Archive | November, 2011

Paying it forward

28 Nov

We all know what “paying back” means. Many of us spend too much of our lives in financial debt and in paying back what we owe. Then there are kindnesses of others that we feel we have to repay – but we simply don’t get round to. Which reminds me of one of my favourite Ephraim Kishon stories – the one where after hours of searching for a parking meter a considerate driver makes way for him. Only for Kishon to have no money for the meter. He borrows from a passer by. Each time Kishon wants to repay – he’s thwarted. The story is a classic.

This story is about paying forward. A true story that gives me goose pimples each time I think about. It starts over 70 years ago. My parents got married in London in 1941. Traditional Jews living in a nice neighbourhood. One day their Rabbi asks for volunteers to take in kids from the “Kindertransport”. Only two couples took up the challenge – my newly-wedded parents and one other couple. I don’t know why the response was so poor. Not too many left to ask now. Did British Jewry then think of the kids as “foreign”? Speaking a foreign language and foisting foreign habits on families, not in keeping with the Queen’s?

Who knows? My parents fostered a 14-year young girl named Sylva Avramovici. She stayed with them on and off till after the War. Soon after, she realised she would never see any of her immediate family from Germany again. With my parents’ help, she left for The States. To cut a long story short, soon after she arrived she met her future husband, Eric; they married and lived “happily ever after”. They had three children, about the same age as myself and my siblings. Our two families kept in contact over the years. I was more in contact with just one of their children, the Oscar-winning film producer Debbie Oppenheimer[1], who today lives in California. Fast forward to the present.

Last autumn, Pam’s novel, For the Love of God and Virgins[2] was published. Plans were laid for a US and Canadian launch. Coast to coast lecture tour, interviews, you name it. In California we’d meet up with Debbie. Sounded too good to be true. Then I was diagnosed with pancreatic cancer. Our world was instantly up-side-down. Our previous life put on hold. Man can plan – life has a habit of making changes when we least expect it.

So we e-mail Debbie to tell her that our plans have changed. And explain the reason why. She’s very upset for us. She writes back and mentions that  years ago she was very friendly with a chap called Bill Isacoff – who today just happens to be one of the world authorities on pancreatic cancer. Are we interested in contacting him? You bet!                                                                          

Dr William Isacoff is based in UCLA Hospital, California. We made the connection. We asked Keith, who was intimately familiar with my medical  details, to discuss the case with the man himself. At this point I go cold. The kindness of people never fails to amaze me. Out of the goodness of his heart, this stranger, Dr Bill Isacoff, simply tells us what we have to do. We listen carefully. Keith confirms – this is what you have to do.

 We arrange to see my oncologist, Dr Ido Wolf, Head of Oncology at Chaim Sheba Hospital, Tel Hashomer. We tell him what we want to do. This is not an easy situation for our oncologist. But, to his great credit, he agrees to authorise my new treatment, even though we understood that it was not yet being used for pancreatic cancer at Tel Hashomer.

How life hangs on the finest thread. Is it fate, or luck or destiny?

I wouldn’t like to leave today’s blog with you thinking: “It’s alright for him… he’s got contacts… it couldn’t work out for me”

Not so fast – let’s get this in proportion. There are two things I want to share  with you: networking and medical management. Let’s hope I’m up to writing again soon. The fight goes on.  


[1]After Sylva died in 1993, Debbie decided to research her mother’s past and the Kindertransport. Sylva barely spoke about the Holocaust or her experience of the Kindertransport. Debbie published the story in her book “Into the Arms of Strangers” and then proceeded to produce a documentary film of the same name. It won the Oscar for the best documentary in 2000.   

[2]“For the Love of God and Virgins”  (www.pamelapeled.com) is available through Amazon, Kindle or the publisher, Mantua Books  (www.mantuabooks.com)  

Food Supplements

25 Nov

Things have quietened down since yesterday. The morning turned out to be really hectic for Pam, easier for me. I “hit the wall”, crawled into bed. When I woke up, Pam calmly tells me that everything has been arranged. No way that Pam would wait six weeks for an MRI. Clinical trials are opening and closing – and time is of the essence.

Today gives me the chance to get back to a subject on which I’ve had a lot of feedback – food. Specifically: my diet. Yet I haven’t touched on food supplements – so that’s today’s menu.

I must stress that all my supplements are bought over the counter. Medical opinion is nowhere near unanimous about whether they are beneficial. But my brother-in-law, Keith, is in absolutely in no doubt. I have full confidence in his medical opinion – and something is certainly working for me. So here’s the list of what I take.

  • Turmeric –  a significant ingredient in curry powders. Although usually used in its dried, powdered form, turmeric is also used fresh, much like ginger. Research shows turmeric ameliorated the severity of pancreatitis-associated lung injury in mice.
  • Resveratrol  – a natural red wine extract. Anticancer, anti-inflammatory, blood sugar-lowering and other beneficial cardiovascular effects.
  • Probiotic  –  to improve intestinal microbial balance.
  • Multi-Vitamin tablet – a supplement to deficiencies in ketogenic diet
  • Calcium Magnesium – control of cramp
  • L-Carnitine – control of neuropathy
  • Omega 3 – weight stabilisation and anti-cancer properties.

For someone who had never taken any food supplements before and almost no medication, this was a serious turnaround. But that was my previous life. The turnaround was neither natural nor normal. A lot of pills and no stomach for stupidity. Was there really a need to pour out my pills wherever I went? But this is my new reality. I found my mentor and follow his advice. These pills could be my life-saver – so I slowly had to embrace them.

How can I thank you, Keith?  

It doesn’t end there. Whereas the food supplements are discretionary, I’m still on some prescription drugs. However, I’ve made every effort to reduce my dependence on the medical madness that there’s “a pill for everything” syndrome.

Should anyone wish to have more detail, I’m only too happy to answer specific questions.

Pam’s Perspective

24 Nov

 

 

12 o’clock start to my teaching today: oceans of time to get organized, go to supermarket, catch up.  Arrange Martin’s MRI.  Let’s start with that. Call Tel Hashomer – 3 tries (hold on for what seems hours) and finally get through – first apt. end of Dec.  Call our oncologist – too long to wait.  He tells me to get an earlier date. He can’t help.  No-one at TH can help.  Think.  Joanna was at gan with a girl whose mother has top position at Assuta.  Call her.  She’s on to it – she’ll get back to me. In meantime go and pick up new car. We inadvertently set off alarm as we leave, we wait for our expensive alarm company to call us – they don’t.  We leave anyway, after 6 minutes.  Drop Martin at Toyoto to pick up car – the side-effects of his latest treatment are kicking in and his legs are buckling … feel terrible leaving him, but have to organize MRI. Friend’s mom calls back – we have a date, early next week!  Need blood test results and tofes 17. Blood test results are in file at hospital.  Think, think.   Call Oncology nurse.  She prints them out and faxes them.  Call to thank her.  Call Martin’s office to organize Macabbi form – she calls back: needs letter from our dr.  Call him, organize.  Call office back. Shower – while in shower, alarm company calls to ask if all’s okay – one hour too late.  I threaten to report to “Kolbotek.”  The manager calls, but I’m covered in shampoo – I tell him to call again.  (He doesn’t – am I going to contact “Kolbotek?”) Dr. faxes form.  Arrange the Macabbi permission. Phone office to say all’s done.  Martin calls – needs forms for car.  Organize them.  He comes home to pick them up; goes to Post Office. So tired; I feel so bad not going for him, but need to finish admin.  Be’sha’a tova we have new car – but no time to go outside to see it.  Later.  Am teaching at 12.15.  One hour left.  What am I teaching today?  Will think about that soon.  Maybe time for tea?

Try to get different oncologist about possible new trial.  Keep getting put through to wrong dept.  30 mins left – haven’t prepared class.  Eat breakfast while drying hair. Call Tel Hashomer again.  Put phone on loudspeaker and put on make-up. Back to wrong secretary.  Call our own oncologist to tell him about new date – no reply.  Email him.  Martin is home – too tired to talk – he collapses into bed.  Find number of friend he’s invited to join him on golf-course, call and cancel.  Someone phones, wanting to visit us.  Have to be in class in 10 minutes – still not dressed.  Creep into room.  Get ready.  Pour my now-cold tea into plastic cup and think think think what I need for teaching.  Videos; yes. File; got it. Book – oh God, book.  Grab it.  No time to look at new car – 4 minutes till my class begins.  Set off for Beit Berl – Yay! The lights are both green.  Get there with 11 seconds to spare.  What the hell am I teaching today – haven’t prepared.  Think it’s Chaucer’s “Prioress’ Tale’ – ‘k, will be able to wing that.  Run up stairs preparing to explain why I’m leaving my phone on … and … What. Is. This?  – My classroom’s empty.  Check file – right class, right day – did I make a mistake?  See a student – class is cancelled – a concert today – on the lawn, in the rain.  Everyone’s gone home – didn’t I get the SMS?

Unbelievable Response

23 Nov

Never in my wildest dreams could I have imagined the response to this blog.

It’s now one week old. I’ve always hoped something good would come out of my misfortune but didn’t see myself writing every day.

So many of you have written such kind, warm, generous comments both to the site and to me privately. Apologies to anyone to whom I didn’t reply directly.

Tomorrow, its eighth day, should be the blog’s “Brit”. I must say that I’m contemplating a cut. I might just have to trim down the output to less than a blog a day. Yet you give me the encouragement to expose the experience even more.

I hope it’s doing as much good for you as it is for me.

 

 

What do you do when you’re attached?

22 Nov

What do you when you’re attached?  (My chemo protocol entails coming home attached to a bottle for 44 hours, after the hospital infusions).

Each to his own. Some people are so exhausted that they simply can’t move. I know the feeling. I refer to it as “hitting the wall”. Feeling as though I’ve  literally walked into a wall which drops me into heap. I can’t fight the phenomenon. I crawl into bed – sometimes I need to be helped – and sleep it off. 

Fortunately, that’s only some of the time. Not too often. My ever-caring wife for the rest of the time begs me not to “do too much”. But it works for me. I like being busy. Funny how life works out. Having been forced into early retirement, I now have time to volunteer and participate in projects and pastimes that I never had the time for. Keeping busy also keeps my mind off all those continuous aches and discomforts (particularly from the abdomen) which never let you forget what’s really going on. I simply do whatever I need to – with my bottle firmly attached – be it pottering in the garden or getting out and about. Some people may think I’m a bit of a “hero” but it’s not that – I just think I’m doing what’s best for me. There’s also the aspect of being in public in such a peculiar situation – hooked up to a  bottle of 5-Flourouracil. Too many of us fear things we’re not familiar with. When people see it for themselves for the first time and are able to ask me a few questions face-to-face, it helps both me and my interlocutor.  

So what did I do today when attached to my chemo? I bought a second-hand car!!! Another bizarre aspect of my new reality. Many of my perspectives have changed. I was always the conservative one in the family, with an eye on the finances – saving for the “rainy day”. Well that day truly came last year. Not only did it rain, at times it poured – we all do our share of crying in the family. I try not to feel sorry for myself – my character is to keep looking forward. Not look back nor stand still. When I was in hospital, and then in a wheelchair, I  certainly didn’t need my car. Neither Pam nor I were going anywhere – except for too many visits to Tel Hashomer. We “lent” Pam’s car to our daughter, Sidelle, who lives in Jerusalem. It made life so much easier for her especially as she, like her sisters, was so keen to get home to visit me as much as possible.  It’s impossible to turn the clock back and extremely difficult to “unlend” a car from a caring and loving daughter. Now that I’ve got the time, energy and will-power to do more, why let transport limit my activities?

For the moment, we’re making life as easy as possible.

 Another dip into the savings – long may they both (life and the savings) last!  

 

 

     

Another Chemo Week

21 Nov

This morning we set off for yet another week of chemo treatment. Another in my ongoing series of bi-weekly chemotherapy. Another “day at the office”.  Only this time I brought Pam’s laptop to write today’s blog.

Can there be any comparisons between a day at the office and an oncology day clinic? You certainly start out the same way. Leaving early to fight the traffic, finding a parking place, and getting the administrative necessities out the way. Retrieving your file, ensuring your day is computer registered. Except you queue for a blood test instead of the coffee machine. At 8:20, stuck in traffic, I get a phone call from the oncology head nurse. She wants to confirm the right quantity of Irinotecan. Where do you get such dedicated staff? Well it’s true that Margalit just happens to be married to a tennis partner of my brother-in-law, Philip. This only shows what a small world it is and how luck plays its part.

We’ve come a long way in a year. What I did I know about chemotherapy when I started a year ago, what drugs were being administered? I had no idea what goes on in hospital. I certainly didn’t know what drugs were about to be administered nor for how long.  Today I start with my secret pill, Lorivan, 1mg of Lorazepam, used for treating conditions of tension and anxiety. It gives me the great advantage of sleeping through most of my treatment. This is also weird for me – prior to my illness I had never taken a tranquillizer in my life.

Last year we had no idea what chemotherapy treatment meant. So we decided to make it a family occasion. My wife and three daughters came for support. Two of them gave up their university studies for the day, while our youngest daughter got compassionate leave from the Army.  We arrived at the Tel Hashomer Oncology Day Clinic not knowing what to expect. There was something extremely comforting in the shared experience. The benefits remain till today.

I woke up in the clinic today not realising that the biochemistry results were waiting.  I didn’t enquire. Pam gets them each time, and then tells me. While I’ve been sleeping, she’s been running around the hospital trying to establish whether I’m eligible for a new trial being conducted world-wide by AstraZeneca. Keith has always told us to keep ahead of the game: “Keep cancer guessing”. You can always return to a protocol that was still working when you left it. The decision is not ours. Firstly, we need other medical input – scans and the like. No one in the world could be more efficient in managing my case than Pam. She’s on to making the appointments and getting the right insurance forms immediately. And we can still squeeze in two meetings; one with our oncologist – who just happens to be head of department, and the other with the doctor responsible for the new trial.

My infusion in hospital is over for the day. I’m still amazed how technology has moved on. They attach me to a bottle of “5FU” (Fluorouracil) and I’m able to continue my chemo at home for the next 44 hours.

Hardly your average day at the office!                                             

                                             

Markers

20 Nov

Markers are extremely telling for cancer suffers. In my case, the “markers” I’m referring to are the levels of CA 19.9. This is a numerical indicator of your cancer level. In healthy people it can be as high as 35 without a problem; in cancer suffers it can get up into the thousands.

There are a couple of issues that sort of go together with measuring markers: dealing with fear and what I call the “Hospital Syndrome”. The closer I get to the hospital, the worse I feel. It’s a physical feeling of being unwell – but there’s also an unsettling psychological awareness that raises its head, starting a few days before my bi-weekly chemo treatment. Fear and anxiety are serious, complicated issues. I’ll write about them in more detail later.

How important is the marker and who should be up to date with the marker level?  It’s easy to see whether CA 19.9 has gone up or down. The numbers are on the print-out you get after a blood test – 3 pages of “too much information” of different physical functions. Columns of chemical names or initials with queer sounding quantities, and too many numbers.  But CA 19.9. is there too, together with another cancer measurement: CEA. Knowledge and understanding are so important – so just spend a couple of minutes and find out where you stand. Ask your oncology nurse or doctor to help you read the print-out. 

So how do we understand the results? If the number is down are we doing OK? And if it’s gone up, are we to go into panic mode? There’s certainly no excitement waiting for your latest result – it simply adds to your anxiety and stress levels. The ABC of getting through this is to always try to reduce those levels. Nothing should phase you.

Let’s look at this more carefully. Firstly, medical opinion is split as to value of a numeric test. Objectively, do we know whether lab conditions were the same as the previous test, and whether a blood sample taken in the same conditions? Then, how are you feeling – both physically and mentally? If you’re feeling better, then believe it all the way.  And CA 19.9 is only one form of measurement. You can’t have a CT or MRI as regularly (or cheaply) as a blood test. Get the marker result into some proportion – it’s not the last word.

Who should be privy to the marker results? On this question, I make no compromises. It’s between me and my oncologist – and of course my immediate family. I’ve never shared this information with others nor told them when I’m having blood or any other tests. Questions in this area – even from the most well-meaning friends in the world – can add to your stress levels.

I well remember one of the marker tests a couple of months into my treatment. We agonized for days before over “what if” situations – CA 19.9 up or down? The day of the blood test dawned. The hospital can even give you a beeper so as you’Il know immediately when the results come out. The beeper beeps. A run down to the secretariat. Short of breath, with all the justification in the world, and surely we don’t have to wait in line? Except everyone else before us was an oncology patient too, each deep into his darkened world. Our wait ended with the news that the printer was on the blink. No problem – just ask at the nurses’ station. The nurses’ station had no nurses – too busy. Stress levels ratchet up another notch. The first nurse arrives – she doesn’t have the password to start the computer. Nor the second.  Stress levels ratchet up another notch. Then finally, a nurse clicks the computer into action. We take three calls on our mobile from anxious family members. Stress levels ratchet up another two notches. The screen scrolls up and I see my marker – with the result.  

 Today, I’ve taught myself to keep the marker measurements at the back of my mind – and share the numbers with no-one other than my immediate family. It works for me.