Ekundayo

Ekundayo is one of the many names my son Tunde received from the Nigerian side of his family when he was born. The name means 'great happiness after much sorrow' and was given to him by his Nigerian grandmother, Ajoke Olusola, to indicate how she felt on hearing the news of his birth.

I just received a phone call from Tunde. He finally popped the question to Zabrina and she said YES! Christmas has suddenly a totally new meaning and great happiness has replaced the sorrows of Christmas. Life wins out! So, welcome Zabrina and your two kids - Nikeya and Jerrel – to our crazy family.

Mazel Tov and L'Haim! Congratulations and welcome and may you have a long life together in good health and happiness!

Christmas Eve

Channukah came and went in a fog, but there was one bright spot on the last night, when I decided to ignore the fatigue and go to the JSA (Jews for Social Action) Channukah party. Well, this picture speaks for itself, I think. After 4 glasses of wine and the good company I felt no pain and got home at midnight. Maybe it helped that I had 14 hours of sleep the night before, having crashed shortly after I boasted of whim and vigour in the last blog.

In any case, today is another day. Sue C. and I went to the Rocks markets in the city, and heard some great jazz, but that pretty much took care of the day's activities for me for the day. My sleeping pattern has been severely disrupted by the 14 hour sleep marathon, it seems. For the past two nights I slept only 4 hours each night. I seem to remember having read somewhere that chemo can have this effect. Well, it's pretty annoying, so I hope it doesn't last too long. Christmas Day will be spent quietly, with a book.

But, it's still Christmas Eve. It's strange how some aspects of family history dogs you to the end of your days. In our family Christmas Eve was always a day of mourning. Each year on this day mother lit the yartzeit (memorial) candles and wept for her parents, sister and niece. I sometimes got irritated when I was younger and wondered whether she would ever stop. I never imagined that I would continue the tradition after she died. True, I don't light the memorial candle and I don't cry, but almost 20 years after her passing, I still pause to remember and Christmas Eve continues to haunt and hurt.

Christmas Eve 1944. The Russian army was already advancing to take Budapest, which they did a few weeks later, on 16 January, 1945. But on this night, 100 people – friends and families of the dreaded Arrow Cross (Hungarian Nazis) in the Zuglo district of Budapest – were enjoying a Christmas party. When it was over, the families went home to get ready for Christmas Day, while the men stayed and drank some more. In a drunken orgy of fervour to prove their worth as Hungarian Patriots, the men systematically massacred the 30 prisoners they were holding for processing in the cellar of the Party headquarters - among them, my grandparents, aunt and 9 year old cousin Juditka. Twenty years on, in 1967, 19 of the murdering bastards were tried and convicted at a big trial in Budapest. I read the horrifying details of that night in a book detailing the trial, that I found at the National Archives in Budapest two years ago . I was glad my mother died not knowing the details of that night.

I am also glad my mother is not alive today to witness the orgy of madness in the world today, including obscene politically motivated events like the recent Holocaust Denial conference in Iran, and the rising antisemitism worldwide. Were she here, she would wring her hands and look at me with her innocent blue eyes, smile a deprecating smile and shrug her shoulders: "Darling, they didn't ask my opinion." And that would send me through the roof, because I always took that as a big copout.

Now, I see things differently.

Since the arrival of the big C I've learned to back off and tune out, or rather, to put firm controls on what I expose myself to, what I am willing to get upset for. I have stopped being a news junkie; I've given away leading the Jewish-Muslim Dialogue in shule. I watch comedies, not action – war movies are definite no nos.

It's not that I think a good laugh will miraculously cure me, or that by shutting out the nastiness of this world it will suddenly disappear. No. I have realised that if I don't get well, I will definitely not be able to do anything about what's wrong with the world, even if they do ask me (which the odds are they won't).

However, if I make sure that I do get well, then I will have the health and energy to work for Tikkun Olam (repairing the world) and change – even unasked – an infinitessimal amount of the darkness that threatens to engulf us.

If that means tuning out for a while, then I think it's worth it. Don't you agree? I think Mom would.

Go figure

Just in case you got worried about my mental state after reading the previous blog, let me assure you that today is definitely another day.

Having woken up bright eyed and bushy tailed after just 5 hours of sleep, two hours later I am still chirpy and full of whim and vigour and haven't felt the need for an antinausea pill yet. Go figure.

I know this won't last all day, but hey, every minute of well being counts and I am really happy that today is another day!

Here's the view of Blackwattle Bay from Bicentennial Park, which is about a 15 minute walk from the back of the house through a series of city parks, with the Anzac Bridge and the Sydney Centre Point in the background.

Three down....

The human body is an amazing piece of machinery. It can get used to almost anything. Well, maybe not. At least, not this chemotherapy.

In the beginning I thought one could get into a routine of one week feeling sick, then a week recovering and a week of feeling well. And I thought I could live with that. Forget it. It doesn't work that way.

The day of this last atrocity was a really hot one. The hottest this so called summer, which has been a great disappointment so far. We had to put the gas heater on a few days ago, it was so cold. But, as usual, I digress.

To make the inevitable as comfortable as possible, I decked myself out in my African kaftan best and strode off to the hospital with great confidence. The first appointment was with Angela, the counsellor, who assured me that the recurring 'blue day' the day before the chemo is absolutely normal and everyone goes through it. 'It's the fear and anticipation of being ill', she explained.

Next, I was good, I remembered to have the blood test and to take the antinauseant on time. The Professor said my blood looked good. He wasn't happy about having an operation between the chemo and radiation, so that scenario has been shot down two to one. I must say, I don't fancy it much myself, but then I am no expert, so I guess I won't count that vote until I see the plastic and reconstruction surgeon in January.

I had to wait two hours to see the Prof, so the chemo was started just about the time when June came to pick me up, which is why she found me in good spirits and could take the picture above. Two hours later, the picture would have been quite different. My eyes felt as if they were going to bulge out of their sockets, it was difficult to stand up straight and I could barely waddle to a cab in the oppressive heat. Thank God I had the foresight to wear a loose garment! Thank you June for coming down from Queensland to look after me!

Things were barely tolerable the first and second day, but June was there to take the slack and fuss over me, and I could even entertain some visitors. But Sunday and Monday are a blurr of sleeping, peeing and drinking gallons of water. One of the most hideous aspects of the whole thing is the focus on body function, and a heightened sense of smell thereof, which lasts over a week for me.

Today is actually Wednesday. I started this blog yesterday, but was too tired to finish. Today was a bad day and the weather didn't help at all. It's the cold southerlies that make me sick with my 'episodes' and this morning I had a full blown one right in my doctor's office, while I was waiting to get some documentation for the sickness benefit. It was just too much. It's bad enough to feel sick all the time and have no energy at all, but to have the 'episode' monster on top if it, is unbearable. I fell apart right there and then and the good doctor revived me with a very good cup of tea.

I guess it was lucky it happened when the doctor could observe the weirdness of these 'episodes', which I can only describe as a reverse fever. The strangest part of it is that when it's over, I snap back into my normal energy level almost immediately, as if nothing has ever happened.

Well, this time it was not as fast, but as I said before, the human body is amazing. As the day wore on my energy level slowly returned. I didn't have to take as many antinausea pills, and it's after midnight now and I have the energy to finish this blog. I am keeping fingers and toes crossed that tomorrow will be a better day.

By the way, let me wish all my friends, as well as those I don't know who read this blog, Happy Channukah and Merry Christmas.

Lamb to slaughter

One would think one would get used to the rhythm of chemotherapy and just get on with it. Well, that's what I thought too. My diary is neatly pencilled when I can expect to be sick, medium and well. I arrange my affairs so the important things fall on the 'good week'. So, why can't I get used to the 'day before'?

As per usual, today I am tying up loose ends, cleaning the house, the car, etc., doing the ironing. In the midst of all this activity, my mind suddenly went blank and I again felt like I was saying good bye to my world. The feeling of 'what happens after', that I had at the first and second chemo is back. Why? Surely I can see that I was fine before and will be fine again? A wave of weeping overtakes me. Very strange.

Maybe it's this cold winter weather that we have been having, that's why I feel so blue? You wouldn't think it's almost summer, I had to put the heater on this morning because it was so cold.

Getting back to the 'problem'. I am not even going to be alone this time. My friend June C. came down from Queensland and will be here to hold my hand until next Tuesday morning. So, why am I so blue?

This is very strange. I have an appointment with the counsellor tomorrow morning, before I see the Prof, before they pump me full of poison, so I shall have to mull that over with her.

The reality is that I've put on about 3kg since the chemos began. I don't know whether that's because of the steroids, or because I am not doing so much exercise anymore. Well, I don't think one can lose much weight doing Tai Chi.

Anyway, I did call a local gym, but they don't have what I need, so I shall just continue to check out some others. I just think that exercise will make things easier, but I know I don't have the discipline to do it by myself.

Radiation in mind

One of the really good things about modern medical practice is the empowerment of the patient to make decisions. By the same token, it's also the hardest thing for the patient. After all, most of us are not medically trained and with the big reaper in sight, who has the fortitude to do the necessary research to make an 'informed' decision. Not me!

So, the best one can hope for is to trust the doctor and make the 'right' gut decision. In either case, the doctor is off the hook, because it is the patient who made the final decision. At least, that's how the cynic in me sees the situation right now.

Today I went to see the radiation oncologist, Dr. S.P., who confirmed that in some instances the breast can get enlarged and more heavy after radiation. But, and this is the big but, this is not always the case. And, nobody can predict what my situation would be.

One interesting and useful information she did impart was that some surgeons, apparently, prefer to do the cosmetic surgery after both the chemo and radiation therapies have been concluded, even though it's a more difficult procedure at that stage.

The bottom line is that I will have to have six weeks of daily radiation therapy after the chemo.

For now, I have a breathing space to decide about the breast reduction operation until I see the plastic and reconstruction surgeon in early January.

Well, that's a blessing. I can again take things one day at a time, regain my emotional balance and enjoy Channukah and the New Year.

Family history

Today was a difficult and emotional day for many reasons. As I said before, today is the 50th anniversary of our escape from Hungary, the day our rickety boat froze in the icy waters of the shallow lake – Lake Fertő – that separates northwestern Hungary from Austria. Today the area is a holiday resort, but back then it was the gateway from Communist Hungary to the West.

Aside from this emotional baggage, I had an early morning meeting with a cancer counsellor at the hospital, regarding my concerns about the breast reduction surgery. Angela turned out to be a very, very great addition to my team. She is caring, astute and really good at her job. Just in the first hour I had a couple of insights as to why this breast reduction business is so traumatic for me.

Naturally, baggage from the past came up as well, and perhaps one should not be surprised that when my brother called later in the day and started screaming down the line at me, I just told him to call me back when he has calmed down. It felt good. But it was also bad, because we have not had a cross word in a number of years and it came as a total shock to me.

Tonight, my cousins in Melbourne had a celebration to reenact, with their children, our journey across the lake a half century ago. I am sure they had a good time, but for me it seemed a little overboard and I am not really sorry that I could not go.

Nevertheless, the day was spent in reflection, realising that 50 years is a very long time and I've come a very long way from the brooding 12 year old girl in the refugee camp you see in this picture. The girl with me in the skirt is Ilona, who was a German refugee in the camp opposite ours, whose family befriended me after all my cousins had scattered across the globe. They taught me all the German I know to this day.

Transitions

The transition from feeling very ill to feeling very well can be surprisingly frustrating. I was feeling quite well two days ago and arranged to meet someone yesterday about doing odd jobs while I am under treatment.

I got up early in the morning, did my morning exercise, had breakfast, put on the wig and makeup. I looked gorgeous and felt full of confidence. Suddenly there was the metallic taste in the mouth again and the gurgle at the pit of my stomach. I had to lie down and take the trusted Maxolon (antinauseant). Panic, there's only three left. Organise new prescription, cancel meeting, fall back to bed ungracefully.

As you know by now, there's almost always a silver lining to my clouds, and today this appeared in the form of a call from Karel's cleaner. He asked if he could come over to see the place, and when he saw, he asked if he could clean it now, pronto, immediately.

Two hours later, I was reclining in the most delightfully clean smelling house, with not a care in the world, waiting for the fatigue to lift. By the time evening fell, and Sue came over for dinner, I was quite well enough to reflect on the fact that it was exactly 50 years ago last night that we crossed the border from Hungary to Austria and became refugees.

Lesson in humility

You may have noticed that on the side of this blog there are an increasing number of links to AIDS agencies in Africa. There's a good reason for that. My friend Lucy Kiekebusch-Steinitz, the angel who organised the 5 continent prayer circle on my behalf at the beginning of this journey, is one of the leading lights in trying help people devastated by this scourge. About 9 years ago she was founding director of the Catholic Aids Action in Namibia, but recently has expanded her activities to the other agencies whose links you see here.

I first met Lucy, 'a nice Jewish girl' from New York, in Washington DC in the early 1980s at the begninning of another important journey in my life - the spiritual one that led me back to my Jewish roots. She, and her husband Bernd were crying with me at my mother's funeral in 1987, and she danced at my second wedding in 1991. Over the years, I have had the priviledge of being on Lucy's mailing list of friends to whom she reports about the ups and downs of her African experience with unwavering clarity of vision and humanity.

Lucy deals with people whose troubles I can't even begin to comprehend: parents of young families who know they never will see their children grow up; children, barely entering their teens, parenting 4-5 younger siblings; and grandparents, whose backs have already been bent by years of carrying clean water from too far, being called upon to parent the children of their children who died of AIDS.

This morning I received a short email from Lucy: "I shared your story with the SAVING REMNANT students who went with us this weekend to Swakopmund. I think four or five of them read it. They said, you opened up a whole new world for them; an experience they knew nothing about." (see link about SAVING REMNANT)

I am absolutely awed that these young people, who continue their education while facing overwhelming odds in their private lives, have the generosity of spirit to open up their hearts and minds to learn about other people's troubles. A good lesson in humility for when I think that life is just a bit too hard. Thanks all of you. Lucy sent me a picture of the group, so here they are, and I wish for them much success in the future:

(left to right)
Simon Hatutale (Social Work, UNAM)
Mirjam Hasheela (Accounting, UNAM)
Rudolf Kushakosha (Geology, UNAM)
Jason Hatutale (Pre-med, UNAM)
Kenneth Kasata (Accounting, UNAM)
Lydia Hasheela (Communications, Polytechnic)
"Uncle Bernd"
"Auntie Lucy"
Lucas Mahoni (Engineering, Polytechnic)

Future file

When things are really bad, I usually tell myself: 'this too shall pass'. Another mantra of mine is: 'there is no fear'. These little homilies can sometimes make the difference between overcoming or succumbing to the trials of life. At least for me.

So, the 'emotional fog' has thankfully passed. I only needed a couple of anti-nausea pills today, and for tomorrow I plan to to go to the Fair Trading Christmas Fair in Manly by ferry (and hopefully will not get seasick).

This is a Christmas bazaar type of thing, featuring products from developing countries, for which the producers are properly and fairly compensated (read not exploited by multinational corporations). I saw an interview with the Mayor of Manly, whose aim is to make all the businesses in his jurisdiction Fair Trading.

As I wrote these paragraphs, it occured to me that I don't really know what Fair Trade is, so I looked it up:

“Fair Trade is a trading partnership, based on dialogue, transparency and respect, which seeks greater equity in international trade. It contributes to sustainable development by offering better trading conditions to, and securing the rights of, marginalized producers and workers - especially in the South. Fair Trade organizations (backed by consumers) are engaged actively in supporting producers, awareness raising and in campaigning for changes in the rules and practice of conventional international trade."

Now that we are clear on that one, let me tell you what else happened today.

After the second chemo I was pretty slack about doing my exercises and developed strange aches and pains in my right arm and breast. Last night I started doing my Qui Gong Shibashi exercises, repeated them today and also went for a walk with a friend, and I have to admit that I feel much better already. So, my diagnosis of lack of exercise was correct and I am now more motivated than ever to never stop. I've switched from the fear of obesity to the lure of feeling well. Perhaps that will be a more enduring motivation.

Another positive thing that happened today has to do with my future plans. As many of you know, before the big C struck I was toying with the idea of doing a PhD. Not long ago, I received notification that one of the universities here in Sydney is offering a PhD scholarhip in the very field I was thinking about - multiculturalism and social inclusion.

My highschool friend Rosemary P. is a noted academic in that area, and she took time out tonight to Skype with me to discuss the project. Thank you Rosemary! It was very enlightening, enlivening and invigorating. As a result, the burning issue right now is to see just how well my energy returns to allow me to prepare for my interview which will be a week from today.

So please everyone, forget for one moment the C word and send me vibes for energy and success in my application. For sure that will have curative effects as well.