HEARTBURN versus the bra Women Only A RANT

All my post-grade-school life I have just put on a bra, fastened up tight, and marched off to meet the day.

Now my acid reflux seems to be back with a vengeance, but my youthful bust is not.

I need a really humane, really understanding, SAVVY, probably female Gastro doctor who is not procedure-happy, who can help me FIND A (healthy) BRA. 

A bra that does not squeeze  my hiatal hernia, nor my stomach opening
A bra that stays in place if I have to reach the top shelf in the market
A bra that does not make me buy my tops from BIG & Tall Man, to hide bra problems.
A bra that lets my shoulders, not my stomach, do the heavy lifting.

If you know such a person, throw her into the car at once, and call me. 

This is an emergency.

HOSPITALS versus The healing power of the familiar

A few days ago, I found Patricia Moore's RIT lecture on YouTube.  Everything she said was what I had hoped to hear somewhere.  But I came away with two pictures in my mind -- pictures I wish would revolutionize the world of the patient experience.

The first was a woman, not young,  walking slowly, slowly up a hundred steps to a temple.  We learn that there is an alternate pathway, easier.  Why not use it?  Her daughter has said:  She's always done it that way.

The other picture will probably stay with me forever.  A small Asian woman asleep in a a healing facility, not on an institutional bed, but on her own mat on the floor.  Her piece of home.

I'm embarrassed by my initial reaction to seeing her sleeping on the floor. Embarrassed because my reaction is exactly the mentality that keeps hospitals so institutional!  Oh, no, the poor woman! My western mind was full of stereotypes.  She must be very poor, she must be in a poor country. It must be too hard down there.  It must be dirty and cold on the floor!   And then Dr. Moore set us straight:  The woman has been allowed to sleep where she wants to, on what she wants to.

Isn't that freedom?  She seemed peaceful.  Don't we read and talk about getting home from a trip and the joy of home in our own bed? But with very few exceptions, even the richest of us can't take our own bed, or much of anything of our own, to the hospital.  

 Perhaps no matter how sick you've been, you've always had a good bed in the hospital.  After spine surgery, I had a hospital bed so saggy that I could not lie on my side without holding onto the bed rail to keep from rolling back.  

 Not only our beds, but many familiar things are important to give us a feeling of adulthood, of capability,  of where we are.  I packed for my daily needs when I went to the three hospitals for my spine fusion saga.  Most of those things, I never saw again until I went home. I couldn't reach them, and no one knew where they'd been put.  Hospitals rely on our friends and relatives to sort it out.  Yet many cancer patients travel great distance to be treated in  hospitals their friends and relatives can't always travel to. 

Patients are entitled to some comfort. And there is no comfort like the comfort of the familiar.  But except for being cleaner, a hospital bed gives us the same familiarity as a bed in a homeless shelter.
  
People on the web write daily about what someone thinks are major problems hospitals have to solve.  Yet they may be wide of the mark.  Time and again, I read about diagnoses leaving patients overwhelmed and distracted.  

I believe a major problem hospitals have to solve is allowing patients to feel  more self-determining, less helpless, less lost in a strange land.

LUMPECTOMY - THE SEQUEL . . . Famous decisions--the other side of the story

I've read plenty about a surgeon and a film superstar and their double mastectomies. I know the surgeon had been diagnosed with breast cancer; we've all heard the superstar's reason.    I don't mean to downplay what they've gone through, but I also knew they could expect world-class care.  Now I read that their stories have started a clamor for voluntary double mastectomies.

I was thinking tonite (Thursday) about the dangers of what they have gone through, as well as the benefits.

And I have often thought before about why lumpectomy is simply called "breast preservation" or similar names.  To me, lumpectomy, when it's the standard of care, is the way to avoid an incredible amount of danger of infection, not to mention pain, dangers of major surgery, and lengthy, difficult convalescence.   I've shuddered at the stories:  frantic daughters of mastectomy patients tracking down nurses, and insisting, "Give Mom her shot.  Now!"   I'm glad I've been spared for now from being that suffering mom.

I had nothing to say with any authority about this question, so took a break, went to KevinMD, and lucked into an article by

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.  

I clicked The Crab Diaries, and found her cautions on that very subject - possible reasons not to choose a double mastectomy and when or why not.  She is a wonderful storyteller and you may want to read.that January 2 post, Primum non Nocere..

My suspicions are confirmed, and there are even more reasons to think very, very carefully about voluntary double mastectomy for yourself or someone you love.

LUMPECTOMY - THE SEQUEL . . . Christmas Day

Nurses all over America are working this morning, missing the wonder, curiosity, and excitement of any children in the household.  Others, are patients in those hospitals.  Or patients at home, alone or with family.

I am worried about my leg pain and wondering about the rest of radiation and other therapy.

A friend sent a letter saying she had spent much of the year in hospital, on IVs, because of an infection that probably started in the hospital during or after surgery.  Now she is in need of more surgery.

Another friend is still taking a long term painful medicine for breast cancer.

The three of us are blessed to be home this Christmas.

But medical science still has much to do.

LUMPECTOMY FOR BEGINNERS - The other F word

My friend was right.  It is a shock to hear the word cancer on the phone or in the doctor's office. My supportive neighbor says I'm handling it well.  I don't talk about fear -- but now I'm thinking about it

Learning about the steriotactic biopsy was Fear and resistance - the procedure sounded barbaric to me. And yet it went well and I had a good time at the hospital.

And I was able to compartmentalize about the lumpectomy.  I trusted the surgeon, and after all, I've had plenty of successful experience with surgery.  I didn't even feel fear beforehand.  Maybe the doctor's telling me he had said a prayer was a help.

Then the post-op two-week appointment!.  (The surgeon had told me when we met that he would recommend I see a radiation oncologist and a medical oncologist.)  I read the pathology report again, more thoroughly.  Nothing on the report, as I've mentioned, gave me any hope of avoiding radiation.  So after we talked a little about the incision and the size of the specimen, he gave me the paper with the oncologists' contact information, and his reasons for choosing them.  

 I went home and put the contact information sheet in a red file.  I talked with my neighbor, I blogged about when to call the radiation doctor's number.  I reminded myself that she couldn't make me do anything I don't want to do.

I focused my research, still a lot of it from Mayo Clinic, on radiation.  I read other women's stories, and I felt Fear.  I made a list of my radiation concerns and felt FEAR.  I quoted some things, and felt FEAR.   I included a list of medical conditions I already have, and the one thing I've shared with friends:  how many x-rays I've had.  

I copied statistics from Sloan Kettering on how much longer I would be free of cancer if I had radiation and certain long-term meds.  They were compelling.  But . . .

There is a pattern here:

 In spite of having lost a best friend to cancer, I'm obviously more afraid of the treatment than I am of getting more cancer.  Or is the Fear of cancer buried so deep that I don't feel it, and so huge, that I don't dare feel it?