Emotional fog

The last two days were the hardest of this journey to date. My flippancy and habit of 'putting on a good face' have finally come to roost.

It all began on Tuesday morning with a beauty class at the Sydney Cancer Clinic. About 15 women of all ages, 20s-70s, sat around the room in front of mirrors and loads of free makeup. Finally, I learned how to put on eyeshadow (light on eye ball, dark in reverse C in folds) and mascara (zig-zag movement, no feathering) properly. The 'students' in the room turned from pasty invalids to vibrant, beautiful women. As for myself, I wore my wig, but it was a hot day, so it landed on the beauty table and my balding, shorn head became the model for the hats and scarves demonstration. It was great fun.

When I returned home, I started a blog about the great experience, but Karin H. arrived to drive me to the surgeon regarding some discomfort in my breast. It was a long drive and we had to wait quite a while, since I was a 'squeeze in' - 'see you when I can', appointment. No matter, Dr A.S. was his gorgeous, jovial self. The breast was fine, he said, the problem is the size. "You really need to think seriously about breast reduction surgery before you have the radiation therapy'- he advised.

What?! He must be kidding!! I've just had a lumpectomy and was gloating about the fact that my ample bosom was still ample.

I became flippant, but he was very serious. He said the problem I am having now has to do with the size of the breast as it undergoes post-operative changes. He said the radiation therapy could make the breast tissue harder, larger and heavier, exacerbating my current problems. With smaller breasts the changes would be more manageable. As I cracked some more jokes Dr A.S. just smiled and said farewell with: "Well, in two years I will remind you of this conversation we had today."

On the way home, Karin told me about a surgeon who could do the job, but I just thought the whole idea was a hoot. I mean, consider the history of these pendulous appendages.

I think I had to start covering up my sprouting breasts when I was 6 years old! They were the sport of spotty faced boys, who chased me up the steps of the Basilica to try to 'get a feel'. They were my calling card - the bane of my existence as later generation of guys gave chase to do the same. No man looked me in the eye - their goggles were firmly focused on those boobs: "Are these real" - they wanted to know. Poor buggers, hardly any of them got a feel and I felt quite powerful deciding who would be the odd lucky duck allowed to get close enough to wallow. Maybe that's why I have had such bad luck with men? Too much pushing and shoving, and I managed to let the wrong ones get close.

So, it was a joke that now, when I look healthy as a horse, yet am fighting cancer, now, when nobody tries to crash my personal space (let alone boob space), now I have to think about getting the boobs in line and shape them to more modest proportions. It was an absurd idea!

I called a few friends for a laugh and settled down to write a blisteringly funny blog. Karin took some pictures of my beautifully made up face and I imported them to use. I looked at the pictures and burst into tears – and I cried and cried and cried.

The face in the pictures was not me. I never wear makeup except at night when I go out. To me, the made up face was the 'sick me' and the thought of having to have another surgery to further change my body image just became too much. It was overwhelming. I was drowning in the enormity of it all.

So, that was the start. My saving grace is that during my long journey through life in four countries on three continents, I have accumulated an amazing collection of friends, who are now helping me through this horrendous journey. So, I started calling. First Suky, my English sister in London, whom I've known since the age of 14, my son Tunde in Ft Lauderdale, Florida, and then a few others, more closer to home.

At night I couldn't sleep. To distract myself I wrote the story of our escape from Hungary 50 years ago for an anthohlogy of memories my cousin Gabor is coordinating to publish for the family commemoration in December. Well, that didn't help matters, so when the tears wouldn't stop, I searched for my stash of Valium that I keep (but never take) in case my 'episodes' get too scary, and actually took some and went to sleep.

By the next morning I was completely fed up with myself, but couldn't get a grip, so I researched the surgeon Karin recommended. By the end of that little exercise, I was so impressed with Dr. D.P. that by day's end I organised an appointment to consult with him in early January. A friend also offered to help research the effects of the radiation therapy that's supposed to cause the proble, and I contacted the cancer counselling service and am now waiting to be contacted by a cancer cousellor. I also talked with a woman I greatly respect about the cathartic dreams I have been having while all this was going on - dreams of a spiritual nature.

So, here I sit two mornings after it all began, absolutely exhausted, but back on top of things again, cognisant of what's been happening to me in the last two days and being very grateful to all those who helped me through these dark hours.

So, what's the deal now, you may ask. What are you going to do? Well, it's like this:

When Dr A.S. says something, there is always a reason, so I have to seriously consider his advice. Before my appointment with the plastic and resonstruction surgeon I have apppointments with the oncologist and radiation therapists anyway, so I can discuss the pros and cons with them well before. As I said, I realised that now is the time to get some couselling to deal with the real issues, like self image, etc, because it's getting too heavy and I don't want to loose any of my friends, even though they are all there for me and I try not to overburden any one person.

In the meantime, I am getting my balance back and today I have started the day early and will go to my acupuncturist after I finish this missive. I am going to get back to doing my Qui Gong Shibashi (a type of Tai chi exercises) that I haven't done for a week, and I'll start seriously watching what I eat.

I've been pretty indulgent of myself in the food department lately and am beginning to put on weight. Someone, who has taken steroids in the past for medical reasons, told me that this is from the steroids and she assured me that my weight will return to normal after the chemo, but I don't want to wait. We are having an obesity epidemic in Australia and since I've moved closer to the city (was it only 5 months ago), I am horrified by the large number of really obese people I see every day. I don't want to end up like that. Talk about worrying over body image!!! That should be the least of my worries right now! Ah well...........

A moody day

There's nothing different to report from yesterday, except that this picture shows you exactly what kind of day it is outside.










And this is exactly how I've been feeling for the past few days - like a bird on the high wire, wondering if I can hang on.

Two down....

Today is not a good day. My head hurts, my right foot is sore and I am plagued by bouts of nausea and headache. And to add insult to injury, when I put my weary head on the pillow, the stubble of my remaining hair scrapes sharply against my scalp lik a mini-razor. My hormones are also plalying tricks, so I am hot and cold, bleary eyed and miserable. Oy veh!

This is the third day after the second chemo. The first two days were surprisingly tolerable, to be honest. I drank copious amounts of water, Gatorade and avoided coffee. Miracle of miracles, I didn't have the 'gravity compress' (my new word for the crushing fatigue I experienced after the first chemo), and I attribute that to the Gatorade, because it replenished the electrolytes lost with the constant drinking and eventual passing of the water.

For those who don't know, last Thursday was Thanksgiving in the US. The national holiday to thank the Indians for saving the Pilgrims from starvation. (Which was of course repaid by bloody conquest - but I digress)

In any case, Thanksgiving is a big event in the Ban family as well, with every member traditionally trooping down to the Florida Keys to the paternal stronghold of my brother Stephan on Key Marathon.

Nowadays the big lunch is held at my oldest niece Judy's house and then the festivities continue at Bobby's down the road. Three generations of Bans all in one place. And of course this includes my Tunde and this year his current partner Zabrina (of Dr Booboo fame) and family as well.

So, not to belabour the point much longer, I was feeling well enough to talk to everyone - almost all the children and spouses as well. It took hours and I was giving my own Thanks here that I had the strength to do it.

Maybe today is payback for all that joy of talking to the family. Maybe when you are having chemo you are not supposed to have fun and be happy! I don't see why not, though. Just by thinking about the joy of it I feel much better than when I started the litany of today's miseries.

Best to stop right here, go and have a relaxing nap, and the aches and pains will disappear - God willing!

Mo' Hair

I don’t want to belabour the point, but losing one’s hair is serious business. For one thing, it hurts. Really. When I dried my hair yesterday morning, instead of feeling its usual silky self, it felt more like a stubble, as if it was already shorn by a razor. And my scalp felt like it had been scraped by one as well.

Besides that, there was hair everywhere – on my pillow, in the sink, on the bathroom floor. I was reminded of the homestay student with the hair problem, whose long black hair I was cleaning off the bathrooom floor weeks after she left Sydney. I grew to hate her hair, as I am learning to hate mine now.

The worst of it this time was that I had no time to clean, because it was Tunde’s last day and I had to pick up the wig before we left for the airport. So, you can imagine my relief when the woman in the wig shop insisted on shaving my head as well. Phew, that should take care of everything, I thought with relief.

Don’t you believe it. The stubble is short, for sure, but there are just as many hairs to fall out as before, so it's just harder to see now and almost impossible to remove. And the stubble feels like a layer of carpet that rides up and down against the scarf or wig (shown here on the left). So, now I can hardly wait for all the hair to fall out and be really bald. I guess this is a twisted version of 'things are always greener on the other side'!

Luckily, I don't have time to dwell on any of this after I post this blog, because the next chemo fog is looming ahead this coming Thursday. Again, I am in cleaning mode, trying to get everything ready for when I can't do anything. The difference this time is that I am not scared. I am anxious about how it will go, but not scared. I guess that's progress.

On the bright side, now that I've been through one chemo session, I have a fair idea of what to expect (although I am told that it's different for everyone, every time) and I can plan ahead, and I have already organised who will be with me for the first couple of days right up to February. More importantly, I am filling my calendar with great things to do for when I know I will have energy. That way it all seems bearable.

The new look

The first day of life with a covered head went well. In the morning I took some of the things Hacer gave me and combined it with my own style, and I think the result was quite dramatic and unusual. In the afternoon Sue C. and I went to the Glebe Market, one of the weekly markets close to my house, and I bought some more scarves and other things, as if I didn't have enough at home.

One of the most amazing pieces was a huge, red and white Kenya cloth. The guy who sold it to me turned out to be one of my listeners when I was directing the Swahili program at the Voice of America! What a small world! Actually, I've also met a couple of Ethiopians who were also our listeners. Pretty amazing stuff.
In any case, here is my first attempt at emulating the creativity of my Nigerian sister-in-law, who always wore dramatic head scarf creations.

I've decided to keep a record of the more successful scarf art I come up with, so in the future, if you are interested, just check the link 'Liz's scarf creations' on the side panel.

Wigs and things

I hate surprises. I should qualify that. I hate sudden, negative change and so I learned that sometimes it is best to prepare for the worst. That way, things never seem as bad as I had imagined them to be.

This has been my strategy with this cancer thing from the beginning. Writing this blog forces me to remember that some of my friends reading it are having far more serious health problems than I, and also, that several have successfully overcome breast cancer. If they could put up with this awful, overwhelming experience, then so can I.

I must admit that my positive outlook got a big boost this week with the arrivel of my son Tunde, who lives in the US, and who wasn’t going to come to Australia this year because of his work commitments. It was supposed to be my turn to visit him in his new home in Fort Lauderdale.

Well, it has been a marvellous week. My mother has always told me that when children grow up, the parent-child relationship has to change to one of parent-friend, and I have to admit that when she died, I lost my best friend in many ways. I think that on this visit Tunde and I have been making this shift as we discover how different we are as people, yet can accept and respect each other’s foibles.

Tunde has been a great help to me as I learned how to switch from the debilitating post-chemo fog and to assess my strength as I get back to living my normal life. When he arrived I was still only able to do a few things before fatigue overtook me. Today, I had a one hour walk in the morning, had a visitor at lunch time (more of that later) and then went filming racing pidgeons in the afternoon. Then I collapsed. Nevertheless, the difference between my energy level a week ago when Tunde arrived, and today is truly remarkable.

One of the negative changes Tunde is witnessing is my loss of hair. His pragmatism is impressive. His attitude is, we know it’s going to happen, so let’s get on with it and don’t fret about it. Three days ago I did go and get my hair cut short and the following day Tunde came with me and bought me a wig. Today we agreed that the hair is thinning so rapidly that it’s time to cover it, even though the wig will only be ready on Monday.

So, my habit of preparing for the worst has proven correct once more. It started in earnest about three days ago when I went on a scarf-buying spree. Since then, I have spent hours in front of the mirror designing and constructing interesting, but impractical scarf sculptures.

Having failed to stop my outlandish turban designs from falling off my head, I finally admitted to myself yesterday that I needed help. I called Hacer S, a member of our Jewish-Muslim dialogue, who wears the hijab.

Hacer arrived today lunchtime with a huge bag of goodies – scarves, bandanas, and pieces whose names I don’t know. We spent close to two hours creating masterpieces, including this 'Arab look with Tunde and the 'Cover Everything Look" you see here. There's more on the side link 'Scarf Carnival'.

Although my future creations will not be traditional anything, but more individualistic and complex, the session was great fun, and very educational. Thanks Hacer for your time and for your generous gift of scarves and associated accessories.

One thing I note with glee is that no matter how I do it, the scarves make me look younger. Maybe my glasses need adjustment, but I don't think so. What do you think?

Hair vanities

I am not a vain person. After all, I didn't do much to maintain the hour glass figure (36-24-36) I had at 20, because I thought it would last forever by genetic default. My wardrobe has always harboured an ecclectic collection of garments more devoted to comfort than fashion, and I wore little makeup, except when going out dancing at night. But when it came to my hair, that was a completely different matter.

I shall never forget the anguish I felt one morning when, after having spent 3 hours fixing up my hair the night before, a curl-free, straight mop greeted me in the mirror. It was lucky that my roommate, a photographer who learned to hate the craft as soon as she turned professional, took some pictures to preserve the memory. That was in 1973, when my hair was still naturally black and had a healthy sheen.

Today, both the hourglass figure and the natural black sheen are almost forgotten things of the past, but my preoccupation with my hair lingers.

Having sworn to grow old gracefully, with no artificial enhancements, I must confess to turning myself over to the good graces of my hairdresser's alchemy as soon as the gray streaks appeared when I was being wooed by a man a decade younger than myself. Can you blame me? Well, to cut a long story short, for the past 20 years I've spared no expense to keep my hair its 'natural' colour, no matter how empty the coffers.

So, now that I face the prospect of losing my hair completely during chemotherapy, I am getting preoccupied with what a bald me would look and feel like.

I have already signed up for a session with "Look Good, Feel Better," a free program offered to cancer victims by the Australian beauty industry (including free makeup and skin care products). The three hour session includes personalised tips for treating the skin, applying makeup and insight into the secret world of wigs, scarves and turbans.

Unfortunately, the session in my area is only given in late December, after my 3rd chemo session, by which time I will have already become bald. So, I have already collected a couple of gorgeous large scarves and sun hats, hoping that they will do the trick in the interim. And I am now weighing the question of whether it is better to wait for the hair to fall out naturally, or to be proactive and trust my rapidly growing locks to the hairdresser's razor.

Interestingly, the prospect of losing my hair also spurs me to take a look at my wardrobe and I notice that I am preoccupied with my total look - something that never bothered me much before. What a good excuse for hitting the shops to get a new wardrobe for the summer!

Out of the fog

OK guys, I am back. Positive, ebullient me! One of the main reasons for this turnaround is the preliminary results of the US elections and the fact that the Rebublican stranglehold on the House of Representatives has been broken. Halleluyah! You hear, yo right wing, conservative hypochrites! The day of reckoning is at hand! Phew! That feels good! Now maybe the pendulum will swing back and some sanity will return to US politics. Amen!

I first went to the US in 1967, with a jaundiced eye, objecting to the Vietnam War and generally espousing the anti US politics of the British left. Unfortunately for me, I also happened to be a stateless person with absolutely no legal or political rights or protection, apart from the flimsy UN Travel Document that was nothing more than a booklet to accommodate the numerous visas - transit and otherwise - that one needed to step one toe out of England, where I was a resident refugee alien. Wouldn't you know that I accidentallly overstayed my permitted absence from the Foggy Isle and got stuck in the last place I ever wanted to be - the US.

Well, this is all old hat, but I just wanted to mention that today, because now that I am wiser, I understand that basically the US system is a fine and amazing institution that has the inbuilt capacity to return from the extremes of politics to the centre. Truly.

The first time I saw this happen was in 1972, shortly after I got my citizenship, when the Watergate Trials were in full swing. Man, those senators were impressive. They knew and applied the law. Richard Nixon, who seemed invulnerable a few months earlier, got his comeuppance. I would never have believed it. So, miracles do and did happen and I am confident that the stage for finally breaking the Republican juggernaut has been set. As I said: Halleluyah!

Right! That's enough of that. The second reason for my ebullience is the fact that the chemo fog is lifting and I've had two quiet days when nothing really untoward happened. I wrestled with household chores, walked around the block and rested when the body called for a rest. How good is that?

Winter in Spring

Yesterday was a bad day. The weather conspired to make everything worse. It was raining. It was cold. I should have put on the heating, but it was too much effort, so I just put on layers of jumpers. Not that it helped much with what was going on inside my body, which was heavy like lead and vibrating like an off balance gyroscope. I do believe every cell in my body was fighting to get out of the way of the toxic chemo molecules.

What to do? Call the clinic! Easier said than done. At the sound of a kind human voice, the torrent of tears preclude intelligent discourse. "Come in and we'll take a look at you," the man cooed down the line. What a good idea.

Thanks to Paul R. and his trusted car, I got to the hospital in one piece and plopped on the bed, expecting to expire. Bp normal, temperature normal. The resident doctor is kind, compassionate, apologetic, perplexed. "It will pass soon and get better in a day or two." Paul returns and I feel strangely stupid at wasting everyone's time as I walk out under my own steam with strangely renewed strength.

Outside, a gust of cold, southwesterly arctic wind hits my face. Aha! Everything is suddenly clear. I had an 'episode' on top of the chemo. "No wonder," I think to myself and feel utterly relieved as comprehension dawns.

A quick explanation. For the past 20 years I've suffered from some kind of condition that has no name, but whose symptoms can range from mild foggyness of mind to devastatingly scary symptoms resembling a stroke or a heart attack. "You'll have a diesease named after you when you die," my US doctor told me, after assuring me that it's not in my mind, but some deficiency in my adrenals.

I believed him and, like an old shoe, the syndrome has become a distinguishing part of me. With the passing of the years, as more and more of my internal organs have been removed, the symptoms have eased, and nowadays I am only affected when there is a sudden atmospheric change and the southwesterly cold winds rush in. I am now the best weatherwane in the Southern Hemisphere!

My mother always told me that as you grow older, your chronic aches and pains become like old friends, and you get concerned only when something unusual turns up. Well, I guess in this case the Chemo is the new kid on the block and, like in the good old days, when I was still known as the "Hungarian Fire Cracker", when the Ban and Herczeg sides of my family's temper combined into righteous indignation, my body bristled under the combined onslaught of an 'episode' and the 'chemo fog'. Can't say I blame it.

One Down....

Despite the fact that I was born the day before the worst saturation allied bombing of Budapest during WWII, smack in the worst period of the Holocaust in Hungary, and the fact that my twin sister died in that bombing, I was always thankful for the historical period I was born in and to the parents who bore me. Like Forest Gump, during my long track through life across four countries and three continents, I have seen many momentous historical events and met some amazing people – especially in the arts, medical and scientific arenas.

I guess, this is a long, roundabout way of saying (not so unusual for me) that I have survived the first day of chemo pretty well, without nausea and vomiting, just lots of burps and incredible fatigue. Well, I can live with that. Thank you modern medicine. Thank you Royal Prince Alfred Hospital.

And thank you all those scientists and breast cancer victims, like my wonderful sister-in-law Zsuzsi Horner (Susan Ban) and friend Eva Tibor (Eva Thomas), who died at the young age of 49 and 52, 19 and 16 years ago respectively.

Today I am very conscious of that fact that it was their suffering and the cancer survivors’ dedication, grassroots organisational and global political savvy to stop these needless deaths, that spurred on scientists and politicians to mount the necessary funds and research that allowed me to survive this day relatively unscathed.

Having said all that, the day was no picnic, by any means, let me tell you! The incredible fatigue that descended the previous night was there in the morning, waiting to pounce full force as soon as I woke up, thank you very much. And it was worse lying down than sitting or walking around. As soon as I lay down, invisible forces pulled me further into the bed from below and pushed me deeper from above. The remedy: get up, Tai Chi, sit.

Besides the fatigue and how to deal with it, the rest of the day was devoted to establishing a routine to avoid stomach problems, and praying that the antinauseants work.

The recommendation was to drink 4 bottles of 600ml water and eat light foods, preferably liquid stuff. Some people advised to get 4 bottles of water, but I knew better and devised my own scheme. This morning, the 4 bottles of water seem much more sensible, so I’ve just emailed the order to Karel S. the man who steered me to screenwriting, and who will be a great film producer one day soon (www.ozzywood.com.au), and who is doing my grocery shopping today. God bless you Karel!

Back to the kitchen! So, I tried porridge for breakfast, but it lay like a ton of bricks, so I decided to make my mother’s caraway seed soup, which is a blessing for any kind of stomach ailment. (Roast a small handful of caraway seeds, make a roux with browned flour and oil, but you can do it without a roux as well, add 4 cups of water, and a tea spoon of soup mix you like, boil and mix in one raw egg until swirling white and cook for a couple of more minutes)

That did the trick, but couldn’t down too much, so I sipped it periodically throughout the day, interspersed with leftover roast vegies and zucchini kugle slice, ice cream and I made a fruit juice concoction with the fruit I had in the fridge – strawberries, apple, mango, kiwi fruit, etc. It tasted good, and I have one more glass for breakfast today. Here’s to hoping that this day will pass well too. L’haim, Skol, Down the Hatch!

Chemo Fog

The Chemo Fog. I first heard the phrase today in the waiting room from two women, who had very different experiences, but both of whom agreed that the Chemo Fog descends on everyone, even if you are not physically sick (read throwing up).

And they were not kidding. I guess my adrenal 'episodes', that have dogged me over the past 20 years were a kind of preparation for this, in that I learned Biofeedback and Quigong Tai Chi - both of which are proving useful in a big way. The biofeedback puts me in a kind of meditative trance, during which I can lower blood pressure (which is what I learned it for in the US), remove pain and generally calm the body, and the Tai Chi provides gentle exercise for the whole body, reduces stress and improves circulation.

Well, the fatigue from the chemo is much more severe than I have ever experienced. I feel like I am being pulled to the floor by invisible forces and my eyes are bulging out, while in the gut area I feel like a trussed chicken. And my hormones (or whatever is left of them) are raging, and I feel feverish. Strangely enough, when I get up off my duff and walk around the house, I feel much better. The women told me that too..................

So, the choices I have are quite limited: feel progressively worse lying in bed, or get up and do something. You guessed it. I got up and did my Tai Chi. Lo and behold, I felt quite normal - as long as I was doing it. A few seconds after I finished, CRASH, the fatigue descended double. But I did enjoy the respite enormously!

Now, lest you think that someone is paying me to say something nice about my treatment 'Team', let me just say that we have socialised medicine in Australia and the treatment I am getting at this particular cancer centre is for everyone-those with and those without. As far as I know, the 'My Journey" Kit I got in the hospital, that had too much information then, but now is very much appreciated, is organised through the Breast Cancer Network Australia (see link).

Breast cancer survivors seem to be a hardy bunch, and united worldwide to make sure that those coming after them have more information, more support than they did in their jouney. Of course, every system is only as good as the people involved in it, so I think it's important to acknowledge the people who treat you well, especially since I had some not so nice things to say about some at the beginning.

And to titillate those with a voyeuristic bent: what is a chemo lounge really like? The simple answer is, it's like a huge open office. There is a large nurses' station close to the door you enter. The area closest to this is reserved for new patients, so the nurses coming and going can keep an eye on them for reactions. The patients sit in a comfy blue grandfather chair that has a leg rest if you want one, and next to the chair is the chemo feed line. I guess there are 10-12 such chairs (but don't quote me). Further back from the stationg there are individual cubiles that have space for a bed. I didn't count how many, but at least another 10, I would say.

Today the place was a bedlam, because they were treating two day's worth of patients to free the staff up for a seminar tomorrow. Actually, bedlam is a negative word. I should say that the place was a hive of healthy activity. Many of us were waiting in the waiting room for quite a long time and every half hour someone would come along, explain what is going on and apologise for the inconvenience. That's real communication. You knew there was a problem, but you would still have your turn and be treated as well as if it was a normal day. Nobody would be turned away for lack of time.

The nurse attending me was Randolph the magician, who made the whole experience a delightful, feel good, chemistry lesson. He named and explained some side effects of every poison he was pouring into my body. First, I was given an antinausea pill, called Emend, one hour before this session. Now, he gave me a pink tablet, also against nausea and vomiting. Having attached the IV line, he started with a steroid, called dexamethasone, followed by the two chemo drugs, Adriamycin and Cyclophosphamide. Then, he left me alone with the IV and Isabelle Allende's novel "Zorro" to keep me company.

By the time Randolph came to disconnect the IV an hour and a half later, the Chemo fog has descended and Zorro's adventures looked a blurr. I had a metallic taste in the mouth, a roaring headache, a bloated stomach and my eyes were bulging out of their sockets. Randolph meticulously explained which symptom belonged to which drug, but hey, guess what, who cares. All I want to know right now is, will the antinausea drugs work tomorrow?