What is the new normal?

After cancer, they tell you that you will have to reach a new normal, you aren't going back to the way you were. What was normal for you before is not going to be normal any more. You body has been subjected to one or more surgeries. Maybe some radiation and chemotherapy. You may have less energy than before too.

Your stress level went through the roof. You are now living in the land of 'what if it comes back'. Which is a little stressful in itself. You have many more doctor appointments that before and each one has its accompanying stress pull. For the past three years, I have had more than 60 appointments each year.

Physically you are not the same either. You probably have a new hair style as your hair grows out of its chemo-cut. Weight gain is not that unusual either. New aches and pains are not uncommon as chemo has some fun side effects. And the surgical scars...

You are trying to balance all the advice and suggestions. Eat healthier. Eat lots of plants. Eat soy, no don't eat soy, eat soy, no don't. You try to exercise more. You cut out all the things you like - alcohol, chocolate, dessert, fast food. All are steps to prevent the r-word (recurrence) - you are doing everything you can to prevent it - but is that enough? Is anything enough?

So what is the new normal? I'm not entirely sure. First I need to add that in my case, I have had several other medical issues of the non-malignant kind since the end of my cancer treatment - gall bladder surgery, bad back, ugly thyroid ultrasound, touch of lymphedema, etc. My back is an ever worsening adventure which has no cure, just lots of pain. Also, my husband had his own fun little cancer adventure last winter which added to my stress level.

However, somehow over recent months I feel my life has settled down to a level where I can cope for the most part. It helps that now I seem to go to the doctor once or twice a month instead of once or twice a month. It may be partly due to the medication I am on but I'm okay with that. If the medication is what it takes to reach a new normal, I can deal. Does it mean I need to take it for a long time? Possibly. But I also take back and thyroid medication for life. A friend of mine phrased it as 'better living through chemistry'.

Is this normal? I am not sure but its liveable and that's the important part.

Its not about the jobs

In case you have been sleeping for the past decade, there has been a big controversy over stem cell research - particularly that using embryonic stem cells. Its been a bit of a roller coaster - yes it can be federally funded, no it cant, yes it can, no it cant... and now its waiting on a Supreme Court decision.

The research itself does get into some ground breaking stuff - diabetes, cancer, etc. Its also expensive - $200 million this year alone. But apparently the scientists doing the research are worrying about their jobs. Well yes that is a concern. Anyone's job can just go away. There are no guarantees for any job these days.

A few thoughts here:

Isn't the idea that ground breaking research might be put on hold a bit more disconcerting than the fact that 1300 people might have to find new jobs? No one wants to lose their job but let's not lose sight of the fact that the research might be more important than the jobs?

Why is it a given that the federal government should fund this research? Regardless of the embryonic or other stem cells issue, is the federal government supposed to fund this? I am sure the government funds all sorts of things but who thinks they are required to fund this in the first place? What if they had to get other funding like a lot of other research does?

I am not questioning the right or wrong about the research. But is the government supposed to fund research? Why are they supposed to fund it - because they always did? Even if the Supreme Court allows it, what if the budget didn't have room for to fund it?

I don't know but I think something is a little out of whack here. Its not about jobs. Its about research and breakthroughs. Its about coping with change if needed.

I wouldn't be worried about my job. I would be more worried if research was derailed. Even if they get funding, from whatever source, they could still lose their job.

How to lose weight

Now there's a headline which I am sure garnered either a second look or a sigh of 'not another pile of crap'. Well I actually like this list so I am going to write about how to lose weight. But first the news this morning tells us that the best way to lose weight is to get a good night's sleep. Not sure what one has to do with another but I'll keep listening to the news until I find out - maybe it will be before I finish this post in which case I'll tell you why.

The real reason I'm writing is about this new list of how to lose weight.

1. Ditch your scale. It is merely a tool to drive you crazy. Your weight goes up by one pound and you get depressed. Your weight goes down one pound and you eat a pizza. Then you repeat the cycle. I will stop weighing myself.

2. To get in shape you need to do cardio, strength training, AND flexibility training. Well this is not me. I will continue to go for a walk every day but the strength and flexibility issues are a problem due to my back.

3. What you eat is important. Just because you are dieting doesn't mean you need to go hungry. Eat real food and good fats to keep you feeling full.

4. Skip the quick diets and fads. (The same goes true for the get rich schemes and the promise of a cure for cancer.) Anything that takes pounds off fast will put them back on right away.

5. Apparently you will miss the old you. You got fat because you ate chocolate cake every night. You might miss that. Pay attention.

I think there are more articles on weight control than on cancer on the internet. Also this morning I have learned that fat grows differently on different parts of the body - this is important because it is some kind of breakthrough. (I need coffee to compute all this.) And if you are fat, you can't remember anything - so can I claim being fat and having chemo brain for being a spaceshot? Finally, if you are tired, you feel hungrier so get more sleep. This is another reason why we need a good night's sleep regularly.

I need to get moving and take a shower - I promise not to weigh myself this morning like I often do. Then I will make us healthy lunches to take with us.

Bullying, bigotry, and other bias

Last week a Rutgers college student committed suicide after his homosexuality was outed on the internet by his roommate and another student. Where they trying to be cool or something by secretly filming him and posting the video more than once on the internet? What were they trying to prove other than the fact that they are insensitive idiots?

Two issues here: First someone's sexual orientation is their issue and not anyone else's. I don't really care what someone's preferences are. Why should I? Their personal decisions don't really impact me.

Also, I do care about not seeing other people's sexual interactions. That is a private activity meant for privacy.

So what was the point here? I do think the actions of these two should be charged under hate crimes and that they get good long sentences for their insensitivity. Some may argue that they will ruin their lives. But they caused another person to decide they made his life not worth living.

This is another example of the bullying that has become so news worthy in recent years. Bullying is all about bigotry and bias. "I'm cooler than you" mentality.

But seriously we are all different. Some short, tall, fat, thin, white, black, Asian, Ukrainian, Swedish, Flemish, Lao, or any number of ancestries, Catholic, Jewish, atheist, Muslim. Why is one better than the other? We should accept our differences in that they are what makes the world and interesting place where we allow our differences to complement each other instead of allow them to create hate, fear, and bullies.

Show them the money

The price of prescription medications are appalling. I am sure drug companies do what all other manufacturers do in any areas - they have product managers who do research and look at costs and what the market will bear and set the prices.

I look at my prescriptions. I personally take six prescriptions daily with another three for as needed. Of them, four are available in brand name only. This means they are newer drugs for which a generic has not yet been developed. Their copays make me cringe. Never mind their full price.

I understand that it takes lots of development work to get one drug to market. Of hundreds that are worked on to one degree or another over years and years, a single drug final makes it through approval to market. The drug companies have to try to recoup some of the expenses for all the others which didn't make it.

The laws were changed a few years ago to prevent drug companies from paying doctors to prescribe their drugs - in anyway. No more freebies - which included everything from a ball point pen to a well padded savings account.

But then why are stories still surfacing of doctors being paid to prescribe or to put their name to ghost written articles to give credence to the drugs? A doctor should prescribe what is medically necessary only. By state law here, the pharmacy must fill a prescription with the generic where available unless the doctor writes in 'no substitution' - generics are close but not exact.

Finally, state AGs are suing drug companies over their huge profits. If they are making such hugs amounts of money that their annual reports show, this is money that belongs to the insurance companies and the patients who pay them. This belongs back to the people who are trying decide which bill to pay - the health insurance premium which is inflated due to high prescription costs, the prescriptions themselves, the mortgage, or the grocery bill.

As I babble away about clinical trials needing change, this is another area which bears a closer look.

Pay for performance

Pay for performance is a good idea. Right? I mean you do a job and they pay you. You do a job perfectly and they pay you more. How does that sound? It makes sense.

But what about paying doctors for their performance? Well the problem is that its paying doctors for their performance with patients. So its not just the doctors that should be paid but perhaps the patients as well.

Seriously, what if your health premiums were lower if you went for annual check ups and preventive tests such as mammograms and colonoscopies as scheduled? Also, if you had a condition, if you actually went for treatment as prescribed by your doctor?

I think that people with health conditions which require monitoring - anything from diabetes and heart conditions to post surgical follow up - it is up to them to get the treatment prescribed. If the doctor wants to follow up six weeks after surgery, go to the appointment so you don't end up in the emergency room because something that didn't heal quite right caused other problems. This should also include lifestyle changes to an extent. If a doctor says, you are going to develop diabetes or have a heart attack unless you eat healthier, get exercise, and lose some weight, you need to make an effort there as well.

Basically, it takes two to tango. The doctor needs to do their job and the patient needs to theirs as well. Maybe because human beings react positively to payment, money needs to be added to the mix. But then isn't money the root of all evil?

I am braced for Pinktober

Here it is again. October used to be full of hay rides, apple picking, Halloween costumes, and more outside fun things in the crisp cool days. But now it has been replaced by Pinktober where we will be flooded by all things pink. Here is a list of a few things I have already seen:

- A book display of a bunch of novels where all were issued with pink ribbons on the covers and and some unknown percent of their proceeds will be donated to breast cancer research.

- An (little bitty) ad for a dress at Macy's where they will donate 5% of the (undisclosed) sale price of the dress to the Breast Cancer Research Foundation - I don't know who this organization is. I looked it up and the dress retails for $99 so $4.99 will be donated for each dress sold.

- A local store is having a breast cancer sale on Sunday. An unspecified percentage of sales will be donated to breast cancer research.

- Eggland's best eggs are supporting breast cancer as well. They will have little pink ribbons stamped on each egg.

This is all I can remember but I am sure there is more and its 630 am on October 1. I can't wait to see what else I am exposed to during the month. I am sure I will see pink ribbons on EVERYTHING!

I think the point is good. Raise awareness of breast cancer, the most common cancer in the US for women. But it can be over done. Everything is pink. It gets a bit ridiculous.

The other issue is that all these things say they are raising funds for breast cancer research but you need to check the fine print. A list of questions and answers is found on the website www.thinkbeforeyoupink.org but I will summarize below:

1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?
2. What is the maximum amount that will be donated?
3. How are the funds being raised?
4. To what breast cancer organization does the money go, and what types of programs does it support?
5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

Check their site for more information but the real point is you might be better off just sending a check directly to a solid foundation instead. In the meantime, I'll just be braced against the wave of pink.