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March 2010

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When a holiday comes, my grandchildren say ‘yes’ to all

Monday, March 29, 2010 in family by admin | Add a comment...

MARCH 28, 2010 11:30AM

My grandchildren are four and nine years of age but have always known how to get the most out of religious holidays.   As far as I know, their religious knowledge comes from school.  Their parents have two or three religious heritages but do not affiliate themselves with organized religion.

Their great grandmother was very surprised when she invited the family to a seder and the children were actually excited to go.  The four year old seemed to know all about it; the food, the significance and even the service.  I remember when the nine year old was four and wanted to have Hanukkah rather than Xmas.  She was focused on getting a dreidel and also taken with the idea of getting presents every day.  She knew the dreidel song and all about the candles.  I felt very strange providing a Xmas tree.  She took it in her stride.  Xmas tree and candles and dreidels and Hanukkah  and Xmas.  She wanted it all.  It was not that she was saying ‘no’ to Xmas but yes to everything.

Right now, Clara, the nine year old, is consumed with reading about the Greek gods.  I don’t know if this means she will go pagan and start having ritual sacrifices, which I hope won’t involve her younger sister.   I have a feeling it will be white robes and gold jewelry. Wait until she gets hold of the idea of offerings.  Then we’ll all be in trouble.

I can’t get too obsessed with the idea that they may have missed the point of religious experience.  I think they are getting the information they need and can make their own decisions when they get older.  For now they have taken on the zeitgeist.  They are surrounded by many religions at school and have inherited genes from many religions and cultures.  I only hope the world they grow up in learns to embrace multi religions and and cultures and to treasure what is most valuable in all of them.

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Health Care Passes; My own health care plan might fail.

Monday, March 29, 2010 in Decisions, delusions and befuddlement, cancer prognosis, food by admin | Add a comment...

It’s good to be alive when all odds were against it.  On the same day health care passed I passed my MRI scan.  My cancer has shrunk in size to a few nodes of less than one centimeter.  Two years ago I was diagnosed with three areas of metastatic breast cancer. After three operations, radiation, chemo and avastan, the cancers are reduced in size, one not showing on the scan and two less than one centimeter in size. Obama’s speeches on health care and the aggressive treatment I received worked.

Life takes as much getting used to as impending death. I have to get my mind off funerals and wills and on to living.  Time to get myself together.  Not an easy task at the best of times.  When I look at diet and fitness regimes I feel like ground hog day.  Been there and done it numerous times. I reread the South Beach diet, signed up for several low fat online diets and had another look at Atkins, even ordered the next book.  I’ve now been three days without carbohydrates.

I feel as divided about my own health care as the USA is about theirs.  One part of me wants to go on a diet and lose twenty pounds, another part of me wants to pig out and never mind the consequences.

Fitness is something else I’ve been there and done.  Does being alive mean I have to go back to the gym?  Could I still do a rowing machine, lift some respectable weights or do Pilates and keep my wig on at the same time?  It doesn’t feel promising.

So like Obama I have to make compromises. The bill that will get past my divided self will not be all that is needed.  It will not satisfy the part of me that wants to feel revitalized  again after two years of very aggressive cancer treatment and it won’t satisfy the other part of me that wants to lay back and let the chips fall where they may.

Like Obama must have done, I look at what there is to be worked with.  Overweight, exhausted, grumpy, pins and needles in hands and feet and worse of all no voice: recovery doesn’t look good.  If I could start small and get the first bill past my negativity, I could tackle a few modifications and improvements six months or so down the line.  I still have one more month of chemo treatments so I have time to make a plan that I can vote for.

As of three days ago I started on the no carbs diet, induction phase of the Atkins diet and phase 1 of South Beach. I started when I looked in the fridge and found it full of treats. Crowding the fridge were  chocolate cake, blueberry cheesecake, and  a few pieces of carrot cake.  It was as if the Republican tea party had held a meeting in the refrigerator. You couldn’t even find the vegetables. When you did, they looked pathetic, half frozen in the bottom drawer.

There were also a few ready meals that had enough calories to be a dessert.  My fridge was full of cauliflower cheese, spinach in a cream sauce and my current favorite,  creamy mashed potatoes.

Since I’ve had guests around, I’ve  felt justified  in keeping on hand a few boxes of organic chocolate bars. They have no calories because they are organic. Like health care information a few lies accumulate along the way.

Repeat after me: ‘organic chocolate has no calories and you can safely eat five to ten small squares a day’. It should be called orgasmic chocolate. In fact, it’s your duty as a citizen of fat land to eat one of each flavor a day and there’re a lot of flavors.   I actually didn’t have any chocolate left because I’d eaten it all.  I think I only once gave a guest a square.

Exercise is beyond me at this point.  I think it’s sitting next to the public health care option in my internal debate.  The only exercise I get is going out to buy food.  Unfortunately, there are two supermarkets, a food hall and five pastry shops within a radius of three city blocks, so a five to ten minute walk could bring home millions of calories.  I don’t even mind carrying heavy bags as long as they contain food.

I was thrilled that health care passed even with the compromises.  But my own health care bill looms ahead.  Will it be passed? I don’t know.  On one side are friends who say you look better than expected.  Whatever that means. And others who say it’s time to pull yourself back together, to start putting on your wig carefully, as it looks like you put a bag on your head (and feels like that too),  lose some weight, get some new clothes and start exercising.

So life after cancer holds its challenges. For now I’m glad health care passed and I’m glad to be alive. Both were against the odds.

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Through the rabbit hole with cancer curmudgeon

Wednesday, March 17, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | Add a comment...

Just as I started reading  Alice in Wonderland my neck swelled up.  Do you think there’s a relationship?  It’s all seeming a bit surreal. By the end of the week,  between MRIs and whatever other tests are on this week’s menu, I should find out why my neck is swollen.  I think it will turn out to be ‘going down the rabbit hole’ that caused it.  Alice’s head grew out of proportion because of an illustrator, mine because of something as yet unknown.  I knew reading that book, yet again, was a big mistake.

I’m reading the annotated version because I’m a grown-up now.  It’s rather useless because I really don’t mind if Lewis Carroll was in love with Alice.  It would seem he was, but Alice’s mother put an end to it once she was of age,  not because of the age difference (20 years) but because of social class and money.  The rowing trips in Oxford, which triggered the story, were not allowed to advance into soirees. Lewis Carroll was not invited to Alice’s coming-out dance.

Cancer is like going down the rabbit hole. You never know what will happen next or whom you’ll meet along the way.  Like Alice, I’m curious yet frightened.  This week it’s a swollen neck, a few weeks ago my power port got twisted, several weeks before that I had  bacterial infections, and my  hair falls out along to way.  Alice’s adventure happened all in one day.  Fortunately, mine takes its time.

Sometimes I identify with the White Rabbit, running around worried that I may not be on time for my appointments.  Is the duchess my oncologist or another consultant who will ‘take my head off’ with the next test or bit of information?  Or is it the doctor who is the White Rabbit running from patient to patient worried that one of them will say ‘off with your head’?  But then, no one challenges doctors. Or do they?

And then there are these little bottles that keep showing up saying ‘drink me’.  We know about those don’t we?  The chemo and the anti-sickness pills and who knows what other bottles we are given.  Do they make us taller or smaller?

We have no idea, but we take them because the bottle is there and we want to change things.  As Alice says, “I know something interesting is sure to happen whenever I eat or drink anything: so I’ll just see what this bottle does.”

Who with chemo brain cannot relate to these immortal words?

“In my youth”, Father William replied to his son.

“I feared it might injure the brain;

But now that I’m perfectly sure I have none,

Why I do it again and again.”

After an MRI scan the other day I felt like Alice, curiouser and curiouser.  First, squinching into the tube , then opening up like a telescope in the eye of the machine.

“Now I’m opening up like the largest telescope that ever was! Goodbye, feet!”

At the Mad Hatter’s tea party Alice comments on time being wasted in riddles that have no answers.  How much time do we waste wondering whether we will ‘survive’ our  cancer?  That’s the riddle which none of us can answer accurately.  We might as well ask ‘Why is a raven like a writing desk’? Lewis Carroll asked for answers among his colleagues, we tend to go to google and the result, just as it was for Lewis Carroll, is that there are too many answers.

Then there is the moment when the pack of cards comes tumbling down on us.  ‘There is nothing to be afraid of’ says Alice, ‘ You are nothing but a pack of cards’.  And individually they are nothing.  But there are days when the packs of pills, bills, and doctors’ opinions come tumbling down on us and we want to believe they can do us no harm, but when they come at us all at once they have terrific impact. They might even take our heads off!

Finallly, there is the worry that we will blow out like a candle, which is the saddest ending and impossible to imagine.

‘First, however, she waited for a few minutes to see if she was going to shrink any further, she felt a little nervous about this; for it might end, you know,” said Alice to herself, “in my going out altogether like a candle. I wonder what I should be like then?”  And she tried to fancy what a flame of the candle looks like after the candle has blown out, for she could not remember having seen such a thing.’

Between medications, consultations, and operations, the whole cancer experience can sound like just another bit of nonsense.

Jabberwocky (Through the looking glass)

`Twas brillig, and the slithy toves

Did gyre and gimble in the wabe;

All mimsy were the borogoves,

And the mome raths outgrabe.

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My day at the races: Cancer treatment turns into a farce

Tuesday, March 9, 2010 in Decisions, delusions and befuddlement, medical care by admin | Add a comment...

A Day at the Races

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Doctors recommend doctors, who recommend tests and more tests, and drugs and more drugs, and at the end drive you crazy and you need to see a shrink. I feel I’ve set a record last week but I’m sure it is just business as usual for the medics.

My oncologist, also now a good friend, rushed to my flat thinking I had taken a turn for the worse.  She put me in the hospital for tests and antibiotics.  I was visited there by and ear, nose and throat specialist from another hospital. I saw a parade of  ‘on duty’ doctors, two speech therapists, several radiologists and a partridge in a pear tree.  The bird was most helpful, although the doctors did their best.

Out of hospital, I was free to see doctors in several clinics.  I ran to see a Professor for a swallowing test and then another expert for a lung function test and of course the chemo doctor.   Then the ENT doctor recommended a gastroenterologist (reflux) and my oncologist recommended a substitute doctor while she went to a game farm in South Africa, and I saw them all, too.

Because this was also the week my super port that delivers my chemo packed in, I stopped to see the nurse in charge of daycare. Natalie recommended I see a radiologist and a surgeon. The joke was that the surgeon who had put the port in thought I should have called him immediately when a huge black and blue mark erupted on my neck. Was he kidding? Would I want to worry a doctor? Did I want to see another doctor? I was sure it was markings from a necklace, not a leaking port.

My Monday at the races; Act one

And so the week began and I starred in a farce played out across the clinics of the world-famous Harley Street.  Think Groucho Marx when you think of me running from one clinic to another:  if I could have only kept my hospital gown on as I ran from doctor to doctor, clinic to clinic, the picture would be complete.

That morning I had two appointments that multiplied and became four and then six before the day was out.  I woke up at 6.30 with a start, fiddled with wig, took a bath and realized that I couldn’t find my car key.  I only have one because I lost the other.  I searched the flat unsuccessfully for the key and realized I had to run to my first appointment at 9.15. I actually do not run, I waddled to Harley Street and was nearly run over by a six-foot mom wheeling twins to nursery school.  She deserved a speeding ticket.  No one has patience at 8.30 in the morning.

Act two

I arrive safely and early at Harley Street clinic and go to reception.  Because of my voice (which is now speaking in whispers) and the fact that English is everyone’s second or third language, they cannot find my name or my doctor’s name.  When they do, they telephone him on his mobile, which does not work in the basement where radiology is planted.  Of course, I have no idea and I wait. My next appointment creeps up. It is at 10.40, about ten minutes walk down the street. I start to get nervous.

I’m then directed to the daycare centre where they will find the doctor and have him pick me up there.  It is now nearing 9.45 and I have my next appointment at the competing London Clinic.   I’m definitely nervous.

In the daycare centre, everyone is welcoming and the search for the doctor begins in earnest.  At 10.10 the assistant comes up and says the doctor has been waiting for me since 9.00.  I am told to change and he will do the procedure. I’m so nervous by now that it becomes apparent to everyone around me.   The Asian assistant suggests that I meditate, sit quietly in the examination room and relax my mind.  Not a chance.

It is 10.15 when the doctor finally arrives; I have not relaxed at all.  I accost him with my problem.  He, by contrast, has clearly done his meditation and in a relaxed way suggests that I change, go to the appointment at London Clinic and return to see him before lunch.  Great!  Problem solved.  No! The farce is just beginning.

Act 3

I change and do my ultra fast waddle to London Clinic where a huge cancer centre is being built, which makes the area unrecognizable so I can’t even find the front door.  In a panic, I run around the building and there it is, where it has always been, but looking incongruous among new buildings.  In a semi panic, I wait to see the doctor.  I conclude from my investigative peek at the receptionist’s diary that he books every 20 minutes and his next patient is early. I feel I’ll be able to return to Harley Street before noon.

Dr Anley is nothing if not thorough.  He asks simple questions that I can’t answer.  Luckily I brought some notes or we would have got nowhere. He seems to understand why I’m coughing continually and getting sick so often.  He suggests that I have a gastroendoscopy that afternoon at 2.30.  Since I haven’t eaten all day I’m in great shape for a full anesthetic.  It will take two hours and I will be finished at 4.30 in time to meet my friend at the Odeon Covent Garden to see Single Man at 6.00.  She is coming from afar and I want to see her.

Act 4

Back at Harley Street, I change and get my linogram.  That is almost like an ultrasound of the power port.  I can see my power port clearly: it looks like all the wires in my life, TV, phone, computer, electric blanket; twisted.  Nothing could pass through the tubing since it now has the bends.

The radiologist gives me a frightening lecture about what would happen next and ends by asking if I mind them going through the groin to fix it.  Do I mind? It is time for Grouch never mind Groucho Marx. I have no idea if I mind.  Because of my state and the way he asks I was certain that the groin meant vagina and I panic.  It took several days to figure out where the groin was located.

Act 5

Now I had two hours left and could not eat or drink. I decided to waddle home and look for the car key and take a power nap.  No car key, short power nap, and I waddle to London Clinic.  The anesthetic fully knocked me out and I slept for the whole procedure. I woke up wondering if he has done it yet. He gave me some more medication and said something about the anesthetic passing through my system quickly.  Not giving this remark a moment’s thought, I took a taxi to the cinema, arriving an hour and a half early.  I decided to go next door and shop at the amazing catering store for chefs.

Act 6

As I wandered through the store I embarked on an imaginary redo of my kitchen, but suddenly the anesthetic passed through me and I ran madly to the cinema toilet. I didn’t exactly make it.  So I cleaned up as best I could and took a taxi home to change my clothes.  I feel no shame revealing this because others with these side effects will understand.

I went back to my apartment, changed and returned to the cinema by taxi to see A Single Man.  I had just read the book and could not figure out how Tom Ford could ever make a film out of it.  He added some things that worked and others that didn’t.  My friend and I agreed that there were a few designer touches too many.  Changing his lady friend from a hippy chick to a designer-clad aristo was one too many for me.  I needed to go home after the film and my friend understood. (That’s why we call them friends.) What a day!

The good news was that I made chicken soup the day before. I needed it.

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Full moon; what keeps me up all night ?

Wednesday, March 3, 2010 in Decisions, delusions and befuddlement by admin | Add a comment...

Every few weeks I stay up most of one or two nights.  There are steroids that come along with chemo which guarantee insomnia, even with sleeping pills.

In this drowsy state, I listen to the World Service and click away on Amazon.com ordering books I don’t need or  hear an idea that keeps my brain churning until dawn.

Wonder woman finds a diet – no midnight snack allowed

Partly comatose at two in the morning I hear on the radio the author of the ‘I diet’.  Inspired, I order the book, deciding  that if I follow the rules, buy exactly the ‘right’ food, and eat on schedule, I will lose weight.  I never opened the book when it arrived.

What made me think that the ‘I’ diet which emphasizes a rigid routine would fit into my ‘everyday is a different side effect’ schedule?  I am lucky not only to find instant porridge and some milk in the fridge, but also to feel energetic enough to put it in the microwave.  I took the book to the charity shop.

A new cure for cancer, wake up and pay attention, it’s four in the morning

I woke with a start, and grabbed a pen and this is what I thought I heard.  There is a science convention taking place in California and one of the speakers is from a leading university (or was it a hospital?) who discovered a super blood test. For $5,000.00, they will test my blood sample and tell me if my chemo is working.  They’ll also let me know if cancer is still active in my body.  I caught something like, ‘much better than a CT/Pet Scan’.  I envision a team of Fed Ex couriers and an ambulance waiting to take my blood from my daycare center on a first class flight, arriving at this major research center within a few hours.

After the next two hours of sleep mixed with mind churning, I looked them up on the internet, wondering if my Fed Ex account was up to date and if they could get my sample there fast enough and where I might find $5000.00 immediately.

The reality turned out to be different.  It was in an experimental stage, they haven’t dealt with breast cancer yet.  Someday they hope to have blood tests in every clinic.  Oh well, another stone turned. Fortunately, there was no book to order because it no doubt would have been an expensive tome geared to specialists and would be off to the charity shop. Here is what I heard when half asleep.  I missed the ‘at the early stages’ part.

Personalized cancer treatment

‘Researchers in the US have developed a test which allows them to look for a specific genetic fingerprint of a cancer. They can then use this test to look for any residual traces of cancer after surgery for example, or to see how well a treatment like chemotherapy is working. This is still at the early stages, and needs expensive DNA reading equipment, but the hope is the price will fall quickly as that kit becomes more common. Jon Stewart speaks to Professor Victor Velculescu and Rebecca Leary from the Johns Hopkins Kimmel Cancer Centre in Baltimore. Their work is published in the journal Science.”

I remind myself, that once you get into the looking for cures routine, it takes over your life.  I’ve recently heard of a woman who spends ten hours every day doing just that and she is a stage one breast cancer victim.  (Her husband spends equal time investigating his own health problem not hers.)

I hit a winner

Sometimes you hit a winner.   I listened to a discussion about how people feel dropped after their last cancer treatment.  The moment when your oncologist says, ’you don’t have to come back for a month or six or even a year’ and you are left feeling a mixture of ‘well great, that’s over; but oh my God what is going to happen to me?’

Marisa C Weiss, MD and Ellen Weiss have written Living Well Beyond Breast Cancer, and although it didn’t exactly apply to me, because my Chemo had months to run, I was very glad I bought the book.  The authors limit the book by saying it is for people after breast cancer but I see it as an excellent book to have as reference at any time during the cancer journey.  It is well researched and they are particularly good on tests, fatigue, pain, memory and sex.

This book remained on my shelf.

Escaping reality

The search for more information about my condition is one thing, but using a book or an exciting idea to escape keeps me sane.  Lately I spent two weeks with the Tudors reading ‘Wolf Hall’.  It took me a while to get in to it but once there I didn’t want it to end.  I pictured my doctors riding horseback to my door and treating me by blood letting.  I want my daycare centre to have frescos and tapestries.  My wig would have hair piled high and a staff of handmaidens would tend to it and lay out my clothes.  I could dress up regally for my Doctor’s appointments.  That would get proper attention.

My book club is planning to read Alice in Wonderland and I hope I will fall down the rabbit hole into the land of sleep.


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