WAITING ROOMS - The good, the bad, the ugly

For Doctor Kuraishi, I knew I'd have to wait.  I knew it might be a long wait.  I knew it would be worth it. At times, I called ahead and asked how far behind they were.  (The front desk staff is very small and busy.)

The patients often talked with each other - on one visit, I heard a lot about basketball and got to tell about a book I was trying to write on Indiana, the spiritual home of hoops.  From the nineties until I left CA, I only heard one person complain about this doctor's waiting time. (If you contact me, I'll tell you who.)

Why did we wait?  Because he never walked out on us in the middle.  He listened respectfully and kindly.  If things were tough, we could usually get a hug.  When spine fusion was inevitable, I tried and tried to get him to assist, but it wasn't possible.  On two nights after the surgery, he came to  see me in the hospital at almost midnight.  A nurse asked who he was, then exclaimed: A doctor?!  At the hospital at midnight!?

On the other hand, I've posted before about that dreary patient waiting room in a CA hospital that opened into a five-star luxury waiting room for visitors.  

In Texas, my breast surgeon was late once because of a serious emergency.  I just put my feet up in his exam room and read my book.  He apologized three times.  Again, I knew waiting for him was worth the time.  He is a kind and calming person.  And by the way, his waiting room has a big sofa with pillows that support my back!

In my new state, I also have four more new doctors.  And I've met a couple of others I kinda wish were my doctors.  Oh, and an eye doctor and a dentist.

Without exception, the chairs in their waiting rooms are too big for me, and give me definite leg pains.  The result is a lot of pacing. 

So far, I've had three really unpleasant waiting room experiences in TX that I want to talk about.  When I was new here, some very confusing directions and a lack of street signs made me late for an eye appointment.  The staff punished me (that staff that had given me the directions) by making me wait until the entire waiting room full of people had seen the doctor.

The other two waiting rooms (one of which belongs to a delightful doctor) definitely, absolutely need HEPA air filtration.  Recently two of us waited in the hall because of overwhelming third-hand smoke from one patient.  In the other waiting room, last winter, the third-hand smoke from heavy winter coats was terrible for me, for chemo patients, and for one patient's baby.  How do we talk to a doctor about this?  

* * *

To this day, I literally don't remember any pains from Dr. Kuraishi's waiting room chairs.  If I thought my cough was scaring people, I waited on a backless bench in the hall.  It was always worth it.

Breast Cancer, New diagnosis and WAY too much advice

Starting to write more about "who's the boss" of our treatment, I was looking for Dr. Salwitz's Light in the Darkness post.  Instead, through the magic of capricious search engines, I found his funny  and useful  Back to School Cancer Quiz.  I wish I'd found it on the day I heard the word "cancer" over the phone, and realized it meant my cancer, in my  body.  And she didn't say maybe.

I read thru the quiz, got some smiles (as he clearly intended, along with information.)  And there was my pet gripe in one possible answer to number 4: You know you're a cancer survivor when:

You don’t have the urge to choke the person who says,

 “All you need to beat cancer is the right attitude.”

How do we deal with advice like that, or any advice from someone who hasn't had cancer or shouldn't give advice?  

Random thoughts:

Smile sympathetically and say, Oh, dear!  I didn't know you had cancer, too!  Oh, you poor dear! 
Announce that you have to go to the ladies' room.
Exclaim that you were supposed to call the doctor five minutes ago.
Say Mmmm.  
Drop some stuff out of your purse.  Others will rush to help and perhaps distract the adviser. 
If there are people around, look at someone in the distance, call out I'm sorry! and move in that direction.
Change  your email address.

Remember, these are just random thoughts.

Then, if you need some laughs in the middle of information overload, I suggest you read Sunrise Rounds, Back to School Cancer Quiz.  I'm going back to it right now--he gives good info.  

This one's for Mary

BREAST CANCER - guilty as charged

Most Breast Ca Patients Fall Short on Exercise says medpage today.

And I'm one of them.  I made a copy of Dr. Salwitz's Breast Cancer Patients Rest in Peace.  I hung it up.   I blogged about it.

 I set my phone "stopwatch." I added up my walking minutes.  I started tutoring, I started Tamoxifen.  I walked less. 

My feet started giving me trouble.  I walked less.

I bought a new copy of Strong Women Stay Young.  I bought a new exercise mat that exudes carcinogens. It's in the car so I can return it.  Meanwhile it exudes probably a lot more carcinogens in the hot car in TX.

And one more Tamoxifen pill and one more unexplained but very uncomfortable pain - the arch of one foot, a place on right forearm that was injured in 2012.  And these are excuses.

I have a left arm which can lift a 3-pound barbell easily.  

Yes, I'm repeating my recent posts!  No, I don't have tv here to dilute the boredom.  

A therapist once told me to expect full-on and full-off days.  Too many full-off ones.  Where to start - I'm going online to see what kind of electronics will let me listen to music as I do a few moves with ankle weights, without disturbing family at work in the "office."

Any start is better than no start.

I wish you health.

Breast Cancer - more likely to survive? What's the catch?

"Women diagnosed early are more likely to survive."  Charts and lists often carry those words.  But I've  still been puzzled about what they mean for every woman diagnosed.   

Almost two years ago, in another state, the sweet young man across the courtyard gave me a party favor on the night his sister celebrated five years free of breast cancer.  In other cancers five years means you might have a normal life span.  We celebrate, as we should.  But breast cancer is different. 

Why do I bring this up?  Because I still have 1 3/4 breasts.  And although I'm old, my diagnosis made me aware that I'm just starting to live!  

An older study explained on the California Breast Cancer Research Program site clarified that phrase that always sends up a red flag for me: "no difference in survival rates."  They mean, let's face it, even diagnosed early, we still may not live a normal life span. 

WHY NOT?

CBCRP* cleared up my fuzzy thinking on this (which before Tamoxifen was maybe just plain denial.)

Medical treatments we know about don't always work.  Here's the math:  Jane Doe is diagnosed, gets the best that the best can offer her.  It doesn't work.  She stays alive for six years. She goes into the five-year-survival statistics.  But she's deprived of a normal life span.

Before we invent more medicine, we need to know why the treatments we have can't give women back a whole life.  The new study on women who can't metabolize Tamoxifen completely, and what to do for them--that's a start.  The emphasis by women like  Lisa Carey, MD, on individual women and the possible differences in breast cancer cells - that's another start.

In California, people can route their tax refunds into Breast Cancer research.  What can the rest of us do?  Send money to Mayo Clinic?  Call our state legislators when we can't sleep?

I wish you health

*http://cbcrp.org/publications/papers/BCinCA/page_12.php

BREAST CANCER NEWS: Saving Some Lymph Nodes

Sitting through the talk two weeks ago on physical therapy for lymph edema, I was sharing the sentiments of some patients:  "Why can't they do something else instead of taking out lymph nodes?"  No oncologists were present.  It hadn't been on my mind (since I have enough trouble with my present treatment issues.)  But now I find: 

There are new guidelines on uses of sentinel node biopsy from the American Society of Clinical Oncology.  In some situations, these guidelines sound as if axillary nodes can, and should be saved.  

These are the links I followed:

https://community.breastcancer.org/forum/78/topic/774827?page=2
http://www.medpagetoday.com/upload/2014/4/3/JCO-2014-Lyman-JCO.2013.54.1177.pdf
http://jco.ascopubs.org/content/early/2014/03/18/JCO.2013.54.1177.abstract

You can go as deeply as you like into the specifics and make your own interpretations; these new guidelines may give some of you hope.  May give you a reason to get a second opinion!

I wish you health.

Breast Cancer Treatment: Does It Need a Report Card?

I was in a room recently while some breast cancer patients and "survivors" listened to a Physical Therapist talk for over an hour on dealing with the lymphedema from having lymph nodes removed.  I may have been the only survivor there who still had all her lymph nodes.

When I realized the whole presentation would center on lymph problems, I was tempted to leave.  But I stayed because nobody can predict my future after DCIS and Tamoxifen.

I am not impressed with what medical science has done for these women.  One had surgery years ago for facial cancer and is still disfigured and having trouble with lymph.  

The PT talked at length about the kinds of massage for the swelling of the edema and re-routing the lymph, and the daily outpatient  bandaging.  And the at-home "stocking."  And how some women have a swollen arm until they die many years later!  About how they are at risk for the rest of their lives for edema (in addition to being at risk for recurrence.)

There were mutterings,and exclamations from the other side of the room:  "Why don't they think of some other way than taking out lymph nodes!?"   "Why don't they do something?"

 Two experimental treatments were discussed - neither available since they are experimental, and insurance companies won't touch them. And neither will our bank accounts.

The heartbreaker was a woman dealing with this edema because the diagnostic test with purple dye had not worked, so her nodes were taken out.  They were perfectly normal!   Is there any excuse for that?
Or maybe the heartbreaker was the woman, once pretty, who still has a bandaged eye after facial cancer, and a swollen cheek many years after lymph node removal.

Two women were wearing thick "stockings"  on hand and arm in Texas humidity that hasn't reached its peak yet this year.  Those stockings shout "old woman," and probably dealing with them makes patients feel like "old women."  I have a friend who had breast surgery several years ago, and still has a "stocking" and even one for her hand.  Not the sort of thing one wears to a job interview.

How much should "survivor" women  be required to deal with?   They go on with housework, jobs, and even travel and have families and children with all the pain we face with our loved ones.  Then when the others sleep, these patients are dealing with their lymph.  They finally join their spouses in bed, where they can only sleep on one side, favoring the fat, unattractive, uncomfortable "stocking."   

 Most of the women there were grey-or white-haired.  I'm guessing the younger lymph node removal survivors were at work.  Or were they at home trying to get strained baby food off that thick, ugly arm pressure stocking?  

If this doesn't make you unhappy, maybe this ad I just saw will:

LYMPHEDEMA CERTIFICATION

The Only Five Business Day LANA® Recognized Course. Sign Up Today!

Maybe someday someone I know will trust one of those five-day wonders?

These survivors are valiant. Were all of their doctors equally valiant?  

It's not perfect, but give the patient more? You might want to read the latest

The buzz isn't just buzz now.  If you ever read the science/med sites, you might want to read the MedPage announcement that the American Society of Clinical Oncology (ASCO) says all women with hormone-receptive breast cancer should be offered ten years of Tamoxifen or aromatase inhibitors (AIs).  And don't skip the comments.  

I have some questions about this decision.  Starting with a sentence from a 2009 NCI fact sheet:

 Studies have shown that tamoxifen helps prevent the original cancer from returning and also helps to prevent the development of new cancers in the other breast; however, many women develop resistance to the drug over time (1, 2).  (italics mine) From Adjuvant and Neoadjuvant Therapy Fact Sheet.

And we still don't know how many women cannot metabolize Tamoxifen completely into endoxifen (hence the new Mayo Clinic study into the possibility of administering endoxifen directly.)   Why keep pouring Tamoxifen into those women?

I'm starting to repeat myself and an earlier May post here.   This is on my mind with each little white pill.

I wish you health.