Stem cell research

I am not getting into the politics or the morals of stem cell research here. Those are separate issues. This is not a platform to discuss those.

I am writing about stem cells. I am not any kind of scientist (as anyone who reads this will know) but I find it really cool that stem cells are blank cells and can become any kind of cell in the body. I mean when an egg is fertilized then cells begin to split and divide and eventually (please skip any discussion here of when it becomes a person) turn into a being (we can change the topic here to discuss the embryonic growth of a mouse if needed). Also, embryonic stem cells are only one kind of stem cells, there are others apparently. I learned this little factoid somewhere along the way.

But back to my original topic stem cells are blank slates. They are cool and if using them in research can help find cures for cancer and all sorts of other medical nastiness, then great, keep using them in research. Take the point of view of someone who's life is spent dealing with cancer, I wouldn't mind a cure.

Cultural Competency

What is cultural competency? Well I could google it or look it up in wikipedia but its too early in the morning (and I am slightly distracted because I really want to see Kate's wedding dress). Therefore I will define it as I understand it.

In my opinion, cultural competency is being informed on other the socio-economic and culture issues of cultures other than the one in which you grew up. For example, is a big city person familiar with life on a farm? Or someone from suburban American familiar with life in a third world country? And its not just being comfortable with the other lives but aware of the differences in life style, social constraints, religious pressures, economic quality of life, etc. And to understand that these differences are theirs and you cannot force them on you.

There are thousands of examples of this but a few are - here in the US almost everyone has access to clean water and we dont necessarily understand that others do not and its implications.

Being culturally competent is also important to doctors and US medical schools are finally becoming aware of this and will begin requiring it of medical students. They want fewer science nerds and more of the fluffy stuff.

I think this is a wonderful idea. I don't want a geek to take care of me, I want someone who has a clue of how life really is. They can be a geek too if they want. Just because you went to medical school, doesn't mean you are any better than me, or your way of life is the same as mine.

I mean how often have you run into an older doctor who is 'old school' in their practice and thinks that they are a god and you are supposed to kiss their feet and do what they want. Or a doctor who doesn't understand that your lifestyle is not the same as theirs and you can't quit your job and stay home simply because you are sick or had surgery. Or a doctor who is dictatorial and tells you its 'their way or the highway' essentially. Or a doctor who doesn't understand a welfare mother can't afford fresh fruit and vegetables all the time.

I know there are different personalities and cultures out there and the differences between all of us are what makes the world interesting instead of boring. However a doctor who makes lifestyle suggestions and doesn't understand when a patient cannot comply, not that they don't want to comply but that they are not able.

I have one doctor who is from a different culture where I think opinions are not suggested but are demanded from elders or superiors. I feel she makes demands of me and not suggestions. I don't think she understands how she comes across to her patients. I also don't think she understands that here patients have brains and occasionally use them.

I think if she took a few lessons in cultural competency to realize that I will question her decisions because I do research and think for myself she might be better off. I am ready to vote with my feet and find a different doctor. I want a doctor to accept me for who I am and let me think and question. Maybe she grew up where doctors were gods and now she subconsciously thinks she should be thought of as one?

Cultural competency should be a required accomplishment in medical school (and probably in other areas as well but that's another story). Maybe we would all be a little bit more accepting of each other with more cultural competency.

Call me Chronic

Chronic noncommunicable diseases are the biggest killer worldwide. Chronic is defined as cancer, diabetes and heart disease. This presents an interesting challenge. There are some genetic causes of these but the majority are caused by lifestyle.

I do like this article because it considers cancer a chronic condition - meaning it won't go away but it won't necessarily kill you. Its not a terminal disease. I don't like this article because they say it is a lifestyle disease. Um, I followed the rules most than a lot of other people and ended up with the disease twice. And I have blood pressure/pulse issues right now as a side effect of one of my cancers.

Now there is a lot to be said that the sedentary, alcohol-filled, tobacco-filled lifestyle, can contribute to diabetes, heart disease and cancers but these diseases still affect the marathon runners among us.

Also, it implies we don't have a cure for these so while they may not kill you off, once diagnosed you get to keep them for life (just think of them as gifts that keep on giving).

I admit yesterday I was somewhat lazy but I have an excuse in that PT made my knee hurt so I didn't get to go for a walk. Today I expect to go to the gym and then for a walk (and then to get my hair cut so I can look good while I feel virtuous).

Oh, look another medical study!

I think I could write about a new (confusing/meaningless) medical study every day. Today's study is about if you should keep your ovaries when you have a hysterectomy. Well, now they are saying yes, keep them unless you have a family history of ovarian cancer. This refutes an earlier study about the important of keeping them because of increased risk of stroke and heart disease after they were removed.

So this proves my earlier assumption. If you don't like a medical study, ignore it, another one will appear and complete refute the first. Just for the record when I had my hysterectomy, I kept one ovary and they took the other (because it wasn't functioning) so I don't even know which group I am in any more.

Therefore, what is the most important thing to do to cope with all this conflicting information:

A. Summon your inner three year old and close your eyes and ignore them all.
B. Perform your own medical research and diagnose and treat yourself.
C. Use common sense.
D. Ask your doctor - that means you would spend all your time asking questions.

I usually opt for A with a little bit of D and a tiny bit of B. Common sense? Well, that's what got you to the doctor in the first place.

If you cant cure them, confuse them - a clear conspiracy out there

It is an evil conspiracy to confuse us all. There was another medical study - really? How unusual! I think medical studies are done to confuse people, not to find medical cures. Keep them confused and they will never figure out what they are supposed to do.

Now it turns out calcium may cause a 20% higher risk of heart attacks and strokes for women. So they told us for decades take your calcium, they put it in everything even orange juice, and now they say only take only 1200 mg. And if you have thinning bone issues, you should talk to your doctor about what to do.

I had osteopenia and then upped my dose of calcium per my doctor's instructions and my bones are back to normal. I also have a family history of osteoporosis and being on synthetic thyroid hormones can cause problems in absorbing calcium.

So here we come back to that question of what exactly is increased risk - more likely to have a heart attack or stroke? But what were the odds to begin with? I never understand this part. If you play in traffic you raise your risk of being hit by a bus so is this similar to taking calcium?

So I'll just put this in the category of 'blah, blah, blah' and see what my doctor says when I see her in a few weeks.

Doctors have a history?

Wait, that can't be. Doctors are supposed to be all knowing and medicine should be black and white. This symptom means this, that one means that, and it is curable by this. None of this nonsense of maybe this, maybe that, never mind that once before they saw this and the result was that.

But no, that is not the way life is. Doctors have a history as well. Life is not fair. Doctors go through medical school and then get out in the real world as residents and start seeing patients who color everything in shades of gray. Women and men don't show cardiac symptoms the same way. Heck, every cancer is different - put ten patients in the same room with the exact same diagnosis and then start comparing their treatment protocols, how they reacted them, and their current medical health - nothing will be the same.

Doctors learn the facts in medical school and then learn the gray shades from their patients and how complicated things really are. In some sick way I take pleasure in stumping my doctors with my multitude of issues. But really I would prefer to be healthy. I also want a world with black and white medical answers, none of this shades of gray, with cures for everything.

My annual medical hell day

In a few weeks, I will have a 'wonderful' day. It starts at 8am with the back pain doctor, followed by a mammogram, bone density scan, annual physical, annual surgeon follow up, and something else I can't remember. And my primary care will probably send me back down to diagnostic radiology for a chest x-ray and for some blood work. On that day, I will probably get to get in and of a hospital gown at least 5 times. Maybe I should just show up in my pjs and a bathrobe and stay in them all day. How many follow up appointments will all those generate as well? I think I spend my life going to doctor appointments.

Later today I have an MRI on my knee. Apparently if you need an MRI, the best time to go is on a holiday because no one wants to have an appointment then. I did ask if I wore clothes with no metal did I have to get changed into their metal free clothing and they said I would still have to change. Darn.

I think hospitals could save a lot of money if people could just show up in their PJs and not have to have all those gowns washed all the time. Think of this as a whole new fashion line, medical gowns that you can wear to and from the hospital. The problem would be that some doctors want the gown to open in the front and others want it to open in the back - depending on which part of your body they want to examine.

In the meantime I have homework, I have to prepare my lists of questions for all these doctors and print out multiple copies of my current medications so everyone can get their copy. I shall also summon up my inner three year old and ignore the fact that my hell day is looming.

A Caution on National Healthcare

In some ways, the UK's National Health Service is admirable and in others it is terrible - both provide lessons for us. I will note that from 1993-2002, I used to work for a British company and in countless trips to England had the opportunity to watch the local news on medical issues as well as talk to colleagues about their own personal experiences. In addition, I read BBC online just for an international perspective.

It is admirable in that an entire country gets basically free medical care. NHS basically takes care of one from cradle to grave. It is a great concept and the UK has essentially made it work for decades.

However, a few thoughts on the downside:

- I was in the UK during a particularly bad outbreak of the flu. Hospital emergency rooms were overworked because of the number of sick patients and the reduced staff (because they were out sick). As a result, scheduled medical procedures were delayed to take care of the ill people. Consequently, one woman had her cancer surgery delayed four times until it was too late.

- No one I knew in the UK used the NHS dentists. Apparently they were awful. Any one who could afford it went to a private dentist and paid out of pocket. This just gives me the heebie-jeebies - the idea of a bad dentist poking around my mouth with medical instruments and drills. EEEKKK!

- Although medical treatment was free and available to all, waiting times were notorious. The BBC just published an article about how the waiting times are at an all time high where 15% of patients waited over 18 weeks for treatment. 18 weeks is 4.5 months!

These are some lessons to be learned as the new American national health care program is put together.

The mind of the confused patient

I have decided that when doctors go through medical school, they take special classes designed to 'help' their patients. There must be a special class on how to confuse patients. Sometimes I leave the doctor's office and think, wait, what the heck am I supposed do? I am confused.

Now I really know most doctors mean well and are highly trained and have the patient's best interest at heart but sometimes I think they are there to drive me crazy.

My latest doctor interaction is leading me to question my doctor's thought process. I am on Savella for back pain. This was prescribed by my back pain doctor - Dr. G. Previously I was on Cymbalta and Lyrica for back pain and nerve pain but they also treated my depression. So I went back to my psychiatrist, Dr. S., for a new anti depressant and she put me on Celexa. Well, what do you know but there is a serious warning on the interaction between the two which can cause serotonin syndrome that requires a trip to the ER and can lead to death.

The pharmacy doctor tried to explain this to her. She said no, one of her colleagues had a patient on both and they should be fine. She claims that they don't see the big picture. I went back to see her this week and told her I was not comfortable being on two drugs that have interactions and other doctors are telling me not to take together. She agreed finally with me that if I was not happy she would switch me to another drug. She switched me to Wellbutrin so I followed my normal logic and went home and looked it up. If I take Savella and Wellbutrin together there is a major interaction risk of brain seizures.

I think there are two issues here on medications. Dr. S thinks I can take two drugs together because they work differently - serotonin vs other chemicals. I can understand this. Two drugs that aren't the same can be taken at the same time because they work differently. But she is not looking at the drug interactions. I am surprised that the computerized medical records don't show the interactions. What really bothers me is she doesn't think the pharmacy doctors look at the big picture. She is the one that isn't looking at the whole picture.

I am not sure what I am going to do. I can go back to my therapist who referred her to me a few years ago and get a different doctor who is going to check the interactions not just how the drugs work. Or I can just call her and tell her I don't like the way Wellbutrin makes me feel. I am leaning toward voting with my feet and finding a new doctor.

Who should decide when are you too sick to work?

If you are sick, whether it is the garden variety flu or pregnant or coping with a medical emergency, who should decide when you are too sick to work:

A. The patient
B. The doctor
C. The employer
D. The employer's disability insurance company

Should it be A and then B sometimes? How about when the employer and their disability company start making these decisions? This is a neglected area of health care reform. Companies are cutting back on short term disability insurance - so instead of 70% of your salary, you might only receive 40%. This is understandable during a tough economic times.

But what if the insurance company decides you should go back to work and your doctor says you need to stay home still? And then they cut off your benefits and you are forced to sue? This whole thing appalled me.

I was stuck in a doctor's waiting room with out a book and forced to choose between 'Seventeen Magazine', some men's fashion magazine that I had never heard of, and Smart Money. They covered this topic in some detail in their March issue.

I was pretty darned appalled when I read that insurance companies where having their case managers call people on disability at home to ask how they were feeling, would they switch doctors, etc. I realize that any benefit is subject to abuse and that employers need to cut back on costs, but when the insurance companies start calling people at home to make sure they are still really sick? Oh, please. This has got to go.

If someone is sick and their doctor agrees, why is the employer and insurance company questioning this? If you had surgery that requires recovery time or if you have cancer treatment that is too debilitating to work, that is crazy. I do realize that there are people who go out of work on back injuries and then are caught carrying around 100 lb boxes of stuff. This is a bit different.

This is another part of health care reform that needs to be looked at in detail. The insurance companies should not be telling us when we are healthy and should be back at work.

Social networks and medical privacy

So you have a Facebook account, a Twitter account, a blog, and text and email everyone you know. You share things about your life, maybe not all, but probably more than you think. You complain about your life, tell everyone when you have a cold, a customer made you mad, your boss ticked you off, or your husband brought you flowers. You say happy birthday to your friends and commiserate over a job loss or death in the family.

But what if your doctor was on line as much as you and complained about patients or a work situation - which included you - as their patient.

This issue is now coming to the forefront for many people who use the internet both personally and professionally. The technical advice is to 'create separate personal and professional accounts' for everything. Well I have tried that and the lines are blurred. Everything is tied back to specific email addresses and what if you have an account in one place personally but need to use it professionally?

Hospitals are beginning to recognize this as an issue. I see it as a fairly significant issue myself. I expect my medical privacy to be preserved. I would not want my doctor discussing my medical issues on the open internet, nor would I want pictures of me posted by my doctor.

The free for all, no privacy, no rules of the wild west internet are in direct conflict with the guarded privacy found in medicine, banking, stock insider deals, and more areas. It will be interesting to see how this all unfolds in the coming years.

Putting cancer in its place

Recently, Sidney Harman, the 92 year old executive chairman of Newsweek, died of Acute Myeloid Leukemia or AML. Prior to his death he wrote a column on his cancer. He requested that it go stay in the corner as he was too busy to deal with it.

Many people let their cancer diagnosis dominate their lives while they are in treatment. Mr. Harman suggests this is wrong. He was too busy living to have time to let it get in the way of his life.

I think he has a good point. I was told a breast cancer diagnosis is a year out of your life and then you go back to 'normal' (whatever that is) and get on with your life. Many people drop everything in their lives and deal with their cancer and its treatment. Why do we do this? Is this the fight or flight mentality? If you have any other medical issue, do you put your life on hold? Is it because of the connotations of the word cancer that make us drop everything?

Cancer is not worthy of our fear, nor is it worthy of our life's focus. There is a lesson to be learned here, life is to valuable to have it neglected because of a diagnosis. Cancer should go sit in the corner. We need to focus on living and enjoying life.

Blogging my way through cancer or blogging my way through life?

I started blogging nearly 4 years and over 1400 posts ago with the express purpose of using my blog to keep friends and family updated on my 'oh-so-much fun' with cancer. Then I never stopped. Was I supposed to stop? I'm not sure.

Some people who start a blog to chronicle their 'oh-so-much-fun' with cancer stop blogging at some point. I think some of them move on in life and don't feel as inclined to keep blogging. Their posts start to get further and further apart. The last few are usually about going to a party or something else fun and exciting. Then nothing more. I assume they are physically and emotionally past their cancer and don't feel a need to blog.

Others change their blog's focus and maybe even start a new blog. Do I fit in here? Maybe. I mean I stopped writing (whining) about my cancer and now write (whine) about the rest of my health problems, new medical news, and my opinions on a variety of other topics - mostly medical.

There are people who stop blogging for another reason. Their last posts are usually written by someone else who references their obituary. This is the down side to blogging and life online coping with cancer, that there are many very sick people out there who end up on Plan B. These are the ones which are harder emotionally to follow on their last few months. You can see the downward trend, the attempts to find a new drug or treatment protocol to control their cancer for a few more weeks or months. They are horribly addictive - you keep checking their blog for updates looking for the hope they are seeking.

I have kept blogging through my medical ups and downs. Maybe if I didn't have any more medical ups and downs I would stop blogging but my body is not cooperating. I have more ailments than the average 90 year old. I am not currently being treated for cancer but am being followed by a medical oncologist every 4 months, a radiation oncologist every six months, a surgeon every year, and an endocrinologist every six months as the result of my cancers. That is six annual appointments alone. Then I also have a primary care doctor yearly, a back pain doctor every three months, an ankle surgeon every six months, and a knee surgeon for a second time in two weeks. That is eight more appointments. Add in some acupuncture, PT for a new ailment, and blood tests which are now monthly and you get the picture.

Some of these doctors I will stop seeing at some point - my ankle doctor I may see her again this summer if my ankle is not better - meaning surgery and a few more follow ups. I hope my knee gets better but I am not betting on it. I live the life that as soon as one thing gets better, another ailment shows up. And I also get the joys of PT for my knee is making my back hurt and the bursitis in my hip act up. I feel like I am as healthy as a horse on the way to the glue factory.

I do try to have a life outside of medical adventures but it can be difficult. I routinely end my day lying down with an ice pack and pain meds. But I'm still here and still blogging.

Remembering our roots

Here in the Boston area, this is an important weekend - and not due to the Boston Marathon. Long before the Marathon, this was Patriot's Day weekend - where our freedom was started. It was about our rights and freedom from taxation without representation and from foreign rule. 236 years ago tomorrow Paul Revere and William Dawes rode from Boston towards Concord to warn that the British soldiers were coming to take the ammunition and weapons in Concord. What started with this ride and on the Green in Lexington with the 'shot heard round the world' led to the founding of our freedoms.

Everyone should take a moment this weekend to remember how it all started on April 18, 1775.

Paul Revere's Ride
Henry Wadsworth Longfellow

Listen my children and you shall hear
Of the midnight ride of Paul Revere,
On the eighteenth of April, in Seventy-five;
Hardly a man is now alive
Who remembers that famous day and year.

He said to his friend, "If the British march
By land or sea from the town to-night,
Hang a lantern aloft in the belfry arch
Of the North Church tower as a signal light,--
One if by land, and two if by sea;
And I on the opposite shore will be,
Ready to ride and spread the alarm
Through every Middlesex village and farm,
For the country folk to be up and to arm."

Then he said "Good-night!" and with muffled oar
Silently rowed to the Charlestown shore,
Just as the moon rose over the bay,
Where swinging wide at her moorings lay
The Somerset, British man-of-war;
A phantom ship, with each mast and spar
Across the moon like a prison bar,
And a huge black hulk, that was magnified
By its own reflection in the tide.

Meanwhile, his friend through alley and street
Wanders and watches, with eager ears,
Till in the silence around him he hears
The muster of men at the barrack door,
The sound of arms, and the tramp of feet,
And the measured tread of the grenadiers,
Marching down to their boats on the shore.

Then he climbed the tower of the Old North Church,
By the wooden stairs, with stealthy tread,
To the belfry chamber overhead,
And startled the pigeons from their perch
On the sombre rafters, that round him made
Masses and moving shapes of shade,--
By the trembling ladder, steep and tall,
To the highest window in the wall,
Where he paused to listen and look down
A moment on the roofs of the town
And the moonlight flowing over all.

Beneath, in the churchyard, lay the dead,
In their night encampment on the hill,
Wrapped in silence so deep and still
That he could hear, like a sentinel's tread,
The watchful night-wind, as it went
Creeping along from tent to tent,
And seeming to whisper, "All is well!"
A moment only he feels the spell
Of the place and the hour, and the secret dread
Of the lonely belfry and the dead;
For suddenly all his thoughts are bent
On a shadowy something far away,
Where the river widens to meet the bay,--
A line of black that bends and floats
On the rising tide like a bridge of boats.

Meanwhile, impatient to mount and ride,
Booted and spurred, with a heavy stride
On the opposite shore walked Paul Revere.
Now he patted his horse's side,
Now he gazed at the landscape far and near,
Then, impetuous, stamped the earth,
And turned and tightened his saddle girth;
But mostly he watched with eager search
The belfry tower of the Old North Church,
As it rose above the graves on the hill,
Lonely and spectral and sombre and still.
And lo! as he looks, on the belfry's height
A glimmer, and then a gleam of light!
He springs to the saddle, the bridle he turns,
But lingers and gazes, till full on his sight
A second lamp in the belfry burns.

A hurry of hoofs in a village street,
A shape in the moonlight, a bulk in the dark,
And beneath, from the pebbles, in passing, a spark
Struck out by a steed flying fearless and fleet;
That was all! And yet, through the gloom and the light,
The fate of a nation was riding that night;
And the spark struck out by that steed, in his flight,
Kindled the land into flame with its heat.
He has left the village and mounted the steep,
And beneath him, tranquil and broad and deep,
Is the Mystic, meeting the ocean tides;
And under the alders that skirt its edge,
Now soft on the sand, now loud on the ledge,
Is heard the tramp of his steed as he rides.

It was twelve by the village clock
When he crossed the bridge into Medford town.
He heard the crowing of the cock,
And the barking of the farmer's dog,
And felt the damp of the river fog,
That rises after the sun goes down.

It was one by the village clock,
When he galloped into Lexington.
He saw the gilded weathercock
Swim in the moonlight as he passed,
And the meeting-house windows, black and bare,
Gaze at him with a spectral glare,
As if they already stood aghast
At the bloody work they would look upon.

It was two by the village clock,
When he came to the bridge in Concord town.
He heard the bleating of the flock,
And the twitter of birds among the trees,
And felt the breath of the morning breeze
Blowing over the meadow brown.
And one was safe and asleep in his bed
Who at the bridge would be first to fall,
Who that day would be lying dead,
Pierced by a British musket ball.

You know the rest. In the books you have read
How the British Regulars fired and fled,---
How the farmers gave them ball for ball,
From behind each fence and farmyard wall,
Chasing the redcoats down the lane,
Then crossing the fields to emerge again
Under the trees at the turn of the road,
And only pausing to fire and load.

So through the night rode Paul Revere;
And so through the night went his cry of alarm
To every Middlesex village and farm,---
A cry of defiance, and not of fear,
A voice in the darkness, a knock at the door,
And a word that shall echo for evermore!
For, borne on the night-wind of the Past,
Through all our history, to the last,
In the hour of darkness and peril and need,
The people will waken and listen to hear
The hurrying hoof-beats of that steed,
And the midnight message of Paul Revere.

More on the Estrogen Controversy/Confusion

All of us breast cancer people know about the estrogen controversy/confusion about if you have had estrogen positive breast cancer, should you avoid estrogen in the future? Based on yet another new study (of course, what would the world be without medical studies), the answer is sometimes its good and sometimes its bad.

I saw this article and thought - maybe I can finally figure this out - and it left me more confused than I was before.

I am keeping my stand of I am skipping estrogen because it allows me to avoid eating tofu which I hate. (Tofu and soy can mimic estrogen so supposedly it should be avoided by women with estrogen positive breast cancer - or so the last study said.) Anyhow this article only says that sometimes its good and sometimes its bad and since I have no way of knowing which is which, I am happy to be a confused, non-tofu eating breast cancer person for now.

The icky side of medical treatment

When we were young we would go to the doctor and get a shot and then a lollipop. That was the worst thing - the shot. (But then the 'politically correct' stepped in and said no to giving candy to children.) My dentist as a child used to give us little toys - animal shaped erasers.

As we got older and life started giving us more 'medical lemons' like cancer, we got all sorts of fun procedures, tests, medical adventures, and related ickiness. As a veteran of many of these fun little adventures, I have come up with a plan of cation for 'coping' with these medical visits.

1. Plan to be very mature at the appointed time and come armed with a list of questions - will it hurt, when do I get to go home, when do I get the results - and the list of medications, and a really good, long book. (The book is mandatory the less reading matter or other items to keep you occupied, the longer your waits will be. If you have a really good book you are interested in, you will have two minute waits and never have a chance to get into reading it. If you don't have a book, you are doomed to 3 hour waits staring at blank walls. Games on your smart phone are an acceptable option to a book but the point is there.)

2. Begin stressing up to a month before hand to ensure you are a complete zombie the day of the procedure. Look up the procedure on the internet and read up on all the possible side effects possible.

3. If possible before the procedure, take an Ativan or something equivalent to relieve the stress built up in #2 above.

4. Upon arrival at the appointment, prepare your inner three year old, lose your list of questions, turn over your list of medications, and start reading your book. My way of coping during the procedure is to keep my eyes closed at all times so I don't have to see what is going on. I don't want to see anything. (This also works for dental procedures.)

5. After the procedure, a little retail therapy can help why you mentally say 'that wasn't so bad, was it'. Because no matter how bad it really was, you just need to put it out of your mind and pretend it never happened and didn't hurt.

6. Begin preparing for the next adventure by going back to step 1.

Stress and Cancer and Families

Cancer is stressful. In fact, its considered that people after diagnosis are often suffering from Post Traumatic Stress Disorder. I can believe it. Cancer is more than stressful, its take your world and turn it upside down and shake out all the little problems in your life.

Any outstanding issues in your life come out to be dealt with - remember your former friend but then somehow your friendship ended but always meant to make up with, well now that you might DIE you have to deal with that. If you are going to DIE its time to write your will and make your final arrangements so that those left behind don't have be stressed themselves. And if you are going to DIE you need a bucket list and to rush around and take care of all the items. And what about a living will, hospice arrangements, etc - because if you are going to DIE you need to take care of them now.

Your spouse sits there and helps as much as they can. But they get stressed too if you are going to DIE, your spouse will be left behind and will have to deal with your will, your death, worry about all the things they never should have said to you, and I can go on.

My point is that at many levels the word 'cancer' means 'death'. The doctor says you have cancer and for a millisecond or longer, you think I'm going to DIE. Then rational minds kick in and say how can we fight this. And your spouse is along for the ride of your life. The patient often gets more attention from the doctors and caregivers because they are the sick one. The spouse gets some support but is stuck on the side lines of the highway to hell.

Catherine Zeta-Jones after coping with her husband's, Michael Douglas, stage IV cancer and treatment is just as stressed if not more than he is. She has just checked herself into a clinic for treatment of bipolar disorder as a result of the stress she went through. I am sure she wants to get her life back into some sort of stable form so she can proceed with her career.

The need for mental treatment after cancer treatment is not limited to the patients. Often the family members need some help as well.

But is it murder?

A divorced mom was recently convicted of attempted murder for withholding cancer medications from her son who had leukemia.

I know I don't have all the details but have the basics. The boy was diagnosed with leukemia in 2006 with a 95% chance for full recovery if treatments were followed. The boy was in primary custody of the mother. She did not give him his treatments because she thought they were making him sicker. The father sued for custody but it was too late and the boy died in 2009. The father has also since died in a motorcycle accident. This week the mother was convicted in court of attempted murder for withholding the medication and causing his death. She faces up to 47 years in jail.

It is one thing if you are adult and able to make decisions on your own and do your own research to educate yourself to choose. Its another thing if a couple are faced with a terminally ill child and can make a joint decision on what they want to do. There are others, many fundamental Christians, who do not accept modern medicine and that is because of a belief. But its another case if one parent withholds treatment for a curable illness because she doesn't understand it and its side effects.

In my opinion, she is guilty of attempted murder, child endangerment, and stupidity. If she didn't understand the medication and its side effects, she should have voiced her concerns to her son's doctors to learn more. She could have reached out for additional help. This is right up there with a diabetic who won't test their blood and continues to eat two doughnuts a day - a suicide mission but she did it to someone else.

I feel a doctor's treatment suggestions are a request to follow or not but it is my choice with a full understanding of the consequences. The doctor recommends PT for my knee and I am supposed to do the damn exercises ever day (I really do mean to but often forget because I am a spaceshot). I know this means my knee will hurt longer because I am lazy when all I really want is for my knee to stop hurting. But it is my decision.

As a mother she should have been looking out for her son's best interests, not succumbing to her fears. Her ex-husband realized this but it was too late. And the boy is dead with no chance for a long and healthy life.

What would your doctor do?

Apparently they would not do what they prescribe for their patients. A new study (of course a new damn study, there is always another study to refute any other study that was done) says that doctors are more likely to recommend a treatment path for themselves that has a higher death risk but lower risk of adverse effects - if you make it through it you are more likely to be closer to your current state, only healthier.

So your doctor says "I recommend treatment course A" but probably wouldn't recommend it for themselves. If you are confused and ask your doctor what would they do in this situation, they are trained not to answer that question but to present evidence to help the patient make the decision.

Maybe they better understand the issues and risks in the treatments and due to their training opt for something that is riskier overall but less likely to leave them deformed or impaired. As a patient we need to better educate ourselves so we can ask about treatment options, risks, adverse effects etc.

Our doctors are our advisers but they are not gods (as they sometimes like to think). You can feel free to disagree with them but be prepared to give good reasons why you don't want their recommended course of treatment. But unless you want to continually doctor 'hop' going from one to another, you need to be prepared to agree with their advice from time to time.

Just because (another stupid) study says doctors wouldn't follow their own advice, they do have the benefit of years of training and experience. If they can tell you why treatment A is better for you than treatment B that they would want for themselves, they may be right. Every one is different. Every cancer is different and warrants a different treatment course.

We need to educate ourselves and be informed patients so as to pick the treatment course with which we are most comfortable. Until another (stupid) study comes along and tells us different.

That word 'cancer'

Cancer, the big C, your horoscope, whatever. The word has a lot of impact.

When you are the patient and the doctor tells you that you have cancer, it kind of throws you for a loop - to say the least. It actually turns your world upside down until you slowly turn it back right side up - which can take months, years, decades, or never.

When you are not the patient and you think you might have cancer, it is this looming horrible death surrounded by bald people on IV's, skeletally walking around or huddled in a wheelchair.

When you are not the patient and you hear that someone else has cancer, many people do not react well because of their associations or fears of it. Some people do handle it and actually treat you as a normal human being.

But wherever you are on the list, the word cancer has emotional impact behind it. It doesn't matter what stage of cancer that is discussed, its intimidating (I'm not using the word 'scary' because we can't fear it - its not worthy of our fear) and life changing because there is no cure. Some cancers are called 'good' cancers. There is no good cancer. Even if your cancer was years ago, there is always the nagging 'what if'. Until there is a cure, this will not change.

I am confused about risk reduction

Here's another article about increasing cancer risk and another here. And that's before breakfast. I bet I could find hundreds of articles this morning about how to increase or decrease cancer risk. Call me confused. Or then let's even think about other ailments - alzheimers, MS, ALS, heart attack, stroke, etc.

The life time cancer risk for a man is 1 out of 2 and for a woman 1 out of 3. So if you reduce your risk on one side with good behaviors and then increase your risk with bad behaviors, is there anything you can do to really change your risk? And we all know we are all going to die some day (not to be morbid but that's a fact). So we aren't really reducing our risk, we are just attempting to live longer

I think I have given up on this risk reduction idea. Because they keep changing the rules. I eat my vegetables. I get exercise. I get plenty of sleep. Don't use salt. Blah, blah, blah. But I still feel like my body is just falling apart. I think I have more ailments than the average 80 year old.

So what is this risk business? I do the right things and fall apart. I work with someone who smokes, lives on Pepsi, goldfish crackers for breakfast, with candy and junk food mixed in. She is healthier than me and 10 years older. I work with a bunch of sixty year olds who are healthier than me.

So maybe I'll eat bacon for breakfast and forget about risk today. But I will go for a walk later.

When doctors don't listen

About a month ago, I complained about Dr B who blamed me for my high blood pressure. He has been collecting cases of high blood pressure for his entire career, only found 11, and blamed me for my high blood pressure. The only test he did was to take my blood pressure. I am not sure he even read my chart.

I found out a few days later that my thyroid levels were messed up and could contribute to high blood pressure as well. Hypothyroidism can cause the bottom blood pressure number to go up. Hyperthyroidism can cause the top blood pressure number to go up. Then my next blood tests showed my thyroid levels in the normal range. So that theory was put to rest. But I did gloat a tiny bit.

Well, I have found out all sorts of things in the past few days about how badly he listened.

First I found out that he filed two reports in my medical record - one was for another patient who had come to see him about a rash. So when he typed up his notes in the electronic medical system he couldn't even get that part right.

Then I went to the follow up appointment he arranged for me with a blood pressure specialist yesterday. I learned a few things in addition:

- My thyroid levels are up and down and up and down and require monitoring and be stabilized. A longer term project but can definitely affect my blood pressure as I noted above.
- Two of my medications should not be taken together and can affect my blood pressure as well. One is a back pain medication that is working very well. The other is an antidepressant that my doctor had consulted some one else about before putting me back on it with my back pain medication.

So the plan is to meet with my psychologist this week and straighten out my anti depressant. I don't care what she says that in her opinion they can be taken together. I don't want to take something that could have a major interaction with my back pain medication.

Next I will continue my monthly blood tests to get my thyroid levels straightened out. I see my endocrinologist in July and if the monthly tests are continued by then we'll have more data.

In the meantime, I am gloating about Dr. B with the ego who blamed me and missed the opportunity to 'collect' another patient with a secondary cause of high blood pressure. Maybe that's why he doesn't have very many.

Living in the "Its not a headache its a brain tumor" years

Once you are diagnosed with cancer, the doctors usually do a few other tests to make sure there are signs of cancer anywhere else. Then, if you are like most cancer patient, you research the crap out of your diagnosis and start finding out about metastases and recurrences.

Then you get paranoid and decide you are going to die. Cancer is going to get you. You are doomed! Eventually you start to calm down and decide it was all in your head. But its very easy to start going down that road again - especially if your oncologist says you need a few more tests or something.

With most cancers recurrences head for major organs such as liver and lungs and even your brain. If you get brain metastases, the outlook is usually not very good. It is the one that is feared the most I think. But also every little ache and pain makes you think is that a cancer symptom? Over reactions to every little ache or pain are very common. Its not a head ache its a brain tumor. Its not a stomach ache, its stomach cancer. Every pain becomes a cancer symptom. That paranoia again.

But sometimes a head ache can be a brain tumor. This article talks about finding a brain tumor and their symptoms. I personally know someone who is a brain tumor survivor for over 20 years so I can rationally say it can be beaten. But that little paranoid side of me always cringes at the first sign of a headache.

How did you pick your surgeon?

There are lots of ways to find a surgeon - you go with the one your doctor recommends you, you ask a million friends for referrals, you research them in the state medical society to make sure they haven't been charged with malpractice, etc. But how do you know how good they really are at the surgery you need?

Apparently there isn't a good way to find out how good an individual surgeon is for your type of procedure. There is no magic registry where the surgeons report "I did six of those last week and three of these. Two of them had complications and needed longer hospital stays." Nor is there a listing that says of the number of procedures this doctor did and what was the outcome one, three, and six months later.

So what can you do, not a hell of a lot. You can cross your fingers - always useful. Or flip a coin. Look up your hospital with the American College of Surgeons listings and see how your hospital did. But you don't know about the individual surgeon.

Or if you are lucky enough to need surgery on the same part of your body multiple times, you can use the same surgeon over and over again.

So its just another crap shoot in the pursuit of medical treatment. Good luck!

Did Cancer Make Me Sick?

I have always had more medical ups and downs since my first cancer diagnosis at age 19. In my 20's I had a benign lumpectomy and a burst ovarian cyst. In my 30's, I had another burst ovarian cyst and knee surgery after a bad day of skiing.

In my 40's, I have had fibroids that died off and created a massive internal infection which resulted in a hysterectomy, a second cancer diagnosis, another benign lumpectomy, my gall bladder removed, degenerating disks in my spine, sprained ankle, possible high blood pressure, another knee injury (on my formerly good knee), and tennis elbow.

I also have a few pesky after effects of cancer including lymphedema, early menopause as a result of chemo killing off my remaining ovary, and shoulder issues from breast cancer surgery. Also, a lifetime on synthetic thyroid hormone to compensate for the removal of my thyroid at 19.

So am I more prone to other health issues now that I have had cancer twice? I was talking to my therapist yesterday about how one issue is never very isolated in the human body and everything is really interconnected in unexpected ways.

Take the example of a sprained ankle - so you limp, which puts strain on your back because you walk funny and maybe puts extra weight on your other leg which might aggravate some previously minor issue. Or one medication can cause side effects which leads you to take something else to handle them.

If I look at my health - would I have been healthier if I hadn't had cancer? Or would I have had all the other issues? I have never really been an adult with out cancer so I can only conjecture as to what my adulthood would have been like.

I am not trying to regret the past or rue what has happened but am merely curious as to what I would have been without cancer. The one thing I do know is that cancer gave me lots of doctor appointments.

More on health care costs for public employees

Here in Massachusetts there is a state law which says municipalities must negotiate with unions whenever they want to make changes to the current health care plans and payments. So what has happened is towns are spending more and more each year of their budgets on health care for employees.

A report was done by two organizations here that reviewed the costs in 14 towns. If you are a public employee in those towns, you pay an average of $11 co pay for primary care, $14 for specialists, generic drugs cost you $8, brand drugs cost $15, non-preferred brands cost $31. You also have no copayment for imaging and no deductible. Are your costs anywhere near that? And probably up to 85% of your premiums are paid by your employer.

The report recommends that the state law be changed. The governor is backing the change. The unions are not happy. They claim their members have made concessions in wages for years. The problem is the equation has changed and change can not be avoided.

I am not saying the unions shouldn't have some say but they need to realize that something has to give. Either cut jobs or change health care payments. Do we want fewer teachers, fire men, police officers, public safety employees, roads paved, etc? I hear it here - the fire department and police departments face job cuts but the unions won't negotiate on health care.

The public complains why aren't there trash cans in the public parks - because the town no longer has the manpower to empty them. Or why is there an increase in graffiti? Because the officer in charge of following up on graffiti had his job cut. And no one wants to pay more taxes.

The situation in Wisconsin recently received national and international attention over union busting. I think it was a poorly handled overly hyped situation. But it did draw attention to the fact that change is needed.

Calorie Counts

There are two kinds of people out there - those who read the calorie counts and those who don't. The government is stepping in and trying to convert those who don't into those who do by putting calorie counts everywhere. I am not sure I consider it a good use of government funds but it is an effort to make Americans healthier and thinner thus making less strain on medical costs but that is not the point here.

I guess the problem is that the people who don't read the calorie counts are the ones who need to so some people say why bother. But the problem with calorie counts is the people who don't understand them, don't care. If 800 calories for a cheeseburger doesn't sound like a lot to someone, its irrelevant. And if someone orders a salad but then puts gobs of salad dressing all over it, it defeats the purpose of ordering the healthy item.

I read calorie counts and am constantly appalled by how many calories are in things at restaurants. In many chain restaurants you can order a salad which is over 1000 calories because they added some toasted nuts, tortilla chips, or high calorie dressing. So my healthy intentions are ruined. I also read calorie counts in grocery stories. Who knew that not all ground turkey is the same - you need to read the fat grams too - and get the extra lean package.

I am a calorie reader for life and wouldn't mind seeing the calorie counts in restaurants.

About all those studies

Please don't tell me I am the only one who finds the nonstop barrage of studies telling me to use olive oil its a good fat, or coffee will affect chronic pain, or this new wonder drug will save us all, or what they told us last week, last month, last year is now wrong is just plain confusing? I can't be alone here.

So then I found this lovely article telling me "Almost Everything You Hear About Medicine Is Wrong". I learned that there are people out there who make their career out of proving these studies wrong.

Its not that anyone has the intention, usually, of misleading us but most of the time, they meant well but something else was missing. Maybe more time was needed, maybe there was a statistical anomaly (big words for early in the day) or something else. I mean Thalidomide was meant to prevent morning sickness but ended up causing all kinds of birth defects and then some cancers too. Who knew what would happen 30 years later? I mean is a clinical trial supposed to last 50 years to see what happens to subsequent generations?

Or if you are doing research you are looking for results, changes, anomalies, or other differences, so you follow them down the road they lead you and assume you are getting to the correct hypothesis.

Well, now that I am happy to know that I am part of the confused general public, I will go have some breakfast starting with some fruit, because its better than juice, but does contain a lot of sugar so is it good or bad? I don't know. Maybe I'll just go have bacon because we know that while it tastes really good it is doesn't have much nutrition other than yummy fat grams.

When business interests come first Part 2

A few weeks ago, I blogged about drug over pricing. A drug company had gotten FDA approval for a medication previously sold by compounding pharmacies for $10 per dose. They were going to sell this medication at $1500 per dose. This was a drug for preventing premature births.

Well guess what - the drug company is responding to critics and has reduced the price from $1500 per dose to $690 per dose. Still a hefty price but its nice to see a significant price reduction.

But then the business question comes in - what was their profit margin on the drug where they had such a cushion that they could reduce the cost by so much. This is clearly too much for me so early in the day but even without doing the math they were making a lot of money off this drug.

The real point of this is in the closing lines of the article: "Stay tuned: this battle is far from over and, hopefully, it will bring greater attention to the overall issue of drug pricing."

The Overly Hyped News

We all hear the news - the endless hype on Charlie Sheen, Lindsay Lohan, Libya, Japan, and everything else. The media puts out an endless stream of updates from live camera shots, press releases and conferences, and announcements from PR agencies. We get so much "non-news" and there is such an effort to fill the hundreds or thousands of television channels and radio stations with more news, that sometimes news sneaks out before its ready.

Companies offer endless streams of announcements and press releases. And sometimes they talk about what a product is supposed to do before they know it will work. This raises expectations on the part of the reader who doesn't always hear that it is expected to work but that it will work.

The pharmaceutical industry is not immune to this. Amgen and Takeda Pharmaceuticals just announced that a highly anticipated lung cancer drug did not meet expectations. I bet it was only so highly anticipated because they promoted it. A classic example of overly hyped news.

So if you had lung cancer and heard about this new drug that looked very promising and then found out that it didn't work as expected. How would you feel? Like one of your last hopes just collapsed? Maybe the marketing for the new drug that was supposed to help boost sales let the cat out of the bag a bit too early.