Friday, February 28, 2014

BREAST CANCER . . . I was too hasty

The first few times I heard on my car radio the buzz-phrase Breast Cancer Awareness, I wanted to yell in parking lots:  We're already plenty aware of it, now get busy and fix it!

But yesterday morning while blogging, I remembered my last visit to the dentist.  The assistant wanted more X-rays but I told her no, that I was starting radiation.  She looked confused, so I said:  I have DCIS.

Frowning slightly, she asked:  What's that?  I gave her some kind of brief answer; I think I did say breast cancer.  So yes, there's still a need for awareness and education.

I'm not sure if the dentist heard me from the next little half-cubicle, but later after a quickie look in my mouth, he patted my arm and said something kind about "your problem."  

So yes, as I said a couple of days ago, people are still whispering about breast cancer and afraid patients want to keep it a secret.

But awareness is useless without analysis of the problem (including finding the cause)  and actively working for the solution.

And yes, I still want to yell in public places, but now I want to yell:  Get busy! Find the causes and get rid of them.  Fix breast cancer!

Thursday, February 27, 2014

AN ONCOLOGIST--On how to talk with us, and how to think about us. . from Dr. Salwitz

Once in a while, my California doctor would do a procedure on me in his office.  One day I went in with a lump right below my nose, in the spot where one had been removed decades ago.  I told him that two other lumps had come and gone since surgery, but I felt uneasy about the latest one.

Getting ready to remove it, he said:  You seem to put yourself into a zen-like state.  I told him it was just pure trust. 

My uneasiness about the lump was justified--it was a basal cell carcinoma.

So yes, I trusted him.  But what I always tell friends about him is:  He trusted me.  He always listened to what I thought was going on with me.  When I was right, he said so.

Don't we all deserve this trust from our doctors?  Dr. James Salwitz seems to think so.

This came by e-mail,  From Sunrise Rounds Tuesday the 25th

"I will need to understand his incentives, goals and how he makes decisions.  Otherwise, I am afraid his health will suffer because of mistakes, by him or me, born of poor communication.  
Curing his cancer requires not only that he understand me,
 but that I trust him."

Wednesday, February 26, 2014

WAS I IN THE LADIES ROOM . . when these cancer questions were asked?

Or did no one ask how Europeans can keep so many dangerous substances out of their countries? And why we can't?

There are businesses in the European Union that need to earn a living. So how did all those carcinogens get outlawed there, while we still breathe them, and eat them, and while our kids still roll in them when they play on somebody;s lawn?  Did anyone go over there and ask how they do it?

There are businesses in other countries that have stockholders to be pleased.  So why does food on their shelves have to be labeled?  Did anyone go over there and ask how they do it?

There are sick people in other countries who take medicine.  So why do we spend more than they do on health care, and spend so much of it on drugs that Europeans wouldn't feed to their dogs?  Did anyone go over there and ask how they got those drugs outlawed?

Did anyone ask The White House whom they've sent over to Europe to learn how we can get rid of many carcinogens as they have?

Or didn't anyone here want to know?  If we do know how they keep horrible stuff out, why aren't we doing anything about it!

I read a post last night that said the French elect their top leaders by popular vote.

We used to hear over and over about looking for an honest man.  I think there are plenty of them here. And I guess they are all afraid big business will overcome their political party.

So, why don't we look for a brave man?  One who will step outside the party system and say we won't tolerate this carcinogenic poison in our country any more.  

Tuesday, February 25, 2014

BREAST CANCER - why is it a secret?

When I came home from the first spine hospital, I had a walker.  People who hardly knew me called me up with their opinions on why I shouldn't have spine fusion surgery. Its' hard to hide a walker.  

When I came to Texas after the surgery and spine rehab, I had a cane.  A lot of people found out why I had the cane.  It's hard to keep a cane a secret.  

In November, I learned I had DCIS.  Call it what you like, the hospital doctor who did the biopsy called it cancer. 

Once lately, when a friend called to say she'd missed me, I told her I had been having treatment for  . . . then I hesitated and said a tumor.  Why did I hesitate?  The treatment is over.  Not much to give advice about, and she doesn't give advice unless asked.  

Breast cancer is not contagious.  It hasn't been considered shameful for decades.  Has it? We talk about bras that hurt and irritate us, and give us a shoulder ache.  We talk about breasts.  But they have to be well breasts.  If they're not, they become a secret.  

Recently, someone just waved her arms in the vicinity of a her breasts to show that a mutual friend had apparently gotten breast cancer.  I got the message, so why did we need sign language?

I've shared it with someone I know slightly, a man who had mentioned once that he'd had cancer and radiation.  I thanked him for talking about it aloud in front of others.  Now he's not afraid to ask me how I am when we see each other. It comforts me.  We can laugh.  And I can talk with a good friend who's had her treatment.  We can share about the preventive medicine we now take.  

Do we keep it a secret if, like me, we want to go back to work after a surgery and a series of moves?  Am I afraid a prospective boss will be afraid to hire me for fear I'll disappear into the hospital?

Someone once gave me a small tote bag with a slogan that's been associated with alcoholism (but also with being a worry wort I don't use it much because I don't want anyone to think I'm an alcoholic.

But I don't mind people knowing about the DCIS.  So why do I keep so quiet about it? 

Maybe we don't talk about it because we don't want to scare anyone.  But most of us are already scared, so I guess it's not polite to remind each other we're scared.

Go ahead and be scared!  Be scared that no one seems to be finding the cause!   

Be scared that US manufacturers are allowed to go on making dangerous food and drugs that are not allowed in the European Union.

But don't be scared to e-mail the White House or your congressperson to demand carcinogens be kept out of our food and our sunscreen and our lungs. 

Monday, February 24, 2014

TALKING WITH DOCTORS - My wishes come true, at least in one place

A few years ago, my primary doctor suggested a dentist who would be closer to home for me, and who had done some good work for one of his relatives.  I went for the initial appointment, agreed to the $200, and sat in the chair with my back to the door. 

I heard someone come in behind me, and papers rustling.  Puzzled, I asked, "Hello?"  

It was the doctor.  I made some comment, and he said to my back, "I like to look at the file before I talk to the patient."  

I wanted to say, "I like a dentist to speak to me when he comes in, not ignore me."  In the waiting room were large vases of flowers that I assumed were from happy patients.  I was not happy.  I never went back.

Today KevinMD had an article by Claire McCarthy, MD, called What To Do If Your Doctor Isn't Polite.  Of course, that's the first article I read.  And it made me very happy.

She begins by saying she's almost afraid to ask if a doctor who's new to us introduces himself, explains why he is there and what he is supposed to do for us?

She mentions her experience - that doctors who forget to be polite (to us) are are often very pleasant and polite except with the patient. 

She talks about teaching communication skills to residents at Boston Children's Hospital.  (Thank goodness.)  Mentions being themselves and thinking  of friends. (Then, what I think should be carved above hospital and doctors' office doors)  "... better relationships lead to better care."  

By then I'm really smiling!  I've blogged here what I liked about my favorite doctors, including my new surgeon.  They they felt like friends, sometimes from the very first meeting.  

Isn't it easier to accept what we have to do when we hear it from a doctor friend?  Isn't it easier to believe he or she is going to some trouble for us - not just announcing treatment A, and then leaving the room?  

If a doctor doesn't take the initiative, she suggests we hold out our hand, introduce ourselves, and ask the doctor to sit down.  

Okay, this gives me a little guilt nudge:  As we enter a doctor's office for the first time, or when a doctor we haven't met enters our room, have we already made up our minds he'll act like a stranger and be distant and formal?   

Am I ready to experiment with holding out my hand and asking the doctor to sit down?

Sunday, February 23, 2014

TAMOXIFEN - Life Without Soy

Yes, the doctor did say:  If it says soy, run.

Yesterday morning I returned some fiber bars.  At the very end of their ingredients:  soy.

My regular market is huge.  I went on a soy hunting safari, and discovered  I'd have to live on twigs and berries.  My standbys from Quaker Oats - cookies and Oatmeal to Go contain soy or at least the isoflavones.  So far I haven't found soy in the grocery's private blend instant oatmeal. 

Just about everything else I touched had soy isoflavones "for emulsifier."  

I baked regularly until I was in my fifties, and never needed an emulsifier.  Neither did my grandmother.
Now I read even chocolate bars need emulsifying,.  
Oh, well, the GI doctor says no chocolate, anyway.

I came home with a small bag of trail mix, some white crackers that are definitely not whole wheat, some fruit, a muffin, and a jar of jam.  

This morning, I went on a soy lecithin safari on line:

 From Sloan Kettering  INTEGRATIVE MEDICINE  Information about herbs, botanicals, ...SOY
Herb-Drug Interactions
Tamoxifen: Animal studies suggest that genistein, a soy isoflavone, may antagonize the effects of tamoxifen on estrogen-dependent breast cancer (MCF-7) (38) (39).

Why did I get on line to the medical sites again? Searching for a way out?  A loophole?  Instead, it's back to the days when a cheese stick in my purse would get me through.

Healthy eating.  Hmmm.

Saturday, February 22, 2014


Tonight, Friday, on The Crab Diaries, I read about the radiation masks for head and neck cancer.  It began with a wonderful story of masks, and their history in times of plague.

There were similar masks in the treatment room--white and new-looking and spotless. I wasn't brave enough to think about the technical aspects, but climbed back into my winter clothes and said goodbye. 

Then, last night, the facts: The mask must be perfect - as individual as her fingerprints. Sobering details, building a perfect mold on the patient's face and body.  The thought of being immobilized in them. That would be enough anxiety for some of us without the radiation. I wanted to turn it off.

But then the Diary sent me to another site: an artist and former patient has started a group that makes original art from the masks that patients bring home.  The transformed mask art is sold to raise money for other patients.

When it ended, I was embarrassed about any complaining I did about radiation, and inspired by the resilience and kindness of the "mask artists."  And especially, I know how much I have to be thankful for.

Friday, February 21, 2014

WILL THIS BE ON THE TEST? - a movie, a fantasy and a rant

In one of my favorite movies, The Doctor, William Hurt gets, shall we say, a taste of his own medicine when he becomes a patient.  

What if this movie were made today? What if it were made in the hospitals where I was an observation patient or inpatient for my spine problem?  What if I made the movie?    

A modern hospital, somewhere, USA

A female patient, Susan Bigge, MD, notices from her bed, there are many caregivers, not all nurses.  Each has a role, plays it, and leaves without knowing much about why she is there or her needs.  In some cases, without really looking at her.  

She slowly realizes that she is not the boss here--that she is somewhat at the mercy of anyone she might complain about.  So, one night when one of her medicines disappears from the computer, she doesn't mention her fears--if she had been asleep when it happened, she might never have noticed one pill missing each night.

She gets one good physical therapist who makes her do things she didn't dream she could do.  But when the doctor complains about her wheelchair causing pain to injured nerves, the therapist says "at least they put a pillow in it" and does not mention it to anyone in authority.  

She has to explain firmly to the other physical therapists what moves her doctors never allow.  

A male caregiver, one she has never seen before, appears one night tasked with administering her vaginal cream.  He has no idea what it is for or how to administer it, quickly creating an expensive mountain of cream on the bed.  Obviously, in his classes, this was not on the test.  

Flashback to the caregivers in certification training classes, being prepared to pass certification tests. When students ask about looking at the patient, asking what she needs, checking what she is allowed to do, or ever reporting her specific needs, the instructor tells them "We have a lot to cover here, just pay attention."   And a flashback to medical school.


My favorite part of The Doctor was when William Hurt, back at work, decided to make other doctors take the tests they ordinarily recommend for patients.  I loved that part. But in my movie, the changes the doctor makes will go all the way back to the classroom, where the lack of attention to the patient begins.

Thursday, February 20, 2014

IF I BOUGHT A HOSPITAL - Part 2 . . I'd copy these things

I was not an inpatient in this hospital, but they did some things I appreciated:

1.  Just about everybody smiled at me.  Real smiles, not the ones you get when people have been told to smile.

2.  I got some understanding and a couple favors when I was "called back" for further mammos.

3.  Outpatients really did get a beeper!  I did get to go back to my car for something, go to the rest room, etc.

4.  Since everyone is scared of needles, blood was drawn in the room with the lovely cot,  which was delightfully arranged under a big glass window with view of a million trees.

5. Radiation patients had reserved parking. On the rare days it was full, there was free valet parking and retrieval.  

6. The nurses in the surgery center were incredibly busy and also very organized, quiet, and friendly.  Everyone seemed happy.

7.  My two favorite radiation therapists were angels!  

8.  I got music by artist of my choice during radiation treatments.

9.  There was coffee and a few snacks in the big waiting room of the Breast Center.

10.  I got a real map that was accurate for going from the surgery center building to the blood drawing bldg.  (Alas, there was no antidote for the parking lot the size of a daycare playground where the blood was drawn.)  Make a note for when I buy a hospital. 

Wednesday, February 19, 2014

IF I BOUGHT A HOSPITAL (or, who bought these horrible beds, anyway?)

I am not a doctor.  But In 2012, a surgery center and three hospitals in four months gave me a lot to think about.  A lot  to be frustrated about.  

One article about Dennis Quaid's hospital activism said responsibility for a hospital rests with the board of directors.  If I bought a hospital, I guess there would be a board.  And of course, I would be the chairman.  Why not?

So, I started a little plan for things I would change:

1. Each board member will be "a patient" for 36 hours in a room I designate.  This member is to remain anonymous during this test.

2. There will be a list in our public and supporters' magazine of specific items we will accept donations and memorials for.  Period. There will be no lavish reception areas on this list. 

3.  No visitor's lounge can be more comfortable than a room where a patient is waiting to register or waiting for a scary test.  Visitors will not be drinking coffee in full view of a patients' waiting room.  That's just good manners, after all.

4  Rooms where patients wait must have a variety of furniture sizes so that no one is tormented by a chair.  A patient awaiting tests or registration will be given a beeper to enable him to get his pills out of the car, go to the rest room, or visit the garden. 

5. Inpatients and outpatients must have a view of nature - at least of the sky. When this has been accomplished, what space is left can be used for staff offices.

6. No money will be spent on a garden unless every patient can access it.   

7.  One specific person will be responsible for supervising, not just ordering, installations and repairs in patients' rooms.  

8. Staff must be seen washing their hands in the patients' rooms. And no one leaves a patient's room until the patient has water, if allowed, and a book, call button, and reachable phone.

9. A text or Email will be sent to each staff member when a treatment or test is moved to a different area, and each staff member will be  responsible for sending patients to the right place.

10.  All signage on the campus and on any off-campus street a patient will need to use will be reviewed and made useful. Strangers will be hired to test the efficacy of all signage, and rules of readability will take precedence over color and style.

I will follow up with a list of good things at least one hospital is doing on some of these issues.

Please comment with items you want on this list!

Tuesday, February 18, 2014


Garbage In, Garbage Out.  Just as a judge, doctor, or pilot can be inexperienced or just not competent, so can a computer systems or application designer.

I just read in ANGIENADIA's Kevin MD article, about monetary carrots and sticks and medical documentation problems.  She gives this description of a required electronic record posting:

Because advanced care planning slots in the electronic medical records were inadequate, undescriptive and user-unfriendly, I recorded my patients’ wishes in free text. To reflexively participate in our clinic proxy-form sweep stake, I would spend time transferring my free-text work into slots of electronic zeros and ones that count for money. 

The doctor goes on to remind us that the extra posting time was wasted and could not be spent on patient care. 

Though I'm no computer genius, I managed to use ACad and Photoshop in class.  

But when it came to my Digestive Health doc's  "portal," fifteen minutes in a do-loop (or was it a don't loop) round and round with no information and no chance to add questions made me determine not to go there again.  Ever.

In acute spine rehab, one of my meds disappeared from the computer, which was being manned by someone from another department.  (If I hadn't been awake, I wouldn't have known that I  would never again get that medication.)  I grew tense while she went again and again to get help with each medicine I needed before lights out.

Systems that will result in our accurate care and hopefully continued life must be easy to use, accurate, and free of moves that only a computer athlete can use successfully.

As patients, we must, must give strong feedback to hospitals and medical offices when we have trouble with portals and especially when we see that problems with electronic systems adversely affect our care.

Monday, February 17, 2014


I think my favorite doctors would say:

1. Look at the patient when you speak, no matter how many relatives are there.

2.  Talk with the patient, not about the patient. Example:  Her scar looks good is talking about her.  She wants to hear Your scar looks good

3.  The only exceptions to 1 and 2 are if the patient is in a coma or unconscious. 

4.  Talk with the patient like a friend.  

5.  Patients deserve respect. Even popular auto mechanics talk to the customer after operating on the car.

6. Some diagnoses and diseases are overwhelming for people of any age or intelligence.  The patient may not be able to think what to ask until later. Talk on the phone, at least for 20 seconds.  Even a great  nurse or staff member may not always repeat exactly what the patient asked, or your answer.  

7. Try to avoid initials and unnecessary long words.

8. Patients don't sue doctors they like.  Really.

9. Even if you're training a nurse, take at least a minute alone with the patient. 

10. If other doctors or practices aren't sending you necessary info, let the patient know you're stepping across the hall to call and straighten it out. It reassures the patient and shows you're taking care of him.

To all the good doctors in the world, I wish you respect from us, the patients. 

Sunday, February 16, 2014

DCIS - a month after radiation.

I always thought : you get the lumpectomy and that's over.  Then you get the radiation. Then that's over.  Nope.

I went into radiation with a healing lumpectomy incision. After some radiation, the incision got red and looked a little puckery. (A favorite radiation therapist told me the radiation sometimes makes the incision look better.)

Since my surgeon had only sent me to meet the radiation oncologist, he was surprised at my two month followup to learn that I'd already had radiation.  By that  meeting, we both thought my incision looked good.  When I mentioned the little jabs of pain in the breast that seemed to be near the surgery site, he reassured me that happens and might go on for awhile.

I had hoped to meet the medical oncologist before the surgery checkup, but hadn't been able to work it out. The surgeon agreed that I could call him after seeing the medical oncologst. 

The medical oncologist looked briefly at the radiated breast, and I thought I saw a quick frown.  He asked me what I had used and I told him Eucerin, and that while the marks and stickers were on, I had used the Eucerin Aquaphor,which he was familiar with.

Now I look at the breast and the nipple is still red and sensitive.  (The nipple had been removed for exploratory surgery decades ago, but that my or may not be  significant now.)

Also, my old faithful dermatitis is back under my arms, and for some reason, I have some itching along the top of my breast near that area, as well as under my bra band.  Since one radiological oncologist said cortisone was okay, I'm using it on the nipple and breast itch, as well as I always do on my dermatitis. Also, when putting on the cortisone, I feel that the area around the incision, which is the area of the boost, seems to have less sensation than the rest of the breast.

I guess I'll do another anthropology dig through the pile of radiation literature from the Cancer Center, and see if there are clues.  One big remaining question:  what exactly was on that "release" I signed after radiation?  Does that mean I never call the radiation oncologist for anything?  Guess that's okay.

Tuesday, if there's no improvement, I'll call for an appointment with the surgeon.

Saturday, February 15, 2014

A DOCTOR WRITES 7 WORDS - Music to My Eyes; Hope for Our Health

Power to the people: Patient in command

Friday, February 14, 2014

CANCER - a link

My pal Larry sent me a great link this morning:

Carmela Does Chemo on  The whole topic is scary for me (though I'm considered cured without chemo) but her writing drew me in.  She has kept her sense of humor and writes about reaching for and keeping her patience. And  there's a brief mention of dealing with "customers" at her job who ask how she's doing.  

It's worth reading just for her courage in telling all.

The passage about waiting two hours for her chemo, and her question to the others in the waiting room makes me want to keep calling, nagging, yelling for a patient voice in patient care! 

Thursday, February 13, 2014

CANCER TREATMENT - Who's the boss? . . . Part 2

Patient power.  A voice.  It comes in unexpected places.  Or do we just hear about it when it's part of an interesting story?  

Yesterday I read an article that started with a story about a woman patient on the California Redwood Coast.  What's interesting about her?  She's called a patient representative.  Not in a nationwide, highly publicized mega-organization, but in a doctor's practice!

The doctor has weekly round tables, including patient representatives, as part of a program to improve outcomes.  One day, this woman went home and outlined her five-point plan that could improve the practice.  She presented it at the next round table, listened to the reactions, answered them, and got some respect.

I want that.   

Why wait for a hospital patient feedback survey that will probably never present our plans and suggestions to a doctor or administrator?

I've read that many hospitals do have patient advisory boards. I've lived in seven cities and never heard of one.  This practice in this tiny town has one.  

I want that. I want patient representatives to have real voice and real contributions that get accepted and tried.  

Don't you?

PS My apologies - I believe I read the article in MEDPAGE daily headlines, but it's lost to me right now. 

Wednesday, February 12, 2014


MedPage today headlined a 25-year Canadian study showing that in certain age groups, mammograms found  few more actual breast cancers than manual exams, made some misdiagnoses, and didn't prolong life.  This reminds me of some posts from Breast Cancer Action, San Francisco, as recently as October.

This Canadian study seemed, to a layman, well conducted, well designed, and well reported.  But this is the real world for my age group and maybe yours today. . .

First, I hadn't had a manual breast exam for years until after my call-back mammos resulted in a biopsy that showed cancer.  Then the surgeon did a manual exam that seemed to be in the area where the abnormal cells had been found.  By then, surgery seemed to be inevitable.  I still haven't asked him if he could detect anything manually!

Second, my in-the-shower breast exams have been hasty or neglected more often than not.  Besides manual exams by physicians, the study mentioned "usual care in the community." I'm betting that also included self exams.  So mammograms are better than doing nothing.

Third:  Who am I comfortable with for a breast and pelvic exam?  In CA, I was totally comfortable with my doctor, and I've had reasons to prefer a male doctor, but there are some males I wouldn't be comfortable with giving me a breast or pelvic.  With Tamoxifen, I'll have to ask myself that question as soon as I meet a doctor.  

Fourth:  Mammograms have been almost automatic for so long, do all primary physicians know all there is to know about manual breast exams?  I don't know a gynecologist here or in CA - do women go to gynecologists for their pelvics?  Do gynecologists even do breast exams? 

Who you gonna call?

Tuesday, February 11, 2014

DCIS: Was I a Medical Illiterate?

I recently read an article in Proto magazine called Comprehension Test, that described some tests given to people who possibly read below sixth grade level, to see if they understood possible written directions about their treatment and medications.  

But there was more:  about people who are not medically literate, and a few words about people who are old, sick, awakened exhausted in the hospital, and so on.  (Of course, I bristle and snarl when someone groups people as "old."  One may be bewildered, hard of hearing, or with grey hair a few birthdays before middle age.) Oh, and there was a tactful mention that an educated person may still not be medically literate.

When I wrote to the editor, I called myself medically literate, because of where I've worked, what I did there, and research I do. 

Then I described the day I went to talk with a radiation oncologist and ended up with marks on my breast, pounds of literature, a permission slip I'd signed, and the vague idea I'd already been in the radiation treatment room.  Too many people telling me too much, bewilderment, sensory overload, and serious "overwhelm."  

Neither the books, the web, nor the video they showed prepared me for what would really happen that day and on one subsequent treatment day.

Do other women really search the net and make a good purse list of questions on breast cancer before they report for the "callback" mammograms?  Am I the only one who didn't demand to know exactly what would happen in the radiation center that day or later?  

How much medical literacy are we responsible for?  How much should the doctor be aware of what we are able to take in?  Who is responsible to be sure a conversation and not a speech is taking place?  

Long ago, my beloved California primary doctor told me:  It is important to be heard!  But this is not the first time a diagnosis was so serious that I needed the doctor to make sure I knew all that would happen next.



Monday, February 10, 2014

A RANT ON PCMH ("Patient-centered medical homes")

This morning brought up some medical groups I'd never learned about: Patient-Centered Medical Homes.  I'm very unhappy about what I read and what is being spent.

I had occasionally seen a website on these "homes," wondered what they were talking about, but never checked into the concept and how they work.  More important, I don't even know how to keep from getting into one by accident.

According to Jan Gurley, MD's article, the PCMH patient loses her ability to change primary doctors!  Not a chance.  I've gone without some things to keep the Medicare supplement that allowed me to stay with my beloved L.A. area primary doctor.  Why would I give up the ability to choose?

The footnote said Dr. Gurney blogs on DOC  GURLEY.   The link sent me to a website:

I'll be doing more research on this topic, but first I'll be writing to the White House about how scary this concept is so far for me.

I wish you health.  And medical care freedom.

Sunday, February 9, 2014


At least one hospital has given me a "patient's bill of rights."   I can't find a copy right now, but I remember one of the rights was "the right to be treated respectfully."  

My experience is that the doctor's office staff is often far less respectful than the actual doctor.  Being scolded, even in what seem to be careful word choices, is still being scolded.  

In my new state, Texas, I have become a patient of several new doctors and a dentist, plus some radiation therapists.  I have sometimes been unhappy, but I had to move forward since the diagnosis of DCIS.  And once, a few days ago, I was furious at a doctor's staff member.

Things that make me unhappy:
Doctors who refuse to talk on the phone.
Printed procedure prep instructions with some steps left out.
What seems to be plain carelessness in prescribing.
Not listening to my exact symptoms and the way my body feels.
Staff members scolding.

I'm reminded lately that a patient and a doctor may have personalities that don't mesh, or philosophies so different that the patient is uneasy.
(I don't have to decide if the doc is a jerk or the staff needs behavior modification.)  I just have to leave.

So now  it's time to build a happy medical support group, as I try out Tamoxifen and care for other medical concerns.   

My lumpectomy surgeon, a really kind, friendly, and skilled man, recommended a medical oncologist I like so far.  A friend knew an ophthalmologist group I like.  A close friend likes her primary physician. Decisions.

What I say after I meet a doc or radiation therapist I like: 

He talked to me like a person!
He knew in 30 seconds it was my spine, not my leg!
In five minutes, he took my anxiety away!
We can make each other laugh even when discussing cancer.

Have to quote Sir William Osler again:  It is much more important to know what sort of patient has the disease than to know what sort of disease the patient has.  

If only that would fit on a tee shirt.

Saturday, February 8, 2014

WHO REALLY KNOWS How to Take Care of Ourselves

If you are a patient;  if you are a patient who was taught to smile and always follow the rules; if you believe you are taking care of a patient. . .

Please read yesterday's (Friday's) PULSE Voices from the Heart of Medicine:  She Sits on the Curb in Her Hospital Gown.  That patient inspires me.

Since radiation is over, I'm considered "cured" of DCIS.  But to keep breast cancer away, I should take Tamoxifen for five years.

And, for the rest of my life, I must dare to do what I know inside is taking care of myself. Please dare to take care of your soul and your need for pleasure, no matter how it looks to others.  And remember laughter is healing.  So is singing.

If you are a caregiver, let your patient dare to live in a way that takes care of himself, or herself, not just the hospital way.  Please read She Sits on the Curb. . .


Falling asleep is not easy without my diphenhydramine.  Giving up my Zone Perfect soy bars is easier.  I've switched to "Oatmeal to Go" for now.  The soy milk is down the drain. Oh well, without it I'll probably drink less decaf.

Friday, February 7, 2014

DCIS - I meet the medical oncologist


The waiting room smells like the winter clothes of a hundred smokers. There is no exhaust ventilation, just heat.   Above the check-in window is a sign with lots of circled words and underlining:


Apparently smoke odor is okay.  I would opt to wait in the hall, but I have to fill our more papers than I've ever seen before.

The woman in the next chair talks with me for awhile and suddenly says:  "You have the best doctor!"  Then my name is called.  I've gained weight, no big surprise.  My blood pressure isn't too high for a visit to another oncologist I've never met. 

Finally I meet him.  He is nice, and outlines the whole DCIS story quickly, without talking down to me.  I admit I'm interested in Tamoxifen, so before long we're on the subject of side effects.  Leg pain of course comes up.  I mention the nerves to my legs, and he says: "Tell me about the spine fusion."  He's a good listener; reassures me:  "In 17 years of doing this, I've never seen a case of endometrial cancer."  

My suspicions were correct:  No more diphenhydramine, period. Find something else for the allergies and sleep.  And no more soy bars, soy plants, soy anything. So phytoestrogens are dangerous.  His exact words:  If it says soy, run!

He motions me to sit up on the table, listens to my heart and lungs, looks at the still-pink breast. 

The word on Tamoxifen:  "If you're going to have trouble, it will be in the first month." He tells me to wait a couple more weeks until my sinuses settle down and I'm myself.  Then start taking the pills.  Come back in six weeks.  

It was pleasant.  But it was the second doctor visit in two days about DCIS.

I get some soy-free food and go home very tired.

Thursday, February 6, 2014

CANCER - WAR AND PEACE . . . and my Rant

This morning's internet made me think about yesterday's rant.  No, I don't take it back!

However, I closed yesterday with a dig at the government, or all governments the WHO "cancer surge" report involves.

And today, an email that was sent yesterday tells me that CVS is taking tobacco products off its shelves this year.  Even JAMA was supposedly excited about that.  I felt corrected for assuming only governments will fight the cause.  This is an actual business taking action on a cause of cancer.  Then I clicked Medpage  later, and read that their reporter seems to think the CVS move is just publicity or something.  

Meantime, I read Sunrise Rounds where Dr. Salwitz discourages the "war" images of cancer care.  

And two minutes later, a report that one weapon against breast cancer, brachytherapy is not as proving as effective as direct beam radiation, which I had.

It's asking a lot for patients, including yours truly, to achieve the peaceful elements of immune power, even peaceful assertiveness, but also to endure our weapons against cells inside us that have gone rogue.  And in our spare time, asking ourselves to get tough, really tough on causes of cancer.   But if we don't . . .

Now, a quick shower, and I take my questions in hand and drive off to meet the medical oncologist - for war and peace.

Wednesday, February 5, 2014

LUMPECTOMY FOR BEGINNERS - Post - surgery followup and a Rant

This afternoon, the surgeon.  My incision looks as good to me as before radiation.  We'll see what the doctor says. I wanted to see the medical oncologist before today, but it didn't work out. Time seems to slip through my fingers since the lumpectomy.

Now for the Rant:  Last night I read the Yahoo news blog on the World Health Organization report that cancer will have a huge upsurge worldwide in the next two decades.

The blog said nothing about what the WHO bases this prediction on. 
 Diet, exercise, and early detection were mentioned as possible prevention for half of us.   Alcohol and tobacco were mentioned as causes.  But tobacco use has widely declined here.  Will we all start eating more fast junk, sit more than we already do with our horrendous commutes? 

Nothing about the environment!  Not a word about carcinogens around us and in our food and our sunscreens and, and, and.    

There was a photo of a cancer patient resting.  He didn't look as if too much red meat and too many martinis were his lifestyle.  Much of the world does not get a lot of fast food, alcohol, lengthy commutes, and lolling in front of tv.  Their air is not full of vehicle exhaust.  What gives them cancer?

My main Rant? Calling early detection "prevention" always makes  me furious!  We can detect a polyp and prevent some cancers. But detecting cancer means you've got it!    

Early detection of breast cancer in situ doesn't prevent cancer. It finds unhealthy cells.  We may need surgery and perhaps radiation to get what is detected. We hope that's all of it. If not, we hope our own immune systems will kill some rogue cells. We may take preventive medicine for years, enduring the side effects. And we wait.  

Some of us do believe that exercise and good eating habits help keep cancer away or keep it from showing up again.  Dr. Salwitz believes in exercise, and I believe him.  

Some of us, like me, believe the science published in books like The Immune Power Personality, and we work on our minds and behavior to help keep us healthy.

But some of us want to know what our governments are going to do about environmental causes.  Some take action with petitions and letters about pollution.  Obviously, that's not enough!  

Tuesday, February 4, 2014

CANCER TREATMENT - Who's the boss?

Today Jeff Haden popped up in my email from LinkedIn to announce an article called:  Your Boss is Happier Than You.  Maybe I read it because I've had a couple jobs where I was rarely happy.  

I saved this quote - hope he doesn't mind my using it here.  

Engagement and satisfaction are largely based on autonomy and independence. Just like a boss, I care more when I'm in charge and feel empowered to do what's right. 

That reminded me of how many articles I've read on medical sites that complained about patients not following their medication plan. And hospital committees formed to make patients follow their plan!

Since I needed a post for today, I went to KevinMD., and found a different kind of article:  When Something Natural Does Indeed Work, by A Country Doctor, MD.  It is a story about cooperation between a doctor and an older male patient.  Real cooperation.  The patient felt some of his medications were doing him harm.  They discussed it, and planned what to try.  His health soon suffered from giving one up. Instead of insisting, the doctor came up with an alternative, a medicine I've heard of, made from a plant.  Success!  

On the DCIS treatment, I've been lucky.  The surgeon suggested, did not order, that I meet a radiation oncologist and a medical oncologist. The radiation oncologist insisted I believe her about unlikely side effects.  But she did say radiation was my decision.  

When the see the medical oncologist this week, I'll have to talk about some medications I take that supposedly don't agree with the medicine I think he will recommend.  And I'll remember the problems others are having with one adjuvant medicine.  I want us to cooperate.  And I do want this to be my decision.  

I want to go back to real life, and be in charge, not in fear.  


Monday, February 3, 2014

SURVIVORS - The important three-letter word

 Doctors have told me to exercise, take my pills, and wear a mask when walking in the Hollywood hills.   

I don't remember even my favorite CA doctor prescribing fun.  But he probably did.  I know he has an absorbing interest in addition to medicine.

In Henry Dreher's book, The Immune Power Personality, Dr. George F. Solomon's name comes up again and again.  I Googled him for specifics.  In short, he was a pioneer in discovering the link between our minds and behavior and our immunity.  

The University of California's memorium for Dr. Solomon uses the phrase, "brain, behavior, and immunity."  In his autobiography, with his list of positive values, he included "having sports cars."  

When mine was stolen, I didn't replace it.  Hmmm.

In talking with Dreher, Dr. Solomon listed healthy traits he has observed.  Number seven is:  The capacity for pleasure and play.  

He is quoted later in the book as saying, "And some people don't know how to play.  I believe that people need a balance among love, work, and play in order to stay healthy." 

Do we dare ignore that?