We don't get a 'do over' for life

When we are little we want to grow up and be a policeman/fireman/doctor/teacher/nurse/president/astronaut/professional athlete. Then as we get older we want to go live in the woods and become vegetarians/paint on the beach in Tahiti/save the world and have all sorts of idealistic rose colored glasses filled dreams. Maybe next you want to get rich so you can live the easy life in a nice house with nice cars, etc.

At some point you go to college, get a job, date, marry, children, etc. But then life starts to interfere. Maybe you don't get married until later. Or marry a jerk and then marry the right person later on. Or you never get rich. Or you don't get recruited out of college for the team of your dreams. Or you have children and are struggling as a single parent. Or find your college major will not help you get the job of your dreams. Or your health interferes.

At some point you realize your dreams are not all going to come true. You are not living on a beach in Tahiti and you aren't a millionaire. You aren't married with children. Are you filled with regrets? You shouldn't be or you need to learn not to be.

If I had a preference I would not have gotten cancer twice, maybe I would be richer, maybe I would be a size 6, 5'7" physically fit person who never has to work out and could eat chocolate and ice cream three times a day. Yeah, right.

Life is about learning to adapt. We all have a bit of Darwin in us as we learn to roll with the punches.
We do not get a 'do over' for life. We are stuck with how our cards are dealt. We need to learn to roll with the punches to thrive and survive. And still eat chocolate every day.

Time

The word of the day is 'time', or perhaps it should be 'sleep' or lack of it. This business of changing time twice a year is perplexing. I mean what is the point? All it does for us is mess up our sleep schedules for a few days. I did some research and found out a bunch of details on it:

The whole point of daylight savings time is to maximize the amount of sunlight later in the day and lessen the amount in the morning.  It was the rocket scientist idea (did they have rocket scientists them or were politicians just as smart then as they are now) when Congress approved the time zones that the train schedules had been following since the 1880's. Who knew mass transit would force time zones? It is optional now and was only mandatory in 1918 and during WWII - as it is supposed to save power. In 1966 it was introduced nationally but not everyone follows it. It was moved to its current 'optional' schedule in 2005 to save more electricity. But there has since been a study that says it only saves 1% at most. That shows what a smart idea it really was.

Gee that's a lot of interesting factoids but it does not help cope with reality. Since last night was 'fall back' I am supposed to be more rested today as I got an extra hour of sleep. But I slept really badly last night and am up early thanks to the (damn) cat who wants breakfast according to his stomach, not according to the clock. And have you ever tried to train a cat? Today I am not more rested which I can only assume is due to (ever-so) slightly overdoing things yesterday. Tomorrow I will move into crabby.

Tonight my body will say 'stay up until the old bedtime' which means instead of going to bed at 930 or so (I am an early bird) I will want to go to bed at 830 which is the bedtime for 8 year olds. This means I will force myself to stay up later than my body wants. Tomorrow morning I should get up at 530, according to yesterday's time, but that means I will wake up before the alarm. This will cause lack of sleep and I will end up being crabby - too bad I have to go to work all day tomorrow.

Small children and pets do not understand this business of time change. Explain that to any two year old who's nap and bed time are an hour later than they think they shall be. The two year olds turn into space aliens. The pets become annoying.

I will go spend my day looking at clocks and timers and try to figure out if they are on old time or new time. It used to be you had to reset everything, but now with atomic clocks, the internet, and DVRs which display the time, some things automatically reset themselves. And if your spouse goes around changing the time on some things and you do as well, do you actually end with clocks in the old time, the new time, and the 'turned back twice' time? Its as if you were living in three time zones.

I'm not really sure if we are on daylight saving's time or standard time. I never remember which is which. I just know I will be tired, crabby from lack of sleep, and not really sure what time it is for the next few days.

They aren't supposed to run out - they might lose customers

This has been a growing problem in the past few years that is finally receiving some news. At one point late in 2010 there were more than 150 prescription drugs in short supply in the US. This is not surprising. They are a manufactured item just like a lot of other things. Reasons for this were given as:

- source materials no longer available
- quality issues closed manufacturing plants
- no longer profitable to manufacture

Drug companies as we are aware are businesses looking for profits (well duh!). They are just like any other company. The problem goes back to the long development and approval processes to get new drugs to market - or so they claim.

Now the president is stepping in sign an executive order to: "to help reduce a growing number of prescription drug shortages while protecting patients from possible pharmaceutical industry price gouging."

I wish people could play nice in about this and keep their life saving medications available at all times. To all those people who are wishing for smaller government, can some one please explain why the pharmaceutical industry are all about profits and not about the patients who are actually their customers?

Poor customer service - i.e., shortages - will drive away customers. A doctor isn't going to prescribe something that has availability problems. If I am on a life saving medication and they run out, I may switch or I may die. Either way they lose me a s a customer. Hmmm....so maybe its in the manufacturer's best interests not to have shortages.

Getting a good night's sleep

A good night's sleep is supposed to be critical to our health, especially when we are ill or recovering from surgery or some other medical adventure. However the worst place to get a good night's sleep is in a hospital. I have had many 'wonderful' hospital stays - some planned and some unplanned. I never get a decent amount of sleep while I am there.

I think I can get more sleep squished into coach on a transatlantic flight full of screaming children - 9 hour Miami to London flight full of more than 120 children (really) while seated right in front of the flight attendants area where they sat and chatted.

Some of my good night's rest in the hospital have included:

Being admitted through the ER and having to wait until 4 am to get to an empty room. The nurse was very nice and asked me very few questions and said she would come back later to finish them so I could get some sleep. Ten minutes after she left, the blood work tech showed up for a blood sample, and then a visit by someone - every 20-30 minutes for the next few hours. The nurse was good - she didn't come back but everyone else did - the call for breakfast food, delivery of breakfast food, maid to sweep floor, someone for vitals, the doctor, etc.

After my hysterectomy, I had expected to recovery for five nights in the lovely hospital. Yes continuous interruptions every night - including the night they insisted on buffing the hall floor outside the patient rooms. You should have heard the nurse read the riot act to the poor man.

When ever I am hospitalized I try to minimize disruptions and noise by keeping my room door shut at all times. It is my prerogative and you bet I am going to use it. When someone walks down the hall, they always seem to glance into every open doorway.... I find it a horrible invasion of privacy. And with a closed door, a lot of the noise is minimized.

So why do they keep us in hospitals these days? Thanks to insurance companies we are kicked out as soon as possible. They are full of germs as well. And they certainly aren't quiet. I am always happy to tell the doctors that I want to go home as soon as possible and I can turn in to a horrible patient when cranky from lack of sleep. I miraculously feel 1000 times better as soon as I can get a good night's sleep.

Put it all in perspective

Yesterday I blogged/whined about the latest study on breast cancer risk and alcohol consumption and the point that moderate drinking helps prevent heart disease. This of course leads to confusion and rebellion by women with breast cancer. 'Damn it we had cancer, don't take away our wine.'

But a friend, who has a doctorate and works in public health made the point that:

'You are more likely to die of heart disease if you don't drink a few drinks a week - and heart disease is far more prevalent.'

This reminds me we need to keep all these studies (a/k/a attempts to confuse the patients) into perspective. When we hear about these studies, we need to ask a few key questions:

- How many people were involved in this study and over how long a period were they followed?
- How prevalent are the ailments being discussed?
- What is your actual risk of getting the ailment in the first place?


So if the study was done on ten mice and they were followed for one year, how much significance would you give it?

And in this case, heart disease is the number one killer in the US. Breast cancer, while not a minor ailment, is much lower on the list. 

Also, there is only so many things I can do/eat/drink/not do/not eat/not drink and retain my sanity. In this case, my perspective is that heart disease is more prevalent and I am opting for the heart disease side of the study. This means I'll drink.

Finally, all these studies tell me that there is so much that is not known about cancer and its causes as they keep coming up with conflicting results.

More confusion

There was a new medical study (of course we needed another one) that offers advice for women to reduce their risk of breast cancer. This study says even 3-6 drinks/week can increase a woman's risk of breast cancer. That seems straightforward - don't drink and you can reduce your risk of getting breast cancer.

But here's the confusing part:

"Because moderate drinking has been associated with a lower death rate for heart disease, Chen said women should weigh the risks and benefits of drinking based on their own health histories."

So make a decision: drink and you are less likely to get heart disease but are more likely to get breast cancer, or don't drink and you are less likely to get breast cancer but more likely to get heart disease.

To all those politicians who claim there is an evil plot out to get them. It is true. There is an evil plot out to get all of us. It is run by a vast conspiracy to confuse us all. They are hoping they can confuse us into submission as we sit there and try to decipher all those 'so called' medical studies and get stuck comparing their recommendations eternally. Which recommendation is going to prove to be right in the long run and won't be disproved by the next study - that is the real question we all have.



I give up. I'm going to live in a cave and be confused. But I can age wine in my cave (and I'll be out of the sun so I can help prevent skin cancer). And I'll eat fried food daily, with a salad on the side, and take my fiber supplements.

Who owns the genetic tests

As genetic testing gains ground as a way of learning if one is at greater risk of a hereditary ailment, shouldn't the testing be available at multiple labs? This would allow for competitive pricing and more importantly - a second test to confirm or refute the original one's result.

Using the BRCA - breast cancer gene - test (BRCA - say it as bracket but with an 'a' instead of an 'et' on the end so you don't have to feel stupid saying the letters B-R-C-A) to determine a woman's risk of hereditary breast cancer as an example, currently there is only one lab who does all the testing in the US. They hold a patent on it and are ordering other labs to cease and desist in offering the same test. They made $350 million last year and charge $3000 per test which may or may not be covered by decision. As a result of the test, you get a score telling you how likely or unlikely you are to develop the hereditary breast cancer. One end of the scale is very high risk and the other end is very low risk - leaving a middle full of 'maybes.'

If you get a maybe, you have no way of getting a second test. You have to rely on the one lab to have been accurate when making a life changing or life saving decision. I am sure they do their tests following all proper protocol but there is always a margin of error - a bad sample, lab tech having a bad day, etc - there is always a degree of subjectivity that can influence what should be a basic test.

As this article explains:


"The BRCA1 gene was discovered by a Berkeley research team led by geneticist Mary-Claire King in 1990. Over the next few years, scientists raced to sequence it. Myriad’s got there first. But did the company’s work in isolating and cloning the gene transform it from a “product of nature” (which can’t be patented) into an “isolated composition of matter” (which can)? The ACLU – together with about 150,000 patients, scientists, and medical ethicists – contends that the answer to this question is no.

In 2009, the ACLU filed suit against Myriad and the US Patent and Trademark Office, arguing that the company’s BRCA patents are invalid and unconstitutional. In 2010, a New York federal court decided in favor of the ACLU, but this July, that decision was overturned by the US Court of Appeals. “Cleaving” the gene from the body, that court found, renders it eligible for patent protection. The ACLU now intends to bring the case to the Supreme Court."

In the meantime people are making life changing or life saving decisions based on this one lab. And the real question it comes down to is are their patents hindering research that could help save lives of others? Researchers should work together but the patents that Myriad seems to be hiding behind are impeding the collaboration that could greatly speed up break throughs.

Genetics are not something that are made, they are not created, they are part of nature. So why can they be patented? When do patents become things that stop research instead of helping it? Why can't Myriad's researchers collaborate with others? Let me take a wild guess - someone is only interested in the money.