SURVIVORS - ANOTHER STORY

Yesterday, I focused on a cancer survivor.   Well, two female cancer survivors.  

Today, more from The Immune Power Personality.  Henry Dreher met Michael Callen in 1984, when Callen had already had AIDS for three years.  Dreher described him as "energetic, robust, and upbeat," and without visible symptoms.

 Callen was giving a talk at conference on psychological factors in AIDS.  He described his fight against prognosis that AIDS patients would die quickly, calling it "'the propaganda of hopelessness.'"  And he spoke about his fight against the medical community's lack of effort to beat AIDS.

Later Callen described his life:  a good doctor, acceptance of the seriousness of his disease, and a refusal to accept a death sentence.  Dreher describes him as "motivated by love and a search for meaning in his life work and relationships."   He was inspired by Callen's ongoing exploration of  "the role of personality in recovering from illness."

Callen went on with his singing career.  And he went on with his polite but determined war against medical and lay people's ignorance and apathy regarding AIDS.  

And he challenged the gay community to give up their denial of the dangers of common sex practices.  In short, he basically created what we now refer to as "safe sex."

He traveled extensively to talk with other AIDS patients.  He  did an end run around government stalling by creating and initiating localized research funding.  

Later he continued his personal passions, spent time cooking, and even wrote a book about his and other patients' lives.  Oh, and recorded a solo album of his songs.

Service.  But without abandoning his own abilities and joys.

CANCER SURVIVORS: What do they do differently?

 This morning SUNRISE ROUNDS had a remarkable story:  Against the Odds.  It's the saga of a patient whose life has held amazing survivals and avoided recurrance of some cancers that are often deadly for others.

We know nothing of her inner life; her doctor says she "gets back up."  I don't know the answers to her amazing recoveries, though I suspect good insurance, excellent care, and enough money may have helped.

The closest I've come to learning answers for such riddles is in The Immune Power Personality (yes, here I go again with that book.)

Amazing stories are told there: one is of Alice Epstein, who recovered from an "incurable" cancer after embarking on an intense spiritual, mental, and emotional journey.

Alice was given three months to live after being diagnosed with kidney cancer that had spread to her lungs.  

Supported by her psychologist husband, she took a deep look into attitudes and feelings that had followed her through life.  Finally she told her husband she did not wish that to be "her last winter."  She determined to fight. 

Then she found a therapist who teaches Psychosynthesis, a therapy devised in Italy, that has not caught on in the US. Dreyer quotes her as saying, "Within three weeks, I knew I was changing . . . the hopelessness had turned into faith that I was going to get better."  She began recovering quickly enough to dare turning down an experimental program.

She lived to be 86, and died of stroke, not cancer.

Yes, I admit she and her husband were not poor, they could pay the therapist and the travel to hospitals, and the bills.  And her husband was a psychologist and an incredible support to her.

On the other hand, we ask athletes, and women with great skin, "What do  you do?"  We ask people who lived to be a hundred how they do it.  

Maybe we'd better pay more attention to how cancer survivors do it.

I've read Alice's book, Mind, Fantasy, and Healing.  She knows her case is rare, and feels most cancer patients will do better with combined medical and psychological treatment. 

Maybe we'd better be as concerned about cancer patients who are underserved by good psychologists as we are about their being underserved for medical treatment?

TAMOXIFEN, CANCER, THE BREAST. . . and the power of paying attention

I was serious when I told the medical oncologist that the effects of a month of Tamoxifen were a matter of degree more than any new problems.  And my life was constantly changing; even seeing another new doctor meant one more adjustment.

Now I find myself feeling so much fatigue, and weight, feeling old and walking slower.  I remember having a lot more energy during the weeks of radiation!

I got out my copy of The Immune Power Personality.  Dreyer focuses a lot on paying attention to the body and our life.  He offers a chart we can use to connect a symptom to what's going on in us and to us at the time--emotions, moods, memories, physical sensations, work, relationship, and so on.  I tried the chart long ago, and had trouble staying with it.

But based on the work of Gary E. Schwartz,  former Director of the Yale Psychophysiology Center,  Dreyer has a list of what to look for after we've done that chart for just a week.  I can use these. Here are a few sample questions: 

Do particular symptoms worsen when certain emotions are activated?

Do particular symptoms worsen when certain events take place?

Are particular emotions associated with other physical sensations?

Are certain sensations associated with particular moods?

Do your worst symptoms occur at work?  During interactions with particular individuals?


Could asking these questions be useful even for patients with more immediately dangerous cancers than DCIS?  Even for problems with chemo?  

For me, the list is right on target, and could guide me on what I report at the next oncologist visit.

AVOIDING SOY? - a food find but no solutions

My medical oncologist, as I've mentioned is  actively against anything that says "soy" for women taking Tamoxifen.  I've been reading labels obsessively, eating too many Lara bars, and sometimes feeling hungry.

Today, in the market, I picked up a little carton of split pea soup from Pacific Foods of Oregon (not a name you see in Texas so much.)  I held it up to the light at different angles - no soy on the label.  I picked up another flavor, and another - no soy on those labels either!

And the label on the split pea said the ham is uncured (I guess that's okay since they cook it before it goes in the carton?)   So it doesn't have those nitrates and things --less harmful stuff.

I brought home the "split pea and uncured ham" soup.  It would have been nice to have a pal to share with, since I couldn't get the box to re-close tightly.

That flavor is too peppery for my digestion--but I liked it.  Everybody else in Texas would probably love it. And chunks is a bit optimistic for the bits of ham.   But I liked it enough to buy another flavor soon.

Caution:  it does not say "soy free," just doesn't name soy on the label.  So if you're actually allergic, you'll need more research.  pacificfoods.com

The question is:  Do we just avoid national brands to save time hunting food?   How do women who work avoid soy for lunch?  Live on sandwiches?  Try to fill up on salad?

Be well.

I HATE PATIENT PORTALS (Yes, a rant)

When I worked for the Navy contractor, editing updates to USN technical publications, I learned a lot.  

The most important, life-changing thing I learned was:  copying something over is a great way to make a mistake.  This includes trying to type things like my ridiculously long doctor-portal address. That's why computers have a copy-paste feature!  To be copied, the address needs to be in the computer.  Since it wasn't emailed to me, it's not in there.

And the danger of typing a mistake goes double for my GI-digestive health patient portal.  Perhaps yours is like mine, with a tiny print, three-and-a-half inch long address, some caps in the user name, and an eight-digit password.  What are the chances of typing this wrong 221 times?  I am not a numbers typist.

I can't even find my digestive health portal address, etc, any more.  It took an hour to fight my way into that portal, only to find that the information I wanted had not been input.  The next time I tried it, the portal put me in a don't-loop for a half hour.  I finally gave up.  

Last week, I agreed to give my email address to my primary doctor so I could use a portal.  It's the same portal program! And they have my e-mail address.    

How to handle it?  I want them to email me the address and password, so I can just copy them into a document and then copy them on line repeatedly.  This should have been a choice in the design of the portal.  It's probably as confidential as having this paper floating around the house and accidentally getting recycled.

I can't e-mail the doctor and ask them to e-mail me back, since I don't have their e-mail address.  I would have to try to get someone there by phone.  Right now their phone is not taking messages.

I will try them again between thunderstorms this afternoon.  

Is your patient portal easier?  Am I being unreasonable? Please leave a comment.  

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?




  

TAMOXIFEN - Second month

The medical oncologist said we should take my depression seriously, but until our June appointment, I'm taking it seriously by myself.  All I do for it during this high-pollen warning is drink forbidden morning decaf, read something I enjoy, and park far away from library and stores (parking lot walking has less pollen.) And sometimes get out the earphones and listen to music on You Tube.

The fatigue may get better when the pollen lets me walk more.  It's hard to catch a nap at a time when I haven't eaten for 2 hours (due to GERD problem.)

And today I need my weight workout - which may also help with depression.  

I'll be getting blood work, hopefully including thyroid test, but not until right before the June appointment. 

Before I met this doctor, I wrote down some notes about fuzzy thinking.  I don't remember if I mentioned it to him that first day.  And I didn't mention it last week because I had so many other questions.    Yesterday, I forgot to take two important pills, but didn't think to look in my daily pills box to see if I'd taken them.  This morning, there they were.

It's hard to distinguish between regular absentmindedness and distraction versus some pill-induced fuzzy thinking.  

PATIENT SURVEYS - Useless? Poorly worded? Hard to answer?

First, I said here weeks ago that I would fill out the radiation area survey right away.  Didn't.

Second, I got two surveys for the radiation department.  Now one here on the desk.

The Type of cancer section gives me lots of other diseases to be scared about.  I fill in Breast.

Then it wants to know Date of Visit.  The guy who wrote this seems to think 1 day in the radiation center will do the job!  And somebody approved this questionnaire.

I fill in First time (for this cancer)  and Female.  They thoughtfully have 3 spaces for our age.
Then I can choose what happened on the last visit.  Follow-up is one choice, but I never had any follow-up!  Interesting.

(I did call once about whether I can have an x-ray now for another medical problem.  But I've never asked again to talk to the doctor about my breast and some pain I had for a while around the breast on the side of the boost.  I'm afraid I'll get the regular nurse, who has not helped much.)

 There's a part B for registration, and I literally don't remember registering.  I just made the appointment to MEET the doctor, but then I was rushed into way too much.  The whole day was a whirlwind.  I think I took my pathology report with me, but maybe they got it from the surgeon.  They made me put on a gown and robe, and watch a somewhat useless video!  I also had to spend too much time with a social worker.  Where to write that on this questionnaire?

Now the doctor section.  I feel like she will definitely find out that I'm the one who wrote this!  Argh. Paranoia.  I don't know how to say how I felt about her.  I wrote that I was overwhelmed, that she talked AT me, not WITH me. Rushed past my fears of side effects.    

It's hard to answer questions about the staff - two radiation therapists just saved my sanity.  Two others were not helpful or supportive.  I'm trying to find where to say that on the form.

My answers on the radiation therapy are all over the map.  I believe the doctor is good at the radiation and so are the people involved in the "control room."  But I had to say I wasn't emotionally or physically prepared.  I told about the amazing pain in my arm during the boost, and the sensory overload of people rushing in and out, uncovering me dozens of times.

I couldn't wait until I got to the part about what was best!  I always want to talk about my two wonderful radiation therapists and Dr. Kaiser.

And the last thing I wrote was that I believe the actual radiation treatment was the best possible.

Well, it's all filled out.  Even while I was complaining, I am aware that I may have been the "least sick" and the least in pain, and the least scared of anyone they saw in those months.  But if I got someone's attention, maybe I made it better for the future, patients who are really suffering.

 

HOSPITALS - Thinking too far out of the box

When a sick child is in a pediatric unit, the other kids may be sick, but the adults he sees – nurses, doctors, and Mom - are usually well. I believe this gives kids a sense of security. And a sick child has plenty of emotional and physical overload without seeing and wondering about sick adults.

This week I read a glowing report about a new hospital and its new layout that supposedly is easier for the patient and doctor: to speed things along, the treatment rooms do not separate pediatric and adult patients! Any available room will be used for any age in this combination area.   

At the moment, this is my least favorite idea that hospitals have ever agreed to.  But the logistics of it are not my concern today.

In the hospital praised in the article, kids taken to or from exam rooms will unavoidably pass adults en route to a room, or vice- versa. Some of the adults the kids see there will not be in good shape. 

And don’t pediatric areas usually have some décor that might comfort, or at least distract a kid?  All-purpose areas don’t. 

Conversely, if I’m really hurting, the arrival of a doctor with a duck on his white coat will not be reassuring. 

 As an adult, and not a young adult, my usual battle cry is: Don’t isolate me with my age group!  But surely, the exam room area in a hospital can’t be a great place for adult-child bonding.

TO HOSPITALS: STOP! Step away from the demo. Step away from the drawing board

Yesterday I read an article titled something like How to Build a Smart Hospital.  I flinched. But I peeked.  There was an awful lot about electronics. I felt my blood pressure rise.  I was sure the article was written by someone under 55 years old.  

I remembered, this morning, that night in spine rehab when the nurse could not figure out the medicine program or what to do about my one med that disappeared from the computer. I remembered registering there for surgery, sitting in pain for an hour and a half while a nurse tried to get a few sentences into the hospital registration program.

I remembered last week complaining about the new Windows, and the smart professional woman next to me telling me that she had given  up on its touch screen all together.  

And a few days ago, trying to find the main entrance to a hospital, then learning the next day that the main entrance was the one with the Maternity sign.  And never finding an information desk.  

Don't give us hospitals that are smarter than we are!  Shut down the board meeting and ASK A PATIENT whether he needs a kiosk to get admitted, when he thinks his test result will be: "six months to live."

And if you must have electronics, pick the ones that anyone can use, even the substitute nurse from the other department.  Even me, when I am scared or in pain.  

Pick things like the pager that helps us move about, including going to the bathroom, while waiting for our turn to get good news or bad. 

A patient needs a kind, calm, competent person with the needle, competent with the space age machine, with the deadly chemo.  A patient does NOT need a nurse or resident or surgeon who is still learning the new electronics this morning!   

Spend the money to get kind intelligent caregivers.  Then spend money on taking time to train them until they know the new gadgets better than they know their own faces in the mirror. Check on them until you know they know.  Until you see them work these new features.  

And don't give the patient any electronics he doesn't want and can't use. The patient already has enough to do just figuring out the "smart" call buttons with the cute, microscopic pictures on them.

Put a sign in the board room that says:  

No patient should need training to use this hospital

Send the same sign to your architect and hospital designer.  

CANCER - tiny miracles in totally unexpected places

Medpage this morning directed me to a NYTimes article about a wedding in intensive care.  No, the patient didn't get married.  She got what was perceived as probably her dying wish - to be at her daughter's wedding, which quickly changed venues to ACU.  I see this as a Must Read.

TAMOXIFEN - 30 day checkup

I had plenty of questions for the medical oncologist yesterday.  He is a kind, cordial person, and dealt with all of them without letting me get sidetracked.

Sitting in his waiting room among people who are in a lot of pain and fear is a great place to learn how fortunate I am that Tamoxifen is my only connection now to the CVIS I had.  The doctor reminded me that we all complain.  He doesn't mind when I do.

First, the soy in cough drops and in my antacid.  He said soy is everywhere; even if you drink a Coke, it has soy.  I reminded him that he'd told me:  If it says soy, run.  He said that they do that on purpose, so we'll be sure to avoid it  and be aware of it.  He reminded me that if we go to an Asian person's for dinner, we can't refuse to eat their food.  Just summed up:  don't deliberately choose a soy dish; just avoid it if you can.

I admit that month of being scared of soy certainly did make me aware of choices and labels.  But now I wish I'd eaten those chips at  the hospital luncheon/lecture the day before. 

He asked if any of my medical concerns were the result of this pill I'm taking.  I said it was probably all a matter of degree--making things seem a little worse.  

We talked about depression, and moments of severe fatigue and feeling almost faint for a minute.  In short, I said the mornings were sometimes tough.  He said we should take both of these seriously. I told him I'm drinking the forbidden decaf (forbidden for another medical condition) in the morning now because it is "the poor man's anti-depressant" and because that warm cup in the morning had been a lifetime comfort routine for me.  He said we all need some comfort routines. 

I mentioned that I hadn't been able to lose weight, and he said these preventive pills can cause water retention like some women experienced earlier in connection with their menstrual cycle.

Then I also asked about a thyroid test, which I haven't had for years.  He put me on an every-three-month checkup basis and said I had to have blood work before the next appointment.  

He couldn't think of a really good OB-Gyn except one who is booked many months ahead.

It was a completely happy, friendly appointment.  I left feeling better.  

PINK BOOTIES, BLUE BOOTIES, but no cap and gown

For years I lived and worked in Oxnard, and was included in Strawberry Festival outings and parties in honor of this giant fruit. 

Much more recently, a newspaper story about migrant children working in the fields, drew a much  different picture in my mind that will not, will never, go away.  An adult working in the strawberry fields, wearing a white, space-man safety suit like workers who approach severe radiation.  He is protecting himself from the chemicals used on the fruit. That suit doesn't come in child size.

medpage this week drew my attention to an article in the Atlantic:  The dangerous toxins that threaten our brains.  I hope I may quote some of this for educational purposes and to encourage you to read the Atlantic article.

For openers,  Dr. David Bellinger, a professor of neurology at Harvard Medical School, has compared intelligence quotients among children whose mothers had been exposed to lead, mercury, and organophosphates while pregnant to those who had not. Bellinger calculates a total loss of 16.9 million IQ points due to exposure to organophosphates, the most common pesticides used in agriculture.

There are attention-getting pictures of dangerous toxins, including some we thought we'd got rid of some time ago.  

Then a segue intro to another article some of us have heard about.  
 "Philippe Grandjean, Bellinger’s Harvard colleague, and Philip Landrigan, dean for global health at Mount Sinai School of Medicine in Manhattan, announced to some controversy in the pages of a prestigious medical journal that a “silent pandemic” of toxins has been damaging the brains of unborn children."

 That article is where some of us who once lived and worked in design in California learned belatedly about the  list of the big danger toxins, including flame retardants.

I don't want to scare your pregnant relatives into fits, but . . . those numbers about brain cells lost, endangered in the womb. . don't they make you want to call the White House?  Yell at Congress?  Shake some politician loose from his teeth?  

A point is raised:  how much exposure is too much?  We've believed for too long that there are safe limits. As Charles Kettering once said  "It ain’t what you don’t know that gets you into trouble.  It's what you know that just ain't so."

For some babies, it's too late.  The article insists: The brains you're born with are the brains you get.

A picture of a snowy white house in an old ad for lead house paint ads leads us to an urgent conclusion:   We have no rules and no good tests for new chemicals that may cause undreamed of brain damage years down the road. 

The "repair" bills in the legislature now do NOT provide those precautionary rules and tests for future chemicals.  

This is where we either use our patient voices or look the other way.  

HOSPITAL TO PATIENT COMMUNICATION . . . when it breaks down

When my father was dying, I went to visit him in the hospital.  The night I got there, he wasn't in his room. When a patient is very ill, an empty bed at night is a frightening signal to a family member.  I couldn't find anyone who knew where he had gone.  For one of the rare times in my life, I sat down on the stairs and cried.

Today I'm going to an appointment with my primary doctor.  Afterward I want to go immediately to the hospital for a patient education lunch and lecture.  I've been looking forward to it; I don't want to miss any more of it than I have to.  There's a time factor here.

But I don't know how to get to the room in the main hospital.  I've always been in another building for the surgery center and the breast center.  I emailed the coordinating nurse; she emailed back to go to the main entrance and people there would guide me.

But where is the main entrance to the main hospital?  

My daughter has lived here for ages, but never needed the main entrance.  We drove over there last night.   There was one  pretty entrance with a luxury-hotel fanlight over the door.  A sign saying Maternity pointed toward it, but when we pulled up, a man in a wheelchair was being helped out.  Is that the main entrance?  It just says Pinecroft Lobby.  

My daughter said, tomorrow, the little shuttle will pick you up.  (I've seen the shuttle, and speed is not their thing.)  We went home.   

What we have here is a failure to communicate.

When we work somewhere, we know where the main entrance is. Or what we call the main entrance. On a store, it's evident.   What we call the back door may be on the side, but we still call it the back door when we talk to new customers or clients.  

In the past, there was no mistaking the main entrance to a hospital. Architecture made it obvious.  Now, we depend on signs for departments we don't need, signs that keep us from watching our driving among frantic, frightened people.  The sign I need would say Main Entrance.

We as patients have become inured to wandering around in hospitals hoping to find someone who can tell us where to find the waiting room for the colonoscopy or where to find Dad's room.  The red line on the floor leads to what is now an empty department. Yet hospitals are paying a fortune for signage.  Or is our insurance paying for it?  

Yes, today is just a lunch and a lecture.  No big deal.  But for the patient in the car behind me, how to get in may be a very big deal.

Am I wrong to think that telling the patient very clearly how to get where he needs to be is a sign of caring?    

On the other hand, how does the hospital know we're not happy if we don't say so?  This is what my patient voice is for.  

TAMOXIFEN - Life Without Soy - is Starbucks stepping up to the plate?

Monday:
Starbucks has sent me another no-fault reply.  They advised me not to eat anything there that didn't offer the product/nutrition information I need.

Formatting concerns kept me from posting that exact boilerplate reply.

After meeting with my tutoring client, I went to HEB market.  I asked one of the seafood counter persons about my favorite crab cake's contents.  He told me that the crab mix comes with a flour binder from Japan.  So I have no way of knowing if their binder contains soy.  (I've read in one of the soy-free product websites that some flour does have soy.)  The counter man waved his hand over all their crab cakes and advised me not to eat them.  I politely thanked him and went home a little grumpy.  But of course, I haven't given up on our market.

Tuesday:
Then last night I discovered that someone at Starbucks has taken my not particularly loving and patient suggestions. (Actually I had sort of threatened by email to call Panera about possible soy-free offerings.)

She wrote that she advised the "appropriate" teams, or words to that effect, about the request for something soy free.  We'll see what happens.  I suspect it will take a long time for this request to go through corporate board meetings and then slowly filter down to the guy who buys the flour, then slowly wind its way thru the test kitchens to the communications department so the web designer can slowly change all the printed info about what's in the food.  Or do they outsource all their baking?  I've never peaked into the kitchen.

Oh, did I forget to mention the endless palaver with corporate legal, who will be so sure I'll get sick and sue them even if the new product has no soy?

I have not given up Starbucks.  Many of us sit there with homework and some decaf.  I try to leave a good enough tip to make up for it.

Even if Starbucks finds that they already have something that can be labeled Soy Free, the whole process will probably take just as long before they assure me that I can safely eat the Banana/pumpkin Fluffy Scone or whatever.

This is what using my patient voice is for.  And don't you think it takes more time than it should?  I still don't have any figures on how many women take Tamoxifen.  But you can bet many, perhaps more than half of us, had been having a snack at Starbucks.  Until we took that first pill.

Your comments on what you do with your patient voice are always welcome here.

Be well.

PUT YOUR LEFT FOOT IN, PUT YOUR RIGHT FOOT IN - OR ELSE

There is probably dust on my three-pound weights.  But I did walk quite a bit over the weekend despite some foot issues.  

But back to those weights.  The side benefit of weights is that it's hard to eat while you're using them.    

Rebecca Siegel, director of surveillance information for the American Cancer Society, was featured in a Modern Healthcare article today.  She's delighted with the decrease in colon cancer over the last decade.  She's troubled by the underserved populations who haven't had colonoscopies.  

She reminded us about the prevention of staying at normal weight and exercising.   

This of course reminded me of Sunrise Rounds and Dr. Salwitz's chilling title:  Breast Cancer Patients Rest in Peace.   He gave me statistics on exercise time that would keep breast cancer from recurring.  He did get me walking more.  But probably not enough.

Somewhere yesterday I read that most of us walk a lot more than we realize.  (The person who wrote that may not have studied  commuter times very seriously.)  But it was encouraging that we may not need 10,000 more steps.  Maybe only a half hour more five or so times a week.  So. . .  

Why don't we walk?  Athletic shoes in a myriad of colors are popular.  I've had time to study them on people who are sitting down.  Busy people in a meeting.  

In my mystery stories, which I can't read while I'm walking, the hero and heroine run before breakfast every day.  Of course, they are police detectives, so they're safer than some of us when they run wherever they please.

Now, in spite of enough pollen to foliate a new continent, I do have the luxury of walking as much as my feet will put up with.

And my California doctor dealt with the time excuse by telling me to walk faster and get those cardiac bonuses.  

When I lived in the hills, I had a whole litany of ways I talked myself slowly into climbing the nearby hill:  I'd tell myself if I only just laced up my shoes and got my sunglasses, I still didn't have to go.  But for me, it only took one step up before I climbed the whole hill, and proud of it!  

And if I'm careful, I can read while doing the ankle weight moves!  

As I mention in my book ms., an old boyfriend taught me never to sit down when I come home unless it's in front of my project.  
So I guess I'll have to pick up that businesslike three pound weight when I come home and take off my jacket, and see where it leads.  Maybe to more energy?  Maybe to more years without recurrence?  

The knee-bone's connected . . . (Or, I am a whole person.)

I have a whole digestive tract.  So far.  Because I am a whole person.

Although I believe I filled out the lengthy questionnaire in the GI doctor's waiting room, maybe I should ask for a copy.  I'm sure I checked Upper respiratory issues.  I have always had them--they run in the family.

At every appointment, when she asked without looking at me: How's your swallowing? I told her that my swallowing was complicated by large amounts of sinus drainage in my throat.

When the GERD medicine was definitely not working, and I was very uncomfortable, I did not ask the magic question:  What else could this be?  She told me I could try an OTC strength of my medicine or even Zantac (without cautioning me on the side effects, which were scary.)

Today a friend with the same stomach symptoms as mine told me she gets them when milk enters her system.  I already knew that ice cream always gave me a slight runny nose.

No, that friend's not a doctor, nor am I.  I looked on a famous hospital website that said:  try eliminating dairy from your diet for a week.  So I ate the last of the chicken salad and bought a bunch of coconut yogurt and almond yogurt, and a bottle of almond milk.

Why didn't the doctor ask about this when I told her about the sinus drainage?  (We've known for decades that singers should not drink milk, because of the effect on the throat.) 

If milk can affect my stomach, too, isn't milk a GI problem?  (Of course, there are nose and throat specialists, too.)

Instead, I think the answer to such questions  is often a primary doctor who knows a lot, or will communicate with other doctors.  You know, a sort of Whole Person Specialist.

TAMOXIFEN - THE FIRST MONTH - Twigs, berries, and crazy pills

Woke up hungry again. Yet I seem to be gaining more weight.  Have to remind the doctor that I was tapering off soy weeks before I started Tamoxifen, and that difference in my daily food seems huge - the third total change in diet in just over two years.  I need to consider that microwaving boxed soup may save me. 

Once I wake up hungry, it's eat or accept that I may not get back to sleep.  Then, if I eat, because of GERD, I'm not supposed to lie down again, but of course I do.  

And the sinuses aren't great.  Soy milk, of course, isn't "milk" so didn't aggravate allergies.  

There really is soy in the cough drops!  And in the antacid.

Almost all my discomforts are a matter of degree.  I've waked up hungry in the past.  But this much weight is unusual.

If there's a bottom line, it's depression. A circular reaction to all these changes.  And yet I had small inklings of it weeks or months ago.  Maybe even before the bad news at the repeat mammograms?  One more thing to ask the medical oncologist Thursday.

Yes, I'm grateful I only had "baby cancer" or "non cancer" or whatever they call it this month.  Yes, I'm grateful that this medicine is a chance to stay well.  But as that wonderful counselor said long ago:  Yes, it could be worse.  But it could be better. 

Driving Miss Daisy was only a movie

On Monday, I met a charming young woman who has just moved here from Spain.  She had quickly dared the drive to Houston, and we talked about other places she would like to go.  This led to topics like bullet trains and underwater subway lines. (Not my favorite mental image.)

Then she said:  It seems as if everything is being done for the rich.  In her country as well as here, local train stops are deserted, and people must be able to drive some distance to where the new train line stops.  Sounds like the US.

 Last week, as I mentioned, I learned that a highly recommended doctor does not take Medicare.  And that my surgeon can't even think of a primary doctor who does.

I moved here from L.A. area, where medical transportation is a joke. My customary hospital had free transit for outpatients who live in the valley.  When I moved to the valley, and developed a spine problem, medical transport was useless. If the driver showed up in the guaranteed half hour window, and if he waited three minutes for us to get to the curb with a walker, we could go to our doctor in Burbank.  But the vouchers we'd bought did not work in Burbank to get us back.

Now I live in a huge area of TX that has virtually no public transportation.  A basic taxi ride is $25.

Why do you care?  

If, at the end of this month, Medicare doctors get a 25% pay cut, who will treat Medicare patients?  (Who will still be paying for Medicare out of their social security.)  Medicare is paying for doctor training, but may not be paying any doctors enough to live on.

Your parents and all the Miss Daisies may need to go great distances to get care. Especially care that you trust.

 If there is no public transportation to that care, and they are too sick to drive, will you take them??

If you're at work, who you gonna call?

Have you called your government about this?  

DCIS - Who gets too much treatment?

 

 Redefining cancer to reduce unnecessary treatment

By Modern Healthcare 

Posted: March 8, 2014 

Modern Healthcare’s article this morning had an excerpt of an interview with Dr. Otis Bradley, CMO of the American Cancer Society.  I’m trying to pinpoint what's new there.   

  His definition, “Cancer is uncontrolled cell growth” leads to  “we believe that 10 % to 30% of all of our localized {breast} cancers are overdiagnosed cancers. These are women who will be treated needlessly.”  He discusses genetics of cells--which ones are likely to grow and kill, which not.  You may have seen some of those ideas on medpage “hot topics” video.

Like some other women after diagnosis, I looked on the web and  even bought the Mayo Clinic Cancer Book.  But I had to stop and realize that much information may not have been found by some patients, and may be rejected by many doctors.  

I was given a copy of my DCIS needle biopsy pathology report, and I read it carefully, because I wanted to be one of the women who may simply go home, watch, and wait.  I didn’t want to think about radiation.  

But when I saw the “levels” on the report,  where my tumor fell on those levels, and that mine was hormone dependent, I was sure radiation would be recommended along with other treatments.  In other words, I was not in Dr. Brawley’s ten percent of needlessly treated.  But what about other women?  

Are other doctors and other areas using less specific or accurate biopsy?  Or what?  Are other doctors using surgery and radiation for even the lowest levels of tiny tumors? 

Are women demanding more treatment for the lowest levels of tumors?  One thing I do know:  fear is an incredible motivator.  Get it out of me!  Kill it!  That all goes through our minds sometimes.

What doctor refuses demands like that?

Much of Dr. Brawley's information has been available for some of us, at least for women who had access to research on the Internet, knew where to look, who even bought the Mayo Clinic Cancer Book.  I remember trying a Sloan Kettering interactive questionnaire on my level and type of tumor, and the statistics were convincing.    But I have to stop and realize some findings may be rejected by doctors.

And, who really advises women to look up a famous hospital on line and take its interactive questionnaire?   Would all women do that?  Cancer strikes women who can’t even read English.  All they have is memories of breast cancer funerals, and doctors who will take them as patients. 

  

POSTCARDS FROM TAXMOXIFEN part 2

Daylight saving time started Sunday.  In the past I always looked forward to the longer daylight; it seemed to make me feel better.  Now I don't get that effect yet.  And I already had a cup of forbidden decaf.

Between the GERD diet and the No Soy diet, how could I have gained this weight?  And still two mornings, I woke up hungry, long before I'd had enough sleep.  Am I just less active? Sitting here learning the new laptop's personality doesn't burn many calories. But I can't help blaming Tamoxifen

There is more hair in my brush than I can ever remember.  It's funny how a side effect that says "older, older" gets your attention more than anything else.  On the hair, I'm definitely going to blame Tamoxifen.

And then I realize, it's not like taking too many vitamins--you don't just stop Tamoxifen.  

Will things level out at the end of these first 30 pills?  I'm seeing the medical oncologist a week from Thursday.

LOOKING THE OTHER WAY - When you have cancer, who you gonna call?

Last week, a friend recommended a doctor she really likes.  When I called his office, I was told he does not accept Medicare.  In fact, he isn't taking any new patients.  Then I read the news and got really scared.

Before cancer research got so much Internet publicity, I read a quote from a doctor who was asked how to keep from getting cancer,  He replied, "Don't get old."

Still, some of us did get old.  And we're still doing it.

At the end of this month, if something isn't done, even more of us who are old enough for Medicare will be searching for a doctor, any doctor who will take Medicare.  Some of us will not be able to travel the distance to the nearest doctor who still does accept it.

Primary doctors are already paid very little due to fee schedules that have been patched more than an old tire. Some eager officials want no more patches.  They want to scrap the whole doctor payment schedule and start over. That may take years.

Without a patch, it is my understanding that doctors will get 25%  less for treating us.  That's 25% less!  As a result, still more doctors will be unable to afford accepting Medicare patients.

The government is starving Medicare.  But we still pay for it out of our Social Security as we have since we were starting to work.  We still pay into SS on payday if we work!  We then pay for a supplement if we have enough Social Security or a job.

But if doctors can't take us, the government will still take our money.  

Threatening to vote for a different party may not help.  The projected budget already shows unbelievable cuts to Medicare.

And many younger people, who do have relatives on Social Security, have no idea this may happen or is already happening. These young and middle aged people may be on Social Security someday themselves.  And their parents will get sick sometimes.   Will there be a doctor?  Who will pay that doctor?

Have you contacted anyone in government about this?  I have.

OUR PATIENT VOICE . . . what's it for?

We want a voice in our medical care.  We want a voice in our insurance.  We want a voice in out government.

Voting is a voice, and demands responsibility.  If the email response on the White House web site doesn't get results, maybe our responsibility is going where there's a news camera.

So a patient's voice gives us power as well as responsibility  It can be used outside the examining room,.

It can be used in the hospital when we fill out the questionnaire and say the waiting room for outpatients is a scandal.

I used mine yesterday when I said to the cashier that I wish CVS would put in a soy-free department.  But I used it to the wrong person.  She didn't seem to be planning to tell the manager.  And I don't know if the manager would plan to tell corporate.  And since even the store layout seems to be homogenized by corporate, that's where the change will come, if there is one.

How many women in the US are taking Tamoxifen?  I don't know if they're all giving up soy because of hormone-nourished tumors - past or present.

This blog is the main place where I use my patient's voice.  Perhaps it's my responsibility to find out how to contact a drug store's corporate office.  Perhaps I can contact Breast Cancer Action, SF, and ask if they have and figures on women who are taking Tamoxifen.  What are the chances my insurance company would tell me?  Ha.

I can ask the medical oncologist if he has any figures.  I can ask why flax seed isn't banned for us to use, since it's supposedly chock full of phytoestrogens - more than soy?

I can use my voice.

POSTCARDS FROM TAMOXIFEN

One side says Vitamin D is a new blessing for breast cancer and will make me avoid recurrence; the others mention a study from another country when a D supplement didn't help anybody?  So I need some real food that has D in it.

It's hard to find on the web the names of actual food that has Vitamin D.  I finally found eggs, and green leafy vegetables. (I haven't heard that term since college.)  Luckily, we had spinach spinopika or however you spell it.  Spanakopita. Try to spell that word without looking on the wrapper if you need a laugh as much as I do today.  

Did I mention Lara bars are the only thing I can find that actually says SOY FREE?  Do not ask how many I ate today.

More important, those little ice cream cups I'm not supposed to eat don't have soy.  Tough decision.  Especially with my slight sensitivity to milk.  My point?  We all had a physical condition to start with, before DCIS appeared.

Note to self:  ask radiation doctor how long I have to stay out of the sun because of radiation So far I haven't seen a big enough sun hat that doesn't look too silly.  I need to call her about some little aches and skin problems.

No use asking the medical oncologist  or the ophthalmologist how many women on Tamoxifen really did get cataract?  I already had one lens replacement, and there is still a small cataract in the other eye.  So I already stay out of the sun as much as possible.  

Despite my solemn vow, this web searching for medical news leaves me drinking too little water, which messes up my GI system.

I suspect the only one of my complaints that's really from Tamoxifen is the flat feeling that could be depression.  (No, not the mood swings. Those are from so many birthdays.)  The medical oncologist said if I had trouble with Tamoxifen, it would be in the first month.  So I'm halfway through that.  Seeing him a week from Thursday.

Don't know the all the words to that country song, Life's too Easy to Be So Damn Hard.

CANCER AND ONE WOMAN'S FEELINGS

Yahoo this morning led me to a site called TAKE PART

In an article December 7, journalist Andri Antoniades highlighted the French group, Mini Foundation that gives cancer patients many resource people to help them feel better and take care of themselves

This article has a video of an eyes-closed "surprise" makeover that gave some participants a good laugh or at least an unforgettable surprise.

What really rang true for me, and perhaps even for every woman after diagnosis, even those  who are “cured” but experiencing adjuvant drug side effects, is this quote from a patient that inspired the makeover project:

 Describing  life before and after diagnosis: "You know what I miss most?" she said. "Being carefree."  

http://www.takepart.com/article/2013/12/06/cancer-patients-mimi-foundation-laughably-bad-makeovers

A SLEEPING GIANT OF CARE DELIVERYwakes again after 100 years

Midnight in South Chicago.  1896. A maternity hospital flying squad rolls through the streets to a tenement where a woman screams in a difficult labor.  The team delivers the child on the kitchen table, protected by the germicide in newsprint ink. When all is well, they roll on the next call.

I read this unforgettable story in high school near the greater Chicago area.  The only rolling healthcare delivery anywhere near us was a local undertaker's funeral car.  Babies were delivered in the hospital or by the neighbor. 

I've searched repeatedly since then, including in the  hero's own book, for proof that I didn't dream it.  Nurses I meet have heard of the germicide in newsprint, but none have heard of the Lying-In flying squad

Then last night, I found some proof. 

"In the USA, as far back as the last decade of the 19th century, Joseph de Lee . . . in his Chicago Maternity Centre was taking competent obstetric help,not only to his 'booked' cases, but to anyone who called

for help. His work was carried on by Beatrice Tucker{}  in a foundation whose finances were so slender during the depression years that the most urgent call had to be answered by a team travelling to the patient in a street car."

        

From a paper read at the South African Obstetrical and Gynaecological Congress, Durban, July 1956.

A recent Modern Healthcare headline:

U.S. lags behind in healthcare innovation, Sebelius says

had led me to medpage's Feb. 21 stroke flying squad innovation article by Todd Neale: 

 Taking Stroke TX On The Road, referring to Memorial Hermann's new mobile stroke unit soon to roll in Houston, with its founder on board.

Neale wrote:  "The idea of mobile medical imaging isn't new. In fact, Marie Curie equipped ambulances with x-ray equipment and drove them to the front lines during World War I."  

(So that was about a hundred years ago this year!  Since a woman did it, it couldn't be worth emulating? Or maybe nobody in the US heard about this?)  
   

"But the concept of a mobile stroke unit was introduced more recently in Germany -- about a decade ago by Klaus Fassbender, MD. . . caught the eye of stroke neurologists like Grotta." wrote Neale.  Okay, a decade ago.   And in another country. 

That's still a long time since Madame Curie's rolling imaging center and longer since deLee's flying squad.  

I salute Dr. Grotta's triumph in getting everyone on board, so to speak, for this breakthrough in care delivery. In fact, he was so committed he quit his job to be able to roll with the new center.  

Why did it take a hundred more years for the US to produce such an innovator, such a leader?  In a country so automobile mad, so technology mad, and with so many under-served, Dr. deLee's and Madame Curie's innovations should have inspired many more...
while we were thinking about what?


Apologies for the formatting - this program is uncontrollable today.