BREAST CANCER - Two sad little "cure" initals

Yes, I know there are a lot of sad letters in a breast cancer patient's world.  A lot of sad initials like HER2, scary enough to get the pharma world spewing out a fountain of new drugs.  Good new drugs that would seem like the solution.  And of course, it's not the end of the story.

That recent luncheon talk by the oncological pharmacist was not all about cure.  A lot of it was about treatment for side effects--about anti-nausea medicine, for instance.  Give your husband or your doctor, or a pharmaceutical scientist a few months of nausea at the very mention of food, and even for no visible reason.  See if he would feel cured. 

Doing more research for this blog, I blundered into several websites that were actually support chat rooms for women with BC.  I kept seeing an acronym I'd never seen before.  Is this some new kind of cancer?  Some rare kind?  "SE."  "SE."

Finally, I get it.  They weren't talking about cancer.  They were talking about "cures" and adjuvant and preventive medicine.  And the acronym I had been lucky enough to avoid until Tamoxifen, was:

SE and SEs.  The women were comparing and comforting each other about side effects.  Not very long ago, I read a blog by a woman doctor with terminal cancer who said what is often not said - the treatment is what causes the pain and misery.  

And so we get this inadequate acronym for what some of us never heard of before in our lives.  Two initials to speed talking with each other and any doctor who will listen, about fear and pain, nausea and depression, and sleeplessness--about Side Effects from a cure.  

WHAT SHOULD A DRUGSTORE SELL?

Until I was about four years old, I lived in great place - a tiny neighborhood on a dead-end street, not far from Perry's Drug Store. My wonderful baby sitter, Mrs. Doshan, would put on her white shoes and walk over there holding my hand.   

There was a soda fountain, of course.  Any self-respecting drug emporium had one.  They probably had an actual pharmacy, and a pharmacist, and some Carter's Little Liver Pills and Coconut Oil Shampoo.  But, I had my priorities.

Ice cream was considered a healthy food then, since it contained actual milk and cream and ingredients you could pronounce.   

Eventually, I grew up.  There was no streetcar when I got back to northern Indiana, so the nearest drugstore had free delivery for prescriptions.   

Then I moved across the country, and got medical problems.  

There is a drug store here we can drive to.  There is no soda fountain.  I bought a soft "hoodie" sweatshirt there. And Christmas wrapping 75% off.  

Oh, and I get my prescriptions filled there.  They have one tiny box of soy-free snack bars.   One of my prescriptions is Tamoxifen.  Soy is not allowed. Some days I'd do just about anything for a cookie with no soy.  I'm also avoiding dairy.   

Everyone who works there is professional and very nice, but I'm not ready to have a stranger give me a shot.

So a day goes like this:  Get my prescriptions, and a pair of socks at CVS.  They are still out of the padding I need for my foot.

Then drive all the way back past my neighborhood to a market. There I can get one kind of soy free nutrition bar,  some almond milk for my decaf, and a couple of almond yoghurts (soy free.)  The non-dairy "ice cream" contains soy, blast it!  A larger store in this chain sells a soy free pancake mix.  Gee.  

Have I missed some counter or refrigerator at my drug store?

The drugstore doesn't sell the Xylitol gum that the dentist gives samples of, but there is some Xylitol in the Trident.  

During a fire season once in LA, my doctor wanted me to wear a cotton hospital mask on my walks through my neighborhood.   The drug store there was out of the masks, and never got any more.  

 If you can operate a computer pretty well, are patient with pushing buttons, open an account, and provide your health profile, you can order on line and get home delivery from CVS.  It's probably easier than making an airline reservation.

In this area, WalMart and HEB will deliver prescriptions. HEB doesn't charge if it's two or more prescriptions.  Apparently you need to live in Dallas/Fort Worth to get Walgreen's same day delivery.   

But isn't part of the prescription deal that we're supposed to know and trust our pharmacist?  Like when the directions for the medicine are a bit fuzzy?  Or the pills are a different color than last month?  Like on Sunday when your doctor isn't the one on call and you have a question?  Like when you need them to check the insurance again right away?

What's wrong with this picture?  

What should we demand from a drug store?  How do we do that?




  

LUMPECTOMY THE SEQUEL - A RANT AND . . .Radiation Day 14

I managed to get a post to publish in Times font, after ages of trying.  Blogspot then cheerfully eradicated two days' posts.  I am frustrated with this. Hopefully someone read them this morning before that happened. 

Today is radiation day 14.  

Yesterday I bought two "un-bras" in case of unpleasant skin "sunburn" as we get closer to "the boost."  

To review, I scrolled back to the day I met Dr. Sands, the radiation oncologist.  She said the plan is three weeks and one day, followed by four days focusing radiation directly on the known trouble area.  She doesn't call the four days The Boost, but everyone else seems to. 

Radiation brain fog is just attributed to sleepiness, but I didn't feel sleepy when I drove to the cancer center a day early for today's treatment.  They are closed on Sunday.

Can't resist looking ahead and researching Tamoxifen versus the aromatase blockers.  One patient has told me that several women she knows have had to switch back to Tamoxifen to avoid bad side effects.  

The printed information reprinted from medical journals is frequently confusing me.  Or maybe confusing everyone?  

In a couple of weeks I will try to meet the medical oncologist (in this case, the pill doctor).  Then at the end of the month, another appointment with my surgeon.