Friday, October 24, 2014

Another hidden side of breast cancer - male patients

Yes breast cancer can and does occur in men. Less than 0.1 percent of all breast cancer diagnoses are male (I think that's the number - its very low). Until I was diagnosed with breast cancer I had no idea men could get breast cancer. Then a friend's cat died of breast cancer. Basically any animal with the right physiology can get breast cancer.

So if you think its bad to get breast cancer as a woman. How do you think a man would feel if he walked into the breast cancer treatment area and its full of women? Or he had to go for a mammogram in the 'pink area' of the hospital?

I can't imagine what it would like to be dealing with a breast cancer diagnosis and feeling literally like the 'odd man out' in the women focused world of breast cancer. 

I can  think of numerous places and instances during my cancer treatment that I felt was very female focused. Even the exam rooms are filled with pictures, diagrams, and schematics for breast cancer diagnosis and treatment all focused on the female body.

But it happens, men do get breast cancer, and we should welcome them into our world and let them benefit from our experiences. If you know a man with breast cancer, please take a few minutes to reach out to him and see if you can help him in his breast cancer journey.

Thursday, October 23, 2014

Another case of the warm fuzzies

Now that we are past the age where the three martini lunch was an acceptable daily interlude, it is not acceptable for anyone to be under the influence of anything (other than a post-four hour meeting daze) in the work place.

Back in the late 70's and early 80's I worked in a restaurant that was a destination lunch place for a bunch of office park employees. We had cab company phone numbers next to the phone for those who could not safely drive themselves back to the office. Over the five years I was there, often working as a cashier, I watched the lunch checks go from three martinis to one glass of wine or a single Bloody Mary or other vodka based drinks. Times changed even then.

Later in the 1990's I worked for a British company and went to the UK regularly for week long trips. I was usually taken out to lunch at a local pub where I was expected to have a beer, or at least a half pint Shandy (lemon/lime soda with beer) with my meal. I usually declined because it would cause my jet lagged body to demand a post meal nap instead of working for the afternoon. In the US, I think its very rare that alcoholic beverages are consumed at lunch during the business day any more. I don't think any work place is immune to impaired employees but some of them have more long lasting implications than others.

When we go to the doctor we make a few basic assumptions, that they are trained and know what they are doing, they won't hesitate to consult their peers when they are unsure, and they are sober. While the majority of doctors would report their impaired colleagues, 17 percent actually have dealt with one. Um, do the math, that's one in six. I'm not picking on doctors and actually believe that they are probably one of the more conscientious industries. They are probably less likely to go out for fancy lunches to celebrate a business deal, or even have time to do more than grab a quick bite during the day. But when its my body and health that's being treated here, I would like the basics.

What astounded me about this article is that the numbers are so high. What it doesn't state is if the 17 percent reflects over their career they have dealt with impaired employees or over the past five years. We need a little more information here before becoming concerned. But I am already concerned. Should I start sniffing their breath?

Wednesday, October 22, 2014

Not for me

I frequently get requests on my blog to blog about something else, besides me and my ailments. I usually decline because they are not the focus of my blog - which can be summed up as things that interest me or annoy me. (How's that for a bit of selfishness?) I have even updated my home page with a note that I will not blog about other people's  issues. No one reads that. I still get requests.

Yesterday I got a request:

"My name is Mxxxx. I am an intern with Darna & Company. We have a new product in the market called the NoMoNausea band. This band uses peppermint aroma therapy and acupressure to combat nausea and vomiting. We have joined with the Moffitt Cancer Center in Tampa, Florida to help patients going through treatment. For every band purchased in the month of October, a patient at the cancer center will receive one free of charge. Please visit our website, nomonausea.com, and amazon for more information. To receive $1 off use the coupon code: SAVBOOBS. We hope that this band will bring relief to the nausea and vomiting from the trauma of the chemotherapy treatment. Please share our information with others that deal with nausea and vomiting. Thank you for your time."

At first I just ignored it - because I felt it was a run on sentence/paragraph with typos which had clearly been cut and pasted from another blog. Then I decided it really ticked me off:
  1. The coupon code is offensive.
  2. From the coupon code and I can deduce that it is a pink project
  3. Wrist bands for breast cancer patients? A lymphedema no-no.
  4. Why should I care about a cancer center in Florida?
I admit that in the past I have used wrist bands and not thought much about the wrist band/lymphedema connection. Now I can no longer wear bracelets, even loose ones, because of lymphedema and arthritis/tendonitis, so why would I want a wrist band which puts pressure on my wrist? I can feel my arm swelling at the very thought.

So this clearly became a topic that annoyed me to no end. I do not recommend this product at all. They need a better marketing plan. Hey, I'm a marketing consultant, maybe they should  hire me.

Tuesday, October 21, 2014

The important things about blogging

This sort of goes back to why I blog. I blog about what I want to, what appeals to me, the mood I'm in, how I am feeling, or whatever is on my mind. When I started blogging I never dreamed I would be blogging for so long but I am.

I also follow many other blogs, mostly health related but some are about gardening, or cooking, or just writing. Its nice to know there are other bloggers out there. And its nice to know they like to read my blog too. And other people read my blog, too. The blogosphere is sort of a little club where we all have bonds through our health ailments. So somewhere in me I get a little warm fuzzy feeling about being in with the cool kids in high school again.

And then I get nominated for being one of the best breast cancer or whatever blogs. Yesterday I found a link for the best 150 breast cancer blogs and a little thing niggled inside me that I wanted to belong again. I did find my blog on the list. I was happy. Sort of. It was only someone else's opinion.

And then I decided I don't really care anymore. Its not what other people think about me that's important. It sort of goes back to wanting to be the cool kid again. I'm not here for other people's opinions. I write to express my thoughts and deal with my health issues.

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.

Share It