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.