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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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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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A dangerous cancer: the effect of a narcissistic person on Haiti’s injured children

Saturday, February 13, 2010 in medical care by admin | Add a comment...

The plight of a baby lying in wait for a piece of paper that will let her travel for an operation in London has captured my attention over the last weeks.   Last night’s Channel 4 news (Jon Snow and team in Haiti) confirmed a fact that I only suspected but needed to confirm in order to write about this.  The arrest of Laura Silsby and her ten conspirators has led the Haitian officials to take a long and hard view of every baby leaving Haiti for medical care. I don’t think the Haitians can be blamed for this.  The minister of health and his department are overworked and worried.  The experts they needed could not be found.  For example they spent days looking for and not finding a Haitian neurosurgeon to approve the operation for baby Landina.

When I first saw baby Landina on the news she affected me immediately.  She had bonded with her doctor (one could see from eye contact) and her caretaker.  She had enormous spirit. Having been saved from the rubble, an arm amputated and several operations on her brain, she still managed to keep going.  Seeing her last night again, it became apparent that she was not doing as well and hours were ticking away. Even with the papers signed with the help of the Channel four news team (UK), it would take two more days to get her moving. She had five left to get to this operation.

I think this delay is, in large part, because of Laura Silsby, a very disturbed narcissistic person.  It is extraordinary that one person’s very serious mental problems can have an impact on this baby and other children who are in need of operations not available in Haiti.  The evidence for her disorder is abundant.  She is in debt in Idaho and yet has said on various occasions that she is building a resort in the Dominican Republic.  The contractor she mentioned said that he had sold her a house years ago and had not heard of her since.  It is a money making scheme, her fantasy and she took advantage of the earthquake to put it into action.  As I understand it, the resort was going to consist of an orphanage for the adoptive Haitian children, a hotel for adopting parents who would pay to stay in the hotel for three months, deciding whether to adopt of not and a compound of restaurants and shops. Laura Silsby of the New Life Children’s Refuge told Channel 4 News: “We may have been deceived by someone coming to us and saying: ‘The parents are dead. Please take our child.’ Because we’re taking them to a very… I mean, we have a beautiful place for them to go, and I can see how parents that were desperate, that had lost their homes, lost their jobs, would want possibly to have their child go to a better place.”

No one has seen the ‘better place’, When further questioned, she said she had rented a hotel for the Haitian children in the Dominican Republic until the resort was built.  Of course, all these statements are lies.  She has no money and her church is poor.  I personally doubt that any hotel or resort in the DR would welcome Haitian children during the height of the tourist season or at any other time. The orphans would attend schools and hospitals in the DR which is not a rich country.  Having lived in Miami, and visited the DR and Haiti, I need to say that Haitians are on the bottom of  a very high social structure. I’m convinced that the Dominican Republic is helping in any way they can during this catastrophe so that conditions in Haiti stabilize and they don’t have a rush of immigrants coming over the border.

Silsby also lied to every parent and child she abducted.  I doubt if she actually paid parents for children, but I have no proof.  Thirty-one children even at one hundred dollars apiece add up to more then the reported donations by her church.   The children thought they were going to summer camp, college and other fantasies that she told the parents. Five of the parents testified in the groups’ trial that they were unable to feed their children and hoped for a better life for them. I assume they were paid expenses to witness the case and perhaps a bit more for testimony. The so-called ‘missionaries’ were given a speedy trial by a Haitian judicial system said in reports to be non functional. Luckily, as Jon Snow pointed out, they weren’t Arabs in a US or UK jail.

On the trip to the border, Laura Silsby and her crew apparently gave the children no water and left them in the back of a van.  They arrived at the orphanage in a terrible state, so much for the promised land.

Her ‘team’ consisted in part of her nanny. (I don’t know who is caring for her two children in Idaho), a man with two teenagers and a wife and a group of men who I personally would not like to run into on an Idaho street at night if I were a Haitian.  I admit to knowing nothing about them personally.  One suspects that all these people thought they were in on a money making scheme. One wife said knowingly when her husband gets home they will sort out who said what to whom. She was under the impression that he wanted ‘to observe the earthquake’.

What brings tears to my eyes is the danger this woman’s pathological narcissistic personality has brought on the injured babies and children of the Haitian earthquake. The injured babies and children she will never meet. It is impossible to locate most if not all of their parents (buried in the debris) and understandably the Haitians want to make sure no other children are taken criminally from Haiti. They will bring them up in extended families.  It is encouraging when one person can make a positive difference but this case is a disaster.

I have sympathy for the people of Haiti.  They need to find resources to feed and house one million of people.  The so called ‘nonworking’ judicial system was able to give ‘the missionaries’ a fair and speedy hearing and a jail to live in with three squares a day and plumbing and two court assigned lawyers. (Laura fired the first) The detainees complain about heat and mosquito bites.  Getting rid of Laura Silsby and her crew seems a good idea. They leave 31 children in an orphanage with no clear way of returning them to parents, who might not want them back. I hope they face the fact that they have done no good in Haiti and have left it a worse place for their misguided if not criminal intrusion.  If they can face this with all the spin that will be placed on the story in their home town (most provided by Laura Silsby) they will have learned a valuable lesson. Laura Silsby and her crew have grown a much more serious cancer than my individual cancer which next to this seems unimportant.  Her cancer has spread to every sick child and injured child that seeks to leave Haiti for treatment.  Fundamentalism of course surrounds this case, but Laura Sisby is using fundamentalism and the tragedy of the earthquake in the service of her narcissism. My prediction is that she will never have insight about the damage she has done and she will continue with her self-serving schemes.  It is hoped that people will realize that there is a lot of very good work being done in Haiti and continue to give to the effort.  This child and others are being helped by Oxfam, Unicef,  Medicins Sans Frontiers, and to end Latina’s story with good news.

From Channel Four news (London)

Landina arrived in London this morning, where she was taken to Great Ormond Street children’s hospital for medical assessment on her head injuries.

Her journey had begun last night in the Haitian capital Port-au-Prince following weeks of bureaucratic delays.

Channel 4 News travelled with British surgeon David Nott, working as a volunteer in Haiti, who has looked after the child for two weeks since her arrival at the Medecins sans Frontieres hospital.

The baby’s mother is missing, presumed dead, and has no known family.

At the Santo Domingo airport, Landina’s new passport was stamped and she was checked by a nurse before being put on a British Airways flight bound to the UK to become the only Haitian child to be medically evacuated to Britain.

The charity, Facing the World, had invited her to stay in London for six to 12 months.

After she has recovered from surgery, she will return to Haiti.

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The Hospital: A kvetcher’s paradise

Sunday, January 31, 2010 in medical care by admin | Add a comment...

image1The next person who says, ‘you look tired’ I will personally murder.  Or course I look tired.  I’ve been in this hospital for a week with three blood infections that have names I didn’t write down for fear I’ll look them up on The Iuternet and scare myself to death.  My living will doesn’t cover throwing my hands up in vain and shouting OUH VEY .  When I last checked this was not a beauty farm although it is the Harley Street Clinic and in the area there are hundreds of Botox and plastic surgeons.  I’d give anything to be with one of them, but I’m here, looking tired. I’ve been on three different antibiotics and have a nebulizer, oxygen, and whatever is trying to make me look less tired and not succeeding.  Also my hair is falling out in handfuls, slowly and torturously.  Look tired, no, I look like a wreck going somewhere to happen.

The hospital is a kvetcher’s paradise.  If you can’t find anything to kvetch about here you should give up you rights to complain.  From the moment I put my foot in the door things to complain about flowed.  No bath in my first bedroom and a large hospital chair sat in the middle of the shower.  The first thing the officious nurse did was to rummage through my suitcase and take my drugs.  Then the doctor on call ‘borrowed’ my drug list and went off with it never to be seen again; well it was only the first hour of the first night.

I won’t go on day by day, but one can complain in general.

1.     Being woke up at 5 in the morning for antibiotics.

2.     Having your blood pressure taken every hour or two. Does it change that much? This is the one I can’t understand. I think the robotics people at Imperial College London are working on a robot to do this. Hurry is all I can say.

3.     Nurses that make the blood pressure cuff so tight you could easily scream and defiantly should scream.

4.      Nurses who forgot half your medication and disagree when you tell them they’ve forgot.

5.     Never enough blankets.  Is this a developing country? Asking for an extra thin blanket is never easy especially when you really want two extra blankets.

6.     Pills you are supposed to take left in small containers next to your bed and you come across them the next day.

7.     Twenty five to thirty year olds who trained to be speech therapists and physical therapists by memorizing the book.  They look like something out of “Mad Men/,” dressed to the height of office protocol.  High heels, sensible dress (translate, boring) or suit, make up perfect, hair perfect you already hate them and they haven’t opened their mouth yet.  One such speech therapist and I are going to come to serious blows.  Instead of admitting that she never did a proper swallowing assessment, she surreptitiously showed up during lunch the next day, no doubt to watch me swallow.  She kept insisting that I was perfectly all right.  Fortunately, I have a more experienced speech therapist with some authority who sorted everyone out in no uncertain terms.  I won’t go in to details.

8.     Nebulizers that go over your nose and mouth are to be kvetched about.  They are never given at the right time.  The noise interferes with TV; it wakes you up just as you are drifting off, and greets you at 6.30 in the morning.  AND nurses leave it on and say they will be back in ten minutes.  Ha.  They never come back unless you call them and it is difficult to figure out when it is finished.  After several days I asked how you turn it off. Now after ten minutes, off it goes, I have to get out of bed to do it but it is worth it and after ten minutes of whirring I’m fully awake anyway. I tried to close it off a few days later and it exploded. (Maybe best I keep my hands off of it.)

9.      Now this is personal.  Disposable underpants.  The ones they supply in the hospital are diapers.  I don’t know how long it is since you’ve diapered anyone, but pampers are a long way back in my history. I was faced with a complex diaper, half asleep, and wondering when I could lie down again. I found a friend who found some proper disposable underpants that look like they are supposed to look.

10.  Within sight I have Wolf Hall (Hilary Mantel) with only 100 pages left to read and about 10 other books, DVD’s and my blog to write and I’ve felt too tired to do anything.  It is worth complaining when you have no other symptoms besides tiredness.  There is nothing to get your kvetch into like vomiting (well you know the list).

Now that I’ve had my Kvetch I feel better,  Of course the staff here is very good and the care excellent, but I kvetch to visitors and to myself mostly.  I think it is therapeutic. Since I have no voice only a whisper and English is not a big first language around here, I don’t do any real damage.

Anyway, Chemo is cancelled and I’ll be here another week. Today is the first day I’ve felt able to blog, so I will try to keep it up.

"Have any cards for someone who's just kvetching?"

"Have any cards for someone who's just kvetching?"

Another Kvetch, they didn’t find my Advil PM supply.  Like any good American I managed to get Advil brought in (it is illegal in the UK) and NO ONE WILL EVER GET MY ADVIL. (Don’t worry about addiction; it is just my security blanket.)

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Optimist, pessimist, internetist: which ear is listening?

Saturday, January 9, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | 1 comment

rman5890lWhen it comes to a reality check on cancer, doctors can’t or won’t tell you what is happening. You have to search for it. Recently, I’ve been researching my medical situation.  My oncologist is very positive and says things like, ‘We hope you will be around for many more years’.  My surgeon takes another view. He says, “You’ve lived 13 years with cancer, you should have been dead in six’.  There’s only one place to go, the internet.  There you can find the statistics and also become fatally confused.

One way to find out what stage of cancer you have is to look at websites and then check with your oncologist. I checked on the internet and then with her. I’m at stage 4, but she’s treating it like stage 3C, operative.

If you’re an optimist, the statistic that only 20% of the population with stage 4 cancer live for five years, will make you happy, assured that you are one of the 20%.  So you look a bit further.  What about people who have stage 3C or 4 who receive taxols and Avastin (a new drug which is delivered like chemo, but is not chemo)? People who take these drugs, and I’m one of them, get another few months.  If you’re an optimist you’re thinking,’ great, maybe I’ll defy the stats and have four more months’’.  And I take Amimidex –another month?

So it’s back to checking with the doctors.  If you think you’re going to get an answer like, ‘the chances are you’ll not be here in four months time,’ then  forget it.

I’ve been told that the doctors in the USA are more pessimistic than the UK.  I don’t believe it.  I chose my oncologist because she’s positive.  She goes for the strongest treatment available and hopes for the best.  I have to say though, that she’s not as positive as she used to be, but she sticks with the program.

According to some  stats then, I’m dead. Yet I still have to cope with today.  My  positive self directs that I have blueberries for breakfast, chard for lunch and salmon for dinner. I might need that extra fifteen minutes  they promise to  tack on at the end of life.   In the UK at this point, we make a cup of tea. But what kind of tea would I make? Mistletoe which might increase my life span by 5 minutes, or should I try green tea, 14 minutes. Oh what the hell, I’ll just have a double espresso. I turn off the computer, listen to something stupid like Dolly Parton and make   ‘builders’ tea’.  (Regular tea in UK with milk and sugar)  Another great day!

Optimistic, pessimistic or internetic; doctors speak to you and then you log on.  Where is reality?  I think you find out more about yourself than your condition.

“Reality is that which, when you stop believing in it, doesn’t go away.”  Philip K. Dick 

 

 

 

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