Driving Miss Daisy was only a movie

On Monday, I met a charming young woman who has just moved here from Spain.  She had quickly dared the drive to Houston, and we talked about other places she would like to go.  This led to topics like bullet trains and underwater subway lines. (Not my favorite mental image.)

Then she said:  It seems as if everything is being done for the rich.  In her country as well as here, local train stops are deserted, and people must be able to drive some distance to where the new train line stops.  Sounds like the US.

 Last week, as I mentioned, I learned that a highly recommended doctor does not take Medicare.  And that my surgeon can't even think of a primary doctor who does.

I moved here from L.A. area, where medical transportation is a joke. My customary hospital had free transit for outpatients who live in the valley.  When I moved to the valley, and developed a spine problem, medical transport was useless. If the driver showed up in the guaranteed half hour window, and if he waited three minutes for us to get to the curb with a walker, we could go to our doctor in Burbank.  But the vouchers we'd bought did not work in Burbank to get us back.

Now I live in a huge area of TX that has virtually no public transportation.  A basic taxi ride is $25.

Why do you care?  

If, at the end of this month, Medicare doctors get a 25% pay cut, who will treat Medicare patients?  (Who will still be paying for Medicare out of their social security.)  Medicare is paying for doctor training, but may not be paying any doctors enough to live on.

Your parents and all the Miss Daisies may need to go great distances to get care. Especially care that you trust.

 If there is no public transportation to that care, and they are too sick to drive, will you take them??

If you're at work, who you gonna call?

Have you called your government about this?  

DCIS - Who gets too much treatment?

 

 Redefining cancer to reduce unnecessary treatment

By Modern Healthcare 

Posted: March 8, 2014 

Modern Healthcare’s article this morning had an excerpt of an interview with Dr. Otis Bradley, CMO of the American Cancer Society.  I’m trying to pinpoint what's new there.   

  His definition, “Cancer is uncontrolled cell growth” leads to  “we believe that 10 % to 30% of all of our localized {breast} cancers are overdiagnosed cancers. These are women who will be treated needlessly.”  He discusses genetics of cells--which ones are likely to grow and kill, which not.  You may have seen some of those ideas on medpage “hot topics” video.

Like some other women after diagnosis, I looked on the web and  even bought the Mayo Clinic Cancer Book.  But I had to stop and realize that much information may not have been found by some patients, and may be rejected by many doctors.  

I was given a copy of my DCIS needle biopsy pathology report, and I read it carefully, because I wanted to be one of the women who may simply go home, watch, and wait.  I didn’t want to think about radiation.  

But when I saw the “levels” on the report,  where my tumor fell on those levels, and that mine was hormone dependent, I was sure radiation would be recommended along with other treatments.  In other words, I was not in Dr. Brawley’s ten percent of needlessly treated.  But what about other women?  

Are other doctors and other areas using less specific or accurate biopsy?  Or what?  Are other doctors using surgery and radiation for even the lowest levels of tiny tumors? 

Are women demanding more treatment for the lowest levels of tumors?  One thing I do know:  fear is an incredible motivator.  Get it out of me!  Kill it!  That all goes through our minds sometimes.

What doctor refuses demands like that?

Much of Dr. Brawley's information has been available for some of us, at least for women who had access to research on the Internet, knew where to look, who even bought the Mayo Clinic Cancer Book.  I remember trying a Sloan Kettering interactive questionnaire on my level and type of tumor, and the statistics were convincing.    But I have to stop and realize some findings may be rejected by doctors.

And, who really advises women to look up a famous hospital on line and take its interactive questionnaire?   Would all women do that?  Cancer strikes women who can’t even read English.  All they have is memories of breast cancer funerals, and doctors who will take them as patients. 

  

POSTCARDS FROM TAXMOXIFEN part 2

Daylight saving time started Sunday.  In the past I always looked forward to the longer daylight; it seemed to make me feel better.  Now I don't get that effect yet.  And I already had a cup of forbidden decaf.

Between the GERD diet and the No Soy diet, how could I have gained this weight?  And still two mornings, I woke up hungry, long before I'd had enough sleep.  Am I just less active? Sitting here learning the new laptop's personality doesn't burn many calories. But I can't help blaming Tamoxifen

There is more hair in my brush than I can ever remember.  It's funny how a side effect that says "older, older" gets your attention more than anything else.  On the hair, I'm definitely going to blame Tamoxifen.

And then I realize, it's not like taking too many vitamins--you don't just stop Tamoxifen.  

Will things level out at the end of these first 30 pills?  I'm seeing the medical oncologist a week from Thursday.

LOOKING THE OTHER WAY - When you have cancer, who you gonna call?

Last week, a friend recommended a doctor she really likes.  When I called his office, I was told he does not accept Medicare.  In fact, he isn't taking any new patients.  Then I read the news and got really scared.

Before cancer research got so much Internet publicity, I read a quote from a doctor who was asked how to keep from getting cancer,  He replied, "Don't get old."

Still, some of us did get old.  And we're still doing it.

At the end of this month, if something isn't done, even more of us who are old enough for Medicare will be searching for a doctor, any doctor who will take Medicare.  Some of us will not be able to travel the distance to the nearest doctor who still does accept it.

Primary doctors are already paid very little due to fee schedules that have been patched more than an old tire. Some eager officials want no more patches.  They want to scrap the whole doctor payment schedule and start over. That may take years.

Without a patch, it is my understanding that doctors will get 25%  less for treating us.  That's 25% less!  As a result, still more doctors will be unable to afford accepting Medicare patients.

The government is starving Medicare.  But we still pay for it out of our Social Security as we have since we were starting to work.  We still pay into SS on payday if we work!  We then pay for a supplement if we have enough Social Security or a job.

But if doctors can't take us, the government will still take our money.  

Threatening to vote for a different party may not help.  The projected budget already shows unbelievable cuts to Medicare.

And many younger people, who do have relatives on Social Security, have no idea this may happen or is already happening. These young and middle aged people may be on Social Security someday themselves.  And their parents will get sick sometimes.   Will there be a doctor?  Who will pay that doctor?

Have you contacted anyone in government about this?  I have.

OUR PATIENT VOICE . . . what's it for?

We want a voice in our medical care.  We want a voice in our insurance.  We want a voice in out government.

Voting is a voice, and demands responsibility.  If the email response on the White House web site doesn't get results, maybe our responsibility is going where there's a news camera.

So a patient's voice gives us power as well as responsibility  It can be used outside the examining room,.

It can be used in the hospital when we fill out the questionnaire and say the waiting room for outpatients is a scandal.

I used mine yesterday when I said to the cashier that I wish CVS would put in a soy-free department.  But I used it to the wrong person.  She didn't seem to be planning to tell the manager.  And I don't know if the manager would plan to tell corporate.  And since even the store layout seems to be homogenized by corporate, that's where the change will come, if there is one.

How many women in the US are taking Tamoxifen?  I don't know if they're all giving up soy because of hormone-nourished tumors - past or present.

This blog is the main place where I use my patient's voice.  Perhaps it's my responsibility to find out how to contact a drug store's corporate office.  Perhaps I can contact Breast Cancer Action, SF, and ask if they have and figures on women who are taking Tamoxifen.  What are the chances my insurance company would tell me?  Ha.

I can ask the medical oncologist if he has any figures.  I can ask why flax seed isn't banned for us to use, since it's supposedly chock full of phytoestrogens - more than soy?

I can use my voice.

POSTCARDS FROM TAMOXIFEN

One side says Vitamin D is a new blessing for breast cancer and will make me avoid recurrence; the others mention a study from another country when a D supplement didn't help anybody?  So I need some real food that has D in it.

It's hard to find on the web the names of actual food that has Vitamin D.  I finally found eggs, and green leafy vegetables. (I haven't heard that term since college.)  Luckily, we had spinach spinopika or however you spell it.  Spanakopita. Try to spell that word without looking on the wrapper if you need a laugh as much as I do today.  

Did I mention Lara bars are the only thing I can find that actually says SOY FREE?  Do not ask how many I ate today.

More important, those little ice cream cups I'm not supposed to eat don't have soy.  Tough decision.  Especially with my slight sensitivity to milk.  My point?  We all had a physical condition to start with, before DCIS appeared.

Note to self:  ask radiation doctor how long I have to stay out of the sun because of radiation So far I haven't seen a big enough sun hat that doesn't look too silly.  I need to call her about some little aches and skin problems.

No use asking the medical oncologist  or the ophthalmologist how many women on Tamoxifen really did get cataract?  I already had one lens replacement, and there is still a small cataract in the other eye.  So I already stay out of the sun as much as possible.  

Despite my solemn vow, this web searching for medical news leaves me drinking too little water, which messes up my GI system.

I suspect the only one of my complaints that's really from Tamoxifen is the flat feeling that could be depression.  (No, not the mood swings. Those are from so many birthdays.)  The medical oncologist said if I had trouble with Tamoxifen, it would be in the first month.  So I'm halfway through that.  Seeing him a week from Thursday.

Don't know the all the words to that country song, Life's too Easy to Be So Damn Hard.

CANCER AND ONE WOMAN'S FEELINGS

Yahoo this morning led me to a site called TAKE PART

In an article December 7, journalist Andri Antoniades highlighted the French group, Mini Foundation that gives cancer patients many resource people to help them feel better and take care of themselves

This article has a video of an eyes-closed "surprise" makeover that gave some participants a good laugh or at least an unforgettable surprise.

What really rang true for me, and perhaps even for every woman after diagnosis, even those  who are “cured” but experiencing adjuvant drug side effects, is this quote from a patient that inspired the makeover project:

 Describing  life before and after diagnosis: "You know what I miss most?" she said. "Being carefree."  

http://www.takepart.com/article/2013/12/06/cancer-patients-mimi-foundation-laughably-bad-makeovers