LUMPECTOMY- THE SEQUEL . . . How was your visit? Lousy?

In the entry to the Cancer Center is a poster or two, illustrated to resemble an oversize Patient Satisfaction questionnaire. I've already had several since the diagnosis.

If you're like me, often the questions don't touch the way you feel. Like the fear when one of your meds has disappeared from the electronic meds integration system that relief people can't operate.  I don't recall a question about the atmosphere or the lack of windows.   Or the equipment. Or the room arrangement that keeps me from seeing a seated visitor.  Or you name it.

And from what I read on line, administrations may use my answers to give lower evaluations to  caregivers and staff. So, when I get a questionnaire that demands I fill in every circle next to irrelevant questions, I know a machine will be reading it!  And someone will get the blame, maybe someone who had nothing to do with the problem.

A machine can't read the comments section, so does it go unread on that type questionnaire? I can write to the administration or even the board, or a website and ask for this type to be discontinued.   If I suspect the machine, I can staple on a paper with my comments.

And also, I can call the patient advocate, if that institution has one.  And I can tell my story on a website that takes comments from patients.

I can think about what caused something, like yelling in the corridor !  Is it just that they are understaffed and each one is far from the person who is asking a questions?  My answer can mention that in a popularly  priced, busy restaurant in CA, a manager with an earpiece solves problems by phoning someone or by taking action himself.  Just like the Secret Service.  Voila!  NO yelling.  I can mention that to a patient advocate or a hospital administrator.

I can start TODAY on that questionnaire I can't bear to fill out because most of my memories of that post-surgery rehab are not good.

But what I always must do is mention any caregiver who is kind, cheerful, and way above average - like the patient aide who brought me some floss threaders from home so I could clean my dental bridge!  Or is there a rule against giving a patient floss?

LUMPECTOMY - THE SEQUEL . . . Symptoms -- What hospitals could do

NOTE TO ARCHITECTS:
 Saturday night, too tired too take a shower or do a load of wash, I read some more of The Shape of Green, by Lance Hosey.

Here's a quote about patients and symptoms:

". . . at one Pennsylvania hospital, patients with garden views went home nearly a day earlier than those facing a brick wall. . . . So the quality of light, movement, and patterns must be important.  Yet. . . environmental psychologist Judith Heerwagen . . .and others show that even large photographs of natural scenes. . . lowering heart rate and blood pressure among stressed patients."

Also:  "A Carnegie Mellon study linked seated views of windows to a 20 percent drop in 'sick building syndrome' symptoms, including fatigue, neck and back pain, eye strain, headaches and irritability."   If only architects read these studies and persuaded hospitals to do the math.

In the Cancer Center radiation treatment room, as I mentioned recently, the overhead light shines through panels painted with flowers.   There is a good painting of nature in the waiting room, but I wasn't in there long enough to lower my blood pressure Friday.

 The exam rooms where we wait to see the doctors and hear the news are often where we need a nature view; but usually the only chairs have their backs to the window.   Then add the full-color drawings of horrible diseases, and feel your blood pressure soar.

Let's not pretend that hospitals and medical buildings can't remodel to make windows to healing views more possible.

You know I'm going to talk again and again about this.  And don't get me started about that garden accessible only through the administrator's office. . .

LUMPECTOMY - THE SEQUEL . . . . Radiation fatigue and skin

Yesterday, Saturday, started out great - busy, but with energy.  A kind person who has been through radiation gave me a present - the Aquaphor he used on his skin during radiation.  Talked with friends for quite a while.

Didn't go out for usual decaff.  By mid-afternoon, needed a nap. Slept hard enough to dream.  Climbed the stairs at the library, one of my no-skipping-this exercises, slowly.  But before I was through at the market, felt a little tired again.

Got the food into the house and made myself walk around the corner to the mailbox.  By then, the effort of taking a shower seemed like it would have to wait for morning.  What saved me??  Got my second wind earlier. Laundry's in and swishing.

SKIN

Since I wash my hair in the shower, shampoo irritation may (or may not) become a breast skin issue.   I went through the market's healthy living section and read every word of several shampoos' ingredients.  Settled on baby shampoo called Cocoon baby.  No phthalates, no parabens, no sulfates.  Also looked at one made by the company that makes my non-irritating leave-in hair conditioner.  I'll let you know how Cocoon baby works out.

In closing:  Just as not everyone has serious breast skin irritation, so everyone, including you, may not get fatigue.  Best wishes.

LUMPECTOMY - THE SEQUEL - More on day 9, blood pressure and psychology

Taking off my coat, I saw a small woman come into the waiting room.  She looked like a small and delicate very young woman.  It was my doctor.  We went into a treatment room with a new nurse.  The doctor even seemed more friendly and relaxed.  Is this me?  Finally getting comfortable with her?  Or just her after a few days off?

She asked about my energy.  I have taken a nap on some days.  Maybe I do need more rest to be less fidgety and finish the gift drawing and painting for my family.

My bp was 161  - too much rushing around.   I remember that passage in Bling that said after bp 145, all systems are definitely not Go, or words to that effect,  and some motor functions are disintegrating.
I don't to be driving when it's over 145

The nurse took it again and it was about 141.


Still haven't ordered an all cotton soft bra.

Good grief, another retraction:

I went back to the source of the discussion on tamoxifen, and it is a video transcript with a named woman, I have to assume that it is an actual doctor-patient discussion.  My apologies.

Note:  Apparently I really am more absent-minded since the diagnosis.

LUMPECTOMY - THE SEQUEL . . . Day 9 and meds and life

 .What I secretly wanted for Christmas was a headline in the New York Times saying that someone discovered a new long-term medicine to replace Tamoxifen and the others we have now. One with no side effects.   And that the new medicine would  be available as soon as I need it.  No bow necessary, no shiny wrapping needed.  No luck, but there are still a few days of Christmas.

No, I'm not dwelling on what happens after radiation, but the days and years ahead do sneak into my thoughts.  If you are concerned about the next step after radiation, you may want to look at this possibly hypothetical*  "discussion" between a doctor and a woman who wants to refuse Tamoxifen:

http://www.mdanderson.org/transcripts/icare_Tamoxifen.htm

Back to the present:
Yesterday, even the radiation therapist noticed the affected breast is a tiny bit pinker.  He asked me about itching.  Last night and this morning even I can see I'm pinker on the right side.

I was so busy yesterday drawing a couple gifts for the 12 days of Christmas, that I didn't get my late afternoon walk, so I did all my exercises with tiny 1 1/2 pound ankle weights and tiny 2-Pound dumbbells.  I even forgot to shower.

In between all of this, trying to reschedule my stomach medicine.  Taking it closer to supper didn't work.  I know I"m not the only one who has another health problem or three to deal with, right along with radiation.

I salute you who have so much to juggle today.

*  I don't have the details on whether this is an actual discussion
*  I apologize for the use of Arial in the publishes blog, it's hard to read, but can't fix

LUMPECTOMY - THE SEQUEL . . . Radiation Day 8, life

 After the second mammogram, the days flew:  meeting doctors, feeling rushed to have the steriotactic biopsy.  I guess they still fly by, but during the day, things seem to take a long time.

I actually looked up stereotactic:  it just means x-ray guided, image guided, or mammographically guided.  I haven't had breakfast, so I'm delighted that I can spell that.

 Because of the two holidays, radiation will actually go to the middle of January!  20 days.

Last week the radiation therapist said we're advised against wearing underwire bras.  I just told him I don't wear them.  I think what prompted him to mention it is that my soft bra slides around sometimes. When I looked in the mirror Monday, I saw that the band can be pressing on the softest lower edge of the breast.  Will a new bra be more elastic, and where it belongs?

Yesterday, I took one Christmas walk.  Spent most of the day drawing and talking to my younger daughter on the phone.  Forgot to exercise with my tiny weights.  Strong Women Stay Young says I can break up the workouts into 4 20-minute workouts per week.  I haven't hit four since I've been here.  Before the spine got so bad, (seems like another lifetime) I was doing floor work every morning.  Not possible here.

The list:

Put up a big sign based on the Breast Cancer Patients Rest in Peace post* that I hope you read.  Instead of walk for the cure, my new mantra is:  EXERCISE TO SAVE MYSELF!   Talk about deferred reward!  You can't just step on the scales to see if exercise is making you live longer.

 Order a new bra, same design, but is won't be older
Order a leisure bra just in case I have skin problems before the radiation is over.

* from Sunrise Rounds  http://sunriserounds.com

LUMPECTOMY - THE SEQUEL . . . Christmas Day

Nurses all over America are working this morning, missing the wonder, curiosity, and excitement of any children in the household.  Others, are patients in those hospitals.  Or patients at home, alone or with family.

I am worried about my leg pain and wondering about the rest of radiation and other therapy.

A friend sent a letter saying she had spent much of the year in hospital, on IVs, because of an infection that probably started in the hospital during or after surgery.  Now she is in need of more surgery.

Another friend is still taking a long term painful medicine for breast cancer.

The three of us are blessed to be home this Christmas.

But medical science still has much to do.

LUMPECTOMY - THE SEQUEL . . . Christmas eve and radiation

This morning, Tuesday:  my legs were still bothering me.   Got my walk in anyway, and wondered if I'll make five hours of exercise this week. . .

Noon:
The radiation therapists feel like friends now.  The woman therapist even remembered my plans for the holiday.

This week, my old tech editor gene came back to life and started me wondering what the parts of the radiation machine are called.  I can kind of tell by the sound now and by more or less room light on my closed eyes when the machine is moving back and forth over me.

Afterward, the therapists were more than willing to help me sit up the way I was taught after spine surgery, rolling on my side first.  We all wished each other Merry Christmas.

Back in town, traffic was lighter, even at the market.  Once out of the car, though, the leg nerves still jabbed me every little while.

My breast seemed less swollen and more normal this morning - who knows how this works.

LUMPECTOMY - THE SEQUEL . . . Radiation Day 6, Monday: Speaking up

Morning;
I read some old material on American College of Surgeons site about standard of care for breast cancer -- nothing new.

Couldn't find any helpful info on itch or pain medicine for breast.  What my friend had been given actually has itching as a side effect!  My oncologist put up a red flag in my mind last week by asking if I had any itching.

Got brave; called cancer center; told them I needed to see the on-duty radiological oncologist -  (My head still doesn't like the idea of  "oncologist" and I had to think before I typed it here.)

When I got there, I told the nurse that I need an emergency number for when they are closed.  She pointed out the microscopic number on my schedule.  When she gave me the number printed bigger, there were very specific instructions (which aren't on the schedule)  on how to leave a message.  I believe every patient should have a way to contact her oncologist in emergency after hours.

Dr. Kaiser was friendly and encouraging.  He had a real conversation with me as a person.  I told him about my unpredictable dermatitis including under my arms, and how badly it itches.  I need something on hand in case the breast itches a lot.

 He told me I could use the same cortisone on any breast itching that I use on my underarm dermatitis--that he has at times  prescribed cortisone for breast irritation.  Also gave examples of how often women's breast skin doesn't react to radiation the way it would to a beach sunburn.  Best of all he told me I may not get any itching.

I went off for my treatment armed with some samples of their lotion, which he said is like the Eucerin I'm already using.  I felt so much more secure.  

All afternoon I had trouble with my right leg again.  Thought that was all over --that I would have no more setbacks.  The way the spine physical therapists taught me to get up does not work on the very narrow treatment table -- the radiation therapists have to sort of half pull me up and support me.   All I can do is work consistently on my posture after I leave there.

LUMPECTOMY - THE SEQUEL . . . . A Warning and Recipe for Hope

Breast cancer patients rest in peace

   http://sunriserounds.com/

Posted by James Salwitz, MD on Jul 27, 2013 in Cancer Research, Life & Health

Go to his blog, above, click Cancer Care, then Cancer 101,and  up pops this post  that I had forgotten about.  (Although I had sworn not to forget it.)

Dr. Salwitz is more optimistic than some hospitals about DCIS in general in another post of his. But what this post prescribes offers my secret hope:  success with no side effects. 

This time I copied and printed the post and hung it on the wall in front of my laptop, where I sit too long and neglect my second walk or my reclining exercises, or my weights (boring).

   I have a perpetual note on my note pad that says:

5 hours a week 

(this figure from Mayo Clinic for cancer prevention) and I'm not up to 5 hours in spite of having a family member who walks at least that much.

Will I finally stick to it?  Do I dare not to?

LUMPECTOMY - THE SEQUEL . . . Time out to talk better medical care

I know this site can be hard to find, but I get it e-mailed to me:  http://www.pulsemagazine.org/stories332

Concierge Care  

Friday, 20 December 2013 | |

Deborah Pierce

***

Her story may or may not touch you.  Her new way of presenting it gives me inspiration to keep blogging and keep agitating.  I hope you can still access it when you get this post.

I believe in the fight for more people insured;  let us not forget to fight for medical care as good as we got from the best doctor of our lives.

And my heart goes out to you if you still deserve much better care than you have received so far.

LUMPECTOMY - THE SEQUEL . . . Day 5: the machine, communication

The treatment was okay today, with George Strait singing in the background.

I confess I've gotten a little curious about the machine (the big steel turtle overhead.)  The part that's toward me doesn't look quite so rough and industrial to me now.  There's what looks like a big square or rectangular lens or window in the center.  At each edge are some numbers or degrees that are probably not longitude and latitude, but I don't know enough of the science to know what they are.  One of the therapists one day had said only:  "That's where the radiation comes out."  That sums it up.

Afterward, they handed me off to the nurse, who said I would be talking to the doctor.  She said something about doing that periodically.  My pulse and  bp were fine, and so was my temperature.  I still get a bit dizzy when I sit up on the bench or table or whatever they call it.

And someone said the doc will be gone until Christmas, and another doctor will be there.

The doctor agreed that I am already a tiny bit pink.  She asked about itching.  I, and I told her I hated that word, and mentioned my dermatitis.  She said okay if I didn't want to talk about it, and started on another topic.  Why the devil didn't I ask her what to do if it itches over the weekend?  And why didn't I realize this before the office closed?  (All my research said the sunburn is usually after three weeks.  I'm not delighted to know it may be sooner.)

I need to go into sessions with her prepped with all key words that might come up and with questions I may want to ask her, although I really didn't expect the itch question today.  I'm still a bit overwhelmed by all of this sometimes

The doctor said I can use what lotion I want until they give me the special radiation treatment lotion. It's okay to use talc or cornstarch under the breast to keep perspiration from irritating.  That was about it.  We all wished each other a merry holiday.

In the evening, I talked to one of my friends who has been through this.  She said she had been given a prescription at the very beginning of radiation, and also named another medicine.  I was irritated that the doctor and nurse had given me nothing so far.  We talked for quite awhile about oncologists and how they talk with us and make suggestions (and when they don't.)  She convinced me not to obsess on it when I should be sleeping.

This morning I was still concerned about possible itching this weekend, so I looked up my friends' medicines on line.  Her prescription was for only burns--an antibacterial.  Her other medicine is for itching, and can sometimes be bought over the counter. It can, however, have side effects, and the internet has a lot of "ask your doctor first' phrases, so I will need to ask the nurse about interactions, etc.  Monday I need to see the nurse.  Or the available doctor.

Good thing I investigated now.  Don't want to be cross with everyone at the Cancer Center next week.

LUMPECTOMY - THE SEQUEL . . . News and Symptom talk

 MedPage today has an article about a non-hormonal drug for hot flashes that is apparently just Paxil renamed.  FDA and others worry about misinformation and danger.  Such news catches my eye of course, since my DCIS is hormone-dependent.

Now a review, if I get my calendar straight:

Lumpectomy was November 19.

Dec. 4 Two week follow up with surgeon, Dr. Hubbard.   My scar looks good.  Very little pain; just for an occasional minute or when trying to get to sleep.  Red dot at end of steri-strip - Doctor thinks it may be blood?

December 5  Steri strips off.  The red dot is fading.  Don't know what it is.  Horizontal scar visible. Vertical scar seems puckery.  I tend to refer to the scars as stitches, but the stitches are actually under the skin and will dissolve.

December 11  Met radiation oncologist, Dr. Sands, who said she likes to start radiation within 6 weeks of lumpectomy.  Got much information and statistics; agreed to radiation.  My deodorant stopped working, a sure sign that I'm more stressed than I know.  Got a gown, and was staged and scanned.

December 16  Day 1 of Radiation.  Deodorant stop working again.   Not quite like the video.  No pain except in my tendinitis upper arm from its position above the shoulder.  Breast not often sore.

December 18  Does the right breast look a little different?  Nipple color?  Any swelling?  Allow for my imagination and some poor lighting.  A spell of the images I get from migraine; turned off the light and moved away from the laptop.  I'm sure stress is a factor; the situation after diagnosis is often stressful.

December 20  Friday of week one. They put more marks on me yesterday; they're still a bit visible.  Fifteen more days of radiation after today.  Breast still sore occasionally.  As I told the nurse earlier, the pain seems to travel the route of the biopsy and then stop.  Is this my imagination?

Even though I research questions for the medical oncologist (and the future) I have to focus on the now.
And remember that mood swings don't count as exercise.

LUMPECTOMY -- THE SEQUEL Apology

In rechecking, I see I've misspelled Dr. David Spiegel's last name.  My sincere apologies.

LUMPECTOMY - THE SEQUEL . . . Yesterday and Building My Arsenal

Day three was entirely different from Day two.  Everyone was in a good mood, and things went smoothly, except I left my crime novel in the locker.  (No, I still don't like the machine so close to my face, so I still close my eyes.)  After ward, Therapist Roy told me that they even have a George Strait CD to play during treatment!

I did my silent war cry once, still not ferociously.

Research :  Okay, so radiation is my silent arsenal, and we're putting it to work.

 And research is supposedly part of our arsenal.  This brings us back to my worn and treasured book The Immune Power Personality, by Henry Dreher.  It features research over many years into who gets well.  The specifics of cellular immunity are over my head; what I care about is who got well in the studies.

One story, the work of Stanford psychiatrist David Speigel, focuses on certain kinds of supportive therapy on breast cancer patients.

My appointments have been changed to noon, so I have to hurry.  When I get home, I'm going to look up Speigel  or get a librarian to help me.

I just sneaked a quick  look on line for Dr. Speigel, and found a 2010 Newsweek article that said he was still studying effects of supportive-expressive group therapy on the survival of patients with metastatic breast cancer.  The article, however, was mostly an interview with him on keeping our new year's resolutions.

LUMPECTOMY - THE SEQUEL . . . Not peaches and cream

Day 2 wasn't that pleasant - I gave some feedback that wasn't welcome, and felt scolded, then hurried through the appointment.  Didn't see the doctor anywhere.   Must remember that what they think of me is none of my business.  And that this is good training for first days on my next job.

Maybe they want me to hop on the table as soon as I'm in the treatment room.  I still deal with the machine by closing my eyes--it looks so heavy overhead. 

The treatment was my decision.  This afternoon (it is now day 3) I will repeat my silent war cry as I enter the room, then get settled and relax into it.

***
To any of you who have invasive cancer or recurring DCIS:

 Today, Breast Cancer Action San Francisco e-mailed me a plea for donation: a letter called:  Why I Don't Use the Word Survivor.  It is from a woman who had heavy treatment for invasive cancer She included a very sobering quote.  Can't find the letter on their site, so despite my hesitations, I am going to repeat the Barbara Brenner quote here. In your research, reading about "survival times"  and recurrences, you may have secretly had this same thought:

She wrote: "The term survivor suggests to the world—wrongly—that breast cancer is curable. It is true, thank goodness, that many of us will live long enough to die of something else. But no one who has been diagnosed with invasive breast cancer can ever say truthfully that the cancer will not recur."

LUMPECTOMY, THE SEQUEL . . . Radiation Day 1; Part 2: Surprise!

 First stop was a long visit to the social worker -- did get some handouts on support groups, etc. Since I love to talk, it wasn't too uncomfortable.

Then one of the women I meet yesterday took me toward the dressing area, and introduced me to more treatment professionals and paraprofessionals.  When I got my gown, the doctor came in and took arm and asked me how I was feeling.  Two women took me past the control room to the treatment room.

 Surprise! retraction:  the room I was tattooed in last week is not the real treatment room!   And the "skinny donut machine" I described just apparently took the scan in the staging room.  (Sorry to have misled anyone.)

 The real radiation machine is big as photos you may have seen, and industrial looking.  They said the big circular end would be very close to me at times.  It was.  They had to move my arm a speck to make room for it. Kinda like a big steel turtle wanting to cuddle up with me for a nap.  I decided on the trusty old MRI technique and just closed my eyes.

When everyone went out to the control room, I mostly kept the eyes closed.  The machine moved around and buzzed at times.  Once a couple of people came in so quietly I almost didn't know they were there.   I could actually hear very soft music far in the background.  There didn't seem to be much actual radiation, just a lot of careful adjusting of angles and checking on the the dosage.  With my eyes closed, it wasn't really scary.  I only said my war cry once, and it was more calm than fierce.

Then to the nurse's room.  Nurse Mabel told me a lot of information, wrote down everyone's name next to their professional duties, and and demonstrated a little "walk up the wall" exercise to keep the breast soft and pliable.  She put all my information and my schedule in a folder, and showed me the way out.

Through the glass door into the exit hall, I could see a giant patch quilt with appliques that seem to suggest children's cancer experiences.  I am thankful to be one person who gets to walk away for the day.

LUMPECTOMY - THE SEQUEL . . . Radiation day 1

Murphy's Law of breast cancer radiation:  you will wake up in the morning with amazing itches, but won't dare wiggle or scratch during treatment.  So, of course, over the weekend my dermatitis has gone crazy.  (Since it's day 1, I'll be in "the position" with arms raised on the "pillow" for 30 minutes.) I should have practiced not scratching.  

So enjoy the day.  Luckily, my daughter made lovely peach cobbler with real oats, so I couldn't be grouchy at breakfast.

Making a list: 
Take allergy pill so I won't cough during treatment (I hope)
Allow time to drive to CVS in case the doctor finally gives me the tendinitis ointment RX
Finish lunch by 12
Take Tylenol no later than 1:00
Put ointment on arm before you go
Put dermatitis liquid on scalp before you go
Leave early in case road to cancer center is still blocked

Remember to ask for extra blankets in the treatment room.
Rehearse anti-cancer battle cry while changing into gown.
Say your prayers!

Give self a sinful treat after treatment.  Or two treats.  Or. . no, two is enough.

LUMPECTOMY FOR BEGINNERS and THE WAR CRY

Considering radiation, I had thought three weeks would be all I could take before I started brooding about what was going into me, and my future.  But when I said yes, the oncologist, Dr. Sands, said it would be four weeks.

Saturday morning, a wise friend who has had radiation talked with me again.  He said that as he lay there, he had said some things to the cancer cells, and they were not polite language.  He told me,  "This is war."  

That's exactly what my head should be doing from the first day:  Being consciously determined to fight abnormal cells.  Declaring war!

Agreeing to radiation is stockpiling silent weapons. But sometimes a warrior needs a war cry.  I'll bring mine.  I'll lie there . . .

Silently shouting.

LUMPECTOMY FOR BEGINNERS . . . what changes my attitude

Something occurred while talking to Becky a couple days ago:

If one woman in eight gets cancer, chances are the women with DCIS are included in that statistic, even if  our abnormality is only "the doorway."

When I am in the huge, crowded local market, waiting to thread through the crowd for the wine samples kiosk, there are probably one or two other women there at some stage of their recovery.

That woman pushing the cute, happy tyke in the stroller may have just heard a diagnosis far more scary than mine.  That elegant, grey-haired woman at the meat counter may still be getting annual checkups and hoping and wondering.

Yet they are loading up the cart, telling an acquaintance about their new car, tossing in a bottle of vitamin D.  Even laughing.  Maybe making plans for a party.

I'm tempted to say something corny like Life goes on.  So I'll quote my daughter on ". . . the best moments of life are still in the future."

LUMPECTOMY FOR BEGINNERS . . . in the radiation room

If your DCIS is low grade and you are an older patient, you may want to go to http://www.medpagetoday.com and read  some of the  peer-reviewed article on radiation findings.

Yesterday, after I agreed to radiation, they gave me a gown and took me to the treatment room.  I saw a shiny black, low bench, definitely suitable for an upscale bus stop.  They settled me on it with a fresh blanket, and positioned my arms above my shoulders; my tendinitis was not happy about this.  Overhead was a lighted mural of branches and colored leaves.

As my girlfriend predicted, there was a strange, lumpy pad under my upper torso.  This takes a specific mold of where my shoulders, torso, and arms will be for every treatment.  

I mentioned my sinus problems, and they smilingly said, If you have to cough, cough upward.  They told me if the cough moved me too much, the machine would stop.

Then the tattoos--more road signs for the radiation.  Just three tiny needle jabs with some sort of permanent ink.  This keeps the marks from coming off in the shower.  

At some points, the bench rolled me back with my breast area under a metal arch.  Apparently this is where the radiation comes from.  It is perhaps less than a foot thick, like half a big, skinny donut, so I was not really enclosed.  Note to self: not claustrophobic.  

The whole session was comfortable and non-scary, and the staff were kind, happy, pleasant.

After I got home, I found a paper in my folder saying that the first visit Monday would be a half hour, and if I wasn't comfortable in the position, I should take a Tylenol an hour ahead.  

LUMPECTOMY FOR BEGINNERS . . . the radiation oncologist visit and . . .

All I promised my surgeon was that I'd talk to Dr. Sands.  I parked in Radiation Patient and opened the door to a blank wall and big black letters: CANCER, indicating I was right next to the radiation department.  The receptionist was cheerful;  I liked the holiday decorations and the very casual dress code. Of course, more than the usual snowdrift of paper work.

They put me in the chilly exam room, making sure I had the correct height chair and even a warm blanket, for watching a 15 minute video on radiation.  That sounded like way too much information in one dose, but I watched.  Nothing too new, but the woman in the video didn't seem to have any protection on other parts of her head and torso.

The doctor came in dressed less casually than the office staff, and carrying a lot of paper.  I was armed with  a list of my questions on whether I could handle radiation considering my whole medical picture.  At the end of my paper were some statistics I got from Sloan Kettering interactive page.  They indicated that I'd better get some radiation and medicine to protect my future.

The doctor gave me a sort of orientation - the radiation facility belongs to the hospital, and so on.  Then she presented some studies indicating the long-term life extension and freedom from recurrance that radiation can give.

In between there somewhere I asked my questions and told my hesitations.

Then I mentioned that the woman in the video didn't seem to have the rest of her body protected.  Dr. Sands said there were no lead blankets because the radiation would go right thru them  This was not reassuring.
She explained, drawing a diagram, that they protect the lungs by using very precisely aimed radiation.  Her drawing emphasized that only one slight edge of a lung would be involved--being right next to the last bit of the target radiation area.

Somewhere deep inside I thought again "it's not so targeted that personnel can stay in the room!"

She went through the side effects list, long-term and short, and told me these were not going to happen to me.  She mentioned the huge population in which one or two persons might have serious side effects.

I read one more side effects story, and she said:  It's your decision; but you have to believe what I tell you. These things are not going to happen to you."
 .
 By the time we were finished, my mouth just said:  I'm tempted to say Yes.  Somehow my fear had gone away.

She said  There would be three weeks of radiation followed by four days of specific focus on one small area that had been diagnosed.  So I said yes

 Then she told me we would go in right then to work on "staging,"establishing my exact position to lie in every day to make sure the rays would go to the right places.

Next post:  the staging in the radiation room.

LUMPECTOMY FOR BEGINNERS.. . an oops?

I just got a letter cautioning me against worrying all the time.  Actually I don't worry as much as one might think, and didn't mean to suggest that I do..  And I don't think other  women with DCIS worry all the time.  Hope not.

Here's what else I do:

Look for warmer clothes.  Greater Houston area can be freezing, and the Mayo Clinic book suggests I might want to aim for 5 hours of exercise!   every week to prevent cancer.  You know, like the tough woman detectives in my addictive mystery novels - they run miles before breakfast.  Maybe I need a dog . .

Go for my walk, which is over a thousand steps but not 10,000.

Pray that I'll like the radiation oncologist.

Load the dishwasher.  Let the household cats in and out and in. Laundry.  Write.  Read. Meditate.

Go to a meeting.  Talk with my family about other things, not about DCIS.   I text my daughter about significant appointments and results.

Go to Starbucks and feel like a member of the community.  ( A coffee shop or two was my refuge in California, and I met some great people there.)

Sing along with the music on the car radio, and enjoy driving.

Give thanks for new friends like the neighbor who had radiation and it did not make her sick.

Give thanks for other friends and my dear family.

Give thanks for some magnificent doctors in my life in both states.

Confide in people I trust.

LUMPECTOMY FOR BEGINNERS - The other F word

My friend was right.  It is a shock to hear the word cancer on the phone or in the doctor's office. My supportive neighbor says I'm handling it well.  I don't talk about fear -- but now I'm thinking about it

Learning about the steriotactic biopsy was Fear and resistance - the procedure sounded barbaric to me. And yet it went well and I had a good time at the hospital.

And I was able to compartmentalize about the lumpectomy.  I trusted the surgeon, and after all, I've had plenty of successful experience with surgery.  I didn't even feel fear beforehand.  Maybe the doctor's telling me he had said a prayer was a help.

Then the post-op two-week appointment!.  (The surgeon had told me when we met that he would recommend I see a radiation oncologist and a medical oncologist.)  I read the pathology report again, more thoroughly.  Nothing on the report, as I've mentioned, gave me any hope of avoiding radiation.  So after we talked a little about the incision and the size of the specimen, he gave me the paper with the oncologists' contact information, and his reasons for choosing them.  

 I went home and put the contact information sheet in a red file.  I talked with my neighbor, I blogged about when to call the radiation doctor's number.  I reminded myself that she couldn't make me do anything I don't want to do.

I focused my research, still a lot of it from Mayo Clinic, on radiation.  I read other women's stories, and I felt Fear.  I made a list of my radiation concerns and felt FEAR.  I quoted some things, and felt FEAR.   I included a list of medical conditions I already have, and the one thing I've shared with friends:  how many x-rays I've had.  

I copied statistics from Sloan Kettering on how much longer I would be free of cancer if I had radiation and certain long-term meds.  They were compelling.  But . . .

There is a pattern here:

 In spite of having lost a best friend to cancer, I'm obviously more afraid of the treatment than I am of getting more cancer.  Or is the Fear of cancer buried so deep that I don't feel it, and so huge, that I don't dare feel it?

LUMPECTOMY FOR BEGINNERS post-op; makin' a list and checkin' it

After reading about DCIS in the Mayo Clinic book and website, etc.

Questions for a radiologist

How do you protect my lungs?

I had so many chest and other x-rays with the spine condition and a recent tendinitis. Don't they make this more dangerous?

Can it wait until my current health concerns are treated better?

How tired will I really get?

Will I need a cough suppressant every time?

My skin is so sensitive that the steri strips made a blister and red welts after the biopsy and surgery; will this be worse? I burn rather than tan.  Will I be too "sunburned" to wear a bra?

How many days of treatment do I need?

LUMPECTOMY FOR BEGINNERS - Post Op, take a breath

The steri strips are off.  I wish I'd asked the doctor to take them off - it had been two weeks.  I liked the surgery area better with the strips on.  But I'll see him next month and we can talk about how it looks and feels.  I didn't have any infection; no serious bruises.  Sometimes it hurts for a bit, then doesn't.   I do wear my soft bra, but usually not to sleep.

My friend, who has been through some of this already, advised me not to judge myself--that some of the fatigue can be due to the diagnosis that led to the lumpectomy.  She reminded me that nobody is really prepared to hear she has cancer (despite what some now call DCIS. . . "baby cancer" or "doorway to cancer" or "not cancer."  Hearing it is a shock at some level.

 Life does change.  New doctors (a fear of mine in a new state), appointments, reading the Mayo clinic site like the daily newspaper.  And reading my pathology report . . . which was more disappointing than I admitted to myself.

I'm older than my friend and in this new state and  my new environment.  I need to be realistic instead of apologetic, and take the breaks I need.  Breaks to be sure how I really feel and then to put it in perspective.

And a wise, kind person left a Starbucks gift card on my steering wheel!  Treats are good.

LUMPECTOMY FOR BEGINNERS _ When to call the radiation oncologist

Dr. Hubbard suggested that I could call the radiation oncologist after the holidays, to schedule a talk.  I thought I should call right away.  But . . .

I wish my health were better now.  I want to be at optimum health if I'm told I should have radiation.  I'm worried because I've read in places including the Mayo Clinic book that I would experience fatigue with the treatment.   But I already have frequent tiredness.  And the family will be gone the last week of this month, so I'll be tired alone (this is the woman who lived alone for 20 years),


Three days ago, in response to my complaints, the digestive health doctor allowed big changes to my medicine regime.  I need time to see if the new routine helps.

And, I'm worried about all the x-rays that were connected to the spine problem, including some chest films.  But if I need radiation, I'll need it anyway.

And my lungs already took a beating during the coughing virus and two subsequent infections  in 2012.

What I should be doing is keeping up my search for ways to be more healthy every day.

And I should print this out to help me remember what to talk to the radiation oncologist about.

LUMPECTOMY FOR BEGINNERS Post-op visit part 2

Back to Dr. Hubbard.  I requested another look at the pathology report - 3 pages.  When I saw the size of the piece removed, I was startled.  It was bigger than I had thought, and nothing in the report led me to believe I could avoid radiation.  (But no, I'm not a doctor.)  I don't look that different, really.

The specimen was estrogen dependent, and as I expected the surgeon mentioned tamoxifen again, with better statistics than I've read.

He looked at my incision and said, "Looks good."  It has looked good from the beginning.  You'd never think to look at me that so much was removed.

He gave me glowing reports on the oncologists, without pushing.  Suggested I might at least like to see them. And I expect to do that.  Told me how expert the radiation oncologist is - that he would go to her if he needed radiation, and she would not give it to me if I didn't need it.

Told me he thought I would enjoy the medical oncologist, but if I don't like him, Dr. H will send me to someone else.

Two doctors I've never seen, and I'm still very aware that I'm far from my long-trusted primary doctor in L.A.

So, my favorite part of today's visit was Dr. Hubbard's telling me to make another appointment for about four weeks from now.  I had feared leaving his care, letting go of the trapeze and flying thru the air, so to speak.  This way it feels like there's a net under me.

LUMPECTOMY FOR BEGINNERS instincts and post-op visit

The best advice I got from Dr. Zeitler's PULSE  Be Lucky post was " trust your instincts but do not follow them blindly."  

Today I will see the surgeon for the 2-week post lumpectomy check up.

 Before the surgery, I had asked him plenty of questions about how I would be afterward.  He told me that the pathology report would probably say I didn't need any more surgery.   Of course I wanted to be told I could just go home and get well.

He had seemed sure that I was getting ahead of myself, but he reluctantly said he would recommend that I see a radiation oncologist and a medical oncologist.  The radiation oncologist is a woman, and my experiences with female doctors has not been great.  Radiation!  A woman!  My instinct said "RUN."   

And medical oncologist!  And tamoxifen was mentioned.   My instinct said, "Don't make me!!!  I have enough problems!"

Then my instinct got connected to my reasoning power.

 I rang the doorbell of a neighbor who is a breast cancer survivor.  She told me her story, including that radiation did not make her sick. She gave me loads of support.   And told me she wants to talk after today's appointment.  She told me that she and her husband had really liked her oncologist.  Will I?

I reminded myself that "I'll need a second opinion," is not cussing if you say it politely.  That it's possible to look for a way to get along,  But that sometimes we have to say goodbye to doctors if we cannot get along.

Today I'll take those two names.

LUMPECTOMY FOR BEGINNERS and Don't leave the locker room without this

There are legions of women my age who know more about sports than I do.  This does not stop me from writing about hoops and pigskin and jocks.   

In the movie Hoosiers, and a million other films and books, the players don't leave the locker room between halves (or whatever) even after an avalanche of abuse, without some bit of encouragement like:
Plow 'em under! (Yes, I"m in Texas) Or Make me Proud!  Get out there and make  HISTORY!   Or Show 'em whatchu got!

The advice I get in hospital locker rooms is usually:  Put the gown on open to the front and go thru the brown door.   This is somewhat inadequate to prepare me for what's behind the brown door,  and leaves WAY too much to my imagination.   

Before I go out the brown door next time, I should have locker room wisdom in my pocket, or hidden in my underpants if necessary.   For instance:  I'm a Healer!   Some of the best moments in life are in the future!  I've got plans!  Or, to be more locker-roomish,  “You gotta play till the ninth inning, man.” * And even  Show 'em whatchu got!

What I got is a surgeon I trust.  What I got is a successful lumpectomy.  What I got is a history including  successful recovery from spine fusion despite postponing too long. (Note to self:  If I agree to more cancer treatment, don't wait too long.)  What I got is the prayer and meditation.

What I got is good-looking, active CHEERLEADERS who lived through what's in this next quarter.  I got them by daring to speak up about DCIS.   And I spoke to these men and women because they didn't keep their own cancer a secret.


I hope what you got is PLANS for your own particular future.  GOALS.  Show "em whatchu got!  


*John Croslin in Austin Kleon, 

LUMPECTOMY FOR BEGINNERS The daily dozen or so

I still have the steri-strips over my incision. The written instructions from the surgery center said leave them on up to three weeks.

Sometimes the incision is sore; or I think I'm sore along the route of the biopsy.  Other times I forget the incision is there.  I wore a bra to sleep the first week, now I sometimes feel better without it at night.  I usually sleep on my side, so it's sometimes hard to get comfortable.  Then what works is sleeping on my back with a pillow under my knees.

The only instruction the surgeon was firm about was to skip the three-pound dumbbells.  I used that as an excuse to skip my ankle weights, too.  Not good. Why am I lazy about the ankle weights?

If I'm the first one awake, I do a of exercises in bed--some from spine rehab, and still very useful..
Pressing my knee against the bed --alternating legs.
Moving the leg to the side and back, ten times, then the other leg.
Pulling my heel along the bed toward my buns--ten times, then the other leg.

Also tendinitis exercises that don't hurt my incision, pressing both my shoulders against the bed 14 times. Gently. Then on my back, pulling my elbows down my side 14 times.
And a couple more for neck and tendons.  In short:  keeping up upper body strength without the dumbbells.  

Above all, walking.  Since it's wintery here some days, I venture out for a few minutes before I put on my sunscreen moisture - just to get some Vitamin D, which I may need, really need if I have more treatments.

LUMPECTOMY FOR BEGINNERS - The whole patient? Or?

I cancelled my appointment with the Digestive Health doc. (Because after all, I'll have these breast related appointments.)  Then I read the circular that comes with the tummy medicine, and quickly re-scheduled my Monday visit with her.

I had felt earlier that the dentist and the GI and whatever were a nuisance at this time.

Then I told a neighbor and cancer survivor what I've shared here:  that I am a whole person.  And most of me is well.  So don't I need to take care of all of me?  I'll make my dentist appointment, too.

I keep talking and writing about the patient's experience.  Perhaps I should say instead:

the whole person's experience as a patient!