The rush to (over) treat

We all know the two groups of people:

The ones who get a booboo and say 'no big deal' and clean it later, even if just in the shower later on, vs. the ones who rush for the antibacterial soap, alcohol, bacitracin or neosporin, and bandaid. Well maybe they aren't two solid groups but there are two sides to the equation with scatterings in between. 

With breast, or any type of, cancer, there is often a rush to say 'get it out of me!' But that is starting to change, especially in view of concerns with overtreatment of DCIS, that some people say 'I'll wait'. I can see that.

I think the typical patient has lemming traits where they agree basically with what the doctors tell them, and if they do not agree, they find another doctor who they agree more with. How often do we stop and say, 'now that I know what it is, I can wait and make a decision'. I think we need to stop and think with a diagnosis and say 'what are my choices?' and 'can I wait?'  And not to skip 'what are the pros and con's of immediate treatment'.

Doctors are also starting to change their train of thought as well.

We have learned so much about the side effects of treatment that I think they need to be a big part of our medical decisions. And we should consider no treatment among the options. Its my body and my choice.

Good intentions gone bad.

The heights of stupidity are being reached for pinktober.

Let me count the ways. First of all, an NFL player who lost his mother and four aunts to breast cancer is being fined for having the words 'Find A Cure' and a pink ribbon on his eye black (those are the stupid little black rectangles of paint under their eyes, in case you didn't know - like me). He has had these for the past five seasons and now it is a problem for the NFL, which covers itself in pink each year. So they fined him $5775. Really? Everything else can be pink but he can't express himself?

Talk about a double standard - the league can be pink but he can't show his support. I wouldn't have a problem if the NFL didn't go pink every year.

What about 'Knitted Knockers'? Yep, a bunch of knitters in South Carolina create them for breast cancer patients to wear after surgery. These foobs are made out of soft yarn and stuffed with cotton to wear after mastectomies against the skin.

So what if they are the wrong size? Its a nice idea on some level but on most levels its just wrong. Especially the name.

Finally, pink beer. Yep, a brilliant bar has decided to serve pink Michelob Ultra to raise awareness for breast cancer. It is not clear if any extra money is being raised through this. So do the drinkers of pink beer think their purchases help raise funds for anything related to breast cancer? I think we have trained people to think if something is specially labeled or colored its purchase is helping the cause, not just awareness.

Good intentions gone bad.

Am I making a bad decision?

Today is my last day of work. Well, I will continue to work one day a week from home and go to the office once a month until my replacement is found. And I will go into the office to help train him/her for a few days.

The reason I am leaving work is my health is not that great, in case you hadn't noticed. Even though I have cut way back on my schedule, I still am fighting fatigue and aches and pains. One goal in moving is to cut way back on expenses so my non-existent income will not be noticed.

Three years ago,  in the fall of 2012, I was diagnosed with both rheumatoid arthritis and fibromyalgia. (Actually it was exactly three years ago tomorrow that I announced this.) At that point I was working two jobs and a total of about 30-35 hours each week.

In early 2013, I resigned from my other job because I could not physically keep up the pace of working so much. It also required nights and weekends. In 2014 I started working fewer and fewer hours in my current job. Now I am down to about 8 hours each week, and I can barely keep up.

With the decision to move and reduce our expenses, it became much easier for me to decide to stop working. I am looking forward to having more time to take care of me.

During the next few months, I will have plenty to do with moving and the holidays and craft shows. Once we settle into a new house, I have no plans on staying home all the time. I would like to find some volunteer work to ensure I get out of the house and don't go stir crazy - but that would be fewer hours with more flexibility. I also plan to continue to go to the gym three times a week. My sanity is important.

But I must return to my original question of am I making a decision? I guess it would be a bad one if I was only thinking financially. But I do not have that luxury any longer.

I miss my friends

The other day I learned that another one of my online cancer friends passed away. I had never met her in person but we knew each other for probably close to 8 years on line. She lost most of one leg from cancer and instead of bothering to tell people the medical reason, she would just say 'shark'. As it was much more interesting.

She also became a stand up comedienne and performed at clubs in the Chicago area where she lived. She was very supportive to me when dealing with ups and downs of cancer and was quick to provide supportive words when I needed them.

She has now joined the ever lengthening list of friends who are no longer with us because of cancer. I miss them all, from the first friend who died from cancer, Andy, back in ~1983 to Lorri, just a few days ago.

You can coat cancer in a pretty color and wear boas, hats, shirts, and carry colored bags, and light up buildings. But its no pretty, its not a war, it sucks.

What happens when you are sleeping

I think we should all be allowed to have an independent person in the OR while we are undergoing surgery if this is any indiciation:

"About half of all surgeries involve some kind of medication error or unintended drug side effects, if a study done at one of America’s most prestigious academic medical centers is any indication."

That is just plain scary. You go for surgery and then you have a 50% chance of medication error or unintended side effect. That is not good.

"“There is a substantial potential for medication-related harm and a number of opportunities to improve safety,” according to the study, published in the journal Anesthesiology. More than one-third of the observed errors led to some kind of harm to the patient."

But these numbers are pretty real. A recent study was done at Massachusetts General Hospital by observers. Previous studies showed much lower numbers but those were self reported by doctors.

"Drugs delivered during an operation don’t have the same safeguards other medication orders do. In most parts of a hospital, prescriptions are double-checked by pharmacists and nurses before they reach a patient. Operating wards are riskier. “In the operating room, things happen very rapidly, and patients’ conditions change quickly, so we don’t have time to go through that whole process, which can take hours,” Nanji said. While all the errors observed in the study had the potential to cause harm, only three were considered life-threatening, and no patients died because of mistakes, Nanji said. In some cases, the harm lay in a change in vital signs or an elevated risk of infection."

A few more thoughts:

"Not every mistake meant the patient got the wrong drug or an incorrect dose. For example, many errors had to do with properly labeling drugs when they’re drawn into syringes for delivery. Because most medications just look like clear liquids, having several prepared without labeling them poses a risk that the wrong one could be delivered. Those breaches in protocol were counted as errors. In about one-fifth of the problems, adverse drug reactions were considered unavoidable — for example, if a patient had a drug allergy that doctors didn’t know about ahead of time.  The study found that some kind of error was made in about one in every 20 drug administrations. Several medications are typically used in each operation, from anesthesia to antibiotics, so that rate translated into some kind of error or adverse reaction in every other surgery. Operations that lasted more than six hours were more likely to involve an error than shorter procedures."

Okay, I'm good with no more surgeries, thanks.

I've been busy

For the past month or so, I have been very busy. And for the past week I have been very very busy. The big project has been moving. Thursday we saw a house we really liked on paper but in reality it had too many problems. We also saw a house that was too big for us, a house that was a bit too expensive, and a house that simply needed more work than we wanted to do.

Friday we found another house on line that we really liked. Our realtor even went to see it Friday afternoon and they said we needed to act fast. My husband went to see the house on Saturday morning (I was unavailable) and liked it a lot. We made an offer, only to find out someone else had already made an offer that was accepted.

Sunday we went to see more houses, only to find one that we really liked on paper had an in ground swimming pool, something we don't want. And we saw a couple more but either they were too big, too small, to much money or needed more work. We decided to go back to the one we really liked that was too expensive and decided to make an offer. We now have to wait to find out. As the house hunting roller coaster continues.

After the house price, the biggest issue in house hunting is my husband's commute. The second biggest issue is to make sure we have a house that is mostly one floor living as the expected decline in my health will continue. This all makes me feel even older. I am too young to look for one floor living.

But I've been busy. I promise to get back to regular blogging. As pinktober continues.

More on cancer costs

A few days ago, I blogged about the costs of cancer. But there are lots more costs of cancer that are not just financial.

There are physical costs that include surgical scars, damage to your body from treatments, and more.
The emotional costs are things like PTSD which takes a lot to get through. Neither of these can ever really go away. You just end up covered in scars inside and out.

So well-intentioned people do things like give free trips and events for those who were diagnosed with cancer. These are the people who offer trips to us cancer people.

If you have been diagnosed with cancer, you can go to events like the Stowe Weekend of Hope for free the first year. Then you get an incredibly discounted rate for future years. Don't get me wrong, the Stowe Weekend of Hope is a wonderful event with so many resources for those with cancer. But I just wish I didn't have the medical history which allows me to go so cheaply.

So as we dig deep in our financial pockets we also have to cope with all the other costs and you can't just declare bankruptcy and walk away from your emotional and physical costs.