Christmas Day 2015

It's Christmas day. It's still early morning, but it's very quiet both inside and outside my apartment. I don't celebrate Christmas. I am Jewish. For me and my family Christmas is a sad time: a time to remember the dead and martyred family members who were massacred on Christmas Eve 1944 by drunken Hungarian Arrow Cross thugs, who wanted to 'prove' they were good Hungarians and Catholics by killing Jews.  So, in my family, Christmas is a time to remind ourselves that, no matter how good our lives are now, everything we have can be taken away in an instant by politics, hate and religious zealotry. This year, I am not alone. Sydneysiders are still coming to terms with the Martin Place Siege of a few weeks ago. It seems Christmas can draw the best and worst in people at any time in history.

I've actually spent the whole day in contemplation about the status of the world, the meaning of Christmas, the meaning of the chaos in our world on a macro scale, and in my cancer torn body on a micro scale. I haven't found a way to connect the two, but, according to my friend Lucy, I will probably find one. 'You usually do' - she wrote to me.

In the meantime, I've been totally preoccupied with my own health and psychological wellbeing. It's been a rough trot since I saw the Professor on 10 December.  Apart from making me a debilitated cripple, the Magace had no positive effect on the cancer. One of the markers went up, the other went down.  No good. I was told not to take it anymore and wait until the Mighty One figures out an alternative.

So, last Thursday, on 18th December, my friend Dahlia took me to the hospital to be my second ear. We were told we had to wait an hour and a half. She waited until the doctor came to explain what is going to happen. I was to have a chemo called Caelyx, on a 4-week cycle basis. The first week I can expect to feel tired and possibly nauseated, the second week my immune system will plummet and I should feel OK during the last two weeks. We shall see.

So far, I had an allergic reaction 7 minutes into the infusion, which was sorted out quickly, but I felt I was the patient in one of those TV movies depicting my hospital, RPA.

Two days later, I was back in the emergency room with severe chest pains and a general inability to cope. After zillions of tests, X-rays and heart monitoring, I was admitted with impaired kidney function and high calcium. By Monday afternoon all was clear and I was allowed to go home, pretty much none the wiser, as the Professor is overseas, probably on one of his interminable lecture tours.

In any case, like they say, all's well that ends well.  By the time I finish this entry, it's late afternoon on Boxing Day. I've spent most of the early afternoon at the hospital ER, waiting for a blood test to see if the calcium levels have come down to normal. They have!

In the past three days I've learned to manage the bone pain with a few regular doses of PanadolOsteo and every day I can feel the fog of the medication side effects of the past few months lifting. I am still incredibly slow in my movements, but I am mostly pain free.

I can think clearly, enjoy music again and, weather permitting (we have had changeable strange weather with thunder storms), I can build up my strength by walking and swimming again. Maybe this will be a good summer, after all. My next meeting with the Professor is 21 January 2015. I do hope he has some good news for me.

You don't know how I feel

'I am sorry, but I am NOT clinically depressed!' - I screamed in my head, as a friend (not the first, nor probably the last) who suffers from clinical depression veered off into a description of her condition as a way of empathising with me, and to 'make me feel better'. She was not to know that this was the last straw for me. I am tired of people trying to comfort me, either by telling me that I have something similar to what they do, or by telling me that my situation is not so bad compared to theirs and go into great detail about whatever medical conditions they have.

I have finally had it. I have my own problems and I am not strong enough to listen to others' ad infinitum!

I have not been well at all since July or August, when the Exemestane stopped working. We have tried several combinations of pills: Everolimus alone, in combination with Exemestane, lower dose of Everolimus and now this Megace. Either they don't work, or they work, but the side effects are unbearable. I live in limbo, floating from unpleasantness to unpleasantness - mostly sleeping. With this Megace I sleep 6-9 hours a night and then have 4-5 hours of naps during the day in small increments. And when I say nap, I mean I get so sleepy that I am off with the fairies as soon as my head hits the pillow. I can barely walk. I have difficulty getting up from a sitting to a standing position, and with Megace I sometimes have difficulty breathing. I have trouble driving at night, so I go out only when I can get a ride. Yesterday I realised I get too tired in large crowds, even when it's people I have known for years and really want to catch up with. Yet!

I keep my calendar active. I diarise every event I am interested in attending. I am active on social media and the phone. I stopped buying theatre tickets, but if I must, I do. The reality is that I am fully engaged in life, but in small doses. I am tending my garden and hopefully will start going back to swimming again this week. I did do some qigong a couple of times last week, and I continue to focus on my social justice project.

I really don't see how my symptoms are similar to clinical depression! My brain is a bit foggy, but we've been there before, with 3 years' of chemo-brain. That's why I do brain exercises BrainHQ and Lumosity, so it won't get really bad. Actually, it is quite fascinating how, with Lumosity, you can track your brain function changing with the different medications. (Yes, it's fascinating for an ex-science/medical writer).

I am getting tired of people trying to analyse 'what's wrong with me' and telling me that maybe the Professor is not so amazing after all. Well, that sometimes does go through my mind, but then this week I remembered a similar situation, when I had very strange symptoms and it took 35 tries to find a medication that my body would tolerate. That was almost 30 years ago and I am still here, and the medicine still works for that problem.

The memory of those times brought into focus very clearly that I am going through the same thing. My sensitive body is rebelling against the onslaught of heavy medication. Eventually, we will find the right one, and until then, I just have to manage the best I can. For the first time, it really forces me to make those end-of life decisions that I have refused to face. Actually, that part hasn't been as hard as I thought it would be. It's been very enlightening, and I am at peace with it all. Now, it's learning to accept how other people react to my condition that's proving so bloody hard to deal with.

The truth is that I may live anywhere from 1-20 years and life it still beautiful. The devil is in the detail.

Frustrations

I can't believe we are in December already. Where does time go? I seem to be sleeping most of the time, or trying to follow some schedule I never really stick to.

I can't work anymore. Actually, that's a good thing, because my temping job is changing owners next year and I don't want to get used to a new unhealthy working environment. The job is market research interviewing for the NSW health department. It can be interesting, and the crew is great, but at the moment I simply can't spend hours in front of the computer screen without being able to rest (meaning lie down) periodically. So, that's good bye to paid work for a while.

Also, if things were going according to plan, I would now be sitting on the beach in Ft Lauderdale or Miami, Florida with my family, hugging and sharing stories with my grandchildren. That is not happening. I am sitting in Sydney, enjoying the daily thunderstorms. Well, actually, I sleep through them.

The good news is that I think the new medication, Megace, is working. However, I am always tired and sometimes have trouble breathing. I read some of the side effects, and it said 'adrenal insufficiency'. I am totally devastated. I asked my doctor to not give me anything that affects the adrenals, because I have a problem there already. He agreed. Now, I discover that he had ignored our agreement. I am devastated. Who can I trust? I already have a long list of complaints for when I see him next week, but now I am just devastated. I have to think this through.

It's several hours later and my treacherous body has gone through a number of hoops. First of all, as I was writing the previous paragraph, I was actually having one of my 'adrenal episodes'. I've had these since 1985 and it always appears in different ways, so I never recognise it until it's over, when I shiver and my teeth are chattering. Then, I am happy that 'it was only an episode', and I get a big burst of energy and some other symptoms that tells me I will be fine. This is what happened today, and by 5:30pm I was ready to meet a friend to have dinner and go to the theatre. It was called 'Stories from the Heart(land), a verbatim play performed by graduating students of the Actors Centre Australia (ACA). It was fantastic. Unfortunately, the first half was over an hour long, and I got too tired to stay. Nevertheless, I made it, and I am ecstatic.

So, it's been a very long day, filled with good and bad, but the good won out, so I go to sleep happy.

Setbacks and poo days

How much poo can a human body hold? A lot. That was my great discovery this past week. Exactly a week ago I started vomiting. After the fourth bout I called the Lifehouse and they told me to go to emergency. I am really blessed with friends and one took me almost immediately. Four hours later I was admitted to my very own private room.

The view itself was worth it, but nothing else. Pain, frustration, two days of vomiting and after five days I was declared 'cleansed' of poo and allowed to leave.

In the meantime, the Professor confessed that he is running out of affordable options to try to control my cancer. 'It's slow growing', he said, but my mind went wild. What if he can't find a pill I can afford? What if the slow growing becomes fast growing? What does it mean to have such a bloated belly? Will I ever get a waist again? Will I ever get to see my son and family in the US? Weep, weep, weep.

When I came back down to earth, the Prof explained that the vomiting is caused by a full gut. Despite the fact that I had been regular as clockwork, either because of the medication, or the cancer in the Omentum, the gut did not void properly. and when I put anything in my mouth, there was nowhere for it to go, but back up.  The lucky thing was that there was no blockage. Well, that sure is a blessing, because I know two women of a certain age, who have had blocked bowels this year and had to have life saving surgery. I really don't want to go under the knife again. So, what can I do about it? Take laxatives and wake up at night when they take effect. There goes a good night's sleep.

So, good bye Exemestane and Everolimus. I am now taking Megace. We shall see.

In the meantime, my much anticipated visit to the US on 22 November has been cancelled. I have to be stabilised before I can take such a long trip. I have to admit that it's a relief. I simply don't feel up to it. Physically, that is. Mentally, and emotionally I am crushed. Nobody makes tea like my son when I am sick. Nobody gives hugs like my family. I miss them all.

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.