Tuesday, January 31, 2012

Getting rid of toxins

This has been a newer fad or rage or whatever you want to call it - getting rid of toxins in our lives and living happier and healthier. We now know to skip the aerosol containers, teflon isn't good for us, and nuclear waste is dangerous for a long time. There are the people who do a 'cleanse' where they eat healthy and drink weird things to purge their digestive system of toxins. (I'm not a fan of that one.)

The latest media hype is the toxic relationship - get rid of the people or relationships which are unhealthy for you. I can understand this. Do you have a 'user'/toxic friend? You know what I mean - the one who takes and never gives? Or the one who always talks about themselves and never wants to hear what is going on in your life? Or the one who constantly makes everyone wait on them? Or the one who never can get together - they say they want to get together and constantly cancel? Or the one who criticizes you and your choices continuously? Or the ones that are deceitful or untruthful? Some times it is the boss who motivates their employees through public humiliation. Or the co-workers who throw you 'under the bus' constantly or present your ideas as theirs? I can go on and on. These relationships can also occur between siblings, family members and spouses as well as friends and colleagues.

Toxic relationships are ones which hinder your happiness and cause stress and other problems. It is not a good relationship if they never do their share to help support it. A relationship is a two way street and both sides need to contribute. A relationship doesn't require daily contact to be a good one but it requires a level and quality of communication with which both sides are comfortable. Sometimes we need to take a step back and regroup and focus on getting rid of toxins in our lives. This may include cleaning out your kitchen cabinets or refrigerator, quitting a job, and ending other relationships.

I may have changed in the past few years and my feelings on this may have changed as a result. Through cancer treatment and then ensuing periods of recovery from gall bladder surgery and restrictions in my life due to my back issues, I no longer feel it is important or required that I waste time on toxic relationships or situations. I require a certain level of quality in the things I do in the more limited time that I have. I weigh opportunities to socialize and interact based on the physical and emotional effort required to participate. I can't just run off for a day of shopping with a friend as that would result in a few days of pain after to recover. If I go to a party, I can't stand around for hours chatting, I will need to sit down. But if I am sitting in the living room in the only chairs and all the action is in the kitchen (why do parties always end up in the kitchen), why did I waste my energy on a situation which causes physical pain? So correspondingly, why do I want to spend time with someone who causes emotional stress?

Sometimes relationships end because our circumstances change. Maybe we move far away. Maybe we change jobs. I have friends who I used to see regularly on hiking, snowshoeing, or skiing trips. Now because of my back I don't participate in those activities so we have grown apart. If I see those friends, I am happy to spend time with them but since our activities don't intersect anymore, we get together much less frequently.

Life goes on and we change and need to accept that. We re-prioritize the important things in our lives. We do not mean to offend or hurt others but sometimes we need to move on. A social 'detox' is sometimes what is needed to regain or retain a feeling of happiness in our lives. Just was we clean out the toxic chemicals in our cabinets, we clean out the toxins in our address books.

Monday, January 30, 2012

Insurance costs

Finally its about time is all I can say. By August 1, all employers must provide coverage for birth control for women at no extra cost. Religious employers such as churches had wanted an exception to the rule but the president has denied this. I support that decision. I realize that birth control may not agree with some religious beliefs but it is not up to the employer what medical decisions an employee makes. I am sure there are medical procedures out there that violate other beliefs. I am glad to see the end this bias. Viagra has been a covered medication since it was approved by the FDA, its about time birth control is as well.

This year the requested health insurance rate increase in Massachusetts, is (are you sitting down?) 2.3%. That's not even double digits. That is an amazing change from previous years.

'... the state Division of Insurance temporarily froze 2010 rates at 2009 levels after insurers that year requested average premium increases of 16.3 percent. While the health insurance companies initially protested, contending they would lose money, most eventually agreed to limit 2010 increases to about 10 percent. 

Since then, insurers have been cutting administrative costs while also taking a harder line in contract negotiations with health care providers. Hospitals and doctors, for their part, have been working to deliver care more efficiently and fend off the possibility that the state might move to regulate how much they receive from insurers.'

This looks more and more like change for the good to me.

Finally, more than 1.2 million people, or approximately 1/5 of the total population of Massachusetts, are being treated by doctors who are given a budget instead of paid on a fee for service basis. The legislature is working to create laws to make this the standard but it is already in place for many.

'Adoption of these "global payment" plans is driven by a desire to control soaring health insurance premiums by giving physicians an incentive to be more sparing in their use of expensive procedures, such as sophisticated scans. But it is also motivated by an eagerness to encourage more preventive measures, and that in turn improves care, which often is disorganized as doctors lose track of patients who need follow-up calls, visits, or tests.'

Does this sound like more change for the good as well? I think so.

Why do I make such a big deal about the health insurance system in MA? Well first of all that is where I live. And second of all the state wide health care system has been in place for several years now and we are seeing the results of a similar system to the national plan. I think the health insurance coverage rate here is in the upper 90%. When people lose their jobs they have a choice in where to get health insurance - either COBRA which is expensive or a state provided plan which usually is cheaper. The state plans are not as comprehensive as some private plans but are more affordable and available to all - no pre-existing condition exemptions, etc. Actually in MA, there has been a law preventing bias in insurance for pre-existing conditions for about 20 years now.

So what we have here is a little example for the rest of the country on how a change in health care might actually work. I see stories on Facebook and elsewhere about people who have a pre-existing condition and now can get health care through a government run plan. They are appreciative of the plan and happy to be alive.

I am not sure why people are against national health care. I know some people are Obama haters and hate everything he has touched just on principle. I know that people don't like the idea of being told what to do and being forced to have health insurance or be penalized. Some people are scared of change and are concerned that they couldn't go to their same doctors, etc.

The Obama haters can spend their time hating, being narrow minded, and bigoted but frankly to me that is just a waste of energy. He's president, if you don't like him vote against him. You can't get rid of him before November so suck it up and deal. Also, let's take the politics out of health care. People on both sides of the aisle get sick and need health insurance.

For people who don't like being told what to do - well I am a rebel myself but I like having health insurance. Without health insurance and two cancer diagnosis, I am not sure I would be here now and I'm quite happy to be alive. Finally, for those who are concerned about having to change their doctor or place of treatment, I'll just say doctors aren't like marriage - you don't always get them for life. And we don't know if that will be the case yet anyway. So don't count your chickens before they are hatched. Okay?

Sunday, January 29, 2012

Its just a sunburn - hah!


I am not sure why this article is so upsetting. Basically this woman in England was told for five months that she had a sunburn and it turned out she had inflammatory breast cancer - a very aggressive type of breast cancer with a 5 year survival rate of just 40%. I can't believe on how many levels this is so wrong. She had chemo and then a bilateral mastectomy and now it sounds like a recurrence has already happened.

To the doctors I want to say, 'you were stupid'. If your initial diagnosis isn't right, then you need to think a little harder. I can understand thinking a rash is sunburn. That is logical but if it didn't go away in a few days, then the diagnosis is wrong. I can understand thinking that a woman in her mid 30's is not a prime candidate for breast cancer and inflammatory breast cancer is very rare. But don't doctors go through the process of elimination and start with the most common diagnosis and work from there? If a sunburn doesn't go away its not a sunburn. What about a skin biopsy? What about a referral to a specialist? And please, a badly fitting bra? Get real. This is just bad medical practice if you ask me.

To the patient, I think you were right to keep pushing and questioning - it is your body and you know when something isn't right. The internet research you did led to the truth in the end. I hope the treatment you received isn't representative of the UK National Health because I am very unimpressed with the care you received that is documented in this article..

To the hospital, please accept some of the blame here. Your statement is wrong - you don't have excellent breast service.

"A spokesman for Warrington and Halton hospitals said: ‘We have an excellent breast service at the hospitals that provides a first-class screening and diagnostic service and aims to ensure that care is provided as quickly as possible when a positive diagnosis is made. 

‘We have met Mrs O’Neill and are pleased that her treatment is progressing well. We will be responding in full to the concerns she has raised about her treatment and looking at the steps that we took at the hospitals and if anything could have been done differently.’"

I certainly hope you will take review the process of diagnosis and treatment. By the way from the article it sounds like she has already had a recurrence. How can you be pleased?

Saturday, January 28, 2012

Numbers and research

Numbers and statistics are the backbone of medical research analysis. I am not a statistician by any stretch. I took a statistics class in college to meet a distribution requirement. After college I took a summer class at the little college down the street, Harvard, where it didn't matter if we had the numbers right (we took a vote - if everyone thought that 47.3% of 6,329,145 was around 3,000,000, we used 3,000,000) because it was the principle of the process. We needed to focus on learning the importance of how the numbers are determined and how to figure out their significance.

Another big part of statistical analysis is ensuring the numbers that are being analyzed are what you think they are - that if you think you have a pool of people who were born west of the Mississippi between 1950-1960 and now live in Florida, that you don't have anyone from Connecticut in it as that would skew your data. And that the same information was collected from all of them so you are not comparing apples and oranges. You want to compare red apples and red apples, not red apples and slightly yellow apples.


Here's an example of data being reanalyzed and people saying well maybe not but maybe yes. In 1995, the million woman study was started in Great Britain to compare diet and lifestyle and health factors such as cancer. One significant result was the link was seen between Hormone Replacement Therapy and breast cancer. Then everyone stopped HRT and breast cancer rates went down so the proof is there. But now there are claims of shortcomings and lack of causality. The new claims are: 'HRT may or may not increase the risk of breast cancer, but the MWS did not establish that it does...'

But still '"This report would not change how I counsel women, as multiple studies, including a randomized trial, have shown an increased risk of breast cancer from combination hormone therapy," Kathy Helzlsouer, MD, director of the prevention and research center at Mercy Medical Center in Baltimore...'

So where does this leave us? Somewhat doubting this one study but based on the findings of other studies and the drop in breast cancer diagnoses, we can still state it was correct.

Friday, January 27, 2012

Blah, blah, blah



As we approach the end of the month, the media is full of advice on how to keep your resolution to lose weight.Blah, blah, blah. This clip tells you to write down what you eat, get exercise, eat right, and weigh yourself once a week.

Here's my non-professional advice:

1. Eat right. This means no ice cream, french fries, pie, cake, donuts, candy, chips, fried food, or anything snack with more than 5 g of fat or 200 calories except on special occasions. And special occasions do not happen every day. Also, eat a piece of fruit or a serving of vegetables with every meal. Have an apple as a snack, instead of a bag of chips. etc. If you must go to fast food, pay attention to those evil calorie count signs and get a healthy option and not a double bacon cheeseburger, large fries and a large soda. How about a regular burger with an apple and a bottle of water? Plan your snacks by bringing them with you. Don't over complicate things with fancy diets unless you can cook.

2. Get moving. Go to the gym, go for a walk, yoga, zumba, weight training, bike riding, skiing, snow boarding, roller blading, surfing, Just move your butt. No excuses. No drive throughs - park and walk into the bank, restaurant or whatever unless you have three screaming small children in your car. (If you do have three small children you are probably running non stop after them but take them to the playground and run around with them - that counts too.)

3. Its not a diet its a life style change. A diet implies a short term effort. A life style change is permanent. You didn't get fat in six weeks so you won't get skinny in six weeks. Be realistic. Change your eating habits and expect to lose a pound or two a week or 5-8 lbs a month for a permanent change.

4. Weigh yourself once a week at most. If you weigh yourself every day you are on the perpetual yoyo. You lost a pound so you celebrate and eat a pizza. You gain a pound and you are depressed so you eat a pint of ice cream.

Here at our house we are trying to lose weight. I had a banana for breakfast and will go to the gym and come home and have egg beaters for a second breakfast. (I don't have time for breakfast first because I snoozed after the alarm.) Lunch will be a turkey sandwich and maybe some pretzels and an orange. Dinner is asparagus and chicken or something in a crustless quiche, omelet, or souffle (which are all the basically the same ingredients but cooked differently) and a salad. I might have some crackers for a snack this afternoon too. And maybe some wine with dinner. I am not expecting miracles from my scale but I am trying.

So blah, blah, blah. Go figure out your healthy plan and start moving to meet your resolutions.

Thursday, January 26, 2012

That Avastin Debate

This is now either 'the debate that will not die' or plot number 9,487, 321 to confuse the patients. Two new studies have shown that treatment of Avastin with chemotherapy reduces breast cancer tumors to the point that they are non-existent at surgery. How wonderful, how exciting, how confusing.

Avastin is that drug that has been determined by the FDA not to be helpful in treating late stage breast cancer. But two new German studies have shown positive results for early stage breast cancer treatment. However, there are three big ifs here before anyone starts jumping up and down with excitement:

1. Avastin has nasty side effects.
2. The long term outcome of the women in the study is not yet seen so there is no guarantee the cancer won't return.
3. Different types of chemotherapy were used in the two studies so we may not be comparing apples and oranges here.

I am not sure if this is news or not. Yes it does show new research (and there is always new research going on) but there are too many ifs here. I think eventually it will be news when we know about long term results and the issue is resolved of the different chemo protocols used.

As usual I believe this is a case of the initial results being over hyped without knowing if it will really work in the long run. The drug companies announce the latest results of research and some how the media takes it and it ends up being news before its time.

Wednesday, January 25, 2012

As long as they don't nag

In a new payment system in Massachusetts, doctors will be paid per patient and not per service. The better a patient does the higher the reimbursement for the doctors. Go read this article to explain the whole thing but here's the basics:

This new system works like this:

"Primary care doctors, specialists and hospitals typically have billed insurance companies and government programs such as Medicare and Medicaid for each individual service they provide to patients, including office exams, lab and imaging tests, emergency room visits, and hospital admissions - with few limits on the number of services.

Critics say this system, called fee-for-service, encourages doctors to provide more treatment than is necessary and discourages coordination of a patient’s care among different providers.

In the new system of “global payments,’’ insurers generally put doctors on an annual per-patient budget. This budgeted amount is higher for patients with complex medical problems.

Doctors are expected to cover all costs associated with caring for the patient with this flat fee. When primary care doctors keep patients healthy and prevent expensive hospital stays and specialists’ visits, they get to keep more of the budgeted payment. If a patient’s care exceeds the budget, doctors lose money on the patient.

This arrangement may sound uncomfortably familiar to “managed care’’ popular in the 1990s - when patients accused doctors on budgets of withholding needed care. But insurers and doctors insist this time will be different, because the budgeted amounts are more generous, and because insurers are tracking the quality of care doctors provide to make sure they are not denying necessary care to stay within their budget."

Everyone will need to have a primary care physician or nurse practitioner or physician's assistant to oversee their care. By getting people in for preventative care they hope to keep costs down. Sounds logical - it turns the practice of medicine into a proactive system as opposed to a reactive system as much as possible.

I think I like this idea. It will help catch bad things before they get really bad. The more expensive the medical adventure is the sicker you probably are.

I don't mind being reminded to get annual mammograms and annual physicals but just don't start nagging me about the rest of my health issues. I really am trying to lose weight - for the record I wear a size 12 and would prefer to wear my size 8 wardrobe - and I know its going to take a while. I also like wine with dinner and cheese and crackers for a snack and have zero self control when faced with a box of donuts (but only eat one). At my job that I go to my desk has a clear view of the snack tray in the kitchen as well as the table which frequently has an open box of donuts, bag of bagels or hermits. If I am nagged I get cranky and we don't the world with a cranky me.

Tuesday, January 24, 2012

Pink Ribbons Inc

A Canadian movie, Pink Ribbons Inc', was a selection of the 2011 Toronto Film Festival and is opening in Canadian theaters next week. It is a movie I think I would like to see. Here are the trailer and the origins of the film to see.

From what I understand of it, the controversy stems from a couple of levels - first of all the pink money making machine that has become breast cancer awareness and the fact that all this pinkification for a cure has not resulted in anything more than some medications and slightly longer life expectancies - not a cure as labeled. These are the problems I have with pinkification in the first place - breast cancer is a bad thing and it should not be an income stream for anyone.

I think the Komen foundation has done a great deal to help raise awareness of cancer in general and breast cancer more specifically and deserves a lot of appreciation for their efforts. However I have never made the connection from pink football helmets and a cure for breast cancer. And as with the rest of the so called 'war' on cancer, we have lots of ideas but no cure yet after decades and even centuries of trying. My advice to anyone who is curious - don't buy pinked products and go see the movie.

Monday, January 23, 2012

A little factoid - cancer changes your life especially for younger people.

"Women younger than 50 who survive breast cancer face an array of quality of life challenges: psychological stress, weight gain and decline in physical activity....They also struggle with reproductive issues such as infertility and early-onset menopause.

In studies that were published between January 1990 and July 2010, researchers ... found that overall quality of life was compromised in the younger survivors with both physical and mental health problems."

And it took a bunch of researchers to figure this part out. Us cancer people knew this long before the researchers figured it out. (Maybe the researchers are a little slow?) "Young breast cancer survivors are cured but not okay" is the name of the article but they should really just delete the word breast and let it read 'young cancer survivors'.

A cancer or other 'yucky' diagnosis puts you on the medical roller coaster from hell. It also says 'you are now officially a sick person'. Only sick people get those ailments - meaning anyone but us. Cancer is meant for someone else, someone we don't know. It can't be us. So we mentally shift from being that young healthy person and end up being called a sick person.

The trailer from the movie "50/50" (which comes out on dvd tomorrow), that I haven't yet seen, includes portions of the scene with the lead character is told he has cancer. His responses include 'but I recycle' with total confusion, which sums up the basic reaction to the diagnosis. We don't know how we ended up on this little roller coaster but we did. We will never feel the same way again.

Physical and mental problems - psychological stress, weight gain, decline in physical activity, and the list goes on. Life is never the same after those three little words 'you have cancer'. (Actually I was told 'you have a 1.4cm malignant tumor'.) You can't undo it. Some people talk about finding a new normal but I am not sure there is such a thing as the new normal. We adapt, we change, and we try to go on.

Sunday, January 22, 2012

You won't know until you try it

Do you remember the commercial for Life cereal? 'Mikey likes it!' As children we were encouraged to try new things - maybe we would really like lima beans if we would just try them. (And I knew the cat would eat them if I put butter on them.)We were also the daredevils who had not yet developed the fear of pain as we rode our bikes down the steep hills (without helmets as they were not yet invented).

Some how as adults we remain skeptical of many things and have developed a healthy sense of self preservation and aversion to pain and ailments. I see this all the time as friends and people I know through online boards are not sure if they should try a medication because of fear of possible side effects. Maybe the years of seeing the single page of medical ad followed by the two pages of side print on side effects has brainwashed them.

I find this mind set a bit silly. Do they have ESP and know they will get all the possible side effects? If your doctor is recommending a medication, perhaps they are doing it to either potentially save your life, relieve pain, or cure you? They went to medical school and are more familiar with the medication than you are. Yes we can do our research and convince ourselves we will not benefit from the medication and will develop all the side effects known to man. STOP! The side effects don't happen to everyone.

If you are concerned about a medication and its side effects, talk to the prescribing doctor and ask them to give your more details on it and what you should be on the look out for. You can do research on websites such as drugs.com or rxlist.com and see the real numbers of what the chances are of a specific side effect. Tamoxifen is known to rarely cause uterine cancer - but this is so far fetched that it is not listed as a side effect on either site.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I was on Lyrica for about 2 years for back pain until it stopped working for me. During that time a friend said to me that her doctor had prescribed it to her but she was concerned about the side affects and possibly becoming addicted to it so she wouldn't take it. I recently heard from her and she is still dealing with a lot of pain and not taking it.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I am now on my third or fourth back pain medication. When one stops working and my doctor suggests another one, I give it a shot. I don't hesitate at this point. If I am living a pain filled life and there is any hope for pain free living, I am eager to try it. After breast cancer the idea of Tamoxifen and then Femara to significantly help prevent recurrence, why not. I am having osteopenia issues and my oncologist has said she wants to keep me on Femara even though it may be increasing my bone loss but she said then she would put me on something to counteract that for a year or so after I am done with it. I can live with that. I may not be happy about it but I can cope if the alternative is greater risk of stage IV cancer.


All I can say is you won't know until you try it. What is it about the fear of the unknown that keeps us from trying new things that could broaden and saves our lives? There are millions of therapists happy to make money off those who suffer from this fear.

Saturday, January 21, 2012

Positive Pets

"Pets provide comfort and relieve stress from cancer." I can agree with this. Every day when I was in treatment I would hit the 'wall' and need to rest and gaze at the crappy day time tv shows (this was before the DVR) with glazed eyes, a cup of tea, and the cat sitting next to me. He would very patiently snuggle when I wasn't feeling well and absorbed tears and commiserated with me on the state of the world (if his food dish was empty). He is no longer a spring chicken at the ripe old age of 17. He is slowing down.

In the vet's words at his annual check up a few weeks ago, his blood levels are mostly fine but he will probably sleep 97% of the time these days. He does. He greets us at the door each day when we come home (provided he has finished his latest nap) as if the world is coming to an end because he is hungry and needs attention. He is the 5am cat - his definition of the proper breakfast time. He is adept at sneaking into the bed in the middle of the night and we wake up to find him with his head on the pillows, his body under the blanket, snoring away between us. Occasionally he acts like 'psycho kitty' and runs around like a crazed kitten on catnip for a few moments but we know he won't be with us forever. We already plan on adopting two cats after he is gone - one for each of us.


Back at my first cancer diagnosis, I lived at home with my parents and we had three cats, one of them, BC, was mine - she stayed there long after I moved out - I got her while I was in high school. She lived to be 24 and died in (I think) 2001. BC was also a comfort as I went through surgery and recovery.

Medical research is finally catching up to what is known by pet owners everywhere: "... found that pet owners were more likely to survive at least a year after hospitalization for a heart attack or chest pain compared with non-pet owners. Among pet owners, 94 percent survived compared with 72 percent of those who didn’t own a pet."

My non-medical advice is if you are diagnosed with something yucky like cancer, adopt a pet if you don't have one.

Friday, January 20, 2012

She can talk about it on her own terms

Oh, the scandal! Paula Deen has had diabetes for three years and didn't tell all of us until this week! She should have told us immediately. And now she must change her cooking style and switch to raw veganism so that she will lose weight and control her diabetes and prevent an early death! We should have been told!

Who am I kidding? I completely support her decision not to go public until she was ready. In her own words she said I wanted to bring something to the table when I came forward.” She and her sons have started a foundation called Diabetes in a New Light and is now a spokesperson for Novo Nordisk which manufactures diabetes medications.

What else is she supposed to do? Is she supposed to change the world, create global peace, and find the cure for diabetes? Isn't this enough? I think she is doing a lot of good with the foundation and as a spokesperson.

When anyone gets a 'not so fun' medical diagnosis, they need time to digest it and get a treatment plan going. They also may need to adapt their life style and make additional changes - maybe changing employment or more. The last thing someone with a nasty medical diagnosis should be required to do is to announce it to the world until they are ready. She gets to talk about it on her own terms.

Thursday, January 19, 2012

A picture paints a thousand words

These pictures tell the story of what its like to be a cancer patient - The battle we didn't choose.















This is not me, these pictures are from CNN.

Wednesday, January 18, 2012

Research

Dr. Susan Love has established the Army of Women where they are trying to recruit 1,000,000 women to help in medical research focused on breast cancer. The point of this is to find more women to participate in surveys to validate other research.

The Army of Women sends out emails periodically that describe the requirements for their latest survey and asks for volunteers who meet them to participate in the studies. They may just be answering questions online or they may be more in depth with direct contact with researchers. I joined this group a while ago and just participated in my first study. It is on Endocrine Therapy after Breast Cancer. You can participate in it if you are a woman, live in the US, have been diagnosed with breast cancer, and are currently taking or within the past 12 months have taken Tamoxifen, Arimidex, Aromasin, or Femara. I strongly recommend that if you meet the criteria to take the survey and if you don't  just join for the Army of Women.

This type of research is a new twist and is very valuable. It allows researchers around the country to add more and more participants to their studies and increase its validity. You know after new research is announced that more research is needed? This is an example of the additional research. If you wanted to participate in a Clinical Trial and couldn't find one, this is a good substitute. Its a way of giving back and helping other women who are diagnosed in the future. So go sign up!

Tuesday, January 17, 2012

Doctors and manufacturing companies

Doctors are the main marketing target of the companies who manufacture drugs and medical devices. However the companies are restricted from 'buying' their 'prescription' pads. There is an important relationship between the doctors and the companies - doctors can provide valuable feedback to the companies on the efficacy and side effects their products. Its sort of like never ending clinical trials. The companies want to make sure that there is an open line of communication from the doctor back to them.

The problem is it really can't be an open line from the company to the doctor. The doctor needs to make medical decisions based on the best interest of the patient and not based on the best interest of the manufacturer who bought him dinner last week. Now the government is stepping in and will force companies to publicly report all payments made to doctors who are not on their employees and will fine them significantly if they don't comply.

I'm not a fan of the government having to make silly little laws that will create huge piles of paper work - or gigabytes of data on line - which this certainly will. There is enough paperwork around in the world already. However I do want to know if my doctors receive payments from any companies and could in anyway be swayed by their financial compensation.

I definitely would want to look up my doctors. Partly out of curiosity and partly out of concern that they are giving me the medications that are best of me. One of my doctors, who shall remain nameless, always seems to want to switch my medications for newer ones - always the newest brand name drugs. I assume that he is doing it because these new meds might help me more than the ones that have been around for a while or ones that I have already tried and didn't really work. I mean that is why we have all this medical research going on - to come up with better treatments for the patients.

If you look at it from the company's point of view, they are restricted from marketing to their primary targets. As a marketing person, I can see how that would be very difficult. Putting ads in consumer based magazines about their new medications is one way to do it but then patients go blind trying to decipher the fine print of side effects before asking their doctors about them. Its a tough balance but I like to see the restrictions so the doctors make medical decisions on my ailments not financial ones on their wallets.

Monday, January 16, 2012

Quality of life

Medical treatment can be pretty nasty. They cut out body parts, stick needles and other things in you, put poisons in your body, take pictures of your insides using nasty dyes (a/k/a contrast agents), and give you little pills that come with paragraphs of fine print detailing possible side effects. Then they say try not to throw up, get some exercise, eat right, don't drink, stay out of the sun, get some sun, use sun screen, watch out for the chemicals in the sun screen, organic food, whole grains, blah, blah, blah.

We stumble from doctor appointment to doctor appointment with lists of unanswered questions, looking for a cure. We eat bad hospital cafeteria food, and confirm we are safe at home while being weighed for the billionth time.

But we still need to have good quality of life. I mean that's one of the the most important things about being a patient. If we can't have a cure for cancer, we need to settle for good quality of life. What is quality of life? I think it includes things like taking time to smell the roses, going to the beach, enjoying a meal, and sharing a laugh. It does not include nausea, needle pokes, medical bills, and signed releases to relieve the hospital blame in case of accidental death.

Sunday, January 15, 2012

Bringing the Mountain

We used to dial our rotary phones. We also used to drive long distances to see specialized doctors. They involved trips into the city where swearing occurred regarding traffic, bad directions, and inability to find parking along with stress on the patient and the overwhelming desire not to throw up in the car on the way home from chemo. Then some one was really smart (beyond the rocket scientist level) and decided to bring the hospital to the patients.

The latest fad in medical treatment  is to take all the fancy hospitals in Boston and have them set up medical facilities, particularly cancer treatment centers, in the suburbs where all the patients live. Why didn't someone think about this a long time ago? Medical treatment is about the patient so we might as well treat them where they live.

Actually the hospital where I am treated is not listed in this article because they moved to the suburbs in the late 1970's and they opened their new cancer wing in about 2005.

When I was diagnosed with breast cancer, I had a friend who was also diagnosed and opted to go to Boston for treatment. During her treatment, she hated driving in and out for treatment. It took most of the day by the time she allowed for rush hour, parking, treatment, and drive home. As I said before I am very appreciative of the fact that I drive through suburbs and can even avoid school bus routes and shopping malls as needed to sneak through the back roads to get treatment. I can even go to their really local office about two miles from home for somethings including PT and blood work.

Medicine is beginning to recognize that its all about the patient and patients are getting smarter as well as older. They decided where they want treatment and as they age they become reluctant to deal with things like city driving and parking. Its not just doctor patient communication and nice hospitals, but its about making it easier to get to treatment in the first place.

Saturday, January 14, 2012

This doesn't make me feel comfy

Who are the radiologists we never see? They are the mysterious, hidden doctors who read our x-rays, MRIs, CT, PET, and all sorts of other images of our body parts. They make these nice little observations 'a verycomplicatedjargonfilled thingy' and then give a recommendation of further imaging, biopsy, or some other fun filled medical adventure. They are the unseen doctors who greatly contribute to the big medical decisions in our lives.

They must have gone to medical school and gotten lots of training to be able to read and interpret all these images. I am sure they do all sorts of other things as well as a result of their training.

But what if they cheated on their exams to get their degrees and certifications? How would you feel? Well it turns out that many of them may have according to a recent CNN article. What has been going on is that radiology residents have signed an agreement not to share the tests before taking them but then after the tests they write down all the questions and answers they can remember. These are shared with other residents who memorize them. Approximately 1/2 the questions remain the same each year. Some people call this cheating, some people don't.Some people claim this method is necessary because of the obscure topics in the test. As a result of all this, the tests and their format will be changed starting this year so all those residents who memorized last year's information are SOL.

I am not getting into the definition of cheating. I do have a concern that we trust our bodies with people who we assume know what they are doing. Memorizing test questions and answers doesn't mean they know anything other than how to memorize. Too bad I have to trust them with my medical decisions.

Friday, January 13, 2012

A bad start

As part of my personal deflabbification project, I had my three month evaluation at the gym yesterday. It is also a prelude to my first paid personal training session this afternoon. First of all my weight is exactly 0.6 lbs more than it was at my last weigh in in October. The trainer said that is probably just lunch and the holiday pigging out but still it is in the wrong direction so it is a bad start.

Our next step in the evaluation was to figure out what I can do for exercises in my PT sessions. The answer is she is going to think really hard and come up with some things for later today. These are the things I can't do in terms of working out - no treadmill (because it has a little bounce and is bad for my back), no twisting, no weights over 15 lbs, no heavy weights over about 2 lbs on left because of lymphedema,  no exercises with weights on right arm that involve bending my elbow because of tennis elbow, and I can only work out every other day because of my back and bursitis. But otherwise I can do anything I want. She called me 'limited'. This will be interesting. But I am determined.

I have a bet with my husband as well so there is money and ego on the line here. Which ever of us loses the greater percentage of body weight before the end of March gets bragging rights and a gift. Bragging rights are the most important.

We have been doing weekly weigh ins at home and my weight has not been going in that much of the right direction. Very aggravating.

Thursday, January 12, 2012

Numbers in the wrong direction

This is clearly a number going in the wrong direction. 2011 - 48,020 cases and 2012 - 56,460 expected cases. This is the number of cases of thyroid cancer in the US. When I was diagnosed there were around 10,000 cases a year. I thought the number was up to 35,000 or so. But how did it get to 56,460?

Thyroid cancer used to be a relatively rare cancer and that is no longer the case. These numbers make it more common than oral cancers, all leukemias, and pancreatic. Yes it is a relatively curable cancer but still it is cancer and its diagnosis represents the beginning of a life time of watching.
This visual gives a better idea of the rate of increase and is from the National Cancer Institute. That is a bad cancer chart with its increase. There are lots of discussions on why this cancer is increasing in prevalence - increased detection, radiation exposure, cell phones, dental x-rays, blah, blah, blah. But they don't really know.  To put it in perspective, thyroid cancer is diagnosed at the rate of 1/4 of that of breast cancer or lung cancer.

Once you have a thyroid cancer diagnosis, it means you no longer have a thyroid. And that little tiny gland is very important in maintaining your body. You have to constantly have your thyroid levels checked and some people are never able to get balanced on their synthetic thyroid hormone.

I think thyroid cancer has not had a lot of focus because it wasn't very prevalent and has relatively low mortality rates. Perhaps that needs to change to focus on slowing the incidence and what can be done to reduce it.

Wednesday, January 11, 2012

A blip or a sign of the times

Health care spending has slowed drastically. In 2010 and 2009, health care costs grew at a paltry 3.9% which were the lowest increases in decades.

"The main reason for the slowdown was that Americans were more frugal in their use of health care, from postponing elective surgery to using generic drugs and thinking twice about that late-night visit to the emergency room."

So when the economy tanked in 2008, people started to cut back on their spending, including health care - which is usually the last thing to be cut. One side of the argument on why this happened is employers are putting more downward pressure on health care costs - in other words this would be a sign of the times and will continue to happen. On the other side is that people are simply postponing what they can and when the economy picks up, the costs will go back up - in other words this would be just a blip.

My take on this is that in the latest economic debacle/bank bailout/mortgage scandal/foreclosure central, the impact on the economy forced many people to make deeper decisions with longer term impact in their lives.We see these little decisions everywhere. When we go to the grocery store we now bring our own bags. This used to be considered a 'crunchy granola' decision at best. In addition we bring our own bags to lots of other stores or skip bags for smaller purchases we would automatically take in the past. Walkability indexes are now available - mine is a 62 in case you were wondering.

We consider gas mileage in a car purchase - something that hasn't received such scrutiny since the gas crisis of the 1970's. We shop at farmer's markets. 10 years ago there was one local one, now there is one in almost every nearby town, six months of the year. We care where our food comes from - produce, seafood, and meat. Alternative medicines are now in the forefront - acupuncture, naturopaths, etc. We don't just look for an MD after a doctor's name when we go for treatment, we want other credentials. The concept of integrated and personalized medicine are apparent.

I think with out of the economic downturn, people have changed a lot of their values. People think about their pennies and what they put in their bodies. This has gone on to affect health care spending and acceptance of alternatives and new ideas in treatment. If you had said to me 18 months ago, would I ever consider acupuncture - I would have said an emphatic no. Now I go every two weeks.

So I think this is more of a sign of the times - not that employers are helping reduce costs but that patients are people and are making their decisions more carefully. They look for alternatives to the ER, they look for homeopathic treatments instead of rushing to their primary care. I think this will go on.

Tuesday, January 10, 2012

That scary term - managed care

We all can remember when the concept of managed care came out. It was done by insurance companies and designed to benefit us. Yeah right. It meant we couldn't see the doctors we wanted because of they are out of network or the care we needed was denied. Well, now there is a new concept in health care which has two key differences from managed care.
  1. The name. Its now called Accountable Care.
  2. Its now focused on improving patient care. The managed care version was designed to "benefit everyone but patients".
So we have a fancy new name that is supposed to improve patient care. Why do we think us cynical Americans have no faith or trust in their health insurance companies? Because possibly we don't trust them? You mean the people who approve a procedure and then decide to 'unapprove' it once you have it done and you are stuck with a giant bill? Once burned twice shy, as the saying goes.

So what is Accountable Care anyway? Its called team work. Accountable care includes doctors, nurse care managers, pharmacists, health coaches, and more. Its a new concept being piloted by Medicare in certain parts of the country, including Eastern Massachusetts.

"Primary care doctors and some specialists increasingly are leaning on other staff members to help care for such patients. Staff pharmacists explain patients’ medication schedule and watch for negative drug interactions, health coaches teach people about their diseases or help them to lose weight, and nurse care managers take on a wide variety of tasks, including making sure a patient gets necessary lab work and follow-up care.

“Patients will feel that there’s more contact, that there are people who know them better, who are looking after them and providing them with more feedback,’’ Gilfillan said."

Traditionally doctors are paid for face to face appointments with their patients. Under Accountable Care,they will be compensated and rated on: "the care that their patients get throughout the health care system. That’s meant to encourage more coordination between hospitals and with other providers, so that physicians, for example, become more involved in the care their patients receive at rehabilitation facilities."

As a professional patient, I am all for looking at the big picture. Now I think medical facilities and doctors are concerned with the care that the patients receive under their care and less on the overall big picture. They don't care because there is no compensation for other care or for focus on the big picture. Patients are responsible for juggling appointments and getting test results from one place to another. We can't see our doctors or anyone with the flexibility we need to get the emotional support that our health is really being cared for.

When did the 'care' leave 'health care'? Maybe under 'accountable care', there will be 'care' again. But its still a pilot program so we will need to be patient patients while we wait for the 'care' to return.

Monday, January 9, 2012

Eating well vs. eating right

I have new books to read: 'Omnivores Dilemma' and 'Food Rules' - I am on the waiting list at the library for these as of five minutes ago. Michael Pollan, their author, will be speaking in Boston later this month - but tickets are sold out (damn). I need to learn more about this concept of eating well vs. eating right. There is a brief article on it and I want to learn more.

Here is one quote: "You don’t have to eat organic to eat healthily. Eating real food, whether it’s organic or not, is going to do a lot for your health. Any apple is good for you. The pesticides are probably a problem, but the benefits of fresh fruits and vegetables outweigh them as far as we know. And there are ways to minimize pesticide exposure by washing and peeling."

And another: "Eating real food, eating meals together with family and friends, cooking, paying attention to where your food comes from..." 

I can do this part. We don't eat processed food. Well not really. I sometimes make bread but not always. I do buy lunch meat for my husband's lunches but they are usually turkey, ham, or roast beef. No salami (unless he sneaks it), definitely no bologna or preprocessed crap. My husband had a cold last month and wanted soup for dinner. I bought chicken and made him soup. He asked me why I didn't just get a can and open it but that's not me. We don't have cans of soup in the pantry, we have containers of frozen home made soup in the freezer. We also have cans of beans and things like that. I don't buy prepared food, I buy ingredients.

I do have problems with parts of this. I like eating apples with their peels and am too lazy to peel them before I eat them so maybe I am getting some pesticides. But I did get a bushel of organic apples this fall that we are (finally) almost done eating. I look at the fish counter, and try to remember which I am supposed to buy farm raised and which wild. I get confused so I usually try to stick with local and wild because that means they came off a boat in Boston harbor as opposed to off a plane at the airport.

I think I am doing some of this right but I am sure there is more. We do eat vegetables and fruit often. My husband complains when I make a sandwich using 'cardboard' bread - the stuff with fiber and whole grain. On Saturday night, I roasted a chicken, made butternut squash and turnips, salad, and sauteed leeks for dinner. I thought that was healthy. Last night, we had left over chicken. Tonight we will have left over everything again, and tomorrow, and Wednesday. We did lapse our salad every night rule for about a month. I got lazy and I had a cold but we are back on track.

So as part of being healthy and taking care of myself, I want to eat well not just eat right.

[Sorry another boring post.]

Sunday, January 8, 2012

Fixated on our health

As a country we are fixated on our health. The media, when it is not focused on that political process that is very annoying right now, is obsessed with healthy fixes for the new year, New Year's resolutions, eating right, exercising, losing weight, dieting, blah, blah, blah. I figure, if I can't beat 'em, join 'em - but I'll skip the political crap (and crap it is) and stick with the healthy stuff.

Somewhere I read recently that the key to losing weight is 70% exercise and 30% food intake. Or is it the other way around - but since I can't find the link I am not sure. So I'll just plan on doing both.

Since the media seems that we can't read articles any more and need slide shows and lists to learn anything.We can read about controlling portion size or skipping fat free foods and the need to pump iron in slide show format. What happened to reading paragraphs? Is it because memory and mental function have started to slip by age 45? Or is it because we are a bunch of dumb Americans who are not educated as much as other countries?

We obsess about obesity prevalence, laziness, going to the gym, lack of exercise, blah, blah, blah. What happened to common sense? Eat good foods, get up off our sofas and move around, stop getting in the car to go everywhere and walk a little bit, take the stairs not the elevator. Skip the fast food and eat a salad. Take time to stop and smell the roses. Then ignore the political crap and have a nice day.

Saturday, January 7, 2012

Breast cancer vaccine?

Here's a perky article telling us that the Dept of Defense has developed a vaccine to prevent breast cancer recurrence. It is just ending its stage II trials and will start stage III shortly. If successful through this phase, then they can apply for FDA approval - in five years. That really isn't that far away and they are currently recruiting participants.

With out getting technical, which I am not really capable anyway, the vaccine relates to the Her2 status of breast cancer and works with the body's immune system to reduce recurrence rates. In trials, it reduced expected recurrence rates by 50%.

Most breast cancers, like mine, are Her2 negative. So, if it is using the Her2 protein and I have a negative status, will it work for me? I am confused. I need a translator here.

"The vaccine, Peoples explained, targets a protein commonly over-expressed in breast cancer cells called human epidermal growth factor receptor 2, or HER2/neu.

Cancer vaccines typically target some protein or antigen expressed on cancer cells, he noted. “The idea is to train the immune system to recognize that protein or piece of protein that’s highly expressed on cancer cells, but not on normal cells,” he said. “That way the immune system can differentiate what’s abnormal and normal. If the immune system can recognize it, it marks it for death, basically.”"


"The researchers targeted the HER2/neu protein, which is expressed at varying levels in women with breast cancer, then honed in on the 60 percent of women who express the protein at low to intermediate levels. The vaccine is a mix of the E-75 peptide of the HER2 protein and an immune system stimulant.

If its low to intermediate levels maybe it is for me. I am confused. One note is that if you look at the recruiting criteria - they don't want healthy volunteers - I guess if you have had cancer you are not considered healthy. I do find that slightly ironic. You may call me unhealthy

Also, its all about the bottom line. The DOD developed this vaccine because breast cancer is one of the prevalent diseases seen in military beneficiaries - they want to save money.

Until my doctor can explain this to me, I'll just put it in the "if we can't kill them, lets confuse them" category for now. I see my oncologist in March, I'll try to stretch my tiny chemo brain to remember it until then.

Friday, January 6, 2012

Finding cancer information

There is lots of information out there on cancer. Some of it is very good and some of it is a load of crap. Figuring out how to find the good stuff is important. Here are a few tips:
  • Use reputable sites. Look for ones which have some credentials behind them. The American Cancer Society is a great place to start at www.cancer.org. Also try the websites for specialized cancer medical centers such as Dana Farber, Mayo Clinic, MD Anderson, Cancer Treatment Centers of America.
  • Medical blogs and newsletters. Many of these same sites have newsletters or blogs focused on cancer in addition to more general ones. Dana Farber has just launched a cancer blog. Mayo Clinic has a Living with Cancer blog and newsletter. Johns Hopkins has a specialized monthly newsletter for breast cancer.
  • General medical sites such as WebMD can provide solid information on procedures and tests even if they do not have as much detail on your type of cancer.
  • Ask the Experts sections can decipher the technical side of the information you find as well. See this section on the Mayo Clinic's site.
  • Cancer type specific information can be found at patient associations or non profits. Google 'cancer name' and the word association to find yours. A list of some of them can be found here.
  • Your hospital's website. I am treated at Lahey Clinic and they have a lot of information on ailments and procedures/medical misadventures/tests. I usually look up every little medical adventure on their site before I go to have it. There are standards for each procedure or test but there may be different variations on things like - needing a ride home or how long it will take or preparation - that are specific to where you are treated.
  • A very good place to ask where to find information online is your doctor. They know where to get the right information.
Once you get to a site, look for their background before you believe anything you may read there:
  • Red flags include broken English, misspellings, lack of organization, broken links.
  • Look for date of last updates - on the very bottom line of the home page is usually a copyright date. Websites can stay up long after the creators are gone. 
  • Look for an About Us or other descriptive page providing background on the posters. If they have no credentials or aren't medical professionals, their cancer information has no credibility.
  • Any site claiming to have a cure, treatment, etc that can heal you if you send them money up front is a hoax. If it is a real treatment your doctor would know about it, you wouldn't need to buy it online.
One of the interesting parts of having a blog is the comments I receive. I frequently get comments from weird medical people telling me about their cures or wanting me to help them by publicizing their book or association or telling me how they can help me. I usually just delete them and/or block them. Yesterday a gentleman in Australia commented that he wants to talk to me to tell me about the beneficial side of cancer cells. Hmmm... I checked his credentials and he used to be a chiropractor and now promotes mind/body wellness which is all well and good but what does he know about cancer anyway? Maybe he has studied acupuncture and other alternative therapies but I won't waste my time.

There is lots of information out there but you need to check it out before you read it. If it seems too good to be true, it probably is.

Thursday, January 5, 2012

Sorry, I don't do guilt trips

Cancer deaths are decreasing each year - more than 1 million have been avoided through better screening, treatment, and prevention since 1991. But that is not enough:

'That sounds promising, but it's not as good as it could be, says Otis Brawley, chief medical officer of the American Cancer Society and CNNHealth.com conditions expert.

"Our data on cancer causation and cancer prevention tells us that we could have done a lot better," Brawley said.

Given all of the available information about how to prevent, screen for and treat cancer effectively, it appears that up to 200,000 lives could have been saved in 2008 if all of those known measures had been taken, Brawley said. More specifically, many of those deaths would not have occurred if more people hadn't been smoking over the past 20 years. That's because it takes about 20 to 30 years of smoking to develop lung cancer.'

And of course we need to factor in the inactivity/obesity/high calorie intake which is about to to take over tobacco use as the number one cause of cancer.

"Access to treatment is another major issue in avoiding cancer deaths, Brawley said. A substantial minority of cancer patients do not get the treatment they need, many times because of lack of insurance coverage.

More science needs to be done on other possible causes of cancer from environmental causes, such as air pollutants and chemicals in plastics, Brawley said."

I hate these articles. I didn't do anything wrong. They are not written to provide a guilt trip for those of us lucky enough to get cancer but they do. I belong to about a billion cancer message boards. On one recently, there was a discussion on how everyone thought they got their cancer. There were lots of ideas - over use of cell phone, living near a volcano, living on military bases, etc. My reply is I have given up trying to figure this one out and we cannot beat ourselves up for something we might or might not have done - its in the past and unless we have a way to undo things, its not going to happen.

I really don't do guilt trips related to the cause of my cancer. I don't smoke any more but if you asked a 'so-called' cancer specialist I am sure they would be happy to tell me I am eating the wrong things, not getting enough exercise, breathing contaminated air, using plastic, driving a car, playing in traffic, stressed out, have a pet, never had children, am too fat, or any number of things. I refuse to worry about this any more.

Here's the bottom line. I have had cancer twice. We know there are things that can raise one's risk of cancer but do not guarantee you getting cancer. I may have done them but billions of other people have done them as well and didn't get cancer. So unless you can tell me, what exactly caused my cancer, I will politely tell you now to please shut up. If you don't I may get crabby.

Wednesday, January 4, 2012

There's no 'I' in team

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

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

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

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

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

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

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

Tuesday, January 3, 2012

Hospital based treatment

As I have said before hospitals are no place to get any rest. They are also great places to be exposed to germs. Some people think insurance companies kick people out too soon after surgeries but there is something to be said for going home and getting a good night's sleep in your own germ free bed if at all possible.

But there is also the concept of hospital based care vs community based care. We used to have surgery or require extended care and be automatically admitted to the hospital. In the UK, there is now a movement to community based care - basically minimizing hospital stays and treating people in their homes or at local doctor offices. This is seen as a mandatory cost cutting move.

I have experienced this as well as both of my parents. After surgery which left me with a lovely (really yucky) surgical drain, I had a visiting nurse until the drain was removed. The same with my parents, surgery to rehab to home care with a visiting nurse and therapist. Even staying in rehab is not as comfortable as one's own home - shared rooms, shared germs, etc. The only benefit to rehab is getting pain under control and getting more physical therapy - multiple sessions in a day. Visiting nurses and therapists can provide a good level of care in the privacy and comfort of your own home.

There have been times for other surgeries where I have been stuck in a germy, loud hospital room for as much as a week - waiting to get a post surgical infection under control. I am always very happy to go home from the hospital and spend as little time there as possible. In fact often by the time I am ready to leave, I am ready to check myself out before they are ready to discharge me. I think I can be a really bad patient sometimes.

Monday, January 2, 2012

My resolutions

I have been thinking and finally have come up with a few resolutions for 2012. They say that 80% of New Year's resolutions fail. So why should I bother? Because I want to. You will also note that I am not biting off more than I can handle either. So here they are:
  1. I resolve not to have cancer in 2012. See that's easy. I can say that. I've had it twice so now its someone else's turn. Maybe I am a bit selfish but I do feel its not my turn this year.
  2. I resolve not to develop any other new medical ailment in 2012. My life for the last six years has been a series of medical crap.
    • 2011 - fall, strained tendons in knee, knee injections, tennis elbow, etc.
    • 2010 - I can't remember what was new but I had lots of PT, doctor appointments, lymphedema stuff, and back injections.
    • 2009 - sprained ankle, developed back problems, became best friends with the pain clinic, etc
    • 2008 - gall bladder surgery
    • 2007 - breast cancer, chemotherapy, radiation, three surgeries, became best friends with the cancer clinic
    • 2006 - fibroids and hysterectomy
  3. I resolve to get serious about this deflabbification project. I have started losing weight since I joined a new gym last February. This year I have signed up for a weight loss challenge that the gym. For 8 weeks, they split up those who sign up into 3 teams. We get weighed weekly and the winning team which loses the biggest percentage of weight lost wins something - I can't remember what it is but its really just to motivate me. I also can sign up for 8 30 minute personal trainer sessions for the eight weeks for a really cheap price. If I am on the deflabbification lifestyle, by default, my husband is as well. So I have double-dared my husband - which ever of us who loses the biggest percent in weight by the end of March has to buy the other a nice something. I also plan on not going on a diet but changing our eating habits.
  4. I resolve to be a perky cheerful person all of the time. Those of you who know me may question this one but when life gives you lemons,you need to make lemonade, vodka is optional. But when I am on the medical roller coaster with some back pain as well, I tend not to be as perky as I may seem. But I am working on this. Besides, when I am perky, it often annoys my husband which is an added benefit.
So those are my resolutions. I think they are doable. I am not promising to lose 20 pounds (which would be nice) but to take control over the flabbification. More medical ailments are just out of the question out at this point. I have put aside world peace, tolerance, and political niceness for now. This year I will focus on me. I am catering to my inner two year old - mine, mine, mine!

Sunday, January 1, 2012

Preventing medical errors

A big part of being a patient is working with your medical team to help prevent errors. As a patient, your part is to speak up and ask questions, tell about how you feel, and participate in your care. The Joint Commission (which is a big health care quiality organizaiton which I had never heard of) has developed a program called SpeakUp with a flyer that anyone who is  amedical patient should read. You can get a copy of it here or read the content below. I couldn't have said it better myself:

Speak up if you have questions or concerns. If you still do not understand, ask again. It is your body and you have a right to know.
  • Your health is very important. Do not worry about beingand you have a right to know.
  • Your health is very important. Do not worry about being embarrassed if you do not understand something that your doctor, nurse or other health care professional tells you. If you do not understand because you speak another language,ask for someone who speaks your language.You have the right to get free help from someone who speaks your language.
  • Do not be afraid to ask about safety. If you are having surgery, ask the doctor to mark the area that is to be operated on.
  • Do not be afraid to tell the nurse or the doctor if you think you are about to get the wrong medicine.
  • Do not be afraid to tell a health care professional if you think he or she has confused you with another patient.
Pay attention to the care you get. Always make sure you are getting the right treatments and medicines by the right health care professionals. Do not assume anything.
  • Tell your nurse or doctor if something does not seem right.
  • Expect health care workers to introduce themselves. Look for their identification (ID) badges. A new mother should know the person who she hands her baby to. If you do not know who the person is, ask for their ID.
  • Notice whether your caregivers have washed their hands. Hand washing is the most important way to prevent infections. Do not be afraid to remind a doctor or nurse to do this.
  • Know what time of the day you normally get medicine. If you do not get it, tell your nurse or doctor.
  • Make sure your nurse or doctor checks your ID. Make sure he or she checks your wristband and asks your name before he or she gives you your medicine or treatment. Educate yourself about your illness. Learn about the medical tests you get, and your treatment plan.
  • Ask your doctor about the special training and experience that qualifies him or her to treat your illness.
The goal of the Speak Up™ program is to help patients and their advocates become more informed and involved in their health care.
  • Look for information about your condition. Good places to get that information are from your doctor, your library, support groups, and respected Web sites, like the Centers for Disease Control & Prevention (CDC) Web site.
  • Write down important facts your doctor tells you. Ask your doctor if he or she has any written information you can keep.
  • Read all medical forms and make sure you understand them before you sign anything. If you do not understand, ask your doctor or nurse to explain them.
  • Make sure you know how to work any equipment that is being used in your care. If you use oxygen at home, do not smoke or let anyone smoke near you.
Ask a trusted family member or friend to be your advocate (advisor or supporter).
  • Your advocate can ask questions that you may not think about when you are stressed. Your advocate can also help remember answers to questions you have asked or write down information being discussed.
  • Ask this person to stay with you, even overnight, when you are hospitalized. You may be able to rest better. Your advocate can help make sure you get the correct medicines and treatments.
  • Your advocate should be someone who can communicate well and work cooperatively with medical staff for your best care.
  • Make sure this person understands the kind of care you want and respects your decisions.
  • Your advocate should know who your health care proxy decision-maker is; a proxy is a person you choose to sign a legal document so he or she can make decisions about your health care when you are unable to make your own decisions. Your advocate may also be your proxy under these circumstances. They should know this ahead of time.
  • Go over the consents for treatment with your advocate and health care proxy, if your proxy is available, before you sign them. Make sure you all understand exactly what you are about to agree to.
  • Make sure your advocate understands the type of care you will need when you get home. Your advocate should know what to look for if your condition is getting worse. He or she should also know who to call for help. 
Know what medicines you take and why you take them. Medicine errors are the most common health care mistakes.
  • Ask about why you should take the medicine. Ask for written information about it, including its brand and generic names. Also ask about the side effects of all medicines.
  • If you do not recognize a medicine, double-check that it is for you. Ask about medicines that you are to take by mouth before you swallow them. Read the contents of the bags of intravenous (IV) fluids. If you are not well enough to do this, ask your advocate to do it.
  • If you are given an IV, ask the nurse how long it should take for the liquid to run out. Tell the nurse if it does not seem to be dripping right (too fast or too slow).
  • Whenever you get a new medicine, tell your doctors and nurses about allergies you have, or negative reactions you have had to other medicines.
  • If you are taking a lot of medicines, be sure to ask your doctor or pharmacist if it is safe to take those medicines together. Do the same thing with vitamins, herbs and over-the-counter drugs.
  • Make sure you can read the handwriting on prescriptions written by your doctor. If you cannot read it, the pharmacist may not be able to either. Ask somebody at the doctor’s office to print the prescription, if necessary.
  • Carry an up-to-date list of the medicines you are taking in your purse or wallet. Write down how much you take and when you take it. Go over the list with your doctor and other caregivers.
Use a hospital, clinic, surgery center, or other type of health care organization that has been carefully checked out.
For example, The Joint Commission visits hospitals to see if they are meeting The Joint Commission’s quality standards.
  • Ask about the health care organization’s experience in taking care of people with your type of illness. How often do they perform the procedure you need? What special care do they provide to help patients get well?
  • If you have more than one hospital to choose from, ask your doctor which one has the best care for your condition.
  • Before you leave the hospital or other facility, ask about follow-up care and make sure that you understand all the instructions.
  • Go to Quality Check at www.qualitycheck.org to find out whether your hospital or other health care organization is “accredited.” Accredited means that the hospital or health care organization works by rules that make sure that patient safety and quality standards are followed. 
Participate in all decisions about your treatment. You are the center of the health care team.
  • You and your doctor should agree on exactly what will be done during each step of your care.
  • Know who will be taking care of you. Know how long the treatment will last. Know how you should feel.
  • Understand that more tests or medications may not always be better for you. Ask your doctor how a new test or medication will help.
  • Keep copies of your medical records from previous hospital stays and share them with your health care team. This will give them better information about your health history.
  • Do not be afraid to ask for a second opinion. If you are unsure about the best treatment for your illness, talk with one or two additional doctors. The more information you have about all the kinds of treatment available to you, the better you will feel about the decisions made.
  • Ask your doctor to recommend a support group you can join to help deal with your condition. People in these groups may help you prepare for the days and weeks ahead. They may be able to tell you what to expect and what worked best for them.
  • Talk to your doctor and your family about your wishes regarding resuscitation and other life-saving actions.