I Am Entitled To Change My Mind

Most days I blog about what is on my mind and it just sort of  pours out of me. Sometimes its in reaction to something I saw, read, or heard. Sometimes its just what is on my mind. And sometimes I change my mind. Sometimes I read my blog again and think about what I actually wrote.

Yesterday, I blogged about changes I could make and a week ago I blogged about how I am done making lifestyle changes. And I realized I totally changed my mind. But then I realized I didn't. I am ready to make changes that other people tell me to do. And I am ready to make changes that I want to do. I don't want to be told what to do. I am an adult after all. (I realize some people may disagree with this - about being an adult that is.)

I like to make my own decisions about me. And I am kind of sick of doctors telling me what I am supposed to do and needing to know every detail about me. The worse your health is the less privacy and modesty you have. Doctors make all kinds of decisions for you - eat this, not that, let me stick this needle into you, you will only feel a pinch, etc.

So I am done with being told what to do, or have it suggested to me.... I am going to make my own decisions.

Patient vs Doctor

I often write about what its like to be a patient. Well, not just often, more like all the time. Why? Because I am a patient who is a frequent flyer at the local hospital. Sometimes I know more about the hospital than its employees.

As patients we go through our medical adventures and misadventures and move on. That nasty test is over. The bad results are digested and a treatment plan comes along. We have our emotional highs and lows and we keep on going.

We hear about the potential risks and problems at each treatment. We hope for the best and sometimes cope with the worst. We develop ways to cope and move on and grow.

But what about the doctors and nurses and other medical professionals? I have never really stopped to think about them and how they cope.

First of all in their jobs, every day is like Groundhog Day. They must deliver good and bad news, administer tests and watch their patients react. They help cure and heal some patients, and are forced to watch others slip away. That must be incredibly difficult. It must represent a failure for those who took the oath to 'do no harm'.

They work hard to help their patients and then some they can't help. So what is your job? Engineer, cook, parent, soldier, butcher, baker, candlestick maker? What if what you make is a total flop? How does that make you feel? But what if its not just a flop but someone loses their life?

And what about the further burden of a patient who follows their advice to a T and still doesn't make it?

The emotional toll must be incredible. I could not imagine. And I had never ever thought about it until I read this article on a doctor who writes prose and poetry as an emotional outlet to cope. That's not that much different from being a patient.

Just because, doesn't mean 'right this second'

When you get medical, or any other kind of, bad news, the first reaction is "FIX IT NOW BEFORE I DIE!!!!". You then start making decisions as you learn about your choices. And proceed to get your life back.

But.... What if the news is wrong or has been misinterpreted? Then what?

This is especially true now with BRCA and other gene testing advances.

"In a paper published in the Journal of Clinical Oncology, the Peter Mac team has demonstrated that some genetic tests for breast cancer may be misinterpreted, potentially misinforming the affected families and risking unnecessary preventive treatments.

“It is now possible to screen a large number of genes at the same time – known as panel testing – at a fraction of the cost previously required to sequence just one cancer-causing gene such as BRCA1,” according to Professor Ian Campbell, Head of Peter Mac’s Genetic Cancer Research Laboratory.

“Understandably, this has increased demand for such tests amongst health care providers and patients concerned about their family history.

“However, while the increased risk of breast cancer associated with some genetic mutations is proven, for others there is a lack of robust scientific data to suggest preventative treatments are required.”"

There is a fair amount known about the BRCA genes and their impact on a patient for increased risk of breast cancer or other ailments. But not as much for the other genes. So you do not want to start making a lot of decisions right away. You do n't want to treat the information about other mutations the same as BRCA mutations. I guess the message is that you need to educate yourself on what you are being tested for before you make decisions

Choosing the advice to follow

I get a lot of advice on how to be healthy. And I find even more in the media. So my problem is which pieces of advice to follow and which to ignore. I finally have made a decision. I will only follow the advice I like.

For example, if advice includes eating more dark chocolate, count me in. But if it says eat more tofu, no way. This morning alone I have seen advice to drink more coffee to protect against breast cancer recurrence, vegetarians should eat more fish to prevent colon cancer, and cereal is a superfood.

I am not a vegetarian but we do eat fish at least once a week. I am drinking coffee as I blog. I did try some instant oatmeal (not something I usually eat) this morning but apparently it had been in the pantry too long and is now in the trash. I am having Icelandic yogurt and a banana instead.

I get so much advice, I feel overwhelmed at times. I get too much advice. Every doctor gives me advice. Friends give me advice. The media gives me advice. I give up. I think I am smart enough to make my own decisions now and will continue to listen to new medical advice but am done trying to follow it all.

Debating the right to die at home

I am sure you have heard of the story of Brittany Maynard who died  with help from a prescription at home after a horrible cancer diagnosis. The real story includes he fact that she had to move from California to Oregon to do this.

Now there is another woman who is suing California for the right to die at home, and not have to move out of state to do so.

I strongly believe in the right to die at home, on my own schedule. I do not want to die full of tubes in some uncomfortable, impersonal hospital bed. When I get to the bitter end, I want to be home with a few selected people. 

If I get a diagnosis like Mrs. Maynard did, I would definitely want to be able to choose when I die and have the option to make that decision.

But I can understand why others do not share the same beliefs.  There are religions who believe in the sanctity of human life. There are others who would not want to because they want their doctors to keep trying to save them.

All I want is the right to make the decision by myself. If my health took a horrible turn from which there is no treatment, I would want to be able to consult with a doctor and a psychiatrist to make the decision and get the prescription to make the decision on when. I would not want to have to file a lawsuit to be able to do so.

It should be a matter of choice, not a legal issue.

Why should care needed at a second cancer diagnosis need to be debated?

Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any  different than any other cancer diagnosis?

As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.

When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.

Being decisive

I woke up this morning and think (so far) I am in a decisive mood. This doesn't always happen. I can waffle with the best of them. I have been doing a lot of that recently - waffling (but not eating waffles). I have been juggling some decisions recently and think I have finally decided its time to make up my mind.

Some decisions are not that big - changing our home owners insurance policy for example. Our old insurance company is just a pain in the neck to deal with so a change is needed.

Other ones will require some work - I really am going to lose weight - and won't happen overnight. I caught a glimpse of my flabby stomach this weekend and decided it really needs to go away. My problem is that there is limit to how much activity I can do before I have to take it easy for a few days to recover.

Still more decisions will require some confrontation - which I really detest - but in this case its needed. I am not ready to talk about that one yet, maybe I will later.

Unappreciation is taking its toll on me and I have to put an end to it. Its one thing to work as a team but another thing when the communication evaporates with no explanation. It makes one feel unwanted. When its chronic, it needs to end. I don't want anyone to think I'm leaving my husband or something because I'm not. He's stuck with me. Its a different issue completely.

I'm also going to clean the car and pick up the living room. Our downstairs bathroom is a construction zone again. The mess generated by construction gives me urges to clean other things up so there is one area I can be proactive. I can accomplish a lot in 30 minutes of dedicated cleaning. Besides cleaning will make me stop thinking about confrontation, and ailments, and flabbiness. But I can still be decisive.

After rereading this post, I decided I am being vague inmy decisiveness but that is what you get today.

The Cancer Decisions

Back in the dark ages of medicine in the 1980s and earlier or so, doctors were gods. They gave us a diagnosis. Told us what our treatment was going to be. We didn't have to make any decisions as our doctors told us what would happen.

Now in 2012, our doctors tell us our options and we make informed decisions based on the advice we have received. That way our wishes are included in the treatment plan...

Wait just a minute here, we have to make informed decisions which means we must do work and figure out what we want? What happened to the easy days of the past where we got to sit around as the patient and be cured without any work?

How are we supposed to make these decisions? What if one of our decisions turned out to have as good an outcome as we wanted? Now our stress level goes up! What to do? What if I was wrong? What if I didn't understand fully all the possible outcomes? Oh, no........

A person with a cancer diagnosis is given treatment options and needs to make decisions which could determine their life span, based on what their doctor tells them and they learn elsewhere. It becomes highly stressful. Should I do chemo, then surgery and then radiation? Or should I opt for radiation followed by surgery? Or should I skip chemo and go straight to radiation? There are too many decisions!

This happens all the time. I see it on message boards everywhere.Also, a doctor has blogged about it on Cancer Realities at WebMD.

Doctors are now encouraged to involve patient wishes in their advice. Patients are becoming more and  more informed. But these decisions can be very difficult to make. A patient can be faced with regrets and fears - "what if I made the wrong decision and it comes back and kills me?" This is an added pressure.

Where I am treated, after my breast cancer diagnosis in 2007, I had a day where I met with the surgeon, medical oncologist, the radiation oncologist, and a social worker. At the end of the day, they came to me with a treatment plan and an explanation of the options they had considered. They wanted my opinion - what I was stressed, shocked, scared, and more -  was I comfortable with their recommendations? I actually felt relatively calm about it as they presented a group recommendaiton to me.

This is a far cry from my  thyroid cancer diagnosis in 1981, the technology wasn't there to help determine whether the lump they felt was cancerous or not. They just told me they were removing it so they could see if it was cancer or not but they really felt because of my age and thyroid cancer's then rarity that it was probably just a goiter.... There was some comfort in being told what to do as opposed to making any decisions.

Do I like making the decisions in my treatment? Yes. But some are definitely easier on my brain than others.

Hospital advertising

I have wondered why hospitals seem to spend more and more on advertising. Radio, tv, bill boards - they seem to be increasing more and more. I haven't figured this out until light dawned on me - some marketing person or advertising executive convinced them they needed to advertise.

Let's take a poll here - who chooses their medical care based on a billboard or tv ad? One vote here for no. I put a little bit more research into it than that. I might ask my doctor, ask friends and family, consider how long the drive would be (because of my inherent laziness), and maybe even go look at their websites.

This morning while watching the news, an ad came on for some hospital explaining breast tomography and how good it was at detecting tumors. So therefore you should go there for breast tomography. But they forgot the important point of why tomography - is it instead of mammograms? Or if you have a 'bad' mammogram? It didn't entice me to go there at all.

The news was just interrupted by a commercial advertising another hospital's cancer center. Every hospital seems to be advertising their cancer center more and more. Why, do they expect us all to be diagnosed and come running to them for treatment because we saw them on TV or on a billboard? Cancer center's seem to be the latest fad in hospital advertising. Everyone is getting one.  So it becomes an unending game of one-upmanship.

I am  a marketing person so I understand there can be many purposes to advertising - image enhancement or promotion for a sale or event. If they are focusing on enhancing their image, I'm not sure that tv ads are a good way to spend the money. TV ads are expensive to start - you need a budget that is a upper five figures to start. Maybe they could spend some of that money on patient care instead of advertising.

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.

There's no 'I' in team

Many people when faced with an 'icky' (for lack of a better word) medical diagnosis, are sent to a specialist in another practice or medical facility. The problem with that is then there is no team work in the care. The primary care is in one place, specialist in another, surgery is where, chemo where, radiation where? You add it all up and you get patients bouncing from one office to another carrying disks of medical records and getting confusing and/or conflicting information that they need to decipher.

I always thought this was a crazy system which is why all my care is in one hospital. I do know people who are generally treated at that same hospital but at the first sign of cancer, fled to the 'specialized' cancer centers in Boston. They are doing what is comfortable for them at first but then they end up juggling medical advice.

I can't remember what exactly happened at my first diagnosis but I do remember seeing both an endocrinologist and a surgeon and having follow up with both. But that was 30 years ago so I can clearly claim chemo brain.

But at my breast cancer diagnosis, after a positive biopsy with my surgeon, I had a day of doctors - my team of breast surgeon, medical oncologist, radiation oncologist, and social worker - all got to talk to me separately and then they got to talk about me and decide as a team what would be my treatment protocol. And all through my treatment they still talk to each other and read each other's notes.

Now I find out that this team approach results in happier patients. They had to have another study to prove this (but if all these damn medical studies stopped I think there would be lots of unemployed researchers.)

At my breast cancer diagnosis, I was in a fog. My husband was in a fog. We barely knew how to breathe, never mind think and make life changing decisions. This process of a group decision presented to my husband and I was a big comfort. It gave us both the short term - surgery, middle term - chemo, and long term - tamoxifen/AI and radiation. The social worker also gave us some emotional help and one of the best pieces of advice - don't try to figure out the whole process now, take it step by step.

Through that first year, the doctors did talk about me and at appointments, I would hear about a discussion with another of my doctors. Because it was a team effort, I didn't even see a doctor's ego! It was a nice virtual security blanket.

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.

Decisions, decisions, decisions

Yesterday's post generated a few comments on Facebook so I decided that I wanted to write more about decision making in medical treatment. You have an ailment, you go to the doctor, and they tell you what they recommend. It is your choice to follow it. You are a mature adult and you can decide what you want to do to your body.

However it is your obligation to make a good decision. A good decision is defined as one that is based on a rational decision making process. You can ask your doctor what the side effects would be or the pain level of the 'medical adventure' or whatever else you want to know. You can get a second opinion. Or you can do some research on your own - online at credible websites or through other medical professionals or even people who have gone through the procedure.

You should also put some thought into the big picture. Yesterday's example was that of a woman who is refusing chemo because she didn't want to lose her hair. This was a potentially life saving treatment being refused because of a minor side effect. But if you are having chest pains and the doctor says you need a bypass or you will not survive through any more stresses on your heart and you choose not to follow their advice. You need to realize that this could kill you.

I know numerous people who have chosen to skip traditional Western medical treatment and have gone with alternative medicine, modalities such as acupuncture or reiki, or diet modification. They are happy with their decisions and credit them with saving their lives.

Yes it is your body and your choice as to what you want to do. I guess my point is that you make your decisions as you want. If you don't change your behavior in someway - through medical or other treatment - your health isn't going to improve. A decision is an action. An action causes change. An inaction does not result in change. But a bad decision that is done without thought to the consequences is just as bad as indecision or inaction.

Do not change your mind!

I am talking to you medical people out there who take care of us patient people. I know you do all kinds of studies and trials. That's fine. Progress is good. But please do not change your mind and tell me the treatment I had was either wrong or useless. Please work on the delivery here, and tell us that what was done previously was not wrong or useless but the best possible treatment at the time. Progress has allowed the development of improvements. If you tell us patients that that the treatment they received was wrong or useless, we are not happy. It is in fact upsetting. So stop it!

I was diagnosed with tennis elbow in November. I was given a cortisone injection and given a wrist splint, told to rest it and sent for PT/OT. After a few weeks I was sent home with a series of exercises - stretch out the tendon and work up my strength and blood flow to the area by raising and lowering 1lb. weights. (Yes - one pound weights - look at me at the gym with everyone else pumping iron and I am working with one pound weights. Just kick some sand in my face and move on.)

Now its back. Not as bad as it was and I don't call it tennis elbow, but cranky elbow. There is a new study showing that skipping the cortisone injection and rest are actually the new solution. So I wasted some time trying to 'heal'. They suggest eccentric exercises - I'll have to research this one and figure out what I should do. In the meantime I'll keep pumping my 1 lb. iron. But please don't tell me you are wrong again.

Decision making

I make my own medical decisions. I do. I make decisions about lots of things (my husband says we always end up doing what I want but that's another blog post) but I feel comfortable making decisions. When it comes to medical decisions, I usually make a decision when first proposed to me and do not opt to go home and 'sleep on it' or research the hell out of it.

Dr. Berk had an unfortunate bike accident that resulted in a spinal cord injury. He partially credits his return to health as a result of the involvement of his family in the decision making process and how it made them stronger as a family.

Granted, the decisions he dealt with are different than the ones I have been making. I often make my own medical decisions, sometimes I consult my husband but usually I just act. Its my body and I get to decide what is best for it. Last year, when my husband was dealing with the fact that they couldn't get clean margins on his polyp removal, I bit my tongue and let him decide what he wanted.

Now are we wrong? Should we consult each other on each decision? We did get married until we were in our 40's so were used to making decisions on our own. We communicate but make our own decisions. However we are about to under go so house renovations - these decisions are under a microscope here as to what we want to have for a kitchen counter top, kitchen floor, how funky the bathroom tiles can be, etc. This is a different kind of situation for us.

I think if we can accept each other's medical decisions, we are okay with how we handle things. Home improvement is another story.