Monday, October 20, 2014

Overpinked

Yesterday I went off for a day of fun and shopping with a friend. On the way home, while stopped at a light, I noticed pink signs in front of the Valvoline oil change place for windshield wipers.... We didn't get the connection.

Some Hollywood stars have put pink strips in their hair to support breast cancer. You can get pink drill bits for fracking and offshore oil drilling. According to The Onion, the Komen spaces ship is on its way to the outermost parts of the galaxy.
I am so overpinked. Only 11 days to go. I'm waiting for Halloween.

Sunday, October 19, 2014

Disillusioned Doctors

There has been a fair amount in the news recently on disillusioned doctors and the 'tell all' books on 'life behind the scenes'. Disillusionment is being deprived on illusions. So what were they expecting?

I guess I mean to doctors go to medical school expecting to save the world? I know the medical world has changed significantly in the recent decades and the focus has changed from caring about patients to caring about insurance costs and paying the hospital administrators. But as their world adapts, the medical professionals need to adapt.

Technology has advanced and made healing patients easier. Patient care now includes concerns with hospital and insurance costs. Its a fact. It doesn't mean its right but it must be worked with and adapted to. I am the first person to decry the weight an insurance company has on choosing my medical care. And I would value change to refocus care on to what the physician wants for the patient as opposed to what insurance will cover.

But I don't want a medical professional who is disillusioned and hating the system, to bad mouth it to me and be cranky. I still want the care where the carers do care. I want the bedside manner. I want the ability to talk and ask questions. I know the staff are rushed but it can be done with a smile instead of a frown.

To correct the system will mean more change so please do not resist the change and be grumpy and disillusioned to me the patient who is in need of care.

Saturday, October 18, 2014

Please Don't Contaminate Me

It is flu and cold season and Ebola is looming around as well. I got my flu shot. My immune deprived body does not handle germs well these days. My husband got a flu shot too

 It is a good practice for everyone to get a flu shot these days. It can save you time off, your health, etc. I was asking co-workers the other day if they get flu shots. One of them said she never gets flu shots but if she got sick, she would stay home and not come to work. Another one  has a thing about needles and never gets shots if she can avoid it. I think she would stay home as well. One sniffle in the office and I could end up sick for two weeks.

I can live with that.

It greatly irritates me when I see people using public restrooms and not washing their hands. Especially at the gym. Icky poo!!! That's another no-no as far as I am concerned and common sense. I wash my hands when I arrive at the gym and after working out - and after using the bathroom.

And Ebola. That's a nasty one. I think I'll stay off airplanes for a while.

But in the meantime, just get a flu shot and wash your hands.

Friday, October 17, 2014

Be Bold, Be Bald Day

October 17th is national be bold, be bald day (www.beboldbebald.org). I had never heard of it before this morning but its the 6th annual. I am not so sure how I feel about this.

If you are a supporter, you get to wear a lovely bald cap (which looks nothing like a bald head) to show your support of people who have lost their hair as a result of cancer treatment. Once you sign up you can order your kit of a bald cap and sign up sheets or you can order bulk quantities of bald caps for your team.

You can sign up your organization to be a beneficiary of the BBBB effort. Then you will receive about 75% of what was raised by your supporters.

I have decided I have two problems with this effort:
  1. All the smiling people wearing ugly bald caps over long hair do not make me think of cancer patients. 
  2. 25% of the amounts raised don't make it to you.
I have a friend of mine who shaved his head to show support for someone with cancer. That is what I call bald. But it still doesn't have that chemo pallor we all know and love. And its not worth 25% of your money to wear an ugly bald cap.


How ugly are these bald caps? this is a picture of actress Kathy Bates wearing one of these.


Now that I have written all this I guess I have decided I don't really like this much at all. I like the solidarity but that's about it.

Thursday, October 16, 2014

And so what is the cause of breast cancer?

That is the unanswered question. Tons of research has been done on treating and curing breast cancer but not as much has been done on why 90% of breast cancer patients have no family history. That's right, you hear all those conversations about BRCA genes and hereditary breast cancer and the Angelina Jolie effect but those only account for 10% of all breast cancer cases.

"Five eminent Boston researchers will officially join forces Thursday to tackle one of the most perplexing questions about breast cancer: Why do so many people with no family history of the disease get it?

The researchers will examine whether common man-made chemicals are responsible for the disease, which increasingly strikes men and women.

In 2014, breast cancer will be the second-most-diagnosed form of cancer and the third- deadliest form of the disease, according to the National Cancer Institute. But unlike with some other cancers, the vast majority of breast cancer diagnoses — more than 90 percent — cannot be traced to a hereditary cause, the institute said."

This is the kind of research I want to see. I am one of the 90% - there is no family history on either side for me. One of my mother's second cousins had breast cancer back in the 1970s and since my diagnosis, one of my aunts was diagnosed with early stage breast cancer at age 76. Both of my grandfather's died of cancer - one with gall bladder cancer and the other with prostate. My father was diagnosed with lymphoma in his 80s. This is not a breast cancer family history.

So why me? The eternal question of all cancer patients. I dislike the articles that tell us what we did wrong. I want to know what factors might have caused my cancers.

"“The bottom line is that there is not a lot of coordinated research around the environment and breast cancer,” she said. “We felt that in order to have some kind of strong impact on the field of environmental causes of breast cancer we needed to put together a large project.”

Most cancer research is dedicated to developing drugs or cures, Sherr said. But the Boston consortium’s ultimate goal is finding a way to prevent the cancer from ever taking hold."

They have a $5 million three year grant to help solve this riddle. I hope they get more funding to continue their research. Read more here.

Wednesday, October 15, 2014

My poor feet

My feet hurt these days courtesy of RA. I used to wear a size 7.5 wide. That is not the case any more. I have a bunion on my right foot which means I need to wear an 8 wide. I have to put orthotics in my shoes so I even wear at 8.5 wide.... Banana feet!

RA often affects the small bones of your hands and feet first. And yes it did get me there. My feet hurt often. I do exercises, wear inserts in my shoes. But I still hobble when I first get out of bed every day. The cat can beat me downstairs when I am having a bad day.

I think we are at the time, where I will need to talk to my rheumatologist about treatment options. I am on the ultra cheap, around for decades methotrexate. I can't take a lot of the new ones like Enbrel and Humira because they are not recommended for people who have had breast cancer (cancer the gift that keeps on giving). Those are the ones with the fancy commercials showing professional golfers saying they have RA but their Humira keeps it under control. No, I could get the newer, fancier, and more expensive Xeljanz.

So do I let my feet hurt or start paying a lot more? The real problem is the pain in my feet reflects joint damage there which needs to be stopped before it gets worse.

Tuesday, October 14, 2014

Cancer fears

Normal non cancer people have normal fears - being bitten by a dog, speaking in public, getting the flu, spiders, snakes black cats, etc. If you add cancer people to the mix, their fears include cancer spread, cancer return, and another cancer diagnosis, on top of all the other normal fears.

With cancer, we need to learn to balance our cancer fears and not obsess over them. That is the hardest thing about a cancer diagnosis. Since my first cancer diagnosis, I have always had the thoughts of 'what if' cancer came back, spread, etc. What would I do? What would I want from my treatment?

And then it happened, I did get a second cancer diagnosis. That was the triple loop corkscrew roller coaster ride. And it took a long time to get the fears under control. I learned a lot in that time period.

First, I had to stop obsessing about cancer all the time. I couldn't live in cancerland 24/7. I had to get out of cancerland and be a normal person who went to work, grocery shopping, getting together with friends, spending time with my husband.

Second, I had to learn to let cancer have its place in my life. I couldn't cut it out completely because it had to be there so I can get the follow care I will need for the rest of my life.

Third, I had to learn to stop feeding my fears with the 'what if' moments and letting the fears take over my life again. I don't need the work/life balance, I need a cancer/life balance. Yes, cancer may come back again but it might not either. I could find a snake while weeding in the garden too.

Monday, October 13, 2014

Metastatic Breast Cancer Awareness Day

Today is Metastatic Breast Cancer Awareness Day. One day in the middle of all the pinkness for the kind of breast cancer which kills people. Once cancer metastasizes, the patient choices get very limited. They can be treated by one medication for a while and then the tumors will grow resistant and the cancer continues to grow. It becomes an eternal cycle that only ends when the patient dies.

That is metastatic breast cancer - the one that kills you.  This is where we need more research and more funding. Take all that money spent on pinkification and spend it on metastatic breast cancer.

So if you have money to spend on a pink thing, write a check and donate it to the breast cancer research at the American Cancer Society or the Breast Cancer Research Foundation and put a request with your donation that it be used for metastatic breast cancer research.

Sunday, October 12, 2014

A plateau

Right now I seem to be at a plateau. My health has not gone too wonky in the past few months. I have nothing looming which should change this. 'Should' is the operative word here as there are no guarantees with life in cancerland. But I am feeling optimistic.

Physically I feel okay, except for my back which is having a procedure in a few weeks which should help with the pain I am having. Okay, well my feet are another story but I have a new pair of shoes which should help.

Emotionally I think I am in a fairly good place as well. Most of my emotional problems are the result of physical problems. My continued physical downward spiral in the last seven years has taken a huge toll on me emotionally. Every year I can look back and think "I could do that last year but this year I can't even think of it". How's that for the fun part of life?

But I feel I am at some nice stable plateau where I can continue with my life and not fall apart anytime soon (I hope). My stress level is down. My fall craft season is looming which will hog all weekends from Veterans Day to Christmas as well as take up a lot of my spare time as I always have something to work on.

I guess this means I am doing all right for now.

Friday, October 10, 2014

Stop telling us what we did wrong

So new research (because we always need new research) tells us what we did wrong as teenagers is what caused our breast cancers. Um. Thanks. Not really.

And to put it in simple terms, and I quote, this is what the succinct statement for all of the idiots who allowed us to eat cheeseburgers daily when we were 14:

"If you just go from having red meat once a day to once a week, you can eliminate most of the risk," Farvid said.

And the solution is:

Researchers recommend choosing other forms of protein like nuts, beans, poultry and fish.

And the skinny girls lose out here, they actually had a higher risk of getting breast cancer. You can read the rest of the article here.

These articles are just annoying. They tell us what we did wrong that caused our cancer. Why don't you tell us something we did right. And I was the fat kid so you still haven't answered squat for me.

Thursday, October 9, 2014

When will this end?

We have reached a new low in pinkification. Yes, nothing lower than this ever before.




Do you know what this is? Its an underground drill bit (hand) painted pink to help raise breast cancer awareness. These tiny little drill bits, 85-260 lbs each, are used in oil drilling. The company, Baker Hughes, has partnered with the Komen Foundation (for the Cure) to help do their 'bit' for the cause. They are aiming at the roughnecks on the oil platforms who might not yet be aware of breast cancer and will ship each bit with literature on breast health facts in pink topped boxes.

For some reason, I think this a horribly misguided attempt to waste money on breast cancer awareness. I am sure that the workers on the offshore drilling platforms are no less aware of breast cancer than the rest of the American population so I do not think there is a need for them to be 'made aware' any more than anyone else. Any drill bit is going to be instantly covered in dirt, the paint scraped off through its use, and the paint is a completely wasted effort. And aren't the drilling companies producing and using chemicals that are known carcinogens?

"But drill bits are used, of course, to drill oil and natural gas wells, some of which are later exploited using hydraulic fracturing, or fracking. We don’t know a lot about the health risks of fracking, owing to drillers’ and regulators’ drill first, ask questions later strategy, and because the industry, in many cases, protects the precise mix of chemicals used as a “trade secret.” (Baker Hughes announced last week that it will begin disclosing all of the chemicals used in its fracking operations.) Of the 190-some chemicals commonly used by the industry, we’re lacking publicly available information about the safety of about a third of them. And in August, a federal study tested urine samples in workers who monitor fracking flowback, and found that some had been exposed to “higher than recommended” levels of benzene, a known carcinogen."

But since Baker Hughes has also donated $100,000 to Komen, they are happy to sink to a new low with pink drill bits.

Wednesday, October 8, 2014

Right to choose




Would you move to Oregon if necessary? I would.

I hope that you do not disagree with this woman's choices but I completely support her. She has a very unfortunate medical diagnosis at age 29 and has taken steps to live her life as best she can. She has gotten the medication she needs to die with dignity as she wants. She isn't rushing to use it but is much more relaxed knowing that when the time comes, she will be able to choose.


I am a firm believer in DNR's and palliative care. But sometimes I think it doesn't go far enough. First of all with a DNR, someone else is making the decision on your body that it is time to stop treating you. Second of all, what if the DNR happened after months of agony? Instead of at the beginning of all the agony. Palliative care is wonderful but it can only do so much. What if your body develops a resistance to all the pain medications? Where would that leave you?

I would move to Oregon in a heartbeat if necessary.

Tuesday, October 7, 2014

Avoiding pinkness

In an effort to avoid pinkification (and take a break from bloggin), I ran away and joined the circus. No, actually my husband's family had a big family reunion on the coast of Oregon - a place we had never been. It was a lot of fun and a nice get away to avoid over pinkification. I didn't mean to take a break from blogging but I had some technical issues as well.

It worked in the sense that we were off line and avoiding pink. But it was not without its ups and downs.

First I was very efficient and packed two empty reusable water bottles. And I left the better one one the plane. Second, I left the one of a kind charger for my tablet in the hotel in Portland where we were spending the first and last nights. By the end of our second day, my feet were hurting from RA so much I had to stay off them more for the rest of the trip. And our spare water bottle appeared to have sprung a leak.

It was a great time catching up with relatives and enjoying the Oregon coast. We even saw seals, sea lions, and whales. We did not see many signs of pink. To be fair we were in a small town and avoided the areas with chain stores. It was only when we ventured near them, were we assaulted by pink. Then on our last night, Sunday, we watched the Patriots destroy the Chiefs while wearing pink gloves, pink shoes, pink socks, pink towels, pink ribbons on their helmets, etc. I am not sure if the pink weakened the Chiefs but we were happy to see the Patriots win.

While watching the game, my husband suggested that instead of manufacturing all that pink crap (particularly if in some factory overseas), that all NFL players should donate 1 day's pay to breast cancer research instead. 32 teams times 53 players = 1696. Average salary is $1.9 million or a total of $3,222,400,000. So one hour's salary would be $368,864 or a day's salary would be $8,852,747. A tidy sum indeed. Why don't they just donate that directly and we can skip all that pink?

But I digress. We did successfully avoid pink by avoiding chain stores and chain restaurants. We also didn't watch a lot of television.
The views were from our windows at the Elizabeth Street Inn, Newport, OR. It was peaceful and relaxing.

Thursday, October 2, 2014

I've got owies

So mature of me but I am having pain issues these days. Everything from a sore toenail to some more serious back pain. (Insert snarly, perky voice here 'on a scale of one to ten, how would you rate your pain today?') Its definitely in the 7 range.

I have not been god to myself recently and in some ways, I have been downright bad. Everything from carrying heavy things to cutting my lymphedema hand to standing too much.

On the plus side, I put on a new pain path this morning, on the minus side, I cannot expect much relief rom my back until then. And with additional stupidity, I may border on cranky or possibly even crabbiness.

Wednesday, October 1, 2014

An Amazing Video

The purpose of this video is Hannah wants to explain what its like to have cancer to her friends. She has been very brave and will make you cry.




She also wants to be famous so help share her story.

And she has a really cute outfit.

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