CANCER Are we really making progress?

Today Dr. Miranda Fielding told a wonderful story of a courageous patient on KevinMD.com

I encourage you to read it.  At the risk of plagiarizing myself, this was approximately my comment:

I salute the woman in the story, her doctor, and other brilliant oncologists. For me, the key phrase is "the cost of that survival."   And Dr. Fielding is courageous enough to use the phrase "radiation induced."

On this one patient, radiation has been used for about forty years.  

Trying to concentrate on the story, I kept thinking: Where is the research?  Where is the research? 

 We can make a six-speed automobile; we can equip it so it avoids hitting the car in front of it. Have we spent more money on automotive research than on  cancer cures? Do we spend more money on automotive research than on cancer prevention? Who pays for the research?  Who's in charge?

 What do we care about?   

The Sign I Want to Tear Down

I just read an article by Vineet Arora, MD, (The Broken Window.. .) on Kevin, MD.  One paragraph reminded me of something I always intended to blog about, or give a public demonstration (noisy) about:

The signs on memorial medical buildings  ( and some other medical buildings) that strike gloom in my heart.  Signs, often carved in stone, like:

SAM FLEMING MEMORIAL CANCER CENTER

In all seriousness, with apologies where needed, isn't the message: Sam went to these doctors, and he died.  Why do I want to go here? 
It might as well say:  Abandon Most Hope, Ye Who Enter Here

In other life circumstances, we don't usually see buildings that say in stone:

Smith and Witherspoon, Bankruptcy

 

Maxwell, and Earhardt, Divorce since 1889

 





Most of us grew up in an age when cancer was likely to be a death guarantee.   There is a place where a beloved doctor of mine had an office for awhile.  I was not going to him for cancer, but I hated that Cancer Center sign.

If you were giving massive sums for a new medical building, what would you call it?  What about:

 

Meredith Smith Vital Health Building

Regina Maxwell Healing Building



What do you think?  Please let me know.
 







Protecting Babies' Eyes!

I have a cataract I try diligently to protect from getting larger.  One has already been removed.  Each day as I walk with my UV protected glasses under heavy dark sunglasses, I see mothers wearing sunglasses pushing fair-skinned babies who are in the sun with no hat and no sunglasses.  The shade top on the carriage or stroller, if there is a top, is rarely used.  I long to give the moms a lecture, a scolding, or something. 

When I had babies, we didn't know about the sunglasses, and often babies were in the sun.  Sun hats were rare. Sun worship was in.  Then I grew up and learned about cataracts. My daughter grew up and found the sunglasses for her baby.

Today I searched this topic on the web.  The first doctors'  articles mentioned babies born with vision problems, also lots of cures.  NO mention of protection from the sun.  There were plenty of ads for baby sunglasses.

Before I gave up, I found this:

December 18, 2012     Protecting Your Baby’s Eyes From the Sun

 on a site called The Charlene Chronicles. 

 

I urge you to see this blog and read this article, no matter what your age.   It even mentions a feature in baby sunglasses that I have on my ultra-coverage ones.

 

CRUEL SHOES

Woman who have never met before are approaching each other in parking lots, talking urgently, and exchanging phone numbers and e-mail addresses. No, this is not espionage. They are not swapping names of Botox docs in exotic countries. It is part of a frantic search for shoes! Shoes that actually fit and shoes that might be kind to feet already damaged by shoes that didn’t fit.

One of my best friends reported a month ago that she had walked into and out of some of her formerly favorite stores thinking: Where are my shoes? Those of us with atypical feet have been wearing the wrong shoes for years and now have a set of damaged little toes and damaged big toes.

I've worn the dumb shoes, partly due to budget concerns, partly because I couldn't find any that fit, and I have the damage to prove it. I can’t have pedicures now, partly because of fear of more damage, and partly because a pedicure won't glamourize what’s left.

Face it, many working women cannot afford over $200 for the shoes designed by a podiatrist. And, remember, one shouldn’t wear the same shoes every day, so we’re talking maybe $500 for TWO pairs right off the bat.

Barefoot at my particular job is pushing it.  Well, actually, it's out of the question . . .so what do I do? What do YOU do?

GLUTEN FREE SHOPPING LIST

1. Bathroom scale (how the devil did I gain weight without toast, pasta, or maple nut scones?)

2. Pretty, comfy shoes

3. Margarita mix

4. Acne soap (how the devil did I get zits at my age without pizza, toast, or maple nut scones?

5. Bananas and almond butter; yogurt and cocoa powder

6. A blender I can clean in thirty seconds without using a laser

7. Prettier underwear

8. A bigger fridge for all those fruits and vegetables and fruits and vegetables

9. Interesting make-up to try on while I’m nibbling weird rice crackers

10. A drive-up coffee shop so I don’t see all those scones

FIVE URGENT DIET FACTS plus one

This is what I have learned so far, over and over and over:

1. Some substances being sold to pour on your cereal or in your coffee can disgust you so much that you rush to a coffee shop and put three sugars and two creams in your coffee.

2. Absolutely put down the spoon between bites even if you are reading the exciting part of the mystery novel.

3. Chewing each bite 26 times prepares food for your stomach and can make you late for work.

4. After a certain age, losing a lot of weight can make your skin hang like a monk’s bathrobe.

5. After you reach a weight your doctor likes, you still MUST view your rear when trying on pants.

6. It is not nice to punish your kids by making them drink the stuff mentioned in #1.

LAST MINUTE GIFTS: PART TWO

One more thing:
Parties or no parties, maybe give yourself a gift--eliminate one thing that might be causing that upset stomach you've been trying to ignore.   One thing like sugar, or Jeroboam size coffee, or refusing to exercise, or maybe excess arguing with the boss or whoever. 

If that doesn't work, what if you gave yourself a talk with your doctor, or gave yourself a new doctor who listens?
Happy next few years!

A new way to raise $ against cancer?

Suppose, instead of making me buy something first, a major retailer or wholesaler just went ahead and donated money to cancer research?  You know, no strings attached!  Think how impressed I would be!  How eager I would be to be their customer!  

What do you think?

BREAST CANCER PREVENTION every month. . .

  I'm still fighting the fight to insist we NEVER give money and we never run or walk for any group that:

1. Will not divulge how much money actually goes to research (prizes are not research.)

2. Won't promise to refuse money to any company that uses harmful ingredients in their products.

Please see Google Breast Cancer Action and their Think Before You Pink web page.  This group is not financed by manufacturers.

OCTOBER AND BREAST CANCER PREVENTION

This is my October 1 blog for breast cancer education and prevention.  I'm still fighting the fight to insist we NEVER give money or running or walking to any group that:
1.  Will not divulge how much money actually goes to research (prizes are not research.)
2.  Cannot guarantee that no money from their event will ever go to a company that uses harmful ingredients in their products.

Today I did my part by asking some questions about the Army of Women and by contacting my US Representative to ask him to co-sponsor the Harmful Substances Bill.

What are you willing to do to prevent breast cancer in your area?

SCARY MAMMOGRAM PHONE CALL -- MORE

I finally tracked down a woman from patient relations at St. Joseph Med. Ctr., Burbank. It took a lot of detective work, since I found no phone number on the web site. Twice now I accidentally wrote customer relations. Actually, that’s perfectly reasonable since a friend taught me that in medical matters, I am the customer. Just look at the bills for my insurance.

The call turned out to be wonderfully validating and comforting. The woman listened better than I usually do. She admitted (how refreshing) that the scary call and the rest should not have happened. At the end, she assured me that she would pass the entire scenario to the head of the mammography center. When I told her I had blogged about this, she asked to read HENBACKTALK.

I reminded her that I want to reward the tech I met at the return visit. That person explained about older women’s breast tissue and why more films were needed. She would be a great person to train whoever calls women for follow up.

This was a big step for me. I am not good on the phone when it’s something personal, or something medical. I forget part of what I need to say.

Days later: a woman from the mammography unit did call me. She said she had taken action with the person who does telephone callbacks and with the radiologist. She reminded me that they also send a letter to my primary physician. She said patients could ask to talk to another person during the initial phone call. I assured her that on hearing the words “they found” a patient can basically go into shock and forget to talk to more people.

We did not enjoy each other’s tones of voice on this call. I felt that I was hearing justification. Finally she did assure me that no one would receive any more calls like I one that scared me, and she ended the call.

If you can possibly find it, I recommend How to Cope with Your Doctor. Bernard Virshup, M.D., Praxis Press.

Please tell us your experience or adventure complaining about anything medical.

Mammograms - and two words nobody wants to hear

AN OPEN LETTER TO DOCTORS, HOSPITALS, AND MEDICAL ASSOCIATIONS:

There are two words no woman wants to hear after a mammogram: They found . . .Yet I got a call with those two words three days after my mammogram. Not from my doctor or a radiologist, but from a hesitant stranger. Something about finding a density. And a letter telling me to consult my own doctor. I was too stunned to ask his nurse the right question.

Back to the hospital after a frightened weekend. Long intake, waiting. It was not until I was in the filming room with the terribly young tech that I found out all breast tissue is of two kinds. And she seemed to be saying that one kind is more dense! In fact, nothing bad had been found! Older breasts, it seems, get folded or otherwise make it hard to see all their tissue. Why in the world didn't they train the woman who phoned to tell me they just didn't have enough pictures to see the whole breast!!! That whole weekend would have been much less painful.

More pictures and the happy tech took me far down the hall and shut me alone in a cold room without my bra and with a rack of bright pamphlets telling me how to live with cancer. I decided they put me so far away so no one would hear my reaction to their findings. I occupied myself with trying to support my breasts. Finally, the tech brought in the female radiologist, who told me her name. Without smiling, she told me again about older women's breast tissues. Finally, finally, she told me my breasts were fine, gave me a strange little smile, and walked out.

Why could the breast center not hand every woman or put on the order for mammograms the information about older breasts?

Shouldn't a breast center, staffed by women, want to avoid unnecessary fear? For those of us who have had a major biopsy under general anesthesia, for those who watched our friends die of breast cancer, any extra fear is too much fear.

FUN WITH MAMMOGRAMS (OR NOT)

Mammogram day! No more procrastinating. I'm a dreader, so even if last year's screening was okay, I still put this off. When I actually get there, I'm cheerful. I ask for a feedback form at sign-in.

So what do you do when your mammogram is really painful or the tech could use an hour in the time-out chair? We can't call for the manager, and we're too nice to give her a little Gibbs-slap. We're afraid to stop the exam in case the insurance company won't give us another, so we suffer through it. Please tell your doctor! And there may be a patient relations office you can call or write to. I had great luck writing to patient relations in my hospital about a different problem

Actually, today's tech, Paula, was great and I wasn't really uncomfortable. I praised her on the feedback form. Do you ever praise hospital people for a good experience? Let me know.