About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

Being an elephant....

Or more on perceptions vs. reality. I talk about losing weight and my deflabbification project but it never seems to work. I have decided my job is very fattening. I sit next to the kitchen and then people bring in nasty things like donuts and cookies... or even make special trips to the bakery next door to get more when the homemade stuff is run out or they just want a sweet thing. And of course they get enough to share. Then there is the snack rack where for 90 paltry pennies you can get a bag of premade, chemical and fat filled, empty calories of your choice. All within 8' of my desk and in my sightlines. As well as the parade of coworkers going by for their share. So I decided I look and feel like this:

Or this:

Last week at the reunion, I was talking to a social worker friend about this (who is less than 5' tall and weighs less than 90 lbs) about how I feel fat and I hate the way I look in pictures. Her calm reply was that we all feel that way. It did help but I still feel fat. I know my downfalls - emotional eating, late night snacking after dinner, on the job snacking and I have promised myself I need to do something about this before I have to buy larger clothes yet again. But I do feel very sorry for this elephant that is on a strict diet to lose 500 lbs during pregnancy no less.

Supplements and Dr Oz and other medical inspirationalists

The decline of the TV doctor....Or more specifically false advertising of miracle treatments...


Dr Oz and others have gotten rich by using 'flowery language' to promote supplements for weight loss. Green coffee extract? Didn't Oprah make him famous in the first place? That's another show for medical information... Dr Oz is currently spending his days at the US Senate defending his language and promotion of supplements that do exactly nothing and making scam arts rich.

The problem with these fad supplements are several:

• Supplements are not tested and approved by the FDA and can contain toxic ingredients and can interact with prescription medication. The message here is do not use them without talking to your doctor.
• Scammers and others quickly hop on the bandwagon and get rich off the people who believe in what they see on TV.

"Just because you see a supplement product on a store shelf does NOT mean it is safe or effective," the FDA website says. "When safety issues are suspected, FDA must investigate and, when warranted, take steps to have the product removed from the market. However, it is much easier for a firm to get a product on the market than it is for FDA to take a product off the market."

While Dr Oz is grilled in Washington, we just need to remember what we have been told previously. Don't believe what  you see on TV or read online.

Perception vs reality

I have always had a fair amount of faith in the UK's NHS for taking care of patients. I know it has its pitfalls and snags and that there can be substantial waits for appointments. I really only know the basics on the rest of Europe's national plans. I have always assumed that these well regarded healthcare systems and thought they provided relatively equal and good levels of care with the only variations really based on their financial wealth of each nation.

So I assumed that the UK was providing a fairly high level of care as it is one of the more 'wealthy' nations in the EU. It turns out I am wrong and so are 75% of Brits regarding breast cancer survival. In the UK apparently breast cancer survival rates are among the worst in Europe.  The five year survival rate for breast cancer survival in the UK is 79%, the European average is 82% and France is 86%. In the US its 89.2%.

This brings up two issues to me. First of all it is clear that the UK's NHS is not doing everything right. Second of all, most people receiving NHS are not aware of the issues. So we have a system which isn't working right and the majority of the people who use the system are not aware of this fact. This also reinforces the fact that users of a system need to be aware of its strengths and weaknesses and then take action to help reform the system and to maximize the care the receive.

There is a broad gap between perception and reality.

No flowers today, just a picture of the cat.

Surprising people

As I have mentioned before, I go to an amazing gym for dilapidated people. Its a combination of PT and a gym and is full of people with ailments. I see people there daily in wheel chairs, on oxygen, and wearing various types of splints and braces. I know most of the people who go there have medical issues and greatly benefit from the additional support, like me.

When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.

I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.

We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".

I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"

But I am a little sore after my new routine but I will be back tomorrow.

On the hunt for healthy food

I traveled home yesterday from the wilds of Wisconsin back to Boston. It was a long day as travel is not the best activity for me. My back hurt to sum it up. We had a two hour drive back to the airport (O'Hare), had to return a rental car and didn't really know where we were going. The weather forecast was also for potential severe thunderstorms....

Our plan (pushed later than originally reserved) left at 645 pm. We wanted to get there two hours prior to allow for car rental return chaos, plus two hours for driving, plus extra time to pad for weekend return traffic. We got to the damn airport at 3pm. No traffic, no car rental return hassles. We had plenty of time.

I was with a friend from college. We took turns sitting with luggage and looking for healthy food options to eat either before or on the plane. Finally she found a build your own salad place. I found a Mediterranean place which had a salad with grilled chicken, a few slivered almonds, and some Gorgonzola on a large bed of lettuce. It looked perfect until I looked at the nutritional information - it was listed as having some where around 640 calories and 55 grams of fat. My jaw dropped. I showed it to another woman who was also looking at food choices. She was equally appalled. Then we decided it must be because of the huge (3.25 oz) container of salad dressing.

We checked another item - a sandwich of turkey, brie cheese and red peppers I think - and it had 630 calories and 70 grams of fat.... I'm not even sure that's possible because there are 9 calories in every gram of fat or something like that. I think. I'm not completley sure.

But either the labels were wrong some how. Or the food was just not good for you.

I ate my salad without dressing and it was just fine. But I really hate travel food. Today I am going to the grocery store and I think we will have some salmon for dinner with a salad and maybe some Israeli couscous on the side. That will be much better.

Red meat, too? Really?

No more steak??? Bummer. Not that we eat that much red meat but I can appreciate a really good steak and sometimes a juicy burger. But really? Living under a rock doesn't work either because of radon as someone commented here recently.

So how much do all these cancer risk factors really matter after all. We have the things we can't affect for any ailment. In the case of beast cancer, we have things we can't change like genetics, family history, child birth, aging, dense breasts, etc. Then there are the things we supposedly can change such as obesity, alcohol use, tobacco (a whole other kettle of fish, so to say in the cancer world), exercise, steak (now), breathing, BPA, blah, blah, blah... but if we have all the primary risk factors we can't change, how much can our diets and lifestyles really make a difference?

Yes we cab be healthier and make better choices for our bodies, but if the main factors can't be changed how much does it matter if we do? And the statistics can be hard to decipher.

Red meat consumption can raise a risk factor I think 13% for each serving per week. That doesn't mean that if your risk is 10% over your lifetime of getting breast cancer, it doesn't mean that a steak a week puts you at 23%,  or 11.3% etc., it probably means 10.13%, if that much.

I am ready to give up on all this risk factor business now because I can't figure out where I can hide from it all either...