The more things change...

Looks like this cancer is going to kill me after all. My job now is to make sure we have a long truce and postpone the inevitable amicably, for a long time to come.  Easily said than done.

A week ago Sunday night I passed out and when I got to my senses, I found myself on the bathroom floor with my head popped up against the wall. I was alone. Scary stuff. It took a while to figure out what happened (I have never passed out before) and got to my phone. I called the ambulance and then spent the next week in hospital.

I guess every part of my body was listened to, prodded and scanned. It's a new hospital. They just opened the wards a few months ago and still have a few things to smooth out from the patients' point of view. Otherwise, I was happy to be there, as it coincided with the horrible storm that hit our region the day after I got to the hospital. Luckily, my apartment was safe and dry when I returned, but then a day later we got a hailstorm, which sounded really scary from inside.

I've been at home for two days now. I slept some 16 hours the first night and I am still pretty tired. I sent the hospital release notes to my son and he forwarded them to a medical friend. The news is not very good. I just have to deal with whatever comes next in this decline to the end, however long it takes.

Many moons ago, my mother thought she had cancer and told me that if she saw that she was coming to the end, she would take something. She made me promise not to stop her. It was the hardest promise I have ever had to make. I thought about that in the hospital. Would I take something?  The answer is no, not from my present vantage point. Life is beautiful. I love the sunshine, I love my family and friends. Why hasten things? But then, my fractured rib has healed and I don't have any sharp pain.

Although I am very slow in my movements, I can deal with everything in its own time. I don't ever want to lose the mental clarity I have until the curtain goes down. Of course, that's what my Dad said. He was a doctor and looked on death as THE enemy he faced all his working life. He was determined to see him face to face and refused all morphine. I am told it was an epic battle. I wasn't allowed to see him, as I was only 12 years old.

Getting back to my situation. I have been very sluggish since I came home from the hospital. It takes an effort to get out of bed. Of course the weather doesn't help. It's been raining hard again and the temperature has gone down. Yesterday I succumbed and put the heater on for the first time. What a difference that makes. I feel like I am in a warm cocoon and never want to get out of it.

So, I have given myself up to the elements. My carer is coming today to clean and I am staying home. Tomorrow is another day. I'll be energetic tomorrow.

Slow days

Sorry, I've been pretty slack with my blog entries lately. That's because nothing was really happening. I  was in pain and had little energy, so I adapted my days to deal with that. I was slow with everything, including the administrative stuff I need to do before I move. It seems overwhelming.

Last month the Professor was away, so I saw his Registrar, who didn't know much about me and didn't really examine me.  Today, it was the man himself. My appointment was at 9am. I had my usual list of grievances: fatigue, pain, runny nose, cough, and various body functions, lethargy, dry skin, etc, etc. He gave me a thorough examination and sent me off for a chest A-Ray. 

Sure enough. I have a rib fracture on the other side from where I had a few before. OK, that explains the pain and pain. So, I went on the internet and came up with this very interesting explanation of a rib fracture. So this explains most of what I thought were side effects of the chemo. Maybe this Caelyx is not as bad as I thought. However, it can damage the bones, which lead to hairline fractures, so maybe it is. Now that I am aware, I am not going to focus on it anymore. Evidently the pain will go away after 6 weeks or so, so I am about half way through or more.

What else has been happening? Well, because of all these cancer treatment related things I have been less active in my social life. I am undable to go to functions at night, or if I do I need a ride and also need to sleep during the day to have enough energy. I can do one or maybe two things in the morning and early afternoon, but mostly I am done for after 2-3pm. For someone who has been as active and as involved in community and the arts as I've been in the past, this seems like purgatory.

For the past couple of months I seem to be on my bed for much of the day, either sleeping or watching TV, movies or play iPad games. For the past two weeks I've been getting bored with all this, so I put it down with getting better. Today's blood test confirmed it.

The liver function is better and the major organs are fine. The cancer markers are not normal, but stable, as they have not changed in the past month. Hooray! We can now make concrete plans for my move to the US and I will have only one more chemo - in May. I love it. I really look forward to playing with my grandson in person. I'll put up with the pain and discomfort.

My personal life has also improved in the past week. On Sunday I went to the Australian Museum to see the National Georgraphic's Wildlife Photographer photographer of the year exhibition. I go every year and this time I was determined to see it also, despite the pain. We rented a wheelchair (for free!) and it was fantastic.

On Monday, my final social justice project in Australia became a reality. We had 70+ people attend our Table Talk at the Jewish Museum to change the conversation about asylum seekers in our community, organised by the NSW Jewish Board of Deputies and the Sydney Alliance. The original idea came from my work with both organisations over a number of years.  It was fabulous and I hope the conversations will continue after I move back to the US.

On Tuesday, my body said: 'go to hell!' and I rested most of the day. Tomorrow we will have the same conversation, but I feel that things are moving in a positive direction, so I'll listen to the old dog and pay attention to its needs. What else can I do, if I want to get well and prove the prognosis wrong?

Pain Management

Yesterday was a special Meeting with the Professor. My son, Tunde, attended via FaceTime. It felt like he was sitting with me in the room taking notes, which he was 10,000 miles away in sunny Florida. It was fantastic. I love this new technology. Tunde and his family live in Southern Florida and we keep in touch via SMS, Skype, FaceTime and email. Skype allows me to read books and share music with my almost 4 year old grandson, Jalen. SMS and email are standard fare with both Tunde and his wife Zabrina. FaceTime is for when Tunde or Zabrina can only use their phones and we need to talk face-to-face. I've figured out that we see, hear or learn about each other more often than many families that live in this great city of Sydney. Like I said, this technology is magic and I love it.

It's especially important now that I am entering the last stage of this cancer business. Yesterday I found out the true prognosis and it's not too good. At least 2 years less than I presumed. However, it could be more if they find a medicine that works better than the ones we tried so far. So, who knows? I plan to be around for another 10 years out of sibling rivalry, to outdo my brother who died just 5 days shy of his 80th birthday just over a year ago. Just kidding, who knows what the future brings?

In the meantime, plans are going ahead for me to move back to the States sometimes in the middle of the year, to spend as much time with the family as I can. It's actually a planned move and has nothing to do with the current medical situation. I've always planned to move back by the time Jalen turned 5. He is just going to celebrate his 4th birthday in May.

I can't say that it's easy to chew on the latest prognosis, but I have incredible support, so I am doing quite well.  As far as I am concerned, the Caelyx seems to be working, because it has less side-effects than the previous pills.

The one big concern this past month was pain in my ribs. As I explained in my last post, it started about three weeks ago and it took some time to realise that I probably have a hairline fracture in there, because of the 'brittle bones' I acquired in 2007 after my first radiation treatment.

During the past week I tried all sorts of pain management techniques. I was given Endone to take home after my last hospital stay, but it has morphine in it and I don't want to get onto that just yet. So, I tried Panadine, which has 10mg of codeine. Well, it made me go to sleep. The next day I tried to take half a Panadine and a PanadineOsteo, which has no Codeine. That still made me woozy. The next day I tried a combination of 2 PanadolOsteo or just one during the day. It seemed better. Yesterday the Professor advised to take 2 PanadolOsteo every 4 hours. Lo and behold, miracles do happen. Today I'm almost completely pain free. Of course, it could just be effects of the steroid high after the chemo, but we shall see what happens when I'll crash from that either tomorrow or the day after. It usually happens then and I am pretty out of it with my sleeping pattern for a week. God willing the pain management will work and I'll be able to walk freely again. Well, I do hope so, because today I lost my walking stick and if I don't have pain, I don't need it. May it be so.

New Year wishes

I started this blog around New Year's Day, but have not been motivated to finish, as things kind of spun out of control. So, I am keeping the first two paragraphs that I wrote then, and then plunge into the present.

'Although I am an optimist by nature, I decided not to make a New Year wish this year. The last three years have been so unpredictable that I decided not to tempt fate. 'Let it be', is my current motto. I am taking things one day at a time (REALLY) and stopped worrying about what happens tomorrow. That doesn't mean that I have opted out of life, but it's simply an acceptance of the fact that, at the moment, I can do very little proactively, and it's OK.

These past two months have taken a toll on me. It got so bad that I was actually using a walking stick in my tiny apartment. That awfulness has passed and I can now get up from a chair like normal, without having to hang onto something.'

The good news is that I can now walk without a cane when I am not tired. The bad news is that this Caelyx has a very nasty side effect. About two weeks after the treatment in December, I started to get really tired, and noticed that when I moved too quickly I had to catch my breath. As it got worse, I went to my family doctor, who determined that my haemoglobin was very low, which is why I was tired and had difficulty breathing.

By the time I made it to my appointment with the Professor on 21 January, things got really bad. I was close to becoming a cripple again. JK, a lovely acquaintance drove me to the hospital and took copious notes, so that I could tell my son exactly what was said:

From all the tests that were taken during the past months: the haemoglobin count is way down, heart looks fine. That means that the fatigue and breathlessness is from the depressed haemoglobin level, which is from the chemo. There is a small amount of cancer in the bones, but in the latest tests the calcium level is normal, which means that the cancer in the bones 'has been hit on the head.' He plans three cycles with the Caelyx and then 'we'll see if you are getting better'. He said my plan to move back to the US around July is 'a realistic expectation.'

So much for the notes. Two days after this visit I had my next chemo, which was preceded by an infusion of two units of blood. Now, it takes two hours for one unit of blood to course through the veins, so you can imagine I spent a long time in the hospital - 8 hours to be exact. I was really lucky that my friend Eva took me home, so I didn't have to struggle by myself.

The next day I felt fit as a fiddle. I was in the 'steroid high' of chemotherapy and felt no pain. I had energy and could breathe! The day after the energy was gone and I had the normal post-chemo week, which is interrupted sleep, energy fluctuation and an inability to focus or concentrate on anything.

I've said before that my motto for unpleasant things is: 'this too shall pass'. Well, this did too and I was luxuriating in my ability to breathe freely and walk a kilometre, some of it without a cane. My garden is thriving and I've been able to make several meetings for my community organising project. Life was getting back to normal. Well, not quite.

Today is already the 7th of February. I am just moving into the third week of this chemo cycle. It started slowly a few days ago, but yesterday I had a real problem breathing a couple of times. So, I am assuming that my haemoglobin count is low again. I am vey tired this morning, and my ribs on my right side are painful. I have 'brittle bones' in my ribs from my very first radiation treatment and have had two hairline fractures there in the past 8 years. I am hoping that this is not a repeat of that. I am hoping that it's just age-related arthritis as we move into Autumn here in the Southern Hemisphere.  I was observing the fatigue as I lay motionless and brainless on my bed. It has a distinctly different quality. It feels like my bed is the perfect place for me to be and it won't let me move, it feels so quiet, and pain free if I stay completely still. My mind is still. Why would I want to move? I could stay like that forever. It's a kind of stupor. At first it's comfortable, but when you realise what's going on, life instinct kicks in and you want to get out of there and get on with the day. Ouch! Movement is painful! But, what is the alternative? Where is that painkiller. Let's get the day started. I have a lot to do.

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.