THE VARSITY

I came to my oncology doctor by accident--a scribbled list from the surgeon. At my first appointment, another patient sat down beside me, looked at my papers, and exclaimed:  You got the GOOD doctor.  She was right.

He started to tell me all the possible medicines for my DCIS.  I admit I interruped to say I was interested in Tamoxifen (after a lot of reading and a friend's bad time with the regular regime.) 

We got along (he used a real stethoscope).   Away I went with my prescription.

Things were fine.  Or at first they seemed fine.  I sometimes felt confused or forgot something.  I missed several visits to the physical therapist (I had moved here after spine surgery.) I didn't always know what to do next.  Programs I had used at work seemed harder.

I was afraid to tell anyone, because at my age, they might drag me off to one of the "dementia doctors" who were all over the place.

At my next appointment (which I managed to get to on the right day)  I told him my troubles.  He picked up a pen and cut my prescription in half.  Told me it used to be the standard amount.  Then they doubled it. 
"Nobody complained."

I assured him they never complained because they couldn't even find his office on the bigger dose.  He laughed. 

He feels like a friend, and for me, that counts.  Counts BiG.

AFTER TAMOXIFEN quickie

Saw my oncologist this week.  We didn't talk about cancer med, but about the cane, the knee,my response to falling at my age... (more about that later).

And of course appointments like the old favorite mammogram His order as usual says with ultra sound "if required." It's typed a little funny.  I need to insist when I get there that he means :if required.  Or am I more nervous this year?  It's dangerous when they say before next appointment.  So many reasons to delay.

With all that, I completely forgot to mention that I haven't had any of those bloody marks under my skin for some time!  If they were responding to Tamox all those years, that part may be over.   

For now, I'm content not to worry about after effects.

I wish you health.

ONE MONTH AFTER TAMOX

This is not an April fool!

After I stopped Tamoxifen at the end of February, life got way too busy, and I didn't have time to feel abandoned, uncovered, unprotected, or anything.

When the shoulder  and back of neck pains started, I couldn't remember anything quite like that when I was taking too much Tamox.  I did remember finally that years ago in rehab, they said that even my purse was too heavy to wear on my shoulder.  Now I'm learning to carry groceries like we used to carry them in bags - sorta like carrying a baby.

Bottom line this far...I can't blame Tamox or leaving Tamox for anything.  (And yes, sometimes I still look right at my phone and can't see it, and I still leave my keys in dumb places as I did decades before I ever heard of Tamoxifen.)

I wish you health.

After Tamoxifen. Something spooky. MIDNIGHT SPECIAL

They're back!

Those scary looking red blobs under the epidermis.  Had them all the times in recent years.  Age ago, the oncologist told me big guys would come in with them, looking as if they'd been beaten up.  But somehow we'd get onto another subject and I never got him to narrow down on what they were or what caused them.

I coasted along, assuming that something...Tamoxifen or maybe Prolia...or both...were attacking my veins or capillaries.

Then in the past months, I almost never had one.  It sure wasn't less stress fluffing up my veins.  Recently, sometimes I didn't have any.

This week?  They're back..a couple big as my little fingernail and bloody-looking.  What is this?

Short time out for quick Google search, which I was planning weeks ago...

Didn't find much of anything.. platelets mentioned..but.   My labs from the oncologist were usually so good he was delighted.  My labs for other tests (from family doctor) are normal. 

Have you had these?  What was the diagnosis?  I don't see the oncologist for a year....so...?

I wish you health.

Half a month without Tamoxifen

HALF A MONTH WITH NO TAMOXIFEN:

Do I feel better without it?  Uh...No.  For one thing, we have measles in our area.  I remember Chicken Pox (Mom concerned about our eyes. Put us kids together in one room, etc,.)

Measles?  Nothing.  So I brooded.  Doctor offered the test.  Oops! Not immune.  Got the shot (not painful) but I have to wait six more days  before I can feel sure I'm immune.

So far, as to Tamox, I don't have muscle aches and "remembered after-effects" that some women have had.  So will that last?

So far, not scared into wanting more Tamox.

But:  It's been clear for years that oncologist was not correct when he told me I wouldn't have that tummy bulge he has.  I have it.  Did I get it from Tamox?  Who knows.  I was often lazy during those five years.  Now I'm collecting exercises for that bulge and more.

John's Hopkins has a giant pack of health handouts for diabetes, but I'm interested in the part: "The Skinny on Visceral Fat ... stored deep in the belly is the most harmful kind." There's a bit on exercise.  I'm having laptop trouble switching back to that, but I usually just ask Google for John's Hopkins exercises for visceral fat.

Okay, doctors and patients:  what's your experience with anyone being BETTER after leaving Tamoxifen?  How long will it take?

I wish you health.

PART 3 WINDING DOWN tamox HOPE during and after.

What will I do for hope, comfort, protection after these last few days of Tamoxifen?   

A year or so ago, a Tulane U press release landed on my screen. And in my life. Reaching for Delete key (who are these people, anyway??)  I saw the name of the stuff that helps me resist BC tumors- Tamoxifen.  And I kept reading. 

It was about a study in  CANCER RESEARCH.   Tulane U  Circadian Cancer Biology Group had wondered

when Tamoxifen could work, and 

what could stop that work.  

Specifically if Tamoxifen can keep away BC tumors while we sleep, and if not, what might interfere?

THEY  put breast cancer tumors into some rats. First they tried rotating sleep periods of light and darkness for the rats.

Then, later, during the dark phases,  they gave rats a night-light, faint but enough to suppress melatonin. Melatonin when alone allowed growth of tumors.

The press release summed it up:

Tamoxifen caused dramatic regression...with

1  high levels of melatonin during complete darkness" or
2 with melatonin supplementation during dim light at night 

BUT
 "When lights are on and melatonin is suppressed, these breast cancer cells "wake up" and ignore Tamoxifen. 

So, what can I do with "high levels of melatonin (some added and some produced by my body in sleep) plus TOTAL DARKNESS FOR SLEEP?

I have more questions about this, but I knew I had to sleep with NO light to keep my body producing melatonin.  ( What about warnings I get not to take melatonin every night forever') 

My plan:

1. My daughter brought over some dark felt and made a pretty curtain to cover my  floor-to ceiling venetian blinds window.

2.   I got some melatonin. I have taken it at times in the past.    So maybe, I will even add some melatonin in case morning light defeats the felt curtain, and I need more sleep.

3. I even removed the kitchen night-light,

4. and finally shut the bedroom door tight. to keep out light from adjoining rooms.

Once, my boss's client announced

  her bedroom curtains must provide absolute darkness!
She had the money, and she got her wish

 That client was onto the wave of the future.

Now more and more people and groups advise sleeping in darkness. 

I wish you health.

Remember:  Do not buy any medicine without consulting your doctor.

LEAVING TAMOXIFEN ...2/14

So, this last month of Tamoxifen is half over.  Developments:

My oncologist, at that last appointment when he was so hurried, ordered a chest Xray. He didn't even say why.  I think it was the follow-up after my mammo, which the mammo group urges for patients who have dense breasts. So I had the Xray Jan.10. 

It is now March.   The radiologist ( a stranger) has been paid by someone, and I owe a small amount for "not covered."

Yesterday, Feb.13, I had no more patience, called the hospital imaging dept..  They didn't seem to know about it.  (Actually I had a chance or two, years ago when I worked at CAP, to learn that hospital filing systems are not always systems.)  I got someone to look.  He called back an hour and a half later; said he found it and sent it to my doctor's office.

I called the doctor's office, finally got the desk that receives those results.  Then I had to talk her into getting someone to read the results right then.  Gold star to me for not losing my temper.    Finally the nurse read the results (since when do nurses do this?) and said it looks normal.



Yesterday had been a pile of paper to sort long before the x-ray fun.  I left the apartment for a few minutes.  When I came back, some sweet person had left me a candy cane on the door.  Changed my mood in a hurry (and I don't even eat candy.) 

PS  In my first days of Tamoxifen, before the dose was cut in half, I could never had handled a day like yesterday.  May the doctor who cut the dose have dozens of valentines!

You comments are welcome here or.

 @mlsfleming2.

LEAVING TAMOXIFEN

Today I will take the first pill of my last month of Tamoxifen.

The doctor was in a serious hurry at my last appointment.  He made nervous gestures and seemed to illustrate that I would be scared without these pills that may have kept me disease free for five years.

And I admit I wondered once or twice if I would feel vulnerable...unprotected.

Then he said something I never expected:  "You may be better."

Yes, I'd had lots of aches and pains at first. But not as many as a friend who was taking aromatase pills.   And I did have such "chemo-brain that I forgot half my physical therapy appointments. 
But I'd had a busy year with lumbar fusion, moving across the country, and so on. 

And I felt like a normal person, and my pains had almost disappeared after he cut my dose in half--from 20 to 10 mg. 

 Will I be wondering every morning when I wake up, how February will be? 
Or will I dare to believe I will feel even better?   We'll see.

Breast Cancer Survivors-Tamoxifen, sore feet, and our veins. Tennis or ...

Rare craving for ice cream today after studying Medical statistics made easy.  I finally got a Snickers ice cream bar and a quiet moment on the sidewalk to wonder if my sweats had really shrunk (maybe) and why my waist is in danger of disappearing beside my ever-growing abdomen.

Then along comes Dr. Katz and his article that I actually read.

Inactivity kills more than obesity: Let’s go beyond the headline
DAVID L. KATZ, MD | CONDITIONS | JANUARY 29, 2015  in Kevin, MD

 Fat around the waist was mentioned in the article.  Discussed, even.  So was the fact that more activity could mean less fat.  I guess taking heavy pots and bowls out of the dishwasher 2 or 3 times a day and climbing the library stairs isn't enough moderate exercise,

Then there's the foot-pain doctor:

My activity has been way down since my feet started hurting a lot.  The podiatrist, who knows about Tamoxifen, has found a potentially dangerous vascular problem.  I don't want to develop a clot.  His verdict:

WALK.

Yes, that's also what the spine surgeon preaches.  Yes, I'm the one who urged you to read "Cancer Survivors Rest in Peace." *  (The one about exercise to live.) 

Bottom line:  Even though my feet are very swollen when I wake up (not unknown with Tamoxifen) and they're often much smaller in the afternoon or by supper, I have to find some really good shoes that allow me to walk more.  Much more.  Morning and afternoon.

Foot doctor's orthotics specialist gave me a tiny metatarsal pad for my right foot in my everyday shoes. We considered a bonfire for my rainy-day-puddle shoes) after he literally rolled one up in a ball.   Gave me a "prescription" for a discount on some tougher, healthy shoes.  He also showed me some healthy shoes that will not shout "old crip."  And ones without the cute lugs on the bottom that make me fall on my face.

So Monday it's serious shopping for tough, supporting, seriously padded rain-or-shine shoes.  Hopefully I'll be able to walk in the mornings, and then compensate with padded socks as the swelling goes down. And walk some more.  (Need instructions for woman with lumbar fusion changing socks and retying shoes in Starbucks bathroom.)  Anything to make those foot veins healthy.

In short, I might have improved my life expectancy if I'd pushed, fought, for the right podiatrist some time ago, instead of curling up with too many books.

I wish  you health. 

* from Sunrise Rounds  http://sunriserounds.com

Tamoxifen? or spine nerves? causing foot pain

More and more often recently, I'd been skipping my walks because of foot pain and morning swelling.  A podiatrist had told me months ago that something in my legs could make my feet burn.  I do take Gabapentin at night for painful leg nerves that the spine fusion didn't cure.

My primary doctor sent me to another podiatrist for the foot pain. My regular physical therapist and a retired nurse friend definitely approved of her choice.

New-patient podiatrist visit

We had a long discussion starting with my worsening foot pain and the new development--swollen feet, also nerves, especially to my upper thighs, that were not healed by the spine fusion.  Showed him my home-made salvation, metatarsal pads.  As if that weren't enough, I assured him I can't tell when Tamoxifen is causing daily pains.

He will order a custom compounded cream for my feet.

One week later at his PhTherapy dept:

I showed up.  First I sat  in a firm chair dangling my feet that did not reach the bottom of the foot bath.  Pain.

Then off to the therapist's painful chair.  Pillow under legs did not help pressure on sore thighs. Massage with cream, measurements, electro-stimulation, ultra-sound.  Way too long in chair.  Pain.

Finally, en route to my car my  feet were starting to feel a little cold.

At home, my feet felt as if I were standing in snow.  After four hours of "freeze," and leaving messages, talked with nurses or aides who said the doctor called my snowy feet "a little flare-up."   Little it wasn't.  They told me to elevate my feet--done already.  We made an appointment for the next day.  I pretty much spent the evening sitting too long, reading a murder mystery, trying to ignore my legs and feet.

Next day: Learned that the physical therapist had used their cream called some kind of "...freeze..:"   He apologized profusely. I asked for warning about strong side effects, but Dr. said they don't warn because they're not common.  "Call the office and tell us."  I mentioned there wasn't a live person on the phone to tell.  Finally he gave me a hug! kissed my cheek, and went out.

His nurse told me what I tell other people, but don't practice sometimes:  Tell the PT you can't sit long, that you have to get up and move around, that he mustn't leave you on your own, that he must check on you every few minutes.  Good idea.  It's not the PT's job to guess.

Bottom line so far:

I never know what Tamoxifen is causing.
I don't know why nerves are hurting more.
The first PT didn't do much for the pain and swelling.

Next post - the $$$ RX cream

Breast Cancer - melatonin, darkness, another study

If you missed the Tulane sleep study post, didn't agree, or are still curious:

Found this in USA Today article on breast cancer in the military, which branched off into their take on cancer causes...One was:

Shift work. "A 2012 study of Danish military women is just the latest connecting night-shift workers with breast cancer- for both those in uniform and their families. Researchers found those working the swing shift were 40% more likely to face diagnoses. They suspect the suppression of melatonin that comes with sleepless nights may also inhibit the body's ability to fight off cancer-causing cells."  (bold highlight mine.)
.
This reminded me that I haven't figured out how to alter my sleep mask.

Also reminded me that I can go back on melatonin.  The semi-monthly "time out" period is over.

I wish you health.

BREAST CANCER: What do we get for all this?

The last couple of days, I've been plagued with muscle hurts that may or may not be from Tamoxifen.  This morning, before I leave the house, I'm shamelessly grabbing another quote from Sunrise Rounds:

So, without being callous, I do not wish that cancer patients return to the person they were.  I hope that in trade for their struggle they gain new knowledge, grace, balance and perhaps peace.  Maybe they will come to understand a purity or beauty in a particular relationship, a fulfillment in their work, honesty in thought or simply the vital ability to just say, “No.”   James Salwitz, MD

(italics mine)

TAMOXIFEN? or just overwhelmed? - Fuzzy thinking news

All year I've wondered about, worried about, searched the web about fuzzy thinking.   It crops up in support chat rooms, once in a study of rats, but that's about all.   And when I can't find my favorite sweater, and a dirty dish mysteriously appears in a cupboard, I worry until I find that what really happened was not caused by my thinking. 

Is fuzzy thinking a symptom of something so dangerous that the doctors are afraid we'll stop taking our preventive pills?  Why is it ignored in the press?   Does it really go away after a while on adjuvant meds?   Why don't they tell us anything? 

Then two days ago, I found some info in the most unexpected place! The book Therapeutic Landscapes* describes a study of women with recent breast cancer diagnosis.  They were assigned two hours in activity with nature per week, before and after surgery.  After controlling typical variables, they showed "significant improvement in directed attention compared with a control group."

 On page 15, the authors talk about prolonged mental fatigue and too much directed attention, (sounds like what patients deal with during every phase of treatment.)  And the damage to judgment and ability to concentrate.  That sounds like fuzzy thinking to me. The researchers don't say fuzzy thinking (after all they're scientists.)  

The book even mentions that an idol of mine, the late William James, suggested "involuntary attention" -- effortless thinking to repair results of too much over-directed thinking.   

So I got a some serious clues here to do some pruning and watering and walking in this safe, wooded neighborhood (East TX pollen or not) before I start thinking I've lost the car keys and that sweater forever by Tamoxifen-caused thinking.   We'll see.

*Therapeutic Landscapes, Clare Cooper Marcus and Naomi E. Sachs.

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.  

AFTER DCIS: What I want to know about breasts

In my life I've gone to a periodontist, two eye specialist MDs, and a podiatrist.  It occurs to me that it's unusual for anyone to die of eye disease or foot disease.   

Oh, and two "professional breast fitters" measured me several sizes too small, i.e., I can't breathe at all in a 32, and they didn't have any 34D.  Don't you wonder if the mastectomy fitters have any real training?

One put me in an expensive underwire.  (This was before the lumpectomy.)  I have no separation between my breasts, so I don't wear under wires.  That one was pressing hard on almost an inch of each breast.  I pointed this out.  She said, But look how good you look!! I ran.   Finally, in radiation, someone pointed out that underwires are not recommended.

So, why don't we have breast doctors?  Do any medical schools teach breast care?  Do schools of osteopathy teach breast care?   Are doctors taught anything scientific about breast care before we get a disease?  

While looking up Dr. Northrup, MD, I did find something about tight bras being a problem, and about not wearing your bra all the time.  That much seems like good advice.  With heavy breasts, this is a tricky decision.  She also mentions avoiding a lot of estrogen.  She offers a monthly letter about breasts, but I probably won't subscribe to it - her focus for general protective health is different from mine.

And  there doesn't seem much knowledge about ongoing  breast care after lumpectomy and radiation, except stay hydrated.  I do leave my bra off for some periods, but after awhile I have some breast pain.   I also have periodic slight breast pain with my bra; and my radiated breast, months later, seems warmer to the touch, with a pink and  apparently swollen aureole.  The nurse at the radiation center is not much help.  I wonder if I'll get the doctor if I call again.

I've watched the medpage hot topics breast video, but I want to know:  Are any specific substances being tested for better adjuvant therapy?  Will more than a handful of women be able to afford them?

 Are we still going to be taking Tamoxifen fifty years from now? What can we do to avoid uterine cancer in the meantime? Memorial Sloan Kettering list Tamoxifen as one of the six "key risk factors for endometrial cancer."  Endometrial cancer is not my idea of a little problem. 

 Will Evista become more affordable?  

Are women really quitting Aromatase inhibitors because of the nasty side effects?

If a woman has had CIS in another part of the body, doesn't that make mammos more advisable?

What do the studies mean when they say a cancer drug did not reduce mortality?

TAMOXIFEN - e-mail fights fatigue

My email was a disgrace.  Rather than have some overload trouble that I've had in the past, I decided to clean it out.  And of course, it was generously salted with posts from Dr. Salwitz and others on the same subject:  exercise.

Unfortunately, walking gets neglected during the pollen season.  Pollen is as popular a complaint here as earth tremors are in L.A.  And like everything in TX, the pollen clouds are bigger.  Sometimes I remember to hurry out before lunch - the low pollen hours.

And a sneaky voice in my head says exercise may give me energy.  

So I sorta modified the exercise routine I had in L.A.  Since I'm on the tile floor here, I moved the whole program onto the bed (very dangerous for yawning, Tamoxifen me.)

Now I elevate my feet and use those exercises I learned in bed in post-spine-surgery rehab, including that old favorite:  the butt squeeze and the others I've posted about on this blog.  Plenty of stretching, which my spine surgeon mentioned once in passing.

Plus some stretching my legs out, rotating my ankles, and even flexing my toes.  (Tamoxifen is not responsible for my feet hurting;  I think it's more the A word, arthritis.  Or perhaps I mean the B word--birthdays.)

My little dumbbells are right beside me on the bed, for a few arm exercises from the old L.A. floor routine.

And the daily dozen: combining the tendinitis arm presses with my neck exercises, now more urgent since a visit to the doctor for shoulder pain.  I'm not even telling the doctors about that arm/neck combo.  That's my secret, and I'm certainly not taking responsibility for telling it to you.  

But it works so far, and I can turn my head very nicely to back out of places full of pedestrians and the occasional colorful, jumbo trash bins.

Time now for the warnings:  Do not do any exercises without consulting your doctor.  Don't.  Although it's probably ok to elevate your feet while eating soy-free chocolates.  

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.

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.  

TAMOXIFEN: LIFE WITHOUT SOY . . Part 2

After menopause, my doctor suggested phytoestrogens (plant estrogen) for hot flashes and various other problems.  I put flax seed on my cereal, I bought soy milk by half gallons. At work (no lunch break) I had a soy bar for lunch and one later.  When my employer went out of business, when I moved in with a friend, even when I came to another state to stay with my family - year after year soy and flax were my staff of life during changing cuisine.  

And let's admit this: the phytoestrogens may help us look like we're taking an elixir of youth.

Then, that call back for more mammograms.  DCIS.  I was overwhelmed, but not so overwhelmed that I couldn't read my pathology report:  the abnormal cells were nourished by estrogen.   

The famous hospital literature seemed in conflict on the phytoestrogens - pro or con.  I started tapering off. Stopped flax, cut down on soy.  Got constipated, had more trouble with my sinuses, gained weight.  Finally, as I feared, the medical oncologist said "If it says soy, run."

When diagnosed, women already had a medical situation even if we were eating healthy food every day.  A doctor in spine rehab said I was probably the healthiest one there because most of my meds were not prescriptions.  So what!  I needed my OTC stuff including allergy meds, generic Benadryl for sleep with nerves damaged by the spine injury.  And there's the GERD list that forbids everything one would want to eat, even most fruit. 

That part of life goes on. But now it goes on without the forbidden soy, and without diphenhydramine (Benadryl), which interferes with Tamoxifen.  And in a new place, with new doctors, how in the world do you know which problems are due to no soy and new medicine and which aren't?

My 11th day on Tamoxifen pauses for an hour so I can shop for something, anything without soy. There is only so much celery and chicken one woman can eat.

And I'm afraid I'll start looking 92 instead of never mind how old I already am.  Afraid of marching into a job interview alive, but looking like I won't be for long.

Yes, I am incredibly grateful for my cure and the fabulous medical people involved.  No, tamoxifen did not cause my problems. Yes, I'm grateful for these preventive pills.

And now I'm a split personality (insert smileface) living with my usual health picture while happily Cured! of DCIS and almost able to forget about possible Tamoxifen side effects.  

TAMOXIFEN - Life Without Soy

Yes, the doctor did say:  If it says soy, run.

Yesterday morning I returned some fiber bars.  At the very end of their ingredients:  soy.

My regular market is huge.  I went on a soy hunting safari, and discovered  I'd have to live on twigs and berries.  My standbys from Quaker Oats - cookies and Oatmeal to Go contain soy or at least the isoflavones.  So far I haven't found soy in the grocery's private blend instant oatmeal. 

Just about everything else I touched had soy isoflavones "for emulsifier."  

I baked regularly until I was in my fifties, and never needed an emulsifier.  Neither did my grandmother.

Now I read even chocolate bars need emulsifying,.  

Oh, well, the GI doctor says no chocolate, anyway.

I came home with a small bag of trail mix, some white crackers that are definitely not whole wheat, some fruit, a muffin, and a jar of jam.  

This morning, I went on a soy lecithin safari on line:

 From Sloan Kettering  INTEGRATIVE MEDICINE  Information about herbs, botanicals, ...SOY

Herb-Drug Interactions

Tamoxifen: Animal studies suggest that genistein, a soy isoflavone, may antagonize the effects of tamoxifen on estrogen-dependent breast cancer (MCF-7) ^{(38) (39)}.

Why did I get on line to the medical sites again? Searching for a way out?  A loophole?  Instead, it's back to the days when a cheese stick in my purse would get me through.

Healthy eating.  Hmmm.