Awareness

Yesterday as I was driving home from work (early of course because my evil cold is not yet gone) and listening to the radio at the same time (does that count as distracted driving as I was doing two things at once?), there was a public service announcement that came on for lung cancer in women. It gave a few statistics:

• There will be approximately 226,000 cases of lung cancer and 229,000 cases of breast cancer diagnosed in the US this year.
• There will be approximately 160,000 deaths from lung cancer and 39,000 deaths from breast cancer in the US this year.
• Nearly twice as many women will die from lung cancer than will die from breast cancer.
• There are no ribbon walks, runs, awareness, yogurt lids, hats, and all that for lung cancer.

It was a very poignant PSA and I wish I had paid more attention to the beginning. It did grab my attention as it made some very strong points. We have plenty of breast cancer awareness out there. We don't need any more. We need

• Awareness of other types of cancer
• Research for a cure for all types of cancer
• Fewer pink ribbons

I think when we get an 'icky' diagnosis, we tend to focus on our ailment and not on any others. I know where my focus is: breast cancer and thyroid cancer. But I am very familiar with many other ailments - a friend's husband has stage IV colon cancer, a high school friend has MS, my mother has rheumatoid, and the list goes on and on. But I know I focus on myself and my health issues. I do need to take a step back and think of other ailments.

I live in the little microcosm of the pink breast cancer world which is populated by women with their pink ribbons and strong sense of humor. My little world also includes a growing community of thyroid cancer people which is a cancer with one of the fastest growing incidence rates. I was lucky both these cancers have relatively good survival rates. Lung cancer is one which does not. We tend to forget the statistics that others face. That is the awareness we really need.

A social obligation

Do hospitals have a social obligation to help more patients? This is an interesting concept. Hospitals have '“a social obligation to provide access to care,’’ said Dr. Timothy Ferris of Partners HealthCare, the parent organization of Mass. General and the Brigham.'

In the future doctors will be compensated on the care of the patient and given a budget per patient. If they have a larger patient pool, they create more wiggle room to allow for sicker patients. Patients will also need to have a primary care doctor. But there has been a long term shortage of primary care physicians and existing doctors are very prone to be overworked. It can be impossible to find a doctor accepting new patients. This is a nationwide problem but here in Massachusetts a few hospitals are starting to address the issue.

First of all, they are hiring more nurse practitioners and physician assistants to create teams so a patient can be seen by someone in the group. The doctors do less of the well baby, blood pressure follow ups, and other minor issues and can focus on the sicker patients or more complicated visits. Next, doctors are opening up their practices to allow for new patients but are evaluated not just on the number of patients they have but also on how sick they are. A doctor who has many patients with multiple ailments is credited for that.

If they do accept more patients, they will be paid more by the hospital. The "... hospitals are tying about 10 percent of doctors’ salaries this year to the size of their practice and the complexity of their patients’ illnesses." I think this is a good idea as long as the hospitals support them and follow through with their plans.

I think that doctors have felt overworked and would do one of the few things they could do to prevent more overwork by closing their practice to new patients. That makes sense but then it helped create the shortage of primary care physicians as there were fewer and fewer accepting new patients. There had been a lot of discussion on how to fix this shortage but now I think this is a plan which could work.

They have something backwards

If health insurance companies have increasing profits, how do you think they should react? Should they reduce premiums or at least reduce the premium increase, or should they give their executives big pay increases? I think most people will vote for the first option and the only people who would vote for giving the big pay increases would be the executives who receive them - and probably approve them as well.

This announcement came out last week: 'Capitalizing on fewer people seeking medical care and submitting claims, the state’s four biggest commercial health insurers posted sharply higher earnings for 2011 while their executives collected more pay, according to reports released yesterday.'

'“We’re trying to maintain the affordability agenda,’’ said Allen P. Maltz, chief financial officer of Blue Cross, who cited the Boston-based insurer’s 2011 operating margin - the percentage of money it makes from its revenue - of 0.7 percent. “We’re doing our best to return the good results to our customers and not see them drop to the bottom line.’’'

Now that's a lot of hooey.

'But a consumer advocate said the more favorable trend in health care costs should be resulting in lower premiums for employers and individuals, not just less burdensome increases.

“Premiums are still increasing, and they’re already too high,’’ said Deirdre Cummings, legislative director for the Massachusetts Public Interest Research Group. “This is the same dance insurers have been doing for some time, and this is what consumers are frustrated by. Insurers are reaping the benefits that should be going to consumers.’’'

Now there's something I agree with - we, the patients, are all frustrated.

After reading that article I then read one on moral decision making where the concern is really: 'It doesn’t just matter what people do but why they do it and what’s going on in their heads when they do it.' It also talks about the differences between normal people making decisions and their feelings about them as compared to psychopaths who are less concerned with the outcome and how it affects others.

Psychopaths are highly forgiving of accidents. Ordinary people find it really difficult to forgive accidents in some cases, because you can’t deny the fact that harm was caused. If someone sent you a computer virus and it messed up your computer, even though you know they did it completely by accident, you still have a really hard time forgiving them, because of this gut emotional response. Psychopaths have a blunted emotional response to the pain and suffering of victims even of accidents. That results in them being especially lenient in these cases.

This may explain why we are so unforgiving of those who do us wrong - meaning insurance company executives and the former friend who sent us a computer virus. As we struggle to pay our ever increasing health insurance premiums and balancing between food, mortgage, and premiums, the executives are making the big bucks and taking month-long tropical vacations. Even if the amount is miniscule - $500,000 pay increase to an executive might only result in $0.25 savings per premium payer but all those little things add up.

I think they have something backwards. They are not making moral decisions in these pay increases. They are taking the looking after  1 a little too far.

I am undecided

I am undecided today. While I wish there was a cure for cancer (wouldn't that be nice?) I also wish there was a cure for the common cold. I am in day 5 of an evil cold. I have been doing all the right things. I first felt bad on Wednesday and was in my pajamas at 5pm,  in bed by 7, with the light out by 8. Thursday I stayed up slightly later. Friday even a little later. Yesterday I decided to pretend I was healthy and made it through 30 minutes at the gym and a trip to Costco. Today I woke up at 130am all congested, and no I did not get back to sleep. (I may slip into crabby mode a little later as a result.) In December I had another evil cold for 16 days that interfered with all my holiday preparations. I am getting a little fed up with this health business interfering with my desires to have a normal life.

Why can't there be a cure for both the common cold and cancer?? That would be the perfect world. Actually there are many medical ailments out there that could use a cure. And, no, there is not an evil conspiracy by the government, aliens, giant corporations or anyone else to make money off the rest of us while hiding the true cures for all ailments. Nor will you be healed by clicking on a link or sending $100 to some 'dude' somewhere  who has discovered the cure for whatever ails you - and you know this because he sent you an email where your name was only slightly misspelled.

Maybe what we all need to tide us over until the cures are found is a reverse voodoo doll where we can stick pins in it and relieve our symptoms. I don't know I'm clutching at straws here or having a pipe dream or whatever, but frankly I am sick of being the patient patient who goes from doctor appointment to doctor appointment. I am really just sick of being sick.

That Supreme Court Case Explained

Or its a good thing I am not a lawyer... I find this very complicated. You know that Supreme Court case where they are going to hear six whole hours of arguments on the new health care law and then make a ground breaking decision. If you read the article it is a brief summary of something that is very complicated and citing laws going back over 130 years and deciding if it is a tax or not.  The two contended issues are mandating Americans to purchase health insurance and opening Medicaid to more people.

The Supreme Court gets to decide:

• If this is a tax and if it is a tax it can't be disputed until after it has been in effect so the whole thing would be put off until 2014 or later.
• Then if it is not a tax, then is it legal for Congress to require people to pay for insurance or pay a penalty and it might be an intrusion on individual liberty.
• Next if it is unconstitutional can this requirement be split from the rest of the whole health care reform act. 
• Finally they get to decide if the Medicaid expansion is unconstitutional or not.

I find it pretty amazing that this can be settled after only six hours of arguments and then the Supreme Court justices get to go think, talk over coffee, play basketball, or whatever it is they do and a decision will be announced and life will go on. Until another big issue is brought to the Supreme Court.

I once visited the Supreme Court. I worked for a legal non profit which was part of ACLEA, a legal education organization. They had their annual conference in Washington DC and we got a special tour by someone important at the Supreme Court, but not by a justice. I learned all sorts of fun things about the Supreme Court.

• They didn't have a court house until the 1930s. They bounced around different places in Washington DC.
• The newest member of the Supreme Court gets to be the secretary and take notes for the rest of them. If you think about it - it can be 20 years or more between each new justice and that's a lot of note taking. (So next time one is sworn in, listen for a big sigh of relief from Washington.)
• There is a higher court that the Supreme Court. There is a basketball court upstairs. (See wikipedia for proof I'm not making this up and check the notes on the fifth floor.)

But I digress. This is a big case, which is why it gets six hours instead of a lot less, so we should all pay attention to its outcome.

What is this new normal business?

You get cancer, have all sorts of fun medical adventures, and then are supposed to reach your new 'normal'. Isn't that some sort of oxymoron? I mean normal is defined as:

Adjective:	Conforming to a standard; usual, typical, or expected.
Noun:	The usual, average, or typical state or condition.

So if you were normal before (not that any of us are really normal), you are supposed to become normal again but a different kind of normal that is now your new normal. Does this mean I have to consider myself abnormal before? How many times do you get to have a new normal? Am I now in my third normal since I had two cancer diagnoses?

Or is this a lot of hooey designed to make us feel better? Life is full of life changes - everything from moving, changing jobs, getting married, having children, icky (for the lack of a better word) medical diagnoses - that we change and cope. We are constantly evolving and adapting to the changes in our lives. Darwinism lives as we adapt to the bumps in the road of life. So where is this 'normal' they (and that would be the mysterious them) tell us we should have? Are we supposed to pick a point in our lives and say 'I was normal then'?

These life changing events are just what that says 'life changing' you can't go back and undo them. 9/11 changed the country and can never be undone just as cancer changes individuals. Is the goal of finding a new normal unattainable? When do you know you have reached your new normal? Is there a little sign in the road of life? I say skip this normal business and focus on adapting through changes.

Allow me a tiny bit of gloating here

I've been saying it all along and now I have proof. I claim chemo brain and plan on claiming it for the rest of my life. Now there is a study (because of course we needed another study) that chemo brain can last for 20 years. Of course they are saying well it could be that earlier chemotherapy regimens caused more damage than newer ones and that maybe hormonal treatments might also contribute to chemobrain. But I don't care. I get to gloat a tiny bit.

But chemo brain is nothing to laugh about. Not remembering words, using the wrong words, and more are little aggravations but when they happen all the time, they can interfere with your quality of life.