Friday, May 30, 2014

Is it the Tamoxifen? Or estrogen deprivation? Or what?

My wonderful L.A. mechanic used to say:  We're not 29 any more!  And everyone used to say if you're over 40, you woke up feeling worse in the morning than when you went to bed.  I'm way past 40.  But they didn't say you would walk toward the car one day and suddenly think: 

I feel ten years older! 

This morning, making coffee earlier than usual, I felt for a minute as if I would just crumple down on the spot and sleep.  It reminded me of an awful lassitude I once got from Codeine, but now it's something else.  What?

And I walk older.  My tutoring client insisted on carrying some of my books--I think she could tell by my face that I'm not energetic or comfortable.

It's not three months yet since I started Tamoxifen.  Sloan Kettering's site on Tamoxifen was not comforting. Still need to see ophthalmologist and dentist, and probably podiatrist again.  All this doctoring can keep a person from feeling healthy.  

Two weeks until my blood work.  Three weeks until I see the medical oncologist.  

I wish you health.

Thursday, May 29, 2014

Now On Tamoxifen, so I insist on a gynecologist. . . first visit

This is not the first time I've been referred to one doctor and ended up with another.  Funny thing is:  so far I've liked the "unexpected" doctors and liked the NP I didn't expect to meet.  And I like the doctor I saw Tuesday.  The office decor was upscale, and go ahead and laugh, but it seemed hard to feel sick there.  (Maybe a little psychedelic to be among all those enlarged baby photos.)

She did a pelvic exam and listened kindly and respectfully to my history and concerns about Tamoxifen side effects.  Apparently she is not new to the Tamoxifen regime, saying that later, as the oncologists saw me less often, she would rotate appointments with them --see oncologist, then in three months see her, etc.

Then last night I realized there was no evidence that she did a Pap test!  I don't know whether it's worth calling to ask why she didn't?  (Most of the moments I hate most start with these decisions about whether to call a doctor with a question.)  

 And so, in spite of a major GYN shortage here,  I have one I like so far, who knows me.  And another health area that was neglected during spine and DCIS treatments is no longer neglected.

Bottom line:  she thinks I'm okay right now.

I wish you health.

Tuesday, May 27, 2014


It took several days.  Maybe a week after I read that manufacturer leaflet that said Tamoxifen doesn't prevent all kinds of breast cancers.  No, in fact it took the whole time since I read my pathology report. Today I finally got the point.

Since Tamoxifen just stops estrogen from binding with breast cancer cells, it can't do anything about cancer cells that are not estrogen-dependent.  That also explains a few statistics in the Mayo Clinic Breast Cancer Book about mortality from "other cancers."

Maybe I need some of that required nature walking (as soon as we're past the flooding this week) that has been prescribed for directed thinking.  Right now it's nature wading.

And also when the rain stops, I probably need to return this wonderful exercise mat that contains substances "the state of California considers carcinogens."  Protecting the immune system is a lot of work.

I wish you health.

Sunday, May 25, 2014

A PHARMACIST is not your mama! Read everything. Check. Really.

My pills (and lotions and potions) are one area where I try to be organized.  Every weekend I fill my ultra deluxe pill organizer.  Blue lids on one row of compartments mean pills I take at supper time or bedtime.  Yellow lids mean take those pills in the morning.  (One of them way too long before breakfast.)

The drawer with pills in reserve seemed to have too many pill bottles.  I remember that last weekend the pharmacy department filled a couple of other prescriptions to save me a trip later.  (They reminded me that they had called about them.  I often ignore calls from them--they just call too many times.)

Still, I was lining up these bottles and an alarm kept going off in my head.  Something is not right!  Finally, finally found the problem.  The levothyroxine label was on a bottle that the manufacturer, luckily for me, had pre-marked Omeprazole.  And the Omeprazole label was on the bottle that obviously contained levothyroxine--I've taken it so long I can almost identify it in the dark.  

Everybody makes mistakes.  I make them.  Doctors make them.  Hospitals make them.  And pharmacies make them.  

Who wants to go over to the chairs, open the bags, deal with all the paper and staples?  I'm often in a hurry.  I don't see the actual bottle until I get home, and I'll bet you don't either.

This label mistake wasted my time, but was not huge problem.  No emergencies were caused.  But I had unpleasant medication problems two years ago in a hospital.    They left me with an ultra-sensitive mental alarm.  Shouldn't you have one, too.? 

I think I need to show these bottles to the pharmacy.  Without anger.  

And I need to read every leaflet with every new Rx and refill.  Starting with the description of the pill.  Did I read the description of the Tamoxifen pill before I took it?  I don't even remember.

And by the way, I'm training myself to read the rest of the leaflet, too.  I do know that the druggist and/or the manufacturer will mention new cautions for the medicine on the leaflet, not always on the label.  

I wish you health.

Friday, May 23, 2014


The nurse navigator at my hospital (the neighborhood hospital I've had plenty of "opportunities" to use) is a delightful person.  She took my bp one day that I was due to see the oncologist during the radiation sequence.  And I saw her again accidentally in the surgeon's waiting room.

The surprise is that I didn't know at first she was a cancer navigator, and the cancer center didn't mention that someone like her was available.  I've already blogged here about my experience with cancer center social worker, so we won't go into that again.

This morning, one medical news service I subscribe to used the word "Navigators."  I finally deduced they were talking about "navigation" advisory companies.

But of course, I had to look up hospital navigators, including at my hospital's local branch, and find out what they do.  I was amazed and a little annoyed that our cancer center never mentioned her.  

I learned that Cancer Nurse Navigators can help with decisions as well as logistics and coordination and that wonderful component - support.  I had simply gone to "meet" the radiation oncologist my surgeon respects, and was presented with the decision at that first meeting.

Of course, my DCIS was not life-threatening.  Because of that, the cancer center did not seem to realize I was new to Texas and overwhelmed by the diagnosis and meeting all the new doctors.  

Since then  I've talked to this woman several times about the education classes she organizes, and various other matters, without ever knowing that she might have been available to help with the radiation decision and might have been a very welcome source of support.

I did meet some wonderful people - techs, doctors, and a couple of the radiation therapists.  I don't mean to claim that my life was unbearable without knowing a Nurse Navigator.

I'm just thinking there is an information gap there that kept me  from knowing about her, and perhaps kept other women from knowing how much she can help. 

Does your hospital cancer center have a nurse navigator?  Were you told about her?  

I salute our Nurse Navigator.  

And I wish you health. 

Thursday, May 22, 2014

TAMOXIFEN, Cancer cells, and Magic Monster spray

After posting yesterday, I remembered watching HOT Topics, Breast Cancer 2014 Part 1.  The doctor who impressed me so much, Lisa Carey, MD, told us that some breast cancer cells are looking more like other cancer cells than like breast cancer cells..  Does this raise questions about Tamoxifen?

The new study (see May 5 post) may help women who don't metabolize Tamoxifen completely  . . ..... but what about those other cells?  Developing endoxifen as a drug may not make it the magic spray that keeps all monsters away from my breasts.

I can wait for some pill that will stimulate my own immune system so much that I won't even need pills.

Or I can do what I know to do now for my own immune system.  (This is the part that some people seem to tune out.)  And it's the part I often .neglect.

I can use interacting with wonderful people as magic spray.  Clean air is magic spray--I can look for places away from traffic.  I can keep looking for a good counselor.

I can do the things all those doctors in The Immune Power Personality have found helpful to our immunity. Like meditating (my way.)
Like  being more assertive, (not abrasive.)
Like expressing in a safe place what I want and what I don't want.
Like writing about trauma I've never talked about.
Like noticing how my body reacts to work, to noise, or to secretly dancing, and acting on those clues.
You can do it, too.

I wish you health.


Wednesday, May 21, 2014

TAMOXIFEN? - Scary reading, and exams that aren't optional!

I read murder mysteries.  But I don't like the ones that are too scary - the ones where we know in ugly detail what the psychopath is planning to do to his next defenseless victim.

This morning I read something even more scary - the manufacturer leaflet that comes with Tamoxifen (Nolvadex.)  I've known for years that warnings for medicine change sometimes. (We usually get that news on the Rx bottle or a leaflet that the drugstore publishes.)  And we often ignore it   But for certain powerful medicines, the drug store will give us the manufacturer leaflet, full of too-small print, and very important.    

The Tamoxifen manufacturer leaflet says:  "Because Nolvadex does not prevent all breast cancers, and you may get other types. . . "

WAIT A MINUTE!  This is the first I've heard of this, despite the deluge of medical news I get every day for this blog.

Just a week ago, I learned of new research to help women who don't metabolize Tamoxifen in a way that helps them.  (See May 5, DRUG NEWS - Bypass Tamoxifen. . .)  And I've heard a woman say:  "I took Tamoxifen and the cancer came back!"

After that, I insisted that my doctor refer me to an OB/GYN.  I have an appointment with one next week.

Now I read that this stuff  I take doesn't even prevent all types of Bc!  So I decided:

The new OB/Gyn doctor had better be enthusiastic about examining my breasts herself, as well as below-the-belt focus. Or else.
Daily exercise isn't optional.
I need to pay even more attention to my body.
I need to be even more careful, let's say obsessive, about what I breathe, eat, and put on my body.  Like reading labels.  And knowing the names of dangerous stuff.
I need to tell everyone to read the manufacturer leaflet that comes with Tamoxifen, and in your "spare time," read the drugstore-published leaflet that comes with other Rx.

I wish you health.  

(For some reason, the search feature on my blog is not always complete.  Please contact me if you can't find a particular post.)

Monday, May 19, 2014

HELP THE DOC DO HIS JOB . . . all you need is a pencil

It really is important that we ask the right questions in the doctor's office.   And the right questions are complete:  not why does it hurt, but why does it hurt after I eat?  Why does it hurt at work?  

After all, if he doesn't ask the right questions, then what?  There's a reason so many hospitals are teaching doctors to communicate.  What we need in that office is not a speech, but a conversation.  And any conversation is partly our job.

To do our part of the job, besides a pencil we also need a clock!  And a calendar.  Why?

Let's go back to that chart I never could keep, in The Immune Power Personality. *  What the chart is really for is paying attention to our symptoms.  Dreher reminds us, that unfortunately, it's harder to pay attention to symptoms if we just pop a pill to quiet them so we can get on with our daily business of doing too much, criticizing ourselves, endlessly rushing forth unprepared.  

He's right, I know.  So I've abandoned the charts and started using my too-small purse calendar.  That way, even if I'm unprepared for a doctor visit, the records are with me.

In the calendar, I write on that tiny page that the waves of fatigue I associate with Tamoxifen often occur at about 9 a.m., when I've already had a good breakfast.  I write down a word about what my acid reflux is doing right then.

I write down whether I've had coffee, or chocolate, or milk.  (Sometimes it feel like the doctor should have a confessional with a curtain so I can't confess what I ate, and the exercise I didn't do.)

And a record would have helped to remind him that although there was big anxiety right before the backaches started, there was also too much of the depression (another thing I blame on Tamoxifen) for me to take the anxiety pills he wanted me to take.  

I can even tell the doc I have exhaustion just before computer lab.  Or I have stomach trouble getting ready for my appointment with client Susabella B.)

You can tell doctor Jones you have more stomach trouble after a do/everything day, a rush-too-much day. .
Or your feet hurt when you woke up every morning for two weeks.
And with a calendar, you can be sure to let Dr. Sally know if the symptom hurts for three days, goes away for a week, then comes back every week.  (That's important, or they wouldn't mention it on medicine bottle labels.)
In short:

A clock for: What time does it hurt.  
A pencil to write down: What happened just before it hurt.   
And a calendar so I can tell the doc how many days it hurts, and which days of the week.   (There was a study once that showed the big heart attack hours are Monday morning.  Guess why.)  

Then, it's up to us to take the calendar out, and tell the doctor what's going on.  We deserve a turn to talk.  We don't wait for him to ask.

*Henry Dreher, Plume/Penguin, 1996

Saturday, May 17, 2014

SURGERY, AFTERMATH AND . . .why second opinions are not optional!

Friday night:
I am so upset about the story I just read  in PULSE - Voices from the Heart of Medicine.  It's dated May 16, 2014, and called Collateral Damage.

Saturday morning
I didn't want to get out of bed his morning  Finally I realized that Pulse story is still in my mind.  It reminded me of a short film created by a doctor I was once lucky enough to meet and talk with.  It was called Patton, MD, and it was about doctors who want to solve everything by cutting.

It reminded me that I take Tamoxifen and there's a tiny chance I may need hysterectomy some day.  And it told what can happen when we're too overwhelmed to really hear scary answers to our good questions--about side effects, about after effects, about how we will be after surgery.  And questions about what can we do instead.

The most important question wasn't asked.  We should never leave home without that one: What's the phone number of a doctor I can ask for a second opinion!

When we are overwhelmed, we can't  hear alarm bells ringing in our heads.  Can't hear little wise warnings our experience, our instincts give us: "There is something wrong here: This doesn't sound right! I've never heard of so much surgery!  This sounds like overkill!"  

After a surgery, we may not feel like suing; we may think the only problem was the surgeon didn't listen.  We may be even more overwhelmed than before.  But in fact, her surgeon gave plenty of evidence about not giving a damn for her or for his mistake.  And her primary doctor doesn't count as a second opinion.

If you've had cancer, if you fear cancer, if a woman you love has cancer, please read that Pulse story and think about what to ask doctors.  I use the plural intentionally.  Yes, her experience may scare you.  No, it may not happen to us.  If it doesn't, it may be because we asked the right questions, like: Who's a good doctor to go to for a second opinion?   

I wish you health.  And caution.

Wednesday, May 14, 2014


Before DCIS, I remember feeling suddenly tired in the daytime.  I blamed getting adjusted in a new state, moving twice in a little over a year, and still recuperating from spine surgery.  Sometimes, I would just have to take a nap.

Tamoxifen, after two months, makes the daytime fatigue attacks more intense.  Nine a.m. is a fairly dependable droop time.  As Dad used to say, my head "feels full of cotton wool."  And sometimes if I'm home in the afternoon.

In desperation, I've ignored the digestive health doctor in favor of morning and early afternoon coffee breaks.  (But no caffeine on an empty stomach.)

Today, in search of comforting news instead of the usual experiments on rats, I opened Cancer Research UK.  This is a charity organization, no doctors mentioned.  I usually avoid sites like this, but it seemed like a better idea than another nap.

I turned to the Tamoxifen page. In their Common Side Effects, they say "Fatigue (tiredness) affects about one out of four women.  1 of 4!  Yet the survivors I know never mention it to me.  And a couple of websites I frequent say that half the women with cancer therapy fatigue never mention it to the doctor.

I clicked "fatigue from cancer drugs" and then "What you can do about fatigue."  And there it is:  the thing I avoid so often now:  exercise!   That thing they say will keep me alive.  I even posted about the Therapeutic Landscapes quote that two hours of nature walking a week helped some cancer patients with the kind of thinking and poor attention span I'm worrying about. At least I do climb the stairs at both libraries

But I have been avoiding my weights:  too busy, and skipping my walk: it's storming out there again.  My new copy of "Strong Women Stay Young" is in the closet.

I see a vicious circle here:  The more depressed I am, the more I don't exercise.  So I get more depressed.    Is that the whole story?  I think there's more to this.  First, I want quicker results.  If a few days of walking don't help, I go back to the rest of my to-do list.
Second, I think a key is:  It's boring.  I used to do my weights in California with the TV on.  In the valley, I only did a few useless minutes--didn't get bored and didn't get results.

Third:  And maybe most important:  Since it's boring, I need to balance it by giving myself time for things that aren't boring.  You know, like fun!


Tuesday, May 13, 2014


A week or so ago, I told the doctor that I had started having backaches.  I mentioned that someone had given me a list of anxiety symptoms, and backache was second on the list.  We had a long talk about medicine; he asked me if I would take the anti-anxiety medicine. I stated my objections.  He assured me he was giving me a dose a baby could take.  I asked if I would be safe to drive after the first pill, and he said No.  told me to take it in the evening when I "settle in."   As he walked to the next patient, I looked at the prescription:  Diazepam.  (Dp.)  I called out, but he didn't come back.

I had told him I would take it, but when I got home, I considered my age and the two things I already take for sleep.  I forgot about the effect  those other meds have on me when he said "anti-anxiety." That may not be the first time I neglected the whole picture with him.  
I looked on the internet and found a lot of warnings to avoid giving Dp to people my age.  I do not want to fall again.  I looked in my Rx insurance book, and they want prior approval before they cover Dp.  Seems like another red flag.

Now the situation that caused the anxiety seems ended.  And the backaches are so mild that if I'm busy enough, I don't notice them.

This is the second time I have not taken medicine he has prescribed.  He spent a lot of time with me on this. And I still have a scrip from the podiatrist for compounding an anti-inflammatory cream that I haven't filled. 

Am I now Ms. non-compliant patient?  A time-waster?  

Where does my responsibility to the doctor clash with my responsibility to myself?  And my right to make decisions?

Monday, May 12, 2014


When the doctor opens the door to the examining room, my mind has been known to stop working.  We start talking on one item, and then I get home and wonder why I still don't have the referral or some answer I want.  

My brain-brake or suddenly getting tongue-tied can be worse if the doctor hints I may have something serious, or if he mentions possible causes that may be the problem of another doctor, like my spine surgeon who is in another state.

Especially if he talks about a remedy I am scared to take, I need to know what to say.

I need to put a list of important questions on my bulletin board (or refrigerator) and learn them.  


What is the most urgent of the symptoms I just mentioned? 

What is the most serious of the symptoms I have?

(After tentative diagnosis:)  What else could this be? 

What is the simplest way to find out which disease it is?

(When the doctor says: We should take this symptom seriously, so you're on a three-month visit plan) What do I do about it in the meantime?

What is the simplest thing I can do about it?

What is the most important thing I can do about it? 

What's the phone number of that referral?

Will insurance cover this medicine? 

Can I stop the medicine if I have a medium serious problem with it?

The number one question I should have asked before lumpectomy and radiation: Exactly how do I reach you by phone if I have a serious trouble with this medicine/illness/treatment after hours?  Sadly, staff members can forget that we are perhaps overwhelmed.

 As I've blogged before, at the radiation center, I didn't know I would need directions to get a pager - no answering service?  (I hadn't called a pager for years.) When we're hurting unexpectedly at night, we need to know exactly how to get help, so don't go home without an answer.  And don't be shy about calling again:  at least one message I left with a service lately was never delivered.

So now I will hang up my list of these questions and actually learn some of them?  Do you have others to share here?

I wish you health

Saturday, May 10, 2014

No soy? Starbucks steps up! Duncan Hines, too?

Glad I didn't give up on Starbucks.  There on my "home" Starbucks counter last week were some small nutrition bars with no soy on the label.  Lots of nuts, and tasted pretty good!

This is a big relief, since at times I'm hungry for lunch when I get there.

Then, an additional surprise at home!  Some Duncan Hines Simple Mornings muffin/quick-bread mix with no soy on the label! Not even in the "manufactured in a facility. . ." section.   I haven't written to them to check on whether there is soy in their flour.

Maybe things are looking up.  After all, a lot of people who never heard of Tamoxifen are unable to tolerate soy.

I wish you health.

Thursday, May 8, 2014

Breast cancer, DCIS: Questions I wish I had asked

There are questions I only think about after I get home after a doctor's appointment, when the doctor has gone back to his Houston office or on a vacation.  I need a "question reminder note" pinned to my mitten like a little kid, or to my car sun visor.

And sometimes I don't realize what I should have asked until I fill out the patient feedback questionnaire.       The questions are sometimes general/all purpose but important.  Other times I don't have enough information from any research to know what I should ask:

Specific to breast cancer:  Looking back, the first day of the boost was worse than all the rest of my DCIS treatment by far.  How could have guessed what to ask,  what to expect.  I wish I had had a crystal ball.

 I would have asked the radiation oncologist (or my regular radiation therapist, who was better at talking to people:)

Exactly what happens that's different on the first day of the boost?  Please be specific.

What's the longest that first boost treatment can take?

My breasts are heavy and not firm:  will this complicate the first day?

If I had pressed for details, maybe I would have been prepared for an unfamiliar radiation therapist, rushing in and out, uncovering me endless times, changing my position, making adjustments. At the same time one of my regular therapists on my other side would be taking films to see if they were on target.  If I were a woman with five young kids, all this rushing around (combined with a really painful arm) might not have given me the shakes.

(Oh, and also: What medicine can I keep at home in case an itch develops without warning?)

And are any of my activities limited?

Good questions I did ask the surgeon about lumpectomy:

What will I be like after the procedure?

What will I be able to do?

Can I lift my little weights?

 Again, only with a crystal ball, would I have known before the lumpectomy to ask if I should buy a different bra or a bra to wear at night to keep my incision from any strain, since my breasts are not firm.)  Luckily, Divine intervention or research  prompted me to buy the little-unbra, almost like a regular little top.  And I did sleep in my soft regular bra for a few days.

Later, maybe next post, some General Questions to Ask Doctors.

Wednesday, May 7, 2014

Cut Cancer Worldwide? What about the US?

This week, medpage introduced me to the "25 by 25" goal - which aims to cut worldwide premature deaths from certain non-communicable diseases (NCDs) by 25% by the year 2025.  The article gives findings by researchers of Imperial College London, indicating if desired lower levels of six risk factors were met, we could at least get close to the 25% goal.  

Cancer, of course is one of the four targeted NCDs.  As far as I can tell, the 25% lower death goal figure is for all four NCDs together.  I need to check further, but my main concern is always cancer.

And the worldwide culprits that need reduction are " tobacco smoking, alcohol use, salt intake, obesity, blood pressure, and blood glucose and diabetes."  

My main question is:  will this plan work here in my country?  

I've read about pandemic tobacco smoking in at least one country that is a major factor in their cancer.  Cutting smoking there will help.  But smoking is lower here; cutting it further here may not make much difference in our premature cancer deaths. 

So my next question is:  will we really do anything about second and third-hand smoke here?  I am saddened and amazed by the  "nobody's gonna tell me what to do in our own car" crowd.  The babies in those cars go home to smoke saturated furniture, blankets and teddy bears. And I go forth into smoke-filled waiting rooms at doctors' offices Yes,I've ranted about third-hand smoke saturated clothes in waiting rooms. (Two weeks ago, two of us waited our turn in the hall because of smoke in the clothes and exhalations of one patient.)    Insert your own answer here. . . Will  your doctor ever say:  Do not smoke in the car!  You have a child!  Can your doctor and her patients afford to get HEPA filtered air in their waiting rooms?  

Then there is the matter of other pollutants.  Industrialized countries have their pollutants that we were genetically never intended to process.  In the EU, many such pollutants are forbidden in the food, the clothes, the air. So I say, are we going to do anything about pollutants here?   Would eliminating some of them automatically lower levels of the six culprit factors?

We should be able to get close to the targets levels.  In the medpage article  Rifat Atun, MBBS, MBA, of the Harvard School of Public Health points to:  "' . . .   highly cost-effective interventions available, which could be readily scaled up in all countries."   

I dare  say  the problem that's holding up reaching the target level of these Risk Factors is evident in our newspapers and online news every day.  As Atun adds: "'political apathy prevails.'"  

My political party has never asked me for money to cut pollution.  

Who you gonna call?  Anybody?

Monday, May 5, 2014

DRUG NEWS - Bypass Tamoxifen in our lifetime?

Mayo Clinic mentions low back pain as a possible side effect of Tamoxifen.  How is a woman with lumbar fusion supposed to know what is Tamoxifen and what isn't?  We can't just quit Tamoxifen for a month and see what happens.  I am almost fanatical about my posture this week.  And I still wonder if the spine is going bad next to the fusion.   Someone gave me a list of anxiety symptoms - back pain was the second one on the list.

While looking for more on this, I stumbled on a Mayo Clinic online magazine I didn't know existed. In a section called My Very Own Prescription, they report that a genetic difference in women affects how Tamoxifen can work.

Of course that reminded me of the Breast Cancer Hot Topics on medpage that I've mentioned here.

Mayo Clinic says researchers have been looking at women "who were unable to metabolize the drug to its most active form, endoxifen. Now these researchers are proposing to bypass the role for human metabolism by developing endoxifen as a drug."

NCI will work with Mayo Clinic on a trial that will be conducted there.

If you want to read that article, just Google Mayo Clinic Forefront and scroll down.

A far-off chance is better than none.

Saturday, May 3, 2014

Breast Cancer: A new drug on its way for some?

A targeted therapy for HER2+/hormone receptor-negative (HR-) disease, with a new drug added, is now eligible for Stage III testing, according to medpage, April 11:  Novel Drug 'Graduates'. . . John W. Park, MD, of the University of California San Francisco, reported that a statistical model showed the regimen has a "'95% probability of superiority versus standard therapy and a 79% likelihood of success in Phase III.'"

This is wonderful, of course.

And yet I can't help wondering if women with other Breast cancers read the news with a sinking feeling that their ship has not come in.  Again.   

At least I hope these announcements of successful drug tests and planned drug tests remind all women that they are not forgotten.  That breast cancer is not forgotten.  But the progress is slow, and we are dwelling in dangerous times.  

Something strange just happened.  I went back to the Sunrise Rounds post I referred to yesterday, looking for a certain quote.  But it isn't there.  It's just a conclusion I drew from what Dr. Salwitz wrote:  Cancer rebuilds us.  And we wish there were some better way to get rebuilt.

So the tests go on, but. . .

The only thing that works for all breast cancers will be prevention.

I wish you health.

Friday, May 2, 2014

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)

Thursday, May 1, 2014

LUMBAR FUSION and feet and . . .

I had a backache yesterday, and maybe the day before.  And yesterday I also went to see a podiatrist for the second time in my life.  I was in the car far too long, partly because of parking problems, and there was a lot of bending in the podiatrist's office.  The back still aches.

The doctor told me more things than I could absorb at this busy and stressed time in my life.  One of them that I certainly will remember is his mention that the lower spine affects the nerves to our feet.  Why did I never think of that while preoccupied with how much the fusion surgery did or did not stop nerve pain in my legs.  

He said the lower spine could be related to feet hurting, burning, itching!  So maybe this new cream I use is not addressing that whole situation.   Maybe we should write ourselves a memo to ask doctors that all-important question:  What else could this be?

I was very resistant to the idea of custom orthotics because I don't ever find the the shoes I would need to put them in.  Also reluctant to get an x-ray after having what I feel is too many in TX, including the radiation for DCIS.

I'll take his suggestions for what to do first, like go and look at a certain shoe insert at the place where I got my ankle weights. Maybe buy the analgesic custom prescription.

And I'll redouble my efforts at better posture.  In desperation this morning, I used a flexible pack of baby wipes for a lumbar pad in my reading chair.  I'll also set the timer for a  half hour limit at the computer.

Mainly, I give him gold stars for patience, and for being a specialist who is aware of the rest of the body.  And I'll ask my primary doctor next week about exercises, maybe even Pilate's for spine health (without another X-ray, please?)  For now, I won't dwell on that tiny fear that the lower spine is in new trouble. It ain't over when the fusion's over.

I wish you health.