I Am Entitled To Change My Mind

Most days I blog about what is on my mind and it just sort of  pours out of me. Sometimes its in reaction to something I saw, read, or heard. Sometimes its just what is on my mind. And sometimes I change my mind. Sometimes I read my blog again and think about what I actually wrote.

Yesterday, I blogged about changes I could make and a week ago I blogged about how I am done making lifestyle changes. And I realized I totally changed my mind. But then I realized I didn't. I am ready to make changes that other people tell me to do. And I am ready to make changes that I want to do. I don't want to be told what to do. I am an adult after all. (I realize some people may disagree with this - about being an adult that is.)

I like to make my own decisions about me. And I am kind of sick of doctors telling me what I am supposed to do and needing to know every detail about me. The worse your health is the less privacy and modesty you have. Doctors make all kinds of decisions for you - eat this, not that, let me stick this needle into you, you will only feel a pinch, etc.

So I am done with being told what to do, or have it suggested to me.... I am going to make my own decisions.

Changes I Can Make

My therapist asked me an interesting question the other day - do I eat specific items that could help with my fibromyalgia? I actually thought about it for a minute. (Me, taking other people's advice???? LOL) An email came through my inbox on foods that are beneficial for people with fibromyalgia - I got as far as seeing bananas on the list and I eat one every day.

However that did prompt me to wonder what other changes I could make to my life to help me in some ways. I had thought that once I left my pastry filled job I would lose a few pounds. I did lose a couple pounds but then they reappeared. This indicates to me that I need to rethink my eating habits because the flab is not going to vaporize as I expected.

I am going to think about making some changes to help me feel better - losing weight will help with other health issues. Here's my list of what I want to work on:

- Food and eating habits. Incorporate more 'good' foods and less 'bad' foods. Good foods are ones which may help with fibro and RA as well as lose weight. Lots of whole grains, fresh fruits and veggies and better home made stuff. The problem with me cooking more is I don't have the energy or the stamina to do much more cooking. I'll have to work on this area and figure things out.

- Exercise. I do go to the gym and get an hour of cardio in three times a week. I also then spend another 30 minutes or so doing stretching, free weights, and machines. But I can't go for walks and things like that. Different body parts start hurting once I go too far. I do try to go out and garden and get out in the yard but I want to figure out how can I do more without regretting it. Maybe I should sit down with my physical therapist and get some professional advice.

We already are leaning to the organic, whole food sort of thing so that area is under control. I grew a lot in the garden this year until the drought hit so we didn't get as much food as I thought but this will expand next year. I am not sure what else can I do but I will give it more thought.

I do think I want to explore more changes that I can make to work on this. I think a goal is a good thing and will provide motivation for me.

I Am Done Making Lifestyle Changes

When I was 19 and diagnosed with thyroid cancer, after treatment the doctors told me to stay healthy, take care of myself, eat right and get plenty of rest. Um, great advice. I was in college so it did not exactly fit my lifestyle.

But I did put some deep thought into how I was going to live my life. Having cancer sucks (if you want to disagree with that, please let me know). It was a big wrench in my life. A huge elephant in the room. And one I was not too sure how to approach (there was no social support for cancer people in 1981). However, I decided cancer was not going screw up my life.

I made the decision that I would try to live a healthy life style. I was going to make sure I took care of myself. But I wasn't going to let cancer interfere with my life.

But then cancer decided to show up again nearly 26 years later. I did make some lifestyle changes during chemo. I did change our eating habits to include more fruits and vegetables. I made sure any processed foods were removed from our diet, not that there were that many. I finally quit smoking.

Now, nine years later, I think I am done with altering my lifestyle. I know my primary care doctor is going to tell me to eat more vegetables and stuff like that. But I am done with that.

I enjoy a glass of wine and am not going to stop drinking. I try to get plenty of sleep. I mostly eat right (but some how a bag of potato chips fell into my grocery cart last week). I try to eat plenty of fruits and vegetables. (Potato chips are vegetables aren't they?)

I have enough going on that I am not going to make any more lifestyle changes. I have so may issues right now with my health. I think I have made enough changes. The only way I am making more lifestyle changes if they will cure cancer and get rid of all my other ailments.

Taking the fun out

"Several studies have linked alcohol consumption to a higher risk of many cancers, including breast, mouth, throat, larynx, esophagus, liver, and colon and rectum. The risk rises with the amount of alcohol consumed."

Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.

The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.

My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?

When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.

I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.

I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.

The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.

If you were told you were at high risk of getting cancer, what would you do?

So genomics is progressing. The newest research shows that through genomics they can account for the causes of 50% of breast cancer cases. They also state that if you are at high risk, you can lower your risk by maintaining a healthy lifestyle - good weight, not smoking etc.

"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."

"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."

So those statements beg a few questions.

1. What would you do if you were told if you were at high risk of getting breast or any other kind of cancer?
2. Does the high risk seem as much of a concern if you can lower it by maintaining a healthy lifestyle?

Other research has talked about what you do at a younger age can impact your cancer risk later. But do teenagers really care about healthy lifestyles? The teenagers I know often eat a lot of junk food, drink soda and other sugary drinks, and are not as concerned with getting a healthy meal three times a day. Then twenty-somethings seem to switch to some healthier habits as they mature and settle down. College is a big time for alcohol consumption and other risky behaviors. In recent decades the rates of teen smoking are way down. I know these statements are generalizations and there are exceptions but I am using them to make a point.


So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle?  Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?


My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.

When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.

I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.

The Pessimistic Side of Curing Cancer

Two blog posts caught my eye this week on the problems with finding a cure for cancer. There is lots of hoohaa going on with we can cure cancer. There is even the deadline(?) of 2020 to find a cure for breast cancer. But here is a look at the other side of finding a cure for cancer.

The first article is on "Coming Together to Fight Cancer" that lists the five issues involved:

1. Cancer is not one disease. Its many diseases. 
2. There is a lot of effort going into treatment - chemotherapy, surgery, and radiation. Those are not cures. And a lot of the diagnostic advances (CT/PET scans) are also cancer causing tools.
3. Modern life styles are contributing to cancer rate increases - 10 fold in the last century.
4. There is not a lot of political will behind it. Politicians only care about the things that get them votes. They may say they support curing cancer, but is there budgetary support behind those words?
5. Apathy. Those touched by cancer range from rabidly vigilant to fairly laid back on their stance on finding a cure for cancer. But the lack of action prevails.

The next article refers to cancer as "An Unstoppable Killer: New Research Shows Cancer Cant Be Eradicated". Think of it this way. Cancer cells have been known to form going back millennia on the simplest of beings. So if they form on very simple organisms, could they be part of the intrinsic basis of life? If so, can we cure cancer without destroying some of the very basics of life? There is a lot more detail in the article itself so please read it.

Now all that being said, what can we do if we can't eradicate cancer? We can help lower the rates of cancer by returning to simpler lifestyles without chemicals, synthetic food made of chemicals, no tobacco use, more exercise, etc.

What if we tried that? In Australia, there used to be soaring rates of skin cancer. Now there has been a dramatic decline. Why? They started promoting sun screen use, put shades over public pools, encourage people to wear hats etc. That doesn't sound hard does it? A few little changes can make a big difference.

Remember the big hole in the ozone? With the decline in use of aerosols and pollution reductions with the Clean Air Act, the ozone hole is in showing signs of repair.(I read it somewhere this week but of course I cant find it now.)

So lifestyle changes may be able to help decrease cancer rates. If we can't cure it, maybe we need to focus  on decreasing its presence.
So instead of spending billions on expensive medications that might extend a patients life by up to six months, what if those billions were spent on promoting healthier lifestyles and

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...

Leading by example

You know when you go to your doctor and they tell you to eat a healthy diet and you stop at the cafeteria for lunch before your next appointment and they offer fried chicken and fries with a danish for dessert. Well now that is starting to change. The newest trend for hospitals is to become healthier themselves.

No more Dunkin Donuts in the hospital lobby for one. No more fried anything for most. This is part of a new initiative started in 2012 nationally to make hospitals healthier instead of contributing to chronic illness through unhealthy food options. This includes reducing red meat consumption and providing more vegetarian and fish options. Hospitals are also encouraged to try to source food locally. Some have even started rooftop gardens.

In addition, hospitals are taking steps to reduce waste, use of toxic chemicals, more efficient heating and cooling systems, safer chemicals in cleaning products, and increased recycling efforts.

I am very happy to hear this as this is a trend toward 'practicing what they preach' instead of 'do as I say, not as I do'.

I have noticed this at the local hospital where I go. They provide water stations through out the building where patients, visitors and staff can refill water bottles or provided paper cups. Recycling bins are evident. Food choices are leaning toward healthier choices and the cafeteria salad bar has expanded greatly. I had a yummy salad there the other day which was full of sunflower seeds and other healthy options.

This should be the way of the future. I would hope to see all these efforts visible at hospitals nationally and at other commercial and industrial buildings.

Participating in the post cancer life without criticism

Yes we must participate in our lives post cancer. We need to do the right things in order to stay healthy and help reduce the chance of recurrence. The best things we can do are the things that all adults should do - they simply become more important:

• eat right
• maintain a healthy weight
• exercise
• reduce/avoid alcohol consumption

But as an additional stressor, we tie in the emotional impact of our cancer diagnosis.

Dr Bechold, here, writes about life post cancer as not a passive sport. I agree with her points but disagree with her tone. First of all, clearly although she has been a doctor for 30 years, she clearly has never been diagnosed with cancer herself. Back to if you haven't walked the walk, you can't talk the talk.

Second of all, she seems to blame the patients for their non compliance with recommendations for exercise, healthy lifestyle, and recurrence risk reduction.

"You can’t see that breast cancer survivor every 3 to 6 months, watch her weight balloon up, and not ask her what is causing this to happen. We must take time to talk to people and ask about their lives and how they are living each day with an eye on remaining cancer free. I had one patient who was clearly having some anxiety issues. As we talked, I found out that she was self-medicating every evening with a bottle of wine. While she graded papers! After I picked my chin up off the floor, I advised her that this was not an acceptable coping mechanism."

Hmm... so back to the patient whose weight was ballooning up. Did she ask about weight gain caused by Tamoxifen or aromatase inhibitors or chemotherapy or just plain emotional stress? Maybe what we used to eat and maintain a healthy weight, now makes us gain weight? I know I have tried to eat healthy and my weight has definitely increased. I go to the gym regularly but my medications cause weight gain and my other ailments have reduced my ability to move around. I know many other cancer patients who deal with similar issues.

And to the patient who self medicates with a bottle of wine - clearly a destructive behavior - but why was she so astonished? If the patient had anxiety issues, why hadn't other interventions been taken previously such as therapy?

Finally, I am somewhat appalled by this closing paragraph:

"No more excuses. No more “I don’t have time,” or “It’s too cold out,” or “I know I should, but…” It has to be done. Just like getting up every morning and going to your job—no-shows are fired! If you don’t buy gas for your car, it will not run. If you do not buy food, you will be hungry. There are just things you have to do. Compliance is required for a pill or a lifestyle and failure to comply will compromise the outcome. No matter how many tests we order."

From the point of view of a relatively healthy, active doctor, who looks fairly thin in her picture, without a cancer diagnosis under her belt, I am sure she thinks its easy. But she needs to walk a mile in hour shoes before she can criticize us. I am just glad she is not my doctor.