Canada – Seeing is Believing

From comments I received recently there seems to be an equal number who claim to have followed my progress in Canada as those who don’t seem to know why I went and whether I’ve returned.

To make things clear – I’m now back safely in the Holy Land. To those who thought I went on holiday, well, I certainly had a holiday. But the purpose of the trip was to accompany Pam on her reincarnated book launch “For the Love of God and Virgins” – see www.pamelapeled.com . The book is available through Amazon, Kindle and the publisher, Mantua Books www.mantuabooks.com  . It is now also available at Chapters in Canada and at Steimatzky in Israel. The original tour was scheduled for exactly a year ago but was postponed because of my illness.

I always say that seeing is believing – so take a look for yourself: Here are three parts to a television interview Pam had in Toronto with Doris Epstein of MenschlifeTV. The programme is schedule to be broadcast coast to coast in the United States before the end of March.

“For The Love Of God and Virgins” (“FLOGAV”)

FLOGAV – Part 1: William Shakespeare is buried in Jerusalem   http://youtu.be/PMzWg8VOVDo

FLOGAV – Part 2: Israel and Apartheid    http://youtu.be/kdybEBBORmw

FLOGAV – Part 3: The Media and Reality   http://youtu.be/d-ZwlPnoW-U

How can I begin to thank Lewis Manne, of ZAP PRODUCTIONS LIMITED for the filming? Lewis stepped in right at the very last second and offered to take on the job without making any professional compromises. Nothing was a problem for him – just pure and utter dedication from a special man. He just upped and rallied to our call in a sense of volunteering and love rarely seen today. Most importantly, he is supported in every sense by Wendy – not only his wife but professional partner. You can check them out on their website http://www.zapproductions.com  or contact him by email at lewis@zapproductions.com .

For those who think that hearing is believing, then listen to Pam’s radio interview with Zelda Young of CHIN Radio. The interview was broadcast live last Sunday, 20th February.  https://rcpt.yousendit.com/1385758432/9133878b0f3b5eb4d40ca10461392988?cid=tx-02002208350200000000&s=19105

If you wonder what any of the above has to do with pancreatic cancer… I wouldn’t be here to tell you without Pam’s full time support.

My Wedding Anniversary Sonnet[24]

 

Pedantic Peled plods his path although

His cancer challenges the core of man;

While Pam applies herself to all who know

And medical men just manage as best they can.

 

A year goes by he opens up his blog

Has chemo’, radio’, 5-F-U, the rest;

She flays and fights her way clear through the fog,

Convinced the Cornerstone or Parp will best.

 

On ketogenic diet for over a year

Hangs in while searching any better solution;

Don’t drown despite your rending many a tear,

In parallel there’s poison from passive pollution.

 

No better partners will dance this merry dance

Together hope for medical advance

 

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[24] Celebrating 27 years of marriage today

Conclusions in Canada

As Pam’s tour comes to a close, I find it difficult to come to a conclusion about my cancer experience in Canada. Perhaps allowing myself to believe that this is a “developing story” is the best outcome.

The fact that I was able to accompany Pam – and not impede any of her activities – was pure magic for me. And like her book tour, I would like to think that opportunities are opening up, new contacts have been made and there’s plenty to be done.

The “Canada Cancer Experience” was not to be. I’ve blogged about that; my blood count came up short at an inopportune moment – which may have been a blessing in disguise. Two treatments would have probably been two too many and too ambitious by far. Who knows? I just have to keep pushing forward.

Meeting my guardian angel, Agi, was a highlight – and like life itself, who knows where this new-found friendship will lead.

Then there’s always the quirks and curios. I met a couple of people who told me I looked so much better than they expected. On the face of it that sounds nice – so I thanked them. But what sort of face were they actually expecting? Then there was the waiter in the restaurant last night – very professional and polite. We told him I was on the ketogenic diet. Like so many other restauranteurs he took great pains to be sympathetic to my dietary requirements. But with his knowledge came a certain look – further illustrated by the exaggerated, quizzical way he wished me well and hoped I’d be back. He even gave me a bottle of spices – a farewell present?

And talking of presents – I bought myself one (or two) and managed to surprise the wife… I went to “hellandgone” to buy a new golf bag, golf shoes and gloves. Wow, said an amazed Pam… as she wished me many long seasons ahead. The real surprise was the sales assistant. Married to a kibbutznik, former kibbutznik himself with a haredi brother in near Modi’in…

Am Isra’el chi… 

Meeting Your Guardian Angel

I sometimes feel that what’s happening to me is directed by the Divine. On the other hand, I’ve blogged about co-incidences that make me think I have a guardian angel. Yesterday I met her.

My blog has reached corners I could never have conceived of. And reconnected me with characters with whom I had long lost contact. But when a cousin of Pam insisted I get to Dr William Isacoff – a circle was completed. Why him? I asked. “‘Cause he’s one of the best pancreatic cancer specialists there is”, he replied. I’d already been referred to Bill a couple of weeks earlier by Debbie Oppenheimer. Now this cousin is telling us that his connection was through Agi Hirshberg, who, in gratitude for Bill’s treatment of her husband, set up the Hirshberg Foundation for Pancreatic Cancer Research[18] . What a vote of thanks – and what a woman.

This powerhouse of a woman, who is beautiful inside and out, contacted me immediately she knew I was ill – and continues to inspire me with her unbounded concern and love. Yesterday she took the unprecedented step to meet me inVancouver. Step did I say? Not even a hop, skip and jump – she flew in from California. Pam and I met Agi in the lobby of her hotel. Even though we’d never set eyes on her before – I think we’d have picked her out in a crowd of hundreds. It was like meeting a long-lost relative; a living legend.

The facts speak for themselves. The Hirshberg Foundation is at the forefront of pancreatic research and inspires so many. It makes me feel that I should be helping too. At dinner, we introduce Keith to Agi and the discussion deals with the Ketogenic diet.  My hope is that research may come of this, and who knows – others may benefit as well as me. 

 Thank you, Agi. 

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[18] The Hirshberg Foundation for Pancreatic Research was founded by Agi Hirshberg  http://www.pancreatic.org/

 

The Impossible Dream

Before I got sick I used to dream of playing golf on courses round the world. I’m not one of those people who need “separate” holidays – far from it. Pam was prepared to put up with being my caddy on the rare occasions golf fitted into our travel plans. That dream replaced my boyhood one of years ago in the days when Weeks, Worrell and Walcott [22] were West Indian sporting legends. Cricket was my craving and the Caribbean the epicenter of my world.

How life turns one upside down. A couple of postings ago I touched on the problem of treatments. My decision to go to Canada was partially based on Keith’s ability to set up treatments in Vancouver and Toronto. Yesterday Keith took me to Lions Gate Hospital for a treatment. Was my golf dream being replaced by an inter-continental tour of cancer centres? First Vancouver, then oncology in Ontario? Was this really going to be a first? It’s difficult enough to psych oneself up for a regular treatment – I’ve told you about my “Tel Hashomer Syndrome”. But as we drove to the hospital, my mind was meandering. Even fantasizing. Could I really be thinking in terms of writing a best-selling book “Guide to Inter-continental  Cancer Centres” – based on personal experience? Come on, I mean we’ve got Lonely Planet, the Michelin Guide…

We get to the oncology department and I’m making mental notes of the differences between Lions Gate and Tel Hashomer. The first thing I notice is the donors’ plaque; a mere four names on the board. Topping the list: “The Estate of Hossein Tehrani”[23] . Then there was the patient-bed and/or couch ratio. About 1:5 at Lions Gate compared to 5:1 on occasions at Tel Hashomer. I’m getting carried away….

How life continues to turn you upside down. The oncology doctor pulls out my blood results from the previous day. For the first time ever, my blood count is too low for a treatment. I’m dumped down to earth with a bang. Literally. It takes more than a moment to get myself together. Then the oncologist, Pam, Keith and I reach the inevitable conclusion – to accept that there will be no treatment.

The dream is impossible. But it’s Valentine’s Day in Vancouver. At least I managed to surprise Pam… but that’s a different story.

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[22] In the 1950’s Everton Weeks, Frank Worrell and Clyde Walcott were known in the cricketing world as “The three W’s” from the West Indies. Was there ever such a great sports team or was it an illusion of my youth?

[23] Hossein Tehrani was born in Tehran, Iran (formerly Persia) in 1912 and died February 25^th 1974. According to Wikipaedia, he was a musician and father of the “tonbak” – otherwise known as a simple clay vase covered at one end by a skin.

 

Anaphylactic Reaction

A 12-hour flight from Tel Aviv to Toronto, plus a 2 1/2 hour stop-over (which the baggage handlers rounded up into a total of four), plus another five hour flight – still doesn’t give me enough time to think of the right words to thank my brother- and sister-in-law, Keith & Sheila, the ones who put me onto the ketogenic diet, who are waiting to meet us at Vancouver airport. I need to thank Keith for saving my life.

Twice, actually.

The first time was a bizarre incident almost twenty-five years ago. Keith was doing a locum quite close to our house in Kfar Saba. I was supposedly being desensitised for allergies at Tel Hashomer; a series of 12 injections. I’d had about five for the previous five weeks. Keith offered to give me the sixth at home, to save me the hassle of the hospital. Suddenly, I’m not feeling too well. Pam tells me to take an anti-histamine or something similar. I go to our mirror-faced medical cabinet and see what seems to be my own reflection – except it’s full of red blotches. But it’s my chest that’s feeling the pinch. I peer at it in disbelief and can’t even panic. Keith will fix it. As luck would have it, Pip had just popped in and proffered to take me to the doc. To cut a long story short, we get to Keith – who takes one look at me – and we literally fly to the Meir Hospital. I’m having an anaphylactic reaction [21] . I hardly notice he has a syringe drawn up between his teeth as he drives, just in case. ER is there to recognize emergencies and jab me with the corrective cortisone. It was over before anyone could explain to me what an anaphylactic reaction or shock is. Keith had simply saved my life. I never knew I’d been in danger – let alone being about five minutes from meeting my Maker.

This time it’s different. I know how serious pancreatic cancer is. I have no idea how long I’ve got. But then how different is that from anyone else on this earth?

The flight is long enough to write thus far. No thoughts of how to adequately say thank you have taken off. I’ll continue after landing.

Keith was there to pick us up with his gorgeous daughter, Natalya. I tried to find the right words – which simply brought a sort of embarrassed smile to his face. It was so reminiscent of his late dad, Sidney. I realised yet again what an amazing family the Symons are – both Keith, Pip and their families.

And I bless our safe  arrival inVancouver.

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[21]  Anaphylaxis is defined as “a serious allergic reaction that is rapid in onset and may cause death”. It typically results in a number of symptoms including an itchy rash, throat swelling, and low blood pressure. Common causes include insect bites, foods, and medications. On a pathophysiologic level, anaphylaxis is due to the release of mediators from certain types of white blood cells triggered either by immunologic or non-immunologic mechanisms.

Medical Madness or Managing One’s Illness (Part 2) [19]

This week I had to resort to my meager management skills for one of the thornier aspects of being ill – managing the medicine. It’s not just the medicine of course, but dealing with differing medical opinions.

My oncologist has been concerned for a long time that continued usage of Folfirinox (5FU) would lead to irreversible side effects. He put the limit at 12 treatments – this week would have been my 20^th – but, for various reasons, he blew the whistle. So here’s the rub. To what do I change it? Pam and I sit in his office and listen to his alternatives; Gemcitabine (Gemzar) with Tarceva (Erlotinib); Gemcitabine with Abraxane or maybe stay with the 5FU. Who’s to decide and by what criteria? My medical expertise has come a long way in more than a year – meaning I’m not completely clueless anymore. Perhaps I’m just beginning to know how little we all seem to know about the right choice. At this point I have to take you back to the beginning.

When I was diagnosed I was told that I’d start radiotherapy and chemotherapy immediately. I thought time was of the essence and was more than grateful that the treatment would start the next day; my first session of radiotherapy and the following day a crack at chemo. In my naivety I thought this was great – what I described in a previous blog as “traveling through a medical maze in a whirlwind of medical activity”. But did I stop to ask what level of radiotherapy, what voltage I would receive? What chemo protocol would be concocted for me and why? If I had three brothers, I’d be the one who didn’t know how to ask.

My good fortune was many-fold; having my brother-in-law, who as a doctor himself, was only too ready to help, explain and advise; my chance connection to Dr Bill Isacoff[20] and Pam’s persistence to get the right answer.  Today I can add a few more notable names to my list – but does that make decision making easier?  Often, opposing opinions are on offer.

Now throw in the curve ball – how about a break in treatment while in Canada? Is a rest (from treatment) as good as a change (in treatment)? Keith can arrange a cancer treatment inCanada… that’s certainly turning things on their head. No wonder my head is spinning.  

I have no answers – I’d be happy to know how my blog readers make their own critical decisions.

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[19]  Part 1 of Managing One’s Illness dealt with administrative problems (posted on 1^st January)

[20]  Bill Isacoff was instrumental in changing my protocol – see my blog “Paying it Forward” from 28^th November last year.

Cancer in Canada

We all know that life works in strange ways but this week I was brushing with the bizarre. Ideas concerning “normalcy” irritatingly swirled in my head, mainly because I’ve been so preoccupied in helping Pam plan her trip to Canada.  Her publisher has resurrected her book-launch tour[16]  and I’ve lucked-in to tag along (the week after next)!

I woke up a couple of days ago thinking that I need more to occupy myself during the non-treatment weeks. I immediately did something about it – a deferment if I’m honest – by inviting myself to see one of my brother-in-law’s building projects; something to do, you understand. And then while there, I get this phone call from an old colleague who is very eager to meet me – so eager that he’s actually in the area. He can’t believe I’ve scuttled my sick bed. I rush home and he rues how the old times are just not what they used to be… but he does discuss an interesting research assignment. Strange. I’d no sooner said “more to occupy” then the very next minute he pops in with a proposal.

We discuss the research and he asks a few questions about how I would approach the subject. I tell him there a few legal issues involved, which I’d discuss with a few of my cronies; get them sorted out and then see what plan I could come up with. Coincidently, just a couple of days before, a lawyer colleague of mine – with whom I haven’t been in professional contact since well before my illness – was in Israel, and had phoned to find out how I’m doing. My real hope was a friend in England– a solicitor, whom I’d also not spoken to for far too long.

The phone rings. Who should it be? That very friend from England!! You could have knocked me down with a feather. Had this all been synchronized? Coincidences yes, but the timing made it look like a Brian Rix farce.

I’d been toying with the subject for my next blog but felt that I’d sort of covered “being normal when you’re ill” in different ways. I get ready to start Googling but my computer is winking in-coming mail. From non other than Agi Hirschberg, with an attachment of a blog from someone called “Linsey”.  I read the blog [17] – wasn’t this just what I was thinking? Judge for yourselves:      

water under the bridge, Posted on January 31, 2012 by lindsey

I have become so immersed and so comfortable in my world of cancer that I forgot how weird it is to be 26, look normal, and have cancer. I have so many friends my age with cancer now, I take classes where they talk about the prevalence of cancer, my doctors are used to it and used to me, pretty much everyone I interact with now knows thanks to my video…I guess I just started thinking that it’s not so weird to be 26, look normal, and have cancer.

Today I was reminded: It’s still weird.

There’s a whole spectrum of reactions that people have when I identify myself as a patient in cancer-friendly situations (as the case today was). It’s sort of interesting to observe. I don’t get offended. I don’t feel uncomfortable. I just don’t really know what to say. I have a lot to say about a lot of things cancer-related, obviously, but on the subject of me being young and having a rare cancer, well, I don’t have much to say. What is there to say?

It happened.

Some people try to explain it, or try to rationalize how someone who’s 26 and female could end up with something that’s usually found in men over twice my age. Other people are a lot more interested in trying to explain it than I am. Again, it happened. Research isn’t quite at the point of being able to target treatments based on causes or triggers…so what does it matter? I think there’s an issue of blame with cancer, though, that I don’t often think about.

Cancer is often lumped in with obesity, diabetes, and heart disease as western ailments that may or may not be caused, or at least encouraged, by the “western lifestyle.”  And there’s often some blame associated, because if it’s just a matter of driving everywhere, not exercising enough, eating fast food, eating processed food, drinking soda, not eating enough vegetables, watching too much TV, etc, etc, these are presumably things people can control (but the urban planner in me says the built environment in many places doesn’t make it easy). However, it makes a little more sense logically to associate the latter three ailments with some element of blame or control…though I don’t think that fully explains the problem. Nevertheless, cancer always gets thrown in there too. You’re more likely to get lung cancer if you smoke so other cancers, too, must be caused by something people did to themselves. Smoking, drinking, and not recycling–right?

But i’m young. Too young, perhaps to have done something to give myself cancer. Also, I have never smoked and I have always drank fairly responsibly (I mean, I went to college…), recycled, exercised, and eaten pretty healthily. So people try to rationalize it in other ways: “Do you have a history of cancer in your family?” Yes, but nothing that is remotely related to what I have. “You’re so young, so it just has to be something genetic.” I don’t really know. I don’t really think I will ever know. It happened.

Once all the permutations of the causes of my having cancer are exhausted, some people ask questions. Others express sympathy. Some offer hope. Others acknowledge what a hassle it is. Some are just surprised. Others pretend I didn’t just identify myself as a cancer patient/cancer survivor (i mean, liver) and skirt the issue. This is my favorite reaction and I think the most common among people, especially those not in the cancer-friendly community. It always makes me wonder what pre-cancer Lindsey would do in the same situation. She might actually have skirted the issue. I might still do this now.

I was hesitant to attend an event that would put me in contact with these sorts of reactions because I don’t really need sympathy or hope or hassle acknowledgement or surprise or a change of subject anymore. It’s nice to hear. People are really nice, actually. But it happened already. I’m fine. It’s just weird to think that i’m an anomaly because from my perspective, i’m normal.

But just as my my friends and family have now gotten over the novelty of having a peer and daughter/sister/niece/granddaughter/cousin with cancer, people I meet who are initially surprised do too. And I can learn a lot from them, as I did from many of the people I met today. A lot of smart people get cancer, and a lot of smart people research cancer, and treat people with cancer, and support people with cancer in other ways. It’s pretty inspiring. And it makes me feel a little better about the hand I’ve been dealt.

Did you know that the amount of funding going toward a disease is correlated to the number of treatments available for that disease? More money, more treatments. Makes sense. So maybe the research can’t prevent what’s already happened to me–for whatever reason it happened. But there’s some promising research on genetic causes and on cures. More money, more research. So, if you don’t feel like supporting my cause, but instead want to support something more universal, the Hirshberg Foundation for Pancreatic Cancer Research[18] is a good cause to consider.

I can so empathise with Linsay.

And who is coming specially to Vancouver to meet me? None other than the incomparable Agi Hirshberg. Who says life isn’t interesting?

 

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[16]  Pam will be promoting her book “For the Love of God and Virgins” in a trip to Canada scheduled for 12-23 February, 2012 with speaking engagements and book signings in Vancouver and Toronto. For more details visit  www.pamelapeled.com

[17] Linsey’s blog:  http://iamaliver.wordpress.com/2012/01/31/water-under-the-bridge/

[18] The Hirshberg Foundation for Pancreatic Research was fonded by Agi Hirshberg   http://www.pancreatic.org/