Friday, October 31, 2014

But I dont want to!

What the hell is that nurse in Maine thinking? Okay, she went ot Africa and treated patients with Ebola. She came home and was treated horribly and was stuck in an isolation tent in a hospital parking lot. Finally she was allowed to go home. Officials want her to stay in home confinement. Instead she went for a bike ride.

I mean really. She tested negative for Ebola but it can take 21 days to incubate so she still may be infected. She is not cooperating.

She isn't some kind of God who can tell if she has Ebola or not. She is a regular human being with nursing training. Ask the doctor in New York who rode the subway thinking he wouldn't spread Ebola.

Can we please start to be rational about this?

If you are at risk, just returned from treating Ebola patients in West Africa, do you mind cooperating and staying isolated for 21 days to be sure? There aren't a lot of good cures for this disease.
If you are running a fever and you did just return from West Africa, call your doctor for instructions and don't go wandering around the city until you find a crowded emergency room to treat you.

Ebola is a real problem and is on the verge of becoming a disaster. With a little bit of cooperation by all involved, it can more easily be controlled and contained. Grow up, chill out and cooperate, please!

Thursday, October 30, 2014

That recurrence thing

Its the other elephant in the room that only the cancer person can understand. What do I do if it comes back????? As Barbara Jacoby points out over at Let Life Happen, we need a bit more focus on breast cancer, and other cancer, recurrences.

Ask any cancer patient that made it through treatment, the next concern is 'what if it comes back?' Well as my little voice of experience speaks up, at my second cancer diagnosis I was slightly  more prepared than my first. I  had a 'taking care of me plan' in place by day 2, even though I was so stressed about surgeries, chemo and all that fun.

Since I had already lived the cancer roller coaster for 26 years, I had some experience to fall back on. It didn't prevent me from completely freaking out but it did allow me to have a little voice inside me saying 'you did this one and got through it, you can do it again'. I also had the me plan in place.I was in a support group before my first surgery. I signed up for another support group - this one was introduction to breast cancer. At the end of treatment, when many cancer patients fall apart, I had a therapist. I blogged, I talked, and I coped with it all, with varying levels of anxiety.

My plan for cancer three is already in place. I don't care what kind of cancer it may be, but I will put me to the forefront once again. What will it take to keep me sane through the process? Probably more or continued therapy. Maybe a second opinion at some big fancy cancer hospital if its some kind of recurrence.

But what I would really like to see is more research into why some cancers recur and some don't and as to why some people are more likely to have their cancer recur than others. Give me some info people! I need to know. Thank you.

Wednesday, October 29, 2014

Have you ever wondered what RA feels like?

Well basically you feel like crap. I did find this article that gives it a good overview.

Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon

Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.

Today I am home with a cold and feeling all achy and sore. Life with RA sucks.

Tuesday, October 28, 2014

More on men with breast cancer





One of every one hundred cases of breast cancer diagnosed will be male. And did you know that one in four men diagnosed with breast cancer will die from it? Two men who were diagnosed with breast cancer and bonded over it, joined to create a new organization called Breast Cancer Brothers to help support men going through this terrible disease.

An independent film is being made about their journey called "Times Like These

There are no big research studies on male breast cancer. All their treatments are based on studies done on women. This is so sad.

Monday, October 27, 2014

Its Monday

I have nothing to say. I mean I had a nice weekend. I got a lot of craft stuff done to get ready for the season that starts in a few weeks and runs to the end of December. I had several thoughts that flew in and out of my tiny mind as potential blog topics but decided to end up with a list of them instead:
  1. Ebola is not going to kill us all. You can't get it unless you are in contact with someone with the symptoms and there has to be some spread of bodily fluids. So stop scaring the crap out of everyone.
  2. The nurse who is in quarantine in New Jersey needs better treatment. A tent in a parking lot? Really? Its unheated as well. Get her to her house and quarantine her there. I agreee with the quarantine and completely disagree with the way its being done.
  3. There is a new test available today for screening for colon cancer. You get the test, get a sample in the privacy of your own home and send it off where they will see if the fecal DNA shows colon cancer signs in it. Two small catches: $599 and its not covered by most insurance and one of the doctors who discovered it, gets a royalty for each test sold. I have problems with the numbers part both the royalty and the lack of insurance coverage. 
  4.  If you live within 165 feet of a 5 lane roadway, you could increase your risk of sudden heart death for women.
  5. I am so done with pink this October.
Off to work and waiting for something to really inspire me today.

Sunday, October 26, 2014

Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

Saturday, October 25, 2014

If you were told you were at high risk of getting cancer, what would you do?

So genomics is progressing. The newest research shows that through genomics they can account for the causes of 50% of breast cancer cases. They also state that if you are at high risk, you can lower your risk by maintaining a healthy lifestyle - good weight, not smoking etc.

"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."

"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."

So those statements beg a few questions.
  1. What would you do if you were told if you were at high risk of getting breast or any other kind of cancer?
  2. Does the high risk seem as much of a concern if you can lower it by maintaining a healthy lifestyle?
Other research has talked about what you do at a younger age can impact your cancer risk later. But do teenagers really care about healthy lifestyles? The teenagers I know often eat a lot of junk food, drink soda and other sugary drinks, and are not as concerned with getting a healthy meal three times a day. Then twenty-somethings seem to switch to some healthier habits as they mature and settle down. College is a big time for alcohol consumption and other risky behaviors. In recent decades the rates of teen smoking are way down. I know these statements are generalizations and there are exceptions but I am using them to make a point.


So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle?  Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?


My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.

When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.

I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.

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.

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