TAMOXIFEN - the surprises never stop

Hot flashes shouldn't have been a surprise - they're mentioned on several sites.

But chills?  In Texas?  In summer?  Nobody's going to believe me.  I didn't believe it myself.  There's a picture in my head of me, looking more like a stereotype Granny, with a shawl around my shoulders.

It's August.  Next month more blood drawn--what are they looking for?  What do they hope not to see in my blood?

And why does my doctor think we won't test everyone to see which of us can't utilize Tamoxifen?  I remember those medpage predictions and the mentions of the role of medicine for stimulating our own immune systems.

The part I don't think about is - if I can't utilize Tamoxifen in my body, what do I do instead?

I wish  you health.

LUMBAR FUSION REVIEW - wish I had . . .

I did have a computer when I had my lumbar fusion, and I was using it.  For some reason, though, I just did the exercises from the rehab hospital and visiting PT, and the walking the doctor insisted on.

Information before and after was hard to come by.

Next week I will meet a rheumatologist for strength information.  I stumbled upon this web info I wish I'd sought out before and after fusion:

http://www.hopkinsortho.org/JHULumbSpineSurgeryGuide.pdf  Some good positions for daily work tasks around the house and around kids.  Note the bathroom sketches for brushing teeth, etc.

A few points:  I was about 10 weeks past fusion when I had to leave CA.  The doctor said I could fly to my destination but must not under any circumstances pack anything or lift.

In general, my surgeon was a bit more strict than Johns Hopkins.  Or perhaps the hospital guesses that people will not behave any longer than their guidelines.

Now, more than a year later, I still have some problems - not due to the surgery, but perhaps to delaying it too long.  One is squatting. My legs are still not that strong, and getting up from squatting is still tough.  To clean the bottom of the fridge, I just get down on the floor on my knees with a small rug to save the knees.

And a lifetime of slouching still leaves me careless of my posture - the most important thing.  Okay, the big confession:  I still sit far more than is healthy.  Far more.  And those poor nerves to the thighs didn't come out of surgery like a young woman's'

I'm still afraid of yoga for fear of any twisting - two spine joints are now doing the work that three did before.  Hopeful that the rheumatologist will calm my fears, give me some general ideas for exercise, and find me a PT who is completely familiar with fused spines, with my age group, and with sub-beginners like me who haven't got our strength back to the days before the spine problem got painful.

I want core strength--more than I even had in the past.  In my house at the beach, I could not climb the knotted rope that served as "stairs" to the loft.  (Though I could life my suitcase into the overhead.)

In general, my two big complaints:

One:  the brace never fit right because my waist is a lot smaller than my hips.  Just did not work, always rode up.  I suspect it was designed by a tall guy who was rather straight up and down. I needed it for a day recently, and surprise, it still doesn't fit.

Two:  I can't find a tough mat for floor work that doesn't exude carcinogens.

I wish you health.

Doctor, Please Don't Tell Me How I Feel

A week or so ago, a friend called me after going to her 6-month checkup for arimidex and some other complaints.  She was feeling frustrated and annoyed and simply unheard hours after that visit.

She had tried to describe to the specialist a feeling that her "head just didn't feel right."  I've had such feelings myself at times (tho I'm not on arimidex)  - not a headache, not dizzy, just some kind of discomfort.  Each time she mentioned it, the doctor commented and called it dizziness.  My friend would insist it's not dizziness, and remind her that we know how dizzy feels.  The doctor was still calling it dizziness when the visit ended.

Where does disregard start?  And how scary is it when the doctor may be thinking of treatments for a symptom we do not have?

I have had a similar experience with a specialist.  I told her that the manufacturer's leaflet said my medicine could irritate my stomach lining after taking it for a long time.  I was worried about that, but when I described my stomach irritation, she would interrupt and say, "From the gas."  At no point did she acknowledge that it might be the medicine. Or that I would know a gas pain when I had one.

Of course, it can be helpful if a doctor asks:  Does it feel more like ... or like.....?  And then listens to our answer.

Everyone wants to be heard.  My L.A. doctor told me:  It is important to be heard.  Part of the doctor's communication must signal to us that we really have been heard.  And that we know how we feel.

(And you may have noticed this re-interpreting from friends and relatives of cancer patients, who feel like telling us, "You're feeling scared, tired, worried,  or ..........." followed by advice.)

I have to ask, okay, ok, really rant, Please:

Don't tell me how I feel.
Don't finish my sentences.
Don't put words in my mouth--I'll know, if not right now, then an hour from now, that what you said is not what I feel at all!

How can the patient ask again to be heard without being combative?  I'm going to do a little research on this.  If I learn anything that helps me, I'll post it right away.

I wish you health.

HOSPITALS GET STAY-OUT-OF-JAIL PASS? WHY?

Rosemary Gibson on HuffPost Politics  July 23 re the Senate hearings on hospital fatal accidents: 

 "No hospital CEOs testified at the hearing. Were any called to appear before the committee? If not, why not?

One would be hard-pressed to find any hospital CEO who has ever been summoned to testify before Congress to be held accountable for preventable patient harm.  General Motors CEO Mary Barra has been hauled before Congress to account for at least 13 deaths. . ."

Elsewhere in the post, she asks why Non-Va hospitals are not being punished. 

***

 And I ask, if not the Senate, then who's in charge?

What happened to the vow from the Dennis Quaid followers that the hospital Board is responsible for all that happens?  And I answer:  The board doesn't have to answer to anyone!  

But at least the CEO might.  Yet penalties and fines by government agencies have not made a dent.  In a hospital where I've been a patient, the head man during the flesh-eating bacteria crisis moved on to another hospital after some very lame remarks.

In Texas, I'm told there is no way to punish dangerously bad doctors.  What's the situation in your state?  And have hospital CEOs even tried?  Have their salaries ever been cut?

Why don't we demand that the media ask hard questions?  

And how can doctors ask hard questions when they have agreed to be employed by the hospital?!

Breast Cancer: Gel tamoxifen effective, fewer side effects

A gel Tamoxifen effective for breast cancer, fewer side effects, says MNT article July 15 on a study at Northwestern U published in a journal of the American Assn. for Cancer Research.  The gel, applied to breasts of women 45-60 with DCIS was found to lower cell proliferation.  Also, it penetrates the breast as well as oral Tamoxifen, but less was found in the blood at the end of the study.

Thus the focus becomes the lack of danger of blood clots.  However, several other typical side effects were not improved.  I'm not qualified to give you accurate information on the exact chemistry of the gel - but your oncologist may have read about this.  

The next day, medpage  also had an article on the gel updated on the 18th, and with more detail.

Yes, we're a long way from popping into the drug store for some, but I love seeing efforts made on side effects.

I wish you health.

HOSPITAL ACCIDENTS - We're still not safe

ModernHealthcare: Hospital patients no safer today than 15 years ago, 

"Senate Subcommittee on Primary Health and Aging, which met Thursday with a panel of patient safety leaders . . .."  

Subcommittee chairman Sen. Bernie Sanders convened the panel to bring awareness to what some say is now the third leading cause of death in the U.S." 

Sanders mentioned a study estimating there may be as many as four times as many early deaths associated with preventable harm to patients as we thought in 1999!

http://www.help.senate.gov/hearings/hearing/?id=478e8a35-5056-a03elp.senate.g...  More Than 1,000 Preventable Deaths a Day Is Too Many

We deserve safety.  We pay for insurance that pays hospitals.

And when we make serious mistakes at work, there are consequences including losing our jobs. 

A few years ago, I worked with a woman whose husband was dropped after surgery, doing more damage, and necessitating repeat and additional surgery.  Could have been your dad, your spouse, your love.

How does your hospital score?  How can you find out?  Does the local paper reveal or ignore?

If you have a favorite Senator, you may want to urge them not to let this matter die when it's off the front page.

Do we march, or look away?

BREAST SURGERY - anesthetic and recurrence study

On Twitter, Marie Ennis-O'Conner called our attention to a study that compared two types of breast surgery anesthetic with likelihood of recurrence.

If you're not into Twitter, I'll try to put a link here:
http://www.ucd.ie/news/2014/07JUL14/110714-Type-of-anaesthesia-used-during-breast-cancer-surgery-may-affect-the-risk-of-cancer-recurrence-new-research-suggests.html#.U8HDpg0lVrs.twitter

This article is clear and easy reading.  If you haven't had your surgery yet, you may want to look at it.

I wish you Health.

BREASTS, Mammograms, callbacks - what should you be told?

Dr. Margaret Polaneczky practices at Weill Cornell Ob/Gyn.  On KevinMd today, she has an article called:  Dense Breasts on Mammogram?  Don't Be Afraid.  

I've had one of the callback letters with no explanation at all.  It referred me to my primary doctor for info - and of course, being a primary doctor who hadn't been contacted, he had no info on the mammo.

After more films, I waited for an hour, still in my cape, holding up my heavy breasts with my arm.

A doctor came  in, and without smiling, told me older breasts may have folds that obscure possible problems, so they may need more compression. Then she finally told me I was okay.

I am still wondering why there was no one for the tech to call  about using more pressure-- she could see I was old, and therefore had older breasts.

Regardless of your age, this doctor may stress something about breasts that you haven't read before, and want to know.

I wish you health.

Hand washing in hospitals - don't forget those visitors

Years ago, I went to the doctor with some nasty ailment - don't even remember what it was.  His first questions was : Have you been around any children?   I see this as a crucial question with implications for hospital infections.  We know that their teachers get all the childhood diseases again after being in the classroom for ages.

The old rules are out.   I was only allowed to see my grandfather in the hospital because he was dying.  A grownup held me, and I did not touch him.

Yesterday I looked up the visiting rules in some hospitals, and noticed a trend to assume kids will be allowed in, but may need an appointment. And kids of certain ages can visit without a parent. 
One article on visiting instructed visitors to use wipes on their hands before touching the patient. This article was probably not read by kids.  


Here' what I know about kids:

They will touch anything!  Then touch their face and nose repeatedly, then throw themselves into Mom's or Gran's arms and touch their faces, kiss their noses . . . you know that.

They have touched everything in the gift shop where we bought this stuff for the patient, and which we didn't wipe off.  They have touched the skateboard, or the bike handles.  Tiny ones will pick up anything.  Have you ever seen a visiting kid get a good scrubdown with wipes?

We can't always tell what the kid is incubating from his playground pals. And multiply the germs for people of any age who had to come by bus.

Here's my experience with hospitals:

They don't give you a wipe when you come in, (my grocery has a dispenser before you walk in,) and don't usually have a hand sanitizer dispenser in the hall (my library does.)

Hospital cleaning staff are often over-worked, under-equipped and under-paid.  Especially under-paid.  And tired. 

A nurse or aide who washes her hands on entering a room (which I haven't witnessed so far) will still be touching stuff other staff (including cleaning staff) have touched, like the gizmo that moves the patient back in the bed, like the like switches, like the bed rails. And touching what visitors have touched.

That Tylenol ad that said:  Just wash your hands should be on a marble plaque above every hospital entry.

Have you ever seen a nurse look at a visiting kid for signs of communicable disease before letting him into a patient area?   

/Why don't we hand people a wipe when they enter the hospital, even the Imaging area?  And why are we scared to tell people that the kid theyplan to bring in, must get wiped, and get a look-see by a nurse?    

People do what they do.  Wipes and sanitizers dispensers, and hallway sinks need to be OBVIOUS so visitors and staff can be seen if they don't use them.  And handing them out at the information desk is perfectly okay. Better to offend a visitor than my immune system.

Hospitals could learn from Portos restaurant

Portos was the hot place to meet and eat in Burbank before I left CA.  And it was the place my daughter and my friend Pat wanted to go when in town.

It was the most crowded place I'd ever eaten  But somehow, even if I wanted just to drink my coffee and wait for the rest of my party, I knew I would get a seat.

The incredible coordinators of this "no person eats standing up" policy went quietly through the crowd, noticing everything.  Every move, every order, every choice, every need. They moved table numbers to suit various size parties.  The customers were happy and were eating, not waiting.   One day I happened to notice the coordinators had a little plastic spiral leading to one ear - al la The Secret Service.

Now go with me to spine rehab, where staff calling to each other up and down the hall was the noisy norm.  What would it have been like with those little plastic spirals coming out of their scrubs, answering questions, directing them to this thirsty patient, this dropped call button.  A "no patient goes un-served policy" in quiet action.

I believe it was Dr. Harlan Krumholz who said we send patients home dehydrated and sleep deprived.  Is one solution to readmission just a little white plastic spiral?

Breast Cancer 1 six-month update - progress

The BC 1 six-month update short video is available now on medpage. 

Listening to Dr. Larry Norton's portion update made me wish I had more education.  (I read a bit about dose-dense Bc therapy on OncoLink.) Your own oncologist may have some comments on Dr. Norton's report on ovarian suppression with Tamoxifen, results possible this year,  and  on pro dose-dense chemo issues.  

What I was listening for, of course, was more from Lisa Carey, MD.  At the beginning of the year, Dr. Carey brought up our immune systems and also the differentiation among breast cancer cell types.  In this update, she again mentions cell subsets and the current consortiums seeking appropriate  treatment for various types.  It may be a year before there is more on that.

 Most encouraging was the news that in the next few months, we will have more news on how our own immune system's response to the cancer affects the treatment.  

STILL WAITING FOR AN APPOINTMENT? And waiting and waiting

Just saw a NYT article on this subject that reminded us that experts are suggesting more doctors. And some medical columns suggest alleviating the shortage by opening the gates (raising the bar?) to more doctors educated outside the states.

My favorite doctor of my life was educated in Canada.  He goes to the trouble of learning what works and what doesn't, and who gives great care, or doesn't.  Another favorite doctor of mine continued his education after coming to the US in two specialties. My first time in his waiting room, another patient said:  "You have the good doctor!"

But a doctor I'm thinking of leaving was not educated in this country.   And in my post about inadvisable surgical Bc biopsy, I noted that a survey had found one characteristic of doctors overusing this procedure is that they are educated outside this country.

So the quality care situation leaves me thinking that continuing to learn after arriving in the US is a factor.  And perhaps you suspect, as I do, that the other main factor in good care is the doctor's personal decision to learn continually what works.

Dare I suggest that doctors get enough information before they recommend a doctor new to the US (or any other doctor.)  Using the same hospital is not enough information.

Another doctor shortage factor:  I amazed to learn how many intelligent people think all doctors, not just certain specialists, are getting rich.  Primary doctors were having a hard time and getting poorer when I worked at CAP in the nineties.  And they're leaving their practice of medicine.

So:  What should I be doing about long waits to get an appointment?

1. Writing to the White House to get more pay and less keyboard "paperwork" for primary care doctors, so the good ones won't continue to leave medicine!

2. Writing to everybody I can think of to insist that doctors coming to the states are examined, trained here in methods that work, and monitored.  

3. Asking for referral to a different specialist if I have specific doubts about the current one.

4. Then praying that doctors who were trained here are still learning what works.

Everybody Is For Universal Design, but "not at our house right now"

There's a country song (or maybe several) on the theme: Everybody Wants to Go to Heaven, just not right now.  

And we're on record pro-universal design, but later, after we pay for our photo-op tub that is not non-skid, pay for our nostalgic faucet handles like the ones Granny had that she couldn't turn when arthritis struck, after we pay for our sport coupe that we couldn't get into or out of without help when we hurt our back.  

As far as getting out of that tall, tall, clawfoot tub when pregnant, I wish I could show a video of that here.

I worked for nine years in a business that also sold bath and kitchen equipment.  For every starry-eyed prosperous young couple who bought kitchens and baths there, there seemed to be several couples long into middle age.  Sometimes really long. . .

I sold some pots and pans to a woman in her eighties who told me she still skied.  She may be okay in the trendy bathrooms, but I remember snow as a lot softer than ceramic tile when  you fall down.

Pretty and and elegant, maybe even nostalgic, can be useful, safe, and universally right.  Bathrooms, kitchens, halls, and entries safe for any age and any state of athletic readiness (or lack of it) don't need to shout "old, pitiful, and crippled."  And don't get me started on hospital design. . .

Picture your favorite romantic, perhaps French, apartment building or town house.  If the guy who designed those lacy, intricate rails were alive today, couldn't he design a grab bar that doesn't look like it came off an eighteen-wheeler?  

It's just cheaper to manufacture a one institutional-looking grab bar that shouts "hospital," get it approved for use, and sell a billion of 'em.  It's the modern way, right?  

And after all, we're not sick right now.  We're not old.

HOSPITALS: A patient looks at bathroom design and groans

Seen in Healthcare Design June 25 - An article on improvements in hospital bathroom design.
A photo chosen to go with the article was a great disappointment from a patient's point of view.

Vanity: sharp handles at thigh height
There ARE sharp corners
A slimline basin would allow patient see in the mirror without glasses, for face washing or flossing Mirror should extend down to basin level, so a patient can see her own scar or whatever
No caddy for hair dryer or other items for patient who cannot bend

Needs hand rests or arm rests for patients on toilet or to help stand after toilet
There are grab bars for only one hand
(I made things more useful than this for myself in the rehab unit bathroom  - pulling a "potty chair next to toilet, not only for an arm rest, but because it is healthier to push down on something to help get up than to pull down on something.)

Bathing:
Nothing to hold onto en route to shower
No seat visible in shower within reach of telephone/hand shower
NO place for towels near the shower
No apparent depression to drain water and avoid slipping and soaking slippers
And please don't say the hospital has a portable bath seat for every bathroom - never happens.

Also, I don't see anything here about warm and cool bathroom temperature, and especially fresh air, which was scarily absent in rehab and a couple other hospitals.

It can be better than this.  And it should be better.

BREAST CANCER: When is it okay for a nurse to say this: . . (a rant)

In the medpage article a week ago, on lack of lymphedema awareness, Dorothy Pierce, RN, a radiation oncology nurse and author of a small study, is quoted as saying:

'"Either the surgeons are not [telling them about lymphedema] or the patient is not listening,"'

 I need to say:  any announcement that the patient is not listening is one announcement too many.  I have to wonder respectfully if perhaps Nurse Pierce has ever been diagnosed with breast cancer.

What could make the patient seem not to be listening?  Maybe shock from the news? Maybe too much med-speak? A million statistics?  Maybe information overload? 

With breast cancer, the voices have already started:  "You need to report to the Breast Center for more films; you need to talk with the doctor; you need to come back for a stereotactic needle biopsy."    You need to come back to the hospital and meet a biopsy doctor, (so I did.)  You need to, you need to, you need to. Long before lymph is in the picture, the overload begins.  We learn that the nurses and doctors know a lot of words we don't yet know, and they aren't all expert at explaining.  

After the biopsy, in my sleek flapper-look compression bandage, I went out for coffee.  But reality was closing in.  Then the phone call.  The doctor who had done the biopsy sounded so cheerful when she said "There was cancer."  Three words that can feel like the world changed - and maybe it did.  

And she said:  Call Dr. H., we work with him all the time.  Another doctor. Steriotactic biopsy (which I now know I was lucky to get) was only the first of a landslide of new terms, some  explained well, some not. We get a book, we get on line, we get written and audio overload.  We learn that no two famous cancer hospitals agree on everything.   

Luckily a kind survivor and friend said to me after my DCIS was diagnosed: 

 "Hearing that word cancer is overwhelming."  

As I've repeated here, I was so overwhelmed by the first day at the radiation center that I thought the simulation room was the treatment room.  No one in the crowd around me even looked in my eyes to see if I heard during the quick tour.    

We are paying attention to how to deal with our families, our bank balance, the idea of other new doctors we may have to meet. We are trying not to think "Am I going to die?"  

Only the doctor or other provider who is talking can be sure that a conversation, not a lecture, is taking place.  That is a skill.  Their long speech followed by "Do you understand" often provokes a Yes, as in "Enough!  Let me alone."  We may think we understand, then get home with more questions, too tired to try to get the doctor on the phone, if indeed our doctor talks on the phone.

We can't absorb a quickie medical school in a couple of visits. We listen. We try to pay attention.  

The great doctors and nurses, and people like my two beloved radiation therapists, know how to pay attention to us.  

Tamoxifen at 75

I already felt old some mornings before I filled the Rx, but not like this.  Someone told me Saturday I looked tired, and I wanted to say, Honey, you have no idea.  Instead I bought some suntan-look powder makeup.

The days are full of questions:

Did I throw the scissors away or is this the Tamoxifen?
Am I really this exhausted?  If I take a nap, will I sleep tonight?
Did I forget to return that exercise mat? 
If I hadn't read certain major hospital sites, would I feel this bad?  Or is it the power of suggestion?
Would I feel this way after more months off soy?  Or is it Tamoxifen?
Am I in the ladies room so often because of giving up soy?  Or is it old age?

Worse questions
Is this distractedness Tamoxifen or creeping senility?
If I stay on Tamoxifen, will this kind of thinking get worse?
With the pills and without soy, will I wake up soon looking 95?  
How will I get another job if I look 95?


And the very worst, most scary question:

Will my family think I'm getting senile?


What I Do When It's Bad:

I try to remember symptoms from before Tamoxifen.  For instance:

I was overwhelmed at the start of radiation-- thought the simulation room was the treatment room. I had hot flashes in the 90s, whenever I didn't eat on time.  
I had a few "tired spells" at times (just not so often) when I got here--I would just nap.
There were some aches and pains before I started taking this stuff.
Before and after spine fusion, I was so restricted--maybe my body is finally yelling for exercise.
I have arthritis, and it can hurt. 
I remember that I needed the suntan makeup before I started these pills.

What I Tell Myself:

Is it unbearable?  (Of course not.)  Am I okay enough for today? Yes.

My medical oncologist is the one I would choose out of a crowd; and I'm blessed to be alive.

I wish you health.

BREAST CANCER: Surgical Biopsy, Yes or No? and effect on lymph nodes

A medpage OncoBriefs in mid-June included excess surgical biopsies and what caused women to get them. 

According to the article, a large review of cases showed that various characteristics of doctors, including their age and where they trained, can be predictive; as can some patient group factors such as Medicaid.  (Do Medicaid patients have mostly these pro-surgical-biopsy doctors to choose from?)

I learned that the needle biopsy (after having one, I'm still not resigned to calling it a needle) was pronounced a reasonable standard of care back in the nineties, by such august groups as The American College of Surgeons.

Dr. Smith is quoted as saying:  "Still, too often in my practice, I see patients ... after having an excisional biopsy performed for diagnosis, when they obviously could have had a needle biopsy."

On the effect of those biopsies, later in the article Dr. Smith raised the topic that is everywhere I look lately, lymph nodes: '"An open surgical biopsy actually makes lymph node biopsy less accurate -- and lymph node status is the most important factor when making critical decisions about adjuvant therapy."'

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