Weekend update

I went a way for the weekend and had a great time. I drove 160 miles in a pouring rain but saw some foliage as I was in Northern New Hampshire. It tired me out. I stayed up too late with my friends but was the first one to bed both nights - midnight on Friday and 10 last night.

Being the first one to bed means I missed the excitement of the missing person who was lying on the floor in the corner (and later realized they had misplaced their clothes as well). Its not what you think it was and alcohol might have been involved.

This morning we saw moose tracks and a deer trail - both in the backyard.

I also stood too much and made my back hurt which is why I am lying on ice right now. With a warm cat on my feet.

It was a nice weekend away but now its back to reality... but not until tomorrow morning.

Its Friday

In fact it is the last Friday in September before the deluge of pinkification. And there are only 39 days until the elections.

The sporting world is overjoyed that NFL refs are back on the job. They received a standing ovation last night. I am sure that will last one day.

The sporting world is also saddened that the NHL has cancelled all their preseason games. The bars outside the NHL arenas are probably very sad as their business will be way off during that time.

The Boston sporting world is saddened that the Red Sox have ended the season with the worst record in decades. Would anyone like to place a bet if Bobby Valentine will have a job next season?

(What? Am I supposed to write about cancer and health all the time? There is more to me than just medical ailments.)

This weekend I am going away for a girls weekend (and my husband will be helped by the cat in guarding the house while I am gone). I will leave after I get the stitches out from my skin biopsy - which I am sure will be nothing. (See I snuck in a little medical stuff.)

I am looking forward to a weekend of 'Girls Rule - no pets, no children, no husbands, no rules'. We have hula hoops and are having a pizza themed weekend. I am making a carb free one with an egg plant crust. We may go antiquing. We will definitely eat too much.

During the next two weeks I am very busy - basically over committed through mid October. But what else is new?

After this afternoon's doctor appt, I don't believe I have another appointment for three weeks? What will I do with my time?

But life goes on. Its Friday and I will enjoy the weekend.

They must have a really big crystal ball

The title of an article published by the BBC screams "Cancer Death Rates Set for a Dramatic Fall" by 2030. Yup. I believe it. Not until I see it. Thats 18 years from now. There are still some cancers increasing in incidence. People are still dying from cancer. Cancer rates are increasing in third world countries as well.

They state that there will be a 17% drop in the death rate due to advances in treatment and decreases in smoking rates. They predict that the death rates will drop from 170/100,000 deaths to 142/100,000 deaths. Here is the little chart showing their data in a very simplified form.

 

Let's put some numbers to this to see how it looks on this side of the pond.

	US 2012 Predicted Deaths	%+/-	estimated 2030 death rate
All cancers	577,190	-17%	479,067
Breast cancer	39,920	-28%	28,742
Bowel/Colon	51,690	-23%	39,801
Kidney	13,570	-17%	11,263
Oral	7,850	+22%	9,577
Liver	20,550	+39%	28,565
Lung	160,340	-8%	14,7513
Ovary	15,550	-42%	9,019
Pancreas	37,390	-3%	36,268
Prostate	28,170	-16%	23,664

So if my numbers are correct (I was not the stellar math student and claim chemo brain so there is so margin for error) while it is exciting that there is an expected 42% drop in ovarian cancer death rates, that really only 6000. This would be 100,000 fewer deaths in the US in 18 years. Or a drop of 5555 less each year. At that rate it will take 86 more years to end cancer deaths in the US. That is too long as far as I am concerned. Most of us can expect to be here in 2030 but probably very very few will be here in 2116.

The medical roller coaster goes round and round

Yesterday I went to see a new doctor, Dr. P., to see if I have rheumatoid arthritis due to all my aches and pains that never seem to go away. I have a family history of RA from my mother and maternal grandfather. I was referred there by my pain management doctor, Dr. G.

When I got there Dr P said that Dr G had put in his notes that I had myofascial pain/fibromyalgia. I said he had never mentioned fibromyalgia to me at all. At first Dr P said she would clarify that with Dr G and that it would be treated through the pain management department as I already am. By the end of the appointment Dr P said that I probably do have fibromyalgia because I have all the signs after she pushed on all sorts of places that caused pain.

Dr P was also concerned that, because of my family history and symptoms, I could have other ailments. A family history of RA does not mean I will get RA but that I am probably more prone to getting other autoimmune ailments. Dr P also said that because of my history and symptoms this wasn't going to be a one time visit but that I would get all sorts of fun tests. So I left a urine sample, went for blood word, and hand, wrist and ankle x-rays. If everything comes back negative, she will follow up with me in six months. If anything comes back positive, I will see her in three weeks for more fun and games.

On the plus side, its not cancer. On the negative side, these things don't ever really go away. But I really am a healthy person - if I keep saying this, maybe it will come true.

Things that go bump in the night

Last night something went bump in the night. I was awake for an hour or two or three starting about 1 am (what a surprise, this hasn't happened since yesterday) and I couldn't get back to sleep because my back hurt. Something 'cackled' and went wham on the corner of the house right next to the bedroom window. Then I heard more 'cackling' down on the patio and silence.

The cat and my husband didn't move a muscle. I think it was a bird or large bat (biggish thud) with a poor sense of radar and/or vision. Yes it was the middle of the night but the house is light green so you think it would stand out to flying things. It was probably only a foot or two from the corner of the house... (Why am I thinking of 'George of the Jungle' who couldn't swing from tree to tree, but went into the tree instead?)

This is me in avoidance mode this morning. I have a doctor appointment today I am not ready to discuss. So I will worry about things that go bump in the night instead. And hope there isn't a little suprise waiting outside on the patio for me...

Breakthrough research but...

Its all over the news this morning that a new study was published in Nature Magazine yesterday. You can read it here in its full technical jargon. You can also read about it here in its 'translated for normal people' version. It does represent some great research where they have broken down breast cancer into four types:

• Triple negative seems to be a basal type which makes it more related to ovarian cancer so this is saying should it be treated like ovarian cancer? An interesting thought for a very aggressive and difficult to treat disease.
• The most common type of breast cancer ER+/PR+/Her2- is divided into two groups based on the luminal status (whatever they are). One group does well with chemotherapy, one does not, but both do well with hormonal therapy (Tamoxifen/Femara etc). So this means some women would no longer get chemo as in the past.
• The last group is the Her2+ group which has recently been treated with Herceptin that has turned one of the worst cancers in to one of the easier to treat.

This is all wonderful and good but it was based on a study of the tumors in 825 women... which is a really small number. And as the article in the New York Times on this cautions:

"For now, despite the tantalizing possibilities, patients will have to wait for clinical trials to see whether drugs that block the genetic aberrations can stop the cancers. And it could be a vast undertaking to get all the drug testing done. Because there are so many different ways a breast cancer cell can go awry, there may have to be dozens of drug studies, each focusing on a different genetic change."

So as always, more studies (and patient patients) are needed.

End of life medication

In Electionovember (this is not a political post), Massachusetts residents will have the opportunity to vote on End of Life Medication. There are several requirements to the law:

• Must be an MA resident
• Must have been given less than six months to life
• Must be capable of making and communicating medical decisions
• Must voluntarily make a wish to die and make an informed decision.

I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.

The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.

What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.

A 'code of silence'

Is there a medical code if silence? Apparently not as much now as there was in the past but it still exists. Dr Marty Makary wrote a book called 'Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care'. At first he was told he would be hated for the book but now his colleagues praise him.

He describes three key problem areas:

• Dangerous doctors
• Out of date doctors - who don't keep up to date
• Profit hungry doctors and hospitals who aim for the bottom line instead of a healthy patient.

Here are two additional statistics:

• One in four hospitalized patients are harmed by medical by a medical error
• 20-30% of medical care is unnecessary.

This all makes you stop and think. Let's look at each one individually.

Dangerous doctors are scary. They probably cause a good portion of the medical errors as well. These are the doctors who operate on the wrong body part or order wrong medications. They are really scary. And there is a code of silence reinforced by malpractice fears,

Out of date doctors who do not keep up to date on new treatment protocols and procedures. This is akin to learning from a history teacher who stopped learning in 1960 - and missed the whole Cold War, Vietnam, and a million other changes. They know they old stuff but not the advances since. What they have missed could kill you.

Any hospital and doctor who is not there for the patient and focuses on the bottom line should be avoided. There are for profit hospitals out there and you will never catch me in one. I know a couple around here and they aren't for me. And I don't recall them being on the top of any patient care list either.

The last statistic is the scariest and it cannot be blamed completely on the doctors. Yes there are doctors who are using the CYA approach to order more tests or procedures (see malpractice above). But there are also patients and their families demand procedures and surgeries to 'solve' their problems. 

How can we help solve these problems:

• Select your doctors carefully. Ask for referrals and do research. Don't stay with them if you don't like them and how they treat you. They don't need to be your best friend but you have to believe in them and feel comfortable with how they treat you.
• Educate yourself. Become the most educated patient you can. Research your ailments, ask questions, be assertive (in a very nice way).

We also need to call for transparency in our care. Why are procedures or medications ordered? If hospitalized, how many nurses are there to care for you? Who is in charge of your care while an inpatient? Speak up!

We are responsible for our care. We need to speak up and help break any code of silence.

Goal Setting

While I admire goal setting and see it as a great strategy for getting things done. Goals need to be attainable. If you overestimate what can be accomplished, you set yourself up for failure. This means letting down yourself as well as everyone else who was relying on you.

If you set a goal of "I will lose 20 lbs before bathing suit season". Well that's good. But are you trying to do it in 2 weeks or in 3 months. The 3 month time frame is much more realistic as healthy weight loss is around 2-3 lbs/week. Attainable is 3 months, unattainable is 2 weeks - and if you don't lose it, will you be depressed and eat more?

The National Breast Cancer Coalition, or BreastCancer2020.org, was formed in 1991 and in 2010 added the aim of ending breast cancer by 2020. If you read their website now it looks like they are going after politicians.

From their blueprint:

"What does the end of breast cancer by 2020 mean? By January 1, 2020, we must understand how to prevent people from getting breast cancer in the first place and how to prevent them from dying from the disease.

NBCC will have a strategic plan in place to achieve its mission, will have implemented much of it, and will have obtained support and partnership from leadership among all key stakeholder groups."

If you read their 2012 progress report, which they say progress has been made but you need to read this report with their 2011 report. To me, it looks like a lot of spin. They are 20% through their deadline but I didn't see 20% progress.

Now MD Anderson in Texas has announced they are launching a new $3 billion war on cancer where they have assembled a team of specialist with two goals. They want to reduce the number of deaths from a group of cancers by 2020.

"...Dr. Ronald DePinho, president of the large cancer treatment and research center, is launching this project in two parallel tracks: "One is to apply the existing knowledge, to make a near-term impact in this decade," he said.

"The second is to also say, 'We do not know everything we need to know to ultimately cure the disease.'"

The cancer center calls the program "an unprecedented effort to dramatically accelerate the pace of converting scientific discoveries into clinical advances that reduce cancer deaths."

"The Moon Shots Program signals our confidence that the path to curing cancer is in clearer sight than at any other time in history," DePinho says.

Doctors at MD Anderson believe that dying from cancer can eventually be as rare as dying from pneumonia. And DePinho believes this can happen sooner rather later for patients suffering from the following five types of cancer:

• lung cancer
• melanoma
• triple negative breast cancer and ovarian cancer (which are very similar on the molecular level)
• prostate cancer
• acute myeloid leukemia/myelodysplastic syndrome & chronic lymphocytic leukemia (blood cancers)"

Is this goal a little more attainable? I don't know.  I admire both sets of goals. But what if they don't attain them? 2020 is 7 years and just about 100 days away. Can they do it? How many of us will be let down and discouraged if they don't?

Those who are living with cancer hold on for the dream of the cure for cancer. It has been talked about for decades and centuries and by putting these very short deadlines on it, will it make a difference?

Flab, honesty, and health care costs

First they tell us we can bet fat and fit at the same time. Then they (this is the evil them who secretly rule the world) tell us that as our bodies widen, our health care costs will spiral out of control. Make up your mind will you! I know its an evil conspiracy if they can't kill us, they can confuse us.

I am fat, I admit that. Well I am fatter than I wish I was but my BMI has not hit that evil O level. But I also go to the gym three times a week for 40 minutes of cardio followed by working with weights and other tortures.

I don't think my flabbiness has contributed to additional health ailments - I mean I have enough already. I know being overweight can contribute to all sorts of problems. And as obesity rises in the US, they project  health care costs will bulge to cover them. I can understand that but I question the math behind it.

How did they get the weights of people? They called them and asked them. If someone called you and asked you on the phone your height and weight. Would you tell them the truth? Oh, please.

"The CDC data indicate that the South is the most obese region of the U.S., but that may not be entirely true either, said George Howard, professor of biostatistics at the University of Alabama at Birmingham. No one was weighed or measured in the collecting of the information; people were merely asked about their heights and weights via telephone -- so they could have lied.

Howard speculates that there may be bias in the data because "there's not a social stigma attached to being fat in the South," he said. "If you ask people how fat they are, they tell you."

Correlations between obesity and the South may be tied to other factors, Allison said. Certain ethnic groups, people from rural areas, and people of low socioeconomic status are more likely to be obese than others."

So maybe our obesity rates are tied to our honesty rates as well as our waistlines. Not that we are a nation of liars but have you ever deducted a few pounds or a few years if asked? Why don't we have a real survey where people are weighed and measured.

Tis the season

No not the December holidays. The other season - Pinktober followed by Electionovember. I can't wait. Actually I can wait. Maybe I'll leave the country for a few months. I wish. Then I would have to reschedule a whole bunch of doctor appointments.

So during Pinktober, I pledge:

• I will not purchase anything pink
• I will not donate to anything pink
• I will not raise any awareness for breast cancer

Pinkotober and pinkification has actually turned me off from the whole cause. It has become a money making  bonanza preying on the emotions of the public. There are so many products that are pinked that actually send only pennies for each item purchased to any kind of cause.

A product may sell for $20 and a portion of the manufacturer's profits go to breast cancer research. So the whole sale price is $10. The manufacturing costs are $7 which leaves $3 in profit and if 10% is donated, that is $0.30. You are better off sending the $20 directly to an established non profit.

And never mind pink lights on building, pink sports teams, pink garbage cans, pink fried chicken buckets, pink hats, and more.

As far as Electionovember, I pledge:

• I will vote on election day
• I will not dominate conversations with political rants
• I will not allow myself to be subject to anyone else's political rants
• I will make up my own mind on my votes

I am so sick of the political ads and bashing, mudslinging, and polarizing that makes up politics these days. They don't talk about their issues, they talk about how the others are wrong and lie about each other.

I think all politicians should be required to talk about their stance on issues and not be allowed to bash the other one. I mean they should be free to say things like 'my opponent disagrees with my position but I believe it is correct because...' but they should not be allowed to say things like 'my opponent is a liar and will contribute to the end of the world because they are wrong about everything'.

What if politicians had to take lie detector tests? Would that help?

In the meantime, feel free to join me in an unpinked and politic-free season.

How would you answer the question?

Someone asked about this on one of the many cancer boards I am on recently, post cancer how do you answer the question: "Do you have any significant health issues?" Let us pretend this is not a doctor's office where we would launch into a twenty minute spiel that includes multiple surgeries, treatment protocols, on going side effects, latest tests and their results, current prognosis, medical facilities used, and current medication list. If someone really needs to know my medical history I need a sheet or two of lined paper, not two scrawny little lines to write in tiny print.

But what if you wanted to go bungee jumping, sky diving, or something which required a medical release? Do you say 'I had cancer and am mostly fine except for a touch of lymphedema'? (Note: my back would preclude me from any of these activities myself.) Or do you say nothing because you are no longer in treatment?

My personal feeling is that if my medical history is going to make a difference I might tell them about the majority of my medical adventures. Is it important for anyone to know I had my gall bladder out four years ago?  Only to my doctor or a surgeon looking to cut into other parts of me.

I will never use the word 'survivor' to describe myself except in the context of  'surviving millions of medical adventures'.  But I could be persuaded to write 'I had cancer twice'. Then I get weird looks and lots of questions and people tend to tell me their medical history. And then we get to have a big discussion about health ailments.

So I guess I would be more inclined to keep my mouth shut about my medical history.

Thyroid Cancer Awareness Month

September is Thyroid Cancer Awareness month. Its probably awareness month for several other cancers, ailments and conditions. Like all months it also probably has an official birthstone, flower and more. I will focus on thyroid cancer awareness.

What we should all know about thyroid cancer.

• It used to be a relatively rare cancer. It has doubled in incidence since the 1990s and is the fastest growing cancer in the US.
• This year the American Cancer Society expects 56,460 cases in the US, this is more than the number of cases of ovarian, leukemia, myeloma, brain, uterine, bone, larynx, gall bladder, rectal, esophageal, stomach, or oral cavity cancers.
• If caught early, it has a relatively high rate of 'cure' but the patient is left with a lifelong chronic condition of having no thyroid.
• Treatment for thyroid cancer is very different from other cancers in its treatment. And it can recur decades later.

Some of the increased rates are attributed to advances in technology allowing smaller and smaller tumors to be detected. But environmental factors clearly contribute to the increases.

Check your neck is the message here.

Cancer killer article

I love these articles which tell us the things to do/eat/drink/avoid to cure cancer. They usually appear on some what dubious websites, full of ads for other 'cures' which make me think of snake oil salesmen. But here's one that tell us the 'Top Ten Natural Cancer Killers'.

Its on prostate.net which is a website for 'healthy living for men'. It requests '© All Prostate.net Content is Copyrighted | Please Link to Us but Don't Copy From Us'.  This little statement is a big red flag in website credibility.

But I digress, here are the top ten natural cancer killers from their website:

1. Beans
2. Broccoli and other vegetables
3. Carrots
4. Red peppers and Capsaicin
5. Garlic
6. Mushrooms
7. Raspberries
8. Resveratrol (found in red wine and grapes)
9. Tomatoes
10. Turmeric

You can read their article on what the benefits of all these are but here is a dinner menu which you could make at home and eat once a week and get all the benefits:

Appetizer

Broccoli and carrot salad - shred or finely chop - add some finely chopped red onion, and fresh parsley, and toss with oil and vinegar or lemon juice.

Entree

Vegetarian stew with beans, carrots, mushrooms, tomatoes, garlic, finely chopped hot red pepper, and onions. Saute onions and garlic. Add beans, mushrooms, tomatoes, some water or vegetable broth. Season with turmeric, Garam Masala, and Vindaloo seasoning (substitute curry powder if none available). Bring to boil and let simmer for 20 minutes. Add salt and pepper to taste. Serve over brown rice or with Naan bread.

Dessert

Raspberries and grapes by themselves or over vanilla ice cream. Or puree raspberries and serve over ice cream with grapes on the side.

Beverage

Nice red wine to counteract the heat of the stew.

This is how I cook. I look at what I have and wait for an inspiration. We will not have this for dinner as we are having cheese burgers. We will have it later in the week. I may think the website is dubious and am not sure these will kill off cancer - I would want a little verification before I did believe it. But it would make a relatively easy and healthy meal. A home cooked meal always beats restaurant food.

Stress and Depression impact cancer survivor

Thank you to this latest study (because we needed another study) illustrating how I am doomed. I have two cancer diagnoses  under my belt. So I am a tad stressed at times. Wouldn't you be? I mean cancer? Twice? Thats a bit stressful. And its kind of depressing as well.

"A disease like cancer can be a mortal battle, often fraught with overwhelming stress. Given that stress management can be difficult even under ordinary circumstances, elevated feelings of anxiety and depression in cancer patients are certainly understandable.

Yet, several recent studies underscore how critically important it is for those fighting illness to learn how to combat stress. A team of researchers led by Lorenzo Cohen, professor of general oncology and director of the Integrative Medicine Program at The University of Texas MD Anderson Cancer Center, found that symptoms of depression among a group of patients with late-stage renal cell carcinoma were associated with an increased risk of death."

This was published in August in PLOS ONE, a scientific journal full of big words which you can read here.

Thank you. I am more stressed because you say my stress and depression will kill me. I don't have renal cancer (yet) but I am sure they will do more studies and tell us how it will affect other cancers. You made my day.

Aging

I often look around and see people my age and think 'they look old'. I mean if I run into someone I went to high school with and they have gray hair and wrinkles, I think they look old. I hope I don't look that old, ever.

Yesterday at work, they had a monthly sales meeting where they get a birthday cake to acknowledge the birthdays of all employees that month. It is actually a good system. My birthday and one other person's were celebrated. Then people started asking me how old I was. Most of them are all older than me and I have worked with them for a few years now so I don't really have a problem with this. But apparently they have a problem, because I am between 5 and 10 years older than they thought. So then I looked at my Real Age test results which says I am 3.7 years younger than my actual age. I combined the two and now I am 37 if you need to know.  Next year I will be 37 again.

I am 37 with the medical records of an octogenarian.

Somewhere out there...

Over the rainbow, far far away. There are all sorts of politics, elections, unrest in the Middle East and more. I don't care. I learned at the last presidential election that I had to go into avoidance mode to keep politics out of my life.

I do understand politics are important and I vote. But frankly I am not interested in negative ads where the candidates slam each other but never say what they are going to do. Or the candidates who fall from grace because they were set up by an opponent as a drug dealer. Or the former candidate in MA who said he has an addiction for $500/hour hookers but not for sex - only dinner and a movie. (Thats a lie if I've ever heard one.)

At this point in my life, I have plenty going on and will never run for politics. Maybe I'm selfish but I'm happy in my own little world with with work, my cat, my husband, our little house with its garden. I don't need to deal with the rest of that crap. I don't have enough time or energy to do much more these days. I do have a social life.

But I also visit doctors regularly. One appointment this week, another in ten days. Then a bunch in October and a couple in November. Then presto! we are done with the big elections for another four years. And I won't have to worry that I might be missing anything on the elections, politics, and all that...

More on what not to say to sick people

I can't blog about this topic enough. There are so many people who unintentionally say the wrong thing to sick people. So here we go again.

Things not to say:

"You look so good!" - Um yeah. I might need to throw up pretty soon so excuse me while I rush to the bathroom. I can fix my hair and make up when I'm done.
"You need to just stop thinking about it and get busy." - Well if you can figure out a way to stop my brain from sending me down that evil health roller coaster, feel free to butt in again.
"You should try this new health supplement. It can't hurt." - Sure. I was looking for more pills to take. Let me check it against all my other meds and make sure there will be no conflicts and I'll just add it to the giant handful I take three times daily already.
"I wish I had the luxury of being sick instead of going to work every day." - I don't consider being sick a luxury. If I could go to work and have a regular life, I would be happy to.
"Illness is caused by stress. You just need to start coping better." - Let me whop you upside your head with a baseball bat for that one.

Again my all time top of the list of something to never say to someone who is sick: 'My uncle's neighbor's hair dresser's dog walker's niece had what you have and had this other treatment. I can't understand why you are getting this other treatment. Of course the niece died after a few months. It was pretty ugly near the end.' Gee thanks. I neededthat positive reinforcement that allows me to think of death and doubt my own treatment plan.


Some good things to say:

"I don't know what to say, but I care about you."
"If you need to cry, I've got plenty of tissues."
"I'm bringing dinner Thursday. Can you eat lasagna or chicken?"
"I'm going to the store tomorrow, what can I get you?"
"You are going through so much, yet you still have such joy. How do you do that?"

Other pieces of advice I would add to these is call up someone who is sick and just talk or even see if you can stop by and see them. Maybe they would appreciate a trip out to a coffee shop or being driven to the store if they have problems getting out on their own. Or maybe an offer to come over and help with some chores  particularly if you know they are going through a tough time. Offer to clean the kitchen, do laundry, etc.

Sick people are still real people. Think about what you would want someone to say to you if you were sick. Pretend someone stops by when you are in the middle of a three week long bout with the flu... what would you want someone to say to you.

Your doctor can fire you too.

Patients often talk about firing their doctor and moving on to a new one. Sometimes its bedside manner, perceived lack of compassion, or changing medical needs. I strongly believe that patients should have the ability to fire their doctor if they want. There is no reason why not.

As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.

Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too.  They are doing their best to treat their patients.

If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.

I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.

Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.

Health care reform and employee benefits

Here in the precocious state of Massachusetts which adopted health care reform in 2006, we already have six years of change. Are we better off? On some levels yes. The rate of insured here is around 96% if I can recall the latest statistic with my tiny chemo brain. But the problem of medical debt still exists at comparable rates to before 2006. But the good news in that is that the rates did not increase as I believe they have in the rest of the country.

So while we have progress here, we still need more. It would also be nice for the rest of the country to experience the key benefit we have had for decades - the pre-existing condition clause. That is been on the books here for a couple of decades. I would be interested to see the rates of medical debt nationally after a few years with the pre-existing condition clause in effect.

On the other side of the coin is that employers nationally are asking employees to pick up more and more of the cost of benefits that were once free to employees. On this I am a bit torn. While it is nice that employers provide benefits I do not believe that they are required to offer them all free. Free is a great price but its all part of package deal if you think about it.

Your salary plus benefits is your compensation package and employers are feeling the pinch. They want to keep employees happy and offer benefits and salary increases and then the insurance companies raise their rates by 10% each year, how are they supposed to afford all that?

There is always a hidden price. Somewhere that 'free' is being paid for. And if you want your health insurance to cover EVERYTHING think again. My health insurance does not cover chemotherapy wigs, which I found out to my dismay. But a way of reducing costs for insurance companies is to cut coverage for rarely needed benefits. I would prefer to pay for a wig and not pay $20,000 for each chemo round. Its a carefully balanced system and we can't always get what we want. Sometimes we just get what we need.

Evil Dr Google

I have posted about the evils of Dr Google before. As you can see from the image above (stolen borrowed from Facebook), I am not alone. My doctors are working on another mysterious medical ailment for me and I have an appointment in a couple of weeks to figure out what it is. When I know what it is I am sure I will blog about it. All I can say now is that its related to all the pain in my body that does not seem to be limited to my back.

While why I wait for that appointment, I am spending too much time on Dr Google seeing if I can self diagnose myself. This is a very BAD thing to do. I need to stay away from Dr Google in the meantime. It is so tempting to hop online and see if I can figure out what it is before the doctor does. Dr. Google is EVIL. I need more patience.

New BRCA tests

New BRCA tests have been developed that are faster and less expensive than the ones done by Myriad Genetics. I think this is great news. Myriad has claimed they patented the BRCA genes but these new tests were developed in Canada so maybe they escaped the long arm of the law.

I had blogged about this before and Myriad was still waiting for a final ruling on their patent. The Supreme Court had thrown it out because they said the laws of nature can't be patented.  This I agree with. Now that a second test has been developed on the genes it reinforces this idea that the genes shouldn't be patented. How could it be that a single company could have power over women needing this test? This is where laws need to catch up with technology.

Stronger cancer drugs

There is a new type of cancer drug being investigated. They are called carboranes:

"Over the past decade, we have seen an increasing interest in using carboranes in drug design," said Mark W. Lee Jr., assistant professor of chemistry in College of Arts and Science. "Carboranes are clusters of three elements — boron, carbon and hydrogen. Carboranes don't fight cancer directly, but they aid in the ability of a drug to bind more tightly to its target, creating a more potent mechanism for destroying the cancer cells.

In the study, Lee and his research team used carboranes to build new drugs designed to shut off a cancer cell's energy production, which is vital for the cell's survival. All cells produce energy through complex, multi-step processes. The key to an effective drug is targeting the process that cancer cells depend on more than healthy cells. By increasing the binding strength of a drug, a smaller dose is required, minimizing side effects and increasing the effectiveness of the therapy. With carboranes, Lee found that the drug is able to bind 10 times more powerfully.
"The reason why these drugs bind stronger to their target is because carboranes exploit a unique and very strong form of hydrogen bonding, the strongest form of interactions for drugs," Lee said."

They have been tested on breast, lung and colon cancer and are very successful. They are also being tested on other forms of cancer. What is significant about their strength is that you can take a smaller dose which will have a stronger effect but will have fewer side effects. I'm all for fewer side effects in life.

Of course more research is needed so it won't be around anytime soon. But I still call this a significant advance.

Every patient is different

Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different.

As you may know from reading my blog that one of the biggest thing that irks me is when someone tells you that their neighbor's cousin's dog walker's sister's friend had the same ailment as you 20 year ago and their treatment protocol was different and they just don't understand why you are getting something different. Its rude. It makes you doubt your own treatment protocol and doctor. And its none of their damn business.

So now this study (because we needed another study) says that 'Individualized Care is Best for Lymphedema Patients'. I didn't go to medical school and I could have told you that.

Living with lymphedema is no fun. I can't wear a watch or bracelet on my left arm - no matter how loose it is. If I do I have to wear a compression sleeve for a week to make my arm feels better. This surprises my doctors. I also have to wear a compression sleeve when I work out or when my arm feels like its acting up - like maybe today I will. I have to do the stupid little lymphedema exercises to help my arm. They are just annoying.

I have a friend who had lymphedema and then lost a lot of weight and it went away. I have another friend who is very thin and has to wear a custom sleeve every day - and has for 17 years. I have a lot of friends who had the same surgery and never got lymphedema. See we are all different. 

When medical standards change and they don't tell the patients

Back when I had thyroid cancer in 1981, I was followed by an endocrinologist for more than a decade. Then my endo retired and I switched to a general internal medicine doctor for a primary care doctor. Some where during that time, standards for follow up to thyroid cancer patients changed. Ultrasounds become the standard for following up on potential residual tissue or recurrence and were ordered by endocrinologist. I just went along my merry way with out an endocrinologist not knowing that I should have one.

In 2008 I went to the Thyroid Cancer Survivor's Conference in Boston and found out that I had clearly missed something and should have an endo. Then I started seeing an endo twice a year for blood work and regular ultrasounds and am back on the program.

I had felt somewhere I should have been told that the standards are changed and endocrinologists follow thyroid cancer patients for life. There is no real way patients have for learning about changing standards in care over time. We assume our doctors will tell us.

My previous primary care never was a good communicator and I have switched from her to a new doctor. She really was a communication failure and I rarely saw her, mostly her nurse practitioner, which is why she is no longer my PCP. If this change happened sometime after the early 1990s she should have told me at some point.

I have now learned to be more proactive about asking about changes in treatment. I think my new primary care also does a better job of telling me about changes in standards so I feel more comfortable about it. And I can always hop on to Dr. Google and see what he tells me so I can ask about them.

I got the d*mn memo

The current advice is to be 'Fit by 40'. Because as you age its harder and harder to lose weight and to stay in shape. As my 40th birthday approached, I told myself that I would take better care of myself when I was in my 40s.

As part of my birthday celebration (which included a planned Caribbean vacation):

• I joined a gym
• I got my first skin cancer checkup
• I joined a dating service after several years of being single (and met my husband)

I actually had a few years of being fit and healthy and then my pesky health issues started and that cancer thing, but now more than a decade later I am a gym junkie where I go three times a week.

So I did get the damn memo on being fit at 40 and take care of my health. Its not my fault everything else happened and put me in my current dilapidated state. But before I start the 'woe is me' mentality, I will say I am proud of myself for some of the things I have accomplished in that time.

• I learned to kayak and snow shoe
• I took up knitting and crocheting and hope to sell some items in a local store this fall
• I greatly increased my medical vocabulary
• I took a weedy neglected garden at the house we bought and now can say it will bloom from February through November (no small feat in southern New England)
• I made lots of new friends both on and off line
• I started a little blog.
• I think I just made lemonade out of life's lemons.

PCIP.gov

Remember that website. It stands for Pre-Existing Condition Insurance Plans. It is a US government plan for those without healthinsurance. Here are the eligibility requirements:

To qualify for PCIP, you must:

• Have a pre-existing condition
• Be a U.S. citizen, or live in the U.S. legally
• Have been without health coverage for the last 6 months

You are NOT eligible for PCIP coverage if:

• You have other insurance coverage, even if it doesn't cover your medical condition
• You're enrolled in a state high risk pool
• You have Medicare, Medicaid, CHIP, VA or TRICARE coverage
• You have job-based coverage, including COBRA, or continuation of coverage, even if it’s about to end
• You have a limited benefit plan

It is available for residents of  Alabama, Arizona, Delaware, District of  Columbia, Florida, Georgia, Hawaii, Idaho, Indiana, Kentucky, Louisiana, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, North Dakota, South Carolina, Tennessee, Texas, Vermont, Virginia, West Virginia, and Wyoming. 

All other states offer their own PCIP programs and you can find a link to them here.

The reason I am writing this post is because of this woman, Leslie Elder with four cancer diagnoses and no insurance, who died of cancer because she did not know she was eligible for insurance with these new plans. This is so wrong.

The new Affordable Care Act provides insurance to more people but I cannot say by any stretch of imagination that it is a 'simple plan'. Didn't Congress end up with a many thousand page document? Its a lot of information to get out there.

I wish we didn't have to whisper

Yesterday I finally gained some sense and trekked on down to the local pharmacy to inquire about a cold medicine that I can take. Its not as simple as you may think because I have no thyroid, I am allergic to Benadryl and must avoid all anti-histamines, and am on anti inflammatories so I can't have aspirin products. I gave the list of issues to the pharmacist and she gave me a suggestion.She said I could take it even though it warns against thyroid disease because she takes it and she doesn't have a thyroid either.

I unleashed my inner snoop and asked her why she didn't have a thyroid and she whispered 'I had cancer'. I asked her when and she said 4 months ago. I said me too but more than 30 years ago. That seemed to please her.

I can understand why she whispered 'I had cancer' because she didn't know if I would run and flee at the word, give her unwanted advice, or yell it through the store. But I wish we didn't have to whisper and people and their attitudes would change.