On January 1, I made my wish list for the year. We can just say I didn't get what I wanted. Maybe I was overly optimistic but I only wanted a healthy year, a year free of political mudslinging, a year of international stability and a year of tolerance. Not much.

Well where did we get to? The political mudslinging is getting ridiculous and as a note to anyone who aspires to get into politics - I will just say if you ever want to cheat on your spouse or tax return or change your mind about anything, please be sure to have a good reason to do so. On the international stability front, I feel the Doomsday clock (do we even still have that) ticking away: North Korea leadership, Greek and Italian economics, Iraq/Iran/Afghanistan/Libya/Egypt/a few more countries and their uprisings/protests/change of leadership. And the list goes on and on and on.

Tolerance? Well we certainly don't have that since we have political mudslinging and international instability. I do however see some progress in that. I am not saying its perfect but I feel progress. Talk to someone in a younger generation in the US and most of them are color blind - they don't care about the skin color of their friends and family members. Most have always gone to an integrated school where more than one language was spoken by their friends' families. I see progress in gay rights - it has its ups and downs but is staying at the forefront instead of being pushed off to the side so things are changing. We still have the stupid Westboro Baptist Church and other bigots around to spread hate and probably always will have to put up with other people's narrow-mindedness. But I do feel some optimism here.

On my health, well that's another story. I had another record number of doctor appointments this year - for some reason I keep count (well really its because Excel helpfully numbers the lines in the spreadsheet where I keep track of medical expenses so they can be deducted from our taxes). On one hand I have not had any kind of surgery for over 3 years (unless you count minor back procedures), but on the other I have body parts which are being problematic and if they don't get back in line soon that may end. I also am not being treated for anything too significant - unless you count post cancer as significant which I try to ignore. My back is being decidedly uncooperative these days which gives me lots of pain which sometimes leads to crabbiness and other problems. I did join a new gym in 2011 and am working on getting in better shape. Next step is to actually lose some more weight. I have also tried acupuncture for pain and other issues and will continue to do so.

So at the end of yet another year that didn't go as planned, I will have to come up with some new hopes for the future. Perhaps I will focus on smaller things like fitting into my size 8 pants again.

Health care as medicine not a business

Here's a concept - let's have health care focus on medicine and curing patients and not as a business focused on the bottom line. Before you jump up and down and say that health care is a business because there are fees and payments and people to pay and services to hire, blah, blah, blah. Yes that is true but my point (and I always have to have a point) is that it should not focus on the business side but on the patient side.

A hospital or medical center or a single doctor's office has to run as a business but it really should put the priorities of the patients first. Did the doctor become a doctor to be rich and drive a Mercedes or did the doctor want to cure people? I think that people choose their careers with an eye to doing something that gives them some satisfaction as well as pay the bills. I mean if you want to get rich and drive a Mercedes there are ways to do that without cutting sections out of people and peering inside their bodies. You can become a stock broker or something else.

Hospitals are medical centers are designed to be places where patients receive care and they should be run that way. What is in the best interest of the patient and their care? If a doctor needs another test to figure out what is wrong with a patient, why can't they order it? Why does it have to be approved by an insurance company? If a doctor wants to prescribe a drug for a patient, why can't they choose the drug they believe is the right one? Not the one that the pharmaceutical company is promoting this week?

All of this is true for others in the medical profession - technicians, nurses, interns, therapists, etc. Medicine is about the patient, not about the bottom line.

If we reread the Hippocratic Oath, which is taken by doctors and other medical professionals, I do not see any reference to insurance companies, manufacturers, red tape, hospital administrators, pre-approvals, etc.

I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

That pesky mammogram controversy

Here is another article telling us about the benefits of mammograms. It says that after following women for 15 years, 86% of the ones whose breast cancer was discovered by mammography were still alive vs. 66% of the women whose cancer was found through other methods.

How many times do we need to say this? Mammography is beneficial and insurance companies and government insurance agencies who only want to cover mammograms after age 50 or only every few years instead of annually, are just being cheap and sacrificing women's lives.

Allow me to simplify:
- there is a test to screen for a deadly disease that occurs more and more frequently after age 40
- women who get the test are more likely to survive the disease as they are diagnosed earlier
- women who get the test are more likely to have lower medical care costs as they are diagnosed earlier
- the test saves lives and costs

And where is the problem?

Balancing progress and costs

We always need to balance costs vs progress. When does it make sense to repair your car or trade it in? How about total high tech operating rooms which give doctors real time data on the patient's status? They even have a fancy name: AMIGO - an acronym for advanced multimodality image-guidance operating.

"It has it all: an MRI device that can be rolled into the operating room via a ceiling-mounted rail system; a positron emission tomography-computed tomography (PET/CT) machine to reveal biochemical or metabolic activity; an angiography X-ray machine to view arteries and veins; an X-ray fluoroscopy machine that uses dyes to show blockages; and an ultrasound system for tumor identification and targeting.

All the devices are integrated through an electronic system made by Winnipeg-based IMRIS Inc., which pulls together many of the imaging technologies for viewing within the central operating room."

It is not the first time that all these technologies have been used in operating rooms but the first time they are used simultaneously and integrated together.The benefits are great - doctors are better able to operate and monitor the patient.

But what about the cost? It is a $20 million room. There is one at Brigham and Women's Hospital in Boston and more are planned. It has been used for 30 operations since it opened a few months ago. It is not supposed to be considered an operating room but a research lab. So I guess it sits empty and unused the rest of the time. All that fancy imaging equipment isn't used on other patients who are waiting to have a test scheduled in the coming weeks.

$20 million is not small change. If it is a research lab how long till we see results? How long until the machines need to be upgraded or repaired? Will we see any results before all the technology is out of date? In the day and age of spiraling medical costs, is this a step in the right direction? I am not sure. I am all for medical progress but this seems very concentrated on a very small number of patients.

Maybe its the limousine that is used to go to the grocery store mentality - yes it does the job but its very expensive and more than necessary. I don't know. I just wish that progress made it so that all this expensive equipment could be used for others instead of just sitting there.

On strike!

I think that everyone deserves the right to stand up for themselves and protest what they disagree with. I mean if you don't like the way a business treats you, you can vote with your feet and take your dollars elsewhere. If you don't like your salary you can find a new job or ask for a raise. Sometimes you can even go on strike. I don't really like strikes. I find them a bit excessive and costly in the long run. Life is full of the choices we make and we need to life with the consequences. If we choose a job and don't like the pay, find a new one. If we drop out of high school, and then spend our lives in jobs asking 'do you want fries with that?', we can't go on strike to say that its someone elses' fault we made that decision.

Yesterday I heard something on the radio about London taxi driver's being on strike because they wanted more  holiday pay - they had to work on Boxing Day a public holiday and wanted two more days off. I am not sure of all the details but basically if taxi drivers are on strike, people will find other ways to get around so they won't spend their money on taxi fares. In the long run, they may start to avoid using taxis and the taxi companies lose income which doesn't help them or allow them to easily pay their employees more.

There was the Verizon strike this summer where management was harassed and ended up in several criminal arrests. I am not sure how much that helped the workers cause. I mean they were upset with management and wanted more compensation but if they resort to criminal activities as part of their strike, I think management might be less inclined to be nice to them in the future.

But another strike is a bit more serious. There are 10,000 doctors on strike in Rajasthan, a state in India, protesting pay rates and promotion opportunities at the state hospitals that cater to the poor and want to be on par with their federal counterparts. Maybe they have a valid point and should be able to strike. They are finding other doctors - from the Army and elsewhere to fill in - and 420 doctors have been arrested for being on strike. Unfortunately this can result in consequences for the patients. The government claims no deaths yet but how long can this go on with interim plans?

This leads to the question - does everyone have the right to strike? Are there other ways to show your disagreement with your bosses. While I think everyone has the right to protest, I am not sure about doctors striking. Don't they swear to the Hippocratic oath that says to do no harm? But if they are neglecting their jobs on principle, aren't they potentially doing harm? Their job is to care for patients and by neglecting them, they are not helping their cause.

Making choices

Along time ago, I remember being in a junior high class where we were asked to spend the next 24 hours writing down how many decisions we made that day. I chose the easy option and decided not to make any decisions  so it would be easy when I got to class the next day. I think I was laughed at by my class mates when I said I had only made one decision. Basically we make decisions constantly on large and small things. Do we want more milk in our coffee or tea, do we want to sit on the left, middle or right side of the sofa, do we want to wear pink socks or blue ones, do we want to look at this or at that. And the list goes on.Sometimes the decisions are easy and sometimes they are much hard.

Part of being a human being is learning to live with the consequences of our decisions. Sometimes they aren't pleasant - maybe the milk in our coffee was sour or maybe a large 'odorific' person picks the seat next to your chosen one. Do you hold your breath, breathe through your mouth or move and hope they don't think you are rude?

When faced with a nasty medical diagnosis you also get to make decisions that can be life or death. It goes with the territory. You review your options and decide what you think is best for you - what you are most comfortable with. It is your choice and you make it. You don't let someone make it ofor you - you do it on your own, or with our own team of family and doctors.

Then the worst thing you can do is to start second guessing your decisions. You can't undo the surgery you had although you can have it later, but then is it too late? Actually that is the second worse thing to do - second guessing your own decisions. The worst thing you can do is second guess someone else's decision. They made their choices and they are coping with them. So don't tell them they were wrong.

When I had my second cancer diagnosis, I made decisions with the help of my husband and doctors. Sometimes people I knew would basically say 'I don't know why you chose that as I know of something I think is better.' No they wouldn't use those words, they would say things like 'my brother's neighbor's hairdresser's dogwalker's nephew had cancer and their treatment was protocol Z so I can't understand why you are getting protocol B instead.' Maybe they had good intentions but they start causing you to second guess your decisions, causing more stress and further complicating the situation.

Steve Jobs had pancreatic cancer for several years. After his death some 'rocket scientist' (and I use them term loosely) says that he may have caused his own death by choosing alternative medicine over conventional cancer treatment. Um, maybe that's what he chose - he made his choices and did what he wanted to do. It is no time for someone to say he did the wrong thing. How do you think that makes his friends and family feel? I think people should just keep quiet at this point.

Holiday thoughts

Today as Christmas, unless you somehow missed it and haven't heard about it, and many people celebrate it but not all. Recently a friend was blogging about how Christmas for her is different - she's Jewish and its her birthday. She doesn't get to celebrate her birthday on her birthday with her non-Jewish friends. The goyim are all doing Christian things like going to church and opening gifts. Other people have their own holidays to celebrate - Hanukkah, Kwanzaa, Festivus, or other holidays at different that occur at different times in the year.

Whatever the holiday there are always are a few consistencies. Families who celebrate it get together and do their thing - usually eat, sometimes gifts or religious services too. Families who do not celebrate do their usual thing. Some holidays require businesses to be closed by law. Some holidays allow businesses to be open. Usually there are some kinds of restaurants open for non-holiday celebrants as well.

But there is one thing we should never forget there are some people who do not get holidays - think about it what is always working 24/7: public safety, military, medical professionals, emergency management people - do you think the guy at the nuclear power plant who is in charge of making sure there aren't leaks ever gets time off? Isn't someone supervising the internet somewhere to make sure a server doesn't crash - and tell me with all the servers in the world one of them is bound to crash every day.

On a holiday, I am sure all these professions allow for some juggling - well maybe not the military - to let people spend time with their families or allow them to trade off each year. But there is always someone there. If you are hospitalized, you don't get a day off to go home for a holiday meal - if you could they would send you away. If you are in a car accident or something, you don't have to wait until tomorrow to get fixed up in an emergency room - and the firemen, police officers, and EMS are all there to take care of you.

This past Friday, December 23, I had a doctor appointment at 3:10 pm. When I scheduled it I didn't think much of the timing of it but when I arrived at the hospital, it was clear it was a very slow time. The parking garage had several primo spots available. The waiting rooms were mostly empty. I was one of three people sitting in a waiting room which usually has a constant flow of patients and staffers in and out was very quiet. My doctor was running late and I didn't leave until well after 4pm. I had to stop by admitting where there was a single, young woman working. Even though it was a quiet time, everyone I saw was cheerful, pleasant, caring, and happy to do their job. They weren't complaining that they were some of the last employees in the hospital right before a holiday.

I saw this article earlier last week reminding us to thank all our nurses on Christmas for their care. I think there is a lot more than that. We need to thank all of those people who take care of us and make sure we are safe and healthy at all times. Holidays should be for everybody but we couldn't survive them without some help.

PS Happy birthday, Judy!

More pictures!

Are more pictures better? Back in the days of black and white cameras on tripods, a professional photographer would come and take a single posed shot of serious looking people dressed in black. After being hand developed a single picture was produced with no copies to send out to friends a relatives. Then personal cameras came into play and little towers of flash cubes were added on. Film was sent out to be developed and you crossed your fingers until they came back to hope that everything was in focus. You might take a couple to double your luck but still a lot was left up to chance. Then digital cameras came along and we clicked away like mad - shared them everywhere. Focus and aim become less important as quantity increases your odds for a good shot. All of our foibles in living color are available worldwide in this digital age.

In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more.  Is this better or not?

Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.

Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.

When medicine goes wrong

How do you undo a surgery? Well you can't restore all the little nerves, blood vessels, tendons and muscles to their pristine  untouched state - that just doesn't work. But you can have implanted thingies removed and replaced with a newer model. But this means the whole mental, financial, physical stress of the original surgery all over again and more. I mean we hear about the cases of the doctors took out the wrong part, or someone received the wrong medication or wrong dose, or got an infection in the hospital. But what happens when its a much bigger mistake affecting thousands?

One example from this morning's news is that a child who received a transplanted blood vessel and two others who received kidneys now all have hepatitis C. These were all traced back to a single donor and a testing error at a tissue bank and some delayed communication. These three people now face lives full of illness. How do you undo that one? You can't. Ever.

But here is a much larger example of medicine gone bad. There was a French company which used non medical grade silicon in its breast implants - silicon meant to be used for mattresses (ick!). The company was stopped in 2010 but there are 30,000 French women with their implants, 1000 of whom have had them rupture so far. The French government is recommending that all 30,000 women have these removed. There have also been 8 cases of cancer possibly linked to the implants and one death.. A rupture is very painful and requires additional surgeries. So the French government has banned them. But the company had made 300,000 implants over the 12 years in operation - some went to the UK and many went to South America and other parts of the world.

The British government is downplaying the cancer risks from these implants and claim they don't have a cancer link. But they didn't mention the risks of them rupturing, recommend consulting with the implanting surgeon if there are concerns and are not recommending removal of this brand of implants.

But BACK UP A MINUTE, a company used inferior quality materials to make medical implants and where are the fines, penalties, lawsuits? I am not a fan of stupid lawsuits but in this case where 30,000 women are going to have to have a second surgery. Even if France's national health care pays for it, that is still a lost cost. What about the emotional and physical strain?

Yoo hoo, the 'morons' (and I use that term loosely, feel free to substitute a stronger word if you want) who made the decision to use the inferior silicon and the other 'morons' who approve them should be held accountable in some way - financially, civilly, and criminally. Some where a long the manufacturing pipeline there was some deception which will cost millions of dollars/pounds/Euros to the general public as well as physical pain and suffering and emotional distress when faced with more surgery.

This is a situation which is relatively scary. I mean it was caught here but what about other cases of this we do not know about elsewhere in the world? Medicine when done wrong is really hard to undo and should be avoided at all costs.

Were they trying to be sneaky?

The long arm of the law caught up with  13 pharmaceutical companies for overcharging Medicaid customers in Massachusetts. The state will get $47.4 million back from these companies and a total of $69 million overall. Other states with help from the Federal Government are also going after the pharmaceutical companies and the fines collected are expected to grow substantially.

The way I understand it (and I am not 100% sure) is that Medicaid makes agreements with pharmaceutical companies on the prices to be charged to those on Medicaid. And apparently they are accused of false pricing, kick backs, and off-label promotion of the products. The state could have accepted a much smaller settlement as part of a federal case a few years ago but stuck to their guns and got their larger award.

I am not sure that the pharmaceutical companies are trying to be sneaky or intentionally break laws. I am sure they are ethical companies but practices such as these are not unknown in the business world. All it takes is a unscrupulous person or two and voila a crime occurs.

In an era of skyrocketing medical costs and local and federal governments strapped for cash, any violation should be prosecuted and moneys redeemed. Over charging for medications end up costing us tax payers a lot more in the long run.

Not a political post

This is not a political post but I admit it is slanted towards politics. We are all aware of how our elected representatives in both houses of Congress have been playing a long game of 'its my way or the highway' and end up at cliff hanger votes at the last minute. Well these lovely leaders are at it again. The payroll tax vote was rejected by the Senate and they went home until after the first of the year. Why am I blogging about the payroll tax vote? I am not.

I am blogging about the fact that tied in with that vote are several other issues including the unemployment extension, some stupid pipeline thing and the 650,000 doctors who treat medicare patients are facing steep drops in compensation on January 18. That is what I care about. I am ignore all the other crap tied in with this one vote that is the current holiday stale fruitcake that will be left to kicked in to a corner somewhere in January. (I do realize that there are a lot of people affected by the other things tied in with the vote who are also stressed - I do acknowledge their issues but they are outside the realm of my blog.)

People who rely on Medicare are now stressed and worried through their holidays because the politicians are idiots and only care about their own egos than then people they represent. "The “vote seriously destabilizes Medicare, and causes anxiety for physicians and seniors who depend on it,’’ said Lynda Young, Massachusetts Medical Society president, in a statement yesterday."

If there is a backlog in processing claims because the vote is not taken, the Medicare computers will likely crash causing even more problems. Too bad the politicians don't remember that the seniors who use Medicare are the most likely to vote. But this isn't a political post.

Medical Costs

We are all aware that medical care is expensive as is health insurance. But do any of us really understand why? That I am not so sure about. There are some things I do understand - doctors and other medical professionals are highly educated and trained and deserve a decent salary in return; insurance companies, hospitals, and medical centers are businesses and are trying to run in the black as opposed to the red; medications range from really cheap to phenomenally expensive; medical equipment can be very expensive; and the list goes on.

Here are two ideas where I think the idea is right but I am not so sure the execution is. In the first idea patients are rewarded for choosing lower cost medical care. They have access to a medical concierge who directs them to cheaper care for tests such as mammograms and colonoscopies and are rewarded with a check from their insurance company. Shouldn't that reward actually lower their insurance premiums? Also doctors are concerned that they are referring patients to a place where they are comfortable with the quality of care so once again are insurance companies making medical decisions solely based on their wallets? And if the savings is $1700 for a colonoscopy shouldn't the patient's reward be substantially greater than the $10-$75 quoted?

In the second idea, Medicare reimburses doctors per each patient not for each procedure. Doctors are then rewarded for staying under budget and penalized for going over. Again insurance companies are making medical decisions based on their bottom lines.

In a free market economy (as I recall from those days in my deep dark past of economic classes in college) is based on supply and demand. So where is the price list so that people can shop around? There isn't one. Prices are set through secret negotiations between insurance companies and medical service providers - and range substantially. Patients aren't concerned with prices because their insurance covers it and they don't get to see the price so they can care anyway. Also insurance premiums are negotiated between employers/blocks of employers and their insurance companies. Rates are negotiated based on desired rate increases on the part of the insurance companies vs. changes in co-payments and covered items on the part of employers and patients.

I am going out on a limb here and if anyone likes this idea and can make any of these changes, feel free to act on them. What if hospitals and insurance companies were transparent when it came to sharing pricing? What if you got a price list that told you how much the same test/procedure/medical adventure would cost at different places and you also got to see a review of the quality of care? Then you could make an educated decision on the care you were receiving and what it cost?

More on cancer vaccines

Here's a little more about those well publicized cancer vaccines. They have their pluses and minuses which are clearly illustrated in these two diagrams:

Some of the downsides are clear that they are so far very expensive, may have to be custom made, and are for very specific treatments. But one of the very clear upsides is that where one is working, companies are trying more:

Many more cancer vaccines are under development, with hundreds of trials underway in patients with breast, prostate, lung, kidney, colon, cervical, brain, and pancreatic cancers, as well as lymphomas. Once companies confirm the effectiveness of these therapies in one type of cancer, they are likely to try them in others.
“From the immune point of view, the distinction between one cancer type and the next is not so important,’’ said Dranoff, who did early work on Yervoy. “That’s part of why so many companies now are developing these agents.’’

So a lot more promise but we need to be patient. Crap. I am sick of being a patient patient. But I will suck it up and continue to optimistically watch this progress.

Medical roller coaster

Last night I actually attempted to be a social butterfly and went to two parties (without my husband because he is cranky as he now has my cold). At the first party a friend was talking about the medical roller coaster of having a heart attack at 43 and now living with the constant what if fear. She said she has a stent and has changed her life - taking better care of herself, quit smoking, etc but constantly wonders what if her arteries are clogging again. She asked her cardiologist and he tells her that since she tests well on stress tests and feels okay the assumption is that her arteries are doing fine. There is no way to tell if they are opening up more or slowly clogging up again without some invasive tests. She feels like she is living in constant limbo. I talked to her a bit about it how learning how to balance the ups and downs of the medical roller coaster. Its just learning to cope and it has its definite ups and downs. Its not just cancer that puts you on that lovely roller coaster.

At the second party, despite the unexpected arrival of Santa Claus to replenish the miniscule beer supply (really he showed up with a case of beer), the elephant was clearly in the room. The host of the party is living the 'chemo for life' program with a stubborn case of Stage IV colon cancer. While he looked pretty good and was socializing with his ever present bottle of water, he did need to sit down for the bulk of the party and at one point snuck off to find one of the really good drugs his oncologist provides. He is on the same medical roller coaster but one with steeper hills and bigger drops but was talking less about it. I am not sure everyone realizes how serious his situation is. His treatment only has one end. When I left I wished him well on his upcoming scans this week. They will tell the story we hope will bring a merry Christmas.

So the medical roller coaster is alive and well for many of us and takes many forms. How scary a ride is a matter of perspective.

A little more optimism

I happily discovered this article yesterday - that someone else helpfully posted on a cancer message board which greatly eased my internet roamings. It seems we are getting closer to that Star Trek utopia where they talk about cancer being cured in the 21st century as a cancer vaccine is looking more and more promising. There are some that have been tested and are in the development pipeline. This means that actual marketability is within a reasonable range of years - provided that they get through clinical trials.

Imagine a world with out cancer. Is it possible?

- All medical professionals would need to be retrained
- Chemotherapy drug manufacturers would need to find new products
- All those nasty cancer treatment side effects would no longer be a problem.
- People would live longer.

Next step a cure for the common cold and world peace.

Ending without regrets

When we get to the end of our lives, I would think we would not want to be filled with "shoulda, coulda, woulda's" but to be able to go peacefully without regrets. Life is to be lived and enjoyed - we should be doing what we want and having an enjoyable life-work balance.

Somebody wrote a book about dying with regrets and someone else blogged about it. So now I get to blog about a blog - how creative. Anyway, here are the five biggest regrets of the dying taken from listening to people in palliative care for years:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
2. I wish I didn’t work so hard.
3. I wish I’d had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.

What does this list teach us?

• Take time to stop and smell the roses
• Learn to express our feelings and do what makes us feel good.
• Surround ourselves with people we care about.
• Do what we enjoy.

No one has ever died saying 'I needed to work longer and harder for someone else'. We all need to do things we don't necessarily like but we also need to learn to fit in the things we want. So take a break and do something for yourself every so often. Its all about looking out for yourself.

An Example of Coping

Yesterday, courtesy of my lifeline, the DVR, I watched a recent episode of The Closer called 'Relative Matters'. Originally I wasn't such a big fan of the show but it has grown on me and I watch it regularly. In this episode, Kyra Sedgewick's (the star) father is diagnosed with thyroid cancer.

It throws the family for a loop and shows their coping from all sides - patient and family members. The emotions they all go through are shown in towering rage and tears. After tears, one of the first things Kyra does is to run to a medical examiner for advice on how serious the diagnosis is. I am interested to see how this story continues through the season as I feel it is a fairly accurate depiction.

Although I can't show the entire episode because I don't have access through my internet provider you can watch it here (meaning I don't have the power). In the meantime, here is a five minute preview which shows a bit of it (which I can't even embed because again I don't have the power). I actually like the idea of a little publicity for this relatively rare cancer that is increasing in incidence.

On another note, if you are unsure what the thyroid actually does, here is a pretty good description of its power and how messed up it can make us lucky people who live without one.

Thyroid cancer information

Finally I have found a nice little compact resource on thyroid cancer. It is published by the Thyroid Cancer Survivor's Association (www.thyca.org). There is not a lot of information out there about thyroid cancer because it is relatively rare - about 30,000 cases annually out of the 1.6 million total cases of cancer in the US each year. Also, its is one of those so called 'good' cancers (and again if you say it to me, I'll be forced to smack you - no cancer is a good cancer) as the survival rate is relatively high.

However the result of treatment for thyroid cancer is a lifetime of monitoring to keep your thyroid levels right - your thyroid levels can affect all sorts of things in your body including blood calcium levels, metabolism, etc - and monitor for recurrence. That's right thyroid cancer is known to recur up to 30-40 years later. So never mind that you get through the first five years when most cancers recur, its the first 40 years that you have to worry about recurrence. According to this new book:

"After your treatment, you will receive life-long monitoring. This  is for two main reasons.
• First, long-term monitoring is important to make sure that your dose of thyroid hormone replacement is appropriate—neither too low nor too high for your specific needs.
• Second, you will receive testing to find out if there is persistent disease or possible recurrence. Many people with
differentiated thyroid cancer experience persistent disease or a recurrence, sometimes many years after the initial treatment. The prognosis for any person with a recurrence is better if it is discovered early. This is why life-long monitoring is important.
• The exact type of monitoring, and how often it takes place, depends on the size of the original tumor and whether the cancer had spread locally or distantly, as well as other factors.
• People free of disease receive less monitoring or testing than those with evidence of persistent disease.
• Also, testing is spread out and becomes less frequent when the patient becomes free of disease. You and your doctor should discuss a plan to fit your situation.
Monitoring will most likely include:
• Physical neck examination, including feeling the thyroid bed area. Typically, this is done every 3 to 6 months for the first 2 years, and at least once a year thereafter.
• Blood tests. Certain blood tests will determine if you are on the right dosage of thyroid hormone replacement. Your medication dose may change over time. Blood testing is also useful to monitor for cancer recurrence. The blood tests will depend on your type of thyroid cancer.
• Neck ultrasound. This test is increasingly used because it is a very sensitive way to find potential disease in the neck. It involves moving an instrument along your neck, without any pain, and there is no radiation exposure associated with it."

So it may be a good cancer in that you probably won't die from it right away, unless you have Anaplastic thyroid cancer which is only given a Stage IV diagnosis and prognosis, but you have to keep watch for the rest of your life. And cancer is cancer no matter how you call it. If you want to learn more, go here and down load your own copy of the new book.

In case you thought I was making it up

A new medical study (which of course we needed) has shown that cognitive issues exist after breast cancer treatment. Basically this means my chemo brain is real. Go watch the video here. Some major technological advance (or my chemo brain) has prevented me from embedding it.

It is nice to know its not all in my head that others cope with it as well. I like it when a medical study agrees with my thinking instead of confusing me.

Insurance insanity

I go to the hospital and pay my copay. Then I get a little statement in the mail which tells me how much more I owe - which is 15% of the allowed amount for whatever it was. Then I get a bill from the hospital and pay the rest. Simple? Right. Sure. Then I get a check back from the hospital telling me after an audit it shows I was owed this. They do not reference a specific visit so I never know what these are for. I called once and was told that often the insurance company changes what they cover and I get a refund or another bill. It drives me crazy.

The first year of my medical roller coaster I tried to match up bills and statements and copays and gave up as it simply didn't work. Especially with these stupid little refunds. Its not that I mind getting money back but since I cant attribute it to a specific thing I have to just assume that it is correct. I am not an accountant (and am not big on balancing my check book) but I don't think this is good accounting practice. But that's okay I am merely a patient at the mercy of the hospital and the insurance company.

This is a minor problem compared to what other people go through. First the insurance company tells you they will pay and then they change their mind. Can I tell you how wrong this is? Insurance companies should not have the ability to make medical decisions for patients. And the worse thing they could do is agree to pay and then deny it, retroactively. Are they inhuman or something? Or just need a smack in the head?

Lifestyle causes cancer

40% of cancers are due to lifestyle factors? Hmmm.... I'm somewhat surprised. I don't consider these to all be lifestyle options we have chosen. I am not sure we can change all of these: being overweight, alcohol, tobacco, sun/tanning booths, too much red meat, lack of fruits and vegetables, lack of fiber, lack of exercise, post menopause, having children, infections, radiation exposure, and occupational hazards.

For women you can't change menopause, it happens. And on having children? Maybe you never wanted them or you wanted them but it didn't work out for you? Not much you can do about that after your mid-40s.

But the whole part about exercise, eating right - fruit, vegetables, fiber, and red meat, watching your weight, alcohol, and tobacco are all changeable. Radiation exposure is a bit difficult. I mean you can minimize the number of x-rays and other medical exams you have but the sun provides natural radiation and if there is what is radiation leak you don't know its there. I mean the air doesn't turn blue if the air is contaminated so you may not know. Infections are somewhat preventable but not always. Occupational hazards are another - whether you are a construction worker who was exposed to asbestos or a high tech lab worker who was exposed to carcinogens - you don't always have the option of changing your job.

From my point of view, I do eat right, I used to smoke but quit, alcohol not as much, I used to be skinny prechemo, also chemo put me in menopause, I've never been in a tanning booth and always use sunscreen because I fry in the sun (but was exposed to a lot of sun as a child), I am relatively athletic, I never had children, and don't think I work with radiation or other occupational hazards. So am I in the 60 percent? I don't know. I am not going to try to second guess this. I hate these articles. They always give people with cancer a guilt trip.

Cancer changes everything

Its funny how a cancer diagnosis can change your opinion of things. I am not taking a political stance here but I find it intriguing how some one who was so completely against health care reform, once diagnosed with cancer, is now one of its biggest supporters.

Spike Dolomite Ward, a columnist with the LA Times, was originally for Obama but then against health care reform. Then after having to choose between her mortgage and her health insurance, the house won, she was diagnosed with cancer. Because of health care reform, she was entitled to insurance under the preexisting condition clause. This changed her mind. I don't know Spike and I don't really care about the politics of health care reform.

I realize some people are upset about the idea of being forced to buy health insurance. I can understand that. No one wants to be forced to do anything. I also realize that some people don't want health care reform because they dislike Obama simply because of his politics. That attitude isn't one I am very comfortable with. Obama is president. He was elected by the majority. He signed the health care law as he said he would. You can't undo that so stop complaining. If you don't like him, don't vote for him. (This obstructionism in US politics is getting out of hand - don't let me get started). I don't really care about the politics of the situation. It is not about politics. It is about patients and people who are trying to pay their bills.

I am some what disappointed that it took a cancer diagnosis to make one person change their mind about health care reform. I think there is a lot of energy being wasted on the concept of health care reform and not enough energy being spent on using the benefits of it. Young adults in their 20's now can stay on their parents health insurance instead of going without insurance. Those with preexisting conditions now can get coverage. More preventive care is covered. I know taxes are going up as a result but they are always going up.

Health care reform is here to stay. I am not saying that the so called Obamacare will be the program that sticks with us. But health care in this country has and will continue to change. The system as it stands now is failing us. Insurance premiums are skyrocketing. Doctors and hospitals are being squeezed financially. Patients are choosing between feeding their families, saving their homes or paying health insurance. Medications and medical equipment costs are more and more expensive. Insurance companies claim they are being pinched as well.

Cancer changed one person's view of healthcare reform because she all of a sudden was the patient who needed insurance. This is the point. The system isn't working. People are going bankrupt and dying from lack of insurance. 

Taking care of yourself

I was reading a cancer message board about things the poster had learned that her doctor hadn't told her. I don't know where the gaps in communication are but there always seem to be some in the medical world. I don't think any of the gaps are intentional but they always seem to be there. I think doctors and nurses see dozens of patients each day and if that was me, I would have a hard time remembering to tell everyone everything I needed to say. I would be constantly asking 'did I already tell you that?'. Its human not to remembering everything.

But I have learned that it is important to ask questions, question things that seem confusing, and do your own research. And write things down if you can't remember them (my biggest problem).  I can't tell you how many times I have been taking a medication as I thought was correct to find out that I was doing something wrong. I have medications that can't be taken with anything else or can't be taken within an hour of food or four hours of vitamins. Its complicated. But my doctors have only given me details on taking them when I have asked specifically. I have actually gone through my list of what I take with what and when (its kind of complicated actually) to make sure its okay.

I have also learned that when I am scheduled for another medical 'adventure' I need to ask a whole list of questions - not the printed procedure information that they give me - about how long it will take, can I drive home, what are pain expectations. Also, what about the results - when to expect them, what we will learn from them, etc.

Finally I have learned to be proactive about my care. I ask if I really need tests or adventures. I try to consolidate appointments so I can minimize trips to the hospital. I ask for things to be scheduled for my convenience, not theirs. Its all about me and not about them.

Supply & demand vs. price gouging

For a little economic lesson this morning, (don't worry I did take and pass both micro and macro economics in college but that was a long time ago and I don't remember much) one of the basic free market principles is supply and demand - how supply determines demand and hence sets pricing and more.

Medications are developed and manufactured by the companies who own the brand and are often sold for some giant price. As with any manufacturer, a pharmaceutical company will run into the same issues any other would - production issues, lack of raw materials, broken machinery, etc. These cause disruption in production and availability. Some production down time is allowed for - annual factory maintenance etc - but not all down time is  planned. This causes shortages - thus reducing supply.

When this happens in your grocery store, you buy a different brand or go with out. But when it is a life saving medication, its not that simple. New guidelines are being put in place so that manufacturers have to be more proactive in informing people about shortages and be better about preventing them. In the meantime, when there are drug shortages the scumbags (and I use the term loosely) who get the remaining amounts of the drugs and sell them to the hospitals at astronomical prices. Also known as price gouging.

As we live in a very reactive political world, there is legislation being introduced next week to make this price gouging by 'unscrupulous drug dealers' (a/k/a scumbags) into a federal crime. These people are forcing hospitals already in a belt tightening time, to greatly overpay for something that is needed to save lives. They get rich, a few people die, who cares? Right? WRONG! It should be a crime. And the money the hospitals are overpaying for these necessary drugs could be used to help other people as well.

This is the kind of thing that just ticks me off and makes me crazy. Its right up there with the 'losers' (and I use that term loosely) who claim they have cancer for the money and sympathy but are healthy. Grr!

Perhaps some real progress

How about a vaccine to prevent cancer recurrence? And it has already gone through Phase II clinical trials. The Phase III trials start next year. That sounds pretty darn good to me. Yes its only for some people with certain kinds of breast cancer and it doesn't eliminate risk of recurrence but reduces it by more than half.

These researchers chose a different route and it worked:

The senior investigator, Colonel George E. Peoples from Brooke Army Medical Center, Fort Sam Houston, Texas, told Reuters Health by email, "We have taken a different approach to cancer vaccine trials and focused on the adjuvant setting. We want to use our vaccine to prevent disease as opposed to treating established tumors."

As it has gotten through Phase II trials, this means they have already been following patients for an average of five years. It is my understanding that once a drug has gotten this far, they have a pretty good chance to get through to FDA approval.

I'll call this some real progress and look forward to more of the same.

Reading between the lines

This blog post made me think about the importance of reading between the lines. Dennis Hopper died from a supposed slow growing cancer. Hmmm... If its slow growing, why did he die so young? Prostate cancer is one of those 'good cancers'. I had two so-called 'good cancers' (and if you say they are good to my face I might smack you silly) - you know the kind that you are told 'if you had to get any cancer that's a good one'. Hah! There is no such thing as a good cancer. (I will say my now retired dentist did make such a comment to me about my breast cancer and we did laugh about it - because he said it in the right way and he also had cancer. People with cancer get special dispensation to say cancer things to other people with cancer as they really understand.)

When you are given those lovely words 'you have cancer', 'its malignant', 'its positive' or some such life changing phrase, among the many things you probably do is go look at all the numbers as well as get a lot of medical advice. The numbers may tell you one thing and the different medical advice, some different things. This is where you need to read between the lines and figure out where the truth really lies.

The stark reality of the numbers doesn't tell you the whole story. They give you the five year survival rate by stage and tell you how to stage your cancer - or what stage you want to be in. But if it says 80% are alive at the end of five years, 20% are not. But they don't give you that number, you need to do the math in your head. Somehow by only putting the positive number its supposed to minimize the impact. Even when the five year survival rate is less than 10%.

Then your medical advisers don't tell you the whole story either. They can project what they expect. They can provide you with a plan of care.They can tell you in nicely couched phrases their opinions of your prognosis. But are they going to come out and say something like 'you have an 80% chance of being here in five years' or 'you have a 20% chance of not being here in five years'? No. Never. I flat out asked my oncologist about my chances at one point. He did give me a fairly clear answer that was relatively positive. It took me a while to get up enough guts to ask that one.

But as a patient or bystander, you have to compile all the information together in your head and start deciphering the pile and figure out where you are, where you want to be, and how you are going to get there. You can't just go by the numbers - the 'good cancers' kill people each year as well as the 'bad cancers'. This means that while some people don't make it when they have a relatively good prognosis, other people with a bad prognosis live for years or even decades.

All the medical advice and statistics are based on averages. Averages are the same thing that give us baseball pitchers with a low ERA who walk three batters in a row or soccer goalies who miss that single (but very critical) goal in the season. They give us expectancies based on past experience. But they don't always predict the future.

Speaking of viruses and colds

Last week at work, there were two co-workers who didn't miss a day but both obviously had a cold. Their claim was that since they had been sick for a few days they were no longer contagious. The rest of us thought they shouldn't be there. I sneezed a few times last week. This morning I woke up with a cold. Grrr... As a result, this is one of my more uninspired posts so feel free to skip it if you are bored.

There are things in common between a cold and cancer. There isn't a cure for either. There are also risk factors for a cold as there are for cancer. I do try to minimize my risk factors. I eat a lot of fruit and vegetables, exercise, take vitamins. (That sounds like the same as for cancer.)

Colds don't necessarily do you in but they do make you feel like crap for a few days. And I have a lot going on and can't afford take any time off from work - the downside of part time work is no sick pay. Its not just financial its that I have a lot to do that has deadlines. I also have meetings two nights this week that I really should go to - they are for my other job. I will not go to work or the gym today or tomorrow. Last week was my first week back on the track of three times a week at the gym. I guess I am back down to two trips this week and it has barely started.

I saw a news article recently about how to avoid getting sick - but now as I am ready to write about it I cant find it anywhere. They included things like avoiding sick people, washing your hands regularly, etc.

I did just look up the difference between a cold and a virus/flu. Basically a cold is centered in your nose and a virus/flu makes you feel bad all over. So far its my nose and throat and a general feeling of crap. But it does give me an excuse to spend the day in sweats, catching up on reality TV on the DVR and drink a lot of herbal tea with honey. I think I have some home made soup in the freezer too. But hey its not cancer. So I'll just suck it up and whine my way through it.

Tempus fugit

Or time flies. (I had to look up the Latin part to make sure I got it right.) Some how we are approaching the end of 2012 and I have no idea how we got here. I remember partying like it was 1999 in the 1980s. I remember buying my first new-new car (as opposed to new-to-me) in 1989. When we were children half an hour until dinner was an eternity (but half an hour until bedtime was far too short).

All I know now is that I never seem to have enough time to do all the things that I want. Time goes much faster now. I have decided that is a fact. It has sped up. Something has happened along with global warming that has made temperatures go up and time go faster.

This week I am looking at my calendar trying to figure out how I am going to get everything done that I want to and I am not sure how it is going to happen unless I give up eating and sleeping or something.

And I don't even have a single doctor appointment and my schedule is still full. How I even have a week without doctor appointments is beyond me anyway. Last week I had four doctors and one x-ray. This week I have none. Next week I have one doctor and one back procedure. The week after I have one doctor and one back procedure. Then maybe another week off for the holidays.

But I digress. Time is going too fast. Some physicist must have figured out how to alter time and made it move faster. I am sure you agree.

Choosing a hospital

I admit I never put much thought into choosing hospital for treatment. At my first diagnosis, I went to the new local hospital because that is where my parent's friend worked and helped get an appointment fairly quickly. I mean I had a pediatrician and then went to college and got cancer and needed a new doctor anyway. Then I started going there for all my  doctor appointments so when 26 years later the next cancer diagnosis showed up, I continued to go there. I mean why not? It was local, had added a big oncology center with its latest expansion, the food is pretty good in the cafeteria, and they were nice to me. And the best part is they only have single rooms. You never have to share a room. Your insurance can't make you share a room. If you wonder what is so great about that go watch "The Bucket List" again. That was the best design idea any hospital architect ever had - single rooms with private bathrooms and showers.

I could have rushed to downtown Boston for a more specialized hospital such as Dana Farber or Mass General but that would mean driving in Boston which can be a contact sport at the best of times. And it would take three times as long to go about the same distance. 6.5 miles door to door from the local hospital in less than 15 minutes or 9.8 miles into Boston in at least 30-45 minutes. Add in rush hour and it could be an hour. I have a friend who decided to go to Dana Farber for chemo. She would have to leave her house around 7am for a 9am chemo appointment to allow for traffic- never mind trying not to lose your lunch as you sit in stop and go traffic.

Now there are other options around such as the Cancer Treatment Centers of America. I don't really know much about them but I do know people who have gone there from other parts of the country because it was a good option for them as they did not have quality cancer care locally. I am lucky as I live so close to so many hospitals which means there are lots of good doctors and nurses who provide a high level of care - competition improves lots of things - but many  people don't have the luxury and have to travel long distances for their care.

Someone from CTCA commented on my blog yesterday so I looked at their website a bit. I never really have looked at them because I never had the need. The closest one is Philadelphia - a good 300 miles away. Anyway, they do seem to offer a high level of care and brag about their statistics on their home page. If I didn't live so close to so many other hospitals would I consider them? Probably.

If I had another cancer adventure would I consider traveling for treatment and making that big trip down town? Possibly. It would really depend on the diagnosis. Its going to take a lot to pry me away from my local care. And I would have to have a single room for any inpatient care.

Cancer in the workplace

Cancer does not belong in the workplace. Actually health issues do not belong in the workplace. If you are disabled and need modifications to your employment, that is different. If you have a common cold and are sharing your germs with your co-workers, do everyone a favor and go home. But more significant ailments are not required to be in the workplace.

As the patient and employee, you are not required to tell your employer what is wrong with you. It is your choice if you do. But beware the perils of doing so. It doesn't matter how comfortable you are with your employment and your ailment and how much you want to share, it is others' perception of your ailment that is the concern. Cancer is scary to many people. Probably the scariest. There can be a bias as a result. 

I didn't tell any employer or co-worker about my first cancer for 25 years. It was no one's business. Since my second diagnosis, one of my jobs which is a cancer support center, knows about my health issues. My co-workers at my other work know of some of my health issues - even without knowing about cancer I am considered the least healthy person there because I have millions of doctor appointments.

I have worked in many different places and been on both sides of the job offer - extending and accepting. Seriously, if there are two people up for a position, and one has health issues which could be perceived to interfere with their ability to do their job in the future, who is getting the job? Yes we know this discrimination is illegal in the US but we also know it happens in subtle ways. There will probably always be a little subconscious doubt on their part - what if they get sick again???

I read this article which discusses women with breast cancer in the workplace. On one hand I agree - health care practitioners need to improve how they advise women on returning to work or taking time off. On the other hand, why is it anyone's business what has happened with your health. The article states:

"But it is clear that there are considerable differences in women's experiences of returning to work. Some positive working practices were reported, but other organizations were guilty of a culture of ignorance. Many of the negative experiences centered on the unrealistic expectations and inflexibility of some employers, lack of support from colleagues and mistaken assumptions about the woman's physical appearance."


So why were the told what is wrong so they could have these issues? If you get cancer, all your employer needs to know is that you need surgery and some on going treatment. You may need to take time off or a curtailed work schedule for a period of time. For all they know, you could be having knee surgery and need a week off from work and then allowances for PT three times a week. It is not their business.

Since my second diagnosis, I have been a bit more open about my health but if there was another cancer adventure in my life, I think I would selectively share the information.

Maybe a little virus will cure cancer

I find this very cool. A little research lab in Pennsylvania thought they had a broken incubator but may have stumbled on a significant breakthrough in a cure for cancer. As I am not technical and did not sleep well last night and have not had enough caffeine (not that I drink coffee any more and more only inhale the aroma) I will attempt my explanation:

There is a very simple virus that was being tested on cervical cancer cells which is believed to be caused by the Human Papilloma Virus. Someone left the virus cells in an incubator with the cancer cells and then went back and the cancer cells were liquified. They thought the incubator was broken but then could repeat this phenomenon and with other kinds of cancer cells. Now is that cool or what? Making cancer cells liquify and go away. Sign me up baby! I'm there.

BUT... Of course there is a big fat BUT here (not a big fat BUTT which is an entirely different thing). It has to finish being tested and going through trials. Which can take a couple of billion (yes with a B) dollars and 10-12 years. The article gives a very good and clear summary of what it takes to get a breakthrough from a lab to an authorized treatment:


"Steps to FDA approval
It’s a long, long road from the laboratory to the bedside, governed by the Food and Drug Administration. The vast majority of all drugs and therapies developed don’t make it. The American Cancer Society estimates it takes about 10 to 12 years to fully develop a drug or therapy from the laboratory to bedside use.
1. Preclinical (animal) testing. This is where Dr. Meyers team is in the process.
2. Phase 1 studies (typically involve 20 to 80 people).
3. Phase 2 studies (typically involve a few dozen to about 300 people).
4. Phase 3 studies (typically involve several hundred to about 3,000 people).
5. Submission of a new drug application is the formal step asking the FDA to consider a drug for marketing approval.
6. After an application is received, the FDA has to decide whether to file it so it can be reviewed.
7. Review of the application resulting in application approval or the issue of a response letter.
Source: Federal Food and Drug Administration"

So while this a very cool breakthrough and it looks very promising, we can expect to see it maybe in 2021 or so. However it has started my day off with a bit of cheery optimism in the middle of a week which has included an x-ray and 3 doctor appointments so far. In the meantime, I am cheering on this little virus.