Perceptions of cancer

After living with cancer for so long, I think I have a slightly different perception of cancer than many others.

On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of  'if you have your health, you  have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.

My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.

When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.

I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.

I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?

So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and  consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.

It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.

And we need to remember that.

Please, patients not profits

I know I can sound like a broken record sometimes (a very badly scratched record) but this stuff just really irks me. A new report came out recently that said Gilead, manufacturers of that ultra expensive Hepatitis C drug,

"The 18-month Senate committee investigation reviewed more than 20,000 pages of company documents.

Of course it takes a Senate committee...

'The documents show it was always Gilead’s plan to max out revenue, and that accessibility and affordability were pretty much an afterthought,' said Senator Ron Wyden, Democrat from Oregon, who co-led the investigation with Senator Charles Grassley, an Iowa Republican, in a press conference.

Its all about the revenue. Their pricing strategy also caused patients in several areas of the country to be limited in their access to the potentially life saving medication because of the cost alone.

In a statement released Tuesday, Gilead disagreed with the conclusions of the report, saying that the price was ‘‘in line with previous standards of care.’’ The company noted that it has programs in place to help uninsured patients and those who need financial assistance to access the treatments. More than 600,000 patients around the world had been treated with Gilead’s hepatitis C drugs since 2013, according to the company." 

Of course they were not happy about criticism. And yes they have programs to help uninsured patients and ones in financial need. But maybe they wouldn't need such expansive programs if they hadn't priced it so high in the first place.

"The report suggests that the factors Gilead used to set its price were not based on the research and development needed to bring the drug to market, or on the $11.2 billion it paid for Pharmasset, the company that developed Sovaldi. Instead, Gilead executives looked at what previous treatments had cost and the effect of future waves of competition on the revenue it could bring in.

Instead of using their industry's standard line of the R&D to bring it to market, they decided to get as much money as they could and then set themselves up for future high priced medications.

‘‘Company officials surmised that its drug had a ‘value premium’ because of increased efficacy and tolerability, shorter treatment duration, and its potential to ultimately be part of an all-oral regimen,’’ the report states.

In its statement Tuesday the company said, ‘‘We stand behind the pricing of our therapies because of the benefit they bring to patients and the significant value they represent to payers, providers, and our entire health care system by reducing the long-term costs associated with managing chronic [hepatitis C virus].’’"
Admit nothing, deny everything. And screw the patients.

Some books still hit too close to home

I have always been a bookworm (hiding under the blankets with a flashlight as a child). I read lots of different types of books. After my first cancer diagnosis I found I would have problems with books on young women with life changing medical issues. I would stop reading them, get upset, and put them down. Some I never finished reading.

I have thought I have had this under control from time to time through the years but then again my angst rears its lowly head. I got a pile of books out of the library last week and was looking forward to reading them. I got through one and put it down to move on to the next.

Red alert! I didn't catch the full plot when I read through the blurb in the library. A woman has to figure out how to tell her best friends that she is dying of breast cancer.

I resisted the urge to immaturely throw it across the room and put it down. It sounded like a great book except for that tiny little detail on an impending death from cancer.

I have pet peeves about book reading. For some reason I don't really like books written in the first person but sometimes I will read one. I'm not sure why the first person bugs me but it does.

I don't mind books with highs and lows, emotional tension, or twisting plots. I sometimes wonder what is the real difference between a romance novel and a military novel. Sometimes I think that its just the amounts of lovey dovey mixed in with car chases, shoot outs, or high drama and a few dead bodies.

But its the causes of death which get me. Bullets, poison, large animals don't bother me. But cancer gets me every time.

It would be nice if it would someday I could get a handle on that.

Big hospitals forget who is important - the patient

A while back I read an article about how surgeons at Mass General were double booked for surgery and the hospital policy was okay with this. Double booking is when the surgeon is responsible for two surgeries going on at the same time. A follow up was published yesterday to show the results of this expose and whistle blowing by Dr. Dennis Burke.

"Burke was at the center of the Globe Spotlight Team’s report in October about the propriety and safety of a fairly common practice called concurrent surgery, or double-booking, in which doctors work on more than one patient at a time."
And as long as the doctor is within 1/4 mile of the hospital during both surgeries this is okay. And that's the new policy instituted by MGH as a result of the story. Really? I don't consider this that okay at all. I would not want the patient where the surgeon wasn't even in the room. I assume the surgeon is responsible for the surgery should be in the room at all time.

Burke is uncompromising on the issue. He called it unsafe and unethical, embracing a cautious approach that I think most of us expect from the doctor wielding the scalpel.The hospital's response to this article was appalling. They fired the man who spoke up about this issue. He was a physician at the hospital and ended up moving on to a new hospital, and all his patients followed him.

The hospital disagreed. MGH said it has taken careful steps to assure patient safety. The hospital accused Burke of violating hospital rules and perhaps federal privacy laws by supplying the Globe with copies of some internal records.
Being a whistle blower is a hard thing to do. And by being fired by the hospital, he has become a hero to others. 

"Burke thinks MGH and its advisers blundered by terminating him. “Probably the stupidest thing they did was to fire me,’’ he said. “If they didn’t, this wouldn’t be such a big story.’’

But it is. And that may explain why nearly 300 people turned out at the Fairmont Copley Plaza on Friday afternoon during a risk management seminar sponsored by Harvard Medical School to hear Burke’s version of events and why he believes concurrent surgery is unacceptable.

When he was done, the audience stood as one amid resounding applause." 

Who do you want for your surgeon? One that is up to 1/4 mile away while you are in the OR or the one who said this was wrong? The patient is the most important person here and their safety should be utmost.

How RA (and other ailments) change your feet

In addition to the pain and fatigue that came into my life with my degenerating disks in my back, RA, and fibromyalgia, my foot wear has taken a big hit.

I have never been a fan of high heels, well not since my 20's and 30's when I was going out dancing regularly. My favorite work shoes were low to  moderate heels for years. I had no real problems with my feet.

Since my RA diagnosis, my feet are a big part of my conversations with my rheumatologist. RA frequently affects the small joints in your hands and feet at first. I can tell you my RA did start that way. I get painful hands and feet. Also, I have to use toe separators on my right foot to stop my toes from curling under each other.

I don't shop for shoes by looks or heel height. My shoe choices are no longer low or medium heels. I get to wear flats. I get to wear supportive flats with a big toe box - meaning no points. I get to put expensive inserts ($50/pair) in my shoes that aren't supportive enough. And my feet are now wider and 1/2 size longer.

Shoe brands that I now look for are Merrell's and Clark's. Naturalizer shoes, a good brand of shoes with structure, no longer are an acceptable choice. While they are supportive they do not provide enough support.

I got rid of most of the shoes in my closet as a result of these changes. Yesterday I found I wasn't alone with this. Lisa wrote about this in her blog as well. (I met Lisa a few years before my RA diagnosis and have been reading her blog for a while now.)

Back to my feet. Foot pain sucks. Because your feet are involved in things like walking and standing. Its hard to do much without using your feet. And sometimes they hurt when I am sitting or lying down.

You never think about some body parts until they stop cooperating with the rest of you. I don't miss my gall bladder much now that I no longer have it. My gall stones made things difficult for a while. I also don't miss my left ovary and uterus since they have been gone for more than ten years.

But my hands and feet are a real problem. They are too important to remove. I am stuck with them as they are and hope they don't get too much worse. And wear ugly supportive shoes.