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Up and Down and.. . .

5 Sep

How many times have I said – and even written in the blog – that life is a turning circle. We never know when things are going well, how far we are from the top before life tips us over. Similarly, we never know when we’re approaching the bottom of the cycle, only for it to start going up.

Recently, and in the last week in particular, I’ve certainly been in a downward spin. It’s easy to explain why. I just couldn’t bring myself to post it as a blog. If I was on my blog jury, I would definitely still be “out”. Do my faithful, supportive readers have a “right” to know, should I have shared my thoughts when it mattered most, or simply put: “whose blog is it anyway”? Why am I looking at when I last wrote – why do I care how often I communicate like this?

This is the bottom line: my stomach issues have caused me too much pain. It’s cruel, this cancer. The physical deterioration leads the mind off to meander. And I’m not alone. My family immediately picks up the vibe and the discussions become dramatic. But my brother-in-law Keith, is always there as a medical miracle. “Give your stomach a complete rest”, he advises me. I’ve been on a liquid diet for the last five days; starting with clear chicken broth and water only. I’ve now worked my way up to include some soft pieces of the broth’s chicken and its overcooked vegetables. The Jewish penicillin seems to be waving its wand. And he had one other tip – the juice of sauerkraut!! Apparently, it’s full of pro-biotics.

I’m more than happy to report that today is a much better day. Notwithstanding that Keith also advised that I “take it easy” (my late father-in-law’s mantra), today is my daughter’s birthday. We’ve decided to travel north to celebrate together. “Doing” is part of my mantra. It’s what motivates me and is a reason that I feel driven to keep finding things to do. But my body is telling me through tiredness that I have to tone it down. Golf was the first casualty this week. Lethargy has leapt to the fore.

This is where friends and family come through. My golf buddies continually tell me they’re there for me and waiting. Yesterday, a true friend flew back to Israel from a family wedding and phones to see how I’m doing. And I know there’re others who really care.

I hope they realise how much I appreciate such support. The fight goes on.    

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How Long Do We Have on This Planet?

29 Aug

We don’t know.  How lucky we don’t know. What an absolute blessing we don’t know.

Which reminds me of an experiment our Rabbi (ex-Californian, now retired) used on his high school pupils. He asked the kids to raise their hands if they were told they could choose their life expectancy (limited to the age of 99). All, yes all, the kids put up their hands and said they’d be happy to be in control of their life-span.

Then he asked them how they thought knowing your life expectancy would affect day-to-day life. They discussed the problem of motivation, quality of life, living perhaps with disability and approaching their own self-imposed “shelf-life”. On a re-run of the original vote, the hands raised dropped to a hand-full.

I’ve come to the conclusion that dealing with this illness, with all its many facets, basically falls into two categories. The physical challenge and the psychological paranoia.  The first category is something I have to deal with – although hands-on help from the family and the seemingly unending drugs-for all-ailments (except cure) are certainly a great help. But the second category, unfortunately, spills over into my immediate family. At the moment, this is the real challenge.   

I think I wrote of a wish I shared with a cousin a while ago – to be at my daughters’ weddings. “But you were at their Bat-mitzvahs,” he retorted.  “So?” I said. The point was that life has the habit of us always wanting more.

How often, behind very closed doors, we, in the immediate family discuss the differences between what will happen to me and those who survive me. As the rabbi said, lucky that life doesn’t give us the definitive batting order. The discussions are emotionally exhausting moments – but at the same time motivating. They motivate me, they motivate others and as I said in my last blog, I’ve even been moved to try and motivate people who I don’t know.

Reading my last blog I see that there’s a certain amount of repetition. Nothing new; only a few days wiser. And what have I learnt? That life continues to be full of surprises and hope. The discussion came up with my oncologist today.  How lucky that I have a dedicated doctor determined to do the best for me.  She told that there’s yet another trial in the pipe-line. This time by an Israeli Jerusalem based company called Silenseed. See their website on  http://www.silenseed.com/

The Silenseed siG12D LODER enables the targeting of an undrugable target. It’s a miniature biodegradable polymeric matrix that encompasses anti K-RASG12D siRNA drug, designed to release the drug regionally within a pancreatic tumor at a prolonged rate for a period of ~12-16 weeks. Clinical studies of its first target – pancreatic cancer – started at Hadassah, Tel Hashomer and Shaare Zedek medical centers in Israel last year. Today, of the 12 people treated world-wide, 9 are at Tel Hashomer. According to my oncologist they’re having encouraging results. By the way, the Israel Advanced Technologies site, is also worth a visit: http://www.ilsi.org.il/companies_life_science_company.asp?ID=1861. It’s is a font of fascinating Israeli latest developments. One doesn’t have to wait for dark moments to let the sunshine of pride come through from their achievements.

We have to believe a solution is on the way. Yet again, I have to consider how cathartic this blog can be. Tomorrow, I might just embark on another “new Project”. As I’ve said before: Another dip into the savings – long may they both (life and the savings) last!  

 

Waiting in the Wilderness

21 Aug

I looked in the mirror this morning and perceived that my eyebrows might have started to grow back. It didn’t fill me with the joy or excitement I had expected. I had a long look at my hair – and if this hasn’t yet started to grow back, at least what I had left has got longer. Picking up the paper this morning, I couldn’t decide whether my garden is half flourishing or half dead. Difficult for anything to survive in this summer’s heat.

But survival is the name of the game. Now, I’m taking stock, looking around trying to find out what’s going on with me; surrounded by the same loving family with their same enthusiasm to keep me fighting.  But do I know in which direction I’m going? Do any of us really know? Perhaps I’ve just got more time to think about it.

From the moment I was diagnosed I knew there was no cure – only the hope that I have to hang around long enough until a cure is found. There’s lots going on out there in the field of research but what about what’s going on inside me? How happy I was to know that some Israeli research proposals have just been submitted in time for this week’s deadline of the annual selection process of the Hirschberg Foundation. It also gave me great satisfaction that a faithful blog reader had asked me the other day to contact a pancreatic cancer sufferer. She wanted me to encourage him to rejoin the fight. Hopefully I’ve given him a few clues.

Religious Jews might say that this is the time of year when we’re all obliged to get some perspective of our lives before the New Year. I find myself doing this on a daily basis – often at more frequent intervals. Perhaps its just par for the course. It manifests itself in daily decisions. Is it worth saving our Shekels or not? Should we go to the expense of repairing/replacing things in the house or just not bother? Another overseas holiday? – A bit indulgent, no?  Have I got enough things to do, or as my youngest daughter says, am I just manufacturing projects?

Maybe, we all ask ourselves these questions all the time. I just don’t remember that they had the same meaning before I was ill.

At least the Olympics had the positive effect of me trying to rejuvenate something else from my previous life – a proposal for the Maccabiah Games.  I presented a concept three years ago after the last games. Although it was politely, if not overwhelmingly enthusiastically received – it didn’t get anywhere.  But that’s another story.. .  .

At least I’m around to contemplate the answers – and if I can find the energy I’ll perhaps pursue some new avenues. Mytomycine C and Xeloda are challenging me at the moment with their side effects. I’m waiting for the Parps patiently.

The Wheel of Fortune Keeps Turning

18 Jul

I don’t know whether I should even be writing this particular posting – so obviously it’s a challenge to know how. Just when I ask myself whether there’s anything else to add to my blog, the big Wheel of Fortune starts moving. The only problem is to know in which direction it’s going.

I was circumspect enough in May, when I posted a “Thank You” to Tel Hashomer, to question whether I’d be back there.  The Parp Inhibitor, under the auspices of Memorial Sloan Kettering, was supposedly coming to Israel, but we didn’t know who would administer it. The oncologist responsible at Tel Hashomer was leaving for a fellowship in the States and I chose to follow my oncologist, who was Head of Department, on his move to Ichilov. Yesterday we were invited to Tel Hashomer to get an update on the Parps.

As fate would have it, administrative details stymied the fellowship and the  oncologist didn’t leave. She’s now progressing on the Parps. Her enthusiasm is palpable. She has that great quality of letting me truly believe that importing the Parps is personally for me. But nothing is certain. Not the timetable, not the ability to receive them and certainly not their guarantee of success. But their trial results have been outstanding – and no-one can take hope away. It’s just keeping everything in some proportion. Will they arrive in time?

In reviewing my case, she comes to the conclusion to move on to Mitomycin C. This protocol has been suggested both by Dr Wolf and by my brother-in-law. Dr Bill Isacoff has always supported the idea. Mitomycin C[1], manufactured by Sigma-Aldrich in the USA, contains three anticancer moieties; quinone, urethane, and aziridine groups.  It inhibits DNA synthesis. It is the most widely used of the Mitomycin antibiotics because it is the least toxic – yet shows a potent anti-tumor activity. It reacts covalently with DNA, in vivo and in vitro, inhibiting DNA replication.

Mitomycin is administered once a month. Either with a hospital-administered weekly push from a 5-FU infusion or a simple swallowing of a capsule called Xeloda – taken five-days on, two-days off .  Xeloda[2] is manufactured by Genentech, of the Roche Group, and is used to treat metastatic colorectal cancer (mCRC).  It is supposedly no worse than the side-effects of 5-FU. So with the Parps “on the way”, I see this as the sign to move back to Tel Hashomer.

How life goes round. I’m agonizing about whether to move back/on again. Then there’s the terrible timetable of waiting for the Parps – knowing all to well that life has a habit of coming up with nasty surprises. Anything can happen. Minutes before we left for Tel Hashomer yesterday, I learned that a former work colleague, all of 70-years young, had been knocked off his bicycle and killed on the spot.

Who am I to complain?

 _____________________________

Pam’s Perspective – 3

29 Jun

So here we are, in the ‘plane, waiting to take off from O. R. Tambo airport to go home to Tel Aviv.  We have had a magical, well-nigh perfect 2 weeks in gorgeous South Africa… our friends and family enveloped us in love and kindness – we ate and ate and feasted our eyes on the most stunning beauty in the world, and day by day I felt myself restored.

But what, I wondered, as my feet hit the pristine sand of the Robberg beach, made me feel quite drunk with joy? So overwhelmed, in fact, that I started turning cartwheels by the surf, as if I was fifteen again.  Yes, the sky was sunny and bluer than blue; yes, the waves crashed gloriously over the dramatic rocks, and yes, the seagulls whirled and swooped playfully through the crisp, clean air.  But there are equally magnificent places elsewhere; what is it about Plettenberg Bay that makes my blood sing?

And then I realized as I strode along the beach, that this beauty is ‘mine’ somehow – the houses on the cliffs are houses we stayed in as kids, the clammy things crawling on the sand are the great-grandchildren of the creatures that tickled us as they squirmed on our arms; it’s ‘my’ warm Indian Ocean.  And, as I reconnected with my happy childhood memories of easier times – when everyone I loved was well and in the prime of life – I felt a great weight lift off my heart.

In the presence of such majestic loveliness it is difficult to feel sad … the waves sing that everything will be as it has to be, and the sky sighs that there is no point worrying.  And I realized that I have sort of been ill, too, for the past 20 months – sick with worry and dread and unhappiness.

And in South Africa I started to heal.  As the days passed my delight in the beauty grew and grew, but my need to get home to Israel and family and friends there, and the different beauty that we have come to love, and the outstanding medical care and top class research and the caring doctors, grew simultaneously.

And now we are going home.  And I’m happy that we got to enjoy this wonderful gift  of two weeks succored in such love and beauty, and I’m happy we’re going home, and I’m happy that Martin was almost entirely well while we were away.

And I’m trying to hold on to that as we start thinking about treatment on Monday … when we’ll have to start planning our next break.

How are you? How was the MRI?

8 Jun

There’s one of those “definition” questions in Hebrew, that translates something like this: How do you define a “nudnik” (one of those irritating sorts of people who simply gets under your skin) – A person whom you ask “How are you?” – and they tell you, to the very last detail.

One’s asked that simple question “How are you?” all the time. In my case it comes from people with a complete range of information regarding my condition. Many tell me how they know how I’m doing from the blog; some know considerably more because they just happen to be close family or close friends. Some think they have the right to know. They follow up my standard “OK” or “Fine” answer with the ultimate question of penetration: “But how are you – really?” And then they’re still others who I’m not even sure know that I’m ill.

But the question still remains valid – and I often struggle with the answer myself. Many of the experts say it’s your clinical condition that counts. If you look well, feel well and can do some of things that healthy people do some of the time – then you’re probably doing well. But science today has no bounds. We have the technical ability of CT’s, MRI’s, Pet scans and, of course, a whole battery of blood and other tests including markers (the subject of which I posted a blog back in November).

From the early days of my illness, Pam and I took the decision not to share results with anyone. The stress of waiting for the results is bad enough – but to compound it with the interest of well-wishers would be just too much. So we keep the results to ourselves. Last week however, my oncologist decided it was time for some updates of my status; it was time for another MRI.

Why an MRI when a CT could suffice is a story on its own. To make that story short, about 20 years ago I had an anaphylactic reaction (have I mentioned this before?). Anaphylaxis is a severe, whole-body allergic reaction to a chemical that has become an allergen. After being exposed to such a substance – it could even be a bee sting – the person’s immune system becomes sensitised. On a later exposure to that allergen the reaction could occur again – and in severe cases could be fatal.

As a result, my Health Fund no longer authorises CTs that require an injection of material – but will allow MRIs. The first appointment we can get is toward the end of July. But Pam, being Pam, gets on to it immediately and presto, we had the MRI last Sunday. Needless to say Pam’s organisation was so fast that the Health Fund didn’t have enough time to issue its financial undertaking to the hospital. A trivial matter. The hospital simply debits you with the costs – several thousands in local currency – and thousands in any other stable currency as well. The run-around needed to sort out the administrative nightmare would be enough to keep any Olympian fit.

Back to the point I wanted to make about MRIs or any other medical test. These are no normal tests for cancer patients. So many people are limited in seeing the scope of their own problems. They see them in such a narrow context, that they lose sight of their real magnitude. But cancer tests are completely different. I can certainly empathise with my own daughters’ final exams results at University this year and their importance to them. But a cancer patient is literally waiting for the hangman to tell him if the noose is getting tighter. And extended waiting time seems insurmountable.

So I had my MRI. It was for my stomach and chest areas. And Pam managed to get the results in what could well be record time. Only to find out that the hospitable had “forgotten” to do the MRI of the chest area! Go figure.

I have one more chemo treatment in this series next week and if I come through it satisfactorily, we’ll forget about MRIs till the long distant new appointment and, one week today, we’ll be off to a wedding in South Africa – for a well earned break. For Pam in particular.            

 

Cancer and the Internet: A Word of Warning and Awareness

20 Jan

The internet is an infinite fount of information. I question whether we are as objective as we should be when reading what we are spoon-fed.

Just recently, two articles on pancreatic cancer appeared on the BBC’s website. The first article is so far from my own experience. Written by Rob Hicks[13], here’s the link: http://www.bbc.co.uk/health/physical_health/conditions/in_depth/cancer/typescancer_pancreas.shtml

It covers the causes of cancer, its symptoms, diagnosis and treatment. For example:

–          Causes of Cancer: seven reasons are cited as to why people get pancreatic cancer. I can’t identify with any of them except, perhaps, the inherited tendency towards cancer – which accounts for 10% of cases. Both my parents had cancer; I inherited the BRCA2 gene.

–          Symptoms: nine symptoms are listed. I didn’t have any of them!

–          Diagnosis: this paragraph, at least, speaks a little more to me. I had an EUS (endoluminal ulatrasound), blood tests for markers (CA 19.9) and a laparoscopy (is that the same as a laparotomy?).

–          Treatment:  the drug gemcitabine is recommended. This is the standard treatment of our own Ministry of Health. It was my initial treatment until my chance introduction to Dr William Isacoff, the UCLA  pancreatic cancer specialist[14]. He told me to stop gemcitabine immediately – and I started using his cocktail instead.

The second article, written by the BBC’s Health reporter, James Gallagher, claims that processed meat is linked to pancreatic cancer and recommends that people eat less red meat. However, it does acknowledge that “the jury is still out as to whether meat is a definite risk factor for pancreatic cancer, but processed meat may be playing a role.” Here’s the link:

http://www.bbc.co.uk/news/health-16526695

It’s now one year since I’ve been on the Ketogenic diet. I haven’t deviated from it since. As you might know, the diet is carbohydrate free, sugarless and without fruit. But it may be the most fruitful thing I’ve ever done – even life-saving. I eat meat almost every day, sometimes twice a day – but never processed meat – as well as lots of chicken, fish, eggs, cheeses and most vegetables. The problem is how to prove that the diet is indeed effective; even using myself as a case-study. I’m still having chemo, still taking food supplements – and I had radio therapy before I started the diet. I know of no way I can prove which of these elements has helped me most.  And scientific evidence can’t be called on either.

I try to keep abreast of the latest research but there is very little, if anything, on the benefit of diet. Pharmaceutical companies, who spend massive amounts on medical research, have a vested interest in developing new drugs and, as far as I’m aware, have no interest in anyone’s diet.

Then there’s the endless flow of internet articles, like the two above – reader beware!

I’ll go further than that. From the moment anyone you know is diagnosed with cancer, tell that person to stay away from the internet. It’s his first step to keep his sanity. No individual is a statistic yet the statistics he’ll see on the internet will almost certainly set him back dramatically. Take it from me. You see the odds stacked massively against you. Nowhere have I read that you could prove the statistics wrong. They don’t even put you up for the challenge.

I remember, shortly after being diagnosed, how I had a peek at “pancreatic” in the internet…just to give myself a bit of background knowledge. The statistics smacked me in the eye. It was a bit like hearing that the brother of someone at work – a work colleague that you really don’t know that well – well, the brother’s son was killed in a car crash. Too real to deny – but too far to feel personally involved. And what do you do with the information? Confronted with the statistics I felt a physical feeling arouse somewhere in the depths of my stomach. It rolled around for a while, till the vile of bile rushed upward through my oesophagus toward my brain. My brain was struggling with the statistics too. My mental and physical feelings met near my tear glands – and released them. I cried. And cried and cried. Why didn’t someone warn me?

A year on, the internet is the least of my problems – I can even blog about it! And write now what I realised a year ago. Save the innocent from the internet.

 


[13] Dr Rob Hicks qualified at St Mary’s Hospital,London, and entered general practice in 1992. He’s a part-time GP and a hospital clinical assistant in sexual health medicine. His special interests are men’s, women’s and children’s health, complementary therapies, nutrition and health promotion.

[14] Refer to my blog “Paying it Forward” published 28 November, 2011