AFTER RADIATION - Stayin' Alive . . . more

Today on Sunrise Rounds, Dr. Salwitz talked about the pain of losing touch with patients in hospice.  (Yes, I know you don't like that word.  Neither do I.)

What struck me was not his sorrow so much as the concept of the big team the hospice patient is suddenly surrounded by, while deprived of Dr. Salwitz's familiar presence.

I've met plenty of doctors since my move to Texas on a wheelchair flight after spine fusion.  As I've mentioned, not long after I became pretty sure the spine would stay fixed, I was diagnosed with DCIS.  And more new doctors were added to my life.

I still miss my beloved California doctor who visited me each night near midnight after the fusion.  And I miss the GI doctor in CA.

A couple of doctors I met have been friendly,  and I am already very comfortable with my surgeon.  But I have a long way to go before I have a medical support group around me.  Some of us are very hesitant to change doctors during cancer treatment.

All of this is flying around in my head as I look forward next week to meeting the medical oncologist.

My surgeon's appointment today had to be cancelled because of a bad cold that aggravated my inherited sinus problem.

At the first meeting with the medical oncologist, I'll need to know what to do to live with crazy sinuses -- I've read that my standby antihistamine  is  incompatible with Tamoxifen.  And like most of us, I have other questions.  The surgeon thinks I will like this oncologist.  I need to like him.  I need to trust him.

Yes, really, I need to like him.

Be well.

BREAST CANCER - Stayin' Alive . . . that book again

In THE IMMUNE POWER PERSONALITY, on p 76 of my copy, my bookmark is a thin red pen.  The page is that important.

Author Dreyer refers to a famous study with breast cancer patients by psychiatrist David Spiegel.  Spiegel formed a group, and half of them were also in a support group along with the medical treatment.

The group encouraged them to be aware of their needs and feelings, share them with the group, get social support from the group, and be more expressive and assertive with doctors and relatives!  
 
Women in the support group got better at doing that, and lived twice as long as the patients who got only medical care!

Maybe I've talked about this before, and I may again.  Few things are more important than how I think and how I act on what I know.

PS - If you want to read more on flame retardants

Probably the main place I read about CA flammability rule effects and thyroid cancer was from Yale news:
http://news.yale.edu/2014/01/06/ysph-researcher-explores-link-between-flame-retardants-and-thyroid-cancer



More about the overturned CA flame retardant  rule was in my  PSR daily email.  Here is one link where you can read more,

http://www.psr.org/environment-and-health/environmental-health-policy-institute/

DCIS - Radiation . . . Things I'd tell a sister

If I had one, and she needed breast radiation, I'd tell her. 

That bench/table you'll lie on is not a sofa.  It is hard.  Don't wear any pants with lumpy back pockets.  And skip the cowgirl belt with leather trim and heavy studs.  

You'll be taking off all clothes above the waist every day, so wear something that buttons down the front, or something that you can take off gently and easily. 

Since you're having external beam radiation, get the ointment at the start!  You may never itch.  But don't wait to find out at 3 a.m. after a few weeks.   

This whole DCIS process can be overwhelming.  I went home with the hospital's locker key twice and did an assortment of other dumb things.

ASK questions.  Do not be shy.

At first there's a "simulation day" when they decide the exact positions for your radiation, They need to make three tiny permanent marks to help place the radiation. If you don't like them, you won't like getting a rose put on your left hip.

You'll be lying with your arms raised above breast level, on something firm.  Since you (my imaginary sister) have tendinitis and arthritis, you may be "uncomfortable."  This is hospital code for "your arms, shoulder, and neck may hurt a lot on some days."  For instance, on the simulation day and on the first day of the Boost (when they concentrate on one area.)  Those days you'll be in position longer.  Take Tylenol or ask your doctor what you can take for pain and still drive home without endangering deer, road signs, or motorcycles.  

Read the directions about staying out of the sun (a tanning booth is sun), getting plenty of liquids, and getting as much rest as you need. This is no time to change the oil in your car or attempt to bathe Fang.

My personal advice:  do not go home on the first day without an emergency after-hours number for your radiation oncologist or the cancer center.  If there are special phone instructions, like for a pager, get them to write down the special instructions.  No, I don't think you'll need it.  Get it anyway.

Buy a very soft "un-bra" to wear to bed.  Burn your underwires. Really.

Stay away from people who have colds and whatever.   

Treat yourself very nicely.

DCIS AFTER RADIATION . . . The moment of truth

The Cancer Center Patient Feedback form arrived late yesterday, and I've been obsessing about it.  

It's hard to say what I want to say in a way that could spark improvement.  I can't change someone else's personality.  All I can do is tell what I needed and got or didn't get.  And praise the people who made the month so much better.  And remember what is "small stuff."

I want to say:

I felt I had no choice but to be shut in a room with the social worker for endless questions.  It was not helpful.

I was so overwhelmed on the day I met the doctor.   One of the many pamphlets they gave me said that she would assess my medical condition, but I don't remember that.  Does she know that I have arthritis and tendinitis?

Reading the information on the paper I signed was not enough.   

After I said yes, I was swept into a room that I thought was the treatment room - many people and too much information. I found out the next day it was the Simulation room.  No one seemed aware that I didn't get all the information they were giving. I didn't realize how overwhelmed I was.  

One day, I was so worried about possible skin effects that I asked to see the doctor, and I met Dr. Kaiser.  He would make a good primary doctor - friendly, gave examples, and said if necessary I could use the medicine I already use for other skin problems.  

It was never comfortable having the nurse standing there when I was talking with a doctor.  It's like telling a problem to your boss in front of other workers.

The only really bad day was the first day of the boost.  I wasn't prepared for it, and wish I'd been warned to take pain medicine, which I didn't really need on ordinary days, so didn't take.

I had no idea it would take so long, or that a different radiation therapist would be making more marks on me, putting stickers on me, again and again.  And more x-rays to be sure they were aiming at the "tumor" area.  Before they were finished, the pain from holding my arm up was so terrible in my arm, shoulder, and neck!  I was shaking when I got dressed and afraid I might vomit.  After a quick trip for groceries, I was still shaking. 

Through the whole month, two particular radiology therapists were incredibly kind, gentle, and friendly.  They brought me out of the radiation session and into the real daily, happy, funny world.  I don't know what I would have done without them.

No, I may not say all that on the form, but most of it, maybe I should.

DCIS - AFTER RADIATION . . . Questions and impatience.

It's easy to forget that DCIS doesn't excuse us from life's little aches and illnesses.  We've all had some sort of  "cold" this week, with scary coughs.  My inherited sinus problem went crazy, and the results were not pretty. Luckily, a vaporizer helped a lot, after I finally learned how to work it.  And I walked outside for extra humidity.  But I still feel dehydrated, and I know it's not healthy.

In the shower, I still see black marks on me--leftover guidance marks for radiation.  A nurse or someone told me not to scrub the marks and stickers!  As if I would scrub a breast that was red and tender?  Also, my lumpectomy scar is still red almost two weeks after the Boost.  The rest of my color scheme: pink on the side near the breastbone, pale on the side of the Boost. Why?  

Generic Benadryl helped me to sleep during the cold, as  always. When it wore off this morning, I started to cough again.  I worry about giving up this medicine that interferes with Tamoxifen, and yet I still have no idea if Tamoxifen will be prescribed!

Friday is my appointment with the surgeon; always glad to see him.  And then another week before I can see the medical oncologist and get some answers.  "Get some answers" seems to be the motto of the DCIS world.  

I just want the day when I feel I can "start my life."  Or at least go back to it.

LOOKING FOR THE CAUSE! Breathing it? Sleeping on it?

This morning I ran into a barrage of article on fire retardants and thyroid cancer.  Since a number of my friends have had thyroid issues, and I take levothyroxine, I dove into the topic headfirst.

Memories of the new sofa bed I got in 2011 and used for less than a month at least helped me to notice these articles.  After all, someone somewhere is sleeping on it now, I'm sure.

Then there were mentions of fire retardants on foam, and I certainly slept on foam pillows at times.  Not to mention a year on a memory foam mattress!

I found several mentions on line of the hearings on the Chemical Safety Improvement Act, (CSIA)  bit didn't read all the way to the bottom line on what's next.  

Just sent an email to Breast Cancer Action, San Francisco, to ask for any updates since fall of 2013.

You can send them an email, too.  After all, many of us are wearing some of the same clothes as before we were diagnosed with DCIS or other breast cancer.  And napping on the same fire retardant sofa.

And buying things that have gone around the California laws, for better or for worse.  Like kitchen cabinet companies who order cabinets built outside CA.  And we still wear rayon, and love it, from garment  companies who buy from rayon manufacturers, for better or for worse.

Write to somebody.  Call some politician.  Call a doctor and see if he's up to date on harmful chemicals.  Tell me when you do.

WHAT IF? . . . A rant

"Stay hydrated"

What if everyone with cancer dared to turn on the faucet and get a drink without worrying about the water giving them an additional cancer?

What if my alma mater would tell us precisely what they plan to do about water quality?

"Avoid the sun"

What if every women (and man) receiving radiation (and for a time afterward) had a shady, safe place to sit and rest and read?  And play with the kids?  

What if every woman in "under-served areas" had a safe, shady place to wait for the bus?  


"Rest when you need to"

What if all the employed cancer patients had access to a "nap room" and a boss who thought it was a good idea?

What if cancer patients and "survivors" had an alternate way to get to work instead of an hour and a half commute?


"Gambling is illegal in this state"

What if breast cancer patients and "survivors" didn't have to play the odds of recurrence versus treatment with possible gruesome side effect?  Yes, I know the odds of the worst side effects are small.  But someone will draw the short straw.


"One in eight"

What if we can do something to make the odds more like the odds of getting polio?  

What if we each discussed this with political candidates?

AFTER RADIATION - Good news about those pills

Just received email from a health professional woman who also writes about breast cancer life and survival.  She assured me that the worst thing most women experience with Tamoxifen is remembering to take it!  Most encouraging thing I've been told so far.

Now my appointment with the medical oncologist is back to Feb 6.  Since I'm stuck at home with this sore throat/cough, I have dug around for more specifics on Tamoxifen side effects.

Even the National Cancer Institute (NCI) can baffle me.  They list cataracts as a side effect, but their one source didn't find any ' vision threatening ' effects in their study, which is not brand new.  The material did say women should have a baseline eye exam

One most discouraging thing from NCI is that diphenhydramine can slow or harm the effects of Tamoxifen.  This will be a problem for me, since I've taken it every night since the spine fusion to sleep soundly.

A lot of the NCI things I read today reference something called pub/med from the

US National Library of MedicineNational Institutes of Health   if  you want to venture in there.

BEFORE MY MEDICAL ONCOLOGIST VISIT

I need to pack up all my meds and my list of meds including things I too in the past

Anyway, I have some new things to print and take with me,  to get, hopefully, some answers.

I need to translate some of my notes to real questions.

AT THE VISIT

And I need to write down what he says!

Just don't let me spend too much time visiting with him and abandon my questions and fears 

CONFESSION

My research skills could use improvement.

POST - RADIATION NEXT STEP . . . My list for medical oncologist Part 1

Yesterday, I tried again to get an earlier appointment than February for the medical oncologist.  They told me to come in this morning.  Last night, coughing and sore throat started, bad enough so that I dreamed about it.  So I cancelled.

But I had already gone through my questions and worries lists in my computer.

My current  list includes:

Cataracts - already have one, and don't want any more.  How to avoid? Common?
Fuzzy thinking  -  how common?
Tamoxifen side effects - how to avoid
Tamoxifen vs Arimidex  The more I learn about Arimidex, the more I don't want it
Raloxifene  
To soy or not to soy   I suspect it will be Not to soy
Any hope for new drugs this year?

None of the research I've found so far says what percentage of women on Tamoxifen get cataracts or fuzzy thinking or any of the other side effects.  The only percentage I've found is that around 1% will get uterine cancer.

At this point, I've asked for my February 6 appointment to be reinstated.

I want some good news from this doctor, and I want good news for you.

AFTER LUMPECTOMY, HOPE! . . . Today Breast Cancer 2 forecast video

Today, medpage Hot topics:  Breast Cancer 2 video on expectations for 2014.  Three doctors speak on improvements in radiation treatment, and other developments that may give you hope.  New terms for me, like "molecular treatments."  Just search medpage.

Watching and listening, I got the good feeling that the radiation I received may have been a new and improved regimen.

Meanwhile, I realize I've been putting off taking care of things I know to do for the rest of my body.  Need to go to the Y and see what they have; need to go to the bookstore and look for Strong Women Stay Young; need to take care of m;y feet..

And if I get an appointment sooner with the medical oncologist, I need to power up on organizing my list of questions for him.   My excuse for both these issues is radiation fatigue, which comes and goes.  But . . . priorities.

AFTER RADIATION: THROUGH DCIS EYES

Have at least one question for the radiation oncologist, about why I'm not pink now in the area I thought the Boost was targeting.  I feel awkward about asking her questions now that I've signed the release form.

Talking with a friend who has trouble with her adjuvant therapy made me very hesitant to try again for a Literacy Volunteers tutoring client.  Will the side effects make me feel like doing nothing?   It's still almost two and a half weeks before I see the medical oncologist and find out what he thinks and what medicine he advises me to take.

 And I still want and need to go to work.  Woke up hungry and too early, thinking about how to change my resume.  Preparing for a tutoring client can only be a help at a job.

One in Eight

I see contrasts between "survivors" who exercise and those who don't.  Commuting is certainly a factor - eating up as much of people's time here as in L.A.

In parking lots and in stores, I see women with parasols.  When I saw them before, the parasols seemed odd, unless the women appeared to be from a country where parasols were part of the stereotype.  Now I wonder how many of the women were having radiation and had to avoid the sun.

I'll step outside and see if it's too cold to walk outside while there are still shady places.

AFTER RADIATION . . . Scared enough to take care of myself?

It's late afternoon, and I'm waiting for the sun to get a little lower, so I can find some shade to walk in.  Didn't get out much today, due to digestion problems that show I'm not eating right. The five fruits and vegetables standard seems so simple until I look back over the last few days.  And not drinking enough water actually runs in my family!

The Sunrise Rounds post  BREAST CANCER PATIENTS REST IN PEACE is still standing up on the chest of drawers.  I know which exercises help with everything specific, but that article gives me a reason to use enough exercise against cancer!  Dr. Salwitz admits that scientists are not sure how exercise works.  But he uses the phrase:  will I live or will I die?  

One friend credits her good-enough experience with cancer treatment to the fact that she had already been doing water aerobics for years.  (And still does.)
   
I did all my on-the-bed exercises again this morning, starting with the leg moves.  Some of the arm and shoulder and neck moves have multiple benefits, and none of them are too strenuous for my healing lumpectomy surgery.  

When it's freezing out, I have these mini-dumbbells and ankle weights to give me a workout, but the spine and other parts of me (and how my jeans fit) also depend on plenty of walking.  I still haven't gone up to the Y to see what exercise equipment they have for those cold, cold days.  Or hot, hot days.

I'm going to start writing in my purse calendar what days I ate 5 fruits and veggies, and what days I did which exercises.

Just call it a lifesaver reality check.

RADIATION AND AFTER . . . Careless reading and Patient information?

For a couple of days, I was worried about the sun.  But that worry was partly from the written discharge instructions, not just my long-term reasons to stay in the shade.

This morning, I picked up my folder full of booklets from the cancer center, and also the discharge sheet.  The pamphlets they gave me  are from the American Association of Radiation Oncology.

Reading again, I discovered that one of those pamphlets is where, a couple of weeks ago, I saw this:

"If you undergo external beam radiation therapy, you will not be radioactive after treatment  ends because the radiation does not stay in your body."

This sent me back to the discharge sheet.  Reading carefully instead of skimming, I found this:

"Radiation continues to work for several weeks after your last treatment, therefore the effects will continue for two to four weeks."

How does it work if it's not in our bodies?  

This pamphlet comes from the hospital, and like other hospital forms, I have no idea who wrote it.  And I don't know if the nurse read it to me verbatim.

The social worker had also given me papers to read.  One mentioned that in reacting to the stress,  I might notice that I find it hard to concentrate.  If I had been working six or eight hours a day and commuting, it would have taken me a lot longer to wade through all this printed information, and I still might have become confused.

The stress begins at the diagnosis, and some of us have felt overwhelmed ever since.

RADIATION AND AFTER . . . Danger in a bottle

For some of us, keeping track of our medicines, lotions, and potions is practically a second career.  

Replacing them is somewhat complicated by the lighting in my usual drugstore, which would be perfect for an intimate restaurant where lovers rendezvous.  For reading labels, useless.  

This week  I bought a big bottle of Eucerin lotion that's not the "original" version I wanted.  I've trusted this company for my sunscreen and my everyday lotion for over a year.  So I didn't read the entire back of the bottle.

 This morning at home, I read the very fine print, found a Sunburn warning, and learned that this Intensive Repair version has ALPHA HYDROXY ACID, AHA, which can make us more vulnerable to the sun!  

Since I just finished radiation this week, (we who've been radiated are still  supposed to avoid the sun and use sunscreen) I can't even use this lotion on the bottoms of my feet!  After an annoyed search, I found the receipt.  Luckily, CVS will take it back.  

Then I have to replace it, and concentrate on exercise and hydrating!  

I wish you all better health and comforting moments.

 

LUMPECTOMY - THE SEQUEL . . . What the nurse really said

The nurse read aloud the  form I signed after the last treatment.  That was way too much spoken information for me to memorize.

The form says:

"Radiation continues to work for several weeks after your last treatment, therefore the effects will continue for approximately 2-4 weeks."  Luckily I haven't made plans for an outdoor art fair or a hike.

"Always use a sunblock agent with an SPF of at least 15, especially if you will be in the sun for 30 minutes or longer."   I also have a Eucerin with mineral sunblock agent, but I was hesitant to use it on the treated breast, so I've just avoided the sun so far.  

Since  I once several years ago burned right through a tee shirt, I will use this sunblock.

"Avoid extremes in temperature in the treated area (heating pads, hot tubs, ice bags.)"  

At the end, it encourages calling the nurse or Dr. Sands with questions, and mentions continuing my care with Dr. Hubbard, the surgeon.  I hope he continues with me as long as I feel I need to see him.

Has my energy already started to come back? Or is it just awareness of how much I haven't done that needs doing, especially for the health of the rest of me?

LUMPECTOMY - THE SEQUEL . . . Amazing news and back into the unknown

Yesterday I got a hug from one of my two favorite radiation therapists.  A month of friendly care from those two kind people.  And back into the unknown.  

Then the nurse handed me a big surprise:  For at least several days, radiation will still be in my body!  Along with the redness and tenderness, it will soon fade away.  Hopefully, so will the fatigue.  And maybe that little sticker on my very tender nipple will just fall off in the shower so I don't have to peel it off.  

There is a bell to ring at the end of radiation and a certificate of completion (which almost made me laugh - all I did was lie there.)  I didn't even get to celebrate with sugary coffee because the traffic was clogged beyond hope.

When the remaining radiation is gone, nothing medical will be fighting any abnormal cells that might be lurking until or unless I start adjuvant medicine.  So, my break from the parade of new doctors has to be short.  

I do want to meet the radiation oncologist before my appointment with the surgeon at the end of the month.  The surgeon has been my constant figure in this journey, almost since the beginning.  That's been reassuring in some way.  

My list of questions for the medical oncologist is not complete, not organized, maybe not even necessary.  At the top of the list is rumors of fuzzy thinking.  I can't, can't afford that.

From what I read, Tamoxifen is like going to the moon:  probable big rewards and enough danger to make you think twice before suiting up.

LUMPECTOMY- THE SEQUEL . . . Last day of radiation, but it ain't over 'til

Saw the radiation oncologist yesterday.  First the nurse took my temp and BP.  She told me the doctor would look at my breast skin, and that she would look at the same time.  I wanted the nurse to go ahead and look and then go away.   She will be putting me through some paper work today for release.  And probably something about skin care.

Dr. Sands congratulated me, which seemed strange.  She said she would see me again -- was it six months or a year?  Then every year.   Periodic visits seem typical, from what I've read - I have no idea why.  She did ask who would be following up with me, and I told her I was sure I'd be seeing a lot of the medical oncologist.  She agreed.

She asked me who the medical oncologist would be.  I couldn't remember his name.  Then she told me to call him and make an appointment.  (You know being told to do what I definitely know to do pushes my resentment button.)    

I have always been very uncomfortable having the nurse standing there during my talks with the doctor.  I am reluctant to tell the doctor anything I don't like or wish had been done differently with the nurse listening.  Feels like confronting your boss in front of other employees.

What is the etiquette concerning my special thanks to the two radiation therapists who have made my visits actually happy?  I guess I'll have to send them a note in the mail, something that I always procrastinate about.   I am taking cookies to the center this afternoon.

 Will I get a patient feedback questionnaire?   Will it go to the Center manager, who is also a radiation therapist?   I can't give a really honest feedback unless it is to someone outside the unit.

I think I need a break to feel what my friend calls "normal" before I start with the medical oncologist. And the Tamoxifen Talk. Of course I hope I really do like him.  I expect five to seven years more of treatment with heavy side effects.

There is no 'til it's over with this disease 'til there's a cure.

LUMPECTOMY - THE SEQUEL . . . Are you using this weapon?

 More than a decade ago, a doctor told me that there is a region in the brain that responds to live music.  

There are many who believe that live music is healing.  Somewhere in the archives of the L.A. Times is an article from years ago about a woman who rolled her harp down the sidewalk to Children's Hospital to play for the little ones.  And there was a piano in the  Acute Rehab unit at Huntington Hospital.  People would come in at noon to play for us.  The quality was variable, but I still believed it was healing.

Unfortunately, sidewalk musicians are very rare here.  So, my main live music source is my daughter's practicing the song she will teach to the children in her class.  She has learned that one instrument, the recorder, can make a sound harmful to very young ears.  So, instead, she plays a very simple flute.  

Music I like is hard to find here on the car radio.  But when certain favorites do come on, I definitely sing along.  So maybe my own singing is healing me.  And remember that shaman story, and the question:  How long has it been since you've sung?  (Or words to that effect.)

Of course there's evidence that recorded music is healing, too.  At least we know it brings healthy states like lower blood pressure and relaxation.  My roommate last year gave me some great earbuds for laptop music.  Why don't I use them more?  And even sing along?

What've we got to lose?

LUMPECTOMY - THE SEQUEL . . . the position aches, pains, the burn

Sunday

Day 3 of the boost is coming tomorrow.   I don't really know how much of the pain I felt Thursday was arthritis, how much was tension, and how much was muscle problem.  I just know it still hurt Friday, though that treatment was very short.

Today it hurts to massage the muscles behind my left shoulder.  I spent a lot of this morning doing all my reclining exercises - in other words, on the bed, then massaged everything I could.

Then I read again my California doctor's neck and shoulder exercises.  I still need to massage my arms as closely as I can to the way my California PT did it.  Closest thing I have to his massage oil is jojoba oil from TJs, but I've been using Traumeel (from Germany).  Frankly, it didn't do enough for pain on the first day of the boost.

I still have no itching in the radiation area, thank Heaven.  My nipple hurts, and my incision sometimes hurts for a minute, more than it did right after the lumpectomy.  However, when I read that some people have radiation for 10 weeks, and that some women worked with blisters on their breasts, I know I have a lot to be grateful for.  The big tube of Aquaphor is always at hand. The other oncologist did tell me not to use a thick coat lot of lotion right before the actual treatment.   So, at that time, I use regular Eucerin sparingly.

The un-bra I wear to bed is Basics XL.  The microscopic print also says Bravado!  It's 3/4 cotton and I think it would be great to wear on those amazingly hot days here in summer.

Also, if no one told you, we're supposed to stay out of the sun.   Perfect excuse to stay in and exercise seated with ankle weights, then 2-pound arm weights.

I wish you more health,

LUMPECTOMY - THE SEQUEL . . . The bottom line

Yesterday, Friday, was better.  My arm is not totally better from yesterday, but today, my two favorite radiation therapists were handling the treatment.  They have both been wonderful at bringing my head back to the joys of the real world and out of the strange world of the radiation room.

When I read the NCO site slowly and stop to think, the reality hits hard.   Tamoxifen does not kill cancer, it just keeps hormones from feeding abnormal cells.  Surgery does not kill cancer; it just removes cancer cells modern medicine has found.  Radiation is the deadly weapon in my arsenal.

The rest of the fight after radiation, and from now on, will be up to me.  The personal power in my arsenal is:

Reading The Immune Power Personality, often, and acting on the findings there.

Reading  Rest In Peace.  (You know--that one about exercise.) And I'll exercise.

Reading the material on new developments.  Morning Rounds said today that women now have their final illness for five years, on average.  Not a good way to go.  I hope we're all aided soon by some better discoveries.

Asking  what pharmaceutical companies and our nation are doing that actually works.

Saying my prayers.

And I will ask the forbidden question:  wouldn't anyone rather die of a heart attack than cancer?

LUMPECTOMY - THE SEQUEL . . . During the first Boost session

Thursday was a painful session.  Somehow the doctor had neglected to tell me that today's session would be longer and I would not be allowed to move the whole time.  It certainly was longer.  For someone with arthritis and tendinitis, it was like lying on the sidewalk for a half hour with arms above my shoulders in awkward positions.  My left arm and neck were in pain, despite my high threshold.

If I had known I would not be moving for so long, I would have taken two Tylenol at home first, loaded my arms and neck with pain ointment, and insisted on enough time before they started to be sure my arms would be tolerably comfortable.

This first session involved taking x-rays to mark the three angles of radiation aimed at the site of the surgery.  Take an x-ray; get it approved by the doctor, do the treatment, and so on.  Many new marks on my skin.  I do appreciate the extreme attention to accuracy.

When I got back to the changing room, I felt shaky and a bit nauseous.  Just sat in the changing room for awhile; then in the waiting room.

Then I had to go to the market.  As I was leaving there, one of my favorite radiation therapists called to remind me that tomorrow's appointment is at noon.  He listened to a little of my griping (for which I apologized) and assured me that tomorrow would not take quite so long.  I hope that's how it will be.



This morning, Sunrise Rounds post was a wonderful story about how natural it is to fear recurrence, and how we must, must work with a doctor on a surveillance plan to stay current of how we're keeping healthy.

LUMPECTOMY - THE SEQUEL . . . Boost day 1 and more on research

The Boost, concentrated radiation on the site where abnormal cells were discovered, starts today.  I'm a little nervous about my skin.  However, the doctor did say they don't use extra radiation.

Yesterday I mentioned that my lumpectomy scar is now red.  It wasn't red even when I took off the compression bandage weeks ago.  The radiation  therapist said some people's scars even become more smooth and even during radiation.  Wonder why?


More from yesterday on wandering in the research forest

I need to :
Stick with information that has actually been published in a medical journal I've heard of
Check later on information that is only from a paper read at a conference
Prefer information from an oncologist
Be sure all online information has been peer-reviewed by an MD or two
Look for information on leading hospital sites like Sloan Kettering, Mayo Clinic, etc.
Make sure the information I see is dated
Decide if I think it's been outdated by something reputable or is still controversial
Ignore sites that are selling something



PS  The quilt in the lobby of the Cancer Center was made by children - each one taking a square.  And the bench where some people wait for their cars or their ride is also made by kids - one ceramic tile at a time.  Most of these artists put their names on their squares.  I look at their names and wonder how anyone in government could possibly stop fighting for cancer prevention and cure.

LUMPECTOMY - THE SEQUEL . . . Dangerous words plus post-lumpectomy exercise

As usual, I was mixed up on which radiation day was Monday.   Anyway, next Tuesday will be day 20, the last day of radiation and the last day of the Boost.  Everyone at the Cancer Center has been so nice.  It's pleasant to go there.

I didn't have the clothes I needed for a long walk in this cold weather yesterday.  So after radiation, I did a good set of seated exercises with my ankle weights.  I learned all of these movements from nurses and physical therapists before and after the spine fusion.  (Also walked in the Mall, which wasn't taught by nurses.)

I'm only a few weeks into healing from the lumpectomy.  This reality makes me select only upper body work that is baby-gentle on the right arm and all the tissues near the affected right breast.  Secretly, I feel the most healing exercise is petting the cat.

The other day Sunrise Rounds told a very sad story about an oncologist whose reputation was hard-hit by completely wrong information circulated at a funeral.  Apparently some people did not have the latest information on the patient's disease.  A government ruling kept the doctor from telling the actual cause of her death.

I personally have received some third-hand information that I believe is incorrect about a certain medicine, since I've checked it against the description by the National Cancer Institute.  More on the Research Forest tomorrow.

Please leave a comment if you want the description of yesterday's exercises.

LUMPECTOMY - THE SEQUEL . . . The boost plus breast cancer forecast video

Monday  Day 15  Saw the radiation oncologist.  She says my skin is doing well.   

On the boost: she mentioned it's coming soon (as if I hadn't been counting) and told me they won't use more radiation; it is just concentrated on the original trouble spot.


I enjoyed the MedPageToday 2014 Breast Cancer 1 video:  

Lisa Carey, MD, of the University of North Carolina at Chapel Hill, really impressed me with her statement on Breast Cancer 2014, Breast Cancer 1.  She touched on something I've wondered about -- what kinds of cells are in breast cancer, saying that some breast cancer cells resemble other types of cancer cells more than they resemble other breast cancer cells.  

I was delighted with her clear way of speaking to all of us--no medspeak. 

There will be a Breast Cancer 2 video near the end of the month.  I went to MedPage Today, More Medical News, and scrolled down to Breast Cancer 2014.  

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

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

Today is radiation day 14.  

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

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

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

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

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

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

LUMPECTOMY AND andother retraction

No excuses:  This is day 14.

LUMPECTOMY - THE SEQUEL . . . Stories old and new

If I've told part of this before, please forgive me.  The "dancing doctor's" brave video has opened Pandora's box of medical memories and things to be thankful for.

In the 70s, in a then-small California city, my doctor got the idea that there might or might not be a lump in my right breast.   The next thing I remember is sitting in a hard chair in the middle of a large, chilly room, naked from the waist up.  The surgeon was in the room with me; so were a number of male medical students or interns or whoever. If there was a female nurse around, I don't remember her at all.

 I was fairly miserable during the long time it took for almost everyone to palpate my breast and discuss my plight, if there even was a plight.  All that poking and puzzling; no findings.

Although I don't know the standard of care for breast diagnosis in the 70s, the surgeon decided on a combination surgical biopsy and possible mammography method that I now understand had been developed at the beginning of the century at Mayo Clinic.

In this approach, the patient was put under sedation.  The suspicious area was excised and sent to pathology for frozen section -i.e. slicing it up paper thin.  If the pathologists found malignancy, the breast and possibly near-by lymph nodes were removed.  Finally the patient would wake to find out if she still had her breast.

I must have put myself into a sort of pre-surgery denial fog.  My husband, who later became my ex-husband, made a brief, awkward attempt to talk about outcomes.  I was not at all clear on how much to tell my little, grade-school age daughters, and still don't remember what I did tell them.

Finally, I put on my red blouse and was driven off to the hospital.  I should probably inject here that I didn't really like the surgeon.  In those days, women made remarks like "He's not much for bedside manner, but he's good."  Later, he became a client of mine, and we still did not become friends.

When I finally woke, I believe for some reason one of my in-laws was in the room--is that possible?   (We were not huggy in-laws.)  A nurse stuck her head in, said "benign," and vanished.  Someone asked me what I wanted to eat.  There was no sign of the surgeon.   By the time my green beans arrived, I was still too groggy eat them, and went back to sleep instead of enjoying the fact that my husband was in the room.

After so many hours under the anesthesia of the day, I was a little dopey for a while.  Even weeks later I would suddenly get tired when we went for a walk.  Were there pain pills?  How long did I stay in the hospital?  There must have been pain, since the nipple had been removed for the exploration.   The good news is that the scar has been almost unnoticeable.

Just a very few years ago, one of my daughters told me she and her sister had been sure I would die in the hospital.  I wonder if anyone tried to comfort them when I wasn't around.

***

Through the multi-step DCIS diagnosis, the old scar on that nipple wore a cute little sticker like a wreath, to keep it from looking like a problem on film.

The good news:  I have a surgeon I like, who is as kind and caring as the best family doctor, and who also did a great job removing the affected area for analysis. I am different now than in the 70s; I would not have let him do the procedure if I hadn't trusted and liked him.  

And lumpectomy let me avoid, as many women can now, the long and dangerous surgery to remove a whole breast.

LUMPECTOMY - THE SEQUEL . . . What those X-rays are for

A specialist privately answered my question about the reason for a weekly X-ray before my radiation treatment:  the breast is not always the same size, especially if it swelled after surgery or during treatment, and is no longer swollen, or for various other reasons.  {I've noticed week-to-week size changes myself through the years by the way a bra fits} These X-rays, called port films, let the radiologist decide if the marks on us are still located at the exact spot that needs radiation.  If the marks are no longer accurate, they can be replaced.

This comforted and reassured me. for two reasons:  she mentioned that the amount of radiation in the films is very small.  And, the fact they take them makes it clear that the radiation really is aimed as accurately as I've been told.  This protects other areas as much as possible, including my lungs.

LUMPECTOMY - THE SEQUEL . . . Famous decisions--the other side of the story

I've read plenty about a surgeon and a film superstar and their double mastectomies. I know the surgeon had been diagnosed with breast cancer; we've all heard the superstar's reason.    I don't mean to downplay what they've gone through, but I also knew they could expect world-class care.  Now I read that their stories have started a clamor for voluntary double mastectomies.

I was thinking tonite (Thursday) about the dangers of what they have gone through, as well as the benefits.

And I have often thought before about why lumpectomy is simply called "breast preservation" or similar names.  To me, lumpectomy, when it's the standard of care, is the way to avoid an incredible amount of danger of infection, not to mention pain, dangers of major surgery, and lengthy, difficult convalescence.   I've shuddered at the stories:  frantic daughters of mastectomy patients tracking down nurses, and insisting, "Give Mom her shot.  Now!"   I'm glad I've been spared for now from being that suffering mom.

I had nothing to say with any authority about this question, so took a break, went to KevinMD, and lucked into an article by

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.  

I clicked The Crab Diaries, and found her cautions on that very subject - possible reasons not to choose a double mastectomy and when or why not.  She is a wonderful storyteller and you may want to read.that January 2 post, Primum non Nocere..

My suspicions are confirmed, and there are even more reasons to think very, very carefully about voluntary double mastectomy for yourself or someone you love.

LUMPECTOMY - THE SEQUEL . . . Day 12 and brain fog

I really have been making a lot of mistakes since the diagnosis.   Some of them with time-consuming results.

What is really important for me now is:  thinking back to before the diagnosis and even before the callback for additional mammogram films.  Some of my mistakes that seem big actually started before the latest mammograms.  So, the confusion is not from DCIS.  For instance, an email gift wasn't received because I've always had the wrong email address in my contacts list.

Also, I told a friend (who also has DCIS) that I feel a little depressed some days.  She reminded me that this disease, and anything that starts with the word cancer, is stressful and can be overwhelming.  Add this to moving twice in two years - once to a different state- and overwhelm is practically a given.

I also need to remember the old joke, "After a certain age, mood swings don't count as exercise."

She talked with me awhile, and her diagnosis was that I'm having a "Human Attack."  She advised being nice to myself.

Also, I went into the building the other day for my radiation appointment, and in the lobby was a man a lot younger than I am, in a wheelchair, accompanied by his family.  And while in the reception room, I heard someone say to a patient, "So you'll go to chemo after radiation today?"   I need to be grateful every day that chemo is not on my To Do list.  And be kind to people who may be doing both.

What do you do when a depression elbows its way into your day?


PS Breast Cancer Action SF is having a survey on what members think the group should tackle for the new 5-Year plan.

LUMPECTOMY - THE SEQUEL . . . Day 11, skin and questions

Monday, was the halfway point of the 20 treatments/4 weeks, and I didn't even notice.

Today, woke with the worst headache in a long time; but last night and today had energy for organiziing and exercises.  The breast is pink but so far doesn't look sunburnt.  Once in a while it hurts inside for a few minutes - I wonder if this cold spell could have something to do with it?

Secret thoughts:  Maybe having Christmas and New Year's off from treatment is a benefit.  Daring to wonder if a day off in the middle of each week could be beneficial?  Not daring to ask anyone.

Yesterday, Tuesday, they took an X-ray before the treatment.  They've done this before and told me they do it periodically.  Of course my first thought was:  More juice going into me.  More rays.  I need to ask what they learn from the X-rays.

Energy?  Fatigue?  I'm not sure how much of going back to sleep in the mornings is the holiday season and many changes in routine, or the radiation, or laziness. . .

I wish more health and healing for all of us this year - inside and out!