Archive | March, 2012

Charity Begins at Home

30 Mar

This is the season when our junk snail-mail is swollen by charities silently seeking our shekels. Some of them are familiar sounding names – although I’d be hard pushed to write a few lines about them, let alone who actually benefits. And then the accountant in me arouses the question: “What percentage of their income goes on expenses?”

But this year I look at the bundle in a different light – especially the one from The Cancer Society. For some reason I have a greater feeling for philanthropy. Although many appeals have been sent anonymously, there are one or two with hand-written comments about how generous I’ve been in previous years. Except that those years seem to be in a different world and in today’s world of rising prices my contribution seems meager indeed.

So what am I to do? I read through The Cancer Society’s small print and check out the boxes. The number “18” – the Hebrew acronym for “Life” – still holds its magic. Except 18 is no longer there – a sign of the times how “Life” has aged for inflation – and the amounts multiplied. Then there are boxes for your choice as to where the money should be spent: research, child care, literature, etc, etc.

My thoughts turn to who actually sends out these notices: well meaning volunteers, underpaid workers or students who get paid nothing other than a percentage of what they bring in? I think no more. I get my pen out and sign away an amount for each and all. I’m happy.

Then the phone rings – one of those unsolicited phone calls – a different charity canvassing for my contribution. I tell them I’ve just signed away this season’s allocation but ask them to put me down for their New Year campaign.

Always look on the bright side…

 

 

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If it was only as easy as ABC – Abraxane, Ben, Children…

27 Mar

The abdominal pains I’ve been suffering told me to go to hospital sooner rather than later. On Monday I was scheduled to start my new treatment – but Pam prevailed upon me to go on Sunday. This is how it panned out.

Tel Hashomer has an oncology doctor on call – saving sufferers the added discomfort of unnecessary queuing and quibbling. Call me “Ben” says the young man. You know you’re getting old not when the body lets you down but when the doctors don’t seem old enough to have finished school. I briefly tell him my case history – and smile to myself as he raises his eyebrows when I date my diagnosis as October 2010. He seems extremely competent and caring – but couldn’t confirm whether my pain was a direct cause of the illness or side effects of Tarceva. “At least you’ve done with Tarceva”, he says encouragingly, but can’t allay my concern. His best effort is to prescribe better pain killers – and give me the all-clear to start Abraxane.

Good that new beginnings fill me with optimism. But on what is it based? Do I have any idea of the side effects in the offing? When and where they’ll kick in? And I have to get the naïveté that everything will be better into some prospective. Not easy. Is it such a wonder drug or is it only so much wishful  thinking? What I am learning is that the my oncology department doesn’t seem to have too much first hand experience with pancreatic cancer patients on Abraxane – it’s certainly not in our Ministry of Health’s basket of medicines – so I might be on the cutting edge again. But we manage the administrative hurdles and I had the first treatment on Sunday. So far so good…

But now comes the crunch – the children. It seems that whatever age your children – the accuracy of their perception can surprise you. No hiding my pain and no hiding yet another change of treatment. Their concern moves me to tears and emphasizes yet again what a strain this illness is on the whole family. But this gives us all strength as well … so maybe things will be easier.

As usual, the family have rallied round. Sheila came up with the idea that the recent addition to my diet of “bread” may have been too much too soon. So I’ve cut back for the moment – and happily, the first couple of days have me almost back to my old self.

Spring

23 Mar

Did I miss something in my melancholy? They tell us to be aware of the Ides of March – but what exactly is the warning? As daylight became longer than the hours of darkness this week, we travelled up north to visit one of our daughters.

How the sunshine, open road and some sixties and seventies music can swing the mood. But what can one do with physical pain? Unfortunately, this week I’ve again had a terribly mixed bunch of bad feeling. Stomach aches – which moved my mind to places that I haven’t been to before. Except once – a couple of weeks ago. Thoughts that I can only share with Pam. Fortunately I was able to broach the subject with my ever-present Joanna – a daughter who seems wiser beyond her years. And capable of communication in conversations that I am not. But how comforting she always is to me.

So we motor up north, gob-smacked by the beauty of the greenery interspersed by outbursts of audacious spring-blooming trees. How can this not uplift your soul? By what about physical pain? My good friend Robert, the physician, counsels me not to be stubborn but simply to take some pain-killers. The other alternative is to check-in to Tel Hashomer hospital and let them try to get to the bottom of my latest problem. Only I fear that the pains are nothing new and my obstinacy demands respecting my week-long break from chemo and travelling north – to be perfectly pampered by Tal. I certainly know how to count my blessings.

Shortly after I was diagnosed, Robert suggested I build a pain scale of 1 to 10 and medicate myself accordingly. I’ve used the scale sparingly to convince myself that I’m always on the low end. But this week I succumbed – and started popping a few pills.

Did they help? It was certainly an up-and-down week; pain peppered with magical moments, friends and a few phone calls – from Sidelle especially – to help as well. And even share an entertaining evening in Jerusalem with her. And a niece nice enough to place a plea in our Western Wall.

This week, as ever, I’m so aware how supportive my family are in this on-going battle. I hope that spring can put a spring back in my heel and spirits. I might even get round to some spring cleaning….

Abra(xane) Cadabra

17 Mar

The thought of changing treatments conjures up mixed emotions. I haven’t come across too many people who deal well with changes for the unknown – and if I have, I’ve forgotten the ground rules. So trepidation will be there but Tarceva, with its unpleasant side effects, won’t. Abraxene in – but will it work its magic?

We all know Abracadabra is an incantation used as a magic word in magic tricks. Historically it was believed to have healing powers when inscribed on an amulet. The word is thought to have come from “אברא” (avra) meaning “I have created” and “כאדאברה” (k’adabra) meaning “as I speak”.

Abraxane was first sold in the United States by Abraxis Bioscience in 2005 for breast cancer. It’s a protein-bound paclitaxel, a mitotic inhibitor drug used primarily in the treatment of breast cancer. Abraxane is a first in its class of drugs using nanoparticle albumin bound (nab) technology platform. In June 2010, positive results were published from a phase III trial in first-line non-small-cell lung cancer (NSCLC). Some pancreatic patients have been on it for a while now, and are doing well.

So why the change? We’ve always tried to “keep ahead of the game”. Out- guess the cancer (and maybe the oncologists?). Why the trepidation? Who knows what will happen. They say one of Abraxane’s side effects is hair loss – and I can’t say that fills me with great joy. The truth is that while on Gemcitobene and Tarceva something has changed, both physically and psychologically – and I can’t put my finger on it.

Hopefully writing about abraxane, then trying it, will do the trick.

Or should I just say Abra(xane) Cadabra, and hope for the best?

The Ketogenic Diet – and “Thank Yous”

12 Mar

Firstly, let me say thank you to Libby, from Austria, who pointed out that the web page for the link I’ve been giving to the ketogenic diet is no longer available. I referred to the link a couple of times in a footnote. I like my footnotes. Ever since I saw Josef Kedar’s superb movie of the same name, “Footnotes”, something has changed. If previously I had a tendency to pass them over – especially in technical or academic articles – today I’m more aware. I’m rambling – but that could be the result of the change in treatment over the last few weeks.

As I’ve mentioned I’ve done with 5-F-U (or vice versa). For the last few weeks I’ve been on a weekly infusion of Gemcitobene and one pill of Tarceva a day. The side effects have been debilitating. Which brings me to my second thank you. I literally “cried off” my Sunday game of golf. Karl was again my saviour. Doubled over in pain, and trying hard to hide my tears, he helped as only a true friend can. There are no words of thanks for good deeds.  This illness has certainly given me the perspective of being able to look around and see the best out of so many situations.

So why is the world in such a mess – especially in our corner of it? It’s easy to say that “it’s complicated” or “there’re always two sides to a story”. But somehow I seem to see things in much sharper focus. Should I share these thoughts with you – or keep my blog as I intended it – to help other cancer sufferers, pancreatic cancer patients in particular? An open question – perhaps you’ll oblige me with some open answers.

In the meantime, I’ll stick to the ketogenic diet. Here’s Libby’s link: 

http://lchf.de/wp-content/uploads/2011/06/ketogene_ernaehrung_bei_krebs.pdf . It’s great if you speak German – a tad difficult if you don’t. Skip down to page 19 to find lots of links to interesting recipes – but again in German.

More helpful for my English-only readers is a link forwarded to me by my indefatigable sister-in-law-researcher, Sheila, who has come up with a site that gives a clear (if not new) insight to the diet:

http://www.drbriffa.com/2011/11/29/low-carbohydrate-diets-look-good-for-the-prevention-and-treatment-of-cancer . Sheila, thanks for your continuing support and research.

Why the ketogenic diet? It might just be that my bad side-effects to Tarceva were limited by my diet. I’ll never know. I was warned that Tarceva would be a waste of time. That’s another thing I won’t know. A two-week treatment break and a chance to break new ground with Abraxane is next on the agenda. Suddenly I’ve got the urge to keep the fight going.

Pam’s Perspective 2 [26]

10 Mar

It’s a seductive affair, writing a blog.  You sit, the keys at your fingertips, and pour out your heart in private. You can cry, and no-one notices.  You can scream, and no-one can hear.  You can say all the things that are bottled up in your throat, and no-one looks shocked, or uneasy.  And then you hit a few buttons and click a couple of links and whoosh – all your innermost feelings are ‘out there,’ for all to share.  Scary.

One of the most unexpected side-effects of Martin’s illness has been the resurgent ache that I have for my own parents.  You would think at this stage of the game I wouldn’t want to reach for the phone to call my mommy; thank the powers-that-be I have been a mommy myself for a beautifully long time.  It’s over a quarter of a century that I haven’t had a dad – how weird is it now to long for his hug, for my mother’s calm coping skills, for their advice and love.  But miss them I do – more and more each day, it seems.  Not for their help with the shopping, or the cooking, or the laundry; I miss just being able to talk.  There are certain things – the thoughts that hit as I drive home from work, the conversations that Martin and I have in the small hours of the morning, when we lie holding hands in bed, crying softly and chatting – that you can’t really share with anyone except a mom and dad.  It’s not fair to burden the kids – and I put so much on my brothers and sisters-in-law as it is – there have to be some limits, somewhere.  So I long for my parents, with that twisting, raw ache.

And then I stop myself.  I think of my special daughters – who walk in from their own busy lives, wash their hands, and start cooking for us; and my brothers and sisters-in-law who are always, always there for us – God! How lucky we are! – and my family and friends who have kept up an unending, embracing blanket of support with calls, and practical help, and visits and more, all through this long, long time (which we hope will stretch on for the longest time yet) … and I have to count myself blessed.  And I think how lucky I am that I can still hold my husband in the quiet hours of the night, and we can discuss all manner of things together, and that in the warm sunlight of morning, life still can look good.

As I type my heroic husband is cleaning up our garden for Pesach, pruning and sweeping and planting new buds to brighten up our Chag.  He popped a Tarceva in mitten drin, as my mom used to say, and we pray that it keeps him stable and well.  And he pops in every ten minutes to check on West Ham – since he’s been ill I’ve taken to caring about this maddening soccer team too … just let them get back into the Premier League, soon.

And as Pesach rolls round I think just maybe I might clean this year, as I do each spring – although I thought I’d never care about that again.  And I think how weird to be so glad that I want to scrub behind the washing machine … and I think how strange life is bichlal, and I get up from this surrogate life – the computer – and put on the kettle to make my husband a cup of tea. 

Lechaim – and happy, happy cleaning to us all.

___________________________

[26] This is the second time Pam has written her perspective. The first, seemingly ages ago, was written on 24th November, 2011.

Ketogenic “Bread”

5 Mar

Our whirl-wind tour of Canada and the long trip home may have taken its toll. The combination of return flight and a chemo treatment early last week didn’t work well for me. But as I’ve often said, one has to believe that downturns will end swinging upwards again. I had another treatment today and I’ve been sleeping on and off ever since – but amazingly enough – even at this late hour I feel up to a quick “post”.

I’m proud to present a recipe for Paleo Bread, for which I will be eternally grateful to Janice and Felicity:

1 ½ cups blanched almond flour

2 tablespoons coconut flour

¼ cup golden flaxseed meal

¼ teaspoon celtic sea salt

1 ½ teaspoons baking soda

5 eggs

¼ cup coconut oil

1 tablespoon apple cider vinegar

Place almond flour, coconut flour, flax, salt and baking soda in a food processor

Mix ingredients together

Mix in eggs, oil and vinegar

Pour batter into a greased 7.5″ x 3.5″ loaf pan

Bake at 350°F/180°C for 30 minutes

Cool and serve

Actually, I couldn’t wait for the “cool” bit. I cut my first slice and lashed on butter – hardly waiting to see it melt. Closed my eyes, took my first bite, and thought I’d gone to Heaven…

Is that what over a year on the ketogenic diet [1] does for you? Fooled me into forgetting how much I took food for granted?

Who knows why I’ve stuck so religiously to the diet for so long? Is it because of family support? Fear of upsetting a thus-far “winning” formula? Belief in an as yet undocumented theory? As I’ve said before, there’s been no extensive research on the diet – but hopefully even that might change. I’d be specially interested to see the effect on weight changes.

I can tell you the thought that ran through my brain as I was biting my “bread”. I’m in the middle of reading Israel Meir Lau’s book “Out of the Depths” – his experience through and after the Holocaust. Nothing can compare with Lau’s experience but my small abstinence – out of choice – of part of my diet, put things into proportion.


[1] Some people say the Ketogenic diet sounds like the Atkins diet – no carbs, no sugar and no fruit. If you can cut out real bread, cake, biscuits, pasta, potatoes, rice, sugar and fruit (berries are OK) you’re on your way.  For more about the diet go to:  www.frauenklinik.uni-wuerzburg.de_forschung_ketogenic_en.pdf