Caroline's Breast Cancer Blog

Doing what you say

2012-02-11T10:32:00.001-05:00

I know everyone is jumping up and down to rant, rage, and rave about Komen these days. I am pretty neutral, leaning to reluctant acceptance, on them. My breast cancer diagnosis had nothing to do with these feelings. Before it I was probably less informed about what they do but still not overwhelmingly impressed. I think they deserve credit for lots of things they have done:

- Breast cancer is no longer a dreaded, whispered about disease, largely through their efforts.
- They have raised awareness of breast cancer to previously unheard of levels
- They fund a lot of programs on breast cancer education, screening, and awareness
- They provide a lot of information on coping with a breast cancer diagnosis, treatment, and life after it

On the other hand, they have not:
- They have not discovered a cure for breast cancer through their efforts (not that anyone else has either) - actually currently only 15% of their funding goes to breast cancer research anyway
- Their name is now misleading as only 15% of their funding goes to breast cancer research - see above
- They do not 'play well with others' based on their history of lawsuits and partnerships.
- They have pinkified everything under the sun.

I will give credit where credit is due. They have done a lot. But with this most recent explosion of bad press and scrutiny on the organization, employees, and their financial books, they seem to be crumpling and their support seems to be fading.

My biggest problem with them is that they do not do what they say. While I think its wonderful that they support all this awareness and education but in their name they say they are for the cure for breast cancer but that's not where their money goes. If they continue to do what they are doing they should be called the 'Foundation For Awareness of, Lawsuits About Our Name, and a Little Bit of Research for the Cure for Breast Cancer'. Then they would be doing what they say.

Being a patient

2012-02-10T06:56:00.000-05:00

I have given myself the title of 'Professional Patient' which I believe I deserve because I spend so much of my life going for some kind of medical treatment. I was faced with this sad fact yesterday when I went for a medical adventure for my back.

All my back medical adventures and all my surgeries check in at the same area so you can guess I am very familiar with the process. Stop and check in at the main desk upstairs - which is very silly as all they ever do is check your name off on a piece of paper and then tab through a million fields on the computer, never asking a single question. You just stand there (which is not a piece of cake with my back these days), then they take their ruler and check you off on the piece of paper and draw a line underneath your name. Then they turn to the computer and tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, you get the point. Finally my back hurts and they say 'you're all set, go down to the second floor, and go through the blue doors and check in there'. I don't wait for them to say more than the first three words, before leaving. I know where I am going. I always take the stairs down as there usually is a wait for the elevator but yesterday the doors magically opened on a down elevator just as I was walking by it.

I go down to the second floor and check in at the desk there, which means writing my name on a piece of paper and checking off that I am in pain, yes I have someone to take me home, there is no chance I am pregnant, and sit down in a comfy chair. A nurse comes out and gets me. Yesterday I went in the right door - that's for people who have to change into the 'lovely' hospital gown, robe and little booties (apparently these are meant to be ugly so no one will steal them). If you go in the left door, it means you get to keep on your regular clothes. After changing, you sit down in another chair - except yesterday they were ready for me before I was ready for them so I made them wait for a minute.

The nurse said to me 'Do I know you from some where?' 'Um, no, I'm just here a lot. This is my fourth visit since October.' 'Are you sure? Do you work here?' 'No. I just visit a lot.' That was just the first nurse, then there is the nurse who takes you to the procedure room and back out - she's nice with the long Greek last name (she's not Greek, her husband is), and the other nurse who was in the pre-op area. I know them all. Now they recognize me too.

While I was waiting my turn for a little medical fun, an employee tripped and fell right behind me. I didn't see the fall but the Greek named nurse did. All I can say if you fall, be sure to fall in a hospital as five nurses came running with gauze for blood, ice packs, a wheel chair etc. They insisted the fallen employee take a seat in the chair across from me - I knew her too. She is the woman who is the friend of one of the women from my support group and preps women for the breast biopsies and ultrasounds. She's very nice and funny. And was really mad at herself for the big to do over her little fall - but was happy for the ice on her hand and chin.

That was just yesterday. I recognize a lot of the others - the nurse in endocrinology who clearly came from some former Eastern European republic as she has the accent and a very cranky attitude. Or the nurses up in pain management are very nice - the one who schedules the 'medical adventures' is very accommodating as well as good at finessing the system as needed. The check-in desk for orthopedics has very nice fake flowers that I always admire while waiting in line.

The hospital has nicely added flat screen TVs to many waiting rooms in recent years so we are no longer stuck with 'do I flip through this boring magazine or try to avoid looking at other people moments' we can gaze stupidly at the 'boob tube'. There is a piano in the lobby and occasionally there is someone there playing it as well. I have preferred parking areas in the giant garage. I hate that dilemma - where is the damn car? I try to park consistently so I can find it again without overtaxing my tiny brain.

The cafeteria has been upgraded and they nicely label which ones are heart healthy and provide many calorie and fat gram counts. But they also sell cookies and chips if you have a 'bad' appointment and need some sustenance. The best cell phone reception is in the cafeteria by the windows. The reception in the lobby borders between awful and non-existent. And there is free wi-fi everywhere.

I think I visit there too much. I recently had a month of no visits. That is now over. I go back for another round of medical fun on Monday. I can't wait.

Do you want the truth?

2012-02-09T07:01:00.002-05:00

Do you want the truth from your doctor? Of course we want to hear the truth. BUT. Are we really sure about that? I mean we want our friend to honestly tell us not to buy that dress because it makes you look fat. Or we want the home improvement contractor to give the honest date they will be done with the renovations.

But sometimes a little blurring of the facts can be a welcome respite from reality. The truth may need to come out at appropriate times. If there is an 95% survival rate for a medical ailment, do you really want to know that ahead of time? Or do you want to be told that most people come through it fine? If you are told that number of 95% are you going to fixate on the 5% that don't make it? If you are diagnosed with cancer and the doctor starts running on and on about 5 year survival rates and tells you its only 87%, do you really want to hear that number? Or do you want the doctor to say things like 'we are optimistic about your treatment and most people do quite well with it' Eventually you will find out the survival rates and can absorb them.

I know one woman with her cancer diagnosis, she told her doctor she didn't want to know any numbers - not her cancer stage, or number of positive lymph nodes, or anything. She just wanted to focus on treatment. Eventually she did find out all her stats but it was on her time.

A big hot button in the news this morning is that doctors are not completely honest with their patients. There are two parts to this issue - one in telling patients about prognosis and expected outcomes and the other with revealing their alliances and payments with drug and medical device manufacturers.

For the first issue, I think I want some information but only want hard details and numbers at a slower rate. At the end of my breast cancer treatment, I finally screwed up every brave nerve I had and asked my oncologist what he thought of my prognosis. I would not have been ready to hear it earlier, not that it was bad but I ~~wanted~~ needed to go through treatment with as much optimism as I could attain. Although doctors may not be as forth coming about outcomes and expectations up front, they also need to retain some compassion and explain as much as the patient wants. If you over whelm a patient with a poor outcome, you can send them spiraling into depression and despair. There needs to be a balance.

But if there has been an error in my care, I want to know about it. When I had my gall bladder out, in post op there was a giant bruise spreading across my stomach. From the nurse's comments I knew that was unusual and it was the largest pain area during recovery. It appears the surgeon was a bit heavy handed at some point - even though they were four tiny incisions, the tools used my have been pretty forceful to leave a bruise. But did he ever mention it to me when checking on me? No. Did I bring it up? No because I was in the post anesthesia haze for a while and my brain didn't function properly. As a result, I am fine but will probably avoid having the same surgeon again.

For the second issue of revealing affiliations and payments with medical manufacturers I think my stance is pretty clear: treat me based on what I need not on the weight of the doctor's wallet.

Most of the time honesty is the best policy but sometimes a little fudging can be appreciated.

Penalizing patients

2012-02-08T06:13:00.000-05:00

This obviously exposes a glaring loophole in how insurance companies plan their premium rates. After having low increases this year, the insurance companies now say that rates will go up substantially.

"Even as Massachusetts business and government leaders celebrate the most modest premium rate hikes in years for small employers and individuals, speakers at a health insurance seminar here yesterday warned that the main trend restraining bigger increases - fewer people seeking health care in the past year - already may be changing.

“We definitely are starting to see some uptick,’’ said Martha R. Temple, president of the New England market for insurance giant Aetna Inc. “The economy is turning up. And we think we may see, sometime in 2012 and 2013, the utilization tick up to historic levels.’’ That could mean a return to the double-digit annual increases of the past decade.

Massachusetts insurers have been able to limit base rate premium increases - they average 1.8 percent for the period starting April 1 in the so-called small-group market - in part because the weak economy caused many people who lost jobs or were afraid of losing them to delay elective procedures, speakers at the conference said. But as the economy strengthens, they expect more people will return to doctors and hospitals, driving up spending on medical care."

"Insurers said they were able to limit base rate premium hikes partly because they had planned for higher health care use and also because they were starting from a larger premium base after years of hefty increases. Many employers pay more than the base rate because of additional factors such as their location or the age of their workforce."

If I think about this with my non-business, non-medical brain, I would assume if more people are insured that means there are more people paying premiums - not all uninsured people were sick people, they just didn't want or couldn't afford insurance or health insurance was not available to them. You would think this would help the insurance companies - they may be insuring more people and paying more claims but more people would be helping to pay for them.

Also, I would think that insurance companies would know how to manage their costs to account for the fact that people will use their health insurance when they have it. Premiums should not go up because people use their insurance. This is like the company in California, that I blogged about a few years ago, who wanted to increase premiums by as much as 70% because they were insuring sick people who used their health insurance because the healthy people who didn't go to the doctor had left the plan because the rates were so high.

This is penalizing the patients for using their health insurance and going to the doctor. I'm sorry but I think insurance companies need to rethink how they determine premiums. This is the same if you file a claim with your home owners or car insurance and then your rates go up. Insurance is there to help you in case you need it. It is not working if you are reimbursed or covered for something and then your rates go up - meaning you pay the insurance company back for everything they saved for you initially over an extended period of time.

This is a broken system where insurance companies are winning and the patients are losing.

Statistics dont tell the whole story

2012-02-07T06:07:00.001-05:00

I have been very happy and comfortable with the quality of my health care. I live near Boston the home of many world class hospitals and the quality of care available in the area is very good. Or so I thought. HealthGrades.com just released their latest list of top cities for health care. So I wanted to see where Boston was on the list. Its not. Neither is New York City.

I was surprised to say the least.Then I started thinking - a very dangerous proposition at times. This is a classic example of how statistics can be misleading. These numbers are looking at the level of care across an entire metropolitan area. While this includes the leading hospitals, it also includes small and large medical centers that may be underfunded or serving a sicker population who are going to have statistically worse than expected outcomes due to their overall health.

So I went through and looked up where I am treated and feel slightly better. Then just for the hell of it I looked up Dana Farber. They have all sorts of physicians listed, many of them have no ratings. And they had no surgical procedures listed. Hmmm.... So what is their rating? I don't know.

More advice on statistics. Ignore them.

Hospitals making profits on their patients

2012-02-06T06:29:00.000-05:00

We assume the hospitals that treat us are primarily concerned with what is best for the patients. Um, yeah, sure. Federal Investigators are examining single night hospital stays from 2000-2005 at Beth Israel Hospital in Boston to see if Medicare was being billed for unnecessary stays.

One side of the issue is that are patients being kept overnight for observation solely so that the hospital can reap additional income. We try to believe that hospitals are always looking at the patient's best interest but they are businesses with a bottom line. So maybe they do keep patients in when they shouldn't so they can get the additional income. Which I think is crazy - I mean nurses and doctors already rightly state they are often overworked - so why admit patients when they would do just as well at home in their own beds.

The other side of the issue is that are insurance requirements too strict and too quick to send people home when they would benefit from a night of observation?

BI is not the only hospital to have this kind of inquiry and others have resulted in fines and settlements. It is all part of the effort to reduce medical costs. If a hospital thinks they can further overwork their employees and their patients kept unnecessarily overnight just to raise their bottom line, they are not looking out for their patients.

Exercise, Schmexercise

2012-02-05T08:18:00.000-05:00

Go exercise they tell us. (Who are 'they' anyway?) We say we will but do we ever? Have you seen the commercial on TV about the couple who makes the lamest excuses not to go to the gym? I can't even remember what its for but I just remember some really lame excuses. I have used some myself - 'I don't feel like it', 'I have to clean the cat box', 'I went to the gym yesterday', and 'I need to catch up on my DVR watching'. If you want more, I'm happy to come up with them.

Truth be told, I used to go for a daily walk but I wasn't deflabbing properly so I joined a gym which I never went to because the machines were complicated and they made my back hurt. So then I joined a fancy gym with trainers and many dilapidated people like me. They gave me an exercise plan which accounts for my dilapidation. I have since learned that I can only go to the gym every other day. If I attempt to go two days in a row, my body revolts and I end up horizontal as I recover. My current solution is to go to the gym Monday, Wednesday, and Friday and go for a walk on one of the weekend days. I did not go yesterday. This means I need to go for a walk today even though its colder out today. Maybe I'll be whiney as I go for my walk.

Exercise is a good thing. It doesn't have to be as complicated or as expensive as going to the gym - you have two feet so use them. I can go on and on about exercise at any time but here are some real facts from professional medical people who actually aren't making things up:

Research has shown that exercise can help:

keep your body fat at a healthy percentage
keep your weight at a healthy level
lower your risk of many diseases, including breast cancer
reduce the risk of breast cancer coming back if you’ve been diagnosed
keep your bones strong and ward off osteoporosis
improve your mood
improve sleep quality

That little line about lowering your risk of cancer is a subtle hint. But I am proof you can get cancer even if you exercise. So all this tells us is 'they' (whoever they are) don't know crap.

Let's take the politics out of health care

2012-02-04T07:29:00.000-05:00

I know this is a novel idea but I really think we should take the politics out of health care. When we are worried about our health, we go to the doctor. Do we ask our doctor which political party they belong to? No because it is not relevant. Do health ailments discriminate against certain political stances? No. If I could become healthy by switching political parties, I would be happy to.

So why has health and health care become a political issue? The recent Komen/Planned Parenthood brouhaha has brought this issue to the forefront. No health issue and access to health care should have its availability compromised based on politics. National health reform is also tainted by this as well. The purpose of national health care reform is to make health care accessible and affordable to all. That's it. The end result should be saved lives. I don't have problems with that one. People who are alive are happy people.

But why do politics need to get involved with health care? In the case of the Komen/Planned Parenthood PR disaster, accusations are flying regarding people's stance on abortion which is a political hot button. From their website:

"For more than 90 years, Planned Parenthood has promoted a commonsense approach to women’s health and well-being, based on respect for each individual’s right to make informed, independent decisions about health, sex, and family planning."

Only 3% of their services include abortion which is THE issue, that means that 97% of their services are not related to abortion. (I personally don't care what you think about abortion because that is not the issue here.) My opinion is that this is about accessible women's health care. Women of all political beliefs, races, creeds, religions, heights, weights, and ages need access to health care. If they can't afford it, they need to have resources to help them. By politicizing the access to health care, women will be denied it. How much sense does that make? It doesn't.

So let's get the politics out of health care.

I have no inspiration this morning

2012-02-03T06:32:00.001-05:00

I have put myself in to a corner. I always blog every morning and feel if I don't blog people will wonder what happened to me. I very rarely skip a day - only when I am far, far away from internet access - which still can happen. Last time that happened I had to leave the country. But now I feel guilt if I miss a day - am I letting down my loyal readers - who ever you may be? I know people read my blog (because I can see statistics that tell me how many of you there are each day) but I am not sure I know who most of you are.

I usually keep a mental list of topics to write about which is usually based on current tabs open in my browser. This monring I have three tabs waiting for me to write about - how the farm bill will affect consumers, the latest issue of Artemis from Johns Hopkins which is always good for some technical medical stuff, and an article where I am trying to dig up sympathy for the drug companies who claim they will have a bad year in 2012. I am just not motivated.

Maybe this is because I am over scheduled today. I hate it when I do this to myself but I have four appointments today which involve driving from one to the next. I also need to go to the grocery store, the drug store, and return something at HomeGoods. I really wanted to stop by the new consignment store I heard about. And I need to do some work today. Oh and my back hurts.

Otherwise, I am doing okay these days. I don't think I have blogged about my health recently. My biggest problem is my back these days (and that pesky cancer crap). I am having a radiofrequency ablation of nerves in my spine (heated needles stuck into my back while I am thankfully sedated) next Thursday which should help. Then I want to talk to my doctor about my pain meds which don't seem to be helping much. I do have a six month follow up and ultrasound with my endocrinologist coming up as well as a six month visit with my oncologist. I am just ignoring them until they happen. That is my superior 'fight or flight' mentality that keeps me sane.

But life goes on. I bit the bullet and upgraded to the new Facebook timeline without having a nervous breakdown. I am now ignoring the Komen/Planned Parenthood controversy as I blogged about it yesterday and got it out of my system. I believe there is a presidential campaign going on which I am ignoring. I also think there is a big football game this weekend. We will have some special snacks, I will read a book during the game, and watch the commercials until I get bored - which could only be in the first quarter. I have never figured out football and don't think I ever will but I am happy to explain the fine details of figuring skating and most of its new scoring system if you ever have a question.

That is my uninspired blog post. We will return to regular programming tomorrow (I hope).

Following a controversy

2012-02-02T06:39:00.001-05:00

I am always interested in controversies. Anything that is controversial makes news - which ~~sometimes~~ often gets over-hyped by the media and ends up boring us to death because there is too much. What I find most interesting about controversy is how the controversial behavior is handled by the two sides. There is always controversy - we can't escape it. If we do something wrong, do we apologize or do we run away? An apology or explanation is a good way to handle something, running away, avoiding the issue, or worse a bad apology is a bad way to handle it. This applies in every part of life - there is no getting around it.

The latest controversy in the news is that the Komen foundation has announced they will no longer fund Planned Parenthood. Actually what they did is decide not to renew a grant. If you read the news articles that were first made available yesterday:

"Susan G. Komen for the Cure, a leader in fundraising for breast cancer research and famous worldwide for its iconic pink ribbon, said Tuesday that it was halting all partnerships with Planned Parenthood affiliates because of recently adopted criteria that forbid it from funding any organization under government investigation.

In September, Rep. Cliff Stearns (R-Fla.) launched an inquiry to determine whether Planned Parenthood uses public money to fund abortions. Planned Parenthood receives federal money but cannot use it to provide abortions.

Komen has a long history of providing funding to various Planned Parenthood affiliates for such services as manual breast exams and referrals for mammograms and biopsies to check suspicious lumps for cancer. Although that money is not used for abortions, the Komen Foundation may have yielded to demands from antiabortion groups to sever its ties to Planned Parenthood.

"We had the sense this was coming and that they were under pressure," said Sue Dunlap, chief executive of Planned Parenthood Los Angeles. "I find this really disappointing. I think when women's health is more of a political conversation than a conversation about healthcare and taking care of people, then we've gone too far."

Officials for Planned Parenthood Federation of America said they learned of Komen's new stance on funding late last year and asked the Komen board of directors for a meeting to resolve any issues or questions related to funding. The meeting did not take place, said Cecile Richards, the federation's president.

"We are alarmed and saddened that the Susan G. Komen for the Cure Foundation appears to have succumbed to political pressure," Richards said in a statement. "Our greatest desire is for Komen to reconsider this policy and recommit to the partnership on which so many women count."

Over the last five years, Planned Parenthood has provided about 4 million breast exams and referrals for 70,000 mammograms nationwide. Funding from Komen covers about 170,000 of the breast exams and 6,400 mammogram referrals, Richards said. Although mammograms and biopsies are referred out, Planned Parenthood doctors manage their patients' cases."

This sparked a sense of outrage all over - this was the hot topic of the internet yesterday - it was more popular than Justin Beiber, the presidential election, and the Facebook IPO combined. The outrage centered on the potential political slant of the decision.

The Komen foundation itself was decidedly silent on the topic itself which was to its detriment. I call this poor handling. The silence allowed people to polarize and express their fury again and again.

This morning I received a link to an official video of Nancy Brinker explaining their position and why they made the decision. I call it a non-answer:

She does not address the issues of the controversy. She states they are staying true to their cause and the promise to her sister. She talks about changing their grant policies. She does not talk about the statement from the Komen foundation about not funding organizations under investigation. She could be talking about any decision, not this one.

A non profit owes it to the donors to explain their decisions. People won't donate to places which upset them. They donate to places which they feel support their beliefs. It is hard for a donor to believe in an organization which doesn't explain their decision.

And now we have reports that Planned Parenthood received a record $650,000 in donations in 24 hours - which basically replaces the Komen grant money they will no longer receive.

This is a controversy which I believe was poorly handled by Komen. The proof is in the money.

But I am sure the media will beat this to death for the next six months until we are bored. We need a new scandal fast so this one will not be the controversy which would not go away.

Thank you for making me feel insecure about my treatment

2012-02-01T06:49:00.001-05:00

I hate these articles. This one discusses the lack of guidelines for what kind of clean margins are needed for whether a re-excision is needed after a lumpectomy. First let me say, thank you for upsetting potentially hundreds of thousands of women who had a lumpectomy and may or may not have had a needed second surgery or had a second surgery unnecessarily. This isn't something that really can be undone. If a second surgery was needed and wasn't done, there is probably nothing that can be done now. If a second surgery wasn't needed but was done, you really can't undo surgery.

Second, the general media is not the place to discuss undetermined medical guidelines. These should be discussed by the people who practice medicine, not by the patients. As a patient, we assume that we are given proper medical care. We assume our doctors follow guidelines and protocols. We don't want to hear about the lack of guidelines that may have led to improper care.

Also, I assume that the hospital where I am treated has its own guidelines and protocols something that is not discussed in this article at all. It makes us patients feel like we may have been mistreated. I know, as a professional patient and not as a medical professional, that the hospital I am treated at has established guidelines for what is the current protocol for chemotherapy or preparation for some lovely medical adventure. So is this article saying there are no guidelines followed anywhere?

So I am so 'not' comfy with my medical treatment after reading this. I will now go have some breakfast and attempt to think positive thoughts about something else.

Getting rid of toxins

2012-01-31T06:40:00.003-05:00

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.

Insurance costs

2012-01-30T06:42:00.000-05:00

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?

Its just a sunburn - hah!

2012-01-29T08:18:00.001-05:00

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?

Numbers and research

2012-01-28T08:02:00.000-05:00

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.

Blah, blah, blah

2012-01-27T07:03:00.005-05:00

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.

That Avastin Debate

2012-01-26T06:40:00.000-05:00

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.

As long as they don't nag

2012-01-25T07:03:00.000-05:00

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.

Pink Ribbons Inc

2012-01-24T06:29:00.003-05:00

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.

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

2012-01-23T06:22:00.000-05:00

"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.

You won't know until you try it

2012-01-22T07:46:00.001-05:00

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.

Positive Pets

2012-01-21T06:39:00.000-05:00

"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.

She can talk about it on her own terms

2012-01-20T06:15:00.001-05:00

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.

A picture paints a thousand words

2012-01-19T06:14:00.002-05:00

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.

Research

2012-01-18T06:19:00.002-05:00

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!

Doctors and manufacturing companies

2012-01-17T06:25:00.000-05:00

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.

Quality of life

2012-01-16T07:55:00.000-05:00

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.

Bringing the Mountain

2012-01-15T08:32:00.000-05:00

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.

This doesn't make me feel comfy

2012-01-14T08:17:00.001-05:00

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.

A bad start

2012-01-13T06:50:00.002-05:00

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.

Numbers in the wrong direction

2012-01-12T06:48:00.000-05:00

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.

A blip or a sign of the times

2012-01-11T07:18:00.000-05:00

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.

That scary term - managed care

2012-01-10T06:33:00.000-05:00

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.

The name. Its now called Accountable Care.
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.

Eating well vs. eating right

2012-01-09T06:21:00.001-05:00

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.]

Fixated on our health

2012-01-08T08:15:00.000-05:00

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.

Breast cancer vaccine?

2012-01-07T07:15:00.000-05:00

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.

Finding cancer information

2012-01-06T07:40:00.000-05:00

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.

Sorry, I don't do guilt trips

2012-01-05T06:37:00.000-05:00

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.

There's no 'I' in team

2012-01-04T06:16:00.004-05:00

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.

Hospital based treatment

2012-01-03T06:27:00.003-05:00

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.

My resolutions

2012-01-02T08:34:00.002-05:00

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:

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.
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

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.
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!

Preventing medical errors

2012-01-01T07:59:00.001-05:00

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.

2011-12-31T06:54:00.001-05:00

On January 1, I made my wish list for the year. We can just say I didn't get what I wanted. Maybe I was overly optimistic but I only wanted a healthy year, a year free of political mudslinging, a year of international stability and a year of tolerance. Not much.

Well where did we get to? The political mudslinging is getting ridiculous and as a note to anyone who aspires to get into politics - I will just say if you ever want to cheat on your spouse or tax return or change your mind about anything, please be sure to have a good reason to do so. On the international stability front, I feel the Doomsday clock (do we even still have that) ticking away: North Korea leadership, Greek and Italian economics, Iraq/Iran/Afghanistan/Libya/Egypt/a few more countries and their uprisings/protests/change of leadership. And the list goes on and on and on.

Tolerance? Well we certainly don't have that since we have political mudslinging and international instability. I do however see some progress in that. I am not saying its perfect but I feel progress. Talk to someone in a younger generation in the US and most of them are color blind - they don't care about the skin color of their friends and family members. Most have always gone to an integrated school where more than one language was spoken by their friends' families. I see progress in gay rights - it has its ups and downs but is staying at the forefront instead of being pushed off to the side so things are changing. We still have the stupid Westboro Baptist Church and other bigots around to spread hate and probably always will have to put up with other people's narrow-mindedness. But I do feel some optimism here.

On my health, well that's another story. I had another record number of doctor appointments this year - for some reason I keep count (well really its because Excel helpfully numbers the lines in the spreadsheet where I keep track of medical expenses so they can be deducted from our taxes). On one hand I have not had any kind of surgery for over 3 years (unless you count minor back procedures), but on the other I have body parts which are being problematic and if they don't get back in line soon that may end. I also am not being treated for anything too significant - unless you count post cancer as significant which I try to ignore. My back is being decidedly uncooperative these days which gives me lots of pain which sometimes leads to crabbiness and other problems. I did join a new gym in 2011 and am working on getting in better shape. Next step is to actually lose some more weight. I have also tried acupuncture for pain and other issues and will continue to do so.

So at the end of yet another year that didn't go as planned, I will have to come up with some new hopes for the future. Perhaps I will focus on smaller things like fitting into my size 8 pants again.

Health care as medicine not a business

2011-12-30T06:33:00.000-05:00

Here's a concept - let's have health care focus on medicine and curing patients and not as a business focused on the bottom line. Before you jump up and down and say that health care is a business because there are fees and payments and people to pay and services to hire, blah, blah, blah. Yes that is true but my point (and I always have to have a point) is that it should not focus on the business side but on the patient side.

A hospital or medical center or a single doctor's office has to run as a business but it really should put the priorities of the patients first. Did the doctor become a doctor to be rich and drive a Mercedes or did the doctor want to cure people? I think that people choose their careers with an eye to doing something that gives them some satisfaction as well as pay the bills. I mean if you want to get rich and drive a Mercedes there are ways to do that without cutting sections out of people and peering inside their bodies. You can become a stock broker or something else.

Hospitals are medical centers are designed to be places where patients receive care and they should be run that way. What is in the best interest of the patient and their care? If a doctor needs another test to figure out what is wrong with a patient, why can't they order it? Why does it have to be approved by an insurance company? If a doctor wants to prescribe a drug for a patient, why can't they choose the drug they believe is the right one? Not the one that the pharmaceutical company is promoting this week?

All of this is true for others in the medical profession - technicians, nurses, interns, therapists, etc. Medicine is about the patient, not about the bottom line.

If we reread the Hippocratic Oath, which is taken by doctors and other medical professionals, I do not see any reference to insurance companies, manufacturers, red tape, hospital administrators, pre-approvals, etc.

I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

That pesky mammogram controversy

2011-12-29T06:56:00.001-05:00

Here is another article telling us about the benefits of mammograms. It says that after following women for 15 years, 86% of the ones whose breast cancer was discovered by mammography were still alive vs. 66% of the women whose cancer was found through other methods.

How many times do we need to say this? Mammography is beneficial and insurance companies and government insurance agencies who only want to cover mammograms after age 50 or only every few years instead of annually, are just being cheap and sacrificing women's lives.

Allow me to simplify:
- there is a test to screen for a deadly disease that occurs more and more frequently after age 40
- women who get the test are more likely to survive the disease as they are diagnosed earlier
- women who get the test are more likely to have lower medical care costs as they are diagnosed earlier
- the test saves lives and costs

And where is the problem?

Balancing progress and costs

2011-12-28T06:10:00.003-05:00

We always need to balance costs vs progress. When does it make sense to repair your car or trade it in? How about total high tech operating rooms which give doctors real time data on the patient's status? They even have a fancy name: AMIGO - an acronym for advanced multimodality image-guidance operating.

"It has it all: an MRI device that can be rolled into the operating room via a ceiling-mounted rail system; a positron emission tomography-computed tomography (PET/CT) machine to reveal biochemical or metabolic activity; an angiography X-ray machine to view arteries and veins; an X-ray fluoroscopy machine that uses dyes to show blockages; and an ultrasound system for tumor identification and targeting.

All the devices are integrated through an electronic system made by Winnipeg-based IMRIS Inc., which pulls together many of the imaging technologies for viewing within the central operating room."

It is not the first time that all these technologies have been used in operating rooms but the first time they are used simultaneously and integrated together.The benefits are great - doctors are better able to operate and monitor the patient.

But what about the cost? It is a $20 million room. There is one at Brigham and Women's Hospital in Boston and more are planned. It has been used for 30 operations since it opened a few months ago. It is not supposed to be considered an operating room but a research lab. So I guess it sits empty and unused the rest of the time. All that fancy imaging equipment isn't used on other patients who are waiting to have a test scheduled in the coming weeks.

$20 million is not small change. If it is a research lab how long till we see results? How long until the machines need to be upgraded or repaired? Will we see any results before all the technology is out of date? In the day and age of spiraling medical costs, is this a step in the right direction? I am not sure. I am all for medical progress but this seems very concentrated on a very small number of patients.

Maybe its the limousine that is used to go to the grocery store mentality - yes it does the job but its very expensive and more than necessary. I don't know. I just wish that progress made it so that all this expensive equipment could be used for others instead of just sitting there.

On strike!

2011-12-27T06:15:00.001-05:00

I think that everyone deserves the right to stand up for themselves and protest what they disagree with. I mean if you don't like the way a business treats you, you can vote with your feet and take your dollars elsewhere. If you don't like your salary you can find a new job or ask for a raise. Sometimes you can even go on strike. I don't really like strikes. I find them a bit excessive and costly in the long run. Life is full of the choices we make and we need to life with the consequences. If we choose a job and don't like the pay, find a new one. If we drop out of high school, and then spend our lives in jobs asking 'do you want fries with that?', we can't go on strike to say that its someone elses' fault we made that decision.

Yesterday I heard something on the radio about London taxi driver's being on strike because they wanted more holiday pay - they had to work on Boxing Day a public holiday and wanted two more days off. I am not sure of all the details but basically if taxi drivers are on strike, people will find other ways to get around so they won't spend their money on taxi fares. In the long run, they may start to avoid using taxis and the taxi companies lose income which doesn't help them or allow them to easily pay their employees more.

There was the Verizon strike this summer where management was harassed and ended up in several criminal arrests. I am not sure how much that helped the workers cause. I mean they were upset with management and wanted more compensation but if they resort to criminal activities as part of their strike, I think management might be less inclined to be nice to them in the future.

But another strike is a bit more serious. There are 10,000 doctors on strike in Rajasthan, a state in India, protesting pay rates and promotion opportunities at the state hospitals that cater to the poor and want to be on par with their federal counterparts. Maybe they have a valid point and should be able to strike. They are finding other doctors - from the Army and elsewhere to fill in - and 420 doctors have been arrested for being on strike. Unfortunately this can result in consequences for the patients. The government claims no deaths yet but how long can this go on with interim plans?

This leads to the question - does everyone have the right to strike? Are there other ways to show your disagreement with your bosses. While I think everyone has the right to protest, I am not sure about doctors striking. Don't they swear to the Hippocratic oath that says to do no harm? But if they are neglecting their jobs on principle, aren't they potentially doing harm? Their job is to care for patients and by neglecting them, they are not helping their cause.

Making choices

2011-12-26T06:09:00.001-05:00

Along time ago, I remember being in a junior high class where we were asked to spend the next 24 hours writing down how many decisions we made that day. I chose the easy option and decided not to make any decisions so it would be easy when I got to class the next day. I think I was laughed at by my class mates when I said I had only made one decision. Basically we make decisions constantly on large and small things. Do we want more milk in our coffee or tea, do we want to sit on the left, middle or right side of the sofa, do we want to wear pink socks or blue ones, do we want to look at this or at that. And the list goes on.Sometimes the decisions are easy and sometimes they are much hard.

Part of being a human being is learning to live with the consequences of our decisions. Sometimes they aren't pleasant - maybe the milk in our coffee was sour or maybe a large 'odorific' person picks the seat next to your chosen one. Do you hold your breath, breathe through your mouth or move and hope they don't think you are rude?

When faced with a nasty medical diagnosis you also get to make decisions that can be life or death. It goes with the territory. You review your options and decide what you think is best for you - what you are most comfortable with. It is your choice and you make it. You don't let someone make it ofor you - you do it on your own, or with our own team of family and doctors.

Then the worst thing you can do is to start second guessing your decisions. You can't undo the surgery you had although you can have it later, but then is it too late? Actually that is the second worse thing to do - second guessing your own decisions. The worst thing you can do is second guess someone else's decision. They made their choices and they are coping with them. So don't tell them they were wrong.

When I had my second cancer diagnosis, I made decisions with the help of my husband and doctors. Sometimes people I knew would basically say 'I don't know why you chose that as I know of something I think is better.' No they wouldn't use those words, they would say things like 'my brother's neighbor's hairdresser's dogwalker's nephew had cancer and their treatment was protocol Z so I can't understand why you are getting protocol B instead.' Maybe they had good intentions but they start causing you to second guess your decisions, causing more stress and further complicating the situation.

Steve Jobs had pancreatic cancer for several years. After his death some 'rocket scientist' (and I use them term loosely) says that he may have caused his own death by choosing alternative medicine over conventional cancer treatment. Um, maybe that's what he chose - he made his choices and did what he wanted to do. It is no time for someone to say he did the wrong thing. How do you think that makes his friends and family feel? I think people should just keep quiet at this point.

Holiday thoughts

2011-12-25T07:01:00.000-05:00

Today as Christmas, unless you somehow missed it and haven't heard about it, and many people celebrate it but not all. Recently a friend was blogging about how Christmas for her is different - she's Jewish and its her birthday. She doesn't get to celebrate her birthday on her birthday with her non-Jewish friends. The goyim are all doing Christian things like going to church and opening gifts. Other people have their own holidays to celebrate - Hanukkah, Kwanzaa, Festivus, or other holidays at different that occur at different times in the year.

Whatever the holiday there are always are a few consistencies. Families who celebrate it get together and do their thing - usually eat, sometimes gifts or religious services too. Families who do not celebrate do their usual thing. Some holidays require businesses to be closed by law. Some holidays allow businesses to be open. Usually there are some kinds of restaurants open for non-holiday celebrants as well.

But there is one thing we should never forget there are some people who do not get holidays - think about it what is always working 24/7: public safety, military, medical professionals, emergency management people - do you think the guy at the nuclear power plant who is in charge of making sure there aren't leaks ever gets time off? Isn't someone supervising the internet somewhere to make sure a server doesn't crash - and tell me with all the servers in the world one of them is bound to crash every day.

On a holiday, I am sure all these professions allow for some juggling - well maybe not the military - to let people spend time with their families or allow them to trade off each year. But there is always someone there. If you are hospitalized, you don't get a day off to go home for a holiday meal - if you could they would send you away. If you are in a car accident or something, you don't have to wait until tomorrow to get fixed up in an emergency room - and the firemen, police officers, and EMS are all there to take care of you.

This past Friday, December 23, I had a doctor appointment at 3:10 pm. When I scheduled it I didn't think much of the timing of it but when I arrived at the hospital, it was clear it was a very slow time. The parking garage had several primo spots available. The waiting rooms were mostly empty. I was one of three people sitting in a waiting room which usually has a constant flow of patients and staffers in and out was very quiet. My doctor was running late and I didn't leave until well after 4pm. I had to stop by admitting where there was a single, young woman working. Even though it was a quiet time, everyone I saw was cheerful, pleasant, caring, and happy to do their job. They weren't complaining that they were some of the last employees in the hospital right before a holiday.

I saw this article earlier last week reminding us to thank all our nurses on Christmas for their care. I think there is a lot more than that. We need to thank all of those people who take care of us and make sure we are safe and healthy at all times. Holidays should be for everybody but we couldn't survive them without some help.

PS Happy birthday, Judy!

More pictures!

2011-12-24T10:10:00.000-05:00

Are more pictures better? Back in the days of black and white cameras on tripods, a professional photographer would come and take a single posed shot of serious looking people dressed in black. After being hand developed a single picture was produced with no copies to send out to friends a relatives. Then personal cameras came into play and little towers of flash cubes were added on. Film was sent out to be developed and you crossed your fingers until they came back to hope that everything was in focus. You might take a couple to double your luck but still a lot was left up to chance. Then digital cameras came along and we clicked away like mad - shared them everywhere. Focus and aim become less important as quantity increases your odds for a good shot. All of our foibles in living color are available worldwide in this digital age.

In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more. Is this better or not?

Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.

Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.

When medicine goes wrong

2011-12-23T06:33:00.001-05:00

How do you undo a surgery? Well you can't restore all the little nerves, blood vessels, tendons and muscles to their pristine untouched state - that just doesn't work. But you can have implanted thingies removed and replaced with a newer model. But this means the whole mental, financial, physical stress of the original surgery all over again and more. I mean we hear about the cases of the doctors took out the wrong part, or someone received the wrong medication or wrong dose, or got an infection in the hospital. But what happens when its a much bigger mistake affecting thousands?

One example from this morning's news is that a child who received a transplanted blood vessel and two others who received kidneys now all have hepatitis C. These were all traced back to a single donor and a testing error at a tissue bank and some delayed communication. These three people now face lives full of illness. How do you undo that one? You can't. Ever.

But here is a much larger example of medicine gone bad. There was a French company which used non medical grade silicon in its breast implants - silicon meant to be used for mattresses (ick!). The company was stopped in 2010 but there are 30,000 French women with their implants, 1000 of whom have had them rupture so far. The French government is recommending that all 30,000 women have these removed. There have also been 8 cases of cancer possibly linked to the implants and one death.. A rupture is very painful and requires additional surgeries. So the French government has banned them. But the company had made 300,000 implants over the 12 years in operation - some went to the UK and many went to South America and other parts of the world.

The British government is downplaying the cancer risks from these implants and claim they don't have a cancer link. But they didn't mention the risks of them rupturing, recommend consulting with the implanting surgeon if there are concerns and are not recommending removal of this brand of implants.

But BACK UP A MINUTE, a company used inferior quality materials to make medical implants and where are the fines, penalties, lawsuits? I am not a fan of stupid lawsuits but in this case where 30,000 women are going to have to have a second surgery. Even if France's national health care pays for it, that is still a lost cost. What about the emotional and physical strain?

Yoo hoo, the 'morons' (and I use that term loosely, feel free to substitute a stronger word if you want) who made the decision to use the inferior silicon and the other 'morons' who approve them should be held accountable in some way - financially, civilly, and criminally. Some where a long the manufacturing pipeline there was some deception which will cost millions of dollars/pounds/Euros to the general public as well as physical pain and suffering and emotional distress when faced with more surgery.

This is a situation which is relatively scary. I mean it was caught here but what about other cases of this we do not know about elsewhere in the world? Medicine when done wrong is really hard to undo and should be avoided at all costs.

Were they trying to be sneaky?

2011-12-22T06:28:00.000-05:00

The long arm of the law caught up with 13 pharmaceutical companies for overcharging Medicaid customers in Massachusetts. The state will get $47.4 million back from these companies and a total of $69 million overall. Other states with help from the Federal Government are also going after the pharmaceutical companies and the fines collected are expected to grow substantially.

The way I understand it (and I am not 100% sure) is that Medicaid makes agreements with pharmaceutical companies on the prices to be charged to those on Medicaid. And apparently they are accused of false pricing, kick backs, and off-label promotion of the products. The state could have accepted a much smaller settlement as part of a federal case a few years ago but stuck to their guns and got their larger award.

I am not sure that the pharmaceutical companies are trying to be sneaky or intentionally break laws. I am sure they are ethical companies but practices such as these are not unknown in the business world. All it takes is a unscrupulous person or two and voila a crime occurs.

In an era of skyrocketing medical costs and local and federal governments strapped for cash, any violation should be prosecuted and moneys redeemed. Over charging for medications end up costing us tax payers a lot more in the long run.

Not a political post

2011-12-21T06:18:00.002-05:00

This is not a political post but I admit it is slanted towards politics. We are all aware of how our elected representatives in both houses of Congress have been playing a long game of 'its my way or the highway' and end up at cliff hanger votes at the last minute. Well these lovely leaders are at it again. The payroll tax vote was rejected by the Senate and they went home until after the first of the year. Why am I blogging about the payroll tax vote? I am not.

I am blogging about the fact that tied in with that vote are several other issues including the unemployment extension, some stupid pipeline thing and the 650,000 doctors who treat medicare patients are facing steep drops in compensation on January 18. That is what I care about. I am ignore all the other crap tied in with this one vote that is the current holiday stale fruitcake that will be left to kicked in to a corner somewhere in January. (I do realize that there are a lot of people affected by the other things tied in with the vote who are also stressed - I do acknowledge their issues but they are outside the realm of my blog.)

People who rely on Medicare are now stressed and worried through their holidays because the politicians are idiots and only care about their own egos than then people they represent. "The “vote seriously destabilizes Medicare, and causes anxiety for physicians and seniors who depend on it,’’ said Lynda Young, Massachusetts Medical Society president, in a statement yesterday."

If there is a backlog in processing claims because the vote is not taken, the Medicare computers will likely crash causing even more problems. Too bad the politicians don't remember that the seniors who use Medicare are the most likely to vote. But this isn't a political post.

Medical Costs

2011-12-20T06:25:00.000-05:00

We are all aware that medical care is expensive as is health insurance. But do any of us really understand why? That I am not so sure about. There are some things I do understand - doctors and other medical professionals are highly educated and trained and deserve a decent salary in return; insurance companies, hospitals, and medical centers are businesses and are trying to run in the black as opposed to the red; medications range from really cheap to phenomenally expensive; medical equipment can be very expensive; and the list goes on.

Here are two ideas where I think the idea is right but I am not so sure the execution is. In the first idea patients are rewarded for choosing lower cost medical care. They have access to a medical concierge who directs them to cheaper care for tests such as mammograms and colonoscopies and are rewarded with a check from their insurance company. Shouldn't that reward actually lower their insurance premiums? Also doctors are concerned that they are referring patients to a place where they are comfortable with the quality of care so once again are insurance companies making medical decisions solely based on their wallets? And if the savings is $1700 for a colonoscopy shouldn't the patient's reward be substantially greater than the $10-$75 quoted?

In the second idea, Medicare reimburses doctors per each patient not for each procedure. Doctors are then rewarded for staying under budget and penalized for going over. Again insurance companies are making medical decisions based on their bottom lines.

In a free market economy (as I recall from those days in my deep dark past of economic classes in college) is based on supply and demand. So where is the price list so that people can shop around? There isn't one. Prices are set through secret negotiations between insurance companies and medical service providers - and range substantially. Patients aren't concerned with prices because their insurance covers it and they don't get to see the price so they can care anyway. Also insurance premiums are negotiated between employers/blocks of employers and their insurance companies. Rates are negotiated based on desired rate increases on the part of the insurance companies vs. changes in co-payments and covered items on the part of employers and patients.

I am going out on a limb here and if anyone likes this idea and can make any of these changes, feel free to act on them. What if hospitals and insurance companies were transparent when it came to sharing pricing? What if you got a price list that told you how much the same test/procedure/medical adventure would cost at different places and you also got to see a review of the quality of care? Then you could make an educated decision on the care you were receiving and what it cost?

More on cancer vaccines

2011-12-19T06:23:00.000-05:00

Here's a little more about those well publicized cancer vaccines. They have their pluses and minuses which are clearly illustrated in these two diagrams:

Some of the downsides are clear that they are so far very expensive, may have to be custom made, and are for very specific treatments. But one of the very clear upsides is that where one is working, companies are trying more:

Many more cancer vaccines are under development, with hundreds of trials underway in patients with breast, prostate, lung, kidney, colon, cervical, brain, and pancreatic cancers, as well as lymphomas. Once companies confirm the effectiveness of these therapies in one type of cancer, they are likely to try them in others.
“From the immune point of view, the distinction between one cancer type and the next is not so important,’’ said Dranoff, who did early work on Yervoy. “That’s part of why so many companies now are developing these agents.’’

So a lot more promise but we need to be patient. Crap. I am sick of being a patient patient. But I will suck it up and continue to optimistically watch this progress.

Medical roller coaster

2011-12-18T07:50:00.002-05:00

Last night I actually attempted to be a social butterfly and went to two parties (without my husband because he is cranky as he now has my cold). At the first party a friend was talking about the medical roller coaster of having a heart attack at 43 and now living with the constant what if fear. She said she has a stent and has changed her life - taking better care of herself, quit smoking, etc but constantly wonders what if her arteries are clogging again. She asked her cardiologist and he tells her that since she tests well on stress tests and feels okay the assumption is that her arteries are doing fine. There is no way to tell if they are opening up more or slowly clogging up again without some invasive tests. She feels like she is living in constant limbo. I talked to her a bit about it how learning how to balance the ups and downs of the medical roller coaster. Its just learning to cope and it has its definite ups and downs. Its not just cancer that puts you on that lovely roller coaster.

At the second party, despite the unexpected arrival of Santa Claus to replenish the miniscule beer supply (really he showed up with a case of beer), the elephant was clearly in the room. The host of the party is living the 'chemo for life' program with a stubborn case of Stage IV colon cancer. While he looked pretty good and was socializing with his ever present bottle of water, he did need to sit down for the bulk of the party and at one point snuck off to find one of the really good drugs his oncologist provides. He is on the same medical roller coaster but one with steeper hills and bigger drops but was talking less about it. I am not sure everyone realizes how serious his situation is. His treatment only has one end. When I left I wished him well on his upcoming scans this week. They will tell the story we hope will bring a merry Christmas.

So the medical roller coaster is alive and well for many of us and takes many forms. How scary a ride is a matter of perspective.

A little more optimism

2011-12-17T07:30:00.001-05:00

I happily discovered this article yesterday - that someone else helpfully posted on a cancer message board which greatly eased my internet roamings. It seems we are getting closer to that Star Trek utopia where they talk about cancer being cured in the 21st century as a cancer vaccine is looking more and more promising. There are some that have been tested and are in the development pipeline. This means that actual marketability is within a reasonable range of years - provided that they get through clinical trials.

Imagine a world with out cancer. Is it possible?

- All medical professionals would need to be retrained
- Chemotherapy drug manufacturers would need to find new products
- All those nasty cancer treatment side effects would no longer be a problem.
- People would live longer.

Next step a cure for the common cold and world peace.

Ending without regrets

2011-12-16T05:55:00.000-05:00

When we get to the end of our lives, I would think we would not want to be filled with "shoulda, coulda, woulda's" but to be able to go peacefully without regrets. Life is to be lived and enjoyed - we should be doing what we want and having an enjoyable life-work balance.

Somebody wrote a book about dying with regrets and someone else blogged about it. So now I get to blog about a blog - how creative. Anyway, here are the five biggest regrets of the dying taken from listening to people in palliative care for years:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.
I wish I didn’t work so hard.
I wish I’d had the courage to express my feelings.
I wish I had stayed in touch with my friends.
I wish that I had let myself be happier.

What does this list teach us?

Take time to stop and smell the roses
Learn to express our feelings and do what makes us feel good.
Surround ourselves with people we care about.
Do what we enjoy.

No one has ever died saying 'I needed to work longer and harder for someone else'. We all need to do things we don't necessarily like but we also need to learn to fit in the things we want. So take a break and do something for yourself every so often. Its all about looking out for yourself.

An Example of Coping

2011-12-15T06:25:00.001-05:00

Yesterday, courtesy of my lifeline, the DVR, I watched a recent episode of The Closer called 'Relative Matters'. Originally I wasn't such a big fan of the show but it has grown on me and I watch it regularly. In this episode, Kyra Sedgewick's (the star) father is diagnosed with thyroid cancer.

It throws the family for a loop and shows their coping from all sides - patient and family members. The emotions they all go through are shown in towering rage and tears. After tears, one of the first things Kyra does is to run to a medical examiner for advice on how serious the diagnosis is. I am interested to see how this story continues through the season as I feel it is a fairly accurate depiction.

Although I can't show the entire episode because I don't have access through my internet provider you can watch it here (meaning I don't have the power). In the meantime, here is a five minute preview which shows a bit of it (which I can't even embed because again I don't have the power). I actually like the idea of a little publicity for this relatively rare cancer that is increasing in incidence.

On another note, if you are unsure what the thyroid actually does, here is a pretty good description of its power and how messed up it can make us lucky people who live without one.

Thyroid cancer information

2011-12-14T06:51:00.001-05:00

Finally I have found a nice little compact resource on thyroid cancer. It is published by the Thyroid Cancer Survivor's Association (www.thyca.org). There is not a lot of information out there about thyroid cancer because it is relatively rare - about 30,000 cases annually out of the 1.6 million total cases of cancer in the US each year. Also, its is one of those so called 'good' cancers (and again if you say it to me, I'll be forced to smack you - no cancer is a good cancer) as the survival rate is relatively high.

However the result of treatment for thyroid cancer is a lifetime of monitoring to keep your thyroid levels right - your thyroid levels can affect all sorts of things in your body including blood calcium levels, metabolism, etc - and monitor for recurrence. That's right thyroid cancer is known to recur up to 30-40 years later. So never mind that you get through the first five years when most cancers recur, its the first 40 years that you have to worry about recurrence. According to this new book:

"After your treatment, you will receive life-long monitoring. This is for two main reasons.
• First, long-term monitoring is important to make sure that your dose of thyroid hormone replacement is appropriate—neither too low nor too high for your specific needs.
• Second, you will receive testing to find out if there is persistent disease or possible recurrence. Many people with
differentiated thyroid cancer experience persistent disease or a recurrence, sometimes many years after the initial treatment. The prognosis for any person with a recurrence is better if it is discovered early. This is why life-long monitoring is important.
• The exact type of monitoring, and how often it takes place, depends on the size of the original tumor and whether the cancer had spread locally or distantly, as well as other factors.
• People free of disease receive less monitoring or testing than those with evidence of persistent disease.
• Also, testing is spread out and becomes less frequent when the patient becomes free of disease. You and your doctor should discuss a plan to fit your situation.
Monitoring will most likely include:
• Physical neck examination, including feeling the thyroid bed area. Typically, this is done every 3 to 6 months for the first 2 years, and at least once a year thereafter.
• Blood tests. Certain blood tests will determine if you are on the right dosage of thyroid hormone replacement. Your medication dose may change over time. Blood testing is also useful to monitor for cancer recurrence. The blood tests will depend on your type of thyroid cancer.
• Neck ultrasound. This test is increasingly used because it is a very sensitive way to find potential disease in the neck. It involves moving an instrument along your neck, without any pain, and there is no radiation exposure associated with it."

So it may be a good cancer in that you probably won't die from it right away, unless you have Anaplastic thyroid cancer which is only given a Stage IV diagnosis and prognosis, but you have to keep watch for the rest of your life. And cancer is cancer no matter how you call it. If you want to learn more, go here and down load your own copy of the new book.

In case you thought I was making it up

2011-12-13T06:25:00.001-05:00

A new medical study (which of course we needed) has shown that cognitive issues exist after breast cancer treatment. Basically this means my chemo brain is real. Go watch the video here. Some major technological advance (or my chemo brain) has prevented me from embedding it.

It is nice to know its not all in my head that others cope with it as well. I like it when a medical study agrees with my thinking instead of confusing me.

Insurance insanity

2011-12-12T05:54:00.001-05:00

I go to the hospital and pay my copay. Then I get a little statement in the mail which tells me how much more I owe - which is 15% of the allowed amount for whatever it was. Then I get a bill from the hospital and pay the rest. Simple? Right. Sure. Then I get a check back from the hospital telling me after an audit it shows I was owed this. They do not reference a specific visit so I never know what these are for. I called once and was told that often the insurance company changes what they cover and I get a refund or another bill. It drives me crazy.

The first year of my medical roller coaster I tried to match up bills and statements and copays and gave up as it simply didn't work. Especially with these stupid little refunds. Its not that I mind getting money back but since I cant attribute it to a specific thing I have to just assume that it is correct. I am not an accountant (and am not big on balancing my check book) but I don't think this is good accounting practice. But that's okay I am merely a patient at the mercy of the hospital and the insurance company.

This is a minor problem compared to what other people go through. First the insurance company tells you they will pay and then they change their mind. Can I tell you how wrong this is? Insurance companies should not have the ability to make medical decisions for patients. And the worse thing they could do is agree to pay and then deny it, retroactively. Are they inhuman or something? Or just need a smack in the head?

Lifestyle causes cancer

2011-12-11T08:09:00.001-05:00

40% of cancers are due to lifestyle factors? Hmmm.... I'm somewhat surprised. I don't consider these to all be lifestyle options we have chosen. I am not sure we can change all of these: being overweight, alcohol, tobacco, sun/tanning booths, too much red meat, lack of fruits and vegetables, lack of fiber, lack of exercise, post menopause, having children, infections, radiation exposure, and occupational hazards.

For women you can't change menopause, it happens. And on having children? Maybe you never wanted them or you wanted them but it didn't work out for you? Not much you can do about that after your mid-40s.

But the whole part about exercise, eating right - fruit, vegetables, fiber, and red meat, watching your weight, alcohol, and tobacco are all changeable. Radiation exposure is a bit difficult. I mean you can minimize the number of x-rays and other medical exams you have but the sun provides natural radiation and if there is what is radiation leak you don't know its there. I mean the air doesn't turn blue if the air is contaminated so you may not know. Infections are somewhat preventable but not always. Occupational hazards are another - whether you are a construction worker who was exposed to asbestos or a high tech lab worker who was exposed to carcinogens - you don't always have the option of changing your job.

From my point of view, I do eat right, I used to smoke but quit, alcohol not as much, I used to be skinny prechemo, also chemo put me in menopause, I've never been in a tanning booth and always use sunscreen because I fry in the sun (but was exposed to a lot of sun as a child), I am relatively athletic, I never had children, and don't think I work with radiation or other occupational hazards. So am I in the 60 percent? I don't know. I am not going to try to second guess this. I hate these articles. They always give people with cancer a guilt trip.

Cancer changes everything

2011-12-10T06:13:00.001-05:00

Its funny how a cancer diagnosis can change your opinion of things. I am not taking a political stance here but I find it intriguing how some one who was so completely against health care reform, once diagnosed with cancer, is now one of its biggest supporters.

Spike Dolomite Ward, a columnist with the LA Times, was originally for Obama but then against health care reform. Then after having to choose between her mortgage and her health insurance, the house won, she was diagnosed with cancer. Because of health care reform, she was entitled to insurance under the preexisting condition clause. This changed her mind. I don't know Spike and I don't really care about the politics of health care reform.

I realize some people are upset about the idea of being forced to buy health insurance. I can understand that. No one wants to be forced to do anything. I also realize that some people don't want health care reform because they dislike Obama simply because of his politics. That attitude isn't one I am very comfortable with. Obama is president. He was elected by the majority. He signed the health care law as he said he would. You can't undo that so stop complaining. If you don't like him, don't vote for him. (This obstructionism in US politics is getting out of hand - don't let me get started). I don't really care about the politics of the situation. It is not about politics. It is about patients and people who are trying to pay their bills.

I am some what disappointed that it took a cancer diagnosis to make one person change their mind about health care reform. I think there is a lot of energy being wasted on the concept of health care reform and not enough energy being spent on using the benefits of it. Young adults in their 20's now can stay on their parents health insurance instead of going without insurance. Those with preexisting conditions now can get coverage. More preventive care is covered. I know taxes are going up as a result but they are always going up.

Health care reform is here to stay. I am not saying that the so called Obamacare will be the program that sticks with us. But health care in this country has and will continue to change. The system as it stands now is failing us. Insurance premiums are skyrocketing. Doctors and hospitals are being squeezed financially. Patients are choosing between feeding their families, saving their homes or paying health insurance. Medications and medical equipment costs are more and more expensive. Insurance companies claim they are being pinched as well.

Cancer changed one person's view of healthcare reform because she all of a sudden was the patient who needed insurance. This is the point. The system isn't working. People are going bankrupt and dying from lack of insurance.

Taking care of yourself

2011-12-09T07:21:00.001-05:00

I was reading a cancer message board about things the poster had learned that her doctor hadn't told her. I don't know where the gaps in communication are but there always seem to be some in the medical world. I don't think any of the gaps are intentional but they always seem to be there. I think doctors and nurses see dozens of patients each day and if that was me, I would have a hard time remembering to tell everyone everything I needed to say. I would be constantly asking 'did I already tell you that?'. Its human not to remembering everything.

But I have learned that it is important to ask questions, question things that seem confusing, and do your own research. And write things down if you can't remember them (my biggest problem). I can't tell you how many times I have been taking a medication as I thought was correct to find out that I was doing something wrong. I have medications that can't be taken with anything else or can't be taken within an hour of food or four hours of vitamins. Its complicated. But my doctors have only given me details on taking them when I have asked specifically. I have actually gone through my list of what I take with what and when (its kind of complicated actually) to make sure its okay.

I have also learned that when I am scheduled for another medical 'adventure' I need to ask a whole list of questions - not the printed procedure information that they give me - about how long it will take, can I drive home, what are pain expectations. Also, what about the results - when to expect them, what we will learn from them, etc.

Finally I have learned to be proactive about my care. I ask if I really need tests or adventures. I try to consolidate appointments so I can minimize trips to the hospital. I ask for things to be scheduled for my convenience, not theirs. Its all about me and not about them.

Supply & demand vs. price gouging

2011-12-08T05:57:00.001-05:00

For a little economic lesson this morning, (don't worry I did take and pass both micro and macro economics in college but that was a long time ago and I don't remember much) one of the basic free market principles is supply and demand - how supply determines demand and hence sets pricing and more.

Medications are developed and manufactured by the companies who own the brand and are often sold for some giant price. As with any manufacturer, a pharmaceutical company will run into the same issues any other would - production issues, lack of raw materials, broken machinery, etc. These cause disruption in production and availability. Some production down time is allowed for - annual factory maintenance etc - but not all down time is planned. This causes shortages - thus reducing supply.

When this happens in your grocery store, you buy a different brand or go with out. But when it is a life saving medication, its not that simple. New guidelines are being put in place so that manufacturers have to be more proactive in informing people about shortages and be better about preventing them. In the meantime, when there are drug shortages the scumbags (and I use the term loosely) who get the remaining amounts of the drugs and sell them to the hospitals at astronomical prices. Also known as price gouging.

As we live in a very reactive political world, there is legislation being introduced next week to make this price gouging by 'unscrupulous drug dealers' (a/k/a scumbags) into a federal crime. These people are forcing hospitals already in a belt tightening time, to greatly overpay for something that is needed to save lives. They get rich, a few people die, who cares? Right? WRONG! It should be a crime. And the money the hospitals are overpaying for these necessary drugs could be used to help other people as well.

This is the kind of thing that just ticks me off and makes me crazy. Its right up there with the 'losers' (and I use that term loosely) who claim they have cancer for the money and sympathy but are healthy. Grr!

Perhaps some real progress

2011-12-07T06:22:00.001-05:00

How about a vaccine to prevent cancer recurrence? And it has already gone through Phase II clinical trials. The Phase III trials start next year. That sounds pretty darn good to me. Yes its only for some people with certain kinds of breast cancer and it doesn't eliminate risk of recurrence but reduces it by more than half.

These researchers chose a different route and it worked:

The senior investigator, Colonel George E. Peoples from Brooke Army Medical Center, Fort Sam Houston, Texas, told Reuters Health by email, "We have taken a different approach to cancer vaccine trials and focused on the adjuvant setting. We want to use our vaccine to prevent disease as opposed to treating established tumors."

As it has gotten through Phase II trials, this means they have already been following patients for an average of five years. It is my understanding that once a drug has gotten this far, they have a pretty good chance to get through to FDA approval.

I'll call this some real progress and look forward to more of the same.

Reading between the lines

2011-12-06T06:55:00.001-05:00

This blog post made me think about the importance of reading between the lines. Dennis Hopper died from a supposed slow growing cancer. Hmmm... If its slow growing, why did he die so young? Prostate cancer is one of those 'good cancers'. I had two so-called 'good cancers' (and if you say they are good to my face I might smack you silly) - you know the kind that you are told 'if you had to get any cancer that's a good one'. Hah! There is no such thing as a good cancer. (I will say my now retired dentist did make such a comment to me about my breast cancer and we did laugh about it - because he said it in the right way and he also had cancer. People with cancer get special dispensation to say cancer things to other people with cancer as they really understand.)

When you are given those lovely words 'you have cancer', 'its malignant', 'its positive' or some such life changing phrase, among the many things you probably do is go look at all the numbers as well as get a lot of medical advice. The numbers may tell you one thing and the different medical advice, some different things. This is where you need to read between the lines and figure out where the truth really lies.

The stark reality of the numbers doesn't tell you the whole story. They give you the five year survival rate by stage and tell you how to stage your cancer - or what stage you want to be in. But if it says 80% are alive at the end of five years, 20% are not. But they don't give you that number, you need to do the math in your head. Somehow by only putting the positive number its supposed to minimize the impact. Even when the five year survival rate is less than 10%.

Then your medical advisers don't tell you the whole story either. They can project what they expect. They can provide you with a plan of care.They can tell you in nicely couched phrases their opinions of your prognosis. But are they going to come out and say something like 'you have an 80% chance of being here in five years' or 'you have a 20% chance of not being here in five years'? No. Never. I flat out asked my oncologist about my chances at one point. He did give me a fairly clear answer that was relatively positive. It took me a while to get up enough guts to ask that one.

But as a patient or bystander, you have to compile all the information together in your head and start deciphering the pile and figure out where you are, where you want to be, and how you are going to get there. You can't just go by the numbers - the 'good cancers' kill people each year as well as the 'bad cancers'. This means that while some people don't make it when they have a relatively good prognosis, other people with a bad prognosis live for years or even decades.

All the medical advice and statistics are based on averages. Averages are the same thing that give us baseball pitchers with a low ERA who walk three batters in a row or soccer goalies who miss that single (but very critical) goal in the season. They give us expectancies based on past experience. But they don't always predict the future.

Speaking of viruses and colds

2011-12-05T07:54:00.001-05:00

Last week at work, there were two co-workers who didn't miss a day but both obviously had a cold. Their claim was that since they had been sick for a few days they were no longer contagious. The rest of us thought they shouldn't be there. I sneezed a few times last week. This morning I woke up with a cold. Grrr... As a result, this is one of my more uninspired posts so feel free to skip it if you are bored.

There are things in common between a cold and cancer. There isn't a cure for either. There are also risk factors for a cold as there are for cancer. I do try to minimize my risk factors. I eat a lot of fruit and vegetables, exercise, take vitamins. (That sounds like the same as for cancer.)

Colds don't necessarily do you in but they do make you feel like crap for a few days. And I have a lot going on and can't afford take any time off from work - the downside of part time work is no sick pay. Its not just financial its that I have a lot to do that has deadlines. I also have meetings two nights this week that I really should go to - they are for my other job. I will not go to work or the gym today or tomorrow. Last week was my first week back on the track of three times a week at the gym. I guess I am back down to two trips this week and it has barely started.

I saw a news article recently about how to avoid getting sick - but now as I am ready to write about it I cant find it anywhere. They included things like avoiding sick people, washing your hands regularly, etc.

I did just look up the difference between a cold and a virus/flu. Basically a cold is centered in your nose and a virus/flu makes you feel bad all over. So far its my nose and throat and a general feeling of crap. But it does give me an excuse to spend the day in sweats, catching up on reality TV on the DVR and drink a lot of herbal tea with honey. I think I have some home made soup in the freezer too. But hey its not cancer. So I'll just suck it up and whine my way through it.

Tempus fugit

2011-12-04T09:03:00.001-05:00

Or time flies. (I had to look up the Latin part to make sure I got it right.) Some how we are approaching the end of 2012 and I have no idea how we got here. I remember partying like it was 1999 in the 1980s. I remember buying my first new-new car (as opposed to new-to-me) in 1989. When we were children half an hour until dinner was an eternity (but half an hour until bedtime was far too short).

All I know now is that I never seem to have enough time to do all the things that I want. Time goes much faster now. I have decided that is a fact. It has sped up. Something has happened along with global warming that has made temperatures go up and time go faster.

This week I am looking at my calendar trying to figure out how I am going to get everything done that I want to and I am not sure how it is going to happen unless I give up eating and sleeping or something.

And I don't even have a single doctor appointment and my schedule is still full. How I even have a week without doctor appointments is beyond me anyway. Last week I had four doctors and one x-ray. This week I have none. Next week I have one doctor and one back procedure. The week after I have one doctor and one back procedure. Then maybe another week off for the holidays.

But I digress. Time is going too fast. Some physicist must have figured out how to alter time and made it move faster. I am sure you agree.

Choosing a hospital

2011-12-03T07:26:00.001-05:00

I admit I never put much thought into choosing hospital for treatment. At my first diagnosis, I went to the new local hospital because that is where my parent's friend worked and helped get an appointment fairly quickly. I mean I had a pediatrician and then went to college and got cancer and needed a new doctor anyway. Then I started going there for all my doctor appointments so when 26 years later the next cancer diagnosis showed up, I continued to go there. I mean why not? It was local, had added a big oncology center with its latest expansion, the food is pretty good in the cafeteria, and they were nice to me. And the best part is they only have single rooms. You never have to share a room. Your insurance can't make you share a room. If you wonder what is so great about that go watch "The Bucket List" again. That was the best design idea any hospital architect ever had - single rooms with private bathrooms and showers.

I could have rushed to downtown Boston for a more specialized hospital such as Dana Farber or Mass General but that would mean driving in Boston which can be a contact sport at the best of times. And it would take three times as long to go about the same distance. 6.5 miles door to door from the local hospital in less than 15 minutes or 9.8 miles into Boston in at least 30-45 minutes. Add in rush hour and it could be an hour. I have a friend who decided to go to Dana Farber for chemo. She would have to leave her house around 7am for a 9am chemo appointment to allow for traffic- never mind trying not to lose your lunch as you sit in stop and go traffic.

Now there are other options around such as the Cancer Treatment Centers of America. I don't really know much about them but I do know people who have gone there from other parts of the country because it was a good option for them as they did not have quality cancer care locally. I am lucky as I live so close to so many hospitals which means there are lots of good doctors and nurses who provide a high level of care - competition improves lots of things - but many people don't have the luxury and have to travel long distances for their care.

Someone from CTCA commented on my blog yesterday so I looked at their website a bit. I never really have looked at them because I never had the need. The closest one is Philadelphia - a good 300 miles away. Anyway, they do seem to offer a high level of care and brag about their statistics on their home page. If I didn't live so close to so many other hospitals would I consider them? Probably.

If I had another cancer adventure would I consider traveling for treatment and making that big trip down town? Possibly. It would really depend on the diagnosis. Its going to take a lot to pry me away from my local care. And I would have to have a single room for any inpatient care.

Cancer in the workplace

2011-12-02T05:49:00.001-05:00

Cancer does not belong in the workplace. Actually health issues do not belong in the workplace. If you are disabled and need modifications to your employment, that is different. If you have a common cold and are sharing your germs with your co-workers, do everyone a favor and go home. But more significant ailments are not required to be in the workplace.

As the patient and employee, you are not required to tell your employer what is wrong with you. It is your choice if you do. But beware the perils of doing so. It doesn't matter how comfortable you are with your employment and your ailment and how much you want to share, it is others' perception of your ailment that is the concern. Cancer is scary to many people. Probably the scariest. There can be a bias as a result.

I didn't tell any employer or co-worker about my first cancer for 25 years. It was no one's business. Since my second diagnosis, one of my jobs which is a cancer support center, knows about my health issues. My co-workers at my other work know of some of my health issues - even without knowing about cancer I am considered the least healthy person there because I have millions of doctor appointments.

I have worked in many different places and been on both sides of the job offer - extending and accepting. Seriously, if there are two people up for a position, and one has health issues which could be perceived to interfere with their ability to do their job in the future, who is getting the job? Yes we know this discrimination is illegal in the US but we also know it happens in subtle ways. There will probably always be a little subconscious doubt on their part - what if they get sick again???

I read this article which discusses women with breast cancer in the workplace. On one hand I agree - health care practitioners need to improve how they advise women on returning to work or taking time off. On the other hand, why is it anyone's business what has happened with your health. The article states:

"But it is clear that there are considerable differences in women's experiences of returning to work. Some positive working practices were reported, but other organizations were guilty of a culture of ignorance. Many of the negative experiences centered on the unrealistic expectations and inflexibility of some employers, lack of support from colleagues and mistaken assumptions about the woman's physical appearance."

So why were the told what is wrong so they could have these issues? If you get cancer, all your employer needs to know is that you need surgery and some on going treatment. You may need to take time off or a curtailed work schedule for a period of time. For all they know, you could be having knee surgery and need a week off from work and then allowances for PT three times a week. It is not their business.

Since my second diagnosis, I have been a bit more open about my health but if there was another cancer adventure in my life, I think I would selectively share the information.

Maybe a little virus will cure cancer

2011-12-01T06:14:00.001-05:00

I find this very cool. A little research lab in Pennsylvania thought they had a broken incubator but may have stumbled on a significant breakthrough in a cure for cancer. As I am not technical and did not sleep well last night and have not had enough caffeine (not that I drink coffee any more and more only inhale the aroma) I will attempt my explanation:

There is a very simple virus that was being tested on cervical cancer cells which is believed to be caused by the Human Papilloma Virus. Someone left the virus cells in an incubator with the cancer cells and then went back and the cancer cells were liquified. They thought the incubator was broken but then could repeat this phenomenon and with other kinds of cancer cells. Now is that cool or what? Making cancer cells liquify and go away. Sign me up baby! I'm there.

BUT... Of course there is a big fat BUT here (not a big fat BUTT which is an entirely different thing). It has to finish being tested and going through trials. Which can take a couple of billion (yes with a B) dollars and 10-12 years. The article gives a very good and clear summary of what it takes to get a breakthrough from a lab to an authorized treatment:

"Steps to FDA approval
It’s a long, long road from the laboratory to the bedside, governed by the Food and Drug Administration. The vast majority of all drugs and therapies developed don’t make it. The American Cancer Society estimates it takes about 10 to 12 years to fully develop a drug or therapy from the laboratory to bedside use.
1. Preclinical (animal) testing. This is where Dr. Meyers team is in the process.
2. Phase 1 studies (typically involve 20 to 80 people).
3. Phase 2 studies (typically involve a few dozen to about 300 people).
4. Phase 3 studies (typically involve several hundred to about 3,000 people).
5. Submission of a new drug application is the formal step asking the FDA to consider a drug for marketing approval.
6. After an application is received, the FDA has to decide whether to file it so it can be reviewed.
7. Review of the application resulting in application approval or the issue of a response letter.
Source: Federal Food and Drug Administration"

So while this a very cool breakthrough and it looks very promising, we can expect to see it maybe in 2021 or so. However it has started my day off with a bit of cheery optimism in the middle of a week which has included an x-ray and 3 doctor appointments so far. In the meantime, I am cheering on this little virus.

If we can kill them, lets confuse them part 993

2011-11-30T06:29:00.001-05:00

Once again we are faced with the vast conspiracy to kill off all the cancer patients through confusion. First they said mammograms for everyone over 40. Then they said no, not until 50. Then the UK said only every 2-3 year after 50. Then Canada said after 50. Now the radiologists say mammograms should be done annually for women over 40.

Call me confused.

But what this is really telling us is 1, there is a vast conspiracy out there to confuse us all and 2, the only way to decide what is best for you is to talk to your own doctors and see what the two of you decide is really right for you.

A good idea that doesn't work for cancer

2011-11-29T06:17:00.001-05:00

Something else that works for everything but cancer. As yet another effort to control health insurance costs, in the past year tiered health insurance options have been introduced in Massachusetts. The point of them is to redirect patients to lower cost medical centers, thus reducing premiums for employers and patients. If you pay higher premiums you can have access to more hospitals and doctors. It kind of makes sense - send people for routine care to cheaper places.

People do complain with changes in health insurance particularly when it causes them to change doctors. And one of the biggest complaints with tiered health insurance is that people are forced to change doctors. I can understand that but I am not entirely sympathetic. If you have the same doctor for years you build a relationship with them and trust and like them. But we have to allow for change in our lives. We can't assume anything will last forever.

In the past four and a half years I have had my oncologist retire, fired my GI doctor and got a new one, found a new eye doctor, endocrinologist and primary care, had my long time dentist retire, and my dermatologist moved to another medical facility. I have also acquired an elbow doctor, an ankle doctor, therapist and meds therapist.. In fact the only doctors I have kept in the past four and a half years are my radiation oncologist, knee doctor, breast surgeon (and I only see his nurse practitioner these days). I may have stressed a little at the time of these changes but I am doing okay with all this. Change happens.

But the problem is with cancer and probably some other ailments, you quickly need to get to a specialist at an expensive place that specializes in cancer. This isn't a time to shop around for medical care. Yes you have a little time but if you need an oncologist don't sit there waiting to find the right one. You need to get an oncologist and a diagnosis so you have a basic idea of how aggressively you need treatment. If you don't like your oncologist you can find a new one at that point and then do some looking around if you want. But you don't want your insurance company telling you that you can't go to the specialized cancer center that could save your life.

Needed: Rocket Scientist Drugs who will work for cheap

2011-11-28T06:04:00.001-05:00

We have smart drugs now. They are very smart. They outsmart tumor cells and the tumors disappear. But they aren't smart enough. The drugs work for months and then they eventually stop working and the cancers return. These drugs are not cheap either. One of them 'vemurafenib' costs a paltry $9400/month or over $100,000 for a year, if it works for that long. It works for an average of seven months.

Actually these drugs are pretty smart. They target a tumor's weaknesses and melts them away. But I have two problems with them. Cancer cells are sneaky b*stards (excuse my language here) and learn to outsmart these new drugs. We need rocket scientist drugs which will continue to outsmart cancer cells and can stay ahead of them. The worst thing we could do would be to end up with drug resistant cancers which become resistant to treatment like some germs are to antibiotics.

We also need rocket scientist drugs who will work for cheap. A drug that costs $9400/month and only lasts for an average of 7 months is a bit on the expensive side. It doesn't matter if insurance covers it or not because the cost works its way back down through the cost chain.

Wanted: Rocket scientist anti cancer drug which can stay ahead of the competition by out smarting the cancer cells. Low salary, long hours, repayment - saving millions of lives.

So where should you live?

2011-11-27T11:01:00.001-05:00

It seems that it is important where you live in terms of rates of cancer and cancer survival rates. First I found a list of the top fifty towns and cities in Massachusetts with the highest rates of cancer - this data needs to be taken with a large grain of salt. The city with the highest rate of cancer is Nantucket - which is also home to lots of retirees and seniors. Cancer is more prevalent in older people so it would make sense where more old people live there would be more cancer.

Then I find an article on the UK talking about their great successes in increasing survival rates for some types of cancer but not others. One theory on why some blood cancers are have such high survival rates is that those patients are quick to be referred to a specialist. Now that's food for thought - if you have a cancer diagnosis, find an oncologist who specializes in your cancer.

Finally, as of 2007 cancer survival rates are increasing across Europe but still lag behind the US. And rates are worse in eastern Europe than in northern and western European countries. So location does matter. But also the best cancer survival rates are in Sweden, Norway, and Denmark. "The United Kingdom in particular comes out badly in the tables, showing cancer survival rates that are among the worst in Europe." I find this interesting in that it is sort of a rebuttal for the article above. I don't think this is a reflection on national health care because most of Europe has one form of it or another. Maybe its reflective of lifestyles.

But are their higher rates of other diseases in other places? Probably. This is only about cancer. We can all live in caves and stay out of the sun and eat raw food and never touch any chemicals...

Cancer isn't cheap

2011-11-26T06:49:00.001-05:00

Cancer is a very expensive ailment - even with health insurance. I have relatively good health insurance and for the fifth year in a row, I will max out my allowable out of pocket expenses at $5000. That amount really only covers my co-payments and prescription costs. Everything else is additional - travel, parking fees, dentists, eye doctors, etc. And my income has gone down because I don't work full time anymore. I work two part time jobs which get me close to full time hours. Since they are part time, I get no benefits from either. No paid time off, no retirement, etc. If I am not there I do not get paid.

As someone lucky enough to be living with cancer who gets to go to the doctor all the time, my expenses definitely add up. This coming week I have four doctor appointments. Last week I had none - because it was a short week. The week before I had three or four. I probably average around 8 each month. Each usually has a $20 co-pay.And I am not in active treatment - I just have follow ups and other medical issues.

I think this is a side of cancer that is under reported. People with health insurance have hefty bills as well. I think I have good insurance because it has an out of pocket maximum. Many people do not have this benefit and their bills run into the thousands annually.

This morning I received an email announcing a new online webinar on Managing the Costs of Cancer Care on December 8. I am not sure I can go but I have signed up for it and will see about rearranging my schedule if needed. There are also two recorded webinars that I want to listen to soon: Managing the Costs of Recovery and Money Matters: Finding the Resources to Manage Cancer Costs.

Something about the whole thing irks me about this whole thing. I feel like the patient is the pawn in the scam of ridiculously expensive medications, big salaries for someone somewhere, and insurance companies deciding what they will and won't pay for. We can only afford to get cancer if we are rich.

Prevention vs. screening

2011-11-25T08:21:00.001-05:00

We have been on the screening, screening, screening trip for a long time. Everyone is up on the controversy about mammograms at 40 or 50 and MRIs as a screening tool. We also are all up in arms every time the FDA changes a ruling on a cancer drug - is Avastin really helping breast cancer patients? But aren't we forgetting one teeny, tiny thing?

Prevention is important too. We all know the basics - eat your vegetables, don't get fat, be sure to exercise, don't smoke, don't drink, blah, blah, blah. But do we do that most of the time? Yesterday, being Thanksgiving doesn't count, in terms of taking care of ourselves. It was a holiday. We are not perfect people and we are allowed to overindulge once in a while in all the bad things - fatty foods, buttery sauces, gravy, ice cream, pie, cheese, wine, etc. But we can't do this every day. We need to be good most days. This means no fast food, nothing greasy, no big restaurant meals, etc.And we need to get our exercise.

There has been so much talk about research and screening and treatment but we also need to remember the bigger picture. Cancer has risk factors that you can reduce, even though we can't eliminate them, by taking care of ourselves. I think I have overlooked this as well until I was reminded by this article that I read this morning. As we live in a society with ever increasing waist lines, we need to remember that with increased weight comes increased risk of ailments - not just diabetes but also cancer and more.

So now that we have started to digest our big meals from yesterday, we need to get back on track and eat healthy, get moving, and think prevention.

Thanksgiving chaos

2011-11-24T08:49:00.001-05:00

This morning is a bit of Thanksgiving chaos. We have my brother, sister in law and four children staying with us. They arrived last night and we stayed up until midnight playing scrabble. Then this morning the first one was up around 6. We have had the normal range of what to eat or more correctly, what the children decide they don't like any more because they really want to cut the mask out of the back of the cheerios box - but they have to eat all of them first.

I have also made mashed potatoes, chestnut stuffing, and cut up vegetables for veggies and dip. However I havve successfully conned my brother into making carrot sticks. I think. I am still looking at peeled but uncut carrots.What this has done has made my back hurt already. A lot. But I have drugs. Hmmm.... A sedated Thanksgiving. That may not be such a bad idea.

Otherwise the cat is all stressed because there are strangers in his house messing up his nap space and times. Soon we are off to eat lots of food but the key is to remember to bring everything we need. Because of my lack of brain cells, I made a list. And lost my list (and maybe my mind as well).

We will eat too much and pretend a short walk will enable digesting of the vast quantities of food we will eat. Just another normal American holiday.

Happy Thanksgiving everyone!

We are turning into a country of shopping malls

2011-11-23T07:36:00.001-05:00

I am on a different bent today. Normally I find all things medical and health wise to blog about but today that is not what is aggravating me. I mean the pouring rain doesn't help - it needs to stop by 1230 so I can go out to lunch and not have to drive in a down pour.

Today I want to blog about corporate America - not in the Occupy movement sense but in how they treat their customers. First of all, retailers think they are doing customers a 'favor' by opening stores on Thanksgiving or as soon as they can after midnight. Here in Massachusetts, employees can't work until midnight so the stores will open at 1 am. They get an hour to get the store open before the onslaught arrives. But will people really go shopping at 1 am?

I was talking to a friend the other day who for 23 years has gone shopping with her daughter on black Friday at 5am, enjoying the first rush, shopping for a few hours and then going out to breakfast. This year the fun has gone out of it. They are not going to get up to shop at 1am. Their annual 5am shopping trip will lose its luster. Its the end of an era for them. I am not sure they will shop on Friday as a result.

What about that Target employee who put up an online petition to 'Save Thanksgiving'? He has over 196,000 signagture so far. There is an unofficial poll on CNN.com this morning where 84% don't want stores open on Thanksgiving. Do I hear some dissent in the masses here? Holidays are for employees too. They deserve some time with their families. Yes you can say if you don't want to work the hours, find another job. But in this economy there are not a lot of options for many people. Retailers are desperate for every dollar they can get. I'm not going to any store this weekend other than to take my 7 year old nephew book shopping for a belated birthday present. We will go to an independent store that is not in a mall. I will probably also shop on Cyber Monday to get a good deal for a coat for my husband that I have been waiting to go on sale but that will be at my convenience, not theirs.

In addition Consumer Reports has published their nice or naughty store list. This helps tell me where to shop or not to shop. The naughty ones include Verizon, Swiss Colony, Air Tran, Southwest Airlines, Sirius radio, Game Stop and American Apparel to name a few. But the nice ones include some of my favorite stores - Costco and REI. I can't find the actual CR article but at least a story about it.

Corporate America is unfortunately here to stay. However just because they try to tell us what we want and what we need, and when we should buy it, that doesn't mean we need to suck up to their whims. I won't shop in the middle of the night. I only shop when stores aren't crowded. I try to avoid the scams and to good to be true offers. I also try to buy local.

I think its time we vote with our feet. If we don't like poor customer service, tell them and stop shopping there. If we don't like the quality of their products, tell them, and stop shopping there. If they are the only store for miles around because they have forced out the competition (think Walmart and its evil practices on small town USA), and find another option. Maybe you can't go to a grocery store weekly but you can stock up monthly on the non-perishables further away and buy locally/non Walmart for the little stuff.

We also should remember money and goods aren't everything. If things are low cost, they are probably going to fall apart soon. Low prices don't mean good quality and good service. My last trip to Walmart resulted in rotten produce - it didn't matter if it was cheap in the first place if you have to throw it out and go shopping again.
Also, why do we need stuff? Its nice to give someone a gift, but what about a homemade one? For my family, they will get gift baskets of food I made and some yummy items I purchased. I have done this for several years and they are all happy. Less expense for me, I get to make cookies and eat a few on the way, and we don't amass more stuff. I really hate shopping malls and avoid them as much as I can. I also have a convenient bad back that allows me to refuse mall shopping trips by saying, I can't go shopping it makes my back hurt.

And Canada Too

2011-11-22T06:18:00.001-05:00

Yesterday I blogged about the UK's NHS recommendations from breast cancer screening. Well, today Canada's health insurance is the topic. They now recommend for women of normal risk that they get a mammogram every two or three years from age 50 to 74. According to their thinking there is no benefit for women from 40-49 to have mammograms because it doesn't save enough lives and causes unnecessary false positives, biopsies, and even surgeries. A woman of normal risk is one with:

No previous breast cancer.
No history of breast cancer in a first-degree relative such as a mother or sister.
No known mutations in the BRCA1 or BRCA2 genes.
No previous exposure to radiation of the chest wall.

Well, hellooooo!!! Knock, knock! WHAT THE HECK ARE YOU THINKING? If I followed these guidelines I probably wouldn't be here. I had none of the risk factors listed and still ended up with breast cancer at 46. Where is the thought that there isn't a cure yet? So if you miss it for a few years, you may have killed off your patient?

In reply: ""Since one in six women who die from breast cancer are diagnosed in their 40s, we simply cannot afford to see missed opportunities for earlier detection," said Sandra Palmaro, CEO of the Canadian Breast Cancer Foundation."

In addition:
Martin Yaffe, a professor in the departments of medical biophysics and medical imaging at the University of Toronto, called the recommendations "scientifically unsupportable."

"If followed, they will result in over 2,000 breast cancer related deaths that could be avoided by screening in Canadian women over 10 years," Yaffe said in an email.

Yaffe said the task force ignored scientific data from studies using modern technology that point to a 25 per cent to 30 per cent reduction in mortality through screening.

Women invariably say they're willing to tolerate the stress of having to come in for more imaging tests in exchange for a better chance of not waiting until a cancer is at advanced stage before it is found, added Yaffe, who is also a senior scientist in imaging research at Toronto's Sunnybrook Research Institute.

I hate this stuff. This is worse than insurance companies making medical decisions. This is the government making medical decisions.

Screening does more harm than good?

2011-11-21T06:28:00.001-05:00

I found an article saying that the UKs NHS policies of screening for breast cancer do more harm than good. Hello - screening is a good thing.

According to the article, the NHS invites women over 50 to have three-year screening mammograms (that is one every three years). Yes mammograms pick up things that may never turn into to tumors/problems at all causing stress and worry but the tumors they catch are more likely to be caught early. As opposed to the ones caught later in manual exams which are usually caught in later stage. And one third of all breast cancers are caught between the mammograms. But is the stress of a false positive more damaging than a late stage cancer diagnosis? I'll take the false positive risk any day. As opposed to the 'we found it too late risk'.
The article adds that women with breast cancer in their families should get the gene test because ten percent of all diagnosis are hereditary. That means 90% of all breast cancers have no hereditary connection - what are those people supposed to do? Get a mammogram every three years and cross their fingers in between?. A red rash can be a sign of inflammatory, an aggressive cancer - which is very rare, just a few percent each year of all cases diagnosed. Women should also be breast aware and do regular monthly self exams. Well, blah, blah, blah, this is nothing new.

Finally the article ends with: "Prof Evans tells menopausal women with a family history to avoid hormone-replacement therapy as artificially raising hormone levels can increase risk of breast cancer. The hormone oestrogen, which can drive some forms of breast cancer, is produced by fatty tissue. So the fatter you are, the bigger the risk."

Where do I have a problem this article? I am not sure I can count that high. I originally read this article and thought it might be a nice blog topic on the pros and cons of screening. Then I really started reading it and got ticked off. A mammogram every three years after age 50? And then they stop after age 70 unless requested by the patient? ‘By the age of 80 any lump is likely to be breast cancer. Women should be aware of any changes.’ - so at the highest risk age, screening is only at patient request? That is so (il)logical to me - it must be a government regulation. And did they just call me fat when discussing HRT and estrogen? They made me feel it was the fact I was not the perfect size 6 that is why I ended up with estrogen receptive breast cancer. I am not slamming the NHS but maybe they just need a new bedside manner in this whole article.

It saved my life

2011-11-20T07:49:00.001-05:00

Frankly I am sick of these people who are quoted in articles saying something 'saved their life'. Especially when its something that is newly developed and just made available. 3-D digital mammograms are used at Mass General where they were developed and finally approved by the FDA this year. Of course in the article, a woman is quoted as saying the 3-D mammogram saved her life. (I do not know who this woman is and think she is lucky when they caught her breast cancer when they did.) But I have a problem with the 'saving her life' bit.

The article is titled 'New 3-D mammograms could save lives'. Well, I'll put that in the 'duh' category. New medical advances are done to save lives. We know that. This is what sustains medical research - the chance to save lives, have people live longer, and suffer less.

But somewhere in there the translation to saving her specific life I feel a disconnect. Would she have died if this technology not been invented? By thinking this way, are we setting ourselves up for an unattainable desire for the ultimate medical cure/test/procedure that heals us all? Isn't this thinking 'without this I would be dead' a tad idealistic?

What I am trying to say is that medical advances are wonderful and do save lives. But:

We can't set ourselves up for hoping for the unattainable. We have to live with medical advances as they are and not for how they will be in the future or never. We have to accept that what is standard treatment is what we can expect. We can't expect things that don't exist yet. We would be setting ourselves up for disappointment.

I do not credit a single thing with saving my life. What has made me live as long as I have is a bit of common sense (eat right, look both ways before crossing the street, wearing my seat belt, etc.), exercising, getting appropriate medical are (annual physicals, dentists, eye doctors, etc), and even remembering to take my vitamins. I can't think of a single thing that 'saved my life'. My cancers were both caught through regular medical exams - throat check after repeated cases of strep and an annual mammogram. Did they save my life? I don't give them credit.

Going in style

2011-11-19T06:19:00.001-05:00

We all want to go in style - none of this sitting on a nursing home porch with drool running down your chin for seven years, but to be the one sliding to a stop with a drink in one hand and a tan left from a tropical vacation - saying 'yee-haw, that was fun'. Unfortunately life doesn't always let us do that. As a second best effort, we can make out a living will that tells what we want. (What am I on a morbid kick? No. And I have no plans on going anytime soon, but I could get hit by a bus tomorrow. I call it being practical.)

A few weeks ago, when I was passing through the hospital lobby on the way to an appointment (what a novel experience, it hadn't happened for at least a couple days), there was a group of nurses sitting at a table distributing information and answering questions on living wills and health care proxies. I have been asked about these a few times by my doctors - they just want one in my medical file. (But where are they going to keep a piece of paper in their electronic records system - it sound likes it defeats the purpose.)

I did fill one out once and get it witnessed and its someplace around here. The one question I did ask the nurses is once you make out your living will, what are you supposed to do with it once you have it? The answer is - keep the original, give a copy to your doctor, and give copies to those you designate to be decision makers. That was helpful.

But I digress. I like the idea of having a living will. I like the idea of having a plan - I am a planner, ask my husband, it drives him crazy. I think I want to plan a big bash when I am going. It will be before I go because I want to be there. You can have another one after I am gone if you want, but I want one last bash.

More than that, I want to plan my going. Through my job at the cancer support center where they have an Advanced Cancer Support Group, I have learned about a program called Aging With Dignity, where you fill out a form called Five Wishes. In this you answer these five questions:

1. The person I want to make medical decisions for me when I can't.
2. The kind of medical treatment I want or don't want.
3. How comfortable I want to be.
4. How I want people to treatment.
5. What I want my loved ones to know.

Not only does it ask the questions, it helps you answer the questions as well. It includes medical, spiritual, emotional, and personal issues. And it is accepted as a living will in many states. And it tells you how to make changes at a later date, etc. Its very practical. It involves planning - I like that (even if its only to drive my husband crazy).

An ounce of prevention beats a pound of cure

2011-11-18T06:12:00.001-05:00

We get our flu shots and other lovely injections to prevent 'bad' things. Now 'they' (as in the big mysterious them a/k/a big brother) tell us that Tamoxifen and aromatase inhibitors can help prevent breast cancer in women who are high risk. And if you take a pill for five years you get another 15 years, 20 years total, of 50% or more risk reduction. Now that is pretty good news I'll say. If I could have prevented my breast cancer, I would have. But I was basically at a normal risk level so I wasn't a candidate

But the article adds that there are risks of side effects from the medications. Tamoxifen can cause uterine cancer or blood clots. Aromatase inhibitors can cause hot flashes, bone loss, muscle cramps and other little fun things. Side effects are side effects. I do not think they are a reason to stay away from a medication. First of all not every one gets them. If they did, the drugs would be off the market. If you have to deal with hot flashes for five years but then significantly reduce your risk of cancer for another 15, I'll take hot flashes over cancer any day. If one drug does not work for you, there are often substitutes that can be made. And if you are on the medications you will be well monitored.

My take on drugs that are recommended to me is that I will try them and if I can't cope with the side effects or don't like how I feel, I go back to my doctor and ask for a dose adjustment or a substitute medication. A medication is taken for a purpose and which is the lesser of two evils - the side effects or the original ailment?

A pound of cure for breast cancer often includes chemotherapy as well as radiation and surgery. Surgery leaves scars. Radiation can leave skin and other issues. Chemotherapy can leave blood issues, and chemo brain. Now that it has been documented by Fox News, we can confirm that chemotherapy causes chemo brain. So not only do you get to be on the cancer roller coaster for life but you lose some of your marbles, a/k/a brain cells, during treatment. But my chemo brain has created an endless supply of humor for my husband as he laughs at my latest brain freezes, and I'm not even a politician.

I did the exercise, eat right, take care of myself life style, but apparently it wasn't enough. I want a magic pill that prevents everything - or are those called vitamins?

More on insurance rates

2011-11-17T06:36:00.001-05:00

Today's paper tells me that Massachusetts no longer has the highest health insurance rates in the country. In fact it is now down to number 9 on the list. In 2009, the average health care cost for a family was $14,723 and in 2010 it was $14,606. So it actually decreased a tiny bit. Here's how the numbers stack up

2009	2010
1. MA $14,723	1. DC $15,206
2. WI $14,656	2. NH $15,204
3. VT $14,558	3. FL $15,302
4. WY $14,319	4. CT $14,888
5. DC $14,222	5. RI $14,812
6. AK $14,182	6. NY $14,730
7. CT $14,064	7. IL $14,703
8. LA $13,846	8. DE $14,671
9. MD $13,833	9. MA $14,606
10.NH $13822	10. ME $14,576

I actually find the numbers appallingly high. That's a lot of money no matter how you stack it. $15,000/year is $1250/month - a significant amount. Yes employers usually kick in a fair amount of it, but that percentage has been decreasing for many years. I know people now who's employers only kick in 50% leaving the other half to the employee. And we know co-pays are going up. Even for Medicare. There is another article in the paper that says Medicare is increasing the co-pays for some brand name drugs by up to 40%.

Also, the rate of increases are substantial. In 2003, the average family premium in MA was around $9300. "Even if Massachusetts is improving, “health care premiums are still growing at a faster rate than our economy, and they’re growing at a faster rate than our wages, and that’s a problem,’’ said Sarah Iselin, president of the Blue Cross Blue Shield of Massachusetts Foundation."

The question is are these results indicative of the success of the MA state health care program or just a 'blip' in the radar? I hope they are showing success. I would like to note that while some states on this list increased around $1000 from 2009 to 2010, MA didn't increase at all.

Who is getting all this money anyway? They blame costly tests and expensive medical equipment so where does the money go? Are the costs high because the machines are made out of some expensive metal which means the mine owner in some corner of the globe is getting rich? But its still just too much money. We need to figure out more ways to reduce these costs.

And they still want to raise rates

2011-11-16T06:38:00.001-05:00

I live in Massachusetts. We are not that big a state with a population of just over 6.5 million. The largest health insurers have announced their third quarter earnings. They claim they had a good quarter because of 'seasonal improvements' and fewer health claims due to a sluggish economy.
That's a lot of hogwash to me. What are seasonal improvements? I mean I understand that there is less flu in the summer but people are active and they drive more, enjoy potentially dangerous outdoor sports, etc. And fewer claims because of a sluggish economy? People don't go to the doctor when the economy sucks? I can understand delaying your nose job until after you get a job but I'm not sure its covered by insurance anyway. But cancer diagnoses still happen. I do understand that people might be reluctant to go back to the doctor for a follow up and pay another co-pay when they are tight for money but people still get sick.

I like this quote from the article: "Blue Cross said it was pressing forward with its campaign for health care affordability, both by managing its own administrative expenses and by holding down reimbursement increases for doctors and hospitals." Hmmmm.... So BCBS is getting rich but hospitals and medical professionals are barely making ends meet. I like the idea that insurance companies are working on their own administrative expenses but dislike their reimbursement reductions. Insurance companies should not be making medical decisions.

Anyway, on to the numbers. Remember the state population of 6.5 million:

Blue Cross Blue Shield of MA - earnings of $78.9 million, up from $75.8 million last year
Fallon Community Health of Worcester - earnings of $12 million, up from $7.2 million last year
Tufts Health Plan didn't do as well as the rest - earnings of $52.6 million down from $59 million last year
Harvard Pilgrim Health Care also didn't do as well - earnings of $37.9 million down from $44.5 million last year

Total for third quarter earnings this year are $181.4 million, against last year's $186.5 million. So maybe they weren't quite as good as last year but they still made money. And they want to raise rates. I am not sure the exact numbers and think they are slightly lower than previous trends but they are still substantially higher than the cost of living increases most of us see in our paychecks.

I am in the 1.3%

2011-11-15T05:48:00.001-05:00

I found this breast cancer risk assessment tool online. I took it based on me before my diagnosis and I was considered as having a 1.3% chance of getting breast cancer, vs. a norm of 1%. I took it again, based on my current age and pretended I didn't have breast cancer, and I would also have a 1.3% chance of getting breast cancer vs. a norm of 1.3%.

I then tried taking it and answering the first question and said I previously had a breast cancer diagnosis and the tool could not compute as it is not designed for those with a cancer diagnosis. We are in a special group, we are off the charts.

Then I started plugging in the information for friends and family members to see the impact of my diagnosis on them. I was surprised how much of a difference it made. Because of my diagnosis, their risk has increased by at least 50%. Go check it out and see how you can figure out your risk and everyone you know. Its kind of interesting to see how little factors have impact.

Yes I do know there are all those other little pesky factors that must have put me in that 1.3% instead of the 98.7%. Obviously I drank too much, smoked too much, ate too much fried food, used too much plastic, played in contaminated swamp lands, didn't take vitamins, etc. that put me in the wrong group. Grr.

Promising research

2011-11-14T06:21:00.001-05:00

A few weeks ago I went to a conference and Dr Susan Love spoke about the latest in cancer treatment and research. One area she talked about, that I didn't explain well in my other post, was that one area of research is to look at what is in a cell's neighborhood that causes it to turn cancerous. The theory is, according to my tiny, non medical brain, that there must be something about the area a tumor is in that allowed it to grow instead of just remain a bunch of normal cells.

Now there is an article on current research on the cancer cells' neighborhood. If you think about it, it is fairly logical. I mean put a person in a tough neighborhood that lives on guns, gangs and drugs, and what are the chances they will not be touched by the bad influences? Its the same theory with the cancer cells - what are the bad influences that turn the cell into a cancer cell?

This picture explains it in better detail (and its prettier than a lot more text):

Also as part of the conference one of the doctors, who is head of the radiation oncology department, spoke about how important it is to treat not just the area of the tumor but a centimeter or so around it, but not much more than that. Treatment is becoming much more targeted.

I look forward to future research that expands on this new knowledge. Cancer research has been going for a long time but this is now looking like a new direction which might be promising. But I am getting kind of sick of waiting...

Make a list

2011-11-13T07:27:00.001-05:00

When I was first diagnosed with breast cancer, I joined a support group at the hospital for newly diagnosed women. It was our introductory support group and we met weekly for seven or eight weeks covering different topics of life with breast cancer. Of that original group, there are five of us who still get together for coffee periodically. One of the members of the group was actually on her second breast cancer diagnosis. Then she had a recurrence a couple of years ago. Then we found out she died in mid-October. We didn't know. We were appalled. We never got to say good bye. We would communicate primarily by email. She used her work email address. She retired finally this summer. We think her husband didn't know how to get hold of us.

I spoke to another member of the group about this. She said she immediately turned to her husband and said 'don't forget to tell my friends if anything happens to me'. He wanted a list of who to contact.

We used to joke about my grandmother's 'in-case-of-death' envelope. She would write notes and put them in the envelope of things she wanted done upon her death - who to notify, her services, where things were, etc. If you do this for 20 years, you need to update it periodically. But when she did finally die at 96, we knew what she wanted.

I'm not planning on going anywhere soon but I will make a list too.

We left life behind

2011-11-12T17:20:00.001-05:00

My husband and I took advantage of a long weekend to go away and pretend life is perfect for a couple of days.What this means is we took a mini vacation and ignored life's problems. We had an ocean front room on the beach and could watch the tide go in and out, the waves, the birds, the sunrise, the full moon over the ocean. We walked on the beach, found little bits of sea glass, and climbed on the breakwater. We ate unhealthy food (read 'fried clams') and watched stupid TV, read books, went shopping, and enjoy ourselves.

I did try to pretend I was a healthy person - silly me. That was stupid. I pretended that I could walk and go shopping. I paid the price for it - hello pain patches, pain pills, and ice packs. It didn't help that our lovely ocean front room had saggy beds so my back hurt even more.

Now that we are back we have found out that the world went on with out us. Mail piled up, the cat is very irritated - even though we got someone to feed him, and the house cleaning fairy forgot to stop by and clean the house while we were gone. But we decided we need to get away more often. A mini vacation from life and responsibilities was great. We will do this again.

So where do I fit in?

2011-11-10T09:15:00.000-05:00

I whine about chemo brain and lack of brain cells overall. Apparently now I am doomed. After age 50, your brain starts to shrink. So where does that leave me?

There are things you can do to reduce risk of memory loss.

- Dance - its social and exercise. It makes you interact with people and you get physically fit.
- Exercise - it grows your brain. Who knew you could reduce your waistline and increase your brain size simultaneously. This takes multi-tasking to a new level.
- Start young - I've been fairly athletic my whole life and my mother used to feed us lots of vegetables and tofu. We still eat lots of vegetables to my husband's dismay.
- Eat right - I usually do. 3 meals a day, minimal snacking, lots of home made, very little prepackaged.

Well I don't dance... I think I no longer have the coordination. But I do exercise, I have been fairly athletic my who life. I don't eat prepared food. I think I did got to a fast food restaurant this year while traveling but think we ate semi healthily.

But my problem is I am starting with lack of brain cells already. So where do I fit in if I am starting from last place? Examples of my lack of brain cells in recent days are:

- I spent two days looking for the damn spray bottle so I could work on blocking some knitting. I couldn't find it ANYWHERE. I looked all over the house. I asked my husband. I couldn't find it. I gave up and bought a new one on the way home from work last night. 15 minutes after I got home I found it on the kitchen counter, tucked into the corner right in front of me.

- I got to the gym the other day with a pair of sneakers to work out in. I had two rights, from different pairs.

- I ordered something online recently. It showed up yesterday. I stood there and stared at the package. What did I order? I couldn't remember. Was it a mail bomb? I had no idea. Then I opened it and realized I had ordered it.

Need more examples? I can go on. These are daily ocurences.Feel free to ask my husband. He finds my lack of brain cells extremely humorous.

Screening tests - good or bad

2011-11-09T06:38:00.000-05:00

Screening tests have come a long way in recent decades. Mammograms, as an example, were virtually unknown in the 1970's and started being suggested as a way to detect breast cancer by 1980. Then they became recommended annually. Then digital technology came along so they could detect even smaller and smaller cancers. And the rate of false positives went up - causing unwanted stress and unneeded biopsies.

Now we are at a point were tests are so good they are finding small benign 'nothings' or very early stage cancers that are so slow growing, they would never be an issue.

Using this chart, you can see the risks of getting or dying from some cancers:

We talk about the tests, screenings, and costs. But if you look at the numbers, what are the chances you are going to die from it anyway? So where do you draw the line on what you test for and what you ignore? Is it really worth it to have that every ten year colonoscopy if you have no other risk factors - like family members with the colon cancer? Your risk of being diagnosed in the next 20 years, at age 40 is less than 1%. As the article states, "The average woman has a 3 percent lifetime risk of dying of breast cancer, a low risk for a disease that women find so scary. But the chances of getting breast cancer do gradually increase with age and other circumstances."

I am not suggesting that we stop screening tests. I am diligent about getting them as suggested - with my medical history wouldn't you? But they are worthy of another look. The biggest killer in the US is heart disease. How do we test for that? We start with pulse and blood pressure readings which are quick and easy and can be repeated at minimal expense. But the costs of a mammogram, CT scan for lung cancer, or colonoscopy are more significant - both financially and emotionally when you add in the stress of colonoscopy prep, false positives, and unneeded biopsies.

I met a woman recently who had cancer. She said she would be out of touch for a few days as she was going to have a week of screening tests. We talked about them briefly. She said she wasn't really concerned about them but that they do induce either scanxiety or scanphobia in those who have to go through them. That little clench in your gut each time you drive to the hospital for yet another one - they really start to add up over time.

How can we take care of ourselves and catch 'bad things' as early as possible? Maybe we go back to eating right, exercise, maintain a healthy weight, blah, blah, blah (where have I heard this before?). I don't know. I just get to go to the doctor all the time.

More on 'owning' the genetic test

2011-11-08T06:32:00.001-05:00

The other day I blogged about 'owning' the genetic breast cancer test. Now there is new outrage against Myriad Labs. They have developed another test, called the BART test, that can pick up further cancers and reduce risk additionally:

I completely agree with this argument. Myriad Labs is in the wrong here. But I do have a few comments:

- How the hell (pardon my language but its worthy here) did they get to 'own' the breast cancer gene? I have genes in my body - are we going to start selling them off to the highest bidder? This adds a really creepy touch to the Big Brother concept. This is the part that really gets me. I understand the basics of patent law but do not consider myself in anyway an expert. I just don't understand why they now own the gene. Maybe they own the test. But they certainly should not own a gene. Maybe this article has it slightly wrong. If they don't, we clearly need to have our laws catch up with genetic testing abilities.

- If you get the BRCA test, I think your insurance covers it. But now that this next test exists and it is a medical genetic test, shouldn't there be insurance coverage for it? Well, maybe not necessarily covered by insurance (insurance can't cover everything and this is actually for a small population but that's another discussion - perhaps tomorrow if I remember with my tiny chemobrain), but at a lower cost. $700 for a lab test that is done over and over again is a bit outrageous. From a business point of view, if your costs are that high that you can justify a $700 customer fee, you need to look at business efficiencies and cost reductions to be more competitive. Oh that's right, they own the gene so they don't need to compete.

- Why is the lab tech upselling the additional test? Are we going to start seeing sales people in the waiting rooms upselling additional tests? 'Excuse me, would you like to have a test to see if your grandchildren might have green eyes? It only takes 5 minutes.' Yeah, right.

- Genetic testing is optional and not required. Some people want it and some people don't - they simply don't want to know if they are more likely to get a specific ailment. Its a personal choice. I think the current recommendations are that women with breast cancer in their family get a BRCA test. Some women do, and some don't.

- The other thing about genetic testing is that just because there is cancer or whatever in your family doesn't mean you are going to get it. (Who was that scientist with the pea plants who looked at inherited traits that was part of a biology class decades ago?) You know what I mean. Two brown eyed parents can have blue eyed children even though it is a recessive trait. You can have a history of an ailment in your family but that doesn't mean you will get it. And a genetic abnormality can suddenly appear - you can be the mutant.

Genetics are going to tell us a lot in the future but our laws need to catch up so no one owns a gene or becomes a single source for a test at the risk of patient lives. And individuals still need to be the one to decide if they want a test or not. A technician should not become the sales person for the test. And no one should own my genes.

We don't get a 'do over' for life

2011-11-07T06:26:00.001-05:00

When we are little we want to grow up and be a policeman/fireman/doctor/teacher/nurse/president/astronaut/professional athlete. Then as we get older we want to go live in the woods and become vegetarians/paint on the beach in Tahiti/save the world and have all sorts of idealistic rose colored glasses filled dreams. Maybe next you want to get rich so you can live the easy life in a nice house with nice cars, etc.

At some point you go to college, get a job, date, marry, children, etc. But then life starts to interfere. Maybe you don't get married until later. Or marry a jerk and then marry the right person later on. Or you never get rich. Or you don't get recruited out of college for the team of your dreams. Or you have children and are struggling as a single parent. Or find your college major will not help you get the job of your dreams. Or your health interferes.

At some point you realize your dreams are not all going to come true. You are not living on a beach in Tahiti and you aren't a millionaire. You aren't married with children. Are you filled with regrets? You shouldn't be or you need to learn not to be.

If I had a preference I would not have gotten cancer twice, maybe I would be richer, maybe I would be a size 6, 5'7" physically fit person who never has to work out and could eat chocolate and ice cream three times a day. Yeah, right.

Life is about learning to adapt. We all have a bit of Darwin in us as we learn to roll with the punches.
We do not get a 'do over' for life. We are stuck with how our cards are dealt. We need to learn to roll with the punches to thrive and survive. And still eat chocolate every day.

Time

2011-11-06T06:54:00.002-05:00

The word of the day is 'time', or perhaps it should be 'sleep' or lack of it. This business of changing time twice a year is perplexing. I mean what is the point? All it does for us is mess up our sleep schedules for a few days. I did some research and found out a bunch of details on it:

The whole point of daylight savings time is to maximize the amount of sunlight later in the day and lessen the amount in the morning. It was the rocket scientist idea (did they have rocket scientists them or were politicians just as smart then as they are now) when Congress approved the time zones that the train schedules had been following since the 1880's. Who knew mass transit would force time zones? It is optional now and was only mandatory in 1918 and during WWII - as it is supposed to save power. In 1966 it was introduced nationally but not everyone follows it. It was moved to its current 'optional' schedule in 2005 to save more electricity. But there has since been a study that says it only saves 1% at most. That shows what a smart idea it really was.

Gee that's a lot of interesting factoids but it does not help cope with reality. Since last night was 'fall back' I am supposed to be more rested today as I got an extra hour of sleep. But I slept really badly last night and am up early thanks to the (damn) cat who wants breakfast according to his stomach, not according to the clock. And have you ever tried to train a cat? Today I am not more rested which I can only assume is due to (ever-so) slightly overdoing things yesterday. Tomorrow I will move into crabby.

Tonight my body will say 'stay up until the old bedtime' which means instead of going to bed at 930 or so (I am an early bird) I will want to go to bed at 830 which is the bedtime for 8 year olds. This means I will force myself to stay up later than my body wants. Tomorrow morning I should get up at 530, according to yesterday's time, but that means I will wake up before the alarm. This will cause lack of sleep and I will end up being crabby - too bad I have to go to work all day tomorrow.

Small children and pets do not understand this business of time change. Explain that to any two year old who's nap and bed time are an hour later than they think they shall be. The two year olds turn into space aliens. The pets become annoying.

I will go spend my day looking at clocks and timers and try to figure out if they are on old time or new time. It used to be you had to reset everything, but now with atomic clocks, the internet, and DVRs which display the time, some things automatically reset themselves. And if your spouse goes around changing the time on some things and you do as well, do you actually end with clocks in the old time, the new time, and the 'turned back twice' time? Its as if you were living in three time zones.

I'm not really sure if we are on daylight saving's time or standard time. I never remember which is which. I just know I will be tired, crabby from lack of sleep, and not really sure what time it is for the next few days.

They aren't supposed to run out - they might lose customers

2011-11-05T09:28:00.001-04:00

This has been a growing problem in the past few years that is finally receiving some news. At one point late in 2010 there were more than 150 prescription drugs in short supply in the US. This is not surprising. They are a manufactured item just like a lot of other things. Reasons for this were given as:

- source materials no longer available
- quality issues closed manufacturing plants
- no longer profitable to manufacture

Drug companies as we are aware are businesses looking for profits (well duh!). They are just like any other company. The problem goes back to the long development and approval processes to get new drugs to market - or so they claim.

Now the president is stepping in sign an executive order to: "to help reduce a growing number of prescription drug shortages while protecting patients from possible pharmaceutical industry price gouging."

I wish people could play nice in about this and keep their life saving medications available at all times. To all those people who are wishing for smaller government, can some one please explain why the pharmaceutical industry are all about profits and not about the patients who are actually their customers?

Poor customer service - i.e., shortages - will drive away customers. A doctor isn't going to prescribe something that has availability problems. If I am on a life saving medication and they run out, I may switch or I may die. Either way they lose me a s a customer. Hmmm....so maybe its in the manufacturer's best interests not to have shortages.

Getting a good night's sleep

2011-11-04T06:40:00.000-04:00

A good night's sleep is supposed to be critical to our health, especially when we are ill or recovering from surgery or some other medical adventure. However the worst place to get a good night's sleep is in a hospital. I have had many 'wonderful' hospital stays - some planned and some unplanned. I never get a decent amount of sleep while I am there.

I think I can get more sleep squished into coach on a transatlantic flight full of screaming children - 9 hour Miami to London flight full of more than 120 children (really) while seated right in front of the flight attendants area where they sat and chatted.

Some of my good night's rest in the hospital have included:

Being admitted through the ER and having to wait until 4 am to get to an empty room. The nurse was very nice and asked me very few questions and said she would come back later to finish them so I could get some sleep. Ten minutes after she left, the blood work tech showed up for a blood sample, and then a visit by someone - every 20-30 minutes for the next few hours. The nurse was good - she didn't come back but everyone else did - the call for breakfast food, delivery of breakfast food, maid to sweep floor, someone for vitals, the doctor, etc.

After my hysterectomy, I had expected to recovery for five nights in the lovely hospital. Yes continuous interruptions every night - including the night they insisted on buffing the hall floor outside the patient rooms. You should have heard the nurse read the riot act to the poor man.

When ever I am hospitalized I try to minimize disruptions and noise by keeping my room door shut at all times. It is my prerogative and you bet I am going to use it. When someone walks down the hall, they always seem to glance into every open doorway.... I find it a horrible invasion of privacy. And with a closed door, a lot of the noise is minimized.

So why do they keep us in hospitals these days? Thanks to insurance companies we are kicked out as soon as possible. They are full of germs as well. And they certainly aren't quiet. I am always happy to tell the doctors that I want to go home as soon as possible and I can turn in to a horrible patient when cranky from lack of sleep. I miraculously feel 1000 times better as soon as I can get a good night's sleep.

Put it all in perspective

2011-11-03T06:17:00.004-04:00

Yesterday I blogged/whined about the latest study on breast cancer risk and alcohol consumption and the point that moderate drinking helps prevent heart disease. This of course leads to confusion and rebellion by women with breast cancer. 'Damn it we had cancer, don't take away our wine.'

But a friend, who has a doctorate and works in public health made the point that:

'You are more likely to die of heart disease if you don't drink a few drinks a week - and heart disease is far more prevalent.'

This reminds me we need to keep all these studies (a/k/a attempts to confuse the patients) into perspective. When we hear about these studies, we need to ask a few key questions:

- How many people were involved in this study and over how long a period were they followed?
- How prevalent are the ailments being discussed?
- What is your actual risk of getting the ailment in the first place?

So if the study was done on ten mice and they were followed for one year, how much significance would you give it?

And in this case, heart disease is the number one killer in the US. Breast cancer, while not a minor ailment, is much lower on the list.

Also, there is only so many things I can do/eat/drink/not do/not eat/not drink and retain my sanity. In this case, my perspective is that heart disease is more prevalent and I am opting for the heart disease side of the study. This means I'll drink.

Finally, all these studies tell me that there is so much that is not known about cancer and its causes as they keep coming up with conflicting results.