LUMPECTOMY FOR BEGINNERS And . . .

Even if you have never read PULSE voices from the heart of medicine

Please read the story BE LUCKY (I think it may have posted tonight, Friday.)  Although it is not about breast cancer, it gave me some glances at good news and gave me some good advice.

There can be more than one incidence of bad news, and there can be amazing developments and good news and decisions that turn out to be right.

LUMPECTOMY FOR BEGINNERS: the research forest

There's even a road here called Research Forest.  There are many trees, almost no road signs, it's hard to see the building you want, and one medical office is approached thru the driveway of a gas station.
That sounds like what I wade through  to research  DCIS, and what I may want to ask the surgeon at my post-op appointment next week.

I just read some material on line from Mayo Clinic that is almost 5 years old.  .It mentions that some controversy about the treatments.  I was stunned to find how many days of radiation were being used at the time of this article.

The article also mentioned that tamoxifen does not prolong life for DCIS patients.  I'm completely mystified about the used of "prolonged life" in all these discussions?!  

I know there are women who just get good lumpectomy results and go home.  No radiation, no tamoxifen.
I still think I'll go to see the radiation oncologist, just to see if there's anything new that isn't so scary.  But before I go, I want to find some material on what happens to women who do not choose radiation OR tamoxifen.

I need to MAKE A LIST OF QUESTIONS I WOULD ASK THE RADIATION ONCOLOGIST IF I GO. And I think I'll search Breast Cancer Action SF website again.

LUMPECTOMY FOR BEGINNERS What I know

I could worry more about things that may be urged by the doctors. Medicine, machines.  Who knows best?

I worry less right now because I know:  I am not a disease.  I am a person and most of me is well.

Because I am a "healer."
I did not use any IV pain medicine after the lumbar fusion.
I climbed half a flight of stairs without a PT the second day home from post-up spine rehab, because I was determined to get into that restaurant and eat dinner with my daughter.  Like a well person.
I had a medical scare several years ago.  Umpteen biopsies and tests  later, there are no further symptoms.
Even my California dentist said I'm a healer.

I dare to believe this illness may be (or may have been) a blessing.

I have plans, and those plans don't include being an invalid.

I still meet women in their eighties who are doing fine, and looking good.  One of them was still skiing last time I spoke to her.  One of them, who exercises in the pool three mornings a week, is a breast cancer survivor.

It's okay to plan for a future decade.

LUMPECTOMY FOR BEGINNERS AND . . .questions, and questions

The good results from pathology just bring up more and more questions, and give me time to see if any of the questions really need to be asked of the surgeon next week.  When I pressed him earlier for more information, he said he would recommend that I see two oncologists.  One is a woman.  I didn't write down the names.  I would like to know why he chose those particular ones.

I'm doing much research on radiation and medicines, much of it on Mayo Clinic site.  So much research goes into one tiny finding, and who will find it and build on it?  Did I mention that I've ordered the Mayo Clinic Breast Cancer Book?  It may get here the day before the post-op appointment.

Heard (third hand) that one doctor expects some of the new medicines may be available sometime in 2014.

The surgeon said I don't have to see either oncologist.   I hear about friends of friends near my age who simply went home after the lumpectomy. I want to know what the statistics are for women who, for good reasons, did not choose radiation or drugs.

At least, I have time to learn more.

LUMPECTOMY FOR BEGINNERS: Results day

Dr. Hubbard called yesterday afternoon, hours after I blogged, and said he was going to make my day.

No invasive cancer, clear margins on the tissue sent to the lab, so no second "ectomy" necessary!

Celebrated by getting my car winterized.in the pouring rain.

Now another week of peace until the post-op appointment, where I expect to get the names and numbers of two oncologists the surgeon recommends that I see.  I will probably see them.  Will I take the extreme measures I expect them to recommend?

Some wise person said:  "When does this decision have to be made?"

Not today.

Today is for the library, and sending some cards, enjoying my mobility, and many good things.

LUMPECTOMY FOR BEGINNERS- Day 7

Somehow I've managed to keep very busy and not make the surgeon's 2-week appointment.  So far no results about the "lump."  Why do I feel a little fear around making this call?  Probably a combination of old things like fear of authority figures that leads me to believe a doctor can make me do something I don't think is a good idea.  The choices in my future seem like choices between two unpleasant alternatives.  Rotten and dangerous.

And fear of the unknown since I don't have any results yet.  Okay.  Made the appointment.

It's easier to keep me as a person separate from the disease if I'm not talking to doctors, but I did accept an  offer to receive some info from an RN friend of a friend who's done several unpleasant parts of the process.
And I keep re-reading The Immune Power Personality.

I'd like to go for some psychology therapy -- something else I've postponed for so long.

Be well, and let me know what you think.

LUMPECTOMY FOR BEGINNERS Day 6 Unexpected help

I'm still sleeping in a soft bra just like a little insurance policy because I don't know how fast the inside area heals.  But basically I feel so normal . . .

The biggest surprise is that I have confided in a couple of guys about this, and I didn't expect to do that.  Long ago on a first date, my date stopped his little red car half a block from my house.  He said, "You seem like a very private person, and I want to kiss you."

I still like plenty of privacy. But the spine injury made me less private.  And then, the walker--not a private thing, if you ever want to go outdoors.  Even before the walker, I had told friends about the spine problem.

But breasts?  Grandma would be shocked.  But it's not her life.  I think we choose the people we trust.  Or, the universe sends some we trust.  And remember what James Lee Burke said about some people we see for the first time, and we know they're family. . .or words to that affect.  It's showdown time now.  I tell strangers on this blog.  I tell the trusted ones; I thank a trusted one for his openness about his march down similar corridors.  And they don't have to be women.

LUMPECTOMY FOR BEGINNERS day five Mad as hell

The morning opened bright and cloudy and pain free, with the news that a college friend had the same diagnosis as I did, and is scheduling her lumpectomy.

ONE OUT OF EIGHT WOMEN is so real to me this week!  It isn't a statistic.  It's my neighbors, my best friend in TX, and acquaintances who haven't told me.  It's a friend with no breasts, and a friend who died at the beach.  Is it the woman in Starbucks who smiles at me every week?

How many does it take before we admit we're mad as hell?  How many of us aren't even mad yet?

Yes, it's wonderful that there are new treatments for women with worse cases than mine.  But if we don't stop this horror before it starts, we'll be walking and running forever for new cures forever,and watching women die.

When will I see a WALK TO FIND THE CAUSE?   Polio stopped because finding the virus made the vaccine possible.

Who's afraid that his company is manufacturing a cause?  

Day 4 PS

I couldn't resist stealing this quote from Healthcare Design Mag on line today:

Satchel Paige. . . : "It's not what you don't know that hurts you, it's what you 'know' that just ain't so."

LUMPECTOMY FOR BEGINNERS Day 4

Somewhere the part of me that was excised is either being studied by a pathologist or in storage waiting its turn.  Meanwhile, a lot is on hold.

The nice thing about being on hold is that nobody is going to do anything to me that hurts today. The other nice thing is I don't have to struggle today with the impossible decisions about scary medicine, etc.  The bad thing is I'm on hold.

 My Literacy Program tutoring client did not appear for her appointment.  Should I continue to pursue that until I know what I'll decide about treatment?  How well I'll feel in the coming months?  Or how lousy.   Will I be able to show up for her and pay attention to the lessons and to her?

And forget getting a job.  If we already have a job, somehow we get there and do our best.  And usually they cut us some slack.  But if we're new?

When is not enough information doing me a favor?

LUMPECTOMY FOR BEGINNERS Day 3

Took the dressing off before the shower last night.  I guess I was expecting something gruesome from a TV crime show.  Instead, the incision is just like a vertical pencil line near my armpit. With the steri-strips for decoration.

Today at noon another 24 hours is up, and I'm out of this Ace bandage.  I remember rushing to Starbucks with the even bigger bandage after the biopsy, convinced that what I needed was a treat.  No one even noticed my "flapper" look with flat silhouette courtesy of Ace.  There's a lesson in that somewhere about how I obsess on dressing for a coffee shop.

Today, per the surgery center's instructions,  if I'm convinced my reactions are quick as normal, I can drive.  Freedom! . . . .

Oops.  Feeling kinda sleepy.  May have to postpone that driving.

LUMPECTOMY FOR BEGINNERS Day 2

Yesterday's nap was too long - trouble getting to sleep last night, but no real pain.

Took off the compression (ACE) bandage this afternoon after I finally found the post-surgery instructions.  Then they say in #3 to take it off and also the dressing when I shower.  Oops.  I'm not putting it on again right now.

I'm not anxious to see how I look yet under the dressing.  Taking off the bandage I could see I'm smaller on that size now. Then after shower, supposed to put Ace bandage back on for another 24 hours.  Okay.

I haven't had any real pain.  My high pain threshold is a blessing, since most pain meds make me nauseous, sometimes very nauseous.  I feel sorry for the women who are taking all the high-powered post-op meds.

Taking this sweatshirt off will not be much fun since tendinitis is in this equation as well as the incision.

Surgeon told me I would get the results from pathologist in a few days, but on the phone he told my daughter it could take until my 2-week appointment with him.  (Despite seven years working for a malpractice insurance company, I suddenly have a mental block when I try to say or write "pathologist"  or "pathology.")
There were so many written cautions about the anesthesia lingering, that I didn't even want to venture out alone for my exercise walk today.

Yesterday I think they gave me some kind of pre-op sedative.  I don't remember even going to the procedure room.

There are moments when I feel detached from this - as though it's happening to someone else.  I wonder if other women have had this feeling?  Maybe because I just don't want it to be real.

Yes, it could be worse.  It could also be better.

LUMPECTOMY FOR BEGINNERS: the day, the wires, the cut

Back home alive and not too sore so far.

I salute the way the intake worker and some of the nurses in the hospital dress.  Nice, current civvies instead of scrubs makes me feel like I'm still on the healthy-people side of the world.

Wasn't looking forward to the placement of the guide wires for the surgeon's cutting map, but it wasn't bad.
The woman who placed them remembered me from the biopsy.  (The tech says she's the best.)  She asked the tech and me if we had talked about L.A.  The tech is a remarkable woman who should have a title far above tech for her accomplishments in the technical parts of this world in L.A. and beyond.  Is there some plan to the health-related people I'm meeting in TX?

Two weeks to the appointment with the doctor.

More later.

TAKSIM HOSPITAL PHOTO If only every hospital looked so welcoming

 Forum Studio’s (Chicago) design principal Erik Andersen has led the building of this amazing hospital, full of light and greenery.  Three cantilevered garden greenhouses!  How cheerful it would be to drive up there instead of any hospital I've driven up to.  The photo on Healthcare Design online mag really does look like a place I'd  like to live or at least visit.  It's big, really big, without being scary.  I wish I could send a picture to a bunch of design firms and hospital boards.  

I had to use the search feature but the photo and story are worth the effort.

Orchids to everyone responsible for this project.

IS THIS WHAT YOU WANT TO SAY TO DOCTORS?

JEFF HADEN ON LINKEDIN  "GREAT LEADERSHIP STARTS AND ENDS WITH THIS."

I don't have permission to quote Jeff Haden, so please, if you're on Linkedin, read this article today and don't stop til you get to the end.

"No one cares how much you know . . ." 

It reminds me of why I quit going to one doctor several years ago.

It also reminds me of another quote, from a doctor, Sir William Osler: "It is much more important to know what sort of patient has the disease than to know what sort of disease the patient has."

There is constant talk and writing on medical sites about how to get patients to take care of themselves and take their medicine when they leave the hospital.  Expensive programs and endless conferences on how patients can be made to behave.   Maybe this quote should be above the door of every hospital and on every medical website?  Just a thought. 

MY NEW FAVORITE PHRASE?

Okay, I admit that right now my favorite phrase is "it's nothing"  or "you're cured" at least in the health world.

But this morning I have another favorite that I've stolen here for educational purposes:

"...to provide an open forum for the exchange of ideas and disruptive commentary that changes clinical practice and health care policy;'  From the mission statement of GeriPal blog.  

Disruptive commentary aimed for change is what I often hope I'm giving in HEN BACKTALK, and what I fear being judged and criticized for.  So now GeriPal blog stands up and calls disruptive commentary a good idea, a mission!  

My thanks to GeriPal for their courage and courage they give me..   

WOMEN'S PLAGUE Still grasping at straws

Tuesday after leaving the surgeon's office, I looked up Breast Cancer Action SF, and read an essay by a woman who had done everything right and found nothing had changed:  No Cure.

This morning, her words were still in my head, and I remembered attending a reading years ago of James Engelhardt's play, Rattus Rattus.  It is a story about The Black Plague or some other plague that nobody could cure.   It seems people of the time were carrying nosegays in front of their faces, perhaps to distract them from the smells of death, or perhaps to ward off the possibility of the disease attacking through the air.  I'm sure the flower vendors had a thriving business.  And in spite of the fear and the death, somewhere in the background I'm sure a jester was singing:

Ring around the rosy
Pocket full of posies
Ashes, ashes
We all fall down.

Now centuries later we're pretty sure posies won't do it.  Instead, we carry around pink ribbons on our cars, our clothes, our gifts, our jewelry.  And there is a thriving business for vendors of anything with a pink ribbon on it.  Even on a mammogram machine!  But to be sure their business was thriving, until 2000 one company  that manufactures breast cancer medicine also manufactured a carcinogenic herbicide, acetochlor.

Hospitals give literature for "runs" and "walks" from companies that won't tell where the money went, and that still manufacture products that may make the plague worse.

We run, we walk, and on Mother's Day, we remember the ones the pink ribbons didn't help.

Too many still fall down.

BAD NEWS What we really, secretly think

Carcinoma in situ.  Yes, it could be worse.  We try to be glad it's not worse.

We try to believe that the medicine won't make our current life worse.  For years.

Isn't medicine supposed to make it better?

Are these side effects supposed to make me want this medicine?

Is this the best they can do?

Was putting a man on the moon more important than finding out what actually causes breast cancer?

Until we know the cause, isn't any medicine just sort of a guess?

BAD NEWS? MUST SEE A doctor remodels my mood

What do you do before a double mastectomy? Dance, of course - TODAY.com

www.today.com

In a six-minute video that proves Beyonce makes everything better, a breast cancer patient dances in the operating room with her doctors...

Please see her dancing photo on my Facebook page!  Or read more on today.com

BAD NEWS- How to Think About It Part 2

Apologies if I've told this before. ..

A story:

Maybe three years ago a journalist was talking to victims of a serious flood.  Four feet of muddy water had plowed into a poor neighborhood and into the people's small homes that we might call huts.  One woman and her family rescued a few belongings from the mud and were carrying them up a hill to dry out.  She told the reporter she was thanking God for bringing the flood in the daytime.  That if it had been at night, the family would have been sleeping--they would have died in their sleep.

It is humbling to think how far I get from looking at the big picture and finding the blessing.

BAD NEWS ways to think about it

The doctor's voice was so cheery that for a fraction of a second I thought the news was good.  How can someone be so cheery when the next sentence starts. . .There's cancer... . .

Someone said to me two days beforehand that the test result I feared might be a blessing. Trying to think of a blessing it could conceivably be.  Not coming up with much.  Well, it forced me to get closer to a supportive friend, and to enlist a kind of support I've known for almost a year that I should ask for.  And it forces me to write.

A story:   Once years ago my car broke down in the rain, in the dark, on a stretch of divided road where there was no place to turn around.  The police sent a tow truck, an eighty dollar tow.  The tow truck driver asked me if I couldn't believe it could have been worse.  The next morning I had an appointment with my wonderful counselor who said, Yes, it could have been worse.  And it could have been better.

I think of those words now.  It could be worse.  It could be better.

BAD NEWS How to Avoid Part 2

Val Jones, MD, on KevinMD.com  today

The one little question that could save your life

Also mentions a couple of interesting sites for employees to request

BAD NEWS - how to avoid

Just listened to Steve Gullans on "safe dosing" on TEDmed.  Focus on chemo and monitoring doses.

IF I RAN A HOSPITAL DESIGN FIRM - mammo day

I just read the most wonderful thing that made me want to be queen of hospitals.  In Inc.com, an article Ten Office Design Tips to Foster Creativity.  A main theme of the article is letting people be themselves and spend their days where they can be themselves and do their work their own way.

 Letting patients be themselves is perhaps one of the two things hospitals do worst. 

In one slide accompanying the article, there are lawn chairs, and people seated on the grass!  I would have risked fewer germs sitting in the grass instead of crammed in elbow to elbow on a long banquette with dozens of others in a stuffy room before my first day-surgery in L.A. county.  And I might have felt better.

Endlessly waiting in another part of the same hospital once, I had a stunning view of the elevator.

 Interviewing at Ping-Pong tables is mentioned in the Inc. article.  Supposedly it shakes interviewees out of their memorized interview speeches.    I can't think of a reason why there couldn't be Ping-Pong in the waiting area for mammograms.  A reminder that fun is supposed to be part of life?  Instead we are supposed to read quietly and remember that we're there to stay healthy, but we know damn well that the mammo unit exists only because somebody might be getting  cancer.  Otherwise it would be a fruit tasting room.

One more thing about the article:  it mentions the need for society vs the need to get off somewhere and work intensively.  Luckily, the local hospital in the main mammo waiting room has coffee and snacks, and people do chat a bit at the coffee counter.

 But if we need a little peace and quiet or privacy to digest the latest news from the umpteenth mammo film, where to go?  Hide in the ladies' room?  There is a smaller, glaring, and much less comfortable waiting room where one may try to get it together in full view of other women marching bravely toward the biopsy room.  

Who decides what these waiting rooms will be?  An interior designer who has never been called back for "more films?"  And interior designer who gets way too much input from a hospital administration that wants photo-op rooms where everyone is quiet and never cries or argues?  Kinda like detention?

I suspect I'll write or rant more on this later.