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.