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My surreal morphine world

Thursday, December 16, 2010 in Decisions, delusions and befuddlement, after cancer by admin | 1 comment

Mumbling morphine Marge fights malignant cancer cell Mafia

I woke at eight,  in a panic.  Seven is the hour when I must arm myself with morphine to fight the mega cell mafia attacking my right shoulder, threatening acute pain.

After a few weeks on morphine my thoughts go back to the time I said I would never take it because I didn’t want hallucinations.  Now I think ‘What is a few hallucinations between friends?’  and I am adjusting to a surreal, eccentric way of life.

I take my magic tablets and wander out in the cold to see James Turrell’s art installation at Gagosian Gallery.  Nothing to do with cancer;  just an art piece;  how wrong.

In the middle of the gallery Turrell had built a space ship which was to be experienced like an MRI scan.  There was a technician, dressed in a white coat and with serious glasses. She checked in each candidate for the machine, and just like a real technician she asked were they pregnant, epileptic, subject to migraines  – the usual.  I told her I was on morphine and receiving radiotherapy.  Since her everyday job was gallery assistant and she was dressed in costume she probably saw before her just an old lady who was entering into the action and having her on.  She gave me the release to sign and in I went.

I lay on a bed and was rolled inside this bubble, all alone, to see a changing light show of gorgeous color and strange sounds that had been taken from the machines and transformed into a modern composition.  It was very sixties and psychedelic.

After a few minutes, aided by the morphine, I had no idea whether the color was emitted by the machine or was coming from my own surreal head.  Then just as I was thinking of pushing the eject button I saw an old woman with gray hair and black glasses reaching into the machine and ushering me out.  NOW that was a pure hallucination.  Immediately after I came out I told the serious group of art critics, writers and gallerygoers what I had seen.  I can’t imagine what they made of it, but it’s not so unusual for me,  on a day under morphine.

It only gets stranger.

I am twitching around trying to sleep when the fire alarm in the building went off and Martin, my friend, came blazing in to my bedroom sure that I was burning down the bedroom with my WMD, in other words my iPad, Mac, iPhone and several electric pads, all plugged into a floor outlet where I am sure to spill hot tea.

Not me this time.  This time it was the dental office on the ground floor.  A cheap floor light fitting had caught fire.  The smell of plastic percolated through the building.  The tenants appeared in 1-degree weather dressed in bathrobes to wait in a seriously expensive part of London, W1, for the firemen, ambulance and police cars which were to arrive after about 30 minutes.  It was the perfect ending to a surreal day and I didn’t hallucinate the burning plastic light fixtures that caused the blaze or the good-looking firemen.

I'm the weirdo coming out of the building dressed in nightclothes plus who knows

It will be an Xmas unlike all others. Or will it?  I’ll still be separating fact from fiction in a surreal world.

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Doing the cancer-wait-wait … and more wait

Monday, June 21, 2010 in Decisions, delusions and befuddlement, Uncategorized, cancer prognosis, medical care by admin | Add a comment...

Everyone talks about the traumas of the cancer treatment itself, but let’s take a few minutes to think about the trauma of waiting… think World Cup results being postponed for a week after you have watched a game under tension; think having to wait six months for a letter saying you have passed or failed your driving test; think waiting for a kettle to boil; and then you will understand the last few weeks of what is known as my life with the c. word.

I have done the rounds, the surgery, the radiation and chemo. Yet the MRI has shown the cancer cells march on fiercely holding on to a few centimeters of my body’s territory.  Their tenacious nerve fibers are buried somewhere in my chest and under my arm.  Just a little over one centimeter across,  the size of a healthy leech, they no doubt learned their methods in the primeval rain forests where leeches and cancer cells must have marched together in a war against a stone age population.  Perhaps the cancer cells survived by burying themselves deep in bodies, while the leeches hung on to the skins of their victims.  If only we could burn the cancer cells off like we can leeches.

Off track again, the present wait is about doctors wondering whether any further treatment is possible.  Can the cancer cells be dislodged from the nerves by surgery without causing a huge amount of damage, or could a cyber knife deftly radiate just the cancer cells.  In the last two years (the length of this last bout) I have mounted an attack against cancer with state of the art treatment. It is difficult to imagine a world where there is no more treatment available.  It feels like the troops are pulling out of the cancer war leaving the native (me) at huge risk.

I wait it out. Two more days until the PET scam (scan/scam. Freudian slip).  Just to remind ourselves, a PET scan is a radioactive examination where  a strange potion is injected and you can’t go near children for a few days.  I am slightly freaked out by the fact that my wait is blamed on the intergalactic machine, which is broken, and I am convinced that I will be the patient testing the repair.  You know the feeling, when you drive your car away from the repair shop only to turn around and drive it back when the strange noise recurs.  My worst thought is that it will develop a radiation leak.  I had all these paranoid worries when I went to sleep last night only to wake up this morning to read,  in an online article in the New York Times ['Americans get Most Medical Radiation in the World']:

“… Too much radiation raises the risk of cancer. That risk is growing because people in everyday situations are getting imaging tests done far too often.  [...]

Questions to ask about radiation scans:

–Is it truly needed? How will it change my care?

–Have you or another doctor done this test on me before?

–Are there alternatives like ultrasound or MRI?

–How many scans will be done? Could one or two be enough?

–Will the dose be adjusted for my gender, age and size? Will lead shields be used to keep radiation away from places it can do harm?

–Do you have a financial stake in the machines that will be used?

–Can I have a copy of the image and information on the dose?

[Dr Fred] Mettler suggests bringing a blank CD or thumb drive with you.

”You should have all of your stuff digitally on something,” he said. ”I keep mine on my laptop.””

I love these questions because two weeks ago when I had my MRI I was bombarded with irrelevant questions like ‘Are you pregnant?’  Now I have questions of my own.  Yes, many doctors have done many tests.  How many are you allowed?  At 70 I’m sure I’ve had too many.  My favorite in the above list is: “Do you have a financial stake in the machine?”  I’ll ask the first technician I see and I bet they say, “my job depends on it.”

I would love to bring a CD with me and get a recording of my examination.  It could record the technicians discussing their social lives or me lying in a tube with Frank Sinatra as background music.  But as to regulating the dose of radiation, I think I’m the last person who should have a say in it.  I barely know how many gallons of petrol I need to fill my car or how many kilos of anything feed four people.

When I finally got to the scan I needed to lie for an hour on an examination bed and wait for the radioactive stuff to go through my body.  I wasn’t allowed to read because engaging my eyes meant I failed the exam.

My ears were attacked by an hour of Frank Sinatra which was particularly irritating because I was trying to visualize myself laying on a sandy beach and drifting off to sleep.

My ‘funny bone’ has developed a cancer of its own.   My sense of humor gets darker and darker.  My friend asked if I could go to a concert in about a month and the response, “If it doesn’t interfere with my funeral” keeps popping into my mind.

Tomorrow the wait will be over.  My voice has come back and my hair is looking a bit better, I have more energy and my friends say that I’m looking well.  I walked out of my flat today and a very serious looking  Indian sikh stopped me and said, “you have a lucky face.  This will be a good month for you.” Moments like this make me love London – and who knows he may be right.

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Die with dignity or be tripped up on the way

Thursday, April 8, 2010 in Decisions, delusions and befuddlement, medical care by admin | Add a comment...

Will you be able to choose your own ending?

There is nothing worse then a moral conundrum and this curmudgeon was caught off guard.  A month ago I thought I was going to die.  I was rushed into hospital with what turned out to be a war with antibiotics, not death.  I was exhausted, and could only think of planning a funeral.

Many antibiotics later (it was bacterial infections; nothing to die about), I had a MRI scan.  It showed that the chemo is working against the stage four cancer, and I may be around a while.  But the experience got me tuned in to the arguments in the media about choosing how to die versus having hospital administration committees decide for me.

I agree with the death with dignity approach – the right to choose – but needed the details before I took sides in the debate.

One of the hotly debated points is that you could at the last minute change your mind and decide not to have your life support removed or not to visit Switzerland.  If I’d been a paid up member with a ‘death with dignity’ plan might I have made phone calls, organized and gone to a place where it was legal so I could exercise my rights and carried out my plan?  No way!  I live in London and don’t even have the energy to get out of bed. In fact, being at death’s door, I can’t imagine feeling well enough to get myself to Switzerland (the only place where it’s legal for foreigners).

Like many great ideas, this one might be difficult to orchestrate.  Not so much that I might change my philosophy, but the state of my health might make it impossiible.

How do you die with dignity?

Do you picture a room full of flowers, your favourite music, your loved ones standing by, waiting to hear your last words?  Right now I like the stories of people who go for a final meal and can finally eat whatever they want, but that’s because I’m on a diet.

After witnessing several deaths I’m not sure what works.  My father, who in his 90s passed away at home in his own bed, decided as a last gesture to line up his shoes.  He wearily asked which he should wear to his next meeting. Then he did his exercises.  One, two, three, four… He could barely speak.

A few months ago, I was at a large UK teaching hospital with a friend who had fought cancer and signed his living will.  (The debate in the UK is whether that is enough or whether a committee should decide when have life support removed.)  The morphine, on offer after life support was removed, took about four hours to work.  From the outside looking in, he didn’t seem in pain.

I hate morphine (didn’t mind getting high in the seventies but now I don’t want to ‘space out’.  Why can’t we have a drink or a shot of something in hospital or home and be done with it?

Why can’t we have what we want?

What are the alternatives?  I sent an email to my cousin, Dr Faye Girsh,  who was off to Colorado to speak on ‘the right to die’.  I asked her about alternatives.

Apparenty, I’m eligible for Dignitas, the non-profit organization outside of Zurich that takes foreigners.  After a lengthy interview, clients leave and come back when they are ready to die.

Although I read that it is difficult to find apartments whose owners are willing to have people dying in them regularly.  Who can blame them?

They offer death by medication (details available on Wikipedia) or with a facemask and helium.  The former takes about 25 minutes. I, personally, don’t like masks.  Your family or friends wait outside while Dignitas video the death.  The police then come over and the body is taken for autopsy.  For an extra fee, they can arrange a funeral or cremation and send your family the ashes.

The cost is somewhere around $8000.00 plus air fares.  You need to fill in forms and have interviews.  I’m too tired after last chemo to leave now and at death’s door I doubt that I’ll have the energy.

So where is all this going to end?

The short answer is that like most people I have no idea.  I could get run over by a car; conundrum solved.  I believe that we all should have a choice, if we care to (and I mean that ‘if’).  The UK idea to have a hospital committee decide whether to detach me from life support sounds terrible.  In the UK we call it the ‘nanny state’.  I want my living will honored.  I want as many options as possible even if I’m too sick to take up my choices.

Link for information:

www.FinalExit.org

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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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A Valentine’s Day resolution: Dress up for the Hospital

Saturday, February 6, 2010 in Decisions, delusions and befuddlement, Uncategorized, medical care by admin | Add a comment...

DSC04352

Would you give this woman drugs? I didn't dress for chemo. I got turned away.

I had a revelation today and a resolution followed. I have to look well to have well-person treatment from the hospital staff.  I’m slow on the uptake. It took me two years into my three-year PhD to realize that my ‘hippy’ long dirty hair and jeans were not speeding up my degree in Education.  In this case my sleep wear is morphing into my ‘going out’ clothes and it is not getting me anywhere medically. Today, just as in school, I decided to turn over a new leaf.  Let’s call it a belated New Year’s resolution. I have to pay attention to my grooming, even though it may compromise  my  first priniciple, ‘be comfortable’ . Maybe I’ve taken this too far because there is a blur between my sleep wear and my going ‘out’ clothes.

I woke up yesterday during chemo. to the reality of the situation that how you look gives hospital staff from cleaners to consultants a clue to your health and if they believe you are seriously ill, they treat you accordingly, which may mean they don’t treat you at all or that your treatment takes longer, while they check and check and check. This is how I arrived for chemo for two days running. I wore some comfy trousers that I could have easily slept in. (I’m not admitting whether I did or not) My hair has fallen out to the extent that I should wear my wig or a proper scarf, but, what the hell, it’s 9.00 and I’ve not slept well, why not throw my long wool everyday scarf and forget it.  No makeup. Voice still an even dimmer whisper, if that is possible.  And, on my first visit, I arrive, limping, and arriving on the wrong day giving more proof that my mental state was deteriorating, too. Usually they would have scrambled around and given me my chemo a day early, especially since the blood tests had been done and were all right. They looked sideways at each other and said, ” I didn’t look well”, and they should postpone treatment until they spoke to my oncologist at the end of the day.  I still didn’t get it, but based on how I looked how could they think otherwise? My oncologist has dropped subtle hints’ that dressing up a bit might make me feel better. (We are very close friends; she is allowed to say that). Later that day she sent an emergency text saying that she would do a ‘house call’.  It was the time I was having my toes taken care of so that I wouldn’t limp, and I couldn’t make the meeting. She told them that chemo could be scheduled for the morning if I was up to it.  She understood that if I was out of bed, I was just looking my normal messy self and in this case, it was nothing to worry about.

Not yet  ‘getting the message,’ I repeated my performance of day one, sloppy trousers, same top, same, same.  The staff again looked worried.  “Have I seen my oncologist recently?”” I walk in and a friend who I hadn’t seen in daycare before came up and had to remind me who she was.  I’m terrible when I meet someone out of context.  She .too. was here for chemo. She looked amazing.  Well dressed, hair perfect, make-up also natural and beautiful, and neat, neat, neat.    She has very serious cancer and has not been too long out of a long hospital stay. I know she is a very private person and doesn’t discuss her cancer. She conceals it well.  She sat down and got her chemo within a few minutes.

While the staff dithered about the safety of giving me chemo, I waited.  I had to wait for the doctor in charge to give his OK and then wait as the nurse tried to puncture my tired veins looking for blood, so that the tests could be repeated to make sure. She tried four times and then called the senior nurse.  All this fuss to send yet another blood sample away for tests. This added an extra two hours to my four-hour stint.   Still I didn’t get it.

Another woman who has had a really tough time with cancer came in and sat across from me with her lovely husband.  She also looked well-groomed and attractive.  She moved through her treatment without problems. This is when a light bulb went on in my head, I GOT IT!  No one wanted to take the responsibility of giving a disheveled, sick-looking person chemo. If I were as sick as looked, I might collapse or whatever.  The senior nurse came over and apologized for having me wait but said she wanted to be very careful because I didn’t look well, although the tests were all right. At that moment I made my resolution. My resolution is to dress ‘up’ for medical procedures and meetings with doctors. I will spend at least a half-hour dressing.  w

What I will do with this time, it now take five minutes, but I will try.  Finding earrings will take about ten minutes of that time, locating my lipsticks aother  five minutes. Motivation: I can cut my chemo to four hours from six hours. It is the first week of Feb. I wonder if I’ll keep this resolution until March. I do love my comfy trousers and I hate ‘dressing in the morning’ when I actually don’t feel up to much. Will I find a middle way? . .

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