... (sigh)

Ah well, back to reality.

And stupidity

And new challenges.

First the stupidity.

I goofed. Big time. Last time I saw the Professor, I thought he said I have to take the Everolimus and forget about the Exemestane. For almost two weeks I did just that. The pain in my joints disappeared (Hurrah!), but I was really fatigued. I could barely move. Then, I got the Prof's letter to my GP (I always get a copy) and it seemed to say that I should be taking the Exemestane and the Everolimus together.  WTF! (excuse my language) I've already taken back my two boxes of Exemestane to the pharmacy to be properly disposed of.

I called the hospital and yes, the Prof came to the phone. 'You take it together.'  OK, but one has to be taken with food and the other one on an empty stomach and I usually take both at night. Well, you take the one with the food, wait two hours and take the other one. Yes, OK, simple, I understand, but really....

New obsession to get used to. Have dinner latest by 8pm and take the Everolimus 2-3hrs later. I can deal with that, even if it embarrasses me. My iPhone alarm is set for 8pm for the Exemestane. It rings when I am out in company. 'I am sorry, that's my alarm.'
I just hope I don't forget to turn it off in the theatre or other quiet place I go to. My mind is a bit mush nowadays.

Now, as if all that were not enough, on Thursday night I woke up with a pain in my neck. Seemed like a ping-pong ball was hiding in there pressing against my windpipe. I was terrified. It was way after midnight and I had no idea what to do. I had just started the new pill combo on Wednesday! Is this one of the side effects? OMG!

I breathed deeply to calm down and waited until the morning to talk with lovely Keith Cox at Lifehouse. He thought it may be an infection, but let me talk to the pharmacist to discuss the possibility of a drug reaction. No, the golf ball is definitely not a side effect. I was much relieved and we discussed other changes I've noticed, such as a slightly bloody runny nose, very dry skin on the face and elsewhere, as well as very dry nostrils. She said that was from the Everolimus.

Now that I know the cause, I have some treatments for these side effects. For the dry skin I use QV cream and shower wash. It seems to work OK, and for the dry nose I have resorted to Hungarian folk medicine and do chamomile inhalation. I love it, because it's also a great facial and it clears the nose and lungs. I feel so fresh after.

As to the mini-golf balls in my neck? One of my friends had a terrible cold that turned into pneumonia. She has been struggling with that for weeks and weeks. She told me her cold started with swollen glands. OK, so that's probably what I got too. A bloody cold.
We are having a long Labour Day weekend here in Sydney, so nothing is open and my condition is not an emergency, so I am going to wait until Tuesday (two more days???) to see my family doctor. In the meantime, I just treat it like a cold, but am resting more and making sure that the body is properly taken care of.

So, my new ode to my body?

Hey little bod, you've been through the trenches.
I am going to try and help you in any way I can.
I'll treat you like a friend and put our differences behind us.
In return, please get well, so I can get on the plane in November
and see my boys and girls.
Let's see if we can have some fun for a change. Just you, me, and the family!

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.