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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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Remission Perdition – Cancer Returns

Sunday, December 5, 2010 in Cancer and media, Decisions, delusions and befuddlement, Life after Cancer, after cancer, exercise, remission from cancer by admin | 2 comments

My worst fear – cancer returns

I would like to say that I’ve spent the last few months in a stress-free remission, climbing mountains for charity, but anyone who has been through this will know I am lying.  Just because you are in a remission doesn’t mean you are not stressed, exhausted and plain old sick.

I list the stages I went through during my five months of remission.

Reality sucks – first stage

I wondered why I didn’t feel elated.  I should have been over the moon, plotting my next trip to the five star resorts, spend it now! Instead I was doing what I had been doing over the last year or more, that is I was comatose, nauseous, vomiting, bowel problems, the usual. The treatments were finished but the side effects lingered on. I kept telling my body the treatments were over but it wouldn’t listen.  I was still seeing my oncologist, Dr Spittle, who kept encouraging me to get out of bed and start moving around before I forgot how to walk.

Escape – second stage

So doing my best to feel more positive, I signed up for a Pilates weekend at an expensive health resort.  I curmudgeoned the weekend away, and found it difficult to get to Pilates, much less do exercises.  I had a list of what I couldn’t do which included all the activities on offer, like hiking and aerobics, and I hated the food, and I growled at the other guests. My optimistic phase had become my over-optimistic phase and when I got home I went back to bed to rest up from my weekend.

Smart ass – third stage

I spend hours looking for the next cure and futilely try to keep one step ahead of my oncologist.  This stage began thirteen years ago when my first cancer sprouted and will continue until my last breath, with diminishing returns and diminishing enthusiasm. I won’t go into the details of my findings but let’s just say the new cancer doesn’t conform to anything I came up with in my research, so trips to Japan and the leading medical centers of the world are cancelled.  I should have gone when I had the chance, now I couldn’t do the traveling. I need to go to the website ‘cancer to order’ and ask them to send cancer that allows for extensive travel.

Getting it before it gets you – fourth stage

After five months I thought it was time to have fun.  My friend in Miami had air miles and a week off. This happened at the same time as the white truffle festival in Alba. It would be great to celebrate a weekend of gourmet food after months of nausea. It was a wonderful week for me, but I was tired and not my usual adventurous self. I had a feeling cancer was looming.

The final charge – fifth stage

I decided to make a huge effort to be a superwoman. I kept up acupuncture, went to Pilates four times a week, and signed up at a place called Bowskill Clinic for physical therapy and serious training. Everything was going well for about a month, which is a long time in stage 4 cancer remission.

Maybe I was stretching my luck,  signing up for 20 sessions at Pilates.  Just as I was about to ask for heavier weights so I could have a macho moment, my right arm folded.  It couldn’t lift an ounce.  My teacher looked at me with pity.  I looked at my arm in amazement.  What happened?

By the time I got home I was in severe pain.  I figured I had broken my arm; but how?

This was the first time I had a physical problem that I didn’t immediately think was to do with cancer.  I took every medication I could find in my apartment and nothing worked, not even the codeine pills I had left over from one of my cancer operations.  Not even my Adval smuggled from USA.

Sixth stage – no, seventh – Cancer returns

How did I know cancer was back?  Even after months of remission and seeing my oncologist every week. Dr Spittle has the manner of a psychoanalyst. She always greets me brightly, dressed as if she was greeting a great dignity rather than a woebegone patient; ‘Dr Walker’ she says, beckoning me into her consulting room.  She felt the lump on my throat and immediately concluded that I needed a biopsy and of course her instinct was right.  The tests showed cancer.

I’m writing this waiting to go into see Dr Spittle and start my treatment. I’ve had my Pet/CT scan and MRI. Cancer is back with a vengeance.  Good news it hasn’t gone to my vital organs; bad news the cancer can now be seen: lumps on my neck, bumps on my chest and a lifeless right arm. Cancer ought to at least stay out of sight.

I can think of many things to write about and will try to keep on to ‘restore sanity’.  This feels like a sequel;  ’The Revenge of the Cell”.  There will be more to come.

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Remission may mean submission

Tuesday, November 16, 2010 in Life after Cancer, after cancer, medical care, remission from cancer by admin | Add a comment...

It is cancer remission time and any intelligent person would be happy to have a break from the big ‘C’.  But here I am, planning my next attack on the enemy. That is not as dumb as it sounds because, for me, there has always been a next time, and I want to know where I can find the ‘cutting edge’ treatment and sign my name on the dotted line.

I showed up full of hope and wonder at an all day conference on The Future of Medicine put on by Intelligence Squared in London.   Prof. Bleddyn Jones spoke about curing cancer, not just getting rid of symptoms. Sounded good to me. With Stage 4 cancer no one ever uses the ‘c’ word ‘cure’ in conjunction with the other ‘c’ word ‘cancer’.   His first slide was a picture of the earliest airplane, an image that resonated with how I feel about radiation and chemo, which seem brutal and archaic treatments. Then he showed some photos of the latest supersonic jets and asked “Which would you rather fly in, the oldest technology or the newest?” I think of myself as super cool and cutting edge even though I’m 71 so I immediately chose to get on board the supersonic jet.

He went on to talk about particle therapy, a new form of radiation which targets the exact cancer cell and doesn’t involve any surrounding tissues. As he said, “It lands the dose on a dime with little, if any, collateral damage.”  I’m all right with that as long the targeting is not done by the twenty-somethings in Texas who have gained their experience aiming ‘drones’ at Pakistan and Afghanistan.  My faith was fading.

He went on to say that this treatment is fabulous for prostate cancer and as you can imagine the elderly male audience leaned forward and patted their checkbooks. Apparently everyone looking for research funds says that their treatment cures prostate cancer:  that’s where the money is since most men over 80 have prostate problems.

OK, what is the down side?  From my foggy understanding, the treatment involves walking into a cavernous room where the machine itself takes up acres of floor space;  they cost several fortunes to build).  There are ten machines in the US and a few in Japan and Germany.  Even if more machines were ordered, they would take years to build, by which time someone might have found another, better machine for the end of the 21st Century.

I spoke to my oncologist who was less than enthusiastic.  I wanted to sign up immediately and go on the waiting list for Japan. Who knows?  The day my name came up might be the day my cancer wakes up.

The next stop was the TED convention: this is the place to find all fascinating inventions and innovative ideas.

If you can pronounce the word Antiangiogenic, you are eligible for treatment.  Cutting it down to bare essentials, there are many blood vessels around the breast that feed cancer cells, and you need to stop the blood supply to stop feeding the cancer. These treatments aim at targeting the specific blood cells.  I was treated with an antiangiogenic therapy called ‘Avastin’ and was now in remission,  so I listened intently.  His question was  “…what we can be adding to our diet that would inhibit Angiogenisis?’

Can we eat to starve cancer? Wow, good words. I know how to eat. Now I can eat lots of fun food and stop the cancer.

Any list with chocolate on it is good with me. Don’t know about sea cucumbers.  Aren’t they the things you squish in the ocean?  The next day I topped my cereal with a mountain of berries.  My health insurance paid for my Avastin but not for my berry supply.  After a few weeks I forgot about this and went back to my normal diet.  Oprah seems to believe this diet will ‘cure’ cancer, but she is more positive then the researchers.

Then a friend turned me on to Pingyangmycin.  It fits nicely into my travel fantasies since it is a cure only available in China, which is fine by me. “I think it’s good that Chinese scientists are working on cancer drugs, because if my kid got cancer, I wouldn’t look at the label that says ‘made in China’” as Bill Gates said.

I don’t think it even is used on breast cancer patients but what the hell, China beckons and I like the name.  It sounds like a new ‘dim sum..’

Despite all the mad scientists and all their ideas, my conclusion is that I have to submit. Stage 4 breast cancer and I will have to fight it out with the old-fashioned treatments: chemotherapy and radiation. My oncologist, Dr Margaret Spittle, has done heroic work so far.  I know she would like to have more tricks up her sleeve but it is not to be.  That is why breast cancer needs tons more innovative research.

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Dead or alive; ask the FDA???

Monday, October 4, 2010 in Cancer and media, Decisions, delusions and befuddlement, after cancer, cancer prognosis, medical care, remission from cancer by admin | 1 comment

I woke up one morning and discovered via the leading newspapers that the FDA is withdrawing the cancer drug Avastin, the main focus of my cancer treatment.  It seems that women with stage 1V breast cancer do not live long after taking the drug and may die of its side effects.  Oh my god I thought, I must be dead.

I went immediately to my calendar to count the months between my last treatment and now.  I had finished treatment with Avastin and parataxal on the fifteenth of April and now it was five months later, I had just passed my live by date.  The news reported that I had six more months to live at best.  I’ve had Avastin and Paclitaxel together and according to the report my last few months have been easier but my life span has not been increased.

I must be having terrible side effects … or so it said in the news.  In actual fact, I feel better all the time, and most of my lasting side effects come from surgeries.  Although I still have a tiny bit of cancer, it is inactive.  Embarrassed by not living up to the newspaper statistics, I didn’t know where to put myself: was I dead, dying, or suffering silent but deathly side effects?

The FDA decided against Avestin as a treatment for Stage 1V breast cancer because it does not extend your life expectancy or add to your quality of life.  OK I understand that – officially I am dead or soon to be dead, and my improved life quality is imaginary.

So what about the 17,000 American women who are being treated at this very moment with Avastin and have just heard the news that it was being withdrawn?  The reason for this was supposedly nothing to do with the cost or politics.  Right, we all believe that, don’t we?

The last people we should feel sorry for are Roche, the drug company who lost a significant amount of money off their shares. But the point is that according to our congressmen their decisions have nothing to do with the cost of the drug, only its efficiency.  PLEASE  – the media has made sure that everyone knows that Avastin is expensive;  Congress would have to be idiots to disregard this information.  But of course politics doesn’t come in to it.  OH NO?

When have I ever asked the government of the USA (where I was born) or the UK (where I now live) what drug I should take?  I get led all over the planet by media proposing cancer cures but the government now wants to have its say. I think if my medical treatment is left to this cumbersome bureaucracy I should take an overdose and be done with it. Reading the scope of responsibility for the Federal Drug Administration described in wikipedia is enough to make you shudder.

The argument pro the FDA decision to withdraw the drug says that patients (women) are desperate to do anything to save them from dying from breast cancer.  They would even have the government pay – or self pay – for treatment that extends life for a couple of months.  OH MY we are naughty, naughty women.

Since American women may now have to pay for their own Avastin, they will have to ask themselves if a few months of life is worth it.  I think about how much my illness has cost, and I wonder.  It is a horrible question to have to ask yourself, and it is a question only answered in TV – Hollywood fiction land.  ‘She was alive to see her daughter married.’   Whether you should take the drug or not is as difficult to answer as ‘What is life?’ or ‘What happens when we die?’.  All the medical ethics courses in the world can’t answer that question for us, nor can a government committee.

Just as I was made certain that death was inevitable; and then, guess what?

Reuters:  WASHINGTON – The U.S. Food and Drug Administration Friday (Sept 17) delayed a decision involving the use of Roche Holding AG (RHHBY, ROG.VX)’s top-selling cancer drug Avastin in advanced breast cancer.

Roche’s Genentech unit, which sells Avastin in the U.S., said the drug’s review was extended by three months to Dec. 17. The company said it submitted additional information to the agency, but wouldn’t provide details.  The FDA usually follows the advice of its panels of nonmedical experts, but isn’t required to do so.

Since the July panel decision, the FDA has been bombarded with letters and petitions from women, some congressional lawmakers, and groups such as Susan G. Komen for the Cure and the Ovarian Cancer National Alliance. In a recent letter to the FDA, the cancer groups urged the agency to allow use of Avastin for breast cancer because the drug has been shown to work well in some patients.

OK I get it, I may not be dead yet.  I have got to the point where I am uncomfortable in purgatory.  PLEASE let them make up their minds.  Thank goodness my oncologist the renowned Dr Margaret Spittle doesn’t have to consult a committee every time she makes a decision about my care.

Meanwhile, let’s consider the financial aspect.

The Avastin (which no doubt put my cancer on hold) was according to the FDA a waste of money.

Readers of my blog, Cancer Curmudgeon, know I fantasize about going around the world on a jet plane.  It only takes a month and without any drugs at all I might have still lived that month. Avastin is probably at least a contributing reason I am still alive and my insurance company wisely covered this medication; but they will not cover the next part of my plan, the travelling.

Darn! I could have saved someone some money.

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Did Crazy wisdom finish off my cancer?

Friday, July 2, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | 1 comment

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Whatever has worked, whether hocus pocus or not, my cancer has been put into a deep, hypnotic sleep – please don’t wake it.

A month ago I had an MRI scan to find out if the treatment for stage 4 breast cancer had worked.  After operations, radiation and chemo, the scan showed that a lot of my cancer had gone, but there remained a few cancer cells which were most likely inoperable and difficult to radiate because they were embedded in nerve tissue.

After fifteen years with cancers coming and going, I knew the rubric.  With the prospect of ‘no more treatment’, it was time to check on my will and make funeral arrangements.  I visited my surgeon and tried to cheer up my oncologist and friends, but in my heart I thought I knew.  Further surgery was unlikely and radiation with a cyber knife, which was mentioned, was one new fangled invention too many.

My oncologist and surgeon recommended a CT/PET scan. Too optimistic, I thought. In my negative frame of mind I thought only fleetingly about the effects of radiation from the scan (see last blog) – I wasn’t going to be around anyway.

But the hocus pocus machine must have magically transformed my negative energy into positive. My oncologist was disbelieving when she called to say my cancer was inactive.  I ran to her office in fear she might have got it wrong.  Neither she nor I believe in magic, and she methodically checked with the technicians and pathologist to see if the machine was broken on the day or if the pathologist who had read the scan had forgot his glasses.  All confirmed to her that the cancer was inactive.  I think we were both in shock.

I began to tell my friends and they all asked, ‘Why? What had happened between the MRI and the PET/CT scan?’  The answer is, I have no idea.

Please cast your vote.  You can put money on any or all of the following:

My negative attitude

During that time I was reading a book called ‘Final Exit’, and listening on line to lectures on death from the philosophy department at Yale University.  Being negative always puts me in a good mood.

Moxibustion

Who cares if it works or not?   It is such a great word.

I started this around the time of the first scan.   Walking up the circular stairs of the Kite clinic on New Bond Street felt like going to a high price cosmetic surgery clinic.  Gerard Kite uses a form of acupuncture in which magic moxi is made into heated candles and are placed one at a time on various acupuncture points.  After the moxi is in place, a few needles follow, which penetrate the skin and feel a bit painful for a second or two.  The whole thing takes only a few minutes but it did give me energy and who knows what else.  I had about ten sessions between scans. I had put off going because the expense seemed too high but I decided the hell with the money, I wasn’t going to take it with me.  I think it had done me a world of good.

The magic substance – Orgonite

My friend Martin Sexton, an artist, put Orgonite all over my bedroom.  He takes this very seriously.  It is a substance devised by Wilhelm Reich, a psychiatrist who worked with Freud until he went off in his own mad direction.  He believed that he could harness the energy of the orgasm in a material made of resin, white quartz, rose quartz, and aluminum.  He made cylindrical tablets that were full of magic properties.

Martin’s tablets were made in the shape of Silbury Hill. He bathed the tablets in Chalice Well at Glastonbury, in both the red spring and the white spring;  shallow buried and retrieved them on Glastonbury Tor; placed them at the other sacred places of Wyvern Hill, Chalice Hill, Gog Magog Oaks, and Stonehenge, and then finally placed them on the erect phallus of the Cerne Abbas Giant.

They have sat on the windowsill near my bed during the time between scans and who knows?

The summer solstice

The PET scan did happen on the day of the solstice; maybe the druids intervened?

Prayers for the atheist

I do appreciate it when friends and people I don’t even know send me prayers.  I do have a close friend in Australia who is a minister for the Church of England. He said he wanted to pray for me but he needed me to be specific.  What exactly did I want him to pray for?  I hope I said something relevant because I like the idea of being specific.

The shaman – the doctors

To give them their due, the doctors worked hard to get these results.  At times their work seems more on the side of magic than science.  Dr Margaret Spittle, my oncologist for fifteen years, planned my treatment with the aim to get rid of the cancer (a stage 3 solution) rather than watch it grow and take over (stage 4).  She planned the operations, radiation treatments and chemotherapy.  I can’t say that I always had faith or thought positive things about her.  It has been a difficult two years.

The fight with cancer is no doubt not over, but for now,

Ssh, Ssh, the baby is sleeping…

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